Diagnosis of the situation of persons with disabilities in Romania Diagnosis of the situation of persons with disabilities in Romania Coordinators: Vlad Grigoraș Manuel Salazar Cristina Iulia Vladu Cosmin Briciu Bucharest, 2021 Disclaimer This report is a product of the International Bank for Reconstruction and Development/ the World Bank. The findings, interpretations and conclusions expressed in this document do not necessarily reflect the views of the Executive Directors of the World Bank or the governments they represent. The World Bank does not guarantee the accuracy of the data included in this work. This report does not necessarily represent the position of the European Union or the Romanian Government. Copyright Statement The material in this publication is copyrighted. Copying and/or transmitting portions of this work without permission may be a violation of applicable laws. For permission to photocopy or reprint any part of this work, please send a request with the complete information to either (i) National Authority for the Rights of Persons with Disabilities, Children and Adoptions (Bd. Gheorghe Magheru no. 7, Sector 1, Bucharest, Romania) or (ii) the World Bank Group Romania (Vasile Lascăr Street no. 31, 6th floor, Sector 2, Bucharest, Romania). This report is also available in print: ISBN 978-973-0-35208-5 (Romanian language) and ISBN 978-973-0-35206-1 (English language). This report was delivered to the National Authority for the Rights of Persons with Disabilities, Children and Adoptions in October 2020 under the Reimbursable Advisory Services Agreement on “Consolidating the Coordination Mechanism to Implement the United Nations Convention on the Rights of Persons with Disabilities (CRPD)” signed between the National Authority for Persons with Disabilities1 and the International Bank for Reconstruction and Development on March 21, 2019. The report corresponds to Output 4 under the above-mentioned agreement: “Diagnosis of the situation of persons with disabilities in Romania.” 1 The project, initially implemented by the National Authority for Persons with Disabilities, has been taken over by the National Authority for the Rights of Persons with Disabilities, Children and Adoptions – an institution established by the Government Emergency Ordinance no. 68 of November 6, 2019. 3 Acknowledgements “Diagnosis of the situation of people with disabilities in Romania” is produced under the Reimbursable Advisory Services Agreement on “Consolidating the Coordination Mechanism to Implement the United Nations Convention on the Rights of Persons with Disabilities (CRPD).” The activities necessary for developing this Diagnosis were coordinated by Vlad Grigoraș (Senior Social Protection Economist), Manuel Salazar (Lead Social Protection Specialist) (task team leaders), Cristina Iulia Vladu (Social Protection Specialist), and Cosmin Briciu (Senior Researcher) under the guidance of Cem Mete (Practice Manager, Social Protection and Jobs) and Tatiana Proskuryakova (Country Manager). The document received thematic inputs from the following experts: Alexandru Mănăilă, Laura Tufă (accessibility and mobility domain); Monica Obreja, Georgiana Grozescu, Elena Georgiana Pascu (protection of rights domain); Cosmin Briciu, Gabi Mihaela Comănescu (employment domain); Diana Chiriacescu, Claudiu Ivan (social protection domain); Irina Boeru, Eugen Crai (education domain); Diana Chiriacescu, Cerasela Predescu, Alexandru Toth (social services and independent living domain); Fidelie Kalambayi, Magdalena Pătruleasa (health domain); Andreia Bruckner, Aurelian Muntean (social participation domain). The following have provided feedback and other contributions: Radu Alexa, Bianca Beu, Adriana Borună, Dorica Dan, Adrian Matei, Cecilia Păunescu, Florentin Rădulescu, Simona Smulțea (Self-representatives or representatives of persons with disabilities), Dr. Mihai Berteanu (Rehabilitation Specialist), Elena Botezatu (Human Resources Specialist), Diana Chiriacescu (Social Protection Specialist), Roxana Damaschin-Ţecu (Deinstitutionalization Expert), Ioana Iliescu (Legal analysis expert), Corina Ilinca (Social research expert), Adina Iorganda (Social Protection Specialist), George Matu (Social research expert), Monica Obreja (Social Protection Specialist), Elena Georgiana Pascu (Human Rights Expert), Cristina Petcu (Health Specialist), Iris Popescu (Accessibility Expert), Alina Sava (Education Specialist). The collection of data was carried out by: Marius Vasile Apopei, Natanael Alexandru Bitiș, Alin Iosif Croitoru, Elena Lidia Dinu, Attila Gabora, Irina Georgescu, Angelica Hîrju, Oana Cristiana Iftode, Andrada Mihaela Istrate, Ștefan Mușat, Sonia Nițulescu, Oana Maria Alina Perju, Ștefan Lucian Rotariu, Elena Iulia Trifan (Social research experts), and conducting a national survey of the general population and persons with disabilities: CC SAS (market research company). Adrian Dușa (Database Specialist) and Emilian Hossu (Programming Expert) have developed data management instruments. Data entry and validation was ensured with support from: Cristian Chesaru, Luisa Mardale, Andreea Negraia (Research assistants). Data analysis was carried out by: Reena Badiani-Magnusson, Natalia Garcia Pena Bersh, Irina Boeru, Mădălina Manea, Sonia Nițulescu, Andra Panait (Social research experts). The graphic design was carried out by Răzvan Zamfira and Andra Croitoriu. The cover was illustrated by Sorina Vasilescu. Most of the photographs and descriptive texts were produced by Bogdan Dincă, except for the photograph at the beginning of subchapter 6.1, taken by Cătălin Onofrei and the photograph at the beginning of chapter 7, taken by Mircea Reștea. Moreover, the team received support from the following: Oana Caraba (Operations Analyst), Monica Ion (Accounting Assistant), Fiona Mackintosh (Editor), Oana Răican 4 (Translator), Lauri Scherer (Editor), Miruna Voiculescu (Translator) and Andrei Zambor (Program Assistant). In addition, the document benefited from an internal peer review process involving World Bank experts in the field of disability: Gustavo Demarco (Lead Economist and Global Lead), Charlotte V. McClain-Nhlapo (Global Disability Advisor) and Marijana Jasarevic (Social Protection Specialist). The World Bank team wishes to express its gratitude to the representatives of the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) for the excellent cooperation, the feedback provided at each step of implementation of the activities, the engagement and the ongoing support in coordinating the data collection process necessary for the diagnosis, offered under the guidance of the four Presidents who led the institution from the formulation of the project under which the diagnosis was prepared until its finalization (Adrian Vlad Chiotan, Mihai Tomescu, Maria Mădălina Turza, and Florica Cherecheș). From NARPDCA, the management team contributed to the realization of this deliverable: Anca Roxana Ilie, Elena Filip, Anca Văcaru, Georgeta Chiriță, Ioana Mihaela Hangiu, Alexandru Andreev, as well as the following experts: Anna Maria Neagoe, Maria Ileana Cotoi, Monica Violeta Solomie, Monica Stanciu. Anna-Maria Neagoe, through her considerable expertise in the field of disability in Romania, guided, with empathy for persons with disabilities, professionalism and team spirit, the content developed in this report from the position of Director of the Directorate for the Rights of Persons with Disabilities of NARPDCA. Furthermore, we thank the representatives of the civil society (persons with disabilities and their representatives) who took part in the consultations and whose contribution was essential in order to select and to determine the way of analyzing the problems pursued in the diagnosis: Mariana Andrei (Representative), Mariana Armean (Estuar Foundation), Marta Iozefina Bencze (Self-representative), Mircea Bucur (Self-representative), Dora Călian (Legal Resource Center), Nicolae Chiosu (Self-representative, psychologist), Lili Covaci (Pyramid Learning Center Association), Iulian Crăciun (Self-representative), Violeta Cuc (National Association of Authorized Interpreters in Sign Language), Etelka Czondi (Sense International Romania), Ovidiu Damian (Hans Spalinger Association), Mihai Dima (Romanian Association of the Blind), Gabriela Dima (Self-representative), Amedeea Enache (Estuar Foundation), Ionela Ferucă (Help Autism Association), Mugur Frățilă (Psychologist), Radu Gănescu (Coalition of Organizations of Patients with Chronic Diseases in Romania), Alina Gheghea (Self-representative), Filip Ghiorghi (All for You Association), Florin Giosan (Nazarcea Group), Mihail Grecu (Romanian National Association of the Deaf), Adriana Harja (Myasthenia Gravis Romania National Association), Mădălina Hogea (Self- representative), Octavian Ilina (Compatible Solutions), Rozalina Lăpădatu (Association of Patients with Autoimmune Diseases, member of the Romanian National Disability Council), Laura Lazăr (Help Autism Association), Virgil Lazăr (Romanian Association of the Blind), Emanuela Leampăr (Inclusion Romania Federation), Mihai Leoveanu (Self- representative), Alexandru Luchici (Self-representative), Mihai Lungu (Path to Access Association, member of the Economic and Social Council), Anda Mândru (Motivation Romania Foundation), Catrinel Maria (Psychologist), Bianca Marin (Help Autism Association), Denisia Mazilu (Individual social assistance office), Iuliana Meseșan (Motivation Romania Foundation), Andreea Mihai (Romanian National Association of the Deaf), Adrian Mihalcea (Romanian Association of Persons with Neuromotor Disabilities, member of the Romanian National Disability Council), Florin Milciu 5 (Romanian Paralympic Committee), Daniela Mitcov (Self-representative), Marius Mitrache (Self-representative), Elisabeta Moldovan (Something to Say Association), Anca Moldovan (“For You” Foundation), Andreia Moraru (Dizabnet Federation), Andre Muit (Betania Association), Cristian Mușat (National Union of Organizations of Persons Infected/Affected by HIV/AIDS in Romania), Tedi Necula (Self-representative), Lucian Negoiță (Self-representative), Andreea Nichifor (Association of Alternative Methods of Social Integration), Gabriel Stelu Nicolescu (Romania Connect 1990 Association, member of the National Federation of Associations of People with Disabilities in Romania), Gabriela Niță (Motivation Romania Foundation), Valentin Niță (National Union of Organizations of Persons Infected/Affected by HIV/AIDS in Romania), Dana Oncioiu (Representative), Laila Onu (“For You” Foundation), Manuela Oprea (Something to Say Association), Marian Pădure (Babes Bolyai University, Cluj- Napoca), Dan Pălimariu (“Down Activ” Moldova Association), Elena Pană (Department of community psychiatry and psychosocial reintegration “Steps”, Clinical Hospital of Psychiatry “Prof. Dr. Alexandru Obregia”), Cecilia Păunescu (“For You” Foundation), Iulian Petre (National Union of Organizations of Persons Infected/Affected by HIV/ AIDS in Romania), Veronica Popa (Representative), Dacian Mihail Pribeanu (Romanian Association of the Blind), Monica Radu (Self-representative), Radu Răileanu (Press Monitoring Agency - Active Watch), Daniel Roșoiu (Motivation Romania Foundation), Horaţiu Rusu (Faculty of Law - “Lucian Blaga” University of Sibiu), Florian Sălăjeanu (Professional Non-Governmental Association for Social Assistance), Francisc Simon (National Organization of Persons with Disabilities in Romania), Simona Smultea (Something to Say Association), Bianca Alexandra Spînu (Self-representative), Vlad Stamate (All for You Association), Traian Stanciu (National Information and Cooperation Network for the Integration in the Community of Children and Young People with Special Educational Needs, member of the Romanian National Disability Council), Zoltán Szövérdfi-Szép (Something to Say Association), Gabriela Tănăsan (European Network of (Ex-)Users and Survivors of Psychiatry), Sorin Ilie Țața (Romanian National Disability Council), Daniela Tontsch (Romanian National Disability Council), Ovidiu Tuduruță (Self-representative), Tudorel Tupiluși (Romanian Association of the Blind), Lăcrimioara Vinter (“Aproteica” Association of Phenylketonuria Patients), Ecaterina Vrăsmaș (National Information and Cooperation Network for the Integration in the Community of Children and Young People with Special Educational Needs, member of the Romanian National Disability Council), Traian Vrăsmaș (National Information and Cooperation Network for the Integration in the Community of Children and Young People with Special Educational Needs, member of the Romanian National Disability Council) and Meda Zamfir (Help Autism Association). The World Bank would like to thank all the institutional actors involved in the data collection process following the steps of the NARPDCA team, without which this analysis would not have been possible: the National Authority of Quality Management in Health, the National Agency for Employment, the National Administration of Penitentiaries, the National Agency for Payments and Social Inspection, Ombudsman, Teacher Training Centers, County Centers for Resources and Educational Assistance, the National Audiovisual Council, the National Council for Combating Discrimination, General Directorates for Social Assistance and Child Protection, the General Inspectorate for Immigration, the National Institute for Mother and Child Health, County School Inspectorates, Ministry of Culture and National Identity (through the National Institute for Cultural Research and Training), Ministry of Education, Ministry of European Investments and Projects, Ministry of Health, Ministry of Youth and Sports, and Guardianship Authority Services (with the support of the Prefect’s Institutions). 6 We thank all the persons who were interviewed in the national qualitative research (representatives of central, county and local institutions; employers; representatives of NGOs providing services or organizations representing persons with disabilities; persons with disabilities and their representatives), as well as representatives of social enterprises, authorized protected units and public and private universities that responded to the surveys. We also thank all the persons with disabilities who agreed to be photographed and share their life experiences. 7 Table of Contents 13 Introduction 22 1. Accessibility and mobility 27 1.1 Limited access to the physical environment 39 1.2 Limited access to the information and communications environment 47 1.3 Limited access to transportation 54 1.4 Vulnerability to situations of risk and humanitarian emergencies 60 2. Effective protection of the rights of persons with disabilities 63 2.1 Limited possibility to make decisions 88 2.2 Limited access to justice 108 3. Employment 112 3.1 Limited access to employment 133 3.2 Low quality of employment 148 3.3 Limited access to training programs 157 4. Social protection 163 4.1 Limited access to poverty reduction programs aimed at the general population 170 4.2 Limited coverage by existing programs of the additional costs related to disability 184 5. Social services and independent living 187 5.1 The incomplete regulatory framework for social services 200 5.2 Institutionalization of persons with disabilities 210 5.3 Limited access to the community social services necessary for independent living 225 5.4 Providing access to social housing 231 6. Education 235 6.1 Limited access to quality education at all pre-university levels 253 6.2 Limited access to tertiary education 8 261 7. Health 264 7.1 Limited access to treatment and public health services 276 7.2 Limited exercise of the right to sexual and reproductive health 284 7.3 Limited access to treatment with dignity and respect 291 8. Social participation 294 8.1 Limited access to cultural activities 303 8.2 Limited access to sporting, recreational, and tourism activities 312 8.3 Limited access to the electoral process 320 8.4 Limited participation in public life 326 9. Implementation of the CRPD and monitoring of the observance of the rights of persons with disabilities 330 9.1 The limited capacity and coordination of actors at the central level 336 9.2 The limited role of independent mechanisms for monitoring the implementation of the CRPD 346 9.3 The limited participation of persons with disabilities and their representative organizations in the monitoring process 350 References 364 Annexes 364 Annex 1. Relevant institutional actors for each domain of the Diagnosis 377 Annex 2. Introduction 380 Annex 3. Accessibility and mobility 383 Annex 4. Effective protection of the rights of persons with disabilities 386 Annex 5. Employment 392 Annex 6. Social Protection 398 Annex 7. Social services and independent living 403 Annex 8. Education 410 Annex 9. Health 413 Annex 10. Social participation 416 Annex 11. Implementation of the CRPD and monitoring the observance of the rights of persons with disabilities 9 Acronyms and Abbreviations ADR Authority for the Digitalization of Romania ANCF Administration of the National Cultural Fund ANED Academic Network of European Disability Experts AROP At risk of poverty ASF Authorized sheltered facilities ATU Administrative-territorial units CAAD Committee for the Assessment of Adults with Disabilities CAC Care and Assistance Center for Adults with Disabilities CAPSI County Agency for Payments and Social Inspection CASDA Complex Assessment Service CC Crisis center CCR Constitutional Court of Romania CCREA County Center for Resources and Educational Assistance CEA County Employment Agency CEB Central Electoral Bureau CHIH County Health Insurance House CHPP County House of Public Pensions CIE Community Information and Education CIL Center for independent living for adults with disabilities CLR Center for Legal Resources CMT Continuous medical training COTBI Center for occupational therapy-based integration CRPD United Nations Convention on the Rights of Persons with Disabilities CRPD Committee on the Rights of Persons with Disabilities Committee CSI County School Inspectorate DPO Disabled persons’ organization DRRC Disability recovery and rehabilitation center ECRIS European System of information on Criminal Records ESF European Social Fund ESIF European Structural and Investment Funds ESSPROS European system of integrated social protection statistics EU European Union Eurostat Statistical office of the European Union EU-SILC European Union Statistics on Income and Living Conditions FSA Family support allowance GAS Guardianship Authority Service GD Government Decision GDP Gross domestic product GDPR General Data Protection Regulation GDSACP General Directorate for Social Assistance and Child Protection GEO Government Emergency Ordinance GIES General Inspectorate for Emergency Situations GMI Guaranteed minimum income 10 GO Government Ordinance GP General practitioner HCAAD Higher Committee for the Assessment of Adults with Disabilities HCOP Human Capital Operational Program HIV/AIDS Human immunodeficiency virus/Acquired immunodeficiency syndrome HRC Habilitation and rehabilitation center for adults with disabilities ICEIC Inter-ministerial Committee for Ensuring the Implementation of the CRPD ICF International Classification of Functioning, Disability and Health ICT Information and Communication Technology IES Inspectorate for Emergency Situations ILO International Labor Organization IPP Institute for Public Policy IRSIP Individual Rehabilitation and Social Integration Program LEA Local Employment Agency LPA Local public authority MDAC Mental Disability Advocacy Center MDPWA Ministry of Development, Public Works, and Administration MEET Ministry of Economy, Entrepreneurship and Tourism MIA Ministry of Internal Affairs MIEP Ministry of Investments and European Projects MII Minimum inclusion income MLSP Ministry of Labor and Social Protection MRID Ministry of Research, Innovation and Digitalization MTIC Ministry of Transport, Infrastructure and Communications MYS Ministry of Youth and Sports NAARC National Authority for Administration and Regulation in Communications NAFA National Agency for Fiscal Administration NAP National Administration of Penitentiaries NAPP National Agency for Public Procurement NAPSI National Agency for Payments and Social Inspection NAQMH National Authority of Quality Management in Health NARPDCA National Authority for the Rights of Persons with Disabilities, Children and Adoptions NAVC National Audio-Visual Council NCCD National Council for Combating Discrimination NCFHE National Council for Financing of Higher Education NEA National Employment Agency NEET Not in Education, Employment, or Training NGO Non-Governmental Organization NHIH National Health Insurance House NHPP National House of Public Pensions NILT National Institute for Lawyer Training NIM National Institute of Magistracy NIMCH National Institute for Mother and Child Health NIPH National Institute of Public Health NIS National Institute of Statistics NMPT National Mechanism for the Prevention of Torture 11 NPHI National Public Health Institute NQA National Qualifications Authority NRRC Neuropsychiatric recovery and rehabilitation center NSPD 2016- National Strategy for Persons with Disabilities 2016-2020 2020 NSRPD 2021- National Strategy for the Rights of Persons with Disabilities 2021-2027 2027 NUPNR National Union of Public Notaries in Romania OECD Organization for Economic Cooperation and Development OHCHR Office of the United Nations High Commissioner for Human Rights ONMMAR Order of Nurses, Midwives, and Medical Assistants in Romania OPCAT Optional Protocol to the Convention against Torture PCDRR Pilot center for disability recovery and rehabilitation PEA Permanent Electoral Authority PFF Plan For the Future PHD Public Health Directorate PLA Public Legal Aid PPES Public Procurement Electronic System PPP Purchasing power parity PPS Purchasing power standard PSAS Public Social Assistance Service RAQAHE Romanian Agency for Quality Assurance in Higher Education RAQAPE Romanian Agency for Quality Assurance in Pre-University Education RC Respite center RCC Residential care center RCP Romanian College of Physicians RNUBA Romanian National Union of Bar Associations ROP Regional Operational Program SCM Superior Council of Magistracy SEN Special educational needs SH Sheltered house SIC State Inspectorate of Constructions SME Small and Medium-sized Enterprises SNSHIF Single National Social Health Insurance Fund SRSE Sole Register of Social Enterprises SPT United Nations Subcommittee on Prevention of Torture SRH Sexual and reproductive health SSP Social service provider STS Special Telecommunications Service TLI Territorial Labor Inspectorates TTC Teacher Training Center UN United Nations VAT Value-added tax WHO World Health Organization WISE Work inclusion social enterprises 12 Introduction Introduction IN SHORT What is this report and what is its purpose? This report is a study of the extent to which the rights of persons with disabilities are respected in Romania. The rights of persons with disabilities are defined by CRPD United Nations the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and, like almost all Convention on the Rights of Persons with Disabilities countries around the world, Romania has undertaken NED to protect these rights by signing the CRPD. SIG The Romanian Government must prepare the National Strategy on the Rights of Persons with Disabilities for 2021-2027. The strategy contains a plan of measures for implementing the CRPD within Romania to ensure that the rights of persons with disabilities are respected and that their living National Strategy situations are improved. Having such a strategy is on the Rights of important not only for this reason but also because it Persons with Disabilities for is a mandatory condition for Romania to receive 2021-2027 financing from the European Union funds for the period 2021-2027. In order to develop an effective strategy, it is first necessary to understand the problems and needs of persons with disabilities. The goal of this report is to put together an accurate picture of these problems and needs as a foundation on which the strategy can be built. How many persons with disabilities are there in Romania and who are they? 16-49 years 20% persons with disabilities 25% of the total population of 16 years and over 50-64 years 29% in Romania 65 years and over 51% 6% persons with severe disabilities Disability The CRPD does not define disability as a person’s imperfection. Instead, it defines it as the relationship between a certain characteristic that a person may have (for example, a visual impairment) and how society responds to that specific characteristic (for example, what the state does to ensure that persons with visual impairments have equal access to all services). 13 Introducere The most common difficulties that persons with disabilities in Romania face are as follows: 21% 14% 13% 38% find it difficult or have significant visual have great difficulty find it difficult or impossible to walk or impairments even if remembering and impossible to take climb stairs. they wear glasses. concentrating. care of themselves. According to government statistics, in 2020: 853,465 persons in Romania held a disability ? 457,730 persons were receiving a disability pension certificate Some persons have a disability certificate and also receive a disability pension, but this exact number is unknown. What are the main problems faced by persons with disabilities in Romania? Ensuring the social and economic inclusion of persons with disabilities is a fundamental right yet to be realized in Romania. Persons with disabilities do not have access to the physical environment, they are excluded from employment, material well-being, the health system, or from a life together with other people, in the community. The percentage of persons who… suffer from severe material deprivation** are unemployed among persons aged 16-64** 6% 26% 6% 49% 14% 88% have had difficulty physically accessing public have had their medical needs unmet as a share of institutions in the previous month or have not those who have had such needs in the previous 12 accessed them at all* months** 9% 2% 34% 18% 67% 42% feel alone all the time or almost all the time** 7% 13% 27% Without disabilities With some disabilities With severe disabilities Sources: * World Bank survey of persons with and without disabilities (2020). ** EU-SILC 2018. 14 Introducere The problems faced by persons with disabilities are presented in nine chapters: 1 Accessibility and mobility Some persons with disabilities cannot physically access their own houses, public buildings, or public spaces or find it difficult to do so. Some persons with disabilities cannot use public transportation and face higher risks in the event of disasters or other humanitarian emergencies. 2 Effective protection of the rights of persons with disabilities Some persons with disabilities cannot represent themselves in court and cannot enter into contracts. Moreover, the justice system is not adapted to their needs. 3 Employment Most persons with disabilities of working age are not employed and cannot properly prepare for the labor market. Too few jobs are adapted. 4 Social protection The financial and other kinds of support provided by the state to cover the additional costs related to disability are not enough. Furthermore, persons with disabilities do not have sufficient access to benefits aimed at the whole population affected by poverty. 5 Social services and independent living Some persons with disabilities are still living in residential institutions. Some persons with disabilities have no access to community-based social services, and the quality of some of these services is not good enough. Few persons with disabilities have access to sheltered housing. 6 Education Some children with disabilities do not go to school or are not offered a suitable education of good enough quality, tailored to their needs. Of those who do go to school, too few end up graduating from college or a vocational school. 7 Health Some persons with disabilities cannot access or have trouble accessing medical services. Some persons with disabilities do not exercise their right to sexual and reproductive health. Some persons with disabilities are not treated with dignity and respect when they access medical services. 8 Social participation Some persons with disabilities cannot take a full part in the life of their communities and in society from the perspective of culture, sports, leisure time, elections, community initiatives, and civic activism. 9 Implementing the CRPD and monitoring the observance of the rights of persons with disabilities State institutions do not cooperate enough with each other, or with persons with disabilities and their representative organizations to develop and implement measures necessary to ensure the rights of persons with disabilities are respected. 15 Introducere How was this report prepared? The persons who worked on this report included experts in the rights of persons with disabilities, researchers in social sciences, and persons with disabilities and their repre- sentatives. Furthermore, consultations were organized with persons with disabilities, their organizations, and other non-governmental organizations that yielded informa- tion and insights that were important inputs into the preparation of this report. The analysis is based on a variety of data sources, including: Data from over 30 state institutions, many of which were being collected for the first time. 30+ Data from a national survey of persons both with and without disabilities. 860 245 232 964 860 392 649 736 201 392 629 120 542 912 629 Data from a survey conducted by Eurostat in all member 860 245 232 964 860 392 649 736 201 392 states of the European Union to be used to make 629 120 542 912 629 comparisons between the situation in Romania and other 860 245 232 964 860 countries. 392 649 736 201 392 629 120 542 912 629 Data gathered by means of 583 interviews conducted nationwide with persons with disabilities, NGOs representing or consisting of persons with disabilities, and representatives of public services, public institutions, employers, and many others. 583 16 Introduction Introduction The diagnosis of the situation of persons with disabilities in Romania is a comprehensive analysis of the main barriers faced by this group of people in all areas of life. This analytical study evaluates the extent to which Romania is observing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in the following main domains: (i) accessibility and mobility; (ii) the effective protection of the rights of persons with disabilities; (iii) employment; (iv) social protection; (v) social services and independent living; (vi) education; (vii) health care; and (viii) social participation. These are completed by a domain dedicated to the implementation of the CRPD and monitoring the rights of persons with disabilities. The situation of persons with disabilities in each domain was assessed based on an analysis of the existing institutional mechanisms for implementing the CRPD in Romania and monitoring the observance of the rights of persons with disabilities. The ultimate objective of this report is to inform the National Strategy for the Rights of Persons with Disabilities 2021–2027, which will be the basis for implementing and monitoring the observance of the CRPD in Romania.2 The Convention is the international law that stipulates both the rights of persons with disabilities and the obligations of the ratifying states to promote, protect, and ensure such rights. The Convention3 marks a shift from a medical to a human rights-based social model of disability. This model frames disability not primarily as a trait or defect of a person who should be the recipient of charity and care (as the victim of an individual tragedy)4 but as an interaction between the particularities of a person and how society responds to such particularities. In doing so, it highlights the barriers that hinder persons with disabilities from living and participating fully in society. Thus, the Convention establishes that persons with disabilities must enjoy the same human rights on an equal basis as any other person and that they must benefit from equal opportunities to enable their full participation as partners in society, with an equal statute in all areas of life. The Convention explicitly stipulates the civil, political,5 economic, social, and cultural rights of persons with disabilities.6 Romania has taken important steps for implementing the Convention, and there is significant scope for improvement. In 2010, Romania ratified the CRPD and designated the National Authority for Persons with Disabilities (NAPD) as the central authority in charge of coordinating its implementation. The NAPD’s activities, tasks, and structures were taken over in 2019 by the National Authority for the Rights of Persons with Disabilities, Children, and Adoptions (NARPDCA).7 In 2016, Romania adopted the National Strategy “A barrier-free society for people with disabilities” 2016–2020,8 which specifically aimed at enforcing the CRPD, but its implementation has been limited. The Operational Plan for the strategy contains 166 measures, most of which have 2 This diagnosis was developed as part of the project “Consolidating the coordination mechanism to implement the UN Convention on the rights of persons with disabilities” implemented by the NARPDCA, with technical assistance provided by the World Bank. Other deliverables complementing this report include: (i) a Strategic Note with detailed recommendations on the new Strategy (substantiated by this Diagnosis); (ii) a set of indicators to monitor the implementation of the 2021–2027 Strategy, together with a monitoring plan and training sessions on the use of this plan; (iii) the first Monitoring Report on the 2021–2027 Strategy; and (iv) an Evaluation Plan for the key programs and measures to be implemented under the 2021–2027 Strategy. 3 The terms “the Convention” and “CRPD” are used interchangeably in this study. 4 Oliver (1990: 2). 5 Such as accessibility, equal recognition before the law, access to justice, and participation in public life. 6 Respect for family, the right to education, health and employment, habilitation and rehabilitation, and adequate standard of living and social protection. 7 GEO no. 68/2019. 8 In this report, it is also referred to as the National Strategy for Persons with Disabilities (NSPD) 2016–2020. 17 Introduction not been implemented in full.9 Recently, the implementation of the Convention has become more visible on the public agenda since, pursuant to the Common Provisions Regulation for the 2021–2027 programming period, it is a horizontal condition for receiving European funds.10 Persons with disabilities are a significant and varied group in Romania. According to Eurostat data, approximately a quarter of Romania’s population aged 16 and over have disabilities,11 of which persons with severe disabilities account for 6 percent of the population of this age (965 thousand persons).12 Half of the persons with disabilities are aged 65 and over, and another 30 percent are 50 to 64 years old. Persons with disabilities are more likely to be women and are likely to have lower levels of education (Annex-Table 2). Most of the persons with disabilities have serious difficulty or are totally incapable of13 walking or climbing stairs (38 percent), followed by those with visual impairments, difficulties with remembering and concentrating (14 percent), and difficulties with personal care, such as dressing or bathing (13 percent) (Annex-Table 3 and Annex-Table 4). In 2020, 853,465 persons have disability certificates,14 and 457,730 receive a disability pension,15 but there is no estimate of any overlaps between these two groups. Ensuring the social and economic inclusion of persons with disabilities as a fundamental right has yet to be fulfilled in Romania. Persons with disabilities face significant challenges in terms of getting physical access to public buildings (Figure 1). In Romania, some persons with disabilities are denied their legal capacity, which deprives them of the possibility to exercise their rights.16 Persons with disabilities are less frequently employed, and, when they do have jobs, these are not adequately adapted to meet their needs. Persons with disabilities in Romania live in poverty to a much greater extent than the EU average and are often affected by severe material deprivation. Community services for persons with disabilities are insufficiently developed, and some persons are still in institutionalized residential care.17 Persons with disabilities often cannot afford the costs of their treatment, which they need to a much greater extent than persons without disabilities. Few children with special educational needs are receiving the necessary support services that would enable them to participate in and benefit from quality mainstream schooling, and as a result, they tend to have a much lower educational attainment level than average. Persons with disabilities feel lonely much more often than those without disabilities and cannot participate in public and political life on an equal basis with others. 9 In 2019, according to the reports submitted by the institutions that are coordinating measures of the Operational Plan of the NSPD 2016–2020, of the 166 measures included in the plan, 22 were finalized (in other words, at least one activity under that measure was finalized), 91 were being implemented, 17 had not begun to be implemented, and no information was available on the implementation of 36 measures (World Bank, 2019). The implementation stage for each area included in the strategy can be found in Annex-Table 1. 10 To meet this requirement, a country must have a national implementation framework for the Convention, which should include: (i) objectives with measurable targets, with data collection and a monitoring mechanism and (ii) arrangements to ensure that accessibility policies, legislation, and standards are adequately reflected in the program development and implementation (European Commission, 2018). 11 Here, disability is measured according to the concept of limitation of general activity, a dimension of health or disability that captures long-term limitation in carrying out routine activities (because of health problems). According to Eurostat, people may have severe limitations, some limitations (but not severe), or may be without limitations “in carrying out their activity over the previous six months due to health problems” (http://ec.europa.eu/eurostat/statistics-explained/index.php/Glossary:Disability). In this report, we will use the following equivalent elements regarding the survey data: persons without disabilities for persons who declare themselves without limitations, persons with some disabilities for persons who report some limitations, persons with severe disabilities for persons who declare themselves with severe limitations. 12 According to data from the National Institute for Statistics (NIS), as of 2020, Romania’s 16 years and over population is 16,091,562. 13 Using the classification given by the short set of functioning (WG-SS) of the Washington Group on Disability Statistics (2020). 14 The total number of children and adults with a disability certificate on June 30, 2020, according to NARPDCA data. 15 In September 2020, according to National Public Pension Fund data. 16 World Bank estimates based on data provided by the Guardianship Authority Services, indicate that there are at least 17 thousand such persons in Romania. 17 On June 30, 2020, there were 17,391 institutionalized adults with a disability certificate according to NARPDCA data. 18 Introduction FIGURE 1 The situation of persons with disabilities in Romania (percent) Percentage of persons who have had no or little Share of persons with disabilities who have not needed difficulty in terms of physical access to public support to make decisions on important aspects of institutions in the past month* their lives or who have received such support every time they needed it in the past year* 95% 88% 82% 88% 48% 80% Unemployment rate** Severe material deprivation rate** 26% 6% 49% 6% 88% 14% Percentage of persons aged 20–34 years old who Percentage of persons who have not had their attained secondary education level at most*** medical needs met in the total of those who have had such needs in the past 12 months** 21% 2% 30% 18% 77% 42% Percentage of persons who feel alone (almost) at all times** 7% 13% 27% Persons without disabilities Persons with some disabilities Persons with severe disabilities Sources: * World Bank survey of persons with and without disabilities (2020). ** EU-SILC 2018 data. *** EU-SILC 2017/2018 data. This report was prepared following a multi-stage process. First and foremost, the relevant articles of the CRPD were structured into eight main domains with the addition of an extra chapter on the implementation and monitoring of the CRPD.18 A team for each domain was created, consisting of an expert on the rights of persons with disabilities, a social sciences researcher, and a self-representative or representative of a person with disabilities. Based on the existing literature, each of these teams identified various potential key problems faced by persons with disabilities19 from the perspective of the CRPD. Initially, the teams drafted specific research questions on each problem20 and designed the methodology and the research instruments. In coordination with the NARPDCA, the identified problems along with the research 18 For a breakdown of the Convention’s articles divided by Diagnosis chapter, see Annex-Table 5. 19 The potential problems were chosen to reflect outcome difficulties of persons with disabilities. Outcomes are directly related to the welfare of persons with disabilities, such as their economic welfare, health, or education level. Difficulties related to infrastructure, funding, or human resources are just the reasons for such problems. Although initially certain issues were proposed and selected, these were reviewed or restructured following the qualitative research, the legislative analysis, and the quantitative data analysis. 20 The research questions focused on both a description of the problem (its scope and a profile of the people facing the problem) and the explanation for that problem (how the problem is tackled in existing strategic documents, the legislation, institutional arrangements, and according to cultural barriers or social rules). 19 Introduction questions and methodology were validated during a series of consultations with the civil society in September 2019.21 The data were collected between January and October 2020, though the first stage of the process was hindered by the COVID-19 pandemic.22, 23 The research carried out for this report combined different methods and included various quantitative and qualitative data. At the beginning of the project, there was virtually no relevant administrative or survey data available to analyze the problem of disability in Romania. The largest part of the joint efforts of the NARPDCA and the World Bank focused on identifying possible new data sources, building data collection instruments, and collecting and analyzing new types of collected data. The analyses underpinning this diagnosis rely on: (i) data collected and analyzed for the first time from more than 30 types of institutions at the central, county, and local levels;24 (ii) a survey conducted in August to October 2020 of a sample of persons with and without disabilities aged 16 years that was representative at the national level;25 (iii) EU-SILC survey data26 analyzed by stakeholder groups as they evolved between 2010 and 2018 in Romania and the other member states of the European Union; and (iv) qualitative data consisting of 583 interviews conducted with persons with disabilities and their representatives, representatives of relevant NGOs, and representatives of the relevant local and central public institutions in each domain. This report analyzes the problems in each domain by identifying their causes and proposing concrete recommendations. The report includes eight chapters, one for each main domain, as well as an additional chapter on the institutional mechanisms for implementing the CRPD and for monitoring the observance of the rights of persons with disabilities. The chapters all have the same structure: (i) the expected situation in terms of CRPD implementation and the guiding principles underpinning this diagnosis;27 (ii) a description of each problem (its scope, how it affects persons with disabilities, and a profile of the persons with disabilities who are affected); (iii) an analysis of the causes in terms of the strategic, legal, and institutional framework and of social and cultural norms;28 and (iv) specific measures that may mitigate or remove the problem in the forthcoming period. 21 The eight working groups registered a total of 124 participations of persons with disabilities, their representatives, representatives of disabled people’s organizations, service provider NGOs, and academics. 22 The interviews included in the qualitative survey following March 2020 had to be conducted online. The survey of persons with and without disabilities, which could only be conducted face-to-face given the need to ensure representativeness and given the length of the questionnaire, was not fielded until after the end of the state of emergency and until the research company subcontracted was able to guarantee adequate response rates. Communication with central institutions to collect quantitative data was also done online. 23 A total of 30 people from the World Bank team were involved in collecting the qualitative data and in data entry of the quantitative data. This report was drafted by teams according to the same structure as used in preparing the methodology. 24 These include the survey conducted in 1,673 child protection services at the national level, the Social Inspection Campaign on physical, information, and communication accessibility conducted by the National Agency for Payments and Social Inspection (NAPSI) of 1,442 institutions, data collected from the General Social Assistance and Child Protection Directorates on the number of personal assistants in all of the approximately 3,200 localities in Romania, or a survey conducted in museums and cultural institutions together with the National Institute for Cultural Research and Training. 25 The two samples (total population and persons with disabilities) were probabilistic, multi-stage, and stratified by locality size and by region, and primary selection units were selected with likelihood proportionate to their size. Then 16 thousand addresses in 50 primary selection units were visited to answer the questionnaires. 26 EU statistics on income and living conditions (EU-SILC) are collected by the European Commission to monitor poverty and social inclusion in the EU (according to Eurostat, https://ec.europa.eu/eurostat/web/microdata/european-union-statistics- on-income-and-living-conditions). 27 The principles that guided this diagnosis are those stated in Art. 3 from the CRPD: (i) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; (ii) Non-discrimination; (iii) Full and effective participation and inclusion in society; (iv) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (v) Equality of opportunity; (vi) Accessibility; (vii) Equality between men and women; (viii) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. 28 See Annex 1 for a description of relevant institutions for each domain. 20 Introduction This report aims to serve as a foundation for next steps in CRPD implementation. There are several requirements for the successful implementation of the next national strategy. First, the measures proposed will need to be selected and prioritized by the actors who will be responsible for their implementation, together with persons with disabilities and their representatives.29 Second, the next strategy and operational plan should be prepared by the NARPDCA in consultation with all other key stakeholders, and sufficient financial and human resources should be allocated to ensure the implementation of the established measures and for coordinating the strategy. Third, the new strategy should be accompanied by a set of monitoring indicators that can be measured from the first day of implementation, as well as an adequate monitoring plan and consistent and coordinated efforts for monitoring the strategy’s implementation. Fourth, all stakeholders mentioned in the strategy should develop the necessary institutional mechanisms to involve persons with disabilities and their representatives in the operational plan’s implementation and ensure that the necessary resources and environment are in place so the independent monitoring of the strategy will have the necessary impact. 29 This diagnosis analyzes 24 main problems and identifies 188 measures which could be implemented in the forthcoming period. An operational plan for which the implementing bodies take full ownership should include up to 150 measures at most to be distributed among different implementing institutions so that none of the relevant actors becomes overburdened. For example, the Finnish strategy recommends a program broken down by 14 content domains with 122 specific measures, while Scotland’s strategy envisages “five ambitious goals and 93 measures.” 21 Accessibility 1.Accessibility 1. and and mobility mobility Amir Amir has lived in Romania for twenty-four years. He came here from Iran, together with his father, mother, and brothers. He has one child. He has been working for a delivery company for two years now, where he packs and handles parcels. He is very happy with his job and his colleagues. Amir has hearing disabilities and he usually relies on Romanian sign language, but it is difficult for him to read written Romanian. He is currently preparing for the citizenship exam, but since the material is not accessible to people with hearing disabilities, he has a hard time studying for it. Accessibility and mobility 1 Accessibility and mobility IN SHORT What are the rights of persons with disabilities? Just like everyone else, persons with disabilities should be able to access everything that their community has to offer, including schools, workplaces, hospitals, cultural and sporting events, and products and services. The accessibility of the environment is key to enabling persons with disabilities to participate fully in all spheres of life. There are three key kinds of access: NEWS Access to the physical Access to information Access to communications environment means being able to means being able to means, for example, being able understand, for example, news understand what is being said to use sidewalks, pedestrian bulletins and articles, and being able to reply, which crossings, and street furniture instructions about how to use may require the use of, for and to easily enter and exit products, and written example, sign language buildings. descriptions of objects or interpreters, icons, or other actions. means of conveying messages. 23 Accessibility and mobility Persons with disabilities have the right to be able to access transportation and use it to get from one place to another, even if they use a wheelchair or cannot hear or see the displayed messages. Persons with disabilities can also face greater risks than the general population during humanitarian emergencies AMBULANCE because of physical barriers and because they are unable to access information and means of communication. Therefore, the state needs not only to make the country’s existing emergency response resources accessible to persons with disabilities too (including emergency housing and medical treatment), but also to provide response resources tailored to the needs of persons with disabilities (such as special signage and emergency response procedures). What are the main accessibility problems in Romania? This analysis of accessibility in Romania has revealed four main problems: 1 Limited access to the physical environment Some persons with disabilities cannot access their own homes, public buildings, and/or other public spaces or find it difficult to do so (for example, because of high curbs or a lack of elevators). 2 Limited access to the information and communications environment Some persons with disabilities find it difficult to access information on products and services or understand how to use specific communications technologies. Limited access to transportation 3 Some persons with disabilities are unable to access specific types of transportation such as buses or trains. Vulnerability to situations of risk and humanitarian emergencies 4 Persons with disabilities are at higher risk during disasters. 24 Accessibility and mobility 1 Accessibility and mobility Persons with disabilities should have physical access as well as access to information and communications about the products, services, and programs that society makes available to its members. Accessibility is key to the full participation of persons with disabilities in all spheres of life.30 Beyond the importance of ensuring the right to access in its own right, its enforcement is key to ensuring the rights of persons with disabilities in all aspects of life, including education, health, legal protection of rights, employment, social protection, and independent living (topics that will each be covered by chapters in the diagnosis report).31 Accessibility is directly stipulated by Art. 9 of the CRPD, though it is also systematically reflected in the other articles of the Convention.32 Definitions of key terms for accessibility BOX 1 In simple terms, accessibility means the capacity to use, understand, or approach something. In the laws and standards on accessibility for persons with disabilities, accessibility constitutes the requirements for the design or adaptation of products, programs, or services so that they can be used, understood, or approached by persons with disabilities. Reasonable accommodation means, according to the CRPD, necessary and appropriate modifications and adaptations that do not impose a disproportionate or unjustified burden when it is needed in a particular case, to allow persons with disabilities to enjoy or exercise all of their human rights and fundamental freedoms on an equal basis with others. Universal design means the design of products, environments, programs, and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. Universal design will not exclude assistive devices for particular groups of persons with disabilities where this is needed. Sources: The CRPD for “reasonable accommodation” and “universal design.” WHO and World Bank (2011) for “accessibility.” This report takes an integrated and continuous analysis approach to accessibility. It is integrated in that it analyzes the way in which access to the physical, information, and communication environment is ensured. It is continuous because it analyzes all of the sequences and access routes from a person’s home to any possible physical or virtual destination. Access is analyzed as a continuum of travel routes, which include the person’s own home, modes of transport, and buildings and other facilities that are destinations for persons with disabilities. The issue of ensuring access becomes urgent in crisis situations. Disasters often create access and mobility barriers for the entire population, but for persons with disabilities, crisis situations can have much worse negative effects if access to physical, informational and communication environment was not adequate in the first place or if there are no preventive or corrective actions taken to mitigate the specific risks that they each face. 30 The COVID-19 pandemic further reduced the participation of persons with disabilities in society. 31 Accessibility is a framework principle and a prerequisite for ensuring the inclusiveness of human rights - the main goal of the Convention - but it should also be seen as a complementary criterion for all other provisions of the Convention (WHO and World Bank, 2012). 32 The Convention articles which tackle the issue of accessibility and mobility and which will be reflected in this diagnosis are Art. 8, on awareness-raising on the issues faced by persons with disabilities, and on recognition (of abilities and contributions), Art. 9, on accessibility, Art. 11, on the obligation of the State parties to ensure the right to access to protection services in situations of risk and humanitarian emergencies, Art. 20, on ensuring personal mobility, and Art. 21, on freedom of opinion and access to information. The other articles of the Convention do tackle the accessibility issue in terms of access to services, but this will be discussed separately, when we describe the other sectors. 25 Accessibility and mobility Thus, the main problems tackled in this section are: 1. The limited access of persons with disabilities to the physical environment (their own home, public buildings, and public areas). 2. The limited access of persons with disabilities to the information and communications environment. 3. The limited access of persons with disabilities to transportation. 4. The vulnerability of persons with disabilities to situations of risk and humanitarian emergencies. 26 1.1 Limited access to the physical environment IN SHORT What are the rights of persons with disabilities? Persons with disabilities should be able to access their own homes, to use pedestrian areas, to enter and exit public buildings, to reach any place that they might want or need to reach, and to attend any event in any public space. What is the situation in Romania? According to the national survey of persons with and without disabilities conducted in 2020 for this report, in the month preceding the survey, far more persons with disabilities had difficulties in accessing their own homes or institutions than people without disabilities. The percentage of persons who… found it difficult to access public institutions or had difficulty accessing their own homes or were were not able to do so at all: not able to go outside their homes at all: 9% 4% 34% 26% 67% 57% Without disabilities With some disabilities With severe disabilities Of the 1,442 institutions that were inspected for this report (courts, county employment agencies (CEAs), county houses of public pensions (CHPPs), county health insurance houses (CHIHs), schools, and police precincts), no institution was fully accessible, while most were poorly adapted to the needs of persons with disabilities. 17% 89% 80% 88% With no adapted, With no accessible With no accessible With no accessible reserved, or signaled path to enter the access ramp entrance to the parking building building 27 30% 51% 63% 97% With no accessible With no accessible With no accessible With no accessible interior doors reception elevator/lifting bathrooms counter/office platform/sidewalks or escalators Source: Data from an inspection campaign conducted by the National Agency for Payments and Social Inspection (NAPSI) in March-August 2020 on a total of 1,442 institutions including appellate courts, district courts, first instance courts, CEAs, CHPPs, CHIHs, schools, and police precincts. What are the causes of this problem? There is no strategic approach to making all public buildings accessible to persons with disabilities: There is no strategy to address the problem of interrupted access routes from home to all public spaces. There is no comprehensive strategy to provide a fair solution to the problem of access that includes both public buildings from the center and the periphery of cities and those in rural areas. There is no strategy to create a framework for authorities in different sectors and local authorities to work together. The laws on accessibility standards are not updated and comprehensive, and they are sometimes even violated. New constructions are not subject to comprehensive compliance checks, and the constructors are not penalized if the buildings do not comply with the accessibility standards. The State Inspectorate of Constructions (SIC) is not enforcing the legislation as it should, and NAPSI has limited powers to sanction constructors who do not provide accessibility adaptations. Institutions do not allocate appropriate budgets and fail to make the necessary interventions to adapt the buildings in which they carry out their activities. What are the key changes that need to be made? It is necessary to create and implement an “Accessibility Compendium” that puts together the minimum specific requirements needed to ensure the accessibility of the physical, information, and communications environment. With regard to physical accessibility, the Compendium should include at least minimum specific requirements for the adequate planning of the built environment and of travel pathways so that these are accessible to persons with disabilities, knowledge of and compliance with the needs of persons with different disabilities in this regard, and training of representatives of central and local authorities who ensure or verify the accessibility of the physical environment, as well as the information and communications environment. Accessibility and mobility 1.1 Limited access to the physical environment A large proportion of persons with disabilities face considerable barriers to accessing the physical environment. Problems of access are omnipresent in society, from residential buildings, workplaces, public buildings, and transport infrastructure to other spaces of the built or natural environment. Access to the physical environment is one of the core aspects of the CRPD and a prerequisite to enable persons with disabilities to access social, educational, and healthcare services, to have a job, to engage in public participation, and to live independently in the community. The physical blockages that they face tend to differ depending on their type of disability and can occur at any point along their path through the physical environment, including within the person’s own home, when entering and leaving the home, when using pedestrian areas, sidewalks, and pedestrian crossings, when entering, exiting, and using the amenities and services in public buildings, and when accessing other public spaces. Description of the problem Persons with disabilities often have little access to institutions open to the public.33 In the World Bank’s survey of persons with and without disabilities carried out for this report, 33 percent of persons with severe disabilities reported that they had faced no difficulties in accessing public institutions during the month prior to the survey, while 35 percent reported that they did not even try at all to access these institutions (Figure 2).34 By comparison, amongst the persons with disabilities, only 6 percent had difficulties and 3 percent did not try to access them at all. The lack of access is also higher amongst persons with some disabilities as opposed to those without disabilities. Older data from 2012 indicate that barriers to physical access have persisted over time for the population with disabilities, while the population as a whole is generally dissatisfied with the country’s buildings and roads.35 Physical access to institutions open to the public during the previous month FIGURE 2 (percent) Persons... 3% Without disabilities 91% 5% 1% With some disabilities 66 % 17% 5% 12% 1 % With severe disabilities 33% 15% 14% 35% 3 % I had no difficulty I had slight difficulties I had great difficulties There were places I could not access Not applicable/I did not go Source: World Bank survey of persons with and without disabilities (2020). 33 These are institutions available for the public, not public institutions (belonging to the public sector). 34 The national restrictions and warnings put in place in response to the COVID-19 pandemic might have influenced the respondents’ behavior during the month prior the survey as some persons with disabilities might be seen as being more vulnerable to the effects of this virus. However, this is unlikely to explain the significant differences in percentages between population groups with different degrees of activity limitations. 35 The Romanian population as a whole is highly dissatisfied with their buildings, streets, and public spaces. As many as 56 percent of citizens in Bucharest, 38 percent of those in Cluj, and 37 percent of those in Piatra Neamț are rather dissatisfied or completely dissatisfied with the condition of their neighboring streets and buildings. Also, 41 percent of the citizens in Bucharest, 37 percent of those in Cluj, and 29 percent of those in Piatra Neamț are rather dissatisfied or completely dissatisfied with the condition of public spaces such as crossroads, markets, and pedestrian areas (European Commission, 2016). In 2012, about 35 percent of persons with disabilities in Romania and their families or carers claimed to have had difficulty using sidewalks and pedestrian crossings, either most of the time or occasionally (European Commission, 2012a). 29 Accessibility and mobility Persons with disabilities face significant difficulties in terms of accessing their own homes. In the survey of persons with and without disabilities conducted by the World Bank for this report, only 73 percent of persons with some disabilities and only 42 percent of persons with severe disabilities reported that they have no problems accessing their own home, compared to 96 percent of persons without disabilities (Figure 3). These percentages are even lower in rural areas, with 67 percent of the persons with some disabilities and 37 percent of the persons with severe disabilities, as opposed to 94 percent of the persons without disabilities It is also important to note that some persons with severe disabilities could not leave their own home at all (3 percent), and 13 percent of the persons with severe disabilities did not leave their residences at all during the month prior the survey. Percentage of persons with and without disabilities who had difficulty accessing FIGURE 3 their own home in the previous month Persons... 3% Without disabilities 96% 1% With some disabilities 73% 17% 5% 4% With severe disabilities 42% 20% 19% 15% 3% I had no difficulty I had slight difficulties I had great difficulties There were situations when I could not enter Not applicable/I did not go out Source: World Bank survey of persons with and without disabilities (2020). In a thematic36 inspection carried out by the National Agency for Payments and Social Inspection (NAPSI) in 2020, none of the institutions inspected was fully accessible. In 2020, appellate courts, district courts, first instance courts, county employment agencies (CEAs), county houses of public pensions (CHPPs), county health insurance houses (CHIHs), police precincts, and schools were inspected NAPSI found that the biggest accessibility problems were with toilets and access to and from buildings. The majority of the inspected entities had no accessible route to the building, no accessible ramp, and no accessible doorway to the building (Figure 4). The recorded values are not significantly better by the sector of activity of the institutions inspected or by their funding source (central budget versus local budget).37 For instance, 97 percent of the appellate courts, district courts, and first instance courts, 98 percent of the CEAs, 96 percent of the CHPPs, 91 percent of the CHIHs, 100 percent of police precincts, and 95 percent of schools did not have any accessible toilets. 36 As part of its social inspection duties, NAPSI evaluates the unrestricted access of persons with disabilities to the physical, informational, and communications environment in accordance with the provisions of Law no. 448/2006. This is just one of the themes of the inspections that it carries out periodically, with some others being the way in which social assistance benefits are granted and the compliance of the social service providers with the minimum quality standards. 37 Of all of the institutions covered during this inspection, only schools are financed by different central and local budget sources, with the specific costs for “investments, capital repairs, consolidations,” which facilitate accessibility works, being funded by the local budget (this type of funding is called “complementary funding”). The other institutions are fully financed from the central budget. 30 Accessibility and mobility FIGURE 4 Public institutions with no physical accessibility by accessibility criteria, 2020 With no adapted, reserved, or signaled parking, 17% even though there is one With no accessible path to enter the building 89% With no accessible access ramp even though 80% necessary With no accessible entrance to the building 88% With no accessible hallways 11% With no accessible interior doors 30% With no accessible reception counter/office even though there is one 51% With no accessible elevator/lifting platform/ sidewalks or escalators even though 63%* they are needed With no accessible bathrooms 97% Inaccessible institutions according to each of the criteria 100% Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August2020onatotalof1,442institutionsincludingappellatecourts,districtcourts,firstinstancecourts, CEAs, CHPPs, CHIHs, schools, and police precincts. Note: * The total for the criterion “without accessible elevator/lifting platform/sidewalks, or escalators or with no need for them” is only for 1,335 entities, as 107 entities gave no answer for this criterion. Implicitly, the percentage of accessible institutions is calculated as a share of the total number of 1,335. The accessibility inspections carried out between 2014 and 2019 also found very low proportions of accessibility. In this time period, 12 different kinds of public and private institutions were inspected: city halls, cultural institutions, gyms, shopping centers, hotels, education institutions, healthcare providers, community and county personal record offices, prefectures, and county councils. In the case of nine types of institutions, fewer than 10 percent of the total number of entities were completely accessible,38 and the inspection results indicated that there was a low level of accessibility in all of the criteria. The criteria with the greatest accessibility deficit were the availability of a sign language interpreter, toilet accommodation, and the availability of pictograms and adapted information panels (Annex-Table 6 and Annex-Table 7). The results by sector showed that, in the educational system, for example,39 only about 30 percent of school buildings had access ramps, and only 15 percent had toilets for persons with disabilities. Approximately 4,600 primary and secondary schools in Romania or 47 percent of the 9,786 schools registered with the Integrated Information System of Education in Romania – had no access ramps in 2017.40 According to a NAPSI report in 2016,41 only 398 of 5,627 education institutions at all educational levels were fully accessible.42 38 The inspections carried out between 2014 and 2019 checked the compliance of institutions’ accessibility with a smaller number of criteria than those used during the inspection carried out in 2020 upon the request of NAPSI and with methodological coordination provided by the World Bank. 39 To provide another example from another sector, 2019 data indicate that 96 percent of Public Social Assistance Services find it difficult to ensure accessibility for persons with disabilities (NAPSI, 2020a). 40 Ministry of Education (2017) - at the time of the publication, the Ministry of Education and Research. 41 NAPSI (2016). 42 NAPSI changed the inspection instrument in 2020, and the new instrument verifies a selection of key elements of accessibility from the Standard Rules on the accommodation of civil buildings and urban space to the individual needs of persons with disabilities no. 51/2012. 31 Accessibility and mobility The results of the qualitative research also point to the multiple challenges faced by persons with disabilities in navigating the physical environment. These challenges can take several different forms: (i) the complete lack of any accessibility elements in some cases; (ii) a lack of or improperly installed accessibility elements such as non- compliant ramps; (iii) unequal accessibility in urban localities, with the centers being more accessible than residential or marginal areas; (iv) the availability of accessibility elements only for persons with locomotor disabilities but not for other types of disabilities, such as visual disabilities (the lack of tactile paving surfaces); and (v) a lack of continuously accessible routes from the person’s own home to public spaces and buildings, thus limiting the mobility and autonomy of persons with disabilities. Difficulties in accessing the physical environment faced by persons with BOX 2 disabilities “[...] When you go to the Mayoralty, to the Department of Taxation, for whatever, an exemption from property tax for the house, the car, you have to climb a staircase that even healthy people cannot climb. And there is not even an elevator. The staircase is made of wood, spiral type, which makes it very difficult to climb. For now, I can still climb those stairs, but I have no idea what it will be like in 3, 4, 5 years.” (Person with motor disabilities, Brăila county) “If I go to the GDSACP alone, for example, after I leave my house, I walk slowly, you know, for 5 minutes, then it takes another 5 minutes, maximum 10, to wait for bus 35. I have to ride bus 35 for 7 stops, that is, let’s say, 20 minutes, and the GDSACP is across the street from where I get off the bus. So a total of 30 minutes. If I go with David, it takes me, let’s say, 10 minutes to decide what route to take to avoid high curbs and to be able to cross the street with the wheelchair. This means that bus 35 is clearly not an option (because they are not accessible). So I have to wait for the trolley. Trolleys do not come as often as bus 35 does. From where I get off, at the seventh trolley stop, to the GDSACP, I have to walk for two more stops. So, alone, it takes me 30 minutes to get to the Directorate, with the child, one hour.” (Parent of a child with motor disabilities, in a wheelchair, Prahova county) “Both access points to the bridge over the Timiș River were blocked because of some construction works, so you could no longer go up on one side and down the other side.” (Person with motor disabilities, Timiș county) Source: World Bank qualitative research (February-May 2020). Explanation of the problem The need for a national accessibility strategy There is no comprehensive accessibility strategy at the national level.43 A long- term national strategy is necessary because of the very low level of accessibility of all public buildings, including those managed by central, county, and local authorities as well as those who provide direct services for persons with disabilities such as the General Directorate for Social Assistance and Child Protection (GDSACPs) in each county, city halls, and county and local pension houses. This strategy should have a long-term design, with clear deadlines and milestones and sources of funding at both the central and local levels, and it should include incentives and penalties, a systematic control mechanism, claim and complaint mechanisms for beneficiaries, and a system for monitoring and evaluating progress and results. As its overall objective, the strategy should ensure full accessibility to the physical, information, and communications environment. 43 The issue was mentioned in the NSPD 2016-2020: “there is no firm commitment by local and central authorities to ensure physical access within a given period of time.” 32 Accessibility and mobility Various strategies have highlighted the lack of accessibility to physical infrastructure, but the implementation of those actions has been limited and there has been no outcome assessment. NSPD 2016-2020 included an objective related to the accessibility of the physical environment, but none of the suggested actions has been fully implemented.44 Different sectoral strategies include context analysis or strategic planning elements that are relevant to the problem of physical accessibility. The National Strategy for Health 2014-2020 mentions the issue of old facilities and the difficulty of making hospital infrastructure accessible, but the Action Plan45 only mentions making accommodations for persons with disabilities as an observation related to one of the strategic directions or measures and assumes that European Funds will be the main funding source. The Strategy for the Modernization of Educational Infrastructure 2017-2023 specifies that the accessibility of school infrastructure in Romania should be extended to include all of the dimensions of physical infrastructure that are necessary for students with special needs (such as specific furniture, toilets accommodated for students with physical disabilities, or access ramps), but it does not propose any specific actions. Integrated design of continuous routes in the public space There is a lack of continuously accessible routes for persons with disabilities from one location to another. This is caused by poor coordination between institutions and an uneven commitment to ensuring the right of access to the physical environment for persons with disabilities. The qualitative research shows that, in many cases, there are discontinuities and different accessibility levels along routes through public areas, depending on which institutions are in charge of each segment. For example, owners’ associations are usually responsible for shared areas in blocks of flats, while mayoralties are responsible for most public spaces such as carriageways or pedestrian crossings, and public or private transport companies are responsible for public transport stops. There are significant territorial disparities in the level of physical accessibility. Previous research indicated the uneven accessibility of the physical environment, with significant differences even between areas within the same city, with central areas having better options for persons with disabilities than residential areas.46 The qualitative research also suggests that there are severe accessibility problems in rural areas, but there is no systematic research about this as yet. This shows the lack of coherent and comprehensive urban and mobility plans. Territorial development, urban and mobility planning documents are not elaborated in an inclusive manner that covers the special access needs of persons with disabilities. Territorial development, urban and mobility plans are the documents that offer the general framework and concrete major elements for designing and rehabilitating the built space and for ensuring mobility.47 These planning documents should be designed to also integrate the access needs of persons with disabilities, 44 World Bank (2019). 45 Ministry of Health (2014). 46 Drăguțescu et al. (2014). 47 Spatial and mobility planning uses a series of strategic documents at a national level, at different levels of territorial organization that should be related to each other: (i) territorial development plans at national, regional, county, inter-municipal, inter-urban and inter-county, peri-urban and metropolitan level are the territorial strategic planning documents that establish the general framework of long-term spatial development and through which public sectorial investments are correlated to this field; (ii) mobility plans have as their main target: “improving the accessibility of the localities and their connection with each other, the diversification and the sustainable use of means of transport (via air, water, rail, car, bicycle or pedestrian) from a social, economic and environmental standpoint, as well as the good integration of different mobility means and transport;” and (iii) general, zonal and detailed urban plans are the regulatory instruments for the coordination of urban development at the level of localities, protected areas and some specific plots (The methodological rules on the enforcement of Law no. 350/2001 on land planning and urbanism and on the development and update of urban planning documentations from February 26, 2016). 33 Accessibility and mobility but they currently contain few references to their rights.48 The future design of territorial, urban and mobility plans that supports the implementation of the rights of persons with disabilities is important from the perspective of heeding to the CRPD requirements regarding the accessibility of the built space and transportation, and also to the European policy framework. One of the initiatives of “The Strategy for the Rights of Persons with Disabilities 2021-2030” project of the European Union refers to the emphasis that the European Commission will place on the development by the Member States of local mobility plans by also taking into account the needs of persons with disabilities.49 The enforcement of the right of access to the physical environment also requires cooperation among different administrative territorial units. This is particularly necessary among authorities from several ATUs to ensure that certain elements of public works, such as carriageways, are designed or rehabilitated to become accessible and that there is coordination between districts, cities, and adjacent localities and between different villages in a commune. There is currently no functional mechanism to ensure that ATUs methodologically coordinate the implementation of legal provisions on building accommodation in a unitary manner. Nor are there any coordinated intervention strategies at the municipal, county, or zonal levels that would ensure that all urban planning departments applied the same procedures and, thus, increased the continuity of access for persons with disabilities. The National Agency for Payments and Social Inspection (NAPSI) and the State Inspectorate of Construction (SIC) have no instruments to check the continuity of accessible routes, only of separate elements. The institutions responsible for checking the accessibility of the physical environment are organized by types of institutions rather than according to continuous mobility routes for persons with disabilities. Even though all of the components of the physical environment are affected by barriers, it is clear that no such continuity of routes exists at present. Nevertheless, the route continuity analysis is key, not only for understanding the situation but also for prioritizing interventions to enhance the accessibility of public space. Accommodations on one segment of the route should be correlated with those on other segments, and above all, they should fully open up essential routes for persons with disabilities. Legislative completeness and coherence The provisions of different laws related to involving NGOs that represent the interests of persons with disabilities in the control of accessibility of constructions are not consistent.50 Local authorities have the legal obligation through Law no. 448/2006 to include representatives of NGOs representing persons with disabilities in the reception commissions for any public works that concern accessibility. This includes construction or building adaptation works in the case of public buildings or of buildings built from public funds.51 However, a different law, GD no. 343/2017, 48 From the documents available to the public, one can identify few detailed urban plans, for example, regarding the development of some elements that increase accessibility. 49 European Commission, https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/12603-Disability-rights- strategy-for-2021-30. 50 The articles that explicitly require the accommodation of the physical environment, included in the main laws in this area, are the following: 61-63 and Art. 65 of Law no. 448/2006; Art. 37, 38 and 40 of GD no. 268/2007 on the methodological rules for the enforcement of Law no. 448/2006; Order no. 189/2013 approving the technical standard “Rules on the accommodation of civil buildings and urban areas to the individual needs of persons with disabilities, code NP 051-2012 - Review NP 051/2000;” and Law no. 50/1991 on the authorization of construction works. In the period between 2016 and 2020, there were no amendments to the national legislation that would be relevant for the accessibility of the physical environment. 51 According to Law no. 448/2006, these include: (i) public utility buildings, access routes, public housing, public modes of transport and their stops, taxis, passenger trains and the platforms of the main train stations, parking spaces, streets and public roads, and public phones and (ii) heritage and historical buildings. 34 Accessibility and mobility which governs procedures in the field of public construction, does not specify this obligation.52 The qualitative research indicates that local authorities often fail to include representatives of relevant NGOs representing the rights of persons with disabilities. The Rules no. 51/2012 on accommodating civil buildings and urban areas to the individual needs of persons with disabilities are not respected. Rules no. 51/2012 define the standards for the technical characteristics of buildings to make them accessible for persons with disabilities. Representatives of local public authorities whom we interviewed mentioned that non-compliance with these standards occurs at different stages as follows: (i) tender procedures for the award of public works do not explicitly include the accessibility criteria because this would increase costs; (ii) construction works are carried out by private developers with no compliance with the accessibility rules;53 and (iii) urban planning departments of mayoralties issue construction permits that do not comply with the accessibility criteria. The qualitative research indicates that the accessibility works are often performed after the construction works have been finalized and only in specific cases when NAPSI orders that remedial actions must be taken. Even then, the accommodation works tend to be minimal and fail to take into consideration the needs of persons with disabilities. Effective construction approval, inspection, and penalties mechanisms in place The enforcement of the approval, inspection, and penalties for lack of accessibility complains remains weak. The State Inspectorate of Construction (SIC)54 is the authority in charge of checking that construction projects comply with the law and of the way in which local public administration bodies issue construction permits. The SIC does not publish any information to show whether they have verified that projects have complied with the legal accessibility criteria or if any penalties have been imposed for irregularities. The SIC has not performed any accessibility inspections since 2016, only inspections concerning the implementation of other laws.55 The Rules no. 51/2012 are not mentioned among the normative documents that guide the SIC’s activities in the list of documents on the institution’s website.56 Construction permits issued by mayoralties sometimes do not comply with accessibility criteria. Construction permits are issued by mayoralties. The permits should be granted “only pursuant to the legal provisions in the field, so as to enable unimpeded access of persons with a disability certificate” and apply to public utility buildings, works financed from public funds, and private buildings whose residents are persons with disabilities that submit a specific application for this purpose.57 The 52 At the finalization of the construction work, the reception commission has the role to examine that it complies with all legal provisions. The commission is composed of a representative of the investor, a representative of the public administration, 1-3 specialists in the field of the particular type of public works, and representatives nominated by the State Inspectorate of Constructions, the inspectorate for emergencies, the direction for culture in case of constructions related to historical monuments (Art. 11 of GD no. 343/2017 for the amendment of GD no. 273/1994 regarding the approval of the Regulation for the reception of construction works and related installations). 53 According to the qualitative research, institutions generally comply with other sets of rules such as those on fire safety (Rules on the design of civil buildings in terms of operational safety requirement no. 068/2002), seismic risks, or thermal safety, unlike the rules governing the accommodation of civil buildings and urban areas to the individual needs of access of persons with disabilities (Rules no. 51/2012). 54 Art. 33 of Law no. 10/1995 says: “The SIC shall exercise state inspections for the unitary enforcement of legal provisions of construction quality in all stages and components of the construction quality system, shall identify any non-compliance, shall apply the penalties and measures provided by law, and shall order the cessation of non-compliant works.” 55 The SIC last carried out inspections of accommodations for persons with disabilities in March 2016 on 450 public institutions, following a request submitted by the former Ministry of Regional Development and Public Administration (currently, the Ministry of Development, Public Works, and Administration – MDPWA), but no data are available on their findings. 56 Legislation, the Regulation of organization and functioning, programs and strategies. 57 Art. 63 of Law no. 488/2006. 35 Accessibility and mobility interviews with NGO representatives organized as part of the qualitative research indicated that, during the process for issuing construction permits, documentation is not always requested on the plan’s compliance with accessibility criteria, even though the applicants have to submit extensive documentation to prove that it conforms to other criteria. NAPSI has limited authority to propose remedies for any deficiencies of accessibility in construction. This is because it is authorized only to check accessibility compliance after the project is complete but is not involved in the construction process. Also, it has only limited human and financial resources and has many other responsibilities including auditing the quality of social services checking the administration of funds allocated from the state budget for the payment of social assistance benefits. In its annual accessibility inspections, it checks only a limited sample of different types of institutions. For example, in 2019, it inspected 1,034 city halls, performance venues, museums, libraries, sports facilities, and shopping centers. Moreover, even though only some of the remedial actions that it recommends are implemented by the inspected institutions, NAPSI rarely applies fines. In 2019, it identified 928 buildings with accessibility problems and recommended 3,427 remedial actions, but only 146 sanctions were applied, of which 145 were warnings and only one was a fine. Of all of the remedial actions, 12 percent were reported by NAPSI to have been implemented at the end of the campaign. When NAPSI identifies accessibility issues that fall under the remit of other institutions, it notifies those institutions (such as urban planning departments in mayoralties, Public Health Directorates, or the SIC). Planning of expenses for ensuring reasonable accommodation expenditure in public institutions’ budgets Most public institutions have no multi-stage reasonable accommodation plan. Such a plan should cover several years and should include timely budgeting for priority interventions, which should be chosen in consultation with the persons with disabilities who will benefit. Given budget restraints and the need for many necessary adaptations, rehabilitation works should be adequately planned and budgeted for in an incremental timeline. According to the interviews with representatives of public institutions organized as part of the qualitative research, reasonable accommodations funds are often not included in their budgets, and when they are included, it is usually only in reaction to a NAPSI inspection. Even these adaptations to address the problems identified during NAPSI’s inspection visits are often minimal and of poor quality. This reactive decision-making model does not enable participative planning, that complies with the legislative standards and is informed by the lived experience of persons with disabilities. Coordination among social protection authorities on public works decisions The authorities at the central and local levels who coordinate social policies on the needs of persons with disabilities have no clear influence over decisions about municipal works and land planning. This report identified some cases when GDSACP representatives took action to solve problems faced by persons with disabilities in accessing public buildings. For example, in one case, the GDSACP requested that the County House of Public Pensions should provide access to persons with disabilities. In other cases, mayoralty representatives negotiated with the owners’ associations of 36 Accessibility and mobility blocks of flats to create an accessible route to the personal apartment of a person with disabilities and provided support for the necessary construction work. However, social services intervene in such cases only as a result of complaints filed by citizens, and their authority is weakened because they have no specific powers granted by law. Awareness of rights among persons with disabilities The obligations of institutions derived from disability rights are not internalized or understood by decision-makers or the general public. In the qualitative research, persons with disabilities pointed out instances when their rights were not observed or supported by decision-makers and administrative personnel from public institutions and sometimes by persons without disabilities who used the services provided by those institutions. Although the access of persons with disabilities to many public buildings and facilities is frequently limited, they rarely use claims and complaints procedures. According to data made available by the National Council for Combating Discrimination (NCCD), it received only a few dozen discrimination complaints regarding the access to public buildings on the grounds of disability in 2019.58 However, it is not clear from the NCCD data how many of these complaints were related to obstacles to physical access. According to the interviews with persons with disabilities organized as part of the qualitative research, they do not always perceive blockages of access to the physical environment as forms of discrimination against their own rights. Some persons with disabilities are not aware of their own rights, most likely because of their lack of prioritization on the public agenda. According to the World Bank survey of persons with and without disabilities, more than one in five persons with disabilities do not think that public institutions should be made physical accessible regardless of budgetary constraints or technical difficulties. The percentage of persons with disabilities who did not consider that access should be ensured, did not know what answer to give, or refused to answer was higher than the equivalent share of persons without disabilities – 21 percent compared to 16 percent. Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA), the Ministry of Development, Public Works, and Administration (MDPWA), the Ministry of Transport, Infrastructure, and Communications (MTIC), the Ministry of Research Innovation and Digitalization (MRID), and the Authority for the Digitalization of Romania (ADR) to draft and approve an “Accessibility Compendium” that brings together sets of minimum specific requirements59 necessary to ensure the accessibility of the physical (including transport), information, and communications environment,60 according 58 NCCD (2020). 59 The minimum requirements specified by the Compendium must guide the elaboration of new normative provisions, providing the technical specifications and measures necessary for making the physical environment accessible, and complete the process of implementing this legislation, so that it responds to the needs of persons with disabilities as best as possible. These normative provisions need to be designed by an inter-disciplinary commission that includes architects and engineers as well as specialists in the social field, and then it needs to be validated by other specialists in the field and developed in close collaboration with organizations that represent persons with disabilities. 60 The law should state the institutions involved and define their responsibilities and ways for them to work together for the purpose of: (i) implementing accessibility measures; (ii) methodological coordination for ensuring accessibility; (iii) monitoring accessibility outcomes; (iv) funding accessibility; and (v) implementing control, sanction, complaint, and petition mechanisms. 37 Accessibility and mobility to the CRPD. With regard to physical accessibility, this document should include at least minimum specific requirements regarding: Respecting the principles of universal design and accessibility in the process of harmonizing the General Urban Plan (GUP) with the Urban Mobility Plan. Concrete responsibilities on following the observance of the accessibility and universal design principles of the representatives of non-governmental organizations of persons with disabilities included by the local public administrations in the reception commissions of public works, under the provisions of Law no. 448/2006. Adapting workplaces in order to increase the employment rate of persons with disabilities. Developing the accessibility assessment tool as part of the process of issuing urbanism certificates and construction permits. The way of elaborating the course materials for the training of representatives of central and local authorities involved in ensuring and verifying the exercise of the right of persons with disabilities to access the physical environment (as well as the information and communications environment). Assessing the need to adapt the physical environment (as well as the information and communications environment) in order to ensure equal opportunities. Training regarding the use of access technologies and assistive technologies and devices, or live assistance. 2 The NARPDCA to roll out public awareness campaigns regarding barriers to physical accessibility and giving positive examples of physical access for persons with disabilities. 38 Accessibility and mobility 1.2 1.2 Limited access Limited to the access information to the and information and IN SHORT environment communications environment communications What are the rights of persons with disabilities? CREDIT CARD Information and communications should be as available to persons with disabilities as to persons 0000 000000 000000 without disabilities. Information and communications accessibility is about access to products and services used by everybody, as well as to ICT (information and communications technologies) products and services such as phone applications. An increasingly wide range of basic services is also being provided online, such as purchasing consumption products, administering wages and social benefits, banking, and fiscal services. It is vital that this trend should become an opportunity and not an additional barrier for persons with disabilities. For instance, it is possible that persons with learning and cognitive disabilities might find it difficult to surf the Internet unless they are assisted. Ensuring that persons with disabilities can access information and communications requires that they be able to use appropriate means of communication such as sign language, Braille, or assistive technologies such as text-to-speech software or icons. What is the situation in Romania? According to the national survey of persons with and without disabilities conducted in 2020 for this report, in the month preceding the survey, far less persons with disabilities than those without disabilities accessed information related to services and institutions open to the public or used the internet. The percentage of persons who… found it difficult to access information did not use the Internet at all: related to services and institutions open to the public or could not access it at all: 29% 27% 50% 58% 68% 74% Without disabilities With some disabilities With severe disabilities 39 Of the 1,442 institutions that were inspected for this report (schools, county employment agencies (CEAs), county houses of public pensions (CHPPs), county health insurance houses (CHIHs), courts or police precincts), only four made information accessible, and only 101 provided accessible means of communication. 4 /1.442 institutions with 101 /1.442 institutions with accessible accessible means of information communication What are the causes of this problem? The Rules no. 51/2012 do not provide enough technical details about how to achieve information and communications accessibility. The legal framework for making the websites of public sector institutions accessible has only recently been established and will not be completely implemented in 2021. The documents describing the policies and programs of public authorities are not published at all or in an accessible format. Landline and mobile telephony and Internet service providers do not have any special package offer tailored to persons with disabilities. There are not enough sign language interpreters whose services can be legally employed because of the barriers they face to become certified and because the law does not allow for flexible working arrangements. Sign language is not used enough in television broadcasts. What are the key changes that need to be made? It is necessary to create and implement an “Accessibility Compendium” that could address the issues identified by specifying minimum requirements for the communication and information accessibility of services open to the public (including their websites), as well as for communicating with and consulting persons with disabilities. It is necessary to develop a set of regulations for sign language interpreters. It is necessary to draw up a guide to writing public documents using easy-to-read and easy-to-understand language. Accessibility and mobility 1.2 Limited access to the information and communications environment Persons with disabilities need support to access a wide range of products and services offered in the information and communications environment. In some cases, these products and services are aimed at the whole population and will need to be adapted to the specific needs of persons with disabilities. In other cases, they are products and services specifically for persons with disabilities. Information and communications infrastructure can provide persons with disabilities with alternative ways of accessing the products and services that are available in the physical environment for persons with a specific type of disability. For instance, persons with visual disabilities who cannot see the physical exhibits in museums can be provided with descriptions through audio recordings. Sometimes, information and communications are a complementary component of products and services that exist in a physical format, such as instructions to access a building. Other times, they relate to services and products that exist only as part of the sphere of information and communications technology (ICT). Moreover, some of these virtual products are entirely dedicated to information and communication, such as social media platforms. It is important to ensure the access of persons with disabilities to all of these types of products and services in the information and communications environment. A growing range of basic services are now delivered online, and it is essential that persons with disabilities should not be excluded. The process of transferring services online has been accelerated by the physical interaction constraints caused by the COVID-19 pandemic. Paying for products, paying wages and social benefits, providing banking services, and paying taxes are examples of essential services that are being delivered online to a growing number of people. The COVID-19 pandemic has increased the importance of telework, telemedicine, and e-learning. The literature generally discusses ICT, including virtual communications, as a way to “level the playing field” for persons with disabilities and to create an environment that provides equal opportunities for all.61 However, it is important to explore the difficulties that might prevent persons with disabilities from accessing ICT so that the process of increasing the importance and spread of virtual services becomes an opportunity to increase social inclusion rather than creating new barriers for them. One example of such barriers is the difficulties often faced by persons with learning and comprehension disabilities in trying to navigate the online environment. Customizing ICT is a way to increase the access of persons with disabilities to goods and services and to circumvent the barriers that prevail in the physical environment. Technologies can be adapted to the particular abilities of specific groups of persons with disabilities, using such methodologies as Braille, sign language, text-to-speech software, sound signals, pictograms and specific signs, and voice commands, thus facilitating alternative access “to all areas of life, including education, employment, e-government and civic participation, financial inclusion, and disaster management.”62 Thus, as with access to the physical environment, accessing the informational and communications environment is an inter-sectorial policy issue.63 61 Raja (2016). 62 World Bank (2018a). 63 The key factors related to the limited access of persons with disabilities to the information and communications environment are covered by Art. 3, 4, 9, and 24 of the CRPD, specifically: Art. 3 (f); Art. 4 para. (1) (f), (g), (h); Art. 9 para. (1) (b), para. (2) (d)- (h); Art. 21; and Art. 24 para. 3. 41 Accessibility and mobility Description of the problem Persons with disabilities have less access to information and communication services provided by institutions for the public, with persons with severe disabilities being the most disadvantaged. In 2020, about 70 percent of persons without disabilities had no difficulty accessing this kind of information (on forms, websites, and public relations), while the proportion was only 49 percent of persons with some disabilities and 30 percent of those with severe disabilities (Figure 5).64 Access to information is more difficult for the elderly and for persons with low education levels, and there are major disparities between persons with and without disabilities, between different age groups, and between those with different educational attainment levels (Annex-Table 8). Access to information provided by public institutions during the previous FIGURE 5 month (percent) Persons... 1% Without disabilities 70% 6% 21% 2 % 1 % With some disabilities 49% 6% 41% 2% With severe disabilities 30 % 8 % 7 % 53% 2 % I had no I had slight I had great Not applicable/I did not difficulty difficulties difficulties look for such information There were situations when I could not access the information I wanted Source: World Bank survey of persons with and without disabilities (2020). Most persons with disabilities do not use the internet to access information from public institutions and services, and many of those who do use it report finding it difficult to use. Due to the COVID-19 restrictions, virtual access has become more important than ever, and many service providers have taken steps to deliver their services online. Nevertheless, the use of internet is limited among persons with disabilities even in this context - 53 percent among persons with some disabilities and 66 percent among those with severe disabilities (Figure 6). The proportion of persons with some disabilities and the proportion of persons with severe disabilities who did not face difficulties in obtaining information are significantly lower in the rural areas as opposed to the urban areas (Annex-Table 9). Also, the proportion of women with some disabilities and with severe disabilities who reported that they do not have difficulties in accessing information was lower than that of men. Difficulties in accessing the desired content online (percent) FIGURE 6 Persons... Without disabilities 72% 6% 21% 1 % With some disabilities 41% 4% 53% 1 % 2 % With severe disabilities 25% 5% 66% 3% I had no I had slight I had great Not applicable/ difficulty difficulties difficulties I do not use the Internet There were situations when I could not access at all what I was interested in Source: World Bank survey of persons with and without disabilities (2020). 64 As in the case of the data that described access to the physical environment, there was a significant proportion of persons with disabilities (41 percent) who stated that they did not have access to any information from public institutions and services. Some of these people may not even have any means by which to access that information, such as a computer or mobile phone. 42 Accessibility and mobility In 2020, the accessibility of information and communications for persons with disabilities is an exception rather the norm (Figure 7). The NAPSI inspections of 1,442 entities within eight types of public institutions carried out as a result of a request from the NARPDCA with World Bank support found that only 4 institutions made their information accessible and only 101 provided accessible methods of communication. Only about 13 percent of the institutions inspected had any authorized sign language interpreters or interpreters for deaf-blind persons, while no interpreter was available in 84 percent of the institutions. Moreover, in only 36 percent of the institutions was there a designated person to assist persons with disabilities. Public institutions with no information and communications accessibility by FIGURE 7 accessibility criteria, 2020 Lack of accessible information 100% The information on how to access the institution 44% is not accessible No signs in Braille language 96%* The institution does not have a webpage 53% accessible for persons with visual disabilities No adapted pictograms 80%** No proper electronic displays 88% Lack of accessible communication 93% No authorized sign language interpreters/ 87% interpreters for deaf-blind persons No designated person to assist persons with disabilities 64% Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020. Notes: Total sample: 1,442 institutions, more specifically 15 appellate courts, 42 district courts, 171 first instance courts, 48 CEAs, 48 CHPPs, 42 CHIHs, 536 police precincts, 540 schools. * Of the 54 institutions which did have Braille language signs, in 14, such signs were placed in locations which made them difficult to identify, and in the case of 1 entity such signs were not placed in adapted spaces, and caused confusion. ** Of the 284 entities which had adapted pictograms, in 6 entities the pictograms were not easy to understand and in 4 entities they were not placed at proper height. There is no available information on the access of persons with disabilities to telecommunications and electronic services. However, Romania’s population has little access to such services compared with other European countries.65 65 According to Eurostat, in 2015, 25 percent of the population could not afford internet access compared with a 6 percent average for the EU-27 (isoc_cismt indicator https://appsso.eurostat.ec.europa.eu/nui/show.do?dataset=isoc_cismt&lang=en). Mobile access to the internet was 32 percent in Romania compared with an EU-27 average of 39 percent. Only 19 percent of people aged between 25 and 64 years old who were retired or inactive in Romania (among whom there were many persons with disabilities) had mobile access compared with 24 percent in the EU-27 as a whole (indicator isoc_ci_im_i, https://appsso. eurostat.ec.europa.eu/nui/show.do?dataset=isoc_ci_im_i&lang=en). 43 Accessibility and mobility Explanation of the problem The services that should be provided to ensure the accessibility of information and communications include a wide range of adaptations. These accommodations can vary from signage for wheelchair accessible entrances, Braille language signage in public and private spaces, access to sign language interpreters for TV broadcasts, and accessible websites. ITC is increasingly used to facilitate communication and information for persons with disabilities and is dynamic field where technological innovation is constantly creating new opportunities. However, products and technologies should be designed to comply with the principle of universal design (defined in Box 1) in order to avoid creating new types of exclusion of persons with disabilities. Full standards on access to information and communications, including electronic services The Rules no. 51/2012 do not include explicit and detailed standards regarding the informational and communications accessibility of available physical goods and services. The Rules detail technical standards for ensuring access to the physical environment, but they do not provide equally precise standards on information and communications access. They only mention that certain types of assistive methods should be offered (such as Braille) and provide various visual icons that suggest how this could be achieved in practice. In recent years, important progress has been made in terms of increasing accessibility to electronic communications for persons with disabilities. Decision no. 160/2015, amended by Decision no. 1012/2019 of the National Authority for Management and Regulation in Communications, stipulates that providers of electronic communications must facilitate the access of users with disabilities to landline and mobile telephone or internet services. The decision set the conditions for selling adapted service packages, for purchasing and testing equipment, recommended prices, the number of minutes of mobile telephone service, minimum internet connection speed, and other technical standards. However, this decision was only taken in 2019, and persons with disabilities have lacked any support in this regard for a long time beforehand. Availability of sign language interpreters There is an acute shortage of certified sign language interpreters in Romania, yet re-authorization as a sign language interpreter is difficult. The authorization based on which the sign language interpreters carry out their activity is limited to two years,66 the premise being that signing, just like any other language, can be forgotten if not practiced. After those two years, the interpreter needs to provide evidence to confirm that she or he has performed 200 hours of interpretation services (or at least six months as proven by an employment contract) to obtain an extension of the authorization. Since many interpreters work part-time and there are no flexible working arrangements (such as hourly work), they often lose their authorization. In practice, given the very low number of certified interpreters available, organizations frequently have to use the services of persons who hold no formal qualification. The qualitative research revealed such examples in the banking sector and in notary services. 66 Joint Order no. 1640/2007 Methodology on the authorization of sign language interpreters between the Ministry of Labor, Family and Equal Opportunities, the National Authority for Persons with Disabilities, and the Ministry of Education, Research and Youth (at present, the MLSP, NARPDCA and the Ministry of Education). 44 Accessibility and mobility BOX 3 Difficulties in accessing the informational and communications environment faced by persons with disabilities “Obviously, the attitude of the institutions changes when we are present. Many of them [persons with disabilities] tried to solve their problems on their own. Some of them came back to us with pieces of paper from the civil servants behind the counters, saying they could not understand them or asking them to provide various documents, which in turn they did not understand, so they needed someone to translate everything to them in sign language and came to us. And we try to figure things out and, if we cannot, we go to the institution, we accompany them.” (Sign language interpreter, Brăila county) “People’s behaviors affect her, they do not have the patience necessary to write things down, they talk very fast, and she cannot read their lips. Some are more understanding and agree to write things down on a piece of paper, but not everyone is patient and not everyone agrees to this. Even if they answer her in writing, they answer briefly, without too many explanations or details.” (Person with hearing disabilities, Timiș county, translation provided by the sign language interpreter) Source: World Bank qualitative research (February-May 2020). The adequate use of sign language in the audio-visual environment The implementation of existing provisions on sign language by the TV channels is negligible. Audio-Visual Law no. 504/2002 regulates the operation of the National Audio-Visual Council (NAVC) and mandates at least 30 minutes of sign language interpretation daily during broadcasts by both national and local channels. Many TV channels provide only the minimum number of minutes. Moreover, NAVC data show and the qualitative research confirmed that this sign language interpretation is often used outside prime time (frequently, during one of the news shows broadcast during the daytime). Another important provision was related to the share of the total screen area allocated to the sign language interpretation. Upon a request by the Ombudsman, NAVC recently established67 that the sign language interpretation should occupy no less than one-sixth of the total screen area. However, the qualitative research indicated that persons with disabilities believe that this proportion is still not sufficiently large for many of the most frequently used types of screens. Standards for public institutions’ websites Legal provisions requiring the websites of public institutions to be accessible have been developed over recent years, but their enforcement process has not been finalized yet. GEO no. 112/2018, which was approved by Law no. 90/2019, enshrined in Romanian law several obligations derived from Directive no. 2016/2012 of the European Parliament and of the Council requiring public organizations to make their websites and mobile applications accessible. The main institution in charge of monitoring and inspecting for compliance with the GEO no. 112/2018 provisions is the Authority for the Digitalization of Romania, an institution under the jurisdiction of the Prime Minister’s office. The timeline for the implementation of the accessibility measures was planned to start in September 2019 for newly launched websites having as deadlines September 2020 for websites launched before the adoption of the Law, and June 23, 2021 for making mobile applications accessible. Accessibility standards for the websites of public sector institutions are not mandatory for all institutions. GEO no. 112/2018 provides for various circumstances when governmental websites and applications may be exempt from complying with these accessibility criteria, including the websites of institutions that do not deliver 67 NAC (2020). 45 Accessibility and mobility essential services or services for persons with disabilities and websites that, in order to comply, would require disproportionate efforts. However, there is no comprehensive list of institutions offering “essential services” and “services for persons with disabilities.” Awareness of their own rights among persons with disabilities A quarter of persons with disabilities do not believe or do not know that institutions must put a high priority on ensuring that their rights to access the information and communication environment are respected regardless of the context. This became clear in the World Bank survey of persons with and without disabilities. Three percent more persons with disabilities held this view than persons without disabilities. Among all persons who were surveyed, 13 percent believed that there are circumstances that may justify a failure to do so, 2 percent believed that this requirement should not be imposed on institutions, 9 percent stated that they did not know the answer to the question, and 1 percent did not reply. Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA), the Ministry of Development, Public Works, and Administration (MDPWA), the Ministry of Transport, Infrastructure and Communications (MTIC), the Ministry of Research, Innovation and Digitalization (MRID), and the Authority for Digitalization of Romania (ADR) to include, as a minimum, the following elements in the Accessibility Compendium to ensure that the information and communications environment is accessible to persons with disabilities: A set of standards for ensuring that information and communication is accessible across public services, including, for instance, the requirement to provide sign language interpretation. Minimum standards for checking and monitoring the accessibility of websites. Additional specifications regarding the use of sign language interpreters in broadcast shows.68 Assessing individual needs to ensure alternative types of written or spoken expression. Consultation with persons with disabilities in order to involve them in social life. 2 The NARPDCA, the Ministry of Education, and the National Qualifications Authority (NQA) to develop a set of regulations for sign language interpreters, covering: (i) training requirements; (ii) accreditation; and (iii) standards of costs depending on the specificity of the work performed. 3 The Ministry of Labor and Social Protection (MLSP), the MRID, the ADR, the NQA, and the NARPDCA to develop, revise, and approve an occupational standard for occupations related to the field of website accessibility. 4 The NARPDCA to draw up a guide to writing public documents using easy-to- read and easy-to-understand language. 68 Add the requirement to broadcast accessible shows in prime time and review the provisions concerning the size of the sign language interpreter’s window, which should take up one-fourth of the full screen. 46 Accessibility and mobility 1.3 1.3 Limited access Limited to transportation access to transportation IN SHORT What are the rights of persons with disabilities? According to the UN Convention on the Rights of Persons with CRPD United Nations Convention on the Disabilities, the Romanian government must take appropriate measures to give persons with disabilities the chance “to live Rights of Persons with Disabilities independently and be fully included and participate in the community.” One of these measures is access to all types of transportation: water, air, road or rail. water air road rail What is the situation in Romania? According to the national survey of persons with and without disabilities conducted in 2020 for this report, in the month preceding the survey, far less persons with disabilities than those without disabilities used modes of transport, and many of these persons had difficulties accessing them. Had some degree of difficulty accessing The percentage of persons who used a mode of the mode of transport: transport: 3% 68% 11% 77% 29% 82% Without disabilities With some disabilities With severe disabilities 47 What are the causes of this problem? BU SS PA SS There is no legislation that sets out Persons with disabilities underuse their both the standards for vehicle urban and interurban free transport accessibility and how the system for tickets. penalizing non-compliant operators Many private transport operators do should function. not participate in the ticket reimbursement program. They can opt to participate, but they are not required to take into account the travel needs of persons with disabilities. Not enough public information is available on which routes persons with disabilities can use and the kind of accessibility that these routes provide by type of disability. What are the key changes that need to be made? It is necessary to create and implement an “Accessibility Compendium” that could address the issues identified. It should include, among others, minimum standards for accessible modes of transport, and the obligation of all public transport vehicles to comply with minimum accessibility standards in order to be approved by the Department of Motor Vehicles. Accessibility and mobility Dumitru Dumitru is affected by a locomotor disability with an unidentified medical cause. At one point, he began to experience drop attacks while walking in the street. He recalls one such episode. “People would pass by me, they didn’t help, instead they would stop three meters away from me and laugh. They didn’t have to help me, but they didn’t have to stare either, there was nothing to laugh about, I felt like crying. A nine-year-old stopped by me and asked: ‘Sir, how can I help you?” After some time, he could no longer make it across the street during the length of the green light, so he started using a wheelchair. The fact that he bought a car gave him more independence: “This car is twenty-four years old. I am attached to it because it’s adapted. I’ve had it for eleven years. I have a reserved parking spot at my block, and it is signposted for persons with disabilities. I always find other cars parked on my spot. I call the local police, and they say that it is the job of the traffic police. They eventually come after an hour or two, but, in the meantime, I must wait there. Then I have to bring the papers proving that this is my spot.” Dumitru believes that for persons with disabilities accessibility “is essential.” He wishes that both the means of transport—trains, taxis, subways—and the medical services should be adapted to the needs of persons with disabilities and for accessibility to be reflected in the attitudes of those around him. 49 Accessibility and mobility 1.3 Limited access to transportation Ensuring that persons with disabilities can access different modes of transport is an integral part of ensuring that they can access public facilities and spaces. The right to unimpeded mobility is stipulated in the CRPD, Art. 9 (Accessibility) and 20 (Mobility), which indicates that States parties shall take effective measures to ensure the greatest possible mobility, while encouraging autonomy of choice of mobility means and ensuring affordable costs. Goal 11 of the Sustainable Development Agenda 2030 is titled “Sustainable cities and communities: make cities and human settlements inclusive, safe, resilient, and sustainable.” Together with Goals 4, 8, 10, and 17, this goal is part of the disability-inclusive component of the development community’s sustainable development agenda until 2030. Description of the problem The proportion of persons with disabilities who can access modes of transport is substantially lower than the share of those without disabilities. According to the World Bank survey of persons with and without disabilities, only 23 percent of persons with some disabilities and 18 percent of those with severe disabilities used any mode of transport during the week prior to the interviews, compared to 32 percent of persons without disabilities (Annex-Table 10). Only 1 percent of persons with some disabilities and 5 percent of those with severe disabilities reported that they could not use a mode of transport because it was not adapted to accommodate their type of limitation. Among those who used public modes of transport, 65 percent of persons with severe disabilities and 85 percent of those with some disabilities reported having no difficulties, compared to 96 percent of persons without disabilities (Figure 8). Percentage of persons with and without disabilities who had problems FIGURE 8 accessing public transport in the previous week among those who used public transport in the previous week Persons... Without disabilities 96% 4% With some disabilities 85% 13% 1% With severe disabilities 65 % 22 % 14% No difficulty Some difficulty Great difficulty Source: World Bank survey of persons with and without disabilities (2020). Previous assessments have highlighted the low level of accessibility of transport infrastructure for persons with disabilities. A 2015 report indicated that public transportation is partially accessible, but, in general, it does not have any mobility accommodations for persons with visual disabilities.69 In 2013, of the total 5,236 modes of transport inspected by NAPSI, only 2,055 were considered to be accessible in accordance with the Rules No. 51/2012.70 Another report in 2013 analyzed the transport access situation in municipalities and found that only two municipalities among the total 37 county capitals surveyed had tactile paving marking the edge of platforms or the entrance to the mode of transport from the station, and even these two cities had them in only some of their stations.71 69 CLR (2015). 70 NAPSI (2014). 71 IPP (2013). 50 Accessibility and mobility Persons with disabilities have less access to the public space and face difficulties when moving between locations. Taken together with the limited accessibility of the public physical environment, including sidewalks, other pedestrian and transition areas, and public transport stations, transport access deficits describe a situation in which persons with disabilities have extremely low access to and mobility within the public space. The qualitative research has highlighted, in turn, multiple mobility problems for persons with disabilities. Difficulties in utilizing means of transportation faced by persons with disabilities BOX 4 “It is a bit difficult for us because, if we take the tram, we fight with the drivers, who scold us for taking the tram, saying that it is not accessible, that it is difficult, that the ramp is stuck and so on, when, in fact, all they want is to just sit behind the wheel; and if we ask them to come and take down the ramps, all hell breaks loose, they say that they are not paid for this.” (Person with motor disabilities, Timiș county) “Drivers could inform persons with hearing disabilities that they are returning to the depot--many people get off, but she doesn’t realize why, stays on the bus and ends up at the depot. It is all about communication.” (Person with hearing disabilities, Timiș county, translation provided by the sign language interpreter) “There are a lot of persons with visual disabilities led by guide dogs [...] [W]hat are they supposed to do? Walk 30 kilometers because they happen to live in a village? This is the actual experience of a young woman whom I know, who was taken off the bus.” (NGO representative, Timiș county) “I talked to a passenger carrier and he said to me: instead of accepting your ticket and then spending half a year trying to get my money back, I would rather give you a free ride.” (Visually impaired person, Prahova county) “You know, every time I take the train, I have to ask in advance to have the train pulled to another platform or to have someone carry me... [laughs]. I am not very easy to carry, I weigh almost 100 kilograms. In the passageways, I cannot climb those stairs even using my crutches.” (Person with motor and visual disabilities, Prahova county) Source: World Bank qualitative research (February-May 2020). Explanation of the problem Implemented and monitored strategic framework Strategic documents issued by the Government of Romania for the period 2016 to 2020 call for enhancing the accessibility of transport, but no information is available on whether the proposed actions have been implemented. The NSPD 2016- 2020 proposed a legislation review to ensure the inclusivity of the public procurement system for transport, to train transport operators to assist persons with disabilities, and to launch research programs to identify technical accommodation solutions. However, there is no information on whether or not these measures were ever taken. Even though the NSPD 2016-2020 also proposed the development of much-needed local accommodation framework plans, these have not materialized. Legal provisions on vehicle accessibility standards There are no legal provisions regarding minimum accessibility standards of vehicles, and no penalties for operators who fail to comply with them. Currently, there are no minimum accessibility standards for transportation. 51 Accessibility and mobility The Romanian Automotive Register,72 which homologates road vehicles and coordinates the periodic technical vehicle inspection process, operates in accordance with legislation that includes no accommodation standards. Therefore, the Romanian Automotive Register issues certificates that take no account of any accommodations for persons with disabilities, and NAPSI cannot sanction any modes of transport certified by the Romanian Automotive Register. Transport subsidies The free transport tickets to which persons with disabilities are entitled are underused. Law no. 488/2006 grants free urban and interurban transport to persons with severe or accentuated disabilities, and GD no. 1017/2018 specifies the reimbursement mechanism for interurban transport. According to data from the Ministry of Labor and Social Protection (MLSP),73 of the 733,470 persons with severe or accentuated disabilities who were entitled to free interurban transport in 2018, only 83 thousands actually exercised this right. Many private transport companies do not participate in the program, and it is not known to what extent the needs of persons with disabilities are covered. Persons with disabilities can apply for reimbursement for the costs of traveling with a list of companies that hold contracts with the GDSACP, but this list is not drawn up in consultation with persons with disabilities, so it does not tend to meet their travel needs. According to the qualitative research, many transport companies do not provide accessible free travel to persons with disabilities on certain routes, even the main ones. The joint Order of the Ministry of Labor and Social Justice and the Ministry of Transport no. 124/546/201974 for establishing templates for agreements concerning transport for persons with disabilities, does not facilitate the right to accessible transport for persons with disabilities. For example, in order to be reimbursable, trips can only be taken as round trips to and from the same stations. Moreover, the procedures for claiming reimbursement for travel costs from the carriers are burdensome,75 according to the qualitative research. These administrative problems contribute to the refusal by many private carriers to transport persons with reduced mobility. There are no mechanisms to sanction private transport companies that do not agree to reimburse the travel costs of persons with disabilities. The accessibility of modes of transport is often not ensured, and information on the degree of accessibility is not public. First, modes of transport are often inaccessible, according to the qualitative research. The costs involved in adapting them to the needs of persons with disabilities are high, and there is a lack of both incentives and penalties for operators to take this measure. Second, no systematic information on the number of accessible routes is made public, and there appears to be no information on the demand for accessible transport services. These information deficits make it difficult to plan to increase the mobility of persons with disabilities. Information should be made public on the availability of accessible routes, the capacity of modes of transport to pick up persons with certain types of disability (for example, how many seats exist for persons in wheelchairs), and waiting times for accessible modes of 72 The Romanian Automotive Register is the specialist technical body appointed by the Ministry of Transport, Infrastructure, and Communications (MTIC) as the competent authority in the field of road vehicles, road safety, environmental protection, and quality assurance. 73 MLSP press release, http://www.mmuncii.ro/j33/index.php/ro/comunicare/comunicate-de-presa/5562-cp-guvernul-bilete- calatorie-persoanelro-handicap-calatorie-gratuita-17072019. 74 At present, the Ministry of Labor and Social Protection, and the Ministry of Transport, Infrastructure, and Communications. 75 The application for reimbursement must be filled in by the person with disabilities and must list both their departure and arrival stations, while the transport operators must fill in the other fields. Then the coupon removed from the original travel ticket is submitted to the GDSACP by the person with disabilities together with the application for reimbursement. 52 Accessibility and mobility transport. It is not possible for policymakers to plan to improve transport services for persons with disabilities or for transportation companies to adopt measures to make their own fleet accessible without information from municipalities on the volume of demand from persons with disabilities. Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA), the Ministry of Development, Public Works, and Administration (MDPWA), the Ministry of Transport, Infrastructure and Communications (MTIC), the Ministry of Research, Innovation and Digitalization (MRID), and the Authority for Digitalization of Romania (ADR) to include, as a minimum, the following elements in the Accessibility Compendium to ensure the accessibility of public transport: A set of minimum requirements for accessible modes of transport. The obligation for public road transport companies to comply with minimum accessibility standards in order to get the approval of the Department of Motor Vehicles. The obligation for public transport companies to provide both online and offline information about accessible and free-of-charge routes for persons with disabilities. Making services related to the field of public transport accessible with the use of software applications.76 76 Such as applications for purchasing tickets online. 53 Accessibility and mobility 1.4 Vulnerability to situations 1.4 Vulnerability of risk to situations and of risk and IN SHORT humanitarian emergencies humanitarian emergencies What are the rights of persons with disabilities? Persons with disabilities are exposed to greater risks than persons without disabilities during disasters or in situations of risk because of their limited access to the physical environment, to information, and to means of communication. Hence, the state needs to provide persons with disabilities not only with access to the same response resources that are available to the general population but also with special response resources tailored to the needs of persons with disabilities. What is the situation in Romania? According to the national survey of persons with and without disabilities conducted in 2020 for this report, persons with disabilities say that they would find it very difficult to ensure their own safety in a disaster. Those who would have most difficulty are those with severe disabilities. The percentage of persons with disabilities who believe it would be difficult to take any action during a disaster: 79% 75% 75% 46% 112 would have great would have great would have great would have great difficulty leaving their difficulty leaving their difficulty reaching a difficulty calling the home on their own or building on their own safe place outside emergency services would not be able to or would not be able their home on their or would not be able do so at all. to do so at all. own or would not be to do so at all. able to do so at all. there is no household or family member who could reach me fast enough in the event of an emergency or disaster 12% 6% of persons with severe disabilities VS of persons without disabilities 54 Accessibility and mobility What are the causes of this problem? Romania is not sufficiently prepared to respond to disasters. When added to the lack of infrastructure accessibility in the country, this makes persons with disabilities especially vulnerable in the event of a disaster. The country’s disaster response plans do not include any special procedures tailored to the needs of persons with disabilities. The maps of risk areas that the authorities should have prepared do not exist for all regions of the country or for all types of risk (such as floods or earthquakes), and those that do exist are neither up-to-date nor comprehensive. Some institutions and services do not comply with the rules governing risk prevention, and these violations are not penalized. There are very few specific response procedures for persons with disabilities, and those that do exist are tailored only to those with locomotor disabilities. There is an emergency telephone number for persons with hearing or speech disabilities (113) that supports text messaging. However, no assessment has been made so far to establish to what extent this service is adapted to the communication needs and capacities of persons with disabilities. What are the key changes that need to be made? It is necessary to establish a fast emergency response procedure for persons with disabilities in case of humanitarian emergencies or situations of risk. It is necessary to assess how well the emergency telephone number is meeting the needs of all persons with disabilities, and improvements must be made based on the assessment results. 55 Accessibility and mobility 1.4 Vulnerability to situations of risk and humanitarian emergencies In the event of disasters, persons with disabilities may be more vulnerable than the rest of the population because of the pre-existing environmental barriers. There are various different kinds of collective risk that range from natural disasters (such as fires, earthquakes, landslides, or floods) to public health risks and armed conflicts. Various resources can be used to prevent, mitigate, and tackle the negative impact of such disasters on persons with disabilities, some of which are similar to those used for the benefit of the general public (such as public shelters, emergency housing, and medical treatment), while others need to be customized according to the needs of the persons with disabilities (accessible exit routes, specific signaling, and specific fast intervention procedures). Art. 11 of the CRPD mentions the obligations of the States Parties in the event of situations of risk and humanitarian emergencies. Description of the problem The vast majority of persons with severe disabilities and a significant share of the persons with some disabilities believe that it would be difficult or even impossible for them to take any action on their own in the case of a disaster. According to the quantitative survey of persons with and without disabilities, the lowest level of autonomy in emergency situations was reported by persons with severe disabilities, 44 percent of whom believed that they would not be able at all to leave their home by themselves, while 33 percent believed that they would not be able at all to leave the building by themselves, and the same proportion believed that they could not get to a safe place outside their house, while 30 percent believed that they would not be able to contact emergency services by themselves. The proportion of persons with severe disabilities who stated that they would not be able to manage by themselves increases with age. There are significant differences between persons with some disabilities and those without disabilities. A significant share of persons with disabilities estimated that they would need assistance from others in the case of catastrophic events to seek refuge (Figure 9). Percentage of persons with and without disabilities who state it would be impossible FIGURE 9 for them to take action in case of a disaster, by type of action (percent) Get out of the house by myself Get to a safe space outside my residence by myself 6% 2% 20% 7% 44% 33% Get out of the building by myself Call emergency services 2% 2% 8% 10% 33% 30% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). 56 Accessibility and mobility Persons with disabilities have fewer people to turn to in the case of disasters, either neighbors or family. About 22 percent of persons with severe disabilities reported that they did not have a neighbor to whom they could turn in the case of a disaster, compared to 9 percent of persons without disabilities (Annex-Table 11). Moreover, 18 percent of the persons with severe disabilities stated that they could not fully rely on a household or family member who could reach them fast in an emergency, compared to only 11 percent of the persons without disabilities. These data indicate that, in the event of crises, some persons with disabilities would be trapped and in a situation of risk in their own homes. The COVID-19 pandemic has exacerbated the risks for institutionalized persons with disabilities. As of September 25, 2020, out of a total of 55 thousand persons living in residential services for the elderly, children, or adults with disabilities nationwide, 1,017 became infected, 3,398 recovered, and 325 died after being infected with the new virus.77 Institutionalized persons with disabilities have a higher risk of contracting the virus than those living in their own homes because of the daily risk of living in close proximity to other residents and carers, while the risk of extreme outcomes is higher because of their pre-existing medical conditions. Explanation of the problem Romania is a country that is very vulnerable to disasters, and the limited accessibility of the physical, information, and communications environment for persons with disabilities increase the extent to which they are at risk. The systematic country diagnostic carried out by the World Bank in 201878 highlighted Romania’s vulnerability to natural disasters, particularly to the risk of floods, draughts and earthquakes, which have affected thousands of households over time and have resulted in significant economic damage, both at the macro and individual levels. The diagnostic cautioned about the impact of such catastrophic situations on the physical infrastructure,79 which has a particularly negative effect on the poor, among whom persons with disabilities are disproportionately represented compared to the share of this group in the total population. Preparedness for emergency situations Risk monitoring is deficient in Romania. Local authorities and independent organizations at the ATU level are supposed to develop hazard and risk maps, but those that have been produced tend to cover only some natural risks and to be incomplete and not up-to-date, while certain areas and cities have no risk maps at all.80 GD no. 663/2013 establishes the obligation to develop flood vulnerability maps by 12 areas located along river basins. GD no. 846/2010 requires the development of flood vulnerability maps by county and local authorities. Also, the Methodological Rule on the development and content of natural landslide risks of 200381 requires that local 77 NARPDCA (2020). 78 World Bank (2018a). 79 For example, the country diagnostic (World Bank, 2018a) indicated that more than 75 percent of the population (65 percent of whom are in urban areas) are vulnerable to earthquakes and highlighted the fact that increasing the country’s economic and social resilience is critical to achieving sustainable and inclusive growth. The report estimated that Romania is significantly more vulnerable than other EU member states, since only 80 percent of the population have access to early warning systems in case of disaster and 70 percent of the property of the poor population is vulnerable to destruction. Bucharest, the country’s capital, faces the highest risk of all European capital cities and is among the 10 most vulnerable cities in the world with 2,563 blocks of flats at high seismic risk, which house 10,577 households (Armaș et al., 2017). Also, flood risks are higher in counties with low per capita GDP and large rural populations like Romania. 80 World Bank (2018a). 81 Published in the Official Journal, Part I no. 305 of May 7, 2003. 57 Accessibility and mobility authorities develop maps in order to monitor this specific risk. However, there is no systematic or integrated approach to mapping all types of risks, although the General Inspectorate for Emergency Situations is the single entity in charge of coordinating emergency intervention entities. Many institutions do not comply with risk protection rules. One of the major ways in which the population is vulnerable is that different types of entities do not comply with protection rules and that relevant authorities are not capable of ensuring their compliance. One example is the significant number of facilities with no fire safety protections82 in place, such as many schools from the rural area. Interventions adapted to the needs of persons with disabilities Emergency action plans prepared at the county level do not include any special provisions for persons with disabilities. The only measure sometimes foreseen in these plans is having a county-level staff member who is responsible for risk management coordination for this group. There are no intervention procedures and protocols customized to the risks faced by persons with disabilities. The GIES is responsible for the management of emergency situations at national level. In states of emergency, national, county, and local departments for emergency situations are responsible for coordinating rescue teams and organizing evacuations and other necessary interventions.83 There is no specific plan for interventions targeting persons with disabilities, either as a part of the general intervention plans or as a specific document or procedure developed for this category of the population. The management process should be a phased process covering preparedness for specific situations, the public response during and after the event, and recovery after a disaster.84 However, the few procedures targeting persons with disabilities only cover some of these stages, usually recovery or interventions after the event but rarely risk management interventions. The few occasions when action and intervention plans target persons with disabilities, their measures are focused on persons with locomotor disabilities. Most specifications included in the intervention guides85 specifically emphasize wheelchair users and specify, for example, the need to place guidance signs at a proper height or to ensure wheelchair accessible routes that enable evacuation. The specific needs of persons with other types of disabilities are not addressed in the emergency plans.86 At the national level, there is an emergency call system for persons with hearing or speech impairments, but its use is not monitored. The Single National Emergency Call System 112 was developed in 2015 and provides a specific extension for persons with hearing or speech impairments, number 113. Persons whose number is pre-registered as belonging to the target group can request emergency services by sending an SMS message to the number 113. However, the latest technical reports on the 113 service do not include any information on the number of subscribers or the number of requests for help.87 82 Government of Romania (2020a). 83 Pursuant to the Government Emergency Ordinance no. 21/2004 on the National Emergency Situations Management System, county emergency situations committees are established under prefect coordination (Art. 11 (1), (2)). 84 Inclusive preparedness may be failing to meet the needs of persons with disabilities in each of the disaster management stages (Federal Office of Civil Protection and Disaster Assistance, 2017). 85 IES Vaslui (2015). 86 IES Sibiu (2018). 87 Government of Romania (2020b). 58 Accessibility and mobility Emergency intervention personnel are not adequately prepared to respond to the needs of persons with disabilities. These personnel are not included in any training programs on the rights of persons with disabilities. Therefore, to improve the protection of persons with disabilities in emergency situations, it is important to extend this training to cover anyone involved in carrying out response interventions in emergency situations. Recommended measures The following measures are recommended: 1 The Ministry of Internal Affairs (MIA) and the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to establish a procedure for the evacuation and rescue of persons with disabilities in situations of risk and humanitarian emergencies. 2 The Special Telecommunications Service (STS) to assess the functionality of the 113 application and its availability for persons with disabilities, and upgrade it according to the assessment’s conclusions. 59 2. Effective 2. protection Effective protection of the of the rights persons of persons rights of with disabilities with disabilities Nicu Nicu was born in Bucharest and has a mild intellectual disability. He lived with his parents until their divorce, after which his mother was admitted to a social services center. By the time he was seventeen, Nicu had already lived in six placement centers. After his mother’s death, he inherited a studio. A few months after he got his first job, he found out that he had been placed under guardianship by the GDSACP when he was in the state’s care, because it was believed that this would help protect his inheritance. Thus, Nicu could not legally represent himself and, according to the law, he was not allowed to have a job. After a trial that lasted two years, during which he received the support from the NGO that also provided him with services for independent living and another human rights NGO, Nicu regained his legal capacity. Effective protection of rights 2 Effective protection of the rights IN SHORT of persons with disabilities What are the rights of persons with disabilities? Persons with disabilities must have equal recognition before the law in order to exercise their fundamental rights (such as the right to work, to marry, to have children, and to vote) and in general to be able to make decisions about all aspects of their lives. Persons with disabilities must have effective access to justice to be able to defend their rights. This implies that persons with disabilities should be able to: Address the judicial system (the police, prosecutor’s office, or courts) when they think that their rights have been violated. Receive a fair trial and the settlement of their case within a reasonable time. What are the main problems related to the effective protection of the rights of persons with disabilities in Romania? The analysis of the situation in Romania indicated two major problems: 1 The limited possibility to make decisions Some persons with disabilities are not allowed or supported to make their own decisions. 2 The limited access to the justice system Some persons with disabilities cannot seek solutions to the violation of their rights because they are unable to access a lawyer or legal institutions and procedures adapted to their needs. 61 Effective protection of rights 2 Effective protection of the rights of persons with disabilities All State parties must ensure the effective and equal protection of the rights of persons with disabilities. Persons with disabilities must benefit from equal recognition before the law to exercise their fundamental rights, such as the rights to work, marry, have a family, or vote, as well as make decisions on all issues of their lives; equal recognition before the law is needed to ensure that decisions of any individual have legal effects. Persons with disabilities must be entitled to equal access to justice in case their rights are being violated, and they must get an effective remedy.88 Only by meeting these two requirements can persons with disabilities participate in a truly inclusive society.89 The main problems tackled in this chapter are: 1. The limited possibility of persons with disabilities to make decisions. 2. The limited access that persons with disabilities have to all of the procedural stages of the justice system. 88 The right to remedy means any type of recovery and redress, including compensation, restitution, rehabilitation, and satisfaction. The right to an effective remedy is foreseen by Art. 13 of the European Convention on Human Rights and Art. 47 of the Charter of Fundamental Rights of the European Union, and is a basic component of access to justice. An effective remedy must be accessible, be capable of providing redress regarding the applicant’s complaints, and offer reasonable prospects of success (European Union Agency for Fundamental Rights and the Council of Europe, 2016: 102). 89 The vision and key points of this chapter are based on Art. 12, 13, 14, 15, 16, and 17 of the CRPD. 62 Effective protection of rights 2.1 2.1 The possibilityto limitedpossibility Limited makedecisions tomake decisions IN SHORT What are the rights of persons with disabilities? Persons with disabilities have the right to equal recognition before the law. This implies that they are recognized as having legal capacity: the capacity to have and exercise all their rights and to make decisions about their daily lives. Persons with disabilities must be able to choose their dwelling, sign an employment contract, decide on their medical services and treatment and manage their finances. They must be able to manage their own lives as they wish, within the limits of the same laws as for persons without disabilities. What is the situation in Romania? In Romania, there are four main categories of persons with disabilities who lack the possibility to make their own decisions and therefore cannot exercise their legal capacity: 1. Persons placed under guardianship The persons placed under guardianship are persons whom a court of law has found to not have the necessary judgment to exercise all of their fundamental rights and freedoms, to represent themselves before the law, or to sign contracts. The court appoints a guardian to make the decisions on behalf of the person with disabilities and to represent the person before the authorities. There are no official data regarding the number of persons placed under guardianship, and the existing estimates vary widely—from 77 thousand persons placed under guardianship (according to the Ministry of Internal Affairs) down to only 17 thousand persons (according to data collected for 2019 for this report from the Guardianship Authority Services). The guardian must submit an annual report on the circumstances of the persons placed under guardianship. In 2019, reports were submitted only for one-quarter of the persons placed under guardianship as reported by Guardianship Authorities. There is no single unitary practice among the Guardianship Authorities regarding the sanctions to be applied to the guardians who do not submit these annual reports. 2. Persons admitted involuntarily Persons who are involuntarily admitted in hospitals and psychiatric wards are also deprived of the possibility to make decisions. The Committee on the Rights of Persons with Disabilities (CRPD Committee), which monitors the implementation of the Convention on the Rights of Persons with Disabilities, considers involuntary admission as a form of deprivation of freedom and a violation of several rights stated in the Convention. 63 Effective protection of rights 3. Other persons encountering obstacles to conclude legal documents BANK Even those persons with disabilities who are not placed under guardianship find it difficult to exercise their legal capacity. For example, banks sometimes refuse to open accounts for blind persons arguing that they cannot read the contract. Also, persons with psychosocial or intellectual disabilities who have been declared “alienated” or “debilitated” in court cannot get married under the law. 4. Persons who need support in making decisions Persons with disabilities need support more often than the general population when making important decisions regarding their own life (46 percent of persons with disabilities compared to 32 percent persons without disabilities). One-third of persons with disabilities do not have access to such support every time they need it, and 10 percent have never had access to any support at all. Every person with disabilities who needs this support should receive it, regardless of the type of decision that they need to make from opening a bank account, to voting, to searching for a job, to adopting a child. What are the causes of this problem? On July 16, 2020, the Constitutional Court of Romania ruled that all persons with disabilities must be recognized as equal before the law, should no longer be placed under guardianship, and should receive support in making decisions. However, in order for this ruling to become effective, the law regarding the legal capacity of persons with disabilities must be repealed, and other normative acts that prevent persons with disabilities from making their own decisions must be amended. There is no legislation that regulates decision-making support services. The persons who provide this kind of support are supposed to explain information in ways that can be understood by the person with disabilities or to assist communication. This support should be provided: Without putting pressure on the person, without intimidating the person, and without suggesting what decisions should be taken. Only in the way that the person needs it, depending on what the person deems important. For the shortest time necessary. What are the key changes that need to be made? The laws restricting the legal capacity of persons with disabilities must be revised or repealed. It is necessary to create the legislative framework in order to regulate decision-making support services. Decision-making support services should be piloted in certain local communities as a first step before implementing them nationwide. 64 Effective protection of rights Valentina When Valentina was about eight months old, she was diagnosed with optic nerve atrophy. Currently, she only has 5 percent of normal vision. A teacher from the special school that she attended discovered her talent for Romanian language and literature. Thanks to her, Valentina started writing short texts, and later stories. Now she is twenty-seven years old and continues to write, inspired by ancient mythologies. Valentina wishes to work, she has taken training courses, asked for support, yet she cannot find a job. Valentina is placed under the guardianship of her mother. A few years ago, based on wrong indications from the County House of Public Pensions, her mother believed that in order for Valentina to receive a disability pension, she had to be placed under guardianship, so she took the necessary steps. Valentina wishes to be removed from the guardianship of her mother, to be able to vote, sign papers, or work. 65 Effective protection of rights 2.1 Limited possibility to make decisions Those persons with disabilities who are deemed unable to make their own decisions do not have the opportunity to exercise their fundamental rights. The right to make fair or wrong decisions regarding one’s own life is a natural right of all persons. Yet there are persons with disabilities who are considered unable to decide for themselves by courts of law, doctors, by public services such as notaries or banks, or even by their own families or caregivers. These persons with disabilities are deprived of the opportunity to make decisions and exercise their rights and freedoms. This subchapter describes circumstances in which persons with disabilities face these barriers and the reasons behind them. Description of the problem In Romania, there are four main categories of persons with disabilities who are deprived of the possibility of making their own decisions: (i) persons placed under guardianship; (ii) persons involuntarily admitted to psychiatric facilities; (iii) persons who are not under guardianship but are faced with barriers in order to perform legal acts and conclude contracts; and (iv) persons who need support to make decisions. Persons placed under guardianship Legal capacity is instrumental for exercising civil, political, economic, social, and cultural rights, and cannot be conditioned by an actual or perceived deficit of mental capacity. Legal capacity means the capacity to make valid legal decisions, to engage in transactions, and to create, modify, or end legal relationships. Legal capacity is vital as it affects all fields of life, such as choosing a domicile, choosing a life partner and concluding a marriage, signing an individual labor agreement, or casting a vote. Any means of depriving a person with disabilities of their legal capacity by substituting their decision90 violates their fundamental rights. Mental capacity refers to the ability to make decisions, which varies from one individual to another, depending on social or environmental factors, or on the way such ability is assessed; it is distinct from legal capacity, which means the ability to hold rights and duties and to exercise them.91 The CRPD Committee has explicitly warned that perceived or actual deficits in mental capacity must not be used as a justification for denying or restricting anyone’s legal capacity. In many countries, the overlap of legal and mental capacity has led to the denial of the legal capacity of individuals considered unable to make decisions.92 Persons with disabilities placed under guardianship cannot be a party to the proceedings and are represented by legal guardians. Placement under guardianship involves the appointment of a person by a judge to make decisions based on what they considered to be the best interest of the person with disabilities whom they represent, 90 The decision is substituted when “a substitute decision-maker appointed by a third party takes decisions based on what he or she considers is in the best interests of the person concerned, even if that goes against the will of the latter. They include plenary and partial guardianship, judicial interdiction, conservatorship, conservatorship and mental health laws that allow involuntary treatment and commitment.” (Human Rights Council 2017b, para. 26). “These regimes have certain common characteristics: they can be defined as systems where: (i) legal capacity is removed from a person, even if this is in respect of a single decision; (ii) a substitute decision-maker can be appointed by someone other than the person concerned, and this can be done against his or her will; and (iii) any decision made by a substitute decision-maker is based on what is believed to be in the objective “best interests” of the person concerned, as opposed to being based on the person’s own will and preferences.” (CRPD Committee, 2014a, para. (27)). 91 CRPD Committee (2014a, para. (13)). 92 In various countries, the legal capacity of the persons considered incapable is denied according to one or several of three criteria: (i) some medical diagnosis indicating intellectual disability (status approach); (ii) an alleged negative consequence of the individual’s decision, a circumstance in which the doctor, for instance, decides on using a treatment against the subject’s will (consequence approach); or (iii) some deficiency assessed in terms of one’s ability to make decisions, that is one’s mental capacity (functional approach) (MDAC, 2013: 18-19). 66 Effective protection of rights even against her will. Art. 164 para. (1) of the Civil Code establishes three requirements for an individual to be placed under guardianship: (i) the person must be lacking mental capacity;93 (ii) the cause for their lacking mental capacity is “unsoundness of mind” or “mental retardation,” which must be established by a specialized medical assessment; and (iii) the lack of mental capacity means that a person cannot take care of their own interests. Placing a person under guardianship has two effects: (i) depriving the individual of legal agency94 and (ii) establishing legal guardianship.95 Once guardianship is established, the legal guardian can decide on behalf of the person who is deprived of their legal capacity. The stages involved in the placement under guardianship are described in Box 5. The stages of the process of placement under guardianship in Romania BOX 5 The process of placing a person under guardianship in Romania has several stages: 1. One of the persons referred to in Art. 111 of the Civil Code shall submit to the court of first instance in whose jurisdiction the person with disabilities is domiciled a request for the placement of the person under guardianship, which shall include a presentation of the facts suggesting “unsoundness of mind” or “mental retardation,” accompanied by the proposed evidence (as referred to in the Civil Procedure Code, Art. 194). Under Art. 111 of the Civil Code, placement under guardianship can be requested by: (i) the relatives of the person diagnosed as “alienated” or “mentally retarded;” (ii) the supervisor or tenants of the dwelling where the person lives; (iii) the local public community service for personal records when recording the death of a person or the notary public when initiating inheritance proceedings; (iv) courts of law when applying the criminal penalty of depriving a person of her parental rights; (v) local public administration bodies; (vi) care centers; and (vii) any other person. Even though Art. 111 is stipulated in the Chapter of the Civil Code titled Guardianship of the Minor, it also applies accordingly to the procedure of placing a person under guardianship. 2. Upon receiving the request, the court shall send copies of the request and of any supporting documents to the person to be placed under guardianship. The same documents shall be sent to the prosecutor in case the request was not submitted by him or her. 3. The prosecutor shall conduct the necessary investigations and shall obtain the opinion of a specialized committee. The prosecutor shall also obtain the opinion of the person to be placed under guardianship if the latter is admitted into a health care facility. If needed and until the decision regarding the placement under guardianship, the judge may appoint a special conservator to take care of, represent, and manage the assets of the person whose placement under guardianship was requested. The conservator is appointed with the consent of the person with disabilities, for a specified period of time and for solving a specific problem (Civil Procedure Code, Art. 167). 4. On the trial date, the court shall hear the person for whom placement under guardianship was requested and ask questions in order to ascertain her mental condition. If the person is not able to appear in court, she will be heard at her location. 5. The committee of specialized physicians and the health care facility where the person is admitted (if applicable) may issue an opinion regarding the need to make a longer-term observation of the mental state of the person for whom the placement under guardianship had been requested. Under such circumstances, if the observation cannot be conducted differently, upon requesting the prosecutor’s conclusion as well, the court may order the temporary hospitalization of the person in question for no longer than six weeks in a specialized health unit (Civil Procedure Code, Art. 936 to 942 on the Procedure of placement under guardianship). 93 The term used in Art. 164 is “discernment.” However, the choice to instead use “mental capacity” is intended to provide a clearer understanding of how the national legal provisions conflict with CRPD principles, as outlined by the CRPD Committee (2014a). 94 Legal agency is the ability to conclude legal acts and exercise rights and duties (Law no. 287/2009 on the Civil Code, Art. 37), while legal standing is the ability to hold rights and duties (Law no. 287/2009 on the Civil Code, Art. 34). Legal capacity encompasses both standing and agency, as emphasized also by the CRPD Committee (2014a, para. (13)). 95 Law no. 287/2009 on the Civil Code, Art. 169. 67 Effective protection of rights 6. Based on all of the information above, the Guardianship Court (the court of first instance) may issue a court ruling adjudicating the persons as legally incapacitated. 7. Once the ruling of the adjudication of incapacity becomes final, the Guardianship Court shall immediately appoint a guardian for the protection of the person adjudicated as incapacitated (Civil Code, Art. 170-174 and Art. 114-120). 8. Once the court ruling of placement under guardianship is final, the court that ruled it shall immediately communicate its content by submitting a certified copy: (i) to the civil registry office where the person’s birth is registered, so as to mark the guardianship status on the birth certificate; (ii) to the relevant health unit that will initiate the permanent surveillance of the person under guardianship; (iii) to the relevant cadaster and real estate registry to add this into the land book, if applicable; and (iv) to the trade registry, if the person under guardianship is a trader, an entrepreneur, or an economic operator (Civil Procedure Code, Art. 940). In Romania, depriving persons with disabilities of their legal capacity is unconstitutional. On July 16, 2020, the Constitutional Court of Romania (CCR) ruled that placing a person under guardianship on the basis of disability is unconstitutional.96 The CCR Plenary established that guardianship as legislated by Art. 164 para. (1) does not provide enough safeguards to ensure the enjoyment of all human fundamental rights and freedoms. The CCR judges indicated that Art. 164 para. (1) “does not consider the fact that there might be various degrees of incapacity, nor the range of one’s individual’s interests, [that guardianship] is not established for a certain period of time and is not subject to periodic review.” Although the process of placing a person under guardianship and the appointment of a legal guardian is defined in the law as a measure to safeguard persons with disabilities, this is contrary to the principles of the CRPD and the recommendations of the CRPD Committee. This inconsistency is explained by the following: The process of placing a person under guardianship does not respect the person’s rights, will, and preferences. The qualitative research found that the process of placing a person under guardianship is often initiated to make it easier for the guardian to manage the relationship between the person under guardianship and various public or private institutions, as well as the person’s assets and income. In other cases, this process is initiated to facilitate involuntary admissions or treatment without the person’s informed consent. The person to be placed under guardianship is rarely consulted about the guardianship and its consequences and is not involved in the process.97 This lack of consultation is often justified by the alleged inability of the person to understand – the lack of his or her mental capacity (see Box 6). Guardianship is established based on an assessment of mental capacity. The guardianship system, as per Art. 164 para. (1) of the Civil Code, is grounded in the assessment of mental capacity of the person to be placed under guardianship. The CRPD Committee insists on the obligation of State parties to review any legislation that allows the restriction of a person’s legal capacity on the grounds of psychosocial or intellectual disability, even if based on a psychiatric evaluation,98 or on classifications such as “imbecility, mental derangement or insanity”99 or on the basis of any other criteria of real or perceived deficiency. 96 The Constitutional Court of Romania, Press release of July 16, 2020, https://www.ccr.ro/comunicat-de-presa-16-iulie-2020/. The Court noted the violation of the constitutional provisions of Art. 1 para. 3, Art. 16, and Art. 50, as construed pursuant to Art. 20 of the Constitution, and to Art. 12 of the CRPD. The decision had not yet been published in the Official Journal of Romania no. 88/2021, https://www.ccr.ro/wp-content/uploads/2021/01/Decizie_601_2020.pdf (The decision began to take legal effect after its publication date). 97 This situation mainly affects institutionalized persons with intellectual and psychosocial disabilities who are placed under guardianship. 98 CRPD Committee (2016a, para. (23)). 99 CRPD Committee (2016a, para. (23)), CRPD Committee (2015a, para. (20)). 68 Effective protection of rights Guardianship limits the exercise of fundamental rights. Legal capacity is indispensable for the exercise of civil, political, economic, social, and cultural rights, and it is especially necessary for persons with disabilities to make decisions regarding their health, education, work and other areas of life. Deprivation of legal capacity limits de jure any possibility to conclude civil contracts (such as marriage, adoption, sales, or purchase agreements), exercise the right to vote, give consent to be admitted to health care facilities or receive treatment, and it interferes with the right to liberty. Guardianship is, with rare exceptions, a permanent measure. The CRPD Committee recommends that State parties should guarantee that measures regarding the exercise of legal capacity are applied for the shortest time possible and are subject to regular review by a competent, independent, and impartial authority or judicial body.100 Art. 117 of the Civil Code provides for the possibility – including by the persons placed under guardianship – to file requests to terminate guardianship, thus acknowledging their right to require the measure to be terminated. However, in practice, there have been very few rulings to suspend guardianship. The data reported by Guardianship Authority Services101 (GASs) indicate that less than 100 guardianships were terminated in 2019 in Romania.102 The qualitative research showed that there are judges, prosecutors, and heads of GASs who in their entire career had received no requests to have a guardianship measure terminated (see Box 6).103 The persons under guardianship are often in a conflict of interest with their appointed guardians. Conflict of interest is the situation in which the interests of the person with disabilities under guardianship conflict with those of their guardian. The CRPD requires the State parties to guarantee that the measures relating to the exercise of legal capacity are free of conflict of interest.104 There are several types of conflict of interest that frequently arise: The first type arises when a guardian is a representative or even head of a GAS. This means that they are in charge of monitoring and even sanctioning themselves (see Box 6). At the national level, on December 31, 2019, around 9 percent of the persons under guardianship had a guardian who was a GAS representative, with a higher percentage occurring in rural areas (14 percent versus 6 percent in urban areas). The second type of conflict of interest arises when a person under guardianship lives in a residential center, and their guardian is a representative of the center or of the GDSACP. Being in a restrictive residential environment can worsen conflicts of interest, especially when the institutionalized persons would like to file a complaint about the actions of their guardians. Around 2 percent of all persons deprived of their legal capacity in 2019 were in such a conflict. 100 CRPD, Art. 12 para. (4). 101 The institutions under local public administration authorities in charge of monitoring the fulfillment of the legal representatives’ responsibilities and proposing sanctions in case guardians fail to observe the rights of the individuals under guardianship. 102 Data collected by the NARPDCA and the World Bank between June and August of 2020 in 1,673 localities. The data were extrapolated to all 3,187 localities to enable national estimates. 103 This situation can be caused by: (i) a lack of knowledge of the persons under guardianship about their right to request termination of the guardianship or to have their guardian replaced; (ii) a lack of access to legal information or legal aid; (iii) a conflict of interest between the individual and their guardian; or (iv) the misconception that persons under guardianship can only communicate through a legal representative. 104 CRPD, Art. 12 para. (4). 69 Effective protection of rights The third type of conflict of interest emerges when the guardian is the local public authority (LPA). Art. 25 of Law no. 448/2006 on protecting and promoting the rights of persons with disabilities, republished, with subsequent amendments and completions, provides the opportunity to appoint the local public administration authority (either the local council or the Mayoralty) as a guardian. A conflict of interest can arise because the LPA also coordinates the activities of the GAS. At the same time, this situation legitimates the relationship between an institution and the person placed under guardianship, thus depriving the person with disabilities of a highly personalized support in the exercise of their legal capacities as recommended by the CRPD Committee.105 Around 3 percent of all individuals deprived of their legal capacity in 2019 were in such conflict. Conflicts of interest can arise even when the guardian is a family member. As the CRPD states, decision-making support measures must be free of any undue influence from the support person in a way that jeopardizes the authenticity of the decisions made by persons with disabilities or makes them act against their own will and preferences. Yet sometimes the family may change the decisions of the person under guardianship rather than provide them with the necessary support to take autonomous decisions and actions.106 There are no appropriate and effective safeguards to prevent abuse. The CRPD recommends that State parties should ensure that all measures that relate to the exercise of legal capacity include adequate and effective safeguards to prevent abuse. The measures should: (i) respect the rights, will, and preferences of the person with disabilities; (ii) be free of conflicts of interest and undue influence; (iii) be proportional to and adequate for the person’s situation; (iv) apply for the shortest time possible; and (v) be subject to regular review by a competent, independent, impartial authority or judicial body.107 Monitoring performed by the GASs is not effective. The GASs have to monitor how guardians fulfill their duties related to the person under guardianship, to receive and check the yearly reports submitted by guardians, and prepare social inquiry reports in response to any court requests. In 2019, only 59 percent of the persons under guardianship were monitored at least once throughout the year, though this varied considerably between Authorities. The qualitative research showed that monitoring sometimes only assesses how well guardians manage the assets and income of the persons under guardianship but does not try to identify other potential types of abuse (see Box 6). In certain cases, the GASs conduct their monitoring only via phone or in meetings at their headquarters, rather than by doing home visits. Guardians rarely fulfill their obligation to submit yearly activity reports. Submitting a yearly activity report is a procedure that obliges guardians to make an inventory of how they use the income and, if necessary, the assets of the persons under their guardianship with the aim of improving their living conditions and speeding up their rehabilitation. There is no form or template, nor is there any single established practice regarding the content of such reports, and the reports generally include only minimal information on how incomes or assets of the persons under guardianship are used. In 2019, reports were submitted for only 39 percent of persons under guardianship (with 105 When an institution is appointed as a guardian, the responsibility dissipates, and it is unlikely that a natural and trusting relationship will be established between an institution (legal person) and a natural person (person with disabilities). 106 The UN Special Rapporteur on the Rights of Persons with Disabilities, for instance, insists on providing a range of measures that relate to the exercise of legal capacity precisely to avoid situations in which persons with disabilities can be subject to abuse or manipulation by their family or relatives (Human Rights Council, 2017b, para. (57)). 107 CRPD, Art. 12 para. (4). 70 Effective protection of rights a significant difference according to the area of residence, 50 percent in urban areas versus 15 percent in rural areas). There is no practice common to all GASs in terms of sanctioning any guardians who fail to submit their annual report, and some GASs do not impose any kind of sanction for guardians who fail to observe this obligation (see Box 6). At the same time, GASs do not have the means to ensure that the income of persons under guardianship is spent according to their needs and desires, and that the report is proof that the goods and services purchased have been acquired by the persons under guardianship or in their interest. Examples where persons with disabilities have been deprived of their legal BOX 6 capacity in violation of the CRPD The process of placing a person under guardianship is not in line with the person’s rights, will, and preferences. “Some persons do not have a representative, but the people at the hospital refused us because they considered those [persons] lacked judgement, although are not assessed as such. We started initiating the process for guardianship for a young man who needed treatment and doctors would not provide it, they did not want to, and no one else could sign without legal capacity. We selected four out of 22 persons who definitely needed representation, plus two other files of persons with serious speech disabilities – only we can understand what they are saying.” (Social worker, maximum sheltered house) “[Persons under guardianship] mainly need representation in relation with all authorities, including the Pension House, the GDSACP, and the Social Assistance Directorate to access their rights. They also need representation for hospital admissions because the patient cannot give their consent. As they have some sort of alienation or mental retardation, institutions need someone’s consent. Families and caregivers generally provide that consent. But if the person does not have caregivers, the guardian has the responsibility to approve of the hospital admission. Those are the main reasons. And then there are the most important ones, those regarding the signing of legal documents by persons without judgement capacity. That is, if the individual deprived of their legal capacity owns some assets, any change to those must be made with the approval of the Guardianship Authority Service (according to the new Civil Code, such tasks are assigned to the guardianship court, but we have a special mandate from the guardianship court, as we signed a protocol with all courts of justice from our city).” (Municipality GAS representative) “The Guardianship Authority Service [...] carries out the social inquiry for the person indicated by the court. The person with disabilities is not heard in court; the court only requests information on the potential guardian.” (Municipality GAS representative) “I don’t want to have my mom as a guardian, I want to be able to make decisions on my own. My mother knows, and she agrees that guardianship is an obstacle for me. [...] I felt like the most insignificant person on Earth. I still do. I tried to persuade my mom so many times: ‘Mom, please, do not place me under guardianship, I would have no rights left’. How to explain this: I want to get hired, I want to do many things in life, and my mom really believed that I would not have any opportunity after I graduate from school (high school). Or at least that is what she thought, that she could not take me anywhere to have me hired, so at least this way I would have some income, a pension.” (Person with sensorial disabilities and epilepsy placed under guardianship) Guardianship is a permanent measure, with few exceptions. “We only had two situations in 25 years. The guardian was never removed by the person placed under guardianship. The guardian was removed by someone else, not by the person under guardianship. And that says it all.” (Municipality judge) The appointed guardian is often in a conflict of interest with the person placed under guardianship. “A major issue raised by other Guardianship Authority Services at the national level was that the legislation in the field is permissive or leaves room for interpretation so it leads to situations where the courts appoint the Guardianship Authority Service itself as the guardian for the person placed under guardianship, thus generating a conflict of interest.” (Municipality GAS representative) 71 Effective protection of rights There are no appropriate safeguards for preventing abuses. “We are generally tolerant [of guardians], [because] it is not easy to take care of an ill person. [...] We can only monitor and manage the tasks related to guardianship, and we refer to the court if we notice any serious violations.” (Municipality GAS representative) “We have only enforced measures against abuses in the sense of changing the guardian. I do not know whether any judge in Romania has ever fined a guardian. I am quite convinced there are many cases of abusive behavior towards persons under guardianship, which are not filed as complaints.” (Municipality judge) There are no common templates or practices for the yearly report. “Yearly reports must generally be submitted within 30 days after the end of the year. […] We need to make people aware that they must comply with their obligations. There were cases when the report was not submitted (we had such cases back in 2013/2014). A RON 2,000 fine was issued. We felt sorry about that, but the law must be observed.” (Municipality GAS representative) “We cannot hold a guardian responsible. We have no coercive measures against guardians who do not fulfill their duties. We sometimes exceeded the scope of our responsibilities and threatened that we would call in the police although only a court can do this.” (Municipality GAS representative) Source: World Bank qualitative research (February-May 2020). No official data exist on the number of persons under guardianship, and current estimates vary greatly. Despite the importance of monitoring the situation of persons under guardianship and the need to know their number to make the best policy decisions, there are no public official data on the number persons under guardianship. In August 2020, the Ministry of Internal Affairs (MIA) informed the NARPDCA that there were 77 thousand persons under guardianship, but as of November 9, 2019, the MIA had estimated that only 7,024 individuals had been deprived of their legal capacity.108 The data collected from GASs during the preparation of this report indicated that 10,973 persons were under guardianship in the 1,673 localities where questionnaires were filled in, which can be extrapolated to a national estimate of about 17,570 persons under guardianship. The number of persons under guardianship seems to have increased during recent years and their profile is heterogeneous. Estimates based on the data that the World Bank collected from the GASs show that the number of persons placed under guardianship has increased since 2012,109 while 4 thousand persons were placed under guardianship in 2019 alone. Among these, more than half were women, 46 percent were aged 65 or older, while there were also significant percentages of the 18–34 and 35–49 age groups (Annex-Table 12). About 95 percent of persons placed under guardianship in 2019 had a disability certificate. Of these, most had a certificate for severe disabilities (84 percent), while 14 percent had an accentuated level of disability and others had only moderate or even low degrees of disability. Among all persons with disabilities who had a certificate, most were persons with psychosocial (44 percent) and mental (37 percent) disabilities, while others had physical, somatic, visual or deafblindness.110 108 According to the data provided by the Directorate for Personal Records and Database Management within the MIA, following request no. 3520839/2019 from the Centre for Legal Resources. 109 The number of psychiatric evaluations for mental incapacity has increased greatly over the last few years. According to the 2018 annual report on the activity of the forensic medicine network drafted by the National Institute of Forensic Medicine “Mina Minovici,” evaluations for the adjudication of incapacity are the most common evaluations carried out in civil cases, with their number peaking in 2017 and 2018 (https://www.legmed.ro/doc/dds2018.pdf). 110 Data on the profile of persons placed under guardianship in 2019 can be found in Annex-Table 12. 72 Effective protection of rights Persons admitted to hospital involuntarily Persons with disabilities admitted involuntarily to psychiatric hospitals and wards are also deprived of their opportunity to make decisions. The CRPD Committee considers that the practice of involuntary admission is a form of deprivation of liberty and a violation of a significant number of rights enshrined in the CRPD.111 In Romania, involuntary admission to psychiatric hospitals and wards is a practice sanctioned by law. A person can only be involuntarily admitted to a psychiatric hospital pursuant to Law no. 487/2002 if an authorized psychiatrist decides that the person has a mental disorder and considers there to be an imminent danger of harm to themselves or others; or, should the person not be admitted, this could seriously impair her condition or prevent her from receiving adequate treatment. The involuntary admission process is detailed in Box 7. In 2018, 804 patients were involuntarily admitted to 30 hospital facilities in 27 counties, down from 988 in 2017.112 Although all involuntary admissions must be confirmed by a court order, there are cases that lack this confirmation.113 Stages of the involuntary admission process in Romania BOX 7 The involuntary admission process goes as follows: 1. The general practitioner or the specialized psychiatrist who oversees the person, the person’s family, the local authority bodies with socio-medical and public order responsibilities, firefighters, the prosecutor, or the civil court may request an involuntary admission procedure at any time during a trial if they believe that the mental health of a person requires it. 2. The psychiatrist, after evaluating the mental health state of the person in question and deciding that involuntary admission is necessary to administer psychiatric treatment must immediately inform the person in question and her legal representative or either the GAS or the GDSACP of the decision. 3. If the patient does not provide their informed consent, the psychiatrist will initiate the involuntary admission procedure. This involves the patient being examined by a review committee consisting of other doctors than those who initially admitted them to the hospital (two psychiatrists and a physician of another specialty or a civil society representative). The review committee must also ascertain whether the patient should remain in the health facility during the involuntary admission procedure and inform the hospital manager accordingly. 4. The hospital manager must notify the court about the patient’s deprivation of liberty and request the judge to confirm the admission. The patient must then be brought in front of the judge and receive legal aid. 5. The judge then issues a ruling that either confirms or dismisses the involuntary admission. The court ruling can be challenged in a second appeal by the person or by the person’s lawyer or conventional representative. Source: Law no. 487/2002 on Mental Health and the Protection of Persons with Mental Disorders, Sec. 2, Involuntary admission. 111 Art. 14 (liberty and security of person), Art. 12 (equal recognition before the law), Art. 17 (protecting the integrity of the person), Art. 15 (freedom from torture or cruel, inhuman, or degrading treatment or punishment), Art. 16 (freedom from exploitation, violence, and abuse), and Art. 25, which provides the right to health care based on the patient’s free and informed consent instead of the consent of their legal or similar representative (CRPD Committee, 2014a, paras. (40)–(41); Human Rights Council, 2019, paras. (15)–(16)). 112 Data provided by the Ministry of Health on September 4, 2019, and collected by the National Cen-ter for Mental Health: https:// www.senat.ro/PDFIntrebari/b%20r%2019%2006%20botnariu%202775%20a.pdf. The UN Special Rapporteur on the rights of persons with disabilities emphasizes that voluntary admissions may not necessarily reflect the person’s free and informed consent as this may have been obtained under the threat of involuntary commitment (Human Rights Council, 2019, para. (16)). 113 The Ombudsman identified 12 unconfirmed cases of involuntary admissions at “Dr. Gheorghe Preda” Psychiatric Hospital in Sibiu; in other words, just 4.6 percent of the number of requests for involuntary admissions (Romanian Ombudsman, 2019). 73 Effective protection of rights Barriers to concluding legal documents Although they are not de jure deprived of their legal capacity, there are persons who de facto do not have the opportunity to perform legal acts and conclude contracts because of other legal, administrative, or attitude barriers. Persons with disabilities can frequently face the following types of barriers in trying to conclude legal agreements: 1. Persons with disabilities have the right to manage their financial resources, but this is not always respected.114 For example, banks sometimes refuse to open bank accounts for blind clients because they cannot read the contract,115 refuse to issue bank cards to persons with disabilities,116 or deny them the option to conclude loan contracts when they consider that they are incapable of making decisions.117 2. Another obstacle is the attitude of public notaries towards persons with disabilities who they consider incapable of making decisions. Public notaries often preemptively request a conservator to be appointed or recommend that the person with disabilities be placed under guardianship as a precautionary measure to avert any risk of the legal documents being subsequently nullified. 3. Persons with psychosocial or intellectual disabilities face other restrictions in trying to conclude legal documents. For instance, persons declared “alienated” or “debilitated” are forbidden to marry.118 Also, in order for these persons to marry, they must present a medical certificate from the family doctor/general practitioner (GP) that confirms the person’s “neuropsychological normality.” Their disability also limits their partners’ rights to conclude legal agreements. For instance, individuals who want to adopt a child but whose “spouses are mentally ill or have a mental disability” are not allowed to do so.119 Persons who need support for making decisions Lack of support for persons with disabilities to make decisions can significantly limit their autonomy over the management of their everyday lives. Support for decision-making is essential to enable persons with disabilities to exercise all of their rights and prevent their institutionalization or placement under guardianship. A significant proportion of persons with and without disabilities need support in making important life decisions, but this proportion is higher among persons with disabilities (46 percent compared with 32 percent among those without disabilities). The difference between persons with and without disabilities seems to be higher among individuals 114 To remedy such forms of discrimination, Art. 12 para. (5) of the CRPD require State parties to take appropriate and effective measures to ensure equal rights for persons with disabilities to own or inherit properties, manage their own incomes, and have equal access to bank loans, mortgages, and other types of financial loans, and must make sure that persons with disabilities are not arbitrarily deprived of their assets. 115 Such a case was sanctioned by the National Council for Combating Discrimination (NCCD) as being discriminatory as per Art. 2 para. (1), Art. 10 let. d), and Art. 15 of the GO no. 137/2000, and the bank in question was subject to a RON 3,000 fine. The ruling also stipulated that banks must provide alternative opportunities for persons with disabilities; for example, a contract written in Braille (NCCD Decision no. 45/ 22.01.2020, https://www.cncd.ro/wp-content/uploads/2021/01/Hotarare-45-2020-1.pdf). 116 The NCCD decided such a situation violates the person’s right to have equal access to bank services on the basis of disability (NCCD decision no. 97/07.03.2018). The conservator of the person with disabilities had to go in person to the bank to withdraw cash and manage the account. By treating its customer in that manner, the bank created a hostile, degrading climate and the treatment represents harassment of the person with disabilities—the account owner, and their conservator (https://www. cncd.ro/wp-content/uploads/2020/12/hotarare-97-18_dosar-598-17_h_II_Constatare-amenda-5000-lei-recomandare.pdf). 117 The Centre for Legal Resources held a debate in July 2019 in Craiova regarding the support for persons with mental/ intellectual disabilities in decision-making, which was attended by representatives of the GASs, the GDSACP in Dolj county, nongovernmental organizations, and parents of young adults with intellectual disabilities. One of the attendees showed that when he requested a bank loan to purchase a car for a person with disabilities, the bank required them to provide a notarized document proving that he had the capacity to sign the loan approval document. The person with disabilities and their parent asked for help from several public notaries, but were refused (CLR, 2019). 118 Law no. 287/2009 on the Civil Code, Art. 276. 119 Law no. 273/2004 on the Adoption Procedure, Art. 7 para. (3). 74 Effective protection of rights younger than 50 or older than 65 who have lower education levels. Irrespective of their disability, 21 percent of the persons requiring decision-making support declared in the World Bank survey that they did not have access to support from a person or service every time they needed it, while around 14 percent of the respondents stated that they had never had such access. Percentage of persons with disabilities who need support to make decisions FIGURE 10 by the type of decision Decisions regarding… The organization of the everyday life To manage assets/properties 46 % 40% 59% 38% 68% 44% With respect to staff of medical services With respect to a local public authority 11% 8% 20% 7% 37% 17% To open a bank account or request a loan With respect to the staff of psychiatric hospitals 7 % 0% 6% 2% 8% 6% In the voting process Regarding child rearing 4% 10% 2% 6% 6% 5% In the job seeking process Regarding the person’s education/with respect to an education institution/a trainer 9% 9% 6% 4% 3% 1% During the procedure of adopting a child Other decisions 1% 8% 0% 7% 0% 5% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). 75 Effective protection of rights Explanation of the problem The NSPD 2016-2020 measures did little to promote and ensure the exercise of legal capacity by persons with disabilities. The NSPD 2016-2020 emphasized the importance of legal capacity as it affects “all the fields of life,”120 while also highlighting the situation of persons with disabilities whose decisions are taken for them by their guardians. However, the design and implementation of the measures proposed in the strategy faced some key issues. First, none of the measures explicitly mentioned the need to repeal: (i) the existing provisions in the Civil Code on guardianship; (ii) those in other laws that deny persons with disabilities the right to conclude legal contracts on the grounds of their disability; (iii) the civil law on involuntary admission; or (iv) mandatory medical admission in criminal cases. Second, a vaguely articulated measure such as “Elaborating and disseminating a working procedure on the representation of persons with disabilities” may promote a substitute instead of a supported decision-making system. Finally, measures to provide decision-making support or develop services to enable persons with disabilities to exercise their legal capacity have not been implemented at all or have only just been initiated. Four key elements are needed for persons with disabilities to be able to make decisions: (i) amending or abrogating the legislation that allows denying or restricting legal capacity on the basis of disability; (ii) ensuring access for persons with disabilities to a diversity of services and support arrangements they might need in order to exercise their legal capacity; (iii) training representatives of public institutions, magistrates, and other relevant stakeholders to recognize the legal capacity of persons with disabilities on an equal basis with others; and (iv) eliminating barriers and cultural norms that deprive persons with disabilities of their legal capacity and of the possibility of making their own decisions. Amending or abrogating legislation denying or restricting legal capacity on the basis of disability In Romania, the exercise of legal capacity by persons with disabilities is restricted by existing laws that need to be reviewed or abrogated. The recognition of the legal capacity of persons with disabilities in all aspects of life “requires the abolition of substitute decision-making regimes and mechanisms that deny legal capacity and that discriminate in purpose or effect against persons with disabilities.”121 The domestic legislation on legal capacity that needs to be harmonized with Art. 12 of the CRPD include: (i) the Civil Code and the Civil Procedure Code (including the regulations on individuals and family relationships); (ii) the mental health law;122 (iii) the labor code;123 (iv) the law on the rights of persons with disabilities;124 and (v) other laws restricting the exercise of their civil rights.125 Specifically, harmonizing Romanian law with the provisions of the CRPD will mean repealing the legal provisions and practices that: 120 NSPD 2016–2020, VII.2. Participation — analysis of the current situation. 121 CRPD Committee (2014a, Art. 12 para. (50) let. a)). 122 Human Rights Council (2017b, para. (36)). In Romania, the legislation regarding mental health is Law no. 487/2002 and the Order no. 488/2016 of the Ministry of Health. 123 According to Art. 13 para. (4) of the Labor Code, it is forbidden to employ persons under guardianship. 124 Law no. 448/2006 on the protection and promotion of the rights of persons with disabilities. 125 An example of such comprehensive reform is the one in Peru. On September 4, 2018, the Peruvian government published Decree no. 1384, acknowledging and regulating the legal capacity of the persons with disabilities. This Decree reforms the Civil Code, the Civil Procedure Code, and the Notarial Act, while recognizing the full legal capacity for all persons with disabilities, repeals guardianship for persons with disabilities, removes restrictions on exercising legal capacity (for example, the right to marry and to draft a will), and introduces various supported decision-making regimes. 76 Effective protection of rights 1. Deprive of legal agency126 the person placed under legal guardianship, which is further defined as a person who “does not have the necessary judgement for taking care of their own interests because of alienation or mental retardation”127 understood as a “mental disorder or a mental handicap128 causing the mental incapacity of that person to act critically and predictively with respect to the social and legal consequences deriving from the exercise of their civil rights and obligations.”129 2. Use terminology that is not in line with the CRPD principles and concepts regarding psychosocial and intellectual disabilities. 3. Prohibit the adoption of children by persons deprived of legal agency or who are considered to have “mental disorders and mental disabilities.”130 4. Prohibit persons whose “spouses have a mental disorder or a mental disability” to adopt a child.131 5. Prohibit marriages involving persons who are “unsound of mind and mentally debilitated.”132 6. Prohibit employment to persons under guardianship. Legislation contravening the CRPD principles must be abrogated and amended by the Ministry of Justice in partnership with the NARPDCA. As the main way to implement the Convention’s recommendation involves amendments to the law, the institution in charge is the Ministry of Justice133 in its capacity as the initiator and coordinator of the task force for amending the Codes. The NARPDCA, as coordination mechanism for the implementation of the CRPD,134 must provide methodological support and coordinate the necessary actions by relevant stakeholders. Amending and completing the law requires an extensive analysis process that must include and actively involve disabled persons’ organizations (DPOs).135 Persons currently deprived of their legal capacity must have the opportunity to exercise it. There is a need to adopt procedures to facilitate and speed up the process of restoring full legal capacity to persons who are currently under guardianship. County or local institutions such as the Guardianship Court or GAS should be responsible for identifying and informing persons under guardianship about this process. The process of restoring full legal capacity must be carried out simultaneously with the adoption of complementary measures regulating the evaluation of the person’s need for decision- making support and the provision of such services. 126 Law no. 287/2009 on the Civil Code, Art. 43 para. (1) let. b). 127 Law no. 287/2009 on the Civil Code, Art. 164 para. (1). 128 “Handicap” is the terminology used by the law and will only be used in this report when referencing legal provisions that use the term. 129 Law no. 71/2011 on the Civil Code, Art. 211. 130 Law no. 287/2009 on the Civil Code, Art. 459. 131 Law no. 273/2004 on the Adoption Procedure, Art. 7 para. (3). 132 Law no. 287/2009 on the Civil Code, Art. 276. 133 Pursuant to GD no. 652/2009 on organizing and operating the Ministry of Justice, Art. 5 let. c), Art. 6 II) pc. 1-3. 134 GD no. 1002/2019 regarding the organization and operation of the National Authority for the Rights of Persons with Disabilities, Children and Adoptions, Art. 3 para. (2). 135 DPOs are representative organizations in which persons with disabilities constitute a majority on the board and among staff or members, and civil society organizations. 77 Effective protection of rights Ensuring the access of persons with disabilities to the services and support arrangements that they need to exercise their legal capacity In order to ensure that persons with disabilities can exercise their legal capacity, State parties must provide supported decision-making arrangements. Reforming the existing legislation is necessary but not sufficient to ensure that persons with disabilities can exercise their legal capacity. According to the provisions of the CRPD, States must also develop136 supported decision-making arrangements137 of various types and intensities, and both formal and informal.138 These arrangements might include, for example, “support networks, support agreements, peer and self-support groups, support for self-advocacy, independent advocacy, and advance directives.”139 Support services must be available, accessible, adequate, and affordable for all persons with disabilities, including those in residential institutions, and such arrangements must be developed with the active involvement of and in consultation with persons with disabilities and their representative organizations. Supported decision-making services and arrangements need to be flexibly regulated to provide the tailored support that persons with disabilities need according to their own will and preferences and to protect them from any abuse. Currently, there is no international consensus on the benefits of formalizing the relationship between the person providing support in making a decision and the person with disabilities, to the detriment of the informal support provided, for example, by trusted persons. Formalization makes it possible to regulate the provision of support, the different types of support and the safeguards against abuse. However, if formalization is too rigid, it can compromise the relationship of trust and the informal nature of the support, and it can lead to excessive overregulation.140 Box 8 below provides two examples of informal services. However, the CRPD Committee calls on State parties to ensure that legal recognition of informal support for persons with disabilities is available and accessible, and this includes a mechanism for third-parties to verify the identity of the support person and challenge the latter’s actions that are contrary to the will and preferences of the person with disabilities.141 136 At the same time, the right to legal capacity does not depend on the acceptance of any form of support, as persons with disabilities can refuse it (Human Rights Council 2017b, para. (27)). 137 The specialized literature on the meaning of Art. 12 distinguishes between “support to exercise legal capacity”—a wide range of support arrangements and adaptations—and “supported decision-making,” which is only one type of support to exercise legal capacity (Bantekas et al., 2018: 364). This distinction can also be found in the General Comment No. 1, which emphasizes that support may include, in addition to direct support, measures relating to universal design and accessibility; for example, with regard to the information provided by private and public actors, such as banks, in order to enable persons with disabilities to perform legal acts required to open a bank account, conclude contracts, or conduct other social transactions (CRPD Committee, 2014a, para. (17)). The General Comment also mentions, among such measures, the possibility of preparing an advance directive by the person with disabilities to outline her will and preferences to be prioritized at a later date when she would no longer be able to communicate her preferences (CRPD Committee, 2014a, para. (17)) a measure that can prevent involuntary hospitalization and institutionalization. 138 CRPD Committee (2014a, para. (17)). 139 Human Rights Council (2017b, para. (27)). 140 Human Rights Council (2017b, para. (58)). 141 CRPD Committee (2014a, para. (29) let. d)). 78 Effective protection of rights BOX 8 Supported decision-making – models of good practice The Personal Ombudsman is a Swedish supported decision-making service that has operating nationwide since 2000 initially developed as a pilot project by persons with a history of psychiatric diagnosis. Service staff work under a contract with the persons with psychosocial disabilities or mental health problems who are most vulnerable and socially isolated, helping them with the decisions that they need to take in all aspects of life. The support relationship begins as a relationship of trust, and the contract can be suspended at any time at the request of the person with disabilities. The service has been permanently funded by the State budget since 2013 and has been proven to reduce long-term costs for care and psychosocial services. As of 2014, there were 310 Personal Ombudsman who were supporting six thousand people. “Ceva de Spus” is a Romanian non-governmental organization that promotes supported self- advocacy as an alternative to substitute decision-making. Its membership is made up of self- advocates who are persons with intellectual and physical disabilities and support persons. The organization supports persons with disabilities to make their difficulties and wishes known using their own voice, and not through intermediaries. The organization is funded by international organizations and from its own sources (Interview with a manager/support person). Sources: Zero Project: https://zeroproject.org/policy/sweden-2/ and the World Bank qualitative research (February-May 2020). Ensuring the development of a range of support services and arrangements to enable persons with disabilities to exercise their legal capacity requires the development of a primary regulatory framework. Following the decision of the Constitutional Court of Romania declaring the unconstitutionality of Art. 164 para. (1) of the Civil Code,142 the Ministry of Justice has to develop new legal norms that acknowledge the equal right to legal capacity, including for persons with disabilities with high support needs, and ensure access to a range of measures to enable them to exercise their legal capacity. These measures might consist of: (i) ensuring the provision of decision-making support by one or more persons; (ii) enabling other people to make decisions on behalf of the person with disabilities by means of an advance directive or proxies/power of attorney; or (iii) using a facilitator to support the decision-making process.143 Developing this primary legal framework will require an extensive analysis of international legislation on the recognition of legal capacity, complemented by proposals elaborated by working groups involving persons with disabilities, representatives of the Ministry of Justice, NARPDCA, the GDSACPs, and NGOs. In Romania, there is no secondary regulatory legislation governing specific supported decision-making services. Currently, support for decision-making can only be provided within two types of services that can be licensed for provision to adults with disabilities.144 The first type refers to residential social services such as: (i) habilitation and rehabilitation centers for adults with disabilities; (ii) centers for independent living for adults with disabilities; and (iii) care and assistance centers for adults with disabilities.145 The second type consists of assistance and support services for adults with disabilities living in the community.146 The interviews conducted as part 142 https://www.ccr.ro/wp-content/uploads/2021/01/Decizie_601_2020.pdf 143 Facilitated decision-making applies to a very small number of situations when “supports have been exhausted (including creative communication techniques, building relationships, accessible information etc.) and they have not led to a decision; and the will and preferences of the individual cannot be ascertained clearly and unambiguously, or there appears to be substantial conflict between preferences expressed in the respective moment and the best understanding/interpretation of the person’s long-term preferences; and the individual has not previously expressed his or her will or preferences (for example, in planning documents such as directives or power of attorney) ”(MDAC, 2013: 28). 144 Regulated by Order no. 82/2019 of the Ministry of Labor and Social Justice (currently Ministry of Labor and Social Protection) approving specific minimum mandatory quality standards for social services for adults with disabilities. 145 Order of the Ministry of Labor and Social Justice no. 82/2019, Annex 1. 146 Order of the Ministry of Labor and Social Justice no. 82/2019, Annex 7. According to the latest NARPDCA statistics for the first quarter of 2020, there is no such certified service at the national level. 79 Effective protection of rights of the qualitative research showed that GDSACP representatives were not aware that such activities existed in residential centers, nor of the possibility of developing services at the community level with a supported decision-making component. Persons with disabilities from residential centers may benefit from decision- making support provided by center employees. Order no. 82/2019 specifies support for decision-making as one of the many activities offered to residents of centers for adults with disabilities and is a quality standard that any residential service must meet.147 Although minimum quality standards provide for the possibility of collaborating with specialists from NGOs to support center employees in providing this type of support to residents,148 only about 4 percent of residential centers reported such collaborations in 2020.149 Furthermore, the qualitative research emphasized that providing decision-making assistance and support activities requires the involvement of the entire multidisciplinary team in residential centers, and this process seems to be overregulated when it should be accessible to and under the control of persons with disabilities themselves.150 Developing supported decision-making services will require aligning current quality standards with the provisions of the Convention. Order no. 82/2019 that regulated minimum quality standards for services to support disabled adults is inconsistent with provisions of the Convention. First, persons with disabilities in institutions do not have the opportunity to choose, in an independent manner and in the absence of any conflict of interest, the type, form, or intensity of the support that they want to make decisions. Currently, in practice this type of support is limited to the services provided by the residential center staff. Second, the Order does not set out the steps necessary for the provision of decision-making support for persons living in group homes or beneficiaries of day centers.151 Moreover, the Order does not detail how supported decision-making activities comply with the safeguards required by Art. 12 para. (4) of the CRPD.152 Furthermore, these activities are only one element of a wide range of support services and arrangements that must be available at the national level and must be provided according to the needs and preferences of institutionalized persons until their transition into community life. In order to have a wide range of support services and arrangements, several steps need to be taken. At present, there is an insufficient understanding in society and public institutions of the right of persons with disabilities to receive support to exercise their legal capacity, which is reflected in the lack of public information on this subject. Currently, the number of initiatives aimed at ensuring the provision of this type of support is very low, and there are no regulations requiring the need for such services to be measured. In this context, a diverse system of supported decision- making could be implemented at by taking the following steps (an example of such a process in Bulgaria can be found in Box 9). 147 Order of the Ministry of Labor and Social Justice no. 82/2019, Annex 1. 148 Order of the Ministry of Labor and Social Justice no. 82/2019, Standard 14, Minimum requirement 8. 149 World Bank survey of public residential centers for adults with disabilities (2020). 150 These points were highlighted during the interviews conducted, as part of the qualitative research, with case managers from Timiș and Sibiu counties. Choice and control over support services by persons with disabilities is one of the principles of the Convention (Human Rights Council 2017c, paras. (55)-(56)). 151 Order of the Ministry of Labor and Social Justice no. 82/2019, Annex 2 on Specific Minimum Mandatory Quality Standards for Residential Social Services Such as Sheltered Housing for Adults with Disabilities, and Annex 6 on Specific Minimum Quality Standards for Social Services Organized as Day Centers for Adults with Disabilities and Ambulatory Neuromotor Recovery Service Centers for Adults with Disabilities, do not currently foresee the concrete way in which supported decision-making activities should be provided for the beneficiaries of these services. 152 According to Art. 12 para. (4) of the CRPD, any measure regarding the exercise of legal capacity, including supported decision- making services, must meet certain conditions to ensure that the support provided (i) respects the will and preferences of the supported person; (ii) is free of conflict of interest and undue influence; (iii) is proportional and tailored to the person’s situation; and (iv) is applied for the shortest time and subject to review by a competent, independent, and impartial authority or judicial body. 80 Effective protection of rights 1. Empowering governmental and non-governmental actors by providing them with information about ensuring the exercise of legal capacity by persons with disabilities, also by developing supported decision-making services. 2. Preparing a practical guide to providing supported decision-making services in accordance with the provisions of the CRPD. This guide should be developed with the active participation of relevant governmental and non-governmental actors, including persons with disabilities and their representative organizations, and should be based on a comprehensive analysis of good and promising practices at the national and international levels (Box 10). It may also be helpful to involve national and international experts with experience in developing supported decision-making systems in other countries.153 3. Designating a national committee comprising relevant representatives of the civil society and the government to coordinate the design and piloting of initiatives at the local level and creating local working groups that include a variety of partners (GASs, GDSACPs, NGOs, mental health services, persons with disabilities, DPOs, and other community allies). The process of designing, implementing, and assessing pilot projects requires: (i) advocacy; (ii) strengthening institutional partnerships; (iii) increasing the capacity of those involved to implement the mandates of Art. 12; (iv) increasing knowledge of what works by exchanging experiences at the international level; and (v) assessing the impact of supported decision-making services on persons with disabilities and the dissemination of the assessment results at the community level in order to raise awareness of the importance of these services. 4. Developing quality standards for supported decision-making services and establishing mechanisms for funding, aimed at regulating the assessment of the need for supported decision-making services in accordance with the social model of disability based on human rights. 5. Providing accessible training and information to persons with disabilities, representatives of public institutions, and support persons concerning the right for persons with disabilities to exercise their legal capacity and the provision of decision-making support. This will require designating institutions responsible for conducting the training, establishing the training methodology, and preparing the training materials. 6. Providing safeguards against abuse by: a) Setting a deadline for choosing the preferred support measure by the person with disabilities and establishing a review period in accordance with each individual’s need for support. The process of reviewing the measure should be flexible enough to allow for such request from the person with disabilities at any time, based on a person’s own choice and preferences.154 b) Appointing facilitators to ensure that designated people can provide tailored support appropriate to the needs and preferences of persons with disabilities, 153 An example of such a guide is the one prepared by the Israel Human Rights Center for People with Disabilities, which includes: (i) the vision; (ii) the guiding values and principles; (iii) the type of persons who need support by the type and degree of their disability, their age, legal capacity, will, and motivation; (iv) the training, personal characteristics, and ethics of the support person; (v) areas, stages, and levels of the support scheme; (vi) the duration of support (in accordance with the person’s will and needs); (vii) risk assessment and harm prevention; (viii) the termination of support; (ix) other partners in the support process; and (x) the provision of continuous training to the support person throughout the process (Israel Human Rights Center for People with Disabilities, 2016). 154 Proposal based on the models in Bulgaria and Canada presented during the “Sufficiency of Law, Deficiency of Rights” workshop (BCNL, 2015). 81 Effective protection of rights as well as third-party monitors to ensure independent investigation and monitoring to report possible abuses, including those related to conflicts of interest, undue influence, or inadequate duration of support. 7. Conducting national and local campaigns to raise awareness about the recognition of legal capacity of persons with disabilities and the importance of providing support in the decision-making process. Advocacy of Art. 12 of the CRPD - The Next Steps Program in Bulgaria (2014- BOX 9 2016) The Next Steps Program in Bulgaria aimed to address challenges related to: (i) appreciation and understanding of Art. 12 standards among prosecutors, notaries, mayors, medical experts, judges, academics, and policy makers; (ii) the existing unfavorable legal framework to provide persons with disabilities with opportunities to exercise and enjoy their human rights according to their will and preferences and to develop practices and jurisprudence in line with the requirements of Art. 12 of the CRPD; (iii) the need to constantly upgrade the capacity of the pilot project teams to pilot the use of supported decision-making; and (v) share successful lessons learned with national and international stakeholders. The main strategies used in the program to achieve these goals were: Advocacy and partnership by: (i) providing the government with technical support to develop a legal framework, a mechanism to monitor the implementation of the CRPD, and help with writing and disseminating official expert statements, legal articles, and legal proposals and with organizing events; (ii) involving new target groups among policy makers; (iii) ensuring expert support for the introduction of the values and standards of Art. 12 into the country’s jurisprudence within the existing laws; (iv) researching specific impacts of the legal reform on guardianship; (v) collecting evidence-based information from the pilot projects to develop advocacy materials; and (vi) ensuring that the advocacy initiatives and the pilot project outcomes are aligned in legal proposals that take into account the Bulgarian context and specific needs of each target group. Capacity building by: (i) training the pilot project teams in the concept of supported decision- making through instruction and ongoing legal support; (ii) increasing knowledge of the CRPD specifically Art. 12 among judges, academics, and students through legal workshops, open discussions, and debates; and (iii) increasing knowledge of the CRPD and Art. 12 among legal and other professionals. Knowledge upgrade and exchange: (i) to create a coherent training methodology, modules, and tools for promoting the Bulgarian pilot of supported decision-making nationally and internationally: (ii) to create space for open discussion of the challenges faced when piloting supported decision-making by providing intensive training to international and national interested parties; and (iii) to share the know-how and experience of Bulgaria as a model for pilot projects and legal frameworks on supported decision-making by participating in various international events on the topic. Gathering evidence-based data and disseminating information: (i) to collect and summarize data on the development of the pilot projects and their impact in terms of increasing the person’s quality of life; (ii) to change the attitude of the local communities and the wider public towards persons with intellectual disabilities and mental health problems through various public awareness activities; (iii) to communicate the issues related to guardianship and the new concept of legal capacity through media involvement and outreach; and (iv) to build civil society support on the need to change the existing legal framework. Source: BCNL (2014). Persons with psychosocial and intellectual disabilities need measures related to the exercise of legal capacity to prevent being hospitalized and given psychiatric treatment without their informed consent. Currently, there are few support measures that persons with disabilities can use to advocate for themselves in these circumstances. One possibility is for them to appoint a “conventional representative” to represent 82 Effective protection of rights their interests during their medical treatment, but this kind of representative can still make decisions about the represented person’s medical treatment without consulting them (Box 10). In addition, the exercise of legal capacity could be facilitated by a series of measures to prevent restraint, seclusion and other medical treatments without consent and may include: (i) applying crisis de-escalation techniques; (ii) preventing crisis situations by conducting preliminary and ongoing analyses of potential triggers; and (iii) promoting the use of an advance directive, a document in which the person with disabilities describes how she or he would like to be treated in the event of not being able to make decisions.155 The conventional representative as a supported decision-making measure BOX 10 According to Art. 45 of Law no. 487/2002 on mental health and persons with mental disorders, the conventional representative is appointed by the person to be subjected to a psychiatric treatment in order to assist or represent her/him during the medical treatment. Representation is the effect of an agreement signed by both parties that may be terminated at any time unilaterally by either party. The conventional representative has the right and obligation to assist the person in their relationship with the medical unit, public institutions, and any other relevant persons in matters related to their hospitalization and medical treatment, and to represent their interests and rights to the management of the psychiatric hospital and the judicial bodies. According to the law, the conventional representative is, at the same time, authorized to decide on the administration of electroconvulsive therapy. To comply with the provisions of the Convention, it will be necessary to regulate that assistance and representation must be provided according to the will and preferences of the person being represented in accordance with the safeguards set out in Art. 12 para. (4) of the CRPD and to remove any provision justifying the limitation of the right to consent to electroconvulsive therapy in accordance with the CRPD Committee (2014a, para. (29) let. f)). The practice of appointing the conventional representative is not widespread. Although the appointment of a conventional representative could provide persons with intellectual and psychosocial disabilities the opportunity to have their interests and rights represented according to their own wishes, only a few persons turn to a conventional representative. The data collected from psychiatric wards and hospitals during the preparation for this report indicated a percentage of approximately 9% persons with a conventional representative of the total of 6,507 hospitalized persons on June 1, 2020, at the level of 67 psychiatric units where questionnaires were filled in. Providing training to representatives of public institutions, magistrates, and other relevant actors, including persons with disabilities, on the recognition of equal legal capacity of persons with disabilities Training on the recognition of legal capacity for persons with disabilities is essential to facilitate its exercise and prevent the violation of rights. The recognition of legal capacity is a paradigm shift that requires radical changes in the perception and understanding of how persons with disabilities make decisions. Often, persons with disabilities, especially those with intellectual and psychosocial disabilities, are perceived as incapable of making decisions by magistrates, police officers, public notaries, social workers, psychologists, family members, neighbors, and even other persons with disabilities. Therefore, the CRPD Committee has recommended providing training to all relevant actors on recognizing the legal capacity of persons with disabilities.156 155 CRPD Committee (2014a, para. (17)). 156 CRPD Committee (2014a, para. (24)); Human Rights Council (2017b, para. (84) let. f)). State parties’ obligation to promote the training of professionals and employees working directly with persons with disabilities regarding the rights recognized by the Convention so as to provide rights-based assistance and services is also stipulated in the CRPD, Art. 4 para. (1) let. i). 83 Effective protection of rights Little training is currently provided to professionals who work and interact with persons with disabilities on the rights of those persons. In 2019, a small proportion of professionals and staff working directly with persons with disabilities or monitoring their rights had received any training on the rights of persons with disabilities – only 3 percent of GDSACP staff and 6 percent of GAS staff or those with responsibilities related to guardianship. No staff in the country’s penitentiaries had received specific training as of the end of 2019. In contrast, 88 percent of the employees of the Romanian Ombudsman with responsibilities related to the protection and promotion of the rights of persons with disabilities had participated in training on monitoring, the right of access to justice and equal recognition before the law for persons with disabilities. This type of training is particularly important for professionals interacting or working with persons with psychosocial and intellectual disabilities. Training is necessary for psychiatrists and psychiatric nurses, psychologists, and social workers from psychiatric hospitals, police, and gendarmes, as well as persons with psychosocial and intellectual disabilities themselves to prevent the use of coercive methods in psychiatric institutions.157 Training on alternatives to involuntary treatment is still absent in many institutions. In 2019, during 17 monitoring visits to closed institutions, the National Mechanism for the Prevention of Torture (NMP) recommended staff training on de-escalation techniques while during 8 such visits NMP identified the need for a clear procedure to evaluate the potential triggers of a crisis.158 This low level of professional training in recognizing and ensuring the exercise of legal capacity has multiple causes. Currently, in Romania there are no undergraduate and postgraduate courses or certified training modules in the field of legal capacity and equal recognition before the law for persons with disabilities. For example, the National Institute of Magistracy (NIM) does not offer any initial training courses or modules dedicated exclusively to the rights of persons with disabilities to staff in the justice system, but only on human rights and non-discrimination in general.159 Other difficulties in providing relevant training are that institutions do not budget enough for training and the lack of harmonized and unified data collection on training needs at the court level within the justice system. Professionals who interact with persons with disabilities should receive both coordinated and specific training depending on the type of interaction they have with persons with disabilities. Training of magistrates should be conducted in multidisciplinary teams that include social workers, psychologists, lawyers, and psychiatrists, and the training should cover information on the CRPD, the concept of legal capacity, and supported decision-making measures. At the same time, training should take into account the type of interaction and specific services provided to persons with disabilities by each profession and by type of institution. Training should be aimed at raising awareness among professionals of the right to legal capacity as well as at enhancing their skills related to the interaction with persons with disabilities and provide necessary information for facilitating the equal access of persons with disabilities to all public services. 157 Mental Health Europe (2017: 6). 158 In 2019, the NMP monitoring teams made 79 visits to detention places (some visits aimed mainly at monitoring the implementation of recommendations made in the follow-up reports to previous visits to the respective detention places), 5 of which were to placement centers for children with disabilities, 14 were to residential centers for disabled adults, and 9 were to psychiatric hospitals (Romanian Ombudsman, 2019: 33-34). 159 The NIM has had a one-off cooperation with a human rights organization to provide a training course on access to justice and the rights of persons with disabilities. In June 2016, the NIM organized, in cooperation with the Centre for Legal Resources, the seminar entitled “Working with vulnerable categories of people or with people in vulnerable situations—children, the elderly, persons with disabilities, institutionalized persons or other categories of persons.” Information obtained from the interview conducted with NIM representatives and from the NIM Ongoing Training Program (NIM, 2016). 84 Effective protection of rights Persons with disabilities need to receive training and information to identify the barriers and the support they need to exercise their legal capacity. To access a service, a person must know their right to benefit from such a service, that the service exists, how to access it and how service provision is organized. The CRPD Committee emphasizes the obligation of State parties to provide training to persons with disabilities so that they can decide on the intensity and type of support that they need or whether they still need it,160 as well as allowing them to identify any conflicts of interest or possible abuses on the part of the person providing support. A key objective in providing this kind of support to persons with disabilities is to develop their self- confidence and enhance their skills, which may reduce their need for support in the future, as appropriate. Addressing cultural barriers and norms that deprive persons with disabilities of their legal capacity and prevent them from making decisions The misconception that persons with disabilities cannot make decisions is still widespread in society and is an obstacle to enabling them to exercise their legal capacity. It is common for all persons with or without disabilities to need support in making decisions. In general, the confusion between “legal capacity” and “mental capacity” remains the main reason for the perception that persons with disabilities cannot decide for themselves. The belief shared by many persons without disabilities is that persons with disabilities cannot make decisions because they lack the capacity to understand, reason, and make choices. This perception justifies the use of substitute decision-making by their guardians, family, or professionals in most areas of life and particularly when it comes to decisions related to family life, reproductive health and sexuality, or medical treatment. In some cases, the perception is that the person’s level of disability may justify substitute decision-making, a practice that is contrary to the recommendation of the Convention to provide support to all persons with disabilities who need it regardless of the degree or level of their disability (Box 11). Perceptions about the incapacity of persons with disabilities to make decisions BOX 11 “Birth control pills are administered by the nurse under a protocol. They cannot receive consent from persons with disabilities for this because they cannot make a decision due to their diagnosis, they do not have legal capacity.” (Social worker, Recovery and Rehabilitation Center) “In the case of persons with autism, the parents have to make the decision. In her case, it is also me, because she is little, and for the most serious cases, it is still up to the parents to decide, depending on the degree of disability.” (Parent of child with autism) “We explain this [medical information] to them, in a way they can understand, not in a complicated manner, but what good would a piece of complicated information do to them?” (Social worker, Care and Assistance Center) “If they have a family, it is advisable that the family makes the decision, [as] they are not capable. I see them out on the street, they call all women working in the group home mommy. They cannot vote, they cannot decide. I can see these women who accompany them. [When they] have to cross the street at the pedestrian crossing, it happens that some cross it lopsided. A person with a sick brain cannot make a decision.” (Neighbor of sheltered house) “Beneficiaries do not have the ability to understand what sexuality means, the only discussions being about menstruation. [...] The problem is not about access [to services], but about the capacity to understand such information. Normally, the GDSACP would offer such courses [on reproductive health and sexuality], but this is not very common. The family doctor comes in for family planning, but so far they have not had any situations related to reproductive health and sexuality, because their capacity for understanding is limited.” (Social worker, Recovery and Rehabilitation Center) Source: World Bank qualitative research (February-May 2020). 160 CRPD Committee (2014a, para. (24)). 85 Effective protection of rights Recommended measures The following measures are recommended: 1 The Ministry of Justice, with the methodological support of the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA), to amend provisions of the Civil Code and the Civil Procedural Code allowing the restriction of legal capacity on the basis of disability, with the direct involvement of persons with disabilities, their representative organizations, and human rights organizations. 2 The Ministry of Justice, with the methodological support of the NARPDCA, to prepare a regulatory Act on Legal Capacity and Supported Decision-Making leading to the implementation of the provisions of the Civil Code after the publication of the CCR decision in the Official Journal (the decision of July 16, 2020, declaring the unconstitutionality of Art. 164 para. (1) of the Civil Code), including the provisions of safeguards to prevent abuse, with the direct involvement of persons with disabilities, their representative organizations, and human rights organizations. 3 The Ministry of Justice and the NARPDCA to amend or repeal legislation in any field that restricts legal capacity on the basis of disability, with the direct involvement of persons with disabilities, their representative organizations, and human rights organizations. 4 The Ministry of Justice to approve procedures to facilitate and expedite the termination of guardianship of persons currently under guardianship. 5 The NARPDCA to prepare a national guide on the significance of legal capacity and measures of support related to its exercise tailored to the situation of disability in order to support the organization and operation of the newly supported decision-making services that must also provide safeguards to prevent abuse, in accordance with Art. 12 of the CRPD. 6 Setting up national committee and local working groups (coordinated by the Ministry of Justice and the NARPDCA) to organize the piloting of supported decision-making services with the direct involvement of persons with disabilities, organizations of persons with disabilities, and other nongovernmental organizations. 7 NARPDCA, the National Qualifications Authority (NQA), the Ministry of Justice, and the Ministry of Finance to elaborate a regulatory package on decision-making support services that includes: (i) assessment modalities; (ii) cost standard/ financing arrangements; (iii) the necessary training; (iv) quality standards; (v) public monitoring and reporting; and (vi) necessary evaluation and review of support services. 8 The NARPDCA, in partnership with the Ministry of Justice and the Ministry of Health, to develop and implement training programs (curriculum and training materials) for representatives of public institutions, magistrates, lawyers, and other relevant actors on recognition of the legal capacity of persons with disabilities on an equal basis in all areas of life. 9 The Ministry of Health and the NARPDCA to elaborate and ensure the implementation of norms on supported decision-making to prevent involuntary hospitalization and treatment without informed consent. 86 Effective protection of rights 10 The NARPDCA, together with the Ministry of Health, the Ministry of Justice, the Ministry of Internal Affairs (MIA), and the Guardianship Authority Services (GASs) to develop a system for collecting statistical data on persons under guardianship and on those subjected to involuntary hospitalization, and for public reporting. 87 Effective protection of rights 2.2 2.2 The accessto limitedaccess Limited the justice system tojustice IN SHORT What rights do persons with disabilities have? Persons with disabilities must have an effective access to justice. This means that they can file a complaint, address the court, and benefit from adequate redress when their rights are violated. What is the situation in Romania? Only 45 percent of the persons with disabilities know their rights or know how to address the courts of law. 55% 45% 396 33% complaints from residential and reports services In 2019, there were 396 ex officio complaints and reports to General Directorates of Social Assistance and Child Protection about cases of violence, exploitation, and abuse against persons with disabilities, of which 33 percent came from residential services. of persons with 53% disabilities felt discriminated against or harassed Also, 53 percent of persons with disabilities felt discriminated against or harassed to a large extent when they tried to access the justice system. 88 Effective protection of rights What are the causes of this problem? The institutions of the justice system are often inaccessible both physically and in terms of communications. Institutions not physically Institutions without sign accessible: language interpreters: Courts of law: 80%. Courts of law: 56%. Police precincts: 85%. Police precincts: 88%. Institutions of the justice system work are not adapted to the needs of persons with disabilities. These adaptations should include sign language interpreters, the presentation of legal information in accessible formats, flexible practices in court (for example, allowing more time for answers or for formulating questions), and the opportunity to testify by audio-video means. Persons with disabilities are not always deemed credible as witnesses or victims. sign language interpreters Persons with disabilities do not always receive free legal information in legal aid (support and representation in a court case) accessible formats when they need it. flexible practices in court Employees of the justice system are not trained to ensure that persons with disabilities have access to free legal aid justice. employees trained to No data are currently collected about how many work with persons persons with disabilities access the justice system. with disabilities These data might reveal the barriers faced by persons with disabilities and the solutions that will enable them to access the justice system. What are the key changes that need to be made? The institutions of the justice system (such as police precincts, prosecutor’s offices, and courts) must be made accessible. It is necessary to change the way in which the institutions of the justice system work to include appropriate procedures that meet the needs of persons with disabilities. The state should provide free support in legal matters to all persons with disabilities who need it. It is necessary to provide training to lawyers, prosecutors, judges, police officers, and those administrating penitentiaries in the field of the rights of persons with disabilities. It is necessary to systematically collect data about the access of persons with disabilities to the justice system. 89 Effective protection of rights 2.2 Limited access to justice Free access to justice means that all persons can resort to the justice system to defend their rights, freedoms, and legitimate interests and that they have the right to a fair trial and resolution of their case within a reasonable time. According to international human rights law, states must guarantee citizens the right to free access to all the stages of legal proceedings.161 In Romania, free access to justice is a constitutional right.162 Access to justice in a broad sense involves granting all persons access, by any means, to the proceedings, information, and venues used for the administration of justice,163 including to the high-quality legal services and effective dispute resolution mechanisms necessary to protect their rights and interests in a way that ensures fair individual and social outcomes.164 The judicial, non-judicial, and administrative services and institutions that can be accessed before, during, and after legal proceedings are police stations, public prosecutor’s offices, law firms and notary offices, courts, the Ombudsman, the Council for Monitoring the Implementation of the Convention (Monitoring Council), the National Council for Combating Discrimination, GDSACPs, and the GASs.165 Ensuring that persons with disabilities have effective access to justice requires physical accessibility, accessible information and communications, the adaptation of all legal proceedings to their needs,166, 167 and unfettered access to legal assistance and representation. Description of the problem For persons with disabilities, getting effective access to justice is often hampered by a number of barriers. The justice system is often difficult for anyone to navigate because of its rules that require specialized knowledge, its solemnity and strict procedures specific to court hearings, and its prohibitive costs, among other things. Persons with disabilities face additional barriers to accessing the justice system, including: (i) the inaccessibility of the relevant physical spaces; (ii) a lack of appropriate information and communications provided by legal services and institutions; (iii) proceedings that are not adapted to their type and level of disability; (iv) prejudices among judicial staff about persons with disabilities not making credible witnesses and victims; and (v) legal fees and costs that are not affordable to many persons with disabilities (Box 12). These obstacles prevent persons with disabilities from accessing 161 The CRPD is the first international legal document recognizing the right to justice as a stand-alone right. Other aspects related to the right to justice, such as the right to an effective remedy, the right to a fair hearing, the right to file a complaint with an independent authority and to receive fair compensation for the violation of rights, are enshrined in the Universal Declaration of Human Rights (Art. 10), in the International Covenant on Civil and Political Rights (ICCPR, Art. 14), and in most UN treaties: Convention on the Elimination of All Forms of Racial Discrimination, Art. 5 let. (a) and Art. 6; Convention on the Elimination of All Forms of Discrimination against Women, Art. 15 para. (2); Convention against Torture, Art. 13 and 14; Convention on the Rights of the Child, Art. 12 para. (2); Convention on the Protection of the Rights of All Migrant Workers, Art. 18 and 83; Convention on the Protection of all Persons from Enforced Disappearance, Art. 2, 8, 11, and 17. 162 Constitution of Romania, Art. 21. 163 University of Minnesota Human Rights Center (2012). 164 Cappelletti and Garth (1978). 165 In this chapter, we look at access to all stages specific to the administration of justice involving the police, public prosecutor’s offices, courts, lawyers and public notaries, while the issues relating to non-judicial mechanisms, such as the Monitoring Council, the Ombudsman, and the NCCD will be discussed in Chapter 9. 166 For example, a proceeding that might restrict the judge’s consideration of a case involving a person with disabilities due to issues like physical barriers, the lack of accessible judicial information, of legal representation or assistance, of procedural accommodations, of a plain-language court order or of an interpreter does not ensure effective access before the court. 167 Under Art. 13 of the CRPD, ensuring effective access to justice means, first and foremost, that the State party provides the procedural and age-appropriate accommodations required for the participation of persons with disabilities in all legal proceedings, including at investigative and other preliminary stages. Besides Art. 13, the key issues that will be addressed with regard to Problem 2 are based on Art. 2, 4, 9, 14, 15, and 16 of the CRPD. 90 Effective protection of rights all stages of legal proceedings, including from participating effectively in a court trial.168 Barriers impeding access to justice BOX 12 “Many times, we do not know how to act or talk to persons with disabilities. That is the drama that persons with disabilities have to face in court. The non-realization of their rights (especially when they are right) plunges persons with disabilities deeper into suffering and depression.” (Judge, Civil Division) “[To ensure a justice system adapted to the needs of persons with disabilities, I would recommend] that they stop being humiliated through public hearings. That they are respected and accepted as they are. Often, these persons are ashamed of their medical conditions. These persons already have huge problems in life that are caused by their medical conditions and disabilities. Let’s not complicate their lives with excessive bureaucracy. Many of these persons have no income and so a family member becomes their personal care attendant. We should make their lives easier and streamline the proceedings.” (Prosecutor, Public Prosecutor’s Office attached to a local court) “They said I couldn’t see. ‘Denied [as a witness]. They cannot see. What could a blind person see or say?’ They give you no explanation.” (Person with disabilities) “Before the judge, I felt like a criminal. A more distant relative had to actually swear different things on the Bible: that I am always accompanied, that I do not cook alone, all sorts of things. [...] That’s when my fate was sealed. [...] I wasn’t asked what I wanted. I was like a vegetable to them. [...] The people were quite calm and composed, but that was of no use to me, given that I was about to lose all my rights.” (Person with disabilities on placements under guardianship) “There is a forensic psychology institute. But as long as it’s not approved by the Ministry of Justice, the court does not have access to forensic psychologists. The worst thing is the complete lack of intellectual accessibility, which means that a person with intellectual disabilities cannot build their case, that society can challenge them, and many may decline to support or defend a person in that situation.” (Judge, Civil Division) “Unfortunately, the proceedings are not adapted (to persons with visual impairment). For example, they are required to bring two additional witnesses when signing documents. There is excessive formality in the interaction with persons with disabilities, so excessive that it often prevents them from actually participating in social life.” (Lawyer) “Unfortunately, there are times when certain intellectual or mental disabilities go undiagnosed until the trial. Such cases generally concern petitions challenging certain documents concluded by those persons to their detriment (such as wills or donations). Unfortunately, although it is factually clear that the victim of the abuse has altered intellectual abilities, the judicial conclusion is not in favor of the victim. Such anomalies can occur because of inadequate legislation and the lack of interest in [making any] procedural accommodations [to the person’s disability].” (Lawyer) Source: World Bank qualitative research (February-May 2020). Persons with disabilities have more limited access to the justice system than those without disabilities when they need to report an injustice or a rights violation. Only 45 percent of persons with disabilities know what to do or know the rights that they have when they need to resort to the justice system (compared with 55 percent of persons without disabilities).169 Also, a smaller share of persons with disabilities manages to go through all the steps for filing a complaint (44 percent versus 64 percent of persons without disabilities) and making an appeal (19 percent versus 34 percent of persons without disabilities). Ensuring access to justice is particularly important since persons with disabilities, especially those with intellectual and psychosocial disabilities, are disproportionally exposed to violence and neglect. A global analysis found a prevalence of violence 168 For persons with disabilities to effectively participate in a lawsuit, they need to: (i) be able to tell their own side of the story; (ii) understand the reason for the complaint or indictment; (iii) understand the case and the evidence against them; (iv) understand the defense and the options available to them; (v) understand the documents sent in writing; (vi) have a general understanding of the lawsuit; (vii) be able to submit the strongest evidence on their side; (viii) understand the meaning of any sanctions imposed on them; and (ix) understand the requirement for extrajudicial provisions. 169 World Bank survey of persons with and without disabilities (2020). 91 Effective protection of rights against persons with disabilities that is 1.5 times higher than that against persons without disabilities, and suggested that the risk of violence for persons with mental disabilities is four times higher.170 In Romania, in 2019, the GDSACPs recorded 396 complaints and own-initiative enquiries about cases of violence, exploitation, and abuse against persons with disabilities, with 33 percent of them occurring in residential care centers and other residential services.171 The most frequently reported cases concerned physical abuse (31 percent), emotional abuse (21 percent), and neglect (19 percent). The same year, only 24 persons with disabilities (of whom 20 were women) benefited from any services for victims of violence, exploitation, and abuse.172 In 2019, 1,008 deaths were recorded in residential services (927 in residential care centers and 16 in sheltered housing facilities), of which 43 percent were persons with intellectual disabilities. About half of deaths were caused by cardiovascular disease, four cases resulted from violence, and 24 percent were related to respiratory diseases, pneumonia, and tuberculosis.173 In 2018, 1,447 institutionalized persons with disabilities died – 968 in residential care centers and 479 in psychiatric hospitals and wards, and only 97 of the deaths were reported to the police.174 While persons with disabilities living in residential care centers are more exposed to violence and abuse, they also face additional barriers to accessing the justice system. The qualitative research indicates that isolation, restricted access to complaint mechanisms, and negative staff attitudes175 are the reasons why so few persons with disabilities who experience injustice file complaints (Box 13). Moreover, the three autonomous administrative authorities responsible for receiving and investigating petitions from persons with disabilities concerning rights violations (the Council for the Monitoring of CRPD Implementation, the Ombudsman, and the National Council for Combating Discrimination)176 receive few complaints from persons with disabilities living in institutions.177 For example, although the National Mechanism for the Prevention of Torture (NMP) under the Ombudsman – which is also responsible for monitoring residential care centers and psychiatric hospitals – makes recommendations to the managers of those institutions to make it easier for persons with disabilities to actually file a complaint, it does not collect complaints from residents/patients with disabilities during its visits in order to later send them to the Ombudsman for investigation and taking measures.178 170 Hughes et al. (2012: 1621-1629). 171 Currently, most institutionalized persons have intellectual or psychosocial disabilities. According to the 2020 second quarterly statistical bulletin of the NARPDCA, out of the 17,391 institutionalized persons with disabilities, 56.6 percent were persons with mental disabilities and 19.5 percent were persons with psychiatric disabilities. 172 Residential care and assistance centers for domestic violence victims, day centers for domestic violence victims and perpetrators, residential care and assistance centers for human trafficking victims, and day centers for human trafficking victims. 173 Respiratory disorders and cardiovascular disease are more common among persons with mental health and intellectual disabilities due to factors such as less health promotion awareness, high rates of smoking, medication side effects (including weight gain and cardiac abnormalities), inadequate detection by staff of physical disorders, and poorer quality health care because of stigmatizing attitudes of health care staff (Thornicroft, 2006). The mortality rate due to cardiovascular diseases is also higher for persons with mental disabilities (WHO infographic: https://www.who.int/mental_health/management/info_ sheet.pdf?ua=1; Correll et al., 2007). Relative neglect in social care institutions has been identified as one of the factors of increased mortality rates (Amaddeo et al., 2007). 174 Data collected by the Center for Legal Resources for September 2017–September 2018. 175 This is also due to a lack of familiarity with the rights of persons with disabilities of persons living in residential care centers, as highlighted by the qualitative research carried out for the purpose of this report. 176 Law no. 8 of 2016 setting up the mechanisms foreseen by the Convention regarding the rights of persons with disabilities, that establishes the Monitoring Council, Law no. 35/1997 on the organization and functioning of the Ombudsman’s Office, GO no. 137/2000 on preventing and combating all forms of discrimination, GO no. 27/2002 on laying down regulations for petition resolution. 177 For example, the most recent publicly available activity report of the Monitoring Council from 2018 does not mention the notifications sent by the institution to criminal investigation bodies with regard to the deaths that occurred in the institutions or with regard to the violation of the rights of institutionalized persons with disabilities. That is also valid for the reports on the monitoring activities carried out by the Council in 2019. At the same time, the Council receives death notifications from the institutions. In 2018, out of the 1,447 deaths in residential care institutions, 635 were reported to the Council (see laws referenced in the previous footnote). 178 According to the interviews with representatives of the NMP and the Romanian Ombudsman. 92 Effective protection of rights BOX 13 Experiences of institutionalized persons with disabilities trying to access the justice system “I couldn’t do it, it was impossible. I tried [to contact the police, the prosecutor’s office, the court]. But they would tear up your paper. There was a mailbox on the wall, and the manager said that we should slip in a letter about any problem we had. But they would do nothing, they would destroy them, they would do just the opposite. We were medicated, we were sedated.” (Person with disabilities, former resident) “I never did that [contact the police, the prosecutor’s office, the court]. Yes, I would have liked to when I was living in that home, but the police worked hand in hand with the staff there, they would not bring you justice. And, whenever the GDSACP came to visit, the staff would stand close to us, we couldn’t say a word about how things were. And, anyway, I think the GDSACP wouldn’t have believed us.” (Person with disabilities, former resident) “I wanted to sue someone who had stolen my phone through the fence. I wanted to sue the man, but they did not let me. I called the police, and they came. But the following day, I was admonished at the center for having called the police, and they said I should have waited for them to get there first. I told the police what had happened, but I’ve never heard from them again. I do not have any expectations anymore. In the end, they convinced me not to go to court.” (Person with disabilities, former resident) Source: World Bank qualitative research (February-May 2020). Persons with disabilities often experience discrimination or harassment when they turn to the justice system. In the World Bank survey of persons with and without disabilities, 53 percent of persons with disabilities reported that they felt discriminated against or harassed to a great extent when trying to access the justice system, 39 percent of them reported discrimination to some extent, and 9 percent to a small extent. Explanation of the problem Guaranteeing access to justice for persons with disabilities is an objective of the NSPD 2016-2020, but this has not been achieved because the foreseen measures are not being implemented. The NSPD 2016-2020 identified the limited access of persons with disabilities to justice as a major problem caused by “the poor accessibility of institutions and courtrooms, the lack of access technologies or assistive technologies and devices, and the lack of support services.”179 Ensuring that support for effective access to justice is included in the NSPD 2016-2020 as a specific objective (SO.3), along with an objective aimed at ensuring the exercise of civil and political rights for all (SO.2). Although the Operational Plan of the Strategy contains specific measures for accomplishing these objectives, those measures have not yet been implemented. For example, no analysis has been carried out of services that aim to ensure access to justice180 or of the outcomes of any actions taken to diversify those services.181 Nor does the Plan define those support services. Moreover, although the Plan includes a measure to review and amend the law to ensure equal access to justice for persons with disabilities,182 it does not indicate the specific laws that need to be amended nor the outcomes expected to result from those amendments. The NSPD 2016-2020 contains no measures to increase access to justice for persons with disabilities. There are no measures aimed at implementing procedural and age-appropriate accommodations for persons with disabilities involved in legal 179 NSPD 2016–2020, VII.2. Participation—analysis of the current situation. 180 NSPD 2016–2020 Action Plan, VII.2. Participation, Measure 3.1. 181 NSPD 2016–2020 Action Plan, VII.2. Participation, Measure 3.2. 182 NSPD 2016–2020 Action Plan, VII.3. Equality, Measure 2.5. 93 Effective protection of rights proceedings, as pursuant to Art. 13 of the CRPD. Nor are any specific measures included to remove the financial, physical, and information and communication barriers that prevent persons with disabilities from participating fully in legal proceedings or to facilitate access to justice and public legal aid (PLA) for persons with psychosocial or intellectual disabilities. The Strategy does not set out any measures that are consistent with paragraph 2 of Art. 13 and that promote the training of judicial staff on the rights of persons with disabilities and on ways to interact with them so as to ensure that they have effective access to justice. Finally, the Operational Plan should designate the Ministry of Justice as the coordinator of the measures concerned with access to justice, instead of the Superior Council of Magistracy (SCM).183 Five key elements are part of the solution to the problem: 1. The accessibility of infrastructure and services specific to the justice system. 2. The provision of procedural accommodations inherent to the administration of justice. 3. Access to free or affordable legal assistance and representation. 4. The provision of training to staff working in the justice system. 5. The collection of statistical data on all the stages of the justice system. Accessibility of infrastructure and services specific to the justice system Inaccessibility remains the fundamental problem of Romania’s non-inclusive justice system. The government must take action to ensure that all of the infrastructure and services that are relevant to the justice system are built, developed, and provided in a way that ensures access to justice for all persons with disabilities. This includes courtrooms, chambers and hearing rooms, police stations, provisional detention and cross-examination rooms, and prisons (including administrative facilities, restrooms, cells, offices, entrances, elevators, cafeterias, and recreational areas), as well as other services, including information and communications technologies and systems.184 Most Romanian courts lack both physical and information and communications accessibility. In Romania, none of the courts185 (local courts, courts of law, and courts of appeal) is fully physically accessible to persons with disabilities.186 Information accessibility, meaning that information on legal institutions, including websites, can be fully accessed thanks to the use of alternative, augmentative, and Braille options, pictograms, plain language, and audiovisual ways of conveying information – is lacking almost completely in 99 percent of the courts. The lack of judicial information in accessible formats remains a big obstacle to ensuring equal access to justice. PortalJust – the website of the Romanian courts that contains information about 183 The appointment of the SCM as coordinator for implementing measures contravenes the rules governing its organization and operations. The task of coordinating this measure should be carried out by the Ministry of Justice in partnership with the Attorney General’s Office and the NARPDCA. 184 CRPD Committee (2020: 14). All of the systems and technologies, devices, and applications that facilitate communication and the transmission of information—such as telephone or online platforms—should be made accessible. 185 The analysis concerns the accessibility level of 288 courts, which include 15 courts of appeal, 44 courts of law, and 169 local courts. 186 The level of physical accessibility was calculated by evaluating several criteria regarding parking, building access, ramps, entrances into the building, and accessibility of hallways and interior doors as well as that of counters, elevators, and restrooms. Each criterion was assessed by measuring specific items according to the Rules no. 051/2012 on accommodating civil buildings and urban areas to the individual needs of persons with disabilities. 94 Effective protection of rights case files and hearings – is not accessible.187 Also, 75 percent of courts lack accessible communication, in that they do not offer sign language interpretation and do not assign people to assist persons with intellectual and psychosocial disabilities. Police stations are not accessible either. None of the police stations is fully physically accessible and 95 percent lack communication accessibility. On average, only 12 percent of police stations offer sign language interpretation (14 percent in urban areas and 7 percent in rural areas). Currently, police stations do not provide any information in accessible formats (see Annex-Table 13). At present, the Ministry of Justice does not carry out a systematic evaluation of accessibility in the justice system. Monitoring the degree of accessibility provided by public institutions, including those involved in the justice system, to persons with disabilities is the responsibility of the County Agencies for Payments and Social Inspection. Currently, they do not report the findings of their monitoring activities to the Ministry of Justice in a coordinated manner that would make it possible to conduct ongoing evaluations of accessibility in the justice system. Provision of procedural accommodations inherent to the administration of justice Procedural accommodations are essential to ensure equal access to justice. Pursuant to Art. 13 (1) of the CRPD, the provision of procedural accommodations in all the stages of civil, criminal, and administrative proceedings is a necessary condition for ensuring access to justice for all persons with disabilities on an equal basis with others, particularly for persons with intellectual, psychosocial, or degenerative disabilities.188 This obligation derives directly from civil and political rights and cannot be subject to progressive realization. Failure to meet this condition is considered discrimination on the basis of disability. Although the CRPD Committee has not yet formulated recommendations for the interpretation of Art. 13,189 it has stated several principles that should underlie procedural accommodations: (i) providing accommodations without additional costs for petitioners with disabilities and in a confidential manner; (ii) respecting the dignity, autonomy, and preferences of the person with disabilities; and (iii) providing accommodations according to the person’s needs, and not exclusively on the basis of medical information and the degree of disability as these appear, for example, in the disability certificate. Procedural accommodations concern changes to existing procedures or the introduction of new procedures to facilitate effective access to justice. Procedural accommodations190 may involve: (i) providing interpreters to facilitate alternative and augmentative communication (including through sign language); (ii) making available legal and judicial information in accessible formats; (iii) providing assistive and personal assistance technologies; (iv) changing hearing proceedings (for example, the time allocated for answers, the formulation of questions, or changes in light and noise levels in the courtroom); or (v) being flexible regarding specific participation 187 As of September 2020. 188 Procedural accommodations are also mentioned by the CRPD Committee in its General Comment No. 1 as measures to ensure the exercise of legal capacity under Art. 12 para. (4) of the Convention: “Such support [in the exercise of legal capacity] could take various forms, including recognition of diverse communication methods, allowing video testimony in certain situations, procedural accommodation, the provision of professional sign language interpretation and other assistive methods” (CRPD Committee, 2014a, para. (39)). 189 The CRPD Committee generally refers to certain types of procedural accommodations in its concluding observations on the various reports submitted by State parties, mentioning, for example, sign language interpreters (CRPD Committee, 2019c). 190 Procedural accommodations cover aspects related to physical, communication, and information adaptations that exclusively concern the implementation of procedures specific to the administration of justice (such as investigation or court hearing). 95 Effective protection of rights requirements – for example, allowing remote participation and testimony via audiovisual means, changing the hearing venue, allowing interpreters in the courtroom including in hearings that are not public, extension or adjustment of procedural time limits, and adapting the procedural steps and schedule. The CRPD Committee191 has recently drawn up guidelines for ensuring access to justice for persons with disabilities that offer a detailed description of the kinds of procedural accommodations – including types of communication support – that may be required to realize this right (see Box 14). Examples of procedural accommodations recommended by the CRPD BOX 14 Committee The CRPD Committee recommends that States should provide a range of procedural accommodations including: 1. Independent intermediaries and facilitators trained to provide assistance regarding the communication among all parties involved in the proceedings and the justice system to determine which accommodations and support are necessary and appropriate and to assist with communication throughout the course of the proceedings. 2. Procedural adjustments and modifications for hearings such as: (i) adaptation of the venue; (ii) appropriate waiting spaces; (iii) removal of magistrates’ cloaks and wigs; (iv) adjustments to the pace of the hearing; (v) modifications to the method of questioning in appropriate circumstances, such as allowing leading questions, avoiding compound questions, finding alternatives to complex hypothetical questions, providing extra time to answer, permitting breaks as needed and using plain language; (vi) use of pretrial video recording of evidence and testimony if necessary, practical, and possible in such a manner as not to contravene basic rights, such as the right to confront and cross-examine witnesses; and (vii) allowing persons with disabilities to be accompanied at all stages of the process by family, friends, or others to provide emotional and moral support, without replacing the role of an intermediary or facilitator. 3. Communication support consists of: Ensuring the technical or other support necessary for all parties involved in the process to use any form of communication as necessary for their full participation, such as: (i) assistive listening systems and devices; (ii) open, closed and real-time captioning and closed caption decoders and devices; (iii) voice, text, and video-based telecommunications products; (iv) videotext displays; (v) computer-assisted real-time transcription; (vi) screen reader software, magnification software, and optical readers; and (vii) video description and secondary auditory programming devices that pick up audio feeds for television programs. Supporting communication such as note-takers, qualified sign language and oral interpreters, relay services, and tactile interpreters. Ensuring that all interpreters are able to interpret effectively, accurately, and impartially, both receptively (understanding what persons with disabilities are saying) and expressively (having the skill necessary to convey information back to persons with disabilities), while using any necessary specialized vocabulary (such as legal or medical) and respecting professional and ethical standards. Source: CRPD Committee (2020: 15–16). The Committee has recommended that State parties should take measures to provide procedural accommodations. State parties should review their legislation, explicitly indicate the authority responsible for the provision of procedural accommodations, provide details about where and how a person with disabilities can gain access to them, and indicate the authority in charge of evaluating the 191 Along with the UN Special Rapporteur on the rights of persons with disabilities and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility. 96 Effective protection of rights provision of such accommodations.192 This obligation is also set out in the EU Directive on victims’ rights, which asks Member States to “ensure that communications with victims are given in simple and accessible language, orally or in writing” and that such communications take into account “any disability that may affect the ability to understand or to be understood.”193 Procedural accommodations must be provided for every person in accordance with the type and degree of their disability and cannot be restricted by costs. The obligation of State parties to provide procedural accommodations is different from their obligation to ensure accessibility and reasonable accommodation under Art. 2 and 9 of the CRPD.194 The CRPD Committee makes a clear distinction between the provision of accessibility as an ex-ante duty of the State before the person needs or claims access to a certain service and the provision of reasonable accommodation as an ex-nunc duty to adjust the built environment and all information and communications to the needs of an individual in a particular situation.195 As for guaranteed access to justice, the Committee emphasizes the need to ensure the physical and information and communications accessibility of buildings and services provided by the police and judicial bodies.196 At the same time, the existing literature highlights that procedural and age-appropriate accommodations referred to in Art. 13 may be “more generic and less individualized in approach than the obligation in Art. 5 of the Convention to provide reasonable accommodation to persons with disabilities.”197 Consequently, the “obligation to provide such accommodations cannot be affected by arguments concerning cost reasonableness and the extent of the burden on those responsible” since the state is the main provider of such accommodations in the administration of justice.198 Romanian law offers some guarantees of procedural accommodations aimed at certain groups of people, including persons with disabilities. In practice, Romanian criminal law sets forth the possibility of using a sworn interpreter or any person with the appropriate communication skills to hear a person with speech or hearing impairment or when the suspect, defendant, or plaintiff does not understand, cannot be understood, or cannot express themselves properly.199 Persons with hearing or speech impairments are also given the alternative of using written communication. If the person with disabilities is the aggrieved party, then the hearing may be held in specially designed or adapted facilities with support or in the presence of a psychologist or another professional providing counseling to victims, and their hearing or rehearing will be conducted by the same person and will be recorded using audio or audiovisual means.200 If the suspect or the defendant has a serious illness, as certified by a forensic report, that is reason enough to suspend the criminal investigation or the trial.201 In civil cases, procedural accommodations are limited to allowing persons with speech or hearing impairments to take the oath through a transcription or a sign language interpreter, to hearing them wherever they are located (in the case of witnesses), and 192 Human Rights Council (2017a). 193 Art. 3 para. (2), Chapter 2, Provision of information and support; Art. 3, Right to understand and to be understood; Directive 2012/29/EU of the European Parliament and of the Council of October 25, 2012 establishing minimum standards on the rights, support and protection of victims of crime, and replacing Council Framework Decision 2001/22/JHA. 194 Bantekas et al. (2018: 395). 195 CRPD Committee (2014b, para. (25)). The distinction is also consistent with the definition of reasonable accommodation under Art. 2 of the Convention. 196 CRPD Committee (2014b, para. (23)). 197 Flynn and Eilionóir (2015: 36). 198 Flynn and Eilionóir (2015: 36). 199 Criminal Procedure Code, Art. 105 and Art. 106 paras. (1) and (2). 200 Criminal Procedure Code, Art. 111 paras. (4) and (6). 201 Criminal Procedure Code, Art. 312 and Art. 367. 97 Effective protection of rights to the possibility of allowing them to be represented by a lawyer, a proxy, or, where applicable, a guardian or a conservator when court appearance is mandatory.202 Procedural accommodations must be granted to persons with intellectual and psychosocial disabilities who commit crimes. Currently, the Romanian law stipulates the mandatory medical commitment as a security measure in the case of persons who committed a criminal act, have a “mental disorder” and are a danger to society.203 The CRPD Committee recommends eliminating security measures that include the commitment to a psychiatric unit or the mandatory psychiatric treatment in the case of persons that were found not criminally responsible due to “insanity” or incapacity.204 In addition, the UN High Commissioner for Human Rights emphasizes that recognition of legal capacity requires abolishing this practice that invokes the mental or intellectual disabilities of persons who commit crimes and applying a disability-neutral doctrine. In effect, in the case of these persons, compliance with Art. 13 of CRPD on access to justice may require procedural accommodations throughout the criminal proceedings.205 On June 1, 2020, there were 1,424 persons committed to forensic hospitals, of which about 14 percent had a disability certificate, most for psychosocial disabilities.206 About 10 percent were placed under guardianship. Besides these limited legal provisions on procedural accommodations, there are also certain gaps in the institutional framework that should regulate the implementation of these measures. Currently, there is no mechanism for reporting the absence of procedural accommodations. The only competent authority to do so is the Judicial Inspection Agency, but its responsibilities are more concerned with the overall improvement of legal proceedings and the efficiency and effectiveness of the justice system. The qualitative research has revealed that judicial employees are not familiar enough with the notion of procedural accommodation and were thus unable to identify any issues pertaining to the administration of justice that violate the right to justice of persons with disabilities. In practice, the procedural accommodations provided to persons with disabilities in the justice system are limited. Some magistrates sometimes adapt rigid procedures to the specific needs of persons with disabilities, for example, by declaring the hearing private or adjusting certain aspects related to the solemnity of the court sitting. However, the interviewed magistrates highlighted the lack of access to expert psychologists who could facilitate understanding and communication for persons with disabilities throughout the course of a lawsuit as a shortcoming. Recently, the COVID-19 pandemic has required the introduction of some measures, such as video conferencing, to ensure that the whole population has access to justice during the pandemic, which could also facilitate access for persons with disabilities who would otherwise normally face barriers. However, these measures also create some difficulties that will need to be addressed in order to ensure effective access for persons with disabilities (see Box 15). 202 Civil Procedure Code, Art. 319 para. (7), Art. 314, and Art. 921. 203 Criminal Code Art. 110. The provision specifies that the security measure of medical commitment to a health unit must be enforced until the person recovers or until his or her state improves, and the state of danger is eliminated. 204 CRPD Committee (2015a, para. (20)). 205 Human Rights Council (2019, para. (47)). 206 About 80 percent of the persons committed were reported as having a psychosocial disability (even though they did not have a disability certificate). 98 Effective protection of rights BOX 15 Challenges presented by the use of video conference hearings For very urgent cases whose proceedings continued during the state of emergency imposed by the COVID-19 pandemic, Decree no. 195/2020 (published in the Official Gazette no. 212 of March 16, 2020) laid down an expedited resolution procedure, allowing the courts to schedule proceedings very quickly, for example, the following day or even on the same day. The decree rule d that court hearings could be held via a video conferencing system, and procedural documents could be communicated via electronic or other means that enable acknowledgement of receipt. Nevertheless, it can be difficult for a lawyer to send instructions and provide legal advice to a client with intellectual and/or psychosocial disabilities through an online audiovisual system, which does not always allow the person with disabilities to express themselves in a clear and coherent manner or for invisible disabilities to be identified. These difficulties can be exacerbated by poor video or sound quality, with echo or delay effects, or by the fact that the person with disabilities cannot read the words addressed to him/her on the lips or faces of the judge, lawyer, or prosecutor. This can make communication difficult for everyone. All of these setbacks can also create even more problems for persons with intellectual and/or psychosocial disabilities or with degenerative diseases since they are unable to see the whole courtroom and the other parties in the lawsuit. Also, the online submission of applications to the court registry has been problematic for many persons with disabilities who do not have access to computers, as evidenced by the interviews with magistrates carried out for the preparation of this report. The legislative and institutional frameworks should be supplemented with a set of norms to ensure the adequate provision of all procedural accommodations. Such provisions should comprise: (i) the definition of procedural accommodations for all types and degrees of disability; (ii) the specific measures to be taken to accommodate each of these groups; (iii) a list of institutions responsible for training relevant personnel and for monitoring and evaluating the implementation of accommodations and a description of their duties; and (iv) allocated resources. These norms should focus on making every institution involved in the administration of justice accountable and aware of the need to collect and publish data on the implementation of these measures and on ensuring that the Ministry of Justice develops and disseminates a detailed and effective petition procedure adapted to the needs of persons with disabilities. An example of a legislative framework is detailed in Box 16. Adapting investigation and hearing proceedings for persons with disabilities BOX 16 in Israel In 2005, Israel passed the Investigation and Testimony Procedural Act (Accommodations for Persons with Mental or Cognitive Disabilities). This law establishes several comprehensive procedural accommodations meant to ensure access to justice for persons with mental disabilities, as follows: 1. Police investigations are conducted by a person who has undergone special training to be able to communicate and interact with persons with disabilities and to take them through all the stages in an accessible language. The preferred hearing method is video recording. 2. Testimony in court: Admissibility of the complaint without in-person testimony (if the court believes that testifying might harm the person with disabilities). Accommodations relating to the setting in which the testimony is given (testifying, for example, behind a screen, off the witness stand, in the judge’s chambers, outside the court building, or accompanied by a person known to the witness). Cross-examination of a witness with a disability (the court can order that the person with disabilities is not cross-examined, especially if they are a victim of sexual assault). 99 Effective protection of rights Accommodations affecting the credibility and the meaning of the testimony (these accommodations touch upon the most substantive aspects of the court’s role, intervening in the means of communication between the judge and the person with disabilities, through the provision of various adapted methods of communication, of a counselor rephrasing the information communicated by the court to the person with a disability, or of a mental health professional who can communicate with and interpret the behavior and gestures of the person so as to convey to the court an alternative sense of their meaning). Sursa: Ziv (2007). Provision of access to free or affordable legal assistance and representation Effective access to justice cannot be achieved without access to legal assistance and representation. Although this is not explicitly included in Art. 13 among the conditions for ensuring effective access to justice on an equal basis with others, the CRPD Committee has reiterated the duty of the States to provide assistance and representation207 to persons with disabilities free of charge or at a reasonable cost.208 Moreover, the Committee has stressed the obligation of the State to provide legal assistance to financially challenged and institutionalized persons with disabilities,209 since institutionalization is an additional barrier to accessing legal information, assistance, and representation. The Committee specifically mentioned girls and women with disabilities as facing extra barriers to obtaining effective judicial remedies, especially with regard to “exploitation, violence, and abuse due to harmful stereotypes, discrimination, and lack of procedural and reasonable accommodations, which can lead to their credibility being doubted and their accusations being dismissed.”210 In Romania, free access to justice is safeguarded by civil and criminal laws, and certain categories of persons are entitled to free legal assistance. In civil cases, access to legal assistance is guaranteed to those who “are unable to cover the expenses required to initiate and pursue a civil action.”211 Based on amendments made in 2008, existing legislation provides that persons with disabilities212 in particular can submit to a court at any stage of the proceedings a request for public legal aid. This form of legal assistance granted by the state covers the expenses that they incur to pay the appointed or chosen attorney, expert, translator, or interpreter used in the course of a lawsuit, plus any bailiff expenses. The public legal aid also grants exemptions from, reductions in, or installments or deferrals of any legal fee payments stipulated by law, 207 Legal assistance means any professional activities carried out by lawyers to promote and defend the rights, freedoms, and legitimate interests of individuals and legal entities, governed by public or private law. It may consist of: legal advice and requests; legal assistance and representation before courts, criminal investigation bodies, jurisdictional authorities, public notaries and bailiffs, public administration bodies and institutions, and other legal entities, as prescribed by law; assistance and representation of natural or legal persons before other public authorities; any specific means and methods for exercising the right to defense as provided for by law. 208 CRPD Committee (2013a, para. (30) let. a); 2019c, para. (20)). 209 CRPD Committee (2014a, para. (26) let. (b); 2019d, para. (22) let. (b). 210 CRPD Committee (2016a, para. (52)). “Procedures or enforcement attitudes may intimidate victims or discourage them from pursuing justice. These can include: complicated or degrading reporting procedures; referral of victims to social services rather than legal remedies; dismissive attitudes by police or other enforcement agencies. This can lead to impunity and invisibility of the issue, resulting in violence lasting for extended periods of time. Women with disabilities may also fear reporting violence, exploitation or abuse because they are concerned that they may lose their support requirements from caregivers.” The Committee noted a lack of access to justice in criminal cases related to sexual offences against women with disabilities (CRPD Committee, 2017, para. (26) let. c)). 211 Civil Code, Art. 90. 212 Pursuant to GEO no. 51/2008, Art. 8 para. (1). 100 Effective protection of rights including legal fees payable during the enforcement phase.213 For criminal cases, the legislator ruled that legal assistance is mandatory when involuntary commitment has been established as a security measure for the suspect or the defendant,214 when the aggrieved party or the plaintiff is a person totally or partially deprived of their legal agency, or when the judicial body considers that the suspect or the defendant would be unable to defend themselves and therefore appoints a public defender.215 Persons with disabilities face barriers to accessing the free legal assistance stipulated by law. Persons with disabilities can claim public legal aid only for disputes that are directly related to their disability, which may limit their access to justice. Also, the provision stating that only the fees of the interpreter used in the course of the lawsuit will be reimbursed for appearances in front of the court can restrict the rights of a person with disabilities, for example, to gather evidence or prove certain facts during other stages of the trial. Moreover, for a family member without disabilities (for example, a single mother looking after a child with disabilities who asks the court to suspend the injunction order), access to justice cannot be guaranteed based on the provisions of the special law.216 In this case, the person has to prove their lack of income by producing a multitude of documents (for example, those issued by the tax administration and the Mayoralty), which is another hurdle to accessing justice.217 A series of other laws also hamper the access of persons with disabilities to legal assistance. Law no. 448/2006 derogates from the special law by providing the right to legal assistance only for those persons with disabilities who are unable to manage their personal assets.218 In theory, Law no. 292/2011 established that personal care services may be supplemented by legal advice, but the law did not set up any framework for this.219 Order no. 68/2003 on social services established that one of the functions of specialized social services consists of providing legal advice, but there is no express legal provision on how to provide it.220 In practice, access to free legal assistance is also hindered by the lack of procedural accommodations. According to the interviews with lawyers and magistrates that were conducted as part of the qualitative research, judges make an effort to provide persons with disabilities with pro bono assistance or other solutions, but it is difficult to guarantee representation for persons with mental disabilities because of the difficulty of ensuring that modes of communication can be adapted to their needs.221 At the 213 GEO no. 51/2008 on public legal aid in civil cases, Art. 6 let. a), b), c), and d). Public legal aid may be granted in the following forms: (i) payment of the fees due to the appointed or chosen attorney for representation, legal assistance and, where applicable, defense by an appointed or chosen attorney to realize or defend a right or legitimate interest in court or to avert a dispute; (ii) payment of an expert, translator or interpreter used in the course of the lawsuit, with the approval of the court or jurisdictional authority, where the responsibility for such payment rests with the claimant of public legal aid, according to the law; (iii) payment of the fees due to the bailiff; and/or (iv) exemptions from, reductions, installments or deferrals of legal fee payments stipulated by law, including legal fees payable in the enforcement phase. 214 Criminal Code, Art. 90 para. (1). 215 Criminal Code, Art. 90 let. b) and Art. 93 paras. (4) and (5). 216 GEO no. 51/2008. 217 Nevertheless, according to the ruling made by the European Court of Justice in the Coleman case (Case C303/06) [23], Directive 2000/78/EC) on equal treatment applies not only to persons with disabilities but also to their families, since the purpose of the fight against discrimination does not concern a specific group of people but the nature of discrimination. 218 Law no. 448/2006, Art. 25 para. (2): “Where the person with a disability, irrespective of age, is fully or partially unable to manage their personal assets, they shall benefit from legal protection in the form of conservatorship or guardianship and from legal assistance.” 219 Law no. 292/2011, Art. 33 para. (2): “Personal care services may be accompanied by social counseling, legal advice and information services, supplemented by Emergency Ordinance no. 32/2020 at Art. 28 para. (3) point 1 let. a) with provisions on contracting or hiring specialists for the provision of legal counseling services, by telephone or by other electronic means, when certain social actions for the benefit of the person must be carried out in a coherent, unitary and efficient manner. 220 Order no. 68/2003 on social services, Art. 3^6 let. l). 221 As a measure to ensure free or affordable legal assistance, the CRPD Committee recommended that State parties make all procedural accommodations—such as interpreters, assistive technologies, and intermediaries or facilitators—available to lawyers to support their effective communication with clients with disabilities or other persons with disabilities involved in legal proceedings (CRPD Committee, 2020: 21). 101 Effective protection of rights same time, the need for persons without disabilities to gather and complete the required documents and submit them on time hampers the provision of public legal aid to them as well. This is even more of an obstacle for incapacitated persons or those under guardianship who depend on a guardian or a conservator to draw up, sign, and submit discovery motions, file legal actions, and make appeals. Currently, no information is available about the number of persons with disabilities who have benefited from legal assistance and PLA, or on the types of costs covered by PLA, such as the payment of assistants through the lawyer or interpreting services. Furthermore, prisons do not collect any data on how many persons with disabilities have claimed or received free legal assistance. Access to free legal assistance should be facilitated for persons with disabilities who are in vulnerable circumstances. Free legal assistance should be provided to persons with disabilities who are “at risk of experiencing: (i) loss of life or liberty, including by imprisonment, detainment, placement in an institution, forced or involuntary medical treatment (such as sterilization), or involuntary hospitalization; loss of legal capacity (such as guardianship); or loss of family integrity by forfeiture of parental or custodial rights; (ii) loss of housing, shelter, or property; or (iii) any other situation, including all criminal matters that do not carry the risk of incarceration, small claims, and civil cases, in which a person with disabilities may be disadvantaged in communicating, understanding, or making herself/himself understood in the process.”222 Using mobile services to ensure access to justice for persons with disabilities, BOX 17 New York Legal Mobile New York Legal Mobile is part of New York Legal Assistance Group (NYLAG) and provides mobile legal services in a van equipped with two offices for lawyers and a waiting room (including a wheelchair ramp). For emergency cases, the lawyers can contact the judges via videoconference, and the latter can issue restraining orders and other urgent decisions. The NYLAG team works with local community members (including social, medical, and religious services) to announce the time, day, and place where the mobile legal office will be parked. NYLAG provides free legal counsel to vulnerable people (including persons with disabilities) in the form of direct representation, advice, advocacy, community education, training, and financial counseling. It has formed partnerships with medical and social service providers in order to take a holistic approach to clients’ needs. It offers legal services in 125 offices located in courts, hospitals, and community-based organizations. NYLAG’s services also include patient rights training courses for doctors and social workers and “legal navigators” who are social work students who help clients to adopt the solutions proposed by NYLAG. Source: NYLAG (2020). Training of staff working in the justice system Professionals working in the field of justice administration should be trained on how to provide access to justice for persons with disabilities. Training is a requisite for ensuring effective access to justice under Art. 13 para. (2) of the CRPD, and the Committee has repeatedly recommended that the States train their professionals in this field (see Box 18).223 The most vulnerable persons with disabilities, particularly those with intellectual disabilities, psychosocial disabilities, degenerative diseases, or those who are institutionalized, need services delivered by properly trained professionals. At the same time, the European Committee for the Prevention of Torture recommends providing training to prison officers “as part of their basic education, in how to interact with and offer support to prisoners with disabilities.”224 222 CRPD Committee (2020: 21). 223 CRPD Committee (2019a, para. (26) let. f), 2019b, para. (25) let. c)). 224 Council of Europe and the European Committee for the Prevention of Torture (2019). 102 Effective protection of rights BOX 18 Recommendations of the CRPD Committee on the training of judicial staff 1. “Provide systematic and ongoing training of members of the judiciary, law practitioners, and law enforcement officials on the Convention and the obligation to ensure physical access and accessible legal services” (Algeria, Concluding observations on initial reports, September 21, 2018). 2. “Measures to increase the number of training and capacity-building programs on the Convention for law enforcement personnel” (Armenia, Concluding observations on initial reports, May 8, 2017). 3. “Standard and compulsory modules on working with persons with disabilities to be incorporated into training programs for police officers, prison staff, lawyers, the judiciary, and court personnel” (Australia, Concluding observations on initial reports, October 21, 2013). 4. “The State party to set up in-service training programs on the rights of persons with disabilities for judicial personnel, the police, prison personnel, and other justice officials” (Bolivia, Concluding observations on initial reports, November 4, 2016). 5. “Guidance and training to the justice system personnel at all levels in order to implement the Canadian Victims Bill of Rights Act, in particular its provisions for measures to facilitate the testimony of persons with psychosocial and/or intellectual disabilities during judicial proceedings, paying particular attention to persons with disabilities who seek redress” (Canada, Concluding observations on initial reports, May 8, 2017). 6. “Training to personnel in the judicial and law enforcement sectors on the right of all persons with disabilities to marriage, family, parenthood, and relationships on an equal basis with others, including their right to retain [their] fertility and have a family, as outlined in Art. 23 of the Convention” (Italy, Concluding observations on initial reports, October 6, 2016). However, the amount of training provided for judicial staff on disability rights, including equal access to justice, is currently very limited. In order to be able to offer services to and interact with persons with disabilities appropriately, judicial employees need adequate training, which is currently not being provided.225 Magistrates, for example, are not trained in this field prior to their admission to the NIM, a problem that was stressed by the representatives of both the Ministry of Justice and NIM during the qualitative research conducted for this report. The NIM, with the approval of the SCM, organizes the magistracy admission exam as well as basic and further training, but none of these courses or modules cover procedural accommodations or other issues concerning access to justice for persons with disabilities. The NIM does not employ any trainers who specialize in disability rights. Also, unlike other countries (Box 19), Romania does not have any graduate and postgraduate courses or programs focused on the rights of persons with disabilities. Good practices regarding the training of law students on disability rights BOX 19 US law schools have incorporated disability rights into parts of their curricula areas and into further education programs. For example, the American University Washington College of Law in Washington, D.C. offers a master’s program called the “Disability and Human Rights Program” aimed at educating law students on the rights of persons with disabilities and encouraging students to promote access to justice for those persons. Through the Disability Rights Law Clinic, which is managed by professors from the same law school, students provide low-cost legal services to persons with disabilities and their families to help to increase access to justice for persons with disabilities and expose law students to the concept of the rights of persons with disabilities early on in their careers (American University, Washington College of Law, 2020). In Ireland, the National University of Ireland, Galway runs a master’s program on International and Comparative Disability Law and Policy through the Centre for Disability Law and Policy. Moreover, it also offers a summer program on international disability law to law students from around the world (National University of Ireland, Galway, 2020). 225 As previously highlighted under Measure 3 of the first problem. 103 Effective protection of rights At present, there is no functional monitoring system with indicators for tracking and assessing the level of disability training being provided nationwide in the justice system. Without regular monitoring through a set of relevant indicators, there is no way to know how much training is being provided and the extent of any efforts being made to increase it. Such a monitoring system should exist for each institution involved in the administration of justice. The SCM submits an annual report on the state of justice to the joint Chambers of the Romanian Parliament, and this report should also contain information about the interdisciplinary training of those involved in the administration of justice.226 Ideally, the Justice System Development Strategy 2020-2025 should also include indicators that measure any training being given to magistrates and prison employees on ensuring access to justice for persons with disabilities. At the moment, Romania has no guidelines for the institutions and professions involved in the justice system on how to ensure access to justice for persons with disabilities. In the short term, these guidelines should cover the need for training and could become important resources for carrying out their professional activities in a way that respond to the specific needs of persons with disabilities. A different set of these guidelines should be developed for each profession within the justice system (such as the police, prison officers, courtroom staff, or lawyers) that focus on the specific proceedings that involve persons with disabilities. Several countries in the European Union have already implemented training modules for professionals working in the justice system.227 Collection of statistical data at all the stages of the justice system, including the number of persons subject to mandatory medical hospitalization The collection of relevant data is an essential step towards assessing the extent to which persons with disabilities have access to justice. A consistent and coordinated data collection process is an essential prerequisite for the production of rigorous analyses of the state of the judiciary system and the development of possible solutions.228 Art. 31 of the CRPD requires State parties to collect “appropriate information, including statistical and research data” to formulate relevant evidence- based policies as well as to “enable them to formulate and implement policies to give effect to the Convention” and “to identify and address the barriers faced by persons with disabilities in exercising their rights.”229 At the European level, the EU Victims’ Rights Directive requires Member States to “communicate to the Commission” every three years “the data showing how victims have accessed the rights set out in this Directive.”230 226 The Action Plan for the implementation of the Justice System Development Strategy 2015–2020 approved under Decision no. 282/13 April 2016 does not include indicators regarding the training of magistrates and NPA employees on ensuring access to justice for persons with disabilities. 227 For example, the Government of Scotland developed guidelines for the training of professionals working in the criminal justice system, useful also to persons with learning disabilities and their families (Bowden et al., 2011), whereas in Spain, Guardia Civil drew up guidelines for police officers on interacting with persons with intellectual disabilities (FRA and Council of Europe, 2016: 162). 228 Recommendation also underlined by the CRPD Committee (2019a, para. (25) let f)). 229 CRPD, Art. 31 paras. (1) and (2). 230 Art. 28 of Directive 2012/29/EU of the European Parliament and of the Council of October 25, 2012, establishing minimum standards on the rights, support and protection of victims of crime, and replacing Council Framework Decision 2001/220/JHA, OJ L 315/57. 104 Effective protection of rights Currently, there is no specific system at the Ministry of Justice or at the inter- ministerial level to collect statistical data disaggregated by disability. If these data were collected, it would make it possible to pinpoint barriers faced by persons with disabilities who want to address the justice system or whose rights are being violated and to find solutions to remove these barriers. Therefore, every institution within the justice system or involved in the process of administration of justice must collect data disaggregated by disability that provide a view of the level of access to justice for persons with disabilities. At present, these institutions have yet to implement systems to collect specific data (Box 20). Currently, the justice system institutions use different systems to collect and process information, which hinders access to justice for persons with disabilities. The lack of a unitary data collection system makes it impossible for information about a claimant, accused, defendant, or witness to be passed on from one institution to another and be synchronized. The information needed, for example, to implement procedural accommodations is not shared among institutions, which means that authorities and courts of law need to make additional efforts to identify or assess the needs of persons with disabilities who are parties to the proceedings. The process of making procedural accommodations and modifications is a proactive task that must be carried out on an ongoing basis. This task involves the a priori and perpetual analysis of the needs of persons with disabilities by these institutions in order for them to provide the most appropriate accommodations. Once collected, this information has to be made available to all relevant actors in the justice system to facilitate the effective access of persons to disabilities to all of the procedural stages.231 Central and local public institutions need to establish a common database that integrates information from all fields and from all levels of the administration of justice so that data on persons with disabilities are known and can be used to improve their access to justice. The status of statistical data collection on the access to justice of persons BOX 20 with disabilities 1. The Ministry of Justice has no system for collecting data from courts of law on: (i) court proceedings involving persons with disabilities; (ii) the subject matter of such cases; (iii) on the type of procedural accommodations provided to persons with disabilities; (iv) on the standing of the persons with disabilities involved in the trial; (v) on the form of legal assistance from which they have benefited; (vi) on the number of persons with disabilities subject to court decisions on placement under guardianship; and (vii) on the number of persons with disabilities who requested the discontinuation of the measure or the replacement of their guardian. Nor are any data collected on the number of magistrates and clerks with disabilities or on their needs that have to be met in order to be able to work in the justice system. 2. The Ministry of Internal Affairs does not collect any data from police precincts on: (i) petitioners with disabilities and their role in the case (for example, injured person, suspect, or defendant); (ii) the type of disability (physical, sensory, intellectual, and/or psychosocial); (iii) the available procedural accommodations for conducting the interrogation at the police precinct; (iv) the type of criminal offense; and (v) the number of persons with disabilities in protective police custody or deprived of their liberty. 3. The Public Ministry does not have any record of the number of denunciations or complaints lodged with the prosecutor’s offices by persons with disabilities or on their behalf or the number of those finalized with an order to start criminal proceedings, an order of indictment, or to file the case by types of criminal offenses, role of the disabled person, their place of origin (community or residential institution), or the procedural accommodations provided. 231 For guidelines, see the UN Havana Rules, which provide that the records relating to every juvenile deprived of liberty include “details of known physical and mental health problems, including drug and alcohol abuse,” Art. 21, United Nations General Assembly, Resolution no. 45/113, “UN Rules for the Protection of Juveniles Deprived of Their Liberty,” December 14, 1990, A/ RES/45/113. 105 Effective protection of rights 4. The National Administration of Penitentiaries collects data on the number of detainees with a disability certificate and of those who have a personal assistant, but it does not collect any data on the number of detainees with a disability who benefited from legal assistance and procedural accommodations in order to file a complaint during the period when they are deprived of their liberty. 5. The Ministry of Health does not collect any data from its institutes or services of forensic medicine or from psychiatric hospitals on the number of persons with disabilities: (i) who were subject to involuntary or voluntary hospitalization; (ii) who came from residential centers; (iii) who complained about being subjected to ill-treatment; and (iv) who were victims of crimes confirmed by a forensic expert. 6. The Romanian National Union of Bar Associations does not collect any disaggregated data on the number of persons with disabilities who benefited from LPA by type of case and type of LPA among the total number of LPA applications. 7. The National Union of Public Notaries in Romania (NUPNR) does not collect any data on the number of persons with disabilities for whom a conservator or a guardian has been appointed by the type of notarial deed that was concluded. 8. The Guardianship Authority Services do not collect any data on the number of persons with disabilities subject to a court decision of placement under guardianship who are in conflict with their guardians and who need support in order to file a complaint. 9. The National Authority for the Rights of Persons with Disabilities, Children, and Adoptions does not collect any data on the number of persons with disabilities who have interacted with the justice, police, penitentiary, or mental health facilities and have required legal assistance, procedural accommodations, or counseling to support them in filing a claim. Recommended measures The following measures are recommended: 1 The focal point within the Ministry of Justice232 to develop and publish an annual plan of measures to ensure access to justice for persons with disabilities and a report with the results following their implementation, including information on the extent to which physical and information and communication accessibility and procedural accommodations have been achieved. 2 The Superior Council of Magistracy (SCM), the Ministry of Justice, the Public Ministry, and the Ministry of Internal Affairs (MIA) to: (i) elaborate and promote the regulatory framework for procedural accommodations intended for persons with disabilities throughout the judicial proceedings, as well as for informing them about the existence of such accommodations and how to request them; (ii) designate bodies/authorities responsible for monitoring the provision of procedural accommodations throughout the justice system; (iii) elaborate and disseminate guidelines on procedural accommodations; and (iv) adopt specific hearing procedures for persons with disabilities, to ensure their fair treatment and full participation during the proceedings, including of children with disabilities. 3 The Ministry of Justice to implement and monitor a program for providing free legal assistance and legal representation or at a reasonable cost to persons with disabilities and their families who do not have enough financial means to pay for legal aid. 4 The Ministry of Justice and the Romanian National Union of Bar Associations (RNUBA) to publish annual data on the budget allocated and spent on public legal aid (PLA) for persons with disabilities and their families out of the total 232 Established within the Human Rights Directorate under the provisions of Law no. 8/2016. 106 Effective protection of rights annual expenditure disbursed by the Ministry of Justice to the RNUBA for this purpose, indicating at a minimum the form of aid granted, the court of law, the cause of the case, the type of disability, and the place of origin of the person with disabilities having received PLA; for example, residential center, psychiatric hospital/security measures, or family. 5 The NARPDCA, in partnership with the SCM, the National Institute of Magistracy (NIM), the Ministry of Justice, the Public Ministry, the MIA, the National Institute for Lawyer Training (NILT), and the RNUBA; along with human rights institutions such as the Romanian Ombudsman, the National Council for Combating Discrimination (NCCD), and the Council for Monitoring the Implementation of the Convention, and with the direct participation of DPOs and human rights NGOs, to elaborate and adopt the topics, detailed content and course methodology for the training on the CRPD of lawyers, prosecutors, judges, police officers, and prison staff. 6 The SCM, the NIM, the Ministry of Justice, the Public Ministry, the MIA, the NILT, RNUBA, and the National Administration of Penitentiaries (NAP) to provide the training of lawyers, prosecutors, judges, police officers, and prison staff regarding the CRPD. 7 Law faculties, the Police Academy, and the National School for the Training of Prison Agents to ensure the offer of standard and mandatory modules on working with persons with disabilities for their students. 8 The Ministry of Justice, the MIA, the Public Ministry, the NAP, the Ministry of Health, the RNUBA, and the National Union of Public Notaries in Romania (NUPNR) to implement a nationwide system of indicators for monitoring the rights of persons with disabilities in their fields and to report annual disaggregated data by age, sex, level of disability, area of residence, and place of living (residential centers or community living). 9 The Ministry of Justice to complete the architecture of the European System of Information on Criminal Records (ECRIS) to collect, analyze, and publish information on access to justice for persons with disabilities based on disaggregated data about the number of persons with disabilities accessing the justice system in different courts of law, the number receiving legal aid, the form of legal aid, and the causes of cases that involve persons with disabilities as parties. 10 The central public administration authorities (the Ministry of Justice, the MIA, the Public Ministry, and the NPA) and their respective institutions (police stations, courts of law, prosecutors’ offices, and penitentiaries) to publish information on the access to justice of persons with disabilities in their annual activity reports.233 11 The Ministry of Justice, the MIA, the Public Ministry, the NARPDCA, and the General Directorates for Social Assistance and Child Protection (GDSACPs) to improve the complaint procedures regarding rights violations to ensure that they are available, accessible, and that they respect confidentiality, especially for institutionalized persons with disabilities, by providing formal or informal help such as “peer to peer” or other types of support. 233 The annual reports should at a minimum include information related to: physical and information and communications accessibility, type and availability of procedural accommodation, number of participants in training programs, information on legal guardianship, and amount and type of public legal aid available to persons with disabilities. 107 Employment 3.Employment 3. Adriana Adriana holds a PhD in Philology and she is currently the head of the Service for Institutional Development within the National Library of Romania. From this position she liaises with various libraries across the country and from abroad, she plans the activities of the library, she develops projects, and coordinates the research activity. Adriana has published articles addressing subjects such as the equal access of persons with disabilities to education, culture, and the labor market. “It is true that I have a visual disability, but I strongly believe that we must value abilities and, at least in my case, the lack of sight did not affect my judgment in any way. My professional path was not exactly easy. Of course, I was also faced with the reluctance, mistrust or fear of potential employers, but with patience, lots of ambition and hard work I can say that I am in a place that I barely dared to dream about a few years ago.” Ocupare 3 Employment IN SHORT What are the rights of persons with disabilities? All persons with disabilities who want work should be able to find employment. Disability, regardless of its type or degree of severity, should not be a barrier to employment. The government should provide various kinds of support to ensure that any person with disabilities who wants to work can do so. The state should help persons with disabilities to look for adequate employment, to secure employment, and to provide support to employers to improve their working conditions. They should provide employers with many types of support to encourage them to employ persons with disabilities. One such measure is to reimburse employers for the wages that they pay to employees with disabilities for a certain period of time after hiring them. They should also penalize any institutions or companies that fail to employ the number of employees with disabilities that is stipulated by the law. The jobs should be appropriate for the needs of persons with disabilities. The jobs should be adapted to enable persons with disabilities to fulfill their right to work. For example: Persons with disabilities should only be required to carry out activities that are consistent with their abilities. Persons with disabilities should be able to understand what is expected of them. Sometimes, employers must use sign language, speak in words that are easy to understand, or write messages in capital letters. Some persons with disabilities need: assistive equipment to perform their tasks, differently arranged work spaces, adapted working hours, and other job adaptations. Persons with disabilities who work must earn a high enough income to stay out of poverty. 109 Ocupare Persons with disabilities should have access to professional training. The government or government-approved organizations should offer persons with disabilities the opportunity to improve their skills to make them more employable whenever they might need it. What are the main employment problems in Romania? This analysis has shown that there are three main problems in Romania: 1 Limited access to employment Most persons with disabilities are not employed or do not participate in the labor market. 2 Low quality of employment Some persons with disabilities are employed in inadequate or poorly paid jobs. Limited access to professional training programs 3 Too few persons with disabilities can access training that would help them to become more employable. 110 Employment 3 Employment All persons with disabilities must be given the opportunity to use and develop their qualifications and skills as well as to fulfill their creative and productive potential by having access to a freely chosen job in a work environment that is inclusive, accessible, and adapted as appropriate and that provides a decent standard of living.234 Persons with disabilities must have adequate access to employment. The right to work is an integral part of the rights of persons with disabilities and should be universally attained. The job should be freely chosen and based on their preferences or on negotiations with the employers under conditions of equality of opportunity with persons without disabilities. Should the person with disabilities need it, assistance with employment must be provided at all stages, including training, seeking employment, the job application, the interview, and the activity in the workplace. Also, persons with disabilities should receive any other assistance with their employment as necessary, including through “specific measures that are necessary to accelerate or achieve the de facto equality of persons with disabilities”235 with persons without disabilities and that do not count as discrimination. The quality of employment for persons with disabilities must be high. Persons with disabilities should have work opportunities (through employment or self-employment) that reflect their professional training, skills, and their aspirations for their professional fulfillment and earned income. The workplace, whether at the employer’s headquarters or at the person’s home, should be accessible. Workplaces should be adapted to the abilities and needs of the persons with disabilities in terms of commuting to work, the layout of the workspace, the tools and technologies used, their work schedule, and the nature of the work. Moreover, the income earned should place the person with disabilities above the poverty threshold and should also cover the additional expenditures related to disability. Persons with disabilities must be given adequate training to improve their qualifications and to develop their skills and their creative and productive potential. Training and education for the labor market should increase the employability of persons with disabilities and should be accessible to both inactive and unemployed persons with disabilities as well as to employed persons who wish to change their employment or improve their performance in their current employment. This additional training should capitalize on the abilities and aptitudes of the persons with disabilities and should be appropriately adapted. The main problems preventing persons with disabilities from accessing quality employment are: 1. The limited access to employment for persons with disabilities. 2. The low quality of employment for persons with disabilities. 3. The limited access to professional training for persons with disabilities. 234 The vision in this chapter is derived from the provisions of Art. 27 and Art. 2, Art. 4, let. a) and b), Art. 5 para. (3) of the CRPD. It is also derived from several provisions of the Charter of Fundamental Rights of the European Union as follows: Art. 26 on the integration of persons with disabilities, Art. 21 on introducing a general prohibition of discrimination (explicitly mentioning disability as one of the reasons for discrimination), Art. 15 on the protection of the freedom to choose an occupation and the right to employment, Art. 27 on the right of the worker to information, Art. 28 the right to collective bargaining, Art. 29 on the right to access placement services, Art. 30 on the right to protection in case of unjustified dismissal, and Art. 31 the right to fair and favorable working conditions. 235 Schulze (2010). 111 Employment 3.1 3.1 Limited access Limited to employment access to employment IN SHORT What are the rights of persons with disabilities? All persons with disabilities have the right to work and to access employment. Persons with disabilities should be able to work both to cover their living costs and to feel fulfilled and respected. The labor of persons with disabilities is important for themselves, as well as for their employers, the communities in which they live, and Romania as a whole. What is the situation in Romania? 74% 51% Percentage of persons of working age 12 % who are employed Without With some With severe disabilities disabilities disabilities Persons with disabilities in Romania have a much lower employment rate than persons without disabilities. Of all persons with disabilities in Romania, those living in rural areas, those with the lowest educational levels, and the young have the lowest employment rates. Romania has the lowest employment rate of persons with severe disabilities among all EU countries. What are the causes of this problem? Thousands of persons with disabilities are denied their right to work under the law. 112 Employment Companies with over 50 employees have a legal obligation to employ a minimum number of persons with disabilities (a 4 percent quota of all employees). If they do not do so, they must pay a penalty. Most employers choose to pay the penalties. The Romanian government itself does not comply with its obligation as employer: not a single ministry employs the number of persons with disabilities that is stipulated by the law. The public institution responsible for assisting job seekers with disabilities is the National Employment Agency (NEA). However, in 2019, it provided supported employment services to only 368 persons with disabilities. None of its county-level branches are equipped to assist all types of persons with disabilities. Persons with disabilities often face discrimination when they apply for a job. Some persons with disabilities who get a job are treated unfairly by their employers. There are special workplaces that offer working conditions Job Description tailored to the needs of persons with disabilities (known as “sheltered employment”), but few employers offer such workplaces, and those that do exist do not receive enough government support. What are the key changes that need to be made? No person with disabilities should have their right to work taken away or limited under the law. All public institutions should publish annual data on the number of persons of disabilities whom they employ. The NEA should help a larger number of persons with disabilities to get employed and take in consideration the needs of each person. The government should conduct publicity campaigns to convince society and employers that persons with disabilities can work and that they must be supported to find employment. Employers who provide special working conditions for persons with disabilities should receive more government support. 113 Employment 3.1 Limited access to employment The right to work is central to the CRPD. “States parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labor market and work environment that is open, inclusive and accessible to persons with disabilities.”236 Persons with disabilities can be factory workers, civil servants, shop assistants, inventors, doctors, packers, researchers, artists, farmers, or professional athletes. An inclusive workforce has multiple benefits: For individuals, employment can lead to increased personal autonomy, a better standard of living, and a lower risk of being reliant on social benefits. To be jobless is to lack a steady income, resulting in a poorer standard of living and being unable to cover the various costs related to disability (such as medication, therapies, assistive technology, and home care), thus, threatening the person’s health and ability to function. Furthermore, unemployed individuals are deprived of the status that comes with the social validation bestowed on the employed, the feeling of being valuable and useful, and the opportunity for personal and professional fulfilment.237 Without a job, the probability of developing a social network and being independent drops sharply, and unemployed persons with disabilities are deprived of the resources needed to escape the trap of poverty and social exclusion. For employers, employing persons with disabilities can help to build a diverse workforce, which reflects the diversity of their clients and of the communities in which their businesses operate, as well as attracting additional skills in their companies. Persons with disabilities are often more likely to hold onto their jobs and less likely to miss work than persons without disabilities.238 For society, the employment of persons with disabilities can help to build a diverse workforce, leading to an increase in GDP, and reduced expenditures on unemployment benefits and some social protection benefits. Description of the problem The employment rate239 for persons with disabilities in Romania is not only much lower than that for persons without disabilities but is also well below the EU average. While 74 percent of persons without disabilities aged 20 to 64 are employed in Romania, only 51 percent of persons with some disabilities are employed, and the rate drops sharply for persons with severe disabilities (only 12 percent of whom are employed) (Figure 11). While the employment rate for persons with some disabilities rose between 2010 and 2018, it remained largely unchanged for persons with severe disabilities (see Annex-Table 14). Romania has the lowest employment rate for persons with severe disabilities in the EU, with some countries having rates as much as three times higher than the Romanian rate.240 236 WHO and World Bank (2012). 237 Employed people report much less frequently that they feel left out of society than the long-term unemployed or the people who are not able to work because of disability, according to Eurofound (2018). 238 The qualitative research carried out for this report included interviews with employers. 239 The employment rate is defined as the share of the population aged 20 to 64 who were employed in a goods- or services- producing economic or social activity for at least one hour during the reference period (a week). 240 This large gap between persons with severe disabilities in Romania and in other EU countries is notable given that the employment rates for persons without disabilities in Romania and in the rest of the EU are similar. 114 Employment FIGURE 11 Employment rate, by degree of disabilities, for EU countries, 2018 (percent) Romania 12 51 74 Croatia 17 39 68 Bulgaria 18 39 75 Lithuania 19 54 80 Belgium 20 54 76 Poland 22 46 75 Finland 23 61 73 Greece 23 36 61 Hungary 23 56 79 Spain 24 46 70 Italy 26 57 67 Netherlands 27 64 83 Austria 29 64 78 Ireland 29 40 78 Latvia 29 67 80 Cyprus 30 58 75 Czech Republic 31 59 80 Slovakia 31 63 80 Malta 34 45 75 Sweden 35 58 80 Slovenia 36 58 77 Denmark 37 59 79 France 40 64 75 Luxembourg 40 56 70 Portugal 42 62 78 Estonia 43 71 85 Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: Calculations made by the World Bank using EU-SILC 2018 data for EU countries excluding Germany. 115 Employment Persons with disabilities who live in rural areas, who have a low level of education, and who are aged between 20 and 34 years old are at higher risk of unemployment. Young persons with severe disabilities have the lowest rate of employment (7 percent) (Annex-Table 15). The situation of unemployed young persons is exacerbated because they benefit the least from pension coverage (including disability pension), which makes them more vulnerable to social exclusion.241 Women with disabilities have a lower employment rate than men. Similar to women without disabilities, 20 percent of them perform work at home or have care responsibilities242 (Annex-Table 17). In general, people with a higher level of education have a higher employment rate, but the difference in employment between those with severe disabilities and those without disabilities with the same level of education is significant (over 50 percent). Persons with disabilities living in municipalities have a slightly higher employment rate than persons residing in towns and rural areas, but this difference is about the same as for persons without disabilities, which means that persons with disabilities are not in fact offered substantially more opportunities in municipalities. Most persons with disabilities in unemployment aged between 20 and 64 are economically inactive.243 Thus, 86 percent of persons with severe disabilities and 48 percent of those with some disabilities were economically inactive in 2018, compared to only 25 percent of those without disabilities. Within the group of persons with severe disabilities, who have the highest percentage of persons out of the labor market, there are certain sub-groups affected by multiple factors that exclude them from the labor market. The values for the youngest and oldest age groups are concerning, with 88 percent of people aged 20 to 34 and 92 percent of those aged 50 to 64 being economically inactive. Furthermore, 90 percent of persons with severe disabilities living in rural areas and 90 percent of those with severe disabilities who did not have a primary school education are also inactive. Romania’s position in the EU-27* as ranked by the inactivity rate indicator, by FIGURE 12 disabilities, population aged 20-64 25% The highest rate alongside Luxemburg 10 - Estonia % 48% The fourth highest rate 22 - Estonia % 86% Highest rate, higher than Bulgaria’s: 78 percent 44% - France, Portugal, Slovenia Persons Persons with some Persons with Country with the best level without disabilities disabilities severe disabilities Source: Calculations made by the World Bank using EU-SILC 2018 data for EU countries excluding Germany. Note: * Excluding Germany because of a lack of data. Economically active persons with severe disabilities are also at a higher risk of being unemployed than persons without disabilities. The 2018 rate of unemployment as calculated in accordance with definition of the International Labor Organization 241 Among persons with disabilities aged 20 to 34, 43 percent were in a situation of vulnerability as unemployed, disability pensioners, or students, while only 22 percent of those aged 35 to 49 and only 13 percent of those aged 50 to 64 were in the same situation (Annex-Table 16). 242 The percentage of men with and without disabilities performing this type of work is 0 (or close to 0) (Annex-Table 17). 243 Persons who are neither employed nor unemployed. 116 Employment (ILO)244 was 10 percent245 for persons with severe disabilities aged between 20 and 64 compared to only 1 percent for persons without disabilities. This gap shows that jobseekers with disabilities do not have the same opportunities to find a job as jobseekers without disabilities. Explanation of the problem From 2016 to 2020, several strategies addressing the employment of persons with disabilities were created, but their outcomes were modest. The NSPD 2016-2020 contained several objectives related to ensuring an open, inclusive, and accessible work environment and to promoting the valuable contributions that persons with disabilities can make to their communities as employees. Nonetheless, out of the 24 measures in the NSPD 2016-2020, only one was self-reported246 by the responsible institutions to have been fulfilled, 19 were considered to be undergoing implementation, and three were not being implemented at all (there was no information about one of the measures). The National Strategy for Employment 2015-2020 mentioned persons with disabilities several times but without any further arguments or explanations and failed to set any specific objectives for this vulnerable group. There are many barriers in society that hinder the access of persons with disabilities to employment. Specifically, according to the qualitative research, these barriers include: (i) the low level of inclusiveness of the educational system; (ii) a lack of suitable and accessible jobs; (iii) employment services that do not cater sufficiently to the needs of persons with disabilities; (iv) social benefits that do not incentivize the activation of persons with disabilities; (v) the healthcare system that focuses on treating illnesses instead of helping persons with disabilities to live an active life, including by increasing the availability and effectiveness of assistive technology devices; and (vi) non-supportive or overprotective families who do not enroll their children in school or who take them out of school to avoid systemic barriers and stigma. The following key elements must be ensured for leading to the widespread access of persons with disabilities to employment: 1. Respecting the right to work. 2. Effective tools to stimulate employment for persons with disabilities. 3. Efficient supported employment services tailored to the needs of persons with disabilities that cover a high percentage of this group. 4. The raising of awareness among working-age persons with disabilities and among employers of the need to support their entry into the labor market. 5. The development of inclusive sheltered employment. Respecting the right to work Persons placed under guardianship are denied their right to work.247 Although all 244 According to the ILO definition, a person who is unemployed is a person aged 15 to 74 who simultaneously meets the following three conditions: (i) does not have work; (ii) is available to take up employment in the next two weeks; and (iii) has carried out activities to seek employment any time during the past four weeks. The ILO rate of unemployment is calculated as the share of unemployed persons in the economically active population. 245 The number of unemployed persons with severe disabilities in the sample is low, between 20 and 50. 246 This is measure 1.8: “To develop support measures (regardless of their nature: fiscal, economic, know how etc.) targeting employers to enable them to provide persons with disabilities with assistive technologies adapted to the workplace/to make the workplace accessible/to adapt the machinery/technological lines to the needs of persons with disabilities” (World Bank, 2019). 247 Which contradicts Art. 12 of the CRPD. 117 Employment persons with disabilities who are able and willing to work have the right to work, in Romania at least 17,570 are placed under guardianship,248 which means that they are deemed “not to have the capacity to take care of their own interests, because of alienation or mental debility.”249 About half of these persons are of working age.250 The legislation explicitly bans these persons from formal employment in two ways: (i) any legal documents signed by the person who is under guardianship are considered “relatively null”251 even if, at the time of their signing, the person had the capacity to do so252 and (ii) the Labor Code stipulates under Art. 13 para. (4), that employing these persons is forbidden.253 Beneficiaries of disability pensions find it difficult to effectively exercise their right to work.254 Persons who have retired for reasons related to work accidents and/ or illness, who receive a disability pensions cannot easily make the transition between the status of inactive person on the labor market (disability pensioner) to the one of active person (employee). The former lose the right to perform any paid work, while the latter only do part-time paid work so have the right to receive both wage and pension payments. If disability pensioners do find employment, those deemed to have lost full capacity can give up the right to receive a pension, but there are several disincentives that stop them from (re)entering the workforce, including job insecurity, the costs associated with being employed, the bureaucracy that makes re(applying) for a disability pension very difficult, and the uncertain outcome of the reapplication. Another option might be to have the pension payments temporarily discontinued on the person’s request, but due to different interpretations of the law, only some local pension authorities accept the temporary discontinuing of payments while others require the recipient to give up the right to receive payments once employed.255 The new Pension Law no. 127/2019 explicitly states that “for any degree of work disability (...), depending on the nature of the work capacity limitation and the type of employment, work capacity may be maintained for certain professional activities.”256 The problem with exercising the right to work therefore does not lie with the legislation but with the different ways in which it is applied. Effective tools to stimulate employment for persons with disabilities Persons with disabilities have the right to opportunities for employment and career advancement. The CRPD explicitly requires State parties to take measures to provide opportunities for employment and career advancement to persons with disabilities, with an emphasis on giving them experience in the competitive labor market. Also, the CRPD stipulates the right of persons with disabilities to be employed in the public and private sectors through the provision of adequate policies and measures such as positive action programs and incentives. In addition, a special provision stipulates 248 World Bank estimations based on data provided by Guardianship Authority Services between July-August 2020 at the request of NARPDCA. 249 Law no. 287/2009 on the Civil Code, Art. 164. 250 According to the data collected by the NARPDCA and the World Bank in July-August 2020, 53 percent of persons under guardianship in 2019 were aged 18 to 64 (21 percent were aged 18 to 34, 19 percent were aged 35 to 49, and 14 percent aged 50 to 64). 251 Relative nullity penalizes making a civil juridical act in breach of a legal rule intended to protect an individual (private) right, namely a private imperative legal rule, which institutes a condition of validity for making a juridical act (Law no. 287/2009 on the Civil Code, Art. 1248 para. (1)). 252 Law no. 287/2009 on the Civil Code, Art. 172. 253 Law no. 53/2003 of the Labor Code, Art. 13 para. (4). 254 Disability pensions are granted to persons who do not meet the age requirement for retirement and have made contributions to the pension scheme but have lost the capacity to work either fully (I and II degree pensions) or partially (III degree pension). 255 According to the qualitative research undertaken as part of the documentation for this report. 256 Law no. 127/2019, Art. 64 para. (2). 118 Employment public employers’ obligation to recruit persons with disabilities.257 In Romania there is a quota system to incentivize employers to hire persons with disabilities, but its efficiency was not assessed. Employers “with at least 50 employees have the obligation to employ a share of at least 4 percent of persons with disabilities out of the total number of employees.” If employers fail to fulfill this obligation, they have to pay a monthly penalty in the amount of one national gross minimum wage for each job reserved for and not actually assigned to a person with disabilities or half of that amount if the remaining amount is used to purchase products or services generated by persons with disabilities employed in authorized sheltered facilities.258 In the years before the law was amended in 2020, the option to purchase products from authorized sheltered facilities was temporarily phased out, in order to increase the focus on employing persons with disabilities. However, there was no evidence that the employment incentive function was performed effectively, given that a significant competitive advantage of the authorized sheltered facilities disappeared, leading to most of them being closed. The Romanian Government has to considerably improve its performance as an employer of persons with disabilities. According to the legislation, public institutions and other public legal entities have the obligation to organize job competitions dedicated to recruiting only persons with disabilities.259 However, many of them fail to employ even the minimum percentage established under the quota system, preferring to pay the corresponding penalties. An analysis of penalties paid by public ministries in 2019 indicates that not a single ministry has complied with the 4 percent quota (Annex-Table 18). While the GDSACPs have to support the inclusion of persons with disabilities,260 they are another example of institutions that, to varying extents, prefer to pay penalties for not recruiting persons with disabilities (Figure 13). The funds collected from penalties are not adequately used to increase employment of persons with disabilities. Various European countries that have a quota system use the collected penalties to finance employment policies, such as supported employment services, subsidies to employers for employing persons with disabilities or adapting the workplace, or the development of social economy enterprises.261 In Romania, according to Law no. 500/2002 on public finances that is regulating the state budget, budget revenues cannot be allocated to specific budget expenditures. Between July 2017 and June 2018, the amount collected from these penalty payments was approximately 1,492 million RON. 257 CRPD, Art. 27 let. g). 258 Law no. 448/2006 and subsequent amendments, Art. 78, paras. (6) and (7). 259 Law no. 448/2006, Art. 78 para. (6). 260 Law no. 292/2011 on social assistance. 261 These countries include Austria, France, Germany, Italy, South Korea, Poland, Spain, and Turkey (OECD, 2003). 119 Employment FIGURE 13 Number of disability certificate holders employed by GDSACPs and the number of jobs for which the GDSACPs paid penalties for failing to meet the employment quota for persons with disabilities, 2019 Vaslui* 60 Bacău 52 21 Timiș 46 19 Dolj 45 16 Bucharest Sector 2 43 33 Constanța 38 29 Bucharest Sector 4 36 27 Suceava 32 32 Cluj 31 19 Iași 31 60 Olt 31 26 Neamț 30 13 Bucharest Sector 3 30 39 Bucharest Sector 5 29 26 Mureș 27 37 Galați 27 12 Tulcea 25 15 Maramureș 25 12 Bihor 25 21 Satu Mare 21 18 Alba 20 11 Călărași 20 12 Prahova 20 50 Botoșani 19 24 Sibiu 18 26 Dâmbovița 17 12 Gorj 16 25 Covasna 15 5 Harghita 15 18 Ialomița* 14 Iflov 14 5 Arad 14 14 Brașov 13 22 Teleorman 13 14 Buzău 12 31 Hunedoara 12 20 Giurgiu 12 24 Argeș 11 47 Vrancea 8 39 Vâlcea 6 42 Brăila 6 15 Bistrița-Năsăud 5 19 Caraș-Severin 5 28 Bucharest Sector 1 103 Bucharest Sector 6 43 Mehedinți 76 Sălaj 28 Number of jobs for which Number of employees penalties were paid with a disability certificate 120 Employment Source: Calculations made by the World Bank based on the 2019 Budget Execution Reports available on the website of the Ministry of Finance and data on the number of GDSACP employees in December 2019. Notes: The number of jobs for which penalties were paid is calculated as the ratio between the amounts paid for persons with disabilities not employed in 2019 and the gross minimum wage (RON 2,080 in 2019) multiplied by 12 months. The number of persons holding a disability certificate is calculated as the difference between 4 percent multiplied by the December number of employed persons and the number of jobs for which penalties were paid. * For those counties marked with an asterisk (*), there is no information on the number of employed persons. In Romania, the existing subsidies program for employers is not sufficiently attractive. Employers are eligible to receive subsidies for 12 months if they employ persons with disabilities on an indeterminate basis and for 18 months if they employ graduates with disabilities and retain them as employees for 18 months.262 In 2019, only 171 employers applied for the subsidies.263 The reasons for this are twofold: first, many employers are not aware that the subsidies and, second, those who do know about them do not consider them financially attractive. Some of the interviewed employers emphasized that the subsidies do not even cover the costs associated with employing a person with disabilities (such as an increased bureaucratic burden, the possible costs of adapting the workplace, and the expectation that employees with disabilities will have lower productivity than employees without disabilities).264 Efficient supported employment services tailored to the needs of persons with disabilities that cover a high percentage of this group Some of the most effective measures to increase employment of persons with disabilities are supported employment services tailored to their needs. The CRPD Committee frequently recommends designing a coherent and effective system of policies to facilitate the employment of persons with disabilities. The World Report on Disability argues for the provision of vocational rehabilitation and employment services, training, counselling, support to find a job, and selective placement in the labor market.265 The report distinguishes between supported employment, vocational rehabilitation and vocational training on the one hand as services dedicated exclusively to persons with disabilities (discussed in subchapter 3.3), and public employment services on the other hand, as services provided to the whole population. “It is important that employment services work simultaneously with both sides: preparing persons with disabilities for work at the same time as making employers and employment conditions more inclusive.”266 The number of unemployed persons holding a disability certificate registered with the local public employment agencies is very low. In 2019, only 368 disability certificate holders were registered with the county offices of the National Employment Agency (NEA), with most counties registering fewer than 10 unemployed persons with disabilities (12 CEAs registering two or less).267 Disability certificate holders as a proportion of the total number of unemployed persons was 0.28 percent in 2019.268 The actual number of beneficiaries could be higher since some persons might exercise their right not to declare that they hold a disability certificate because of the perceived risk of discrimination and the fact that it does not come with substantial benefits. In 262 Law no. 76/2002, Art. 80 para. (2) and Art. 85 para. (2). 263 National Agency for Employment (NEA) report provided to the NARPDCA on request. 264 It was employers with a limited experience in employing persons with disabilities that put an emphasis on the costs of recruiting persons with disabilities, whereas more inclusive employers emphasized the advantages. 265 WHO and World Bank (2012). 266 ILO (2020). 267 Data from the NEA. 268 The total number of registered persons in unemployment at the end of 2019 was 257,865. 121 Employment any case, overall, the number of jobseekers with and without disabilities who use the employment services is still too low – less than 30 percent of the total population in unemployment in 2020.269 BOX 21 Difficulties generated by the limited access to employment for persons with disabilities “They want to work, but they benefit from pensions for total or partial incapacity. And so we cannot help them.” (SAD representative, Cluj county) “We went to job fairs a few times but, to tell you the truth, we were left with a bitter taste. If we talk to employers and say that we are coming to provide work assistance, that we sit next to that person and explain the tasks in the beginning... No, they refuse, because the person is disabled.” (NGO representative, Olt county) “I think that, until now, there was not so much emphasis on hiring persons with disabilities and at the same time providing assistive technology to them. If such a person managed to adapt to the existing work environment, with minimal changes, it was OK, if not, it was not OK.” (CAE representative) “A relative of mine asked my father why he sent me to school considering that I was blind. More distant acquaintances [ask me]: ‘Why do you work when you could stay at home and receive a disability allowance?’” (Employed person with disabilities, Maramureș county) “I can adapt to anything, but I have these problems with my blood pressure and I cannot do physical work. [I would like] to find a job, anything, as a salesperson, cleaning staff. It does not matter that I have a high school diploma, I would accept anything, as long as I do not stay at home. I want to find a job, to be someone. I have a place to stay, I do not want a particular salary, it does not have to be a big salary, just to have something to put on the table. [...] I cannot be picky about it.” (Unemployed person with disabilities, Olt county) “I do not have the money to start a business, people with hearing disabilities are not rich. As a person with disabilities, with an income of 704 RON and 375 RON, how could I ever start a business? Even if I had the money, I would not have the courage for this. I would be afraid of the bureaucracy, of missing out information, and of making mistakes. I need someone to explain everything to me and I need to trust the person doing this.” (Employed person with disabilities, Olt county) Source: World Bank qualitative research (February-May 2020). In Romania, the number of persons with disabilities that benefit from labor market activation measures for the general population is very low. At the same time, the employment target for persons with disabilities set by the NEA, even though not reached yet, is also low and declining. The main labor market activation measures that are used to increase the employment rate in general are: (i) vocational information and occupational counselling; (ii) mediation in labor relations; and (iii) occupational training. From 2015 to 2019, the number of disability certificate holders who received activation services dropped by half to only 1,013 (0.17 percent of the total number of beneficiaries).270 According to the NEA’s Annual Employment Program, the employment target for persons with disabilities in 2019 was 760 persons (only 0.14 percent of the target for the total population), a sharp decrease compared to 2015. In 2019, only half of this target was reached. 269 European Commission (2020b). 270 In 2019, the total number of beneficiaries of activation measures to stimulate employment was 568,534. 122 Employment FIGURE 14 Indicators of activation services and the employment target for persons with disabilities (number) 69 1,767 1,720 1,385 39 658 48 33 916 516 727 760 33 502 458 864 791 28% 33% 641 714 490 36% 49% 49% 460 459 334 353 370 2015 2016 2017 2018 2019 2015 2016 2017 2018 2019 2,296 745 872 876 1,013 Services of vocational information and Number of employed persons with disabilities occupational counselling Services of mediation in labor relations Employment target for persons with disabilities in the Annual Employment Program Occupational training programs Source: NEA. The results of an inspection campaign run by NAPSI from March to August 2020 show that county employment agencies (CEAs) and local employment agencies (LEAs) have poor physical, information, and communications accessibility (Figure 15). In fact, none of the 49 audited CEAs that responded met the full requirements of physical accessibility, and none of the 49 services provided accessible information Physical accessibility 86% 14% and communications. For example, With adapted, reserved, signaled parking, in terms of basic facilities, 48 services did not 78% 22% have accessible toilets, 40 services did not provide physical access to persons with or without parking space disabilities their to path With accessible to buildings, wheelchair and 31 did not have a 18 enter the building % ramp even though 82% it needed. isWith 49 services, Ofaccess accessible 47 did not provide accessible information, and 39 did not ramp or with provide accessible no need for a ramp communications. The lack of accessibility 37% in these offices means 63% With persons that with mobility accessible entrance impairments or with certain to the building 20% sensory impairments 80% are unable to use the existing employment services. This is compounded by the fact that With the accessible hallways occupational counselors in the employment services are too overloaded with 94% work 6% to perform With any accessible fieldwork, interior doors even though their job description requires it (according to 76% 24% interviews with officials of the CEAs). With accessible reception counter/office or no counter withdegree 18% 82% The of physical accessibility and of accessibility of information and FIGURE 15 With accessible elevator/lifting platform/sidewalks communication of 50 County or escalators or with no need for them and Local Employment Agencies, 41% 2020 45% 14% Physical With accessibility accessible bathrooms 86% 14% 2% 98 % With adapted, reserved, signaled parking, Accessibility of information or without parking space and communication 78% 22% 100 % With With accessible path accessibility to enter the building of information 4% 18% 82 96% % With accessible access ramp or with With accessibility no need for a ramp of communications 20% 37% 63% 80 % With With accessible the building entrance to and physical accessibility accessibility 20% 86% 80 14% % of information and communication With accessible hallways 94% 6% Yes No Non-response With accessible interior doors 76% 24% With accessible reception counter/office or with no counter 18% 82% 123 With accessible elevator/lifting platform/sidewalks 41% 45% 14% or escalators or with no need for them With accessible bathrooms 2% 98% With adapted, reserved, signaled parking, or without parking space 78% 22% With accessible path to enter the building 18% 82% With accessible access ramp or with no need for a ramp 37% 63% Employment With accessible entrance to the building 20% 80% With accessible hallways 94% 6% With accessible interior doors 76% 24% With accessible reception counter/office or with no counter 18% 82% With accessible elevator/lifting platform/sidewalks 41% 45% 14% or escalators or with no need for them With accessible bathrooms 2% 98% Accessibility of information and communication 100% With accessibility of information 4% 96% With accessibility of communications 20% 80% With physical accessibility and accessibility 86% 14% of information and communication Yes No Non-response Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020. There is a need to improve public employment services as well as to increase and diversify the providers of employment services. Romanian employment services do not currently meet the specific requirements of assistance and support for persons with disabilities because of the low number of specialized trained staff (as evidenced by the interviews with employment services officials) and insufficient financial resources allocated for this purpose.271 Local public employment services do not have staff specifically trained to work with persons with disabilities who could serve the small number of existing beneficiaries, not to mention a higher number of applicants that are expected in the future. International experience272 shows that outsourcing employment services to private providers (under clearly defined and controlled conditions) can be a good solution to cut expenses and to increase the efficiency of the services.273 According to Romanian legislation, CEAs can outsource specialized services in the area of activation to accredited private providers, but there are no provisions on outsourcing services dedicated to persons with disabilities or on minimum cost or quality requirements. Employment services are also deficient in terms of their integration with other public services. There is no referral system from the social assistance system to make a person’s history of identified needs and received benefits and services accessible to employment counselors. Also, there is no systematic collaboration between employment services and the education sector. This lack of service integration has been mentioned in official documents. “The planned reform of the public employment service has been significantly delayed. The public employment service has a very limited case management approach. The lack of integration of employment, social, and education services and the ineffective cooperation with employers remain important 271 In 2017, Romania spent 13 PPPs per capita (PPP is a rate of currency conversion that takes into account differences in purchasing power to make it possible to make comparisons between countries) compared to an EU 27 average of 398 PPPs per capita. Unemployment costs were 0.1 percent of GDP and 0.4 percent of government public expenditures compared with EU-27 averages of 1.3 percent and 4.9 percent (according to Eurostat indicator prc_ppp_ind, http://appsso.eurostat.ec.europa.eu/ nui/show.do?dataset=prc_ppp_ind&lang=en). 272 OECD (2010). 273 “Outsourcing these services is most efficient in the case of hard to place clients, and that partially outcome-based financing can be effective” (European Commission, 2013). 124 Employment barriers” to the reform.274 This is a critical problem even though the European funds were targeted through the Human Capital Operational Program (HCOP) 2014-2020 to achieving employment outcomes: “Public employment services are not effectively tailored to individual needs and lack integration with social services, despite substantial funding being available.”275 The raising of awareness among working-age persons with disabilities and among employers of the need to support their entry into the labor market There are a number of factors that demotivate persons with disabilities to look for employment. Often, persons with disabilities lack the motivation to enter an uncertain career path and to give up being a social benefits recipient. Available evidence shows that self-assessments of unemployability are one of the main reasons behind the lack of employment among persons with disabilities.276 According to the qualitative research carried out within this project, two important factors influence how persons with disabilities self-assess their employability: (i) the perception that they have about their right to work, which is not uniform, with some respondents emphasizing that no preferential measures should be taken for their particular vulnerable group277 and (ii) their understanding of their own ability to work, which is influenced by the level of support displayed by the persons without disabilities around them. When the negative perception of persons with disabilities about the labor market and their own capacities is reinforced by passive social protection and employment services, there is a substantial likelihood that they will stay out of the labor market. Some employers are not willing to recruit persons with disabilities because of their stereotypes. One of the arguments that they frequently offer is that it is impossible to find persons with the skills and competence required for the available jobs. The qualitative research has also shown that employers have a negative perception of the capacity of persons with disabilities to work, the likely unprofitability of employing them, the potential difficulties caused by mental health issues, and the special training and adaptations that might be required in the workplace to accommodate them. Such perceptions are not present only among the employers but also among family members and even among persons with disabilities themselves, who internalize the discriminatory attitudes that exist in the entrepreneurial environment and in society as a whole. Previous campaigns to raise awareness of the right of persons with disabilities to work were not guided by any diagnostic studies or systematic impact assessments. Many past awareness raising campaigns failed to define their target group correctly, used general messages that were not tailored to their target group, and were disseminated through the mass media instead of using direct contact advocacy, for example, by engaging employers in consultations or work groups to help to create and implement policies. The impact of awareness campaigns has rarely been assessed, and most often only by using coverage indicators. 274 European Commission (2019: 34). 275 European Commission (2020a: 33-34). 276 Romanian Academic Society (2009). 277 The qualitative research has shown that persons with disabilities are not always aware of their right to work and of the ways to exercise it. 125 Employment The development of inclusive sheltered employment Sheltered employment is designed to provide temporary jobs to persons with low employability, including those with disabilities.278 These forms of sheltered work provide training and support for the transition to the free labor market. In Europe, social enterprises focused on encouraging labor market participation among vulnerable groups employ an estimated 3 million persons with disabilities.279 In those countries that implement inclusive forms of sheltered employment,280 they provide support aimed at increasing the employability of persons with disabilities. Sheltered employment is defined and approached differently from country to country. Sheltered employment programs in Norway BOX 22 In Norway, persons with reduced work capacity apply to the Public Employment Service, which evaluates their employment needs. Depending on their support needs, they are enrolled in one of two types of programs: (i) Work Preparation Training Scheme, which trains and prepare for employment persons who require long-term support or (ii) the Permanently Adapted Work Scheme, which offers work that is permanently adapted to persons who need permanent support. Both schemes are implemented by work inclusion enterprises and non-profit organizations that are majority-owned by the municipal administration, whose purpose is to integrate persons with reduced work capacity (including but not limited to persons with disabilities) into the labor market. The Work Preparation Training Scheme involves: (i) evaluating the beneficiaries’ resources and vocational goals; (ii) reviewing their work skills in a sheltered and adapted environment; (iii) enrolling them in certified training programs; and (iv) carrying out work duties and training in an unsheltered workplace. The beneficiaries do not have employee status and do not receive a salary, but they do receive social benefits from the Public Employment Service. The work inclusion enterprises receive subsidies for participating in the program. From January to September 2018, 350 enterprises offered this type of service to 7,423 persons. An analysis of this scheme carried out by an association of work inclusion enterprises showed that 26.6 percent of the participants employed by the 115 member enterprises throughout the same period made the transition to the competitive labor market, while 9.4 percent continued their education. The Permanently Adapted Work Scheme provides a sheltered environment where persons with disabilities can perform individually adapted tasks and receive assistance with their work. The purpose is to train them to be competitive on the labor market or to enter training programs. The participants have employee status and receive all of their legal rights in accordance with that status. The pay is in the form of an indemnity, to which an amount paid by the employer can be added. Similarly to the other scheme, the work inclusion enterprises receive public funding to implement the program. During the first nine months of 2018, 8,521 persons with reduced work capacity were employed by 350 participating work inclusion enterprises. During this time, approximately 11.5 percent made the transition to the competitive labor market, and 3.7 percent went on to education programs (according to the same analysis). Source: EASPD (2018). There is need to enhance the forms of sheltered employment provided in Romania. The authorized sheltered facilities and social enterprises that are targeted specifically to persons with disabilities currently employ approximately 130 persons, having taken them on in a period when there was no consistent public support before the recent legislative amendments in 2020. The persons interviewed in the qualitative 278 While this issue is related to problems discussed in subchapters 3.1. and 3.2. (in that it is relevant for both the amount of employment among persons with disabilities and the work conditions offered to them), to simplify things, we will deal with this problem under subchapter 3.1. 279 EASPD (2013). 280 France, the Netherlands, and Poland are examples of countries that promote the transitional model of social economy where workers in sheltered employment are trained to transition into the competitive labor market (European Parliament, Directorate- General for Internal Policies of the Union, 2015). 126 Employment research put forward two main arguments for consolidating the different forms of sheltered employment: (i) a substantial proportion of persons with disabilities are not ready to enter the competitive labor market, and therefore sheltered employment would provide them with an intermediate opportunity as well as a training option and (ii) some persons with disabilities, especially those with severe disabilities and with intellectual and mental disabilities, can rarely be integrated into the regular Romanian competitive labor market, given its inaccessibility and lack of an inclusive culture. There are two main types of sheltered employment in Romania – authorized sheltered facilities and work inclusion social enterprises (Table 1). Authorized sheltered facilities281 (ASF) are public or private independently managed entities that employ at least three persons with a disability certificate who constitute at least 30 percent of the total number of employees, while, taken together, their working hours amount to a minimum of 50 percent of the total working hours of all the employees.282 The ASFs are authorized and methodologically coordinated by the NARPDCA. The 2020 NARPDCA lists included 36 ASFs, but in August 2020, only 24 of them could be contacted to participate to a survey and were functional. Work inclusion social enterprises283 (WISE) are social enterprises284 that employ vulnerable individuals, including persons with disabilities, who constitute a minimum of 30 percent of the staff while their accumulated working hours amount to a minimum of 30 percent of the total working hours of all employees. Additionally, these enterprises must meet the requirement to prevent exclusion, discrimination, and unemployment by ensuring the social inclusion and labor market integration of disadvantaged persons. WISEs are methodologically coordinated by the NEA. In August 2020, 69 social enterprises out of the 135 registered with the Sole Register of Social Enterprises (SRSE) responded to the survey, but only 14 of them were WISEs. In principle, ASFs can also be WISEs, but in practice, by August 2020 not a single ASF was registered with the SRSE. Authorized sheltered facilities and work inclusion social enterprises TABLE 1 Number Authorized sheltered facilities Number of entities in 2016 759 Number of persons with disabilities employed in 2016 2015 Official number of entities in 2020 36 Number of entities that could be reached and still operate in 2020 24 Number of persons with disabilities employed in December 2019* 121 Share of persons with disabilities employed in December 2019* 54% Number of jobs for persons with disabilities in December 2019* 85 Share of jobs for persons with disabilities in December 2019* 50% 281 Authorized sheltered facilities are defined under Law no. 488/2006 on the protection and promotion of the rights of persons with disabilities, republished, with subsequent changes and completions. 282 Under Law no. 145/2020. Previously, the only requirement was that 30 percent of the workers should be persons with disabilities. The current definition also includes “any legal form of organization in which an individual holder of a disability certificate has chosen to perform an economic activity.” 283 Work inclusion social enterprises are defined under Law no. 219/2015 on the social economy. 284 A social enterprise is any legal entity under private law that carries out activities in the area of the social economy, holds a certificate for this purpose, and meets a number of requirements prioritizing social purposes over profit. Social enterprises can be: cooperative companies, credit cooperatives, associations and foundations, mutual help associations for employees or retirees, farming companies, federations and unions of such entities, and other legal entities that comply with the definition and requirements of social economy. The definitions are available in Annex 5 of Law no. 219/2015 on social economy. 127 Employment Number Work inclusion social enterprises Official number of entities in March 2020 16 Number of entities that could be reached and still operate in 2020 14 Number of persons with disabilities employed in 2019* 11** Total number of persons in employment in December 2019* 43 Number of jobs for persons with disabilities in December 2019* 10** Total number of jobs in December 2019* 37 Source: For the 2015/2016 data on ASFs, Center for Nonprofit Legislation (2019). For the 2019 data, World Bank survey in August 2020 covering all ASFs and WISEs that we were able to reach.285 Notes: * For entities not operating in 2019, the data were collected for July 2020. ** Overall, the work inclusion social enterprises employed 45 persons with disabilities, corresponding to 34.5 jobs. This is explained by the fact that 34 persons with disabilities were employed by three foundations that did not have WISE status (they have no social license as they only operate as social enterprises). Forms of sheltered employment should prevent segregation and discrimination and promote quality job opportunities. The CRPD Committee has called on State 285 parties to clarify whether employment in their sheltered entities has led to segregation and discrimination.286 According to the CRPD, the right of all persons with disabilities to access opportunities to earn an income of their own free choice and will is not fully realized when the only option available to them is to work in sheltered employment facilities. This is especially the case when the working conditions and the benefits offered are below the minimum standard and when being employed in such facilities does not give persons with disabilities with an opportunity to transition later into the open labor market. Discrimination in these sheltered forms of employment should be assessed by examining the pay received by employees with disabilities, their union rights, any reasonable adaptation of the workplace, their access to technological and vocational guidance, and their chances of transitioning into the open labor market.287 Romania lacks any mechanisms to prevent and monitor segregation and discrimination in ASFs or WISEs that employ persons with disabilities. Romanian law does not provide any recommendations, obligations, or performance indicators for monitoring the transition of persons with disabilities into the open labor market after a period of employment in ASFs or WISEs. An order from 2017 outlined a set of indicators for monitoring WISEs but no methodology for calculating them.288 As a result, persons with disabilities have only limited access to technological and vocational guidance or to the open labor market.289 However, there are some successful ASFs and WISEs developed by NGOs that have been registered for over 10 to 15 years and are considered leaders in the social economy sector in Romania.290 These successful 285 The 2020 NARPDCA lists included 36 ASFs, but only 22 could fill out the questionnaires, out of which only 19 filled out all the information, while two ASFs refused to respond. The remaining ASFs could not be identified or reached despite repeated attempts. For 2020, the Sole Register of Social Enterprises listed 135 social enterprises. Only 69 of them responded, out of which 68 filled out all the information, and five social enterprises refused to respond. The remaining enterprises could not be identified or reached despite repeated attempts. 286 Bolivia in 2016, Brazil in 2015, Canada in 2016, Germany in 2014, Lithuania in 2015, Luxemburg in 2017, Poland in 2018, Portugal in 2015, Moldova in 2016, and Slovenia in 2018. 287 EASPD (2018). 288 See Ministry of Labor and Social Justice (currently Ministry of Labor and Social Protection Order no. 406/2017 on approving the guidelines for outcome, output, and impact indicators to be used by social enterprises/work inclusion social enterprises for annual reporting purposes. 289 According to the World Bank survey of ASFs and WISEs carried out in August 2020, in 2019, four persons holding a disability certificate obtained employment on the open labor market out of a total 43 persons employed by WISEs, and one out of the 21 holders of disability certificates employed by ASFs. 290 These organizations have created social economy structures and, as sole associates, founded limited liability compa-nies (NESsT, 2018). 128 Employment sheltered employment providers have been offering their beneficiaries not only jobs but also counseling, training, and assistance in the workplace. Public funding is essential to the functioning of sheltered employment. Recent analyses291 have shown that providers of sheltered work can obtain funding from various sources, but public funding is critical to their survival, provided either as direct subsidies or as incentives such as exemptions from taxes or reserved public procurement contracts. EU Directive no. 24/2014 regulates reserved public procurements and encourages the inclusion of social provisions in public procurement contracts. These provisions may be applied in procurement contracts concluded with “sheltered workshops292 and economic entities whose main aim is the social and professional integration of persons with disabilities or disadvantages in the context of sheltered employment programs, if at least 30 percent of the employees of the workshops, economic entities, or programs concerned are workers with disabilities or disadvantages.” Some member states have opted to make reserved public procurement obligatory by law. The funding of sheltered employment in Catalonia, Spain BOX 23 In Catalonia, the provisions of the EU Directive are enshrined in Law no. 9/2017, which stipulates that public procurement contracts must integrate social and environmental requirements. The law also requires that small and medium-sized enterprises and social enterprises must be given awarded more public contracts. Specifically, these contracts can be reserved for work inclusion enterprises and centers specializing in social employment and initiatives, and local authorities have an obligation to set aside a minimum percentage of all public procurement contracts for reserved contracts, which is generally from 1 to 5 percent. According to the public procurement website of the Catalan government, in 2019, the value of reserved contracts in Catalonia was €27.6 million. Source: FEICAT (2019). Although contracting public authorities in Romania have the option to reserve procurement contracts for ASFs and WISEs, this does not happen in practice. The EU directive on this matter was enshrined in Romanian legislation in the form of several articles of Laws no. 98, 99, and 100/2016. This legislation stipulates that, in some situations, “the contracting authority can reserve the right to participate in public procurement procedures only to sheltered facilities authorized under Law no. 448/2006 […] and to work inclusion social enterprises under Law no. 219/2015.” These provisions did not result in a significant number of reserved contracts or in noticeable growth of the social economy sector, mostly because of the lack of regulations and a lack of awareness among contracting public authorities of the potential social impact of implementing this type of contract.293 ASFs have suffered greatly over the past few years because of legal reforms that have affected financial incentives. Since 2007, employers that fail to meet the 4 percent quota of employees with disabilities were able to opt to either pay a penalty in the amount of 50 percent of the gross minimum wage multiplied by the number of jobs not assigned to persons with disabilities or purchase products and services from 291 EASPD (2018). 292 In the opinion of authors of this chapter, the correct translation should be “sheltered units.” According to Law no. 448/2006, “sheltered workshop” has a different meaning, namely “the space adapted to the needs of disabled persons where they carry out training and skill development and improvement activities; it can operate in community locations, in day centers, residential centers, and special education establishments.” 293 One such gap in regulation is suggested by the concerns of some authorities about possible sanctions from audit bodies or complaints because the best quality/price or quality/cost ratio requirement is difficult to put into practice. Another administrative obstacle is that the public procurement electronic system does not provide fields where the options reserved contract/procurement or ASF or WISE suppliers can be checked (Nonprofit Center for Legislation, 2019). 129 Employment ASFs in the same amount. The removal of the second option as of August 2017 led to a marked reduction in the number of ASFs.294 In 2016, there were 759 active ASFs employing 2,015 employees with disabilities, but by 2020, only 36 were registered.295 In August 2020, the option to purchase goods or services from ASFs in an amount equivalent to half of the penalty was reintroduced in the legislation. In addition to this incentive, ASFs also receive other tax exemptions,296 but these have proven insufficient given the evolution of the sector over the past three years. No incentives are granted for the training and/or later labor market inclusion of employees with disabilities. There is almost no public financial support for the sector.297 Few incentives are granted to WISEs any more, most of which have been through EU funding. There was a significant growth in the number of WISEs between 2009 and 2015 when dedicated funding was available as part of the EU’s Operational Program for Human Resources Development. However, given that this program existed only for a short time, some of the WISEs were probably not sustainable as they did not have the resources necessary to continue after the EU funding ran out. Any other incentives provided in the Romanian legislation are minimal and are generally underused by the authorities.298 As with the ASFs, no incentives are granted to WISEs for training and/or ensuring the labor market inclusion of employees with disabilities. Out of the 14 WISEs that responded to the World Bank survey, 11 said that they had received no form of support from the public authorities in 2019 that was specifically related to their status. Given the very low level of support for the ASFs and the WISEs from the Romanian government, they are in practice forced to compete with other business operators. As a result, they choose applicants with less severe disabilities or they go into economic decline and eventually disappear from the market, which considerably lowers the chances of persons with disabilities finding the sheltered employment that they need. Recommended measures The following measures are recommended: 1 The Ministry of Labor and Social Protection (MLSP) and the Ministry of Justice to amend the legal provisions limiting the right of persons placed under guardianship in order to allow them to exercise their right to work.299 2 The MLSP, the Ministry of Health, and the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to revise the legislation regarding the supervision of workers’ health to eliminate the possibility 294 Mijatovic (2018a). 295 Only 24 ASFs could be reached for the World Bank survey, which in total employed only 121 employees with disabilities. 296 Art. 82 para. (1) of Law no. 448/2006 mentions: exemption from the payment of authorization fees for establishment and reauthorization; exemption from the payment of income tax provided that at least 75 percent of the fund obtained through the exemption is reinvested in restructuring or purchasing technological equipment, machinery, work installations, and/or the arrangement of sheltered jobs; other rights granted by local public administration authorities financed from their own funds. 297 Out of the 22 ASF that answered the World Bank survey, 20 said that they did not receive any kind of support from public authorities as a result of their status in 2019. 298 Law no. 219/2015 stipulated under Art. 16–21 the following incentives for WISEs: (i) the possibility of being granted special terms by the contracting authorities in the public procurement procedures; (ii) the waiver of fees for issuing of the social license and for registering with the Sole Register of Social Enterprises; (iii) the possibility of being granted incentives by the local public administration authorities including the use of public spaces and/or land, support with promoting products/services/works and with identifying markets for them, support with promoting tourism, and other incentives and exemptions from taxes and duties; and (iv) incentives granted to other types of business operators including free counseling for setting up and/ or growing a business offered by the county agencies for employment, incentives granted to employers that provide labor market integration, state aid, and programs for microenterprises. 299 Law no. 53/2003 – Labor Code, Art. 13 para. (4) of, and Law no. 287/2009 on the Civil Code, Art. 172. The guardian could sign the individual employment contract on behalf of the person under guardianship if the job was suitable (sheltered, adapted, or with workplace assistance) and deemed suitable by both the guardian and guardianship authority. Under similar circumstances, the persons under guardianship should be able to legally work as self-employed. 130 Employment of occupational medicine doctors establishing permanent or temporary incapacity upon a person’s employment.300 3 The MLSP and the Ministry of Finance to analyze the opportunity of supplementing the funds allocated to the National Employment Agency (NEA) with an amount equivalent to the payments made to the state budget for the penalties for not employing persons with disabilities, in order to support employment programs dedicated to persons with disabilities.301 4 The NARPDCA to amend the law to ensure that the full-time employment of each person with a severe disability certificate counts as two reserved positions towards meeting the quota set for employers with over 50 employees.302 5 The NARPDCA to amend Law no. 448/2006 so that the minimum percentage of days worked by persons with a disability certificate in the total number of days worked in the authorized sheltered facilities (ASF) is 30 percent, the equivalent of the minimum percentage of employees with a disability certificate. 6 The Romanian Government to introduce a legal obligation for all public institutions, regardless of how many jobs or employees they have, to publish on their website every year the total number of their employees and of their employees with disabilities and for all institutions with over 50 employees to publish these figures in comparison with the thresholds required by the quota system. 7 The NARPDCA and the National Agency for Fiscal Administration (NAFA) to publish an annual report on the total number of employees and employees with disabilities in the public system based on the institutions’ annual reports and NAFA data. 8 The MLSP to reduce the period during which employers must continue to employ persons with disabilities from 18 to 12 months as a requirement for receiving subsidies under Law no. 76/2002.303 9 The MLSP to remove employers’ obligation to employ persons with severe or marked disabilities for a minimum period (12 months currently) in order to receive subsidies. In other words, regardless of how long the employment lasts, the employer should receive the subsidy by mentioning the maximum duration304 in which it can be granted.305 10 The MLSP and the NEA to grant a subsidy to employers who hire persons with disabilities for adaptations to the workplace instead of the current income tax exemptions.306 11 The MLSP, the NEA, and the NARPDCA to assess the possibility of setting more ambitious goals for the National Employment Program in terms of including 300 GD no. 355/2007 includes the option for occupational medicine doctors to designate persons with disabilities as “unfit for work.” 301 This analysis would cover Law no. 448/2006 on the protection and promotion of the rights of persons with disabilities (Art. 78 para. (3)), Law no. 76/2002 on the unemployment insurance system and employment stimulation, Law no. 500/2002 on public finances, as well as secondary legislation. 302 This amendment would be reflected in fiscal regulations, for example, in Form 100 on the payment obligations to the state budget submitted monthly by the employers. 303 This would effectively subsidize the jobs assigned to persons with disabilities throughout the period during which the employers have an obligation not to terminate their employment (at least 12 months), which would significantly reduce the costs with these employees’ labor (the labor of persons with disabilities would thus become cheaper in the medium term). 304 12 months for persons with a disability certificate and 18 months for graduates with a disability certificate. 305 For this purpose, Law no. 76/2002, Art. 80 para. (2); Art. 83 para. (1) and Art. 85 para. (2) should be amended. 306 The subsidy for compensating employers for the productivity deficit should correspond to a percentage of the person’s salary proportional with the duties within the job description that they cannot perform. The estimate of this deficit should be made by the GDSACP together with the NEA, through a public service with responsibilities in the field of employment of persons with disabilities. 131 Employment persons with disability certificates in active labor market measures. 12 The NEA to strengthen its capacity to provide case management to persons with disabilities. 13 The NEA to enable the subcontracting of employment services to accredited private accredited providers as well as strengthening their own capacity to control the quality of those services.307 14 The NEA to ensure the accessibility of the physical, information, and communications environments where employment services are provided.308 15 The NARPDCA to conduct awareness raising campaigns to inform, to raise awareness, and to motivate persons with disabilities and employers, including public authorities and institutions and public legal entities.309 16 The MLSP and the Ministry of European Investments and Projects (MEIP) to grant financial support to ASFs and work inclusion social enterprises (WISEs) that employ persons with disabilities, if they provide training for the labor market and the transition of persons with disabilities to the competitive labor market. 17 The MLSP and the NEA to financially support a percentage of sheltered jobs in ASFs for persons with disabilities subject, on the condition of meeting several target indicators for getting their workers into the competitive labor market within a set period. 18 The National Authority for Public Acquisitions (NAPA) to amend the public procurement law to transform into an obligation the current option to award reserved public procurement contracts to ASFs and WISEs and to specify a minimum quota.310 19 The MLSP and the Ministry of Finance to grant easier fiscal terms to ASFs and WISEs that employ persons with severe or accentuated disability/III-degree disability pension than the terms provided to those that employ persons with moderate or mild disabilities.311 20 The NARPDCA to conduct a process and impact assessment of the new ASF legislation one year after its approval. 307 This would be achieved through several legislative amendments (to GD no. 174/2002 - art. 32, Annex 7; GD no. 277/2002 - Annex 1, Art. 2 para. (2), 3; Art. 15; GD No. 377/2002 – Art. 2 para. (2)-(5)) and through an order issued by the NEA stipulating the conditions under which accredited providers (public or private) may provide services dedicated to persons with disabilities and financed from the insurance budget for unemployment. The CEAs should sign contracts with accredited providers of specialized services to boost employment among persons with disabilities. 308 For example, in the physical environment, this would include the availability of ramps, adapted access ways, and tactile flooring. In the information environment, this would include adapting the content of the information and counseling activity to the level of understanding of persons with intellectual disabilities or integrating elements of independent living and work/employment culture in the information given depending on the experience of the jobseekers. In the communications environment, this would, where necessary, include the use of a sign language interpreter. 309 In the case of persons with disabilities, the awareness-raising campaigns should focus on promoting the employment potential of persons with disabilities, on ensuring both their social benefits and their employment income, or other non-financial benefits that come with being employed. The main target group of these campaigns should be inactive persons with disabilities who can be persuaded to enter the labor market through information and awareness raising. As for the employers, the campaigns should focus on promoting the employment potential of persons with disabilities, the added value that they bring to companies/ organizations/institutions, the incentives that the employers can receive, or the benefits for society as a whole. The campaigns could include training courses, conferences, and advertising in the mass media. 310 This support for ASFs and WISEs would be granted in accordance with national and EU legislation on state aid. The first legal provisions that would need to be amended are Art. 56 para. (1) and Art. 112 para. (1) of Law no. 98/2016, Art. 69 para. (1) and Art. 125 para. (1) of Law no. 99/2016 and Art. 25 para. (1) of Law no. 100/2016. 311 For example, the lowering of the reinvested profit threshold for obtaining an exemption from profit tax, under Art. 82 para. (1), let. b) of Law no. 448/2006, with a view to encouraging the employment of less employable persons. At present, the profit that a company must reinvest to obtain exemption from profit tax is set at a threshold of 75 percent. 132 Employment 3.2 3.2 Low quality Low of employment quality of employment IN SHORT What are the rights of persons with disabilities? Employed persons with disabilities with employment should not be poor. Workplaces should be adapted to meet the needs of employees with disabilities. What is the situation in Romania? Persons with disabilities who work are more often poor compared to persons without disabilities who work. 19% 14% of persons with disabilities VS of persons without disabilities Persons with disabilities have more often precarious jobs compared to persons without disabilities, in which many employees can become poor. 44% 33% of persons with disabilities VS of persons without disabilities Few workplaces are adapted to provide good working conditions for persons with disabilities and to allow them to fulfill their productive potential. Persons with disabilities seldom work according to a different work schedule and perform tasks appropriate to their needs. Employers rarely modify their buildings or workplaces in order to adapt them to the needs of their employees with disabilities. Employers seldom provide any special working equipment to help their employees with disabilities to work better (such as special phones and computers, Braille keyboards, or reading devices). What are the causes of this problem? Many persons with disabilities encounter barriers during their schooling that prevent them from benefiting from education and training relevant to the better-paid professions. 133 Employment Organizations that defend the rights of employees (such as trade unions) do not focus enough on making sure that the rights of employees with disabilities are also being respected. Persons with disabilities are not given any assistance to start businesses. ANGAJĂM! The government does not provide adequate support or training to persons with disabilities to help them to seek and keep employment (for example, to seek and get a well-paid job). Sometimes persons with APLICĂ disabilities must be helped to do their job well, including through the temporary presence of a support person. The government does not support enough employers and persons with disabilities to buy assistive equipment and devices that would make the work of persons with disabilities easier and more productive. Employers are not informed about how much work and what kind of work persons with different disabilities can do. The subsidies that the Romanian government gives to employers to cover the costs of the adjustments needed to accommodate their employees with disabilities are inadequate. The law does not define exactly what kind of adjustments that employers need to make to adapt their workplaces to meet the needs of persons with disabilities. No checks are performed to make sure that persons with disabilities are treated fairly by their employers. What are the key changes that need to be made? Trade unions should be convinced to safeguard the rights of workers with disabilities. Businesses started by persons with disabilities should be supported financially by the government. Workplaces need to be appropriate to accommodate workers with disabilities. The government should advise employers on how to adapt their workplaces, so that persons with disabilities can be employed. The government should also cover the costs of these adaptations. The government needs to pay for the equipment and assistive devices needed by 134 employees with disabilities. Employment Diana At the age of three, Diana lost her hearing and speech due to an untreated infection. She spent her kindergarten years at a special institution in Focșani, where her teacher helped her to partially recover her speech. From first grade she attended a mainstream school in Bacău, where she also graduated high-school. Having graduated from the Faculty of Dentistry in Bucharest, she now works in a real estate agency. Sometimes, she would like to live in another country, where people would be more open and make her feel accepted. “I had trouble accepting myself in the past. I was verry ashamed. Because I was rejected, I developed depression and have done therapy. Now, after therapy, I feel like I am reborn. I try to convince other deaf people that they can do more. In the future, I would like to help deaf adolescents not to give up on school and to offer them guidance. I researched what other jobs deaf people have in Romania, but I didn’t find much. I talked to some, many of them didn’t even have their high school degrees. I felt that this couldn’t be, that there is no opportunity for us, and there are many of us. I find this very sad.” 135 Employment 3.2 Low quality of employment Persons with disabilities should have access to quality jobs that ensure a decent standard of living and are adapted to their needs. Quality employment for persons with disabilities should ensure economic independence and protection against poverty, as well as personal fulfillment.312 The analysis of the challenges that persons with disabilities face in finding quality employment will address the following two problems: (i) in-work poverty faced by persons with disabilities and (ii) the insufficient adaptation of jobs and the lack of access to supported employment. 3.2.1 In-work poverty faced by persons with disabilities Employment should provide persons with disabilities with an adequate safeguard against poverty. In order to attract persons with disabilities into the labor market, employers should offer them opportunities to earn incomes above the poverty threshold. When this does not happen, the reason is often the inequitable structure of the labor market, which forces many persons with disabilities into taking jobs with insufficient wages. The poverty of wage earners is examined under the forms of wage poverty, and the poverty of the self-employed. Moreover, the characteristics of the labor market and employment policies that facilitate this problem are discussed. Description of the problem In Romania, employment does not safeguard many persons with disabilities against the risk of poverty (AROP).313 About 19 percent of employed persons with disabilities aged between 18 and 64 were at risk of poverty in 2018, 5 percent higher than the percentage for employed persons without disabilities (Figure 16).314 The AROP level was slightly higher for the population with severe disabilities; respectively, 20 percent were in poverty. Romania has the second highest level of poverty in EU-27 for employed persons with disabilities after Luxemburg. In 2018, the AROP level in Romania was almost twice the EU average of 11 percent. The risk of in-work poverty for employed persons with disabilities has not varied significantly in recent years, with the value in 2018 being only 0.7 percentage points above the 2015 value (the difference is not statistically significant). Persons with disabilities who are self-employed, either as managers or family workers, have a much higher risk of poverty than employees (Figure 16). 312 European Commission (2020c). 313 AROP is the share of people with an equivalized disposable income (after social transfer) below the at-risk-of-poverty threshold, which is set at 60 percent of the national median equivalized disposable income after social transfers. This indicator measures low income in comparison to other residents in that country, which does not necessarily imply a low standard of living. However, in Romania, 29 percent of persons with severe disabilities and 15 percent of persons with some disabilities reported in 2018 that they could make ends meet with great difficulty (World Bank calculations using EU-SILC data). 314 Fifteen percent of the total employed population was in AROP in 2018, compared with an average of 9 percent for the EU-27 (Eurostat, indicator ilc_li04, https://appsso.eurostat.ec.europa.eu/nui/show.do?dataset=ilc_li04&lang=en). 136 Employment FIGURE 16 In-work at-risk-of-poverty rate for persons aged 18–64, with and without disabilities, by employment type (employees and self-employed), 2018 Persons without disabilities: Employed, of which 14% 9% Employees 4 % 7% Self-employed* 54% 21 % Persons with disabilities: Employed, of which 19% 11% Employees 7 % 9% Self-employed* 55% 26% Persons without disabilities Persons with disabilities EU-27** Source: Eurostat indicator ilc_iw01, https://appsso.eurostat.ec.europa.eu/nui/show.do?dataset=ilc_ iw01&lang=en Notes: * Managers or unpaid family workers. ** EU Member States of 2020. The proportion of self-employed persons with disabilities is higher than that of persons without disabilities. Self-employment is a risk factor for persons without disabilities as well, as they are also exposed to poverty in high proportions (Figure 16). However, persons with disabilities who are employed have a higher probability than those without disabilities of being self-employed. Thus, 30 percent of persons with disabilities who are in work are self-employed or family workers, compared to 22 percent of persons without disabilities who are in work.315 A significant proportion of self-employed persons with disabilities are in precarious jobs, such as seasonal work with subsistence incomes. Self-employment among persons with disabilities is often the consequence of the limited availability of contractual salaried work, which often pushes them into economically precarious employment in the informal sector. Some of these activities are in subsistence agriculture and, in many cases, are exclusively for self-consumption.316 Besides the fact that it generates inadequate incomes, self-employment in the informal sector triggers other problems as well, especially the lack of access to social insurance systems. 315 Calculations made by the World Bank using data from EU-SILC data, 2017-2018. 316 EU-SILC data offers only a partial image on the self-employment phenomenon, but the available estimates support the conclusions of the qualitative research. Thus, only 2 percent of the working persons with disabilities in cities are self-employed, compared with 27 percent in towns and suburbs, and 48 percent in rural areas. These estimates show that self-employment is higher in the areas where salaried opportunities are rarer and occasional jobs in agriculture, and sometimes non-agricultural daily works, are more frequent. 137 Employment Explanation of the problem Equitable access to quality jobs Persons with disabilities are more frequently employed in low-skilled jobs, and less often in highly qualified ones, than persons without disabilities. Persons with disabilities, especially those with severe disabilities, are employed in higher proportions in occupations that require a low level of education, often just general studies (“elementary occupations” in Table 2), or in occupations that require at most a secondary education (“occupations 2-4”). At the same time, persons with disabilities occupy fewer positions that require a higher, post-secondary, or specialized education (“occupations 6-9”) than the population without disabilities. Occupations of persons aged 20–64 by ISCO classification, 2017/2018 (percent) TABLE 2 Persons… Without disabilities With some disabilities With severe disabilities Cumulative Cumulative Cumulative Percentage Percentage Percentage percentage percentage percentage 1. Elementary occupations 15 15 10 10 9 9 2. Plant and machine operators, 16 31 11 21 12 21 and assemblers 3. Qualified and assimilated 33 65 27 48 19 40 workers 4. Skilled agricultural, forestry, 9 74 15 64 14 54 and fishery workers 5. Service and sales workers 11 85 14 78 16 70 6. Clerical support workers 3 89 3 81 3 73 7. Technicians and associate 3 91 5 87 7 80 professionals 8. Professionals 5 96 10 97 16 97 9. Members of the judiciary body, of the execu-tive, high positions in the public 2 98 2 99 2 99 administration, leaders/ managers, and high civil servants 10. Armed forces 2 100 1 100 1 100 Source: Calculations made by the World Bank using EU-SILC data. Note: ISCO is the International Standard Classification of Occupations, an International Labor Organization (ILO) classification structure for organizing information on labor and jobs. The inequitable structure of employment of persons with disabilities compared with that of persons without disabilities is largely driven by the imbalance in educational attainment. Persons with and without disabilities but with the same level of education have a similar probability of getting jobs requiring low skills. Hence, the higher proportion of persons with disabilities in low-skilled jobs is largely explained by their lower educational achievement (Annex-Table 19). The limited access that persons with disabilities have to quality employment is also related to discrimination in the workplace. According to the World Bank survey for persons with and without disabilities, 14 percent of employed persons with 138 Employment disabilities felt to a very large extent discriminated against in the workplace due to their disability. Among persons with severe disabilities, this proportion rises to 29 percent. The interviews conducted with representatives of the National Employment Agency (NEA) and of NGOs, and persons with disabilities highlighted the problems faced by persons with disabilities in how they are perceived and treated by employers: Persons with disabilities are sometimes discouraged from occupying positions requiring a high level of performance, responsibility, or public relations, for various reasons, such as not to be exposed to social stigma in the case of jobs implying interactions with the public; and In line with practices existing before 1990, there is a tendency to pigeonhole persons with disabilities into certain professions depending on their type of disability (for instance, in the past, the visually impaired were expected to make brushes, and now, the expectation is for them to be hired as masseurs). Adequate representation of the rights of workers with disabilities by trade unions Trade unions are not actively representing the specific rights and needs of workers with disabilities.317 Some persons with disabilities face challenges in accessing adapted workplaces (this problem is discussed extensively in section 3.2.2), and some are confronted with discrimination. These deficits in the quality of their workplaces hinder their professional development, including the level of their earnings. However, currently no trade unions are supporting the specific rights of persons with disabilities or who have made this topic a priority.318 The activity of the Romanian Economic and Social Committee (the negotiation body functioning at the highest level of the government, employers, and unions) has not shown any particular interest in sustaining a social dialogue in support of workers with disabilities. Employees with disabilities need adequate representation that takes into account their specific protection needs with regard to non-discrimination and accessibility in the workplace. There is no collective agreement at the national level for employees with disabilities, and the idea of having one has not yet been explored. Collective agreements can be negotiated at the national, branch, or enterprise level. They set out a minimum set of rights granted to employees and the obligations of employers related to concluding and implementing a contract, laying someone off, the health and safety measures, working and rest hours, and professional training, as well as employees’ obligations. The drafting of such a collective agreement at the national level for employees with disabilities would be a good way to put some of the CRPD’s provisions into operation in Romania and to set a foundation of minimum guaranteed rights ahead of the next version of the future NSRPD 2021-2027. Persons with disabilities have access to self-employment, which is associated with an increased risk of poverty, rather than to economically sustainable entrepreneurship initiatives. The Convention recommends the promotion of “opportunities for self- 317 A 2017 ILO report focuses on the role of trade unions in achieving four objectives in the area of promoting the rights of persons with disabilities in the labor market: (i) employment promotion; (ii) social assistance for workers with disabilities or workers from families of persons with disabilities; (iii) social dialogue, including collective bargaining; and (iv) setting standards and rights at work through legislation. The report specifies that “Collective agreements may also offer specific requirements in the phase of recruitment, employment, and/or return to work of persons with disabilities. Often they will make explicit or reiterate existing legal or policy conditions on employment of persons with disabilities. Trade unions have been able to include disability in collective bargaining agreements in many countries, in contexts as diverse as Argentina, Canada and Uganda” (ILO, 2017). 318 The only exception is the Federation of Unions for Personal Assistants of Persons with Disabilities. However, these unions do not represent the interests of workers with disabilities, but those of their family members who are employed as personal assistants. 139 Employment employment, entrepreneurship, the development of cooperatives, and starting one’s own business.” However, self-employment currently tends to be a source of economic vulnerability, which puts the self-employed at a high risk of falling into poverty. Romania’s current public programs do not support sustainable entrepreneurship for persons with disabilities in the true spirit of the CRPD’s recommendation as opposed to subsistence self-employment. The National Strategy for Employment 2014-2020 aims to encourage entrepreneurship, but the Romanian state does not implement any measures to support persons with disabilities in setting up their own businesses. The Ministry of Economy, Entrepreneurship, and Tourism develops multi-annual national programs to support small and medium-sized enterprises (SMEs), but there is no special provision for persons with disabilities. The NEA provides consultancy and assistance to people starting an independent activity or a business, but only 120 people benefitted from these services in 2018, and there was no person with disabilities among them. 3.2.2 Insufficient job adaptation and lack of access to supported employment Jobs should be adapted to the needs of persons with different disabilities. The adaptation of jobs would give persons with disabilities an equal opportunity to access quality jobs. This is because either persons with disabilities cannot carry out certain activities in the absence of adaptations or, if they can, it is not in optimal conditions (their performance would improve if the adaptations were made). International research indicates that investments in this field are cost-efficient, increase productivity, and reduce absenteeism.319 Adaptations can be made to the working space and equipment training and assessment programs, job descriptions, and working time. Assistance in the workplace can be provided, as described in Box 24. Types of adaptations used worldwide BOX 24 There are several types of adaptations frequently encountered worldwide. In practice, they need to be adjusted to the needs of each (potential) employee with disabilities. Adapting working Persons with disabilities may need to work fewer hours or for only certain time periods of time during the day as they may need to take breaks for treatment or rest. Examples can be found in France, Germany, Denmark, Greece, Slovenia, Latvia, and Finland. Adapting responsibilities Persons with disabilities may need, or could be more efficient with, a and working reorganized job description, personalized workflows, adjusted communication procedures, and decision methods within a team, more accessible tasks, or information opening the provided in alternative formats. While respecting the confidentiality of the organizational person’s medical diagnosis, it may be necessary to transfer the employee culture to to a different position if their disability worsens. Examples can be found in diversity France, Germany, Denmark, Greece, Slovenia, Malta, Bulgaria, and Finland. 319 European Parliament, Directorate-General for Internal Policies of the Union (2015). 140 Employment Adapting the Accessing and moving around in the employer’s building can be problematic workspace, the for employees with disabilities. For persons with mobility difficulties, with access to the visual or hearing impairments, or even with some psychological disorders workplace, the (such as social anxiety), reconfigurations of the working space can be pathways and devised: for instance, the introduction of ramps and elevators, the removal other facilities in of architectural barriers, the introduction of tactile rugs, the preferential the building granting of working spaces (on the ground floor or in areas with more light), or the adaptation of toilets. Examples can be found in Germany, Denmark, Greece, Austria, and the UK. Special working Persons with disabilities may require adapted versions of the equipment used equipment and by their colleagues who do not have disabilities (such as adapted computers assistive devices or phones, Braille keyboards, or ergonomic chairs) or may require special equipment (such as reading devices, hearing aids, or car adaptations) to improve their functioning and, implicitly, their work performance. Adaptive solutions are frequently (but not exclusively) used when the employee acquires a disability and the company makes efforts to keep him in the team. Examples can be found in Germany, Slovenia, Sweden, Greece, Finland, Austria, Poland, and the UK. Assistance in the Some workers with disabilities require the support of another person only workplace temporarily, while others can do their job only if assisted full-time. Since this requires two full-time employees (even for a limited period), employers can rarely afford this type of assistance, which is why public funding is necessary. The assisting person can be a specialist (vocational counselor, occupational therapist, psychologist, educator, personal assistant, or sign language interpreter) or a colleague trained in the field who can help the employee with disabilities (usually, intellectual disabilities or with hearing impairments and/or with speech impediments) to learn how to carry out their tasks, how to communicate with the team, or how to blend in with the organization. Examples can be found in France, Spain, Latvia, Sweden, Finland, Ireland, and the UK. On the job Employees with disabilities may need the training (formal or informal) training provided in their new workplace to be adjusted, either content wise, adjusted to the level of understanding of persons with intellectual disabilities, or communication wise for persons with hearing impairments or speech impediments, using written directions, in a simple and concrete manner, or resorting to a sign language interpreter. Often, the team in which the person with disabilities is integrated will need training and awareness raising about how to interact and communicate with future colleagues with various types of disabilities. Examples can be found in Sweden, Malta, and Austria. Solutions for Sometimes going to work can pose problems for persons with motor disabilities getting to work or with visual impairments. Solutions range from organizing transportation or reimbursing the person with disabilities for their transportation to work or financing a system for getting them down the stairs or using an adapted means of transportation. This type of benefit can be found in the UK. The option of Many persons with disabilities would rather work from home, while others home-based cannot access adapted transportation to work. However, remote working work for persons with disabilities often only transfers the need for adaptation to the home of the person with disabilities. More importantly, working from home does not solve the social inclusion problems of persons with disabilities and deprives them of an important component of their employee status, namely that of being part of a team both in a work context and outside work. Examples can be found in Slovenia, Sweden, and Poland. Sources: Adapted from JDM Empowered Placements (2018), KMU Forschung Austria 2008), and European Parliament, Directorate-General for Internal Policies of the Union (2015). 141 Employment Description of the problem This section presents a brief overview of various types of adaptations that have been implemented in Romania following the same structure as in Box 24, relying on the limited information that is currently available. Adapting working time: Romania is a country with a low proportion of part-time jobs. The proportion of persons with disabilities aged between 20 and 64 years old working less than 30 hours is higher than those without disabilities of the same age (5 percent and 2 percent, respectively). This value is lower than that of most countries from the European Union (see Annex-Table 20). The analysis of EU-SILC data indicates that those who work under 30 hours a week mostly live in rural areas, small towns, and suburbs and have low education levels (Annex- Table 21). Thus, in Romania, part-time employment is predominantly associated with precarious employment and subsistence income and thus represents an exclusion from the labor market rather than a way of adapting employment to the needs of persons with disabilities.320 Adapting responsibilities and working procedures, an organizational culture open to diversity: As shown by the qualitative research, the working procedures are the adaptations that are made most frequently by employers in Romania, probably because they are the easiest to make as they mostly just involve organizational decisions. Some examples of this kind of adaptations are assigning tasks to the person with disabilities that are within their capacity or coordinating a team to naturally integrate the work output of the person with disabilities within the activity of the organization. The adaptations that we encountered during the qualitative research were frequently informal, meaning that they were not officially reflected in a personalized job description profile. Adapting the workspace, access to the workplace, pathways, and other building facilities:321 The adaptation of buildings is clearly a major issue in Romania. Data collected during the most recent inspection conducted by NAPSI indicates that none of the 1,442 buildings inspected in 2020 met all of adaptation criteria.322 Special working equipment and assistive devices: In Romania, these types of adjustments are occasionally made by NGOs that are recruiting staff from the pool of beneficiaries to whom they formerly provided job search and training support. Beyond these special cases, access to assistive devices is rarely subsidized by employers. Assistance in the workplace: Only about 3 percent of workers with disabilities reported in the World Bank survey of persons with and without disabilities that they require some assistance in the workplace (including personal assistants), most of whom are persons with severe disabilities. This low percentage among employees is explained by the fact that the lack of this type of support usually deters persons with disabilities from getting a job. Unlike in other countries, in Romania there are very few persons with disabilities assisted in the workplace, in some social economy businesses or in NGOs. 320 “Part-time employment is often associated with jobs that bring a lower income, less stability and lower prospects of evolution in training and promotion.” (ANED, 2013). 321 The qualitative research identified cases where these adaptations were carried out, but there are no figures to measure their occurrence countrywide. 322 For employees it can be even worse than how it is described in Chapter 1 on Accessibility and Mobility, since the building’s compliance to the accessibility criteria was checked by NAPSI only from the clients’ perspective, not employees. And the latter can access other, different spaces. 142 Employment On the job training: According to the qualitative research, many employers do not consider hiring candidates with disabilities because they fear the challenge of adapting the workplace and offering training. The topic of professionally training persons with disabilities will be discussed under sub-chapter 3.3. Solutions for getting to work: Public transit comes with numerous accessibility problems (see Chapter 1). There are very few cases nationwide in which a local authority, NGO, or employer (or a partnership among these entities) provides assistance to enable persons with disabilities to get to work.323 The option of home-based work: In 2018, this was a rare practice. Only 0.4 percent of the Romanian population aged between 15 and 64 were working from home compared to an average of 5.2 percent in the EU-27,324 but there are no data on the specific situation of persons with disabilities. Explanation of the problem The CRPD, the European Council Directive 2000/78/CE, and national legislation emphasize the obligation of employers to meet, as much as possible, workers’ legitimate needs for an adapted workplace. The need for employers to make workplace adjustments vary depending on the type of disability and the specifics of the professional activity in question. The limits are defined under the CRPD as “reasonable accommodation,” meaning that the modifications and adjustments should not “impose a disproportionate or undue burden of employers.” According to the CRPD Directive 2000/78/CE,325 in order to establish whether the necessary measures constitute a disproportionate burden for the employer, financial and all other costs must be taken into account, as well as the organization’s size and financial resources, and the possibility of obtaining public funding or any other type of subsidy. Romanian law defines “reasonable accommodation”326 but does not provide legal guidance on the situations in which an employer could be exempted from such an obligation.327 Financial incentives available to persuade employers to provide adapted jobs for persons with disabilities are inefficient. The only relevant measure in the Romanian legislation refers to “the exemption from the tax on profits of the amounts required to adapt the sheltered jobs and to purchase the machinery and equipment used in the manufacturing process by the person with disabilities.”328 Currently, Romanian employers do not make much use of this tax advantage. The qualitative research indicates four reasons why this happens: (i) many employers cannot afford to make the necessary adaptations; (ii) the process to be reimbursed for the invested funds is complex and the recovered amount only partially reflects the investment; (iii) not all employers have information about this incentive; and (iv) in many cases, employers are not even aware about the requirement to make changes in the workplace. 323 The qualitative research gives examples of persons who cannot even get out of their flat without assistance. 324 Eurostat, https://ec.europa.eu/eurostat/web/products-eurostat-news/-/DDN-20180620-1#:~:text=The%20percentage%20 of%20employed%20persons%20in%20the%20EU%20who%20sometimes,%25)%20than%20employees%20(2.8%25) 325 Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation. 326 According to Law no. 145/2020, the reasonable accommodation of a workplace means “all the modifications made by an employer in order to facilitate the right to work for a person with disabilities; it implies the modification and/or adjustment of the working hours, in accordance with the functional potential of the person with disabilities, the purchase of assistive equipment, technology and devices, and other similar measures” (point 2). 327 For instance, the ILO lists the situations in which an employer could be exempted from this obligation: (i) when he is not aware of the need for individual accommodation (for example, the employee is depressive and the employer is not aware); (ii) when the effective accommodation is not available (for example, a person acquires a visual impairment, and he would like to continue doing design work on a computer); (iii) when the accommodation imposes a “disproportionate financial burden” (such as the purchase of an elevator to be able to hire the user of a wheelchair) (ILO 2014). 328 Law no. 448/2006, Art. 84 (a). 143 Employment Job seekers or employees with disabilities have very limited access to assistive technology and devices subsidized by the public sector. Most available devices are for medical purposes, funded by the health sector,329 and are intended to enhance the functional capabilities of persons with disabilities in general but not to meet their needs in the workplace. Some persons with a disability certificate who are looking for a job have the option to apply for vouchers of up to RON 23,000 to pay for assistive technology and devices and access technology, subsidized by NARPDCA and NEA, within a project funded through the HCOP.330 However, according to the NARPDCA data, only 134 requests for these vouchers had been processed as of September 14, 2020.331 In Romania, there have been some positive experiences of GDSACPs and NGOs delivering supported employment services, but there is still no nationwide program in this area. In Romania, the concept of supported employment has been officially recognized in Law no. 448/2006, but no legislation to implement it has been developed. The law advocates “the option of employment [for persons with disabilities] that facilitates work in regular workplaces within the competitive labor market and that involves support in looking for a workplace, transportation, assisted technologies, training, specialization, and adjustment of the tasks in accordance with the potential of the person with disabilities.” An analysis of OECD in other countries suggested that the likelihood that persons with disabilities will obtain and keep a job increases considerably if they receive supported employment services.332 Aside from the rather limited provisions of the Law no. 448/2006, in Romania there is no adequate policy framework for supported employment services to be adopted at the national level, and only a few GDSACPs and NGOs have provided this type of service so far. These services have consisted of a package of support services, including vocational counseling, counseling for living an independent life, support in obtaining and maintaining a job, and professional training. Low quality of employment described by persons with disabilities BOX 25 “I feel constrained, forced to remain an unskilled worker for life. I always have to have someone without hearing problems by my side, I cannot manage on my own, I feel I cannot manage. No deaf person, with or without a person without hearing problems by her/his side, cannot manage and get promoted on her/his own. I would like to find a job that reflected my level of education, I know that I can do more, better. I feel that my employer does not want to help me excel at my job, although I know I could do it.” (Employed person with disabilities, Olt county) “They have us do all sorts of things, but only us, the guys from the center [residential center], because we are three. They also have an egg store, where they sort and pack eggs, but they do not use us for that. We do not spend time with the employees [without disabilities], often it is just us, the guys from the center.” (Employed person with disabilities, Olt county) “They are reluctant to say [the reasons for leaving a job]. Their answer is short: ‘I did not like it.’ Or: ‘My salary was too low’ but, basically, these phrases hide the real reasons.” (CAE representative) Source: World Bank qualitative research (February-May 2020). 329 Through the Single National Fund of Social Health Insurance, based on an updated list through the ministerial order of the MLSP, the Ministry of Health and the president of NHIH. 330 They need to register with NEA and to benefit from information, counseling, and mediation services. 331 The project started in 2019 and will finalize in 2022. More on the problems related to purchasing assistive technology can be found in Chapter 4 on Social protection. 332 A report analyzing the situation of 20 OECD countries found that 18 were implementing assisted employment programs, dedicated either to all persons with a certified disability or to persons with a limited working capacity or with certain types of disabilities (OECD, 2003). 144 Employment There are no guidelines providing technical information to employers on how to modify the workplace. Employers have to understand the need to adapt the workplace, analyze the workplace and the job description and take necessary reasonable accommodation measures to enable the employee with disabilities to carry out their activities in optimal conditions. There are no concrete recommendations to employers for setting out a minimum of necessary adaptations and the need to tailor them to each individual case and to the specifics of the workplace.333 In the absence of official guidance, the decision about which adaptations are to be provided is the result of a “negotiation” between the employer and the employee with disabilities, both of whom usually have limited awareness regarding the rights created by disabilities and have limited knowledge of the technical features of what adjustments are possible. There are currently no experts in Romania able to advise employers about reasonable workplace accommodations.334 Many employers do not currently hire persons with disabilities or do not provide any workplace adaptations for the employees with disabilities. Since this will be a new activity, it would be necessary for them to benefit from a service to provide specialized advice about adaptations to employers, including hiring processes, work procedures, the physical characteristics of workplaces, assistive technologies, flex-work, and training of employees.335 Ideally, such a service should consist of a multidisciplinary team able to assess the needs in accordance with the International Classification of Functioning, Disability, and Health (ICF), but unfortunately there is no public institution in Romania that provides this service. Moreover, the government has not issued any quality or cost standards that would guide employers in contracting these advisory services from private suppliers. The current legislation on occupational health is not specific enough to promote and guide adaptation in the workplace. Occupational health professionals play a predominantly preventive role and, among their many other responsibilities, are responsible for advising “employers on adjusting work and workplaces.”336 Therefore, occupational health professionals should make recommendations regarding hiring persons who are “conditionally fit for work” both in the initial and follow-up recruitment steps, so that employers put in place the minimal necessary adaptations. However, according to the qualitative research, they do not currently play an active role in making recommendations to employers about necessary adaptations when they hire persons with disabilities or at a later moment. The advice that they give to employers is often general and formal and not sufficiently tailored to the specific needs of persons with disabilities. Even if they do make specific recommendations, there is no monitoring or enforcement of their implementation. Because of this lack of 333 Sometimes the adjustments to be made are technically easy and cost-efficient (such as a badge or a poster); other adaptations are more complex, but very efficient (software for the visually impaired to be able to work in a call center). When hiring a person with Down syndrome, the person may need to be assisted by a mentor, who is to guide the person with disability in carrying out the latter’s tasks and to help the person become part of the team. 334 An example of good practice could be the service for supported employment (“Arbeitsassistenz”) developed in Austria, and implemented by nonprofit organizations and financed by authorities. It has five stages: (i) contacting the person with disabilities; (ii) drafting an occupational or training plan; (iii) information and initiation (pairing the employer’s needs with those of the employee); (iv) granting assistance (for some weeks or months); and (v) intervening in crisis situations. This service is charged with developing skills profiles of job seekers, identifying barriers and ways to remove them to facilitate access to the labor market, finding a suitable job, introducing the person in the workplace, providing psychological and social assistance in the workplace, developing working methods and organizational structures, providing assistive devices, facilitating communication and information exchanges between the person with disabilities and her colleagues and supervisors, and managing conflicts and crisis in dismissal situations (OECD, 2003). 335 In the UK, for instance, employment services have a disability employment adviser who has, among other tasks, the role of offering guidance on workplace adaptations. 336 According to Law no. 418/2004, the occupational health professional has the following main responsibilities: (i) monitor employees’ health status; (ii) advise the employer on how to adjust work and workplaces to tailor them according to the psychophysiological characteristics of the employees; (iii) communicate professional health hazards to all stakeholders; (iv) guide towards professional rehabilitation, vocational retraining, professional reorientation in case of work accident, occupational disease, or chronic conditions; and (v) take part in the assessment of occupational health hazards. 145 Employment enforcement, mechanisms should be set up to enable both employers and employees with disabilities to file complaints with respect to occupational health services. These mechanisms should be reinforced through controls and sanctions.337 The legal provision allowing occupational health professionals to declare persons with work disabilities as unfit for work is not aligned with the CRPD. The occupational health legislation stipulates the option to declare a person as “unfit for work,”338 as a result of “the medical incapacity to carry on the activity in the profession/position for which the occupational health exam is requested.” This contradicts CRPD provisions. The Labor Inspectorate has not conducted any campaigns on reasonable accommodation or other rights of persons with disabilities. Because Art. 83 of Law no. 448/2006 stipulates the right of persons with disabilities to reasonable accommodation in the workplace, labor inspectors should issue fines when employers do not observe this legal provision. However, according to the interviews with employers and Territorial Labor Inspectorates (TLI) representatives, labor inspectors do not check the quality of working conditions for persons with disabilities or carry out any publicity campaigns related to respecting the rights of persons with disabilities.339 Moreover, the Labor Inspectorate has no data on employers hiring persons with disabilities, which would enable them to plan thematic inspections focused on ensuring the necessary accommodations.340 Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to conduct regular information and consultation sessions with the main trade unions in Romania to activate the resources specific to social dialogue, so as to address the inequities that affect persons with disabilities on the labor market.341 2 The Ministry of Economy, Entrepreneurship and Tourism (MEET) to create a multi-annual national grant program to support SMEs set up by persons with disabilities.342 3 The National Employment Agency (NEA) to provide advisory services to persons with disabilities about starting a business by using adapted formats, with an annual target. 4 The NARPDCA, together with the NEA, to prepare a guide for employers on accommodating the workplace.343 337 Currently the errors are settled by the Medical College of Physicians. 338 GD no. 355/2007, Art. 11 paras. (1) and (2). 339 The only provisions on persons with disabilities within Law no. 319/2006, the law regulating the activity of Labor Inspectorates, is that “groups sensitive to specific hazards, groups that include pregnant women, women that have just given birth, or women who are breastfeeding, youths, and persons with disabilities, are to be protected against hazards that affect them specifically” and that “employers have the obligation to accommodate the workplace, taking into account the presence of groups sensitive to specific hazards.” 340 Inspection campaigns should target: (i) employers with over 50 employees with disabilities and (ii) employers with less than 50 employees who benefit from incentives for hiring persons with disabilities. 341 The purpose of these sessions would be to encourage the integration of disability in the activity of trade unions in Romania, given the inequities on the labor market affecting persons with disabilities and the low level of awareness and realization of their rights by employers. 342 The program would be similar to other national programs for SMEs conducted by the MEET. The program would implement a de minimis aid scheme for SMEs that include persons with disabilities as partners or shareholders. The implementation of this measure can be monitored by the SME, investment promotion, and export promotion agencies, and financed from the State budget through the National Agency for Small and Medium-Sized Enterprises and Cooperatives. 343 The guide could be distributed to employers or persons with disabilities via various channels used by employers’ associations, trading houses, the CEA, or GDSACPs. 146 Employment 5 The NEA to set up information points for employers on topics related to job accommodation based on the guide on accommodating the workplace. 6 The Ministry of Labor and Social Protection (MLSP), the NEA, and the NARPDCA to develop legislation on quality and cost requirements for support services for the purpose of job accommodation for employers and persons with disabilities.344 7 The MLSP and the NEA to introduce in the legislation the option of subsidizing job accommodation and assistive products to stimulate employers’ investment in this sense, instead of the deductions that are proposed by the current legislation.345 8 The Ministry of Health and the MLSP to amend and complete specific legislation on the professional status of the doctor in occupational medicine in order to increase the role of the occupational medicine examination in the reasonable accommodation of jobs by employers.346 9 The Labor Inspectorate to conduct thematic campaigns about the need for employers to make reasonable accommodations in their workplaces for persons with disabilities. 10 The MLSP to add a category for employees with disabilities in the General Record of Employees (GRE), and amend the law to oblige employers to provide this information. 344 The assisted employment service (public service with responsibilities in the field of employment of persons with disabilities, subordinated to the NAE) would carry out a job assessment (job description, workspace, equipment, procedures) and would provide reasonable accommodation-related consultancy to employers when hiring persons with disabilities. Staff would include an ICF-trained multidisciplinary team for a good assessment of the needs of persons with disabilities. This service could be funded from funds collected using the quota system. The services may be outsourced by the NAE to public and private providers, based on quality and cost standards, to be developed and enshrined by the relevant legislation. 345 This would be achieved by amending Art. 84 let. a) of Law no. 448/2006 so as to facilitate employers’ investments in workplace accommodations and assistive products by subsidizing the respective amounts (not by applying deductions when calculating the taxable profit). The new provision should describe how these amounts are subsidized, by indicating the categories of expenditure that can be covered, within clearly established limits and based on supporting documents. The amounts related to this right would be provided from the State budget through the NARPDCA budget; the conditions for granting this right would be established by order of the NARPDCA. This regulatory act would include specifications concerning the categories of reasonable job accommodations by type of disability and degree of impairment: accommodation of the workplace, equipment, training and assessment programs, job description and work program or providing on-the-job assistance. The order would include types of assistive technologies and a description of the on-the-job assistance services and categories of specialists who can provide this service, as well as the conditions for providing it. 346 Depending on the methodologies developed by the NARPDCA (including lists of accommodations and assistive devices), occupational medicine must recommend a set of minimal accommodations to be made by employers, where applicable, when hiring “conditionally fit” persons, both at the time of the initial recruitment exam and of the subsequent ones. 147 Employment 3.3 3.3 Limited access Limited to professional access training to training programs IN SHORT programs What are the rights of persons with disabilities? Persons with disabilities should have access to lifelong learning, including adult education, and to high-paying professions on an equal basis with persons without disabilities. This is important because many persons with disabilities encounter barriers during their schooling that prevent them from learning a trade, or the ones that they learnt are not paid well enough. What is the situation in Romania? According to the national survey of persons with and without disabilities conducted in 2020 for this report: Percentage of persons of working age who took Persons with disabilities can learn part in any type of training in the previous year: things that help them in their work to a lesser extent than persons without 36% disabilities (through school, qualification and training courses, 22% apprenticeships, seminars, on-the-job 11% learning from colleagues, and any other form of learning). The most Without With some With severe disadvantaged are persons with severe disabilities disabilities disabilities disabilities. What are the causes of this problem? Unemployed persons with disabilities are not thoroughly interviewed by employment agencies about what kind of Curriculum Vitae work they know how to do, are able to do, and would like to do. Therefore, training for the labor market is not based on the skills of these persons, does not improve their existing skills, and does not create new ones. 148 Employment Only 39 percent of persons with disabilities participated in training courses for the labor market organized by the NEA in 2019. The NEA training programs are not accessible and adequate to the needs of persons with disabilities. A large portion of European Union funding for solving specific social problems is budgeted for professional training courses. Up until September 2020, of the 152,645 persons whose professional training was paid for by European funds, only 449 were persons with disabilities. What are the key changes that need to be made? NEA should make more efforts to understand what are the needs and abilities of persons with disabilities. Preparation for the labor market should be start from what the persons know, could, and would like to do. The government should provide training programs for the labor market to more persons with disabilities. Institutions that provide training for the labor market should make appropriate adjustments to their buildings and services to be able to work with persons with disabilities in a way that suits their needs. European Union funding should specifically be earmarked to provide training to persons with disabilities to prepare them for the labor market. The Ministry of Investments and European Projects should offer data on how many persons with disabilities receive this type of training. 149 Employment Robert Robert is twenty-four years old and has spent the first twenty years of his life in placement centers and in the care of a professional foster parent. He has a mild intellectual disability. For the past five years he has been receiving services from an NGO that supports young people with disabilities to live independently in the community. With their help, Robert took a cooking class and did an apprenticeship at a restaurant that later hired him as an assistant cook. “I think that cooking chose me. It made me smile, got my imagination going, connected me with other people. This job can offer flavor and happiness to others. I want to open a small catering business and a social canteen for the needy. I learnt this from my job, because they donate to people in need. And I said, wow, this job can offer flavor and happiness. I want to pay it forward, to make it a small example that spreads.” 150 Employment 3.3 Limited access to training programs Persons with disabilities are less prepared for the labor market than persons without disabilities because they tend to have less education and access to adult learning programs. This section discusses the participation of persons with disabilities to adult education and training347 while their educational attainment will be discussed in Chapter 6 on Participation Education. of adults in at least one education and Qualification courses training activity 36% 10% Description of the problem 22% 6% Adults with disabilities participate to a much lower extent in education and training than adults11% without disabilities. In the World Bank 2% survey of persons with and without disabilities, only 22 percent of persons with some disabilities aged between 25 and Apprenticeship program, any level Participation in any type of course designed to 64 years old had declared taking part in any type of adult education and training develop skills that are helpful in the workplace in the previous 12 months compared to 36 percent of those without disabilities. This participation 4% rate drops to only 11 percent among 15persons % with severe disabilities. There were differences between persons with and without disabilities on all types of 2% 8% training: formal, nonformal, and informal.348 For example, in the case of formal learning, only 1 %2 percent of persons with severe disabilities 3 % participated in qualification courses compared to 10 percent of those without disabilities, and 1 percent of persons with Nonformal severe training delivered disabilities by workplace participated Adult education, in adult education coursesincluding evening (including classes courses). evening colleagues* Persons living in rural areas, who were female, or who had lower education attainment 26% 2% levels were significantly less likely to participate in any type of education and training, and this gap 17% to the detriment of persons with disabilities 2% within these categories is still observed Annex-Table 22). 6% 1% Participation in education and training during the previous 12 months, FIGURE 17 Participation in any type of course or any training or Learning from a package of training materials population guidance relatedaged 25–64 to driving, years playing old, 2020 (percent) an instrument, provided by an employer, colleague, company, or practicing an Participation ofart or in adults craft, a sport, at least or any other one education and training provider Qualification courses practical training ability activity 8% 36% 12 10%% 4% 22% 7% 6 % 2% 11% 23%% Participation in Apprenticeship any other program, course, training, or any level Participation in any type of course designed to guidance; for example, participation in a workshop or develop skills that are helpful in the workplace seminar 4% 10 % 15% 5 2% % 8% 3 1% % 3% Personstraining Nonformal withoutdelivered by workplace disabilities Adult Persons with some education, including disabilities evening with classes Persons severe disabilities colleagues* 26% 2% 17% 2% 347 Lifelong learning includes early education, pre-university education, higher education and adult education, and continuing 6%(Law no. 1/2011, Art. 328 para. (3) (see Annex-Table 24). training 1% 348 Pursuant to law (GO no. 129/2005, Art. 5), professional skills are acquired by means of formal, nonformal, and informal learning. Formal learning Participation inmeans any typethatoflearners course follow a program or any trainingorganized or by a training Learning fromprovider. Professional a package skills maymaterials be acquired of training by nonformal learning, more specifically by practicing specific activities in the workplace or by self-training. Professional guidance related to driving, playing an instrument, provided by an employer, colleague, company, or skills may be acquired by informal learning, more specifically, learning that is unstructured and unintentional and happens by practicing unsystematic an art or contact with craft, variousa socio-educational other in training sport, or any sources provider the family, society, or professional settings. practical ability 8% 12% 151 4% 7% 2% 3% develop skills that are helpful in the workplace 4% 15% 2% 8% Employment 1% 3% Nonformal training delivered by workplace Adult education, including evening classes colleagues* 26% 2% 17% 2% 6% 1% Participation in any type of course or any training or Learning from a package of training materials guidance related to driving, playing an instrument, provided by an employer, colleague, company, or practicing an art or craft, a sport, or any other training provider practical ability 8% 12% 4% 7% 2% 3% Participation in any other course, training, or guidance; for example, participation in a workshop or seminar 10% 5% 3% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). Note: *A supervisor or colleague who spends time with the employee to help him/her learn or develop specific skills, while carrying out certain tasks. Explanation of the problem The lack of preparedness for the labor market of persons with disabilities can be reduced by developing efficient technical and vocational guidance programs tailored to persons with disabilities. With this in mind, the following three key components will be discussed: 1. A vocational assessment mechanism for persons with disabilities. 2. Adult training adapted to the characteristics of persons with disabilities. 3. Adult training provided under European projects. A vocational assessment mechanism for persons with disabilities Persons with disabilities currently have to approach the labor market without any guidance about their skills, disabilities, or expectations. Their skills and potential for work is not assessed in either the social protection or employment systems.349 First, work capacity assessment is not performed as part of the process of disability certification, which is still mostly a medical process.350 Second, the disability assessment carried out by occupational physicians is also highly medicalized and only performed 349 The very definition used by the NEA for the registered unemployed includes a criterion referencing capacity, despite the fact that this capacity is not assessed: “The person who cumulatively meets the following conditions is considered unemployed: (i) be in the lookout for a workplace; (ii) be over 16 years of age; (iii) have a health and physical and psychological capacity for work; (iv) lack employment, work incomes, or make incomes below the value of the social reference indicator for employment policies; (iv) is available to start work immediately; and (v) is registered with the employment agency in the area where the person resides or another employment services operating under the conditions provided by law, to obtain a job.” 350 See the section on the disability assessment system in Chapter 4 on Social Protection. 152 Employment for those persons who had worked and paid social insurance before their disability occurred. Moreover, that assessment only focuses on the capacity of individuals to carry out the same activities and not on their potential to take advantage of labor market opportunities under different types of roles. Third, employment agencies lack the capacity, methodologies, or specific tools to assess the work potential of persons with disabilities to carry out successful job-matchings adapted to their specific needs. Therefore, the preparedness of persons with disabilities for the labor market would be enhanced by receiving a vocational assessment that identifies their skills and does not limit their labor market options (as they may apply for any job they want). The evaluation should be finalized with a series of elements that provide them and the professionals who support them (if any) with guidance in the job-seeking process. The assessment should be finalized with a series of elements to guide the job search process as a resource for both persons with disabilities and the specialists who will support them in this process (when appropriate). Adult training adapted to the characteristics of persons with disabilities Currently, the training provided by the NEA for persons with disabilities is almost non-existent. The law governing adult training351 requires that programs should be properly adapted to ensure equal and non-discriminatory access of persons with disabilities, which means ensuring the accessibility of facilities, equipment, training materials, a trainer’s teaching methods, and all other delivery-related aspects. However, in practice, there are very few examples of adapted courses, and the NEA representatives whom we interviewed declared that their training provision is quite poor in this respect. Only 39 persons holding a disability certificate participated in courses delivered by the NEA in 2019. Difficulties in accessing vocational training programs for persons with BOX 26 disabilities “The deaf-mute, for example, they wanted to take a plumbing course. They are capable to do it, but they need a translator, both for the theoretical and the practical tests. I cannot hire a translator for two people, the money is what it is, the facilities are what they are, and I cannot do this.” (CAE representative) “I went to apply [for a job], and they asked me who on earth gave me the physical therapy license.” (Employed person with disabilities, Cluj county) “Had there been as many HCOP projects for hiring persons with disabilities as there were for other vulnerable groups, things would be different.” (Representative of a PSAS, in an urban area, Maramureș county) Source: World Bank qualitative research (February-May 2020). Training provided as part of projects funded from European Funds Persons with disabilities were considered a priority group for employment interventions under the Human Capital Operational Program (HCOP) 2014–2020 (Priority Axes 1, 2, and 3).352 The HCOP Strategy mentions persons with disabilities as a disadvantaged vulnerable group in terms of access and participation in the labor market. Among the vulnerabilities of group, the strategy identifies their low level of employment as well as their low levels of educational attainment and participation 351 GO no. 129/2000. 352 POCU 2014–2020 has been implemented on seven Priority Axes in total. 153 Employment in lifelong learning and training. However, persons with disabilities are defined as a target group only for the interventions funded under HCOP’s Investment Priority 8i353 of Priority Axis 3, which means that in principle, calls for proposals could be launched specifically for them or that minimum mandatory targets can be set to include persons with disabilities as a target group of the projects. However, the number of persons with disabilities who benefitted from training programs under European Funds was very low. Projects funded under the first three axes of HCOP 2014–2020 include incentives for vulnerable groups, including persons with disabilities, to participate in courses for employment purposes (Table 3). In the programming period, not a single individual with disabilities was registered as part of the target group under Priority Axis 1, and the share of persons with disabilities under Priority Axes 2 and 3 was only 0.3 percent. Furthermore, only 1 percent of the total beneficiaries were registered as persons with disabilities (230 persons) under Investment Priority 8i. Number of persons who declared they hold a disability certificate, beneficiaries TABLE 3 of HCOP 2014–2020 until September 2020 No. of No. of Percentage of beneficiaries beneficiaries— persons with persons with disabilities disabilities Priority Axis 1: Initiative “Jobs for Young People” 2,137 0 Priority Axis 2: Improving the situation of NEET* youth 1,456 5 0.3 Priority Axis 3: Jobs for All 149,052 444 0.3 8i. Access to jobs for job seekers and inactive persons, including long-term unemployed and persons with low employment opportunities, including by local 21,593 230 1.07 initiatives to support employability and workforce mobility 8iii. Freelance activities, entrepreneurship, and start- ups, including innovative microenterprises and small 86,310 202 2.34 and medium enterprises 8v. Adjustment to change of workers, companies, 41,149 12 0.03 and entrepreneurs Source: Calculations made by the World Bank using data from MIEP. Note: *NEET = persons aged between 16 and 25 years old not in education, employment, or training. For 672 persons from 8iii and 250 persons from 8v, the data regarding disability was not reported. 353 Investment Priority 8i, Priority Axis 3 covers access to jobs for job seekers and inactive persons, including the long-term unemployed and persons with limited employment opportunities, including by local initiatives to support employability and workforce mobility. 154 Employment The failure to include persons with disabilities under HCOP can be explained by several features of the program: The HCOP monitoring system includes specific indicators that have minimum targets established at the program and project levels, but none of the indicators for the employment support interventions (Priority Axes 1, 2, 3) focus specifically on persons with disabilities. Information on persons with disabilities across the EU is collected using common indicators established by the European Social Fund Regulation.354 However, this information is subject to the rules of personal data protection in accordance with the General Data Protection Regulation (GDPR),355 and gathering information about the status of being a person with disabilities is done on a voluntary basis. HCOP has issued no calls for project proposals that include specific targets for persons with disabilities. The calls launched under HCOP’s employment or training programs include minimum targets for a specific set of indicators, such as: “people who benefit from support,” “people who, when they cease to be participants, acquire a qualification,” or “people who, when they cease to be participants, have a job, including freelancers.” Some calls have proposed minimum mixed targets for larger groups, including any possible combination between persons with disabilities and the long-term unemployed or people with low educational attainment levels. However, these were optional and no target has been set specifically for persons with disabilities at either the program or the project level (Annex-Table 23). HCOP has not issued enough instructions or facilities to encourage project implementers to include persons with disabilities in their target groups. Under the “Professional Romania” call (HCOP Priority Axis 3, Specific Objective 3.8), the state aid scheme increases co-financing from European Funds from 50 to 60 percent for those projects that provide training to persons with disabilities. However, other HCOP project calls have not included any specific requirements to support persons with disabilities or any instructions on how to do so, except for some very general provisions; for example, compliance with horizontal and secondary principles, eligibility of procurement of equipment to facilitate the access of persons with disabilities.356 The HCOP criteria for evaluating proposals did not encourage the selection of projects targeting persons with disabilities. Some guidelines357 include a supplementary criterion for scoring projects that contributes to the NSPD 2016– 2020, but this criterion is only awarded one point out of a total score of 100. 354 Regulation (EU) no. 1304/2013 of the European Parliament and of the Council of 17 December 2013 on the European Social Fund. 355 Regulation (EU) no. 679/2016 (GDPR) on the Protection of Individuals regarding the Processing of Personal Data and the Free Movement of Such Data. 356 Guides on Specific Conditions, Priority Axes 1, 2, 3. 357 For example, Priority Axis 3: “Improving the level of professional skills and increasing the employment rate for the unemployed and inactive persons in Jiu Valley according to the labor market needs,” “Facilitating the employability of unemployed by fostering mobility and job subsidies,” “National schemes - apprenticeship and internship programs for unemployed and inactive persons, Roma persons, rural persons” Priority Axis 3/IP. 155 Employment Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA), the National Employment Agency (NEA), and the National Qualifications Authority (NQA) to develop a methodology for assessing the competencies and abilities of persons with a disability certificate of active age that covers all of the components of the person’s lived experience358 as described in the International Classification of Functioning, Disability, and Health (ICF).359 2 The General Directorates for Social Assistance and Child Protection (GDSACPs) and NEA county offices under NARPDCA coordination to implement the methodology at the county level and should provide vocational guidance services to those persons with disabilities who are interested in employment.360 3 The Ministry of Labor and Social Protection (MLSP) to introduce additional obligations for training providers regarding the accessibility and adaptation of their training programs for persons with disabilities.361, 362 4 The Ministry of Investments and European Projects (MIEP) to monitor the indicators regarding professional training within EU-funded projects, disaggregated according to the status of being a person with a disability certificate. 5 The MIEP to launch calls for projects dedicated to persons with a disability certificate, which should include training services. 6 The MIEP to establish minimum target percentages of persons with a disability certificate among all beneficiaries within calls for projects where proposals addressed to persons with disabilities are also eligible. 7 The MIEP to include indicators in the evaluation criteria for each project regarding its relevance for improving the circumstances of persons with a disability certificate. 358 Working with persons with disabilities should take into account their nonformal educational attainments and preferences and needs. 359 One solution could be a public service charged with the employability of persons with disabilities, subordinated to the GDSACP, and placed under the methodological coordination of the NARPDCA, employing a multidisciplinary team trained on ICF (assisted employment service). One of their tasks would be to perform work capacity assessments, understood as proper appraisal focusing on labor market opportunities (not barriers) and on the work potential of persons with disabilities. Such a service could be financed from funds collected under the quota system (see previous proposal). This would require amendments to Law no. 448/2006, the tax code, the budget law, and other laws regulating the activity of the GDSACPs and the NAFA. 360 The goal of vocational guidance should be to provide adequate and accessible support for persons with disabilities in their (re) integration into the labor market. Vocational guidance would include elements of education for independent life, as appropriate. The services could be outsourced by GDSACPs to public and private providers, against quality and cost standards, which should be developed and included in the specific legislation. 361 Legal amendments will start with GO no. 129/2000, Art. 17 para. (3), and GD no. 522/2003, Art. 8 para. (2). 362 Such obligations should include at least: (i) physical environment accessibility (such as ramps, access routes, tactile flooring), communications accessibility (such as the use of a sign language interpreter), and information accessibility (such as adapting the learning contents to the level of understanding of persons with intellectual disabilities); (ii) adaptation of training program components as they are listed by GO no. 129/2000, Art. 17 (1): training program objectives, training duration, number of participants, trainer’s qualifications, curriculum, training means and methods, equipment and materials, and assessment procedure. 156 Social protection 4. Social 4. protection Mihaela Ten years ago, Mihaela had a motorcycle accident. Her husband died a few hours after the accident, and Mihaela went into a coma twice, was left paralyzed in her lower body and with a partially functional left arm. The doctors told her she had three months to live at most. “The years have passed. You cannot resign to this, but you must accept it, because if you don’t accept it, you give up mentally. I was in hospitals, I met new friends there and on Facebook too. Wherever I go, I try to motivate my friends who are in a wheelchair. This is what matters, to help and support each other. Behind a smile, there isn’t always happiness. I have loads of problems, but it doesn’t help me if I let others see that. I like to dance. When I feel that I have too much negativity, I turn on the music.” Mihaela has additional expenses related to equipment, vitamins, and recovery services that need to be covered. “In Romania, the government doesn’t help you very much. We do recovery at home, my father has adapted, learned the moves. It is what it is; we don’t afford going to a hospital. How can I go to a hospital if they charge half my pension?” Social Protection 4 Social protection IN SHORT What are the rights of persons with disabilities? Persons with disabilities are entitled to a decent standard of living. NEEDS BASIC , health, and thing hou d, clo sin o fo g non-monetary benefits L IF E NEEDS al schoo ener IT Y li n g in g RE UN , cu io n monetary LA ED M lt u at T CO M benefits ra ip sp TO r tic l, or PAR IN pa CIPATING ts or TI iv ic re c re a t n dc i o n a l a c ti v i ti e s , a People are considered to have a fairly The state supports persons whose good standard of living when they can standard of living is inadequate through cover their basic needs (for food, the social protection system. The social clothing, health, and housing) and when protection system offers monetary they can pay all of the expenses related benefits (financial aid) and to participating in community life (such non-monetary benefits (such as auxiliary as schooling, cultural, sports or equipment or free or cheaper transport recreational activities, and civic tickets). participation in general). Disability should not be a cause of an inadequate standard of living. What are the main social protection problems in Romania? The percentage of persons suffering from severe material deprivation: In Romania, persons with disabilities 14% cannot afford, to a much higher extent, 6% to pay for basic products or services, such as rent, heating, or food, which 6% that means that they suffering from With severe With some Without severe material deprivation. disabilities disabilities disabilities 158 Social Protection In Romania the percentage of persons with severe disabilities who suffer from severe material deprivation is much higher than in most of the other EU countries. The percentage of persons with severe disabilities suffering from severe material deprivation: FINLAND 3% NORWAY SWEDEN ESTONIA 2% RUSSIA 7% IRELAND 13 % LATVIA 7 % 6% LITHUANIA 18% UNITED KINGDOM BELARUS 5% POLAND 6% 6% GERMANY 3% 18% CZECH REPUBLIC UKRAINE 10% SLOVAKIA AUSTRIA 5% FRANCE 5 % 4% SWITZERLAND 9% HUNGARY ITALY 10% SLOVENIA ROMANIA MOLDOVA 5% CROATIA 14% PORTUGAL 14% BOSNIA & HERȚEGOVINA SERBIA 6% BULGARIA SPAIN MUNTENEGRU KOSOVO 18% 6% NORTH MACEDONIA ALBANIA GREECE 8% CYPRUS 4% 4% This analysis of the situation in Romania has indicated two major problems: The limited access to poverty reduction programs aimed at the general 1 population Persons with disabilities face barriers to obtaining the benefits that are provided to all poor people. The limited coverage by existing programs of the additional costs related 2 to disability The financial and other support provided by the state to cover the additional costs related to disability are not sufficient. 159 Social Protection 4 Social protection Persons with disabilities must have equal access to an adequate standard of living. All citizens have an equal right to an adequate standard of living that enables them to meet both the basic needs of daily life (food, clothing, health, and housing) and the expenses necessary to actively participate in all aspects of community life (such as education, employment, leisure, or civic participation) under equal conditions and not influenced in any way by disability or other specific situations of vulnerability. The lack of equal access to an adequate standard of living breeds social inequity and a failure to fully include individuals in society (on the labor market, in the education system, and in all other spheres of life). Under these conditions, the social protection system must intervene. It incorporates intervention tools such as financial and non- financial benefits that should enable persons with disabilities and their families to enjoy an adequate standard of living. To achieve the goals of equity and social inclusion, governments must ensure that persons with disabilities have access to the relevant social protection schemes, adapted to their needs. In Romania, persons with severe disabilities are more than twice as likely as others to suffer from severe material deprivation. The rate of severe material deprivation363 is one of the most relevant indicators for measuring a household’s standard of living, as it expresses the inability of that household to afford a minimum number of goods and services that are desirable or even necessary to live. Romania has some of the highest levels of severe material deprivation in the European Union, both among the population as a whole and among persons with severe disabilities (see Figure 18). In 2018, 14 percent of persons with severe disabilities suffered from severe material deprivation, while the proportion was only 6 percent for persons with some or without disabilities (see Annex-Table 25). While persons in rural areas or small towns or those with lower levels of education generally tend to experience higher rates of severe deprivation, persons with severe disabilities who belong to these categories are badly affected (for example, 17 percent of those in rural areas suffer from severe material deprivation). Although severe deprivation seems to have gradually decreased among Romania’s general population, it has remained unchanged for persons with severe disabilities. 363 The indicator measures the percentage of population that meets at least four of the following nine criteria: (i) cannot afford to pay rent, loan installments, or utility bills; (ii) cannot afford to keep their home properly heated; (iii) are faced with unexpected expenses; (iv) cannot afford to eat meat or other proteins frequently; (v) cannot afford to go on an annual holiday away from home; (vi) cannot afford to buy a TV set; (vii) do not have a washing machine; (viii) do not have a car; and (xix) do not have a telephone. The indicator distinguishes between persons who cannot afford a particular item or service and those who do not have the respective item or service for other reasons; for example, because they do not want or need it. 160 Social Protection FIGURE 18 Severe material deprivation rate for EU countries, 2018 (percent) Bulgaria 9 18 Lithuania 5 9 18 Croatia 3 7 14 Romania 6 14 Latvia 3 7 13 Czech Republic 3 4 10 Slovenia 1 5 10 Hungary 3 7 9 Greece 7 8 Estonia 1 3 7 Ireland 2 4 7 Belgium 3 6 Denmark 1 6 Poland 2 4 6 Portugal 2 4 6 Spain 3 5 6 Austria 1 2 5 Italy 4 5 Netherlands 1 5 Slovakia 3 5 Cyprus 1 2 4 France 2 3 4 Malta 1 3 4 Finland 1 2 3 Luxemburg 1 3 Sweden 0 2 3 Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: Calculations made by the World Bank using EU-SILC 2018 data for European Union countries except for Germany. 161 Social Protection The standard of living of persons with disabilities is lower than that of the population without disabilities, for two main reasons: 1. Family income is often significantly reduced after a family member acquires or is born with a disability. Often, persons with disabilities lose their jobs or remain unemployed, or family members have to give up work to care for them, both of which negatively impact household income. This financial vulnerability would be offset if these households had the same easy and non-discriminatory access to social protection programs as Romania’s general population. 2. The additional costs related to disability can significantly increase a family’s financial needs. In the absence of any targeted programs for persons with disabilities in need, this additional spending can cause families to fall into poverty, even those with higher levels of income. Consequently, in this chapter we will analyze two main problems: 1. The limited access of persons with disabilities to poverty reduction programs aimed at the general population. 2. The limited coverage by existing programs of the additional costs related to disability. 162 Social Protection 4.1 4.1 The accessto limitedaccess Limited povertyreduction topoverty reductionprograms IN SHORT programs aimed aimed at the at the general general population population What are the rights of persons with disabilities? In Romania, there are three main categories of benefits for poor families: the guaranteed minimum income, the family support allowance, and the heating allowance. Persons with disabilities should not experience any difficulty in receiving any of these benefits when they need them. What is the situation in Romania? The poverty rate in 2018: 21% The poverty rate for persons with 24% severe disabilities is much higher than 32% for persons without disabilities. Without With some With severe disabilities disabilities disabilities What are the causes of this problem? NTEED Benefits for poor families are granted to those GUARA UM MINIM INCOM E with incomes that are below a level set by law. In Romania, persons with severe or accentuated degree of disability receive a monthly allowance that should cover their specific needs. Because this allowance is often wrongly factored into the family’s income in 386,820 the calculation of their eligibility for benefits, poor families that include members with beneficiaries disabilities often cannot receive the only poverty-related benefits that they need. 126 persons with severe disabilities In July 2020, only 126 persons with severe only disabilities and 1,503 with high disabilities 1,503 persons with high received the guaranteed minimum income disabilities (out of a total of 386,820 beneficiaries). 163 Social Protection The family support allowance is granted only if the child with disabilities attends school or if a county-level committee (Secretariat of the Child Protection Committees within the General Directorates for Social Assistance and Child Protection) declares that the child “cannot be enrolled in any form of education.” This way of viewing children with disabilities is wrong. Children with disabilities have a right to education and can be enrolled in all forms of education, but the schools and communities in which they live rarely have the kind of adaptations that would allow them to do so. In such cases, they cannot go to school even though they would like to do so. FORM Persons with disabilities need to be able to read and understand the forms and instructions for obtaining state benefits, which are currently very long, written in small print, and difficult to understand. Many persons with disabilities find it difficult to get to the mayoralty offices where they have to go to apply for the benefits. 34 /445 mayoralties accessible for persons with disabilities In 2019, only 34 of the 445 mayoralties in rural areas inspected by the National Agency for Payments and Social Inspection (NAPSI), were accessible for persons with disabilities. What are the key changes that need to be made? The legislation should be changed so that the disability allowance received by persons with disabilities is not added as an income on the means testing, which can lead to their exclusion from benefits for poor families. All families of children with disabilities who do not go to school and are not assisted by the state should receive family support allowances. Forms that persons with disabilities must fill in to claim social benefits should be simplified, as well as the information that explains the eligibility conditions for receiving such benefits. 164 Social Protection 4.1 Limited access to poverty reduction programs aimed at the general population Social protection programs aimed at reducing poverty should be planned, implemented, and then monitored to ensure the inclusion of persons with disabilities.364 In Romania, there are three main financial support programs that have the specific purpose of reducing poverty. The guaranteed minimum income (GMI) is a means-tested benefit calculated as the difference between the minimum income threshold that defines poverty and the monthly net income of the household. About 170 thousand families in Romania benefited from the GMI in the first quarter of 2020. The Family Support Allowance (FSA) is another program that provides financial benefits to every child in low-income families, specifically defined by law, and 164 thousand families benefited from this program in the first quarter of 2020. The heating allowance, the third program, has the highest coverage and is a progressive benefit granted depending on a family’s income and type of heating. In 2019, over 240 thousand families benefited from this program.365 All these programs, which are designed to reduce poverty in Romania, must be applied so as to eliminate any barrier that could prevent persons with disabilities from accessing them. Description of the problem In Romania, persons with severe disabilities are at a higher risk of poverty than other persons. Social protection benefits (social insurance and social assistance)366 should reduce the income gap between persons with and without disabilities.367 In Romania, even though the difference between poverty rates for persons with and without disabilities is significantly smaller than it would have been in the absence of all social protection benefits, it does not disappear after social protection benefits are factored into the equation. While in 2018, the relative poverty rate was 21 percent for persons without disabilities, it was 32 percent for persons with severe disabilities. Women with severe disabilities and persons from small towns or rural areas are characterized by a higher poverty rate regardless of their disability, but are even more likely to fall into poverty if they have a disability (see Annex-Table 26). This section examines several possible factors that, if addressed, could narrow the poverty gap between persons with and without disabilities as a result of social benefits. 364 The vision and key aspects to be addressed with regard to the social protection system are based primarily on Articles 28 and 19 of the CRPD. 365 In 2016, a new program—the minimum inclusion income (MII)—was adopted by law to strengthen these three benefits, aimed at increasing generosity and targeted support for those in need, and stimulating employment in the formal sector. Despite the enactment of the law, its implementation has been repeatedly delayed. The law on the MII is not currently implemented. 366 Social assistance benefits include both means-tested benefits and benefits targeted to specific groups of people, such as children or persons with disability certificates. 367 Moreover, in a society with effective mechanisms for insuring the welfare of persons with disabilities, the poverty rate measured using survey data should be lower for persons with disabilities, as part of their income is intended to cover not only basic expenses, but also the extra cost of disability. Two persons, one with disabilities and the other without, with the same income, are objectively at different levels of poverty because part of the income is used by the person with disabilities to offset the additional expenditures that disability imposes. For a discussion about the hidden cost of disability, see Mitra et al. (2017a). 165 Social Protection FIGURE 19 Relative poverty rate before and after social transfers, 2018 (percent) Relative poverty rate before the social transfers Relative poverty rate after the social transfers 28 % 21% 58% 24% 71% 32% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: Calculations made by the World Bank using EU-SILC 2018 data. Explanation of the problem The social assistance benefits based on means testing discriminate against persons with disabilities by including benefits intended to cover only the additional expenses related to disability in the calculation of family income. The access of persons with disabilities to the three means-tested benefits is significantly restricted by the fact that the monthly disability allowance368 that a person with accentuated or severe degree of disability benefits from (hereafter referred to as the “disability allowance”) is not exempt from the calculation of the net income of persons with disabilities.369 Single persons with a severe or accentuated disability certificate are not eligible for the GMI because their monthly disability allowance (of RON 350 and RON 265, respectively) exceeds the maximum value of this benefit for 2020 (RON 141.5). Administrative data indicate that, out of almost 400 thousand GMI beneficiaries in July 2020, only 1,600 were persons with a severe or accentuated disability certificate, representing only 0.4 percent of the beneficiaries.370 Large families are more likely to be beneficiaries of the GMI. Persons with severe or accentuated disability certificates face the same issue of losing access to benefits or receiving reduced benefits in the case of the FSA and the heating allowance. Number of persons with a severe or accentuated disability and of families TABLE 4 with such members receiving the GMI, July 2020 Persons benefiting from the GMI Number Percentage Total 386,820 100 With a severe disability 126 0.03 With an accentuated disability 1,503 0.4 With a severe or accentuated disability 1,629 0.42 368 Pursuant to Law no. 448/2006, Art. 58. 369 According to GEO no. 93/2016, which simplified the granting of certain social protection benefits, as well as establishing certain budgetary measures for these benefits. 370 During the first quarter of 2020, 680,372 persons with severe or accentuated disability certificates received a disability allowance, which would represent about 3.6 percent of the total population of Romania. The percentage of persons with such a certificate among GMI beneficiaries is likely to be higher given that they are generally more likely to suffer from poverty. 166 Social Protection Number of families with at least one Total Families benefiting from the GMI member with a severe or accentuated Percentage number disability 1 person 77,939 140 0.2 2 persons 33,522 175 0.5 3 persons 19,346 385 2.0 4+ persons 36,546 880 2.4 Total 167,353 1,580 0.9 Source: Calculations made by the World Bank using NAPSI data. Means-tested benefits should not discriminate because of the conditionalities that they impose.371 Most often, the approach to means-tested benefits is to provide financial support to families in return for their adherence to certain conditionalities related to employment, education, or health. Therefore, the government must ensure that there are no barriers that may prevent persons with disabilities from fulfilling the conditionalities. If the environment is not conducive to the person with disabilities being able to meet the conditionalities (for example, lack of accessibility or support), then the program must explicitly ensure that the person is not thereby excluded from the program. The school attendance condition imposed by the FSA is not adequate for the situation of children with disabilities. The amount of the FSA received by a family is determined by the number of children and the family’s income. For those families who have children of school age, the benefit is conditional on the children attending school, which is verified every school semester by checking the number of days of school they have missed. In the case of children with disabilities, this conditionality may be waived if the parent presents the child’s disability certificate and if the Secretariat of the Committees for Child Protection within the local GDSACP certifies that the child cannot be enrolled in any form of education provided for by law.372 However, this approach is not adequate for several reasons: 1. All children, regardless of their disability, have the right to be included in a form of education, even at home (with extremely rare exceptions in the case of severe disabilities). The participation of children with disabilities in the educational process is not prevented by their functional limitations but by the physical, informational, or attitudinal barriers existing in the education system or community. Consequently, any assessment of the child’s needs (see below) should not indicate whether the child can be enrolled in a form of education, but whether environmental factors are preventing the child from being enrolled in a form of education. 2. When the GDSACPs issue to Mayoralties the evidence that confirms a child cannot be enrolled in a form of education as foreseen by law, they do not assess a child’s environment or the type of support the child needs and receives in order to pursue a form of education, nor do they intend to do so. Although the County Centers for Resources and Educational Assistance (CCREAs) are in a position to perform such a detailed assessment because of their interactions with the child, her/his family, and the local schools, they play no role in verifying the conditionality for the FSA. 371 IDA and ILO (2019: 9). 372 GD no. 38/2011 on Methodological regulations of January 19, 2011, for the application of the provisions of Law no. 277/2010 regarding the family support allowance, Art. 8 para. (8). 167 Social Protection 3. There are children who have no certificate of disability but have special educational needs (SEN), but the education system does not provide them with the support they need to attend a form of education. These children are excluded not only from the education system but also from the material support provided through the FSA because, in the absence of services, they drop out of school or do not attend any form of education and, consequently, do not meet the conditionality. Consequently, the conditionality should be waived for children with SEN who, for reasons not attributable to them or their families, have not received the support they need in order to attend school. The information and communications about social protection benefits should be accessible, but in practice, this is not the case. Anyone claiming a benefit has the right to receive the information in a way that is adapted to that person’s level of understanding. At a minimum, the eligibility conditions should be simple and clear so that everyone can understand whether they qualify for such benefits, and the forms should be made accessible to persons with difficulties reading or understanding written documents. For example, the single form for granting the three benefits based on means testing does not meet the necessary elements for accessibility. It consists of 17 pages of text in small font, which makes it impossible for persons with visual impairments to read, and is generally difficult to follow and understand. Consequently, the form should be made accessible by keeping only the questions necessary for granting the benefit, improving the flow of questions addressed to potential beneficiaries, simplifying the explanations of the benefit, and providing the visual elements necessary for persons with visual impairments to fill in the form. This should be done for all social protection benefits (for an example of good practice in this regard, see Box 27) Ensuring the accessibility of information needed by persons with disabilities BOX 27 from the UK Department for Work and Pensions The UK Department for Work and Pensions has aimed to make relevant information accessible to persons with disabilities by transposing it in an easy-to-read and understandable format. In this endeavor, the department has set up a team of professionals responsible for making all public materials accessible. The text of the brochures, websites, and materials aimed at the general public has been simplified and is now accompanied by icons and images. The text appears on the left and the image on the right so that the image graphically illustrates the written message. Care was also taken to turn complex information into simple, concise, clear, and easy to understand messages. The initiative helped not only persons with disabilities whose ability to understand written text was affected, but also those who did not know English well. Finally, the beneficiaries of such information confirmed that the messages have become more comprehensible, and stated that this showed that the department cared about them. As a result, information about the help available for persons with disabilities reached a wider audience of this group, thus enabling more of them to avail themselves of their rightful benefits. Source: Railton (2019). 168 Social Protection The physical infrastructure of the buildings and offices associated with the provision of social protection benefits must also be accessible so that persons with disabilities are able to claim their benefits without any restriction. In 2019, only 34 of the 445 mayoralties (under which the Public Social Assistance Services that manage these benefits function) in rural areas inspected by NAPSI were found to be accessible in all of the items examined by the social inspection team.373 Even if the buildings themselves had been made accessible, it was often not possible for some persons with disabilities to reach the Mayoralty to claim their benefit because of accessibility challenges faced along their route, in means of transportation, and in public spaces. Furthermore, some persons with disabilities live alone and receive no material or non-material help from any other person.374 Under these conditions, it is essential for the social assistance system to be able to identify vulnerable persons, actively reach out to them, and facilitate their access to the programs for which they are eligible. Recommended measures The following measures are recommended: 1 The Ministry of Labor and Social Protection (MLSP) to amend the legislation on means testing-based poverty reduction programs for the general population so as to exempt the monthly allowances received by persons with disabilities under Law no. 448/2006375 from the calculation of the household’s net income, and to amend the provisions on the FSA in order to exempt from the conditionality any children with SEN and/or a disability certificate who do not receive the necessary support to attend a form of education. 2 The MLSP and National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to make accessible the forms necessary to apply for social benefits and information on eligibility conditions. 3 The MLSP and NARPDCA to establish a procedure to support persons with disabilities or their families to access poverty reduction programs, including for solving related problems (such as obtaining the necessary documents). 373 The inspection campaign focused on the following accessibility items: adapted, reserved, signaled parking, or without parking space; accessible path to enter the building; accessible access ramp or with no need for a ramp; accessible entrance to the building; accessible hallways; accessible interior doors; accessible reception counter/office or with no counter; accessible elevator/lifting platform/sidewalks or escalators or with no need for them; accessible bathrooms; accessibility of information and communications. 374 For example, according to EU-SILC data, in 2018, 29 percent of the persons with severe disabilities said that they did not feel that they could receive non-material support if they needed to. 375 The monthly disability allowance foreseen in Art. 58. 169 Social Protection 4.2 4.2 limited coverage TheLimited coverage by by existing existing programs of the programs of IN SHORT the additional additional costs costs related related to disability to disability What are the rights of persons with disabilities? Persons with disabilities have higher expenses than those without disabilities precisely because of the additional costs related to disability. The amount of expenses generated by the disability depends on the severity and type of the disability, on the age of the person, and on the place where the person works or lives. Regardless of their level, the state should provide persons with disabilities with enough benefits to cover these expenses. What is the situation in Romania? The percentage of persons that can afford their current necessary expenses only with great difficulty Persons with disabilities, especially 11% those with severe disabilities, are more 15% likely to encounter difficulties in affording their necessary daily 29% expenses. Without With some With severe disabilities disabilities disabilities What are the causes of this problem? Total sum spent on disability-related social The benefits and services are provided protection benefits (percent of GDP) based on the way in which disability is 2.1% 2.1% assessed. In Romania, disability is largely assessed on the basis of a person’s 1.5% medical diagnosis. 0.9% 2009 2017 UE-27 average Romania In Romania, social benefit expenditures on persons with disabilities have decreased significantly over time. The absolute level of these expenditures is very low compared with the other countries of the European Union and this gap has increased with time. 170 Social Protection The benefits provided by the state vary between different disability degrees, but not between disability types or the different needs of persons with disabilities. The disability allowance plus the complementary personal budget have a cumulative value of only RON 500 per month for persons with a severe disability and only RON 272 per month for with an accentuated disability, regardless of the disability type and the barriers that prevent them from participating in society. Many persons with disabilities do not have the assistive equipment and devices that they need, usually because they do not have the money to buy them. The percentage of persons with disabilities who... Do not use assistive Do not use them because equipment and devices they cannot afford to as a Need them among those who need them share of the total number of people who do not use them Prostheses 9% 33% 77% Hearing aids 14% 54% 64% Manual wheelchair 13% 39% 87% BANK Changing certain features of residential accommodation to make it more suitable to the needs of persons with disabilities would enable many of them to live on their own. In Romania, there is a program that offers loans to persons with disabilities to enable them to make changes to their houses or to change their car. However, few persons with disabilities take advantage of these loans because their income is too low to afford the monthly installments and because this program is not well known. Between 2016 and 2020, only approximately 1,000 persons benefited from this program each month. What are the key changes that need to be made? It is necessary to improve the way in which disability is assessed, particularly by taking into account the barriers faced by the person with disabilities in order to participate fully in society. The additional expenses incurred by persons with different types of disabilities should be quantified according to their individual needs, and the level of social benefits that they receive based on this analysis should be revised. It is necessary that the state covers the cost of the auxiliary equipment considered to be very important by the World Health Organization, at a minimum. 171 Social Protection 4.2 Limited coverage by existing programs of the additional costs related to disability Disability usually involves specific additional costs that need to be covered in order for the person to be able to live fully in society. International studies376 have shown that the extent of these additional costs generated by disability vary depending on factors such as: (i) the severity and type of disability; (ii) the composition of the household in which the person with disabilities lives; (iii) the age of the person with disabilities; (iv) habilitation or rehabilitation services that the person can access in his locality; (v) the person’s lifestyle; or (vi) the person’s occupation. For existing benefits, these costs are either not covered at all, leading to a deterioration of the person’s health, or are offset by a reduction in other expenses that the person has to incur to live a full life. Description of the problem More persons with severe disabilities find it very difficult to pay their absolutely necessary expenses compared to those without disabilities, given the costs of disability and their lower incomes. In the World Bank survey of persons with and without disabilities, one-third of the persons with severe disabilities stated that they manage to pay their absolutely necessary current expenses with great difficulty, while the percentage is almost three times lower for persons without disabilities. Among the poorest 20 percent of the population, the situation is no different: about 46 percent of those with severe disabilities manage to pay their absolutely necessary current expenses only with great difficulty, while the level is only 27 percent for those without disabilities. While, in the case of poverty, the level of education might explain such differences depending on the presence or absence of the disability (people with the same level of education had relatively similar incomes regardless of their type of limitation), persons with disabilities barely cover their expenses, regardless of their level of education (in other words, their additional expenses are not offset, regardless of their income) (see Annex-Table 27). Also, the differences between persons with and without disabilities in terms of difficulty in paying their current essential expenses are maintained regardless of their level of income. Romania ranks fourth from the bottom of EU countries on this indicator. Percentage of persons living in households that manage to pay their absolutely FIGURE 20 necessary current expenses only with great difficulty by level of income, 2018 (percent) The poorest 20% (Q1) 27 30 46 Q2 20 22 42 Q3 15 17 37 Q4 8 12 24 The wealthiest 20% (Q5) 5 8 10 Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: Calculations made by the World Bank using EU-SILC data. 376 Mitra et al. (2017b); WHO and World Bank (2011); Smith et al. (2004). 172 Social Protection Explanation of the problem This section examines how the disability assessment mechanism (which is usually the first step in granting the benefits) works, and whether the various financial or non-financial benefits (allowances, assistive technologies and equipment, or loans to adapt the dwellings or means of transport) fully meet the purposes for which they were designed. The existence of a disability assessment system that considers how the individual functions in society The international literature is clear that a disability assessment should take into account the full experience of disability that is lived by a person.377 This assessment should be developed and implemented using the International Classification of Functioning, Disability, and Health (ICF) and in accordance with the CRPD. The ICF is a framework for organizing and documenting information on functioning and disability, where functioning is defined as the dynamic interaction between a person’s health, environmental factors, and personal factors. The countries that have signed and ratified the CRPD are in the process of reviewing their disability assessment systems to ensure that they comply with the CRPD, and frequently use the ICF as a basis for their reforms. The CRPD Committee regularly recommends378 that countries that have ratified the Convention to examine the way in which they conduct disability assessment to ensure that countries comply with the articles of the CRPD, especially that the assessment should be based on a human rights approach.379 According to current legislation, disability assessment and determination in Romania are based on a medical-psychosocial model, but in practice they mainly follow a medical model. Law no. 448/2006 establishes that the certification of a degree of disability is carried out on the basis of medical-psychosocial criteria, and sets the role of the assessment committees for adults with disabilities as well as the complex assessment service. Order no. 762/1992 of August 31, 2007, with its subsequent amendments and completions, approves the medical-psychosocial criteria, which cover: (i) the functional dimension (medical criteria); (ii) the person’s activities and limitations; and (iii) the person’s participation and needs. The first dimension regarding the medical criteria is organized in eight chapters, with the reference element being the diagnosis. The other two dimensions are treated superficially, while their purpose should be to identify the needs of persons with disabilities and the services that they would require to participate fully in society. Thus, disability assessment in Romania has a strong medical emphasis and neglects the dimensions related to activities and participation. The current disability assessment system in Romania involves several institutions at different levels. At the local level, social workers or the social assistance departments in the mayoralties’’ offices of the localities where persons with disabilities live are responsible for carrying out a social inquiry as part of the file submitted by persons 377 Bickenbach et al. (2015). 378 For an analysis on how the CRPD should be reflected in the disability assessment and for a selection of the CRPD Committee’s recommendations in this regard for different countries, see Cote (2018). 379 “The assessment should be based on a human rights approach to disability, focus on the requirements of the person because of barriers within society rather than the impairment, take into account and follow a person’s will and preferences, and ensure the full involvement of persons with disabilities in the decision-making process.” (CRPD Committee, 2017). 173 Social Protection interested to be assessed.380 At the county level, the Complex Assessment Services (CASDA), which are part of the GDSACPs, are responsible for verifying and reviewing the applicant’s file, performing the disability assessment, and making a recommendation related to the person’s type and degree of disability.381 The Committee for the Assessment of Adults with Disabilities (CAAD) is a specialized body at the level of the County Councils382 that makes the final decision about the degree and type of disability.383 The Higher Committee for the Assessment of Adults with Disabilities (HCAAD) ensures the methodological coordination and monitoring disability assessment activities. The NARPDCA develops, implements, and monitors the disability assessment system. To date, there has been no comprehensive evaluation of the disability assessment system. Key institutions at the county level have very limited capacity (knowledge and tools) to carry out a disability assessment, except for the medical component. The CASDA and CAAD staff do not receive any nationally held trainings, instructions, or standards, so there is no unified and comprehensive approach to disability. Moreover, even though Art. 48 of GD no. 268/2007 states that the assessment should have six mandatory fields that should be carried out by experts with different specializations, there is no tool or methodology for conducting it.384 Therefore, each assessment committee and service has developed its own working tools, all of which are focused largely on the medical model. There is no clear methodology for recording, implementing, or monitoring the measures proposed in the key tools used for identifying what services are needed by persons with disabilities. According to Law no. 448/2006, there are two main tools for identifying services needed by for persons with disabilities: (i) the Individual Rehabilitation and Social Integration Program (IRSIP)385 and (ii) the Individual Services Plan (ISP).386 Although these tools are essential to ensure consistency between what a person needs, how they want to live their life, and the type of support received, the legal framework does not include any methodology for supplementing such tools or for implementing and monitoring the actions provided for in the tools. According to anecdotal information, these tools are sometimes superficially filled in, and social workers and case managers do not use them as much as they should. 380 The social survey includes: data about the person assessed; data regarding the legal representative; a section on autonomy that highlights the functional status of the person (daily activities, instrumental activities); an assessment of the person’s sensory and psycho-affective status; a social assessment in terms of housing, family network, friends and neighbors, and economic situation. Finally, the survey presents the needs identified and the corresponding offer of services that can cover them, followed by conclusions and recommendations. 381 CASDA staff includes multidisciplinary teams (social workers, specialized physicians, psychologists, psychopedagogue, education trainers or recovery educators, kinesiotherapists). According to the law, the multidisciplinary teams must make home visits to assess the persons with disabilities who cannot be transported for the assessment. CASDA prepares the Comprehensive Assessment Report and the Individual Service Plan. 382 Respectively, local councils for the sectors of the Municipality of Bucharest. 383 The Committee has five members: a physician specialized in occupational medicine, internal medicine, family medicine, or a general practitioner (chair), a physician specialized in occupational medicine, family medicine, or a general practitioner, a psychologist, a social worker, and a representative appointed by the NGOs that carry out activities for the benefit of persons with disabilities. There is no analysis to show how many of the recommended professionals actually participate in the assessments conducted on a daily basis. CAAD issues the certificate indicating the degree and type of disability and prepares the Individual Rehabilitation and Social Integration Program. 384 “The mandatory fields covered by the assessment are: (a) social assessment, conducted by social workers, (b) medical assessment, conducted by specialized physicians, (c) psychological assessment, conducted by psychologists, (d) occupational or professional skills assessment, conducted by psychopedagogues, education trainers or recovery educators, (e) assessment of the level of education, conducted by psychopedagogues, education trainers or recovery educators, (f) assessment of the skills and level of social integration, conducted by psychologists, psychopedagogues, recovery educators or social workers” (GD no. 268/2007, Art. 48). 385 IRSIP: “Document prepared by the committee for the assessment of disabled adults, which specifies the activities and services that disabled adults need in the social integration process” (Law no. 448/2006, Art. 5). 386 ISP: “Document setting short, medium and long-term objectives, specifying the means of intervention and support for disabled adults, through which the activities and services specified in the individual rehabilitation and social integration program are carried out. (Law no. 448/2006, Art. 5). 174 Social Protection Although it is possible to legally contest in court the results of a disability certificate, the court system is not prepared to elaborate on their ruling. In 2017, an amendment to Law no. 448/2006 was passed, allowing persons to legally challenge in court the disability certificate results. However, in practice, judges do not have the necessary knowledge to make informed decisions, nor do they have any access to expert opinions (which would ideally be multidisciplinary, presenting the perspective of physicians, psychologists, and social workers). Even if judges seek support from the HCAAD, there are too many cases to adjudicate, which results in judges making decisions based on a high degree of subjectivity. Ensuring adequate financing for the benefits for persons with disabilities In Romania, social protection expenditures for persons with disabilities have decreased significantly over time and are very far behind the amounts spent in other EU countries. In 2017, Romania’s total social protection expenditures as a proportion of its GDP were almost half of the average for the EU as a whole (14.1 percent compared to 26.9 percent). The percentage of disability-related social protection expenditures within the country’s GDP dramatically decreased by almost 40 percent (from 1.5 percent to 0.9 percent) between 2009 and 2017, reaching a level less than half the EU average. The share of disability expenditures compared to other social protection expenditures has decreased significantly over time – from 9.4 percent of total social protection expenditures in 2009 to 6.4 percent in 2017. Disability-related social protection benefits, 2009–2018 FIGURE 21 Total social protection benefits (percentage of GDP) Romania 14.1 16.1 UE-27 26.9 27.5 Disability-related benefits (percentage of GDP) Disability-related benefits as a percentage of the total social protection benefit expenditures Romania 0.9 1.5 România 6.4 9.4 UE-27 2.1 UE-27 7.2 7.3 Benefit amounts in € per capita (at constant prices since 2010) Total social protection benefits Total disability-related social protection benefits Romania 1,039* 1,214 Romania 79 99 UE-27 6,762 7,336 UE-27 510 562 2009 2017 Source: European System of Integrated Social Protection Statistics (ESSPROS). Note: * This means that €1,039 were spent in Romania in 2009 at constant prices since 2010. Between 2009 and 2017, there was an increase of 17 percent in real terms of the amounts spent per person on social protection benefits in Romania. 175 Social Protection Social protection expenditures are also very low in real terms in Romania compared to the EU, especially for benefits other than regular monetary ones. Annex- Table 28 shows spending on the social protection of persons with disabilities using the purchasing power standard (PPS), which allows for a comparison in real terms between countries.387 In general, in Romania, these expenditures are three times lower than the average for the other EU countries. In fact, this ratio of one to three applies only to expenditures on disability pensions and other regular financial benefits, but for all other types of benefits, the gap is much wider. For example, as regards the periodic benefits for the economic integration of persons with disabilities, the ratio is over 1 to 100 (Romania spends 0.5 PPS per capita, while the EU average is 49 PPS). For in- kind benefits such as the costs of accommodation/residential services, rehabilitation, or support within the household, the actual ratio between expenditures in Romania and the EU average is one to seven. Annex-Table 29 shows that there have been virtually no increases expressed in constant prices over time in any of these benefits in Romania, except in the case of the in-kind benefit for support around the household. In Romania, there are several monetary benefits that are meant to cover a large portion of the additional cost of disability. The main monetary benefits are provided for in Art. 58 of Law no. 448/2006. Children with disabilities, including those with HIV/AIDS, receive double the amount of the child allowance as children without disabilities. Children with HIV/AIDS receive a monthly food allowance, the amount of which is calculated on the basis of the daily food allowance set for collective consumption in public medical facilities. Adults with severe visual impairments receive an allowance for their caregivers equivalent to the net salary of an entry-level social worker with a secondary education degree working in the social assistance institutions of the budgetary sector other than institutions that offer accommodation. Adults with a disability certificate receive a monthly disability allowance and a monthly complementary personal budget, regardless of their income, that is differentiated by degree of disability (for a description of the benefits, see Annex-Table 30). The parent, guardian, or person caring for and raising the child with disabilities on the basis of a special protection measure benefits from social benefits, during the period in which the child is under care and supervision. The social benefits currently granted to persons with disabilities at present have fixed values and are not adapted to each individual’s specific needs. The monthly disability allowance and the complementary personal budget have a cumulative value of RON 500 for persons with severe disability certificates or RON 375 for persons with accentuated disability certificates, regardless of the type of disability and the other specific needs of each of these persons. These benefits, based on the average needs of the entire population with disabilities, are not currently set in accordance with a rigorous analysis of the additional costs of disability in Romania. Therefore, in the future, the size of the benefits should be estimated and updated following a systematic analysis of quantitative and qualitative data for persons with different types of disabilities and living in different environments. Box 28 provides examples of this type of analysis from different countries. 387 The purchasing power standard is an artificial common currency used in the EU to eliminate price differences between countries. A PPS allows a person to buy the same quantity of goods and ser-vices in all EU countries. 176 Social Protection BOX 28 Calculating the additional costs related to disability There are different ways to calculate the additional costs related to disability. One of the main methods is to monetize the goods and services “that persons with disabilities deem necessary, comparing the real spending patterns of persons with and without disabilities and using econometric techniques” (Mitra et al., 2017b: 43). Another method is the standard of living approach, which measures the additional costs of disability by calculating the difference in goods and services purchased by households that do and do not include persons with disabilities. This method considers the goods that families actually purchase, not those that they would ideally need to purchase. In some countries, the additional costs of disability are periodically monitored to inform the appropriate adjustment of monetary benefits. For example, in Spain, living conditions surveys (on a sample of over 12,100 households) measure the level of expenditures incurred by persons suffering from chronic deficiencies or activity-limiting illnesses compared to the level of expenditures of the rest of the population disaggregated by age or other socio-demographic characteristics (Brana and Anton, 2011, quoted in Mitra et al., 2017b). In Ireland, large-scale household surveys use the standard of living approach to assess the additional cost of disability (Mitra et al., 2017a; Cullinan et al., 2011, quoted in Mitra et al. 2017b). In China, the national survey on persons with disabilities also uses the standard of living methodology to analyze the types of expenditures that they incur (Loyalka et al. 2014, quoted in Mitra et al., 2017b). Other countries (such as Canada, New Zealand, and the US) use quantitative (descriptive or explanatory statistical analysis models or regressions) or qualitative (including focus groups) measurement and analysis methods to review and make predictions about the spending patterns of persons with disabilities (Mitra et al., 2017b: 478). Persons with disabilities benefit from certain tax exemptions, but these are not adequate mechanisms to prevent them from slipping into poverty. Law no. 227/2015 on the Fiscal code created a series of tax concessions for persons with disabilities, such as: (i) an exemption of their salaries and wages from the income tax, independent activities, pensions and agricultural activities; (ii) an exemption from paying taxes for the building in which the person with disabilities resides and its land where applicable; and (iii) an exemption from paying taxes on means of transportation. The income tax and property tax exemptions are compensatory measures useful only in the short term and in the absence of other functional social protection mechanisms, as the tax exemption takes a charitable perspective toward disability instead of simply covering the additional cost of disability.388 Providing assistive devices and technologies that persons with disabilities need Some of the most important but also significant expenditures incurred by persons with disabilities are those on assistive devices and technologies. Assistive devices and technologies are necessary to maintain or improve the functioning and independence of an individual, to facilitate their participation in society, and to increase their level of general well-being. They can also help to prevent medical conditions and health problems. They cover any equipment, system, or design used by people to perform tasks that might otherwise be difficult or impossible, such as wheelchairs, prostheses, hearing aids, visual devices, specialized software and hardware for the use of computers by persons with different types of disabilities or specific needs, and devices that increase the visual, auditory, mobility, or communicational capacity of a person.389 For persons with disabilities, assistive technology has a key role in enabling 388 When drafting Art. 28 of the CRPD, the issue of tax reductions was widely debated. Human rights institutes, as well as the European Disability Forum, have criticized the introduction of such measures as being associated with past periods in which disability was regarded from a charitable perspective. These organizations suggested that tax exemption should be strictly associated with covering the additional costs related to disability, in recognition of the fact that persons with disabilities are citizens with equal rights, with the same rights and responsibilities as everyone else (UN Enable 2006). 389 WHO (2016a). 177 Social Protection them to communicate and learn, to participate in the labor market or in society, and to live independently. In Romania, a considerable number of persons with disabilities cannot afford the assistive devices or technologies that they need. According to the World Bank survey of persons with and without disabilities, more than 50 percent of those who need “orthoses,” “motorized/electric wheelchairs,” “walking aids with wheels other than wheelchairs,” “hearing aids,” or “computer aids” do not use such assistive products, and for a significant proportion of them, the reason is that they cannot afford them (Figure 22). For example, one in three (33 percent) of those who need prostheses do not use them, and 77 percent of those who do not use them say that the reason is that they cannot afford to buy them. Even among the persons who need “crutches or walking frames,” 14 percent do not use them, and 54 percent of these persons cite as the reason for this that they cannot afford them. As for persons who need hearing aids, one in two (54 percent) does not use them, and 64 percent of these persons say that this is because they cannot afford them. The need for and use of assistive devices among persons with disabilities, FIGURE 22 2020 Percentage who need Percentage who do not Percentage who do not assistive devices use assistive devices of use them because they those who need them cannot afford to, as a share of the total number of persons who do not use them Glasses or aiding lenses 75% 11% 65% Orthoses 7% 42% 64% Prostheses 9% 33% 77% Other devices for the replacement, substitution or stimulation of body 20% 41% 68% organs, functions, parts Manual wheelchairs 13% 39% 87% Motorized/electric wheelchairs 8% 84% 93% Walking aids on wheels other 12% 59% 68% than wheelchairs Crutches, walking frames 34% 14% 54% Other devices for persons with reduced mobility (elevators, transfer devices, 9% 63% 71% for vertical mobility) Walking sticks 44% 7% 43% Hearing aids 14% 54% 64% Devices for navigation, guidance, identification, or recognition of the 3% 50% 86% environment Drawing and writing aids 4% 40% 90% Reading aids 12% 25% 56% Computer aids 5% 36% 44% Other devices 4% 54% 87% Source: World Bank survey of persons with and without disabilities in Romania (2020). 178 Social Protection With a few exceptions, the necessary assistive products and technologies are not covered by the National Health Insurance House (NHIH), which ensures, supervises, and controls the social health insurance system in Romania. According to the NHIH Framework Agreement, insured persons are eligible to be reimbursed for certain “medical devices.” These medical devices are “intended for the recovery of organic or functional deficiencies on an outpatient basis.”390 Because of long waiting lists, the NHIH has imposed a list of criteria for prioritizing access to the medical devices that are covered (vital, age, substitution, and social inclusion criteria).391 At the same time, the NHIH Framework Agreement does not even include a third of the list of 50 categories of priority assistive products recommended by the World Health Organization (WHO) in 2016.392 Annex-Table 31 includes the comparative list of essential assistive technologies recommended by the WHO compared to the list contained in the NHIH Framework Agreement. There are very few manufacturers and distributors of assistive devices and technologies in Romania. There is no national policy on assistive products and technologies as recommended by the WHO,393 with priority measures to meet the needs of persons with disabilities and other categories of users (such as the elderly, persons with noncommunicable diseases, chronic diseases, and their family members) and to encourage the demand for and supply of such products. Only one voucher program is available to persons with disabilities between 2018 and 2020, and only to those who were looking for a job. Providing dwelling accommodations for persons with disabilities One of the most important measures that would allow persons with disabilities to continue to live independently are dwelling accommodations. These can include the installation or construction of access ramps, the installation of handrails for support and balance, the accommodation of bathrooms to provide easier access to showers, washbasins, and toilets, the installation of non-slip mats, the removal of thresholds between rooms, the widening of doors, the installation of a guidance system with light signals for persons with hearing impairments (for example, to replace the doorbell or the landline telephone), and the adjustment of the furniture and appliances to the optimal height for wheelchair users. All these accommodations can enable persons with disabilities to continue their independent life in the community and to lead a family life as close as possible to that of persons without disabilities. In Romania, there is a loan program for adapting a dwelling or a car. According to Art. 27 of Law no. 448/2006, persons with disabilities are eligible for a loan of up to €10,000 to finance accommodations in their home or the purchase of a single motor vehicle. The interest on these loans is subsidized through transfers from the NARPDCA budget to the budgets of GDSACPs, provided that the loan installments are paid on their due dates. When purchasing motor vehicles specially adapted to transport persons with disabilities who cannot be removed from their wheelchairs, the value of the loan cannot exceed €20,000, with a repayment period of 15 years. The loan program for dwelling or car adaptation does not help many persons with disabilities because few of them can afford to pay the monthly installments on such a loan. The need to accommodate a dwelling or a car represents additional 390 NHIH, http://www.cnas.ro/casmb/page/dispozitive-medicale.html. The complete list of devices settled by the NHIH is presented in Annex-Table 31. 391 NHIH (2016). 392 WHO (2016a). 393 WHO (2020). 179 Social Protection costs related to disability. The interviews with persons with disabilities carried out within the qualitative research revealed that most banks did not consider persons with disabilities to be eligible for loans because of their low monthly income, which the banks anticipate will make it difficult for them to pay the loan installments. Moreover, persons with disabilities are not sufficiently informed about the availability of these loans. Between 2016 and 2020, the number of persons who benefited from this program remained relatively constant, around 1,000 persons (of whom only approximately 10 percent received loans for adapting their dwelling).394 A grant program, that reimburses persons with disabilities for a percentage of their accommodation costs depending on their income might work better (see Box 29 on the Irish model). Providing grants for dwelling accommodations in Ireland BOX 29 Ireland has introduced measures to support persons with disabilities or reduced mobility to adapt their housing. There are two main support mechanisms, one for making a house more accessible and another for purchasing mobility aids. The first support mechanism is called the Housing Adaptation Grant Scheme. The scheme is administered by local authorities, is based on means testing, and provides funding to applicants for works that are reasonably needed to make a home more suitable to the needs of persons with disabilities. The dwelling that is subject to the accommodations covered by the grant can also be a rented one if the owner agrees to this. A maximum of €30,000 is granted, which can cover up to 95 percent of the approved costs of the housing adaptation. The amount to be awarded differs depending on the household’s income (the gross annual income of all members of the household that includes an adult with disabilities). Full grants are given to households with an annual gross income of under €30,000 provided also that the dwelling is at least 12 months old. Households with an annual income of more than €60,000 are not eligible for this type of grant. The grant covers the installation of access ramps and chair lifts, the adaptation of toilets and showers, and any other changes necessary for the disabled person. To access the grant, a detailed form must be filled in, which is then sent to the local authority’s specialized office. An occupational therapist, whose services are covered to a certain amount from the grant, evaluates and validates the person’s requests. The Mobility Aids Housing Grant Scheme covers the purchase and installation of devices that address mobility problems that are primarily (but not exclusively) associated with aging. The dwelling that is subject to the adaptations covered by the grant can also be a rented one if the owner agrees to this. The applicant’s eligibility and the amount to be awarded are assessed based on means testing, and the maximum amount of the grant (€6,000) is granted only to households with a maximum annual gross income of under €30,000. The grant can cover up to 100 percent of the costs of the adaptations for which it is requested. It can be used to purchase handrails (grab bars), access ramps, and bathroom accessories, to adapt toilets and showers, and to install any other minor equipment that may be needed to facilitate the applicant’s mobility needs. To access the grant, a detailed form must be filled in, which is then sent to the local authority’s specialized office. As in the previous case, an occupational therapist evaluates and validates the applicant’s requests. If a household has used private services of this type, they can be reimbursed for these expenditures by the local authority as part of the grant, up to a certain amount. Source: Republic of Ireland Housing Agency (2018). The existence of an efficient disability pension system that supports the reintegration of persons with disabilities into the labor market The granting of a disability pension is based on an assessment of an individual’s decrease in work capacity. Disability pensions are paid to persons who have not yet reached the standard retirement age, have lost all or at least half of their work 394 According to NARPDCA data, in December 2016, the number of persons who had contracted loans to adapt their dwelling or car was 1,196; in December 2017, the number was 818; in December 2018, 707; and December 2019, 987. The variation among counties is high: from counties with 0 cases (Iași) to counties with 56 cases (Argeș) – for the month of December 2019. 180 Social Protection capacity, and have made contributions for a predefined period. The assessment of work capacity to establish the person’s degree of invalidity is made upon request by a physician specializing in occupational medicine within the National House of Public Pensions. These assessments are mainly medical and are not based on a bio- psychosocial approach to disability. Between 2016 and 2018, a project of the Ministry of Labor and Social Protection, funded by a grant from the Government of Japan,395 sought to combine the disability assessment system with the system used to assess work capacity (invalidity). The project aimed to introduce new assessment criteria and factors for the joint assessment system based on the ICF. Unfortunately, the project did not yield any of the results envisioned in the law, and the assessment of the work capacity remains a mainly medical process. No analysis has been done of the coordination between the disability pensions system and the social benefits system or the way in which disability pensioners are supported to reenter the labor market. First, some of the persons receiving disability pensions also receive disability-related benefits, but there has been no analysis of how these benefits overlap and how the accumulation of the benefits can create additional disincentives to enter or reenter the labor market. Second, there is no analysis by the National House of Public Pensions of the age at which persons with disabilities start to receive their disability pensions, contribute to the pension scheme, the impact of the minimum contribution period on the pension application (this can vary from a few days to a few months), or type of work disability. Third, there is no analysis of the effectiveness of recovery programs for disability pensioners in terms of their activation on the labor market and how this can be improved. Until such an analysis is carried out, it will be difficult to improve the functioning of the disability pension system and adapt its response to the needs of persons with disabilities. Dissemination of information on benefits and social services provided to persons with disabilities Information on the rights of persons with disabilities to social benefits and services is disparate, difficult to access, and often inaccessible. According to legislation, persons with disabilities are entitled to a range of benefits and services throughout their lives. However, the information on these benefits is disparate and difficult to find, being organized primarily according to the institution that grants it and then according to the law that specifies the conditions for granting it. In addition, the information available online is largely inaccessible and sometimes out of date. From this point of view, it would be useful to have an integrative platform containing accessible and constantly updated information on the benefits and services available to persons with disabilities throughout their lives.396 395 MLSP, Japanese Grant PHRD for Technical Assistance and Development to Support Persons with Disabilities, Project for Improved Policy-Making and Institutional Framework for Persons with Disabilities (TF010417). 396 See, for example, the national platform created in France (https://www.monparcourshandicap.gouv.fr/). 181 Social Protection BOX 30 Difficulties to cover additional costs related to disability “It’s a daily struggle, I make our money last, we save up to afford medicine and therapy and clothes, for him to be like other children. If I were to get a job, there would be no one there to care for the child, only I know how to care for him when he screams or shouts.” (Parent of a child with disabilities, personal assistant, Ialomița county) “Autism is a disease only parents with money can afford. Those without money lose their children, they isolate them.” (Parent of a child with disabilities, personal assistant, Bacău county) “If we add up the money and benefits that they receive plus what the parents get, it comes to around 1,500 RON. If you consider the cost of therapies… also the fact that some of them need special medical checks, special tests… I know the parent of a child with Down syndrome enrolled in mainstream education, the parent works and almost the entirety of his salary goes to pay for the assistant.” (GDSACP representative) “There is a case in our commune, the doctors have recommended an unsubsidized model of orthoses, [which cost] 1,200 RON. I bought them, through a company; neither the NHIH, nor any hospital wanted to help.” (Local authority representative, Ialomița county) “I am happy with 3 RON, that’s OK… But if those 3 RON keep me in the house only…” (Person with disabilities, Bacău county) “I am afraid to take a loan. We are at their mercy, they summon us at the commission [persons that do not have a permanent disability certificate, for reassessment] once every two years. What if they decide not to renew it [following the reassessment]? How could I have the courage to take a loan? I would fix my bathroom for example.” (Person with disabilities, Ialomița county) “We feel pretty well accepted, it’s a small town, and people know us very well. But it bothers me when someone sees my boy in his wheelchair and offers him money, especially when he is alone. He is in a wheelchair, but he has everything he needs, he lacks nothing. Everyone wants to do a good deed.” (Representative of a person with disabilities, personal assistant, Ialomița county) Source: World Bank qualitative research (February-May 2020). Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to reform the disability assessment system to base it on the medical-psychosocial model and include tools for assessing the need for benefits and services. 2 The NARPDCA to develop a methodology regarding the provision of specific expertise for the assessment of disability in the event of contestations referring to disability assessment results to be settled in court. 3 The NARPDCA, together with the Ministry of Labor and Social Protection (MLSP), to perform a detailed analysis of the specific needs of persons with disabilities to calculate the additional costs related to disability in order to establish social benefits according to needs. 4 The MLSP and NARPDCA to modify the level of social benefits for persons with disabilities to reflect the additional costs related to disability. 5 The Ministry of Health, the NHIH (National Health Insurance House), the MLSP, and the Ministry of Investments and European Projects (MIEP) to diversify the package of assistive products and technologies reimbursed from the Single National Social Health Insurance Fund (SNSHIF) or other sources to include all 50 products and technologies identified by the WHO as a global priority in 2016. 182 Social Protection 6 The NARPDCA to implement a program of grants via the General Directorates for Social Assistance and Child Protection (GDSACPs) and with the involvement of Disabled Persons’ Organizations (DPOs), to fund house or car adaptations tailored to the individual needs of persons with disabilities, or grant advances for obtaining mortgage loans. 7 The National House of Public Pensions (NHPP) to assess the method of granting the disability pension and the effectiveness of the recovery programs for disability pensioners, from the perspective of their activation on the labor market. 8 The NARPDCA to coordinate the development and regular updating of an integrative platform that contains information about the lifelong benefits and services available to persons with disabilities. 183 Social services 5. Social 5. and services and living independent living independent Ionela Ionela has a mild intellectual disability. She was raised by a foster family and later moved to a placement center. For three years now, she has been living in an apartment rented by an NGO that supports young people with disabilities to live independently in the community and she is delighted with the persons she has met this way. She has had various jobs, in a pizzeria or as a sales agent. She wants to have a steady job and a relationship that would make her feel safe. “I was cared for by a foster parent who went to the Lord. She was my mother, as they say: whoever raises you is your parent. Then I went to live in Giurgiu, in an orphanage. It was the hardest for me, I felt condemned in a way. It was a hard time for me, because of the group of children, the staff. They provided good conditions, but I lived among violent people. I nearly died twice. They would send me begging, and I didn’t want to do that. I didn’t feel protected, I belonged to no one, and that was the worst. Now I do belong, to some people who love me and appreciate me with all my flaws. I am glad that I made it here, I am glad for the people that I have met, I am glad for the life that I have now, I am glad for everything.” Social services and independent living 5 Social services and IN SHORT independent living What are the rights of persons with disabilities? Independent living is a fundamental right. Persons with disabilities should be able to choose where and with whom to live on an equal footing with the others and should not be forced to live in any particular living environment. In order to live independently, persons with disabilities must live their lives within the community. For this purpose, the state must provide community-based services that are designed to meet the unique needs and skills of each person with disabilities. Living in a residential center is not a form of independent living for persons with disabilities because, in such an institution, they are not free to make choices about their own lives, such as the services received or the organization of their daily schedule. What are the main problems related to social services and independent living in Romania? The analysis of the situation in Romania indicated four major problems: 1 The incomplete regulatory framework for social services The laws and regulations related to social services do not cover all living situations experienced by persons with disabilities. 2 The institutionalization of persons with disabilities Some persons with disabilities are still living in large residential centers. 3 The limited access to community social services necessary for independent living Some persons with disabilities have no access to community-based social services and some of these services are not of sufficiently good quality. 4 The limited access to social housing Certain persons with disabilities have no access to social housing. 185 Social services and independent living 5 Social services and independent living Independent living is a fundamental human right that is essential to the development of personal identity and the realization of human potential that is recognized by the CRPD equally to persons with disabilities. The CRPD interprets independent living as not only the ability to perform activities of daily living on one’s own but also, primarily, as the freedom to choose and be in charge of one’s own life.397 In particular, life in an institution is characterized by segregation, depersonalization, routine, group services, and lack of choice, which is in clear contradiction with what independent living entails. In order to fully exercise their right to choose where and with whom they live and to lead their life as they wish, each person with disabilities must have equal access to information about independent living alternatives, access to social services and individualized community support, affordable housing options, accessible built environment, transport, information, and other public services. The key issues that will be addressed in this section are: 1. The incomplete regulatory framework for social services. 2. The institutionalization of persons with disabilities. 3. The limited access to community social services essential to independent living. 4. The limited access to social housing. 397 A right enshrined in Art. 19 of the CRPD. The vision and key issues that will be addressed with regard to independent living and inclusion in the community are based on Art. 14, 15, 16, 17, 19, 22, and 23 of the CRPD. 186 Social services and independent living 5.1 5.1 The incomplete The regulatory incomplete framework regulatory for framework IN SHORTsocial for social services services What are the rights of persons with disabilities? Persons with disabilities have the right to better regulations regarding: how their needs are the quality and cost understood requirements of social services how social services are how social services operate planned at the local and county levels how the results of social how social services are services are monitored and financed measured What is the situation in Romania? At the level of the individual, the tools for identifying the needs of persons with disabilities to set objectives, for providing services, and for monitoring their implementation are not designed and used appropriately. Local authorities have no data on local needs in order to develop the most relevant social services. Nor is there any clear method at the national level to estimate this need at the local level, to guide service strategies and plans, and coordinate the implementation of service development plans at the local and county levels. Social services are allocated far too little money in Romania, and this 2,6% situation has been going on for a long time. Between 2009 and 2017, GDP average public spending on in-kind benefits and social services fell 0,6% from 0.8 percent to 0.6 percent of GDP, whereas in the EU, the average has been at least three times higher and continued to rise in the same period from 2.4 percent to 2.6 percent. With regard to in-kind benefits and social services specifically related to disability, Romania spent in 2017 only 0.1 percent of its GDP compared to an EU average of 0.6 percent. 187 Social services and independent living The funds are not well used. Only some of the costs of county-level social services are covered by the central budget, mostly for residential services. Moreover, the cost coverage differs each year, making it difficult for county authorities to support their existing services and plan for new ones. Local authorities (mayoralties) do not receive any direct funds for social services from the central budget and have to finance them from their own budget. The localities with the greatest problems are precisely those that lack the necessary funds to improve the situation. The funding of private social services from public sources is only partially regulated. Therefore, local authorities are reluctant to contract services from private providers. The existing standards governing the quality of social services do not sufficiently reflect the provisions of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and they are not sufficiently monitored and verified to ensure that they are benefiting persons with disabilities and social assistance providers. There are not enough regulations to ensure that the authorities are taking a case management approach adapted to the specific needs of each person with disabilities. What are the key changes that need to be made? Disability must no longer be assessed based on the person’s medical condition but should be based on a bio-psycho-social model that reflects the interaction between that person’s medical condition and the surrounding environment in which he or she lives. The methods by which the needs of persons with disabilities are identified and, subsequently, social services are planned must be reviewed and improved and then implemented in the same way at all levels throughout the country. It is necessary to clarify and simplify the way in which the state finances community-based services for persons with disabilities, including those developed at local level and by the private sector. The requirements for how services should be provided must be periodically reviewed to assess how well they are meeting the needs of persons with disabilities and of service providers. It is necessary to clarify the way in which authorities must manage the case of each person with disabilities in accordance with his or her needs and should take into account all of the forms of support needed by that person. All necessary data must be collected on the existing social services, on how they operate, and on their outcomes. 188 Social services and independent living 5.1 The incomplete regulatory framework for social services The development of social services depends directly on the quality of regulations in the field and on how central and local public authorities constantly encourage their correct application. Key elements in the development of this field include: (i) identifying the existing and emerging individual needs of persons with disabilities and their families; (ii) assessing the needs of existing social services at the local and county levels and planning these services (through annual strategies and plans); (iii) ensuring access to adequate funding; (iv) setting appropriate quality and cost standards; and (v) monitoring, evaluating, and controlling the adequacy of social services for meeting the needs of persons with disabilities. Identifying the individual needs for social services of persons with disabilities Decisions about the support granted to persons with disabilities are primarily based on the results yielded by tools for assessing their individual needs. Disability assessment398 is still strongly medicalized in that the medical evaluation and the reports of specialized physicians are what matter in the assessment, whereas the opinions of persons about their disabilities and the ways in which disability affects their daily life and autonomy are not taken into account. Social inquiries, one of the key tools necessary for assessing disability that is applied by a PSAS representative (usually, a social worker), do not, in practice, help to identify the specific needs of persons with disabilities. The initial individual needs assessment in a social inquiry is often incomplete because of the insufficient understanding and use of the inquiry by the PSAS representative who carries them out and the lack of a clear methodology for conducting it. As a result, it often fails to identify a person’s main activity limitations and participation restrictions and, thus, to indicate the most appropriate options to overcome them. The tools that exist for identifying the needs of persons with disabilities, setting goals, planning the provision of services, and monitoring their implementation are not currently being used appropriately.399 First, although particular tools have a template used at national level, the legal framework fails to indicate a specific methodology for how they should be used and monitored. As a result, different practices are used at the county level, many of which yield information that is too general to be useful.400 Second, the need to provide each type of information in each tool in order to supplement the information in the other tools is not explicitly stated, which can lead to conflicting and uncorrelated information being entered in different tools. Finally, although extensive data are collected on persons with disabilities, the subsequent statistical use of such data is practically nonexistent, as there is no aggregation mechanism to produce relevant information on the situation of persons with disabilities at the national level. 398 This allows for a classification of the level and degree of disability and for the identification of a person’s medical, educational, professional, and social integration needs. 399 See Annex-Table 32 for the main tools used to assess the needs of adults with disabilities and for planning and monitoring relevant services. 400 For example, the services recommended in the Individual Service Plan end up being generic and not customized to the region/ locality in which the person lives. 189 Social services and independent living Assessing local needs and planning social services in the community/ county Good planning of local social services needs to be based on social diagnoses that show the incidence of certain social problems at the local level and recommend solutions. In the absence of a social diagnosis based on quantitative and qualitative data that uses clear criteria for prioritizing social needs, local public authorities do not have a clear picture of which social services are needed in which communities and, thus, cannot accurately estimate their annual budget. Systematically measuring these needs at the local level would make it possible for information to be aggregated at the national level to enable local public authorities to measure funding requirements for services to support vulnerable groups. In Romania, there is a legal obligation to periodically assess the population’s needs for social services at local level, but there is no methodology for such an assessment.401 The law requires local public authorities (counties and municipalities, cities, and communes) to conduct “social surveys and inquiries for the early detection of cases of risk of social exclusion or of other cases of community members in need, and, depending on the situations identified, to propose appropriate measures to support these persons.”402 However, despite several attempts by the MLSP, there is no recommended methodology for doing this (let alone one approved through a regulatory act) for identifying the needs for social services at local level to be applied at national level. Local and county authorities need to prepare medium- and long-term strategies and annual action plans for the development of social services. According to Law no. 292/2011 on social assistance, every public administration authority should develop a medium-term strategy (covering five years) and a long-term strategy (covering 10 years) for the development of social services based on the results of the assessment of local needs and relevant national strategies. Public and private providers of social services, professional bodies, and representatives of beneficiaries of services (including of persons with disabilities) should be consulted when these strategies are being developed. Local public administration authorities should also prepare an annual action plan on local social services,403 which must be approved by the county council (or local council) and subsequently sent to the MLSP.404 Law no. 215/2001 on public administration requires local councils to ensure that the necessary framework is in place for the provision of local public services in the fields of education, health, child protection, social housing, and services for persons with disabilities.405 The methodological coordination of NARPDCA for the preparation of county and local strategies should be strengthened, as should the monitoring of their implementation. In practice, not enough progress has been made at the central level in monitoring the implementation of these strategies and advising on to ensure that 401 Such a methodology should refer to: (i) how to set up the local working group responsible for deciding on the local priorities in terms of social services priorities, including the representatives of persons with disabilities; (ii) the work procedures for this group (stages of the process, responsibilities within the group, types of documents prepared and analyzed); (iii) the tools for collecting quantitative and qualitative data on the local needs of persons with disabilities, which focus on access to social and support services (list of statistical indicators, interview grids, survey templates and sampling methods); (iv) the criteria for prioritizing social needs; and (v) an indicative reporting template. 402 Pursuant to Art. 112 let. g) of Law no. 292/2011 on Social Assistance. 403 Pursuant to Order of the minister of labor and social justice no. 1086/2018, the action plan specifies the priorities for development, extension, or investment in services at the level of the administrative-territorial unit. It also substantiates the funding necessary for the social services, from various budgetary sources, including the State budget. 404 Pursuant to Art. 3 let. a), Art. 112 para. (3) let. a), and Art. 117 of Law no. 292/2011 on social assistance. A plan template was approved by Order no. 1086/2018. 405 Law no. 215/2001, Art. 36 para. (6) points 1–8 and 17. 190 Social services and independent living they comply with the provisions of the CRPD, including the need to provide persons with disabilities with options for independent living/living in the community. Moreover, there is no requirement to harmonize measures in the county and local strategies with the NSPD or to ensure that the indicators used to monitor the implementation of local strategies and the NSPD are aligned. Public funding of social services Social services in Romania are underfunded, and this has not improved over time. Between 2009 and 2017, public expenditure on in-kind benefits and social services in Romania decreased from 0.8 percent to 0.6 percent as a proportion of GDP, whereas the EU average was three times higher and has continually increased. Expenditures specifically on persons with disabilities have remained almost the same in Romania, whereas the EU average has significantly increased (see Table 5). Expenditures on in-kind benefits and social services, Romania and EU average, TABLE 5 2009 and 2017 European Romania Union 2009 2017 2009 2017 Total in-kind benefits and social services (percent of GDP) 0.8 0.6 2.4 2.6 Total in-kind benefits and social services in €per inhabitant (in 51 50 575 705 constant 2010 prices) Disability in-kind benefits and social services (percent of GDP) 0.1 0.1 0.5 0.6 Disability in-kind benefits and social services (in constant 2010 9 11 134 177 prices) Disability in-kind benefits in purchasing power standard per 23 196 inhabitant Source: ESSPROS. Note: The value “51” of the indicator “Total in kind benefits and social services” in €per inhabitant should be read as: €51 were spent in Romania in 2009 in constant 2010 prices. Between 2009 and 2017, there was a decrease in real terms of the amounts spent per person with in-kind benefits and social services in Romania. Purchasing power standard (PPS) is an artificial common reference currency unit used in the European Union which eliminates the differences of price levels between countries. A PPS allows to buy the same volume of goods and services in all the countries. The funding of social services from the state budget supports only a proportion of the public system. According to the State Budget Law, the funds from the state budget only cover a part of the expenditures on social services at the county level, while the county councils must in turn allocate a part of their own budgets as well (Box 31). According to the law, the state budget covers only expenditure related to “public centers for the social assistance of persons with disabilities.” This creates an incentive for counties to keep their residential centers despite the national commitment to deinstitutionalization and discourages them from developing other types of services at the community level to which institutionalized persons with disabilities could transition as they leave their institutions. This legal provision also gives potential private providers no incentive to develop social services.406 The funding of residential services is unpredictable, which inhibits medium-term planning for and the development of social services at the county level. The State Budget Law specifies the funding percentage covered by the national budget during 406 Counties that develop social services with the support of private providers (sometimes these represent more than 50 percent of the social service providers) are clearly disadvantaged by this way of funding. 191 Social services and independent living that year. In 2020, for example, it was only 50 percent of the budget needed by counties, less than the amount that they requested in their budget planning documents that were collected from them at the end of 2019.407 Besides the annual change in the percentage itself, the actual amounts provided fluctuate significantly from one year to another as well, so county councils have to adjust their local budgets accordingly to cover the variable costs of social services in the county. For example, in 2018, for the public residential services for adults with disabilities in Iași County, the national budget covered RON 21.7 million, which dropped by more than half to RON 10.6 million in 2020.408 These imbalances have a knock-on effect on terms of reducing the funding for the other types of services needed by persons with disabilities. Legislation on funding social services from the state budget BOX 31 Art. 20 of Emergency Ordinance no. 103/2013 on the salaries of staff paid out of public funds in 2014, as well as other measures in the field of public expenditure, as subsequently amended, makes this statement on the percentage of funding of the county social services from the state budget: “(1) Starting with 2014, the funding of the child protection system and of the social assistance centers for persons with disabilities shall be ensured from the state budget, from amounts having as source the value added tax, up to 75 percent, at the most, of the necessary established by the Ministry of Labor, Family, Social Protection, and the Elderly [currently, the Ministry of Labor and Social Protection] based on the cost standards calculated for beneficiaries/types of social services, approved by Government Decision no. 23/2010 approving the cost standards for social services. (…) (3) For the full funding of the expenses provided for in paragraphs (1) and (2), the local public administration authorities must allot amounts from their local budgets, but no less than 25 percent.” Art. 20 of GEO no. 103/2013 was amended by Art. 16 of GEO no. 57/2015, as follows: “(1) The funding of the child protection system and of the social assistance centers for persons with disabilities shall be provided from the state budget, from amounts having as source the value added tax, up to 90 percent, at the most, of the necessary amount calculated by the Ministry of Labor, Family, Social Protection, and the Elderly when establishing the state budget, based on the cost standards calculated for beneficiaries/types of social services.” According to Art. 5 of the State Budget Law no. 5/2020, the amounts having as source the value added tax, referred to in Art. 4 let. a), are intended, inter alia, for the funding of the child protection system and of public centers for adults with disabilities (point a). The financial decentralization of social services is incomplete, as only county authorities (county councils and GDSACPs) receive public funding from the state budget, but not the local authorities. Although local authorities (municipalities, cities, and communes) are in the best position to know the needs of their communities, the central government transfers the funding targets only to county authorities, while local authorities must use their locally collected taxes to fund their social services. The functional classification used in budget planning and allocation at the local level includes specific headings for monetary social benefits, for which the state budget provides funding through transfers to the Mayoralty; but there is no specific heading for social services, so the amounts allocated from the central level cannot be spent in this particular social assistance sector.409 Besides the lack of prioritization of social services at the local level, it is unlikely that small urban or rural localities would have 407 Law no. 5/2020 on the State Budget, Annex 4, p. 158-159. 408 Law no. 5/2020, Annex 5, p. 159, and Law no. 2/2018, Annex 4, p. 180. 409 The functional classification is the set of fields, branches, and lines of business towards which public financial resources or transfers between different levels of the public administration are directed. These fields are specified in the Public Finance Law. The classification is a budgetary planning tool, regulated by Order no. 1954/2005 of the Ministry of Finance, as subsequently amended, the last amendment being made in 2017. At the level of mayoralties, Annex 2 of this order is used, and at the level of the counties and of the Municipality of Bucharest, Annex II of this order. The structure of the functional classification may be modified by order of the Minister of Finance. Currently, the functional classification at the level of local public authorities (mayoralties) does not include any specific heading for social services, but only a general chapter on “Social assistance” expenditure (Chap. 68). This chapter presents in detail all types of financial social benefits for which the central budget ensures the funding, by transfer to mayoralties, but there is no heading dedicated to social services. 192 Social services and independent living the necessary funds to develop or sustain such services.410 As a result, investments in services vital for the inclusion and participation of persons with disabilities411 cannot be developed locally, according to the identified needs. Public authorities are reluctant to purchase social services from private providers because public procurement legislation is ambiguous. The procedure governing the procurement of social services has been harmonized with the European Directive (2014/24/EU) on public procurement, and states that, for social services included in Annex 2 of the law on public acquisitions, each contracting authority must develop its own “procurement procedure” that should be transparent to the public and included in the Internal Procedures Manual of the public authority in question. Although this is a first step in the development of services by the private sector, there are still no guidelines from the National Agency for Public Procurement (NAPP) on how to implement these procurement procedures, specifically: (i) the content of the public procurement documentation; (ii) the criteria for evaluating whether private providers are observing the minimum quality standards, incorporating the provisions of Art. 19412 of the CRPD, and abiding by the rigorous procedures governing service procurement; (iii) the procedures for monitoring the contracts with private providers to provide social services; and (iv) the procedures for terminating these contracts. The MLSP developed a first version of guidelines on social services procurement in 2019, which is now being finalized by the NAPP. Providing social services Even though the accreditation of social service providers is a relatively accessible process, the process of obtaining the NARPDCA’s approval and the subsequent licensing of the social services is based on complex documentation. A provider of social services for persons with disabilities has to fill in a minimum of 30 documents, on paper or in electronic format, to cover the range of service quality monitoring indicators in the quality standards required for licensing. The process could be streamlined by digitizing the procedures, simplifying them where appropriate (Box 32), and ensuring the interoperability of central and local authorities’ databases. Ways in which licensing documentation for sheltered houses could be simplified BOX 32 In order for a provider of sheltered houses to become licensed, about 40 written procedures and other documents are required, but some could be either removed or simplified. For example: The register of cases of neglect or abuse, as well as the register of cases of torture and inhuman treatment, may be aggregated into a single document in unforeseen or exceptional circumstances. The register of the lifelong training available to staff may also include information on the list of participants in the training sessions, with no need to prepare a separate document. 410 Across the country, out of 150 social services without accommodation for persons with disabilities, only 7 are in rural areas. 411 For example, rehabilitation services, respite care, services for independent living, personal assistance and household support services. 412 Specifically, clarifications are necessary as to how the right of persons with disabilities to choose their residence and person to live with would be observed in the concrete case of procuring residential services from a private provider, considering that persons with disabilities may not express their opinion during the procurement procedure. 193 Social services and independent living The quality standards applicable to social services for persons with disabilities need to be reviewed more frequently by the NARPDCA based on empirical assessments. Even though quality standards have been prepared and approved for a number of critical social services for persons with disabilities, in some cases they have been insufficiently piloted or are not sufficiently synchronized with the provisions of the CRPD.413 Quality standards should be tested and adjusted as necessary soon after their approval.414 However, there is currently no systematic mechanism in the NARPDCA for consulting the organizations representing the beneficiary persons with disabilities and other stakeholders.415 Moreover, although licensed social services are likely to comply with the new standards on paper, no qualitative and systematic assessment has been made so far of how these standards work in practice to the benefit of those accessing services. An assessment of this kind would make it possible to make any necessary adjustments to the standards or even remove some of the criteria. The cost standards were updated in May 2020, but there is no predictable mechanism to adjust them. The standards were updated five years after their last modification.416 Because of recent salary increases in the public sector, there have been substantial increases in standard costs for certain types of services,417 which has created difficulties for private providers.418 Beyond this recent change in the level of cost standard, there is no predictable mechanism for adjusting costs on a regular basis. Such a mechanism should require: (i) a clear and transparent methodology for calculating cost standards for each service, which should take into account the specificity and cost of the activities conducted by both private and public providers 419 and the expenditure on products specific to the needs of the beneficiaries; (ii) rigorous and detailed information on the actual costs of a variety of services, which should take into account the number of beneficiaries that they serve (their economies of scale); and (iii) a consultation mechanism bringing together both public and private social service providers as well as representatives of persons with disabilities. Case management for adults with disabilities is mentioned in the legislation, but it is used only in residential services and there are no templates of tools to be used. Order no. 1218/2019, which regulates case management, especially refers to420 the 413 Pursuant to Order no. 1218/2019 of the MLSJ (currently MLSP), the specific minimum mandatory quality standards regarding the application of the case management method in the protection of adults with disabilities have been approved. According to Order no. 82/2019, specific minimum mandatory quality standards for adults with disabilities have been approved: (i) habilitation and rehabilitation centers; (ii) centers for independent living; (iii) care and assistance centers; (iv) sheltered houses; (v) respite care centers; (vi) crisis centers; (vii) home care service; (viii) mobile team; (ix) day centers; and (x) assistance and support services. According to Order no. 1069/2018, the minimum mandatory standards for ensuring the care and protection of adults with severe or accentuated disabilities by their professional personal assistants have been approved. 414 A concrete example is the provision, included in the standards, according to which in a sheltered house there must be at least two adults with disabilities, while many such persons can and want to live alone. Such a provision in the quality standards should allow a quick correction, taking into account the fact that it violates Art. 19 to the CRPD. 415 Pursuant to GD no. 50/2015, the NARPDCA coordinates the methodology for implementing the quality standards for persons with disabilities. 416 GD no. 978/2015 approving the minimum cost standards for social services and the level of monthly income per family member based on which the monthly support contribution due by the persons legally supporting the elderly in residential centers is established. 417 For example, for adults with disabilities in care and assistance centers (CACs), the amount of the expenses per person has increased from RON 33,828 per year to RON 66,852 per year. 418 The qualitative research has identified private providers complaining about the fact that their own internal budgets could not provide staff pay levels similar to those in the budgetary sector. Some of them consider that, in practice, non-compliance with the minimum cost standard may negatively affect them in the service re-licensing process or in the control process carried out by the Social Inspection. 419 Including case management expenses. 420 According to Module 1, Standard 1, Requirement 3, adults with a disability certificate living with their families benefit of case management if they have an individual service plan and other measures in place. This requirement generates a circular problem as the individual service plan must, in turn, be prepared by a case manager assigned to the respective person with disabilities. Consequently, public social assistance services appoint case managers for persons with disabilities in residential services, at the most, and not for persons living in families. 194 Social services and independent living case managers of persons with disabilities from residential services who are working to transfer these persons into family-type alternative living arrangements. According to this order, case managers must fill out a large number of documents (such as beneficiary satisfaction surveys, evaluation reports on the beneficiary and her/his life context, risk identification sheets, activity reports, monitoring reports, monitoring sheets, case closure reports, and post-service monitoring reports), but the order did not come any templates for these tools or any methodological guidelines on how they should be filled in. Monitoring the situation of social services There is no systematic monitoring of the situation of services for persons with disabilities. In order to make informed policy decisions, policymakers need at least statistical data on the type and number of beneficiaries of social services, the staff profile in different categories of services, and real monthly costs of providing these disaggregated by types of costs and sources of funding. The MLSP began collecting such information in 2019 on all types of social services (including those for persons with disabilities), but the data were only partially reported by the GDSACP, and results of any analysis of these data have not been made available to the general public. There is a need to continue this effort and improve the process. Evaluating social services It is essential to evaluate the quality of social services to enable ongoing improvements to be made if necessary. The evaluation of the quality of social services constitutes “the systematic and objective assessment of a service, including of its design, implementation, and results. An evaluation should provide credible and useful information to incorporate the lessons learned in the decision-making process, both for beneficiaries and for managers or funders.”421 Evaluations of how the service provider is performing can be internal when they are carried out by the social service team themselves or they can be external when they are carried out by an independent body.422 The absence of an external evaluation system means there is no way to ensure that social services are able to adapt to the ever-changing needs of their beneficiaries and are providing the services needed to improve the quality of life and increase the autonomy and social participation of persons with disabilities.423 There are different options for organizing and funding this evaluation function. The external evaluation of a social service is mandatory in most EU member states, usually every three or five years. In general, the costs of the evaluation are shared by the service provider and the public authority. The evaluators may be public or private organizations or independent experts authorized by the national regulatory authorities to carry out the evaluation of a particular type of social service. 421 OECD (2002). 422 In the European Union, the concept of ongoing improvement is a fundamental quality principle, included in the Voluntary European Quality Framework for social services of general interest. The Voluntary European Quality Framework for Social Services (SPC/2010/10/8/final) is a document prepared by the European Commission that guides the work of social service providers in EU Member States, for a common understanding of the quality of services. It proposes a set of general principles of quality and methods for measuring them, at the level of any type of social services, and it can be used when preparing national methodologies for evaluating and monitoring the quality of these services. 423 See in this regard the conclusions of the European Commission’s first two biennial reports on social services of general interest: the 2008 Biennial Report on Social Services of General Interest, Brussels, 2.7.2008, COM (2008) 418 final, p. 61, and the 2010 Second Biennial Report on Social Services for General Interest, Brussels, 22.10.2010, SEC (2010) 1284 final, p. 38. 195 Social services and independent living BOX 33 Models of the evaluation of social services in different countries In Anglo-Saxon countries, external evaluators are often independent experts who are authorized by the national regulatory authority in the field of social services. These experts are required by law to undergo constant training in the field of quality evaluation and to perform a minimum number of evaluations per year. Thus, they accumulate a certain number of credits each year, which gives them the opportunity to continue their evaluation activities. Each evaluator is paid for each evaluated service as their jobs are not fixed, full time, in the organization chart of any regional or national agency. In France, the National Health Authority has, since 2018, been responsible for regulating the external evaluation process for the social and medical-social services. It periodically authorizes quality evaluators who can carry out evaluations of the social services in the country. These evaluators can also be for-profit or not-for-profit organizations that are, as well as independent experts, qualified to undertake this type of evaluation. The list of authorized evaluators is published periodically on the Authority’s website (the list included approximately 1,000 authorized organizations and individuals in 2020). Every provider of social services has the obligation to initiate an external evaluation of its services at certain intervals and can choose one evaluator from the official national list. The terms of reference and specifications for hiring evaluators are defined by the National Health Authority. Source: La Haute Autorité de Santé (2018). In Romania, the evaluation of social services is required by law but is not fully developed. According to existing legislation,424 the evaluating function, as well as those for monitoring and auditing the quality of social services, are the responsibility of the National Agency for Payments and Social Inspection (NAPSI) through their social inspectors in each county. However, there are three main problems with the current situation. First, the monitoring and evaluating functions are not clearly distinguished from the auditing function. NAPSI has only one set of social inspectors at county level to carry out all functions,425 which is problematic because these functions are fundamentally different: the audit is designed to verify the compliance of social services with the law, whereas the monitoring and evaluation are designed to inform constant improvements to the quality of these services.426 Second, there has been no systematic effort to train social inspectors to become qualified evaluators of social services through specific training courses and/or the use of specific working tools.427 Finally, because the Agency has so few inspectors, and given the growing importance of the auditing activity, the total number of social service evaluations that are currently carried out is very low.428 Social service auditing In 2019, the NAPSI carried out 104 inspections of residential social services for persons with disabilities. The inspectors found 33 cases of non-compliance with the minimum standards (see Figure 23) They proposed revoking the licenses of only three services and ordered 419 remedial measures, and in none of these cases did they refer 424 Pursuant to Art. 21 (1) of Law no. 197/2012. 425 In 2016, a provision was introduced in the Statute of Social Inspectors, according to which “inspectors-evaluators of social services” shall no longer exercise the auditing prerogatives. The provision has never been complied with, as no additional evaluator positions have been allocated at CAPSI level. Currently, the provision is no longer part of the framework document applicable to social inspectors. 426 The auditing activity is carried out when there are significant risks of non-compliance with the standards or norms in the respective field. The inspector focuses strictly on the legal aspects and verifies in detail the provider’s practices in relation to these norms (such as health, labor protection or minimum quality of services). The quality evaluator, on the other hand, is a professional whose role is to advise and guide teams toward making permanent improvements in their working practices with the beneficiaries. The evaluator focuses on solutions that should increase the positive impact of the service, on successful models that should inspire and increase performance at the level of the existing services, on ways to best meet the ever- changing needs of service users, and reflects, together with the teams, on the constant improvement of these results. 427 In 2012 and 2017, methodologies for evaluating social services have been developed within two technical assistance projects (SMIS 10845 and SRSS/SC2017/003) but they have not been even partially adopted by the MLSP. 428 In 2019, 171 social services for adults with disabilities were subject to evaluation/monitoring, of which 19 social services were subject to evaluation and 152 to monitoring activities (NAPSI 2019). 196 Social services and independent living any service to the relevant criminal investigation bodies for suspected error, fraud, abuse, or negligence. Inspections of residential social services for persons with disabilities, 2019 FIGURE 23 Habilitation and rehabilitation centers 18 58 Centers for independent living 4 Care and assistance centers for 15 42 persons with disabilities Services verified Services where irregularities have been identified Source: NAPSI inspection campaign (2019). The NAPSI needs additional resources to properly carry out its duties. In 2020 NAPSI had only 296 social inspectors responsible for inspecting all types of social services and providing social benefits.429 In order to effectively inspect social services, the number of social inspectors should be significantly increased, especially in those counties where there are currently not enough of them to allow for a division of the teams by specialization (by benefits, services, and other types of inspections).430 There is also a need for NAPSI in cooperation with the NARPDCA to develop training courses for social inspectors and to set up working groups to improve methodologies and tools for thematic inspections of services for persons with disabilities. Moreover, additional clarity is needed on how to monitor the application of remedial measures, as well as on consequences if social service providers do not implement these measures within a reasonable time. Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to perform an analysis of the tools used to identify the specific needs of persons with disabilities, plan the provision of necessary services, and make recommendations for how to improve and standardize those tools, supplemented by clear instructions for their use. 2 The NARPDCA to review the law regarding the tools used to identify specific needs of persons with disabilities, including for persons living in residential institutions, and to plan the provision of necessary services for persons with disabilities, including for persons living in residential institutions. 3 The Ministry of Labor and Social Protection (MLSP) with support from the NARPDCA to develop a methodology for the periodical assessment of the need for social services at the local and county levels, including for identifying the specific needs of persons with disabilities. 429 In 2019, 206 social inspectors were responsible for the auditing, evaluation, and monitoring of social services. 430 At national level, there are some counties that have allocated only three or four such positions (for example, Călărași – 3 positions; Covasna – 3 positions; Brăila – 4 positions; Giurgiu – 4 positions; and Harghita – 4 positions), while others have 10 to 12 positions (for example, Dolj – 10 positions; Iași – 10 positions; Suceava – 11 positions; and Bucharest – 12 positions). 197 Social services and independent living 4 The NARPDCA to develop an assessment grid of county strategies for the development of social services for adults with disabilities and of a system of indicators at the county level to guide the development of social services for these persons. 5 The MLSP to amend Law no. 292/2011 on social assistance so as to provide for the possibility of transfers from the state budget to local authorities at the level of municipalities, cities and communes, similar to the way in which county authorities are currently financed in this sector. 6 The MLSP to amend the legislation to ensure the financing of all types of social services for adults with disabilities, from the amounts deducted from VAT, allocated to counties, municipalities, cities, and communes. 7 The MLSP in collaboration with the Ministry of Finance to identify the necessary legislative changes in order to ensure a predictable percentage of coverage from the state budget of social services at the local level.431 8 The Ministry of Finance to include in the annual State Budget Law a series of specific funding lines from the state budget for community-type social services specifically for persons with disabilities in municipalities, cities, and communes, in addition to those that are currently approved at the county level. 9 The National Agency for Public Procurement (NAPP) to elaborate guidelines regarding the public procurement of social services. 10 The MLSP – including the NARPDCA – to simplify and digitize the process of accreditation, licensing, and re-licensing of social services. 11 The NARPDCA to conduct an analysis of how the specific mandatory minimum quality standards for residential centers are implemented, focused on the way in which they meet the needs of the beneficiaries, on the constraints faced by providers, and on including recommendations for improvement. 12 The NARPDCA to periodically improve the specific mandatory minimum quality standards for social services for persons with disabilities based on their analysis and in consultation with key actors in the field of social services. 13 The NARPDCA to prepare methodological guides for implementing the specific mandatory minimum quality standards. 14 The NARPDCA to develop and approve a methodology for periodically reviewing the cost standards for social services for persons with disabilities. 15 The NARPDCA to monitor the number of case managers at county level, depending on the number of persons with disabilities and the services provided, and to encourage its increase where appropriate. 16 The NARPDCA to prepare a methodological guide for the case manager and train case managers in each GDSACP. 431 The determination of the percentage should be similar to the way in which the co-financing of the county authorities is decided, for the social services at this level (State Budget Law, Annex 4). 198 Social services and independent living 17 The MLSP and NARPDCA to periodically produce statistical reports on the status of social services for persons with disabilities, including about human and financial resources. 18 The NARPDCA to prepare a set of criteria for assessing social services for adults with disabilities.432 19 The National Agency for Payments and Social Inspection (NAPSI) to increase the number of social service inspectors and strengthen its technical capacity with the support of the NARPDCA from the point of view of improving inspection instructions and tools and providing training on their use, to increase the efficacy of their inspections of social services for adults with disabilities. 432 The set of criteria would help the MLSP finalize their methodology for assessing social services. The MLSP should approve a methodology for assessing social services and set up a body of evaluators trained in this regard. 199 Social services and independent living The institutionalization of persons IN SHORT 5.2 5.2 Institutionalization of persons with disabilities with disabilities What are the rights of persons with disabilities? Persons with disabilities have the right to live an independent life in the community, rather than in a residential service of any kind. Institutionalization is a violation of the right to independent living. Solutions must be found to enable persons with disabilities to leave institutions and live in the community, while providing the necessary support. Specifically, this means closing down the existing residential services and re/organizing others so as to provide support for independent living in the community. This process represents “deinstitutionalization.” What is the situation in Romania? 17,500 persons live in residential sheltered centers houses In Romania, approximately 17,500 persons live in residential services, most of whom (16,392 persons) are in residential centers, while the rest live in sheltered houses. 16,392 1,108 132 120 Between 2012 and 2020, there was a slight increase in the number of large residential centers (with over 50 or 100 beneficiaries). Residential centers with over 50 beneficiaries 43 Residential centers with over 100 beneficiaries 38 2020 2012 intellectual mental disabilities disabilities 14% Most of those living in residential centers in Romania are persons with intellectual or mental disabilities (51 percent 51% 35% and 14 percent respectively), while the rest have other types of disabilities. other types of disabilities 200 Social services and independent living There are big differences between counties: some have under 100 1000 about 1,000 beneficiaries living in residential centers, while beneficiaries beneficiaries others have only 100 or fewer. all of their transferred A study from 2013 showed that, among all institutionalized lives to other persons with disabilities, 67 percent had spent all of their centers lives in the same center, while another 14 percent had been transferred at some point to other centers. Only 14 percent 67% 14% of the persons leaving institutions had been integrated into their family or community (the rest of them were no longer in an institution because they had died). What are the causes of this problem? There is no functional mechanism at the national level to coordinate the deinstitutionalization of persons with disabilities with the consent, support, and all the necessary resources being provided at the county level. The staff of the General Directorates for Social Assistance and Child Protection often have limited experience and knowledge of how the deinstitutionalization process should be carried out. Moving to a policy of promoting independent living means first and foremost ensuring that persons with disabilities have freedom of choice. Deinstitutionalization, as it is currently carried out in Romania, carries the risk that persons with disabilities will simply be transferred from “old” services to “new” ones, without being informed about their options and without being given an opportunity to choose. The European Union and national funds used for deinstitutionalization until 2020 were provided only for the establishment of sheltered houses and day centers. Moreover, sheltered houses do not meet the needs of persons with disabilities as defined by the provisions of the CRPD (the construction of sheltered houses could be masked transinstitutionalization, meaning the transfer in smaller sized, friendlier settings, but nevertheless institutional). What are the key changes that need to be made? It is necessary to prepare a national report setting out the most important principles underlying the deinstitutionalization process and the actions that must be taken to put it into practice. It is necessary to prepare a deinstitutionalization guide containing specific assessment and planning tools for each beneficiary and at center level. The deinstitutionalization process must be monitored using data reported at the residential center, county and national levels. Sufficient funding for deinstitutionalization must be made available, including from European Union funds. 201 Social services and independent living 5.2 Institutionalization of persons with disabilities Persons with disabilities can only independently live in the community outside of residential care institutions of any type. The institutional setting facilitates the violation of all the rights of persons with disabilities set out in the CRPD, either through formal laws or practices that prevent the exercise of those rights. An institutional setting is characterized by a paternalistic approach to service delivery and to depersonalization, a rigid schedule and routine, group treatment, isolation, and social distance,433 which lead to residents’ lack of control over everyday decisions and the freedom to choose where and with whom they live. Institutionalization per se infringes on the right of a person to live independently,434 and the arbitrary limitation of this right constitutes an illegal deprivation of liberty.435 In addition, decisions to institutionalize a person on the basis of their disability are a form of discrimination, indicating a failure to provide community support and services to persons with disabilities, who thus have no choice but to accept being segregated in institutions.436 Respecting their right to live independently requires, among other things, structural changes like deinstitutionalization – in all its forms – and putting an end to the institutionalization process. In the absence of alternative care and support and independent living skills, most institutionalized persons spend their whole lives in residential care facilities. A study from 2013 showed that 67 percent of the persons with disabilities placed in an institution remained there for their entire lives, whereas only 14 percent of them were transferred to other centers at some point. Only 14 percent of those who left the institutions were reintegrated into their families or the community.437 Description of the problem In Romania, there are several types of residential services. Order no. 82/2019 of the minister of labor and social protection laid down standards for two types of residential services that can accommodate up to 50 beneficiaries (habilitation and rehabilitation centers and care and assistance centers). In addition, there are centers for independent living with up to 20 beneficiaries, supportive housing facilities with up to 10 persons, and respite or crisis centers (which will be discussed in the next subchapter). Since 2018, traditional residential care centers438 have to go through a restructuring process (if the center has a capacity of more than 50 beneficiaries) or a reorganization process (for centers with a capacity of less than 50 beneficiaries). At the end of this process, they have to either be reaccredited as new centers or shut down completely and must transfer their beneficiaries to other types of newly created residential services or into the community.439 Restructuring each center with more than 50 places could take until 2021. Therefore, there is currently a mix of residential services available in Romania, with some managed on the basis of recent quality standards and others that follow older standards. 433 EEG (2012). 434 CRPD, Art. 19. 435 CRPD, Art. 14; Human Rights Council (2019, para. (30)). 436 CRPD Committee (2018, para. (30)). 437 Institute for Public Policies (2013). 438 Traditional residential care centers include: (i) care and assistance centers (CACs); (ii) centers for occupational therapy-based integration (COTBIs); (iii) pilot centers for disability recovery and rehabilitation (PCDRRs); (iv) neuropsychiatric recovery and rehabilitation centers (NRRCs); and (v) disability recovery and rehabilitation centers (DRRCs). 439 Pursuant to GEO no. 69/2018, the President of the National Authority for Persons with Disabilities issued Decisions no. 878 and no. 877/2018, which entered into force. They set the procedural framework for both the reorganization of centers with a capacity for 50 residents or less (Decision no. 877/2018) and the development of restructuring plans for residential care centers for adults with disabilities with a capacity for more than 50 residents (Decision no. 878/2018), receiving methodological guidance from the NARPDCA. 202 Social services and independent living At the moment, a large number of persons are living in residential social services, with this number having slightly increased over the last few years. In Romania, residential services have a total of approximately 17,500 residents, most of whom are accommodated in residential care centers (16,392 persons) – Annex-Table 33. Since 2012, residential care centers have slightly increased their number of beneficiaries, while the number of centers has increased significantly (Table 6). Even if the average number of beneficiaries has dropped in large-scale centers, there has been a slight increase in the number of residential care centers with more than 50 beneficiaries and those with 100 beneficiaries or more. Trends in the number of residential care centers (RCCs) and RCC beneficiaries, TABLE 6 2012-2020 2012 2020 Total RCC beneficiaries 15,765 16,392 All centers No. of RCCs 232 292 Average number of beneficiaries per RCC 68 56 Total RCC beneficiaries 12,095 11,840 Centers with 50+ No. of RCCs 120 132 beneficiaries Average number of beneficiaries per RCC 101 90 Total RCC beneficiaries 6,699 6,390 Centers with 100+ No. of RCCs 38 43 beneficiaries Average number of beneficiaries per RCC 176 149 Source: NARPDCA data as of March 31, 2012, and 2020. Note: RCCs comprise all residential services, with the exception of centers for independent living, supportive housing facilities, and respite or crisis centers. In residential care centers, most beneficiaries have mental (intellectual) or psychosocial disabilities, assessed as either severe or accentuated. As in the rest of the EU, in Romania, most persons living in residential care centers for adults with disabilities have mental (or intellectual) or psychosocial (51 percent and 14 percent respectively) – Annex-Table 34. Nevertheless, there are also residents with moderate or even mild disabilities.440 One-third of the persons with disabilities living in residential care centers are under 35, whereas the elderly account for 20 percent of beneficiaries. Differences in age structure are found between different types of centers, with care and assistance centers and pilot centers for disability recovery and rehabilitation having higher shares of older beneficiaries (Annex-Table 35). The structure of the institutionalized population based on age, level, and type of disability did not change significantly between 2012 and 2020 (Annex-Table 36). There are major variations between counties regarding the number of institutionalized persons and its evolution over time. Data disaggregated by county indicate a significant difference between counties, with some having approximately 1,000 persons in residential care centers and others with 100 persons or less (Figure 24). Those counties with the largest numbers in absolute terms are among those reporting the most persons living in residential care centers as a share of total disability certificate holders. In only 18 of the 42 counties was there a decrease in the number of persons with disabilities living in residential care centers between 2012 and 2020. Out of the 10 counties with the highest number of persons in residential care centers, only 440 As of March 31, 2020, out of all persons living in residential services (17,496 persons), 43 percent had a certificate for high disabilities, 47 percent for accentuated disabilities, 9 percent for moderate disabilities, and 1 percent for mild disabilities. 203 Social services and independent living two recorded a slight drop in the number of beneficiaries in this interval. Number of beneficiaries in residential care centers, by county FIGURE 24 No. of RC beneficiaries in Variations in no. of RC % of RC beneficiaries in 2020 beneficiaries in 2020-2012 total persons with disability Mureș 1,008 5 5.0 Prahova 1,006 -105 2.9 Suceava 782 11 3.7 Bacău 708 41 3.9 Sibiu 708 -33 4.5 Timiș 680 20 2.7 Tulcea 663 115 7.2 Neamț 653 16 3.7 Iași 604 127 2.3 Constanța 592 132 3.0 Argeș 538 -80 1.8 Vâlcea 486 107 2.7 Bihor 483 57 2.4 Buchares 465 -55 0.7 Vasului 451 -47 1.8 Olt 438 -18 2.5 Alba 432 127 1.7 Sălaj 392 28 2.6 Botoșani 385 33 3.1 Vrancea 382 38 2.1 Maramureș 375 -67 2.1 Satu-Mare 375 173 2.6 Gorj 359 37 2.9 Cluj 333 47 1.3 Hunedoara 320 -102 1.6 Ilfov 241 -3 1.9 Călărași 227 -41 1.7 Bistrița 221 -49 1.3 Buzău 220 39 1.3 Ialomița 211 85 2.3 Dolj 198 19 1.3 Arad 182 -3 1.2 Dâmbovița 172 -12 0.9 Brașov 169 -8 1.3 Harghita 148 8 1.3 Caraș-Severin 139 -11 1.0 Mehedinți 124 38 0.6 Brăila 123 -15 0.7 Galați 122 87 0.8 Teleorman 122 -14 1.0 Giurgiu 112 -109 1.1 Covasna 43 9 0.8 Source: NARPDCA data on residential care centers, with the exception of centers for independent living, crisis centers, and respite centers, as of March 31, 2012, and 2020. 204 Social services and independent living Explanation of the problem Romania is committed to ensuring that institutionalized persons with disabilities can live independently in the community. First, Romania ratified the CRPD by passing Law no. 221/2010, which came into effect on March 2, 2011, and which expressly states the right of persons with disabilities to live independently and be included in the community. Second, Romania is required to comply with the deinstitutionalization provisions set out in the European Disability Strategy 2010-2020 of the Council of the European Union and in the Council of Europe Strategy for the rights of persons with disabilities 2017- 2023.441 Third, the NSPD 2016-2020 identifies deinstitutionalization as crucial and sets a specific objective regarding deinstitutionalization, the prevention of institutionalization, and the development of alternative support services to enable persons with disabilities to live independently and be included in the community.442 Three key elements can reduce the problem of institutionalization:443 (i) the availability of deinstitutionalization guidelines and intensive training of the stakeholders who should be involved in the process; (ii) constant guidance and monitoring of the deinstitutionalization process by NARPDCA; and (iii) sustained funding for the deinstitutionalization process and for the development of social services at the community level. Existence of a deinstitutionalization guideline and of intensive training for stakeholders involved in the process At the moment, there are no guidelines detailing the way in which deinstitutionalization process should be conducted. To ensure that all GDSACPs are carrying out this process in a systematic and uniform way, they need some comprehensive guidelines with working tools to help their staff and other persons engaged in implementing the process. These guidelines should include recommendations regarding the best deinstitutionalization solutions, good practices, and instruments for conducting beneficiary assessments and finding the best options together with residents. Furthermore, the guidelines should come with a data aggregation tool for centers to use to generate their deinstitutionalization plans to be monitored by the GDSACPs and the NARPDCA. GDSACP employees are only vaguely familiar with the principles of deinstitutionalization and the best solutions for bringing it to fruition. Deinstitutionalization is a complex process and, therefore, county stakeholders need to know about the CRPD provisions, the steps needed to deinstitutionalize residents, how to carry out beneficiary assessments, and the details of independent living. Up until now, the GDSACP staff have received very little training in the field. Constant guidance and monitoring of the deinstitutionalization process The autonomy of persons with disabilities must be respected. In order to be able to choose either their place of residence or a daily living arrangement, persons with disabilities have to be informed about their options, be able to test them, and then 441 Both European strategies regarding persons with disabilities mention participation as one of the eight main areas for action, including the right to choose where and how to live. More concretely, one of the objectives is to “achieve full participation of persons with disabilities in society by […] providing quality community-based services, including access to personal assistance” (European Commission, 2020c; Council of Europe, 2017). 442 The NSPD 2016-2020 provides for the development of a National Plan for the Deinstitutionalization of Adults with Disabilities, which has not yet been drawn up. 443 Besides the development of community-based services, which will be addressed in the following subchapter. 205 Social services and independent living decide. Autonomy and self-determination are essential for making decisions about where they live, with whom they live, and what services they need.444 Staff of centers should make appropriate accommodations for persons with comprehension and speech difficulties who cannot express themselves verbally and need substantial support making decisions so that they are not ignored or neglected in this process.445 Furthermore, their opinions about their living arrangements should be considered, along with the human relationships that they have developed over time to make sure that deinstitutionalization is not an abusive and traumatic process. Presently, the autonomy of persons with disabilities is at risk of being violated by the deinstitutionalization process. According to the qualitative research, although the law states that institutionalized persons with disabilities must be informed about available services and housing options, this often does not happen in practice. Without adequate support, persons with disabilities sometimes do not understand and do not always know how the local community is organized and how they can access different services outside their residential setting. They receive most of services inside the residential care center, from counseling and recovery services to personal care (like haircuts) and socialization services, which considerably reduces their contact with the community. The deinstitutionalization process must not lead to situations where the beneficiaries are transferred to other services without their involvement, consultation, or approval simply to reduce the number of residents. The NARPDCA is working on a methodology for monitoring the implementation of the restructuring plans and reorganization of residential care centers. According to the legislation, the NARPDCA has to monitor the implementation of restructuring plans446 and the steps set out in the substantiation note447 for the reorganization process. The NARPDCA is currently developing monitoring instruments with specific tools for assessing key aspects of deinstitutionalization, such as: (i) plans for the restructuring process (including consultation/information sessions with residents); (ii) beneficiary assessments conducted with the input of residents to identify the best solution based on the preferences of each person; (iii) the identification of actual accommodation/exit solutions with beneficiary involvement; (iv) types of services proposed to be developed (sheltered houses, day centers, other smaller residential centers) and the extent to which they would be connected to the community or segregated; and (v) beneficiary assessments of the extent to which they are living independently in the centers where they are currently accommodated. This methodology should be regularly used for all 444 Autonomy should not be interpreted as the ability to carry out activities of daily living on one’s own, but as freedom of choice and control based on respect for inherent dignity and individual autonomy as enshrined in Art. 3 (a) of the Convention. 445 It is normally assumed that persons with intellectual disabilities, especially those with complex communication requirements, cannot live independently in the community or that the personalized services they need are more expensive than residential care services. That practice is contrary to the CRPD provisions requiring the State parties to actively ensure that all persons with disabilities enjoy the right to live independently, regardless of their level of intellectual capacity, autonomy, and support requirements (CRPD Committee, 2017, para. (21)). Moreover, persons with disabilities who have high support needs are most affected by the lack of appropriate services (Human Rights Council, 2017c, para (18)). 446 Centers undergoing the restructuring process (with a capacity of more than 50 beneficiaries) must prepare Restructuring Plans, which focus on the elements of programming, organizing, and coordinating actions during the process of reducing the number of beneficiaries. This includes, but is not limited to: (i) presenting the current situation; (ii) an analysis of the evaluation of the beneficiaries; (iii) planning the restructuring steps, including financial, material, and human resources, and implementation modalities in parallel with setting objectives for other alternative services to the residential institutions or preventive measures developed in the community; (iv) community-based analysis; and (v) monitoring and evaluation of the restructuring process (Decision no. 878/2018, Art. 12). 447 The centers undergoing reorganization (with a capacity of less than 50 beneficiaries) must prepare Substantiation Notes based on the data obtained from the evaluation of their beneficiaries, in order to re-establish the institution according to the new types of residential centers. The substantiation note shall include at minimum: (i) a description of the proximity to the means of transport, access to community services; (ii) the activities to be carried out in the new type of center once it will be reorganized in accordance with the requirements of the specific mandatory minimum quality standards; (iii) the structure of the staff that will provide the activities and services; and (iv) the results obtained from the evaluation of the beneficiaries (Decision No 877/2018, Art. 28). 206 Social services and independent living residential care centers with Restructuring Plans or Substantiation Notes to make sure that the best solutions are adopted for each beneficiary. The NARPDCA’s mechanism to provide national guidance on deinstitutionalization is not fully functional. To accelerate deinstitutionalization, strong central guidance is needed, which means ensuring that GDSACPs and other county authorities agree that deinstitutionalization is important and that skipping certain steps could have a negative impact on the autonomy of persons with disabilities. In addition, constant methodological support should be provided to stakeholders involved in the process. The NARPDCA runs a Monitoring Service for the Deinstitutionalization of Adults and the Transition to Life in the Community which, among other things, “provides methodological guidance on the implementation of legal provisions concerning deinstitutionalization, the prevention of institutionalization, the development of family-type alternatives, and the transition to life in the community.”448 However, this service has only limited responsibilities, such as guiding the restructuring and reorganization of residential care centers, and lacks the staffing required for a large-scale deinstitutionalization process. Sustained funding for the deinstitutionalization process Romania had access to European and national funds for the deinstitutionalization process, but they were inefficiently used and were sometimes used in conflict with CRPD guidelines. For the 2015-2023 period, Romania has committed to reducing by 1,300 the number of adults living in old-type institutions with the use of both national and European funding.449 However, between 2015 and 2020, the Regional Operational Program (ROP) provided funding to only 18 centers for restructuring in seven counties.450 In the same period, two calls were opened on deinstitutionalization under the Human Capital Operational Program (HCOP), but they were mainly aimed at providing services related to sheltered houses and day centers set up under the ROP, which significantly reduced the number of potential beneficiaries.451 The NARPDCA allocated €22 million from the state budget under a National Interest Program, but only for building sheltered houses and day centers.452 Moreover, some of those undertakings did not include solutions that were in accordance with the provisions set out in the Convention.453 For example, the construction of sheltered houses could be a cover for re-institutionalization in a friendlier setting, with a complex of homes of low capacity located near the residential care center and serviced by a day center, which would actually lead to services being highly concentrated.454 448 NARPDCA Order no. 136/2020. 449 Substantiation note to GD no. 193/2018 on the approval of the National Interest Program in the field of protection and promotion of the rights of persons with disabilities: “Establishment of social services to ensure the transition of young persons with disabilities from the child protection system to the system for the protection of adults with disabilities”. 450 Under the Regional Operational Program, the Ministry of European Funds (at present, the Ministry of Investments and European Projects) allocated €16 million as part of ROP/8/8.1/8.3/B/1 for the development of social service infrastructure. In 2018-2019, Regional Development Agencies concluded financing agreements with the General Directorates for Social Assistance and Child Protection from the counties of Argeş, Bacău, Prahova, Timiş, Tulcea, Vaslui, and Vrancea. Those agreements were to finance 18 projects with a total of 57 supportive housing facilities and 15 day centers for 460 institutionalized persons with disabilities. 451 Namely, calls 462 and 463, “Deinstitutionalization of adults with disabilities – Transition to community-based social services.” 452 Financing agreements were concluded with the General Directorates for Social Assistance and Child Protection from the counties of Vrancea, Vaslui, Bacău, Neamț, Cluj, Iași, Brăila, Constanța, Arad, Buzău, Suceava, Maramureș, Bistrița, Bucharest- District 2, Botoșani, Brașov, and Giurgiu. Funding was provided to 50 projects for the construction of 60 supportive housing facilities and 20 day centers for 660 institutionalized persons with disabilities. 453 In particular, Art. 19 concerning the right of persons with disabilities to live in the community, choosing with whom, where, and when to live. In 2019, following an inquiry conducted in Hungary to evaluate the respect for disability rights, the CRPD Committee concluded that the use of European funds for building small-scale institutions as supportive housing facilities constituted a violation of Art. 19 (CRPD Committee, 2019e, para. (101) let. d), f), g)). 454 Mijatovic (2018a). In the case of Hungary, the CRPD Committee concluded that the concentration of services around the newly created supportive housing facilities, especially those set up in small and remote rural communities, had not been paired with the development of accessible services in the community (CRPD Committee, 2019e, para. (70)). 207 Social services and independent living BOX 34 Perspectives on the institutionalization of persons with disabilities “I wouldn’t choose regular housing. It is better to be more people together, to live with other people is a whole different thing; I am tired of being alone, I was alone for 23 years. With all the good and the bad, this is our life.” (Institutionalized person with disabilities) “[It was better living with my family as opposed to] these centers. I was happier there, I had much more freedom, calm and peace. I ate better there too, as opposed to here, and I had my own schedule, [I did] whatever I wanted.” (Institutionalized person with disabilities) “I don’t want to end up in another center. I want to stand on my own two feet, in a rented home.” (Person with disabilities, Bihor county) “The way in which (institutionalized persons with disabilities) now live barely respects their human dignity. We try to offer them decent living conditions, but when it comes to actual rehabilitation, individualized services, we must admit that we are not at the advanced level at which we would like to be or that persons with disabilities deserve.” (GDSACP representative) “When some of them remain hospitalized in the psychiatric ward, and no one comes looking for them… they reach to us to take measures… What measures can we take? We don’t have a shelter, a night shelter, somewhere for them to sleep… And you, as a Mayoralty, what can you do? We try to resort to shame, it’s a small town, everybody knows everybody: ‘Think of your father who raised you…’ That is all we can do.” (PSAS representative, Cluj county) “I wouldn’t want for my child to be in a center, I chose to sacrifice my youth, it was like house arrest for my whole life, you are bound to him (as a parent), even if you manage to escape, your thoughts are still at home. I sacrificed myself willingly, that is how I felt, as a mother – as long as my health allows it, I will not send him to a center.” (Representative of a person with disabilities, personal assistant, Dâmbovița county) “Between 1987 and 2009, when I received my permanent disability certificate, I went to gymnastics classes daily, for 2-3 hours, also neurological and psychiatric treatment… I haven’t undergone speech therapy, because I received support from my family, from my brothers, I am with my biological family. I read a lot in order not to lose my vocabulary. I should have been in a center, but, for a normal development, the doctor’s decision was to have me stay with my family. My brothers introduced me to the world of books and society. Now I am fairly autonomous, I stayed at home to care for my parents, my brothers left home; 98 percent of the things that a normal person has to do, I can do, except for preparing a homemade meal. I care for my father, who is bed-bound, I care for my nephews.” (Person with disabilities, Ialomița county) Source: World Bank qualitative research (February-May 2020). 208 Social services and independent living Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to elaborate a strategic framework for the deinstitutionalization of adults with disabilities. 2 The NARPDCA to prepare deinstitutionalization guidelines along with specific assessment and reporting instruments for beneficiaries and residential care centers. 3 The NARPDCA to provide training at county/local level to those involved in the deinstitutionalization process. 4 The NARPDCA and General Directorates for Social Assistance and Child Protection (GDSACPs) to develop a methodology for monitoring the deinstitutionalization and publish online monitoring reports on the state of deinstitutionalization by centers, counties, and at the national level at least once a year. 5 The NARPDCA to enhance its capacity and role in providing methodological coordination on deinstitutionalization to the GDSACPs. 6 The Ministry of Investments and European Projects (MIEP) to appropriately finance projects aimed at deinstitutionalization in the next programming period so that a significant number of persons can benefit from the best solutions available in the community.455 455 To consider both public and private providers, and to allow the rental of dwellings. 209 Social services and independent living The limited access to community social IN SHORT 5.3 5.3 Limited services access to necessary the for community living independent social services necessary for independent living What are the rights of persons with disabilities? Every person has the right to live independently. For persons with disabilities, the exercise of this right implies that they have the possibility to decide and control all of the aspects of their lives. What is the situation in Romania? In Romania, there are very few community-based services for persons with disabilities. Respite or 1,900 crisis centers are almost non-existent, as are home in 2015 care services, and mobile teams exist in only 20 localities. Between 2015 and 2019, the number of 1,600 beneficiaries of non-residential public social in 2019 services decreased from about 1,900 to 1,600. What are the causes of this problem? There are three types of support services for persons with disabilities living independently in the community: Services with accommodation such as respite centers, crisis centers, and 1 sheltered housing sheltered houses 4x respite 2x crisis 100 144 centers centers in 2015 in 2020 As of June, 2020, there were only four respite centers and two crisis centers in Romania. Between 2015 and 2020, the number of sheltered houses increased from 100 to 144, but in practice, sheltered houses can provide institutional care and must, in any case, be temporary services in the transition of persons with disabilities to the community. 210 Social services and independent living Services provided in day centers, centers for outpatient neuromotor 2 recovery, counseling centers, or assistance and support services for persons with disabilities 78x private 26x public sector The most numerous non-residential public social services are day centers. There are 104 nationwide, of which only 26 are run by the public sector. There is no national record regarding the concrete services they provide and what benefits they bring to persons with disabilities. 104x day centers Care services, such as home care, mobile teams, personal assistants, and 3 professional personal assistants Home care services are very underdeveloped. In 2019, there were only 11 home care services for persons with disabilities in the whole country, with a total of 300 beneficiaries. Mobile teams are almost non-existent, and their role is not defined in the same way in all counties. The government provides persons with severe disabilities with the option of choosing either a personal assistant or a monthly allowance. Personal assistants are hired by the mayoralties, but they are funded from the state budget. In March 2020, 74,186 persons with disabilities had a personal assistant (32 percent of those who could choose between the allowance and the personal assistant). Persons with severe disabilities are sometimes not guaranteed the right to have a personal assistant, and sometimes they cannot make an informed choice between a personal assistant and the allowance. In addition, only 2 percent of these assistants (who are most frequently family members) received any form of training as of 2019. What are the key changes that need to be made? It is necessary that central authorities ensure that the right of persons with disabilities to live independently in the community is widely known and accepted by all the relevant parts involved and by the general population. It is necessary to establish more social services such as respite and also crisis centers and mobile teams. Local authorities need to be better informed about the laws on personal assistants, and all personal assistants need to receive training. 211 Social services and independent living Florin Florin doesn’t have any memories of his family. He spent his childhood living with a professional foster parent in Argeș county, then in 2011 he was moved to another professional foster parent in Bucharest, who taught him to draw and paint. He recalls this period with joy: he went to the market, cooked, he helped the lady to care for her two daughters. In 2014, his professional foster parent passed away, and Florin was taken in by the GDSAPC. Even though he never formally studied painting, Florin remained passionate, and he continues to paint in his free time. In 2018, he signed up as a volunteer to the National Museum of Contemporary Art, and, a few months later, they hired him. He is receiving services from an NGO that supports persons with disabilities to live independently in the community and has recently bought a studio, in which he is very excited to be moving soon. 212 Social services and independent living 5.3 Limited access to the community social services necessary for independent living Having access to social support services is fundamental for persons with disabilities to be able to live independently in the community. Everyone has the right to live independently in society. For persons with disabilities, the exercise of this right implies that they can decide on and control all aspects of their lives, which requires that they can access both services and facilities for the general population. For persons with disabilities, the exercise of this right implies that they can decide456 on and control all aspects of their lives, which requires accessing both services and facilities for the general population457 as well as support services specific to their disability.458 These services must be available, accessible, adequate, and reasonably priced.459 At the same time, these services must be diverse enough to meet the needs and preferences of persons with disabilities and to be controlled by them.460 A lack of social services can lead to the institutionalization or “reinstitutionalization” of persons with disabilities and perpetuate the segregation of persons with disabilities who currently live in institutions.461 Description of the problem Social services in the community are scarce, and there has been no improvement in the last year. In Romania, very few community-based services exist for persons with disabilities. Respite and crisis centers are almost non-existent, and home care services and mobile teams exist in only 20 localities and have a capacity of only 800 beneficiaries (Table 7 and Annex-Table 37). Among non-residential services, the most numerous are day centers, most of which are provided by the private sector. While residential services are provided almost entirely by the public sector, public sector services in the community are underdeveloped. Since 2015, not only has the number of public non-residential services remained at the same low level, but also the total number of beneficiaries has decreased from about 1,900 to 1,600 (Annex-Table 38 and Annex-Table 39). Number of social services according to the register of social services as of TABLE 7 December 31, 2019 Public Private Total Training centers for independent living 1 6 7 Community service and training centers 0 2 2 Respite care/crisis centers 5 0 5 Sheltered houses 90 51 141 Home care services 7 4 11 Home services for adults with disabilities through the mobile team 2 18 20 Day centers 26 78 104 Outpatient neuromotor recovery service centers 14 3 17 Source: MLSP Register of social services. 456 Aspects regarding the limitation of the possibility to decide and to exercise one’s legal capacity, as well as the development of support services in decision-making are analyzed in the chapter: “Effective protection of the rights of persons with disabilities.” 457 CRPD, Art. 19 let. c); OHCHR (2014, para. (43)). 458 CRPD, Art. 19 let. b). 459 Human Rights Council (2017c, para. (57)); CRPD Committee (2017, para. (60)). 460 Examples of services include: personal assistance; housing adaptation; technical support and assistive and support technologies; peer support/counseling; advocacy at the individual level; crisis intervention and emergency services; respite care services; social services; home care services, including in relation to household chores; services for early education and socialization; arrangements to support children in attending mainstream forms of education; extracurricular and support activities for children with disabilities; employment counseling; recovery programs for persons with mental health problems managed by them (Fountain House); housing for persons with a psychiatric history where they can live together but independently of the psychiatric system (Runaway House); support services for managing the tasks of daily life (“Buddy service”); day centers for adults and the elderly; home food delivery services; home health care (EEG, 2012: 88-93). 461 The key issues to be addressed regarding Unequal and Inadequate Access to Social Services in the Community are based on Art. 9, 14, 15, 16, 17, 19, 20, 21, 22, 23, 26, 27, and 28 of the CRPD. 213 Social services and independent living Explanation of the problem The law allows for the development of a variety of services in the community. The existing legal and administrative framework creates the premises for developing social services in the community to address the constantly changing needs of persons with disabilities and regulates their typology and functioning on the basis of minimum quality standards and costs. There are three types of services that could facilitate the independent living of persons with disabilities in the community: (i) accommodation services such as respite care centers, crisis centers, or sheltered housing; (ii) services provided in a day center, outpatient neuromotor recovery services, counseling centers, or support and assistance services for persons with disabilities; and (iii) care services, such as home care, mobile teams, personal assistants, or professional personal assistants.462 This section analyzes the barriers preventing the full development of each of these types of community support. Community accommodation service Respite and crisis centers are almost nonexistent, mainly due to a lack of funding and awareness of their role. In Romania, as of June 30, 2020, there were only four respite care centers and two crisis centers with a total capacity of 29 beneficiaries, all run by the public sector. During the qualitative research, the GDSACP managers said that the main reasons why more of these centers had not been developed were: (i) budgetary constraints; (ii) a lack of demand for such services;463 (iii) the belief that these services should in fact be developed in small rural communities by NGOs and local authorities; (iv) the difficulty of justifying administrative costs and staffing, given that these services have crowded periods alternating with periods when there may be no beneficiaries; and (v) a lack of qualified staff and/or adequate space. The number of sheltered houses has risen sharply in recent years. Sheltered housing is designed in the legislation as a short-term intermediate solution at the community level that constitutes a preliminary step between living in an institution and independent living in the community.464 Sheltered housing has been funded by both the Regional Operational Program (EU funds) and a National Interest Program (state budget), which has made them the most common way in which the numbers of persons with disabilities in residential centers have been reduced.465 Between 2015 and 2020, the number of sheltered houses increased from 100 to 144, and the total number of beneficiaries increased slightly, reaching about 1,000 by June 2020.466 Existing standards of sheltered housing limit the autonomy of beneficiaries. First, the current quality standards require that for a number of sheltered housing units to have a day center that offers activities focused on developing life skills. This is not a good way to increase the autonomy and independence of persons with disabilities because the development of life skills should be done in natural and real-life contexts as 462 The professional personal assistant is attested to provide care and protection to adults with severe or accentuated disabilities, as well as conditions for the involvement of the person with disabilities in activities, in real life situations, to participate in community life and to the exercise of all citizens’ rights. The care is provided at the professional personal assistant’s home (Law no. 448/2006 and subsequent changes). 463 The GDSACP in Dolj county has closed a crisis center due to lack of demand. 464 According to Order no. 82/2019, sheltered housing is the social service that provides accommodation and performs, mainly through the day center, activities corresponding to the specific individual needs of adults with disabilities, for a determined period of time, in order to prepare them for independent living. According to the European Group of Experts on the Transition from Institutional to Community Care, sheltered housing can be developed as part of the deinstitutionalization strategy for only a small minority of institutionalized persons if this alternative has proved to be the most appropriate in that situation (EEG, 2012: 97). 465 The process was initiated since 2005, through the PHARE pre-accession programs. 466 Between 2015 and 2020, the average number of beneficiaries of a sheltered house decreased slightly from 8.5 to 7.2. 214 Social services and independent living adult learning is experiential and beneficiaries should be allowed to make mistakes.467 Second, the current standards set a minimum number of two persons per sheltered house, which limits the possibility of living alone. In practice, sheltered housing can end up providing a type of institutional care. The number of beneficiaries in sheltered houses is often close to their maximum capacity, and there are situations in which it is exceeded according to the current standards.468, 469 The qualitative research revealed situations in which sheltered housing is located either near or next to residential centers undergoing restructuring, which is a disguised form of re-institutionalization since beneficiaries are segregated in special locations and attend day centers specially allocated to them. The qualitative research also suggested that this segregation is exacerbated by a fixed schedule and certain daily group activities, which represents a violation of a person’s right to organize their time and activities as they wish, individually and in a personalized manner according to their needs. Day services provided in non-residential centers The most numerous non-residential public social services are day centers. There are 104 day centers nationwide, of which 26 are public. Their existence is due in part to the obligation for day centers to be established according to the number of sheltered housing units of maximum protection. Some studies have shown that even when persons with intellectual disabilities and mental health problems live in the community, they still do not live a lifestyle comparable to that of persons without disabilities, as the only community service available to them is attending a day center, but there is no evidence that attending centers benefits persons with these particular disabilities.470 The main criticism of day centers is that they often fail to provide persons with disabilities with personal satisfaction,471 meaningful activities specific to adults,472 or support for their entry into the labor market. Outpatient neuromotor recovery services exist in only 17 counties. This is because of a lack of financial resources at the county and local levels for the large investments in infrastructure and equipment required, low demand,473 the lack of specialists and the perception that they should be provided by the health sector, and consequently that the expenses should be reimbursed through each county’s Health Insurance House or sector of Bucharest municipality. Persons with disabilities are not informed about the types of community services that could be available to them. Local authorities justify the absence of community services by citing the lack of demand for such services,474 even though the general public is not informed of the existence of such services. The Romanian population is not used to officially asking for new services from their local authorities, and public consultations and participatory decision-making processes at the local level are still 467 The CRPD Committee points out that services and activities whose provision is conditioned by certain types of residences, such as sheltered housing, violate the autonomy of persons with disabilities, preventing them from exercising their freedom to choose their residence (CRPD Committee, 2017, para. (25)). 468 According to NARPDCA data, as of June 31, 2020, there were 12 sheltered housing units that had more than 10 beneficiaries (which is the maximum capacity according to standards), and a quarter of the sheltered housing units had 9 or 10 beneficiaries. 40 percent of the beneficiaries were in sheltered housing with 10 or more beneficiaries. 469 In many countries in the region, some sheltered housing appears to be small-scale institutions, where living conditions are better than in residential centers, but control is held by specialists the beneficiaries having limited decision-making power. 470 Catty et al. (2007). 471 Kozma et al. (2009). 472 Perrins and Tarr (1998). 473 There is even a situation where such a center has closed due to lack of demand. 474 Information gathered by the World Bank in qualitative research based on a semi-structured interview with the directors of the GDSACP. 215 Social services and independent living rare. As a result, the real needs of local persons are unknown, and there is a lack of proper planning and budgeting of social services and community assistance measures by local authorities. Existence of home care services, mobile teams, and support and assistance services Home care services are underdeveloped, partly due to an expectation that they will be developed only by local authorities. The Home Care Service (HCS) for adults with disabilities provides them with assistance and support at home for a determined period and based on an assessment and identification of their individual needs. The aim of this is to help them to overcome the difficulties that they face in daily living and thus prevent institutionalization.475 Nationwide, in 2019 there were only 11 home care services for persons with disabilities (only two were provided by the public sector), with a total capacity of 300 beneficiaries. GDSACP managers expect these services to be provided by local authorities or NGOs. A lack of funding cannot explain the underdevelopment of this type of service in large localities or counties given that another similar service for the elderly476 has about 250 units in the country catering for a total 13 thousand beneficiaries.477 Home care services are particularly important for persons with disabilities as they can prevent institutionalization and improve their quality of life.478 Mobile teams are almost nonexistent, and their role is unclear to GDSACP representatives. In 2020, there were only 20 accredited services in the country (with only one being provided by the public sector with 20 beneficiaries).479 The interviews with GDSACP representatives carried out as part of the qualitative research showed that not everyone has the same understanding of the concept and content of their activities. While some GDSACPs pointed to the lack of complex assessment specialists needed to develop such a service, others said that they had developed such a team for their residential centers, while other GDSACP representatives have erroneously referred to services addressed to vulnerable groups or the general population, such as social ambulances or even emergency response units, the latter being the responsibility of other types of institutions. As in the case of home care services, the GDSACPs assume that the development of mobile teams is the responsibility of local authorities and NGOs. Personal assistants are the most important and commonly available service for independent living in Romania. Under existing legislation, persons with severe disabilities with a right for a personal assistant can choose between a caregiver allowance of RON 1,348480 or a personal assistant that is to be employed by the local authority where the person with disabilities lives with funds from the state budget. Personal assistants receive a minimum net salary of the same amount as the caregiver allowance (RON 1,348) supplemented by an additional monthly payment depending on their seniority, holiday allowance, or food allowance. As of March 2020, 74,186 persons with disabilities had a personal assistant, representing 32 percent of the total number of all of those eligible to receive a caregiver allowance or a personal assistant. Between 2018 and 2020, the increase in the number of personal assistants was lower 475 Order no. 82/2019, Annex 4. 476 Home care service for elderly, persons with disabilities, or dependent persons. 477 According to MLSP estimates for 2018. 478 Human Rights Council (2015, para. (72)). 479 The service is developed by GDSACP Dolj. 480 Approximately €270. 216 Social services and independent living than the increase in the number of persons receiving caregiver allowances, probably as a result of funding fluctuations from the state budget. Number of persons with a certificate of severe disability with personal FIGURE 25 assistants or a caregiver allowance 2018 2019 2020 Percentage increase 217,177 229,753 231,877 2020 compared to 2018 155,830 157,691 145,055 9% 72,122 73,923 74,186 3% Personal assistants Persons with caregiver allowance Source: GDSACP data, except for the counties of Ialomița and Ilfov. There are large discrepancies among counties and among localities in terms of persons with disabilities who choose a personal assistant rather than the caregiver allowance, which may indicate that they have trouble accessing the personal assistant service. First, there are counties where only 17 percent of persons chose the personal assistant, while in other counties, this share can be as high as 80 percent (Figure 26). Even though the average is 41 percent, in 20 percent of localities, fewer than one in five persons opt for a personal assistant (and in 6 percent of localities, nobody who could choose a personal assistant opts for the caregiver allowance). There are localities with few personal assistants even when they include at least 50 persons eligible for this service, which suggests even more strongly that persons with disabilities have trouble accessing this service (Annex-Table 40). 217 Social services and independent living FIGURE 26 Persons with personal assistants as a percentage of all persons with a personal assistant or caregiver allowance Communes Towns Municipalities Călărași 14% 9 % 14% Bacău 19% 10% 12% Dâmbovița 23 % 18 % 22% Olt 26% 30% 13% Brăila 27 % 31 % 15% Buzău 33 % 46 % 31% Vrancea 33% 14% 49% Sibiu 33 % 25 % 18 % Cluj 34% 16% 23% Argeș 34 % 23 % 14% Mureș 35 % 33 % 19% Vâlcea 37% 32% 14% Neamț 37 % 18% 17% Bihor 37% 43% 15% Galați 38% 34% 22% Bistrița-Năsăud 38 % 39 % 20% Prahova 39% 26% 20% Mehedinți 40 % 43 % 19% Caraș-Severin 41 % 29 % 21% Vaslui 41% 29% 31% Giurgiu 42 % 25 % 15 % Covasna 42% 38% 42% Tulcea 42 % 32 % 19 % Teleorman 42% 61% 39% Hunedoara 43% 30% 29% Timiș 43 % 41 % 24% Sălaj 45% 26% 20% Dolj 45 % 44 % 37% Arad 46 % 44 % 24 % Iași 46% 40% 28% Constanța 48 % 41 % 38% Harghita 49% 44% 35% Brașov 49% 31% 24% Suceava 50 % 46 % 38% Satu Mare 52% 63% 100% Gorj 57 % 56 % 44 % Botoșani 63% 62% 31% Maramureș 68% 48% 29% Alba 79 % 70% 71% Bucharest S1 11% Bucharest S2 14% Bucharest S3 13% Bucharest S4 11% Bucharest S5 18% Bucharest S6 14% Source: GDSACP data, except for the counties of Ialomița and Ilfov. 218 Social services and independent living The qualitative research revealed that many persons with disabilities and/or personal assistants have limited information about their rights. First, persons with disabilities sometimes do not know their rights, and the mayor’s office staff can arbitrarily refuse their request to employ a personal assistant, citing various reasons such as a lack of these positions in the organizational chart, the fact that the personal assistant is not from that locality, or that the person with disabilities has already opted for compensation.481 In such situations, some persons with disabilities get discouraged and give up their application to hire a personal assistant. Second, personal assistants often do not know their rights to the salary or other benefits that they should receive under the law. There are also situations in which personal assistants know their rights, but staff from the mayor’s office deny them these benefits. One possible solution is for personal assistants to sue the mayor’s office for non-compliance with their rights, but these lawsuits are long and costly. Personal assistants do not benefit from the courses they need to do their job properly. Personal assistants need to learn about the relationship between the person with disabilities and the assistant, which is an employer-employee relationship in which the person with disabilities must be in control and define the assistant’s work tasks and the ways in which he or she wants to be helped. Personal assistants must learn what their role should be in the three types of activities: (i) basic activities of daily living (such as getting out of bed, washing, and dressing); (ii) in-house activities (such as cleaning and cooking); and (iii) community activities. Personal assistants should learn how to build a relationship with the person with disabilities, which involves attitudinal skills, communication skills, and stress and conflict management. Finally, personal assistants should learn techniques for handling and transferring the person with disabilities and first aid. However, in practice, very few of such courses exist. In 2019, courses were organized for personal assistants in only 10 counties, and less than 2 percent of the total number of personal assistants in those counties participated.482 Number of courses for care personnel persons with disabilities/the elderly TABLE 8 and number of participants, 2019 Professional Caregivers Personal personal for the assistants assistants elderly Number of course offers 27 2 38 Number of course offers with at least one organized 17 1 38 course Total number of participants 1,332 35 1,615 Number of counties with at least one course organized 10 1 17 Source: NAPSI data. Personal assistance is an essential service for ensuring independent decision making and the control necessary for independent living and must be managed entirely by the person with disabilities concerned. Firstly, according to the provisions of the CRPD, persons with disabilities should be able to customize their personal assistance service: (i) to plan how it is provided to them (by whom, how, when, where, and in what way, to what extent) and (ii) to train and guide the service provider.483 Secondly, they should be able to contract the service directly from a provider or hire 481 In fact, the Mayoralty is obliged to add the respective job in the organizational chart, the person with disabilities is the one that has to meet the criterion of origin from the locality, and the person with disabilities has the possibility to review his/her option. 482 It is very likely that some of the participants were not personal assistants, which makes the percentage of total personal assistants even lower. 483 CRPD Committee (2017, para. (16) let. d) ii)). 219 Social services and independent living personal assistants directly.484 Currently, according to the law, Mayoralties are the only employers of personal assistants, which considerably limits the access to other ways of contracting this service for persons with disabilities and, consequently, their possibility to customize this service. Furthermore, although hiring personal assistants can only be done with the written consent of the respective person with disabilities regarding the person applying for this position, there is currently no other procedure for Mayoralties to ensure that persons with disabilities can control how this service is provided after the hiring. Moreover, the law only stipulates the obligation for personal assistants to provide the activities and services set out in the individual service plan (ISP),485 but not to respect the preferences of persons with disabilities as to how they wish the service to be provided to them and to be guided by the persons with disabilities in this regard. Thus, the control over the activity carried out by personal assistants, control performed exclusively by the general directorates of social assistance,486 cannot capture the extent to which persons with disabilities exercise their choices and control over the provision of this service. The manner and costs of providing the personal assistance service must reflect the needs of the person with disabilities. Personal assistance can cover a wide range of activities intended to assist persons with disabilities in their daily lives-for example, with getting up, bathing, dressing, cooking, cleaning, shopping, getting ready for work and social activities, participating in community life, communication, or transportation. As a State party to the CRPD, Romania must ensure access to individualized personal assistance depending on the type and intensity of the support needs, which may vary from person to person, from a few hours a day or a week to full-time support,487 only with certain activities or with all the daily activities. At the same time, this support can be provided by several personal assistants, depending on the diversity of the person’s needs. Currently, only persons with severe disabilities can benefit from the personal assistance service, according to a working schedule that cannot exceed 8 hours/ day and 40 hours/week, provided under an individual employment contract, by a single personal assistant, regardless of the individual support needs of the person with disabilities.488 The personal budget can provide a higher control over the provision of the personal assistance service. According to the provisions of the CRPD, the budget for the personal assistance service must take into account the individual needs and circumstances of the person with disabilities and aim to ensure decent working conditions for personal assistants.489 It must be allocated directly to and controlled by the person with disabilities so that the person be able to contract and receive the type of personal assistance he or she needs490 (Box 35). At this point, a person with severe disabilities must choose between the caregiver allowance and a personal assistant employed by the Mayoralty. The allowance is thus the only type of direct payment made to persons with disabilities that could allow them to contract this service directly but its amount does not vary according to the expenses that may arise from contracting services tailored to the needs of each person. 484 CRPD Committee (2017, para. (16) let. d) ii)). 485 Law no. 448/2006, Art. 38 let. c). 486 Law no. 448/2006, Art. 40 para. (2). 487 Human Rights Council (2017, para. (82)). 488 In comparison, the “Assistance for Independent Living” program, implemented by the Municipality of Sofia in 2008, provides up to 300 hours of personal assistance per month to any person with disabilities eligible, depending on the assessed needs, and the person can choose up to five personal assistants. The service may be provided by the municipality or by other organizations licensed as service providers (Angelova-Mladenova, 2019). 489 CRPD Committee (2017, para. (16) let. d) i)). 490 CRPD Committee (2017, para. (16) let. d) i)). 220 Social services and independent living BOX 35 Examples of personal budgets implemented in European Union countries In Sweden, the Act concerning Support and Service for Persons with Certain Functional Impairments and the Assistance Benefit Act, adopted by the Swedish Parliament in 1993, reformed the way in which social assistance was provided. The assistance benefit is transferred directly to the person with disabilities in the form of an amount equivalent to a total number of hours of assistance, depending on individual needs. There is no maximum number of hours that can be allocated to a person, taking into account that certain persons with disabilities need assistance 24/7. In 2015, the average number of hours of weekly assistance was 127. The personal budget is covered by the Swedish Social Insurance Agency (Försäkringskassan) for the number of hours exceeding 20 hours per week, while municipalities cover the costs for the first 20 hours. In the Flanders region in Belgium, Personal Assistance Budgets were approved in 2000 and are covered by the Ministry of Social Protection and administered by the Flemish Agency for Persons with Disabilities (VAPH). These give persons with disabilities (or their representatives), rather than the service provider, the possibility to control the budget and the way in which personal assistance is provided: by whom, for what tasks, for how long, where, and how. A multidisciplinary team evaluates and decides the annual budget for each person, depending on their support needs, and re-evaluations can take place once a year. Following the evaluation, a person does not receive an amount equivalent to a number of hours, but a fixed budget, and (s)he will later set the hourly rate of the personal assistant. In 2014, the total amount allocated for personal budgets was €90 million, and varied between €9,643 and €45,000, depending on the needs of each person. Sources: Angelova-Mladenova (2019), Zero Project: https://zeroproject.org/policy/flanders/ and ENIL (2013). Professional personal assistance is a social service that provides care and protection to persons with disabilities at the personal assistant’s home. According to the law, persons with severe or accentuated disabilities who do not have a place to live, an income, or for whom the income earned is lower than the average national salary,491 can receive the services of a professional personal assistant.492 According to the CRPD Committee, this type of “package” solution that makes the provision of the service conditional upon a certain type of residence (in this case, that of the professional personal assistant) is not in accordance with the provisions of Art. 19.493 Furthermore, the professional personal assistance service violates the provisions of the CRPD in other respects as well: (i) the employment of a professional personal assistant is exclusively mediated by the GDSACP; (ii) the training of the assistant is not carried out by involving the person with disabilities concerned; and (iii) the person does not receive a personal or customized budget to directly contract the service or for daily expenses.494 All these aspects have the potential to generate a conflict of interest that may limit the autonomy and control of the person with disabilities over daily life decisions related to housing, expenditure management, and the form of personal assistance activities provided. As a State party to the CRPD, Romania should make sure that the design of the professional personal assistance service is in line with the provisions of the CRPD and that it should only be provided in the short run, as a solution of transition to community living. Currently, although each GDSACP is supposed to provide a professional personal assistance service, this is not the case in most counties. As of August 2020, 16 GDSACPs had 238 professional personal assistant positions included in their organizational 491 Law no. 448/2006, Art. 45 para. (1). 492 Other than the spouse or direct relatives. 493 CRPD Committee (2017, para. (17)). The obligation to separate residence from service provision is reiterated by the European Expert Group on the Transition from Institutional to Community-Based Care (EEG, 2012: 84). Moreover, the first design models for the personal assistance service according to the principles of independent living established that the term “personal assistance” could not be used to describe services that provide, within the same package, housing solutions and assistance with daily activities (Ratzka (ed.), 2004). 494 The monthly disability allowance representing the monthly housing, food and equipment expenses for the person with disabilities is transferred to the professional personal assistant (Law no. 448/2006, Art. 46). 221 Social services and independent living charts, but only three of them had actually hired a total of 21 such professionals. In the qualitative research, the GDSACP representatives justified the lack of professional personal assistants by citing the lack of training courses or the long duration of these courses, a lack of funding, and the extremely low number of applicants. Finally, one of the problems mentioned by the GDSACP representatives was that the job of a professional personal assistant is to provide home care and protection for an adult with a serious or severe disability,495 which makes it less likely to have applicants for this position. Currently, no assistance and support services are provided for adults with disabilities. Assistance and support services constitute a set of activities496 required to meet the specific individual needs of adults with disabilities and of their family members or their representatives in order to prevent them from being institutionalized. At present, there are no such services being provided in Romania.497 One of the reasons might be the lack of familiarity among the GDSACP representatives with the mandate for and the content of this type of service. The interviews with GDSACP representatives indicated that they had misunderstood the nature of the service as either the counseling activity offered in residential centers or as personal assistance. Difficulties in accessing social services in the community BOX 36 “As parents, we ask ourselves what is to become of our children on such a small allowance [personal assistant salary], after we are gone. For this amount, I honestly don’t know who would work for you as a caregiver.” (Representative of a person with disabilities, personal assistant, Cluj county) “Eight hours are stipulated in my work contract as a personal assistant, but it is 24 hours a day. She is my mother and I would care for her anyway, but if it were a stranger instead of me, would they do this 24 hours a day? Caring for an elder is a lost cause and unrewarding; with a child, you know that by caring for him, he will start to walk on his own and be independent, but with an elder person, there is no development.” (Representative of a person with disabilities, personal assistant, Ialomița county) “The benefits are insufficient, but they somewhat help us to provide for ourselves; we limit ourselves to the cheapest services, but it is fine because we can pay for our bills. As a family, you also need leisure moments; if only there were a center that would give accommodation to families for 3 days... You can cover basic costs; you don’t dream of vacationing. And then there are also health problems, and caring for a person with disabilities is a large emotional and physical effort. I have (a health issue) for which I must be hospitalized but I have no one who could stay with the boy.” (Representative of a person with disabilities, personal assistant, Dâmbovița county) “There is a need for centers for persons with disabilities, where they can do activities together, spend their leisure time in a pleasant way, a place where they can bond, enjoy themselves, learn a new skill. Any activity that enables them to interact with normal persons or with similar disabilities, of the same age as my daughter (25 years old), are welcome.” (Representative of a person with disabilities, personal assistant, Dâmbovița county) “We are a licensed independent social service, but the state doesn’t help us in any way. Even though it is the only center that provides these types of services, the Mayoralty doesn’t have a local budget to support our efforts. In terms of self-financing, there is a copayment system for the parents of the child beneficiaries that covers for the social services, the specific therapies needed for children and adults with autism spectrum disorder, all the recovery therapies.” (NGO representative, Ialomița county) 222 Social services and independent living “When it comes to adults, there aren’t any available day centers, recovery centers; furthermore, it is very hard for the family to care for a person with a physical disability, even more so for one with an intellectual disability. To all this, financial problems are added, and the family reaches a point where they prefer to take the person with disabilities to a center, where the person can receive the necessary care.” (NGO representative, Vaslui county) Source: World Bank qualitative research (February-May 2020). Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) and the National Agency for Equal Opportunities (NAEO) to conduct national awareness-raising campaigns for the general public about the right of persons with disabilities to live in the community. 2 The General Directorates for Social Assistance and Child Protection (GDSACPs) together with local authorities and with support from the Ministry of Investments and European Projects (MIEP) to ensure the availability of social services such as respite and crisis centers including through contracting or by establishing them with European funding, and to carry out awareness-raising campaigns among persons with disabilities and their relatives about the existence of such centers. 3 The NARPDCA and GDSACPs to conduct an assessment of how sheltered houses prepare beneficiaries for independent living in the community. 4 GDSACPs and local authorities with support from private social service providers (SSPs) and the MIEP to ensure the availability of social services such as mobile teams for persons with disabilities, also through contracting or by establishing them with European funding. 5 GDSACPs and local authorities with support from private SSPs and the MIEP to ensure the availability of social services such as day centers for adults with disabilities at the community level, also through contracting or by establishing them with European funding, and to carry out awareness activities about the existence and purpose of these services among persons with disabilities and their families. 6 GDSACPs and County Agencies for Payments and Social Inspection (CAPSIs) to conduct campaigns informing local authorities about the law related to the employment of personal assistants, as well as to their rights and obligations in that regard. 7 GDSACPs to conduct awareness campaigns to inform persons with severe disability of their right to choose between employing a personal assistant or receiving the caregiver allowance. 8 The NARPDCA to set up a page with questions and answers on the rights and obligations of personal assistants and their employers. 223 Social services and independent living 9 The NARPDCA to develop a regulatory package for the personal assistant of the person with severe disability that includes: (i) rights and obligations; (ii) training topics; (iii) financing; (iv) quality standard; and (v) ways of assessing the activities carried out for the person with severe disability in order to encourage his or her independent living. 10 The NARPDCA to review and supplement the professional personal assistant regulatory package that includes: (i) evaluation and employment; (ii) training; (iii) rights and obligations; (iii) financing; (iv) quality and cost standard; and (v) monitoring and control. 11 The NARPDCA to review and supplement the regulatory package of the personal assistant and the professional personal assistant in order to ensure the control of the persons with disabilities who use the personal assistance services over how the service is provided regarding: (i) the types of activities; (ii) duration; and (iii) direct involvement in the training of the personal assistant. 12 The NARPDCA to regulate the implementation of personalized budgets to cover the expenses of personal assistance services according to the individual needs of each person with disabilities who needs this service and that allows them to directly contract the service. 13 GDSACPs with support from the MIEP to develop networks of professional personal assistants also by using European funding. 224 Social services and independent living 5.4 5.4 limited access TheProviding access social toto housing social housing IN SHORT What are the rights of persons with disabilities? Social housing is defined as the provision of a dwelling by the state to a person with disabilities with the state subsidizing the rent, in whole or in part. This kind of housing acts as a safety net for a person with disabilities together with other types of social benefits and services. What is the situation in Romania? Demand Not much is known about how much access persons with disabilities have to social housing in Romania, but data from 2014 show that the social housing stock available to the general population is limited, much lower than demand, and of poor quality. Currently, persons with disabilities are not always a priority group in terms of access to such social housing. Supply Some local authorities give more weight to a university degree, a doctoral degree, or a government job than to a disability in the total score used to decide who will be the first to benefit VS from social housing. 225 Social services and independent living What are the causes of this problem? Social housing should be available and, where necessary, should be adapted to meet the needs of persons with disabilities. However, there are no clear requirements in the legislation on what this accessibility cerințe accesibilizare should look like, who should do it, and when. There is no national system for the monitoring of the social housing stock and of the number and type of tenants of this kind of service. There isn’t any program that enables persons with disabilities to rent and adapt houses on the private market, as is the case in other countries. What are the key changes that need to be made? It is crucial that local authorities prioritize persons in situations of vulnerability, including those with disabilities, for access to social housing. A fixed percentage of the total amount of social housing available in the area must be allocated to persons with disabilities. If there is no social housing available at the local level, persons with disabilities as well as persons with other social problems must be able to rent a house on the private market and to have the cost of the rent paid in part by the state. 226 Social services and independent living 5.4 Providing access to social housing Social housing must be available and easily accessible for persons with disabilities.498 The CRPD mentions the obligation of State parties to ensure the access of persons with disabilities to public housing programs.499 Social housing can support their social inclusion by creating a safety and stability net while ensuring access to appropriate housing. In a wider framework, social housing should be seen as a complementary service to the existing social services, part of an integrated approach addressing the whole range of needs of persons with disabilities. Although there is no quantitative information on the access of persons with disabilities to social housing, the qualitative research indicates systematic barriers for persons with disabilities in accessing this type of support. Explanation of the problem The existing legislation mentions persons with disabilities as a priority group for access to social housing. Law no. 448/2006 introduced a priority criterion for renting out dwellings belonging to the state or its administrative-territorial units to persons with disabilities, as well as a waiver of rent for persons with severe and accentuated disabilities who live in social dwellings. Furthermore, Law no. 114/1996 and its revisions specifies that persons with a disability certificate and persons with a first or second degree of work disability as two of the eight major categories of persons defined by law as being entitled to apply for social housing (according to Art. 43).500 In addition, the methodological standards for the implementation of this same law501 defined four additional criteria for prioritizing these eight groups, a medical condition being one of them. The criteria for awarding social housing set by the local authorities does not always support vulnerable groups, including persons with disabilities. The local public authorities decide the criteria, the indicators, and their weights in the final score that determines priority access to social housing, which creates considerable differences between localities. Theoretically, it seems that most mayor’s offices prioritize persons with disabilities or those with a work-related disability (invalidity).502 However, in practice, local authorities often add additional indicators that may not be related to the state of vulnerability or that may not even measure welfare dimensions, which means that the final scores for awarding social housing may not favor the most vulnerable.503 Figure 27 shows how localities are distributed according to the share of the score awarded for disabilities compared to the share given to other indicators that are not among the criteria set out in the legislation for determining the priority for social housing. It can be seen that, in certain cases, higher education, a doctoral degree, or a government job weigh more in the total score than disability. These 498 Social housing is a public housing program. Dwellings are assigned with subsidized rent to persons or families with an economic situation that does not allow them to buy or rent a home under market conditions. They belong to the public domain of the administrative-territorial units and cannot be sold to tenants (Housing Law no. 114/1996, chap. V). 499 CRPD, Art. 28 para. (2), let. d). 500 Together with: persons and families evicted or to be evicted from dwellings returned to former owners; young people up to the age of 35; young people from social welfare institutions who have reached the age of 18; retirees, war veterans, and war widows; the martyred heroes of the Revolution, the people who sacrificed their lives or suffered as a result of the anti- communist workers’ uprising of 1987, people persecuted for political reasons by the communist dictatorship, people deported abroad or imprisoned; and other persons or families entitled thereto. 501 The Methodological Standards for the implementation of the provisions of the Housing Law no. 114/1996 of December 7, 2000. 502 Out of 117 municipalities and cities, over 80 percent (96) give points to “persons with disabilities” and more than half (60) give points for invalidity (Blaj, 2020). 503 A recent analysis of social housing allocation schemes in 117 localities in Romania shows that most local public authorities use between four and ten criteria to establish priority of access to social housing. The criteria cover elements such as the level of education, marital status, employment and total seniority, formal income, age, and sometimes even the absence of vulnerability. At the national level, the criteria are operationalized through more than 450 different indicators (Blaj, 2020). 227 Social services and independent living practices of awarding higher scores to other criteria, especially higher education, than to a person’s medical or living conditions have been denounced before and, in one such case in Cluj-Napoca, the court found them to be illegal and discriminatory.504 Comparison between the scores awarded for disability versus other criteria FIGURE 27 (number of localities where other criteria are present) Higher education 8 2 36 PhD 2 12 Employed 3 2 3 Employed by the state 5 5 13 Maritial status: married 13 7 10 Higher score Equal score Lower score Source: Bla j (2020). There is no national system for monitoring social housing, much less the situation of persons with disabilities who live in these dwellings. The most recent systematic data on the stock of social housing are from 2014 when a census of social housing was conducted by the World Bank and the Ministry of Development, Public Works, and Administration in order to prepare the National Strategy on Poverty Reduction and the Promotion of Social Inclusion. Since then, no data have been collected about the housing stock, its condition, use, or administration by the Ministry. The MLSP proposed505 replacing the system of indicators legislated in 2005506 with three new indicators (the Central Set of Key Social Indicators)507 that would be monitored annually, but this system has not yet been approved and would not make it possible to disaggregate the data on beneficiaries’ disability or on the accessibility of the housing stock. The stock of social housing in Romania should include dwellings that are accessible for persons with disabilities, but the legislative provisions are not sufficiently binding. The qualitative research revealed that, even when persons with disabilities are given priority access to social housing, many of these houses cannot be actually used by persons in wheelchairs because of, for example, a lack of ramps, too narrow door frames, or ill-adapted bathrooms. The legislative provision in Art. 20 of Law no. 448/2006 refers to the need to locate housing for persons with disabilities on the lower levels of buildings but does not mention their specific accessibility requirements. This state of affairs makes possible such extreme cases as that of a 55-year-old mother with disabilities who lives and cares for her 30-year-old son who is immobilized in bed in a 13 square meter studio that is completely inaccessible.508 In this case, appropriate support would mean a dwelling made adequately accessible and equipped according to the types of disabilities of the two persons, together with home support services to 504 Details regarding the appeal of the NCCD decision no. 531/2017 can be found at: https://www.desire-ro.eu/?p=3601 505 The proposal was made as part of the project “Increase the efficiency of interventions both at the level of the Ministry of Labor and Social Protection and of the structures that it coordinates” co-financed from the European Social Fund through the Operational Program Administrative Capacity, implemented by the MLSP with technical assistance from the World Bank. 506 GD no. 488/2005. 507 The three indicators are: (i) the number of families/individuals in social housing; (ii) the number of applications for social housing, of which how many are eligible applications; and (iii) the stock of social housing, of which how much is completed or under construction. The three indicators would be collected annually by the Ministry of Development, Public Works, and Administration. 508 Case identified on the field, in a social housing complex in Bucharest, during the research conducted in March 2020 by the World Bank for the substantiation study for the Development Strategy of the Municipality of Bucharest. 228 Social services and independent living meet their current needs.509 The stock of social housing is extremely limited, and there are no alternative programs to compensate for this shortage. First of all, most social housing exists in urban areas and, even there, almost one-third of the localities have no stock.510 Data from 2014 indicated a stock of about 30 thousand social housing units compared with about 67 thousand applications that had already submitted. Moreover, few dwellings have appropriate conditions, usually being small and old, with damaged common areas and services such as electricity, sewerage, and water supply, which are either missing or have been cut off because of the non-payment of bills. Yet, while social housing is either inadequate or even missing, there is no other financial support mechanism (such as a subsidy, voucher, or customized budget) that would offset or cover the rent for a normal dwelling for a person with disabilities (a model of such a program that is operating in Ireland is presented in Box 37). Support mechanisms for social housing and housing accessibility in Ireland BOX 37 An example of facilitated access to social housing for persons and households with social difficulties is provided by the Housing Assistance Payment program in Ireland. In this program, local authorities help persons with disabilities by paying part of their rent to enable them to access social housing. The local authority undertakes to pay the person’s rent directly to the landlord with the value of the rent varying depending on the area in which the property is located, on the size of the applicant household, and on the free market value of the rent in that area. The tenant, who is the beneficiary of the program, has to pay back part of the rent to the local authority, the amount of which is calculated depending on her or his income. There are criteria for eligibility for this program (income, availability of suitable housing alternatives, debt related to rent, right of residence). Housing support is normally expected to be provided for about two years (after which the tenant has the right to apply once again for support). Once the housing support is approved, the tenant receives a standard set of information (the “tenant pack”) containing a leaflet with information for the tenant, a leaflet with information for the landlord, the “housing assistance payment” application form, and the maximum amount of rent to be paid by the local authority. There are certain situations in which the rent payment by the local authority can be suspended, such as if the property is sub-standard, the landlord is not tax compliant, the tenant fails to pay the differential rent, or the beneficiary tenant engages in antisocial behavior. Source: Republic of Ireland Housing Agency (2018). Another important challenge regarding social housing for persons with disabilities is the lack of coordination between social services and the local services responsible for providing social housing. Persons with disabilities, just like other categories of vulnerable persons, need support in order to understand the necessary procedures to apply for social housing and fill in all of the necessary documents. Persons with disabilities leaving the residential system, in turn, need services to help them transition into unassisted housing.511 Social housing is mentioned in several pieces of legislation that regulate the activity of several central and/or local institutions or services512 and is recognized as a basic element in the fight against social exclusion and poverty. However, according to the operational definitions used by Law no. 292/2011 on social 509 For this to happen, the Housing Service should work with the GDSACP, social housing allocation should be made based on a complex social survey, and integrated efforts should focus on maintenance and integration in the community so as to avoid institutionalization. 510 According to Teșliuc et al. (coord.) (2015). 511 These independent living support services (assisted housing) are generally provided by authorized service providers (public or private) and prepare persons to become financially independent and to manage all of the obligations related to having a dwelling (such as rent payments and dwelling maintenance, cleaning, interior design or relationships with neighbors). 512 Housing Law no. 114/1996, Law no. 215/2001 on Local Public Administration, Law no. 116/2002 on Fighting Marginalization, or Law no. 292/2011 on social assistance. 229 Social services and independent living assistance,513 social housing is not considered to be a social service, nor is it seen as part of a package of complementary social services. This is strongly associated with a lack of coordination between the institutions with responsibilities in the social housing sector and those with responsibilities in terms of social assistance and services, at both the central and local authority levels. Problems regarding the accessibility of social housing BOX 38 “When I was allocated my social housing studio, even though they had my file at the Mayoralty, I received the studio on the second floor, even though an employee had come to see how hard it was for me to go up the stairs. When I asked why I didn’t get one on the ground floor, since I was the first on the list, they told me that I was out of luck. I suggested to have an elevator installed, but their reply was that it would ruin the building’s architecture. Even though I called, complained, explained the situation, and why it was necessary for me to live on the ground floor, the solution came from a neighbor who swapped flats with me (allowing me to move from the second floor to the ground floor).” (Person with disabilities, Ialomița county) Source: World Bank qualitative research (February-May 2020). Recommended measures The following measures are recommended: 1 The Ministry of Development, Public Works, and Administration (MDPWA) to amend the Rules for the Housing Law to increase the role of indicators related to vulnerability in the criteria for granting social housing and to allocate a minimum stock of accessible social dwellings for persons with disabilities in each municipality.514 2 The MDPWA, the Ministry of Labor and Social Protection (MLSP), and the Ministry of Investments and European Projects (MIEP) to establish a social housing benefit to be granted by the local authorities in partnership with the public social assistance services which are responsible for administering and supporting the program application process, that should be accessible to persons belonging to vulnerable groups, with or without disabilities, in order to have had partial or full subsidized rent in situations where the stock of social housing is not sufficient to meet the demand. 3 The MLSP to approve and monitor the Central Set of Key Social Inclusion Indicators that would gather disaggregated data on social housing accessibility and the number of persons with disabilities in order to properly modify policies in this sector. 513 Law no. 292/2011 on social assistance, Art. 30 para. (3) let. a). According to the assisting regime, social services are classified by: (i) services with accommodation, for a determined or indefinite period: residential centers, sheltered houses or night shelters; or (ii) services without accommodation: day centers, centers, and/or home care units, social canteens, mobile food services or social ambulance. 514 Given that two of the eight priority groups provided for by the law are persons with disabilities/an invalidity, the share for these two groups could be 25 percent of the total social housing stock. 230 Education 6. Education 6. Alex Alex was born prematurely at eight months. When he was four months old, his mother noticed that something was wrong. His first diagnosis was motor retardation, and Alex began doing physical therapy twice a day. He was then diagnosed with spastic tetraparesis. Alex started walking around the age of two and a half years. His mother recalls that: “He was walking quite chaotically, he didn’t respond when I called him, he walked on his tiptoes, his hands hurt, something was still wrong for a child his age. We again went to a check-up and received the diagnosis of Autistic Spectrum Disorder and medication treatment, even though he was such a little child. It was a very big blow. We started therapy at home, but ten years ago, things were extremely difficult, they didn’t know as much about autism as today. I didn’t even get the disability certificate then.” Thanks to the perseverance of both Alex and his parents, as well as the support of professionals, at the age of seven he started using complete words and making himself understood for the first time. Educație 6 Education IN SHORT What are the rights of persons with disabilities? All children and young persons with disabilities have the right to a quality education in the kindergartens and the primary, secondary, vocational, and technical schools in their communities as well as the right to attend university. Students with disabilities should not only attend school but also be able to do so in conditions adapted to their needs so that they are able to learn just like the other students. Teachers working with students with disabilities should have special training and should be sufficient in number to provide them with adequate help. To be able to learn, students with disabilities also need the support of other specialists such as support teachers, professional school facilitators or personal assistants, many of whom work with them individually. Students with disabilities are likely to have different needs than other students in terms of how they learn, what they learn, and their pace of learning. These comprise their special educational needs. The government should provide schools with the necessary support to enable them to meet these needs through, for example, smaller class sizes, special textbooks, adapted curricula and teaching methods, and materials tailored to the needs of students with different kinds of disabilities. Some students with disabilities cannot learn unless they also receive adequate therapies (such as speech therapy or physical therapy) in parallel with their schooling. The best results are obtained when these therapies are provided by specialists who do not have to be part of the school staff but work together with the teachers. 232 Education Students with disabilities require special conditions to access school buildings and to attend classes. For example, students who use wheelchairs need access ramps, wide enough corridors, and adapted desks and bathrooms. Students with sight impairments need to have information written in bigger fonts and/or capital letters and, in some cases, audio signals to guide them. To attend university, persons with disabilities should be able to access all of the general resources provided by the universities to all of their students. Also, they need dorm rooms that are specially adapted to their needs. What are the main problems related to education in Romania? The analysis of the situation in Romania has revealed two main problems: 1 Limited access to quality education at all pre-university levels Some children with disabilities never go to school or even if they do, they do not receive an education of adequate quality. 2 Limited access to tertiary education Many persons with disabilities do not attend college. Universities do not offer suitable conditions for students with disabilities. 233 Education 6 Education Children and young persons with disabilities and/or special educational needs (SEN) must have access to inclusive and quality education in the community on an equal basis with other students so that they can develop the necessary skills and knowledge to live an independent and fulfilled life. This also reaps benefits for society as a whole by strengthening the solidarity bonds between its members, and by maximizing the potential of each person. Having unfettered access to quality education, including good vocational guidance, will increase the participation of persons with disabilities in tertiary education and help to integrate them into the labor market.515 In this chapter, we analyze the two main problems preventing children and young persons with disabilities from accessing quality education: 1. The limited access to quality education at all pre-university levels. 2. The limited access to tertiary education. 515 The vision and key issues that will be addressed in this chapter are based on Art. 3, 4, 9, 21, 24, 26, and 33 of the CRPD, as well as on the General Comment no. 4 on the right to inclusive education (CRPD Committee, 2016). 234 Education 6.1 6.1 Limited access Limited to quality access education to quality at all education IN SHORT at all pre- pre-university university levels levels What are the rights of persons with disabilities? All students with disabilities should be able to go to school in their communities and to access quality education according to their needs on an equal basis with the other students. What is the situation in Romania? Romania has a large number of children with special educational needs (SEN). Some of them do not attend school or leave school early. Many others do attend school, but the schools do not provide the necessary adaptations to enable them to fulfill their learning potential. 66K There are an estimated 66 thousand students enrolled in education who have been certified as having SEN. However, the actual number of students with special needs is much larger. 1/20 trained Few teachers are trained to work with students with teachers disabilities. Only one teacher out of 20 had taken specialized training courses during the 2019-2020 academic year. Sixty-eight percent of middle schools do not have even one teacher with such specialized training. 47x There are not enough support teachers in Romanian schools, and some schools have none at all. On average, there is one support teacher for every 47 children with disabilities enrolled in mainstream schools. 1x 235 Education In Romania, schools are not physically adapted to meet the needs of children with disabilities. 98 out of 100 Half of all schools do One school classrooms not have out of every are not bathrooms five has no accessible to adapted to access ramp. students in meet the wheelchairs. needs of all children. Students with disabilities who live in rural areas or in the less developed counties have even less access to appropriate learning conditions in schools. What are the causes of this problem? Schools lack the necessary resources to work with students with disabilities, such as a sufficient number of trained teachers and adapted teaching materials. These conditions make it impossible for schools to implement some of the legal provisions, for example, to adapt their curricula for each student with disabilities. The teaching staff is not trained to work with students with disabilities, except for teachers who have pursued a specialization in special education during their university studies. Most teachers do not receive any continuous specialized training. Funding for schools is insufficient in general, which means that very few resources are available for working with students with disabilities. For example, there are not enough support teachers available. As a result, it is impossible for teachers to give students with disabilities the amount of help that they need, as long as they need it. In order to be able to learn, some students with disabilities also need certain therapies. In some counties these therapies are not available at all, while in others, they are not available in mainstream schools. There are wide differences in accessibility among counties and localities depending on their level of development. Any investments that have been made in making schools accessible have been limited and inconsistent. What are the key changes that need to be made? The Ministry of Education must provide the necessary resources to ensure the provision of quality inclusive education. The necessary therapies must be made available in mainstream schools. Special education training should be compulsory for all teachers as part of their initial training, as well as throughout their careers. There must be a national program aimed at making all schools accessible to persons with disabilities. 236 Education Andrei Andrei is a curious, hardworking teenager who is happy to attend classes at a vocational school. He has made many friends there, and his classmates and teachers received him with “warmth and understanding.” Before this however, he had to face negative attitudes from people in the education system. The fact that he has Down syndrome does not prevent him from doing all the things other students do: learn, participate in extracurricular activities, and have fun with his classmates. “Sometimes, I work harder to learn things, but in many ways I'm just like everyone else.” Andrei would like others to know that every person with Down syndrome is unique. “I do things that some people don't think I’m capable of, but with sustained work and encouragement, I succeed. I'm not sad that I have Down syndrome. This is just a part of me. I have parents who love me very much, wonderful classmates and friends who enjoy being and having fun with me. I have teachers who help me keep up and learn new things.” Andrei is passionate about sports, especially swimming. He won several medals, including as a Paralympic athlete. 237 Education 6.1 Limited access to quality education at all pre- university levels Ensuring that children with disabilities have access to a quality and inclusive education requires specifically trained staff and a fully accessible environment. Children with disabilities need an accessible physical, informational, and communications school environment, qualified staff with knowledge of appropriate teaching and assessment methods, and appropriate assistive materials and technologies. The mere participation of children with disabilities in formal mainstream education will not ensure that they learn as they proceed through the educational cycles unless the schools can also provide them with adequate human and material resources and can make reasonable adaptations to their learning conditions to meet their needs. When educational services are offered in tandem with quality therapies appropriate to each individual with disabilities, then optimal results can be achieved. The Romanian state certifies the disability of a child in two ways – through the social assistance system and/or within the national pre-university education system. In the first case, those children who meet certain medical and social criteria can obtain a disability certificate. In the second case, the County Centers for Resources and Educational Assistance (CCREAs) may issue a SEN certificate for those children with deficiencies who need dedicated assistance (either in mainstream or special education schools) to be able to complete the period of schooling. There are children with a disability certificate without SEN and for whom there is no need to obtain a SEN certificate,516 while there are also children with SEN who do not meet the criteria for a disability certificate. Description of the problem In Romania, there is a significant group of children with special educational needs who should be able to fully participate in the education system. In the 2018-2019 school year, 66,274 children with a SEN certificate were enrolled in pre-university education across Romania (2.3 percent of school-age children).517 The qualitative research indicated the existence of a larger number of students who do not have a SEN certificate but who could benefit from adaptations and dedicated assistance in mainstream schools.518 In addition, school inspectors, CCREA members, teachers, and school principals reported that the category of students with mental (intellectual)/ psychosocial disabilities is growing at an accelerated pace, which highlights even more the need for adaptions in the school system. There are major deficiencies in the efforts that have been made by the mainstream education system to provide an appropriate inclusive school environment for students with mental/psychological and sensory disabilities. The need to 516 According to the Order no. 1985/1305/5805/2016 for the approval of the methodology for the evaluation and integrated intervention for obtaining a disability certificate, for school and professional guidance of children with special educational needs, and for the habilitation and rehabilitation of children with disabilities and/or special educational needs of the Ministry of Labor, Families, Social Protection and the Elderly (currently the Ministry of Labor and Social Protection), the Ministry of Health and the Ministry of National Education and Scientific Research (currently the Ministry of Education), Chap. II, Art. 5, children with somatic disabilities, HIV/AIDS or rare diseases that do not involve psychological disorders have no special educational needs. Children with sensorial, mental, psychological, and associated disabilities, and those having physical disabilities that impede writing qualify for obtaining a SEN certificate. 517 Calculations made by the World Bank using reports from the County/Bucharest Centers for Resources and Educational Assistance (CCREA)s, the County/Bucharest School Inspectorates (CSIs), and the National Institute of Statistics (NIS). 518 Actors in the education system, especially teaching staff, say that there are eligible students whose parents refuse to apply for a SEN certificate for them for various reasons (such as the fear of an associated stigma), while there are others from disadvantaged socioeconomic backgrounds and families with little interest in their children’s education who also do not have the material resources necessary to obtain the certificate. 238 Education make adaptations for students with physical disabilities only involves ensuring the physical accessibility of the school environment. In the case of children with mental/ psychological disabilities, the requirements are greater and more difficult to meet. There is a need to adapt the curriculum and teaching and assessment methods, and to provide specialized teaching assistance adapted to the needs of each child. Some of the students will also need to participate in various activities of habilitation and rehabilitation, such as different types of therapies, alongside their schooling. In the qualitative research, representatives of the education system and parents of children with disabilities reported that adapting the system to the needs of these students is in most cases only done in theory (in terms of being mentioned in relevant documents) but is not implemented in practice. Little assistance is available from specialized staff such as support teachers, speech therapists, school counselors, or professional school facilitators, and the application of the adapted curriculum is weak. There are a few cases where real adaptation has been achieved, but these have tended to be the result of the exceptional involvement of a teacher and/or parent. In addition, most of the therapies specific to different disabilities are absent in the mainstream schools. Explanation of the problem The NSPD 2016-2020 addresses both the access of persons with disabilities to inclusive education and the quality of that education. However, the defined indicators were vaguely formulated in the strategy, and they have not been used effectively to assess progress towards the strategy’s objectives.519 There have been positive developments in the legal and institutional framework needed for inclusive education, but little has changed at the individual school level. In Romania only a part of students with disabilities and/or SEN have been integrated into mainstream education, whereas the rest are being educated in special schools. The Romanian system continues the practice of providing education for students with special needs in special education institutions that are separate from the mainstream system (from preschool up to the vocational and technical level). In the 1999-2000 school year, many students from special schools (those with mild and moderate deficiencies) were transferred to mainstream schools, but no prior adaptations were made to accommodate their needs.520 This resulted in many of these children dropping out of formal education.521 Substantial adaptations were introduced into the mainstream system only after 2000. The legal framework for inclusive education is extensive, but it lacks a coherent and unitary approach. The main relevant law is the Law no. 1/2011 of National Education, supplemented by a series of corresponding orders and methodologies. In 2011, educational support services for students with SEN integrated in mainstream education were regulated,522 along with the organization of special education.523 Starting in 2016, a common order of the ministries of labor, education, and health 519 For example, the strategy includes as a measure “the involvement of persons with disabilities and their families as equal partners in the process of properly developing the education and training provided by the community” and proposes the use of the indicator “number of persons with disabilities and families of persons with disabilities involved” but does not specify the type of activity in which their involvement should be measured or even define the very concept of involvement. 520 Annex-Figure 1 shows the decrease in the number of students in special schools (primary and middle) up until 2007-2008, after which the numbers stabilized. 521 UNICEF (2012: 36). 522 Order no. 5574/2011 of the Ministry of Education, Research, Youth and Sports approving the methodology for organizing educational support services for SEN children, students, and young persons integrated into mainstream education (currently, Ministry of Education). 523 Order no. 5573/2011 of the Ministry of Education, Research, Youth and Sports approving the regulations for the organization and functioning of special and integrated special education (currently, Ministry of Education). 239 Education attempts to develop an integrated approach to granting social assistance rights (based on the disability certificate), to integration in the formal education system, and to providing rehabilitation services to children with disabilities.524 Although the roles of different actors involved in inclusive education is regulated, there is no single law to integrate all these provisions.525 Accessibility of educational units The physical accessibility of Romanian schools is inadequate. Access to the physical environment of schools is essential to ensure the inclusion of students with disabilities. Students with physical disabilities/locomotor deficiencies may need only some adaptations of the physical environment. However, the results of the NAPSI social inspection campaign conducted in 2020 (see Figure 28) show that many of the entrances to the inspected school buildings are not accessible.526 Only 22 percent of middle schools have an adequate access ramp,527 while only 11 percent have an accessible entrance, and 13 percent of middle schools have an access path that is accessible.528 Very few schools have implemented the necessary accessibility adjustments for persons with sensory disabilities, such as pavements or tactile-visual signals denoting access paths (for the values of indicators calculated only for persons with locomotor disabilities, see Annex-Table 41). Percentage of physically accessible middle schools, 2020 FIGURE 28 Total: Urban: Rural: With adapted, reserved, or signaled parking, or with no parking spaces 87 % 92% 86% With accessible path to enter the building 13% 13% 13% With accessible access ramp or without the need for it 22% 18% 24% With accessible entrance 11% 18% 9% to the building With accessible hallways 94% 94% 94% With accessible interior doors 74% 78% 73% With accessible reception counter/ office or with no counter 67% 69% 66% With accessible elevator/lifting platform/ sidewalks or escalators 36% 24% 40% or with no need for them With accessible bathrooms 3% 6% 2% Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI inMarch-August2020onanationallyrepresentativesampleconsistingof540middleschools(weighteddata). 524 Common Order no. 1985/1305/5805/2016 of the Ministry of Labor, Social Protection and Elderly, Ministry of Health and Ministry of National Education and Scientific Research (at present, Ministry of Labor and Social Protection, Ministry of Health, Ministry of Education). 525 For example, although the support teacher and the school facilitator are both part of the team that has to provide educational services to a child with SEN who is integrated into a mainstream school, the activity of the former is regulated by Order no. 5574/2011, while the activity of the latter is regulated by Order no. 1985/1305/5805/2016. 526 For each indicator, a series of aspects related to the respective feature were inspected, and only if they were all deemed accessible would the institution as a whole be considered to be accessible in accordance with the legal provisions. For a detailed presentation of the indicators, see Annex-Table 42, Annex-Table 43, and Annex-Table 44. 527 Among all of the schools whose entrance is not at ground level, 89 percent have an access ramp, but in many cases this is improperly built (for a detailed presentation of the indicator, see Annex-Table 42). 528 For a detailed presentation of these indicators, see Annex-Table 41. 240 Education The efforts made so far have not ensured the accessibility of the physical environment of most schools. About 64 percent of schools need an elevator to enable students with locomotor disabilities to access the upper floors.529 The toilets in the vast majority of schools are not accessible since only 3 percent of the schools have implemented necessary adaptations.530 The accessibility of the physical environment is worse in schools located in rural areas.531 Beyond access to school buildings, a significant proportion of classrooms, offices, and laboratories are inaccessible. There are schools where no classroom is on an accessible path for persons with locomotor disabilities (9 percent) and even more with no classroom on an accessible path for persons with visual disabilities (45 percent). At the level of classrooms, the situation is much worse. Only half of the classrooms are accessible to children with locomotor disabilities, while only one-third are accessible to children with visual disabilities. Almost half of schools don’t even have a desk or bench for children in wheelchairs, which should be 80 centimeters from the ground. Even if we only consider schools that have at least one child with locomotor disabilities, 35 percent do not have any appropriate bench or desk. Laboratories, medical, and psychologist offices are even less accessible (see Figure 29). Middle schools with at least one accessible classroom, laboratory, psychologist, FIGURE 29 or medical office, 2020 Percentage of schools with at least... A classroom on a path accessible to persons with locomotor disabilities 91% A laboratory on a path accessible to persons with locomotor disabilities* 41% With the medical office located on a path accessible to persons with locomotor disabilities** 9% With the psychologist’s office on a path accessible to persons with locomotor disabilities *** 10% A classroom on a path accessible to persons with visual disabilities 55% A laboratory on a path accessible to persons with visual disabilities* 30% With the medical office located on a path accessible to persons with visual disabilities** 8% With the psychologist’s office on a path accessible to persons with visual disabilities*** 10% Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI inMarch-August2020onanationallyrepresentativesampleconsistingof540middleschools(weighteddata). Notes: * In total units with laboratories. ** In total units with a medical office. *** In total units with psychologist’s office. Investments to increase school accessibility have been inadequate and have not been made in a systematic manner. Those schools that appear to have adequate 529 It is estimated that 36 percent of middle schools are on only one level, and an elevator is not necessary (according to data collected by NAPSI’s social inspection campaign). 530 Only 60 percent of the schools stated that they have accessible toilets, but even among these, only a few were fully accessible, with most of the deficiencies being related to a lack of appropriate alarms (for a detailed presentation of the indicator see Annex-Table 44). 531 The reason why rural schools seem to perform better on some indicators is because a higher proportion of them do not require adaptations to be accessible (such as single-story buildings where there is no need for an elevator and schools with an entrance at ground level where no access ramp is required). 241 Education accessibility tend to be those where either no dedicated investment was required or the required amounts were reduced. In addition, even if the infrastructure taken into consideration for an indicator is mostly adequate, the lack of a specific type of necessary investment makes the school not accessible from the point of view of that indicator. For some of the dimensions, only a minimal investment would be needed to ensure the physical access of children with disabilities to schools. For example, the access path to the building door is considered accessible in 13 percent of schools, but the low value of this indicator is mainly due to the absence of any markings to indicate this access path (such as tactile carpet/paving). If this were provided then, the value of the indicator would rise to 80 percent. Because schools depend on local budgets, differences in financial resources between localities also reflect in situation of educational facilities. Whether adequate funding is provided for the renovation and physical adaptation of schools is often more related to the relationship between school principals and the local authorities rather than to any objective criteria. A national funding program aimed at making the physical environment of schools more accessible would have the potential to improve the current situation. An advantage of running such a program would be the possibility of imposing appropriate quality standards and monitoring their observance. In order to make education spaces accessible for students with sensory disabilities, appropriate assistive technologies and adapted teaching materials are needed. The social inspection campaign carried out by NAPSI in 2020 has shown that there are no textbooks adapted to the needs of students with sensory disabilities in mainstream middle schools. About half of the school representatives who were interviewed reported that they could order such textbooks if needed (for all subjects or only for some of them). However, those schools where there are students with visual or intellectual disabilities had no adapted textbooks (see Table 9). The necessary assistive software and technology to enable students with these disabilities to take national examinations is non-existent in mainstream schools, although a 2018 provision requires that all schools must provide these technologies for examinations.532 In their absence, a person reads the student the questions and enters the answers that the student dictates to them. Middle schools where enrolled children with visual/intellectual disabilities have TABLE 9 adapted textbooks, 2020 Yes, for all Yes, for part of Total No Total subjects the subjects N Percentage of schools where enrolled children 6 8 86 100 33 with visual disabilities have adapted textbooks Percentage of schools where enrolled children with intellectual disabilities have adapted 2 5 92 100 268 textbooks Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI inMarch-August2020onanationallyrepresentativesampleconsistingof540middleschools(weighteddata). Initial and continuous training of teachers In mainstream schools, the number of teachers trained to work with children with disabilities and/or SEN is extremely low. Schools usually declare their teachers as 532 Procedure no. 31852/31.05.2018 on ensuring equal conditions for students with visual disabilities/hearing disabilities/autism spectrum disorders who take the national examinations. 242 Education trained even if they have completed only one course in the field, which is not equivalent to a Bachelor’s and Master’s degree in the field of special pedagogy.533 Data from the NAPSI social inspection campaign show that 68 percent of the middle schools in the country lack trained teachers in the field of inclusive education or special pedagogies. Moreover, even in those schools that declared having teachers with such training, the number of those teachers is low. Only 10 percent of middle schools reported that more than a quarter of all of their teachers were trained in this field. The situation is worse in rural areas, where just over a quarter of schools have at least one teacher trained to work with students with disabilities and/or SEN compared with almost half of all schools in urban areas. Teachers with the training to teach children with special needs in rural and FIGURE 30 urban schools, 2020 Total Urban Rural Total N (unweighted) 528 301 227 (0) 68% 52% 73% (0-25) 23% 36% 18% (25-50) 5% 4% 5% (50-75) 3% 1% 4% (75-100) 0% 1% 0% 100% 1% 6% 0% Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI inMarch-August2020onanationallyrepresentativesampleconsistingof540middleschools(weighteddata). The initial training given to teachers in mainstream education during their Bachelor’s degree covers only superficial areas of special pedagogies.534 This initial training is segregated in that there are separate specializations in pedagogy and special pedagogy, with the latter being compulsory only for those aiming to teach in special education. This reflects the “traditional” situation in which students with special needs were educated exclusively within special education schools. At the moment the legal provisions with regard to teachers’ qualifications are not coherent. A pedagogy graduate is only considered qualified to teach in mainstream education, while teaching in special education requires special pedagogy studies. However, the pedagogy graduate may have to teach students with similar diagnoses as those enrolled in special education. The inclusion of children with special needs in mainstream education implies the obligation to prepare teachers to work effectively with them. This would be facilitated by the provision of a framework for the proper initial training of all new teachers that would include special pedagogy courses, while also finding a way to provide training in the field of special pedagogies to practicing teachers. Training courses are provided for teachers from the education system to learn how to work with students with disabilities and/or SEN, but their participation rates are low. There are only three counties in Romania where the teacher training center (TTC) did not include any course on these topics during the 2018-2019 school year.535 On average, three courses on special pedagogies/inclusive education were 533 This refers to the qualifications that the education system currently requires to work with students with SEN in special education (according to the Order no. 5574/2011 of the Ministry of Education, Research, Youth and Sports, Chap. III, Art. 8 – currently, the Ministry of Education). 534 The provisions of Order no. 4524/2020 on introducing and organizing Masters’ Programs in Teaching also mention inclusive education as a “recommended topic”. 535 Alba, Buzău, and Giurgiu counties. 243 Education available in each county (which constitutes 10 percent of the total number of courses offered by TTCs nationally).536 The annual number of participants in all TTC courses is quite low (only 36 percent of all teachers),537 and of these, only 12 percent participated in a course related to the education of children with disabilities and/or SEN in 2018- 2019 (which means 4 percent of all teachers in the country).538 Information from the qualitative research indicates a low level of interest in specialized training among teachers, and any interest is almost exclusively related to the inclusion of at least one child with disabilities and/or SEN in that teacher’s classes. In few cases, the teacher in question has taken a constructive and active approach and undergone the necessary training, but in many other cases, the teacher tries to manage the situation using the limited resources that already exist in the school. Teachers in mainstream education currently have no obligation to complete courses in the field of inclusive education for students with disabilities and/or SEN. If all teachers were required to complete the appropriate courses (which ideally would be increased in number and diversified in subject), this would reduce the existing training gap. However, this would not be sufficient in the long run without the inclusion of a wide range of special pedagogy courses in the initial training of teachers in both primary and secondary education and, thereafter, continuous and regular training to cover the wide and complex range of students with disabilities and/or SEN in the system. There are currently no systematic educational resources available to help teachers working with students with disabilities and/or SEN. What is needed is a national- level online platform that brings together and systematizes practical solutions and materials that teachers can use in the classroom when teaching students with different types and levels of disability. This has the potential to raise the quality of inclusive education. Financing the school inclusion of children with special educational needs The limited access to schooling and the poor quality of education received by many children with disabilities are also caused by the way in which financial resources are allocated within the education system. The low level of financing allocated to inclusive education was one of the issues highlighted by the NSPD 2016-2020 and has still not been resolved. An aspect that negatively affected the funding of the education system, including for students with disabilities, was the shift to per capita budgetary allocations on the basis of cost standards, which coincided with a decrease in the total amount of funding allocated to educational institutions. The qualitative research has shown that there are many cases in which schools struggle to stretch their limited existing funds just to cover their basic expenses (mainly the payment of salaries). In these cases, schools have no additional funds with which to change the existing institutional environment to the benefit of students with disabilities and/or SEN. Because of inadequate funding throughout the education sector, schools tend to use the funds allocated for SEN students to finance their budget shortfalls. The standard cost factors, which are used to calculate the basic funding of education units, include disability as part of their criteria. The allocations for SEN students who 536 For a detailed presentation of the situation in each county, see Annex-Table 45. 537 Estimation for the 2018-2019 school year (World Bank calculations using administrative data reported by TTCs and NIS data). 538 Out of a total of 73,642 participants in TTC courses in the 2018-2019 school year, only 8,906 teachers were trained in the field of inclusive education. 244 Education are integrated into mainstream education in primary and lower secondary schools are approximately 1.7 times higher than for typical students and over four times higher in upper secondary education.539 The principle of allocating more financial resources for SEN students is in line with other legal provisions designed to support their school inclusion. For example, a SEN student is considered as the equivalent of three typical students, so, in theory, the legal minimum class size must by law be decreased by two to enable teachers to allocate more time to managing the special educational requirements of the SEN student.540 However, this legal provision is not in effect at present because many classes are above the legal limits in order for the school to be able to operate on their existing funding.541 Therefore, in the absence of adequate funding for the education system, schools use the additional financial resources that should be used to improve the education offered to SEN students to reduce their existing funding gap. Providing support staff The number of SEN students allocated by law to one support teacher is too large to ensure they receive a quality education. The main human resource that is provided for SEN students in mainstream schools are support teachers. These personnel are employed, in accordance with the law,542 by special education units in each county and are then assigned to specific mainstream schools. The law stipulates that at least half of the time of a support teacher should be spent in the classroom, supporting the activity of teachers, while they may spend the rest of their time working in other spaces and on individual activities with the SEN children. The law also makes support teachers responsible not only for students with a SEN certificate but also for all children in the school who are at risk of failing or of dropping out. However, the allocation of support teachers is made by law only according to the number of SEN students in the school (one teacher with 16 teaching hours per week for every 8 to 12 students with mild or moderate deficiencies or 4 to 6 students with severe deficiencies), which means that it is impossible for these teachers to properly support the education of these students.543 The qualitative research has shown that, in practice, support teachers work almost exclusively one-on-one with their students. Given that there are only a very small number of support teachers, the system often allocates one teacher to 16 SEN students (which translates into only a single hour every week for each student). This practice often means that the time that students spend in the classroom is wasted in the absence of an approach adapted to the needs of children who can only learn with the help of a dedicated support person, while the time that they spend in the support teacher’s office is insufficient for them to make any substantial progress. The current number of support teachers in Romania is substantially lower than the number required to comply with the law. Administrative data from County School Inspectorates (CSIs) and CCREAs (see Figure 31) shows that on average there is only one support teacher for every 47 children with disabilities and/or SEN in mainstream 539 GD no. 107/2020. 540 Order no. 5574/2011, Chap. IV, Art. 21; Order no. 5573/2011, Chap. VII, Art. 53 para. (2). 541 The current regulations set a minimum and maximum number of students in a class/group for each educational level. 542 The main normative act that regulates the activity of support teachers is Order no. 5574/2011, according to which, itinerant/ support teachers are “teachers with higher education in the psycho-pedagogical field who carry out learning, stimulation, compensatory strategies for pupils with learning disabilities, and recovery activities with SEN persons integrated into mainstream education units, in collaboration with all stakeholders.” 543 If a support teacher were to be assigned a minimum of four SEN students, he or she could accompany each student in the classroom for four hours each week but would not be able to perform any other activities with the student. In the case of students with severe disabilities, the permanent presence of the support teacher may be needed for a proper educational process. 245 Education education nationwide. Differences between counties are large, since the number of SEN students per support teacher varies between below 20 and more than 100. There are also within-county differences as, in rural places, access to the services of a support teacher for SEN students is almost non-existent. The qualitative research carried out for this report confirmed that these teachers tend to be concentrated in urban areas. However, even in urban areas, not all mainstream schools have a support teacher, even when they have SEN students enrolled. Thus, in practice, there are SEN students who do not receive any support at all from a dedicated teacher, while others receive as little as one hour of support per week or less. Number of support teachers and number of SEN students per support teacher FIGURE 31 in selected counties, school year 2018-2019 No. of SEN students/support teacher No. of support teachers Suceava 379 8 Buzău 209 17 Călărași 184 2 Galați 173 9 Bacău 150 16 Vaslui 128 13 Mureș 119 16 Vrancea 103 12 Constanța 82 29 Iași 75 29 Alba 71 17 Bistrița-Năsăud 69 22 Arad 67 16 Hunedoara 61 26 Timiș 60 56 Dâmbovița 58 29 Satu Mare 57 18 Covasna 50 13 Harghita 46 30 Sălaj 44 15 Prahova 43 39 Ilfov 43 14 Bihor 38 62 Teleorman 38 19 Bucharest 37 124 Cluj 36 82 Neamț 36 35 Olt 33 24 Maramureș 32 44 Gorj 31 37 Botoșani 30 54 Brăila 28 42 Caraș-Severin 22 61 Sibiu 22 61 Argeș 18 71 Ialomița 15 23 Tulcea 15 40 Giurgiu 15 12 Mehedinți 14 67 Source: World Bank based on reports made by County School Inspectorates (CSIs) (number of support teachers and number of SEN students) and by CCREAs (the number of SEN students) for all counties except246 Brașov, Dolj, and Vâlcea. Education The role of school facilitators is to provide dedicated support to individual SEN students to enable them to attend classes, but it is challenging for the system to provide this service. Order no. 1985/1305/5805/2016 associates the role of the facilitator with the term “shadow” that is used in the specialized literature. This means the role of the facilitator is to work individually with a SEN child while he or she is at school in collaboration with the other teachers in the school. The use of a school facilitator does not exclude the intervention of the support teacher. In some cases, the facilitator might even be under the supervision of the support teacher. However, not all students who need a school facilitator are provided with one. From the data reported by CSIs for the 2018-2019 school year, approximately 7 percent of SEN students nationwide have a facilitator with them in class (see Figure 32), with this share being even lower in rural areas (6 percent). The share decreases as the education level increases with 14 percent of SEN children in preschool having a facilitator, 9 percent of those in primary school, 6 percent of those in middle school, and only 4 percent of those in high school. Use of school facilitators at the national level, school year 2018-2019 FIGURE 32 Percentage of children with SEN who have a facilitator: Number of school facilitators: Total 7 % 3,833 Environment: Urban 8% 2,640 Rural 6% 1,193 Education cycle: Preschool education 14% 551 Primary education 9% 1,658 Middle education 6% 1,291 High school 4% 333 Source: Calculations made by the World Bank based on reports made by CSIs (number of school facilitators and number of SEN students) and CCREA (number of SEN students). Note: There were no reported data for the counties of Brașov, Călărași, Dolj, Galați, Ialomița, Iași, Timiș, and Vâlcea so estimations based on data from the other counties have been used. Even though school facilitators are necessary to ensure the inclusion of some students, they are not funded by the education system. Instead, in situations where facilitators accompany students to class, they are usually the personal assistants of children with a severe level of disability (often a family member) or, in few cases, they are specifically employed to fulfill this role by students’ families.544 Not all students who need a facilitator have the severe degree of disability necessary to be granted a personal assistant as a disability benefit. In addition, even when the students do have the necessary level of disability, this only gives their families the right to hire an assistant, but they are not obliged to do so. Furthermore, these facilitators are required by law only to provide basic assistance and are not required to have any pedagogical training. The only way in which school facilitators could improve the quality of teaching would be if the education system was committed to providing them for all students who need them and if they were required to meet professional 544 At the moment, the occupation of school facilitator is not regulated in the Classification of Occupations in Romania (COR). 247 Education standards. For a best practice model for using professional facilitators to ensure the school inclusion of students with disabilities, see Box 39. Recruitment and management of school facilitators for students with BOX 39 disabilities in France Starting with 2019, the Government of France began a comprehensive reform of the education system with the objective of better ensuring the inclusion of children with disabilities in mainstream schools. Two of the seven axes of this reform aim to significantly increase the contribution of school facilitators to the education of students with disabilities by: (i) offering assistance to each student with disabilities closer to his or her needs; (ii) ensuring that the system responds more quickly in allocating facilitators to students; and (iii) improving their professional qualifications and working conditions. The French national education system already provided school facilitators for students with disabilities in mainstream schools. The major change brought by the reform was the transition from employing a separate facilitator for each student to the creation of school structures (inclusive local support centers) that include all of the facilitators from a school with the aim of improving their recruitment and allocation. This has meant that factors such as the students’ timetable and the facilitators’ need for employment (facilitators can now work with several children, thus enabling them to work as many hours and days as they wish) can be better taken into account. This has increased the availability of facilitators, and newly enrolled students with disabilities now benefit from assistance much faster. And because the facilitators are employed by the school, the facilitators can be used not only to provide personal assistance but also to support groups of students. The reform will also make it possible for facilitators to help students outside of school hours, with that part of their activity being financed by the child’s social assistance benefits. The reform created a dedicated service in each Directorate of Departmental Services of National Education to coordinate and organize the work of school facilitators in each department in France. The law also allows more experienced school facilitators to become advisers to support the professional development of their colleagues. Source: French Government, State Secretariat for Persons with Disabilities (2019 a and b). Mainstream education does not currently provide enough resources and adaptations to ensure an inclusive education for students with disabilities and/ or SEN as specified by the Convention.545 It is often the case that, when SEN children are enrolled in mainstream schools, they are not provided with the assistance and adaptations that they need to be able to participate fully and learn. Available resources are often formal, provided only in documents, and are not implemented, so they do not provide any real support in the learning process. As a result, there are situations in which parents are still having to choose special education for their children in order to ensure that they receive a better education. There is a general move towards reserving special education only for students with severe disabilities, but mainstream schools are often inappropriate even for students with moderate and mild disabilities. For example, the qualitative research identified a case in which, under parental pressure, a special school re-established classes for students with moderate and mild disabilities. In the absence of the necessary conditions in mainstream schools to ensure the inclusion of students with disabilities and/or SEN, which would allow the use of general methodologies in the school orientation process, the evaluation of each particular child is very important. The principle currently used in school orientation is that children cannot be assigned by school authorities to special schools without the consent of their parents, as parents and legal representatives of children have the right to choose the type of institution in which their children’s schooling will take 545 CRPD Committee (2016a, para. (11)). 248 Education place. If the Ministry of Education were to develop standards for the education of students with disabilities and/or SEN, these could be used to evaluate the quality of the services offered by each educational institution. This would help to ensure that the best interests of the child are the main concern of all involved and to avoid situations in which decisions about mainstream versus special education are made without considering the real benefits offered to each student. Moreover, monitoring these standards can yield information that can guide the reform process going forward. Staff who specialize in working with children with disabilities are concentrated in the special education system, but students enrolled in mainstream education would also need to benefit from their services (such as therapies). Although an order was passed in 2011 granting access of all children with SEN to specialists working in special education,546 there is no implementation framework for this. Meanwhile, few early intervention services and necessary therapies for students with disabilities exist in many localities, even if the student’s family is willing to hire specialists from the private sector. Thus, it is essential that these staff and services that are available in special schools become accessible to a larger group of potential beneficiaries, which could be done by finalizing the legal and institutional framework needed to allow the resources of the special education system to be used outside the system. Students in the mainstream education system could then benefit from the services of local professionals, regardless of whether they work in a mainstream or special school. Inclusion of children in preschool education The low participation rate of children with disabilities in early education is also caused by the fact that the parents of these children face barriers in trying to enroll their children in state kindergartens. Early education is very important for children with disabilities as early diagnosis and interventions can significantly improve their further development. The qualitative research showed that there are situations when the enrollment of a child with SEN in kindergarten is postponed by the manager of the institution, in the hope that the parents will try another kindergarten. In other situations, the child is initially accepted, but afterwards the teacher and/or the manager of the kindergarten puts pressure on the parents to withdraw or transfer the child. Their motivation can be to avoid dealing with the difficulties involved in including a child with disabilities and/or SEN or the real or expected negative reactions of other parents. While mainstream schools at the primary and middle levels have a legal obligation to enroll all students from their catchment areas, this legal obligation does not exist in the case of preschool education. Adequate monitoring of the progress of SEN students The administrative data produced by the education system on students with SEN are of poor quality, partly because of differences in how national regulations are implemented across the country. Reporting on the same indicator often differs between institutions in the same county (for example, between the County School Inspectorate and the CCREA). Although one cause of these divergences may be reporting errors, they are often also the result of different and/or faulty data collection processes. The large differences between counties in terms of the share of 546 According to Order no. 5573/2011, Chap. III, Art. 19: “During school enrollment, children with SEN have access to all educational and psycho-intellectual, medical, and social rehabilitation resources, to other specific intervention services needed and that are available in the community or in specialized units, including in special and integrated special education units.” Also, Chap. VII, Art. 54 para. (4). 249 Education SEN students in the total school-age population or in the ratio between the number of SEN students and the number of children with disability certificates are a further indication of the inconsistent methodologies used to collect data and also to grant these certificates. The share of students with a certificate of disability in the total number of SEN students in a county varies enormously at the national level between 12 percent and 94 percent (with an average of 51 percent for the 32 counties for which data were available). Although the relevant legislation is issued at the national level, the available data indicate that there is no uniform practice among counties, either in certifying SEN or in the measures that they take for these children. Some counties appear to make minimal efforts in certifying SEN and making school adaptations, while in other counties, they may evaluate SEN differently and grant many SEN certificates, especially for deficiencies which do not require a disability certificate. There is no regulation that requires the monitoring of the academic progress of SEN students to ensure that the necessary steps are being taken to ensure their inclusion. According to the qualitative research carried out for the preparation of this report, in many situations, teachers only formally fulfill their obligation to compile a Personalized Intervention Program for these children and simply replicate the same content for whole series of children, as a result of which the intervention in the classroom is minimal or non-existent. The written documents related to the school inclusion of students with SEN are very general and do not reflect real practices in the classroom, which makes it difficult for the school principals or school inspectorates to require their teachers to discharge their full obligations to these students. However, it is difficult for teachers themselves to provide an inclusive education in the absence of adequate qualifications and the appropriate conditions for teaching SEN students (such as small class sizes and the presence of support staff). In these circumstances, they cannot fulfill their obligations related to the inclusion of SEN students and the assessment regarding the fulfilment of their obligations is made through an evaluation of written documents. Diminishing cultural barriers The qualitative research indicates the persistence of a negative general perception of persons with disabilities, which hinders the provision of an inclusive education to children with disabilities. Often the attempt to include a student with disabilities in the class/group of a mainstream school is blocked by the parents of other children, who form a coalition to exclude him or her from the school unit (see Box 40). Most of the time, they perceive the child with disabilities as a threat to their own children’s school performance. Many professionals in the education system have highlighted the negative effects on child development of parents’ competitive attitudes that are focused on their children’s cognitive achievements. Carrying out a campaign in public schools to disseminate scientific evidence about the positive effects of cooperation and the development of social skills could be useful in this context. 250 Education BOX 40 Interviews with parents of children with disabilities “I had a very bad relationship with the other parents at the mainstream kindergarten. One of them even told me to take my children and confine them. As if they were animals.” (Parent of pre-school age children, with mental disabilities) “We had to choose between three kindergartens. At one of them, we were refused because our boy was not yet able to walk. The other parents were not happy with the possibility that their children would imitate our boy and stop walking. After their complaints, the director told us [that our son] could only come for one to two hours [a day], during which we shouldn’t let him leave his chair.” (Parent of a child with disabilities) Source: World Bank qualitative research (February-May 2020). Recommended measures The following measures are recommended: 1 The Ministry of Education to create and implement a national grant program to ensure the necessary resources for the transition from traditional to inclusive schooling. 2 The Romanian Agency for Quality Assurance in Pre-University Education (RAQAPE) to include an external quality evaluation criterion for educational facilities regarding mandatory modules on inclusive education as part of initial and continuous teacher training. 3 The Ministry of Education to require that all teachers periodically attend training to update their inclusive teaching skills and knowledge of special pedagogies. 4 The Ministry of Education to develop a national online platform to provide resources for teachers to use in providing inclusive education to children with disabilities and/or SEN. 5 The Ministry of Education to amend the legislation on reducing the number of students in classes with SEN students.547 6 The Ministry of Education to ensure the availability of the resources and institutional framework needed for inclusive education by: (i) regulating the necessary framework for the transition from traditional to inclusive education by redesigning institutional development plans in each school by clearly defining the responsibilities of the actors and the schools, including at the management and institutional development levels;548 (ii) developing the network of support teachers proportional to the number of SEN students enrolled and creating the required number of positions; (iii) regulating the occupational status, training, responsibilities, rights and obligations, financing, quality and cost standards, monitoring, and control of school facilitators; and (iv) funding and building a network of school facilitators.549 547 At present, the measure is part of a law, but in the larger context of the national education system, it is not applied. 548 By including specific measures in the Institutional Development Plans of the schools, in which the transition to inclusive school should be reflected. 549 For those students entitled to a personal assistant as part of their disability rights, the personal assistant could be used as a facilitator for the student provided that the conditions for doing so are clearly regulated (such as they are given proper training). 251 Education 7 The Ministry of Education to improve the system that identifies educational needs of students and puts together their Personalized Service Plan and Personalized Intervention Program550 and to develop a mechanism by which the County School Inspectorates (CSIs) would monitor the implementation of the Personalized Service Plan and Personalized Intervention Program. 8 The Ministry of Education to create the legal and institutional framework for offering, upon specialized recommendation, the services of special education therapists from special and special integrated education to students with disabilities in pre-university education. 9 The Ministry of Education to make it obligatory for mainstream pre-schools to enroll children with disabilities and/or SEN. 551 10 The RAQAPE to develop standards for providing quality education to students with disabilities and/or SEN,552 against which the quality of services offered by each school can be evaluated. 11 The Ministry of Education to regulate the obligation for schools to include topics related to disability and equal opportunities for students with disabilities and/or SEN in homeroom classes. 12 The Ministry of Education to carry out campaigns in public schools, aimed particularly at the parents of typical children, to raise awareness of the benefits of providing inclusive education to all students.553 13 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) in partnership with the Ministry of Education to perform an annual analysis of the way in which equal opportunities are offered to persons with disabilities/SEN when taking the national evaluation and baccalaureate exams. 550 It is important that these documents focus on the needs of the students and not on what resources are available in the system. 551 The Ministry of Education may choose to adopt a system similar to that used for pre-university primary and middle education, in which schools are required to enroll all students in the catchment area. 552 These standards should prioritize resource indicators (such as the presence of certain personnel and the ratio between the existing staff and the number of enrolled SEN students). 553 Emphasizing on the benefits of cooperation and development of personal relationships, for the future adult life, bigger than those associated with developing cognitive competences. 252 Education 6.2 6.2 Limited access Limited to tertiary access education to tertiary IN SH education ORT What are the rights of persons with disabilities? Students with disabilities should receive support in school so that they can learn and reach their full potential. All persons with disabilities should be able to attend university if they have the necessary qualifications. What is the situation in Romania? Few persons with disabilities attend the courses given by RO 7 % Romanian universities. Only 7 percent of Romanian university students report having a disability, a chronic EU 20% condition or other functional limitations, whereas in some European countries, the proportion is over 20 percent. Many persons with disabilities lack the necessary qualifications to attend university courses. Few students with disabilities participate in or pass the baccalaureate exam. universities without special policies for Fewer than half of Romania’s universities have special 50% students with policies for students with disabilities. disabilities 5/6 without universities reserved places In five out of six universities, there are no specially allocated places for students with disabilities. 2/3 universities without specially allocated In two out of three universities, there are no specially allocated places in the dorms. Only 3 percent of the places in dorms universities’ accommodation capacity is adapted to the needs of students with disabilities. 253 Education Most of the university buildings are not properly adapted. 75% 82% 92% 86% 80% of study buildings of libraries are of classrooms/ of laboratories of study buildings either do not not adapted. seminar rooms are not adapted. do not have have an and adapted appropriate amphitheaters bathrooms. access ramp or are not adapted. do not have one at all. What are the causes of this problem? Every university program has to be accredited, but the accreditation process takes very little account of the conditions that universities can offer to students with disabilities. 1.3% Material resources are necessary to ensure that universities can adapt their facilities to accommodate students with disabilities. Only 1.3 percent of the funding from the government granted to universities takes into account the number of disadvantaged students, which includes those with disabilities. What are the key changes that need to be made? University curricula must be approved only if they include adaptations to the needs of students with disabilities. It is necessary that the provision of funding to universities takes into account the number of students with disabilities that are enrolled, which would enable universi- ties to invest in making the necessary adaptations to accommodate their needs. Data must be regularly gathered on all Romanian universities to monitor the con- ditions offered to students with disabilities. 254 Education 6.2 Limited access to tertiary education Universities must be prepared to include students with disabilities and ensure that they can enjoy the same opportunities as their counterparts without disabilities. Tertiary education institutions must provide students with disabilities with access to physical, informational, and communications environment including reasonable adaptations of teaching and assessment methods. Without adequate access and necessary adaptations, the overall objective of formal education may remain unaccomplished because of its failure to ensure an independent and fulfilled adult life for persons with disabilities. Higher education graduates with disabilities can become role models for other persons with disabilities. They will also have the necessary qualifications to be employed in the formal education system, thus meeting one of the requirements of the Convention. Description of the problem Access of persons with disabilities to tertiary education in Romania is currently very limited. According to the Eurostudent VI research,554 in 2017 only 7 percent of university students in Romania reported having a disability, a chronic condition, or other functional limitations. This proportion was the lowest reported by any country in the study and was much lower than countries such as the Netherlands (36 percent), Finland (28 percent), and Sweden (27 percent) (see Figure 33). The proportion of students with disabilities in higher education is even lower. Among those who identified themselves as persons with disabilities, 43 percent reported that their disability did not limit them at all in their learning activities. Also, more than half of the students with limitations related to their studies (56 percent) reported that they did not need or did not want any support from the authorities to be able to complete their university studies. 554 German Centre for Higher Education Research and Science Studies (2018). Of all of the EU member states, only Belgium, Bulgaria, Cyprus, Greece, Luxembourg, and Spain were not included in the research. 255 Education FIGURE 33 Share of students who report having a disability, a chronic condition, or other functional limitations, 2017 The share of students who declare that Share of people who declare a chronic they have a disability, a chronic condi- condition or a difficulty in performing a tion or other functional limitations (2017) basic activity, in the age group 15-24 (2011) Netherlands 36.1% 5.3% Finland 27.9% 6.5% Sweden 27.1% 8.2% Lithuania 23.9% 2.7% Portugal 23.8% 4.2% Germany 23.1% 2.1% Denmark 21% 4.9% Slovenia 20.8% 1.4% Poland 20.3% 2.9% Ireland 19.7% 1.3% Croatia* 15.9% Estonia 15.6% 4.9% Hungary 15.5% 1.7% Czech Republic 14.9% 1.2% Latvia 14.7% 3.4% Austria 14.5% 4.3% Italy 14.1% 1.5% Malta* 13.5% Slovakia 12.5% 1.7% France 9.6% 5.8% Romania 6.7% 1.5% Source: Eurostudent (data from 2017). Eurostat (data from 2011). Note: * Eurostat data unavailable. For better comparability, the figure also shows the share of persons who report a chronic condition or difficulty in performing a basic activity in the age group 15-24 years. The few students with disabilities who study in the tertiary education system often have to make considerable efforts to participate in their classes and need to be strongly motivated to complete their studies and graduate. Families are often involved in supporting these students throughout their studies, and it is very difficult and even unlikely that these students could continue without their support. For example, in the absence of appropriate accessibility (such as study spaces and auxiliary spaces such as accommodation), students with disabilities may need to be 256 Education accompanied by an able-bodied person in order to attend any of their classes. They may also not be able to access all of the courses. Difficulties in accessing tertiary education BOX 41 “I have graduated high school in my home town, and after passing the baccalaureate exam, I had to choose what to do with my life: to claim a disability pension and, from being a young hope, end up being socially assisted, someone surviving on disability benefits or to choose to go to university. I chose to go to Iași, as this was the closest to my home. I applied, and I was surprised to get a tuition-free place. When I applied for a dorm room closer to the university, I was refused on the basis that the room I wanted belonged to another university, and I had to make all sort of petitions and to ask for audiences. The room offered to me by my own university was in a different neighborhood of the city and was not at all close to the tram or taxi station. It would have taken me 40 minutes to get to the university, by bus so [instead] I decided to commute daily from my town, which I did together with my mother, for four years, keeping her with me because I needed her support. And it hasn’t been easy, we used a minibus as I didn’t have a car at the time, I couldn’t afford one. When I applied for that dorm room, among other things, they suggested that I choose another faculty, for distance learning, as the one I had applied for was a hard one and they hadn’t had a similar case before, so they didn’t know how to behave, and how to help me. In reaction, I told myself that if I don’t do this myself, they will not be able to help me so I didn’t quit. Afterwards they supported me, I didn’t face any obstacles, I took all exams, I was able to set up a timetable according to my needs, I mean they were not reluctant about the idea of having a student with disabilities. Anyway, for them it’s been something unexpected that they hadn’t experienced before, and I realized I had to remain there because this way I could show that it is possible, and maybe others with a similar problem could come and have the opportunity to study there.” (Young person with disabilities, Iași county) Source: World Bank Qualitative research (February-May 2020). Explanation of the problem The NSPD 2016-2020 did not include any measures specific to tertiary education. The strategy only mentions the existence of a very small number of higher education students with disabilities, without making any estimate of exactly how many there are. Also, the instrument for monitoring the implementation of the strategy did not include any line dedicated to tertiary education. One of the barriers preventing persons with disabilities from accessing tertiary education is related to the insufficient learning during their pre-university education. Generally, students with disabilities in pre-university education are included by obtaining a SEN certificate. Teachers of SEN students have an obligation to move them up within the education system regardless of their performance as it is illegal to let a SEN student fail an exam or repeat a school grade. While this approach is positive in that it is designed to accommodate the requirements for students with SEN, in practice it means that in many cases teachers make little effort to ensure that SEN students are learning. As a result, many students pass from one grade to the next during their pre-university education without being properly equipped to pass a national exam such as the baccalaureate. The tertiary education system is regulated in two ways, first, through evaluations carried out by the Romanian Agency for Quality Assurance in Higher Education (RAQAHE) and, second, by basing the allocation of funding on criteria established by the National Council for Financing Higher Education (NCFHE). The RAQAHE conducts external evaluations of the quality of education provided by higher education institutions, on the basis of which they authorize and accredit university education programs. The NCFHE sets the criteria governing the allocation of annual funding to each university by the Ministry of Education. The NCFHE reviews its criteria annually, 257 Education and these are approved by ministerial order for each academic year. Beyond these regulations, the Romanian tertiary education system is organized on the principle of autonomy, according to which each higher education institution manages its own affairs. The evaluations of RAQAHE treat the issue of students with disabilities as marginal and consider accessibility standards as desirable rather than mandatory. The RAQAHE uses an evaluation methodology (approved by GD no. 915/2017) that contains two types of standards according to which the evaluation is made - minimum and reference. The former refers to the minimum levels to be reached, while the latter are optimal levels, which are recommended but not mandatory.555 The only minimum standard related to students with disabilities is vaguely formulated as “meeting the requirements of students with disabilities in learning and teaching activities and providing appropriate support services.” Even this minimum standard is inadequately assessed, with the RAQAHE only verifying the existence of some provisions related to these requirements in the planning and allocation of resources. All of the other standards related to students with disabilities are part of the reference category, including accessible spaces for support and extracurricular activities (such as residential facilities and cafeterias), the availability of admission procedures adapted to students with disabilities, adapted teaching and assessment methods, and the availability of appropriate learning resources (such as textbooks, treatises, and anthologies) available in libraries. The existing regulation governing the funding of tertiary education uses no criteria for the number or share of students with disabilities in defining basic funding. Financial allocations have three components: (i) basic funding; (ii) additional funding; and (iii) funds allocated on a project basis for institutional development. In determining the amount of basic funding to be allocated, equivalence coefficients (set according to the language(s) used in teaching, the frequency of the classes, and the locations where the studies are organized) and cost coefficients (based on the science branch which the study program belongs to) are used. The educational system considers the provision of support to students with disabilities in tertiary education as desirable but not mandatory. The only way in which students with disabilities are considered when financial resources are allocated to a university is through additional funding methodology, which is provided to those universities that have been successful based on a set of criteria. The amounts granted through additional funding represent only 26 percent of the total allocations, and students with disabilities are mentioned only in one criterion along with other students from socio-economically disadvantaged backgrounds (those who live in rural areas or in cities with fewer than 10 thousand inhabitants, those who come from placement centers in the child protection system, or belong to disadvantaged ethnic groups). The share in each university of students from these various kinds of disadvantaged backgrounds is then calculated, and, based on this indicator, a university can be allocated up to 5 percent of the additional funding (in other words, a maximum of 1.3 percent of the total funding). Another possibility for financing access facilities for students with disabilities is through the institutional development funds managed by the NCFHE, which are awarded on a project basis. One of the areas eligible for projects is social inclusion. 555 The standards are set for the three domains that are being evaluated: (i) institutional capacity; (ii) institutional effectiveness; and (iii) quality management. 258 Education The lack of any real concern on the part of higher education institutions about being accessible to students with disabilities is evident in their poor compliance even with the minimum criteria imposed by existing regulations. A questionnaire- based survey conducted for this report on a sample of public and private universities showed that: 1. There are no policies related to students with disabilities.556 Fewer than half of the responding universities reported that their policy documents contain any provisions for adapting teaching and examination methods to the needs of students with disabilities. Similarly, fewer than half of the universities have an internal structure that deals with the formulation and integration of recommendations on the accessibility of the environment and educational content for students with disabilities. However, even in those tertiary institutions where these policies exist or where there is a specialized structure (which may have other responsibilities as well), this does not automatically translate into better conditions for students with disabilities, as shown by the data as follows. 2. There are no specially allocated places for students with disabilities. Only about one in six responding universities reported having a quota for students with disabilities. 3. There are no dorms capable of providing accommodation to students with disabilities (see Annex Table 47). One in three universities reported having an accommodation quota for these students, but a very small part of the stock of accommodation offered by universities is accessible for the needs of students with disabilities (about 3 percent). Most of this limited accessible accommodation meets the needs of students with locomotor disabilities, but no places are designed to meet the needs of students with visual disabilities. 4. Few of the universities’ websites are accessible to persons with visual disabilities. Only one in five universities claims that their website is accessible to persons with disabilities. The situation is better for the e-learning platforms, with one in three universities claiming that their e-learning platforms are accessible to persons with visual disabilities (see Annex-Table 48). 5. The entrances to the study buildings are not accessible. Of the total number of buildings for which data were provided, the actual entrance is accessible in only two-thirds, and only 25 percent of the buildings have an adequate access ramp.557 In another 36 percent of the buildings, a ramp exists but is not built in a way that meets the needs of students with disabilities. 6. The physical environment of the study spaces is not accessible. Only 38 percent of the buildings of the responding universities have an elevator to enable a person in a wheelchair to access the upper floors or do not need one (having only one floor). Only 8 percent of classrooms/seminar rooms and amphitheaters and 14 percent of university laboratories are physically adapted to the needs of students with disabilities. Also, fewer than one-fifth (18 percent) of the libraries in the study buildings are accessible (see Figure 34). 556 For a detailed presentation of the data see Annex-Table 46. 557 See Annex-Table 49. 259 Education FIGURE 34 Physically adapted spaces in university study buildings, 2020 Physically adapted classrooms/seminar rooms, 8% amphitheaters Physically adapted laboratories 14% Libraries in physically adapted study buildings 18% Cafeterias/cafes in physically adapted study buildings 16% Source: Calculations made by the World Bank using data from a survey of an opportunity sample of public and private universities. 7. Toilets in university buildings are not accessible to students with disabilities. Approximately 22 percent of study buildings have at least one accessible bathroom. For another fifth of the buildings, universities claim the existence of an accessible bathroom, but it does not meet the appropriate standards to be considered as such. There is currently no national system for monitoring the conditions that universities offer to a student with disabilities. The only publicly available information identified comes from a study that was conducted in 2018 by a student organization,558 but the methodology is not rigorous. However, the results of such monitoring should be included on university websites with the information broken down for each university faculty, for each building, and for each type of disability addressed by the accessibility measures (locomotor, visual, or auditory). The monitoring process should be done annually. Recommended measures The following measures are recommended: 1 The Romanian Agency for Quality Assurance in Higher Education (RAQAHE) to revise the assessment methodology for ensuring that a university’s environment is adapted to the needs of students with disabilities and to require universities to conform with accessibility criteria as a minimum standard for obtaining higher education accreditation. 2 The National Council for Financing Higher Education (NCFHE) to revise the methodology for granting higher education funding to include specific criteria for students with disabilities in the basic funding methodology using equivalence coefficients. 3 The RAQAHE in partnership with the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to develop a system to transparently monitor the accessibility of the services offered by universities. 558 ANOSR (2020). 260 Health 7.Health 7. Mădălina Mădălina enjoys reading, painting and outdoor walks with her dog, Bella. She suffers from phenylketonuria, a rare disease for which newborn screenings weren’t performed when she was born, in the 1980s. Mădălina and her older brother weren’t diagnosed in time and as a result, did not receive the necessary treatment and developed several diseases. Mădălina hopes that the Romanian National Neonatal Screening Program for phenylketonuria will reach full coverage, so that there will be no more undiagnosed newborns. The treatment consists in eliminating certain foods from their diets and lifelong careful monitoring of the ingredients of each meal. For this to become a habit for both parents and children, and to thus cancel out the negative effects of the disease, it takes patience and a lot of practice. Mădălina has fought to overcome the limitations set by doctors in her childhood, she has specialized in social work and continues to learn in order to provide advice and moral support to those with similar problems. Sănătate 7 Health IN SHORT What are the rights of persons with disabilities? Persons with disabilities have the right to general and essential healthcare services available to the entire population, such as immunization, primary and specialized medical care, screening for communicable or non-communicable illnesses, dental care, and sexual and reproductive health. Persons with disabilities have the right to specialized services, such as the early detection of their disability (through pre- and post-natal screening), special medical devices, and habilitation/rehabilitation services (which enable persons with disabilities to live life as independently as possible, to reach their maximum physical, mental, and social potential, and to participate in all aspects of social life). Medical staff should not discriminate against persons with disabilities and should respect all of their rights. What are the main problems related to health in Romania? The analysis of the situation in Romania has revealed three main problems: 1 Limited access to treatment and public health services Some persons with disabilities encounter obstacles to accessing healthcare services in order to prevent, diagnose, and treat medical conditions. 2 Limited exercise of the right to sexual and reproductive health The right of persons with disabilities to sexual and reproductive health is sometimes unknown, by both persons with disabilities and people close to them. 3 Limited access to treatment with dignity and respect Some persons with disabilities are not treated with dignity and respect when they use healthcare services. 262 Health 7 Health Persons with disabilities, like persons without disabilities, have the right to well- being, an active life, and the opportunity to take part in the social life. Persons with disabilities also have the right to receive quality healthcare services, which are physically, informationally, geographically, and financially accessible. Persons with disabilities have the same needs as the general population when it comes to general and essential services such as immunization, primary and specialized medical care, screening for communicable or non-communicable illnesses, dental care, and sexual and reproductive healthcare. However, their quality of life also depends on having access to specialized services for the early detection of their disability (such as prenatal and postnatal screening), medical devices,559 and habilitation and rehabilitation services. Access of persons with disabilities to healthcare may depend not only on the availability of services but also on the behavior and practices of their healthcare professionals.560 The problems that will be addressed in this section are: 1. The limited access of persons with disabilities to treatment and public health services. 2. The limited exercise of the right of persons with disabilities to sexual and reproductive health. 3. The limited access of persons with disabilities to treatment with dignity and respect. 559 The problem of access to medical devices is tackled in Chapter 4 on Social Protection. 560 The health-related vision and key aspects to be addressed relate to Articles 16, 23, 25, and 26 of the CRPD. 263 Health 7.1 7.1 Limited access Limited to treatment access and to treatment public and publicShealth IN HORT health services services What are the rights of persons with disabilities? Persons with disabilities should be able to access primary medical care (from general practitioners), emergency care, specialized medical care (from doctors who specialize in specific groups of illnesses), and public health initiatives (such as immunizations). Measures need to be taken to prevent the medical conditions that lead to disability and to detect and treat them as early as possible. Persons with disabilities must be provided with the habilitation and rehabilitation services that are essential to ensure that they reach their maximum potential. What is the situation in Romania? The percentage of persons with unmet medical needs of the total of persons who had such needs in the last 12 months, 2018: More persons with disabilities than 2% persons without disabilities declare that they had unmet medical needs in 18% the last 12 months (regarding types of 42% services other than dental). Without With some With severe disabilities disabilities disabilities In Romania, the percentage of persons with severe disabilities who have had unmet medical needs is much higher than in all other European Union countries. What are the causes of this problem? Basic medical care is not 100 percent free for persons with disabilities. Certain medical specialties are dominated by private medical care providers, which have no contracts with the government, meaning that patients must pay out of pocket for their services. In certain areas, especially rural and poor areas, there are no general practitioners (GPs), specialized doctors, or habilitation and rehabilitation services. 264 Not all health facilities are accessible for persons with disabilities. At the end of June 2020, the physical and informational accessibility of only 228 out of 731 hospitals had been evaluated by the National Authority of Quality Management in Health (NAQMH) as part of their accreditation process. Only some of these hospitals had been deemed accessible. For example, only 50 percent had accessible bathroom facilities, and only 40 percent had accessible door opening systems. No assessment of outpatient facilities including GP practices has yet been performed. screening for 55% hearing problems x20 x3 for phenylketonuria 84% and hypothyroidism European Union Romania In other EU countries, it is a regular practice to carry out postnatal screening for up to 20 or more conditions that can lead to disability, but in Romania, the health system only screens for three. Even for these three conditions, the screening does not cover all newborns because it is performed only in hospitals that have the necessary equipment and trained staff. In 2019, only 55 percent of newborns were screened for hearing problems and 84 percent for the early identification of phenylketonuria and congenital hypothyroidism. smoking unhealthy obesity alcohol eating consumption There is only one disability prevention program in Romania, dedicated to smoking, but it is underfunded. There is no program aimed at preventing unhealthy eating, alcohol consumption, obesity, or other risky behaviors. The government provides physical, cognitive, and behavioral rehabilitation services for free, but only a few of these services exist, they are not available in all areas, they are underfunded, and they are often costly for patients with disabilities. What are the key changes that need to be made? The existing screening programs for the early detection of conditions that lead to disability must cover 100 percent of newborns. It is necessary to conduct an extensive study to find out what other such screening programs are needed. Primary medical care services (such as GPs and dentists) must be provided in areas where this type of care is currently absent. Habilitation and rehabilitation services must be better developed and funded. It is necessary to continue to increase and assess the accessibility of medical facilities, including GP practices. Health Daniel Daniel is twenty-three years old and likes to watch sports on TV, especially football. He suffers from bullous epidermolysis, a rare, incurable, non-contagious genetic condition, that causes his skin to lack the necessary collagen, leading to wounds developing all over his body, which need to be bandaged and disinfected. Daniel spends most of his days in front of the computer, at home, because exposure to low or high temperatures can cause new wounds on his skin. His mother is the President and founding member of an NGO set up at the initiative of thirty-one families who care for a family member with this disease. “They are rejected by society, because their disease is visible. Daniel went to school for the first eight grades, but after that he had to stay home, because of his wounds. Other children with this disease manage to study further, they go to high school, college, depending on how severely they are affected. People believe that it is something transmissible and that they shouldn’t sit next to them. They are rejected in kindergartens, schools. They require attention from educators, teachers, because even a push can cause a lesion, because their skin is very sensitive. It is a disease that can really affect your mental health. The maintenance treatment consists of dressings, disinfectants, ointments, IV therapy, operations, and all these are very expensive, as much as over 8,000 RON per month. The Ministry of Health covers 1,800 RON, and the national program for this disease is carried out in hospitals, where the doctors sometimes order certain dressings which we, in fact, cannot use. If our GP could give us a prescription, we could get exactly what we needed.” 266 Health 7.1 Limited access to treatment and public health services Persons with disabilities must have unrestricted access to all treatment and prevention services that they need. The National Health Insurance House (NHIH) covers a basic package of treatment services for all insured individuals, including primary, emergency and specialized medical care, from the Single National Social Health Insurance Fund (SNSHIF). The Ministry of Health provides funds from the state budget for public health programs.561 Persons with disabilities should be able to access primary medical care (through general practitioners), emergency and specialized medical care (provided in hospitals and outpatient wards), and public health insurance services (such as immunizations, prevention and treatment of communicable illnesses, and health promotion initiatives) among others. These services should be patient- oriented and organized within a continuum of care - an internationally recommended best practice which implies organizing an integrated and multidisciplinary (medical and social) service system that meets the needs of patients from the diagnosis of their disability to the end of their life.562 In such a system, a series of specific services is essential at all stages including prevention, early detection of the disability, and rehabilitation of physical, cognitive, and behavioral functions. Rehabilitation is defined as “an active process, through which those who have disabilities as a result of injuries or illnesses fully recover or, if it is not possible to fully recover, reach their optimal physical, mental, or social potential and are integrated into the environment that suits them best.”563 National preventive programs have a crucial role to play in the early identification or mitigation of factors that lead to disability. The main risk factors that are currently causing permanent disabilities among Romanian adults are high blood pressure, unhealthy eating habits, smoking, consumption of alcohol, and a high body mass index.564 National prevention programs are required to reduce the prevalence of disabilities caused by these factors, but existing programs in Romania are currently insufficient. Screening is a way to mitigate the prevalence of disability by ensuring the early identification of risk factors from birth, which is typically achieved using pregnancy monitoring or through neonatal screening programs and then the swift delivery of treatment, if such a potentially debilitating disorder is identified. The level of functionality of individuals is considered to be an important indicator for measuring the health of the population. Functionality includes aspects such as an individual’s capacity to see, to use their hands, to communicate in relations with others, to work, and to move.565 Many persons with disabilities require rehabilitation services to restore or improve these functions, which ensures their participation in social life. Without the required rehabilitation, many persons with disabilities are not capable of going to school, working, being socially active, or even accessing medical services. 561 All categories of services funded from both sources are described in Law no. 95/2006 on the healthcare reform, republished, with subsequent amendments. 562 According to the WHO, the continuum of care entails using a reference system to link services at all levels: prevention and early identification of the disability (such as information and screening); primary health care and specialized outpatient care; hospitalization; residential or home care services; specialized services of physical, cognitive, behavioral rehabilitation; and psychological and social support services. 563 Ministry of Health (2010). 564 NPHI (2018). 565 European Physical and Rehabilitation Medicine Bodies Alliance (2018). 267 Health Description of the problem In Romania, the self-perceived health status of persons with disabilities is much lower than that of other individuals. Self-perception of health, although it is a subjective measure, is a valid indicator to measure the health status and the quality of life of individuals.566 According to EU-SILC data, in 2018, only 21 percent of Romanian adults with severe disabilities or some disabilities reported their health status as good or very good compared to 88 percent of individuals without disabilities (Annex-Table 50). The proportion is higher among individuals with a tertiary education and those aged between 18 and 49. Persons with disabilities consider their medical needs are not met to a greater extent, most of the time for financial reasons. The EU-SILC data for 2018 show that only 2 percent of individuals without disabilities who had medical (non-dental) needs in the previous 12 months567 considered that their needs were not met. However, the proportion rose to 18 percent for those with some disabilities and 42 percent for those with severe disabilities. This percentage for persons with severe disabilities is the highest in the European Union, while for those with some disabilities, the Romanian percentage is lower only than those of Estonia, Greece, and Latvia. Unmet medical needs are reported more often by elderly individuals, those with only up to a lower secondary level of education, and individuals with low incomes, or living in villages and small towns. Of those who consider that their medical needs were not met, 51 percent mentioned financial constraints as main reason followed by the waiting list (12 percent) and the practice of wait-and-see if the health problem improves on its own (13 percent). Satisfaction of the need for dental care568 for persons with disabilities was equally low, mostly because of the high costs of accessing such services.569 566 Palladino et al. (2016). 567 Among persons with severe disabilities, 98 percent reported having needed a consultation or medical care in the previous 12 months, while the percentage was 97 percent for those with some disabilities and 80 percent for those without disabilities. 568 Of the persons with severe disabilities, 92 percent reported having needed dental care in the previous 12 months, while the percentage was 91 percent for those with some disabilities and 82 percent for those without disabilities. 569 Of the persons with severe disabilities who had dental care needs in the previous 12 months, 23 percent did not have their needs met in 2018, while the percentage was 15 for those with some disabilities and 5 for those without disabilities. The main reason given for not consulting by a dentist was the cost being too high, which was reported by 82 percent of individuals with severe disabilities, 73 percent of persons with some disabilities, and 64 percent of the individuals without disabilities. 268 Health FIGURE 35 The percentage of individuals with unmet medical needs among all individuals with such needs in the previous 12 months in the EU, 2018 (percent) Romania 2% 18% 42% Greece 21% 24% 29% Estonia 13% 28% 29% Latvia 8% 21% 28% Denmark 4% 11% 23% Poland 14% 16 17% Slovakia 4% 9% 16% Finland 5% 12% 16% Sweden 7% 12% 14% Bulgaria 5% 8% 12% Lithuania 3% 5% 11% Slovenia 4% 6% 10% Ireland 2% 5% 10% Hungary 8% 10% Italy 5% 7 8% Croatia 5% 7 8% Portugal 2% 6 7% Belgium 2% 5% 7% Netherlands 2 3% 6% France 3% 4% Cyprus 2 3% Czech Republic 3% Malta 1 2% Luxemburg 1 2% Austria 0 1 2% Spain 0 1% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: Calculations made by the World Bank using EU-SILC 2018 data for the European Union states, except for Germany. 269 Health Explanation of the problem According to the WHO,570 healthcare services must meet the following conditions: (i) they must be easily accessible by any patient, irrespective of their disability, their area of residence, or their financial capacity and (ii) it must be focused on the patient’s needs. Accessible services Basic medical care571 is not 100 percent free for persons with disabilities. Any individual who has a disability certificate is automatically insured and exempted from the copayment for medical services included in the basic package. Nevertheless, certain medical specialties are dominated by private providers that have no contract with the county or Bucharest Health Insurance Houses. Consequently, patients must pay out of their own pocket, usually the full cost of the service. For instance, in 2018, in Bucharest there were 3.142 active dentists,572 but only 157 of them were in a contractual relation with the Bucharest Health Insurance House.573 The qualitative research and a review of the list of suppliers on the webpages of county Health Insurance Houses suggest that a similar situation exists in other cities in the country with most patients only having access to private dental services. Accessing dental care sometimes entails higher costs for persons with disabilities than for those without disabilities. They may need to incur higher travel costs in order to reach the nearest medical office that can provide the necessary treatment, such as a dental hospital that can provide general anesthesia for persons with mental disabilities, a service which is rarely available in regular dental offices, or a dental office with a patient chair that is accessible to persons with disabilities who use a wheelchair. Participants in the qualitative research reported experiencing similar issues in trying to access physical and cognitive rehabilitation services or for other specialized services for which there are not sufficient providers with a contractual relation with the Health Insurance Houses. There are large disparities in the geographical distribution of general practitioners and specialist doctors. According to the National Institute for Statistics, in 2018, about 50 percent of the country’s GPs were found in 10 of the 42 counties, while 60 percent of the specialist doctors were located in 8 counties, and 50 percent of the dentists in 8 counties.574 GPs are mostly located in the counties of Timiș, Cluj, Dolj, Iași, Constanța, Bihor, Mureș, Brașov, and Bucharest City, in which about 30 percent of the country’s population are concentrated. In 2019, there was no GP in 12 percent of communes in Romania, while 44 percent of the country’s 3,187 urban and rural localities do not have enough GPs, especially in rural areas.575 These disparities severely limit the access that persons with disabilities have to both primary care services and specialized care, including those for rehabilitation. In an interview for the qualitative research carried out for this report, a respondent raised the issue that the over 1,400 specialists in 570 WHO (2017a). 571 The basic package of medical services provided to insured individuals, with or without disabilities, includes the following categories of services: primary medical care from a general practitioner; basic dental medical care; hospital care; specialized outpatient care; specialized outpatient care for medical rehabilitation; outpatient medical care for paraclinical specialties; emergency home consultations and unassisted medical transportation; home-based medical care; palliative care at home; medical care for rehabilitation in spa establishments and medical recovery in other nursing homes; medication with and without copayment in outpatient treatments; and medical devices for the recovery of organic or functional deficiencies for outpatients (NHHI, 2018). Pursuant to Law no. 95/2006 and to the Framework Contract concluded between the service providers and the Health Insurance Houses, for some services, medication, or devices, the insured individuals are liable for a copayment. 572 NIS (2019: 17). 573 Health Insurance House of Bucharest Municipality (2018). 574 SAN104A indicator - Health professionals per categories, types of property, gender, macro-regions, development regions and counties (NIS, Tempo Online database). 575 Petrenic (2020). 270 Health physical medicine and rehabilitation576 are distributed unequally, most of them choosing to work in big cities and in university centers, both for professional reasons and for the quality of life. The deficit of GPs in Romanian localities, 2019 TABLE 10 Deficit by locality (no. of Total deficit Number of localities with deficit practitioners) (no. of practitioners) 1,069 1 1,069 231 2 462 49 3 147 22 4 88 7 5 35 11 6 66 4 7 28 3 8 24 5 9 45 2 10 20 7 11-15 87 2 20-24 44 2 34-38 72 1,414 2,187 Source: Petrenic (2020). There is not enough information on the capacity of existing medical services to ensure physical and informational accessibility for patients with disabilities. Healthcare facilities must meet certain requirements in terms of ensuring physical and informational accessibility for patients with disabilities in order to be accredited by the National Authority of Quality Management in Health (NAQMH). At the end of June 2020, 228 out of a total of 731 hospitals had been evaluated and had been classified in one of the accreditation categories of NAQMH.577 Hospital accreditation is scheduled to end in 2021 within the ongoing Multiannual Accreditation Plan. On the other hand, the tools for evaluating outpatient units (including GPs’ surgeries) were approved as late as July 2020, and therefore it is possible for their accreditation to start in 2021. According to NAQMH statistics, not all evaluated hospitals meet all of the physical and informational accessibility requirements (Figure 36). 576 Physical Medicine and Rehabilitation is a clinical medical specialty dealing with the rehabilitation of individuals of all ages with debilitating health conditions and their comorbidities, addressing mainly related impairments and activity limitations with the purpose of facilitating the person’s physical and cognitive functioning (including their behavior), their participation in daily life (including quality of life), and any changes in their personal or environmental circumstances (Ministry of Health, 2017). 577 The NAQMH accreditation categories are: Category I – Accredited; Category II – Accredited with recommendations; Category III – Accredited with reservations; Category IV – Accredited with a low level of trust; and Category V – Decision to extend the accreditation process (NAQMH, 2019). 271 Health FIGURE 36 Healthcare facilities with beds that met the physical and informational accessibility criteria, June 2020 (percent) Physical Accessibility Criteria The door width allows access for the patient, 97% including with walker,crutches, wheelchair The beds in the room are arranged to enable access by health professionals and patients, 96% including a wheelchair and stretcher The stairs have at least one hand rail 96% Moving from one space to another is possiblewithout obstacles in the doorway (thresholds, cables etc.) 90% Access ways have adapted ramps (angle under 25o) or other access facilities 89% The stairs are wide enough to allow patient evacuation on stretchers 84% The space conditions and circuits to receive/hand-over, deposit personal values and effects of the patients 77% allow access for patients with disabilities The hallways are wide enough to allow for a stretcher or rolling bed to be turned around 66% Bathrooms allow access by and easy use for persons with disabilities 50% The door opening system is also accessible for persons with disabilities 44% The hallways have handrails 40% Informational Accessibility Criteria The hospital has regulations for sign language with admitted patients with disabilities 81% The hospital provides, if needed, the services of a sign language interpreter 73% The hospital works with organizations in the industry to take in, if applicable, medical response dogs during 44% the hospitalization of patients with disabilities Source: NAQMH. Note: N=228. The percentage of newborns who are not screened for disabilities at birth is substantial. Unlike other countries in the European Union where screening for 20 or more disorders is a regular practice (such as Austria, Hungary, and Slovakia),578 in Romania national programs screen only for hearing, phenylketonuria, and congenital hypothyroidism.579 However, screening is performed only in obstetrics-gynecology wards or hospitals - public or private - that have trained personnel and the required equipment or laboratories to perform the tests.580 Also, the screening is provided only with the informed consent of the parents. In 2019, only 55 percent of newborns were screened for hearing problems,581 and only 84 percent for the early identification of phenylketonuria and congenital hypothyroidism (Table 11). 578 Luxner (2020). 579 These measures are part of the National Mother and Child Health Program funded by the Ministry of Health and coordinated by the National Institute for Mother and Child Health “Alessandrescu-Rusescu” in Bucharest. 580 In October 2018, the hearing screening program was extended to 188 healthcare facilities. Before then, the program was implemented only in 17 healthcare facilities (Ministry of Health, 2018). The other two programs are designed to reach 170 thousand newborns per year (NIMCH, 2017). 581 The indicator is limited because the screening measures are also implemented in private obstetrics-gynecology wards and hospitals, and some children are born in these medical facilities, and all these situations are not reflected in the public monitoring system. 272 Health TABLE 11 Newborns covered by neonatal national screening programs, 2019 Value Number of newborns in 2019 188,315 Number of newborns in healthcare facilities that implement congenital deafness 103,038 screening Number of newborns screened for hearing problems in healthcare facilities that 70,348 implement congenital deafness screening The percentage of hearing screening beneficiaries from the total of newborns in 55% healthcare facilities that implement this screening Number of newborns tested for phenylketonuria and congenital hypothyroidism 157,726 The percentage of newborns tested for phenylketonuria and congenital 84% hypothyroidism of the total newborns Source: National Institute of Statistics (NIS) for the total number of newborns; National Institute for Mother and Child Health (NIMCH) for the other data. Romania’s existing measures for preventing both early and lifelong disabilities are insufficient. The only national programs that aim to prevent disabilities are the “Stop smoking!” National Program582 and the National Program for the Evaluation and Promotion of Health and Health Education.583 The latter program, however, has one of the lowest budgets of all national programs and is limited to small-scale interventions organized at the county level that include health information and education and activities to evaluate the population’s health status. Patient need-oriented services Physical, cognitive, and behavioral patient rehabilitation seems to be a low priority in the healthcare system. The qualitative research carried out for this report revealed a series of shortcomings in the rehabilitation services. First, there are not enough of them, especially outpatient units, and they do not exist in many towns and in rural areas. Second, the insurance budget for these services is low, and not all current service providers have contractual relations with the Health Insurance Houses at county level and at the level of Bucharest municipality. Under these circumstances, many patients end up having to pay the full cost of these services. Third, there are no integrated and multidisciplinary practice guidelines for providing rehabilitation services to persons with disabilities. 582 The “Stop Smoking!” National Program is the Subprogram for preventing and tackling tobacco consumption of the National Program for the Evaluation and Promotion of Health and Health Education of the Ministry of Health. It was initiated in 2007 and is coordinated by the “Marius Nasta” Pneumophtisiology Institute. Details of the program can be found at: https://stopfumat. eu/despre-programul-national-stop-fumat/. 583 The program is implemented by the National Public Health Institute, through the Public Health Directorates in each county. 273 Health BOX 42 Recommendations of the World Health Organization to meet the need for rehabilitation services by 2030 1. Promoting the principles of rehabilitation in all services that provide patient care in any phase of an illness (sub-acute, acute, and long term) and in any environment - at home, in the community (such as schools, jobs, or social clubs), and in healthcare facilities. 2. Prioritizing the achievement of maximum functionality as a care objective in all categories of medical services. 3. Implementing a continuum of care by integrating physical, cognitive, and behavioral rehabilitation services with primary medical care, with preventive services, and with other medical and non-medical support specialties (such as social and psychological assistance or speech therapy). 4. Strengthening the multidisciplinary human resources involved in rehabilitation medical services (by increasing the number of specialists involved in rehabilitation and by providing them with continuous training). 5. Ensuring the proper financing of rehabilitation medical services. 6. Developing a strategy and an operational plan to develop rehabilitation services. 7. Obtaining political or leadership support at the national and local levels to implement the rehabilitation strategy. Source: WHO (2017b). The current administrative organization of medical services makes it difficult to implement the “continuum of care” and “patient-oriented care” principles. Currently, both curative and preventive care are fragmented, with patients being forced to access essential services by going to different healthcare facilities, even in different cities. Moreover, patients with a long-term disability usually have to have interact frequently with the health system in ways that should not be necessary (for example, to receive their regular prescriptions, they must personally visit their GP or specialist each time). Regulations on the reimbursement of services covered by the SNSHIF limit the access of persons with disabilities to rehabilitation services. Health Insurance Houses reimburse patients for rehabilitation services but can only contract doctors, whereas physical and cognitive rehabilitation services (such as physical therapy, speech therapy, psychotherapy including cognitive-behavioral therapy) are delivered by other types of specialists. According to the qualitative research, if an organization aims to provide beneficiaries with free rehabilitation services (covered by the SNSHIF), it can only do that by contracting with rehabilitation and psychiatrist doctors who: (i) evaluate the patient with disabilities, recommend the necessary services, and include the respective services into the patient’s intervention plan and (ii) are able to process the claim for reimbursement of these services on the basis of their contract with the Health Insurance House. 274 Health Recommended measures The following measures are recommended: 1 The Ministry of Health to take the necessary measures (including allocating funds, training health professionals, properly endowing health establishments, and informing parents) to ensure that: (i) the current neonatal screening programs reach a coverage of 100 percent of newborns registered every year and (ii) a scientific study is carried out of the need and opportunity to implement a neonatal screening program for an extended panel of diseases, to prevent situations of disability. 2 The Ministry of Health to make it possible for networks of services for persons with disabilities to be developed that involve a range of key professionals in the primary medicine system (such GPs, dentists, and community nurses) and to ensure that these networks also cover regions that are currently insufficiently served such as less developed counties, rural areas, and small towns.584 3 The Ministry of Health, in collaboration with other professional associations and associations of patients with disabilities, to design and implement measures to ensure the optimal coverage and quality of habilitation and rehabilitation services, including for persons with disabilities. Such measures to include adopting a case management protocol for cases that need rehabilitation, developing an effective interdisciplinary referral system, and integrating the principles and priorities of rehabilitation into both primary care and secondary care (for example, by training medical staff and developing and disseminating standards of practice). 4 The Ministry of Health and the National Health Insurance House (NHIH) to evaluate, with the aim of improving the legislation, how regulations for the reimbursement of services covered by the Single National Social Health Insurance Fund (SNSHIF) hinder the delivery of physical, cognitive, and behavioral rehabilitation measures.585 5 The Ministry of Health and the NHIH to amend the legal framework for contracting services related to the medical act to increase the number of these services and the number of specializations that can recommend their use.586 6 The Ministry of Health to identify diagnoses that could lead to a worsening of bodily functions or structures that could lead to disability and to create dedicated national registers. 584 Ensuring the mobility of medical services (for example through telemedicine, mobile clinics, and the easy transport of medical staff to communities where there are no such services) is one of the measures that can be taken to increase the coverage and quality of primary and specialized medical services. For solutions related to increasing the capacity of human resources in the medical sector, see WHO (2016b). 585 Such as physiotherapy, speech therapy or psychotherapy such as cognitive-behavioral therapy. 586 This measure will be implemented after the evaluation recommended in measure no. 4 is done. 275 Health 7.2 7.2 Limited exercise Limited of the exercise right of the to sexual right and to sexual and SHORT IN health reproductive health reproductive What are the rights of persons with disabilities? Persons with disabilities must have the freedom and opportunity to enjoy their sexual and reproductive health. What is the situation in Romania? Persons with disabilities are not provided with adequate information or specific education on their rights to sexual health and birth control and family planning. Among women aged 15 to 49: “It was largely their decision to use contraception” 26% 36% of women with disabilities VS of women without disabilities “Did not have the freedom to refuse intercourse with their partner” 25% 14% of women with disabilities VS of women without disabilities What are the causes of this problem? Romania has no current programs that provide information, education and access to sexual and reproductive health services. Nor are there any sexual and reproductive health policies aimed at persons with disabilities. 276 Health Sexual education is taught in both mainstream and special schools as part of the Education for Health course. Sex education However, only 6 percent of students of all ages participated in this course during the 2014/2015 academic year. In residential centers for adults with disabilities, sexual education is taught only occasionally, usually on the 6% initiative of members of the staff. Persons with disabilities have no access to free contraceptives. Neither screening programs for the early detection of breast cancer and cervical cancer nor anti-HPV vaccination programs include any activities targeting persons with disabilities. According to the interviews conducted for this report, medical personnel, staff of the residential centers, and family members all intervene to control the sexual and reproductive health of persons with disabilities. This may involve strict monitoring of their interactions with other people, prescribing oral contraception or even sterilizing them without their consent. What are the key changes that need to be made? Teachers must be given training in how to adapt the Education for Health curriculum to the needs of students with disabilities, including the topic of sexual and reproductive health. It is necessary to have a national strategy on sexual and reproductive health drawn up by the government to include special measures for persons with disabilities. Modern contraceptives must be available for free to persons with disabilities. The staff of social services that deal with persons with disabilities must be given training in sexual and reproductive health issues and how to provide information and education in this field to persons with disabilities. 277 Health 7.2 Limited exercise of the right to sexual and reproductive health Persons with disabilities must have the freedom and opportunity to enjoy their sexual and reproductive health. Persons with disabilities must be provided with proper information about sexual and reproductive health (SRH)587 and access to a broad range of SRH services588 to prevent situations that might have negative long-term consequences for their general health status, family life, and social inclusion. These negative consequences might include unwanted pregnancies, complications due to sexually communicable infections, pregnancy and childbirth complication, sexual violence, avoidable deaths caused by cervical cancer. Although SRH services are part of the general health service package in Romania, two factors justify a separate analysis of these services. First, the CRPD refers separately to sexual and reproductive health. Second, during the consultations organized as part of the process of preparing this report, several participants (persons with disabilities and their representatives and other civil society representatives) highlighted the importance of addressing the sexual and reproductive health of persons with disabilities separately, as this is an area that is not given enough attention by the health system. Description of the problem Persons with disabilities are not provided with adequate information, health education, or services to exercise their right to sexual and reproductive health. In the World Bank survey of persons with and without disabilities, about 26 percent of women with disabilities who are of childbearing age (aged between 15 and 49) reported that they were the ones that had mainly decided to use contraception, while 36 percent stated that it was a joint decision with their partner. In comparison, 36 percent of women without disabilities stated that they made their own decisions regarding contraception. The proportion of women who make their own decisions about contraception is higher in urban areas and among those with more education. Similar proportions of sexually active women with disabilities (16 percent) and without disabilities (20 percent) had used modern contraceptive methods in the previous two years. Alarmingly, about 16 percent of the women with disabilities and 14 percent of those without disabilities reported that they did not have the freedom to refuse intercourse with their partner. 587 According to the UN definition of “sexual and reproductive health,” formulated in the 1994 Programme of Action of the International Conference on Population and Development, it represents “a state of complete physical, mental, and social well- being and not merely the absence of disease or infirmity, in all matters relating to the reproductive system and to its functions and processes” (United Nations Population Fund, 2004). 588 According to the World Health Organization, SRH encompasses a broad range of health matters including family planning, mother and newborn care, the prevention, diagnosis, and treatment of sexually communicable diseases, including HIV, teenage SRH, screening for cervical cancer, and preventing and managing infertility. 278 Health FIGURE 37 Percentage of women aged 15 to 49 years old who make their own informed decisions on sexual relations, the use of birth control methods, and the use of sexual and reproductive health services Women who state that... ...the use of birth control methods is mainly ...they take decisions about their sexual their decision (reproductive) health 36% 56% 24% 44% 29% 43% ...they can say “no” to their husband/partner when they do not 61% 54% 52% Women aged 15-49 years old: without disabilities with some disabilities with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). Explanation of the problem In order to enjoy sexual and reproductive health, persons with disabilities must have access to information and adapted services provided by professionals who understand their disability-specific needs. More specifically, the following three conditions are key: 1. Persons with disabilities must have access (both in school and in society) to age- appropriate information on reproductive and family planning589 to enable them to make healthy choices regarding their sex life and disease prevention. 2. Persons with disabilities must have access to the same range of SRH services as provided to other people.590 Such services include access to family planning, screenings or vaccinations to prevent reproductive system disease, and prenatal and postnatal care. These services must be of the same range, quality, and standard of free or affordable health care as is available to persons without disabilities. 3. Professionals who deliver SRH information and education programs and services must be trained to meet the specific needs of persons with disabilities. Access to information and education Romania has no current policies to increase the access of persons with disabilities to SRH information and education or services or to train professionals in how to meet the needs of these persons. The last National Strategy for Sexual and Reproductive Health covered the period 2002 to 2006. The National Strategy for Health 2014-2020 includes specific SRH measures, such as providing free contraception, enhancing the reach of SRH providers, disseminating SRH information to the population, and implementing structured cervical and breast screening programs, but most of them 589 CRPD, Art. 23 para. (1) let. b). 590 CRPD, Art. 25 para. (1) let. a); Art. 23 para. (1) let. b). 279 Health have not been implemented.591 Moreover, the Strategy does not stipulate that the actions aimed at the general population should be adapted to meet the needs of persons with disabilities. Thus, at the time of writing this report, only the SRH public policy principles promoted by the Patient’s Rights Law (Law no. 46/2003) are in force, which are the right of women to decide whether or not they will have children, the right of patients to choose the safest reproductive health measures, and the right of patients to efficient and risk-free family planning methods.592 Children and young persons with disabilities have limited access to information and education in school. Since 2004, sexual education has been taught under the subject matter “Education for Health” in both mainstream and special schools. However, the course has extremely low coverage, especially among students with disabilities. A report of the Presidential Administration in 2016 indicated that, during the academic year 2014-2015, “Education for Health” had been taught in only approximately 30 percent of schools in Romania and had enlisted only 6 percent of students of all ages.593 Moreover, the curriculum is not adapted to the needs of students with disabilities, nor is there any information about the availability of manuals in formats adapted for students with disabilities. Interventions outside the school do not target children or adults with disabilities either. The National Institute of Public Health (NIPH)594 organizes annual community information and education (CIE) actions through the county Public Health Directorates (PHDs) to increase awareness among the general public and vulnerable groups of certain health risks that are considered a priority. An ad hoc analysis of the activity reports published on the websites of the PHDs carried out for this report revealed that CIE actions are underfunded595 and organized mainly in schools, the media, or in public places such as parks and streets, but persons with disabilities are not among the specified target groups. A qualitative research that was conducted in 2014 in residential centers for adults with disabilities highlighted that SRH education for persons with disabilities was limited to small local initiatives, usually initiated by employees, by the persons with disabilities, or by their families.596 Access to the same range of SRH services as persons without disabilities Persons with disabilities do not have access to free methods of contraception. According to current regulations, free methods of contraception597 may only be dispensed by specialist doctors in obstetrics-gynecology in family planning practices located in obstetrics-gynecology wards or hospitals. However, the available data indicate that there are frequent discontinuities in provision, both to the general public and to persons with disabilities. For example, in 2018 and 2020, the Ministry of Health did not earmark any funds for the procurement of methods of contraception.598 591 NIPH (2018) and IPPF (2016). 592 Law no. 46/2003 on Patient’s Rights, Art. 28. 593 The scarce existing data indicate three reasons for this limited coverage. First and foremost, the subject matter is optional, meaning that it must be approved by the school board, following consultations with students, parents, and teachers. Second, in some schools, there are not enough teachers who have been trained to teach such content. Last but not least, in some communities, schools are subject to conservative pressures from certain social entities (such as the Church or parents’ associations) and thus decide not to provide this course. 594 Every year, the National Institute of Public Health implements the “Health Promotion and Education for Health” sub-program financed by the Ministry of Health (Order no. 377/2017). 595 Although implemented at the national level, the sub-program “Health Promotion and Education for Health” has a low budget (only about 1.5 million RON per year), while its goal is to reach all 42 counties, about 500 thousand people in vulnerable groups, and almost 1 million from the general public. 596 Gîrlescu et al. (2014). 597 The funding of these methods is covered, pursuant to law, by state budget funds (Ministry of Health), under Sub-Program VI.2 Women’s Health implemented by the National Institute for Mother and Child Health “Alessandrescu-Rusescu.” 598 NIMCH (2018) and (2020). 280 Health Persons with disabilities have limited access to screening for breast cancer and cervical cancer599 and to anti-HPV vaccination. The cervical cancer screening targets women aged between 25 and 64 years old and is only available in a limited network of public hospitals, laboratories, and diagnostic centers. Women who need a free test have to go to one of these facilities,600 which are not necessarily accessible to persons with mobility impairments. The pilot program for breast cancer screening, which was planned to start in March 2020,601 does not include any activities to increase access for persons with disabilities.602 The free anti-HPV vaccination campaign was initiated in January 2020, but its description does not mention any actions designed to reach persons with disabilities.603 Training of professionals to meet the specific needs of persons with disabilities The medical and psychosocial professionals who work in the services dedicated to persons with disabilities are not trained to provide SRH advice. SRH counselling is not included in the initial training of medical staff, and continuing training opportunities are generally scarce and have limited coverage.604 There is no indication that the existing training programs cover the issue of SRH and persons with disabilities. The same situation applies to staff in social services. For example, most social services providers who participated in the qualitative research carried out for this report indicated that they would not know how to help their customers to exercise their sexual and reproductive rights. Limited access to SRH services is caused not only by structural issues with service provision but also by a biased cultural context. A previous survey605 as well as the interviews conducted for this report indicate that persons with disabilities are frequently subject to sexuality and fertility control. Such control, conducted by their family or in institutions by medical personnel, can consist of prescribing oral contraception or sterilization without consent to strict monitoring of their interactions with other people. Such practices are frequently exacerbated by the fears of the responsible staff for the physical safety of person with disabilities, by assumptions about the capacity of persons with disabilities to have children and provide care for them, and by the belief that persons with diminished capacity do not have sexual or relational needs and that they should be prevented from having children. Moreover, some members of their families and of the psychosocial and medical staff share the belief that mainstreaming the sexual needs of persons with disabilities is a social and health risk. 599 The sub-program for active early cervical cancer screening using the Babeș-Papanicolau test for the eligible female population is financed by the Ministry of Health, and the target is for approximately 50 percent of women aged 24 to 64 years old should be reached by 2022 (Order no. 377/2017). 600 In 2018, the Ministry of Health used funds granted by the International Bank for Reconstruction and Development to purchase eight mobile screening units, one for each development region. They should contribute to the sub-program by screening people with limited access to healthcare services (such as the rural population and marginalized groups). 601 The Ministry of Health is implementing a pilot project between March 2020 to October 2023 financed by European Funds. However, the project only targets 30 thousand women aged 50 to 69 years old who live in four development regions (North- West, West, North-East, and South-East). 602 With no national program to provide adequate coverage, most of the population pays for such tests. Thus, a person would pay 80 to 140 RON for the Babeș-Papanicolau test (depending on the type of examination) and 300 to 400 RON for a bilateral breast ultrasound. 603 The vaccine is administered by the family physician, but there is a priority target group that includes girls aged 11 to 14 years old whose parents/guardians applied for the vaccination in 2017 and 2018, including those who are older, if they applied earlier. 604 IPPF (2016). 605 Gîrlescu et al. (2014). 281 Health BOX 43 Perceptions of barriers that prevent persons with disabilities from exercising their right to sexual and reproductive health Lack of SRH information campaigns for persons with disabilities “From the very beginning, we are told that it is not the case (for my daughter to receive information on SRH). There was no information (on SRH, though) it could have been provided by a family physician, who would bring the information to the persons with disabilities, maybe organize a meeting, a campaign. There are campaigns, but for normal young people. I haven’t heard anyone on TV talking about children or girls with disabilities. Have you? I haven’t. And if they are not included, their parents wouldn’t take them there (to the healthcare provider). You take the healthy one, you don’t think that maybe you should take this one too. As I already told you: (they should give) information to us, they should tell us that they are providing the anti-HPV vaccination to girls, including girls with disabilities.” (Mother of a young girl with Down syndrome, Buzău county) SRH services not adapted to needs of persons with disabilities “Where can I take M. for a gynecological exam, who would examine her? I haven’t been to one, and I haven’t even tried, what are they to do to her? How can they look, where would they look? I can only take her for an ultrasound test every one or two years, but not a gynecological examination. How could we explain it to her? And nobody teaches us, I think that if I went to the family doctor, he would ask me to leave. They don’t like that.” (Mother of a young girl with Down syndrome, Buzău county) Modern contraception is not free of charge “She takes the medication (contraceptive) this month, she doesn’t take it next month. She didn’t go to the (family) planning (to have an IUD inserted) because she said she was on the pill. She doesn’t use condoms. Meanwhile, she gets pregnant. She [ended up having] the children. They don’t provide the IUD free of charge in Buzău yet, but I manage to get it for free. The GDSACP gives it to me through the SERA Foundation. But you need to pay to have it inserted. It’d be nice if there would be a budget for inserting the IUD. In (other county) they already insert it free of charge.” (Community nurse, rural area, Buzău county) Lack of training for the medical and psychosocial staff “I don’t know what to answer, maybe only for those within the protection system, because otherwise we do not measure this in any way, we have never been interested in this matter, and we have not talked to any persons (with disabilities) about it. It’s difficult to speak of something I don’t know about, I don’t know what to answer.” (Representative of a social services provider, non- governmental sector, Buzău county) Fear for the safety of persons with disabilities “I take her out and then one guy may take advantage of her, and then what do I do? She can’t even say what happened to her. I can see she wants it, but it’s not possible. How can you let her do that, as a parent, you have to keep her in place.” (Mother, representative of a person with intellectual disabilities, Suceava county) Biases “They told me I couldn’t raise children.” (Woman with disabilities, Mehedinți county) “Given that his disability is sky high, but the sexual instinct is there, the same with her, and then we realize that we’ve increased the number of people living in the street, where do you take him?” (Representative of a private social services provider, non-governmental sector, Buzău county) “It’s out the question, I also think that considering the medication he’s on, and his mental illness, he wouldn’t think of it. No way! He doesn’t think of it. It might be a problem for others, but not for him, because, since he is like that, absolutely not. [...] To have those instincts, look after a woman... absolutely not.” (Representative of a person with intellectual disabilities, Mehedinți county) “I do not agree (they should have children), especially sick children. Especially those with mental disabilities, if the person is crazy, how can you let them raise their children? Whether the child is crazy or healthy, only God knows, but how can they care for them?” (Health mediator, urban area, Mureș county) “Sometimes I tell him: ‘One day you’ll get married.’ […] I talk to him, and he says: ‘What do you mean get married, mother, who would look at me I am sick, no girl would ever accept me.’” (Mother, representative of a man with disabilities, Buzău county) 282 Health “I can’t imagine, for example, a person who doesn’t have a leg, with whom they could have sex. I just can’t imagine, I didn’t have cases like this in my family or other friends, to know whether they have a partner or not.” (Seropositive person, Suceava county) Source: World Bank qualitative research (February-May 2020). Recommended measures The following measures are recommended: 1 The Teacher Training Centers (TTCs) to organize continuous training programs on how to adapt the “Education for Health” curriculum to the needs of students with disabilities. 2 The Ministry of Health to adopt a national sexual and reproductive health (SRH) strategy that includes measures to ensure that the right to sexual and reproductive health of persons with disabilities is respected. 3 The Ministry of Health to adopt practice guidelines for the provision of SRH services to persons with disabilities. 4 The Ministry of Health to include modern contraceptives on the list of medicines and health devices subsidized by national public health programs. 5 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to modify the mandatory minimum specific quality standards for social services in by introducing an obligation for specialized staff of public and private social services to be given detailed training in how to provide information to persons with disabilities on the exercise of their SRH rights. 283 Health 7.3 7.3 Limited access Limited to treatment access with to treatment with dignity and IN SHORT dignity and respect respect What are the rights of persons with disabilities? Persons with disabilities have the right to use quality healthcare services on an equal basis with the rest of the population and to not be discriminated against by the persons who provide the services. What is the situation in Romania? The percentage of persons with disabilities who felt discriminated against or harassed because of their disability when accessing healthcare, in the previous 12 months, according to the national The inadequate attitudes of the survey conducted for this report in 2020: medical staff towards persons with disabilities are oftentimes one of the 31% main access barriers to healthcare 17% services. With some With severe disabilities disabilities The qualitative research conducted for this report showed that: Medical staff tend to Medical staff tend to Medical staff tend to underestimate the underestimate the ignore the importance of physical or cognitive capacity of patients with the expertise that patients abilities of patients with disabilities to care for with disabilities have disabilities. themselves. accumulated about their own conditions. 284 Health What are the causes of this problem? Medical schools provide The continuous training The monitoring and their students with no programs provided to assessment of the basic training on the healthcare employees do provision of healthcare rights and needs of not usually contain any services does not persons with disabilities. courses related to the measure or take into rights and needs of account the level of persons with disabilities. satisfaction or dissatisfaction that persons with disabilities have with these services. What are the key changes that need to be made? It is necessary to develop instruments and guides to teach medical staff how to interact with persons with disabilities. It is necessary to condition the functioning of healthcare services on their training of their staff in the rights of persons with disabilities. Continuous training programs on the rights of persons with disabilities must be provided to existing employees in healthcare facilities and the personnel should be required to take the training again at regular intervals. The level of satisfaction of persons with disabilities with the healthcare services that they use must be measured. 285 Health 7.3 Limited access to treatment with dignity and respect Persons with disabilities should be able to use healthcare services of the same standard as the rest of the population, without being confronted with discrimination and biases from the service providers. Description of the problem The health and welfare of persons with disabilities depend on the opportunity to have unlimited access to healthcare services, but the inadequate attitudes towards persons with disabilities manifested by healthcare personnel are often one of the main barriers to accessing such services. According to the World Bank survey of persons with and without disabilities, about 31 percent of persons with severe disabilities who accessed healthcare services in the previous year reported that they felt discriminated against or harassed at least once because of their disability. A significant proportion of persons with some disabilities suffered similar discrimination. In the qualitative research carried out for this report, the respondents indicated that, without proper training, healthcare personnel tend to underestimate the physical or cognitive abilities of patients with disabilities, minimize their capacity to care for themselves or to adopt health protective behaviors, or ignore the importance of the expertise that patients with disabilities have about their own conditions. Percentage of persons with disabilities who felt discriminated against or FIGURE 38 harassed in the previous 12 months because of their disability when accessing to healthcare as percentage of all those who accessed such services Persons with some 4% 6% 8% 83% disabilities Persons with severe 9% 13% 9% 69% disabilities To a great extent To some extent To a small extent Not at all Source: World Bank Survey of persons with and without disabilities (2020). Explanation of the problem At least three requirements must be met in order to address this issue: 1. Healthcare personnel should be trained to assist patients with disabilities. 2. Healthcare personnel should know the rights of persons with disabilities and be sensitive to their needs. 3. The compliance of healthcare providers with the rights of persons with disabilities should be monitored. The basic training of healthcare personnel does not include any courses or modules on the rights and needs of persons with disabilities. Faculties of medicine and medical post-high-school education include courses in their compulsory curriculum that tackle some theory and skills for identifying patients’ needs and for providing patient-centered communication and care, without any particular reference to persons with disabilities. The courses have different names (such as Fundamentals of healthcare communication, Communication with the patient, Medical Psychology, 286 Health or Communication skills)606 and are included in the curriculum only in the first years of study. A typical graduate of a faculty of medicine benefits from formal training on patient rights, needs, and communication in their first three years of study before they start clinical practice. The provision of accredited continuous medical training (CMT) that addresses the rights and needs of persons with disabilities is very limited. Data available on the webpage of the Romanian College of Physicians (RCP), the body in charge with the accreditation of CMT programs for physicians, show that, during academic year 2019- 2020, none of the approximately 1,100 short-term courses provided by eight public universities607 addressed as its main topic the rights and needs of patients with disabilities or disability in general. Only 10 courses covered some related topics (such as Ethics and malpractice,608 Fundamentals of ethics and legislation,609 and Communication with the patient).610 Following a decision adopted by the RCP at the end of 2018, currently, besides Faculties of medicine, only medical institutes, medical associations, and the RCP county branches can be CMT providers. This excluded public, non-profit, and for-profit providers whose main activity was not the training of medical staff, although their portfolios included courses on psychosocial knowledge and psychosocial skills or communication skills with different categories of patients. As a result of this decision, the list of accredited RCP providers was reduced from almost 300 in 2018 to 90 in 2020. The is no public information available on the accredited courses for nurses.611 Necessary skills for medical staff to provide care for patients with disabilities BOX 44 1. Understand and accept the disability as a manifestation of human diversity. 2. Improve skills to be able to assess the functional consequences of disabilities and various medical conditions. 3. Learn some general etiquette principles for interacting with persons with disabilities. 4. Learn and understand the roles of other professionals from the integrated teams providing care for persons with disabilities. 5. Understand the national anti-discrimination legal framework, the CRPD, and the ethical standards and principles of reasonable accommodation and the universal design of healthcare services. 6. Provide patient-centered care, including the acceptance of patients’ perception of a quality life. Source: Kirschner and Curry (2009: 1334-1335). 606 As deduced from an ad hoc analysis of the study programs posted on the webpages of public universities of medicine, pharmacy, and dentistry. 607 During the academic year 2019-2020, eight out of the ten public universities of medicine were accredited to provide CMT. Besides the public universities, there are two private universities of medicine in Romania. https://www.cmr.ro/new/index. php/2020/02/cursuri-postuniversitare-2019-2020/ 608 The University of Medicine and Pharmacy “Iuliu Hațieganu” Cluj-Napoca provided five courses on ethics and malpractice, one of them entitled: “Ethics and Malpractice in Psychiatric Practice. Competence, incompetence and involuntary admission. Case studies.” The course was 30 hours long and was planned for only one group of 20 participants in the academic year 2019-2020: http://www.umfcluj.ro/images/fisiere/rezidentiat/2020/Oferta%20CPU%20final_mar2020.pd 609 The University of Medicine and Pharmacy Craiova provides two courses that cover the fundamentals of ethics and legislation unrelated to disability. 610 Courses on this topic were provided by The University of Medicine and Pharmacy “Carol Davila” Bucharest (3 courses), the Faculty of Medicine and Pharmacy Galați (1 course), and the Faculty of Medicine and Pharmacy Brașov (1 course). 611 The continuous training of nurses is regulated by the Order of Nurses, Midwives, and Medical Assistants in Romania (ONMMAR), which, similar to the RCP, accredits the training providers and the courses that they provide. With ONMMAR, besides the traditional providers (faculties of medicine and medical associations), providers may be NGOs, individuals, or even ONMMAR itself. ONMMAR provides the Psycho Assist service for nurses and midwives and makes available educational articles on communication with patients with psychiatric, visual, speech impairments, and other disabilities on their webpage: https:// www.oammrbuc.ro/index.php?categorie=20 287 Health Healthcare personnel have insufficient information on and awareness of the rights and needs of persons with disabilities. Some non-governmental institutions and organizations that are implementing projects through the EU or those supported by other international funding are running courses, conferences, and workshops on the rights of vulnerable persons, including the rights of persons with disabilities. Although some events do attract healthcare personnel, these are not large-scale initiatives, they are often geographically limited, and are often only implemented for the duration of the project. Also, according to the NSPD 2016-2020, the Government of Romania has undertaken to increasing awareness among healthcare professionals of the rights and needs of persons with disabilities by providing relevant training and by promoting ethical standards in medical practice. However, there are no data indicating that such actions were ever taken at the national level in the period between 2014 and 2020. Pedagogical strategies to integrate the principles and skills needed to provide BOX 45 care to persons with disabilities into healthcare education 1. Organize courses with trainers who are persons with disabilities. 2. Organize workshops/conferences/seminars and invite representatives of persons with disabilities and people who advocate for the rights of persons with disabilities. 3. Organize clinical practice sessions in care facilities for persons with disabilities (such as residential centers). 4. Carry out exercises to simulate disability in which medical students are invited to use certain assistive devices and technologies. 5. Organize interdisciplinary learning opportunities both during initial and continuous training (for example, involving medical personnel in joint learning opportunities with social workers, speech therapists, and psychologists). Source: Shakespeare and Kleine (2013). There are no mechanisms to monitor the compliance of healthcare facilities with the rights and needs of persons with disabilities. Professions involved in healthcare are governed by deontological codes that include non-discrimination against patients, including those with disabilities, as a core value. However, there are no available data from which to assess whether the rights of patients with disabilities have been observed or not. For example, there is a patient feedback mechanism in public hospitals through which any patient being discharged or their family member may fill in a standard satisfaction questionnaire or may submit an electronic notification about the quality of the services provided and on the integrity of the hospital personnel.612 These data are collected in a centralized system managed by the Ministry of Health,613 and hospitals have the obligation to take actions to remedy any complaints. However, there is no unitary system for implementing this feedback mechanism in all hospitals in the country,614 and the questionnaire does not collect any data on the disability status of the patients. Also, for other categories of healthcare services such as family medicine, specialist outpatient care, integrated medical and social care institutions, or dentistry, the law does not require a similar system for evaluating patient satisfaction. 612 Order no. 146/2015 of the Ministry of Health regulates the implementation of the Patient feedback mechanism in public hospitals in Romania. 613 By Order no. 740/2011, the National Health Insurance House implements the mechanism “Evaluation of the insured person’s satisfaction with the quality of healthcare services provided in the social health insurance system.” According to the methodology, twice a year, all County Health Insurance Houses should collect questionnaires from a convenience sample of 400 insured persons through the contracted providers. As a comparison, in 2019, the Ministry of Health collected about 200 thousand questionnaires from patients of public hospitals. 614 Romanian Health Observatory (2020). 288 Health BOX 46 Perceptions of attitudes of healthcare workers towards persons with disabilities Communication difficulties faced by healthcare personnel in interactions with patients with disabilities “[...] if the woman enters the practice, the doctor […] uses some medical terminology, the woman says ‘Yes, yes, yes, I understand.’ And she leaves, but she didn’t understand a thing because she was ashamed to ask.” (Community nurse, rural area, Buzău county) “He [the patient] needs to understand from the very beginning that you are doing no harm. Nurses, especially, are associated with the syringe, with the needle, and they are under a lot of stress from the start. On the nurse’s side, everything needs to be explained, [but] when they have to spend [that extra] time with a patient, it’s clear that their activities start to run late. So they don’t spend more time because they have no time and also because sometimes they don’t know precisely how to manage the patient in that category.” (Healthcare manager, county hospital) Lack of patient feedback mechanisms for some categories of healthcare services “It should be the same for doctors as in pharmacies, [they should ask] ‘Are you satisfied with our services?’ [I would answer] No. Always, no [laughs]. With my doctor, if she didn’t have her coffee, I might not even want to enter her office.” (Mother of a young girl with Down syndrome, Buzău county) Source: World Bank qualitative research, February-May 2020) Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA), together with the Ministry of Health and representatives of persons with disabilities, to develop a guide that formulates: (i) a set of key principles and skills to that should govern how healthcare personnel interact with patients with disabilities and (ii) recommendations of good pedagogical practices for integrating the formulated principles and skills into initial and continuous medical education. The document should be distributed to providers of initial and continuous medical education. The NARPDCA should monitor periodically (annually or bi-annually) whether the recommended practices are being implemented by providers. 2 The National Authority of Quality Management in Health (NAQMH) to include among the accreditation criteria for hospitals and outpatient care facilities the requirement that they provide their personnel with training on the rights and needs of patients with disabilities when they are first employed and then again at least once every five years.615 3 The bodies regulating the medical professions (physicians, nurses, and others) and non-medical professions (social workers, psychologists, speech therapists, and others) involved in providing care for persons with disabilities in healthcare facilities to: (i) require each professional to take training sessions on the rights and specific needs of patients with disabilities, once every five years and (ii) reward those training courses that address the rights and special needs of patients with disabilities by, for example, using a points or credit system. 615 Pursuant to Decision no. 12/2018 of the Romanian College of Physicians regulating the national CME system, the criteria and rules for the accreditation of CME providers, and the assessment and credit points system for the CME activities for physicians, the minimum number of credit CMT points that a physician must obtain for a regular professional evaluation is 200 within five years. 289 Health 4 The National Health Insurance House (NHIH) to amend the patient satisfaction form by inserting a field that makes it possible to identify patients with disabilities and to publish the level of patient satisfaction disaggregated by disability. 5 The Ministry of Health to adapt the patient feedback mechanism used in hospitals to the needs of persons with disabilities and to extend it to all categories of providers who claim reimbursements from public funds for the delivery of medical services. 290 8. Social participation 8. Social participation Ovidiu Ovidiu had an accident sixteen years ago when he went wood cutting in the forest—a tree fell over his leg. The doctors told him that the only option was to have his leg amputated. “It’s over now, but I was in great pain. I had a bad depression. I used to work from morning to evening. It is hard on you when you crash suddenly. I went to a psychiatrist for seven years, these thoughts would pop up, as if someone was putting them in my head. Sometimes I would stay in the hospital for sixteen days. My family, friends helped me a lot; the whole village supported me. From 2010, I started working with a foundation and started playing sports. I didn’t want to go to camp with them the first time. I was afraid. But I went nevertheless and I felt a change. I met new people and ever since I’ve been telling persons with disabilities whom I meet to try and go out, not to isolate themselves. Thanks to sports, I saw things, places, I went to Bucharest, to the sea side.” Ovidiu plays several sports, but he likes basketball the most. Social participation 8 Social participation IN SHORT What are the rights of persons with disabilities? Persons with disabilities should be able to participate in cultural life as both consumers (spectators, visitors, and readers) and creators (of cultural activities, events, or products). Persons with disabilities should also be able to participate in sporting activities both inside and outside of schools and in both professional and amateur competitions. TAT VO No restrictions should be put on their right to vote or their right to run for election. Persons with disabilities should be able to participate in the life of the society and communities in which they live, including as members of organizations. What are the main problems related to social participation in Romania? The analysis of the situation in Romania has revealed four main problems: 1 Limited access to cultural life Some persons with disabilities encounter obstacles to participating in cultural life. 2 Limited access to sporting, recreational, and tourism activities Some persons with disabilities encounter obstacles to participating in sporting, recreational, and tourism activities. 3 Limited access to the electoral process Some persons with disabilities encounter obstacles to exercising their right to vote and are not given the support they need to run for election. 4 Limited participation in public life Some persons with disabilities cannot fully participate in the communities and the society in which they live. 292 Social participation 8 Social participation Persons with disabilities need to be able to actively participate as full and equal members of society. In this chapter, four dimensions of participation are discussed. First, cultural life needs to include the experiences of persons with disabilities, who should have access to and be encouraged to participate in cultural events and products both as consumers and as producers. Second, persons with disabilities need to be able to participate in sporting activities in or outside schools, to be professional or amateur athletes or spectators, to have access to recreational and tourism facilities and services to the same extent as the rest of the population. Third, persons with disabilities need to be encouraged to vote and run for public office and not face barriers in these respects. Fourth, persons with disabilities should have the same opportunities to participate in public life as the general population, both individually and via organizations or other forms of association. The main problems discussed in this chapter are: 1. The limited access of persons with disabilities to cultural activities. 2. The limited access of persons with disabilities to sporting, recreational, and tourism activities. 3. The limited access of persons with disabilities to the election process. 4. The limited participation of persons with disabilities in public life. 293 Social participation 8.1 8.1 Limited access Limited to cultural access lifeactivities to cultural IN SHORT What are the rights of persons with disabilities? Cultural activities and products can be of various types: books, movies, theater plays, dance performances, concerts, museums, and many others. Persons with disabilities should be able to be spectators and consumers of cultural activities and products on an equal basis with the general population. They should also be able to access training to become creators of cultural activities or products. Moreover, it is crucial that some of these cultural events and products should also encompass and reflect the interests and experiences of persons with disabilities. What is the situation in Romania? According to the national survey of persons with and without disabilities conducted in 2020 for this report, persons with disabilities participate less often in cultural activities as spectators or visitors of historical monuments. Persons living in rural areas participate less than those in urban areas, whether they have disabilities or not. The percentage of persons with severe Without disabilities 63% disabilities that didn’t participate at all in cultural With some disabilities 79% activities as spectators or consumers in the previous year: With severe disabilities 89% The percentage of Without disabilities 57% persons who didn’t visit any historical monument or archeological site With some disabilities 72% (such as a palace, castle, church, or monastery): With severe disabilities 83% 294 Social participation According to accounts from persons working in the cultural field, persons with disabilities rarely reach the position of becoming creators of culture compared to persons without disabilities. Many cultural activities or products are not made accessible to persons with disabilities. For example, few theater plays are performed in sign language or are subtitled for persons with hearing disabilities. Also, cultural activities and products rarely reflect the lived experiences of persons with disabilities. What are the causes of this problem? Culture and access to culture for persons with disabilities are not high priorities on the policy agenda, and there is no dedicated funding for cultural products focused on themes regarding the specific life experiences of persons with disabilities. Cultural institutions are not physically 5/127 2/199 accessible. In a survey carried out by the National Institute for Cultural Research and Training, only five performance spaces out of a total of 127 and only two museums/libraries out of a total of 199 complied with all legal accessibility accesible accesible standards. performance spaces museums/libraries The independent cultural sector, as opposed to the public arts sector or large private cultural producers, is more active in promoting cultural offerings that are socially inclusive, but the sector lacks both funding and other resources such as spaces and equipment. There are no national formal training programs to support persons with disabilities to become creators of culture. What are the key changes that need to be made? Educational facilities and the curriculum for training creators of culture must be accessible to persons with disabilities. Regular assessments of cultural and art institutions must be made at least every three years to ascertain if they are accessible to persons with disabilities. The government must provide funds to train and hire interpreters for persons with hearing and visual disabilities in cultural institutions. The government must provide competition-based funding for cultural projects that are thematically related to disability. 295 Social participation 8.1 Limited access to cultural activities Culture616 can help to combat discrimination and raise awareness on the rights,617 problems, and needs of persons with disabilities. Creative, educational, and artistic products can influence social norms and how people live. Theater performances, movies, works of art, and literary creations can raise the visibility of persons with disabilities and their disability-related problems and needs, while making the public aware of the barriers they have to face every day.618 Presently, cultural factors act more like obstacles to the full realization of the rights of persons with disabilities, blocking, for example, compliance with anti-discrimination laws.619 Persons with disabilities can be both creators and consumers of cultural events and products, which can include topics inspired by their lives. We believe that it is very important to address the issues concerning the participation of persons with disabilities in cultural life across all of these dimensions.620 Description of the problem Persons with disabilities participate in cultural activities in smaller numbers and less frequently than persons without disabilities. This difference exists in the context of declining cultural consumption among Romania’s overall population. Thus, while the proportion of the general population who consume cultural events on a weekly or monthly basis is no more than a few percentage points on average,621 the percentage of persons with disabilities is much lower. Such differences become more evident over longer periods of time. According to the World Bank survey of persons with and without disabilities, no fewer than 89 percent of persons with severe disabilities said that they had never participated in cultural activities during the previous year compared with 79 percent of persons with some disabilities and 63 percent of persons without disabilities.622 Cultural consumption is significantly lower in the rural environment than in urban areas. Thus, 93 percent of persons with severe disabilities (9 percentage points higher than in urban areas), 88 percent of persons with some disabilities (20 percentage points higher than in urban areas), and 73 percent of persons without disabilities (23 percentage points higher than in urban areas) had had no access to cultural activities in the previous year. Cultural consumption decreases with age and increases significantly with educational attainment in all of the groups disaggregated by level of disabilities in daily activities. Women have a lower level of cultural consumption than men. 616 The CRPD describes culture from two perspectives: (i) in a broad sense, as knowledge systems, symbolic representations, lifestyles, values, norms, traditions, and beliefs when it refers to “cultural and linguistic identity, including sign languages and deaf culture” (Art. 30 para. (4)) and (ii) in a narrow sense, as creative and educational culture, humanities, and arts, for which the CRPD provides standards in order to fulfill the rights of persons with disabilities (Art. 30 para. (1)-(3)). Definitions from online dictionaries make a clear distinction between the two perspectives of the word: https://www.merriam-webster.com/dictionary/ culture; https://dictionary.cambridge.org/dictionary/english/culture. This section mainly discusses the characteristics of the narrower definition of culture, namely that of creative culture and art. The analysis touches on the perspective of culture in a broad sense in order to illustrate the links between the two, as well as the consequences for the lives of persons with disabilities. Certain definitions make an explicit connection between the two senses of the word: “Culture should be regarded as the set of distinctive spiritual, material, intellectual, and emotional features of society or a social group, and that it encompasses, in addition to art and literature, lifestyles, ways of living together, value systems, traditions, and beliefs” according to UNESCO (2011). 617 Thus, it also affects the implementation of Art. 5 and 8 of the CRPD. 618 According to research, an artistic approach that focuses on disability, which has now become such an important and topical issue on the agenda of welfare states, can create artistic products that are more authentic and more representative of contemporary societies. 619 Yazbeck et al. (2004). 620 The key topics that will be addressed regarding the limited access of persons with disabilities to culture are based on Art. 30 of the CRPD. 621 Previous data confirm this low level across the nation. In 2018, between 1 and 4 percent of the adult population interviewed in a nationally representative survey participated in different cultural activities weekly. By activities, museums reached the smallest number, while the highest number of people attended cultural events (Croitoru and Becuț, 2018). 622 According to the World Bank survey of persons with and without disabilities. These estimates may have been affected by the Covid-19 state of emergency, which reduced access to cultural events. 296 Social participation FIGURE 39 Proportion Tabelul people care of populației 39: Procentul who participated a participat cultural in culturale la activități activities în anul anterior, înin funcție previous the de dizabilități year by degree of disability 1% 3% 4% Persons without disabilities 19% 9% 3% 64% 2% 2 % Persons with some disabilities 10% 4% 81% 1 2 % % 3% Persons 4% 90% with severe disabilities At least once a week Twice or three times a month Once a month A few times a year Once Never Source: World Bank survey of persons with and without disabilities (2020). There is little information on the participation of persons with disabilities in certain types of cultural events or their consumption of specific cultural products. The fragmented information that does exist confirms their low participation rates and the gap between persons with disabilities and those without disabilities. In the previous year, 76 percent of persons with disabilities had not visited any historic monuments or archeological sites (such as a palace, a castle, a church, a monastery, gardens, or ancient buildings) compared with 57 percent of persons without disabilities. One explanation is the limited access to cultural institutions, which will be discussed further below. There are not enough data to gain a comprehensive picture of the creative involvement in cultural activities of persons with disabilities. However, the qualitative research and other disparate evidence indicate that it is probably low. According to the qualitative research carried out for this report, the same structural factors that restrict consumption among persons with disabilities (as discussed below) also act as obstacles to their professional fulfillment as creators of culture. The persons with disabilities interviewed for this report believed that the presence of persons with disabilities in the public space as creators of culture and art is reported by the media more as an exception when it should be the rule. The CRPD emphasizes that “persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture.” In Romania, a first step was taken in that direction with the adoption of GEO no. 51/2017, which officially recognizes sign language and the languages specific to persons with deafblindness as a means of communication. Nevertheless, more steps need to be taken to ensure that the linguistic identity of persons with disabilities is respected and observed, from organizing sign-language-based school exams to theater plays performed in sign language. The teaching of these languages should be embedded in the education system. 297 Social participation Explanation of the problem Priority given to culture in public policies Romania’s cultural sector is underdeveloped, and no specific mechanisms are in place for funding disability-relevant cultural products. In 2017, 18,059 enterprises were active in the cultural sector across Romania, representing 1.6 percent of all cultural enterprises in the EU-27, which is lower than the 4.4 percent that the population of Romania accounted for in the overall EU-27 population. One of the main sources of funding for cultural projects in Romania, particularly for the independent cultural sector,623 is the Administration of the National Cultural Fund (ANCF). However, the Fund has to split its limited resources among 12 funding areas. For example, of the Fund’s total estimated budget of RON 15 million for the next session,624 only RON 2.3 million will be allocated to “Education through Culture” and “Cultural Intervention,” which has financed disability projects in the past through the priority “promotion of inclusion, diversity, and tolerance.” Cultural infrastructure and services are in short supply across the nation, with major disparities depending on the size of the locality. There are significant differences in cultural infrastructure between urban and rural areas. Only 3 percent of the rural population can identify more than 10 cultural institutions in their municipality, compared with 97 percent of the urban population. Moreover, in urban areas, only eight cities can be considered to be large cultural centers.625 The issue of access to culture for persons with disabilities is almost entirely missing from the agenda of the local authorities in the areas where the qualitative research was conducted. The interviews carried out for this diagnosis report with decision-makers in mayoralties and local or county councils highlighted the lack of specific measures meant to increase access to culture for persons with disabilities. According to the interviews conducted with practitioners in the cultural field, the majority of cultural events that are aimed at including persons with disabilities are organized by independent cultural entities that have no affiliation with public cultural producers or big established producers from the private sector. Fewer cultural services are available to persons with disabilities near to where they live than are available to the general population. The interviews carried out for this report with the representatives of the local authorities and NGOs suggest that only in large cultural centers like Sibiu, Cluj-Napoca, or Bucharest do some producers consider the potential attendance of persons with disabilities at cultural happenings while planning cultural events. Also, this is allowed by the fact that infrastructure is accessible to a higher degree in such large cities. For certain persons with disabilities, such as those with visual or locomotor disabilities, if cultural services and products are not available near to where they live, it can be considerably more difficult for them than for the general population to travel further afield to access such events. 623 This includes organizations and professionals that work independently of public cultural institutions (such as nongovernmental cultural organizations, artists, and cultural managers). 624 Session 1 of 2021; funds are allocated twice a year. 625 According to the National Culture and Heritage Strategy 2016-2022. 298 Social participation Accessibility of cultural institutions and stages A nationwide thematic inspection of cultural facilities conducted by NAPSI in 2019 highlighted numerous challenges related to their accessibility to persons with disabilities. At the request of the NARPDCA, NAPSI evaluated 127 performance spaces and 199 museums and libraries, which are all located in urban areas and most of which are publicly managed (only 14 performance spaces were privately managed). Only five performance spaces and two museums/libraries met all of the accessibility criteria stipulated by law. The data collected by NAPSI suggest that the cultural facilities had a low level of accessibility in most of the aspects that are essential for persons with disabilities.626 Some of the most common accessibility issues were a lack of accessible restrooms (69 percent of performance spaces and 77 percent of museums and libraries) and a lack of seats reserved for persons with disabilities (61 percent of performance spaces, museums, and libraries). Ramps were missing in 18 percent of the performance spaces that would need them for persons in wheelchairs to be able to access the buildings, while 39 percent of them were not equipped with adequate ramps. The situation was even worse in museums and libraries: 39 percent did not have any ramps at all, and 26 percent did not have adequate ramps. Also, 87 percent of museums and libraries had no sign language interpreter. These accessibility problems are confirmed by the findings of the survey conducted in 2020 by the National Institute for Cultural Research and Training (NICRT). The research used the same set of questions on accessibility issues as the one conducted by NAPSI, which was designed together with the World Bank team, as well as additional questions related to the concessions granted to persons with disabilities to enable them to attend cultural events and the training provided to the staff of the cultural institutions on working with persons with disabilities.627 The survey indicates that none of the museums and public collections is completely physically accessible, while only 1 percent of them are accessible from an informational point of view and 10 percent from a communications point of view. Ninety-six percent of the museums and public collections do not have accessible restrooms, 91 percent do not have an accessible entrance, and 87 percent do not have accessible corridors. Monuments, botanical and zoological gardens, aquariums, nature reserves, and museums of science and technology are accessible in larger proportions than art galleries and museums of archeology and history, natural science and history, ethnography and anthropology, and other specialized museums. Only one of the participating institutions and production companies for performances and concerts is physically, informationally, and communicationally accessible. The majority of museums and public collections give free tickets to persons with disabilities (87 percent), while 12 percent of them give them discounted tickets. Twenty-seven percent of these entities have other types of concessions for persons with disabilities. With only one exception, all institutions and production companies for performances and concerts provide concessions, mainly free tickets. The staff of cultural institutions are not properly trained to interact with persons with disabilities. The NICRT survey findings show that only 8 percent of museums have specialized staff who are trained in the field of human rights for persons with disabilities. Only 4 out of 55 institutions and production companies for performances and concerts have at least one employee trained in the field of human rights for 626 NAPSI (2020). 627 Answers were collected from 214 museums and public collections and from 55 institutions and production companies for performances and concerts. Almost all institutions are publicly administrated (only three private museums and public collections were interviewed). Most of the institutions are located in urban areas: 163 museums and public collections and all of the institutions and production companies for performances and concerts. 299 Social participation persons with disabilities. Data from the qualitative research show that neither the cultural events put on by these entities nor the cultural products that they exhibit are accessible. For example, there are very few museums that ensure that their content is displayed in an accessible way or that there is an accessible trajectory through their space for persons with different types of disabilities. The offering of disability-related cultural events and products The experiences of persons with disabilities are insufficiently reflected in the cultural products available on the cultural market. Culture is inclusive not only by having an equitable geographical spread or by the extent to which it is accessible but also by ensuring that its content reflects a wide range of human experience, including the experiences of persons with disabilities. According to the experts in the field interviewed for this report, this inclusiveness of content is rare. They gave two explanations for this: (i) there is no public strategy for raising the awareness of the general population of the issues related to disability and of the need for social inclusion to support the realization of the rights of persons with disabilities and (ii) persons with disabilities are not encouraged to produce art themselves so this hinders the production of self-reflective cultural products revolving around disability issues. The independent cultural sector is perceived as being more active than the public cultural sector in promoting a disability-inclusive culture, but it does not receive much financial or logistical support. Some persons interviewed as part of the qualitative research carried out for this report thought that the independent sector is more involved than the public sector in developing new, diverse, and thematically accurate cultural products focused on disability issues. Because of this, this sector should be given much more support from public resources than the minimal aid that it gets today, with dedicated financial resources and infrastructure (such as venues and equipment). 300 Social participation BOX 47 Barriers preventing persons with disabilities from accessing cultural events and products “It is very frustrating to choose the places you go to not based on what you like, but based on what is accessible.” (Person with physical disabilities, Prahova county) “Some beneficiaries of the Foundation tried to see a movie at a shopping center movie theater in Piatra Neamț, but they were told that only 10 free tickets were given away to persons with disabilities each month. So they went back on the 1st of the following month for the first screening, and they were once again told that they had run out of free tickets.” (Person with physical disabilities, NGO representative, Neamț county) “I wanted to go to the cinema. They have places reserved for persons with disabilities, but guess what? They do not use them! The lady in the ticket booth looked at me and said: ‘We have an elevator.’ But you know... When they look at you like that, you as a person with disabilities do not feel like going there anymore. Then you say: ‘OK, got it, do not bother.’ I gave up.” (Person with physical disabilities, Arad county) “The theater hall is on the first floor and there are several flights of stairs. There is no elevator or ramp, and the persons in a wheelchair had to be carried upstairs.” (Representative of a disability organization, Sibiu county) “The parent of a child with disabilities, who does not get much therapeutic and medical support for their child, will spend their money primarily on that support, and access to culture and sports will come second. But if the state got involved in a more proactive manner, then cultural and sporting aspects could also be addressed.” (Representative of a disability organization, Teleorman county) Source: World Bank qualitative research (February-May 2020). Support for persons with disabilities as producers of culture Persons with disabilities looking to become creators of culture or to play other roles in the cultural industries are not adequately supported by national or local programs. Producers of culture who have disabilities can be supported by creating adapted educational and adult training pathways in the field and by sustaining their future work in the cultural industry. Cultural training may be provided under the formal training system or via informal programs that develop practical skills without the standardized certification that is officially recognized on the labor market. As regards formal cultural training, the main problems are attracting students with disabilities to humanities and artistic vocational schools and ensuring the accessibility of those educational establishments. Vocational education as currently organized promotes excellence and achievement, which are not perceived as characteristics of persons with disabilities, according to the qualitative research. Making those educational establishments (for example, schools of plastic arts) accessible will require other adaptations than those needed for theoretical schools. At present, there are no systematic initiatives that examine the options available for developing vocational education into a disability-inclusive field. Recommended measures The following measures are recommended: 1 The Ministry of Education to coordinate a program aimed at making vocational artistic education accessible to persons with disabilities taking into account the specific needs of each artistic and cultural profession and situations of disability. 2 The National Agency for Payments and Social Inspection (NAPSI) to continue to carry out inspection campaigns on a regular basis to assess the accessibility of cultural and artistic service providers, including libraries. 301 Social participation 3 The Ministry of Culture to ensure sign language interpretation services within cultural institutions as well as training programs for their personnel on how to interact with persons with other types of disabilities. 4 The Ministry of Culture to organize cultural events that are thematically related to disability at least annually and/or on dedicated days. 5 The Ministry of Culture to make a map of physically, informationally, and communicationally accessible cultural institutions with the support of the National Institute for Cultural Research and Training and to publish it online. 6 The Ministry of Culture through the Administration of the National Cultural Fund (ANCF) and with the support of the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to finance artistic projects related to disability issues based on calls for proposals. 7 The NARPDCA to promote inclusive cultural events on its own website and on its social media pages. 302 Social participation 8.2 8.2 Limited access Limited to sporting, access recreational, to sporting, and recreational,SH IN ORT and tourism activities tourism activities What are the rights of persons with disabilities? From the youngest age, children with disabilities should be able to play with children without disabilities and play sports adapted to their needs. Persons with disabilities should be able to regularly access opportunities to play sports and participate in other recreational and tourism activities. For some disabilities, sporting is not just a right but also can be an essential part of a person’s rehabilitation and can prevent specific complications related to certain disabilities. What is the situation in Romania? In the 12 months preceding the survey carried out for this report in July-September 2020: Had not walked in a park 58% Persons with VS 26% Persons without or other green area disabilities disabilities Had not participated in a 88% Persons with VS 67% Persons without sporting activity disabilities disabilities Had not attended a 91% Persons with VS 79% Persons without sporting competition disabilities disabilities 303 Social participation Had not stayed in a hotel, B&B, or other form of 85% Persons with VS 64% Persons without accommodation disabilities disabilities Had not spent a weekend away from home 77% Persons with VS 48% Persons without disabilities disabilities What are the causes of this problem? Sports and tourism policy planning does not consider the needs and the rights of persons with disabilities. There are no laws and institutions to regulate the participation of persons with disabilities in sporting activities in schools or amateur sports clubs. Public playgrounds do not generally include equipment that is accessible to children with disabilities. An analysis of public procurement of new playground equipment in Romania has shown that, overall, even the new equipment recently purchased by local authorities does not consider the needs of children with disabilities. Of the 2,616 playground equipment tenders in 2019, only 29 were related to accessible equipment for children with disabilities. The costs of participating in sporting activities are generally high, and for persons with disabilities they can be even higher if they need special equipment. There are no government programs to cover even a part of these costs. Tourist operators do not face any sanctions if they fail to offer accessible services or if they deny them altogether to persons with disabilities. What are the key changes that need to be made? Some playground equipment must be specially designed for use by children with disabilities. Sports federations and clubs must organize amateur sports activities for persons with disabilities. Physical education classes in mainstream schools must include children with disabilities, in ways adapted to their needs. Sports clubs must be accessible to persons with disabilities and supply them with the equipment needed to provide physical training to persons with disabilities. 304 Social participation 8.2 Limited access to sporting, recreational, and tourism activities Participation in sporting, tourism, and leisure activities628 yields multifaceted benefits for persons with disabilities in three distinct areas: (i) it offers them a better chance at a healthy life in both physical and psychological terms; (ii) it contributes to their personal development with cognitive benefits such as increased self-confidence; and (iii) it enhances their social integration.629 From the youngest age, children with disabilities should be able to play with children without disabilities on the same playgrounds as well as to play sports adapted to their type of disability so that they can develop harmoniously and improve their health. As for adults, sports and tourism should be an accessible part of their lifestyle. Sporting activities can also have a rehabilitative dimension for certain disabilities. Description of the problem Persons with disabilities participate in sporting, tourism, or recreational activities to a much lesser extent than those without disabilities. If almost 67 percent of Has taken walks in the park, green areas Has been involved in a sporting activity persons without disabilities did never engage in sporting activities in the last year, the 26% 67% percentage rises to 84 percent of persons with some disabilities and to 94 percent of persons with severe disabilities. 53% 630 84 percent never spent the weekend out 84 % town of in the last year, compared to almost half of persons without disabilities. Participation rates in activities are lower for 66% women, with major differences between women 94 with % disabilities and those without disabilities. Compared with Has been to 48 percent of women without a restaurant/bar/coffee Has attended sports competitions shop/club/terrace disabilities, 73 percent of those with some disabilities and 88 percent of those with 79% 44% severe disabilities had never been to a restaurant, bar, coffee shop, club, or terrace in the previous year. 89% 67% 93% 84% Percentage of people who never participated in sporting, tourism, or FIGURE 40 recreational Has been on a tripactivities inpersons organized for the previous with year, Has by degree been of disability on a trip other than trips organized disabilities exclusively for persons with disabilities Has taken walks in the park, green areas Has been involved in a sporting activity 95 % 80% 26% 67% 95% 88% 53% 84% 95% 93% % 66% 94 Has stayed in a hotel, boarding house, or other been to Has spent Has restaurant/bar/coffee a weekend the out of town Has attended sports accommodation competitions facility shop/club/terrace 64% 79% 44 % 48% 82%89 6772 % % % 93 90 % % 84% 84 % been onwithout HasPersons a trip organized for persons disabilities with with some Persons Has been on a trip other disabilities trips severe than with Persons organized disabilities disabilities exclusively for persons with disabilities 95% 80% 95% 88% 628 95access The key topics that will be addressed regarding the limited % of persons with disabilities to sports, tourism, and recreational 93% activities are based on Art. 30 of the CRPD. 629 Ecorys (2018). 630 Has stayed in a hotel, boarding house, or other Has spent These percentages may have been influenced by the COVID-19 state of the weekend emergency, out has which of town restricted the freedom of accommodation facility movement of all citizens. 64% 48% 305 82% 72% 90% 84% Has attended sports competitions shop/club/terrace 79% 44% 89% 67% Social participation 93% 84% Has been on a trip organized for persons with Has been on a trip other than trips organized disabilities exclusively for persons with disabilities 95% 80% 95% 88% 95% 93% Has stayed in a hotel, boarding house, or other Has spent the weekend out of town accommodation facility 64% 48% 82% 72% 90% 84% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). Earlier data from 2014 and 2016 confirm that exercising is an uncommon practice in Romania, and rates are even lower among persons with disabilities.631 Eurostat data for the year 2014 indicated that, in a typical week, 84 percent of Romanians did not perform any physical activity other than what was required for work. This was the lowest rate in all EU countries, far behind the EU-28 mean, which was 49 percent that year. Data from the Ministry of Youth and Sport (MYS) for 2016 confirmed that 60 percent of the population did not do any kind of sport in that year, with persons with disabilities having even lower participation rates. Because of the one-dimensional medical approach taken to disability in Romania, any participation by persons with disabilities in sporting activities tends to be for physical rehabilitation, although even those services are scarce. The information collected during the interviews revealed that persons with disabilities have extremely limited sporting opportunities, and these few are largely the result of individual efforts or private initiatives. Barriers preventing persons with disabilities from participating in sport BOX 48 “As a person with disabilities, when I go to the pool, I try to figure out how I can get into the pool without bothering anyone, without having all eyes on me, without anyone coming up to me and saying they want to help me because I do not like those things. I’ve been like that my entire life. I think for a while, I choose a lounger that is very close to the pool and then I start getting out of the wheelchair, I first transfer onto the chair [lounger], from the chair [lounger] straight into the pool. I am not paralyzed [...]. When you go to the pool with your kids, there are always curious people staring at you and so you try to make sure the kids do not feel awkward; you ask them to stand close to you so that you can get into the pool.” (Person with physical disabilities, Arad county) “We should raise a generation of children that is (re)interested in organized sports. Setting up ping pong tables is not enough; coaches should be supported as mentors for children. The American example of gym teachers who act like mentors is well known. Sport is an aggregator for discipline, innovation, courage, but the municipality is not at all concerned with that as far as we can see.” (Private sports and recreation operator, Sibiu county) Source: World Bank qualitative research (February-May 2020). 631 Eurostat indicator [hlth_ehis_pe2e]: http://appsso.eurostat.ec.europa.eu/nui/submitViewTableAction.do and Ministry of Youth and Sports (2016). 306 Social participation In Romania, persons with disabilities, and in particular those with severe disabilities, are less able to afford a vacation than persons without disabilities. Also, persons with disabilities feel less satisfaction with their leisure time. According to the World Bank survey of persons with and without disabilities, the majority of persons with disabilities, both with some disabilities (83 percent) and with severe disabilities (90 percent), said that they had not gone on vacation for at least one week in the previous year, compared with 67 percent of persons without disabilities. According to EU-SILC data, in 2018, the average score of persons with severe disabilities regarding their satisfaction with their leisure time was 5 on a scale of 1 to 10, with 10 representing the maximum level of satisfaction, which was one point lower than in 2013. With that score, Romania was one of the four lowest ranking states in the EU (along with Bulgaria and Greece, with a score of 4, and Lithuania with the same score as Romania). The average score of both persons with some disabilities and persons without disabilities in Romania was 7. Explanation of the problem Inclusiveness of relevant policies Sport and tourism policy planning does not consider the needs of persons with disabilities. Both the National Youth Strategy 2015-2020 and Romania’s National Tourism Master Plan 2007-2026 include brief references to disability issues but fail to set any specific objectives. The National Youth Strategy mentions the provision of “adequate conditions to ensure access, including in properly equipped youth centers and student centers.” As for tourism, no objectives have been set for persons with disabilities, and the only mention of them in the Master Plan is that “the limited access of persons with disabilities to numerous hotels and tourist attraction sites” sets back the development of Romanian tourism. According to the results of the qualitative research, public administration representatives do not perceive sport to be a necessity or a right of persons with disabilities. Sports facilities, in particular public ones, are considered to be accessible – as long as they are “at ground level” – exclusively to persons with motor disabilities who want to access them as spectators during sporting events. Provision of legislative conditions for realizing the right of persons with disabilities to participate in sports Legislation in the field of sports and the rules governing the organization and operations of relevant federations fail to ensure the participation of persons with disabilities in mainstream sporting activities in schools or amateur sports clubs. The Rules Governing the Organization and Operations632 of the School and University Sports Federation633 do not include any specific responsibilities for adapting the sporting infrastructure and activities of mainstream schools to accommodate students with disabilities, to carry out sporting activities in special schools, or to support the creation of sports clubs for students with disabilities. GD no. 15/1992 on the organization and operation of the MYS provided for the establishment of the National Sports Federation “Sports for All” and the Romanian National Paralympic Committee. The latter is the 632 Rules Governing the Organization and Operations of the School and University Sports Federation as of November 30, 2011. 633 Sporting activities carried out in educational establishments are regulated by the School and University Sports Federation under Art. 6 of Law no. 69/2000 on physical education and sports. 307 Social participation only body devoted to persons with disabilities, but it covers only professional sports and not amateur sports.634 An MYS survey that gathered responses from sports facilities from 16 counties in 2020 showed that the public ones do not recruit persons with disabilities, and their participation in privately managed sports facilities is also low. Only about 10 percent of the 250 private sports facilities (out of the 360 public and private facilities available in the 16 counties) included any professional athletes with disabilities. None of the 97 school sports facilities had any persons with disabilities among their registered members, and only one of the 13 sports facilities managed by local or county councils had seven amateur athletes with disabilities as registered members. Inclusion of athletes with disabilities in sports facilities in 16 counties TABLE 12 Number Private sports facilities 250 School sports facilities 97 Public sports facilities other than school facilities 13 Private sports facilities that include athletes with disabilities 24 School sports facilities that include athletes with disabilities 0 Public sports facilities, other than school facilities, that include athletes with disabilities 1 Number of athletes with disabilities in private sports facilities 247 Number of athletes with disabilities in school sports facilities 0 Number of athletes with disabilities in public sports facilities other than school 7 facilities Source: MYS survey data (2020) compiled by the World Bank team. Note: The survey gathered responses from the following 16 counties: Arad, Brăila, Brașov, Bucharest, Cluj, Covasna, Galați, Harghita, Iași, Ilfov, Mureș, Prahova, Săla j, Teleorman, Timiș, and Vâlcea. Accessibility of playgrounds for children with disabilities In general, public playgrounds lack accessible equipment, and their development plans do not include the purchase of such equipment. An analysis of data from the Public Procurement Electronic System (PPES) carried out for this report shows that 34 of the 40 tender announcements published in 2019 for the purchase of playground equipment did not include any specifications for the bids to include adaptive equipment for children with disabilities (Table 13). There was an explicit request for the equipment to be accessible for children with disabilities for only about 1 percent of all of the equipment required. The analysis of the PPES data by area of residence and size of the urban municipality, including the capital city of Romania, indicates that this is a general trend for all of these types of municipalities. 634 Although, under Law no. 448/2006, Art. 6 let. f), Art. 9 let. g), Art. 19 let. f), Art. 21 para. (1) and (2), the state ought to support the participation in sport of persons with disabilities. 308 Social participation TABLE 13 Tender announcements for the purchase of playground equipment with specifications related to accessible equipment and equipment that met such specifications, 2019 Type of Area of contracting Total residence authority Public Private Urban Rural Number of announcements for the purchase of 40 40 0 28 12 equipment Number of announcements that specify equipment 6 6 0 6 0 for children with disabilities Number of equipment items 2,616 2,616 0 2,278 338 Number of equipment items for children with 29 29 0 29 0 disabilities Percentage of equipment for children with disabilities 1 1 0 1 0 in total Source: Consolidated PPES data compiled by the World Bank team. Coverage of the costs of sport participation for persons with disabilities, including children The costs of participating in sporting activities are often prohibitive and include both travel expenses and equipment costs, and no public funding mechanisms exist to cover them. Adapted sports for persons with disabilities often require not only the assistive devices and technologies that persons with disabilities need in other dimensions of life, like independent living or employment, but also equipment that is specific to those physical activities (for example, beeper balls or tandem bicycles), which involve additional costs that many of these persons cannot afford. Good practice policy models from across the European Union that promote access to sports for persons with disabilities tend to center on local and private initiatives, although these initiatives are supported by state-funded programs (see Box 49). There are many types of sports that persons with disabilities can play, including some newly developed ones. Good practice policies from European states that promote access to sports BOX 49 for persons with disabilities Belgium: The Physical Education and Sport Administration provides funding for the purchase of equipment, participation in sports camps, and the setting up of sports clubs for persons with disabilities. Ireland: Sport Ireland (a government agency) funds programs for sports organizations and persons with disabilities. The agency offers resources, ideas, and support for their implementation, including via Sports Inclusion Disability Officers. France: The National Center for Sport Development (under the Ministry of Sports) coordinates three key programs: (i) a program encouraging mainstream sporting activities for persons with disabilities in the run-up to the 2024 Olympic Games; (ii) a program aimed at developing the audio- visual capability of sport associations and at funding audio-visual media productions; and (iii) a program funding the employment of disability and adapted sport specialists in sports federations. Nationwide, 2,481 clubs are accessible to persons with disabilities, either for dedicated sports or for adapted sports, with a total of 92 thousand registered members with disabilities. 309 Social participation United Kingdom: The National Sports Participation Agency develops programs that support persons with disabilities who already play sport and that engage inactive people in sport. To that end, it provides support to organizations like Activity Alliance, which promotes sporting opportunities for persons with disabilities at the local level by collaborating with small organizations. It also conducts publicity campaigns. The Netherlands: The Ministry of Health, Welfare, and Sport provides direct funding to specific programs targeted to persons with disabilities in order to make sports facilities accessible, while also subsidizing the costs of the participation of persons with disabilities in their activities. The Transport Authority reimburses the travel expenses of athletes with disabilities who play for clubs affiliated with relevant federations. Two parasport research programs are also being implemented. Source: Ecorys (2018). Training of sports facility staff in how to interact with persons with disabilities Schools and sports clubs lack personnel who specialize in working with persons with disabilities among their teachers, trainers, coaches, or support staff. Even if sports infrastructure and equipment were made accessible, they cannot have the desired effects unless paired with the recruitment and training of personnel so that they are qualified to provide support to persons with disabilities. Incentives to provide tourism activities for persons with disabilities Tourism services aimed at persons with disabilities are underdeveloped. Romania has a small number of tourism entities that indicate the services and travel opportunities that they provide to persons with disabilities. However, the logistical difficulties that persons with disabilities experience when traveling long distances are enormous, given that there is frequently a lack of continuously accessible routes even within the same locality.635 If they manage to overcome these logistical difficulties, persons with disabilities have to pay additional costs, for example, for a companion. The participation of persons with disabilities in tourism activities can be increased by sanctioning those tourism entities that fail to offer accessible services and by providing financial support to the persons with disabilities themselves. Recommended measures The following measures are recommended: 1 The Ministry of Youth and Sports (MYS) to amend Law no. 69/2000 on physical education and sports: (i) to allow the establishment, within each different sports federation, of a sports department for persons with disabilities focusing on amateur sporting activities; (ii) to establish clear obligations for school sports clubs and public or private sports clubs that organize amateur sporting activities to make their structures accessible and to organize, on the basis of an annual calendar, forms of sports training for persons with disabilities; (iii) to ensure that Paralympic athletes benefit from training conditions and programs adapted to the athletes’ types of disability; and (iv) to ensure that the management of funds for Paralympic athletes is assigned to the Sports Department for Persons with Disabilities and is carried out through consensus-based decisions by athletes with disabilities. 635 As highlighted in Chapter 1, “Accessibility and Mobility”, Section 1.3. 310 Social participation 2 The MYS to grant subsidies to sports clubs for enhancing the accessibility of their sports infrastructure and equipment and for training amateur athletes with disabilities. 3 The Ministry of Development, Public Works, and Administration (MDPWA) to prepare a draft law laying down the obligation for each municipality to provide accessible playground equipment for children with disabilities in public parks (up to a certain percentage of the total playground equipment available) and the obligation for tenders to include accessible equipment as a certain percentage of the total equipment (for example, the percentage could mirror the share of children with disabilities in the total child population at the local level). 4 The Ministry of Education and the County School Inspectorates (CSIs) to make sure that gym classes are inclusive of children with disabilities by allocating funding to enable schools to invest in accessible infrastructure and by training gym teachers on topics related to the sports pedagogy and the para-sportive training of the children with disabilities. 5 The Ministry of Economy, Entrepreneurship, and Tourism (MEET) to revoke the operating permits of tourism entities that fail to comply with legal requirements regarding physical, information, and communications accessibility standards. 311 Social participation 8.3 8.3 Limited access Limited to the access electoral to the process electoral process IN SHORT What are the rights of persons with disabilities? The election process means voting to elect the President, representatives in the national Parliament and the European Parliament, mayors, and members of local councils as well as voting in referenda. Persons with disabilities should be able not only to vote in elections but to run for election themselves. What is the situation in Romania? Both the right to vote and the right to run for election are guaranteed by law, yet not all efforts are made in practice to make sure that these rights can actually be exercised. Right to vote With regard to the 2019 presidential elections, according to the survey of people with and without disabilities carried out for this report in 2020, some persons with disabilities (especially those with severe disabilities) encountered difficulties in the voting process. The percentage of persons with disabilities that encountered difficulties in the voting process: Were not able to travel to the polling The polling stations were not stations to vote. physically accessible. 5% 1% 14% 6% The procedures to request a mobile The voting materials were not accessible ballot box were too complex. and the vote was not confidential. 3% 2% 6% With some disabilities With severe disabilities 312 Right to run for election There are no data on the number of persons with disabilities who have been elected to public office, which indicates that not much attention been paid to this topic in Romania so far. According to the accounts of persons with disabilities and other stakeholders, the number of persons with disabilities who have run for election is low. What are the causes of this problem? According to official data, around one-tenth of polling stations are not physically accessible to persons with mobility problems. 1/10 According to the local authorities only 11 percent of rural polling stations are not physically accessible, and persons with disabilities are allowed to vote at any polling station. In rural areas, if the polling station at which the VOTED person with disabilities is officially registered is not accessible, then the nearest accessible polling station may be located quite far away. There is a lack of educational materials that explain the voting process in formats that are accessible to persons with all types of disability. There are no online or offline maps of accessible polling stations by each type of disability. Persons with disabilities say that their problems do not feature enough in the debates between candidates. No special support is provided for persons with disabilities who want to NEWS run for election. What are the key changes that need to be made? It is necessary to make polling stations accessible and to publish maps that indicate the location of the accessible polling stations. Mass-media materials on the election process must be produced and disseminated in formats that are accessible to persons with all types of disabilities. A sufficient number of ballots in accessible formats must be prepared. A mail-in voting system using formats accessible to persons with locomotor and visual disabilities must be implemented. The expenses of candidates with disabilities that are generated by the disability must be reimbursed from the public budget, and the voter threshold required for the reimbursement of expenses generated by disability must be lowered to 1 percent for persons with disabilities (from 3 percent). Social participation 8.3 Limited access to the electoral process The are many barriers that impede persons with disabilities from participating in the electoral process, both as voters and as candidates for election.636 Modern democracies are based on free and fair elections as well as on the recognition of the right of all citizens to vote. For the vast majority of persons with disabilities who are not directly involved in policy development and implementation, voting is the most direct mechanism for exerting their influence. To run for election is also a fundamental right of all citizens. The involvement of persons with disabilities as decision-makers increases the chances that policies will be responsive to the needs of persons with disabilities. The participation of persons with disabilities in political life can contribute to breaking down stereotypes, changing mindsets, and combating discrimination.637 In open and inclusive societies, it is essential to provide persons with disabilities with access to the election process as both voters and candidates. Description of the problem The right to vote is guaranteed by law in Romania, yet a considerable proportion of persons with disabilities do not exercise it. In July 2020, the protection measure depriving persons with intellectual disabilities of their legal capacity – set forth in the Constitution – was declared unconstitutional by the Constitutional Court of Romania. As a result, it no longer constitutes a legal obstacle to the right to vote. However, current estimates suggest that only a small number of persons with disabilities run for office and that the number of those who are actually elected to public office is even smaller.638 No data are available about the involvement of persons with disabilities in public office, and this very lack is an indicator of the marginal importance that the public and decision-makers attach to this issue (since statistics are available for other groups that are underrepresented at the decision-making level). Explanation of the problem Persons with disabilities, particularly those with severe disabilities, face barriers in exercising their right to vote to a much greater extent than persons without disabilities (Figure 41). In the World Bank survey, 33 percent of persons with severe disabilities mentioned that they had faced barriers to exercising their right to vote during the 2019 presidential election (the last election held before the collection of these data) compared with 7 percent of persons with some disabilities and 7 percent of persons without disabilities (irrespective of whether they voted or not). The barriers that they most frequently encountered were: (i) the inability to travel to the polling station (mentioned by 14 percent of respondents with severe disabilities compared with 5 percent of those with some disabilities and 3 percent of persons without disabilities) and (ii) the physical inaccessibility of polling stations (mentioned by 6 percent of respondents with severe disabilities compared with 1 percent of those with some disabilities or without disabilities). The complexity of procedures for requesting mobile ballot box was mentioned by 6 percent of persons with severe disabilities and by 3 percent of those with some disabilities. 636 The key topics related to the limited access of persons with disabilities to the electoral process discussed here are based on Art. 29 of the CRPD. 637 Rawert (2017). 638 NCIL (2018) and Schur and Kruse (2019). 314 Social participation FIGURE 41 Reported obstacles to exercising the right to vote in the 2019 presidential election, by degree of disability (percent) Inability to travel to the polling station Physical inaccessibility of polling stations 3 % 1% 5% 1% 14% 6% Complex procedures for requesting mobile ballot Inaccessibility of election materials and election box campaign 1% 2% 3% 2% 6% 3% Lack of voting materials in accessible formats Lack of confidential voting 2% 2% 1% 1% 2% 2% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). Accessibility of polling stations and election materials Approximately 10 percent of polling stations are not physically accessible to persons with reduced mobility. Persons with disabilities are allowed to vote at any polling station that provides them with easy access, but there may be no accessible polling stations nearby (there are no data on the number of persons with disabilities who would like to vote but are unable to because there are no accessible polling stations in their proximity). In rural areas, where polling stations have to cover larger geographical areas and therefore each one of them must be accessible, the share of accessible polling stations is higher, according to data from the Permanent Electoral Authority (PEA).639 The Bucharest-Ilfov region, with higher population and polling station densities than all of the other regions, has the lowest percentage of accessible polling stations. 639 The PEA is an autonomous administrative institution with general competence in electoral matters, whose mission is to ensure the organization and conduct of elections and referendums, as well as the financing of political parties and electoral campaigns. For more details, see Annex 1.8. 315 Social participation TABLE 14 Percentage of polling stations accessible to persons with reduced mobility Total Number of Number of Percentage number accessible inaccessible of accessible of polling polling polling polling stations stations stations stations Total 18,748 16,123 2,625 86.0 Area Urban 8,171 6,752 1,419 82.6 Rural 10,577 9,371 1,206 88.6 Development Northeast 3,395 3,175 220 93.5 region Southeast 2,260 1,955 305 86.5 South-Muntenia 2,610 2,373 237 90.9 Southwest Oltenia 1,965 1,762 203 89.7 West 1,925 1,771 154 92.0 Northwest 2,717 2,206 511 81.2 Center 2,342 1,948 394 83.2 Bucharest-Ilfov 1,534 933 601 60.8 Source: PEA (2020). Note: According to PEA Decision no. 33/2019 on certain measures aimed at the smooth planning and running of the 2019 Romanian presidential election, the category of voters with reduced mobility includes, but is not limited to, persons whose mobility is reduced by a permanent or temporary physical, sensory, or locomotor disability,age, weight,or pregnancy.Polling stations thatensureaccess tovoters withreduced mobilitymeans polling stations that meet all of the following minimum criteria: “a) the building accommodating the polling station benefits from pedestrian access; b) the building has a special access ramp for persons with locomotor disabilities; c) the polling station is located on the ground floor or the building accommodating the polling station is equipped with an elevator, a stair lift, an escalator, or a moving walkway; d) the polling station offers easy access, with no obstacles or stairs on the access hallway; e) the doors are at least 90 cm wide; and f) the polling station has adequate lighting.” The qualitative research also identified multiple barriers for persons with disabilities other than those with mobility problems. There is a serious lack of educational and election materials in formats that are accessible to them. Barriers affect people differently, depending on their type and level of disability. Informational barriers mostly affect persons with visual, hearing, and intellectual impairments, while physical barriers tend to mostly affect persons with locomotor and physical disabilities. There are no online or offline maps of accessible polling stations for each type of disability. Persons with disabilities cannot properly plan to vote because they lack guidance on how to do so. However, voluntary electoral board members and voters have recently launched an initiative to map polling stations based on their accessibility features. A website that contains up-to-date information about polling stations has been developed, including their accessibility for persons in a wheelchair, the availability of accessible restrooms, and any bad experiences of persons with disabilities who tried to vote there.640 The websites of political parties and political actors are not accessible. A simple click on the websites of the main political parties and institutions in Romania shows that they are not accessible to persons with disabilities. 640 https://www.votaccesibil.ro/chestionar 316 Social participation Access to alternative voting methods Although in theory persons with disabilities can vote with the help of a mobile ballot box or a companion, there are barriers interposed in the way of these options. In Romania, mobile ballot boxes are delivered to the homes of voters only in the following circumstances: (i) in accordance with a written request approved by the presiding officer of the polling station after the voter has produced medical proof or other documents proving that they cannot move or be moved to the polling station and (ii) when voters are institutionalized in a public or private health facility or a nursing home.641 The interviews with persons with disabilities carried out for this report revealed that in some cases people have had to provide not only their disability certificate but also a note from the family physician, even although the latter can be procured only by going to the doctor’s office. During the 2019 presidential election, the mobile ballot box was used by 79,849 voters, accounting for 0.9 percent of all people who cast their votes. The option of a companion (who, according to the law, should not be a polling station representative) is mostly used by visually impaired or illiterate persons, but it raises problems of voting secrecy. Other alternatives that would ensure the full secrecy of the vote are not available (such as Braille stencils or voting by proxy) or are considered to be too technically difficult to develop and implement (such as remote electronic voting, mobile apps, or electronic voting machines). Mail-in voting is only available to Romanians who reside abroad, and electronic voting is a solution that raises security problems. Mail-in voting was first implemented in Romania in 2015 but is currently available only to citizens residing in another country, even though some countries such as the UK use that option for persons with disabilities as well. Remote electronic voting (in other words, voting online from any device with an internet connection) is presently being used with no major issues in only one country in the world (Estonia), with other countries having either abandoned it after having implemented it for a while (France) or rejected it after the pre-evaluation advised against this solution for security reasons (Canada and Switzerland). In Romania, remote electronic voting is likely to be difficult to implement. Disability inclusion in election campaign platforms Persons with disabilities often feel they are ignored as citizens, and disability issues are not included in the electoral discourse. Disability issues are rarely discussed during election debates and are preponderantly treated as social problems, while election campaign platforms fail to propose ways of involving persons with disabilities in development strategies of society as a whole. Ensuring the right to vote will require not only an appropriate legal and administrative framework and the removal of barriers restricting the right to vote642 but also encouraging the turnout of voters with disabilities, providing them with accurate and full information about the voting process and the benefits brought by their participation in elections, and informing the public at large about the roles that persons with disabilities can play in society. 641 Law no. 208/2015 and CEB Decision no. 40/2020. 642 IFES (2014). 317 Social participation Promotion of the involvement of persons with disabilities as candidates The involvement of persons with disabilities in decision-making processes fosters self-determination643 and increases their visibility, thereby promoting inclusion, and increasing the physical and informational accessibility of the public space. Their inclusion in decision-making forums also fosters the achievement of an inclusive society and increases the likelihood of disability-centered public policies being adopted that reflect the reality of life as experienced by persons with disabilities. In Romania, the right of persons with disabilities to be elected is not limited by any legislative obstacles, but public perceptions affect their chances of being elected. The low visibility of persons with disabilities in public life means that there is no foundation on which to build the necessary support for including them in political life and for perceiving them as public office holders. This is greatly influenced by cultural factors that limit the perception of what are the appropriate roles for persons with disabilities to play in society. Their lack of involvement in society in general and in politics in particular – due to the vicious cycle of marginalization – reconfirms these pre-existing prejudices. No specific mechanisms are in place to support the candidacy of persons with disabilities. The only public mechanism supporting participation in elections in Romania is the reimbursement of election campaign expenses to political groups or candidates who received at least 3 percent of the votes cast at the national level644 during elections to the European Parliament and general, presidential, and local elections. The only expenses that can be reimbursed are those incurred for election campaign purposes. However, persons with disabilities may have special travel and communication needs that are not included among the eligible costs. Moreover, it can be extremely difficult to achieve 3 percent of the votes given the narrow “voter base” of persons with disabilities due to their limited visibility. Barriers to the electoral process for persons with disabilities BOX 50 “There should be someone who understands persons with disabilities, everyone who sees you with a disability feels sorry for you: ‘I understand very well what you are going through’. You cannot understand me, I was like you, you were never like me. You have no way of knowing what is in my soul. [...] We need one for us to make decisions about our lives. At the Parliament, there are persons with disabilities, but they are alone and fighting windmills.” (Person with disabilities, Dâmbovița county) “[Election materials] are not written in an easy and accessible language at all. They are not appropriate for persons with intellectual disabilities. I do not know whether the websites of political parties are accessible to persons who cannot see, whether they have screen reader-compatible content. I sometimes find it difficult to understand their language and figure out what issues they want to touch upon in their campaigns, what measures they propose. I do not think that political parties in our country are as well-meaning or see persons with disabilities as a potential voting group.” (Representative of a disability organization, Sibiu county) “Physical access is not always easy because you sometimes have to climb some stairs to get to a school’s upper floor, but there is also the alternative of mobile ballot box voting. Information about the election process is not sufficiently accessible to those with intellectual disabilities, and it is all up to their caregivers.” (Representative of a disability organization, Sibiu county) “Persons who cannot see can go in and vote accompanied by someone. There are no accessible ballots for visually impaired persons, many of whom do not know Braille anymore. Polling stations are not accessible to visually impaired persons [as they do not have guidance strips].” (Person with visual disabilities, Sibiu county) 643 Ippoliti et al. (1994). 644 Detailed rules for implementing Law no. 334/2006 on the provision of funding to political parties and election campaigns. 318 Social participation “There are no parking places reserved for persons with disabilities at their assigned polling stations.” (Person with physical disabilities, Sibiu county) “I got to the polling station, and a staff member or a family member accompanied me inside. My companion read me the list of options, and I told them who I was voting for.” (Person with visual disabilities, Sibiu county) “In Arad and other counties, they also ask for a family physician’s note certifying that the person is homebound. It’s a mockery! I mean, the medical certificate issued by a board is not enough and they also ask for a family physician’s note. Where is the logic in that? I do not get it. That in the end, you give up! That’s how I perceive it.” (Person with disabilities, Arad county) “The beneficiaries of the association participate in the voting process and, although not all polling stations are accessible, solutions are found so that everyone can exercise their right to vote. They are sometimes carried by gendarmes to the polling place, with the wheelchair and all, or the mobile ballot box is brought to the home of the person with disabilities.” (Representative of a disability organization, Neamț county) Source: World Bank qualitative research (February-May 2020). Recommended measures The following measures are recommended: 1 The Permanent Electoral Authority (PEA), in collaboration with organizations representing persons with disabilities, to draw up and distribute accessible media materials on the election process for persons with disabilities in accessible formats (using sign language, Braille, audio materials for persons with visual impairments, and simplified formats for the different types of intellectual disabilities). 2 The PEA to increase the number of accessible polling stations as needed according to the geographical distribution of polling stations. 3 The PEA to introduce mail-in voting for persons with locomotor disabilities. 4 The PEA and the Central Electoral Bureau (CEB) to produce ballots in accessible formats. 5 The PEA and the CEB to publish (in accessible formats, including on their websites) information on how to file notifications, complaints, or petitions about the difficulties that persons with disabilities may have encountered in attempting to exercise their right to vote, including their access to mobile ballot boxes. 6 The PEA and the CEB to provide an online and/or printed map with detailed information about accessible polling stations for persons with disabilities. 7 The PEA to propose a draft normative act on amending the Election Law, so that: (i) the list of expenses that can be reimbursed includes expenses related to specific disability needs, such as a sign language interpretation, personal care attendance, and/or assistive technologies and (ii) the voter threshold required for the reimbursement of election expenses is reduced from 3% to 1% exclusively for the election expenses of disability certificate holders, regardless of whether they are running independently or on lists of candidates. 8 The PEA to amend the Election Law in order to reimburse the campaign expenses only of those candidates who make a certain percentage of their election materials accessible. 319 Social participation 8.4 8.4 Limited participation Limited in public participation life life in public IN SHORT What are the rights of persons with disabilities? Persons with disabilities should be able to participate in the life of their communities and society: Individually, for example, through volunteer work As a group, for example, through foundations and associations. Persons with disabilities should be able to be involved in discussions on all topics related to a well-functioning community and society as well as on special topics related to disability. The participation of persons with disabilities in discussing and developing dedicated policy measures is known as “self-representation:” meaning that persons with disabilities represent their own ideas, concerns, experiences, and interests. What is the situation in Romania? The percentage of persons that participate as members or volunteers in any type of Persons with disabilities are involved organization as members or volunteers in any type 22% of organization to a much lesser extent than persons without 12% disabilities. In rural areas, the 8% participation rate is even lower, both for persons with disabilities and Without With some With severe disabilities disabilities disabilities overall. 320 Social participation What are the causes of this problem? Romania has a law that requires authorities to consult with the citizens when making policy and passing laws, as well as another law guaranteeing citizens free access to any information on such policies and laws. However, neither law is designed to encourage the participation of persons with disabilities. For example, neither includes any obligation on the authorities to prepare materials in accessible formats to enable citizens with sight, hearing, or cognitive disabilities to participate in the public consultation process. Not enough types of support, either financial or material, are available for organizations that represent the interests of persons with disabilities. A limited number of organizations can receive the types of support that do exist. What are the key changes that need to be made? The state must financially support, through a program, the projects developed by foundations and associations aimed at implementing the objectives of the National Strategy for the Rights of Persons with Disabilities 2021-2027. The criteria for granting the funding must be the same for all eligible organizations and should be publicly available. The satisfaction or dissatisfaction of persons with disabilities with public institutions must be measured. 321 Social participation 8.4 Limited participation in public life Participation in public life can take various forms, and ensuring the participation of persons with disabilities should create new opportunities for the whole of society. Participation in public life can be achieved individually (for example, through volunteer work or individual activism) or as a group (through larger civil society organizations or disability organizations). Participation can be in pursuit of varied goals from participation in political645 and decision-making processes to the management of community interests or participation in the organization and implementation of educational, cultural, and leisure activities. The participation of persons with disabilities can be focused on civic topics of general interest for a well-functioning society or on the concerns and problems of persons with disabilities and dedicated policies. The latter is generally called self-representation and has been fueled by movements aimed at the emancipation of persons with disabilities, such as the one that resulted in the adoption of a civil rights act, the Americans with Disabilities Act of 1990 in the United States of America, which was initiated by persons with disabilities.646 Description of the problem The participation of persons with disabilities in public life can be analyzed by looking at their close relationships. The data show that persons with disabilities are generally less satisfied with their personal relationships and that they feel lonelier than persons without disabilities. In the World Bank survey of persons with and without disabilities, persons with severe disabilities reported a mean level of satisfaction with personal relationships that was slightly above the median value, namely 6 on a scale of 1 to 10. By comparison, the mean level of satisfaction with personal relationships reported among persons with some disabilities was 7 and that of persons without disabilities was 8. According to EU-SILC data, Romania has the second lowest level of satisfaction with personal relationships among persons with severe disabilities in the EU after Bulgaria. The proportion of persons with severe disabilities who feel lonely most of the time is 27 percent, which is more than two times higher than that of persons with some disabilities (13 percent) and almost 4 times higher than that of persons without disabilities. Romania has one of the highest shares of persons with severe disabilities who feel lonely in the EU-27 (Romania being one of the seven EU-27 countries whose rates are higher than 25 percent). Participation by persons with disabilities in public life can be achieved not only on an individual level but more frequently with the support of DPOs.647 These organizations can empower persons with disabilities to make their voices heard so that they can make their priorities publicly known. DPOs can advance solutions for change and raise collective awareness. As vehicles for self-promotion, these organizations give persons with disabilities the opportunity to develop such skills as negotiation, organization, mutual support, and information exchange.648 Participation in all types of associations is low among the general population of Romania, and persons with disabilities are even less involved than persons without disabilities. The World Bank survey of persons with and without disabilities revealed 645 Sometimes, participation in public life precedes and supports active political involvement through candidacy (Problem 8.3). 646 The key topics that will be addressed regarding the limited access of persons with disabilities to public life are based on Art. 29 of the CRPD. 647 DPOs are representative organizations in which persons with disabilities constitute a majority through their presence in the board and among staff members. 648 UN (1982). 322 Social participation that few Romanian citizens are involved in the types of organizations and the forms of association for which data were collected. The rate of participation varies between a low of 3 percent for local initiative groups and a high of 5 percent for landlord- tenant associations, and the data showed that persons with disabilities, especially those with severe disabilities, are even less involved (see Annex-Table 56). Only 11 percent of persons with some disabilities and 8 percent of persons with severe disabilities are involved in any kind of association, compared with 19 percent of persons without disabilities. Men reported much higher rates of association involvement than women, with a rate that is over two times higher for men than for women among persons with severe disabilities. The difference between urban and rural areas as regards association involvement is significant only among persons with severe disabilities, with 10 percent of them being involved in various kinds of association in urban areas, compared with only 4 percent in rural communities (Annex-Table 55).649 Involvement Figura by 13: Implicarea persons persoanelor cuwith disabilities dizabilități in an sau într-o organizație organization or association, altă formă de asociere, în funcție deby FIGURE 42 of disability degree(procent) dizabilități (percent) As members: As volunteers: 13 % 8% 7% 5% 4% 4% Persons without disabilities Persons with some disabilities Persons with severe disabilities Source: World Bank survey of persons with and without disabilities (2020). Barriers preventing persons with disabilities from participating in public life BOX 51 “We were invited as experts. Unfortunately, our desires have been inserted in many strategies, but they have not been respected or [implemented].” (DPO representative, Sibiu county) “It is very rare that we are called to participate in round tables to discuss disability issues. I, as an NGO representative, am on the Consultative Council of the Social Assistance Department of the Mayoralty, but I was never invited to a meeting.” (DPO representative, Sibiu county) “In institutions, the personnel are never trained to interact with persons with visual impairments. Everything depends on the person and the persons’ negotiation skills” (Person with disabilities, Sibiu county) “Some mayoralties, especially in rural areas, are not always aware of the legislation for persons with disabilities, thus they need to be informed by [our DPO].” (DPO representative, Teleorman county) Source: World Bank qualitative research (February-May 2020). 649 These nationwide gaps between populations with and without disabilities are noticeable in a context where, according to Eurostat, Romania had the third lowest rate of participation in voluntary activities across the European Union in 2015, almost three times lower than the EU-27 mean (3.6 percent versus 12.9 percent). 323 Social participation Explanation of the problem It is also important to encourage persons with disabilities to become involved in public life through mechanisms that can make their voices heard and can integrate their opinions into the decision-making processes between elections. Inclusiveness of laws on transparent decisions and information Laws on the transparency of decisions and public information do not consider the specific needs of persons with disabilities.650 In a 2014 report of the EU Fundamental Rights Agency, Romania was one of the states identified as having neither the legislation required to set up mechanisms for consulting with persons with disabilities on law and policy development nor any systematic practices established in the field (along with Greece, Lithuania, and the Netherlands).651 In accordance with Romania’s law on transparent decision-making throughout the public administration, all public institutions ought to publish annual reports to show that they have consulted widely with civil society while adopting laws.652 However, not all institutions have published those reports on their websites. Moreover, persons with disabilities cannot review the policy proposals and express their points of view since these proposals and the consultation processes are not accessible. Nor is it possible to request any information of public interest in accessible formats. Public support mechanisms for associations of persons with disabilities Existing legislation does not provide a transparent mechanism for supporting the NGOs that represent persons with disabilities. Law no. 448/2006 identifies certain organizations that may receive support from the NARPDCA, though it is not clear how they have been selected, how they will be supported, and how such support will be monitored and evaluated.653 The law explicitly specifies the associations that may receive support, thus reducing the chances of ensuring the representation of different types of disabilities654 and the array of organizations active in this field.655 As a result, the organizations benefiting from public subsidies do not reflect the full need for the social and professional integration of persons with disabilities. There are no references in the law to mechanisms for checking the representativeness of these organizations, nor are there any criteria for providing them with support or any indicators for monitoring their results. 650 Law no. 52/2003 on the transparency of decision-making across the public administration and Law no. 544/2001 on free access to public information. 651 FRA (2014). 652 Pursuant to Law no. 52/2003 on the transparency of decision-making, during the legal act drafting process, the public administration authority will make a public announcement regarding that action on its own web page, display it at its offices in a publicly accessible area, and send it to the central or local media, whichever is applicable. Such announcements will be published “at least 30 business days before the submission for approval to the public authorities,” allowing “at least 10 calendar days, in the case of the draft legal acts referred to in paragraph (2), to receive, in writing, proposals, suggestions, or opinions about the draft legal act under public consultation.” Also, the public authority concerned shall organize a meeting in which the draft legal act will be publicly debated, where that has been requested in writing by a legally established association. 653 Art. 98 of Law no. 448/2006 specifies the following: the Romanian Association of the Blind, the Romanian Association of Blind War Veterans, the Romanian National Association of the Deaf, the National League of Organizations with Disabled Workers from the Craft Cooperative, and the Romanian National Disability Council. Under the law, these organizations can receive public subsidies from the budget of the NARPDCA exclusively as supplemental revenues (http://anpd.gov.ro/web/ sume-acordate-ong-urilor-de-la-bugetul-de-stat-prevazute-la-titlul-59-11/). 654 To name just one example, persons with visual disabilities have two representative associations, whereas persons with intellectual and motor disabilities are represented by only one federation. 655 According to data from the National NGO Registry, there are over six thousand organizations and foundations whose remits, as specified in the Registry, are relevant to disability. However, based on the information in this Registry, it cannot be determined how many of these are actually active. They are highly unevenly distributed by urban/rural area of residence, with only 16 percent of them being based in rural areas (Annex-Table 57). 324 Social participation Recommended measures The following measures are recommended: 1 The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) to amend Law no. 448/2006 so that Disabled Persons’ Organizations (DPOs) are supported by a funding program for projects aimed at implementing the objectives of the National Strategy for the Rights of Persons with Disabilities 2021-2027, with clearly defined criteria for the selection of eligible entities based on a set of indicators and with a regular outcome monitoring process. Eligible organizations can come from any of the eight areas included in the strategy. 2 The NARPDCA to finance research aimed at creating a system of indicators to measure the satisfaction of persons with disabilities with public services, to be ready for implementation. 325 Implementation and monitoring of the CRPD 9 Implementation of the CRPD and 9. Implementation of the IN SHORT monitoring of the observance of the CRPD and monitoring the rights of persons with disabilities rights of persons with How can the observance of the rights of persons with disabilities be ensured? disabilities As a signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), the Government of Romania is required to ensure that the rights of persons with disabilities as set out in the CRPD are observed throughout the country. In order for this to happen: Different state institutions must work together. The state must work together with persons with disabilities and their organizations in ways described in the CRPD. The Romanian government must do three things: 1. It must establish: (i) one or more institutions to act as focal points on this issue and (ii) a coordination CRPD mechanism to implement the CRPD. The focal points must be institutions that are exclusively concerned United Nations Convention on the Rights of Persons with issues related to persons with disabilities. The with Disabilities role of the coordination mechanism is to bring state institutions together with persons with disabilities and their organizations to ensure the observance of the rights of persons with disabilities. m de nis 2. The government must also support all Meca Coord independent mechanisms that it has tasked to on are Coordination Independent persons with monitor and verify how the CRPD and the rights of mechanism mechanism disabilities and their persons with disabilities are being observed in organizations Romania. These bodies must be independent organizations working in the field of human rights, including those of persons with disabilities. 3. It must ensure that persons with disabilities and their organizations participate in all of the government’s decision-making about issues that concern their lives. 326 Implementation of the CRPD and monitoring of the observance of the rights of persons with disabiliti What are the main problems in Romania? The analysis of the situation in Romania indicated three major problems: 1 The limited capacity and coordination of actors at the central level At the national level, state institutions do not make enough effort to ensure the observance of the rights of persons with disabilities as required by the CRPD. Moreover, there is no sufficient inter-institutional collaboration between them to ensure the implementation of the CRPD, and they do not work enough together with persons with disabilities or their organizations. 2 The limited role of independent mechanisms for monitoring the implementation of the CRPD The independent mechanisms currently do not play much of a role in observing and monitoring the way in which the CRPD is applied in Romania. 3 The limited participation of persons with disabilities and their representative organizations in the monitoring process Very few persons with disabilities or their organizations take part in process of monitoring the implementation of the CRPD. 327 Implementation and monitoring of the CRPD 9 Implementation of the CRPD and monitoring the rights of persons with disabilities An important safeguard for respecting the rights of persons with disabilities is the provision of a framework for the implementation and monitoring of the CRPD, with the participation of and in consultation with persons with disabilities. According to the CRPD, the Romanian State must meet three basic requirements: (i) to designate one or more focal points656 within the government responsible for the implementation of the CRPD and to give “due consideration to the establishment or designation of a coordination mechanism within the government to facilitate related measures in different sectors and at different levels;” (ii) to “maintain, strengthen, designate, or establish outside the government a framework, including one or more independent mechanisms” to “promote, protect, and monitor the implementation of the Convention;” and (iii) to ensure that persons with disabilities and their representative organizations “will be involved and participate fully in the monitoring process.”657 Art. 33, the framework for guiding the implementation of the CRPD, aims to ensure that the human rights guaranteed by the CRPD are put into practice and transformed into real changes in the lives of persons with disabilities.658 Specifically, this means reducing the current mismatch between the norms established in the CRPD and the practical reality in the States that have ratified it. This difference may be the result of several structural factors such as the lack of coordination between ministries and levels of government, the lack of national monitoring to hold the government accountable for the obligations under the CRPD and the Optional Protocol to the UN Convention against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment,659 or a lack of awareness among the general public about these human rights standards for persons with disabilities.660 Art. 33 is the framework for guiding the CRPD implementation process, and properly complying with its mandate is one of the first steps that a State party must take when the implementation process begins. For this reason, organizations of persons with disabilities and other civil society representatives attach great importance to this article, considering that its fulfillment is an indicator of the degree of commitment of a country to the rights enshrined in the CRPD.661 656 Focal points may be a structure or an employee of a ministry or group of ministries, an institution, such as a commission for persons with disabilities, or a specific ministry, such as a ministry for human rights, a ministry for persons with disabilities, or a combination of the three. Even if these bodies or mechanisms already exist in Romania, they will need to be reviewed to ensure the implementation of the CRPD and the coordination of efforts between different sectors at the local, regional, and national levels. Regardless of its designated form, the focal point should not act in isolation but should play a leading role in coordinating the implementation of the CRPD. It should be endowed with adequate human and financial resources; be established by legislative, administrative, or other measures; be appointed permanently; and be located at the highest possible level in government (UNDESA and the Secretariat for the CRPD (2007: 94)). 657 CRPD, Art. 33. 658 OHCHR (2011). 659 Through Law no. 109/2009 for the ratification of the Optional Protocol, adopted in New York on December 18, 2002, to the Convention against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment, adopted in New York on December 10, 1984. 660 MDAC (2011: 26). 661 Astorga Gatjens (2011). 328 Implementation and monitoring of the CRPD The main issues preventing the proper implementation of the mandate of Art. 33 that will be discussed in this section correspond to the three paragraphs of the article, and are: 1. The limited capacity and coordination of actors at the central level in developing and implementing policies to realize the rights of persons with disabilities. 2. The limited role of independent mechanisms for monitoring the implementation of the CRPD. 3. The limited participation of persons with disabilities and their representative organizations in the monitoring process. 329 Implementation and monitoring of the CRPD 9.1 9.1 The limited The capacity limited and capacity coordination and coordination of actors at IN SHORT of actors at the the central level central level How must the observance of the rights of persons with disabilities be ensured? Focal Focal point Focal point point In order to ensure the observance of the rights of persons with disabilities, the CRPD requires the Government of Romania to establish one or more institutions to act as focal points at the national level. These focal points can be appointed, for example, at the level of all the institutions responsible for taking measures to ensure the observance of the rights of persons with disabilities. The focal points need to do several things, including: collaborate with the other state ensure that persons with collect and make public institutions and with persons disabilities and their information and data related to and organizations outside the organizations are involved in the circumstances of persons state system on all topics the preparation and with disabilities. related to the rights of persons implementation of laws that with disabilities; influence their lives; State Besides designating focal points, the CRPD also requires institutions the state to create a coordination mechanism at the national level. This should include all state institutions, organizations organizations of persons with disabilities, and any other Organizations of that ensure the observance of organizations that play a role in ensuring the persons with disabilities the rights of observance of the rights of persons with disabilities. persons with disabilities 330 Implementation and monitoring of the CRPD What is the situation in Romania? 5 In Romania, focal points have only been organized in five ministries, but, in recent years, their role in the implementation of the CRPD has been limited. There is no coordination mechanism at the government level, as required by the CRPD. The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) set up a committee composed of 16 ministries, which, however, has failed to function as a coordination mechanism. Neither persons with disabilities nor their organizations have been involved in the state’s decisions that have related to their lives. What are the causes of this problem? There is no clear law in Romania requiring state institutions to set up additional focal points and a functional coordination mechanism. The representatives of the existing focal points and of the committee set up by the NARPDCA have not been given any training in the provisions of the CRPD. There is no clear procedure for persons with disabilities and their organizations to be involved in the state’s decisions that affect their lives. The NARPDCA does not have enough specialists or financial resources available to be able to gather the necessary data on measures related to persons with disabilities and on the results of those measures. What are the key changes that need to be made? It is necessary to pass a law that clearly sets out the requirement to establish focal points and a coordination mechanism and to train the staff of these institutions in how to monitor the implementation of the CRPD. The NARPDCA must be given more well-trained specialists and financial resources to enable it to gather all the necessary data about any measures related to per- sons with disabilities and their results. 331 Implementation and monitoring of the CRPD 9.1 The limited capacity and coordination of actors at the central level In order to ensure the implementation of the CRPD for the observance of the rights of persons with disabilities, Romania has the obligation to designate one or more focal points, units dedicated to the goal of implementing the CRPD within the government. According to the Convention, the required focal points should fulfil several functions, including: (i) to be access points on CRPD-related issues for the government and the civil society; (ii) to inform the representatives of the government and its ministries about the obligations set out in the CRPD; (iii) to ensure the involvement of civil society in implementing the CRPD; and (iv) to collect and report information on the circumstances of persons with disabilities in terms of their rights under the CRPD.662 Each State party may choose to designate one or more focal points,663 either in all of the institutions with responsibilities under the policies intended for persons with disabilities or only in the key institutions. When a country has appointed several focal points, a 2009 report by the UN High Commissioner for Human Rights recommended that an overall focal point be appointed to coordinate the work of the others.664 As the implementation of the Convention requires strong and constant support from the government, the UN recommends that this overall focal point should be established at the level of the Prime Minister’s office.665 It is also responsible for promoting, informing, and guiding the government on issues related to the implementation of the Convention, monitoring and reporting the situation regarding persons with disabilities, and interacting with civil society. Last but not least, the overall focal point must have access to the necessary resources (experts and financial resources) to fulfil their responsibilities.666 In Romania, focal points have been created in five ministries but in recent years, their role in the implementation of the CRPD has been limited. Law no. 8/2016667 chose five ministries for these focal points: (i) the Ministry of National Education and Scientific Research; (ii) the Ministry of Justice; (iii) the Ministry of Health; (iv) the Ministry of Communication and Information Society; and (v) the Ministry of European Funds. Each focal point has to include at least one expert in the application of the Convention and in developing public policies. During the analysis carried out for this report, online information was available only on the existence of two focal points at the Ministry of Communication and Information Society and the Ministry of European Funds,668 but even in these cases, there were no contact details or other information about their activities. Qualitative research conducted in 2019 by the World Bank indicated that some of Romania’s focal points were established only after 2018, that their role in ensuring the implementation of the CRPD within the ministry has been reduced or is non-existent, that persons with disabilities or their organizations are not involved in the decision-making processes, and that the focal points had not collected or reported 662 MDAC (2011: 26). 663 In this regard, the UN High Commissioner for Human Rights recommends that focal points be designated in all or almost all government ministries or departments: “The designation of disability focal points at the level of government ministries responds to the recognition that the full and effective implementation of the Convention requires action by most, if not all, government ministries.” (OHCHR, 2009: 6). 664 “For the effective implementation of the Convention, it might be advisable to adopt a two-pronged approach and appoint focal points at the level of each or most governmental departments/ministries as well as to designate one overall focal point within the government responsible for the implementation of the Convention.” (OHCHR, 2009: 6). 665 UN (2014). 666 OHCHR (2009: 7). 667 Law no. 8/2016 on the establishment of the mechanisms provided for by the Convention on the Rights of Persons with Disabilities, Art. 16. 668 At present, the Ministry of Transport, Infrastructure, and Communications and the Ministry of European Investments and Projects. 332 Implementation and monitoring of the CRPD any statistical data on CRPD implementation.669 The Operational Plan of the NSPD 2016-2020 proposed the designation of 16 focal points within the main institutions involved in implementing the strategy, but this has not been done.670 Besides the obligation to designate focal points, the CRPD recommends the establishment of a coordination mechanism at the national government level. Although the CRPD does not define the form of the coordination mechanism, it usually includes “representatives of various ministries and organizations of persons with disabilities, and also other civil society organizations, the private sector, and trade unions.”671 Its role is to ensure coordination among and facilitate the dialogue between the stakeholders involved. In Austria, Belgium, and the United Kingdom, the coordination mechanism consists of focal points, in other countries (the Czech Republic, Poland, and Sweden), the mechanism consists of focal points together with representatives of other ministries, while in others (Germany and Sweden), there is a coordination mechanism separate from the focal points.672 The CRPD recommends the latter coordination mechanism when the focal points do not have sufficient staffing or “authority to coordinate policy across and throughout the government.”673 Such a coordination mechanism “could be convened by the Prime Minister, who would have the authority and the resources to convene the relevant ministries in order to request information and that action be taken.”674 Coordination at the technical level can be carried out by the overall focal point. Although the coordination mechanism is at the government level, the CRPD recommends that it should include representatives of persons with disabilities.675 In order to ensure the coordination of the institutions involved in implementing the Convention in Romania, the government approved the creation of an inter- ministerial committee for ensuring the implementation of the CRPD.676 In December 2019, the Inter-ministerial Committee for Ensuring the Implementation of the CRPD (ICEIC) was established, comprising representatives of the public authorities and institutions involved in fulfilling Romania’s obligations under the Convention at the level of State secretaries and technical staff. This Committee includes 16 ministries, together with the institutions under their jurisdiction, coordination, or authority. The ICEIC was set up under the exclusive coordination of the NARPDCA and does not report to a higher authority, which hinders the chances that the CRPD obligations will be met. Neither the staff of the focal points nor ICEIC members have received any training in the CRPD. Law no. 8/2016 on the establishment of focal points indicates that their members should be experts in the “scope of the Convention.” The World Bank’s 2019 qualitative research into the focal points revealed that their staff had signaled the need for training on the Convention and its application in their field of activity.677 Given the complexity of the CRPD and the vital need for both focal point 669 World Bank (2019). 670 At the time when the World Bank qualitative research report was being prepared (September 2019), the NARPDCA, together with representatives of the civil society, was preparing a draft government decision to increase the number of focal points. 671 OHCHR (2009: 8). 672 OHCHR (2011). 673 MDAC (2011: 37). 674 MDAC (2011: 37). 675 In certain countries, advisory boards (which include persons with disabilities and representatives of their organizations) are part of the coordination mechanism. The recommendation in this regard is that these organizations should not be considered as independent mechanisms at the same time. For a discussion of this subject, see OHCHR (2011: 45). 676 Memorandum on the following subjects: “Measures necessary to fulfill the prerequisite; Implementation and application of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in accordance with Council Decision 2010/48/ EC concerning the conclusion, by the European Community, of the United Nations Convention on the Rights of Persons with Disabilities.” 677 World Bank (2019). 333 Implementation and monitoring of the CRPD members and ICEIC members to have a deep understanding of the CRPD and its values, it is absolutely necessary that they should receive systematic training on the CRPD and on specific issues involved in implementing all of its articles. Currently, there is no mechanism for collecting feedback on the implementation of the CRPD from persons with disabilities or their representatives. According to Art. 4 para. (3) of the CRPD, Romania must actively involve persons with disabilities through the organizations that represent them in developing and implementing the legislation and policies needed to implement the CRPD.678 In Romania, persons with disabilities and their representative organizations are not involved systematically in developing policies that are relevant to them. Currently, the Coordinating Council for the Protection of the Rights of Persons with Disabilities, the Rights of Children, and Adoption functions as an advisory body to the president of the NARPDCA, but it includes only one organization that represents persons with disabilities (the National Disability Council of Romania). Other countries such as the United Kingdom679 and France (see Box 52) have created mechanisms through which the experiences and expertise of persons with disabilities are systematically taken into account. Presentation of the National Advisory Council for Persons with Disabilities, BOX 52 France The French government set up the National Advisory Council for Persons with Disabilities in 1975 with the aim of ensuring the participation of persons with disabilities in the development and implementation of policies concerning them. It can be consulted by the President of the Republic, the President of the Senate, or by the ministers on any project, program, or research of interest to persons with disabilities, and it provides feedback on all bills relevant to disability. At the same time, it can address, on its own initiative, any issue related to policies that are relevant to persons with disabilities and is responsible for assessing the material, financial, and moral situation of persons with disabilities living in France and of French nationals living abroad who are covered by the French social protection system and for submitting the necessary proposals to Parliament and the government in order to ensure the care of persons with disabilities through multi-annual programming. For the current term (2020-2023), the Council consists of 160 members (the vast majority having been elected through a public competition involving individuals, experts, and private entities) who fall into the following six categories: (i) representatives of organizations of persons with disabilities and their families; (ii) representatives of professional associations; (iii) experts in the field of disability; (iv) representatives of social dialogue organizations; (v) institutions working in the field of prevention, employment, social protection, and research; and (vi) representatives of territorial authorities and Parliament. The Council is divided into nine specialized committees that cover: (i) territories and citizenship; (ii) accessibility and universal and digital design; (iii) benefits and resources for persons with disabilities; (iv) education, schooling, higher education, and cooperation between mainstream and special education; (v) training, regular and adapted employment, and sheltered work; (vi) European and international issues and convention implementation; (vii) the health, welfare, and treatment of persons with disabilities; (viii) culture, media, and sports; and (ix) institutional organization. The Council conducts its activity through monthly plenary sessions or as required, and the specialized committees also meet at least once a month. Ministries send any draft legislation related to persons with disabilities to the President and the Secretary General for feedback. The latter forwards the draft to the competent specialized committee, which then draws up a position note together with a proposal for opinion to be debated and endorsed by the plenary Council. Opinions can be any one of the following: favorable opinion, favorable opinion with reservations, acknowledgment, or unfavorable opinion. Source: French government (2020). 678 This involvement of persons with disabilities and their representatives is complementary to that covered by Art. 33 para. (3) regarding the monitoring of the implementation of the CRPD. 679 For an overview of the mechanism used to involve persons with disabilities during the period 2014-2020, see UK Department for Work and Pensions (2014: 5-7). For a presentation of the way in which organizations of persons with disabilities are currently involved, see https://www.gov.uk/government/news/disabled-peoples-organisations-dpos-forum-launches-this-month. 334 Implementation and monitoring of the CRPD The NARPDCA has limited resources to monitor the implementation of the CRPD. The NSPD 2016-2020 specified that the NARPDCA would monitor the implementation of the strategy and report the progress indicators provided in the monitoring plan on an annual basis. Despite some attempts in 2018, this has not happened because of a lack of staff available to be allocated to this activity and technical resources including expertise on monitoring systems, indicators, and data collection. Between 2019 and 2020, for the preparation of this diagnosis, the NARPDCA increased its data collection role, having signed data collection protocols with key institutions and having defined and refined the indicators used, and this experience will be useful for monitoring the implementation of the next strategy between 2021-2027. Moreover, the NARPDCA will define the final indicators of the next strategy and will prepare the first monitoring report on the implementation of the strategy, with technical assistance from the World Bank. However, the sheer volume of data that will need to be collected annually as well as the technical expertise and analysis that will also be necessary will require a considerable additional allocation of human and financial resources. Recommended measures The following measures are recommended: 1 The government to amend and complete the legislation to: (i) establish focal points in each institution with responsibilities for implementing the CRPD and (ii) develop a CRPD implementation coordination mechanism for which the National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) should ensure the coordination of the activity and the structured participation of persons with disabilities and their representatives (including NGOs) to ensure systematic feedback on legislative proposals in the field of the CRPD. 2 The NARPDCA to strengthen the capacity of the representative organizations for persons with disabilities to ensure systematic feedback on legislative proposals in the field of the CRPD. 3 The NARPDCA to conduct CRPD information sessions for members of the focal points and the coordination mechanism. 4 The NARPDCA to strengthen its administrative capacity for implementing the CRPD in the following areas: (i) setting up a unit for the monitoring and evaluation of the National Strategy for the Rights of Persons with Disabilities (NSRPD) 2021- 2027; (ii) the provision of methodological assistance to all other institutions concerned in collecting data about the realization of the rights of persons with disabilities in their specific field of activity; and (iii) the systematic reporting of indicators (including of those provided for in the NSRPD 2021-2027). 5 The NARPDCA to elaborate a comprehensive work plan for monitoring the NSRPD 2021-2027. 6 The NARPDCA to elaborate annual synthetic reports on the status of the implementation of the NSRPD 2021-2027. 335 9.2 The limited role of independent mechanisms IN SHORT for monitoring the implementation of the CRPD What does the monitoring framework entail? SURES TO SA MEA F KE WITH DISABIL EGUA T TA ONS S ITI ES RD Two broad categories of institutions ensure a R HA PE good implementation of the CRPD: T TH NS E Institutions that must take measures to IO RIG UT safeguard the rights of persons with HTS T INSTI disabilities (such as the NARPDCA and the OF Ministries of Health, Labor, Education, or CRPD Justice); N IN S TIT Convention on the TA K E Rights of Institutions that must monitor and verify Persons with Disabilities UT RE how measures are taken and their results IO SA NS (the independent mechanisms and civil RE AT TH AS U MO N IT ME society). W OR A HO N D V E RIF Y One very important role of the independent mechanisms is that they must oversee the services and programs being provided for persons with disabilities to ensure that are free from exploitation, violence, and abuse. Romania should have one or more independent mechanisms. The independent mechanisms process complaints about the violation of the rights of persons with disabilities, can notify themselves that such violations occurred, and can visit the relevant institutions or services for persons with disabilities to verify whether the violations in question have taken place. What is the situation in Romania? In Romania there are three autonomous state authorities that can be defined as independent mechanisms: 1. The National Council for Combating Discrimination 96 (NCCD). In 2019, the NCCD examined 96 complaints. complaints 2. The Ombudsman. In 2019, the Ombudsman examined 174 complaints and published 25 visit reports on the situation prevailing in residential 174 25 centers for underage and adult persons with complaints reports disabilities and in psychiatric hospitals. Implementation and monitoring of the CRPD 3. The Monitoring Council for the Implementation of the CRPD. Since 2018, the Monitoring Council prepared 134 134 monitoring reports, and in very few of the cases did the monitoring Council conclude that the rights of persons with disabilities reports had been violated. In even fewer cases were the culprits punished in any way. Why are the causes of this problem? None of these independent institutions seems to have played a clear and constant role in promoting the rights of persons with disabilities. The verification visits were sometimes carried out without the independent mechanisms actually analyzing the extent to which the rights of persons with disabilities as defined by the CRPD were being observed. Persons with disabilities and their representative organizations have not been involved in the monitoring visits. What are the key changes that need to be made? The organizations of persons with disabilities and those of the civil society must be involved through a transparent procedure during the monitoring visits. The law must be amended so that the Monitoring Council should not only verify complaints against residential institutions, as it does at present, but also have a duty to monitor their compliance with the CRPD. In doing so, it must work with per- sons with disabilities and their representative organizations. 337 Implementation and monitoring of the CRPD 9.2 The limited role of independent mechanisms for monitoring the implementation of the CRPD Romania needs to put in place a framework composed of one or more independent mechanisms to promote, protect, and monitor the implementation of the CRPD. Art. 33 differentiates the institutions that are responsible for the implementation of the CRPD (as discussed above) from those in charge of monitoring, which are these independent mechanisms and civil society (civil society’s role will be discussed in the next section). Independent mechanisms are human rights institutions that collect and analyze information to track and support the government’s progress in implementing the mandates of the CRPD. Their independence is a key element of their function. To this end, the framework must consist of predictable and transparent funding rules, the autonomy of the independent mechanisms, and a power structure that limits the influence of government representatives in the decisions of the mechanism’s management bodies.680 The CRPD also recommends that independent mechanisms comply with the UN’s Paris Principles (Principles relating to the Status of National Institutions for the Promotion and Protection of Human Rights).681 The framework provided by the independent mechanisms must have three functions: promoting, protecting, and monitoring the implementation of the CRPD. Promoting means raising awareness through information, training, and research campaigns on fundamental rights. Protecting means settling complaints about alleged human rights violations through mediation and amicus curiae682 in court, representing the victims and providing legal assistance to people asserting their rights that they feel have been violated. Monitoring means assessing compliance with both the legislation and practice related to the rights of persons with disabilities by carrying out general surveys and reporting to the relevant authorities.683 The independent mechanisms must monitor both facilities and programs designed to serve persons with disabilities to prevent all forms of exploitation, violence, or abuse. To prevent all forms of exploitation, violence, and abuse, States parties should ensure that all “closed” programs and facilities for persons with disabilities are effectively monitored by independent mechanisms, particularly residential institutions for children and adults with disabilities, psychiatric hospitals, and any other institutions where a person with disabilities has been placed following a State injunction and which that person cannot leave whenever they wish. The independent mechanisms that verify the observance of human rights in closed facilities can be the same as those that monitor the implementation of the Convention as a whole or they can be different, but they must still comply with the Paris Principles. Civil society needs to be actively involved in the process of monitoring the implementation of the CRPD in coordination with the independent mechanisms.684 According to the Convention, States parties should ensure that independent monitoring frameworks allow for, facilitate, and ensure the active involvement of organizations of persons with disabilities in such frameworks and processes, through formal mechanisms to ensure that their voices are heard and recognized. This involvement 680 Bantekas et al. (2018: 996). 681 These are the “Principles relating to the Status of National Institutions” known as the Paris Principles, adopted by the UN General Assembly through Resolution no. 48/134 of December 20, 1993. 682 Literally, “friend of the court” or “intervenor” in the Romanian legislation, regulated by the Civil Procedure Code, Art. 65. The intervener is not a party to a court case but provides information about a case (for example, through a legal opinion or a report) and may draw the court’s attention to certain relevant aspects (such as the infringement of certain rights). 683 De Beco (2011: 94-96). 684 Law no. 8/2016 and Law no. 35/1997 regarding the organization and functioning of the Ombudsman institution (revised) include this obligation, which has not yet been fully realized. 338 Implementation and monitoring of the CRPD can take a range of different forms, including, for example, giving them seats on the board of the independent monitoring mechanisms or on their advisory bodies.685 In Romania, there are three autonomous State authorities that could play the role of independent mechanisms: the National Council for Combating Discrimination (NCCD), the Ombudsman, and the Council for Monitoring the Implementation of the Convention (Monitoring Council). The NCCD is the autonomous state authority, under parliamentary control, that is the guarantor of the observance and application of the principle of non-discrimination.686 The Ombudsman aims to defend the rights and freedoms of individuals in their relations with public authorities687 in five fields, including “the rights of persons with disabilities” and “the prevention of torture in detention facilities.”688 The Monitoring Council is responsible for monitoring the compliance of “closed” institutions with the rights of persons with disabilities, verifying the legality of their admittance to such institutions, and notifying competent judicial bodies whenever there are indications showing a violation of the rights of persons with disabilities as result of criminal offenses. It may also file a complaint, where appropriate, against non-prosecution decisions or dismissal of charges.689 The NCCD plays an important role in protecting and monitoring the rights of persons with disabilities,690 but there is scope to enhance its promotion role. In 2019, the NCCD examined 96 complaints regarding rights protection (about 5 percent of the total number of complaints), of which only three had been brought by the NCCD themselves (known as ex officio complaints). In 18 of these cases, the NCCD found that rights had been violated but levied fines in only five cases (see Table 15).691 Given the few complaints received compared to the frequency of the cases of discrimination experienced by persons with disabilities, the NCCD could be paying a bigger role in promoting human rights. Regarding rights promotion, the NCCD works with NGOs from the field of human rights protection, runs national programs and campaigns, and conducts studies, surveys, research, and analysis of the observance of the principle of equality and non-discrimination, which it presents to the government and makes them public.692 However, in recent years it has taken no consistent initiatives to promote the rights of persons with disabilities.693 685 CRPD Committee (2018b, para. (38)). 686 The NCCD operates under GO no. 137/2000, republished. 687 Law no. 35/1997, Art. 1. 688 Law no. 35/1997, Art. 34 para. (1). A detention facility means any place where persons are deprived of their liberty following a decision of an authority, upon the latter’s request or with its express or tacit consent. For the purposes of this law, the following are detention facilities or, as the case may be, places where the institution of the Ombudsman exercises its prerogatives regarding the prevention of torture – penitentiaries, including penitentiary hospitals; educational centers; detention centers; police custody facilities and pre-trial detention centers; residential services for minors having committed criminal offenses and who are not criminally liable; psychiatric hospitals and units for the enforcement of security measures; psychiatric hospitals; transit centers; accommodation centers for foreigners in public custody operated by the General Inspectorate for Immigration; special accommodation centers for asylum seekers run by the General Inspectorate for Immigration, which are subject to the legal regime related to transit areas; closed centers providing assistance services to drug addicts; and any other place that meets the requirements provided for in para. (1) or is part of the health system or social assistance system. 689 Law no. 8/2016 regarding the establishment of the frameworks provided for by the CRPD, Art. 4. 690 According to the law, the prerogatives of the NCCD refer to the prevention, mediation, investigation, finding, sanctioning, and monitoring of cases of discrimination and to the provision of specialized assistance to victims of discrimination, GO no. 137/2000, Art. 19 para. (1) let. c) and d). 691 For a detailed analysis by types of discrimination, see Annex-Table 58. 692 GD no. 1194/2001 on the organization and functioning of the National Council for Combating Discrimination, Art. 2 para. (1). 693 The last project was carried out in 2015 and was aimed at providing training in the field of anti-discrimination, gender equality, and the rights of persons with disabilities to all staff responsible for European Structural and Investment Funds management and control within the Managing Authorities, Intermediate Bodies, Certification and Payment Authority, Audit Authority, and the Ministry of European Funds (at present, the Ministry of European Investments and Projects) (https://www.cncd.ro/proiecte/ formare-in-domeniul-antidiscriminarii-egalitatii-de-gen-si-al-drepturilor-persoanelor-cu-dizabilitati/). 339 Implementation and monitoring of the CRPD TABLE 15 Disability-related complaints examined by the National Council for Combating Discrimination, 2019 Complaints Ex officio Total received complaints Number of disability-related complaints 96 93 3 Number of disability-related complaints settled 88 85 3 Number of disability-related complaints settled by 18 15 3 ascertaining “rights violations” Number of fines applied for disability-related reasons 5 3 2 Total number of complaints examined by the NCCD 1,858 1,808 50 Source: NCCD. Since 2018, the role of the Ombudsman in protecting and monitoring the rights of persons with disabilities, especially of those with intellectual and psychosocial disabilities, has increased. The Ombudsman can notify itself of problems ex officio or can be contacted by a person with disabilities or by someone else with a complaint about a suspected violation of the rights or freedoms of persons with disabilities committed by a public administration authority. The Ombudsman is also entitled to initiate its own investigations by requesting from the public administration authorities any piece of information or documents necessary for the investigation and to question managers of the public administration authorities and any other officials who can provide the information necessary to settle the complaint. In 2019, the Ombudsman examined 174 complaints brought by persons with disabilities or related to violations of the rights of persons with disabilities.694, 695 The National Mechanism for the Prevention of Torture (NMPT),696, 697 which is a subordinate body of the Ombudsman, conducts visits, either pre-announced or unexpected, to detention facilities to verify their conditions and the treatment of people deprived of liberty. The NMPT liaises with the Subcommittee on Prevention of Torture (SPT)698 and coordinates information campaigns to prevent torture. In 2019, for the first time, the Ombudsman published two special reports on the rights of children and adults with psychosocial disabilities. The first was on compliance with human rights in psychiatric hospitals in Romania, and the other presented the findings of their investigations into the prescribing of psychotropic drugs to children in residential centers with 25 recommendations on how to improve the situation in residential centers for children and adults with disabilities and in psychiatric hospitals.699 The SPT recommended that the NMPT should focus not only on visits to detention facilities but also on other preventive activities, such as the development of an annual work plan that include all preventive activities, including commenting on draft legislation, awareness-raising activities, and the provision of training.700 694 Ombudsman (2019a). 695 In 2018, the Ombudsman registered 255 complaints, up from 215 in 2017 (https://avp.ro/index.php/activitatea-avp/rapoarte- anuale/). 696 The visit reports prepared as part of the torture prevention activity are endorsed by the Ombudsman. 697 In 2018, the NMPT conducted 14 visits to residential centers for disabled adults and 7 to psychiatric hospitals, while in 2017, it made 15 visits to residential centers for disabled adults and 6 to psychiatric hospitals (https://avp.ro/index.php/activitatea- avp/rapoarte-anuale/). 698 The Subcommittee on Prevention of Torture (SPT) was established by the Romanian government in accordance with the provisions of the Optional Protocol to the Convention against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment (OPCAT). OPCAT was adopted by the UN General Assembly in December 2002 and entered into force in June 2006. The SPT is composed of 25 independent and impartial experts from different backgrounds and different regions of the world. The members are elected by the States parties to OPCAT for a term of four years and may be re-elected only once. The SPT report that was prepared following the visit to Romania in May 2016 was published in August 2017, but no information about this report could be found on the NMPT/Ombudsman web page. 699 An analysis of the recommendations made by the National Prevention Mechanism following the visits can be found in Annex- Table 59. 700 For the SPT’s observations of their visit to Romania between May 3 and 12, 2016 and their recommendations for the State party, see OHCHR (2017: 6). 340 Implementation and monitoring of the CRPD The mandate of the Monitoring Council only covers institutionalized persons with disabilities and partially overlaps with the mandate of the NMPT. The purpose of the Monitoring Council is to verify the legal status of the presence of persons with disabilities in closed institutions and of the circumstances of deaths and to monitor compliance with human rights in closed institutions. This objective partially overlaps with that of the Ombudsman, through the NMPT.701 Unlike the NMPT and Ombudsman, the Monitoring Council has the express responsibility of notifying competent judicial bodies when there is any indication that the rights of persons with disabilities have been violated as a result of a criminal conduct. Moreover, it is responsible for filing a complaint, where appropriate, against non-prosecution decisions or dismissal of charges, as well as having the express prerogative to facilitate the access of NGOs and persons with disabilities during monitoring visits and to enable them to acquire the standing to bring proceedings. However, the reports published by the Monitoring Council contain no information on the presence or absence of persons with disabilities or NGOs protecting the rights of persons with disabilities during its monitoring visits.702 Because of the narrow mission of the Monitoring Council, and the very specific roles of the NCCD and the Ombudsman, the independent monitoring of the implementation of the CRPD as a whole is still incomplete. The Monitoring Council, as an independent mechanism, should follow closely the recommendations of the CRPD and of the CRPD Committee during its visits. The CRPD Committee has recommended that States parties: (i) stop investing in residential institutions and work with residents to find the best solutions for them to live in the community; (ii) promote independent living schemes, including personal assistance where required, to ensure that persons with disabilities can exercise their right to live independently and be included in their communities; (iii) develop community support services for persons with disabilities to ensure that they have the right to choose where to live, and with whom to live, on an equal basis with others; and (iv) ensure the involvement of organizations of persons with disabilities in the development of strategies and schemes for independent living that provide accessible community services, support, and facilities, including affordable and accessible housing.703 The results of the monitoring of residential facilities by the Monitoring Council conflict with the provisions of the CRPD. Since 2018, the Monitoring Council has produced 134 monitoring reports, but its monitoring visits focused more on the compliance of residential services with the standards704 than on the implementation of the dispositions of the CRPD that oblige the Romanian state to ensure that all persons with disabilities have the right to live independently in the community, are recognized as persons by law, and have access to justice. This can lead to a misinterpretation of the deinstitutionalization process that legitimizes the transfer of persons from large residential centers to smaller centers (trans-institutionalization) and allows the existing types of residential centers to continue in operation. Box 53 below provides examples of situations where the recommendations of the Monitoring Council contradicted the CRPD or the CRPD Committee’s recommendations in the following ways: During all of its monitoring visits conducted in 2019, the Monitoring Council’s recommendation was to deinstitutionalize beneficiaries only by transferring them to protected dwellings (which in effect constitutes transinstitutionalization) and not by integrating them into the community. 701 The CRPD recommendation in this regard is that the mandate of these institutions be different but also complementary. 702 According to an analysis of the activity report of the Monitoring Council for 2018 that was submitted to the Commission for Human Rights of the Senate, Romanian Parliament (CLR, 2018). 703 For example, the Committee Report on concluding observations on the initial report of Albania (CRPD Committee, 2019f). 704 The monitoring tool used in 2020 can be found at: https://www.consiliuldemonitorizare.ro/monitorizare/modele-documente/ 341 Implementation and monitoring of the CRPD It recommended renovation or construction works in all residential centers (including in large centers). It made no recommendation for any protected dwelling to deinstitutionalize beneficiaries by putting them in the care of services that would enable them to live independently in the community. Collaboration between the Monitoring Council, the coordination mechanism, and the focal points is weak, and persons with disabilities and/or their representative organizations have not been systematically involved in the monitoring visits. Although the law requires the Monitoring Council to collaborate with the coordination mechanism and the focal points to ensure the implementation of the Convention, there has been little collaboration in recent years. Some representatives of the focal points interviewed in 2019 did not even know the Council existed, while others had only met the Council’s representatives at a conference on human rights. According to the law, the Monitoring Council should facilitate the full involvement and participation of civil society, in particular of persons with disabilities and of the organizations representing them, in the monitoring process that it organizes,705 and it should include persons with disabilities as monitors to verify the observance of human rights.706 However, its monitoring reports do not include any information on the engagement of civil society, and the Monitoring Council’s website does not contain any way for persons with disabilities or relevant NGOs to register to participate in the monitoring visits. In addition, the website of the Monitoring Council does not allow for an easy navigation by persons with disabilities, and many existing documents are not accessible to persons with disabilities.707 Recommendations of the Monitoring Council on residential centers versus the BOX 53 recommendations of the CRPD Committee Recommendations of the Monitoring Council Recommendations of the CRPD Committee “It is very important that when local authorities “The Committee encourages the State party to decide to place and keep a disabled child or develop and implement a national framework adult in a placement or recovery center, the for the closure of residential institutions and to State should ensure with special rigor that these allocate the resources necessary for support placement conditions meet the specific needs services that would enable persons with generated by disability and take those measures disabilities to live in their communities. The specifically to ensure the effective protection of Committee recommends that the State party persons against abuse and ill-treatment by local take immediate action to ensure that persons authorities who are or should be aware of this.” with disabilities have a free choice as to where (Monitoring Council, 2018). and with whom they want to live, and that they are eligible to receive the necessary support regardless of their place of residence.” (CRPD Committee, 2013b). 705 The independent monitoring mechanism fully observes the principles with regard to the status of national institutions for the promotion and protection of human rights (Paris Principles); in other words, it does not include any government representatives, it has a budget appropriate to its functions, and it operates in close consultation with organizations representing persons with disabilities. 706 According to the provisions of the CRPD, Art. 16 para. (3). 707 All reports are first scanned and then converted into PDF format. 342 Implementation and monitoring of the CRPD Recommendations of the Monitoring Council Recommendations of the CRPD Committee “Recommendations: States parties should ensure that public or Renovation of the center, both the outside and private funds are not spent on maintaining, the inside, and planning of the space behind the renovating, establishing, or building existing building for outdoor activities. Customization or new institutions providing any form of of the wards according to the needs and institutionalization.” (CRPD Committee, 2017a, personalities of the beneficiaries. Setting up a Chap. B). lounge for cultural-educational-recreational activities that would contribute to the mental development of the beneficiaries and to the improvement of their life quality. Renovation and endowment of the kitchen as necessary in order to prepare the meals of the beneficiaries.” (Report on the visit to NRRC no. 1 Băbeni, 96 beneficiaries at the time of the visit, 2018). We recommend taking steps to prioritize the “It is not ‘just’ about living in a particular deinstitutionalization of disabled adults in building or setting, it is, first and foremost, residential structures by transferring them to about losing personal choice and autonomy protected dwellings (with mandatory access as a result of the imposition of certain life to the services provided in a day center, as and living arrangements. Neither large-scale well as to community resources and facilities: institutions with more than a hundred residents health, education, work, culture, leisure), as nor smaller group homes with five to eight well as organizing trips outside the county and individuals, nor even individual homes can be facilitating the beneficiaries’ access to shows, called independent living arrangements if they events.” (Report on the visit conducted to NRRC have other defining elements of institutions or Galda de Jos, 268 beneficiaries at the time of the institutionalization. Although, institutionalized visit, 2019). settings can differ in size, name, and setup, there are certain defining elements, such as: obligatory sharing of assistants with others [...], [This conclusive recommendation can be found lack of choice over whom to live with, rigidity in all the monitoring reports between 2019 and of routine irrespective of personal will and 2020 for residential centers, except for protected preferences, identical activities in the same dwellings.] place for a group of persons under a certain authority, a paternalistic approach in service provision.” (CRPD Committee, 2017a, Chap. II. A, para. (16) let. c)). None of the independent mechanisms seems to have systematically promoted the rights of persons with disabilities. The first role of independent mechanisms is to promote the CRPD, including by participating in the drafting, translating, publication, and dissemination of the CRPD Committee’s General Comments.708 These promotional activities are essential to ensure that society is familiarized with the values and obligations of the CRPD. There is no evidence that any of the autonomous State human rights authorities, the NCCD, the Ombudsman, or the Monitoring Council have systematically carried out this promotion role.709 708 The CRPD Committee encourages independent monitoring bodies to participate in the general discussion days organized by the Committee and in the consultation processes related to the preparation of the Committee’s general comments. The Committee also recommends that independent monitoring bodies should encourage the authorities of the relevant States parties to translate, where necessary, and to disseminate the Committee’s general comments in accessible formats and through alternative and augmentative methods and means of communication. It also encourages independent monitoring bodies to use the Committee’s general comments in their national efforts to promote and protect the rights of persons with disabilities. 709 The latest piece of news posted on the institution’s website dates to April 4, 2018 and concerns a meeting held on October 16, 2017 between the Commission on Equal Opportunities within the Romanian Senate and the Monitoring Council. There are also two press releases from December 2018 and December 2019 on the occasion of the International Day of Persons with Disabilities. The only activity report published on the Monitoring Council’s website is for 2018, which lists 19 meetings and conferences attended by representatives of the Monitoring Council during 2017 and 2018, none of which were initiated by the Council. 343 Implementation and monitoring of the CRPD Independent mechanisms cover a very limited segment of the protection and monitoring of human rights from the perspective of the CRPD. According to the CRPD, their role is to conduct systematic activities aimed at protecting the rights of persons with disabilities and to investigate alleged human rights violations by appealing to quasi-judicial powers to supplement their judicial protection.710, 711 In practice, the protection of human rights includes the provision of mediation services and assisting victims during litigation or when submitting amicus curiae. Independent mechanisms should also carry out systematic monitoring of the rights of persons with disabilities in both announced and ad hoc site visits of institutions of confinement.712 The Monitoring Council plays no role in monitoring the implementation of the CRPD, other than monitoring the situation in residential facilities. Examples of activities to promote the CRPD should be carried out by BOX 54 independent mechanisms 1. “Provide detailed analyzes of the rights and obligations set out in the CRPD to policymakers 2. Organize trainings on the CRPD for policymakers, including for those working in the focal points. 3. Engage with governmental departments and help them to mainstream the rights of persons with disabilities into their policies. 4. Provide information on the States parties’ reporting obligations and remind policymakers thereof. 5. Organize training that provides disability-appropriate support on the CRPD for persons with disabilities on how to advance their meaningful participation in policymaking, build their capacity for self-advocacy, and take action to protect their rights. 6. Ensure that education systems integrate disability into human rights education. This includes encouraging schools to disseminate the CRPD in adapted formats and language, including sign language, accessible to children with disabilities, and encouraging law faculties and human rights institutes to include the rights of persons with disabilities in curricula, teaching, and research. 7. Ensure training for lawyers and judges to apply the CRPD in order to create legal precedents or clarify or improve legislation. 8. Review and disseminate the jurisprudence (general comments, statements and decisions) of UN Treaty bodies, including the UN Committee on the Rights of Persons with Disabilities; translate these into an understandable language for policymakers and persons with disabilities; and encourage Government to implement the recommendation or enforce the judgment, to avoid new recourse to UN Treaty bodies. 9. Produce and distribute material on the complaints procedure under the Optional Protocol to the CRPD, as well as the complaints procedures under other existing legal instruments 10. Organize campaigns and other awareness-raising activities about the CRPD in the media.” Source: MDAC (2011: 42-43). 710 More examples of protection activities can be found in MDAC (2011: 43-44). A quasi-judicial power refers to the power given to the commissions established by law or to autonomous administrative authorities to determine the rights of those who appear before it and to investigate whether those rights have been violated. As an example, Texas courts recognize six relevant competences to determine whether a body has exercised quasi-judicial power or not: (i) the competence to exercise judgment and discretion; (ii) to listen and to determine or to establish facts and to decide; (iii) to issue binding orders and decisions; (iv) to affect the personal or property rights of individuals; (v) to investigate witnesses, to compel the presence of witnesses and to hear disputes concerning matters at a hearing; and (vi) the power to enforce decisions or impose sanctions (law of quasi- judicial power and legal definition, USLegal.com). 711 There are also quasi-judicial institutions, such as the NCCD, that, in practice, may find that certain acts are discriminatory and may subsequently issue administrative sanctions (warnings or fines). 712 More examples of monitoring activities can be found in MDAC (2011: 44-45). 344 Implementation and monitoring of the CRPD Recommended measures The following measures are recommended: The National Council for Combating Discrimination (NCCD) to launch information 1 campaigns about discrimination against persons with disabilities713 and the NCCD’s role in fighting it. 2 The NCCD to establish partnerships with different organizations representing persons with disabilities in order to publicize its role in settling cases of discrimination. 3 The NCCD to include in its annual reports disaggregated data on discrimination against persons with disabilities in all of the relevant fields of the CRPD. 4 The Romanian Ombudsman to carry out information campaigns about its role in defending and promoting the rights of persons with disabilities. 5 The Council for Monitoring the Implementation of the Convention (Monitoring Council) and the National Mechanism for the Prevention of Torture (NMPT) to ensure that organizations representing persons with disabilities and those representing civil society are included in monitoring visits on the basis of transparent summoning procedures. The Parliament to amend the law in order to extend the mandate of the Monitoring 6 Council from simply monitoring residential institutions to promoting, protecting, and monitoring the implementation of the CRPD as a whole in close cooperation with persons with disabilities and their representative organizations. The independent mechanisms to regularly assess and issue reports on the 7 activities of the CRPD Implementation coordination mechanism and the focal points. 713 With specific examples of typical cases of discrimination in all the eight dimensions of the NSRPD 2021-2027. 345 Implementation and monitoring of the CRPD 9.3 9.3 The limited The participation limited of persons participation with of persons with SHORT IN and their disabilities and disabilities representative organizations in their representative monitoringin organizations the the monitoring process process What are the rights of persons with disabilities? Persons with disabilities and their organizations must be involved in monitoring the measures taken to ensure that the rights of persons with disabilities are observed in accordance with the requirements of the CRPD. The government must take into account the opinions of persons with disabilities about the monitoring of the observance of the CRPD. It must support persons with disabilities and their organizations in formulating well-informed opinions that best represent their own interests and prioritize them over all other opinion on this subject. Persons with disabilities and their organizations can prepare their own “alternative country report” containing their own views of the extent to which the rights of persons with disabilities are being observed in Romania. They can submit this report to the UN Committee on the Rights of Persons with Disabilities (CRPD Committee), which is a body of independent experts that monitors how the CRPD is implemented by the signatory states. What is the situation in Romania? Neither the organizations of persons with disabilities nor other human rights organizations have submitted any “alternative country report” to date. 346 Implementation and monitoring of the CRPD The state has not provided organizations of persons with disabilities with support that would enable them to get involved in monitoring compliance with the CRPD. Only five nongovernmental organizations of persons with disabilities are funded directly from the state budget. The state has not given persons with disabilities and their organizations any support that would help them to become better informed, get more involved in defending their own rights, and to formulate opinions. What are the causes of this problem? Because the government has not invested in or worked enough with organizations of persons with disabilities in the past, it does not have any expectation that these organizations should be more involved. What are the key changes that need to be made? The NARPDCA must invest in persons with disabilities and their organizations to enable them to prepare informed opinions to influence any measures taken related to persons with disabilities. The Monitoring Council must ensure that persons with disabilities and their organizations are trained to be able to monitor compliance with the requirements of the CRPD in Romania. 347 Implementation and monitoring of the CRPD 9.3 The limited participation of persons with disabilities and their representative organizations in the monitoring process Persons with disabilities and their representative organizations must be fully involved in the CRPD monitoring process. The participation of persons with disabilities in the implementation and monitoring of the CRPD is one of the basic principles of the Convention as set out in Art. 33. Consequently, the government is required to pay particular attention to the views of persons with disabilities and of the organizations that represent them and ensure that they are involved in the process of monitoring whether the Convention’s obligations are being put into practice in Romania. States parties are required to submit a report to the CRPD Committee within two years after ratification and every four years thereafter. Civil society, especially organizations of persons with disabilities, are also encouraged to submit alternative reports (sometimes called shadow or parallel reports) to the CRPD Committee as a way of verifying or addressing any gaps in the official government report.714 Of the 165 countries that have ratified the CRPD, 40 countries have so far submitted official State reports, while 50 have submitted reports prepared by civil society,715 with some countries having submitted several such reports. So far, no report has been submitted by the representatives of Romania’s civil society. The organizations representing persons with disabilities have limited resources to play an active role in the civil society. Only five non-governmental organizations are funded directly from the state budget.716 Although the NARPDCA has the authority to fund NGO projects, it has not financed any advocacy activities.717 Romania has not invested in increasing the capacity of persons with disabilities or organizations so that they can fulfill their role effectively. According to Art. 29, Romania must actively promote an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs and must encourage their participation in public affairs. In order to achieve this, it is essential that persons with disabilities and the organizations representing them have the necessary capacity and expertise718 to contribute to the monitoring of the implementation of the CRPD on an equal basis with others. This type of expertise can be developed in a number of different ways, including through seminars, conferences, and training courses. As there will always be individuals or organizations just starting out in public life, these resources should be permanently available and should combine both specific topics of maximum interest to civil society and introductory topics on the CRPD and the 714 CRPD, Art. 35. 715 There are also cases in which reports have been prepared by international organizations (Shettle et al., 2018). 716 According to Law no. 448/2006 on the protection and promotion of the rights of persons with disabilities, republished, as subsequently amended and supplemented, the NARPDCA may grant amounts from the State budget, through the MLSP budget, according to the annually approved revenue and expenditure budgets, to the following non-governmental organizations: the Romanian Association of the Blind, the Association of Blind War Invalids in Romania, the Romanian National Association of the Deaf, the National League of Handicraft Cooperative Organizations with Disabled Employees, and the Romanian National Disability Council. The budget allotted in 2019 was RON 7,915,000., Amounts granted to NGOs from the State budget are referred to under Heading 59.11. 717 The NARPDCA can finance up to 98 percent of the costs of the projects of non-governmental organizations active in the field of protection for persons with disabilities by derogation from the provisions of Law no. 350/2005 on the regime of non-repayable funding from public funds allocated for non-profit activities of general interest, as subsequently amended and supplemented (Law no. 448/2006, Art. 99). 718 “Organizational capacity, knowledge, and expertise means: (i) skills to participate in monitoring activities; (ii) skills to engage in policy formation and implementation; (iii) the confidence and skills to participate in meetings and challenge exclusion; (iv) knowledge about human rights, including the CRPD; (v) knowledge about how to exercise those rights; (vi) knowledge about who the key people with respect to domestic implementation of the CRPD; and (vii) an understanding of the relevant policy issues and how policy is formed” (MDAC, 2011: 24). 348 Implementation and monitoring of the CRPD monitoring of its implementation. 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World Bank (2019) Report on the Evaluation of the Content and Implementation of the Current NSPD, 2016–2020. 362 References 211. Yazbeck, M., McVilly, K., and Parmenter, T. R. (2004) “Attitudes Toward People with Intellectual Disabilities”. Journal of Disability Policy Studies, 15(2): 97–111. Available at: https://journals. sagepub.com/doi/10.1177/10442073040150020401 212. Ziv, N. (2007) “Witnesses with Mental Disabilities: Accommodations and the Search for Truth”. Disability Studies Quarterly, 27(4). Available at: http://dx.doi.org/10.18061/dsq.v27i4.51 363 Annexes Annexes Annex 1. Relevant institutional actors for each domain of the Diagnosis Annex 1.1: Relevant institutional actors for the “Accessibility and mobility” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. The Authority coordinates the transposition of the provisions of the Directive (EU) 2019/882 of the European Parliament and of the Council of April 17, 2019 on accessibility requirements for products and services (GD no. 1002/2019, Art. 4 para. (2) let. c)). Local public authorities (LPAs) are local, communal, and city councils, as deliberative authorities, and mayors, as executive authorities. Local authorities issue construction permits. For public use buildings, built with public funds, or for private buildings for which a request is made in this regard from persons with disabilities who are residents, the authorization must be granted, according to Law no. 488/2006, Art. 63 of “only under the conditions of observing the legal provisions in the field so as to allow unrestricted access of persons with disabilities.” The State Inspectorate in Constructions (SIC) is a public institution with legal personality, subordinated to the Ministry of Development, Public Works and Administration. Within the Inspectorate there are regional and county inspectorates in constructions, units without legal personality. The Inspectorate exercises state control over the unitary application of legal provisions in the field of construction quality, in all stages and components of the construction quality system, identifies contraventions, applies sanctions and measures provided by law, and orders the cessation of improperly performed works (Law no. 10/1995, Art. 33). The National Authority for Payments and Social Inspection (NAPSI) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. NAPSI, through the county/Bucharest agencies for payments and social inspection, establishes, grants, and pays social assistance benefits (including benefits for persons with disabilities), manages the amounts intended to support social services, and ensures the evaluation, monitoring, and control regarding the compliance with specific legislation in the field of social assistance. The social inspection activity includes thematic inspection missions, evaluation/monitoring missions, and unannounced inspection missions with public authorities, social assistance providers, and service providers in general. Respecting the right of persons with disabilities to an accessible environment is one of the three components of the control activity (along with social assistance benefits and social assistance services). The National Authority for Administration and Regulation in Communications (NAARC) is an autonomous public authority with legal personality, financed entirely from its own revenues, under parliamentary control. The Authority implements sectoral policies developed by the Ministry of Transport, Infrastructure and Communications (MTIC) in the field of electronic communications, audiovisual communications, and postal services. Decision no. 1012/2019 of NAARC establishes a series of measures for the distributors of electronic communication services, in order to facilitate the access of users with disabilities to fixed and mobile telephone and internet services. The National Audiovisual Council (NAC) is the only regulatory authority in the field of audiovisual programs, an autonomous public institution under parliamentary control, led by a council of 11 members appointed by Parliament. The Audiovisual Law no. 504/2002 that regulates the operation of the NAC establishes a minimum daily duration of 30 minutes of broadcasting with sign language interpretation for both national and local channels. 364 Annexes The Authority for the Digitization of Romania (ADR) is a structure with legal personality within the working apparatus of the government and under the coordination of the Prime Minister, with the role of realizing and coordinating the implementation of public strategies and policies in the field of digital transformation and information society. The Authority exercises control regarding the observance of the provisions of GEO no. 112/2018 on the accessibility of websites and mobile applications of public sector bodies, approved by Law no. 90/2019 about the obligations imposed by the normative acts issued in application of the aforementioned emergency ordinance, within the limits of the legal capacity of monitoring or verification. The Ministry of Transport, Infrastructure and Communications (MTIC) is a specialized body of the central public administration. It elaborates and submits for approval the legislative framework regarding the transportation field, the administration, pricing, and use of the transport infrastructure and making this infrastructure available to the users, according to the law, within the limit of its field of activity. Together with the Ministry of Labor and Social Protection, it regulates the way of granting free transport to persons with disabilities. The General Inspectorate for Emergency Situations (GIES) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Internal Affairs. The county/Bucharest professional emergency services are coordinated by the prefect, at county/ Bucharest level, and by the mayor, at the level of communes, cities, and other municipalities (according to GEO no. 21/2004). GIES carries out a multitude of prevention and intervention activities for firefighting, extrication, and the Mobile Emergency Service for Resuscitation and Extrication first aid, rescuing people, and limiting the damage caused by floods, landslides, seismic movements, epidemics, epizootics, extreme snowfall, drought, assistance to people in critical situations, intervention in technological, radiological, nuclear, or biological accidents, or other types of natural or man-made disasters. The Special Telecommunications Service (STS) is controlled by the Romanian Parliament through the commissions for defense, public order, and national security. STS activity is organized and coordinated by the Supreme Council of National Defense. Among others, it manages the Single National Emergency Call System 112. The 113 SMS service is the solution implemented by STS in order to support people with hearing and/or speech impairments who want to call the 112 emergency service. Annex 1.2: Relevant institutional actors for the “Effective protection of the rights of persons with disabilities” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. NARPDCA was designated by Law no. 221/2010 as a coordinating mechanism for the implementation of the CRPD, with the role of inter-institutional coordination and cooperation, including by ensuring the coordination of the Contact Points and the harmonization of data transmitted by them. The Ministry of Internal Affairs (MIA) establishes, according to the law, measures for the protection of fundamental human rights and freedoms, as well as public and private property. The Directorate for Persons Record and Databases Management, subordinated to MIA, updates the National register of persons records, which also includes information regarding persons placed under judicial interdiction. The Romanian Police, subordinated to MIA, exercises, among others, attributions regarding the defense of the fundamental rights and freedoms of persons with disabilities, as well as the prevention and detection of crimes. 365 Annexes The Ministry of Justice contributes to the proper functioning of the judicial system. It ensures the conditions for the administration of justice as a public service, and the defense of the rule of law and civil rights and freedoms. More specifically, the Ministry of Justice: (i) ensures the functioning of the Contact Point for the implementation of the CRPD; (ii) assesses, under certain conditions, disability-specific legislation and proposes legislative changes in its area of competence, in terms of constitutionality and compatibility with international conventions; (iii) coordinates the judicial statistics activities of courts and prosecutor’s offices regarding the access to justice, including for persons with disabilities; and (iv) enters into partnerships with professional organizations for legal professions, institutes for initial and continuous professional training for legal professions, in order to develop and promote public policy strategies or programs. The Public Ministry represents society’s general interests and defends the rule of law, as well as the rights and freedoms of citizens. The Public Ministry exercises its attributions through prosecutors constituted in prosecutor’s offices. The prosecutor, as a representative of the social, general, and public interest, also ensures the protection of the rights and freedoms of citizens, including persons with disabilities deprived of freedom in residential centers or psychiatric hospitals, who may be victims of abuse or subjected to ill, inhumane, or degrading treatments. Prosecutors have an active role in the process of placing the person with disabilities under judicial interdiction and, as an exception, they have the right to exercise civil action when the legal representative of the person placed under judicial interdiction does not exercise it. The Ministry of Health is the central authority in the field of public health care, having among its responsibilities the coordination and control of the implementation of policies, strategies, and programs in the field. The National Center for Mental Health and the Fight Against Drugs operates under the ministry, ensuring the coordination, implementation, and evaluation of mental health policies at national level. The Center is primarily responsible for developing mental health policies and programs, training psychiatric staff, collecting and interpreting data on mental health and evaluating mental health services, maintaining the National Psychiatric Register, and implementing, monitoring, and coordinating the national mental health program. The National Administration of Penitentiaries (NAP) is a public institution of national interest subordinated to the Ministry of Justice. NAP organizes the activities related to the execution of sentences and custodial measures pronounced by the courts, in the units under its subordination, organizes the educational, psychological and social assistance activities carried out with prisoners, interned persons, and pre-trial detainees, including those with a disability, from the units under its subordination, and establishes the strategy and ways to achieve them. The Superior Council of Magistracy (SCM) is the constitutional body that ensures the observance of the law and of the competence and professional ethics criteria in the professional career of judges and prosecutors through the following activities: (i) draws up studies on the need to develop or amend regulations in the field of justice, as well as on legal issues arising in law enforcement; (ii) organizes and directs the activity of judicial statistics in the courts; (iii) collaborates with the courts, the prosecutor’s offices attached to them, and the Ministry of Justice, for a sound good administration and the continuous improvement of the judicial statistics module included in the ECRIS application, and of the other judicial statistics applications; and (iv) makes proposals to improve the judicial statistics module. In partnership with the Ministry of Justice and RNUBA, SCM contributes to strengthening the legal aid system, setting up pilot counseling and information centers dedicated to vulnerable groups of the population, and organizing information campaigns for the population, especially vulnerable groups, on the right to legal aid and concrete ways to access these services. The Constitutional Court of Romania (CCR) is the only authority of constitutional jurisdiction in Romania, independent of any other public authority. The CCR, among other responsibilities, has the role of ruling on the constitutionality of laws before their promulgation, on the constitutionality of treaties or other international agreements, and of deciding on exceptions of unconstitutionality regarding laws and ordinances raised before the courts. On July 16, 2020, the Plenum of the Constitutional Court issued the decision establishing that the provisions of Art. 164 para. (1) of the Civil Code on the judicial interdiction of adults are unconstitutional. 366 Annexes The Romanian National Union of Bar Associations (RNUBA) is made up of all Romanian bars. RNUBA: (i) organizes the National register of legal aid based on the registers drawn up by bars and performs controls regarding the legal aid granted; (ii) elaborates drafts for normative acts in the field of legal aid, proposing them to the Ministry of Justice for promotion; and (iii) establishes, together with the Ministry of Justice, statistical indices, keeps statistical records of the legal aid system, and analyzes the information necessary for the proper planning and coordination of the legal aid system. The National Institute for the Training and Development of Lawyers (NITDL) is organized and operates under the authority of the RNUBA Council. The Institute develops the professional training strategy at the beginning of the profession, and the continuous training strategy at the bar level. The National Institute of Magistracy (NIM) is the public institution under the coordination of the SCM. The Institute provides initial and continuous professional training for judges and prosecutors, as well as training of trainers, including in the field of protection of the rights of persons with disabilities. The National Union of Public Notaries in Romania (NUPNR) is the professional organization of public notaries at the national level, which manages the public notary activity in Romania. The public notary provides a social function in all important moments of life, from engagement and marriage to the purchase of a property, in entrepreneurial activity and in the field of companies, in the dissolution of marriage and the division of patrimony, to the dispositions of last will and in the matter of inheritances. In all these notarial operations, the notary has the legal obligation to protect and assist people with disabilities. Guardianship Authority Services (GASs) operate within mayoralties and have responsibilities regarding the organization of guardianship, the supervision, control, and guidance regarding the way to carry out the activity of protecting the persons with disabilities who have a court decision for being placed under interdiction or are at risk of being placed under interdiction, and for whom the courts or notaries request a social inquiry report. Annex 1.3: Relevant institutional actors for the “Employment” domain The Ministry of Labor and Social Protection (MLSP) implements national policies in the field of labor, family, social protection, and the elderly, fulfilling the role of state authority through strategy and planning, regulation, synthesis, coordination, monitoring, inspection, and control. Two of its fields of activity are the employment and vocational training, and the social protection of persons with disabilities. In these areas, the ministry develops, monitors, controls, and evaluates the implementation of public policies, including policies and strategies in the field of social economy and the support for social enterprises. The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of the protection and promotion of the rights of persons with disabilities. It also manages databases in the field. It also authorizes protected units and monitors their activity. The National Agency for Employment (NEA) implements policies and strategies developed by MLSP regarding employment and vocational training of persons looking for a job. One of its main objectives is to increase the employment opportunities and social inclusion of categories of people (including people with disabilities) who have difficulty finding employment through services and active employment incentives. Among other tasks, it also manages the unemployment insurance budget. 367 Annexes County Employment Agencies (CEAs) subordinated to NEA have among their responsibilities: (i) providing services in order to prevent unemployment and stimulate employment; (ii) advising and guiding job seekers and connecting employers with them; (iii) organizing and providing vocational training services for the unemployed; and (iv) offering accreditation to providers of specialized services that stimulate employment. General Directorates of Social Assistance and Child Protection (GDSACPs) represent public institutions with legal personality established under county councils/local councils of the sectors of Bucharest in order to ensure the application of social policies in the field of the protection of persons with disabilities and other persons, groups or communities in social need, with a role in the administration and provision of social assistance benefits and social services. Among other responsibilities, they ensure the assessment of the individual needs of persons with disabilities and propose individual programs for their rehabilitation and social integration. The Ministry of Justice contributes to the proper functioning of the judicial system. It ensures the conditions for the administration of justice as a public service and the defense of the rule of law and civil rights and freedoms. Its responsibilities also include evaluating the legislation in its area of competence, from the point of view of constitutionality, and proposing solutions for legislative improvement. The Ministry of Finance contributes to the elaboration and implementation of the strategy in the field of public finances and to the exercise of the general administration of public finances. The Ministry elaborates, monitors, and evaluates the public policies whose implementation is achieved by adopting normative acts in the field. The National Agency for Public Procurement (NAPP) has as a fundamental role in the formulation, promotion, and implementation of public procurement policy. To this end, it develops policies and legislation in this area. The Ministry of Economy, Entrepreneurship and Tourism (MEET) is a specialized body of the central public administration, subordinated to the government, which applies the strategy and government program in the fields of economy, industrial policies, competitiveness, small and medium enterprises, business environment, entrepreneurship, and others, in accordance with market economy requirements and in order to stimulate the initiative of economic operators. The Ministry initiates, elaborates, and promotes draft normative acts, and coordinates and controls their application in the fields subordinated to it. The Ministry of Health is the central authority in the field of public health care, having among its responsibilities the coordination and control of the implementation of policies, strategies, and programs in the field. The Labor Inspectorate (LI) ensures the exercise of control in the fields of labor relations, occupational safety, and health and market surveillance. Regarding occupational safety and health, this institution controls, coordinates, and methodologically guides the application of legal provisions. The Ministry of Investments and European Projects (MIEP) has the role of mediating the access of Romanian citizens to European funds and coordinates at national level the policy in the field of Structural and Investment Funds. In this capacity, the Ministry develops strategies, policies, programs, and plans for its areas of activity. 368 Annexes Annex 1.4: Relevant institutional actors for the “Social protection” domain The Ministry of Labor and Social Protection (MLSP) implements national policies in the field of labor, family, social protection, and the elderly, fulfilling the role of state authority through strategy and planning, regulation, synthesis, coordination, monitoring, inspection, and control. In the field of social protection, MLSP develops the legislative framework, ensures the regulation, coordination, planning, monitoring, and evaluation of social protection policies and measures. MLSP also has specific roles regarding the national social assistance system: it develops the legislative framework regarding the granting of social assistance benefits and social services, as well as those related to the organization, functioning, and development of the national social assistance system; finances the benefits of social assistance, as well as programs for the development and sustainability of social services provided from its own budget; collects and analyzes data at national level on poverty and social exclusion; develops cost standards for social services and monitors public providers’ compliance with them; elaborates the criteria, performance indicators, and quality standards regarding social services, the accreditation/re-accreditation of providers and the social services granted by them, monitors and controls the observance of legal provisions regarding quality assurance in the field; monitors the implementation of strategies of the local public administration authorities regarding the development of social services; methodologically coordinates the activity of public social assistance services at territorial level; and guides and monitors the activity of the authorities and institutions with attributions in the field of social assistance, as well as of the public and private providers of social services. The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. The National Agency for Payments and Social Inspection (NAPSI) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. NAPSI, through the county/Bucharest agencies for payments and social inspection, establishes, grants, and pays social assistance benefits (including benefits for persons with disabilities), manages the amounts intended to support social services and ensures the evaluation, monitoring, and control regarding the compliance with specific legislation in the field of social assistance. The National House of Public Pensions (NHPP) is the public institution, under the authority of MLSP, which provides pensions and other social benefits, through territorial pension houses, as well as a series of compensatory indemnities, established by special laws. NHPP and sectoral pension houses, through the National Institute of Medical Expertise and Work Capacity Recovery and the central medical-military expertise commissions of the Ministry of National Defense, the Ministry of Internal Affairs, and the Romanian Intelligence Service, as appropriate, organize, guide, and control the activity regarding medical expertise and the recovery of work capacity. The assessment of work capacity, in order to establish the degree of invalidity, is made upon request by doctors within NHPP who are specialized in the medical expertise of work capacity, or by the medical-military expertise commissions attached to the hospitals in the national defense, public order, and national security system. The National Agency for Employment (NEA) implements policies and strategies developed by MLSP regarding the employment and vocational training of persons looking for a job. One of its main objectives is to increase the employment opportunities and social inclusion of categories of people (including people with disabilities) who have difficulty finding employment through services and active employment incentives. Among other tasks, it also manages the unemployment insurance budget. General Directorates of Social Assistance and Child Protection (GDSACPs) represent public institutions with legal personality established under county councils/local councils of the sectors of Bucharest in order to ensure the application of social policies in the field of protection of persons with disabilities and other persons, groups, or communities in social need, with a role in the administration and provision of social assistance benefits and social services. Among other responsibilities, they ensure the assessment of the individual needs of persons with disabilities and propose individual programs for their rehabilitation and social integration. 369 Annexes The Complex Evaluation Service (CES) within the GDSACP is a department whose role is to identify and evaluate children with disabilities who need a disability certificate or for whom access to habilitation and rehabilitation services is required. The identification takes place following requests from parents or legal representatives, referrals from the public social assistance service, and specialists who come into contact with children with disabilities, as well as ex officio notifications. The Child Protection Commission (CPC) is the specialized body, without legal personality, of the County Council, respectively of the Local Council within each sector of Bucharest, with decisional activity regarding the protection and promotion of children’s rights. In the field of children with disabilities, the CPC has the following main attributions: establishes the classification of children with disabilities in a certain degree of disability and issues the disability certificate; approves the habilitation-rehabilitation plan of the child with disabilities in the situation of having established another degree of disability compared to the proposal of the complex evaluation service; informs in writing the management of the institutions represented by the members of the Commission regarding the difficulties encountered in establishing special protection measures for children and the need to develop social, educational, and health services for children in order to identify solutions. CPC members are representatives of the main public institutions at county/ Bucharest sector level (College of Physicians, School Inspectorate, CAPSI, GDSACP), as well as representatives of civil society organizations. The Complex Evaluation Service for Adults with Disabilities (CESAD) is a department within the GDSACP that performs the complex evaluation/re-evaluation of adults requesting a disability certificate, at its own headquarters or at the person’s home. CESAD comprises physicians, psychologists, social workers, and psychopedagogues. The service performs medical evaluations/ re-evaluations according to the official criteria for classification in a certain degree of disability and proposes certification/non-certification, respectively, maintaining the certification for the current degree and type of disability. The service establishes the individual service plan together with the person with disabilities; handles the files of the person with disabilities requesting a protection measure; performs information activities about the rights and obligations of persons with disabilities; and provides activities and counseling services for persons with disabilities and their families. The Commission for the Assessment of Adults with Disabilities (CAAD) is the specialized body, without legal personality, subordinated to the county councils, respectively to the local councils of the sectors of Bucharest, which carries out the decisional activity in the field of certifying persons’ degree and type of disability, as well as that of promoting the rights of persons with disabilities. Specifically, the main responsibilities of the Commission for evaluation are the following: (i) establishes the classification of the adult in a certain degree of disability; (ii) establishes, as the case may be, the professional orientation of the adult with disabilities, respectively their work capacity; (iii) establishes protection measures for the adult with disabilities, according to the law; (iv) informs the adult with disabilities or his/her legal representative of the protection measures established; (v) resolves the applications regarding the certification as professional personal assistant; and (vi) promotes the rights of persons with disabilities in all the activities it undertakes. Public Social Assistance Services (PSASs) are specialized structures organized at the level of municipalities, cities, and communes, responsible for identifying and solving the social problems of the population. PSAS have the following main responsibilities: managing and providing social benefits, providing social services according to the needs identified locally, assessing the situation of persons with disabilities, identifying risk situations, establishing measures to prevent and reintegrate people into their natural family environment and into the community; and providing advice and information to persons with disabilities on the rights and services they can access. PSAS also carry out the social inquiry necessary for persons with disabilities to be granted the certificate for their degree and type of disability. Social service providers (SSPs) for persons with disabilities can be public or private. Public providers are mainly GDSACP and PSAS, but also public institutions that perform social functions (such as hospitals, penitentiaries or schools). Private providers can be of three types: non-profit (nongovernmental organizations/associations and foundations/cults), for-profit (companies, authorized individuals, professionals with the right of free practice), and informal (family, volunteers). The most common social services in the field of disability are: day centers, residential care and/or recovery centers, habilitation and rehabilitation centers (day, outpatient), support services for access to the labor market, sheltered housing, and respite services (very few of the latter being available in Romania). 370 Annexes The personal assistant of the person with disabilities is the person who provides assistance and care to the child or adult with a severe disability, based on the individual program of recovery, readaptation, and social reintegration of the person with disabilities, developed by the complex evaluation commissions at GDSACP. The professional personal assistant is a certified individual who provides care and protection in their home, for the adult with a severe or accentuated disability, as well as ensuring conditions for the involvement of the person with disabilities in independent living activities and supporting the exercise of all their civil rights. The activity of the professional personal assistant is carried out based on an individual employment contract, which has a special character, specific to the protection of the adult with a severe or accentuated disability, concluded with GDSACP or private social service providers, accredited by law. Annex 1.5: Relevant institutional actors for the “Social services and independent living” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. Among others, the Authority works on the development of family-type alternatives to the institutionalized protection of persons with disabilities, respectively for the diversification of services in the community. General Directorates of Social Assistance and Child Protection (GDSACPs) represent public institutions with legal personality established under county councils/local councils of the sectors of Bucharest in order to ensure the application of social policies in the field of protection of persons with disabilities and other persons, groups or communities in social need, with a role in the administration and provision of social assistance benefits and social services. The GDSACP is the largest provider of social services at county level. In the field of disability, the GDSACP has residential and day services, and recovery centers for children and adults with disabilities. GDSACP contributes significantly to the realization of the right of persons with disabilities to live in the community, through the adequate construction of social services within the community and by providing case management that contributes to social inclusion and increasing the quality of life of persons with disabilities. The Commission for the Assessment of Adults with Disabilities (CAAD) is the specialized body without legal personality, subordinated to the county councils, respectively to the local councils of the sectors of Bucharest, which carries out the decisional activity in the field of certifying persons’ degree and type of disability, as well as that of promoting the rights of persons with disabilities. The Commission elaborates the Individual Rehabilitation and Social Integration Program, which specifies the activities and services that the adult with disabilities needs in the process of social integration. The National Agency for Employment (NEA) implements policies and strategies developed by MLSP regarding the employment and vocational training of persons looking for a job. One of its main objectives is to increase the employment opportunities and social inclusion of categories of people (including people with disabilities) who have difficulty finding employment through services and active employment incentives. Local Employment Agencies have an active role in helping persons with disabilities integrate into the labor market, by providing individualized counseling services, conversion, reconversion, and socio-professional insertion programs, so as to contribute to the realization of the right of the person to perform an activity with significance and social utility, for a dignified and fulfilled life. 371 Annexes Local public authorities (LPAs) are local, communal, and city councils, as deliberative authorities, and mayors, as executive authorities. LPAs are among the most important actors in the development of services that support the independent living of persons with disabilities in the community. To support this goal, public authorities are responsible for developing medium and long-term strategies and annual social service development plans, in line with local needs assessment and based on relevant national strategies. LPAs help support persons with disabilities to live in the community by making the environment and local transport services more accessible, by developing the stock of social housing and the allocation criteria designed to facilitate the rental of housing by persons with disabilities at reasonable prices. The National Agency for Payments and Social Inspection (NAPSI) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. NAPSI, through the county/Bucharest agencies for payments and social inspection, establishes, grants, and pays social assistance benefits (including benefits for persons with disabilities), manages the amounts intended to support social services and ensures the evaluation, monitoring, and control regarding compliance with specific legislation in the field of social assistance. The agency also has an important role in monitoring social services for persons with disabilities, contributing to maintaining their quality, in order to prevent and limit situations of marginalization and social exclusion. Annex 1.6: Relevant institutional actors for the “Education” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. The Ministry of Education is a specialized body of the central public administration, which operates under the government, with a synthesis and coordination role in the field of education and vocational training. The Ministry designs, substantiates, and implements national strategies in the field of education and vocational training, directly or through subordinate institutions. County School Inspectorates (CSIs) and the Bucharest Municipality School Inspectorate are decentralized county public services of the Ministry of Education, which act to achieve the educational objectives provided in the National Education Law, in the field of pre-university education. They apply policies and strategies, control the application of legislation, and monitor the quality of teaching-learning activities and national standards/performance indicators, through school inspections. Also, the school inspectorates evaluate the quality of the management of pre-university education units, provide schooling for children, together with the local public authorities, and monitor their participation to classes during compulsory education years, respectively coordinate high school admissions, national evaluations, and school competitions. County Municipality Centers for Resources and Educational Assistance (CCREAs) and the Bucharest Municipality Center for Resources and Educational Assistance are units related to pre-university education, subordinated to the Ministry of Education and coordinated by the School Inspectorates. They coordinate the activity of county/Bucharest Municipality Centers of Psychopedagogical Assistance and of the psychopedagogical assistance offices from educational units, of inter-school speech therapy centers and offices. Also, through the School and Vocational Guidance Service, they offer educational guidance to students, by issuing Special Educational Needs certificates and School and Vocational Guidance Certificates. Teacher Training Centers (TTCs) are county resource centers, subordinated to the Ministry of Education, with the purpose of training as well as professional and personal development of the employees in the pre-university education system. The continuous training of teachers is carried out especially through approved or accredited training programs, offered by the TTC in each county, directly or in collaboration with NGOs, universities, or other social partners. 372 Annexes Special schools/inclusive education centers are educational units where some of the students with special educational needs are schooled, organized for all levels of pre-university education, depending on the type and degree of disability. They use specific teaching-learning strategies and methods. In each county, they are funded by the County Councils. Mainstream schools are pre-university education units corresponding to all levels and forms of education, branches, and profiles, in which the schooling of students in pre-university education is carried out. They are attended by typical students and students with special educational needs, the latter being included in classes corresponding to special integrated education or in mainstream classes, along with typical students. The Romanian Agency for Quality Assurance in Pre-University Education (RAQAPE) is a public institution of national interest, subordinated to the Ministry of Education, whose mission is to provide the external evaluation regarding the quality of education offered by pre-university education institutions and other organizations providing education, as well as to authorize, certify, and periodically evaluate pre-university education units. The Romanian Agency for Quality Assurance in Higher Education (RAQAHE) is an autonomous public institution whose mission is to perform external evaluation regarding the education provided by higher education institutions, based on which the authorization and accreditation of university education programs are granted. The agency periodically develops the methodology and standards for different types of programs and higher education providers, these being endorsed by the Ministry of Education and approved through Government Decision. The National Council for Financing of Higher Education (NCFHE) is a national advisory body of the Ministry of Education, its mission being to support the ministry in implementing public policies in the field of higher education, by developing proposals for regulations on university funding; establishing the average cost per equivalent student by cycle and field of study; submitting proposals for optimizing the financing of higher education; as well as by periodically verifying the efficiency of public funds management by higher education institutions. The methodology based on which the financial allocations are made (basic funding and additional funding) for each university is reviewed annually by NCFHE, submitted as a proposal to the Ministry of Education and then approved by Ministerial Order. NCFHE also coordinates the granting of funds for the institutional development of universities, on a project basis. Annex 1.7: Relevant institutional actors for the “Health” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. It also is responsible for reporting to the competent authorities any actions that take place in society that endanger the physical and mental health of children or persons with disabilities. The National Authority of Quality Management in Health (NAQMH) is a public institution subordinated to the government and coordinated by the Prime Minister. It aims to ensure and continuously improve the quality of health services and the safety of patients, including those with disabilities, by standardizing and evaluating health services and accrediting health facilities. Teacher Training Centers (TTCs) are county resource centers, subordinated to the Ministry of Education, with the purpose of training as well as ensuring professional and personal development of the employees in the pre-university education system. The continuous training of teachers at county level also includes the topic of disability. The Romanian College of Physicians (RCP) is a professional body under public law, with a role in authorizing, controlling, and supervising the medical profession as a liberal profession. RCP grants physicians the right to authorized public practice and offers accreditation to continuing medical education courses for physicians. 373 Annexes The National Health Insurance House (NHIH) is an autonomous public institution whose main attributions are: (i) regulating the system for collecting social health insurance contributions that make up the Single National Fund of Social Health Insurance (FNUASS); (ii) monitoring and efficiently using the FNUASS; (iii) developing the framework contract for financing the providers of public health services; and (iv) establishing the conditions for the provision of medical services to persons insured from the FNUASS. The Ministry of Health is the central authority in the field of public health care, having among its responsibilities the coordination and control of the implementation of policies, strategies, and programs in the field. The main responsibilities of the Ministry of Health are: (i) developing health policies, strategies, and programs in line with the government program; (ii) assessing and monitoring the health status of the population; (iii) monitoring, controlling, and evaluating the activity of health institutions; (iv) collaborating with other central public administration institutions for joint projects; and (v) designing and implementing national public health programs. The National Institute for Mother and Child Health (NIMCH) is a national reference institution in the field of mother and child health that: (i) provides hospital and outpatient care; (ii) is an undergraduate and postgraduate training center for doctors and nurses; (iii) conducts scientific research in the field of mother and child; and (iv) coordinates national health programs for mother and child, funded by the Ministry of Health. Annex 1.8: Relevant institutional actors for the “Social participation” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. The Authority coordinates policies for persons with disabilities at national level. Law no. 448/2006 provides for the granting of support by NARPDCA to certain NGOs. The Ministry of Culture is the central public authority responsible for developing and implementing the strategy and policies in the field of culture. The Administration of the National Cultural Fund (ANCF) is an autonomous public institution, subordinated to the Ministry of Culture. ANCF is the main public financier in the cultural field in Romania that applies a transparent process of evaluation and selection of cultural projects. Under the current funding framework, persons with disabilities are not explicitly targeted. The Ministry of Economy, Entrepreneurship and Tourism (MEET) is a specialized body of the central public administration, subordinated to the government, which applies the strategy and the government Program, among others, to the field of tourism. This Ministry could impose obligations to withdraw the operating license of tour operators that do not comply with accessibility norms. The Ministry of Youth and Sports (MYS) is a specialized body of the central public administration, subordinated to the government, which coordinates policies in the field of sports. MYS organizes sports events dedicated to people with disabilities, for example on International Disability Day. It also organizes social camps, including for people with disabilities. The Ministry of Development, Public Works and Administration (MDPWA) is a specialized body of the central public administration. Among others, it is the authority for public works and local tax procedures, and may legislate some provisions on the accessibility of public works and how they are contracted by local authorities (for example, playground equipment tenders). The National Paralympic Committee is a legal entity of private law, of public utility, having as members natural persons and legal entities with specific activity in the field of paralympic sports. By statute, the Committee operates on the basis of national programs, funded primarily by the government, and is in charge of the organization and control of sports activities for persons with disabilities. 374 Annexes The School and University Sport Federation is an autonomous unit, with legal personality, which operates under the Ministry of Education. The sports activity in educational institutions is regulated within the School and University Sport Federation by Law no. 69/2000 on physical education and sports, Art. 6. However, in the regulation of organization and functioning, it does not have any specific attribution regarding students with disabilities. Local public authorities (LPAs) are local, communal, and city councils, as deliberative authorities, and mayors, as executive authorities. Local authorities manage and fund some of the cultural institutions at local level. In addition, they manage the playgrounds, including organizing tenders for their equipment. Local councils also manage some of the sports structures. The National Authority for Payments and Social Inspection (NAPSI) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. NAPSI, through the county/Bucharest agencies for payments and social inspection, establishes, grants, and pays social assistance benefits (including benefits for persons with disabilities), manages the amounts intended to support social services and ensures the evaluation, monitoring, and control regarding the compliance with specific legislation in the field of social assistance. The social inspection activity includes thematic inspection missions, evaluation/monitoring missions, and unannounced inspection missions, with public authorities, social assistance providers, and service providers in general. Respecting the right of persons with disabilities to an accessible environment is one of the three components of the control activity (along with social assistance benefits and social assistance services). The Permanent Electoral Authority (PEA) is an autonomous administrative institution with legal personality and general competence in electoral matters, whose mission is to ensure the organization and conduct of elections and referendums, as well as the financing of political parties and electoral campaigns. PEA develops programs and establishes unitary procedures regarding the exercise of the right to vote by persons with disabilities, and ensures their popularization. For example, it is in charge of the organization of procedures for the exercise of the right to vote with the help of a mobile ballot box for non-transportable persons, including persons with disabilities. During the organization of elections, the following are constituted: the Central Electoral Bureau, constituency electoral bureaus at county/Bucharest level, sector electoral offices, in the case of Bucharest, and a constituency electoral bureau for Romanian citizens domiciled or residing abroad, as well as electoral bureaus of the polling stations. These are in charge of organizing the electoral process. Annex 1.9: Relevant institutional actors for the “Implementation of the CRPD and monitoring the rights of persons with disabilities” domain The National Authority for the Rights of Persons with Disabilities, Children and Adoptions (NARPDCA) is a specialized body of the central public administration, with legal personality, subordinated to the Ministry of Labor and Social Protection. It monitors how the rights of persons with disabilities and the rights of children are protected and promoted and follows how adoption legislation is respected. The Authority develops draft normative acts, public policies, standards, methodologies, regulations, instructions and working procedures, programs, and other working tools in the field of protection and promotion of the rights of persons with disabilities. It also manages databases in the field. NARPDCA was designated by Law no. 221/2010 as a coordinating mechanism for the implementation of the CRPD, with a role of inter-institutional coordination and cooperation, including by ensuring the coordination of the Contact Points and the harmonization of the data transmitted by them. The Romanian Ombudsman aims to protect the rights and freedoms of individuals in their relations with public authorities. The Ombudsman acts in five areas, including “rights of persons with disabilities” and “prevention of torture in places of detention,” to this end regularly monitoring the treatment of persons in places of detention (including persons with disabilities). The Monitoring Council for the implementation of the CRPD is the autonomous state authority, under parliamentary control, responsible for monitoring how the exercise of the rights of persons with disabilities in “closed” institutions is observed, verifying the legal status of their presence in institutions and notifying the competent judicial bodies whenever there are indications that the rights of persons with disabilities were violated by criminal acts, and may file a complaint, if necessary, against solutions of non-investigation or non-prosecution. 375 Annexes The National Council for Combating Discrimination (NCCD) is the autonomous state authority, under parliamentary control, which carries out its activity in the field of preventing and combating discrimination. NCCD may propose the establishment of special measures for the protection of disadvantaged persons or groups who are either in a position of unequal opportunities in relation to the majority of citizens, due to social origin or disability, or face rejection and marginalization. To this end, NCCD (i) collaborates with public authorities, legal persons, and natural persons to ensure the prevention, sanctioning, and elimination of all forms of discrimination and (ii) receives petitions and complaints regarding violations of the normative provisions regarding the principle of equality and non-discrimination, from natural persons, nongovernmental organizations aimed at the protection of human rights, other legal persons or public institutions, analyzes them, adopts the appropriate measures, and communicates the answer within the term provided by law. The National Mechanism for the Prevention of Torture (MPT) is the institution subordinated to the People’s Advocate that makes visits, announced or unexpected, to the places of detention in order to verify the conditions of detention and the treatment applied to persons deprived of freedom. MPT liaises with the UN Subcommittee on Prevention of Torture (SPT) and coordinates information campaigns aimed at preventing torture. The Ministry of Transport, Infrastructure and Communications (MTIC) has the role of implementing the government’s policy in the field of electronic communications, postal services, information technology, and the information society. MTIC has a Contact Point for the implementation of the CRPD. The Ministry of Education has a synthesis and coordination role in the field of education and vocational training. The Contact Point responsible for the implementation of the CRPD at the level of the Ministry is organized within the Directorate for Strategic Management and Public Policies. The Ministry of Investments and European Projects (MIEP) has the role of mediating the access of Romanian citizens to European funds and coordinates at national level the policy in the field of Structural and Investment Funds. MIEP has a Contact Point for the implementation of the CRPD. Together with the Coordination Mechanism (NARPDCA), it formulates and submits for adoption public policies and programs for the implementation of the CRPD in the field of European Structural and Investment Funds. The Ministry of Health is the central authority in the field of public health care, having among its responsibilities the coordination and control of the implementation of policies, strategies, and programs in the field. The National Center for Mental Health and the Fight Against Drugs operates under the Ministry, ensuring the coordination, implementation, and evaluation of mental health policies at national level. The Ministry of Justice contributes to the proper functioning of the judicial system. It ensures the conditions for the administration of justice as a public service and the defense of the rule of law and civil rights and freedoms. The Contact Point responsible for the implementation of the CRPD at the level of the Ministry of Justice is organized within the Directorate for European Affairs and Human Rights. 376 Annexes Annex 2. Introduction Annex-Table 1: Current status of the implementation of actions taken under each domains of intervention, August 2019 Actions stipulated by the National Strategy “A barrier-free society for people with disabilities” 2016–2020 No To be Not initiated Types of intervention Total Finalized information finalized yet received Accessibility 17 2 9 5 1 Participation 39 5 30 2 2 Equality 24 4 6 14 Employment 24 1 19 3 1 Vocational education and training 17 7 8 1 1 Social protection 15 3 8 2 2 Health 20 1 4 15 Statistics and data collection 10 10 Total 166 22 91 17 36 Source: NARPDCA survey for all actions included in the operational plan based on questionnaires sent to all coordinating institutions. Annex-Table 2: Socio-demographic structure organized according to the disability level, 2018 (percent) Persons... Without With some With severe disabilities disabilities disabilities Age 16-34 35 6 (6) 35-49 34 15 9 50-64 20 30 25 65+ 11 49 60 Total 100 100 100 Gender Male 51 41 38 Female 49 59 62 Total 100 100 100 Educational level Lower secondary school 26 44 60 attained by 2018 or lower High school/Post- 57 49 35 secondary school Higher education 16 7 4 Total 100 100 100 Source: World Bank calculations based on EU-SILC 2018 data. Note: The sample size for the numerator of the percentage presented in brackets is between 20 and 49, which makes the estimated value unreliable. 377 Annexes Annex-Table 3: Types of limitations experienced by persons with disabilities (percent) Yes, with Yes, No, without Yes, high Persons affected by... difficulty some difficulty complete Total difficulty incapacity Visual impairments, even when 30 49 19 2 100 wearing glasses or contact lenses Hearing impairments, even when 66 24 9 1 100 wearing a hearing aid Impairments when walking or 32 30 32 6 100 climbing stairs Memory or concentration 57 29 12 2 100 impairments Self-care impairments, such as the 68 18 8 5 100 ability to wash or clothe themselves Communication impairments, such as difficulty understanding others 76 16 6 2 100 or being understood by others Source: World Bank survey of persons with and without disabilities (2020). Annex-Table 4: Types of limitations experienced by persons with severe disabilities (percent) Yes, with Yes, No, without Yes, high Persons affected by... difficulty some difficulty complete Total difficulty incapacity Visual impairments, even when 27 43 27 4 100 wearing glasses or contact lenses Hearing impairments, even when 57 29 13 2 100 wearing a hearing aid Impairments when walking or 16 21 51 12 100 climbing stairs Memory or concentration 41 35 21 3 100 impairments Self-care impairments, such as the 46 26 17 11 100 ability to wash or clothe themselves Communication impairments, such as difficulty understanding others 62 22 12 5 100 or being understood by others Source: World Bank survey of persons with and without disabilities (2020). 378 Annexes Annex-Table 5: Correspondence between CRPD articles and the domains of the Diagnosis Effective protection Color codes: Social services and independent living Social protection Accessibility and implementation Cross-cutting domain Participation in Employment Chapter dealing with the respective article Education of rights mobility Chapter touching upon the article society Health CRPD CRPD articles Art. 3. General principles Art. 4. General obligations Art. 5. Equality and non-discrimination Art. 6. Women with disabilities Art. 7. Children with disabilities Art. 8. Awareness-raising Art. 9. Accessibility Art. 10. Right to life Art. 11. Situations of risk and humanitarian emergencies Art. 12. Equal recognition before the law Art. 13. Access to justice Art. 14. Liberty and security of person Art. 15. Freedom of torture or cruel, inhuman or degrading treatment or punishment Art. 16. Freedom from exploitation, violence and abuse Art. 17. Protecting the integrity of the person Art. 18. Liberty of movement and nationality Art. 19. Living independently and being included in the community Art. 20. Personal mobility Art. 21. Freedom of expression and opinion, and access to information Art. 22. Respect for privacy Art. 23. Respect for home and the family Art. 24. Education Art. 25. Health Art. 26. Habilitation and rehabilitation Art. 27. Work and employment Art. 28. Adequate standard of living and social protection Art. 29. Participation in political and public life Art. 30. Participation in cultural life, recreation, leisure and sport Art. 31. Statistics and data collection Art. 33. National implementation and monitoring 379 Annexes Annex 3. Accessibility and mobility Annex-Table 6: Accessible institutions according to the inspection visits conducted by NAPSI 2014-2017, by accessibility criteria (percent) Healthcare facilities Community public services personal services personal County Councils County public Prefectures City Halls Schools records records Inspection year 2016 2015 2014 2014 2014 2014 2014 Accommodated institutions under all 7 9 3 0 5 7 15 criteria Unaccommodated or have no ramps* 69 52 69 60 40 33 33 Unaccommodated entrance doors 20 3 28 18 12 3 0 Unaccommodated corridors 0 1 10 0 2 0 0 Unaccommodated toilets 82 90 73 76 58 53 Unaccommodated or no lift/platform/ 85 34 47 43 33 29 moving sidewalk* No accommodated information desks 42 26 27 13 8 6 No pictograms 68 58 65 45 59 58 56 Unaccommodated or no information 27 45 60 73 56 39 50 boards No sign language interpreter 92 100 86 97 88 Source: NAPSI Annual Activity Reports. Inspections were made to 5,627 schools, 428 healthcare facilities, 116 community public services personal records, 11 county public services/directorates personal records, 121 city halls, 41 prefect institutions, and 40 county councils. Note: *The total is different from the total number of institutions inspected because some of them do not need a ramp or an elevator. Annex-Table 7: Accessible institutions according to the inspection visits conducted by NAPSI 2018-2019, by accessibility criteria (percent) Performance Shopping City Halls Museums Libraries facilities centers Sports Hotels venues and Inspection year 2019 2019 2019 2019 2019 2018 Accommodated institutions under all criteria 8 4 1 12 30 3 Unaccommodated or have no ramps* 55 57 66 46 46 63 Unaccommodated entrance doors 11 7 12 3 4 6 Unaccommodated corridors 2 4 5 3 0 6 Unaccommodated toilets 71 78 70 53 Unaccommodated or no lift/platform/ 65 61 91 32 56 moving sidewalk* No audible warning systems 65 68 64 No tactile-visual warning surfaces 74 81 75 No accommodated information desks 11 10 12 26 No pictograms 53 61 71 74 41 380 Annexes Performance Shopping City Halls Museums Libraries facilities centers Sports Hotels venues and Unaccommodated or no information 10 11 15 25 boards No sign language interpreter 88 Source: NAPSI Annual Activity Reports. Inspection visits were made to 445 city halls, 127 performance venues, 199 museums and libraries, 78 sports facilities, and 185 shopping centers. Note: * The total is different from the total number of institutions inspected because some of them do not need a ramp or a lift. Annex-Table 8: The percentage of persons who had no difficulties in accessing information belonging public institutions or services Persons... Without With some With severe disabilities disabilities disabilities Area 69 54 32 Rural 72 44 28 Gender Male 71 54 36 Female 70 45 36 Age 16-34 79 77 35 35-49 72 71 42 50-64 65 54 36 65+ 61 33 24 Education level Lower secondary school 60 30 21 or lower High school/Post- 73 60 40 secondary school 72 66 35 Source: World Bank survey of persons with and without disabilities (2020). Note:* The rest up to 100 percent are persons who either had difficulties, either didn’t knew how to use the internet or for which it wasn’t the case to use the internet 381 Annexes Annex-Table 9: The percentage of persons who had no difficulties in accessing the desired internet websites Persons... Without With some With severe disabilities disabilities disabilities Area 76 50 32 Rural 68 31 16 Gender Male 74 45 28 Female 71 38 22 Age 16-34 92 86 48 35-49 81 70 46 50-64 63 49 33 65+ 43 17 14 Education level Lower secondary school 51 17 14 or lower High school/Post- 75 52 34 secondary school Higher education 84 70 48 Source: World Bank survey of persons with and without disabilities (2020). Note:* The rest up to 100 percent are persons who either had difficulties, either didn’t knew how to use the internet or for which it wasn’t the case to use the internet. Annex-Table 10: Persons with and without disabilities who used a public mode of transport in the previous week (percent) Persons... Without With some With severe disabilities disabilities disabilities Yes 32 23 18 No, because I did not need it 63 70 66 No, because there is none available in my locality 2 2 3 No, because the mode of transport available in the locality are not accommodated to my type of 0 1 5 disability No, other reasons, which? 2 4 8 Total 100 100 100 Source: World Bank survey of persons with and without disabilities (2020). Annex-Table 11: Percentage of persons with and without disabilities without a support network in case of emergencies Persons... Without With some With severe disabilities disabilities disabilities Do you have…. A neighbor to whom you can always turn? 9 13 22 A member of your household or family who can 11 17 18 reach you quickly at any time? Sursa: Ancheta Băncii Mondiale cu persoane cu și fără dizabilități (2020). 382 Annexes Annex 4. Effective protection of the rights of persons with disabilities Annex-Table 12: The profile of persons placed under guardianship in 2019 (percent) Percentage adjusted by removing the Percentage cases with no information available Area (2019) Urban 54 54 Rural 46 46 Total 100 100 Gender (2019) Men 46 46 Women 53 55 Not specified 1 Total 100 100 Age (2019) 18-34 years of age 20 20 35-49 years of age 17 17 50-64 years of age 17 17 65 years of age and over 45 46 Not specified 1 Total 100 100 Person/institution Family member 84 87 having requested GDSACP 5 5 the adjudication of incapacity (2019) Guardianship Authority 1 1 Psychiatric Hospital 1 1 Other persons/institutions 6 6 Unknown 3 Total 100 100 Type of guardian/ Family member 88 89 legal representative Representative of the local public (2019) administration (Local Council or 3 3 Mayor’s Office) Representative of the Guardianship 3 3 Authority Residential center staff 2 2 GDSACP manager/other staff 0 0 Other persons 3 3 No guardian has been appointed yet 1 1 Total 100 100 Degree of disability With a disability certificate 95 95 Without a disability certificate 5 5 Total 100 100 383 Annexes Percentage adjusted by removing the Percentage cases with no information available Degree of disability Low 0 1 (for persons with a Mild 1 2 disability certificate) (2019) High 11 14 Severe 65 84 Unknown 23 Total 100 100 Type of disability Physical disability 4 5 (for persons with a Somatic disability 1 1 disability certificate) (2019) Hearing impairment 0.4 0.5 Visual impairment 1 1 Mental disability 28 37 Psychosocial disability 33 44 Associated disability 7 9 HIV/AIDS 0.1 0.2 Rare diseases 0.3 0.4 Deafblindness 0.7 0.9 Unknown 21 Total 100 100 Source: Data collected by NARPDCA and the World Bank from Guardianship Authority Services in 1,673 localities (June-August 2020). Note: The data were extrapolated to all 3,187 localities of Romania to estimate national values. Annex-Table 13: Percentage of courts of law and police precincts that are not accessible by type of accommodations Percentage Percentage Percentage Percentage Courts of Precincts Instance of First County Appeal Courts Courts Police Physically accessible 0 0 0 0 With an adapted, reserved, or signposted parking 60 74 82 81 area or with no parking area With an accessible accessway to the building 13 19 12 3 With a proper access ramp or with no need for one 27 19 20 15 With an accessible building entrance 20 36 14 3 With accessible corridors 100 95 88 82 With accessible interior doors 87 86 67 61 With an accessible reception counter or with no 27 50 54 33 counter With an accessible elevator/lift platform/sidewalks 43 41 35 41 or escalators or with no need for them With accessible bathrooms 7 7 1 0 384 Annexes Percentage Percentage Percentage Percentage Courts of Precincts Instance of First County Appeal Courts Courts Police Accessibility of information and communications 7 0 0 0 Accessibility of information 13 0 0 0 There is accessible information on how to access the 80 79 67 43 institution There are signs in Braille 20 17 6 3 The signs are located in accessible areas 20 17 6 3 The sign’s location is easy to find 13 12 4 2 The signs are easy to understand/are not confusing 20 17 5 3 The institution does not have a website or its website 33 24 26 72 is accessible to the visually impaired There are accessibility-related icons 40 50 24 8 The icons are easy to understand/are not confusing 40 50 23 7 The icons are at the appropriate height 40 50 22 8 There are appropriate electronic noticeboards 47 33 20 5 Accessibility of communications 40 33 21 5 There are interpreters certified in sign language and 40 50 43 12 deafblind-specific language There is someone specifically appointed to assist 87 64 49 24 persons with disabilities Physically accessible and with accessible 0 0 0 0 information and communications Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020. 385 Annexes Annex 5. Employment Annex-Table 14: Employment rate, 2017/2018 (percent) Persons... Without With some With severe disabilities disabilities disabilities Year 2010 75 44 11 2018 75 52 14 Source: Calculations made by the World Bank based on EU-SILC data. Annex-Table 15: Employment rate by disabilities and sociodemographic characteristics, 2017/2018 (percent) Persons... Without With some With severe disabilities disabilities disabilities Total 74 51 12 Age 20-34 69 59 7 35-49 85 76 27 50-64 64 37 8 Gender Men 85 63 13 Women 63 42 11 Level of education Middle school or less 59 36 8 High school/post-high 75 53 12 school level University education 90 77 41 Type of locality Municipalities 80 48 18 Towns 73 48 10 72 53 10 Source: Calculations made by the World Bank based on EU-SILC data. Annex-Table 16: Occupational status of persons with and without disabilities by age group, 2017/2018 (percent) Aged 20-34 Aged 35-49 Aged 50-64 disabilities disabilities disabilities disabilities disabilities disabilities Without Without Without With With With Full-time employees 54 36 66 50 47 20 Part-time employees 1 0 0 1 0 0 Full-time self-employed 9 9 13 14 12 7 Part-time self-employed 6 3 6 4 5 4 Unemployed 3 2 1 1 1 0 Student, included in training programs, work experience 12 4 0 0 0 0 Retired or early retired or having left a business 0 5 0 9 24 56 With permanent disability and/or work incapacity 0 13 0 6 0 2 Domestic work or care work 12 21 12 13 9 9 Other inactive persons 4 6 2 2 1 2 Total 100 100 100 100 100 100 Source: Calculations made by the World Bank based on EU-SILC data. 386 Annexes Annex-Table 17: Occupational status of persons with and without disabilities by gender, 2017/2018 (percent) Men Women disabilities disabilities disabilities disabilities Without Without With With Full-time employees 64 35 51 26 Part-time employees 0 0 0 1 Full-time self-employed 15 13 7 6 Part-time self-employed 6 5 4 4 Unemployed 2 1 1 1 Student, included in training programs, work experience 4 0 4 1 Retired or early retired or having left a business 5 38 7 37 With permanent disability and/or work incapacity 0 5 0 4 Domestic work or care work 0 0 23 20 Other inactive persons 3 3 1 2 Total 100 100 100 100 Source: Calculations made by the World Bank based on EU-SILC data. Annex-Table 18: Payment of penalties by Romanian ministries for failing to employ persons with disabilities, 2019 Number of jobs* Ministry of External Affairs 79 Ministry of Internal Affairs 0 Ministry of Agriculture and Rural Development 20 Ministry of Culture 11 Ministry of Economy, Entrepreneurship and Tourism 8 Ministry of Education 15 Ministry of Finance 52 Ministry of European Investments and Projects 31 Ministry of Justice 12 Ministry of Development, Public Works, and Administration 32 Ministry of Environment, Water, and Forests 9 Ministry of Labor and Social Protection 11 Ministry of Health 9 Ministry of Youth and Sports 2 Ministry of Transport and Infrastructure 10 Source: Calculations made by the World Bank of data from the 2019 Budget Execution Reports available on the website of the Ministry of Finance. Note: * The number of jobs is calculated as the ratio between the amounts paid for failing to employ persons with disabilities and the gross minimum wage (2080 RON) multiplied by 12 months. 387 Annexes Annex-Table 19: Professions for persons aged 20–64 according to their level of education and their disabilities, 2017/2018 (percent) Less than High-school/ lower Higher Vocational secondary education school school disabilities disabilities disabilities disabilities disabilities disabilities Without Without Without With With With 1. Elementary occupations 0 0 1 1 7 9 2. Machine operators and assemblers 1 0 3 3 66 70 3. Qualified workers and related trades 1 0 8 6 10 7 4. Qualified workers in agriculture, forestry, and 0 1 4 4 5 4 fishery 5. Service workers 8 7 21 18 7 2 6. Clerical support workers 43 35 11 9 0 0 7. Technicians and other technical specialists 12 21 27 36 1 1 8. Professionals 6 7 18 16 1 1 9. Members of the legislative body, of the executive body, high positions in public administration, 29 29 7 6 0 0 leaders/managers, and senior civil servants 10. Armed forces 0 0 1 0 3 5 Total 100 100 100 100 100 100 Source: Calculations made by the World Bank using EU-SILC 2018 data Annex-Table 20: Percentage of employees (including self-employed) working less than 30 hours a week, 2018 Persons... Without With disabilities disabilities Romania 2 5 Austria 16 18 Belgium 14 28 Bulgaria 4 7 Croatia 2 5 Czech Republic 4 10 Cyprus 10 15 Denmark 7 17 Estonia 6 13 Finland 8 10 France 10 18 Greece 11 17 Hungary 3 8 Ireland 22 34 Italy 13 15 Latvia 5 9 Lithuania 5 14 388 Annexes Persons... Without With disabilities disabilities Luxembourg 9 15 Malta 8 12 The Netherlands 24 35 Poland 4 9 Portugal 4 6 Slovakia 2 5 Slovenia 3 9 Spain 9 13 Sweden 6 26 Source: Calculations made by the World Bank using EU-SILC data. Annex-Table 21: Percentage of employees (including self-employed) working less than 30 hours a week, 2017/2018 Persons... Without With disabilities disabilities Level of education Lower secondary school or less 5 13 High-school/Post-secondary non- 1 2 tertiary Higher-education 0 0 Urban/rural Cities 0 0 Towns 1 4 Rural area 3 7 Source: Calculations made by the World Bank using EU-SILC data. Annex-Table 22: Participation in formal, nonformal, and informal education and training during the previous 12 months, population aged 25-64 years old (percent) Persons... Without With some With severe disabilities disabilities disabilities Area Urban 42 27 12 Rural 29 16 10 Gender Men 34 25 15 Women 38 20 7 Education attainment Secondary education or 16 11 8 level less High school/post-high 31 21 10 school University education 59 43 32 Source: World Bank survey of persons with and without disabilities (2020). 389 Annexes Annex-Table 23: Example of indicator targets at the project level Indicator Minimum target required 4S8. People who benefit from support, consisting of: The minimum target of the o 4.S.8.1. The unemployed and inactive - 50 percent of 4.S.8, of indicator 4.S.8 is 200 people. whom: • 20 percent are people over 54 years old (4S8.1.3.), and • 30 percent are the long-term unemployed 4S8.1.1 and/ or persons with disabilities 4S8.1.2 and/or people with a primary education (ISCED 1) or lower secondary education (ISCED 2) 4S8.1.4 and/or people with a high school education (ISCED 3) or post-high school education (ISCED 4) 4S8.1.5 o 4.S.8.2. Roma - 20 percent of 4.S.8 o 4.S.8.3. People from rural areas - 30 percent of 4.S.8. 4S6. People who, when they cease to be participants, acquire a The minimum target of qualification, consisting of: indicator 4S6 is at least 64 o 4.S.6.1. The unemployed and inactive - 50 percent of 4.S.6, of percent of 4S8. whom: • 20 percent are people over 54 years old (4.S.6.1.3.), and • 30 percent are the long-term unemployed 4S6.1.1 and/or persons with disabilities 4S6.1.2 and/or people with a primary education (ISCED 1) or lower secondary education (ISCED 2) 4S6.1.4 and/or people with a high school education (ISCED 3) or post-high school education (ISCED 4) 4S6.1.5 o 4.S.6.2. Roma - 20 percent of 4.S.6 o 4.S.6.3. People from rural areas - 30 percent of 4.S.6. 4S7. People who, when they cease to be participants, have a job, The minimum target of the including freelancers, consisting of: indicator 4S7 is at least 40 o 4.S.7.1. The unemployed and inactive - 50 percent of 4.S.7, of percent of 4S8. whom: • 20 percent are people aged over 54 years old (4.S.7.1.3.), and • 30 percent are the long-term unemployed 4S7.1.1 and/ or persons with disabilities 4S7.1.2 and/or people with a primary education (ISCED 1) or lower secondary education (ISCED 2) 4S7.1.4 and/or people with a high school education (ISCED 3) or post-high school education (ISCED 4) 4S7.1.5 o 4.S.7.2. Roma - 20 percent of 4.S.7 o 4.S.7.3. People from rural areas - 30 percent of 4.S.7. Source: Ministry of European Funds (at present, Ministry of Investments and European Projects), Applicant Guide - Specific Conditions, Improving the level of professional skills and enhancing the employment level among the unemployed and inactive persons, Roma persons and rural persons from the ITI territory, Danube Delta. 390 Annexes Annex-Table 24: Lifelong learning process Early education Pre-school education Primary education (including special education) Secondary education (including LIFELONG LEARNING special education) High school education Pre-university education Vocational education Dual education The education system Post-high school education (including special education) Technical education – foremen Short-term higher education Bachelor’s Degree Higher education Master’s Degree PhD Initiation programs Qualification programs Formal learning Retraining programs Workplace apprenticeship Upskilling programs Adult education and Specialization programs continuing training On-the-job training Nonformal learning Self-training Unintentional, unstructured Informal learning training that does not take place in an institution Source: Prepared by the World Bank Team based on Law no.1/2011 of National Education, Art. 329 para. (3). 391 Annexes Annex 6. Social Protection Annex-Table 25: Rates of severe deprivation (percent) Persons... Without With some With severe disabilities disabilities disabilities Year 2010 11 10 15 2018 6 6 14 Type of locality in Municipalities 2 * * 2017/2018 Towns 4 4 15 Level of education in Rural areas 12 12 17 2017/2018 Lower secondary 17 13 18 education or less Upper secondary school/post-secondary 4 3 (7) education University education * * * Source: Calculations made by the World Bank using EU-SILC data. Note: * Unreported values because the number of cases in the sample for the counter is lower than 20. The sample size for the percentage numerator in parentheses is between 20 and 49, making the estimated value unreliable. Annex-Table 26: Rate of relative poverty (percent) Persons... Without With some With severe disabilities disabilities disabilities Year 2010 20 17 22 2018 21 24 32 Gender Men 21 19 25 Women 21 24 32 Type of locality in Municipalities 6 6 (7) 2017/2018 Towns 15 16 28 Level of education in Rural areas 35 35 40 2017/2018 Lower secondary 45 37 39 education or less Upper secondary school/post-secondary 16 12 16 education University education (1) * * Source: Calculations made by the World Bank using EU-SILC data. Note: * Unreported values because the number of cases in the sample for the counter is lower than 20. The sample size for the percentage numerator in parentheses is between 20 and 49, making the estimated value unreliable. 392 Annexes Annex-Table 27: Percentage of persons living in households who manage to pay their absolutely necessary current expenses only with great difficulty Persons... Without With some With severe disabilities disabilities disabilities Year 2010 18 23 36 2018 11 15 29 Type of Municipalities 10 15 25 locality in Towns 9 13 36 2017/2018 Rural areas 15 17 31 Level of Lower secondary education or less 19 21 34 education in Upper secondary school/post- 2017/2018 10 12 26 secondary education University education 4 (7) (14) Income The poorest 20 percent (Q1) 27 30 46 quintiles Q2 20 22 42 Q3 15 17 37 Q4 8 12 24 The richest 20 percent (Q5) 5 8 (10) EU countries Romania 11 15 29 Greece 36 40 48 Bulgaria 24 36 47 Croatia 11 18 31 Czech Republic 18 23 29 Portugal 10 18 25 Latvia 7 14 25 Slovenia 4 8 23 Hungary 10 16 22 Denmark 2 5 20 Spain 9 15 19 Slovakia 6 9 19 Ireland 5 11 18 Italy 8 10 18 Lithuania 4 7 17 Belgium 6 11 16 Sweden 3 7 15 Poland 4 10 15 Cyprus 3 6 13 The Netherlands 1 4 12 Estonia 2 7 12 Luxembourg 4 6 11 Austria 4 4 11 Finland 1 4 9 Malta 3 6 8 France 4 4 7 Source: Calculations made by the World Bank using EU-SILC data. Note: The sample size for the percentage numerator in parentheses is between 20 and 49, making the estimated value unreliable. 393 Annexes Annex-Table 28: Average disability-related social protection benefits within the purchasing power standard (PPS) per capita, 2017 Romania European Union Ratio between PPS per PPS per EU and % % capita capita Romania Total disability-related social 184 100 623 100 3 protection benefits Financial benefits 158 86 427 69 3 Invalidity pensions 101 55 315 51 3 Regular care allowance 1 1 41 7 29 Regular economic integration of 0.5 0 49 8 106 persons with disabilities Other regular financial benefits 55 30 14 2 0.3 Fixed cash benefits 0 0 7 1 Benefits in kind 26 14 196 31 7 Housing 9 5 52 8 6 Rehabilitation 1 1 56 9 41 Home support 14 8 74 12 5 Other benefits in kind 3 1 14 2 6 Source: ESSPROS. Note: The purchasing power standard is an artificial common reference currency used in the European Union to eliminate price differences between countries. A PPS allows a person to buy the same quantity of goods and services in all countries. Annex-Table 29: Benefit amounts in € per capita (at constant prices since 2010), 2009 -2017 Romania UE-27 Percentage Percentage 2009 2017 2009 2017 increase increase Total social protection benefits 1,039* 1,214 17 6,762 7,336 8 Total disability-related social protection 99 79 -20 510 562 10 benefits Financial benefits 90 68 -24 376 386 3 Invalidity pensions 69 44 -37 288 285 -1 Regular care allowance 0.4 0.6 59 36 37 3 Regular economic integration of 0.2 0.2 33 33 44 32 persons with disabilities Other regular financial benefits 20 24 18 10 13 33 Fixed cash benefits 0.0 0.0 0 9 6 -26 Benefits in kind 9.4 11.4 21 134 177 32 Housing 4.4 3.7 -16 38 47 24 Rehabilitation 0.7 0.6 -18 43 50 17 Home support 3.2 6.0 85 41 67 64 Other benefits in kind 1.0 1.1 10 13 13 1 Source: ESSPROS. Note: * This means that €1,039 were spent in Romania in 2009 at constant prices since 2010. Between 2009 and 2017, there was an increase of 17 percent in real terms of the amounts spent per person on social protection benefits in Romania. 394 Annexes Annex-Table 30: Financial benefits specifically targeted to cover the additional costs related to disability Monthly amounts in RON beneficiaries Law, Art. Number of average) (monthly Social benefit/facility Severe High Mild Low 0-17 18+ 0-17 18+ 0-17 18+ 0-17 18+ Law no. State child allowance, 448/2006, 300 300 300 70,1231/ increased by 100 percent Art. 58 Social benefits granted to the parent, guardian, or person caring for a child with a GEO no. 300 175 60 65,2462/ severe, high, or mild disability 82/2017 (complementary monthly personal budget) Law no. Food allowance (children with 448/2006, 11 RON/day (children) HIV/AIDS) Art. 58 Parental leave and statutory GEO no. parental allowance (3 years 111/2010, Art. 1,250 1,250 1,250 of age) 2 para. (2) GEO no. Parental leave and statutory (average 111/2010, Art. parental allowance (7 years 31 para. (1) 1,162 1,162 1,162 of 10,338 of age) and (2) persons a month3/) 4-hour work program and GEO no. 111/2010, Art. compensatory allowance 32 para. (1) 696 696 for parents of children with let. a) and severe/high disabilities para. (5) D.G.C.M.B. Social integration incentive 330/August 500 500 500 500 (Municipality of Bucharest) 30, 2017 Allowance for persons with Law no. severe or accentuated 448/2006, 350 265 680,372 disabilities Art. 58 Complementary personal Law no. budget for adults with severe, 448/2006, 150 110 60 747,866 high or mild disabilities Art. 58 Income tax exemption for the income resulting from independent activities, salaries, pensions, agricultural activities, forestry, and fish farming (for persons with severe or accentuated disabilities) Law no. One spa treatment ticket per 448/2006, year Art. 11 Free accommodation and Law no. meals for students with 448/2006, disabilities in boarding schools Art. 16 50 percent discount on the Law no. cost of accommodation and 448/2006, meals in student dormitories Art. 16 395 Annexes Monthly amounts in RON beneficiaries Law, Art. Number of average) (monthly Social benefit/facility Severe High Mild Low 0-17 18+ 0-17 18+ 0-17 18+ 0-17 18+ Exemption from the payment Law no. of rent for social housing, 448/2006, for persons with severe and Art. 20 accentuated disabilities Free use of surface urban and Law no. metro transport, for persons 448/2006, with severe and accentuated Art. 23 disabilities Free use of intercity transport of choice in any type of train, without exceeding the cost of a 2nd class interregional (IR) Law no. train ticket or bus or river boat 448/2006, transport for 12 round trips Art. 24 per calendar year (for severe disabilities) and 6 trips (for accentuated disabilities) Subsidized interest for loans Law no. up to €10,000 (for persons 448/2006, with severe and accentuated Art. 27 disabilities) Law no. Free road vignette for owners 448/2006, of adapted vehicles Art. 28 Source: 1/ MLSP (2020: 2). 2/ MLSP (2020: 12). 3/ MLSP (2020: 7). Annex-Table 31: List of assistive devices and technologies recommended by WHO versus the list of eligible for reimbursement from the SNSHIF in Romania List of assistive technologies and devices List of assistive technologies and devices recommended by WHO that can be reimbursed from the SNSHIF 1 Hearing aids (digital) and batteries ENT prostheses 2 Stoma prostheses 3 Absorbent urinary incontinence devices Urinary incontinence devices 4 Lower limb prostheses Lower limb prostheses 5 Upper limb prostheses 6 Spine orthoses Spine orthoses 7 Upper limb orthoses Upper limb orthoses 8 Lower limb orthoses Lower limb orthoses Orthopedic footwear, footwear for 9 Orthopedic footwear neuropathy/diabetes Glasses: sight, short/long distance, filters, 10 Vision aids: Intraocular lenses protection Oxygen therapy and non-invasive ventilation 11 equipment 12 Aerosol therapy devices 396 Annexes List of assistive technologies and devices List of assistive technologies and devices recommended by WHO that can be reimbursed from the SNSHIF Crutches, walking sticks, underarm/elbow crutches, tricycles, walking frames, walking Walking aids (crutches, walking sticks, walking 13 aids, wheelchairs for active users, manual frames, wheelchairs, tricycles) wheelchairs, manual wheelchairs with postural support, electric wheelchairs 14 External breast prosthesis Warning system with light/sound/vibration 15 signaling 16 Audio player with DAISY system 17 Braille display (keyboard) 18 Braille writing equipment 19 Shower/bathtub/toilet seats 20 Close caption 21 Devices for treating clubfoot 22 Communication devices (tablets/books/cards) 23 Communication software 24 Communication devices for the deafblind 25 Fall detection system 26 “Voice for hands” technology 27 Global positioning system - GPS 28 Handrail/grab bar 29 Hearing Loop/FM Systems 30 Mouse and keyboard replacement software 31 Digital magnifiers 32 Optical magnifiers 33 Personal digital assistant (PDA) 34 Personal alarm systems 35 Drug organizer 36 Pressure relief cushions 37 Pressure relief mattresses 38 Portable ramps 39 Recorders 40 Rollators 41 Screen readers 42 Simplified mobile phones 43 Adjustable verticalizers 44 Time management products 45 Travel assistants 46 Video communication devices 47 Audio/tactile watches 48 White canes Source: WHO (2016), NHIH (2018). 397 Annexes Annex 7. Social services and independent living Annex-Table 32: Main tools used to assess the needs of adults with disabilities and for planning and monitoring relevant services Individual The IRSIP lists the medical, educational, professional, and social actions necessary Rehabilitation for the recovery, rehabilitation, training and social integration of a person with and Social disabilities. Together with the disability certificate, this document is issued to the adult Integration with disabilities following the latter’s request for disability assessment and is reviewed Program whenever necessary. The IRSIP is prepared by the Committee for the Assessment (IRSIP) of Adults with Disabilities (CAAD) in the county or sector of the Municipality of Bucharest where the person lives. There is a template for an IRSIP in Annex 2 of GD no. 430/2008, but its structure is very general. Individual The ISP is the document that sets short, medium, and long-term objectives for an Service Plan adult with disabilities, specifying the methods of intervention and support through (ISP) which the activities and services specified in the IRSIP are carried out. The ISP is prepared by the person’s case manager and is approved by the specialists of the Comprehensive Assessment Service. The ISP is given by the case manager to both the adult with disabilities and the representative of the social assistance public service in the area where the person with disabilities lives. The case manager must monitor progress towards the attainment of the objectives in the ISP and, depending on the situation, modify or replace these measures in cooperation with specialists in the fields of health and education and with the adult with disabilities or his/her legal representative. Customized The CP is a service and activity planning tool for each adult with disabilities Plan (CP) developed by the evaluation team within the social service provider for the beneficiaries of services. Plan for the The PFF is a tool used for persons living in protected dwellings. It sets short-term Future (PFF) objectives for the individual training of a resident and recommends activities and services to enable them to achieve the maximum possible independence. This plan is filled in by the person’s case manager together with the staff working directly with the beneficiary, with the active participation of the beneficiary. The beneficiary’s evaluation sheet is used for the initial assessment and periodic Beneficiary’s assessment (every 6 months, at the most) of an adult person with disabilities in Evaluation residential services. It covers items such as the person’s general health status, Sheet degree of autonomy, communication skills, and special needs. It is filled in by the multidisciplinary team of the residential center. The CIP is used to observe that the beneficiary’s normal life schedule when at a respite or crisis center is respected. The tool contains information on the scheduling Customized of the steps for obtaining the documents needed for the certification of the disability Intervention (only for the crisis center), the scheduling of the services and activities for the fixed Plan (CIP) period during which the adult with disabilities benefits from the services and activities of the center, and the methods used to accomplish them. The CIP is filled in by the team that filled in the assessment sheet. The monitoring sheet is used in all social services for adults with disabilities to ensure the coordination, monitoring, and evaluation of the implementation of the beneficiary’s ISP, CIP, and of the activities and services included in IRSIP. It consists of two parts: (i) a summary of the evolution of the beneficiary’s situation, drafted Monitoring during the meetings between the case manager and the staff involved in providing Sheet the planned services and (ii) an analysis of how the beneficiaries are provided with a safe environment in terms of protection against exploitation, violence and abuse, protection against torture, and cruel, inhuman, or degrading treatment. The case manager fills in the monitoring sheet every month, at least every three months, or whenever necessary. Source: Prepared by the World Bank team. 398 Annexes Annex-Table 33: Romania’s residential services for adults with disabilities as of March 31, 2020 Average Total number Number of number of of beneficiaries centers beneficiaries per center Total 17,496 444 39 Care and assistance centers (CACs) 6,623 132 50 Habilitation and rehabilitation centers (HRCs) 1,408 33 43 Centers for occupational therapy-based integration 841 11 76 (COTBIs) Pilot centers for disability recovery and rehabilitation 91 2 46 (PCDRRs) Neuropsychiatric recovery and rehabilitation centers 5,372 58 93 (NRRCs) Disability recovery and rehabilitation centers 2,057 56 37 (DRRCs) Centers for independent living (CILs) 19 2 10 Sheltered house (SH) 1,048 144 7 Crisis centers (CCs) 23 2 12 Respite centers (RCs) 14 4 4 Source: MLSP. Annex-Table 34: Distribution of beneficiaries by type of residential service and type of disability (percent) Hearing/ HIV/ Physical Somatic Mental Psychiatric Related Total Visual AIDS Total 15 2 2 51 14 14 1 100 Total CACs, HRCs, COTBIs, PCDRRs, NRRCs, and 15 2 2 51 14 14 1 100 DRRCs Care and assistance 15 2 4 51 14 14 1 100 centers (CACs) Habilitation and rehabilitation centers 2 0 1 60 28 10 0 100 (HRCs) Centers for occupational therapy-based integration 1 0 1 57 32 8 0 100 (COTBIs) Pilot centers for disability recovery and 0 0 0 79 9 12 0 100 rehabilitation (PCDRRs) Neuropsychiatric recovery and rehabilitation centers 1 0 1 54 27 16 0 100 (NRRCs) Disability recovery and rehabilitation centers 4 0 3 72 9 12 0 100 (DRRCs) Centers for independent 0 0 5 68 0 26 0 100 living (CILs) Sheltered house (SH) 4 1 1 71 14 9 0 100 Crisis centers (CCs) 0 0 0 48 26 26 0 100 Respite centers (RCs) 36 0 0 21 0 43 0 100 Source: MLSP. 399 Annexes Annex-Table 35: Distribution of residential services by age structure of beneficiaries (percent) 18-34 35-49 50-64 65+ Total Total 33 27 19 21 100 Total centers 32 27 20 21 100 Care and assistance centers (CACs) 22 17 22 39 100 Habilitation and rehabilitation centers (HRCs) 40 30 21 8 100 Centers for occupational therapy-based integration 30 52 15 4 100 (COTBIs) Pilot centers for disability recovery and rehabilitation 21 26 8 45 100 (PCDRRs) Neuropsychiatric recovery and rehabilitation centers 34 32 22 11 100 (NRRCs) Disability recovery and rehabilitation centers (DRRCs) 52 32 9 7 100 Centers for independent living (CILs) 79 21 0 0 100 Sheltered house (SH) 54 29 9 7 100 Crisis centers (CCs) 26 43 22 9 100 Respite centers (RCs) 0 43 43 14 100 Source: MLSP. Annex-Table 36: Structure of institutionalized population by level and type of disability and by age, 2021 and 2020 (percent) 2012 2020 Level of disability in residential services High 38 43 Accentuated 50 47 Moderate 10 9 Mild 2 1 Total 100 100 Type of disability in residential care Physical 6 7 centers (except for CILs, respite, and Somatic 2 1 crisis centers) Hearing 1 0 Visual 3 2 Mental 54 56 Psychiatric 25 20 Related 8 14 HIV/AIDS 0 0 Rare diseases 0 0 Deafblindness 0 Total 100 100 Age in residential care centers (except 0-17 0 for CILs, respite, and crisis centers) 18-34 35 32 35-49 22 27 50-64 20 20 65+ 23 21 Total 100 100 Source: NARPDCA administrative data as of December 31, 2012 and March 31, 2020. 400 Annexes Annex-Table 37: Capacity of community-based social services included in the Registry of Social Services, as of December 31, 2019 Public Private Total Centers for independent living 5 44 49 Centers for community and training services 0 0 Respite centers/crisis centers 47 47 Supportive housing 765 344 1,109 Home care services 281 36 317 Home care services for adults with disabilities provided by the mobile 110 644 754 team Day centers 593 1,760 2,353 Outpatient centers for neuromotor recovery services 656 54 710 Source: Registry of Social Services, MLSP. Annex-Table 38: Number of public social services as of June 31, 2015-2020 2015 2016 2017 2018 2019 2020 Residential services (excluding CACs, 110 120 122 143 146 153 COTBIs, RRCs) Supportive housing 100 113 116 133 137 144 Centers for independent living 3 2 1 3 3 3 Respite centers 3 3 3 4 4 4 Crisis centers 4 2 2 3 2 2 Non-residential services 56 60 61 63 64 58 Day centers 19 20 23 24 25 26 Occupational centers 2 2 1 2 2 2 Outpatient centers for neuromotor recovery 28 29 28 29 29 25 services Mobile team 1 1 1 1 1 1 Home care services 2 2 2 2 2 2 Psychosocial counseling centers for persons 4 6 6 5 5 2 with disabilities Centers for social recovery and integration- 0 0 0 0 0 0 neuromotor recovery Total (excluding CACs, COTBIs, and RRCs) 166 180 183 206 210 211 Source: NARPDCA data. 401 Annexes Annex-Table 39: Number of beneficiaries in public social services as of June 31, 2015-2020 2015 2016 2017 2018 2019 2020 Residential services (excluding CACs, 893 938 977 980 1,044 1,107 COTBIs, RRCs) Supportive housing 851 882 909 919 983 1,038 Centers for independent living 25 21 10 35 29 40 Respite centers 7 16 3 4 8 7 Crisis centers 10 19 55 22 24 22 Non-residential services 1,889 2,183 2,192 2,184 1,971 1,634 Day centers 710 752 667 568 525 569 Occupational centers 49 51 29 64 66 61 Outpatient centers for neuromotor recovery 1,008 1,269 1,314 1,329 1,258 878 services Mobile team 0 0 0 22 23 20 Home care services 42 43 52 67 85 88 Psychosocial counseling centers for persons 80 68 130 134 13 18 with disabilities Centers for social recovery and integration- 0 0 0 0 0 0 neuromotor recovery Total (excluding CACs, COTBIs, and RRCs) 2,782 3,121 3,169 3,164 3,015 2,741 Source: NARPDCA data. Annex-Table 40: Cumulative percentage of municipalities based on the share of persons with personal assistants in the total number of persons benefiting from personal assistants or caregiver allowance Cumulative percentage of persons with Number of persons with disabilities benefiting from personal assistants in the total population personal assistants or caregiver allowance in the opting for either a personal care assistant municipality or a caregiver allowance >=0 >=10 >=20 >=30 >=40 >=50 0 percent 6 5 4 4 4 3 0.1-10 percent 9 9 8 8 8 8 10.1-20 percent 20 19 19 20 21 23 20.1-30 percent 34 34 35 37 39 44 30.1-40 percent 50 49 51 54 57 62 40.1-50 percent 66 66 68 72 74 77 50.1-60 percent 79 79 81 84 85 88 60.1-70 percent 88 88 90 93 94 95 70.1-80 percent 95 95 96 98 98 98 80.1-90 percent 98 99 99 100 100 100 90.1-99 percent 99 99 100 100 100 100 100 percent 100 100 100 100 100 100 Average percentage 41 41 40 39 37 36 Number of municipalities 3,082 2,930 2,522 1,986 1,515 1,097 Source: GDSACP data, except for the counties of Ialomița and Ilfov. Note: Regarding the shaded table cell, in 35 percent of municipalities with at least 20 persons who benefit from personal assistants or a caregiver allowance, only up to 30 percent of persons with disabilities have opted for a personal assistant. 402 Annexes Annex 8. Education Annex-Figure 1: Number of students enrolled in special education at the primary and middle school levels nationwide, 1995-2019 40000 Total Special education middle schools Special education primary schools 35000 30000 25000 20000 15000 10000 5000 0 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Source: World Bank calculations using NIS data. Annex-Table 41: Percentage of middle schools that are physically accessible to people with exclusively locomotor disabilities, 2020 Total Urban Rural With adapted, reserved, or marked parking or with no parking 85 91 83 With an accessible access path to the building 80 85 78 With an accessible access ramp or with no need for one 35 42 33 With an accessible entrance to the building 33 44 29 With accessible corridors 92 92 92 With accessible interior doors 92 91 92 With an accessible reception counter or with no counter 95 98 95 With an accessible elevator/lifting platform/sidewalks or escalators or 34 23 38 with no need for them With accessible bathrooms 2 4 1 Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020 on a nationally representative sample of middle schools (weighted data). 403 Annexes Annex-Table 42: Percentage of middle schools with accessible access path to the building and entrance, 2020 Total Urban Rural Accessible access path to building 15 19 14 In process of building access path identifiable from the areas adjacent 85 88 83 to the building Accessible building access path with no obstacles 89 94 87 Properly marked access path to the building door (incl. tactile carpet/ 16 23 14 paving) Accessible entrance to the building 13 20 10 The door sill is appropriate 73 81 71 The door can be opened with a closed fist 69 78 67 The door opening is appropriate 98 99 97 There is enough maneuver space in front of the door 87 93 85 There is tactile-visual information near the emergency exits 28 32 27 The front door is not made of glass or is marked accordingly 95 92 96 All entrances are accessible or signs for the accessible entrances are 63 64 62 marked on the inaccessible entrances Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020 on a nationally representative sample of middle schools (weighted data). Annex-Table 43: Percentage of middle schools with accessible access ramp to the building, 2020 Ramp does Yes No not exist Total (although needed) Total Access ramp is accessible or not needed * 21 79 100 The access ramp exists 89 11 100 The ramp is at the main entrance or there are markings to 74 15 11 100 identify it The angle of the ramp is appropriate or there are ways to 82 7 11 100 assist users to use the ramp The width of the ramp is appropriate 83 5 11 100 The ramp has a handrail 43 46 11 100 The ramp has enough maneuver space 71 18 11 100 The surface of the ramp is covered with non-slip material 39 50 11 100 The ramp is no longer than 10m or has a rest area 88 1 11 100 The ramp has tactile-visual warning surfaces at the 8 81 11 100 beginning and end 404 Annexes Ramp does Yes No not exist Total (although needed) Urban Access ramp accessible is or not needed ** 17 83 0 100 The access ramp exists 96 4 100 The ramp is at the main entrance or there are markings to 83 13 4 100 identify it The angle of the ramp is appropriate or there are ways to 93 4 4 100 assist users to use the ramp The width of the ramp is appropriate 90 6 4 100 The ramp has a handrail 58 39 4 100 The ramp has enough maneuver space 82 14 4 100 The surface of the ramp is covered with non-slip material 58 38 4 100 The ramp is no longer than 10m or has a rest area 95 1 4 100 The ramp has tactile-visual warning surfaces at the 13 83 4 100 beginning and end Rural Access ramp is accessible or not needed *** 22 78 0 100 The access ramp exists 86 14 100 The ramp is at the main entrance or there are markings to 71 15 14 100 identify it The angle of the ramp is appropriate or there are ways to 79 8 14 100 assist users to use the ramp The width of the ramp is appropriate 81 5 14 100 The ramp has a handrail 38 48 14 100 The ramp has enough maneuver space 67 19 14 100 The surface of the ramp is covered with non-slip material 32 54 14 100 The ramp is no longer than 10m or has a rest area 85 1 14 100 The ramp has tactile-visual warning surfaces at the 6 81 14 100 beginning and end Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020 on a nationally representative sample of middle schools (weighted data). Note: * A ramp is not necessary in 17 percent of middle schools where the entrance is at ground level. ** A ramp is not necessary in 11 percent of urban middle schools. *** A ramp is not necessary in 19 percent of rural middle schools. 405 Annexes Annex-Table 44: Percentage of middle schools with accessible corridors, interior doors, and toilets, 2020 Total Urban Rural Accessible corridors 92 92 92 The corridors give access to all areas necessary to pursue the activity of 94 94 94 the institution [check] If there are any long corridors, they have an area where people in 98 98 98 wheelchairs can change direction/pass each other Accessible interior doors 68 74 66 There is enough maneuver space 94 95 94 Doors on the accessible path are marked accordingly or are of a 70 77 68 different color to the wall in which they are located The doors are not made of glass or are marked accordingly 97 96 97 Accessible toilets 2 4 1 The toilets are accessible 60 63 59 The toilets are on accessible paths 52 55 51 The toilet door opens to the outside 37 42 36 The interior space is appropriate 49 53 48 The toilet floor is non-slip when wet 34 39 33 There are accessible alarm systems inside the toilet 4 6 4 Sanitary ware and accessories are placed at an appropriate height 58 60 57 The toilet bowl is equipped with transfer bars 38 49 35 Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020 on a nationally representative sample of middle schools (weighted data). Annex-Table 45: Number of accredited and authorized courses on teaching children with SEN/disabilities organized by the Teacher Training Centers, school year 2018-2019 Courses on teaching children with Total TTC courses SEN/disabilities Percent participants Average at courses Number of Number of number of Number of Number of on the County courses participants training courses participants education hours of children with SEN/ disabilities Arad 4 282 78 19 1,015 28 Argeș 4 335 34 54 2,816 12 Bacău 1 25 100 14 1,839 1 Bihor 6 849 27 40 2,745 31 Bistrița-Năsăud 1 411 384 20 1,373 30 Botoșani 6 875 47 39 3,634 24 Brașov 2 254 45 47 1,117 23 Brăila 5 259 70 53 1,897 14 Bucharest 2 450 53 40 5,669 8 Caraș-Severin 4 169 43 48 2,979 6 406 Annexes Courses on teaching children with Total TTC courses SEN/disabilities Percent participants Average at courses Number of Number of number of Number of Number of on the County courses participants training courses participants education hours of children with SEN/ disabilities Călărași 4 156 60 9 946 16 Cluj 2 211 60 28 1,225 17 Constanța 10 361 12 37 1,838 20 Covasna 6 105 34 43 1,235 9 Dâmbovița 2 67 63 35 1,608 4 Dolj 11 468 24 85 4,217 11 Galați 2 127 28 20 1,123 11 Gorj 2 56 24 41 2,208 3 Harghita 5 322 27 43 2,504 13 Hunedoara 2 51 158 30 960 5 Ialomița 1 75 89 19 1,162 6 Iași 2 148 60 85 2,071 7 Ilfov 1 47 24 40 500 9 Maramureș 5 407 39 5 455 89 Mehedinți 2 84 24 25 1,053 8 Mureș 4 276 83 12 1,126 25 Neamț 1 108 60 53 4,040 3 Olt 6 398 53 68 2,796 14 Prahova 2 65 42 35 2,741 2 Satu Mare 2 88 27 36 1,273 7 Sălaj 1 50 82 17 807 6 Sibiu 4 218 54 22 1,538 14 Suceava 4 306 33 26 2,838 11 Teleorman 2 56 30 29 1,017 6 Timiș 2 43 42 27 1,358 3 Tulcea 5 112 40 42 650 17 Vaslui 2 176 250 11 890 20 Vâlcea 3 201 24 69 3,627 6 Vrancea 2 215 53 11 752 29 Total 132 8,906 49 1,377 73,642 12 Source: World Bank calculations using administrative data reported by TTCs. 407 Annexes Annex-Table 46: Number of universities that have specific policies for students with disabilities, 2020 Responding Number universities Universities with provisions for adapting teaching and examination 13 31 methods to the needs of students with disabilities Universities with an internal department that draws up and integrates proposals for ensuring the accessibility of the environment and 12 30 educational content for students with disabilities Universities with an allocation quota for the number of places for students 5 32 with disabilities as a percentage of the number of available places Universities with an allocation quota for the number of accommodation places for students with disabilities as a percentage of the number of 10 32 available accommodation places Source: Calculations made by the World Bank using data from a survey on an opportunity sample of public and private universities. Annex-Table 47: Accommodation offered by universities for students with disabilities, 2020 Responding Percentage Number universities Universities with an allocation quota for the number of accommodation places for students with disabilities as a 10 32 percentage of the number of available accommodation places Accessible accommodation as a percentage of all 3 48 accommodation places for people with locomotor disabilities 2 38 for people with visual impairments 0 0 for people with hearing impairments 1 15 Source: Calculations made by the World Bank using data from a survey on an opportunity sample of public and private universities. Annex-Table 48: Number of universities with accessible website/e-learning platform, 2020 Responding Number universities Universities with a website accessible to people with disabilities 6 33 Universities with an e-learning platform that can also be used by students 11 30 with visual impairments in all universities with e-learning platforms Source: Calculations made by the World Bank using data from a survey on an opportunity sample of public and private universities. 408 Annexes Annex-Table 49: Percentage of university study buildings with various facilities for students with disabilities, 2020 Study buildings with... Percentage … accessible entrance to the building 70 ... adequate access ramp or no need for a ramp 26 ... adapted parking, reserved, or marked parking or with no parking spaces 67 ... elevator or single floor 38 ... reception counters/offices for public access where at least one counter is accessible 14 ... at least one accessible toilet 22 Source: Calculations made by the World Bank using data from a survey on an opportunity sample of public and private universities. 409 Annexes Annex 9. Health Annex-Table 50: Percentage of people who self-assess their health as good or very good, 2017/2018 (percent) Persons... Without disabilities With disabilities Age 16-34 98 76 35-49 94 59 50-64 81 30 65+ 55 10 Educational level Lower secondary school 84 19 attained by 2017/2018 or lower level High school/Post- 90 32 secondary school Higher education 93 52 EU countries Romania 88 21 Lithuania 63 5 Bulgaria 78 9 Latvia 72 9 Malta 84 10 Poland 75 10 Hungary 77 11 Portugal 68 12 Croatia 84 14 Czech Republic 80 16 Estonia 75 16 Greece 95 17 Spain 88 17 Slovakia 89 18 Sweden 82 21 France 83 23 Cyprus 95 25 Slovenia 84 25 Italy 89 25 Luxembourg 85 25 Belgium 91 26 Denmark 86 28 Finland 86 33 Austria 92 33 Netherlands 93 34 Republic of Ireland 93 36 Source: World Bank calculations based on EU-SILC data. 410 Annexes Annex-Table 51: Persons whose medical needs were not met during the previous 12 months as a percentage of all persons with such needs, 2017/2018 (percent) Persons... Without With some With severe disabilities disabilities disabilities Age (2017/2018 16-34 (1) (14) * data) 35-49 1 14 44 50-64 2 17 38 65+ 4 19 39 Educational Lower secondary school or lower 2 22 42 attainment level level High school/Higher lower secondary (2017/2018 1 15 34 school data) Higher education (1) 10 (42) Type of Cities 1 12 37 locality Towns 2 20 41 (2017/2018 data) Rural areas 2 19 39 Income Poorest 20 percent 2 30 55 quintile groups Q2 2 22 42 (2017/2018 data) Q3 2 19 46 Q4 2 16 30 Wealthiest 20 percent 1 11 29 EU countries Romania 2 18 42 (2018 data) Greece 21 24 29 Estonia 13 28 29 Latvia 8 21 28 Denmark 4 11 23 Poland 14 16 17 Finland 5 12 16 Slovakia 4 9 16 Sweden 7 12 14 Bulgaria 5 8 12 Lithuania 3 5 11 Slovenia 4 6 10 Republic of Ireland 2 5 10 Croatia 5 7 8 Hungary 8 10 8 Italy 5 7 8 Belgium 2 5 7 Portugal 2 6 7 Netherlands 2 3 6 Cyprus 2 2 3 France 4 4 3 Czech Republic 3 3 3 Malta 1 2 2 Luxembourg 1 1 2 411 Annexes Persons... Without With some With severe disabilities disabilities disabilities EU countries Austria 0 1 2 (2018 data) Spain 0 1 1 Source: World Bank calculations based on EU-SILC data. Note: * Unreported values because the number of cases in the sample for the numerator is less than 20. The sample size for the numerator of the percentage presented in parentheses is between 20 and 49, which makes the estimated value unreliable. Annex-Table 52: Main reason why people in need have not benefited from consults delivered by a specialist doctor, 2017/2018 (percent) Persons... Without With some With severe disabilities disabilities disabilities Cannot afford the costs 46 49 55 Registered on a waiting list 12 12 12 Long distance or lack of transportation 3 5 12 Waited for the problem to solve by itself 16 17 6 Other reason 23 17 15 Total 100 100 100 Source: World Bank calculations based on EU-SILC data. Annex-Table 53: Percentage of healthcare facilities equipped with beds that have procedures in place to facilitate access to their services, 2020 Percent The internal rules and regulations include provisions on non-discriminatory access to 97 healthcare There are specific training sessions for staff exposed to aggressive behavior from 87 patients/carers The hospital regulates the method for providing healthcare to patients when they 86 cannot give consent The hospital has a system for displaying information on providers of rehabilitation, 82 home-based care, and terminal care The hospital has planned training sessions on the relationship between staff and 80 patients and on providing care to patients with disabilities or with special needs The hospital regulates methods for containing and/or isolating aggressive patients 78 The hospital cooperates with specialist organizations in order to provide care and 75 relate to patients with disabilities and patients with special needs The hospital regulates the method for taking and dealing with patients with 70 psychological-behavioral and socioeconomic-specific traits The hospital provides age-appropriate educational facilities for children who are 65 hospitalized for longer periods The hospital has a partnership/cooperation with social assistance services in order 59 to ensure continuity of care The psychological-behavioral and socioeconomic-specific traits of the patient that may affect the outcome of the healthcare provided are noted in the observation 34 chart Source: National Authority of Quality Management in Health (NAQMH). Note: Out of the total number of facilities evaluated in June 2020 (N=228). 412 Annexes Annex 10. Social participation Annex-Table 54: Accessibility of performance spaces, museums, and libraries as assessed during a NAPSI special thematic inspection, 2020 Museums and Performance spaces libraries Number Percentage Number Percentage Institutions with inadequate ramps, out of all 41* 39.0 46** 26.4 institutions that should be equipped with ramps Institutions with no ramps, although they should be 19* 18.1 68** 39.1 equipped with ramps Inaccessible front doors 8 6.3 23 11.6 Inaccessible ticket-checking areas 20 18.7 Inaccessible hallways 5 3.9 10 4.0 No accessible restrooms 87 68.5*** 153 76.9**** Inaccessible elevator/platform/moving walkway 1 1.8*** 5 4.5**** No elevator/platform/moving walkway 35 63.6 63 56.8 No places reserved for persons with disabilities 78 61.4 122 61.3 No accessible parking places 87 68.5 No visual and auditory warning systems 79 62.2 133 66.8 No tactile and visual warning surfaces 90 70.9 160 80.4 Inaccessible information counters 12 9.4 24 12.1 No pictograms 74 58.3 139 69.8 No information boards 13 10.2 29 14.6 No sign language interpreter 173 86.9 No books in accessible formats 54 27.1 Total number of entities with at least one 122 197 accessibility issue Total number of inspected institutions 127 199 Source: Calculations made by the World Bank using data from an inspection campaign conducted by NAPSI in March-August 2020. Notes: * Number of performance spaces that need ramps to ensure access into the building = 105. ** Number of museumsandlibrariesthatneedrampstoensureaccesstothebuilding=174.***Numberofperformancespaces thatneedanaccessibleelevator/platform/movingwalkway=55.****Numberofmuseumsandlibrariesthatneed an accessible elevator/platform/moving walkway = 111. Annex-Table 55: Proportion of persons involved in at least one organization or association by disability level (percent) Persons… Urban Rural Women Men Without disabilities 21 15 16 21 With some disabilities 13 8 10 12 With severe disabilities 10 4 7 9 Source: World Bank survey of persons with and without disabilities (2020). 413 Annexes Annex-Table 56: Proportion of persons involved in at least one organization or association by type of organization and by disability level (percent) Persons... Without With some With severe disabilities disabilities disabilities Political party 5 2 2 Educational or cultural organizations 3 2 1 Sport or recreation organizations 4 1 0 Professional or business organizations (trade unions, 5 1 1 employers’ organizations etc.) Social organizations (humanitarian/charitable, civic 5 2 2 organizations) Environmental organizations 3 1 1 Local initiative groups 3 1 1 Landlord/tenant associations 5 3 2 Associations of persons with disabilities 1 1 2 Source:WorldBanksurveyofpersonswithandwithoutdisabilities(2020). Annex-Table 57: Number and percentage of registered NGOs and foundations working for persons with disabilities Number of Percentage of registered NGOs/ registered NGOs/ foundations foundations Total Urban Rural Urban Rural Total Total 6,030 5,043 987 84 16 100 Area Urban 5,043 0 0 100 Rural 987 0 0 100 Public interest entity Yes 25 24 1 96 4 100 No 6,005 5,019 986 84 16 100 Development region Northeast 750 612 138 82 18 100 Southeast 518 431 87 83 17 100 South-Muntenia 748 537 211 72 28 100 Southwest Oltenia 316 267 49 84 16 100 West 569 478 91 84 16 100 Northwest 903 756 147 84 16 100 Center 843 696 147 83 17 100 Bucharest-Ilfov 1,383 1,266 117 92 8 100 414 Annexes Number of Percentage of registered NGOs/ registered NGOs/ foundations foundations Total Urban Rural Urban Rural Total Counties Alba 86 74 12 86 14 100 Arad 156 130 26 83 17 100 Argeș 121 96 25 79 21 100 Bacău 163 134 29 82 18 100 Bihor 144 107 37 74 26 100 Bistrița-Năsăud 43 33 10 77 23 100 Botoșani 42 35 7 83 17 100 Brașov 216 187 29 87 13 100 Brăila 86 81 5 94 6 100 Bucharest 1,186 1,186 0 100 0 100 Buzău 55 35 20 64 36 100 Caraș-Severin 22 19 3 86 14 100 Călărași 55 39 16 71 29 100 Cluj 431 369 62 86 14 100 Constanța 177 150 27 85 15 100 Covasna 53 36 17 68 32 100 Dâmbovița 282 189 93 67 33 100 Dolj 136 120 16 88 12 100 Galați 115 99 16 86 14 100 Giurgiu 37 23 14 62 38 100 Gorj 46 39 7 85 15 100 Harghita 120 93 27 78 23 100 Hunedoara 121 113 8 93 7 100 Ialomița 28 24 4 86 14 100 Iași 291 247 44 85 15 100 Ilfov 197 80 117 41 59 100 Maramureș 170 148 22 87 13 100 Mehedinți 17 15 2 88 12 100 Mureș 204 157 47 77 23 100 Neamț 60 51 9 85 15 100 Olt 29 21 8 72 28 100 Prahova 177 126 51 71 29 100 Satu Mare 38 33 5 87 13 100 Sălaj 77 66 11 86 14 100 Sibiu 164 149 15 91 9 100 Suceava 158 113 45 72 28 100 Teleorman 48 40 8 83 17 100 Timiș 270 216 54 80 20 100 Tulcea 36 28 8 78 22 100 Vaslui 36 32 4 89 11 100 Vâlcea 88 72 16 82 18 100 Vrancea 49 38 11 78 22 100 Source: World Bank calculations based on data from the “Scope” section of the National NGO Registry. 415 Annexes Annex 11. Implementation of the CRPD and monitoring the observance of the rights of persons with disabilities Annex-Table 58: Number of disability-related complaints made and settled and fines applied, 2019 Number of complaints Settled by Number of ascertaining fines Total Settled “rights violations” Total 96 88 18 5 Discrimination concerning access to education 17 16 5 2 Discrimination concerning access to public health 4 4 1 0 services Discrimination concerning access to the labor 12 11 3 0 market Discrimination concerning the exercise of the right to 0 0 0 0 vote Discrimination concerning access to culture 0 0 0 0 Discrimination concerning access to public 23 20 4 0 administrative services Discrimination concerning the public legal services 2 2 0 0 Discrimination concerning access to banking 0 0 0 0 services Discrimination concerning access to community 0 0 0 0 social services for persons with disabilities Discrimination concerning access to housing 3 3 1 1 Discrimination concerning access to public transport 5 4 1 1 services Discrimination concerning access to public places 10 9 2 1 Other fields 4 4 0 0 Source: NCCD. Annex-Table 59: Residential facilities visited by the National Prevention Mechanism and the Monitoring Council, 2019 National Mechanism for the Prevention of Monitoring Council Torture Public residential centers 37 80 Private residential centers 6 3 Psychiatric hospitals 9 4 Psychiatric units 0 Medical-social units 1 Penitentiaries 10 Police custody facilities 11 Centers for asylum seekers and refugees 5 Total Source: National Mechanism for the Prevention of Torture (Romanian Ombudsman) and the Monitoring Council. 416 Annexes Annex-Table 60: Recommendations made by the National Prevention Mechanism following the monitoring visits conducted in 2019 Number of cases Total number of institutions visited 53 Type of recommendations Organize staff training sessions on how to recognize cases and forms of 22 torture and cruel, inhuman, or degrading treatment Organize information sessions for residents on protecting themselves against forms of torture, cruel, inhuman, or degrading treatment 11 (recognition and reporting) Organize staff training sessions in de-escalation techniques as an alternative 17 to isolation and containment (physical, mechanical, or chemical) Develop a procedure to assess triggering factors and those that could soothe a crisis in order to determine the methods of intervention preferred 8 by the resident in crisis situations Record cases of isolation and containment (type, duration etc.) and report to the management of that institution as well as to any relevant external 11 institution Develop clear procedures for obtaining the consent of a person with disabilities for any medical treatment, including electroconvulsive therapy, as 6 well as for irreversible treatments and procedures, such as psychosurgery, abortions, and sterilization Ensure that persons with disabilities have effective access to complaint mechanisms, such as the People’s Advocate, the Monitoring Council, and 2 NGOs, including by informing residents about them using an accessible format Provide persons with disabilities with access to support persons/ representatives (for example, psychiatric patients have the option of having a conventional representative) to keep residents informed about their rights 3 and support them in the exercise of their rights, including by helping them to find an effective remedy if they have been subjected to torture or cruel, inhuman, or degrading treatment Notify the Prosecutor’s Office if signs of trauma are evident and be present 1 at any forensic examination Inform the bodies authorized by the center when there is a suspicion of a 1 criminal act Complete the register of cases of torture and cruel, inhuman, or degrading treatment and the register of cases of abuse, neglect, exploitation, and 3 discrimination against the beneficiary Update the consent form in accordance with Annex no. 1 of Order no. 2 488/2016 of the Ministry of Health Keep a register of special events/incidents in which to record any aggression or self-aggressions while also ensuring that the psychologist 2 continuously monitors these residents and providing the specialist interventions necessary to detect and reduce such negative behavior Accommodate facilities for people with motor disabilities in hallways and bathrooms (for example, access roads, ramp, elevator, support bars, special 13 toilet seats, non-slip mats in showers) Keep a special register of signs of physical trauma or physical marks and signs of ill-treatments or physical marks and signs and of ill-treatment, 4 abuse, or torture 417 Annexes Number of cases In psychiatric hospitals, ensure that patients are kept in observation/ safe rooms in the immediate vicinity of the medical offices allows for their permanent surveillance by the medical staff and their prompt intervention 2 when needed while at the same time respecting their fundamental human right to privacy Provide ongoing professional training to medical staff in accordance with 3 the provisions of the CRPD Reverse the ban on the right of patients in safe rooms to remain in possession of their personal mobile phones and explore the possibility of 1 installing a landline phone for patients to use confidentially Source: National Mechanism for the Prevention of Torture. 418 Project co-funded from the European Social Fund through the Administrative Capacity Operational Program 2014-2020 Project title: “Consolidating the Coordination Mechanism to Implement the United Nations Convention on the Rights of Persons with Disabilities” Project code: SIPOCA 619/MySMIS 127534 Name of beneficiary: National Authority for the Rights of Persons with Disabilities, Children and Adoptions Date of publishing: September 2021 The content of this material does not necessarily represent the official position of the European Union or of the Romanian Government. 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