ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Ministerul Muncii și Protecției Sociale Ministerul Muncii și Protecției Sociale Diagnosis Report on the Current Disability Assessment System Coordinators: Victor Sulla Manuel Salazar Manuela Sofia Stănculescu October 2021 1 ISBN: 978-606-93910-8-2 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 paper are entirely those of the authors and do not necessarily reflect the views of the World Bank, its Executive Directors, 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 complete information to: (i) the National Authority for the Rights of Persons with Disabilities, Children and Adoption (7 Gheorghe Magheru Avenue, Sector 1, Bucharest); or (ii) the World Bank Group in Romania (31 Vasile Lascăr Street, 6th floor, Sector 2, Bucharest, Romania). This report was delivered to the National Authority for the Rights of Persons with Disabilities, Children and Adoption in October 2021 under the Reimbursable Advisory Services Agreement on “Modernizing the Disability Assessment System in Romania” signed between the National Authority for Persons with Disabilities1 and the International Bank for Reconstruction and Development on August 26, 2019. It corresponds to Output #1 under the above-mentioned agreement: “Diagnosis report on the current disability assessment mechanism”. 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 Adoption – institution established through the Emergency Government Ordinance no. 68 of November 6, 2019, by taking over of activities, attributions, and structures of the National Authority for Persons with Disabilities (and of the National Authority for the Protection of Children Rights and Adoption), which was discontinued. 2 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Acknowledgements Output #1 under the Reimbursable Advisory by Ms. Ștefania Andreescu, the Project Manager Services Agreement on Modernizing the Disability on behalf of the Ministry of Labor and Social Assessment System in Romania was developed Protection. We also express our gratitude to Ms. under the supervision of Mr. Cem Mete, with Izabella Popa, who provided valuable inputs and overall guidance from Ms. Tatiana Proskuryakova, overall guidance on the theme of transition from respectively from Ms. Anna Akhalkatsi. childhood to adulthood with disabilities. Also, Data collection and report preparation activities the World Bank is grateful to all public employees were coordinated and co-authored by Mr. Victor who participated in the data collection process. Sulla, Mr. Manuel Salazar (team leaders), and The World Bank team would like to particularly Ms. Manuela Sofia Stănculescu. On behalf of the thank the current and former members of the World Bank, Mr. Vlad Grigoraș developed the Higher Commission, the chiefs and members of concept of the project. Mr. Jerome Bickenbach the Comprehensive Evaluation Services (from the provided invaluable guidance and contributions General Directorates for Social Assistance and Child from a comparative international perspective. The Protection), the presidents, members and secretaries document received contributions from a team of of the Evaluation Commissions (from the County experts comprising professional social workers, and Local Councils), and the mayors and social sociologists, psychologists, doctors, experts in workers of Public Services of Social Assistance from disability, and persons with disabilities. The selected localities, for their cooperation. following experts (in alphabetical order) contributed Also, the World Bank team would like to thank to data collection, analysis and report preparation: the NGOs for people with disabilities and all people Marta-Iozefina Bencze, Mihai Berteanu, Georgiana with disabilities who lent their support and shared Blaj, Diana Chiriacescu, Gabriela Comănescu, their experiences throughout the data collection Bogdan Corad, Luminița Daneș, Georgiana Ioniță, process. Monica Marin, Georgiana Pascu, Cerasela Nicoleta Predescu, Cristian Roșu, Atena Stoica, Daniela Equal opportunities and equity Tontsch and Andrei Zambor. All project activities were designed and The report was peer-reviewed by Aleksandra implemented for the equal benefit of boys and girls, Posarac and Veronica Silva Villalobos. Laurie men and women. The project team and experts Scherer edited the volume in English. Brenda Ryan received equal treatment, regardless of gender, created the design of this volume. ethnic origin, or other characteristics. The easy-to-read/ easy-to-understand version of the document was prepared by Roxana Damaschin- Sustainable development Țecu and Elisabeta Moldovan. Bogdan Anicescu provided the sign language interpretation of the During project implementation, the World Bank dissemination event. team aimed for a wise and effective use of resources The World Bank would like to acknowledge to protect the environment and ensure social the excellent cooperation, guidance and timely cohesion. Every citizen and institution should bear feedback provided by the ANDPDCA counterpart, in mind that sustainable development is the only in particular by Ms. Anna Neagoe RIP, Ms. Florica way to meet human needs without undermining Cherecheș (President), Ms. Monica Violeta Solomie, the integrity of natural systems and the future of Ms. Anca Roxana Ilie, Ms. Liliana Toader, Ms. Crina humanity. Gîrleanu, Ms. Daniela Oana Ambara, as well as Anna Maria Neagoe, Rest in Peace! We fondly remember Anna Maria Neagoe, director of the Directorate for the Protection of the Rights of Persons with Disabilities in ANDPDCA. With Anna’s passing, Romania’s disability sector has lost a pillar of stability. Anna was a consummate professional; she was deeply committed to her work to improve policies that have a direct impact on the lives of people with disabilities. This project was initiated by Anna, and the team dedicates its efforts and results to her lasting memory. 3 Content Executive summary 9 Introduction 23 Data and method 25 1. SCOPE OF THE STUDY 33 1.1. Legal framework 36 1.2. Institutional framework 38 1.2.1. The Governmental Institutions in Charge with the Disability Assessment in Romania 38 1.2.2. The NGOs for People with Disabilities in Romania 40 1.3. People with disabilities in Romania: National statistics 41 1.4. Analytical framework: Overview of Romania’s disability assessment system 44 1.5. Analytical lens: The ICF/UNCRPD 46 1.6. Romania in the world community: Disability assessment 52 2. OUTREACH REGARDING DISABILITY IN ROMANIA 55 2.1. How do people find out about the disability assessment system? 56 2.2. Information and communication practices regarding the disability assessment system 59 2.3. Adapting information and communication for “hard to reach” populations 62 Conclusions of Chapter 2 68 3. INTAKE AND REGISTRATION FOR DISABILITY CERTIFICATE 69 3.1. Intake and registration: An overview 70 3.2. Obtaining the medical documents 72 3.3. Obtaining the social inquiry from SPAS and compiling the application file 77 3.3.1. The Application File and Access Barriers 78 3.3.2. SPAS Operation Models and Practices for Conducting the Social Inquiry 81 3.3.3. The Instrument for Social Inquiry 84 3.4. Registering with SECPAH for disability assessment 86 3.4.1. Transferring Application Files from SPAS to SECPAH 88 3.4.2. Registering the File at SECPAH and Scheduling an Appointment for the Assessment Interview 89 3.4.3. Adapting Registration for “Hard to Reach” Population 94 Conclusions of Chapter 3 95 4 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 4. THE DISABILITY ASSESSMENT IN ROMANIA 97 4.1. The steps of the comprehensive disability assessment 98 4.1.1. Registering and Verifying Files with SECPAH 98 4.1.2 The Comprehensive Assessment Process for Adults 99 4.1.3. Adapting the Assessment Process for “Hard to Reach” Population 103 4.1.4. Transferring Application Files from SECPAH to CEPAH, and Information Management 103 4.2. The disability assessment procedure in Romania 104 4.2.1. Areas of Comprehensive Disability Assessment 104 4.2.2. Medical Assessment 105 4.2.3. Psychological Assessment 107 4.2.4. Social Assessment 109 4.2.5. Vocational or Professional Skills Assessment 110 4.2.6. Assessment of the Education Level 113 4.2.7. Assessment of Social Integration Level and Skills (Degree of Dependency) 115 4.2.8. Establishing Conclusions and Recommendations of the Comprehensive Assessment 116 4.3. Medical-psychosocial criteria 119 4.3.1. Overview of the Medical-Psychosocial Criteria 120 4.3.2. Medical-Psychosocial Criteria from the ICF Perspective 123 Conclusions of Chapter 4 128 5. THE DISABILITY DETERMINATION IN ROMANIA 133 5.1. The steps of the disability determination 134 5.1.1. Sending the Files from SECPAH to CEPAH 134 5.1.2 The Process for the Classification of Adults in a Disability Degree 135 5.1.3. Adapting the Determination Process for “Hard to Reach” Population 139 5.1.4. Communication of the Result and Delivery of Documents to Beneficiaries 140 5.2. The disability determination procedure in Romania 141 5.2.1. Entries from SECPAH 141 5.2.2. How the Assessment Commissions Work 142 5.2.3. How Are the Solutions for the Disability Degree Classification/Non-classification Determined 146 5.2.4. Exclusion Errors and Inclusion Errors 149 5.2.5. The Feedback Loop of the Decision-Making Process within CEPAH 150 5.3. The results of the disability determination 151 5.3.1. Classification/Non-Classification into a Disability Degree and Type 152 5.3.2. Individual Social Rehabilitation and Integration Program (PIRIS) 156 Content I 5 5.3.3. Professional Orientation Certificate 157 5.3.4. Granting Protective Measures 157 5.4. The need for reform of the disability assessment and determination system in Romania 158 Conclusions of Chapter 5 159 6. IDENTIFYING THE NEED FOR SERVICES 163 6.1. Identifying the need for services: An overview 164 6.2. The Individual Rehabilitation and Social Integration Program (PIRIS) 165 6.3. Individual Service Plan (PIS) 171 Conclusions of Chapter 6 179 7. APPEALS AGAINST DISABILITY CERTIFICATES 183 7.1. Information regarding appeals 186 7.2. Key reasons to appeal 190 7.3. Registering appeals 193 7.4. Appealing disability certificates 194 7.4.1. Duration of the Litigation 194 7.4.2. Legal Assistance in Court 195 7.4.3. No Homogeneous Evidence Procedures at Court Level 197 7.4.4. Court Substantiations when Rulings Favor People with Disabilities 201 7.4.5. No Information or Specialty Support at Court Level 206 7.4.6. Statistics Regarding the Certificate Appeal Process 209 7.5. Profile of those who appeal the disability certificate and win 212 Conclusions of Chapter 7 213 8. YOUNG PEOPLE WITH DISABILITIES: THE TRANSITION TO ADULT LIFE 217 8.1. Preparing for the transition to adult life and gathering the file 218 8.2. The comprehensive assessment of young people with disabilities compared to that for adults 222 8.3. Determining disability in young people 225 8.4. Support measures for transitioning young people with disabilities to adult life 227 8.5. Scenarios for reforming the transition from childhood to adulthood 230 Conclusions of Chapter 8 232 9. INSTITUTIONAL ASPECTS 235 9.1. SPAS: Public services of social assistance within communities 236 9.1.1. Human Resources of SPAS 236 9.1.2. Training of SPAS Personnel 240 6 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 9.1.3. SPAS Data Management and Information System 240 9.1.4. Material Resources 242 9.2. SECPAH: Services for Comprehensive Assessment of Adults with Disabilities 243 9.2.1. Human Resources of SECPAH 243 9.2.2. Training of SECPAH Personnel 250 9.2.3. Procedures for Disability Assessment: An Overview 251 9.2.4. SECPAH’s Data Management and Information System 253 9.2.5. Material Resources 256 9.3. CEPAH: Commission for Assessing Adults with Disabilities 256 9.3.1. CEPAH’s Human Resources 256 9.3.2. Training of CEPAH Members 263 9.3.3. CEPAH Secretariat 263 9.3.4. Procedures for Disability Determination: An Overview 264 9.3.5. CEPAH’s Data Management and Information System 265 9.3.6. Material Resources 267 Conclusions of Chapter 9 268 10. CONCLUSIONS AND RECOMMENDATIONS 273 10.1. Challenges and binding constraints to adopting a holistic approach to disability assessment and determination 273 10.2. Key policy recommendations 278 REFERENCES 285 ANNEXES 287 Annex 1. List of interviewed NGOs 287 Annex 2. Key regulations in the field of disability 288 Annex 3. NGOs for persons with disabilities in Romania 289 Annex 4. Outreach 294 Annex 5. Comprehensive assessment by SECPAH 296 Annex 6. Example of an Individual Service Plan (PIS) 299 Annex 7. Profile of persons who filed appeals and won 300 Annex 8. Support measures for transitioning young people with disabilities to adult life 302 LIST OF FIGURES AND TABLES 303 Content I 7 Acronyms and Abbreviations23 ADL activity of daily living AJOFM The County Agency for Employment ALOFM The Local Agency for Employment ANDPDCA National Authority for the Rights of Persons with Disabilities, Children and Adoption ANOFM The National Agency for Employment ANPD National Authority for Persons with Disabilities 2 CEPAH Commission for Assessing Adults with Disabilities CJRAE County Center for Educational Resources and Assistance CPC Commission for Child Protection CSEPAH Higher Commission for Assessing Adults with Disabilities DAS Direction for Social Assistance DGASPC General Directorate for Social Assistance and Child Protection EGO Emergency Government Ordinance GD Government Decision IADL instrumental activity of daily living ICD International Classification of Diseases ICF International Classification of Functioning, Disability and Health ICF-CY International Classification of Functioning, Disability and Health for Children and Youth IML Forensic Medicine Institute ISJ County School Inspectorate M&E monitoring and evaluation MMPS Ministry of Labor and Social Protection NGO nongovernmental organization PAR Plan for the Empowerment and Rehabilitation of Children with Disabilities PIRIS Individual Rehabilitation and Social Integration Program PIS Individual Service Plan PRM physical and rehabilitation medicine PwD person with disabilities RAS Reimbursable Advisory Services SECC Service for Comprehensive Assessment of Children with Disabilities SECPAH Service for Comprehensive Assessment of Adults with Disabilities SEN special educational needs SPAS Public Service for Social Assistance3 UN United Nations Organization UNCRPD United Nations Convention on the Rights of Persons with Disabilities WB World Bank WHO World Health Organization WHODAS 2.0 WHO Disability Assessment Schedule 2.0 2 ANPD has been taken over by the ANDPDCA, through EGO no. 68 of November 6, 2019. 3 In this report, SPAS is used generically for all forms of public social assistance services set up in municipalities, cities, and communes in Romania (DAS, Direction for Social Assistance; SPAS, Public Service for Social Assistance or Compartment, as per GD no. 797/2017). 8 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Executive summary4 Background and objectives The International Classification of Functioning, understanding of how the disability assessment Disability and Health (ICF) provides a globally system currently works in Romania and its role in recognized framework for classifying and referring persons with disabilities to services and measuring disability. There is broad recognition benefits that can meet their needs. among experts that Romania should reform its The existing legislation suggests that disability disability assessment and determination process, assessment and determination should be based on and align it with the ICF standards. The country a medico-psychosocial model. Existing legislation has attempted to do so over the past decade, though stipulates that persons with disabilities shall largely without success. Therefore, the Government enjoy rights based on their degree of disability. of Romania, and specifically the National Authority Following the ICF model, it states that disability for the Rights of Persons with Disabilities, Children level is determined based on medico-psychosocial and Adoption (ANDPDCA), has engaged the World criteria that cover three dimensions: (i) Functional Bank through a Reimbursable Advisory Services Parameters (medical criteria); (ii) Activities— (RAS) Agreement to support the modernization of Limitations; and (iii) Participation—Needs. Recent the country’s disability assessment system. legislative updates are almost exclusively focused The objective of this RAS is to enhance the on the medical criteria. capacity of the ANDPDCA to develop, adopt, and However, many disability experts in Romania implement a new disability assessment system. share an understanding that the country’s disability The project aims to provide the necessary support assessment process remains predominantly based to (i) systematize legislation in the field of disability on medical criteria. The analysis presented in this assessment in Romania by revising it according report validates this assumption by systematically to modern approaches for evaluating disabilities analyzing all aspects of the existing disability (those that follow the ICF framework); and (ii) assessment system from the ICF perspective. The foster a change in the paradigm (going from an assessment analyses the processes and instruments impairment to a disability approach)5 by building used to conduct the assessment, related protocols the capacity of public servants involved in the and procedures, and the link between the disability disability assessment process at all levels.6 assessment and the social protection system. The This diagnosis report aims to take stock of the analysis provides an in-depth understanding existing disability assessment mechanism and of how Romania’s disability assessment system processes in Romania. It identifies challenges and currently works and its role in referring persons successes and determines how to adjust the system with disabilities to services and benefits that can going forward in the ICF framework, considering meet their needs. Finally, the report proposes international best practices and lessons learned. changes to modernize the disability system and Specifically, the analysis provides an in-depth align it to the ICF standards. 4 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 5 Bickenbach et al. (2015). 6 This RAS involves activities that will result in analytical outputs and ongoing technical assistance, as well as capacity building. The seven outputs include (i) diagnosis report on the current disability assessment mechanism; (ii) proposed set of medico-psycho- social criteria for disability assessment; (iii) proposed working instruments for a modernized disability assessment; (iv) report on the recommendation of a comprehensive assessment procedure of people with disabilities; (v) mid-pilot report on recommendations on disability determination and needs assessment; (vi) technical recommendations to facilitate specific expertise in disability assessment for court cases; and (vii) final report on recommendations on disability determination and needs assessment. Executive summary I 9 Methodological framework and data collection Many high-resource countries have developed towards introducing the ICF principles, and the advanced, modern disability systems based ICF framework should be utilized as a governing on ICF principles. Countries such as Taiwan, principle at all stages of the assessment. South Korea, France, England, Canada, and The disability assessment system is approached the Nordic countries have created complex, in this report using the framework of social multistage disability assessment procedures with protection delivery systems as defined in the instrumentation based on the ICF conceptualization World Bank’s Sourcebook on the Foundations of of disability that fully record information on the Social Protection Delivery Systems alongside medical condition and history, impairments of body the ICF principles.8 Therefore, the framework of function and structure, performance of activities analysis is anchored in the delivery chain’s core of daily living and instrumentational activities implementation phases, which include outreach, of daily living,7 documentation of significant life intake and registration, disability assessment, areas such as education, work, and community life, disability determination, individual plans of extensive documentation of socio-demographic intervention (determination of benefits and service and environmental audits of home, neighborhood, packages), and person with disabilities’ access and community, as well as other dimensions. to the benefit-service package associated with Instrumentation includes either standardized the disability certificate in Romania, as well as international tools or ICF-based tools that have been beneficiary operations management, including thoroughly tested and have good psychometric their compliance, data updates, and grievances. properties. Romania is currently transitioning Compliance with ICF is analyzed at every stage. Core implementation phases of disability assessment in Romania Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE Source: Adapted to the Romanian context after Lindert et al. (eds.), World Bank (2020: 11). 7 Activities of daily living (ADLs) are basic self-care tasks. The six basic ADLs are eating, bathing, dressing, toileting, mobility, and grooming. Instrumentational activities of daily living (IADLs) include managing finances, handling transportation, shopping, preparing meals, using the telephone or other communication devices, managing medications, doing laundry, doing housework, and undertaking basic home maintenance. Together, these skills represent what a person needs to successfully live independently. 8 Lindert et al. (eds.) (2020). 10 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM In tracing the delivery chain of Romania’s disability (SECPAH) and children (SECC) with disabilities. assessment system, the chapters of this report are Another two surveys collected factual data devoted to individual phases of the delivery chain, and opinions from members of CEPAH, its as shown above. However, within each chapter, the secretariat, and members of the Commission for more detailed levels and aspects of implementation Child Protection (CPC), which assesses children are described and analyzed, including the linkages with disabilities. SECC and CPC opinions were with other stages, and the enabling factors (such related to persons with disabilities’ transition as information systems, communications, and from childhood to adulthood, respectively, for technology). Also, the opinions and beliefs of youth aged 16–17.10 the various stakeholders are presented, in order • Legal survey and interviews. Regarding appeals to understand changes that should be made to and grievances, seven interviews with judges facilitate the paradigm shift from a medical to a and lawyers were conducted. In addition, the holistic approach. factual data were collected from an institutional This report presents an evidence-based analysis survey. Structured interviews were carried out supported by comprehensive data collection. It with judges and lawyers from administrative brings together findings based on data collection and fiscal litigation divisions in tribunals, who between October 2020 and April 2021.9 The data were involved in appeals against the disability collection was structured according to the core certificate between 2017 and 2020. phases of the delivery chain presented above. • Focus groups analysis. Regional focus The research combined quantitative and groups with SECPAH, SECC, and CEPAH qualitative techniques and included institutional representatives were organized to understand surveys, opinion surveys, interviews, and group the extent to which the ICF’s view is integrated discussions. Over 740 specialists took part in data into SECPAH work procedures and assessment collection activities; 570 responded to the surveys, instruments, as well as to what extent the and around 170 were involved in interviews and professionals in this field understand and focus groups. The following surveys and interviews promote a paradigm shift regarding disability were conducted to inform the study: assessment. • The SPAS survey. This survey collected data and • Interviews with nongovernmental opinions from practitioners within communities organizations (NGOs). A total of 20 in-depth about three core phases of obtaining a disability interviews were carried out with NGOs that certificate, namely outreach, intake and represent persons with disabilities in Romania registration (the beginning of the process), as and are actively and directly involved in that well as case management and persons with population’s protection, representation, and disabilities’ access to benefits and services (the inclusion in the community. end of the process). • Interviews of people with disabilities. Semi- • SECPAH and CEPAH surveys. At the county structured interviews were conducted with 61 level, two surveys collected factual data and people with disabilities. opinions from specialists who work on the comprehensive evaluation services for adults 9 The entire methodological package, including the research tools and description of the data collection process, is presented in a separate document, Output #1: Volume 2. 10 The 16–17 age group includes young people up to 18 years old. Executive summary I 11 Challenges of disability assessment and determination rarely see the applicants. The duration of the A. Key challenges of alignment to the commissions’ decision-making process per case is ICF approximately 5 minutes, which does not allow for proper deliberation or comprehensive, evidence- The process and instrumentation of the SECPAH based decision making.12 Under these conditions, complex disability assessment do not align with CEPAH decisions are the same as SECPAH the ICF principles. According to the ICF approach, recommendations for over 90 percent of cases. physicians should evaluate an applicant’s Therefore, the process can be considered redundant. impairments at the level of body functions and In addition, in Romania, unlike other countries, structures according to items related to ICF over 90 percent of applicants are classified into categories. Ideally, a group of qualified practitioners a disability degree. It is generally sufficient to should work together to establish and adopt the have a relevant medical condition and submit an ICF principles. This is not the case in Romania, application to get certified however. Nearly 75 percent of counties report that The country has no unified approach to the recommendations from the comprehensive determining disability. Significant differences assessment report are predominantly based on the are found across counties regarding disability medical criteria. Similarly, more than three-quarters assessment and determination processes. In of respondents gave priority to the medical criteria only very few counties, SECPAH, and especially in the formal classification or non-classification into CEPAH, benefit from specific, well-designed work a degree of disability. procedures. In most counties, work procedures are The disability assessment for adults in severely underdeveloped in terms of how to treat Romania is predominantly medical. In particular: discrepancies between the assessments done by • The medico-psychosocial criteria purports specialists outside the SECPAH versus the SECPAH to assess selected domains of activities and practitioners, how to identify and correct cases participation from the ICF, but this information suspected of fraud, how to develop training and working methods for multidisciplinary teams, how is not quantifiable and is insufficiently used in to ensure effective transition from childhood to determining the disability degree. adulthood, and how to draft individualized plans • The social inquiry is supposed to collect some for intervention, the Individual Rehabilitation information about the applicant’s functioning/ and Social Integration Program (PIRIS) and the autonomy degree and environment. Still, this Individual Service Plan (PIS). information is not systematically collected, nor The decisional process within SECPAH is there a clear procedure on how to use this and CEPAH lacks transparency. The absence information in the evaluation process, i.e., in the of procedures or guiding rules is accompanied six mandatory assessment areas.11 by a lack of records about how or why decisions • Valid psychological instruments are sometimes are made, without providing applicants with used, but information about vocation, education, a clear explanation for why a disability degree and social integration is sporadically and was conferred (or not conferred). From the ICF inconsistently collected. perspective, most of the tools used in Romania for both assessing and determining disability, and for • None of the functioning information that is assessing service needs, are still too focused on collected has any meaningful impact on the final medical aspects, are insufficiently participatory, and assessment. based on models that need to be revised to include The decision of the CEPAH commission is the person’s resources, the way he/she wants to not different from the SECPAH comprehensive live, and environmental factors, in addition to evaluation. The determination is solely based needs identified by the assessment. on the document review, and the commissions 11 GD no. 268/2007, Art. 48. 12 The average time of about 6 minutes per case is the average amount of time taken to resolve a case reported by CEPAH presidents in the Q3A questionnaires (see chapter 5). An estimate of the research team obtained from dividing the available time per month of CEPAH members by the number of cases dealt with per month indicates an even lower average time per case, below 5 minutes (see section 9.3.1). 12 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM B. Key challenges of institutions and ICF competence and training are lacking. SPAS, SECPAH, and CEPAH all have minimal staff human capital training, and ICF-related training is particularly limited. At the SPAS level, out of the 478 employees Generally, there is insufficient professional staff of the surveyed SPAS, only 5 persons have ever in SPAS and SECPAH, while the size of CEPAH attended a training related to the ICF. Among does not correspond to the size of the population CEPAH, out of 120 members, only 8 (from 8 of persons with disabilities officially registered counties) have ever participated in ICF training. in the county. The main problem related to human Similarly, out of the 346 specialists of the surveyed resources is the need for additional personnel. SECPAH, only 12 (from 3 counties) participated in Only about a third of the local authorities have a ICF training in the last 12 months (in 2020). SPAS at the local level that is accredited according to the law. The highest deficit is in persons responsible for providing social services and case C. Challenges of information managers responsible for children and adults management with disabilities living in the family. Only a few SECPAH comply with requirements regarding staff A management information system for the specializations provisioned by law. Specialists such disability-related system is nonexistent, and as psycho-pedagogues, physiotherapists, education processes are not automated along the entire instructors, and rehabilitation therapists account delivery chain. Most activities connected with the for a very small proportion of the total SECPAH disability assessment and determination are paper- staff and are found only in a few counties. based.14 Software applications that automate key Regarding a paradigm shift from a medical to functions and processes have limited functionalities a holistic approach, the current combination of or are nonexistent. Therefore, most activities— technical expertise is not aligned with the ICF, such as cross-checks, validation and verification, either at the CEPAH and SECPAH level. Family administration of benefits, administration of doctors and general physicians predominate, while payments, and beneficiary data management— specialists with medical expertise in work capacity are manual. Counties have substantial differences or in physical and rehabilitation medicine (PRM) are regarding the kind of recorded data in the existing very rare.13 More such specialists would improve assessment software applications. In many counties, the use of the comprehensive assessment tools and rigorous data about the registration and initial improve recommendations for better services/ verification of the application files are recorded in benefits for persons with disabilities. paper registries, and are not available in electronic Staff who serve persons with disabilities format. Data about dropout and exits from the have a very high workload, which varies system are not available. The quality of data in considerably across specialization, county, and the existing databases is relatively poor. At the locality. The workload per SECPAH member SECPAH/CEPAH level, no IT/data management/ differs considerably according to the member’s data analysis specialist is provided, nor are there specialization, with specialized doctors registering data operators. As such, poor data management, the highest workload. While SECPAH staff poor data quality, and poor use of data are workload declined during the pandemic, it still predictable in the absence of these human resources remained relatively high. Generally, the workload and under very high workload conditions. is very high in CEPAH, especially since commission In Romania, the uptake and registration phase members have at least one full-time job in addition is much more burdensome than in many other to their responsibilities with CEPAH. Discrepancies countries. International experience shows that most between counties are significant and depend countries have implemented various measures to both on the number of persons with disabilities minimize the number of papers an applicant should in the county and on the size and composition of submit. In more advanced administrative systems, SECPAH/CEPAH. Similarly, the workload in this a person can register electronically for the disability field varies considerably across localities. assessment and medical documents are pooled 13 The legislation (Art. 49 of GD no. 268/2007) mentions “specialized doctor” without any other specific requirement or restriction. 14 To address the gap, the ANDPDCA is currently implementing an EU-funded project to develop the National Disability Management System. Executive summary I 13 from an e-health system, while a social inquiry (if do not provide wheelchair-adapted toilets. There are needed) is obtained through institutional protocols financial and geographical accessibility obstacles to with no involvement, cost, or effort required on obtaining medical documents. Further reasons for the part of the applicant. Romania should strive blockages during the intake phase relate to the lack for this by rethinking the administrative processes of support provided by authorities, age when the to simplify access while avoiding duplication and disease was officially ascertained, lack of adapted rent-seeking opportunities. communication, and lack of awareness about the Collected data are used for internal reporting existence of and ability to apply for a disability and less often to document public policies certificate-associated benefit-service package. relevant to persons with disabilities, especially for preparing local strategies and identifying E. Challenges of needs assessment social service needs. At the local level, some SPAS do not have data, but make policies regardless. and case management In contrast, others have solid data but do not use There is no transparent methodology for drafting, them to formulate policies that target people implementing, or monitoring the individualized with disabilities. Still, most SPAS report using a plans of intervention. In Romania, the persons participatory approach that involves representatives with disabilities’ needs assessment is not done with of persons with disabilities in the analysis of adequate evaluation tools or according to a specific collected data and to define policies. methodology. According to the regulations in force, At the county level, the monitoring and the PIRIS and PIS are the only instruments that evaluation (M&E) reports of both SECPAH and draw conclusions on the service needs of persons CEPAH are rarely publicly disseminated. Less with disabilities. Even though these instruments than half of SECPAH and less than a fifth of CEPAH are essential to ensure consistency between what use data to document relevant public policies a person needs, how he or she wants to live, and for persons with disabilities, and very few use a the type of support he or she receives, the legal participatory approach. framework does not include any methodology for filling in the instruments, or implementing and D. Challenges of outreach monitoring the actions provided for them. The PIRIS and PIS are only used in some counties; practices Lack of proper disability outreach programs regarding drafting them vary significantly across limits the resources available for people with counties, they are sometimes filled in superficially, disabilities. Many people with disabilities in and social workers and case managers do not use Romania do not have access to the same educational them as much as they should. and labor market opportunities as their peers The existing PIS and PIRIS are of poor quality, without disabilities. The outreach programs fail to and their content is not entered into the SECPAH/ facilitate the inclusion of persons with disabilities CEPAH database(s), while case management for into society, and do not provide them with more adults with disabilities is still in an early stage of options or offer proper assistance. For many development. From the ICF perspective, both PIRIS persons with disabilities, the stigma associated with and PIS are still overly focused on needs, especially the disability is critical to their participation. the medical ones. They are also insufficiently The existing outreach programs provide participatory and based on templates that need to incomplete information and are poorly adapted to be revised to include the person’s resources, the way the various types of disabilities and the vulnerable he/she wants to live, and environmental factors, in groups that face social risks. The information and addition to the needs identified through assessment. communication provided by DGASPC (SECPAH), Thus, PIRIS, as it exists now, is weakly linked to both online and offline, is only partially adapted the assessment conclusions and does not represent for the specific access barriers by type of disability. anything in terms of an intervention plan. Also, the Inclusive outreach is available only in some existing PIS is just lists of general recommendations counties, and mainly in the larger cities. A deaf that do not comply even with the basic standards of individual living in Romania who applies for a proper information, let alone orienting or referring disability certificate has a chance of being assisted persons with disabilities to the necessary services. by a sign language interpreter in just 1 in every 10 In addition, there is no M&E mechanism connected SPAS offices, and only in about half of the country’s to PIS and PIRIS. Consequently, data from PIRIS DGASPC offices. For people using a wheelchair, are not recorded or analyzed to identify the social physical access is also very limited, as most of these service needs of persons with disabilities at the offices lack a ramp, do not have special parking, or county level. 14 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM F. Challenges of transition from G. Challenges of appealing the childhood to adulthood disability certificate In Romania, the process of transitioning The process of appealing the disability certificate from childhood to adulthood for people with is flawed. There currently is legislation in force disabilities is poor in terms of information, to facilitate this process, so that a person with support, and counseling. When young people disabilities can challenge a disability certificate with disabilities turn 18 years old, they often find directly in court. However, the courts lack the themselves cut off from their current support and necessary knowledge and specialty support to services, and fall through the cracks of an inefficient make a decision based on objective criteria. On the adult care system. The lack of information on the contrary, court judgments regarding appeals against transition process, lack of understanding of changes disability certificates tend to be highly subjective. in the assessment system, and absence of general Also, the administrative litigation departments counseling make the process especially difficult for do not currently process appeals against the many families. disability certificate with urgency, as required by The transition is abrupt and disorientating law. Free public legal assistance is available, but for many young people with disabilities. The there is no awareness of it or how to get it—hence law defines the support that young persons with it is very rarely used. The process of appealing the disability are entitled to during the transition to adult disability certificate is characterized by a lack of life period, but such support is almost nonexistent homogeneous procedures regarding the treatment in practice, leaving youth with disabilities and their of evidence at the level of courts, concerning issues families struggling with their new reality. Reforms such as admissibility of the objection on grounds are needed to streamline the transition process of late filing, admissibility of testimonial evidence and develop appropriate services that support the or evidence by independent experts, differences in child and their family during the difficult transition whether the court session is declared non-public, period. availability of support services during the trial, short periods between the court hearings, and court substantiations. Overall, the judicial procedures are poorly adapted to a person with disabilities’ specific needs, as per UNCRPD (Art. 13). Also, DGASPCs lack a complaint and appeal redress mechanism as an alternative route for people who are not satisfied with the disability degree assigned to them. Key challenges and recommendations: An overview ICF-related challenges General challenges Disability assessment and determination • The process and instrumentation of the SECPAH • The decision of the CEPAH is not different from the comprehensive disability assessment do not align with SECPAH comprehensive evaluation. ICF principles. • There is no unified approach to determining disability • The final decision is predominantly taken by the medical across the country. specialist, while the medico-psychosocial criteria are not • The decisional process within SECPAH and CEPAH lacks aligned with the ICF concept of disability. transparency, as standard procedures are missing. • The Deficiency/Disability ratings in the medico- psychosocial criteria are not supported by sound scientific methodology, either evidence or a stronger form of methodological consensus. Institutions and human capital • ICF training is minimal. • Generally, there is insufficient professional staff in • In terms of a paradigm shift (from a medical to a holistic SPAS and SECPAH, while the size of CEPAH does not approach), the current combination of technical correspond to the size of the population of persons with expertise is not aligned with the ICF, at the level of both disability registered in the county. CEPAH and SECPAH. • The workload of staff who serve people with disabilities is very high, and varies considerably across counties and by specialization. • Staff training is minimal at all levels: SPAS, SECPAH, and CEPAH. Executive summary I 15 ICF-related challenges General challenges Information management and outreach • Data management is highly fragmented between • Automation of processes is minimal along the entire and within counties (among SECPAH, CEPAH, and delivery chain. its secretariat), impeding proper comprehensive • Most activities connected with disability assessment are assessment. paper-based. • The provided information is incomplete and poorly • The quality of data in the existing databases is relatively adapted to the various types of disabilities and for the poor. vulnerable groups facing social risks. • Collected data are used for internal reporting and • Lack of proper disability outreach programs limits the less often to document the public policies relevant to resources available for people with disabilities. persons with disabilities. • Financial and geographical accessibility obstacles are reported concerning obtaining medical documents. • Improvements are needed to reduce barriers for vulnerable groups. The existing interface between people and institutions is a weak link of the disability system. Needs assessment and case management • Case management for adults with disabilities is in an • There is no specific methodology or adequate early stage of development, especially for persons with evaluation tools for persons with disabilities’ needs disabilities living with the family. assessment. • There is no clear methodology or uniform procedure for filling in, implementing, and monitoring the PIS and PIRIS, as well as the actions provided for therein. Transition of young with disabilities to adult life • Disability in children is not assessed based on similar • Transition to adulthood results, in some cases, in principles as adults, leading to differences in the changes to the degree of disability, and even the denial assessments. of a new certificate. So, a young person suddenly faces a situation in which his/her adaptive and self- determination resources are insufficiently developed (for example, if the change in disability degree leads to the loss of the right to a personal assistant). • There is a lack of information on the transition process. • The absence of counseling makes the transition process especially difficult for many families. • The transition is abrupt and disorientating for many young people with disabilities. • The law defines support during the transition period, but it is almost nonexistent in practice. Appealing the disability certificate • The disability determination contestation process is • The process of appealing the disability certificate is resolved with a high level of subjectivity. flawed. • Judges and lawyers lack ICF training, and ICF is not • Detailed information on how to make an appeal, considered. accessible to all persons with disabilities, in accordance with the UNCRPD (Art. 9), is not available in all counties. • The disability certificate appeal mechanism does not include a continuous learning dimension and does not follow the transparency principle. • Courts lack the knowledge and access to expert opinion to provide a result based on objective criteria. 16 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Key policy recommendations Romania’s disability assessment, determination, Pillar B. Improve access to services and needs assessment processes can be modified tailored to persons with disabilities’ to be more effectively aligned with the ICF specific needs principles. The reform process should include three key pillars, introduced consecutively: • Make disability outreach a priority. • Improve needs assessment and develop case Pillar A. Improve disability assessment management for adults with disabilities. and determination by introducing the Rethinking the role of case management in the ICF framework service needs assessment and rehabilitation process is an important priority in Romania. • Introduce ICF-based instruments. The new instrumentation should include a proper • Make the transition process from childhood to psychometric tool that is quick to use, efficient, adulthood gradual, and improve counseling. and fully aligned with the ICF. The process of transitioning from childhood to adulthood should be streamlined, and clearly • Design clear procedures that respect ICF articulated in new laws and procedures. principles, which should streamline the process, improve administrative efficiency, and comply • Facilitate persons with disabilities’ access to with the principles of the UN Convention on the address the courts directly, and develop a Rights of Persons with Disabilities (UNCRPD). complaint and appeal redress mechanism • Invest in skills development on ICF at all Pillar C. Integrate all disability-related levels, SPAS, SECPAH and CEPAH, including judges, lawyers, and other relevant personnel. systems. • Enhance interaction with applicants and The integration of all disability-related systems in improve data management. Digitizing and Romania is outside of the scope of this report and enhancing the interoperability of the databases these advisory services. Nonetheless, the current will increase transparency at all levels of the marked fragmentation of Romania’s disability disability determination process, streamline and system represents a factor that must be considered improve workflows, and significantly improve when designing the new set of instruments and the system’s performance. procedures to change the paradigm in the field of disability. Phase 1: Outreach I 17 Pillar A. Improve disability assessment and determination by introducing the ICF framework Introduce ICF-based instruments: both in instrumentation and procedures—is Integrate functioning into disability fundamentally a matter of human rights and should be a key focus for policy reforms. assessment The procedures should be created separately Modernizing Romania’s disability assessment in SPAS, SECPAH, and CEPAH. Procedures system requires integrating information into should include key aspects of the disability the assessment process in a meaningful and assessment, including coordination between scientifically sound way. The first and essential agencies, procedures dealing with discrepancies reform needed is to collect functioning information and fraud, procedures on how the multidisciplinary in a consistent manner that is standardized across teams should work and make decisions in the ICF all counties and is scientifically sound. Second, this framework, procedures that effectively insure information must have a genuine, transparent, and transition from childhood to adulthood, and measurable impact on the final disability assessment individualized plans for intervention—the PIS and in all cases and for all counties, in the same manner. PIRIS. The interaction with the applicant while Instead of six areas of “comprehensive conducting the social inquiry should be based on assessment,” the system should consistently well-established guidance and procedures. collect functioning information using a single, The role and responsibilities of CEPAH, in standardized, psychometrically sound instrument. relation to SECPAH, should be clarified and The current six-part, comprehensive assessment standardized across counties. We suggest a of disability should be replaced by a medical general review of the roles and responsibilities of assessment augmented by a functioning-based CEPAH and SECPAH in the context of disability assessment score from a psychometrically sound assessment, keeping in mind that it is ideal to instrument, one that is fully aligned with the ICF have a single institutional location for disability model of functioning and disability; this should be assessment that should be, to every extent possible, standardly and consistently used in every county. standardized in instrumentation and procedure This instrument must be scientifically appropriate across all counties in Romania. In this review, the for creating a summary or “whole person” disability focus should be on the potential added value of score, preferably on an integral scale. This change the CEPAH commission and avoid duplication or in instrumentation will require changes in the redundancy with SECPAH. Improving the working responsibilities and procedures used by both the procedures and instruments will enhance the SECPAH and CEPAH. system’s performance. The current medico-psychosocial criteria should be revised by updating and modifying Invest in skills development medical information to allow for joint evaluation It is crucial to invest in skills enhancement and of multiple health conditions and multimorbidity, develop ICF training courses for relevant staff as well as alignment with the International to explain and adopt the correct use of the ICF Classification of Diseases (ICD)-11. as a classification, as well as to show its impact and usefulness on daily practice, particularly Design and develop clear procedures that in multidisciplinary teams. When a jurisdiction respect ICF principles moves from the medical approach to a holistic, New procedures urgently need to be redesigned multidimensional, ICF functioning approach, there and implemented based on the ICF principles. is also a change in requirements for the qualification The new procedures should be developed in a and expertise of assessors. Training on ICF should collaborative process featuring practitioners, social be carried out for all staff, and opportunities to workers, international ICF experts, policy makers, exchange experience and teambuilding should and disability advocates. This will provide a unique be multiplied. Staff training should be extended opportunity to redesign and introduce a modern to all SPAS, SECPAH, and CEPAH. Judges and functional approach to more efficiently determine other relevant personnel should also know the ICF disability. Ensuring cross-county consistency— practices and methodologies. For some groups of 18 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM specialists (e.g., occupational therapists), training Enhance interaction with applicants and on the ICF should be aligned with the curricular improve data management content of their licensure. Alignment with the ICF implies that the Digitizing and improving the interoperability assessment process, while benefiting from medical of the databases will increase transparency at all expertise, should not be solely determined by levels of the disability determination process, as medical expertise alone. All assessors, or members well as streamline workflows and significantly of assessment teams or committees, should be fully improve the system’s performance. The ICF aware of and trained in the ICF understanding of provides the appropriate platform to electronically functioning and the need to address disability as collect and store health and functioning a global, summary experience, shaped by both information in a manner that guarantees semantic health and environmental determinants. Physical interoperability across other existing platforms. and rehabilitation medicine professionals have Extensive work should be done to ensure that all both the conceptual and clinical expertise to assess commonly used health and rehabilitation data functioning based on appropriate and sufficient collection tools correspond to ICF classifications, documentation and evidence. Other rehabilitation so that new ICF-based data are compatible with professionals—physiotherapists, occupational previously collected clinical data and other legacy therapists, educational and vocational therapists— databases. are equally well-versed in the ICF notion of A management information system for the functioning and disability, whether or not they disability-related system should be developed. have the clinical experience and expertise to assess It is vital to connect several database registries disability as a summary measure, rather than in and make data available. Data validation software terms of specific functioning domains, such as should be developed. Software applications mobility, independent living, or employment. that automate key functions and processes— The reform should be accompanied by such as cross-checks, validation and verification, improvements at the staff level. Additional administration of benefits, administration of personnel should be ensured, including enough payments, and beneficiary data management— specialized doctors, especially in physical should be improved or created. Clear guidance medicine and rehabilitation, as far as possible. should be given to counties on what data must be Raising awareness and training of SECPAH and collected, and software for data capturing should be CEPAH practitioners could be a game-changer. developed. The specialists’ workload should be reduced and balanced. Pillar B. Improve access to services tailored to specific needs People with disabilities face widespread barriers ways and considering the adaptations necessary for in accessing health and related services. The vulnerable groups. While more analysis is needed in origin of these barriers lies in a lack of policies this area, some key measures could be summarized and strategies, service provision and delivery, as follows: and awareness and knowledge about disability • Further research is needed to design specific programs and services. Improving key services and strategies, including comprehensive outreach, ensuring access to effective promotion, prevention, to improve services and access. Some countries planning, treatment, rehabilitation, and palliative have introduced a standardized form, such as health services are important areas of improvement. a “green form” that must be completed by any specialized physician once he/she establishes a Make disability outreach a priority medical diagnosis connected with the disability criteria. It may be accompanied by a brochure Romania should clearly articulate the main themes with the core information that the medical unit for the information and communication programs must deliver to those persons receiving a green to be created for people with disabilities. Equal form. representation and better coverage for people with disabilities can be enhanced by reaching out to • It is crucial to evaluate the effectiveness of specific population groups in culturally sensitive existing efforts systematically. A comprehensive Phase 1: Outreach I 19 assessment of outreach programs and practices in remote and rural areas. ANDPDCA should also should be undertaken to gauge future training explore the possibility of introducing new support and development needs, as well as to share best measures, such as grant programs for adapting practices in this area. a house or car to meet the individual needs of a • The persistent core message of ”handicap” person with disabilities. Developing an integrative needs to be changed to ”disability” to platform with information about lifelong benefits support reforms. This involves changes to and services available to persons with disabilities, both legislation and public policy documents. coordinated by the ANDPDCA, could add However, sustained information, education, and considerable value in this respect. communication campaigns are equally needed Developing ICF-based rehabilitation services, to change the perception of current beneficiaries, both medical and vocational, represents a top as well as the general perception of disability as priority for reforming the disability system and a “handicap,” and of the disability certificate as making effective individualized plans (PIS, compensation for medical conditions. PIRIS). Improving the access of people with • Joint programs at SPAS, CEPAH, and SECPAH disabilities to existing services is equally important. on further development and outreach should be More efforts should be made at the county level encouraged. A technical expert panel comprised to develop partnerships, communication, and of interagency representatives should be formed collaboration between the General Directorate for to develop and pilot outreach guidelines. Social Assistance and Child Protection (DGASPC)/ It is essential for people with disabilities to SECPAH and the other service providers (public participate in the development of such programs and private) to create a functional network instead and strategies. of the existing clusters of isolated services. Improve needs assessment and develop Make the transition process from case management for adults with childhood to adulthood gradual disabilities The process of transitioning from childhood to adulthood should be improved. Procedures should Improving case management is an important be introduced that benefit youth and their families reform that should be undertaken to ensure that involved in the transition process. New guidance it is an integral part of the disability assessment and procedures should be adopted to improve and determination system. Case managers engage collaboration between agencies. The SECPAH and with persons with disabilities and assess, plan, SECC, as well as CEPAH and CPC, should hold implement, coordinate, monitor, and evaluate regular consultative meetings and share all the options and appropriate services to satisfy their assessment documents to facilitate the transition needs. Case managers must focus not only on process. Joint meetings should be held between a person’s impairment of function or activity youth with disabilities and their families and the limitation, but also on the barriers and challenges representatives of SECPAH/CEPAH. created by the external environment. Thus, Increase the formal transition period from case managers use the ICF framework, which childhood to adulthood, tentatively from 16 to 20 is integrated and multidisciplinary, to develop years old. For young people enrolled in education, person-centered intervention plans. the period should be further extended until they The individualized plans, PIS and PIRIS, receive their degree or turn 26 years old. Maintain should be made compulsory and improved. The the degree of disability as long as the child is in instruments must be standardized and harmonized school, so they continue to receive the same benefits. to ensure a rigorous assessment of the needs of From age 16, in addition to regular evaluations, the person with disabilitiess, based on a specific the young person and their family should benefit methodology, which is to be aligned with the from counseling in order to understand the effects UNCRPD and ICF. A mechanism to monitor PIRIS/ of the transition from childhood to adulthood, in PIS implementation should be put in place and relation to a possible reduction in benefits and frequently evaluated. services. In addition to information and counseling, The service package connected to disability efforts should be increased to provide adult life assessment should be extended. The services training programs carried out in cooperation or should become available countrywide, including partnership with legal entities, public and private. 20 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM These programs should focus on increasing the case studies, or more detailed information about participation of young people with disabilities in how certain cases are dealt with could be published, both education and the labor market. The transition which is important for proving the mechanism’s to adult life should be coupled with a program to legitimacy and improving confidence about its assess the development of independent living skills. efficiency. Such a program should be applied consistently It would also be useful to develop a across the country for all young people with standardized template to substantiate the decision disabilities, especially those who live with family. regarding classification/non-classification or In addition, programs to facilitate the transition degree of disability. This should be completed of young people with disabilities to independent by SECPAH or CEPAH in a format that can be living should be developed. used by the courts. To reduce subjectivity in court Support measures for young people with judgments regarding appeals to the disability disabilities do not ensure a coherent and smooth certificates, support in terms of information or transition to adult life. Most measures are available specialty support regarding disabilities and medico- only in a few counties and for a small number of psychosocial criteria should be made available to youth. The development of support measures is seen the courts. Additionally, training on these topics as key, but at the same time, is not possible under should be provided both to judges and lawyers. current conditions and resources available to both ANDPDCA could also identify and train experts evaluation services and commissions for children who can provide assistance to the courts. and adults. Policy makers, disability evaluation It is recommended to develop, at the DGASPC structures, and NGOs need to work together to level, an actual complaint and appeal redress identify the main difficulties of the transition to mechanism that respects the principles of adult life for young people with disabilities and to accessibility, equity, predictability, transparency, advocate for solutions and the subsequent adoption and continuous learning, which could be a way of new legislation. to support those who disagree with the assigned disability degree and reduce the number of appeals Facilitate persons with disabilities’ filed in court. This new redress mechanism should access to address the courts directly, and not be a return to the pre-2017 situation, with a develop a complaint and appeal redress sole commission at the national level working with mechanism insufficient resources; rather, it should be based on a network of county and regional institutional It would be useful to develop, at the national level, structures. Furthermore, the new mechanism should a guide (potentially titled “How to challenge the not prevent citizens from pursuing their rights and certificate of disability”) to be made available to interests using any other route (administrative law all DGASPCs in the country and distributed to all proceedings or other official litigation mechanisms), people with disabilities along with the certificate. at the national or local level, neither are they meant The CEPAH secretariats should continue to receive to replace the judicial system or any other form of and register appeals to the certificates, even under legal action. the terms of the new legal framework. In addition, they should collect data based on which statistics, Pillar C. Integrate all disability-related systems Romania’s disability system is characterized for people who must navigate each program by marked fragmentation. Parallel systems of separately, provide the same information and invalidity pensions and disability, as well as the documentation over and over, and wait in long separate disability system for children and adults, lines at different offices. This is also inefficient exist separately with minimal integration. Many for administrators, resulting in duplications or other program-specific delivery systems for gaps in coverage, overlapping processes, wasted most of the benefit-service package are attached resources, and an inability to keep track of how to the disability certificate, further deepening social protection money is spent. The integration of the fragmentation. This is costly and inefficient all disability-related systems in Romania is out of Phase 1: Outreach I 21 the scope of this report and these advisory services. a meaningful and scientifically sound integration Nonetheless, it remains an important area of reform of functioning information into the assessment that must be considered when designing the new process. The first and most essential reform is set of instruments and procedures to change the therefore to introduce new instruments and paradigm in the field of disability. procedures. Aligning the disability assessment’s Moving forward, Romania needs to stay the procedures, instrumentation, and criteria to the ICF course on disability reform implementation and UNCRPD has implications for human capital aimed at introducing ICF principles, improving requirements. ICF training should be introduced at access and quality of services to persons with all levels. Once this part of reform is introduced, the disabilities, and fostering the system’s integration. quality and access to services should be improved The first step of this comprehensive reform and integration of the disability systems should be should focus on ICF introduction. Modernizing considered. Romania’s disability assessment system requires 22 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Introduction The International Classification of Functioning, standards. The country has attempted to do so over Disability and Health (ICF) provides a globally the past decade, though largely without success. recognized framework for classifying and Currently, in Romania, the National Authority measuring disability. ICF recognizes disability as a for the Rights of Persons with Disabilities, multidimensional and universal phenomenon. Use Children and Adoption (ANDPDCA) has initiated of the ICF leads to more integrated approaches to an extensive reform of the system, focused gathering and sharing information and to policy on the application of the ICF framework in making. Such an approach could be developed disability assessment for adults, in addition to and implemented following the International the existing one for children. Through the current Classification of Functioning, Disability and Health Reimbursable Advisory Services (RAS) Agreement (ICF) and aligned with UN Convention on the on Modernizing the Disability Assessment System Rights of Persons with Disabilities (UNCRPD). in Romania the World Bank provides assistance to ”The assessment should be based on a human rights the ANDPDCA in order to improve the legislation approach to disability, focus on the requirements of governing the country’s disability assessment the person because of barriers within society rather system for adult persons. than the impairment, take into account, and follow The project aims to provide the necessary a person’s will and preferences, and ensure the support to: (i) systematize legislation in the field full involvement of persons with disabilities in the of disability assessment in Romania by revising decision-making process.”15 it according to modern approaches for evaluating There is broad recognition among experts that disabilities (those that follow the ICF framework); Romania should reform its disability assessment and (ii) foster a change in the paradigm (going and determination process and align it with the ICF from an impairment to a disability approach)16 by 15 UNCRPD Committee, General Comment Art. 19. 16 Bickenbach et al. (2015). Phase 1: Outreach I 23 building the capacity of public servants involved in requested by people with disabilities. The results the disability assessment process at all levels. This of these analyses allow for the identification and RAS involves five sets of activities that will result understanding of changes needed to modernize the in seven analytical outputs, as well as ongoing system, as well as possible barriers that may delay technical assistance and capacity building. The or block the reform process. seven outputs include: In practice, Output #1 collects evidence to set the stage for all subsequent activities of the RAS, 1. Diagnosis report on the current disability and constitutes the preliminary phase of a process assessment mechanism for developing a disability assessment mechanism 2. Proposed set of medico-psycho-social criteria for based on the ICF, enabling the specific identification disability assessment of people with disabilities’ needs. 3. Proposed working instruments for a modernized Output #1 is organized in two volumes. This disability assessment report represents Volume 1, which focuses on 4. Report on the recommendation of a data analysis, main findings, conclusions, and comprehensive assessment procedure of people recommendations. Volume 2 is a technical document with disabilities that details the methodological package developed 5. Mid-pilot report on recommendations on for the background research that provides evidence disability determination and needs assessment17 to support this report. 6. Technical recommendations to facilitate specific The report opens with a description of the expertise in disability assessment for court cases general context of disability assessment in Romania (Chapter 1). It continues with an overview that 7. Final report on recommendations on disability presents the core phases of the delivery chain and determination and needs assessment statistics regarding Romania’s national disability The present Output #1 represents the first result assessment system. The next five chapters (2–6) of the project and corresponds to component 1 of the detail each core phase of the delivery chain starting RAS. The objective of this component is to take stock with outreach, intake and registration, the disability of the existing disability assessment mechanism and assessment and determination, as well as the processes in Romania with regard to: (i) instruments individual intervention plans used to assess benefits for disability assessment and determination, (ii) the and services needed. Next, Chapter 7 examines administrative processes of disability assessment, the grievance and redress mechanism. Chapters 8 and (iii) the way in which disability assessment is and 9 look at the key institutional aspects affecting linked to the social protection system for people the effectiveness of the disability assessment with disabilities. Specifically, the analysis provides and determination process in Romania. Chapter an in-depth understanding of how Romania’s 8 focuses on the transition from childhood to system for assessing disability currently works adulthood for people with disabilities, and Chapter in Romania and its role in referring persons with 9 examines human resources, data management disabilities to services and benefits that can meet and information systems, procedures, logistics, and their needs. other issues for each of the main organizational To achieve these objectives, this diagnosis actors involved. The final chapter draws the main report includes, inter alia: (i) an analysis of current conclusions of the analysis, focusing on the main institutions, the disability assessment instruments challenges and constraints to adopting a holistic and processes currently under implementation, the approach to disability assessment, and lists the profile and capacity of human resources involved in recommendations for the next steps of the project. the process (skills, disciplines and their sufficiency The primary audience for this report is given existing needs), and (ii) relevant evidence ANDPDCA specialists who work with both on international best practices regarding disability adults and children with disabilities, as well as the assessment and determination, and their role hundreds of practitioners involved in disability in identifying the needs of services and benefits assessment across Romania. 17 The agreement includes an interim report after 6 months of piloting the new methodologies, tools, and procedures and a final report after 12 months of piloting. 24 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Data and method18 This report presents an evidence-based analysis on the Foundations of the Social Protection Delivery that is grounded in comprehensive data collection. Systems.19 It is therefore structured considering the The entire methodological package, including the core phases of the process for obtaining a disability research tools and description of the data collection certificate in Romania, namely (1) outreach, (2) process, is presented in a separate document intake and registration, (3) disability assessment, (Volume 2). This section briefly describes the main (4) disability determination, (5) individual plans elements of the research methodology developed for intervention (or determination of the benefits- for this report. Data collection was carried out in service package) and (6) appeals and complaints close cooperation with the World Bank and the against the disability certificate. As such, the ANDPDCA teams in January–March 2021. research covered all key actors - people and The research is structured according to the institutions, governmental and nongovernmental analytical framework for social protection delivery - participating in the disability assessment and systems as defined in the World Bank’s Sourcebook determination system across the country. Map 1: Geographical coverage of the background research (number of participants by county) BT 23 MM 15 SV SM 17 17 BN IS SJ 26 12 BH 31 NT 19 CJ 24 31 MS HR VS 18 3 BC AR 12 AB 22 6 11 SB BV CV VN GL TM HD 9 2 29 18 34 3 28 BZ CS VL AG PH 6 BR 0 GJ 15 14 TL DB 7 6 15 12 10 MH IF 4 IL 19 17 OT 101 B DJ 14 CL 12 CT TR GR 7 17 12 15 Source: Autors. Note: At the national level, 741 persons participated to this background research. 18 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 19 Lindert et al. (eds.) (2020). Phase 1: Outreach I 25 Infographic 1: Background research at a glance INDIVIDUAL INTAKE DISABILITY DISABILITY PLANS FOR APPEALS AND INSTITUTIONAL OUTREACH AND ASSESSMENT DETERMINATION SOCIAL GRIEVANCES ASPECTS REGISTRATION REINTEGRATION KEY ACTORS 1 2 3 4 5 6 7 NUMBERS Q1 Q1 Q1 Q1 Q1=71 SPAS Interviews Interviews Interviews Interviews Interviews=5 Q2A=51; SECPAH & Q2A, Q2B Q2A, Q2B Q2A, Q2B Q2A, Q2B Q2A, Q2B Focus groups Focus groups Focus groups Focus groups Focus groups Q2B=388 SECC Focus groups=5 Q3A=24; CEPAH & Q3A, Q3B Q3A, Q3B Q3A, Q3B Q3A, Q3B Q3A, Q3B Focus groups Focus groups Focus groups Focus groups Focus groups Q3B=65 CPC Focus groups=3 CEPAH Q3C=27; SECRETARIAT Q3C Q3C Q3D Q3C Q3D=26 Interviews COURTS with judges & Interviews=7 lawyers NGO Interviews Interviews Interviews Interviews Interviews Interviews Interviews Interviews=20 Peope with Journey=35 disabilities Journey Journey Journey Journey Journey Journey Journey Interaction Interaction Interaction Interaction Interaction Interaction Interaction Interaction =20 Grievances Grievances=6 Source: Authors. 26 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The research methodology combines quantitative (the person with disabilities); (ii) a profile of the and qualitative techniques and includes human resources involved in the assessment, institutional surveys, opinion surveys, interviews, their operation across multidisciplinary teams, the and group discussions. In total, 741 specialists took workload, job descriptions/roles, training needs of part in the data collection activities; 570 responded local and county level staff, etc.; (iii) a description to the surveys, and around 170 were involved of the information system, data analysis processes, in interviews and focus groups. An at-a-glance and proactive outreach to persons with disabilities; illustration of the research is shown in Infographic 1. (iv) the range of benefits and services recommended Based on desk research and analysis of the (as part of the individual plan of intervention) and current legislation, a set of research instruments available following the disability assessment and was developed. The instruments were extensively determination process; and (v) current institutional consulted with the ANDPDCA team and other arrangements for contesting the disability certificate practitioners from county and local institutions, and in court. pretested by the public services of social assistance (SPAS) at the community level. All stakeholder At the community level: The SPAS feedback was incorporated into the final version. survey The research instruments foster analysis of the The SPAS survey collects data and opinions from current disability assessment and determination practitioners within communities about three core system by providing: (i) a description of the current phases of obtaining a disability certificate, namely institutional structure (including interinstitutional outreach, intake and registration (the beginning relations), business processes, the assessment of the process), as well as case management and process (including current instruments and persons with disabilities’ actual access to benefits equipment used for disability assessment and and services (the end of the process). determination), and their focus on the beneficiary Table 1: The SPAS survey All localities Selected Total in the in the Q1_SPAS response country sample completed rate Typology of communities at the national level: (number) (number) (number) (%) URBAN Cities with >20,000 inhabitants as of January 1, 2020 105 31 18 58 Small cities with up to 20,000 inhabitants as of January 1, 2020 214 31 10 32 RURAL Communes developed and close to the county seat 352 28 12 43 Other communes (typical rural localities) 2,226 35 15 43 Communes underdeveloped and remote 283 30 16 53 Total 3,180 155 71 46 Source: Authors. Notes: The rural localities were classified according to: (i) Human Local Development Index (LHDI2011) at the commune level and (ii) Geographical isolation (Teșliuc, Grigoraș and Stănculescu, coord., 2016).20 The developed communes are those at the top 33 percent of the national rural distribution of communes by LHDI, while the underdeveloped communes are those at the bottom 33 percent of the national rural distribution of communes by LHDI. The communes far from the county seat are those at the top 40 percent of the national distribution of communes by the number of kilometers to the county seat, while communes close to the county seat are found among the bottom 40 percent of the national distribution of communes by the number of kilometers to the county seat. 20 The LHDI2011 is strongly correlated with the housing modernization index; Pearson coefficient of 0.86, p =.000. At the same time, the LHDI is significantly negatively correlated with the relative poverty rate (AROP) estimated by the World Bank at the locality level based on the same data from the 2011 Census; Pearson coefficient of -0.74, p =.000. Phase 1: Outreach I 27 Q1_SPAS is a questionnaire for the public services with disabilities. SECC and CPC opinions were of social assistance (SPAS). In the first step, the related to persons with disabilities’ transition from research team developed a typology using all childhood to adulthood, respectively, for youth localities (administrative-territorial units) in the aged 16–17.23 country. The typology distinguishes between cities, Q2_SECPAH: At SECPAH/SECC level, the small cities (up to 20,000 inhabitants), communes background study employed two questionnaires, developed and close to the county seats (where corresponding to the institutional survey and the the institutions in charge of disability assessment opinion survey, respectively: (A) an institutional are located), communes underdeveloped and questionnaire on facts and indicators regarding the remote, and all the other rural localities. Based on services for comprehensive evaluation for adults this typology, DGASPC representatives were asked and children with disabilities; and (B) an opinion to randomly select (according to their knowledge questionnaire on practices and experiences for and working relationship) one locality of each type practitioners working in these services. These per county. A total sample of 155 administrative- questionnaires were sent to all 47 DGASPCs territorial units covering 31 counties21 was selected. in the country. The first (A) was completed by The questionnaires were distributed to the SPAS the SECPAH and SECC chiefs, either jointly or from the localities selected in the sample with separately. The second (B) was self-completed the support of the focal points designated for independently by practitioners working in these this research in each county DGASPC (at the services and sent directly to the research team to ANPD’s request). SPAS sent back the completed ensure confidentiality. questionnaires either directly to the research team or Q3_CEPAH: Similarly, at CEPAH/CPC level, through their county focal point. The total response two questionnaires were used: (A) an institutional rate was 46 percent, with a total of 71 completed questionnaire on facts and indicators regarding Q1_SPAS questionnaires from 26 counties.22 the activity of the evaluation commission for Along with the survey, five in-depth interviews adults and children with disabilities; and (B) an (one for each type of locality) were conducted with opinion questionnaire on practices and experiences SPAS representatives that have responsibilities in for the members of these commissions. These the field of disability. Interviews focused on their questionnaires were sent to all 41 counties and participation in the disability assessment system, as the 6 districts of Bucharest. The first (A) was well as the main constraints and concerns regarding completed by the CEPAH and CPC presidents, access to benefits and services for persons classified either jointly or separately. The second (B) was in a category and type of disability at the local level. completed independently by the members of these commissions and sent directly to the research team At the county level: Surveys on SECPAH, to ensure confidentiality. CEPAH, and CEPAH secretariat Q3_CEPAH secretariat (within DGASPC): (C) a questionnaire on the result indicators of At the county level, two surveys collected factual the disability determination process, and (D) a data and opinions from specialists who work on the questionnaire on appeals, complaints, and the comprehensive evaluation services for both adults redress mechanism concerning the disability (SECPAH) and children (SECC) with disabilities. certificate. These questionnaires were sent to all 41 Another two surveys collected factual data and counties and the 6 districts of Bucharest, and both opinions from members of the Commission for were completed by secretaries and presidents of the Assessing Adults with Disabilities (CEPAH), its evaluation commission for adults (CEPAH). secretariat, and members of the Commission for Child Protection (CPC), which assesses children 21 Requests to select localities to participate in the survey on SPAS were sent to all 41 counties. Out of these, 31 DGASPCs sent back the selection of localities. In Bucharest, the 6 DGASPCs also play the role of SPAS and were not included in this survey. 22 The number of Q1_SPAS completed per county varies between one and five (maximum). 23 The age of 16–17 years old refers to teenagers up to 18 years old. 28 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Table 2: Institutional surveys regarding disability assessment and determination - overview of types and response rates Disability assessment Disability determination Appeals Q3C_CEPAH Q3D_CEPAH Institution/ Total Q2A_SECPAH Q3A_CEPAH secretariat/ secretariat/ Completed by: number DGASPC DGASPC of SECPAH SECPAH and CEPAH CEPAH counties SECC alone alone SECC jointly CEPAH secretariat secretariat Yes No No No No No 15 No Yes No No No No 5 No Yes No Yes No No 3 No Yes No Yes Yes No 1 No Yes No Yes Yes Yes 6 No Yes No No Yes No 1 No Yes No No Yes Yes 3 No No Yes No No No 6 No No Yes Yes No Yes 1 No No Yes Yes Yes Yes 8 No No Yes No Yes Yes 2 No No No Yes Yes Yes 5 No No No No Yes No 1 No No No No No Yes 1 No No No No No No 5 15 19 17 24 27 26 Source: Authors. All questionnaires were sent in parallel through questionnaire was completed for 5 counties.25 the focal points designated for this research in each In Romania, the comprehensive disability county DGASPC. However, Table 2 shows that assessment includes six mandatory areas in which only some of the various institutional structures the evaluation must be carried out by experts with cooperated or communicated in some counties, different specializations, as per GD no. 268/2007, while in others they function as independent Art. 48.26 However, there is no instrument or players, rather than integrated parts of a sole methodology for these six mandatory areas to be delivery chain. Overall, 63 questionnaires of all uniformly applied at the national level. Instead, types were collected. Nonetheless, full information current regulations leave it up to each assessment on disability assessment, determination, and service (SECPAH) and determination commission appeals cover 14 counties,24 while for 22 counties (CEPAH) to develop its working instruments and 6 districts of Bucharest the data are partial (only and detailed procedures (Annex to Order no. about the assessment, the determination, appeals, 2298/2012). The institutional questionnaires asked or a combination of two of those). No institutional SECPAH/CEPAH to provide their procedures and 24 These counties are Arad, Argeș, Bihor, Bistrița-Năsăud, Brăila, Dolj, Galați, Hunedoara, Mehedinți, Neamț, Olt, Sălaj, Sibiu, and Suceava. 25 The counties without data are Caraș-Severin, Covasna, Ilfov, Prahova, and Vrancea. 26 “The mandatory areas of assessment are (i) social assessment provided by social workers; (ii) medical assessment provided by medical specialists; (iii) psychological evaluation provided by psychologists; (iv) vocational assessment of professional abilities provided by psycho-pedagogues, educational instructors, or rehabilitation pedagogues; (v) assessment of the level of education provided by psycho-pedagogues, educational instructors, or rehabilitation pedagogues; and (vi) assessment of the skills and level of social integration provided by psychologists, psycho-pedagogues, educational instructors, recovery teachers or social workers” (GD no. 268/2007, Art. 48). Phase 1: Outreach I 29 instruments used to evaluate the six mandatory ages 23 to 72, graduates of different specializations areas as attached documents to questionnaire Q2A/ (doctors, social workers, sociologists, psychologists, Q3A, so the research team could identify their psycho-pedagogues, legal experts, economists, strengths and weaknesses, along with items that etc.), holding a management position or not, newly could possibly be adapted for national use. hired in SECPAH/designated in CEPAH or with In addition, there are two main instruments for more than 25 years’ experience. identifying services for people with disabilities: the Courts: Regarding appeals and grievances, Individual Rehabilitation and Social Integration factual data were collected from the institutional Program (PIRIS) and the Individual Service Plan survey Q3D_CEPAH secretariat. In addition, seven (PIS).27 At the national level, there is no clear interviews with judges and lawyers were conducted. methodology for implementing and monitoring the Three structured interviews were carried out online proposed interventions in these key instruments with judges from administrative and fiscal litigation that are essential for ensuring consistency between divisions in tribunals, who were involved in appeals what a person needs, how he or she wants to live, cases against the disability certificate between 2017 and the type of support he or she receives. To address and 2020. The other four structured interviews were this gap, the institutional questionnaires include conducted with lawyers who worked on cases to dedicated sections on PIRIS and PIS. Additionally, challenge the disability certificate in administrative the packages28 of documents approved (after and fiscal litigation divisions of the tribunals and/ being rendered anonymous) for three individuals, or courts of appeal (in appeal proceedings) between namely the last individuals assessed by CEPAH 2017 and 2020. during the most recent meeting before filling in the questionnaire, were requested as attachments to At the regional level: Focus groups with Q3A. Only eight counties responded to this request, SECPAH and CEPAH but the sample of documents is used to analyze how they are filled in (especially PIS and PIRIS) and SECPAH: The World Bank team organized four how the proposed interventions are implemented regional focus groups with SECPAH representatives and monitored. to understand the extent to which the ICF principles Regarding the opinion surveys, out of a total are integrated into SECPAH’s work procedures and of 370 SECPAH practitioners,29 201 completed an assessment instruments, and to what extent the opinion questionnaire (Q2B_SECPAH), which SECPAH professionals understand and promote a makes a response rate of 54 percent. In addition, 187 paradigm shift regarding the disability assessment. SECC specialists also completed a Q2B questionnaire To complete the information on the psychological focusing on the issue of persons with disabilities’ assessment, an interview was conducted with the transition from childhood to adulthood.30 Regarding head of the psycho-pedagogy department of Babeș- the disability determination, 46 CEPAH members Bolyai University from Cluj-Napoca, as well as a and 19 CPC members completed Q3B_CEPAH.31 lecturer at the special psycho-pedagogy department These respondents provided data on the practices of the University of Bucharest. and experiences of evaluation commissions from 23 CEPAH: Other three regional focus groups were counties and 2 districts of Bucharest. carried out with CEPAH members to understand Thus, more than 450 practitioners participated the extent to which the ICF principles are integrated in the opinion surveys, covering all regions of the into their work procedures and reflected in the country, most of the counties, including mostly process of establishing the disability severity women (over 75 percent) but also men, and from category, and to what extent the professionals in this 27 As per Law no. 448/2006 on the protection and promotion of rights of persons with disabilities, republished, as amended and completed. 28 Including the comprehensive assessment report, the certificate of handicap, its annex, the professional orientation certificate, PIRIS, and PIS (and others, if needed). 29 This number represents the total number of SECPAH employees from 36 (of 41) counties and 5 (of 6) districts of Bucharest as reported in the institutional questionnaire Q2A_SECPAH, the section on human capital. Did not provide data on human capital the counties Alba, Caraș-Severin, Covasna, Ilfov, Prahova, and the fourth district of Bucharest. 30 Data on SECC human resources were not collected hence the response rate cannot be determined. 31 The 25 CEPAH that responded to institutional survey Q3A consist of about 125 members. Consequently, the estimated response rate within the opinion survey Q3B is about 37 percent. However, some CEPAH members from counties that have not filled in the Q3A questionnaire also participated in the opinion survey. Therefore, based on the total population of CEPAH members within the country (47 by 5 members), the estimated response rate decreases to around 20 percent. 30 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM commission understand and promote a paradigm Adults with disabilities: A total of 61 semi- shift in the field of disability status evaluations. The structured interviews with persons with disabilities focus groups also aimed to understand how the were conducted online by World Bank experts, out commission’s activity, through access to data and of which some adults with disabilities themselves.35 information on persons with disabilities’ quality of Depending on the level (severity) and type of life, can contribute to documenting public policies disability, the help of a sign language specialist or related to disability. language interpreter was enlisted. Someone caring The discussion groups were structured based for the person with disabilities (personal assistant, on a specific guide and were carried out online, professional personal assistant, or any other facilitated by a World Bank expert. They were family member or person from the person’s with organized regionally; between 6 and 12 specialists disabilities’ support network) could also attend the (from SECPAH, SECC, and CEPAH) from 3–4 interview, particularly if he or she accompanied counties in the region were invited to attend each the interviewee to obtain a disability certificate, group discussion. Invitations were sent to the heads and only with the consent of the interviewee. The of SECPAH/SECC or the CEPAH presidents, as interviews were recorded with the written (or well as to other specialists, to have a diverse set audio recorded) consent of the interviewee and in of respondents in terms of their specialization and compliance with all ethical standards and assurance experience. In total, 61 specialists from 9 counties of data confidentiality per Law no. 363/2018, on the took part in the 7 focus groups.32 The group protection of individuals concerning the processing discussions were recorded, subject to all ethical and of personal data. data confidentiality standards in compliance with For interviews, a variety of adults with Law no. 363/2018.33 disabilities who applied (at least once) for a disability certificate in the 2012–20 period were At the national level: Interviews recruited, including: persons who started the procedure and abandoned it along the way; people NGOs: A total of 20 in-depth interviews were who completed the procedure but were not assigned carried out with NGOs that represent persons a category of disability; young people aged 18–26 with disabilities in Romania and are active and with a disability certificate who made the transition directly involved in the protection, representation, from childhood to adulthood in 2017–20; people and inclusion of persons with disabilities in the who first applied for a disability certificate in the community.34 Of the NGOs, 12 are local, 2 are period immediately following the COVID-19 regional, and 6 are large national federations. pandemic (after March 2020); people who filed Overall, they represent or provide services to over an appeal against the disability certificate (at least 10,000 persons with disabilities. These interviews once) between 2017 and 2020; adults (18+ years aimed to gather the NGOs’ experiences with the old) with a disability certificate and with different disability assessment system (especially with characteristics, so that the group of interviewees SECPAH and CEPAH) and in tackling the obstacles would be as diverse as possible regarding severity that persons with disabilities face in terms of access and type of disability, gender, age, ethnicity, marital to education, health, the labor market, and civic status, level of education, employment history and participation. residence environment. 32 On average, focus group sessions lasted 120 minutes. 33 Law no. 363 of December 28, 2018, on the protection of natural persons regarding the processing of personal data by the competent authorities for the purpose of preventing, discovering, investigating, prosecuting and combating crimes or carrying out punishments, educative measures and precautionary measures. 34 The list of interviewed NGOs is provided in Annex 1; interviews lasted about 90 minutes, on average. 35 An interview with adults with disabilities lasted 50 minutes, on average. Phase 1: Outreach I 31 Figure 1: Profile of the 61 interviewed adults with disabilities 41 34 32 29 29 22 23 13 14 13 13 14 7 7 5 5 1 3 Large urban Small urban Rural Male Female Never married Married Separated Permanent One year Two years No certificate Severe Marked Medium Minor No certificate Severe with personal assistant Residence Gender Marital status Validity of disability Degree of deficiencies certificate Source: Authors’ calculations based on the disability survey. The interviews with adults with disabilities were Interview Guide 2 — The interaction: Twenty carried out in three directions based on three structured interviews focused on the interaction separate guides, which are presented below. between the person and the key institutional Interview Guide 1 — The journey: Thirty- actors along the disability assessment delivery five interviews captured the opinions of adults chain. During these interviews, researchers guided with disabilities on their direct experiences with the adults with disabilities to talk about the way each step of the assessment process, including they perceive they have been treated by medical staff in hospitals, social workers in SPAS, and suggestions for improvement, using a person- DGSACP employees in the run-up to submitting centered design approach. This guide was aimed at their application to SECPAH. Also discussed were the entire population of adults who have applied what financial and time resources it took to submit for classification in a category and type of disability, their application, how they collaborated with the whether they have abandoned the procedure SECPAH team and CEPAH members, and how the along the way or were eventually not assigned any procedure went compared to their expectations, category of disability. These interviews allow the but also in relation to their specific needs, as well person’s journey along the disability assessment as how they would have liked to have been treated. delivery chain to be systematically structured across Interview Guide 3 — The grievances: Six four dimensions: (i) the actions that were taken by interviews referred to the experiences they had that person; (ii) the time required to complete that as claimants in the process of challenging the stage; (iii) the costs paid by the person during that disability certificate (which assigns the person stage; and (iv) how the person felt at the end of the a degree and type of disability): whether/how stage. During the interview, the interviewee could they were informed, whether/how they received freely describe the process of obtaining a disability support/assistance before, during, and after the certificate and its results.36 If the natural storytelling proceedings; how they perceived the treatment did not yield the stage spontaneously or did not they received in court; how they would have liked provide enough answers about the four research to have been treated, and/or what they think would dimensions, the researcher guided the interviewee have improved things, based on how they evaluate through easy-to-understand questions. and reflect on their experience. 36 For example, a person with disabilities said, “I could no longer move. I started to go to the doctor. I went to 7 doctors; it took me 3 months to get the medical report and spent more than 500 lei. I was tired and felt awful after I had spent so much time in hospital corridors. After that, all the other papers came.” In this case, the researcher recorded (i) 7 visits to doctors; (ii) 3 months; (iii) over 500 lei; and (iv) “I felt awful.” 32 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 1. Scope of the study37 This report describes and analyzes the disability Pensions. These assessments are mainly medical assessment system of adults (18 years or older) in and are not based on a bio-psychosocial approach Romania. Two delineations are necessary. to disability. First, Romania has two disability systems— There were several projects39 that sought to unify “invalidity” and “handicap”—with separate legal the system for assessing the situation of persons and institutional frameworks, as shown in Box 1. with disabilities with the system for assessing According to the Terms of Reference of the present work capacity (invalidity). However, the previous RAS, this report is limited to the second system; projects did not have any of the results pursued by the invalidity assessment is out of the scope of this the legislation, and the assessment of work capacity report and the current RAS agreement. The granting has remained a separate system. Currently, there of invalidity pensions is based on a different system is no analysis of the profile of invalidity pension of assessing a person’s situation, associated with beneficiaries, and no coordination between the a decrease in work capacity.38 Invalidity pensions ANDPDCA and the National House of Public are paid to persons who have not yet reached the Pensions to streamline policies for persons with standard retirement age, have lost all or at least half disabilities. Some of those who receive invalidity of their work capacity, and have made contributions pensions cumulate disability-related benefits, but for a predefined period. The assessment of work there is no analysis of how these benefits overlap capacity to establish the degree of invalidity is made or how the cumulation of benefits might create on request by a specialist doctor in occupational additional disincentives to enter the labor market. medicine within the National House of Public 37 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 38 Grigoraș et al. (coord.), World Bank (2020: 128). 39 For example, the project implemented by the Ministry of Labor and Social Protection between 2016 and 2018, 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). Chapter 1 I 33 A short history of Romania’s two disability systems In 2002, the development of the criteria reached a turning point. The assessment of adults became the responsibility of the medical expert commissions of the Territorial Inspectorates for People with Disabilities (specialized units at the county level). The assessment criteria were revised by Order of the Ministry of Health and Family no. 726 of 1 The invalidity pension represents the traditional disability system in Romania, set up October 2002 on the criteria for determining the degree of disability for adults and applying special protection during the communist regime. The second disability system (regarding “handicap” and measures for them. Although in the text of the order they were called “medico-social,” their content referred strictly not related to social insurance) was initiated in 1995. For the period 1995–1999, the to the medical diagnosis and its stage or severity. At the same time, the assessment of children was undertaken by disability assessment and determination was regulated by Law no. 53/1992 on the the county child protection commissions. Unlike for adults, the criteria for assessing children were first aligned with special protection of persons with disabilities. A certificate was issued by the medical the ICF by the Joint Order of the Ministry of Health and Family and the National Authority for Child Protection and expertise and work capacity recovery commissions working within the medical expertise Adoption no. 725/12709 of 1 October 2002 on the criteria for determining the degree of disability of children and and work capacity recovery offices. These offices operated in the territorial polyclinics. The criteria used during this applying special protection measures to them. The criteria included both elements relating to the assessment of period were strictly medical, with the Baremas method being the dominant one.40 impairment of the body’s functions and structures, as well as activity limitations and participation restrictions. At In 2000, the second disability system was created, completely independent from the invalidity system. The the same time, since 2002, once the disability classification certificates were issued, the two commissions (adults responsibility41 of issuing disability certificates was given to the newly established medical commissions at the and children) were obliged to draw up an “Individual Rehabilitation and Social Integration Program” (PIRIS), which county level.42 Once the new system was set up, the number of adults classified by degree and type of disability provided for the medical, educational, vocational, and social actions necessary for the recovery, rehabilitation, increased sharply at the beginning of 2000s, reaching almost half a million persons in 2006, compared with less training, and social integration or reintegration of the person with disability. than 25,000 in 1999. Also, in 2000, a major reform in the child protection sector was undertaken and the County Directorates for Social Assistance and Child Protection (now DGASPC) were established. Starting in 2006, the system was modernized to introduce the specialized comprehensive assessment services within the DGASPC. The assessment of adults with disabilities was transferred to the DGASPC and placed under Evolution of the number of invalidity pensioners and persons with disability (”handicap”) certificate in the responsibility of the assessment commissions for adults with disabilities, based on Law no. 448/2006 on the protection and promotion of the rights of persons with disabilities, as subsequently amended and updated. Romania, 1992–2020 Since 2006, this law has become the framework law in the field of disability. After 2006, in the area of disability in 1000000 children, the boost generated by the translation of the ICF-CY into Romanian, the pressure from the child protection 900000 specialists and the political decisions taken at the level of the National Authority for Child Protection and Adoption 800000 led to a more accelerated introduction of bio-psycho-social criteria in the assessment. Currently, the assessment is 700000 regulated by the Joint Order of the Ministry of Health and the Ministry of Labor, Family, Social Protection and the 600000 Elderly no. 1306/1883/2016 of 17 November 2016 approving the bio-psycho-social criteria for classifying children 500000 400000 with disabilities. 300000 In 2007, the assessment criteria used for adults were revised and renamed “medico-psychosocial” criteria.45 200000 100000 Although the intention of the Romanian legislator was to align the adult disability assessment criteria with the ICF, 0 the result unfortunately remains a reflection of the three methods used at European level before 2001: the Baremas method, the functional capacity method, and the care needs assessment method.46 The latter is the only element 1992 1993 1994 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 2020 that adds value to the previous criteria from 2002. Attempts to introduce ICF-based bio-psycho-social criteria in Number of invalidity pensioners Number of persons with handicap certification the assessment of adults with disabilities from 2014–18 were discontinued by the Ministry of Labor, Family, Social Protection and Elderly People before completion, due to technical and administrative difficulties of the national Source: MMPS/ANDPDCA, multiple Statistical Bulletins. coordinating bodies, as well as the county assessment teams, to integrate the new assessment paradigm. Note: Up to 2005, data as of September 30. Starting from 2006, data as of December 31. However, the two disability systems have remained completely separate and use different types of assessments. A person can obtain both invalidity and disability certificates and benefits, based on distinct assessments. Statistical Between 1999 and 2002, the assessment was regulated by EGO no. 102/1999 on the special protection and data and reporting have also been separated. At the end of 2020, the Statistical Bulletin reported 493,671 invalidity employment of people with disabilities, and was characterized by a combination of the Baremas method and the pensioners and 857,638 persons classified by degree and type of disability (“handicap”). functional capacity method.43 The criteria used in the assessment process, both for children and adults, were called “criteria of anatomo-clinical diagnosis, functional diagnosis and assessment of work and self-serving capacity.”44 The assessment criteria were based on “functional impairment, therapeutic possibilities and psychosocial assessment,” but in reality, the elements of the person’s social context, activity limitations, were practically nonexistent in the analysis and assessment process. 40 The Baremas method consists of using reference scales, to which values or percentages are attached, to define impairment, according to the Council of Europe (2002: 13). 45 These were included in the Joint Order of the Minister of Labor, Family and Equal Opportunities and the Minister of Public 41 As per Order no. 66/2000 of the State Secretariat for persons with disabilities. Health no. 762/1.992/2007 approving the medical-psycho-social criteria for disability determination, with subsequent 42 According to Order no. 102/1999 modified and completed by EGO no. 40/2000. amendments and additions: Order no. 982/692/2013, Order no. 707/538/2014, Order no. 131/90/2015, Order no. 43 The functional capacity method is based on descriptors of the person’s abilities or difficulties in relation to different body 874/554/2016, Order no. 1070/403/2018, Order no. 741/577/2019. functions, according to the Council of Europe (2002: 13). 46 The care needs assessment method refers to the time periods or amount of care needed by the person with a disability, 44 EGO no. 102/1999, Art. 2. according to the Council of Europe (2002: 13). 34 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 1 I 35 Second, regarding the assessment of children with transition to adult life; (iii) the age of 16 is also the disabilities, this report is limited to discussing legal age for expressing informed consent in specific the transition from childhood to adulthood. In medical situations regarding reproductive health Romania, the legal and institutional framework (Law 95/2006 on health care reform); (iv) the age of for assessing disability in children (up to 18 years 26, although older than the UN and World Health old) is different than that for adults. The next Organization (WHO) definitions for “young” (15– chapters will present only briefly how the disability 24 years),49 is in line with Law 272/2004 on the assessment and determination for children is done protection and promotion of child rights, and it to highlight ways in which the two systems can be ensures a unitary/integrated approach between the better coordinated. However, most of the analysis protection system for children and that for persons is focused on young people aged 16–26 and their with disabilities, as a young person can benefit transition from the disability assessment as children from special protection, at their request, if they are to that as adults when they turn 18. in school through age of 26; (v) the age of 26 also The 16–26 age bracket was chosen for the takes into consideration, from a medical point of following reasons: (i) the age of 16 represents the view, the prolonged adolescence (up to 25) and the minimum age of employment (Labor Code),47 delay in development and education that children which is an attribute of independent living that with disabilities can experience, especially those was considered in legally setting the minimum with mental and psychic deficiencies. age for the transition to adult life (Joint Order The next sections of this chapter introduce the 1985/1305/5805/2016); (ii) the age of 16 is also the main regulations and institutions that shape the age at which discernment is presumed,48 which is disability assessment and determination of adults another aspect that was taken into account when in Romania. legally establishing the minimum age for the 1.1. Legal framework Romania benefits from a legal framework that mental and/or associated deficiencies.” The regulates the disability assessment system, named Romanian legislation refers to “protection measures “classification into degree and type of handicap” in support of social integration and inclusion” within the national legislation (Chapter VI, Law (Law no. 448/ 2006) and to “special protection of no. 448/2006). In Romania, the rights of persons persons with disabilities” (Constitution, Art. 50), with disabilities are established by the Constitution while the UNCRPD refers to “the full and effective (Art. 50), Law no. 448/2006 on the protection and participation of people in society, on equal terms promotion of the rights of persons with disabilities, with others.” and the Convention on the Rights of Persons with According to the national legislation, in Romania, Disabilities (UNCRPD, ratified through Law no. persons with disabilities benefit from rights to 221/2010). The key regulations in the disability (i) health protection - prevention, treatment, and field are listed in Annex 2. recovery; (ii) professional education and training; The national legislation uses different (iii) occupation and adaptation of the workplace, terminology than the UNCRPD. The term professional orientation, and reconversion; “disability” is enshrined in UNCRPD (Art. 1, (iv) social assistance, i.e., social services and Scope), while the Romanian Constitution (Art. 50) social performances; (v) dwelling, arrangement and Law no. 448/2006 (Art. 2, para. 1) use the term of the surrounding personal environment, “handicap,” so that in Romania, “disability” and transport, access to the physical, informational, “handicap” have the same meaning. Regarding the and communicational environment; (vi) leisure definition of persons with disability/handicap, the time, access to culture, sport, tourism; (vii) legal UNCRPD refers to “physical, mental, intellectual or assistance; (viii) fiscal facilities; and (ix) disability sensory deficiencies of long duration,” whereas Law assessment and reassessment by examination no. 448/2006 refers to “physical, sensory, psychic, at home for immobilized persons, every two 47 With the written consent of the parents can be 15 years. 48 According to the Penal Code, the minor who has reached the age of 16 is criminally liable according to the law. 49 The age of 26 is also in line with the Law of Youth 350/2006, which defines young people as between 14 and 35 years old. 36 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM years.50 The promotion and observance of the rights with other documents, such as a vocational of persons with disabilities are mainly the duty of orientation certificate and the PIRIS, including the local public administration authorities where recommended activities and services that the the person with disabilities has his/her domicile or adult needs, as well as protection measures residence and, in the subsidiary, of the central public such as admission to residential or day centers, administration authorities, and, complementarily, public or public-private; placement with a of the civil society, and his/her family or legal professional personal assistant; and home care representative. Based on the equal chances services, where appropriate. The activity of the principle, the competent public authorities shall evaluation commission is methodologically ensure the necessary financial resources and take coordinated by ANDPDCA,55 through the specific measures so that persons with disabilities Higher Commission for Assessing the Adults have direct and unlimited access to services.51 with Disabilities (CSEPAH) that carries out Access to the previously mentioned rights methodological coordination activities and conferred by the law is conditioned by the existence monitors the assessment and classification into of a disability certificate, which is the document a degree and type of deficiency.56 that testifies a person is classified into a degree and The key institutional actors mentioned above are type of deficiency (“handicap”). According to the detailed in Section 1.2, while the process is analyzed law, the process of assessing the degree and type of in the following chapters of the report. deficiency must be governed by the eight guiding Disability certificates can be challenged57 within principles of the UNCRPD.52 Currently, this is 30 calendar days of being received, to the competent regulated as a three-stage process: administrative contentious court, according to the 1. The first stage involves the SPAS at the Law of Administrative Litigation no. 554/2004 (see community level, where the person should details in Chapter 7). The disability certificate can register and obtain a mandatory social inquiry. only be annulled based on an action filed in court. 2. The second stage refers to the disability According to the law, appeals against the disability assessment53 done by the specialized services of certificate should be swiftly judged.58 The plaintiff comprehensive assessment for adults (SECPAH) can benefit from both extrajudicial and judicial from the county/Bucharest district level, based assistance for contesting the disability certificate on the medico-psychosocial criteria.54 (including to request summons and representation in the process). In this case, public legal aid is 3. The third stage refers to the final decision granted, regardless of the applicant’s material regarding the degree and type of deficiency, condition.59 The person with disabilities has the which is the responsibility of the CEPAH right to a representative under the conditions of Art. at the county/Bucharest district level. The 58 para. 3 that establishes the limits and duration of evaluation commission for adults issues the the representation.60 certificate of degree and type of deficiency, along 50 Law no. 448 of 2006, Art. 6. 51 Law no. 448 of 2006, Art. 7. 52 The eight guiding principles are (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; and (viii) respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. 53 GD no. 430/2008 on the organization and functioning of the Commission for Assessing Adults with Handicap, Annex 4 Methodology. 54 Law no. 448/2006 (Art. 85, para. 10) and Order no. 762/1.992/2007 for the approval of the medico-psychosocial criteria based on which a degree of disability is established. 55 Law no. 448/2006, Art. 87. 56 Law no. 448/2006, Art. 90, para. 1. 57 Law no. 448/2006, Art. 87, para. 5. 58 Law no. 448/2006, Art. 25, para. 2. 59 EGO no. 51/2008 on public legal aid in civil matters, Art. 8. 60 Code of Civil Procedure, Art. 80. Chapter 1 I 37 1.2. Institutional framework This subchapter presents the governmental the SECPAH, part of the DGASPC, are responsible institutions in charge of the disability assessment for for checking and analyzing the file of someone adults, while a second section brings information applying for disability assessment; conducting the on NGOs for persons with disability active in assessment; and making recommendations about Romania. the person’s type and degree of deficiency, as well as on his or her PIRIS and PIS. CEPAH is the specialized 1.2.1. The Governmental Institutions body of County Councils61 that takes the final in Charge with the Disability decision regarding the type and degree of disability. The Higher Commission (CSEPAH) ensures the Assessment in Romania methodological coordination and monitoring Romania’s current disability assessment system of the disability assessment and determination. involves several institutions at different levels (see The ANDPDCA elaborates, implements, and Flowchart 1). First, at the local level, social workers monitors the disability assessment system. The or social work departments are responsible for next paragraphs present the attributions of these conducting a social inquiry, a mandatory step in the key institutional actors as stipulated in the current disability assessment process. At the county level, legislation. Flowchart 1: Key institutional actors involved in Romania’s disability assessment system MMPS MoH CENTRAL Superior ANDPDCA Commission CEPAH Administrative Secretariat and Fiscal County Litigation COUNTY Councils Divisions in DGASPC SECPAH tribunals Local LOCAL Councils SPAS Source: Authors. At the local level SPAS: Following the current regulations, the SPAS registering office of DGASPC. The social workers at the community level is the main institution from SPAS complete the social inquiry necessary to responsible both at the beginning and the end apply for a disability certificate. Also, after a person of the delivery chain. Thus, in compliance with receives the disability certificate, SPAS oversees GD no. 430/2008, (Art. 6, para. 6, letter a), the file the provision of many of the benefits and services, for certifying the various degrees of disability is as well as ensuring the case management of those submitted by the applicant or legal representative with an individualized plan of intervention under thereof to the registering office of the municipality implementation. in the domicile/residence town or with the 61 As well as for the Local Councils for the districts of Bucharest. 38 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM At the county level protection measure established, subject to law, if the circumstances under which the measure was SECPAH: According to the current legal framework, decided have changed; (iv) releasing professional SECPAH is a county-level institution in charge personal assistant certificates; (v) informing the of the disability assessment of all adults living in person with disabilities or their legal representative that county. As per Law no. 448/2006 (Art. 88) and about the protection measures established and Law no. 292/2011 (Art. 85, para. 1), the Service obligations incumbent upon them; and (vi) for Comprehensive Assessment for Adults with promoting the rights of persons with disabilities in Disabilities is established at the DGASPC level all their activities. in each (41) county and (6) district of Bucharest. DGASPC: Within the national Framework The SECPAH’s role is to conduct the medico- Procedure for the Assessment of Adult Persons, psychosocial evaluation of adults for assignment Order no. 2298/2012, Art. 1(2), at the county level, into a deficiency degree category and determine the DGASPC is responsible for “drafting its own needs related to personal care. According to detailed internal procedures for the activity of GD no. 268/2007 (Art. 49), the SECPAH has the assessing adults in order to establish their level and following main responsibilities: (i) conducts the type of disability.” The research underlying this comprehensive evaluation/reevaluation of adults report focused on the various operating models and applying for a (new) disability certificate, at their practices developed and used at the county level to own offices or at the person’s residence; (ii) drafts assess adults for their degree and type of disability, the comprehensive evaluation report for each as well as to ensure the transition from childhood evaluated person; (iii) makes a recommendation to adulthood targeting young persons aged 16–26. for the assignment of a person into a disability DGASPC also appoints a secretariat for CEPAH category and type (or rejects the application), and that has the following main responsibilities: (i) for the PIRIS; (iv) endorses the PIS of the person receives and registers the files of adults evaluated with a disability certificate, which is drafted by the by the SECPAH; (ii) prepares and participates in case manager; (v) evaluates whether the necessary CEPAH meetings, with no role in the decision; (iii) conditions are met for certification as a professional draws up minutes and keeps records of CEPAH personal assistant, drafts the comprehensive meetings; (iv) drafts the certificates that classify evaluation report, and makes recommendations the degree/type of disability and certificates of to the CEPAH; and (vi) recommends protection professional orientation, within a maximum of measures for the person with a disability certificate, three working days from the date the CEPAH according to the law. meeting took place; (v) manages the registry of CEPAH: Current regulations establish CEPAH as appeals; (vi) notifies applicants of the results and the body responsible for determining both disability sends the disability certificate, with all the other and the benefit-service package for persons with documents approved by the CEPAH (certificate of disabilities in a county/Bucharest district. CEPAH professional orientation, individual rehabilitation, is organized and operates as per the provisions of and social integration program—PIRIS, PIS, etc.); Art. 85 of Law no. 448/2006, as a specialized body and (vii) fulfills any other attributions established, with no legal personality, attached to the County under the conditions provided by law, by the head and Local Council of each district of Bucharest. of DGASPC.63 Thus, the CEPAH assigns adults a deficiency degree category, as well as promotes the rights of persons At the national level with disabilities. CEPAH’s key responsibilities include:62 (i) assigning adults to deficiency degree MMPS: The Ministry of Labor and Social Protection categories and the certificate’s period of validity, as fulfills the following specific duties in the field of applicable; the date of disability onset; establishing protection of persons with disabilities: (i) initiates the professional orientation of adults with and approves the drafts of normative acts; (ii) disabilities, based on the comprehensive assessment monitors and evaluates the implementation of report prepared by SECPAH; (ii) establishing the policies and strategies; and (iii) accredits the social measures for protecting adults with disabilities, services.64 as provided by law; (iii) repealing or replacing the 62 Law no. 448/2006, Art. 87, para.1. 63 GD no. 430/2008, Art. 15. 64 GD no. 81/2020 on the organization and functioning of the Ministry of Labor and Social Protection. Chapter 1 I 39 MoH: The Ministry of Health, through its 1.2.2. The NGOs for People with Disabilities specialties commissions, plays a major role in Romania in establishing and modifying the disability assessment criteria. Additionally, the MoH is In Romania, the establishment and functioning of responsible for many national health programs NGOs are regulated by Ordinance no. 26/2000 on of critical importance for the well-being of people associations and foundations. NGOs are associative with disabilities. bodies created voluntarily by natural or legal ANDPDCA: The National Authority for the persons, with the role of promoting civic values, Rights of Persons with Disabilities, Children and democracy, and the rule of law. Three types of NGO Adoption was established in 2019 (EGO no. 68/2019) are recognized, namely associations, foundations, by incorporating the National Authority for Persons and federations. with Disabilities and the National Authority for the The movement of people with disabilities in Protection of Children Rights and Adoption, which Romania includes organizations that represent were disbanded. Thus, ANDPDCA has undertaken people with specific types of disability (physical, the duties of the former National Authority for visual, auditory, intellectual, rare disease, chronic Persons with Disabilities, which, among other disease, HIV/AIDS, etc.), organizations coordinated responsibilities: (i) elaborates, implements, and by parents of people with disabilities, and monitors the disability assessment system; and organizations that provide social or rehabilitation (ii) elaborates methodologies, norms and working services to people with disabilities. The main role procedures, and evaluation and monitoring tools of these organizations is to promote and protect necessary for the disability system’s organization the rights of people with disabilities and remove and functioning. obstacles to accessing education, health, the labor CSEPAH: As part of the ANDPDCA, the Higher market, and social participation. Commission for Assessing Adults with Disabilities Among the nationally representative NGOs was initially set up (through Order no. 1261/2016) for people with disabilities are the Federation of as the national body responsible for resolving the National Council of Disability in Romania grievance and appeal cases. Although Order no. (CNDR), the Coalition of Patient Organizations 1261/2016 has not been revised, the provisions with Chronic Diseases in Romania (COPAC), the governing the grievances and redress mechanism National Union of Organizations of People Living have been amended as per EGO no. 51/2017, with HIV/AIDS (UNOPA), the Federation of the according to which the complaints against the National Organization of Persons with Disabilities disability certificate should be filed with the courts in Romania (ONPHR), the Foundation Motivation that handle administrative disputes. Consequently, Romania, the Federation of Nongovernmental the role of the CSEPAH as part of the grievance and Organizations for Social Services (FONSS), the redress mechanism has been canceled. Currently, Dizabnet Federation, and the “Alături de Voi” ANDPDCA Order no. 136/2020 specifies that the Romania Foundation (ADV). More details about CSEPAH ensures the methodological coordination NGOs for people with disabilities are provided in and monitors the evaluation and classification by Annex 3. Some of the largest NGOs for persons degree/type of deficiency, at the national level, and with disabilities receive financial support from the it fulfills the duties provided by Law no. 448/2006 state budget through ANDPDCA.65 on the protection and promotion of the rights of NGOs play an active role in disability assessment. persons with disabilities. According to Art. 85 of Law no. 448/2006, any CEPAH must include as a member an NGO representative appointed by the County and Local Council of each Bucharest district, respectively. 65 These include the Association of the Blind in Romania, the National Association of the Deaf in Romania, the Romanian Association of the Blind War Invalids, the National League of Organizations with Persons with Disabilities from the Craft Cooperative, and the Romanian National Disability Council. (ANDPDCA Order no. 136, Section 13, para. 6). 40 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 1.3. People with disabilities in Romania: National statistics According to the Ministry of Labor and Social severe limitations in their regular activities) lower Protection (MMPS), in Romania there were 857,638 than the EU-28 average (6.1 percent of the total people with a valid disability certificate on December population compared to 7.3 percent), and much 31, 2020, representing 3.87 percent of Romania’s lower than countries such as Estonia, Croatia, stable population. However, not all adults with a Greece, Austria, Belgium, France, Montenegro health condition mentioned in the disability criteria or Slovakia (with rates of 9 percent or higher), as apply for a certificate or they abandon the process shown in Figure 2a.66 along the way. Regarding those who do not apply Based on the MMPS/ANDPDCA statistics, or abandon the process, the representatives of the number of people with disabilities is steadily SPAS, SECPAH, and CEPAH provided estimates in increasing over time, rising from half a million the institutional studies conducted for this report. in 2006 to 857,638 people in 2020, children and According to these estimates, the “real” share of adults (Figure 2b and Box 1). Most of these people people who could apply for a disability certificate are women (over 53 percent) over the age of 50 would have been higher than the officially reported (approximately 66 percent of the total),67 as can rate; that is, 4.7 percent of the total population, at 2020 be seen in Figure 2c. In fact, the share of women levels. Finally, a third estimate of the rate of people increases monotonously with age, from under 40 with disabilities is provided by Eurostat, based on percent in the age group 5-14 years, to almost 58 internationally comparable statistics. Eurostat uses percent of people aged 70–79 years, respectively 68 a different definition of disability, namely the rate percent of those aged 80 and over. In terms of the of people (aged 16 and over) with self-reported type of deficiency, as illustrated in Figure 2d, the severe limitations in normal activities due to health majority of adults with disabilities have a physical problems. According to this definition, Romania (27 percent), somatic (19 percent), or mental type (16 registers a rate of disabilities even higher than the percent) of deficiency. The other types of disability official rate of 3.87 percent persons with certificate include associated handicap (13 percent), visual (11 or 4.7 percent persons with impaired health (with or percent), psychic (10 percent), auditory (3 percent) without certificate), namely 6.1 percent of the total and HIV/AIDS (1 percent). Finally, in terms of the population (Figure 2b). So, information at national deficiency degree, most adults with disabilities level on the population of people with disabilities is have a marked (51.4 percent) or severe handicap marked by discrepancies caused mainly by system (38.3 percent), while an medium degree has 9.3 fragmentation in “invalidity” and “handicap,” percent and a minor degree have only 1 percent of as we showed at the beginning of the chapter, as the total.68 well as the dysfunctions of the current system. A vast majority of people with disabilities live The discrepancies and incompleteness of the data with families or on their own, while only 2 percent are accompanied by the absence of a system that are institutionalized in public centers managed allows either a census of people with disabilities by MMPS/ANDPDCA. The disability rates differ in the country (invalidity and handicap) or real- significantly across regions, ranging from 8.2 percent time data on benefits and assistance they received in Mehedinți, 6.9 percent in Vâlcea or 6.2 in Olt, in a reference period. As accurate information is while 2.8 percent in Covasna and 2.5 percent in Dolj. crucial for policy making, planning, budgeting, Maps 2 and 3 illustrate the existing discrepancies and monitoring of policy implementation, the between counties regarding the number and rate of effectiveness of the system cannot currently be people with disabilities. The significant difference rigorously assessed. across regions suggests a significant variation in the In the European context, Romania has a lower assessment processes. share of people with disabilities (who self-declare 66 Eurostat date for 2019. The 2020 data are not available for some countries, including Romania. 67 Close to half of the persons with disabilities (47 percent) are elderly (older than 65) while 8.5 percent are children. 68 By contrast, the distribution of children with disabilities by deficiency degree is the following: severe – 59 percent, marked – 14 percent, medium – 25 percent, and minor – 2 percent. Chapter 1 I 41 Figure 2: Disability statistics from Eurostat and the Ministry of Labor and Social Protection a. Rate of persons (16+ years old) with self-reported b. Evolution of the rates of persons with disabilities in severe limitations in usual activities, due to health Romania (%) problems, by gender, 2019 14 12 9 8 10 7 6 % of total population 5 8 7,7 4 3 6 6 2 1 4,3 0 4 2012 2013 2014 2015 2016 2017 2018 2019 2020 2 1. Rate of persons with a disability certificate (% in total stable population) 0 2. Rate of the estimated population with impaired Malta Bulgaria Spain Sweden Netherlands Ireland Italy Denmark Romania Lithuania Cyprus Germany Hungary Luxembourg Finland Poland Czechia Portugal Latvia Slovenia Austria Belgium France Slovakia Greece Croatia Estonia health, with or without disability certificate (% in total population)* 3. Rate of persons (16+ years old) with self-reported severe limitations in usual activities, due to health Total Males Females problems Sources: a. Eurostat [HLTH_SILC_07]; b1. MMPS/ANDPDCA, Statistical Bulletin (2021); b2. Consolidated data from the SPAS survey and the opinion surveys Q2B_SECPAH and Q3B_CEPAH; b3. Eurostat [HLTH_SILC_07]. c. Distribution of persons with a disability certificate by d. Distribution of adults with a disability certificate by age groups, in Romania (number) deficiency type, in Romania (%) 200,000 180,000 160,000 Psychic, 140,000 10 120,000 100,000 Visual, 11 80,000 Physical, 27 60,000 784,364 40,000 adults with 20,000 Associated, disabilities 0 13 5- ld -1 . -1 . -1 . -2 . -2 . -3 . -4 . -5 . -6 . 80 0-7 .o. ar . . 10 .o 15 y.o 18 y.o 20 y.o 25 y.o 30 y.o 40 y.o 50 y.o 60 y.o ye .o ld o 9y 7 y + 9y so 4 7 9 4 9 9 9 9 9 rs Somatic, 19 a Mental, 16 ye 40 0- Source: MMPS/ANDPDCA, Statistical Bulletin for December 31, 2020. 42 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Map 2: Discrepancies between counties regarding number of adults with disabilities registered in the county Source: MMPS/ANDPDCA, Statistical Bulletin for December 31, 2019. Map 3: Discrepancies between counties regarding the proportion of total persons with disabilities in total population of the county (%) Source: MMPS/ANDPDCA, Statistical Bulletin for December 31, 2019. Chapter 1 I 43 1.4. Analytical framework: Overview of Romania’s disability assessment system The disability assessment system is approached in and determination refer to the degree and type of this report using the framework of social protection deficiency, and the benefits and services are those delivery systems as defined in the Sourcebook on for people with disabilities, as shown in Flowchart the Foundations of the Social Protection Delivery 2. In addition, the actual provision of benefits and Systems.69 Therefore, the framework of analysis is services is only marginally treated.70 anchored in the core implementation phases along In terms of concepts, we distinguish between the delivery chain, which includes (1) outreach, (2) disability assessment, disability determination, intake and registration, (3) disability assessment, and disability eligibility, as defined in Bickenbach (4) disability determination, (5) individual plans et al. (2015): “disability assessment is the process of of intervention (determination of benefits and making an authoritative determination about the service package), and persons with disabilities’ kind and extent of disability a person has, as part access to the benefit-service package associated of a larger administrative process usually called with the disability certificate in Romania, as well as disability evaluation or disability determination” (6) beneficiary operations management including while “disability evaluation, which includes their compliance, data updates, grievances, and disability assessment as a component, determines exits from the system. In this report, the general the eligibility of an individual claimant for some analytical framework is adapted, the assessment social benefit, service, or protection.”71  Flowchart 2: Core implementation phases of disability assessment in Romania Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE Source: Adapted to the Romanian context after Lindert et al. (eds.) World Bank (2020: 11). 69 Lindert et al. (eds.), World Bank (2020). 70 For such an analysis, see Grigoraș et al. (coord.), World Bank (2020: 128). 71 Bickenbach et al. (2015). 44 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Infographic 2: Overall statistics on the reference population groups corresponding to the Romanian’s disability assessment system, by core implementation phase, for November 2020 INTAKE DISABILITY INDIVIDUAL OUTREACH AND DISABILITY PLANS FOR SOCIAL REGISTRATION ASSESSMENT DETERMINATION REINTEGRATION 1 2 3 4 5 Estimated Registration at Disability Disability Individual plans of population in SECPAH assessment determination intervention and need (SECPAH) (CEPAH) access to services PIRIS PIS Professional orientation Protection measure Rejected Estimated Registration Disability Disability Individual plans of population at SECPAH assessment deternination intervention and in need (SECPAH) (CEPAH) access to services Admitted 5418 4265 4497 4082 PIRIS = 3581 Rejected -97 -377 -374 PIS = 1183 Professional orientation = 44 Protection measure = 33 Source: Data for November 2020 regarding 10 counties that reported the necessary data. The estimated population in need represents the sum between the current population of people with disabilities and the number of adults who could apply for a degree of disability due to a deficient state of health, but either did not apply or did not get the certificate, as estimated by social workers from SPAS (in Q1), specialists of SECPAH/SECC (in Q2B), members of CEPAH/CPC (in Q3B), and representatives of NGOs (in interviews). Within the delivery chain, the outputs of any implementation phases, as shown in Flowchart 2. implementation phase are inputs in the next, and However, within each chapter, the more detailed changes in any stage may trigger changes in the levels and aspects of implementation are described others. Therefore, in tracing the delivery chain of and analyzed, including the linkages with other the disability assessment system in Romania, the stages. Also, the opinions and beliefs of the various chapters of this report are devoted to individual stakeholders are presented. phases of the delivery chain, namely the core Chapter 1 I 45 Although the disability assessment system’s including people and the institutions presented legal and institutional framework is defined at in the previous section (central and local). Those the national level, the DGASPCs have developed interactions are facilitated by communications, and used at the county level a variety of operating information systems, and technology, among other models that reflect local conditions, resources, and factors. Correspondingly, each chapter addresses decisions of the County Councils. Thus, for each these enabling factors to understand the changes implementation phase, the report presents the that should be made to facilitate the paradigm shift various operating models from the county level. from a medical to a holistic approach. Throughout the delivery chain, the reference In Romania, the disability assessment represents population groups change as the operational status a single-program system that is on-demand of a person with disabilities changes between core (meaning the process is initiated by individuals) implementation phases. The outreach phase targets and allows dynamic inclusion (people can apply, the intended population, which in Romania refers ask for assistance, or update their information at to children and adults “whose social environment, any time). The existence of the parallel system of un-adapted to their physical, sensory, mental, invalidity as well as the separate system for children mental, or associated deficiencies, totally impedes shows that the disability system is characterized by or limits their equal access to society, needing marked fragmentation. The existence of many other protection measures in support of integration program-specific delivery systems for most of the and social inclusion.”72 During the phases of benefit-service packages attached to the disability intake and registration, disability assessment, and certificate (for example, most of the health-related disability determination, the reference group refers ones) deepen the fragmentation. It is costly and to applicants for a disability certificate. Once the inefficient for people to navigate each program certificate is obtained, the reference group changes separately, provide the same information and to persons with disabilities (in Romania, persons documentation over and over, and wait in long classified by degree and type of disability), while it lines at different offices. It is also inefficient for refers to beneficiaries once the benefits and services administrators, because it can result in duplications are provided. Thus, the reference population or gaps in coverage, overlapping processes, and groups change from intended population to wasted resources, making it difficult to keep track of applicants, persons with disabilities (with a which clients have received which services or how disability certificate), and beneficiaries. Infographic social protection money for persons with disabilities 2 shows the dynamic statistics corresponding is spent. The integration of all disability-related to the disability assessment system, in terms of systems in Romania is out of the scope of this report the number of persons included in the reference and these advisory services. Nonetheless, it remains population groups, in 14 counties that provided the a factor that must be considered when designing full set of data for November 2020. the new set of instruments, methodologies, and Key actors interact along the delivery chain, procedures. 1.5. Analytical lens: The ICF/UNCRPD The ICF: functioning and disability and measuring functioning and related problems - that is, disability. The International Classification of Functioning, The ICF is comprised of separate classifications Disability and Health (ICF) has a variety of of Body Functions and Structures, Activities and applications in clinical care, health information Participation, and Environmental Factors (Box systems, health care management, finance, and 2). Each classification has categories arranged in research. In all these contexts, the use of ICF a standard genus-species format. In addition, the requires intermediate instruments: checklists, ICF presents a conceptualization of functioning clinical assessment tests, questionnaires, standard as the experience of living with a health condition data sets, e-health templates, and so on. ICF in one’s daily environment. For each category classifies dimensions of functioning and serves as of functioning, the level of functioning a person a conceptual framework for describing, assessing, 72 Law no. 448/2006, Art. 2, provisions of which benefit Romanian citizens, citizens of other states or who are stateless, during the period in which they have, according to the laws, domicile or residence in Romania. 46 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM experiences is the outcome of the interaction us that functioning and disability are not only between the health problem and the person’s clearly delineated categories in which to integrate physical, interpersonal, attitudinal, social, cultural, individuals, but are the extreme limits of a and political environment. continuum on which we all exist. Each domain of The ICF is based on an interactive person and functioning, at the body, person, or social level, is environment model called the biopsychosocial a continuum ranging from full functioning to no model. ICF does not only refer to disabled functioning. Disability is understood to be at the persons; in fact, ICF refers to everyone. It tells end of this continuum that represents some degree of limitation. In the biopsychosocial integrative model: Health conditions • Functioning is a general term for body functions (disorder or illness) and structures, activities, and participation. • Disability is a general term for impairments/ Functions and Activity Participation deficiencies of body functions and structures, structures of the body (impairments/deficiencies) (limitations) (restrictions) activity limitations, or participation restrictions. The graphic illustration of the model shows that functioning and disability are the result of Environmental factors Personal factors the interaction between the health condition and personal and environmental factors. In other words, the ICF understands the Assessing disability, therefore, requires an phenomena of functioning and disability to be assessment of both the person’s health-related determined both by a person’s intrinsic health capacity and their environment, which together capacity to perform an action and performance of determine their level of performance; that is, the an action in his/her full environmental context. degree of disability they experience. ICF, ICD-10 and WHODAS 2.0 as WHO key instruments for modern disability assessment ICF is the WHO framework for measuring health and disability at both individual and population levels. ICF was officially endorsed by all 191 WHO Member States in the 54th World Health Assembly on May 22, 2001 (resolution WHA 54.21) as the international standard to describe and measure health and disability. The ICF classifies domains of functioning and contextual factors. ICF and ICD-10 are WHO international classifications, and are complementary. ICD-10 provides a “diagnosis” of disease, disorder, injury, or other health condition, while ICF provides an international reference language for the lived experience of these health conditions, considering environmental and personal factors. WHODAS 2.0 is a generic assessment instrument for health and disability, directly linked to ICF concepts. The tool is used across all diseases, including mental, neurological, and addictive disorders. It is short, simple, and easy to administer, applicable in both clinical and general population settings. From the ICF perspective, two people with the same disease may have different levels of functioning, just as two people with the same level of functioning may have different diseases. Because of this, the use of both classifications in conjunction with WHODAS 2.0 assessment instruments increases the quality of data used for medical, rehabilitative, and social purposes. With the help of ICF, the full experience of living with a health condition, both as a matter of intrinsic capacity and actual performance, can be described in internationally comparable language. Chapter 1 I 47 The ICF uses the following dimensions and key principles: Functioning is a general term for body functions and structures, activities, and participation. Body functions are the physiological functions of the body’s systems, including psychological functions. For example: functions of consciousness, temperament and personality, functions of attention, memory, thinking, sensory functions, functions of speech, functions of the cardiovascular system, functions of the respiratory system, and functions of mobility. Body structures are the anatomical parts of the body, such as their organs, limbs, and components. For example: brain structure, spinal cord, eye, ear, cardiovascular system structures, respiratory system structures, head, neck region, shoulder region, skin areas, nails, and hair. Impairments are problems with body functions or structures, such as a significant deviation or loss. For example: accelerated heartbeat (tachycardia) is an impairment of heart function; myopia is an impairment of vision functions; an amputated leg is an impairment of the structure of the lower limb; a fracture is a damage to the bones (as a structure), and so on. Activities are the execution of a task or action by an individual. Participation is involvement in a life situation. Examples include learning to read, making decisions, completing a task, coping with stress, communicating, handling objects, walking, dressing, eating, doing household chores, maintaining interpersonal relationships, and participating in education, employment, and recreation and leisure. Activity limitations are difficulties that an individual has performing activities. Participation restrictions are problems that an individual faces when engaging in life situations. Examples of activity limitations and participation restrictions include not being able to walk (in need of a wheelchair), not being able to manage stress effectively, not being able to have a normal conversation, not being able to go to school at school age, and not having a job. Environmental factors make up the physical, human-built, social and attitudinal environment in which people live and act. For example: mobility products and technologies (such as wheelchairs), communication technologies, building design and construction, financial goods, air quality, family, knowledge, other people’s attitudes, construction architecture, and the social assistance system. Personal factors (not included in the ICF) are the individual’s characteristics that are not part of his health. For example: age, sex, education, social status, life experiences, and habits. Factors in a person’s environment that, through their absence or presence, improve functioning and reduce disability; these are considered facilitators. Factors that limit functioning and create disability are barriers. For example: for a wheelchair user, the steps at the entrance to a building are a barrier, while a ramp with the correct inclination is a facilitator. ICF provides a scientific basis for understanding health and functioning. People with the same health condition may have different functioning; therefore, to see how they live with that health condition, it is necessary to consider all the components mentioned above. Source: https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health What is disability assessment? A disability assessment is a summary measure “whole person” or global assessment of the extent of a person’s performance of an adequately or level of person’s disability. This is important representative set of behaviors and actions, simple because a disability assessment should be a to complex, in their actual environment, in light of summary measure of functioning levels across the person’s state of health. domains of actions, simple and complex, from As the administrative act of establishing walking, taking care of children, to working a job. eligibility for services and supports, disability is A disability assessment considers the overall level assessed as the overall experience of an individual of disability that a person experiences in his or her living with one or more health problems - or, in ICF life. A summary or global assessment of disability, terms, the level of a person’s performance in light necessarily, must be based on both the individual’s of their intrinsic health capacity and environmental state of health and on specific assessments of specific facilitators or barriers. Disability assessment is a activities. Yet a summary assessment of disability 48 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM is only valid if the specific assessments can be assessment is that it assesses disability, and not statistically summarized into a single assessment something else. The ICF is the international score. scientific model of functioning and disability - it not only represents the international scientific Disability assessment and disability consensus on the concept of disability, but provides determination the means for operationalizing disability for measurement purposes. Only in ICF terms is it Across the globe there are many approaches scientifically possible to produce an evidence- to establishing eligibility for health and social based, “whole person” summary assessment of services and supports for individuals who, someone’s experience of disability. Moreover, the because of underlying health problems and ICF model represents the international human impairments, experience some level of disability. rights, legal and ethical consensus on disability, This administrative process goes by various as shown by the UNCRPD, which characterizes names in different countries. As a general matter, disability as the experience of individuals “who however, what is most often termed “disability have long-term physical, mental, intellectual, or evaluation” or “disability determination” is an sensory impairments which in interaction with authoritative, legally sanctioned, administrative various barriers may hinder their full and effective process—which may involve several steps and participation in society on an equal basis with official actors—that provides some form of support, others.” service, or assistance to individuals on the basis Disability assessment must be a valid and of eligibility criteria and a disability assessment reliable assessment of the phenomenon of disability, procedure that identifies the kind, degree, or level and the only prospect for achieving this is a regime of disability a person experiences. The overall of disability assessment in which the assessment process of disability determination may employ instrumentation, threshold criteria, and procedures a variety of other preconditions of eligibility— are aligned with the ICF conceptualization of income level, geographical location, legal status, functioning and disability. employment status, age, and so on—in addition to disability assessment. In some countries, disability The human rights dimension determination and disability assessment are simultaneous administrative acts; in others, they As mentioned, the ICF conceptualization of are separated by additional administrative steps disability is represented in the UNCRPD as a human and official determinations. right, a legal and moral principle. But the human rights dimension of disability assessment extends Why the ICF is the best platform for beyond this. Many rights listed in the UNCRPD disability assessment are also relevant to disability assessment: the procedure, criteria, and means of assessment must The ICF is the only international standard reference be publicly available and transparent; the process language for functioning and disability that is must not be unnecessarily onerous or insult the available. Aligning assessment instrumentation individual’s dignity; the process must be physically with ICF terminology and classification is a and informationally accessible to everyone; and, in precondition for scientific and administrative general, the process must not discriminate against legitimacy as a model of collecting of health and persons with disabilities or violate their human functioning information. rights. More significantly, an intuitively obvious precondition for any scheme of disability Chapter 1 I 49 Infographic 3: Overview of activities regarding the ICF implementation in Romania73 The UNICEF Representation provided the technical and financial assistance for the ICF translation, based on the partnership contract with the RENINCO Association; the translation was done by Gabriela Chiroiu and the validation 2002 group that included Paulian Sima (SSPH), Izabella Popa (ANDPDCA), Mircea Vlad (MEC), Alina Mândroiu (MSF), Ecaterina Vrăsmaș (RENINCO Romania Association and Bucharest University) and Traian Vrăsmaș (RENINCO Romania Association) worked under the technical coordination of Dr. Radu Vrasti. Activity and Participation Component of ICF was integrated within the criteria for establishment of handicap degree for OCTOBER children with disabilities (Joint Order no. 725/12709/2002) based on a project funded by USAID and UNICEF 2002 ANPH73 signed with WHO the contract for granting MARCH publication and translation rights for the ICF. Romania 2003 was the first country in Eastern Europe to translate the ICF. 2003- The UNICEF Representation provided the technical and financial assistance for the ICF publication 2004 and promotion sessions in Romania, based on the partnership contract with the RENINCO Association. ANPH/ANPD included the definition of disability and the measure to Promote the vision and concepts expressed in the International 2005 Classification of Functioning, Disability and Health, 2006-13 in the National Strategy on the Social Protection, Integration and Inclusion of Persons with disabilities for the period 2006–13, “Equal Opportunities for Persons with disabilities—Toward a non-discriminatory society” (GD no. 1175/2005). ANPD formed part of the project Measuring Health and Disability in Europe: Supporting policy development (MHADIE), coordinated by Dr. Matilde Leonardi - Instituto 2005- Nazionale Neurologico Carlo Besta of Milano, Italy, including 11 partner countries. 2007 73 At that moment, ANPD was called the National Authority for Persons with Handicap (ANPH). 50 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Romania ratified the UNCRPD by Law no. 221/2010, which 747576 2010 requires the analysis and revision of the social policies and practices so that persons with disabilities can fully and equally exercise all fundamental rights and freedoms and live-in dignity. ANPD translated and published the International Classification of Functioning, Disabilities and Health - version for children and young persons (ICF-CY), with the support of the UNICEF Representation in Romania, as a result of the initiative and collaboration between Ministry of Labor, Family, Social Protection and the Elderly and the RENINCO Romania Association; the translation was done by Gabriela Chiroiu and the work group to validate 2011- the translation included the following people, mentioned alphabetically: Mirela Chiru (Ministry of Health), Adina Codres (MMFPSPV-DPC),74 Adrian Cozma (ISMB and MECTS),75 Gabriela Dobre (MMFPSPV-DPPH),76 Livius Manea 2012 (Bucharest University), Dana Petcovici (UNICEF), Izabella Popa (MMFPSPV- DPC), Voichita Pop (UNICEF), Paulian Sima (MMFPSPV-DPPH), Aurora Sima (Ministry of Health), Andreea Sorescu (The ‘Învingem autismul’ Association), Monica Stanciu (independent expert), Ecaterina Vrasmas, (RENINCO Romania Association and Bucharest University), Traian Vrasmas (RENINCO Romania Association and „Ovidius” University in Constanta). Activity and Participation Component of ICF-CY was 2012 integrated within the criteria for establishment of handicap degree for children with disabilities (modification of Joint Order no. 725/12709/2002) based on SECC experience. ANPD included concepts from ICF in the National Strategy “A Society Without Barriers for Persons with Disabilities” 2016-20, approved by GD no. 655/2016. 2016 Environmental factors Component of ICF-CY was integrated within DECEMBER biopsychosocial criteria for establishment of handicap degree for 2016 children with disabilities (Joint Order no. 1306/1883/2016) and within the methodology of assessment and intervention (Joint Order no. 1985/1305/5805/2016) based on a project funded by UNICEF. Training sessions for SECC. CPC and representatives from APRIL 2017 education system, including a module on ICF-CY, funded by UNICEF. 74 Former name of the Department for Child Protection (currently under ANDPDCA) within the Ministry of Labor, Family, Social Protection, and the Elderly (currently MMPS). 75 Inspectorate for Education of the Bucharest Municipality (ISMB) under the Ministry of Education, Research, Youth, and Sport (currently Ministry of Education). 76 Former name of the Department for the Protection of Persons with Disabilities (currently under ANDPDCA) within the Ministry of Labor, Family, Social Protection, and the Elderly (currently MMPS). Chapter 1 I 51 1.6. Romania in the world community: Disability assessment Although there is little academic or governmental especially in the labor market. Countries in the research comparing disability policy or assessment same region of the globe may model their policies across countries, it is fair to say that there are a on close neighbors. Still, countries that are formally significant variety of approaches to the disability part of the Commonwealth, colonial groups, or assessment process, criteria, and instrumentation. other affiliations share approaches even if they are Disability policy is generally shaped by historical, not in the same region. Fieldwork at the WHO77 and cultural, and even linguistic factors, and tends to be World Bank suggests there are roughly three broad ad hoc and reactive to specific crises or shocks. It approaches to disability assessment around the is highly fluid and dependent on economic forces, world, as described below: Approach Key features of the disability assessment Examples of countries (1) The advanced Multistage disability assessment procedures with instrumentation based Taiwan, South Korea, modern on the ICF conceptualization of disability that fully considers information Japan, France, England, disability systems on medical condition, extensive documentation of socio-demographic Canada, Nordic countries and environmental audits of home, neighborhood, community, and other dimensions. (2) Countries in Countries in this group are either completing or in the process of Romania, Latvia, transition reforming disability assessment (and often disability policy more Lithuania, Czech broadly) away from a purely medical and discretionary approach to one Republic, Slovenia, that augments medical Baremic instruments with information about Bulgaria, South Africa, the applicants’ activities of daily living and instrumental activities of daily most Latin American living (*) or, increasingly, functioning status in general. countries (3) Medical- The disability assessment relies on a decision by a medical professional, Greece, Saudi Arabia, based based on clinical judgment alone, with or without a template or Baremic Russia, Turkey, assessments medical expertise table. Azerbaijan, nearly all African countries Source: Authors. Notes: (*) ADLs - activities of daily living are basic self-care tasks. The six basic ADLs are eating, bathing, dressing, toileting, mobility, and grooming. IADLs - instrumental activities of daily living include managing finances, handling transportation, shopping, preparing meals, using the telephone or other communication devices, managing medications, laundry, housework, and basic home maintenance. Together, these skills represent what someone needs to successfully and independently live on their own. (1) The advanced modern disability systems Many high-resource countries have developed home, neighborhood, and community, as well as advanced modern disability systems based on ICF other dimensions. Instrumentation includes either principles. High-resource countries such as Taiwan, standardized international tools or ICF-based tools South Korea, Japan, France, England, Canada, that have been thoroughly tested and have good and the Nordic countries have created complex, psychometric properties. multistage disability assessment procedures with The Taiwanese system is one of the most instrumentation based on the ICF conceptualization sophisticated and scientifically sound in the world, of disability that fully record information on medical and its critical steps are presented in Box 3. The other condition and history, impairments of body function countries in the first group have similarly complex, and structure, the performance of activities of daily multi-instrument processes that incorporate living and instrumental activities of daily living, medical, rehabilitative, socio-demographic, and documentation of major life areas such as education, home/neighborhood/community environmental work, and community life, extensive documentation information to supplement a broad-based of socio-demographic and environmental audits of functioning assessment. Needs assessments are 77 For example, https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health 52 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM uniformly employed for service matching. All health, social, and vocational supports and services countries in this group, significantly, are not only available to persons with disabilities. well-resourced, but they all have a wide range of Taiwan’s disability assessment Taiwan has one of the most sophisticated and scientifically sound disability assessment systems in the world. Taiwan’s system is comprised of five phases: • A medical screening protocol is used in which applicants are either diverted to other health or social services (or simply denied further consideration), or moved to a secondary, complete medical analysis based on health records and a medical expertise template (or in-person examinations). • Next, a team of health professionals use a separate impairment checklist to identify specific problems in body function and structure. Together, these two instruments form the basis for a preliminary and reviewable administrative decision on whether the applicant should proceed for disability assessment or be diverted to medical, psychiatric, or rehabilitation services for care and treatment. • Social workers then administer an extensive questionnaire and occupational therapists on activities of daily living and instrumental activities of daily living, based on a modified version of the WHO’s WHODAS 2.0 instrument, which was developed and thoroughly tested. A separate socio-demographic and environmental template is used to fully describe the applicant’s situation (and may involve home visits). If further details are required, especially if the return to work or other employment or vocational services are appropriate, a bank of work capacity assessments are performed. • A social worker then follows a case management procedure to administer a needs assessment checklist to determine which services or supports (temporary or ongoing income support or supplementary funding for special needs, assistive technology, personal assistant, social skill training, vocational rehabilitation services, home modification, job counseling, and so on) are appropriate. The case manager assists the individual with applications for relevant supports. • Finally, the case manager or local social worker periodically monitors the person to determine if his or her situation has changed, whether a new assessment should be made, and whether additional services are required or no longer required. Source: Teng et al. (2013). (2) Countries in transition Many countries are transitioning towards modern, of daily living and instrumental activities of daily ICF-centered disability systems. Medium and living, or, increasingly, functioning status in general. high-low resource countries such as Latvia, Czech Romania is within this group. Republic, Slovenia, South Africa, and most Latin There is considerable variety in principles and American countries are either completing or in the developmental stages in this group of countries. process of reforming their disability assessment Many have developed “homegrown” functioning (and often disability policy more broadly) away assessment tools that use ICF terminology and from a purely medical and discretionary approach classification, and often incorporate into the to one that augments medical Baremic instruments process and criteria the ICF conceptualization with information about the applicants’ activities of disability in some manner. These assessment Chapter 1 I 53 tools are rarely empirically tested or validated. There are too few resources to support a complex While some countries (e.g., Latvia and Lithuania) administrative process, and eligibility is decided have algorithms for merging Baremic percentages by a single individual on a discretionary basis with or scores with functioning scores, there is rarely little or no supporting documentation. a scientific basis for these algorithms. As a rule, the medical score dominates the decision. These (4) Romania countries primarily rely on medical professionals alone or other health professionals, rehabilitation Based on this classification, Romania is in the professionals, or social workers. middle group of countries. As will be discussed in later chapters, in Romania, the disability Depending on the stage of reform, some of assessment is carried out by CEPAH and SECPAH these countries (e.g., Lithuania) are attempting teams using legislative criteria, and a collection to merge or rationalize disability assessment for of medical, social, and functioning assessment social protection benefits with active labor policy tools and checklists. The medico-psychosocial and return-to-work programming based on work criteria is a Baremic tool that has been modified capacity assessment. Others are investigating to attempt to link medical diagnostic categories to the possibility of combining disability and needs “whole person” disability and activities of daily assessment into a single agency with policy living and instrumental activities of daily living, development and advocacy roles (e.g., Bulgaria). focusing mainly on vocational capacities. While Although there are various patterns in this group, the children’s disability assessment system has most of these countries are similar in that they have introduced many ICF standards, attempts to align a modest or limited social protection budget, gaps the adults’ disability assessment procedures and in health care coverage, and limited labor activation instrumentation with the ICF have had very limited programming. For this reason, the disability success. The instrumentation is not evidence- assessment process and criteria based primarily on based or psychometrically sound, and the diverse medical professional discretion and scientifically information from various sources has no impact questionable instrumentation may not be viewed on the decision. In the end, the decision is based as particularly problematic or in need of reform. primarily on medical evaluation. In the absence Uniformly, the success rate in these countries tends of quantifiable criteria, the system allows both a to be very high (80–90 percent), which is another predominantly medical evaluation and sometimes reason the system may not raise concerns across the a discretionary decision by a medical professional. population. Like many other countries in this second (3) Medical-based disability assessments group, however, specific reforms can remedy many of the inherent limitations of the process, The third group includes countries that rely solely on criteria, and instrumentation. It is both unrealistic medical-based assessments. This group includes low, and unnecessary to try to achieve the level of a low-medium, and some medium and high-medium country in the first group—available support and resource countries, such as Greece, Saudi Arabia, services do not warrant it. The Romanian disability Russia, Turkey, Azerbaijan, and nearly all African assessment and needs assessment processes can countries. Some countries do not have a disability be modified to be more effective, efficient, and assessment system at all. Also, most countries in administratively sound. The instrumentation can this group rely on a medical professional’s decision, also be supplemented by a proper psychometric based on clinical judgment alone, with or without tool that is quick to use, efficient, and fully aligned a template or Baremic medical expertise table. The with the ICF. In this way, a degree of continuity can system may have historical or ideological roots be maintained with the existing Baremic medical (e.g., in Russia and former Soviet countries, a highly tool. In contrast, the medical assessment scores centralized, discretionary, and often unreviewable could be modified to adequately consider reliable approach to disability assessment predominates). In information about functioning and its impact on the low-resource countries, the issue is more financial. assessment of disability. 54 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 2. Outreach regarding disability in Romania Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, OUTREACH AND DISABILITY DISABILITY PLANS FOR APPEALS AND INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE The first core implementation phase of the delivery This chapter focuses only on the initial outreach chain is outreach,78 understood as “deliberate phase related to the disability assessment system in efforts to reach and inform intended populations Romania, although communications and outreach and vulnerable groups about social protection extend across the entire delivery chain. The programs and delivery systems in ways that they purpose of initial outreach is to build awareness, will comprehend so that they are aware, informed, inform people about the existence of the disability able, and encouraged to engage”.79 Although this certificate and its associated benefit-service package. core phase is crucial for the effectiveness of any The initial outreach is not limited to the provision delivery system, it is often neglected for many social of information but also aims to facilitate the protection programs in many countries.80 understanding of the steps and rules for obtaining 78 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 79 Lindert et al. (eds), World Bank (2020: 61). 80 Idem, p. 6. Chapter 2 I 55 such a certificate, including institutional actors; but also encouraging and ensuring access for all points of contact and how to access them; timing interested groups of the population, children, and place of registration; rights and responsibilities young people, older people, people with different of registrants and eventual beneficiaries; channels types of disabilities, people with different cultural for filing grievances, complaints, and appeals, etc. or linguistic backgrounds, people who have no To this aim, outreach activities should be formal education, poor people, homeless people, carried out based on a carefully prepared strategy, people in detention, people living in remote areas with clear roles and responsibilities, as well as and vulnerable people and families at social risk. protocols and guidance tools to reach target groups. In this phase, poor communication has multiple Initial outreach can be carried out through direct negative effects, but the main risk is that the target interaction and face-to-face communication or with population that is missed, unaware of the program, the help of “active search” tools, with the aim of or fails to understand the program or how to providing information, facilitating understanding, register. 2.1. How do people find out about the disability assessment system? In Romania, there is no official disability-related in informing people of the program and its outreach mechanism based on strategic planning, operational aspects (steps, rules, points of contact, earmarked budget, or network of professional timing and place of registration, and so forth), from agents. The key actors responsible for conducting the first phases of obtaining a disability certificate the initial outreach are DGASPC through SECPAH, to encourage the intended population to engage, at the county/Bucharest district level, and SPAS at apply, and provide their information as inputs to the community level. These actors inform people the intake and registration phase. In the perception at their local or county offices or on websites and of the SECPAH/SECC practitioners, both SPAS and do not use mobile teams or door-to-door activities SECPAH largely fulfill these duties, as the figure for outreach purposes. They play a critical role shown below. Figure 3: Sources of initial information for persons requesting a comprehensive disability evaluation (%) Raise awareness and inform people about the right and ability to apply Inform people about the for a disability certificate delivery processes Internet, social media, mass media Relatives, friens, social network NGOs for PWD, parents/family associations Roma or community mediator School, teachers Physical therapist, speech therapist Psychologist The community nurse The physical medicine doctor and recovery Specialized physician Family doctor DGASPC, SECPAH at the county level SPAS, social workers at the community level 0 10 20 30 40 50 60 70 80 90 100 0 20 40 60 80 100 SECC SECPAH SECC SECPAH Source: Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=201) and children (SECC, N=187), January–February 2021. 56 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM In fact, medical professionals, especially the initial package of information. Then it is the specialized physicians and family doctors, represent person’s decision to apply for a disability certificate. the main actors in raising awareness and informing This kind of procedure was also mentioned as “the people about their right and ability to apply for a best outreach option” by the interviewed persons disability certificate, according to the SECPAH and with disabilities (see also quote 2.1). SECC specialists (see Figure 3). However, there are As focus groups with SECPAH/SECC specialists no nationwide systems for referrals, protocols, rules, showed, “In the last five years there has been an or assigned responsibilities regarding medical staff’s avalanche of people sent by doctors.”81 Nonetheless, duty to conduct the initial outreach for disability. For at the same time, during interviews and focus example, in some countries, specialized physicians groups, all key actors gave examples of communities must complete a special (colored) form for any with no family doctor or with an indifferent one, person diagnosed with a medical condition eligible and of medical staff who did not inform the person for disability status. Once the person receives such even though the diagnostic would have allowed a form, the medical unit provides him/her with them to be classified in a disability category. 2.1 2.2 “I would put the emphasis on clear “Lately, doctors refer a lot of people, regardless of their condition, information, not just on a list of even with a common fracture. They come to us and say that if documents and that is that. A person- the doctor told them, it was necessary, why we tell them that to-person information. ... Specialized they cannot be classified as having a disability. Doctors believe physicians should tell you if you are that if they have a functional problem, someone needs to take entitled to a disability certificate. And in care of them, that social workers must handle their cases. In most every doctor’s office, general physicians cases, doctors, rather than social workers, refer them to us [the should display patient rights on a board comprehensive assessment service]. […] or should have a brochure that patients Yes, and then, in the hospital, every social case is referred directly could buy, if not offered for free.” to the social worker, doctors easily prepare the medical reports for (Interview with person with disabilities, people that represent social cases with or without the right to be woman, 20 years old) classified as person with disabilities.” (Focus group, SECPAH) Regarding SPAS, the Social Inspection82 shows for a disability certificate as a strategy to reduce the that over 75 percent of the (310) audited communities number of beneficiaries for other social assistance do not have a social diagnosis or early identification, benefits (such as guaranteed minimum income), early intervention, and preventive services, and other SPAS not only fail to inform but also refuse do not identify vulnerable groups (including to do the mandatory social inquiry and deliberately people with disabilities) or their specific needs.83 discourage people from applying for a disability Nonetheless, there are significant differences across certificate, as “the mayor does not want handicap communities. While some SPAS guide, encourage, in his commune.”84 and assist people (especially the elderly) to apply 81 Focus group SECPAH. 82 The Social Inspection is a structure within the National Agency for Payments and Social Inspection, respectively within the County Agencies for Payments and Social Inspection. 83 ANPIS (2019: 7). 84 Focus group SECPAH. Chapter 2 I 57 2.3 2.4 “I found out about this story with the disability at the Mayoralty “But there are also cases of discrimination. because I did not have a job anymore, and, they said that I was Just to give you an example, a recent sick after all. There was an employee who was not a doctor and case, a person with an amputated leg. who told me the following: that I was being given the chance to That person’s daughter is struggling to be classified as person with disabilities. And indeed in 2008–2009 prepare the file, and those [the SPAS] in I got my disability certificate, and I had a disability certificate for the respective person’s locality of domicile 1 year. Accentuated disability certificate, as the one I have now. I refuse to conduct the survey, the mayor of had it for 1 year after which I told myself that it sounded bad to the community said to the daughter: ‘I do be disabled and I gave it up and I also tried to get the Guaranteed not want a person with disabilities in the Minimum Income (GMI) in the same way, through the Mayoralty, commune.’ The daughter filed a complaint and, I do not know, they did not really agree to this. So, they said: with the Prefect’s Office and with us and ‘You had a disability certificate, you should have continued with it with the Police. And we are waiting to and that is it.’ And then I was without income for about 4–5 years see how things will unfold.” (Focus group, and finally my brother helped me a bit.” (Interview with person SECPAH) with disabilities, women) Within communities, other types of community protocols or are assigned specific duties pertaining workers have an active outreach role, besides SPAS. to raising awareness or informing people about the First, there is the network of community nurses disability assessment. managed by the County Public Health Directorates The NGOs of persons with disabilities, together (deconcentrated institutions of the Ministry of with the Internet and social media, also play a Health). This network is unevenly distributed in significant role, although for fewer people, say the the territory, and most rural communities lack a SECPAH and SECC practitioners (see Figure 3). community nurse. Second, teachers and schools Also, nearly all interviewed NGO representatives exist in all localities, but are rarely involved in (17 out of 20) highlighted their involvement in the outreach regarding disability, and only for children. initial outreach by providing information services Third, especially for Roma communities, there are for adults with health problems who might or Roma experts or social mediators who facilitate the do require evaluation for obtaining a disability population’s access to information and mediate certificate, within all their subsidiaries/branches, the relationship with institutions. However, both in urban and rural areas. In the context of Roma experts are rare and unevenly distributed the COVID-19 pandemic, most of them developed across the country. Fourth, there are other types online services, such as Voices for Hands (using of professionals, such as the social workers from videoconference). Although the demand for this hospitals or jails (nearly all in urban areas), type of support is very high, the interviewed NGO community facilitators, and informal leaders who representatives note that they often do not have were mentioned in interviews and focus groups either the necessary funds, or specialized human as participating in outreach to various groups. resources to carry out outreach work. However, none of these specialists benefit from 2.5 “A friend, who is also a person with disabilities but who has legal experience in this field, informed me about how to obtain it, about the steps and formalities for obtaining a disability certificate. I had a general idea about the steps but, more specifically, I learned about each step as I went from one stage to another. I put together information from several sources: the DGASPC, the Internet and other persons with disabilities.” (Interview with person with disabilities, woman, 36 years old) 58 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Nevertheless, most of the interviewed persons Then they go to a doctor or a social assistance office with disabilities, as well as the NGO representatives (either SPAS or DGASPC) and learn more. For help and a large portion of the practitioners, consider that completing and understanding the information for the majority, peer-to-peer outreach represents or for solving sensitive issues, they ask trusted, the first contact with the disability system. Most knowledgeable people in their community (such people find out “by chance” from a relative, friend, as teachers or mediators), use the Internet or social co-worker, or neighbor that a certain medical media, if they can, or request assistance from an condition could be associated with disability status. NGO, if available. 2.2. Information and communication practices regarding the disability assessment system Once persons with disabilities find out about the on the DGASPC websites. Eight of the 36 studied right to apply for a disability certificate, they need counties that participated in the research provide to be able to (i) learn the procedure for obtaining full information on their DGASPC site in an easy- the certificate and who to contact; (ii) understand to-use format. In contrast, 5 counties do not provide how and where to register, and navigate the process any of the necessary information. Claimants can for doing so; (iii) understand and be informed usually find out how to access SECPAH, what the of decisions regarding their eligibility status, application file contains, and how it should be enrollment, and benefit-service package (if enrolled); prepared, as well as how and where the application (iv) participate in onboarding activities (if enrolled); and file are submitted. In less than half of the (v) interact with payment or service providers and country’s counties, claimants can find out from the receive timely delivery of benefits and quality first try what benefits and services are available in services; and (vi) update their information, be connection with the certificate. And in less than a informed of any changes to their status85 (including third of the counties, claimants can understand how for noncompliance of conditionalities), and file the classification by degree and type of disability grievances or appeals.86 is done, how decisions regarding their eligibility Regarding this recommended set of information, status are made, and how to file grievances or Table 3 shows that the information available for appeals. claimants of a disability certificate is incomplete Table 3: Information on disability available on DGASPC websites Information about … No Yes, some Yes, full information information a. What the file contains and how should it be prepared 1 10 25 b. How and where the application and file are submitted 1 10 25 c. How to access SECPAH 0 7 29 d. What the comprehensive assessment consists of, and how this is done 9 17 10 e. How the degree and type of disability are established 13 13 10 f. Which are the related benefits and services 7 14 15 g. How to challenge the disability certificate, including how and where this can 14 11 11 be challenged, and how to apply for and obtain legal assistance None of the above 5 All of the above 8 Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest municipality, January-February 2021. 85 In the context of the current disability assessment report, we are referring to any changes that may affect the provision of benefits and services. 86 Lindert et al. (eds.), World Bank (2020: 22). Chapter 2 I 59 The SPAS and the NGOs only partially fill the either do not know or believe that most NGOs information gap. Regarding available information do not provide any of the necessary information about the disability assessment, the project surveyed (see Figure 3 in Section 2.1). However, the NGOs the opinions of practitioners working in SECPAH representatives declared in interviews that they and SECC87 and the results shown in Annex 4. place critical importance on outreach and have Table 1 indicate that only some municipalities implemented a series of projects in this area. Besides (SPAS) provide information about the disability statements, they provided materials and examples assessment, and most of these follow the same proving a rather strategic approach to information, incomplete pattern as the DGASPC websites. education, and communication with the applicants Also, only a small share of municipalities provide to, and beneficiaries of a disability certificate. Also, complete information, while some do not offer any the interviewed persons with disabilities mentioned information. that NGOs provided support, information and Regarding information provided by the NGOs, advice when they decided to apply for a disability the majority of SECPAH and SECC specialists certificate. “We have, within a larger social assistance Help Family department, this component of 2.6 informing and assisting people with the preparation and submission of the file when requested. We did not refuse to provide support to any person who asked for our help, not only to our beneficiaries. If I get a phone call from the mother of an 18-year-old child diagnosed with infantile autism asking for my support, I will not send her to the DGASPC, I will make a phone call and get some information and keep in touch with her. We provide information and emotional support.” (Interview with an NGO representative, national association) Current regulations require the relevant applicants, and beneficiaries is a good indicator of institutions to only post the standard forms on how well organized the initial outreach phase is. their sites.88 The standard forms refer either to Out of the 36 studied SECPAH, 26 reported having the application for a comprehensive evaluation an approved outreach procedure. At the same (to be submitted to the SECPAH/SECC) or the time, in line with the current legislation, claimants application for social inquiry (to be submitted to who apply for a disability certificate for the first the SPAS). In this regard, while all DGASPCs report time “shall receive, free of charge, information complying with this regulation, less than half of the concerning social risks and social protection rights selected SPAS do.89 The share of SPAS that have the from which they may benefit, and also, as the case standard application for social inquiry posted on may be, any counseling required to surmount any the municipality site is under 60 percent, a higher difficult situations.”90 The SPAS are in charge of share (72 percent) recorded only among the large providing such information. Out of the 71 SPAS cities (see Annex 4. Table 2). in the sample, less than a quarter reported having Communication is intrinsic to outreach, as a specific procedure (or paragraph/section in the it facilitates interactions and ensures all actors general procedure) referring to the information on understand all processes along the delivery chain. social risks and the rights of persons with disabilities; Therefore, the existence of a specific procedure a larger share (50 percent) was registered only for concerning communication with claimants, larger cities (Annex 4. Table 3). 87 Opinion survey Q2B: Practices and experiences of the practitioners working in SECPAH/SECC from 39 counties and the 6 districts of Bucharest, January-February 2021. 88 GD no. 430/2008, Art. 6, for adults with disabilities; Order no. 1985/1305/5805/2016, for children with disabilities. 89 The question referred to two standardized applications for comprehensive assessment, for adults (GD no. 430/2008, Art. 6) and for children (Joint Order no 1985/1305/5805/2016). The results were similar for the two types of forms: 42 percent of SPAS in the sample reported to have posted the application for adults and 45 percent for the one for children. 90 Art. 47, para. 4, of Social Assistance Law no. 292/2011. 60 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The Service for Comprehensive Assessment for Adults with Disabilities provides information to all adults with disabilities, families of adults with disabilities, legal representatives, personal assistants, professional personal assistants, nongovernmental organizations whose members are adults with disabilities, and any person representing adults with disabilities regarding the activity of the service, the manner of obtaining a disability certificate, and the type of documents required for submitting a file that will be the basis for the disability assessment, as provided for by Art. 6 (4) of GD no. 430 4/16/2008 approving the methodology regarding the organization and functioning of the committee for assessing adults with disabilities, as subsequently amended and supplemented, and by Art. 7 of Order no. 2298/2012 approving the framework procedure for the assessment of adults in order to be Example of classified as having a certain degree of disability. It also receives, highlights, and a SECPAH settles the standard requests for comprehensive assessment. communication An objective, clear, complete, timely, easy to understand information about the procedure stages of the comprehensive assessment procedure, as well as the preparation of a file, is always underscored by medical documents, submitted by the applicant. These should show the onset of the disease, the present condition, as well as other important aspects regarding the person’s medical condition. The communication system must be flexible and fast. The information provided within the service is also posted on the entity’s website, or may also be transmitted, in the case of electronic requests, by email. Note: Response received as communication procedure within a questionnaire Q2A, which is part of the general procedure of that SECPAH. However, among both the SECPAH and SPAS, with Handicap;” while the commission is the only a few of those reporting the existence of a “Evaluation Commission for the Adult Persons communication procedure were also able to attach with Handicap.” it to the survey response package.91 Furthermore, most of the communication procedures given to the research team are rather general statements, as illustrated in Box 4. In other cases, the 2.7 communication procedure refers to complying with Order no. 2298/2012,92 which includes just one provision related to communication (requesting that SECPAH communicate to the claimants the date and location for the assessment interview). This last point of this section refers to the core “I lost a breast. The handicap entitles me to receive message of communication regarding disability. that money [the disability benefits]. The state must This report uses the term “disability,” but in compensate as the breast will never grow back. I Romania, all institutions and documents involved will not recuperate it.” (Interview with person with in the disability assessment use the term “handicap” disabilities, woman, 61 years old) which is established in the Romanian Constitution (Art. 50) and included in Law no. 448/2006 on the protection and promotion of the rights of persons More generally, both in legal terms and casual with disabilities. Thus, translated verbatim, the language, people with disabilities are “persons disability certificate is called the “certificate of with handicap” because “only the handicap classification in degree and type of handicap;” confers entitlements, while disability is just a the assessment services are called “Services of term use in the academic or strategic papers, Comprehensive assessment for the Adult Persons without power in courts or institutions”.93 This 91 Nine out of 16 SPAS, and 9 out of 26 SECPAH (see Annex 4. Table 3). 92 Order no. 2298/2012, framework procedure for the assessment of adults for the classification in a degree and type of disability. ANDPDCA told the research team that this regulation is currently under review. 93 Interview with ANDPDCA representatives. For comparison, for children, the ICF has been partially incorporated into the Chapter 2 I 61 is an important element of the general social and “to be compensated by the state,” as illustrated institutional environment. Although the process of in quote 2.7. Therefore, to change the paradigm modernizing the legislation started several years from a medical to a holistic (ICF) approach, ago, and the medico-psychosocial assessment information, education, and communication with criteria were introduced in 2007, the language still the current beneficiaries as well as with the general reflects a general way of thinking about disability population should go hand-in-hand with training as a medical problem, deficiency, or impairment. practitioners. Otherwise, misunderstanding and Even interviews with persons with disabilities misconception can cause mistrust among actors, revealed that underlying the use of “handicap” is impede implementation, waste resources, generate the belief that the certificate shows the existence inefficiencies, reduce effectiveness, and lead to the of a medical condition that entitles the individual reform’s failure. 2.3. Adapting information and communication for “hard to reach” populations The persons with disabilities population is diverse, populations may not be aware of social program and includes women, men, children, youth, benefits they could be eligible to receive. Evidence elderly, people from different ethnic groups, shows that in the absence of a well-thought through people living in large cities and those in remote outreach strategy, social protection programs may rural areas, people living with family and those run the risk of exacerbating exclusion errors for lack in residential institutions, patients in psychiatric of information and skepticism that the programs facilities or those in detention, homeless people may not yield immediate or longer-term benefits, without a fixed address, and people in families particularly for people living in remote and isolated with varied socioeconomic status and conditions. locations. A proactive outreach effort can help to These groups may require particular adaptations manage expectations, minimize grievances, and or accommodations to ensure they are reached and develop better mutual understanding to avoid the served. Active outreach is critical for promoting risk of negative spiral, program failure, external potential inclusion of all these groups.94 Vulnerable manipulation, loss of credibility, and politicization. Figure 4: Adaptation for persons with visual impairment of the information found on the DGASPC websites g. How to challenge the disability certificate, including how and where this can be challenged, and how to apply for and obtain legal assistance f. Which are the related benefits and services e. How the degree and type of disability are established d. What does the comprehensive assessment consist of, and how is this done c. How to access SECPAH b. How and where the application and file are submitted a. What does the file contain and how should it be prepared 0 9 18 27 36 No information available Some or full information available but not adapted for people with visual imparment Some or full information available also adapted for people with visual imparment Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. disability assessment, and the institutional, legal, and common descriptions predominantly use “children with disabilities” (although, there still are cases in which this is mandatorily accompanied by “children classified in a degree of handicap”). 94 Lindert et al. (eds.), World Bank (2020: 63). 62 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The information provided by DGASPC no adaptations at all. The majority of the others (SECPAH) online is only partially adapted for the benefit from only one type of accessibility tool. The specific access barriers by type of disability. In the most common accessibility tools among SPASs are: context of movement restrictions (such as those information available in simplified language (easy- imposed during the COVID-19 pandemic), the to-read-and-understand) and a designated person lack of or insufficient virtual access to information to assist people with disabilities (who knows how has become more important than ever. Table 3 to speak in plain language, easily understood by shows the available information on the DGASPC people with intellectual disabilities), along with websites. Figure 4 offers additional information and other adaptations that vary from one locality to shows that less than one in every three counties in another. The SPAS are better endowed in larger Romania provides accessible information for visual cities, whereas those from rural, underdeveloped, impairment concerning the disability assessment. and remote localities do not provide accessible Furthermore, an analysis of the DGASPC websites information and communication for persons with done by members of the research team who are disabilities. persons with disability showed that: (i) out of the The situation is better among the SECPAH and 22 selected websites, only 11 have an accessibility SECC (within DGASPC), as presented in Table 4. tool; (ii) the accessibility tool menu varies across All have developed at least one adaptation, but counties; (iii) blind persons need assistance to the majority benefit from 4-5 types of accessibility navigate the websites, as screen-reading software is tools. The most common include easy-to-read not available; (iv) on many sites, the standardized information, staff appointed to assist persons with forms and other documents can be accessed only intellectual disabilities, sign language-certified after several clicks, presuming that the user is interpreters, protocols with NGOs, and other already well documented and knows the institutions adaptations. Most often, these “other adaptations” (and their acronyms), the legislation, the legal name refer to a screen that offers information (audio, of the document, and so forth; (v) some of the video, sign language, transcriptions) for all pop-up lists include long lists of documents from categories of persons with disabilities; a website various areas of social protection, which requires a equipped with accessibility tools; a public e-mail preliminary search to identify the information the address; flyers differentiated by type of disability. user is looking for; and (vi) on many sites, the menu And sometimes “all our specialists know how to of public interest information includes categories of handle such situations on their own”97 is reported uploaded documents that are difficult to access or under the category “other adaptations available cannot be opened. to facilitate access to information for people with Still, most people with disabilities do not use different types of disabilities”. the Internet to access institutions and services Therefore, inclusive outreach is available only intended for the public. For instance, a recent study in some counties, and mainly in the larger cities. A shows that most persons with disabilities did not deaf individual living in Romania who applies for use the Internet in the previous month: 50 percent a disability certificate has a chance of being assisted of persons with some limitations and 64 percent of by a sign language interpreter in just 1 in every 10 those with severe limitations.95 SPAS offices, and only in about half of the country’s Accessibility of offline communication and DGASPC offices. For people using a wheelchair, information is also limited at both county and local physical access is also very limited, as most of these level, although it falls under the responsibility offices lack a ramp, do not have special parking, or of public authorities.96 Table 4 shows that less do not provide wheelchair-adapted toilets.98 Also, than half of the studied SPAS provide accessible as we have shown above, offline communication information and communication for different types is rarely adapted to the needs of the people with of disabilities. Furthermore, 54 percent of them have visual impairment. 95 Grigoraș et al. (coord.), World Bank (2020: 12). 96 Law no. 448/2006, Art. 61-64. 97 Excerpts from questionnaire Q2A. 98 Grigoraș et al. (coord.), World Bank (2020: 52). Chapter 2 I 63 Table 4: Accessibility of offline communication I worked as a consultant for both public institutions 2.8 and private operators. I tell you all this to contextualize, URBAN RURAL COUNTY to underline that I am not a beginner who cannot Accessibility of the offline Larger Small Communes Communes Communes Total SECPAH find his way among all those buttons. And yet, I failed communication cities cities type 1 type 2 type 3 sample (within to extract the information that I needed from the of SPAS DGASPC) institution’s website, https://www.das-voluntari.ro/. Number of cases, of which equipped with... 18 10 12 15 16 71 36 Although there is a ‘Required Documents’ section on a. Braille language signs placed in an easily 0 0 1 0 1 2 8 the website, I have not been able to access it in any identifiable and accessible place way, no matter the array of technical means that I am b. Icons easy to understand and placed at 3 0 2 1 0 6 16 “Recently I needed to get a disability certificate issued familiar with. I had to call their number, have someone the right height for a family member. I am completely blind. I rely answer me, someone who sent me to the unavailable heavily on remote communication, because getting c. Adequate electronic notice boards 1 1 1 1 0 4 5 website. It was only after I explained the problem to the institution’s office is far too complicated for d. Audio files, Braille printed texts, texts 2 0 1 0 0 3 11 that I was given the necessary information. And me. Furthermore, this was a matter of obtaining written in a simplified language situations like this are not isolated. The accessibility some basic information, i.e., I needed to know what e. Sign language certified interpreters 5 0 1 1 0 7 19 measures taken by certain institutions are, most often, documentation was required for the submission of f. Person appointed to assist disabled 7 0 3 4 0 14 19 inappropriate. The subcontracted companies often do the file in order to obtain the disability certificate. persons, who can speak a plain language not have a clue about the correct implementation of Before moving on to the access barriers, I would like that is easily understandable by persons the accessibility standards. Until we have a legislative to highlight a few extremely important aspects. I have with intellectual disabilities and educational framework for training specialists and been using access technologies for over 20 years. g. Information available in a simplified 9 1 4 5 0 19 31 recognizing them as such, officially, the only solution I am using computers since I was a kid, so I am an language (easy-to-read-and-understand) remains to engage persons with disabilities and their advanced user. Not only have I been passionate about h. Any other possible adaptations to 7 3 4 5 1 20 25 representative organizations in building an accessibility technology since childhood, but I also work in the facilitate access to information for persons plan and in the audit process.” (Interview with a person field. I am an expert in accessibility, and, over the years, with different types of impairments with disabilities, man) i. Other procedures approved by the 2 0 2 2 1 7 19 DGASPC for communication with disabled Besides type of disability, adaptations for Adaptations for all other groups - young and persons (e.g., protocols with NGOs) vulnerable groups systematically followed in elderly, people in detention, illiterate, people living None of the above 4 7 5 7 15 38 0 this report are also very limited. Figure 5 shows in rural areas (including in isolated areas), homeless At least one of the above 14 3 7 8 1 33 36 that SECPAH has adapted information and people, and those in the care of social institutions communication in more counties (19) only for (managed by DGASPC) - are available in only a few Sources: SPAS survey with responses from 26 counties, January-February 2021. Institutional survey Q2A: Facts and indicators regarding the activity of the immobilized persons, as this situation requires counties. services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. that assessment take place at the claimant’s home. Notes: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all types; communes type 1 = communes developed and close to the county seat; communes type 2 = other communes (typical rural localities); communes type 3 = communes underdeveloped and remote. Figure 5: Number of SECPAH that adapted their communication procedures regarding information about assessment to vulnerable groups Are there specific procedures or sections/chapters of the 2 3 8 2 4 3 4 1 19 4 general procedure regarding informing about assessment the following groups ...? Young persons The elderly (aged 65 Persons in social Persons hospitalized Homeless Persons in Persons under Persons with a low level Immobilized Persons living in aged 18-26 or more) institutions for adults in psychiatric persons prisons guardianship/ of education (maximum persons the rural area (centers, sheltered houses) facilities curatorship 8 grades) Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. 64 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 2 I 65 WEB ACCESIBILITY FOR THE HEARING IMPAIRED Information accessibility for the deaf and persons with hearing loss is achieved mainly through written messages and sign language. A web page that is accessible to the hearing impaired should include the following Hopes for website accessibility, expressed by minimum options: persons with disabilities and organizations that • All the information should be published in written format—the page represent them should not contain any audio-only messages. • Published materials (communications, messages, rules, etc.) should be An accessible website that can be used by (almost) any person, regardless of their personal limitations, interpreted in sign language, especially for deaf community members for whom sign language is their native language. including sensory, visual, auditory, mobility, or cognitive impairments..99 • Materials interpreted in sign language should also be subtitled, since not all persons with hearing loss know sign language, and instead use writing WEB ACCESIBILITY FOR THE BLIND and reading to communicate with hearing persons. A blind person can use an electronic device such as tablet, smartphone, or laptop via a screen reader or If the institution/organization provides sign language interpretation services a Braille screen. Screen readers can read any text, regardless of the language or punctuation, but they at their offices, this information should be featured on the website. cannot read images. A blind person using this type of software would thus be unable to read captions on images, texts scanned as images, or non OCR (optical character recognition) processed PDFs. A web page accessible to the blind should include the following minimum options: ACCESSIBILITY FOR PEOPLE WITH INTELLECTUAL • A description of the image, which is not visible, but can be interpreted by the screen reader to convey DISABILITIES the content of the image to the user. As for people with intellectual disabilities, the information needs to be adapted in terms of simplification and attention to presentation, • Text blocks that include a header or ARIA code.99 The header is a title coded differently from the rest whether it is printed or presented electronically. The use of easy-to- of the text; the headers help the blind person easily navigate from one section to another using a read language is crucial because it helps people with intellectual keyboard shortcut—usually the letter H. Headers can be used to navigate to the menu, different disabilities learn new things, be better informed, know their rights, sections of the article/page, the Help section, etc. make choices, and, last but not least, feel they are part of the • CAPTCHA codes to include an audio version. A Completely Automated Public Turing test to tell Romanian community and society. When developing easy-to-read Computers and Humans Apart (CAPTCHA) code is used to prevent robots/automatic services from material, we consider language, content and illustrations, design, filling out forms. By their function, CAPTCHA codes are inaccessible to screen readers. Alternative audio and layout. There are a few basic rules to keep in mind when solutions must be used for these types of codes, e.g., Google’s reCAPTCHA. creating a user-friendly text, namely: • Limited use of accordion menus and interactive pages. Menus that drop down to reveal other • The headline should be simple and easy to read, preferably submenus when the user places the cursor on a link are almost impossible to navigate by users of bold-faced. accessibility technologies. • As for the document, except the first page, it should be numbered on the bottom right-hand corner of each page. WEB ACCESIBILITY FOR THE VISUALLY IMPAIRED The font used should be that recommended by the European There is much diversity in visual impairments, making it necessary to adapt federations of people with intellectual disabilities, i.e., Arial, size accessibility solutions to each individual impairment. For low-vision persons, there 14 (minimum). is no blanket solution, unlike for blind persons. However, an international good • The words used should be familiar and straightforward, practice guide lists the following minimum requirements for a web page to be contained in short sentences. Word breaks should be avoided, accessible to low-vision persons: so part of the word is on one line and the rest on the following • It must include the option to increase/decrease font size and/or contrast. line. • It must include several color schemes and/or enable toggling background and • Sentences begin with a hyphen, are short and contain a text color (e.g., black on white/white on black, black on yellow, etc.). positive message if possible. They must be complemented by • It must use legible fonts. appropriate images (drawings, symbols, pictograms, pictures, • It must be responsive, i.e., maintain its appearance regardless of the size of the etc.) to make the text/message easier to understand. screen or the magnification software a low-vision person might use. • The use of concrete examples to further explain the message is encouraged. 99 ARIA - Accessible Rich Internet Applications is a set of attributes that define ways to make web content and web applications (especially those developed with JavaScript) more accessible to people with disabilities. 66 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 2 I 67 Conclusions of Chapter 2 On-demand systems, such as the disability assessment, depend on people being informed enough to take the initiative to apply. If outreach efforts are inadequate, target populations or vulnerable groups may lack the awareness or ability to seek aid and may be missed. The analysis presented in this chapter indicates that 1 regarding the disability assessment, more efforts are needed to meet the UNCRPD (Art. 9) requirement on ensuring accessibility to information and communication to enable all persons with disabilities to fully enjoy all human rights and fundamental freedoms.100 The existing interface between people and institutions is a “weak link” of the disability system. The information provided is incomplete and poorly adapted, 2 both to the various types of disabilities and to vulnerable groups facing social risks. The main communication gaps at this phase risk a target population that is missed, unaware of the program, or that fails to understand what the program offers or how to register. The persistent core message of ”handicap” needs to be changed to ”disability” to support reforms that shift the system from a medical to a holistic approach. This is not possible without legislative change. But equally, sustained information and 3 education and communication campaigns are needed to change the perception of current beneficiaries, as well as the general perception of disability as a “handicap” and of the disability certificate as compensation for medical conditions. One method that considerably improves outreach, used in some countries, is to introduce a standardized form (such as a “green form”) that must be completed by any specialized physician once he/she establishes a medical diagnosis that is mentioned in the disability classification criteria. For example, this could be done by establishing a list of disease codes to be jointly approved by the Ministry of Health and the Ministry of Labor and Social Protection. In addition, the “green form” could 4 be accompanied by a brochure with essential information that the health facility would have to hand out to people who receive the form completed by the physician. The introduction of such a measure would not only have the potential to improve the initial information of all categories of the population, but would also increase access to disability assessment while restricting the opportunities to obtain/provide medical documents prone to fraud regarding the accuracy of the information they contain. The ANDPDCA website should include a dedicated page, updated permanently, that includes complete and fully accessible information on the disability assessment 5 for children and adults, to fill the gaps from the DGASPC and SPAS websites and to ensure all citizens have equitable access to information. 100 Preamble to the Convention on the Rights of Persons with Disabilities (UNCRPD, paragraph 22). 68 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 3. Intake and registration for disability certificate101 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE Intake and registration represent the second phase of In Romania’s disability assessment system, intake the delivery chain. For any social protection system, comprises what applicants102 must do to obtain the objective of this phase is to efficiently register medical documents, the social inquiry done by the target population and the vulnerable groups, SPAS, and the other documents needed to compile and record their information accurately. Following the application file (see Flowchart 3). These steps are outreach efforts (discussed in the previous chapter), described in the following sections, which consider the inputs to intake and registration involve the more detailed aspects of implementation, individuals who apply for assistance, engage with linkages with other stages, various operating SPAS/SECPAH/CEPAH (for adults), and provide modes developed at the local and county levels, information and documentation. Registration and multiple stakeholders’ opinions and beliefs. consists of recording and verifying that information. 101 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 102 At this stage of the delivery chain, we refer to people as applicants since they have not been issued a disability certificate (the first one or a new one). Chapter 3 I 69 3.1. Intake and registration: An overview Information is a core input and output of intake processes: recording, transforming, and using that and registration. Applicants gather information information and helping to automate the processes from various institutions, which is recorded and themselves. In many countries, information verified by SPAS and subsequently by SECPAH, reported by applicants for a disability certificate and then used to support the disability assessment is complemented by additional data from other done by SECPAH (see Chapter 4). Once the administrative systems, such as social registries. In evaluation is completed, the entire information Romania, the disability assessment system relies package is sent to the CEPAH, which decides solely on the information collected by the applicants on the degree of deficiency. Thus, information during the intake phase, and sometimes also during systems play an important role in supporting those the disability assessment phase. Flowchart 3: The main steps of the intake and registration phase for application for disability assessment Obtaining the medical Obtaining the social inquiry and compiling the Register for disability documents application file assessment at SECPAH Clinical psychologist Route 1: The applican received the file and Home go and register to SECPAH on his/ Family SPAS visits Social her own doctor Inquiry Registration SPAS sends the file Application SECPAH file SECPAH send back Specialized Documents physician Fiscal Other the appointment Assistive Agency institutions technology Route 2: SPAS informs the applican about the appointment and he/she goes Specialized to the assessment interview with physician SECPAH To correct possible malfunctions and increase According to the current regulations, once the effectiveness, any social protection delivery system medical and psychological documents are obtained, must collect and maintain information on all a claimant should apply to SPAS for a social inquiry. applicants, not just those who eventually become The SPAS ask claimants to provide a series of other beneficiaries. Regarding Romania’s disability documents, including a copy of their identity papers, assessment process, neither SPAS nor SECPAH documents proving their employment status and keep records on people who start the process but do income, data about housing, and so on. When all not complete it; i.e., people who apply for a social requested documents are gathered, the SPAS social inquiry and give up before they get it, cases in which workers conduct the mandatory social inquiry. Once SPAS refuses to carry it out, for various reasons, the social inquiry is completed, the SPAS checks people who get the social inquiry but abandon the again for the existence of all required documents, process while applying to SECPAH, or people who and the application file can be considered final. complete the application for assessment at SECPAH Then, SPAS refers the claimant to SECPAH, but give up before the assessment is completed or where he/she should fill out an application for SECPAH does not register them, for example, on the disability assessment and register the file with all grounds of an incomplete application file. However, the documents. In exchange, the claimant receives neither institution monitors the phenomenon of an appointment for the assessment interview. This dropouts or refusal to register. Consequently, the is the most common sequence of events during data presented in this chapter, which also refer to the intake and registration phase. Some variations people who drop out, are only estimates provided within the process are presented in the next as responses to the institutional surveys Q1_SPAS sections. Here, we present only the overall statistics and Q2A_SECPAH and not solid data from registers corresponding to the previously mentioned steps to or administrative databases. indicate the in- and out-flows of claimants from one step to another. 70 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM In Romania, no data are available about the period (month or year). In other words, it is not number of people who were diagnosed by a possible to estimate, not even roughly, the extent specialized physician as suffering from a medical of the drop-out/refusal phenomenon during the condition connected to the disability criteria, or the process of obtaining medical documents. It is not number of people who asked/received a medical possible to know the population making efforts to letter from their family doctors, or the number of obtain medical documents and the corresponding people who sought to obtain medical documents success/failure rates for this first step. to apply for a disability certificate, for a certain Figure 6: Overall statistics regarding the monthly in- and out-flows (number of applications submitted and accepted or rejected/not accepted) by the intake and registration steps (number of persons) At the local level 490 At the county level SPAS SECPAH 421 80 74 23 20 20 15 20 15 Rural Small urban Large urban Average number of applications Average number of for disability assessment per applications for disability Average number of applications for social inquiry per county, in a typical month assessment per county, in locality, in November 2020 (November 2019) November 2020 Registered Rejected applications Average number of social inquiries carried out applications for people applying for a disability certificate per locality, in November 2020 Source: SPAS survey with valid answers from 57 SPAS, located in rural (N=33), small urban (N=8), and larger cities (N=16) from 26 counties, January- February 2021. Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties with valid answers, January-February 2021. Notes: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all three types included in the sample. Yet, the research underpinning this report allows stable residence within the territorial-administrative an estimation of the drop-out/refusal phenomenon unit, as declared within the Q1_SPAS questionnaire. related to the next steps of intake and registration, In extreme cases, as shown in interviews, refusals namely obtaining the social inquiry from SPAS are based on the mayor’s “no handicap in my and registering the evaluation application with locality” policy. Claimants’ reasons for dropping SECPAH. Figure 6 shows the average number of out are much more diverse; some are related to the people per type of locality that apply for a social difficulty of the process, while others are linked to inquiry at the SPAS, and the number of social stigma and discrimination against beneficiaries of a inquiries carried out in response to those requests disability certificate (on the part of employers, but in a month. Data indicate that in both urban and also the general population). rural areas, in a month, there are about 6–8 persons At the county level, on average per month, about per locality, on average, who initiate the process 15-20 applications for disability assessment are but do not benefit from a social inquiry. This is due rejected by SECPAH/DGASPCs, mainly because to both rejections on the part of SPAS and dropout they are not accompanied by the corresponding on the part of claimants. The most common reason complete file (see Section 3.4.2). These estimates are for refusing to conduct a social inquiry is a lack of only indicative as there are significant discrepancies identity papers (or updated ones), or the lack of a both among SPAS offices from different localities Chapter 3 I 71 and across counties. Among the studied SPAS, the November 2020 extends from a low 175 admitted numbers of applications for social inquires, and applications to a high 700, while the number of the carried out social inquiries respectively, vary rejected applications is between zero and 70.103 This from a minimum of 1 and a maximum of 140, in is in line with the large disparities in the number of rural areas, and between 10 and 240, in larger cities. people with disabilities between counties, as shown Also, across the SECPAH offices, the variation for in Section 1.3. “There are many situations in which the persons in question give up, because they find 3.1 it more difficult to undergo these medical procedures and they do not really know what amount they will get. There were situations in which one of the sons submitted the file and the other brother gave up. Or they do not come to us because they do not know that they can also receive a disability pension, and after we informed them, many went to get it as well. […] We had 3-4 cases where people had been having a certificate for a long time and, in 2018, when the certificates were reprinted, they asked for their cancelation because they had gotten married in the meantime and did not want their partners to know about this. Others wanted to go to work or, in other situations, wanted to become foster parents and did not want this to be known. or the daughter asked for cancelation.” (Focus group, SECPAH) 3.2. Obtaining the medical documents According to GD no. 430/2008 (Art. 6), the accessibility of specialized health services. The application file for disability assessment for adults second involves fraud suspicions and how the must contain the following medical documents: (i) suspected cases are tackled. The third concerns a report on the current medical situation, prepared medical professionals’ limited knowledge of the by a specialist physician;104 (ii) a standard medical disability criteria. This section delves deeper into letter from the family doctor, only in the case of the these three problems. first disability assessment (during lifetime); (iii) Regarding obtaining medical documents, the copies of hospital discharge tickets, if applicable; first problem involves the financial and geographical and (iv) paraclinical investigations requested accessibility of the specialized health services. On by SECPAH.105 Also, a medical report from a the one hand, applicants who request disability clinical psychologist is required for some medical assessment shall be exempt from paying any fees conditions. SPAS checks if the medical documents to obtain the medical and psychological documents are included in the file. Then a SECPAH/DGASPC required to prepare the application file, based on representative checks the entire package of medical the allocations from the National Health Insurance documents at registration, while subsequently, Fund.106 On the other hand, under the framework the SECPAH specialists use them in the disability contract concluded by the National House of Health comprehensive assessment phase, when they may Insurance, the documents issued to substantiate the request additional paraclinical investigations or formal disability assessment are excluded from the medical reports as needed. exemption.107 However, a person who cannot afford There are three main problems associated with to pay for the medical examination might wait obtaining medical and psychological documents. several months for a free medical investigation, The first involves the financial and geographical depending on the available ceiling for settlements. 103 The differences for November 2019 (or a typical month) were even higher. The admitted applications varied between 190 and 1,043, while the number of rejected ones was between 0 and 100. 104 No express requirements regarding the medical specialty is provided by the law. 105 For children, a similar package of medical documents is requested, namely A5 medical certificate from a specialist physician and summary medical record from the family doctor only in the case of the first presentation to SECPAH. 106 Art. 10(2) of Law no. 448/2006, as updated under Item 3, single article of Law no. 145 of July 22, 2020. 107 Art. 205, para. 1(i), in the Annex to GD no. 140/2018. 72 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Table 5: Number of SPAS/SECPAH that collect information about applicants’ obligation to pay for medical documents ADULTS CHILDREN SPAS SECPAH SPAS SECC Total number, of which: 71 36 71 32 SPAS/SECPAH that collect information about the need to pay for 14 12 7 10 the requested medical documents Report that claimants pay for …: - Medical report/A5 medical certificate, from a specialist physician 10 12 5 8 - Medical letter/summary medical record, from the family doctor 7 8 4 5 - A clinical psychologist’s assessment, which is required for certain 23 25 14 24 medical conditions Sources: SPAS survey with responses from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS, January- February 2021; Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH) and children (SECC), from 32 counties and 4 districts of Bucharest, January-February 2021. Very few SPAS and SECPAH/SECC collect data situation is predominantly reported for adults and about the need to pay for medical documents (Table rarely for children. Specifically, it is reported about 5). The majority of those that collect data report adults living in rural areas, mainly because in many that claimants must pay for documents from both cases, the closest specialized health services are specialized physicians and family doctors. This private practices. 3.2 “One of the main problems is that some of the medical documents must be submitted in original. Not only in the context of COVID-19 but in general, the problem is that in rural areas there are no specialized physicians hence people must travel to a city for getting the needed documents.” (Interview with NGO representative, Brașov) In the opinion survey,108 SECPAH practitioners For comparison, regarding children, SECC estimated that within a typical pre-COVID-19 practitioners estimate that about 22 percent of the month, on average, 75 percent of the total number total number of child applicants were forced to of adult applicants were forced to pay for medical pay for medical documents within a typical pre- documents.109 In 15 counties, the obligation to pay COVID-19 month.111 They report the obligation is assessed as a barrier that hampers access to to pay for medical documents is a barrier that disability assessment “to a (very) large extent,”110 hampers access to disability assessment “to a while in the other counties, SECPAH practitioners (very) large extent”112 only for three counties. The do not report it as a barrier. They also confirm that children mentioned as most affected by this barrier the groups most affected by this barrier include are from poor households and those left behind by the elderly, those from rural areas, people living migrant parents who do not have a designated legal alone (with no help from family members), the representative. The NGO representatives shared poor or those from low-income households, and the similar views in interviews, adding that people homeless. without health insurance are among the most affected.113 108 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=201) and children (SECC, N=187), January-February 2021, from 39 counties and the 6 districts of Bucharest. 109 With a corresponding standard deviation of only 28 percent. 110 With average values of 4 or 5, on a scale of 1 (to a very small extent) to 5 (to a very large extent). 111 With a corresponding standard deviation of 26 percent. 112 With average values of 4 or 5, on a scale of 1 (to a very small extent) to 5 (to a very large extent). 113 Out of the 20 interviewed NGOs, 11 deliver assistance and support services in obtaining the necessary documents, namely intermediation, referrals and accompanying at specialized physicians, support with a clinical psychologist’s assessment, and financial support. Most of these are NGOs with a large number of members and provide these services through all their subsidiaries/ branches. Chapter 3 I 73 3.3 “If the persons have very low incomes and do not have a CAS [Health Insurance Fund] insurance, and the medical tests required for the submission of the file for the disability certificate are not reimbursed by the CAS, the persons give up and stop the procedure for the disability certificate. Uninsured people, for example, who are close to the legal retirement age and are ill and can fall into a category of persons with disabilities. In Bucharest, there are NGOs or partnerships between the General Mayor’s Office and Regina Maria Private Health Network, which offer a minimum package of free tests for persons preparing the file for being classified as having a disability. This does not apply to the rest of the country, there is a disaster! ... Uninsured persons who have to prepare the file for being classified as having a disability, if they have to pay for the medical exams, they give up. I think that very clear social policies need to be implemented in this field.” (Interview with an NGO representative, Bucharest) Additionally, in focus groups, SECPAH “to a (very) large extent”116 only in seven counties. practitioners mentioned another structural problem Child applicants must provide a clinical that creates difficulties or causes people to drop out psychologist’s assessment at first assessment of the application process: the uneven availability (during lifetime), and then only in cases stipulated of imaging assessment services across counties, by legislation (approximately 75 applications, on although there are many deficiencies that require average per county, in a typical pre-COVID month). this type of investigation. In some periods, a According to SECC practitioners, about 45 percent computer tomography from public health units of them pay for this document,117 but only because was not available in some counties. In the case of “many parents choose to go to a private practice.” other types of disabilities, the difficulties do not Accordingly, the SECC specialists do not consider pertain to “old” structural problems, but to changes this to be a barrier that hampers children’s access implemented because of the COVID-19 pandemic. to disability assessment.118 The interviewed NGO For example, people suffering from HIV/AIDS had representatives agree, and report that especially a lot of trouble obtaining the required documents children and young people with psychiatric or from doctors in the public hospitals, as these mental health impairments tend to delay applying have become COVID-19 hospitals and have been for a disability certificate as an effect of “hope of overwhelmed by patients. healing” or fear of being stigmatized. Based on their interactions, both SPAS and SECPAH/SECC representatives report that most 3.4 claimants must pay for a clinical psychologist’s assessment, requested in the case of mental health problems (Table 5). This situation is common to children and adults, from urban and rural areas. In the opinion survey,114 the SECPAH practitioners provided additional information. First, they estimated that in a typical pre- “The people who give up – in the case of many COVID month, on average, about 300 out of 490 illnesses, imagery exams are required, at one point applications (or 61 percent) also needed a clinical we did not have any functional equipment in psychologist’s assessment. Second, they reported the county – in the public system it would take that, on average, 72 percent of adult applicants with several months, in the private system it would cost mental impairment were forced to pay for medical a lot, the expenses for such investigations are not documents.115 Yet, this represents a barrier that reimbursed.” (Focus group, SECPAH) hampers the adults’ access to disability assessment 114 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=201) and children (SECC, N=187), January-February 2021, from 39 counties and the 6 districts of Bucharest. 115 With a corresponding standard deviation of only 31 percent. 116 With average values of 4 or 5, on a scale of 1 (to a very small extent) to 5 (to a very large extent). 117 With a corresponding standard deviation of 31 percent. 118 An average value of 2 and standard deviation below 1, on a scale of 1 (to a very small extent) to 5 (to a very large extent). 74 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 3.5 3.6 “When it comes to mental illnesses/mental disorders there “We have to consider group 1, including persons is a certain inertia both on the part of the affected person with potential psychiatric disorders, and group 2, and of the family. Thus, after the onset of a disease, the first including persons with motor/somatic/physical thought is not to get a disability certificate, because there dysfunctions, separately. The percentage of is hope for recovery, so this request follows several years those applying for a disability certificate in group of efforts/hope. […] Strictly from the perspective of the 2 is higher. Usually, they have their family by psychiatric disorders/mental disorders/mental illnesses, it their side, which will take these steps, while for is less common for a young person, with the onset of the the young people in group 1, the family will be disease around the age of 16, to immediately apply for a tempted to delay the procedure so, in this case, disability certificate, it usually takes longer.” (Interview with the percentage could be lower.” (Interview with an NGO representative, Sibiu) an NGO representative, Sibiu) The second main problem connected to At the county level, almost half (17) of the obtaining medical documents involves fraud, and surveyed SECPAH reported complaints/ how suspected cases are addressed. According to notifications of suspicions of fraud regarding the SPAS survey, fraud seems to be very rare. For the declaration of a health condition by an adult; the past 3 years (2018–20), among the 71 surveyed between 1 and 65 per county, in 2020.120 In contrast, SPAS, only 3 large cities reported a total of 6 only one SECC reported such cases. Out of all complaints/notifications of fraud, regarding the comprehensive disability assessment services, 11 declaration of a health condition by an adult, from for adults (SECPAH) and 6 for children (SECC) family, neighbors, or any other person or institution. developed a procedure for how suspected fraud In addition, only one SPAS office reported one case cases should be treated. However, regardless of regarding a child. In the same period, no SPAS whether they have a specific procedure, both initiated any proceedings ex officio in any case services investigate any suspicion of fraud regarding suspected of fraud connected to the certification of medical documents (30 of the 36 surveyed SECPAH, a persons with disabilities-related health condition. and 27 of the 32 SECC). Most investigations were Correspondingly, only one SPAS office from a initiated at the request of the DGASPC (including ex larger city reported having an approved procedure officio), but also of the County Agency for Payments for how suspected fraud cases are treated, but did and Social Inspection, police/prosecutor’s not attach it in the survey response package. All offices, as well as Prefecture, the Adult Phone,121 other SPAS offices lack such a procedure, saying ANDPDCA, or people from the community.122 “it is not needed.” Nearly all SPAS make an ad hoc The dominant practice is to request an additional verification or record the suspicion in the social medical examination, and in the case of SECC, to inquiry and notify the SECPAH/SECC; very few report the case to the County Directorate for Public refer the case to other institutions, such as the Health; rarely are cases referred to the Romanian County Directorate for Public Health, the Romanian Physicians’ College, the Psychologists’ College, or Physicians’ College, police/prosecutor’s offices, to police/prosecutor’s offices. and so forth.119 119 Also, 9 SPAS out of 71 in the sample answered: “we do nothing.” 120 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH, N=36) and children (SECC, N=32), from 32 counties and 4 districts of Bucharest, January-February 2021. 121 The Adult Phone is a service for emergency reporting developed in some DGASC. 122 The distribution of the SECPAH’s responses was the following: Investigations initiated at the request of DGASPC (including ex officio)—29; County Agency for Payments and Social Inspection—9; Police/Prosecutor’s Office—9; Others—5. The corresponding values of the SECC’s responses were: 23, 1, 0, and 4. Chapter 3 I 75 3.7 3.8 “The vast majority of people “Other people, although having a severe permanent disability, were called think they are sicker than they for reassessment following false complaints, which can be considered of really are. Some of them even criminal nature. Someone filed a complaint about a person, under a different pretend. We “see” those, and name, i.e. my name. I went and explained to the head of the [assessment] eventually, if the good word committee that I had not filed any complaint against those people and that is not working, we send them what had happened, i.e. that they used my name, could be considered a to an additional examination, criminal offence. However, the persons subject to the complaint were sent otherwise, we do not support for reassessment at a university clinic in Bucharest or Târgu Mureș, in the them.” (Interview with a midst of this pandemic. They put those people to a lot of expenses and, more national NGO representative, specifically, they endangered their lives following false claims, as I had already Brasov) told them. Following the reassessment, those persons were still classified as severely disabled and entitled to a personal assistant… Such abuses should be stopped.” (Interview with a national NGO representative, Bucharest) Regarding suspicioned fraud in medical of persons with disabilities (from less than documents, the interviewed NGO representatives 6,000 to 38,000 in the official statistics) is the said: main reason why NGO representatives say that 1. Cases of fraud are mostly isolated and not differences in the medical and social systems are systematic: the main source of those discrepancies, since the 2. A problem, in the opinion of the NGO differences in the composition of the population representatives, is the “abusive” way in which cannot be that large. the system handles the cases of people who are 4. Another problem is caused by the lack of data wrongfully blamed or suspected of fraud. exchange between institutions and the lack of 3. NGO representatives say the problem with willingness or capability to cross-check data fraud is structural, an effect of the system’s low collected from application files with the existing capacity and fragmentation. The considerable national registries, let alone interoperable discrepancies between counties in the number systems. “A few years ago, the organization was receiving many complaints that there were blind people who could actually see and drive their cars, so the organization sent 3.9 a standpoint to the DGASPC in which it said that a driver’s license was not even compatible with a mild disability (third degree) and requested a cross verification of the database with the list of blind people holding a driver’s license. This verification did not take place, why…?” (Interview with a national NGO representative, Brașov) In consensus, NGO and SECPAH representatives and non-compliance with specific legislation. The mention a “legislative flaw” with the medical- vulnerability of the system concerns people with psychosocial criteria and the complex assessment multiple impairments who choose to apply for just procedure that can pave the way to suspected fraud one impairment, most often because they cannot 76 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM afford to obtain the required medical documents for of the disability criteria, as pointed out in focus all of them, as well as cases of conditions that have groups with SECPAH and CEPAH members, but fluctuating manifestations. On the one hand, NGOs not by those persons with disabilities who were have raised this issue precisely because, in their interviewed or the NGOs that represent them. At experience, it is quite common for such cases to be least in recent years, according to SECPAH and suspected of fraud. On the other hand, during focus CEPAH representatives, an important part of the groups, SECPAH doctors mentioned difficulties medical professionals, particularly orthopedic and related to the complex assessment of cases with rheumatologist doctors, wrongly advises people multiple impairments, as they focus on the “main” to apply for a disability certificate even for health one (the one documented in the application file) conditions that do not comply with the disability and not on the collateral ones, as provided by the criteria as per the current legislation. This creates regulations in force. noise in the system, false expectations, and a general Finally, the third main problem involves the fact perception of inefficiency and unfairness. that medical professionals have limited knowledge 3.3. Obtaining the social inquiry from SPAS and compiling the application file After obtaining medical documents, the next step is registration of the social inquiry application.127 In to apply to the SPAS for a social inquiry.123 As shown practice, the social inquiry applications should in Figure 6 (in Section 3.1), the average monthly be submitted as written forms to the registration number of social inquiry applications varies office within the municipality or SPAS. Only a between 23 in rural areas to 80 in larger cities.124 few localities accept telephone applications or Most of those applications (about 70 percent) ones sent via email. Even among the large cities, are reassessments to renew an existing disability only half of those surveyed accept applications by certificate; approximately a quarter are applications phone or email. In most of the surveyed localities, for an initial assessment (during lifetime), while the the application can be submitted in person by the other 5 percent are from people with a permanent applicant, his/her legal representative, a member of certificate who seek reassessment due to a change his/her family, or a personal assistant. An applicant in their medical or social situation. subject to interdiction can submit a request for social Among the applications for social inquiry, about inquiry in just a third of all localities (both urban three per locality per month, on average, belong to and rural). In about half of urban localities and a young people aged 18–26,125 out of which two apply third of rural ones, the social inquiry application for reassessment and one applies for the first time. can be submitted by any person who represents Applications for social inquiry from people of 16–17 the applicant, while just a few localities (mainly years are fewer than two per locality per month, on urban ones) accept applications from an NGO that average.126 represents the applicant. Only a third of the surveyed SPAS have an Beginning in 2019, a simplified electronic approved procedure (or sections/chapters in the procedure for requesting a social inquiry assessment general procedure) concerning the submission and was made available within the Unique Electronic Point.128 123 Data in this section come from the SPAS survey with responses from 71 administrative-territorial units situated in 26 counties, January–February 2021. 124 Data for November 2020. However, 55 percent of the surveyed SPAS showed that, in the context of the COVID-19 pandemic (in 2020), the number of applications for a social inquiry submitted to SPAS “stayed flat;” 21 percent of SPAS appreciated that “it decreased;” 17 percent of SPAS said that “it increased;” the other 7 percent of SPAS did not answer to this question. There are no significant differences between rural and urban localities. 125 On average, in November 2020, less than three in rural localities, and more than five in the larger cities (SPAS survey, N=55 valid responses). 126 On average, in November 2020, less than one in rural, and over four in larger cities (SPAS survey, N=55 valid responses). 127 A total of 24 localities, out of which 8 communes, 3 small cities, and 13 larger cities (SPAS survey, N=71 valid responses). 128 This procedure has been included in the handbook of procedures for a standardized implementation of life events, part of the provisions of the Digital Agenda Strategy in Romania. The procedure included in the handbook refers to all the steps for obtaining the disability certificate and corresponding benefits; therefore, it also covers the part on conducting the social inquiry. Chapter 3 I 77 On this electronic platform, claimants have know me, why don’t they use those and I must access to all the requested information. They pay for more copies?”131 can also initiate the procedure and obtain the 2. The photocopied and certified copies involve standard application form. However, only very few costs that many have trouble affording. For this municipalities in the country implemented it.129 reason, some NGOs offer a “photocopy kiosk” After registration, the applications are sent to service, where they provide all standardized a social worker, or, in small localities, the person forms, make free photocopies, and help with social assistance responsibilities who informs applicants fill out the forms.132 applicants of the requested documents. Only after 3. Those interviewed said that not only the file the person gathers the required documents can he/ but the whole procedure is “bureaucratic and she return to the SPAS and make an appointment the necessary steps are difficult to do as if they for the social inquiry. In fact, the application for want us to give up,”133 and indeed, “many are social inquiry is only complete after all the other giving up because they would need much more documents are collected (see also Section 3.2). support, which unfortunately the authorities do not provide.”134 Notably, the Social Inspection 3.3.1. The Application File and Access also reports that only 56 percent of the surveyed Barriers SPAS offer counseling services on how to compile the file for disability assessment.135 The documents required for disability assessment are regulated by GD no. 430/2008, Art. 6. However, 4. The file is “thick” and the procedure the SPAS may decide to add other documents “cumbersome,” even more so given that the or request some in electronic format, photocopy, initial information is insufficient: “We would certified copy, original, or some combination. need to know from the very beginning not only Nearly all SPAS included in the sample require the the list of documents but also from where and applicant to gather a set of documents before the how to get them, don’t just go to the counter social inquiry can take place.130 [at SPAS] where they turn us back three or four Table 6 illustrates how many and what times because we don’t have the necessary documents, and in which format, are included in the documents.”136 application file. It also shows differences between 5. Because of these reasons, “many elderly, localities. Figure 7 shows that about half of the particularly from rural areas and if they have a surveyed SPAS cannot estimate how many days an pension, do not want to spend their energy and applicant needs to gather all these documents - they time for applying for a disability certificate.”137 have never measured it. However, among those At the same time, such a procedure is “almost who provide an estimate, a third of SPAS, especially impossible, for example, for homeless people. A those from rural areas, tend to say less than a week. homeless person cannot compile this kind of file The others, particularly from urban areas, provide on his/her own; only if he/she stays in a shelter much longer estimates, between 10 and 30 days. and the social worker of that shelter helps, The interviewed persons with disabilities and assists, and accompanies him/her. But they have NGO representatives reported the following: become homeless due to trauma and usually have difficulties in complying with the rules of 1. There are many required documents and, in a shelter. They need their independence, and most cases, applicants must provide the same generally run away or leave the shelter before document year after year: “I brought the same such a complex file can be put together.”138 papers last year and the year before, they already 129 PCUE (2021). 130 The exceptions are only one small city and two communes. 131 Interview with a person with disabilities, male, 45 years old. 132 Interview with NGO representative, Arad subsidiary. 133 Interview with a person with disabilities, female, 52 years old. 134 Interview with NGO representative, Timis. 135 ANPIS (2019: 11). 136 Interview with a person with disabilities applying for the first time, female, 36 years old. 137 Interview with NGO representative, Bucharest. 138 Interview with NGO representative, Bucharest. 78 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Table 6: Documents collected in different localities prior to the mandatory social inquiry Rural Small Large urban urban Total number of surveyed SPAS 43 10 18 Any of the below documents 41 9 18 The applicant’s ID On electronic formant 3 1 3 Photocopy 29 8 15 Certified copy 1 0 0 Original 29 5 8 ID of the legal representative (as the case may be) On electronic formant 3 1 3 Photocopy 25 8 15 Original 27 5 6 IDs of the persons living with the applicant On electronic formant 1 1 2 Photocopy 14 5 5 Original 11 4 2 The disability certificate that expires (in the case of On electronic formant 2 1 4 reassessments) Photocopy 28 8 17 Original 19 4 4 Medical report from a specialized physician On electronic formant 2 1 4 Photocopy 24 5 12 Original 23 4 8 Medical letter from the family doctor On electronic formant 2 1 4 Photocopy 23 6 12 Original 23 5 8 Psychological assessment On electronic formant 2 2 4 Photocopy 15 5 6 Certified copy 0 1 0 Original 18 4 8 Marriage/death certificate/divorce judgment (as the On electronic formant 2 0 0 case may be) Photocopy 17 3 10 Certified copy 0 1 0 Original 14 4 4 Pension slips (in the case of retired persons) On electronic formant 2 0 4 Photocopy 26 6 15 Original 23 4 5 Hospital certificate (in the case of persons who were On electronic formant 2 1 2 hospitalized) Photocopy 15 5 9 Original 16 2 5 Revenue certificate, for taxable revenues, issued by On electronic formant 2 1 2 Fiscal Agency (persons with no income) Photocopy 18 4 9 Original 19 4 5 Civil judgment - guardian (as the case may be) On electronic formant 2 1 3 Photocopy 21 6 13 Certified copy 0 1 1 Original 18 4 4 Regarding the applicant’s children (including adult Only information from interview or observations children) from home visits 27 7 13 Documents 16 3 5 Regarding the applicant’s education, employment Only information from interview or observations from home visits 33 6 14 Documents 10 4 4 Regarding the applicant’s dwelling - address, number Only information from interview or observations of rooms, amenities, etc. from home visits 37 9 18 Documents 6 1 0 Rail file Yes 3 0 2 Source: SPAS survey with responses from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January- February 2021. Notes: If the sum per category of documents is higher than the total shown in the first row of the table, it means that some SPAS request that document in two or more formats. If the sum per category is lower, it means that some SPAS do not require that document at all. The documents requested regarding the applicant’s children may include identity documents, marital status certificate, birth certificate, revenue documents, and psychological file. The documents requested regarding the applicant’s education and employment may include employee certificate and diploma of studies. Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all three types included in the sample. Chapter 3 I 79 Figure 7: Average number of days in which a person applying for social inquiry may gather all requested documents, as estimated by the surveyed SPAS (number) 35 36 32 28 23 23 24 19 20 16 17 15 15 11 11 11 9 8 9 7 6 5 4 5 4 5 3 2 3 2 3 3 3 1 0 0 Cannot 1 zi 2 3 5 7 10 20 30 days estimate/ Don’t know Rural Small urban Large urban Total SPAS sample Source: SPAS survey with responses from 71 SPAS from rural localities (N=43), small urban (N=10), and large urban (N=18), which are situated in 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January-February 2021. Note: The figure shows the cumulative frequencies. Reading example: Of the total sample of 71 SPAS (blue bars), 35 did not respond and 36 provided estimates between 1 day and a maximum of 30 days. Of these SPAS, 4 claimed that the required documents can be collected in one day, 11 claimed that the document collection process is completed in a maximum of 2 days (the 4 SPAS that estimated a single day are included), 16 said that document collection is completed in a maximum of 3 days (the previous estimates of 1 or 2 days are included), and so on. ”At the end I waited a very long time - 2 months – in order to get the certificate. After 3.10 that I had to go in the other building to bring a copy of the Certificate and to sign another paper to be registered for payment. But I didn’t understand that I had to do this, and I didn’t go to sign for being registered for the payment, so I didn’t receive the money for this reason. This is something that should be changed. because I lost the money for that period and is not correct.” (Interview with the daughter of a person with disabilities, woman, 54 years old) The SPAS representatives confirm the existence for the file; (iii) lack of proof or official evidence of of such access barriers; according to them, in about age at which the disease was officially identified; half of the surveyed localities, there are adults and (iv) lack of awareness about the existence who, because of their health condition (a long- of and ability to apply for a disability certificate term chronic disease), could have requested the and its associated benefit-service package.141 For disability certification but have not applied for comparison, regarding children, only 17 percent of one.139 SPAS representatives estimate that about the surveyed SPAS, mostly from larger cities, think 10 percent, on average, do not apply.140 The most there are children in their community eligible for a frequently cited reasons for not applying involve disability certificate who do not apply. The major various access barriers (similar to those mentioned access barrier for children is reported to be their by NGOs), such as (i) lack of support provided by parents’ low level of education, lack of awareness, authorities, including municipalities, SPAS, as well or shame in initiating the application. as DGASPC; (ii) lack of money to obtain documents 139 A number of 37 out of the 71 surveyed SPAS, of which 19 from rural areas, 5 small cities, and 13 larger cities. Data from the SPAS survey covering 26 counties, January–February 2021. 140 The average estimates vary between 8 percent in rural areas and 13 percent in larger cities with corresponding standard deviation values lower than averages. 141 These 4 access barriers were selected from a list of 11 options wherefrom the respondents were asked to select the 3 main ones for people in their community. They were elected by 19, 19, 14, and respectively 13 SPAS representatives. 80 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 3.3.2. SPAS Operation Models and Practices seven days in urban areas until the social inquiry is for Conducting the Social Inquiry carried out.143 The SPAS offices use two or all three of the following methods for conducting the social With all the required documents gathered, the inquiry: home visits, documents, and a combination applicant makes a second visit to the SPAS, delivers of documents and telephone, WhatsApp, or Skype the file, and makes an appointment for the social interviews. inquiry.142 According to the surveyed SPAS, on average, it takes three days in rural areas and Table 7: Methods for conducting and average duration of the social inquiry needed for disability assessment, by type of locality Total Small Large Rural SPAS urban urban sample Total number of SPAS in the sample 43 10 18 71 Social inquiry method used by SPAS: a. Home visits 43 10 18 71 b. Documents (no home visit) 19 8 5 32 c. Combination of documents and telephone, WhatsApp, or Skype 24 6 14 44 interviews Estimated average number of minutes for …: a. Home visits—round trip 46 63 75 56 b. Home visits—interaction with the applicant and his/her family 47 49 47 47 c. Social inquiry based solely on documents (no home visit) 23 24 32 25 d. Social inquiry based on a combination of documents and telephone, 24 30 27 26 WhatsApp, or Skype interviews Source: SPAS survey with responses from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January- February 2021. Notes: If the sum per column is higher than the total shown in the first row of the table, it means that some SPAS offices use a combination of two or three methods for conducting the social inquiry. Regarding the time estimates, only 12 SPAS (from 7 communes and 5 larger cities) reported that they measured those rigorously, the others providing just estimates based on experience. Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all types. Social inquiries based on home visits are involve usually one SPAS caseworker, especially in conducted in all types of localities, as shown in the underdeveloped and remote communes where Table 7. Home visits are used to gather and verify the SPAS consists of just one person with social information. They can help SPAS representatives assistance responsibilities (not a professional social form a better qualitative understanding of an worker).144 On average, a home visit lasts about 90 applicant’s overall situation. Then, the file is used minutes, out of which half is for the round trip and to cross-check and validate the information. Some half is for the interaction with the applicant and his/ SPAS, especially from rural areas, use this method her family. In urban areas, home visits are usually for all disability assessment applicants. However, carried out by a team of two specialists145 and last more often, home visits are used for “new” over two hours, out of which about 45 minutes are applicants applying for the first time, and for for the interaction with the applicant and his/her people who cannot move. In rural areas, home visits family and the rest for the round trip. 142 Only 19 SPAS, out of which 12 communes, 1 small city, and 6 larger cities, report that they conduct home visits for the social inquiry not only after but also before the persons deliver the complete file with documents. Data in this section come from the SPAS survey with responses from 71 administrative-territorial units situated in 26 counties, January-February 2021. 143 The estimates vary between 0 and 15 days in rural communities and 1 and 30 days in urban area. 144 Out of the 43 surveyed SPAS from rural localities, 50 percent report that home visits are done by only one caseworker; 35 percent by two SPAS members; 8 percent by three or more, including a policeman, a community nurse, a Roma mediator, or other community workers besides SPAS (this is the case especially in marginalized areas); and 7 percent did not answer. 145 Out of the 28 surveyed SPAS from urban localities, 25 percent report that home visits are done by only one caseworker; 57 percent by two SPAS members; 15 percent by three or more, including a policeman, a community nurse, a Roma mediator, or other community workers besides SPAS; and 3 percent did not answer. Chapter 3 I 81 Social inquiries based solely on the documents applying for reassessment, usually people with a gathered and delivered by the applicant are medium or marked level of disability (rather than conducted in fewer localities (32 of the 71 in the severe), or when the applicant visits SPAS in person sample; see Table 7). In all types of localities, this and an interview can be also performed. method is used mainly for “old/well-known” cases Figure 8: Distribution of social inquiries according to how they were conducted (% of total) 1 3 3 10 25 42 42 54 67 85 10 72 58 56 30 34 Rural Small urban Larger cities Rural Small urban Larger cities November 2019 November 2020 A combination of documents and telephone, whatsapp or skype interviews Social inquiries based solely on documents Social inquiries based on home visists Source: SPAS survey with responses from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January- February 2021. Note: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all types. The COVID-19 pandemic led social inquiries to Regarding adaptations for the inclusion of be conducted using a combination of documents vulnerable groups, the SPAS survey shows that: (i) and telephone, WhatsApp, or Skype interviews. in over 75 percent of the surveyed localities, social These methods were particularly adopted for inquiries based on home visits are conducted for people living in residential centers (public and people who cannot move and for people under guardianship or with a trustee; (ii) a few localities private), for children and adults under treatment (6 out of 71) do not conduct the social inquiry for in hospital (including abroad), and for those at homeless people, while the majority conduct these high risk of COVID-19 infection. To ensure the social inquiries based solely on documents; (iii) accuracy of the information in the social inquiry, in few localities, SPAS conducts social inquiries an additional working tool—”Declaration on own for people in detention, usually based on the responsibility”—has been used, through which the information collected from that person’s family and applicant ensures the accuracy of the data provided. in cooperation with the social workers from jails; Figure 8 shows that in the pre-COVID period and (iv) only in some localities, SPAS conducts social (November 2019) most SPAS predominantly inquiries for people in residential centers that are used home visits to conduct the social inquiry located in a different county than the one in which the person officially resides. According to the SPAS for adults applying for disability assessment. In representatives, the last issue “requires a legislative contrast, in November 2020, SPAS from small cities regulation to clarify the limits of competence of the considerably increased inquiries based solely on administrative structures at least at the local level. documents, while SPAS from larger cities shifted It is very difficult to deal with a case in the absence towards a combination of documents and telephone, of the persons for whom the disability assessment WhatsApp, or Skype interviews. A similar change is requested; all the more difficult to access the was registered regarding social inquiries for disability benefits of the people who live in the children, but on a smaller magnitude; home visits territorial area of another locality. The number of remained the dominant method. people in such a situation is constantly increasing, at least in the case of people living in institutions.”146 146 Citation from questionnaire Q1_SPAS. 82 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The surveyed SPAS offices do not have an applicant and his/her family or legal representative approved procedure, steps, or rules concerning have a contradictory or conflicting opinion or interactions with applicants while conducting representation, what the caseworker records the social inquiry.147  Some interact directly with within the social inquiry “depends from one case the applicant, while others interact only with the to the other” (in 52 out of the 61 valid responses). applicant’s family or legal representative. Aside Therefore, regardless of the method used to conduct from the standard questions and answers included the social inquiry, the interaction with the applicant in the social inquiry, only some take note of what and how information is selected and recorded vary the applicant is saying, recording it under various considerably, not only from one SPAS to another sections of the instrument. Thus, the recorded but from social worker to social worker. data are randomly selected and noted. When the 3.11 3.12 3.13 “They were nice (the ladies from “On the one hand, things were “- [The social inquiry] was the social assistance service), made just on paper, usually… it is conducted at the DGASPC they were not bothered by the not a stereotype or…. but that is office, not at home. I fact that I did not have too much how things work in villages… in the understand that these are space, I have a small studio and I small counties… the social worker conducted at home in had to clear a chair so that they is not necessarily a skilled social the case of homebound could work, write things down on worker but someone who was put people. of people with more paper. They were not outraged by in that position precisely because serious problems. But I am all those piles of things. Because there are no other persons to do not homebound, so it was I rather use my place for storage this activity and, on the other hand, conducted only with the and less as an apartment, they it was also the fact that the person social worker at the counter, were nice, they were kind, they knew my mother. Knew our family a questionnaire that seems asked me the questions in the and my mother asked her to be a complete nonsense, yes/ questionnaire. According to their discreet about the social inquiry. no answers, can you walk question grid, I am autonomous, I And all this led to a survey that did independently, do you watch can live independently.” (Interview not actually take place.” (Interview TV, do you eat alone… this with person with disabilities, with person with disabilities, kind of questions… woman, 60 years old) woman, 33 years old) - So you filled out the form yourself? - Yes, yes, by myself, in front of the counter.” (Interview with person with disabilities, woman, 24 years old) The quality of data collected through the social a contact person in case of emergency, income inquiry affects the accuracy of the entire disability sources, as well as the local offer of services and to assessment. The surveyed SECPAH were asked what extent they can cover the applicant’s needs. to provide the research team with examples of Notably, the framework model of social inquiry “good” and “bad practice” social inquiries as part as provided in the current legislation represents of the package attached to the institutional Q2A the main source of information for several areas of survey. The examples they provided indicate that the disability assessment—education, social and “bad practice” refers mainly to missing information vocational integration, social integration, etc.—but regarding data on an applicant’s children, the this topic is developed in Chapter 4. network of friends and neighbors, the name of 147 Only one SPAS in the sample reported to have it and sent it to the research team. Chapter 3 I 83 3.3.3. The Instrument for Social Inquiry The social inquiry should follow a standard accurately assess the applicant’s physical and social framework model, as per GD no. 430/2008 (Annex environment is less than 7 for those conducted by 6). For children, the social inquiry should be rural SPAS, and less than 8 for those carried out by accompanied by an annex of environmental factors urban SPAS. The content of the social inquiries is developed from the ICF perspective, for which a further analyzed in Chapter 4. standard framework template was issued in Annex However, not all SPAS follow the framework 6 of Order no. 1985/1305/5805/2016. According model of social inquiry, as shown in Figure 9. Some to the SPAS survey, all localities use these two localities use a different template that is, according framework models for the social inquiry. Figure to them, “adapted to the local conditions.” The 9 shows that most social inquiries are conducted analysis of the sample of “good” and “bad practice” following the framework models, in all types of social inquiries150 provided by SECPAH and SPAS localities, both in November 2019 (pre-COVID) and revealed that, most often, the different templates in November 2020, to a larger extent for adults than are modified versions of the framework model. children. First, some of the sections from the framework The framework model of social inquiry includes model are replaced with a narrative essay on the data on the applicant; data on the applicant’s legal same topic. Second, part of the framework model representative; a section on autonomy highlighting is deleted. For example, information about the the person’s functional status (activities of daily assessment of the individual’s sensory and psycho- living and instrumental activities of daily living); affective status, relationships with neighbors, an evaluation of the person’s sensory and psycho- as well as the final sections151 on the assessment affective status; and a social assessment of the results are not recorded. In another example, person’s housing, family, friends, and neighbor the social inquiry does not include information network, and economic situation. Finally, it presents about food preparation, household activities, the identified needs and corresponding services, shopping, managing one’s own revenues, separate followed by conclusions and recommendations. categories for walking within and outside of the In the SPAS representatives’ perception, the social house, using transportation, following medical inquiry they conducted for adults on average recommendations, participating in leisure scored between 8 and 9, on a scale of 1 to 10, for activities, or the section on assessment of sensory completeness and accuracy.148 Thus, the existing and psycho-affective status. Third, the first section social inquiries would allow a “good” or “very of the framework model (on Individual Autonomy good” understanding of an applicant’s situation and Functional Status) is modified, and information in all spheres of life. The SECPAH practitioners is grouped under Types of Occupational Activities, are more critical, giving scores between 5 and 7 for with different categories than those provided in the completeness and accuracy of the information the legislation. Fourth, the framework model is regarding housing, economic situation, and completed with additional notes, observations, or community services.149 The general score (on a scale recommendations regarding the services needed by of 1 to 10) regarding the extent to which the social the applicant. inquiry data allow the SECPAH practitioners to 148 The corresponding standard deviation values are between 1 and 2, which indicates very high homogeneity in responses. SPAS survey with valid responses from 65 SPAS, from 26 counties, the districts of Bucharest are not included since the DGASPC also plays the role of SPAS, January–February 2021. 149 The housing information refers to the ability of the person with disabilities to choose where he/she lives, adjustments of his/her dwelling (actual and needed), the support needed by the person with disabilities in obtaining a residence. The information about the economic situation refers to the the income and housing amenities of the person with disabilities, including the cost of disability in that person’s family and its impact on a decent lifestyle, as well as the financial aid necessary to allow that person to live together with their family and the community. The information on services regarding the local service offer, the person with disabilities’ access to the existing services, and his/her needs in terms of access to health care and rehabilitation services. Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N = 201), January–February 2021, from 39 counties and 6 districts of Bucharest. 150 Sent as part of the attached packages to the Q2A_SECPAH and Q1_SPAS surveys. 151 Namely, if the care and treatment for the individual can be performed in the claimant’s home, which are the identified needs, as well as the needs that can be covered by the local offer of services. 84 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 9: Share of social inquiries for disability assessment carried out for adults and children in compliance with the framework model (% of total social inquiries) 86 86 87 76 80 79 77 72 64 66 62 64 58 60 60 56 Rural Small urban Larger cities Total SPAS Rural Small urban Larger cities Total SPAS sample sample Nobember 2019 November 2020 The percentage (%) of social inquiries carried out for adults (18+ years of age) in compliance with the framework-model (Annex 6 of GD 430/2008) The percentage (%) of social inquiries carried out for children and young people who have filled in the Annex of environmental factors, in accordance with the framework-template (Anes 6 of Order 1985/1305/5805/2016) Source: SPAS survey with valid responses from 60 SPAS, from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January-February 2021. Note: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all three types included in the sample. The main factors that influence the quality the quality of social inquiry cannot improve so long of current social inquiries mainly relate to as the SPAS compartments are comprised of just one understaffing and insufficient training of SPAS person with social assistance duties, as is the case in staff, as well as necessary improvements to the many rural communities (see also Section 9.1). In this framework model. The two main factors are regard, SECPAH specialists agree. However, they perceived differently by SPAS and SECPAH add that some adjustment to the framework model practitioners. SPAS representatives think the of social inquiry may help, but more importantly, framework model should be adjusted to better staff at the local level should benefit from training capture how persons with disabilities live and how on how to use this instrument, since many of them they would want to live. They also emphasize that use it superficially or erroneously. “The social inquiry – it seemed a bit cold, it seemed standard and less focused on me, as 3.14 a person with disabilities, and rather focused on. material aspects. It was a kind of review of the living conditions but. somehow from a strictly material perspective. That has not changed much over time in my case. So, I was answering the same questions every year. And it was a bit. I mean. it was not something to be concerned about. because it did not have any annoying content or… but it was not useful either or maybe I did not understand very well why such information was being collected repeatedly since nothing else changed.” (Interview with person with disabilities, woman, 30 years old) Chapter 3 I 85 3.15 3.16 “The essential problems of the disease are under no “There were some STANDARD answers to circumstance to be found in that questionnaire and, based on the questions that they asked me, and one that questionnaire, they establish the type and the degree of could not give a free answer in which to disability. … I was not asked if I cooked my own food, if I could say that, depending on the period… I feel do some shopping on my own, I was not asked if I left home or I do not feel well. That if today I feel very alone or if, God forbid, I was home alone, could I manage on my good, I climb the mountain, tomorrow I own? These are questions that are not related to... the problems may not even be able to get out of bed.” that a person with disabilities faces every day. […] And that is (Interview with person with disabilities, because the questions based on which a patient with health woman, 25 years old) problems is assessed are far too... they do not highlight enough the problems that a patient is really facing. I, at least, tried to tell him that I cannot manage on my own and that I am afraid to be alone at home. I often cannot get dressed on my own and the answer was: these are not important things for our assessment form.” (Interview with person with disabilities, woman, 52 years old) A section that should reflect the point of view concerning adjustments to the applicant’s dwelling of the person with disabilities—such as fears, (actual, planned, and needed), the extra-cost of concerns, how he/she would like to live, and disability and its impact on family life, the applicant’s what he/she would want to do in the future— lifestyle (actual, planned, and wanted), family and was among the improvements more frequently community resources to help and support the mentioned in interviews. Currently, the framework applicant, or the services that the applicant has model is largely focused on support needs, while already benefited from, which would be very useful information on what the person likes and wants, for the phase on drafting individualized plans (see or his/her plans, is very scarce, if available at all. Chapter 6). Also, the social inquiry does not record information 3.4. Registering with SECPAH for disability assessment Registration is the last step of the second phase of registered. Those outputs feed into the next phase of the delivery chain, aimed at efficiently registering the delivery chain: the disability assessment, which the target population and vulnerable groups and is analyzed in Chapter 4. The main steps of the accurately recording their information. Registration registration process (see Flowchart 4) are analyzed consists of recording and verifying information. The in the following sections, which consider the more file containing documents gathered and verified by detailed levels and aspects of implementation, SPAS during the intake step (discussed in Sections various operating modes developed by SECPAH/ 3.2 and 3.3) represent the inputs to the registration DGASPC at the county level, and various step. The outputs include complete, validated, and stakeholders’ opinions and beliefs. verified information on the applicants who have 86 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Flowchart 4: Overview of the registration steps The application From SPAS file arrives at Rejected EXIT In 5 Days files after the SECPAH social inquiry Receive the file Admitted in Register the file maximum Verify the file Appointment 60 days ASSESSMENT It may ask more INTERVIEW documents There are big differences between counties have to register for reassessment every 1–2 years. concerning the number of assessment requests, as Third, the minimum number of registered files discussed in Section 3.1. First, data presented in this in a county (GR) was more than five times smaller chapter are just estimates done by SECPAH for this than the maximum (in OT), in the pre-COVID research, as most of the counties do not rigorously period (see Figure 10). The gap between extremes collect information regarding registration. Second, diminished from over 5 to 4 in 2020. Also, the the number of registered files seeking disability number of applications for disability assessment assessment is not significantly correlated with the declined in 2020 as compared with the pre-COVID total number of persons with disabilities officially period, in nearly all counties.152 Overall, based on recorded within the county. the sample of SECPAH from 28 counties and 4 For example, as shown in Figure 10, among the districts of Bucharest, the total number of registered bottom five counties with the lowest total numbers files dropped by over 2,400 (or by 15 percent) in 2020 of registered files are county GR, with about 10,600 compared to 2019.153 This is a result of measures to persons with disabilities, along with county SB prevent and combat the effects of the COVID-19 with 16,600, as well as county TM with 26,600 pandemic, in which the procedures for granting persons with disabilities (data for December 2019). disability certificates were temporarily changed.154 This means that a county with a large population Thus, DGASPC automatically extended, for adults of persons with disabilities does not necessarily and children, the validity of expiring disability result in a correspondingly large number of files certificates for 90 days after the state of emergency requesting reassessment, as many of them may hold ended,155 reducing the number of reassessment a permanent disability certificate and hence do not applications during this period. 152 In our sample, only three SECPAH reported, for November 2020, a number of registered files larger than that from a typical month (or November 2019), namely MH, SV, and B_S5. 153 In the counties with valid answers, the cumulated number of registered files decreased from almost 15,900 to around 13,500. 154 Law no. 55/2020, Art. 4(5). 155 As per EGO no. 34/2020 amending and supplementing EGO no. 1/1999 on the regime of the state of siege and of the state of emergency. Chapter 3 I 87 Figure 10: Total number of files registered for disability assessment in selected counties, in November 2019 vs. November 2020 1043 631 490 421 200 175 GR B_S1 SB TM BC Total AG CT BV CJ OT sample Bottom 5 counties Average Top 5 counties Nov. 2019 Nov. 2020 Average 2019 Average 2020 Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 28 counties and 4 districts of Bucharest with valid answers, January-February 2021. 3.4.1. Transferring Application Files from appreciated that “only some” or “only a small part” of rural municipalities deliver application files SPAS to SECPAH for disability assessment within 5 business days There are two main routes through which following registration. application files (including documents and the The rest of SPAS (30 out of 69 localities that social inquiry) are transferred from SPAS to provided a valid answer) follow a different route; SECPAH/SECC (within DGASPC), as shown in they do not deliver application files to the SECPAH/ Flowchart 3 (in Section 3.1) and Figure 11. The SECC, but rather hand them out to applicants, first route is followed by most surveyed SPAS (39 who register them. In a third of these localities, the out of 69 localities that provided a valid answer) SPAS hand out the files along with a notification that transfer application files to SECPAH/SECC, regarding the appointment for the assessment mostly via email or mail/courier. Nearly all of interview, preestablished in cooperation with these SPAS declared that “most of the time” they DGASPC (SECPAH/SECC). The other two-thirds manage to observe the statutory term of five hand out the files and the applicants “go whenever business days after registration for delivering they can/wish, register the file and receive on files to SECPAH/SECC/DGASPC. In this respect, their own the appointment for the evaluation SECPAH management156 confirm that most of the interview/interaction” from SECPAH/SECC. In urban municipalities successfully complied with these situations, no statutory term is observed by the statutory term, whereas regarding the rural the SPAS. SPAS, opinions are more diverse: 12 of 32 counties 156 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties, January-February 2021. The 4 districts of Bucharest that responded with the survey are not considered here because in their case the DGASPC also plays the role of the SPAS. 88 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 11: How application files are transferred from SPAS to SECPAH/SECC/DGASPC, in February 2021 (number of SPAS) DGASPC 18 SPAS 16 7 2 5 5 4 3 4 4 1 Rural Small Larger urban cities 4. The files are handed out to the applicants who carry and register it to SECPAH/SECC/DGASPC 3. The files are delivered by SPAS by electronic mail/a special website 2. The files are delivered by SPAS by mail/courier 1. The files are carried to SECPAH/SECC by a SPAS representative in person Source: SPAS survey with valid responses from 69 SPAS, from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January-February 2021. Note: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; large urban = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all three types included in the sample. 3.4.2. Registering the File at SECPAH and assessment still involves thousands of people who every month must go to various offices across Scheduling an Appointment for the the country, some of them repeatedly, sometimes Assessment Interview traveling for hours, in order to register their application files, despite the available technology. There are three possible scenarios by which The SECPAH representatives reported similar applicants (18+ years old) can register their files estimates.157 Thus, 19 of the 36 surveyed SECPAH at SECPAH and schedule an appointment for the estimated that 75 percent of the total application disability assessment interview, depending on the files registered in November 2020 were delivered in locality in which they live and the relationship person to the institution.158 In the other 17 counties, between their hometown SPAS and their county the registered application files were more evenly SECPAH. distributed between files submitted in person to Based on the data reported by SPAS, it results the institution and those received via post, email that in Romania, the registration for disability (predominantly), and the Internet. 157 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. 158 The share varied across counties between 50 percent and 98 percent of the total, with an average of 75 percent and a standard deviation of only 14 percent. Chapter 3 I 89 In the first scenario, SPAS transfers the application files to SECPAH, after which the applicants submit a standard application to the registry of SECPAH/DGASPC by post, email, or, in light of COVID-19, by telephone, and schedule an appointment for the assessment interview.155 In the second scenario, the files are handed out to applicants who must bring them to the SECPAH/ DGASPC registry, where they fill out the standard application form and register the file. However, the SPAS obtains an appointment from SECPAH/DGASPC in advance and notifies the applicants, so as to shorten the waiting time and reduce exposure to any health risks. In the third scenario, the files are handed out to applicants who need to visit the SECPAH premises twice, first to submit the standard application, register the file, and schedule an appointment, and second for the assessment interview. The third scenario is the most frequent, as Figure 12 shows based on data about applicants from 66 surveyed localities. 159 Figure 12: Distribution of applicants for disability assessment, according to scenario used for SECPAH registration (% of total in November 2020) Scenario 3. People are on their own and they need two visits to SECPAH, one to register and schedule the 39.5 44.0 appointment and one for interview 76.6 9.5 Scenario 2. People carry and register the files to SECPAH, 12.9 but based on an appointment for interview pre- 51.0 established by SECPAH and SPAS 43.1 9.7 13.7 Scenario 1. Files are transferred by SPAS and people schedule their appointment including by phone Rural Small cities Larger cities Source: SPAS survey with valid responses from 66 SPAS, from 26 counties. The districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January-February 2021. Notes: Estimates determined based on the assumption that a SPAS follows the same procedure for all applicants. This is the dominant pattern, but there are also a few localities in which SPAS proceed differently from one applicant to another. Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; large urban = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all three types included in the sample. This is due to the persistent use of paper in the underused, with people being asked to repeatedly administrative processes, and not only regarding gather the same paper documents for each (annual) the disability assessment. Although applicants assessment, which afterward must be stored by are asked to provide at least some documents in SECPAH. electronic format, and some SPAS and SECPAH160 The application files for disability assessment (as well as SECC) collect these, “in the end, all files may be delivered and registered both to SECPAH and documents must be also available in paper and to the DGASPC Registry, in most counties, as format.”161 Thus, the available technology is heavily well as to other services or offices within DGASPC, 159 The SECPAH teams indicate that, in exceptional cases, they can also accept documents sent via telephone apps that allow these to be scanned or photographed. 160 Out of the 36 surveyed SECPAH, 20 reported that documents within the application files are both on paper and in electronic format. The other 16 SECPAH have the application files only on paper. 161 Interview with the chief of a SPAS from a large city. 90 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM in a few counties. As such, the process for managing • the standard application form for comprehensive and storing files is different from one county to assessment following the model provided in another. In most counties, SECPAH also undertakes Annex 4 to the decision; these duties on its own or shares them with the • a copy of the ID (original must be presented on CEPAH secretariat. Nonetheless, in counties the day of the assessment); with a large number of persons with disabilities, • medical documents requested by SECPAH (see the management and storage of files is usually Section 3.2); and carried out by a different DGASPC service, such as Archive. This is particularly the case in counties • the social inquiry carried out by the SPAS from with more than 20,000 persons with disabilities.162 the applicant’s domicile or residence, following How these duties are assigned affects the workload the framework model provided in Annex 6 to of the SECPAH practitioners. In counties in the decision (see also Section 3.3). which registration, management, and storage are The service/office that registers the files must carried out solely by SECPAH, they also have to transmit those to the SECPAH within 24 hours. This cover all manual work related to handling and is not a problem, according to the SECPAH chiefs, loading the files (from registration to assessment, especially given that, in most counties, SECPAH from assessment to the CEPAH secretariat, from conducts the registration (or most of it). Once the commission to storage, within storage, and so forth). files arrive at SECPAH, a specialist verifies them In line with the legislation, the file can be for completeness, based on the list provisioned in submitted by the applicant, her/his family, legal GD no. 430/2008.166 In most counties,167 this initial representative, personal assistant, professional verification is done by one SECPAH specialist personal assistant, an NGO of which the applicant trained to assess the completeness of the file, is a member, or any other person representing including medical data. In just four counties, files the applicant. With only two exceptions,163 in all are directly distributed to the SECPAH team of counties, a person under guardianship/curatorship specialists who go through the file and check the may submit the file by themselves, possibly with documents specific to each field, while in one the support of someone else. At the same time, district of Bucharest the initial verification is done in most counties (in 18 counties and 2 districts of by untrained, medium-level staff. Bucharest), a third party may submit the file of a The output of the initial verification is to sort the person under guardianship/curatorship even application files into three groups (see Flowchart without that person’s consent. 4 and Figure 13). The first includes complete files In the case of persons requesting reassessment, that are registered as admitted for the disability the file shall be submitted 60 days before the assessment. The second includes files that comply existing disability certificate expires.164 During the with the disability criteria, but need additional COVID-19 pandemic, disability certificates were documents. These files are also admitted. The last extended for both adults and children165 to ensure group includes rejected files. Figure 13 shows how the continuity of disability benefits during the the application files are distributed following the crisis. In some counties, the disability certificate initial verification in the surveyed counties. The was extended automatically, while in other counties dominant practice is to register 80 percent or more it was extended only at the applicant’s request. of the applications as complete. The documents required for disability assessment are regulated by GD no. 430/2008, Art. 6, and include: 162 Out of the counties that took part in the institutional survey Q2A, 7 have between 6,300 and less than 15,000 persons with disabilities, 13 have between 15,000 and less than 20,000, and 12 have 20,000–38,000 (data according to the MMPS Statistical Bulletin, December 2019). 163 Ialomita County and Sector 3 from Bucharest. 164 GD no. 430/2008, Art. 6, as modified by the Decision no. 927/2016. 165 As per Law no. 55/2020, Art. 4, para. 5. 166 Only 2 counties reported that a DGASPC specialist from a service different than SECPAH conducts the initial verification of the files; and 3 counties did not respond. Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest; January-February 2021. 167 In 28 counties and 3 districts of Bucharest. Chapter 3 I 91 Figure 13: The result of the initial verification of application files, admitted and rejected by county, November groups, a new social inquiry is usually requested because a document is missing but because it is not 2020 (%) in cases that contradict the conclusions of medical attached to the file in paper format. documents (for example, if a person who cannot The statutory term for the initial verification is 100% see drives a car, or if a person who cannot move is five working days, as per GD no. 430/2008. Within found cleaning the garden). The medical documents five days, SECPAH must inform the person of the 80% proving the onset of disease refer mainly to additional verification results, which happens “in most or all information for determining the person’s medical cases,” say the SECPAH chiefs. The applicant is history. More psychological evaluations are usually either rejected or admitted, with the condition to 60% requested when the Mini-Mental State Examination provide the requested additional documents if the (MMSE) for cognitive or intellectual functions and file is considered incomplete. Also, the assessment 40% Global Assessment of Functioning Scale (GAFS) interview is scheduled, and the applicant gets the test scores are not synchronized with descriptions appointment. SECPAH must conduct the interview 20% in the other medical or social documents. However, within 60 days. SECPAH chiefs from 11 counties report that In nearly all counties, a SECPAH specialist applicants are “only sometimes” informed about schedules the assessment interviews and informs 0% 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 the additional information via formats accessible the applicant, most often via telephone or registered to all persons with disabilities, as it depends on the post. Scheduling is done on a specific day and time, Admitted - Complete files Admitted - BUT additional documents are needed Rejected - EXIT available materials. but there are also nine counties that provide the The main reasons to reject a file include: if the applicants with only a specific day, which may result Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 25 counties and 4 districts of Bucharest with valid answers, January-February 2021. applicant’s official residence is a different county in a longer waiting time in at least some periods. than the SECPAH where he/she applies; lack of the At the time of the Q2A questionnaire, all SECPAH original identity documents; medical conditions were able to schedule assessment interviews within Overall, at the sample level, 79 percent of the same time, while in most counties no application that do not comply with the disability criteria; lack the mandatory period of 60 days (about half could the application files are complete, 18 percent are file is rejected, there are a few counties in which 1 in of medical documents or the mandatory social schedule an applicant to appear for an assessment incomplete, and about 3 percent are rejected and every 10 (more often) and even 1 in every 5 files is inquiry; as well as “when the applicant is in an interview within two weeks). Once the person exit the process. Figure 13 shows the considerable rejected (up to 70 files per county). advanced state of intoxication.”168 There is a lack of is informed, the intake and registration phase is differences between counties. In some, the practice In the case of incomplete files, all SECPAH ask uniformity among counties regarding the accepted finalized, and the disability assessment phase is to qualify a lot of the files as incomplete, asking for additional data that usually refer to a new social document format. Certain counties only accept begins. applicants to submit more documents. Thus, the inquiry, medical documents confirming the onset of paper documents, and so might reject a file not share of incomplete files ranges between 1 percent disease, and additional psychological evaluations. and 79 percent (or between 2 and 420) per county. At As the SECPAH practitioners explained in focus 168 Quotation from the Q2A questionnaire. Figure 14: Number of SECPAH that adapted their submission and registration procedures for vulnerable groups (number of counties) Are there specific procedures (or sections/chapters of the general 3 9 4 3 3 4 1 19 procedure) for the submission and registration of files, which concern the following groups ...? Young persons aged Persons in social Persons hospitalized in Homeless persons Persons in prisons Persons under Persons with a low level Immobilized persons 18-26 institutions for adults psychiatric facilities guardianship/ of education (maximum (centers, sheltered houses) curatorship 8 grades) Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. 92 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 3 I 93 3.4.3. Adapting Registration for “Hard to easily even if the process is clearly described step by Reach” Population step hence they need accompaniment and not only information;”170 also, many applicants “are illiterate The procedure for registering the files and scheduling as they have never been enrolled in education.”171 the disability assessment is unitary at the national The risk of miscommunication in this phase is great: level, based on the provisions of GD no. 430/2008 people might not know where to go, how or where and Order no. 2298/2012.169 Within the intake to register, or what documents and information to and registration phase, two-way communication provide. Such confusion contributes to inefficient is needed to (i) notify people about intake and processes and inaccurate information. It can also registration procedures, locations, and points of create bureaucratic hurdles that deter people from contact; (ii) support scheduling appointments; (iii) registering. gather accurate information and documentation; A quarter of the counties that participated in the (iv) respond to queries; and (v) facilitate corrections national survey do not have the physical capacity to or updates as needed. receive files and communicate with applicants in a Some vulnerable groups mentioned the lack of confidential manner.172 This is an additional barrier adapted communication as a barrier to registering to proper communication during the registration for disability assessment. Thus, interviewed persons step. Overall, the submission and registration with disabilities and NGO representatives pointed procedure has few adaptations for the specific needs out that wearing a mask represents a serious and constraints of vulnerable groups. SECPAH has communication barrier for people suffering from adapted this procedure in more counties (19) only hearing impairment; many applicants do not have a for people who cannot move, as current regulations phone, computer, or Internet, and even fewer have foresee specific actions for this situation. For all a digital phone, which hinders communication other groups, adaptations to the procedure are with the institutions; many applicants also suffer available only in a few counties. from mental impairment “and do not understand 169 Order no. 2298/2012: Framework procedure for the assessment of adults for the classification in a degree and type of disability. ANDPDCA told the research team that this regulation is currently under review. 170 Interview with NGO, Bucharest subsidiary. 171 Interview with a national NGO. 172 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January–February 2021. 94 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Conclusions of Chapter 3 The objective of intake and registration, the second phase of the delivery chain, is to efficiently register the target population and vulnerable groups, and record their information accurately. To efficiently deliver this second chain, several systemic adjustments are needed. First, improvements should be made in the field of data management and institutional procedures. There is a need to have, at the first encounter with the applicant (SPAS), an approved procedure, steps, or rules concerning the interaction. On the one hand, it is essential that SPAS and SECPAH/SECC have access to the national registers and administrative databases, to reduce applicants’ efforts to obtain the necessary 1 documents and, at the same time, allow cross-checking by institutions, while reducing the amount of paper used in the process. On the other hand, it is important that SPAS and SECPAH/SECC systematically collect, record, and analyze data about intake and registration, including on the phenomenon of drop-out/refusal during the process in order to identify the dysfunctions of the system that become access barriers to disability assessment. Second, improvements are still needed to reduce barriers for vulnerable groups. Financial and geographical accessibility obstacles are reported in obtaining medical documents. In addition, nearly all SPAS included in the sample require the applicant to gather a large set of documents before conducting the mandatory social inquiry. Further reasons for blockages during the intake phase relate to the lack of support 2 provided by authorities, age when the disease was officially ascertained, lack of adapted communication, and lack of awareness about the existence of and ability to apply for a disability certificate and its associated benefit-service package. Thus, not only does the initial information (discussed in Chapter 2) need improvement, but so does the information and communication during the intake and registration phase. Applicants with sensory or intellectual disabilities reportedly lack accessible information, while information in accessible formats (easy-to-understand language, Braille, mime-gesture language, tactile, etc.) is often unavailable. Third, rural public social services particularly need support to build capacity by developing human resources management. The main factors that influence the 3 quality of current social inquiries relate mainly to SPAS understaffing and insufficient training. Additionally, to more accurately reflect the social part of the disability assessment, the framework model of social inquiry needs to be improved. Finally, in Romania, the uptake and registration phase is much more burdensome than in many other countries. International experience shows that most countries have implemented various measures to minimize the number of papers an applicant should submit. In more advanced administrative systems, a person can register electronically for the disability assessment and medical documents are pooled 4 from an e-health system, while a social inquiry (if needed) is obtained through institutional protocols with no involvement, cost, or effort required on the part of the applicant. Romania should strive for this by rethinking the administrative processes to simplify access while avoiding duplication and rent-seeking opportunities. Thus, the needs of persons with disabilities as applicants in the disability assessment system should be carefully addressed to ensure equal access to intake and registration, and thus improve the disability assessment system’s overall efficacy. Chapter 3 I 95 96 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 4. The disability assessment in Romania173 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE This chapter reviews the third phase of the delivery and child protection of the counties and local chain of Romania’s disability assessment system, districts of Bucharest.” that which classifies an applicant’s degree and type In most countries, the disability assessment of deficiency. This chapter describes and analyzes (core phase 3) and disability determination (core the processes, tools used, and documentation phase 4) are one step: Assessors carry out the required by the Service for the Assessment of assessment and propose the type and degree of Adults with Disabilities (SECPAH). Article 88 of disability and the validity of the certificate, and Law no. 448/2006 on protecting and promoting the then an official from the same agency reviews the rights of persons with disabilities, republished with proposal and makes a formal decision. Romania, subsequent amendments and supplements, states however, has separate processes for assessment that “in order to carry out the duties of the assessment and determination. SECPAH (a structure within the commission, a service for the comprehensive DGASPC) conducts the assessment for classifying assessment of adults with disabilities shall be set up the degree of deficiency, while the Commission within the general directorates for social assistance for Assessing Adults with Disabilities (CEPAH), 173 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. Chapter 4 I 97 a structure under the County Council, decides reviews the assessment tools used for each of the the classification (determination) of the disability six mandatory areas of assessment (social, medical, degree. Thus, unlike most countries, Romania’s psychological, vocational or professional skills, assessment of the disability degree is a two-stage educational level, and social integration level and process—the assessment itself and the decision- skills), according to current regulations.174 These making. This chapter focuses on the first step of this tools are reviewed according to widely recognized process. scientific requirements for disability assessment, Along with a general description of the but particularly according to the World Health comprehensive assessment stages and the required Organization’s (WHO) International Classification documentation, this chapter also identifies of Functioning, Disability and Health (ICF). The problems, as reported by SECPAH specialists in chapter concludes with a general summary of the interviews, focus groups, and the opinion survey assessment process and the tools SECPAH uses for Q2B, as well as by SECPAH chiefs who answered the the comprehensive disability assessment. institutional survey Q2A. In addition, the chapter 4.1. The steps of the comprehensive disability assessment The regulatory documents governing the SECPAH 4.1.1. Registering and Verifying Files with assessment procedure are GD no. 430/2008 and SECPAH Order no. 2298/2012.175 SECPAH is a service within the General Directorate of Social Assistance and The third core implementation phase - disability Child Protection (DGASPC) and operates in each of assessment starts once the second core phase, in the 41 county municipalities in the country, as well which the file is prepared, submitted, and registered, as in the 6 districts of Bucharest. is completed. The steps of intake and registration SECPAH’s duties are regulated by Art. 50 of GD is discussed in detail in Chapter 3. Once the files no. 268/2007 and Art. 5 of Order no. 2298/2012. As arrive at SECPAH, a specialist checks them for stated in Section 1.2.1, SECPAH is responsible for: completeness, based on the list provided in Art. 6 of (i) carrying out the comprehensive assessment/ GD no. 430/2008.176 In most counties,177 this initial reassessment of an adult with disabilities, either at check is conducted by a SECPAH representative SECPAH offices or the person’s home; (ii) drawing who is trained to assess the completeness of up the comprehensive assessment report for each the documents, including regarding medical person who is assessed; (iii) recommending whether data, as shown in Section 3.4.2. When the file is or not to classify a person as with disabilities (or to registered with SECPAH, the applicant receives maintain the classification), as well as drafting his/ an appointment for the assessment interview.178 her Individual Social Rehabilitation and Integration SECPAH specialists then use the documents during Program (PIRIS); (iv) endorsing the Individual the comprehensive assessment phase, when they Service Plan (PIS), drawn up as required by the may request additional paraclinical investigations case manager; (v) assessing whether conditions or medical reports, if necessary. After SECPAH have been fulfilled for certification as a professional completes the assessment, the whole package of personal assistant, to draw up the comprehensive information is forwarded to CEPAH, which decides assessment report and make recommendations to on classification of the disability degree. CEPAH; (vi) recommending protective measures for the adult with disabilities, in accordance with the law; and (vii) performing any other duties provided for by law. 174 GD no. 268/2007, Art. 48. 175 Order no. 2298/2012 on the approval of the framework procedure for the assessment of adults in order to classify the degree and type of handicap. 176 The documents required in the application file are listed in Section 3.4.2. 177 In 28 counties and 3 districts of Bucharest. 178 The analysis of practices related to file registration and verification is available in subchapter 3.4. 98 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 4.1.2 The Comprehensive Assessment institutional survey Q2A. There are, however, some Process for Adults SECPAHs that have employees with specializations other than those mentioned, or even employees who In accordance with GD no. 430/2008 and Order do not meet the legal educational requirements. no. 2298/2012, SECPAH carries out the assessment Most SECPAH comprehensive assessment services according to two basic criteria: the applicant’s state consist of a specialized medical practitioner, a of health and his/her level of functioning. To this social worker, and a psychologist, and sometimes end, the legislation stipulates179 that SECPAH must an educational psychologist, with a total of 5–7 be composed of at least the following specialists: a members, but with variations between 2 and 22 social worker with higher education, a specialized specialists. Even the SECPAH chiefs have one of medical practitioner, a psychologist, an educational the specializations provisioned by the law only in psychologist, a physiotherapist, an education 22 out of 37 SECPAH in the sample (Figure 15). A instructor, and a reintegration teacher. detailed analysis of the human resources available In practice, no county has all these specialists, to SECPAH is available in subchapter 9.2. according to data reported by SECPAH in the Figure 15: Specializations of the SECPAH chiefs (number of counties) 10 6 6 4 4 2 2 2 1 Social Specialized Psychologist Educational Legal Public Sociologist Economist worker medical psychologist adviser administration with higher practitioner and legal sciences education Specializations in law Other specializations than those mentioned in the law Non-response Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 33 counties and 4 districts of Bucharest, January-February 2021. Note: Two SECPAH (BN and SJ) in the sample did not have a head at the time of the field research. SECPAH specialists work in multidisciplinary within the focus groups, SECPAH specialists said teams, but only 12 (out of 36) SECPAHs that took that the meetings are ad hoc “meetings among part in the Q2A institutional survey reported colleagues,”180 without a clearly defined schedule or having a specific approved procedure on how to agenda. Moreover, in some counties, “we wouldn’t organize and work in multidisciplinary teams even have a place where we could all sit and discuss (see Figure 16). However, most SECPAHs create or organize together; everyone is working on the teams of three specialists. Only 8 (out of 36) files assigned to them, by their profession.”181 SECPAHs have multidisciplinary teams with Mandatory multidisciplinary team meetings a fixed membership. In the other counties and are held in just nine counties, for situations such as districts of Bucharest, specializations are combined disputes or different points of view regarding the to form multidisciplinary teams depending on proposals in the comprehensive assessment report; the particularities of the case (18 counties) or the unclear, confusing, or inconsistent documents on specialists available (9 counties). file; assessment of persons with mental disorders Most SECPAH chiefs (21 out of 36) report that (dementia, autism, schizophrenia); emergency multidisciplinary teams hold daily consultation situations, such as assessment of persons brought in meetings on cases and identify the most appropriate from prisons or hospitals; and persons with severe recommendations (see Figure 16). However, behavioral disorders.182 179 Order no. 2298/2012, Art. 5, respectively GD no. 268/2007. Art. 49. 180 To clarify, only 6 (out of 36) SECPAH chiefs gave an estimate of the average time allocated to daily multidisciplinary team meetings (between 15 and 90 minutes), while the others answered “as long as it takes.” 181 Focus group SECPAH 1. 182 Quotes from Q2A questionnaires filled in by SECPAH chiefs. Chapter 4 I 99 Figure 16: Multidisciplinary teamwork and interaction between assessors and applicants, according to SECPAH chiefs (number of counties) SECPAH MULTIDISCIPLINARY TEAMS INTERACTION BETWEEN APPLICANTS AND ASSESSORS FREQUENCY of the multidisciplinary team meetings TIME REQUIRED (no. of days) from the time of registration with SECPAH and until the end of the evaluation interview, when the writing of the REC begins Daily 21 We have never measured them 20 rigorously Whenever needed, not on a 13 schedule Yes, we measured them 13 rigorously, but before Once a week 2 Yes, we measured them rigorously 3 recently HOW THE EVALUATION INTERACTION TAKES PLACE HOW SPECIALIZATIONS are combined within teams It depends on the case 9 8 As a short and structured discussion Teams with a fixed membership in which the evaluator asks precise Depending on the affinities questions and fills in a computer 4 1 form the answers received between team members Depending on the specialists 9 available As a free discussion, in which the 18 evaluator asks questions and takes Depending on the particularities of 23 the case notes, and the person answers freely, expresses his opinions, says his problems, fears, plans SPECIFIC PROCEDURE on how to organize and work in multidisciplinary teams HOW THE EVALUATION INTERACTION IS ORGANIZED No 24 In another way 1 Yes 12 Rather, depending on the 0 preferences of the applicant Rather, depending on the availability 8 Number of MEMBERS PER TEAM, most often of specialists After a succession pattern 3 of evaluators’ with certain 27 6-9 specialists specializations (the doctor starts, the psychologist continues, followed by 5 8 the social worker, etc.) 4 WHO PARTICIPATES IN THE INTERACTION 7 Only the applicant and the 9 3 15 assessors Caregiver/representative with 27 2 specialists 3 applicant and evaluators 0 36 0 36 Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 32 counties and 4 districts of Bucharest, January-February 2021. According to results of the institutional survey 72 percent of SECPAH specialists report that the Q2A, there is no uniform procedure by which person usually interacts with a team of specialists SECPAH teams should conduct comprehensive simultaneously, while 18 percent report that the assessments, and procedures vary from county to interaction is sequential, and 10 percent respond county in several respects. In some counties, the that the interaction takes place in other ways; applicant is seen individually by each specialist for example, in a dedicated space, the applicant (physician, psychologist, social worker, educational interacts with one specialist who covers all areas psychologist) and is interviewed or assessed of the assessment; or the applicant enters an office according to standardized (psychological) testing with other applicants, and multiple specialist- instruments. In other counties, the person is applicant interactions take place simultaneously in interviewed collectively by a team of specialists. that office, wherein the specialist covers all areas of As the analysis on workload in Section 9.2.1 shows, the assessment.183 183 Opinion survey Q2B: Practices and experiences of specialists working within SECPAH (N=182), from 39 counties and 6 districts of Bucharest, January–February 2021. 100 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM However, Figure 16 shows that the majority answers on a computer form. of SECPAH chiefs (27 out of 36) claim that the All SECPAH chiefs in the counties that took part interaction between assessors and applicant is in the Q2A institutional survey reported that they organized according to a pattern of sequencing of had no difficulty meeting the statutory term (of no assessors by specialization, with all team members more than 60 days from the date of file registration participating (e.g., the social worker starts, the at SECPAH) to complete the comprehensive psychologist continues, the physician follows next, assessment of adult applicants requiring a etc.). Usually, according to 23 out of 36 SECPAH certificate, as shown in Quote 4.1.184 Out of the 36 chiefs, the interaction takes place as a free discussion, SECPAHs, just 20 have ever conducted a rigorous where the assessor asks questions and takes notes, measurement of the time it takes for an applicant and the person responds, expresses their opinions, to register their application with SECPAH to the shares problems, fears, plans, etc. However, the completion of the interaction, when drafting the other SECPAHs, predominantly those with a large comprehensive assessment report begins (see number of applications per month, organize the Figure 16). Most SECPAH chiefs estimated that interactions according to specialists’ availability, on average, around 30 days are needed for the and conducts them as short, structured discussions assessment process, both for assessments carried between two people who sit on opposite sides of out at SECPAH offices and those at applicants’ a desk, with a computer and files between them; homes. the assessor asks precise questions and records the “At service level, there are on average 600 assessment files in a month, an average of 30 files/working day, 2 comprehensive assessment teams are organized, which means 15 files per team, with 30 minutes of assessment time allocated to each person. For a good record of the appointments/invitations there is a register in which the date 4.1 and time of the interview is filled in. It was found that the period of 30 calendar days from the date of submission of the request for assessment is sufficient to examine the file and complete it. The same period of 20 working days is also provided for by Order 2298/2012 in case the person is invited for reassessment. Also, if the person with disabilities does not complete the file by the date of the appointment, he or she has the possibility of another 30 days, until the expiry of the maximum 60 days. There is a possibility that, although the file is complete, the person may not be able to attend on the assessment date due to environmental, climatic, social, medical, etc. factors, which allows SECPAH, together with the person with disabilities, to reschedule the interview appointment.” (SECPAH chief, quoted from a Q2A questionnaire) Usually, SECPAH carries out the comprehensive different buildings and institutions, making the assessment at its premises. On the day of the assessment process difficult for the applicant. assessment, the applicant must be present, possibly For applicants who cannot travel,185 based on accompanied by a legal representative or personal the medical referral letter and the social inquiry, assistant (see Figure 16). Most SECPAHs highlight the comprehensive assessment is carried out at the problem of inadequate premises for both the their home/residence, as per Order no. 2298/2012. assessment process and for archiving and storing These types of assessments account for about 12 documents. In the absence of dedicated premises, percent of all adult applicants, on average, in the in most counties, SECPAH team members conduct pre-COVID-19 period, decreasing to 6 percent in interviews with applicants in their own offices. In 2020.186 Home assessments are carried out based on some counties, SECPAH members are located in 184 Timeframe as laid down in Order no. 2298/2012, Annex, Art. 11. 185 Being unable to travel means that a person is unable to leave their home without difficulty, and, generally does not leave their home. This is usually due to advanced age or illness. These people are eligible to receive special services, including assessment at home. 186 In 2019, the share of the assessment conducted at home in the total assessments ranged from zero to 35 percent – maxim value recorded in the districts of Bucharest, where SECPAH also acts as SPAS. The standard deviation, however, was lower than average, i.e., 10 percent. In 2020, the number of SECPAHs not conducting assessments at home increased from 2, in 2019, to 4. Disparities in conducting assessments between counties also increased nationally. Chapter 4 I 101 a schedule, which can cover a period of 1-3 days to face interviews (93.9 percent). Only 5 SECPAHs Direct interaction between an applicant and the 4.1.4. Transferring Application Files from 2 months.187 In 19 counties, SECPAHs only conduct were conducting a few assessments solely based SECPAH team takes, on average, 15–20 minutes, SECPAH to CEPAH, and Information home assessments on certain days of the week; in on paperwork, possibly through a combination of regardless of whether the assessment is carried Management the other 17 counties, they are conducted daily. documents analysis and telephone, WhatsApp, or out at the SECPAH office or the applicant’s home. Almost all SECPAHs use teams of 2-3 specialists Skype interviews. But in the context of the COVID-19 However, for home assessments, the average There is no management information system at for the home assessment, with a physician, social pandemic, there has been a dramatic change in how round trip takes approximately 107 minutes.189 SECPAH level. Most activities related to disability worker, and psychologist forming the typical team. the comprehensive assessment is carried out. Thus, Accordingly, the interview duration increases from assessment are paper-based. The use of technology DGASPC provides transport of the multidisciplinary in November 2020, only 30.9 percent of assessments 15–20 minutes to 120–130 minutes, on average, (phone, email) to communicate with applicants teams to the applicant’s home/residence. were face-to-face. Most SECPAHs conducted the which significantly reduces the number of files that increased considerably in 2020 due to the COVID-19 As shown in Table 8 in November 2019 (or a majority of the assessments based on documents can be assessed during a work day. pandemic, but at the national level, the process typical pre-COVID-19 month), the majority of alone, possibly through a combination of paperwork still relies heavily on face-to-face interactions and the disability assessments were based on face-to- and telephone, WhatsApp, or Skype interviews.188 4.1.3. Adapting the Assessment Process for applicants’ repeated visits to various counters. “Hard to Reach” Population All SECPAHs keep copies of the application files, Table 8: Methods for conducting the comprehensive disability assessment but only a few have transferred and stored these In all counties, the comprehensive assessment documents electronically,190 while the others only November November procedure has some adaptations, depending store them on paper. In most counties, SECPAH 2019 2020 on disability type. However, in interviews with (either alone or in cooperation with the CEPAH people with disabilities and NGO representatives, secretariat) is also in charge of file management Average number of files assessed at SECPAH - Total, of which involved: 506 418 the lack of tailored communication for vulnerable and storage, which increases the team’s workload a. face-to-face interaction/interview 93.9 % 30.9 % groups was mentioned as a barrier within the in terms of file-handling activities (from registry to b. assessment based on documents only (no interview) 5.5 % 24.6 % comprehensive assessment process. Moreover, most assessment, from assessment to CEPAH secretariat, c. assessment carried out through a combination of document analysis and interviews 0.8 % 41.6 % SECPAH chiefs reported in the institutional survey from commission to storage, within the archive, by telephone, WhatsApp, or Skype Q2A that the service has not developed specific etc.). procedures or sections/chapters of the general Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities procedure to analyze or assess files submitted by (SECPAH) in 27 counties and 4 districts of Bucharest, January–February 2021. persons from groups exposed to various social risks, as shown in Figure 17. Several counties (23) have Data reported by SECPAH chiefs in 30 counties However, this varies between a minimum of 5 made adjustments only for immobilized persons, as and 4 districts of Bucharest (in Q2A), for November applicants/working day (in IL) and a maximum of required by the law. 2020, show that a SECPAH assesses, on average, around 40 applicants/working day (in IS). about 21 applicants per county per work day. 187 According to SECPAH chiefs, of the 36 SECPAHs in the Q2A sample, the planning for field activities covers a period of 1-3 days in 189 With a minimum of 7 minutes, a maximum of 300 minutes and a standard deviation of 84 minutes. Institutional study Q2A: Factual 4 counties, one week in 9 counties, two weeks in other 9 counties, one month in 8 counties or more in 2 counties, and 4 counties do data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 25 not conduct assessments at home. counties and 2 districts of Bucharest, January–February 2021. 188 See also Section 9.2.1, analysis of SECPAH staff workload. 190 One district in Bucharest and 7 counties. Figure 17: Number of SECPAH that adapted the comprehensive assessment procedure for vulnerable groups (number of counties) Are there specific procedures or sections/ chapters of the general procedure for the 5 3 1 1 1 1 23 0 analysis and assessment of the files submitted for the classification of type and degree of disability, which concern the following groups …? (UNCRPD, Art. 5, 12) People in social institutions Persons hospitalized in Homeless people Persons in prisons Persons under Persons with a low level Immobilized persons Young people for adults (centers, psychiatric hospitals trusteeship/guardianship of education (8 classes 18–26 years old sheltered housing) or less) Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 32 counties and 4 districts of Bucharest, January-February 2021. 102 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 4 I 103 One district in Bucharest and 22 counties benefit would be very difficult to carry out such an analysis from the use of disability assessment software, using existing data. namely SeeSoft D-Smart191 or Assys. Versions of The software is used in the National Electronic this software vary from county to county, as do the Register of Persons with Disabilities. On the one number and type of facilities and modules available hand, the lack of harmonized data collection, at (smaller budget counties have purchased more the level of all Romanian counties, hinders the limited versions). The software includes modules use of comparative statistics for disability degree for each of the six mandatory assessment areas. assessment. Limited and uneven use of software The reporting module includes the comprehensive (such as D-SMART) hinders Romania’s ability assessment report, the PIS, and the PIRIS, which to conduct qualitative analyses of the service are generated automatically. However, only some system for people with disabilities. On the other counties have purchased the reporting module. hand, the quarterly statistical bulletins published Data is entered manually into the software, and on the MMPS192 website do not exploit the full varies from county to county. The data least often range of information recorded in the disability recorded in the assessment software relates to assessment process. For example, the number of applicants’ future plans, fears, hopes, or desires. people who underwent a vocational assessment Only five counties enter such information into and were referred to county employment services the software, and the available data is randomly is not highlighted.193 A detailed analysis of the data selected (depending on the assessor) and spread management and information system at SECPAH across sections of the existing framework model. level is provided in Chapter 9, Section 9.2.4. This data is not analyzed in any county, and it 4.2. The disability assessment procedure in Romania In Romania, the comprehensive assessment of of disability (or a chapter/paragraph in the general adults for deficiency degree classification comprises procedure). However, only 24 SECPAHs have an six mandatory areas of assessment: social, medical, assessment procedure that contains all stages and psychological, vocational or professional skills, areas of assessment, or one that is complemented by level of education, and social integration level other documents on specific procedures, assessment and skills.194 SECPAH specialists use specific tools, methodologies, etc. assessment tools for each of these areas, which In fact, a complete assessment covering all allow the assessment of physical, functional, and mandatory areas, according to the legislation, is performance parameters as specified in Joint Order available in 23 counties and 3 districts of Bucharest. no. 762/1.992/2007.195 This section analyzes these In the other counties, the comprehensive assessment tools, even if some have a minimal or hard-to- covers only 5 or 4 areas (in 4 counties and 1 district determine impact on the assessment decision. in Bucharest, respectively in 5 counties). Figure 18 shows that out of the six mandatory areas 4.2.1. Areas of Comprehensive Disability of assessment, only three—social, medical, and Assessment psychological—are carried out by all SECPAHs. The other three types of assessment—for vocational With one exception, all 36 SECPAHs that took part or professional skills, educational level, and social in the institutional study Q2A have an approved integration level and skills—are only available procedure for reviewing and assessing files in some counties (in 29, 30, and 34 counties, submitted for the classification of degree and type respectively). 191 SINGLE MANAGEMENT, ASSESSMENT AND REPORTING TOOL FOR PEOPLE WITH DISABILITIES, version 7.21.01.15(301/2140). 192 MMPS, quarterly statistical bulletin, http://mmuncii.ro/j33/index.php/ro/transparenta/statistici/buletin-statistic. 193 ANOFM collects information on people who have benefited from professional orientation services. 194 GD no. 268/2007, Art. 48, respectively Order no. 2298/2012. Art. 4. 195 Joint Order of the Minister of Labor, Family and Equal Opportunities and the Minister of Public Health no. 762/1.992/2007 approving the medical-psychosocial criteria based on which the degree of disability is determined, with subsequent amendments and supplements. 104 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 18: Areas of comprehensive disability assessment, according to SECPAH chiefs (number of counties) 35 36 36 36 34 29 30 24 There is an The procedure Social Medical Psychological Vocational Assessment Assessment of approved contains all assessment assessment assessment assessment of the level of social skills and procedure for the stages education integration examination and areas of and disability assessment assessment Areas of assessment carried out by SECPAH Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 32 counties and 4 districts of Bucharest, January-February 2021. 4.2.2. Medical Assessment A specialized medical practitioner from SECPAH In most cases, the assessment of the degree carries out the medical assessment for nearly all of deficiency/impairment/handicap takes applicants.196 The physician assesses the applicant’s into account only one of the applicant’s health state of health based on the documents on file, and problems. In cases of co-morbidities—where the if clarifications are needed, conducts an interview applicant has more than one, unrelated health or requests additional medical documentation. problem (e.g., leg amputation and major depressive There is a specific approved procedure for medical disorder)—only one health issue is considered for assessment (or a chapter/paragraph in the general medical assessment purposes: the one for which procedure) in 34 of the 36 SECPAHs studied. In all there is medical documentation in the applicant’s counties, the main data197 on which the medical file (or if that deficiency is taken into account in the assessment is based comes from the medical conditions mentioned in the medical criteria). On documents on file, as well as from interviews with the one hand, this goes against the key principles of the applicant or their family/representative (in 30 ICF, as it is very common for people to have two or of the 36 SECPAHs in the sample). In addition, 10 more health problems at the same time, and for older SECPAH chiefs reported that they also have a tool people, co-morbidity is a very common situation. (or tools) with which to analyze the data available On the other hand, according to regulations, the for medical assessment, mentioning documentary/ medical assessment must be carried out based on file/referral or standard tools/scales such as the medical documents on file.198 The problem is MMSE, ADL, IADL, Barthel index, GAFS, Romberg, that, in many cases, applicants are not informed Optotype, etc. and/or cannot afford to obtain the necessary 196 Out of 36 SECPAHs participating in the institutional survey Q2A, 2 SECPAH chiefs reported that the medical assessment is provided by specialized medical practitioners only in some cases, while in the other 34 counties this is always the case, according to GD no. 268/2007, Art. 48(b). 197 In accordance with the ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report, the relevant medical assessment data refers to: (i) main diagnosis with stage of progression; (ii) onset of disease (date and supporting document); (iii) associated diagnoses, each with stage of progression; (iv) imaging investigations; (v) complications; (vi) functional parameters, e.g., AV, VEMS, FMS; (vii) treatment followed; and (viii) recovery programs, other. 198 The ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report states that the references for the medical assessment can be identified in: the standard medical referral letter from the family physician (only in the case of the first presentation to SECPAH); medical documents according to Art. 6 of GD no. 430/2008 (specialized medical practitioner report, hospital discharge report, etc.); paraclinical investigations requested by SECPAH both in the analysis phase of the file, and in the assessment phase itself; social inquiry—template in Annex 6 to GD no. 430/2008—information from section Assessment of the person’s sensory and psycho-emotional status. Chapter 4 I 105 documents for each of their conditions. As Section physicians interacting with the specialized medical 3.2 demonstrates, there are three main problems practitioners who prepared the medical reports related to obtaining medical and psychological on file, nor does it involve SECPAH working with documents. The first concerns the financial and specialists from outside SECPAH. Instead, it consists geographical accessibility of specialized health of requesting that the applicant obtain additional services. The second relates to suspected fraud and medical documents or paraclinical investigations. how it is handled. The third relates to the limited This practice makes it more difficult for people with knowledge of many health care professionals about disabilities to obtain a certificate. the criteria for disability degree classification. As a consequence of inconsistencies in medical SECPAH physicians who participated in focus documents, in 9.4 percent of all files, on average, the groups or the national survey mention frequent assessment in the specialized medical practitioner’s situations where medical documents submitted report does not correspond to the SECPAH on file are contradictory, unclear, or incomplete. physician’s assessment, as estimated by SECPAH SECPAH chiefs provided similar data in the chiefs (in Q2A).201 At one end, in 5 counties and 1 institutional survey Q2A, namely: district of Bucharest, SECPAH chiefs report that they have not recorded any such cases of mismatch. • 29 out of 36 sampled SECPAHs report At the opposite end, SECPAHs in 5 other counties inconsistencies in medical records. and 1 district in Bucharest give estimates of between • The average share of files containing medical 20 percent and 45 percent of total files assessed. documents with vague, unclear, or incomplete However, only 10 SECPAHs have developed conclusions/diagnoses is 9.5 percent of all files a standardized procedure to deal with situations assessed in November 2020, with considerable where discrepancies in medical assessment arise variation at county level, ranging from virtually and the actions taken by SECPAH physicians differ. zero (in 4 counties) to a peak of 30 percent (in 3 When there is a mismatch, SECPAH specialists counties).199 typically request the file be completed with results • The average share of files containing medical of paraclinical investigations, or that a new medical documents with conflicting conclusions/ report be produced by any health care facility/ diagnoses is 7.6 percent of all files assessed in physician of the applicant’s choice (in 29 counties), November 2020, with considerable variation at or that additional information be obtained through county level, ranging from virtually zero (in 3 an in-depth interview with the applicant and/ counties) to a peak of 40 percent (in 1 county).200 or guardians/caregivers (in 22 counties). Fewer • The most common of the above occur in cases SECPAHs (in 12 counties) require additional of neurological and ophthalmological disorders, medical tests and/or a new report from a specific dementia, stroke sequelae, psychiatric disorders health care facility/physician, usually a clinic or and intellectual impairment. university hospital. This practice was mentioned in some interviews with people with disabilities However, only 15 SECPAHs (out of the 36 and NGOs as a requirement that puts significant included in Q2A) have a specific approved pressure on the applicant and his/her family, which procedure (or a paragraph/chapter in the general is difficult, especially for people who live far from procedure) on these situations. The prevailing university centers. practice in such situations does not involve SECPAH “I went and explained to the head of the [assessment] commission that I had made 4.2 no complaint about these people and that it was a criminal offence what had happened, that they had used my name. However, the persons reported were sent for reassessment to a teaching clinic in Bucharest or in Târgu Mureș, now in the midst of a pandemic. They subjected people to expenses and, above all, to life and death risks based on false claims, as I had already told them. Following reassessment, these people were still given profound disability with the right to have an attendant... These are abuses that should be stopped.” (Interview with a national NGO, Bucharest) 199 Standard deviation of 9.5 percent. Estimates for 29 counties and 3 districts of Bucharest. 200 Standard deviation of 7.9 percent. Estimates for 29 counties and 3 districts of Bucharest. 201 Estimates for November 2020, for 28 counties and 4 districts of Bucharest. 106 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 19: Share of files with mismatch between the assessment in the specialized medical practitioner’s report and the SECPAH physician’s assessment, based on the documents on file, estimates of SECPAH chiefs, November 2020 (% of total files assessed) 45 40 25 25 25 20 National average 9.4 15 10 10 10 10 10 9 5 5 5 5 5 5 2 3 3 3 3 0 1 1 TM VS BR SV OT SM B SJ DJ TR VL HD NT B_ MM GR CT CJ MH MS BV AG BH GL B_ BC 6 SECPAHs S3 S6 Share at the county level of files with mismatch, as estimated by SECPAH chiefs National average Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 28 counties and 4 districts of Bucharest, January-February 2021. There are also counties with numerous for the majority of applicants, as shown in Figure suspicions about the accuracy of medical documents 20.202 In fact, out of the total number of files or suspicioned fraud, a subject covered extensively assessed in a month, the share of files containing a in Section 3.2: Obtaining medical documents. psychological assessment report/review is about However, on a scale of 1 (none) to 10 (total), the 36 percent, the majority of which (34 percent) being medical documents in the files allow for an accurate carried out by a clinical psychologist.203 There is a assessment of impairment to body structures and chapter/paragraph in the general procedure (or, functions, at an average level of 8, as well as a less frequently, a specific approved procedure) for comprehensive and sufficiently detailed assessment psychological assessment in 32 of the 36 SECPAHs of the person’s activity limitations, at an average studied (Figure 20). level of 7.7, according to the Q2B opinion survey In accordance with the regulations in force,204 the with SECPAH specialists (see Annex 5. Table 1). main data205 on which the psychological assessment is based comes from the documents on file, in all 4.2.3. Psychological Assessment counties, and from interviews with the applicant or his/her family/representative (in 33, respectively In almost all SECPAHs studied, clinical 30, of the 36 SECPAHs in the sample). In addition, 25 psychologists conduct the psychological assessment 202 SECPAH chiefs in all counties and districts of Bucharest reported that the psychological assessment is provided by psychologists (even if some of them are not clinical psychologists), in accordance with GD no. 268/2007, Art. 48(c). 203 Estimates for November 2020, for 21 counties and 4 districts of Bucharest. The data refers to psychological assessment reports/ reviews submitted by the applicant on file, conducted by SECPAH/SEC or both. 204 The ANPD instruction of 3.12.2018, on how to complete the comprehensive assessment report states that the references for the psychological assessment can be identified in: records and/or certificates/assessments /reviews/recommendations issued by the psychologists with the right to practice; medical documents; social inquiry—template in Annex 6 to GD no. 430/2008—information from section Assessment of the person’s sensory and psycho-emotional status (behavioral problems). 205 In accordance with the ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report, the relevant psychological assessment data refers to: (i) onset of the condition—date and document of proof; (ii) course of the condition (e.g., frequency of the episodes of decompensation, autolytic attempts); (iii) behavioral problems (aggression, self-harm, exaggerated actions, etc.); and (iv) functional parameters (e.g., as evidenced by GAFS, MMSE scores, etc.). Chapter 4 I 107 SECPAHs use standard psychological assessment the SECPAH psychologist may carry out his/ tools/tests, primarily the MMSE (Standardized her own assessment or may request a second Clinical Examination for Cognitive Impairment), external assessment. Because of the high cost of the and the Global Assessment of Functioning Scale psychological assessment provided by a licensed (GAF/EGF).206 Some counties use tests of standard clinical psychologist, some counties accept an activities of daily living (ADLs) and instrumental assessment conducted at the County Hospital or activities of daily living (IADLs), clinical scales County Mental Health Center.208 that assess the level of functioning, i.e., the ability For children with disabilities, SECC to perform usual daily activities. The psychological psychologists state that they cannot always assessment is carried out by reference to the obtain sufficient data from the child psychological provisions of the medical-psychosocial criteria assessment form completed by the clinical (Chapter 1 on mental functions). psychologist, and the recommended tools for As in the case of the medical assessment, completing this data (e.g., neuropsychological SECPAH chiefs report an average of 9.2 percent assessment battery for children aged 3–12 years, of all cases in which the psychological assessment validated on the Romanian population) can only be has vague, unclear, or incomplete conclusions/ used by certified psychologists. All psychologists diagnoses. There is substantial variation between interviewed (SECPAH and SECC) mentioned counties, ranging from virtually zero (in 11 the need for a unified, specific, and detailed counties) to a peak of 75 percent (in 1 county).207 psychological assessment procedure that can be However, only 12 SECPAHs have developed a applied to both children and adults, even if the procedure to handle such situations. In practice, assessment tools are different. Figure 20: Psychological assessment, according to SECPAH chiefs (number of counties) Intruments/standard test for psychological assessment 25 Data source Documents on file 36 Interview with the applicant 33 Interview with the applicant’s caregiver/representative 30 Yes, a specific procedure (distinct document) 4 Procedure Yes, section/chapter in the general assessment procedure 28 None 4 Yes, in all cases 24 psychologists? by clinical Provided Yes, in most cases 10 Yes, in some cases 1 No 1 Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 32 counties and 4 districts of Bucharest, January-February 2021. Therefore, on average, for 17.5 percent of all files counties with an incidence of over 20 percent, 4 with a clinical psychological assessment report/ counties with over 40 percent, and 1 county with 65 review, SECPAH chiefs report (in Q2A) mismatches percent. However, only 13 (out of the 36) SECPAHs between the psychologist’s assessment (external have an approved procedure (or a paragraph in the to SECPAH) and the SECPAH psychologist’s general procedure) for such situations. The most assessment.209 The share of files with mismatched common conditions in which such mismatches psychological assessment varies significantly, occur are mental and intellectual disabilities. between virtually zero (in 3 counties) and 11 206 Clinical scale that measures the impact of the psychiatric disorders on a person’s life and daily functioning abilities, for social behavioral functions. 207 Standard deviation of 17.3 percent. Estimates for November 2020, for 30 counties and 3 districts of Bucharest. 208 See also Section 3.2 on obtaining the medical and psychological documents. 209 Standard deviation of 17.6 percent. Estimates for November 2020, for 24 counties and 3 districts of Bucharest. 108 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM In a comprehensive assessment that takes into family/representative (in 32 of the 36 SECPAHs account the dependency approach, measured by in the sample).212 The social inquiry is drawn up daily activities (the assessment of the person’s by the social worker or person in charge of social degree of autonomy/dependence), the available assistance at SPAS level. tools are still limited for adequately assessing According to the SPAS survey (Q1), in all people with chronic mental health problems. types of localities, most social inquires follow the Indeed, some people with this condition can carry standard framework template for adults or the out everyday activities, but may require ongoing standard framework template for ICF-assessed supervision, which is not yet well-reflected in the environmental factors for children.213 The social assessment tools. In the classic medical approach, it inquiry framework template for adults includes is relatively easier, because the person is diagnosed a wide variety of data on the applicant and the with a chronic mental illness and the ability or applicant’s legal representative; a section on inability to work is assessed. However, in a more autonomy highlighting the person’s functional comprehensive approach it becomes much more status (daily activities, independent self-care difficult to assess the degree of autonomy or the activities); an assessment of the person’s sensory need for daily support. and psycho-emotional state; and a social analysis Regarding the existence of specific tools of the person’s housing, family, network of friends, used by SECPAH/SECC to assess functioning neighbors, and economic situation. Finally, it from a psychosocial perspective (activities and presents the identified needs and corresponding participation), 90 percent of SECC specialists give offer of services to meet these needs, followed a positive answer, as opposed to 57 percent of by conclusions and recommendations. Much of SECPAH specialists.210 However, in their perception this information is taken from the ICF as specific (in Q2B), the documents on file and the current elements of activities and participation, as well as psychological assessment tools also allow for environmental factors. A comprehensive analysis a satisfactory assessment from a psychosocial of the social inquiries carried out by SPAS can be perspective, with average scores of 7–8, on a scale found in subchapter 3.3. from 1 (none) to 10 (total) (see Annex 5. Table 2). Regarding the completeness and accuracy of the adult social inquiries, SPAS representatives 4.2.4. Social Assessment and SECPAH specialists have different opinions.214 According to SPAS representatives, the social In nearly all SECPAHs (35 out of 36 participating inquiries they have carried out allow for a “good” in Q2A), the social assessment is always provided or “very good” understanding of the applicant’s by social workers (in 29 counties) or in most cases situation in all areas of life.215 In contrast, SECPAH (in 6 counties), as required by GD no. 268/2007, specialists rate the completeness and accuracy of Art. 48(a). There is a chapter/paragraph in the the social inquiry information with average scores general procedure (or, less frequently, a specific between 5 and 7 on data about: approved procedure) for the social assessment in 32 of the 36 SECPAHs studied; the other 4 SECPAHs • dwellings/housing, do not have a procedure for social assessment. In • the applicant’s economic situation, and accordance with the regulations in force,211 the • community services. main data on which the social assessment is based comes from the social inquiry on file, in all counties, and from interviews with the applicant or his/her 210 Source: Q2B: Practices and experiences of specialists working within the Service for the Comprehensive Assessment of Adults with Disabilities (SECPAH, N=157) and children with disabilities (SECC, N=167), in 39 counties and 6 districts of Bucharest, January– February 2021. 211 ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report. 212 Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 32 counties and 4 districts of Bucharest, January–February 2021. 213 According to GD no. 430/2008 (Annex 6), for adults, and to Order no. 1985/1305/5805/2016 (Annex 6), for children. 214 The main factors influencing the quality of current social inquiries mainly relate to insufficient staffing and training of SPAS staff, as well as improvements needed to the framework template. For more details, see Section 3.3.3. 215 With average completeness and accuracy scores between 8 and 9 on a scale of 1 to 10, for all dimensions. SPAS survey with valid responses from 65 SPAS, in 26 counties; not including Bucharest districts as district DGASPCs also act as SPAS, January–February 2021. Chapter 4 I 109 Thus, in existing social inquires, there is rather and environmental factors that could act as a unsatisfactory information on the following:216 the resource (facilitator) or as a barrier (obstacle)— ability of people with disabilities to choose where information that would be useful if it were also they live; the adaptation of their housing (current included in the PIS/PIRIS as recommendations, to and needed); the support needed by people minimize or eliminate barriers and to capitalize on/ with disabilities to obtain housing; the income maximize available resources. and housing facilities of people with disabilities, Valuable information in this regard can including the extra-cost of disability in the person’s be requested and taken from psychological family and its impact on a decent lifestyle; and the assessment reports, which should highlight all financial support needed to enable them to live with aspects related to the resources that a person with their family and community. In terms of services, the disabilities can access, as well as the difficulties data gaps relate to local service provision, people they face in their physical, emotional, social, or with disabilities’ access to existing services, and professional environment, in their daily life. A their needs for access to health care and recovery/ common database, in which different health care rehabilitation services. The overall score on the professionals, members of the multidisciplinary extent to which social inquiry data allows SECPAH team (physician, psychologist, social worker, specialists to accurately assess the applicant’s educational psychologist), based on a specific physical and social environment is below 7 (on a uniform procedure, would complete the necessary scale of 1 to 10) for those conducted by rural SPAS information (both in the assessment reports and in and below 8 for those conducted by urban SPAS. the PIS/PIRIS) would greatly simplify the initiative The SECPAH teams interviewed often mention to improve the comprehensive assessment and conflicting information that they find in the SPAS intervention process. social inquiry, compared to the information presented in the family physician’s referral letter 4.2.5. Vocational or Professional Skills or the specialized medical practitioners’ report Assessment (especially regarding the person’s mobility, cognitive, and visual functions, etc.). Besides, Vocational and professional skills assessment is not also SECPAH teams rarely use tools to assess available in all counties—only in 25 counties and 4 adaptive behavior; for example, the ABAS-II kit, districts of Bucharest, according to SECPAH chiefs’ which is calibrated to the Romanian population.217 reports in the institutional survey Q2A. Therefore, Psychologists interviewed in a separate focus group 7 counties out of those studied do not provide mentioned the need to supplement the test batteries vocational assessment. Among the 29 SECPAHs that used in SECPAH with ones that would allow a report conducting vocational assessment, about 35 better assessment of independent living skills. percent of all files assessed over a month contain a Also, the social inquiry on file rarely includes vocational assessment. However, the discrepancies complete information about the applicant’s living between counties are very pronounced Thus, the context, support network, daily routine, or lifestyle number of files containing a vocational assessment choices. A section that reflects the applicant’s point varies from virtually zero (in 6 counties) to 10–30 of view—including their fears, concerns, how they files per month (in 5 counties and 1 district in would like to live, and what they would like to Bucharest) and between 100 and 522 files per month do in the future—was among the improvements (in 8 counties and 3 districts in Bucharest).218 A few mentioned more frequently in interviews as needed comments are useful: in the social inquiry framework template. At the • First, the vocational assessment is carried out same time, during the social inquiry, it would be only at the request of the person with disabilities, necessary to analyze the difficulties faced by the based on an application that they submit to the person with disabilities, with a focus on contextual mayor’s office of the locality in whose territorial 216 Opinion survey Q2B: Practices and experiences of specialists working within the Service for the Comprehensive Assessment of Adults with Disabilities (SECPAH, N=201), in 39 counties and 6 districts of Bucharest, January-February 2021. 217 As measured by ABAS-II, adaptive skills are defined as: those everyday practical skills that are necessary for the person to function and meet the demands of the environment, including the ability to effectively care for oneself independently, as well as interacting with others. This type of assessment tools is often used in the certification processes of people with disabilities in different countries around the world. 218 A number of 6 SECPAH chiefs did not provide estimates of the number of files containing vocational assessments. Estimates for November 2020, for 25 counties and 4 districts of Bucharest. 110 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM area they have their domicile/residence, or to the DGASPC registry office.219 In the context of this regulation, county practices differ significantly, 4.3 from counties where vocational assessment is not carried out at all, to counties where it is carried out for all applicants aged 18–26 or, in some counties, 18–45 (and not only on request). • Second, vocational assessment results in a professional orientation certificate in very “The person waits until the professional orientation few cases. According to the regulations, after certificate arrives from the CEPAH secretariat. Once SECPAH conducts the vocational assessment, the person obtains the professional orientation the conclusions and recommendations are certificate, he/she is registered with the vocational recorded in the comprehensive assessment guidance and training center of the DGASPC. The report, which is sent to CEPAH, and the person will benefit from assistance and support commission issues the professional orientation services, as well as social mediation services, in order certificate. According to reports from CEPAH to identify training and labor market entry options.” presidents in the institutional survey Q3A, the (CEPAH members, quotes from Q3B questionnaires) majority of CEPAHs do not issue professional orientation certificates.220 • Third, the entire existing institutional Closer cooperation with ANOFM/AJOFM arrangement—SECPAH, CEPAH, county would be very useful, especially considering employment agencies (AJOFM/ALOFM)— that 20 career counseling centers for people with does not provide real support for people with disabilities have been set up within ANOFM, disabilities to integrate into the labor market. where many of the career guidance counselors Thus, after CEPAH decides to issue the have even been trained in sign language so professional orientation certificate, the CEPAH as to communicate with people with hearing secretariat sends it to the applicant, but does not deficiency. send it (automatically) to the public employment • Fourth, CEPAH presidents state that the number services (AJOFM/ALOFM). There are no of professional orientation certificates is low cooperation protocols between DGASPC and either because SECPAHs do not carry out AJOFM/ALOFM for either the assessment or vocational assessment, or because the person’s intake of persons with a professional orientation interest in vocational guidance (or other labor certificate. And within AJOFM/ALOFM, there market services) is not a subject of systematic is no specialist specifically assigned to deal with analysis for specialists (but is considered proven people with disabilities, providing assistance only by an express request submitted to the services to those wishing to enter the labor mayor’s office by the person with disabilities).221 market in order to find and access the most On the other hand, CEPAH members in the suitable services from the existing offer. Instead, opinion survey Q3B pointed out that, with once the person with disabilities receives the limited resources and a significant workload, professional orientation certificate, they can go to the vocational assessment and the issuing of the the AJOFM/ALOFM and must look for training professional orientation certificates represent and labor market entry options on their own, marginal activities because they “overlap with possibly with support from family and friends. the duties of other related institutions,”222 i.e., Only one county (DB) reported an example employment services (AJOFM/ALOFM). of good practice—a vocational guidance and • Fifth, in other countries, vocational assessment is training center set up by the DGASPC, as not part of the disability assessment, but part of reflected in the following quote. the needs assessment of persons with disabilities. 219 Only one county (BC) stated that they issue the professional orientation certificate without an express request made by the person concerned, based on the vocational and professional skills assessment carried out by SECPAH (as part of the comprehensive assessment) and the interest expressed by the person concerned during the interview/interaction with SECPAH. 220 See subchapter 5.3, Section on professional orientation certificate. 221 Institutional study Q3A: Factual data and indicators on the activity of the Assessment Commissions for Adults with Disabilities (CEPAH) in 19 counties and 2 districts of Bucharest, January–February 2021. 222 Member of CEPAH, quoted from a Q3B questionnaire. Chapter 4 I 111 It is therefore carried out by dedicated specialists also not systematically recorded, monitored, using specific tools and methodologies, in order and analyzed to substantiate and improve to identify all the services that can provide employment policies for people with disabilities. appropriate support for persons with disabilities In a few of the studied SECPAHs, vocational to enter the labor market. In Romania, the assessment is always carried out by the types of fact that vocational assessment is carried out specialists stipulated in the legislation,223 as shown superficially (or not at all) is also reflected in the in Figure 21. In most cases, it is carried out by an PIRIS and PIS. Thus, in most cases, the PIRIS educational psychologist, but there are also many and PIS individualized plans do not adequately SECPAHs (10 out of 29) where a significant part reflect the results of the vocational assessment, of the file is assessed by other types of specialists, with the sections on professional (as well as shown in Figure 21, and in some counties even by educational) activities being largely incomplete SECPAH members with other specializations (social (see analysis in Chapter 6). worker or physician; see also Section 9.2.1). • Moreover, the data on vocational assessment and professional orientation certificate are Figure 21: Who performs vocational or professional skills assessment, according to SECPAH chiefs (number of counties) 13 6 6 4 4 2 2 1 1 Not Yes, in some Yes, in most Yes, always Psychologists Psychologists Career Specialist in Assisted cases cases specializing with other guidance vocational Employment in work and specializations counselors assessment Specialist organizational (COR 263506) (COR 263507) Vocational assessment carried out by an educational psychologist, psychology an education instructor, or reintegration teacher (GD no, 268/2007, Vocational assessment carried out by other specialists Art,. 48, letter d) Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 25 counties and 4 districts of Bucharest, January-February 2021. There is a chapter/paragraph in the general file (skills and professional experience acquired in procedure (or, less frequently, a specific approved formal, informal, and non-formal environments) is procedure) for vocational assessment in only 19 of used by only 7 SECPAHs. the 29 SECPAHs that provide such an assessment. Most SECPAHs do not use specific tools for In accordance with the regulations in force,224 the vocational and professional skills assessment; main data225 on which the vocational assessment is each specialist uses their own tools. However, based comes from the social inquiry carried out by DGASPC has the CASPER test batteries, validated SPAS in 23 (out of 29) counties, and especially from on the Romanian population in 2011, and in 2013 interviews with the applicant or his/her family/ specialists from each SECPAH were trained in the representative (in 26 counties). The professional use of these tests. However, in the institutional 223 GD no. 268/2007, Art. 48(d). 224 The ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report states that references for vocational assessment can be identified in: professional qualification sheets/certificates; recommendations issued by authorized institutions; social inquiry—template in Annex 6 to GD no. 430/2008. 225 In accordance with the ANPD instruction of 3.12.2018, on how to complete the comprehensive assessment report, the relevant vocational assessment data refers to: (i) the interests of the person; and (ii) the level of professional qualification. The assessment is aimed at possible recommendations for educational-professional orientation or education reorientation or reskilling contacting the AJOFM for support in finding a job. 112 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM survey Q2A, only 6 SECPAH chiefs reported using assessment, with striking discrepancies between standard vocational assessment tools/tests, and of counties. Thus, the number of files containing these, only two counties mentioned CASPER test an educational assessment varies from virtually batteries. An analysis of the reasons for the under- zero (in 3 counties), to 10–20 files per month (in 3 use of these tools could help improve the way counties), to between 100 and 631 files per month vocational assessment is carried out in the territory. (in 17 counties and 3 districts in Bucharest).228 From a psychosocial perspective, the documents • However, in most counties, SECPAHs conduct in the file and the tools used for vocational education level assessments for more files than assessment allow for a less than satisfactory they do for the vocational assessment. One assessment, both in terms of activity limitations, reason is that the educational level assessment participation restrictions, or environmental factors is often limited to recording the applicant’s that may act as barriers or facilitators in the area of completed level of education. Also, unlike the labor. This is the dominant opinion expressed by vocational assessment, the education level SECPAH specialists in the Q2B survey, as shown by assessment does not have to end with a school available data in Annex 5, Table 3.226 However, the orientation (or educational guidance) certificate results of the vocational assessment are generally or recommendation. Therefore, data on school not included in the final recommendation for orientation certificates are not systematically classification of degree and type of disability. collected. 4.2.6. Assessment of the Education Level • Data on young people (aged 18 and over) with special educational needs (SEN) are also not This is the second type of assessment (after collected. For example, there is no monitoring vocational) that has a minor impact on the final of the status of young people with SEN who recommendation for disability degree and type had an school orientation certificate issued by classification. This is largely because the educational the CJRAE/CMBRAE by the age of 18. Once assessment, together with the vocational assessment, they turn 18 and transition from childhood are usually (in other countries) components of the to adulthood, young people with SEN can no needs assessment of persons with disabilities and longer apply to the CJRAE/CMBRAE, but can not of the disability assessment process. Just as the obtain the educational orientation certificate vocational assessment is intended to shed light on only on request as part of SECPAH’s educational the professional/employment pathway and identify assessment. There are no legal requirements or the best ways to (re)connect the person to the monitoring mechanisms for any of the following labor market, the educational assessment focuses issues: the extent to which young people (aged on identifying the most appropriate services/ 18 and over) with SEN are informed and activities to support the person achieve their full advised to apply for such a certificate; and the potential and educational aspirations. Both types extent to which young people with SEN benefit of assessment are therefore designed to identify the from a special educational needs assessment most appropriate measures to minimize activity and receive an educational and professional limitations and participation restrictions, starting orientation certificate from SECPAH (see also from environmental and personal factors that may analysis in Section 8.4). act as barriers or facilitators. • According to SECPAH specialists, an In Romania, the educational level assessment is educational assessment would be necessary not not available in all counties, just in 27 counties and 3 only for young people with disabilities in pre- districts of Bucharest, according to SECPAH chiefs’ university education, but also for those enrolled reports in the institutional survey Q2A.227 Across in university, with an average score of 3.2 on a these 30 SECPAHs, approximately 61 percent of all scale of 1 (not necessary) to 5 (very necessary).229 files evaluated in a month contain an educational 226 Average scores between 4.81 and 6.36 on a scale of 1 to 10. Opinion survey Q2B: Practices and experiences of specialists working within the Service for the Comprehensive Assessment of Adults with Disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January-February 2021. 227 Therefore, 5 counties and 1 district of Bucharest, out of those studied, do not provide an educational assessment. 228 A number of 4 SECPAH chiefs did not provide estimates of the number of files containing education level assessments. Estimates for November 2020, for 23 counties and 3 districts of Bucharest. 229 Opinion survey Q2B: Practices and experiences of specialists working within the Service for the Comprehensive Assessment of Adults with Disabilities (SECPAH, N=146), in 39 counties and 6 districts of Bucharest, January–February 2021. Chapter 4 I 113 • According to the legal provisions,230 the professional orientation certificate and then must conclusions and recommendations of the search for viable educational options on their education level assessment may include: own, and then make other files or applications completion of studies, where appropriate; or more trips in order to participate in them. Second Chance (”A doua șansă”); or alternative The process is very complex and involves a education programs. However, similar to high level of information, requires the ability to vocational assessment, the existing institutional interact with various institutions/organizations, arrangement involving SECPAH - CEPAH and has costs that only a small number of people - County School Inspectorates (ISJ/CJRAE) - with disabilities can afford. educational establishments - AJOFM - training • Finally, in Romania, the assessment of providers does not facilitate the participation educational level is not based on specific tools of people with disabilities in education. For or methodologies to identify all the services that example, the national Second Chance program can provide adequate support for persons with for completing compulsory education (primary disabilities to participate in education. The fact and secondary school) is available at national that the educational assessment is carried out level, with the resources needed to organize rather formally (or not at all) is also reflected Second Chance classes being planned from one in the PIRIS and PIS. Thus, in most cases, the academic year to the next by the ISJs, according PIRIS and PIS do not adequately reflect the to requests from schools, based on lists of results of the educational assessment, with the potential beneficiaries (in line with funding per sections on educational (as well as professional) pupil). SECPAH is responsible for carrying out activities being mostly incomplete (see analysis the vocational assessment, but does not draw up in Chapter 6). a list of potential beneficiaries in time to send to the educational establishments or to the ISJ, so In a just a few of the SECPAHs studied, that the planning of Second Chance classes does educational level assessment is always carried not take into account and directly registers people out by the types of specialists stipulated in the with disabilities who wish to participate in this legislation,231 as shown in Figure 22. In most cases, program. The same situation exists for people it is carried out by an educational psychologist, but who would like to take vocational courses: There there are also many SECPAHs (12 out of 30) where is no institutional referral mechanism to AJOFM a significant part of the files are assessed by other and training providers. In the current context, at types of specialists, especially by psychologists and best, the applicant obtains the educational and social workers (see also Section 9.2.1). Figure 22: Assessment of the education level, according to SECPAH chiefs (number of counties) 30 27 28 26 17 12 13 9 6 3 3 0 Not Yes, in some Yes, in most Yes, always None Yes, section/ Social inquiry Interview Interview Standardized cases cases chapter in from SPAS with the with the instruments the general applicant applicant’s assessment representative procedure Assessment of the education level carried out by an Procedure for the Data sources used in the assessment of education level educational psychologist, and education instructor, or a assessment of the reintegration teacher (HG 268/2007, art. 48, lit. e) education level Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 27 counties and 3 districts of Bucharest, January–February 2021. 230 ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report. 231 GD no. 268/2007, Art. 48(e). 114 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM There is a chapter/paragraph in the general methodology for combining this information procedure for educational assessment in only with the results of the medical and psychological 17 of the 30 SECPAHs that provide such type of assessment. However, as these two conditions are assessment (see Figure 22). In accordance with the not met in Romania, these three assessments are regulations in force,232 the main data233 on which components of the needs assessment of persons the educational assessment is based comes from with disabilities and not the disability assessment. the social inquiry carried out by SPAS, in 27 (out What differentiates the assessment of the social of 30) counties, and especially from interviews with integration level is that in Romania, it plays a the applicant or his/her family/representative. The significant role in recommending (by SECPAH), use of specific standardized tools for educational and establishing (by CEPAH) the right to a personal assessment was mentioned by only 3 SECPAH chiefs, assistant and sometimes to other services, such as namely the educational psychologist assessment residential care, day care, or home care. sheet. In general, however, each specialist uses their In Romania, the assessment of social integration own tools or does not use any assessment tool at all, level is not available in all counties, just in 30 but merely records the level of education completed counties and 4 districts of Bucharest (out of a total by the applicant. of 36), according to SECPAH chiefs’ reports in the The data from Annex 5, Table 4 show that, in institutional survey Q2A.235 In most SECPAHs,236 the opinion of SECPAH specialists, the tools used the assessment of social integration level is the for the educational assessment allow for a less joint responsibility of 2–4 specialists, usually, the than satisfactory assessment from a psychosocial psychologist and social worker. However, there perspective, both in terms of activity limitations, are also counties in which it is carried out by an participation restrictions, or environmental factors educational psychologist, a reintegration teacher, that may act as barriers or facilitators in the area of and, less frequently, by physicians or other specialists education.234 (see also Section 9.2.1).237 However, a dedicated chapter/paragraph in the general procedure for 4.2.7. Assessment of Social Integration assessing the level of social integration has been Level and Skills (Degree of developed by only 18 (out of 34) SECPAHs. In accordance with the regulations in force,238 the main Dependency) data underlying the assessment of the level of social The assessment of social integration level and integration come from multiple sources, mainly skills is the third mandatory area, alongside the social inquiry carried out by SPAS, in 33 (out of vocational and education level assessment, with 34) counties, interviews with the applicant or his/ a minor impact on the final recommendation for her family/representative (in 33, and 30 counties classification of degree and type of disability. All respectively) and the psychological assessment (in three types of assessment provide information from 24 counties). a psychosocial perspective, which could influence The regulations239 stipulate that relevant data for the classification of disability degree, if it were the assessment of social integration level and skills based on ICF principles and if there was a rigorous (degree of dependency) shall relate to: (i) the process 232 The ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report states that references for educational assessment can be identified in: sheets/certificates/recommendations issued by the educational institutions; social inquiry— template in Annex 6 to GD no. 430/2008—section I. 233 In accordance with the ANPD instruction of 3.12.2018, on how to complete the comprehensive assessment report, the relevant educational assessment data refers to: (i) type of education (mainstream/special); (ii) level of education; (iii) education completed or not; and (iv) reason for school drop-out. 234 Average scores between 5.56 and 6.52 on a scale of 1 to 10. Source: Q2B: Practices and experiences of specialists working within the Service for the Comprehensive Assessment of Adults with Disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. 235 So, 2 counties among those studied stated that they do not provide assessment of the level of social integration. 236 According to GD no. 268/2007, Art. 48(f). 237 In the institutional survey Q2A, of the 34 SECPAHs carrying out the social integration level assessment, 27 chiefs reported that this is provided by psychologists, 21 mentioned social workers, 13 answered educational psychologists, 4 said reintegration teachers, and 2 named other specialists. The data are consistent with those reported by SECPAH chiefs in the SECPAH staff activity participation table which collected information on the specific tasks performed by each employee, where the list of tasks was compiled in accordance with the National Framework Procedure (Annex to Order no. 2298/2012). 238 The ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report states that references for social integration assessment can be identified in: social inquiry—template in Annex 6 to GD no. 430/2008; other documents. 239 ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report. Chapter 4 I 115 of social integration, defined as the interaction rural and urban applicants, according to SECPAH between the individual and the social environment, specialists. Figure 23 (and Annex 5. Table 5) shows through which a functional balance of the parties that the satisfactory information refers to self-care, is achieved;240 (ii) whether the person engages in self-service, use of media and communication lucrative activities that involve interaction with means, mobility, intimate relationships, and support other people; (iii) whether the person develops and networks (average scores above 7, on a scale of 1 maintains interpersonal relationships (permanent to 10). By contrast, information on participation or occasional): whether the person has relationships in education, work, leisure, civic, cultural, or with family, friends, and neighbors; and (iv) whether community activities, as well as on the attitudes of the person belongs to sports/cultural clubs. Out family, neighbors, and the community towards the of these relevant data for assessing degree of applicant, is less satisfactory (average scores below dependency, only some information from the social 7, on a scale of 1 to 10). inquiries drawn up by SPAS are satisfactory for both Figure 23: The extent to which data obtained from social inquiries sent by rural and urban SPASs are sufficient to allow detailed and accurate assessment of social integration level (degree of dependency), according to SECPAH specialists, average values, on a scale of 1 (none) to 10 (total) Self-care 8.4 7.6 Self-service 8.3 7.5 Use of media and communication means 8.3 7.6 Mobility and necessary aids with assistive devices 7.9 7.3 Intimate relationships and support networks 7.7 7.2 Participation in education, work, leisure 7.4 6.7 Civic, cultural or community activities 6.8 6.0 Attitudes of family, neighbors and the community 6.8 towards PwD 0.0 2.0 4.0 6.0 8.0 10.0 Data from social inquiries done by URBAN SPASs Data from social inquiries done by RURAL SPAS’s Source: Opinion survey Q2B: Practices and experiences of specialists working within the Service for the Comprehensive Assessment of Adults with Disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. Note: See also Annex 5. Table 5. The same ANPD241 instruction declares care center, placement with a professional personal that the purpose of the assessment is to make assistant, or provision of home care services). recommendations aimed at identifying a support group, social counseling services, or 4.2.8. Establishing Conclusions and education programs. It is not clear why findings/ Recommendations of the recommendations for education programs should Comprehensive Assessment be included in the assessment of dependency degree and not in the assessment of education level. The previous sections have shown that the But more importantly, in practice, the assessment comprehensive assessment for disability degree of social integration level is most often used to classification covers, in most counties and for establish the right to a personal assistant or a most applicants, all six mandatory242 areas and protective measure (admission to residential or day is carried out by relevant specialists based on 240 Law no. 292/2011 on social assistance, Art. 6(dd). 241 ANPD instruction of 3.12.2018 on how to complete the comprehensive assessment report. 242 As provided for in the legislation, GD no. 268/2007, Art. 48. 116 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM an impressive amount of data provided by the allow only for a less than satisfactory assessment applicants in their files. Besides the medical and from a psychosocial perspective, both in terms psychological documents, the main sources of data of activity limitations, participation restrictions, SECPAH uses are the social inquiry prepared by or environmental factors that may act as barriers SPAS and the interview with the applicant and his/ or facilitators. her family/representative. However, as shown in There are no specific tools or methodologies for Sections 4.2.1–4.2.7, the data have some important data analysis, and no clear rules on what data should limitations, namely: be used/analyzed for each assessment area.244 • Although sometimes marked by inconsistencies Although the comprehensive assessment is a multi- or vague or unclear conclusions/diagnoses, criteria assessment, there are no specific weights the data for the medical and psychological or rules that clearly establish the contribution of assessment allow for a satisfactory assessment, each domain to the assessment’s final outcome. As report SECPAH specialists (see Annex 5), a result, the data is used and analyzed differently regarding both impairments of body structures from one county to another, and, sometimes from and body functions, as well as activity limitations one specialist to another, especially as many and participation restrictions. SECPAHs have not developed specific working • The data for social assessment are not collected procedures in this respect. systematically or uniformly, although they come Accordingly, the dominant practice is to make predominantly from social inquiries that are the final recommendation for the disability degree drawn up by most SPAS based on the framework classification basically based on quantifiable model laid down in the legislation.243 According data, perceived by SECPAH specialists to have to SECPAH specialists, the completeness and the highest level of completeness and accuracy, accuracy of the information is unsatisfactory, that is primarily the medical and psychological especially regarding dwellings/housing, the data. In contrast, “soft” data on a person’s level of person’s economic situation, and the community functioning has, in most counties, limited impact on services. Also, the SECPAH teams interviewed the final assessment. often mention conflicting information that SECPAH’s comprehensive assessment results they find in the social inquiry compared to the in a set of documents that are sent to CEPAH for information presented in the family physician’s the final decision on disability degree classification, referral letter or the specialized medical namely: practitioners’ report (especially regarding the 1. the comprehensive assessment report containing: person’s mobility, cognitive, and visual functions, i. conclusions and recommendations for each etc.). In addition, the social inquiry on file rarely assessment area are; includes comprehensive information about the ii. proposal for classification/non-classification applicant’s living context, daily routine, lifestyle for degree of disability; choices, or difficulties faced, with a focus on contextual and environmental factors that might iii. proposal for professional orientation and the act as a resource (facilitator) or barrier (obstacle). Professional Orientation Certificate; Furthermore, the social inquiry framework iv. proposal to take a protective measure; model is missing a section that should reflect v. decision to include the personal assistant the point of view of the person with disabilities, service, for those with a severe degree of such as their fears, concerns, how they would deficiency like to live, and plans for the future. 2. the PIRIS and, 3. in some cases, the PIS. • The data for the vocational assessment, education SECPAH recommendations are decided as a level assessment, and the social integration level team (Table 9). However, 21 of the 36 SECPAH and skills assessment (degree of dependency) chiefs who responded to the Q2A questionnaire are collected sporadically and unevenly, reported that there is one member of the team although they are part of the social inquiries who contributes more than the others, namely based on the framework template. According the specialized medical practitioner, in terms of to SECPAH specialists (see Annex 5), these data determining the proposal for disability degree 243 GD no. 430/2008, Annex 6. 244 The only guidance available is in the ANPD instruction of 3.12.2018, on how to complete the comprehensive assessment report. Chapter 4 I 117 classification/non-classification. All other SECPAH psychologist (in 8 counties), the psychologist (in recommendations are team-decided in most but not 5 counties), or another specialist (in 3 counties), all counties. For example, 10 SECPAH chiefs state which is in line with the regulations. Similarly, in 14 that in their county, the main responsibility for counties, the proposal for a protection measure is the determining the conclusions and recommendations responsibility of a social worker or, less frequently, a of the comprehensive assessment report lies with the physician. Also, 9 SECPAH chiefs indicate that the specialized medical practitioner. Also, 16 SECPAH decision to grant the right to a personal assistant for chiefs indicate that in their teams, the proposal for people with severe deficiencies is mainly taken by professional orientation and the corresponding a physician (in 6 counties) or a social worker (in 3 certificate are the responsibility of the educational counties). Table 9: How SECPAH recommendations and proposals are determined, according to SECPAH chiefs (number of counties) In the process of determining the following 1. Is there a team member (with 2. Is there an area aspects: a particular specialization) who of assessment that contributes more than others? “weighs heavier”? Yes No Yes No Conclusions and recommendations of the 10 25 26 9 comprehensive assessment report Proposal for classification/non-classification for degree 21 13 26 9 of deficiency Proposal for professional orientation and Professional 16 20 15 21 Orientation Certificate The proposal to take a protective measure 14 21 17 19 PIRIS - Individual Rehabilitation and Social Integration 2 32 3 30 Program PIS – Individual Service Plan 2 27 2 27 Decision to include the personal assistant service in PIS 9 22 10 21 for persons with severe deficiencies Source: Institutional study Q2A: Factual data and indicators on the activity of the Services for the Comprehensive Assessment of Adults with Disabilities (SECPAH) in 32 counties and 4 districts of Bucharest, January-February 2021. Note: The sum of cells per line/question should be 36, which is the total number of SECPAH chiefs who participated in Q2A. In the case of smaller sums, the difference up to 36 represents non-responses or situations where SECPAH does not carry out those activities, as is the case for MTR6 which is only prepared in some counties in the country. Table 9 also shows that there is an area of assessment.245 The proposal for a protective measure assessment that “weighs more heavily” in the is also decided according to a specific area of decision on certain SECPAH proposals. assessment in 17 counties, but this may be social (in The conclusions and recommendations in 12 counties), medical (in 2 counties), psychological the comprehensive assessment report are (in 2 counties), or as per social integration level and predominantly based on the medical assessment in skills assessment (in 1 county). However, in most 26 of the 36 SECPAHs studied. Similarly, the proposal counties (19 out of 36), the proposal for a protective to classify/not classify a degree of deficiency is measure is made after considering the results of the predominantly based on the results of the medical assessment in several areas. Granting the right to a assessment. The professional orientation proposal personal assistant is primarily based on medical (in is mainly based on vocational assessment (in 9 7 counties), social (in 1 county), or social integration counties), but also on educational (in 4 counties), level and skills (in 2 counties) assessments. social (1 county), or even psychological (1 county) 245 In the other 21 of the 36 counties in the sample, the proposal for professional orientation is made based on the findings from several assessment areas. 118 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Therefore: (i) current practices regarding the require that the disability assessment process determination of SECPAH recommendations differ should include both medical (impairments of the significantly between counties; (ii) the proposal for body’s functions and structures) and functional disability classification/non-classification, which (activity limitations and participation restrictions, is forwarded to the CEPAH, is primarily made by depending on environmental and personal factors) the specialized medical practitioner; and (iii) the components, and that these components should medical assessment provides the key elements in participate in both the definition of assessment determining the conclusions and recommendations criteria and the decision-making process. For in the comprehensive assessment report. Focus this reason, the medical information is essential groups with SECPAH specialists confirmed this for assessing the degree of disability, but it is not data reported by SECPAH chiefs in the Q2A sufficient. The decisions need to take into account questionnaires. what the person can and cannot do in their Given the central role of the physician within the environment, not just the medical diagnosis. In SECPAH team, it is important to reiterate the fact contrast, in Romania, given the substantial variation that most are either general practitioners or family between counties, the different compositions of the physicians. As mentioned, the medical assessment SECPAH teams, the different information gathering is carried out by SECPAH in all counties and procedures, and the different approaches to the districts of Bucharest. Therefore, 100 percent of the final decision-making process (the joint decision of applicants receive a medical assessment. However, the SECPAH team versus a single decision of the only about 5 percent of applicants are assessed by physician), it is not possible to estimate at national a medical practitioner specialized in work capacity level whether and to what extent information on the (requested by SECPAH or not). And only 5 percent person’s functioning and living context plays any are assessed by a medical practitioner specialized procedural role in the comprehensive assessment. in physical medicine and rehabilitation. Moreover, In addition, there is no methodology or procedure of the 36 SECPAHs studied, only 4 services to ensure that the information on functioning has collaborate with a medical practitioner specialized any impact on the final assessment. in work capacity, within the National House for It is absolutely necessary to define and Public Pensions, and only 1 SECPAH collaborates implement new procedures for assessing and with a medical practitioner specialized in physical classifying the disability degree based on the ICF and rehabilitation medicine. Although there is no principles, as the current procedures are not always legal requirement for adult assessment services to clear or consistent across counties. It is important employ, collaborate with, or request assessments to underscore the fact that ensuring uniform tools from physicians with these two specialties, this data and procedures at county level is a necessity from is highly relevant from the ICF perspective, because a human rights perspective: it is fair and equitable these medical specialties have approaches aligned that people in similar situations and with similar to the ICF model. levels of disability be assessed in a similar way In conclusion, the assessment procedure and tools throughout the country. Any other approach is used in the comprehensive assessment carried out unfair and discriminatory. This is laid down in all by SECPAH are not aligned with the ICF principles. human rights treaties and in the UN Convention According to the ICF model of functioning and on the Rights of Persons with Disabilities. New disability, functioning and disability are the result procedures should be developed in a collaborative of the interaction between health condition and process that involves specialists, social workers, personal and environmental factors, as presented international ICF experts, policy makers, and in Section 1.5. Correspondingly, the ICF principles advocates for the rights of persons with disabilities. 4.3. Medical-psychosocial criteria This subchapter covers the medical-psychosocial overview of the criteria, while the second section criteria on which the classification of disability analyzes the criteria from the perspective of the degree is based. The first section provides an ICF.246 246 More details on the ICF are available in subchapter 1.5. Chapter 4 I 119 4.3.1. Overview of the Medical- tolerance test, mean corpuscular hemoglobin Psychosocial Criteria concentration, etc.). These instruments measure the body’s “functional parameters.” This means that In Romania, the comprehensive assessment of in terms of diagnosis, the medical-psychosocial adults for disability degree classification is based criteria are well-founded in clinical medicine. on medical-psychosocial criteria, defined by Joint Unlike traditional Baremic tools—such as the Order no. 762/1.992/2007.247 From a technical point most influential modern scaling tool, the American of view, at the heart of the medical-psychosocial Medical Association’s Guides to the Evaluation of criteria is an assessment based on scales.248 A Permanent Impairment—the Romanian medical- Baremic assessment method is an arbitrary ordinal psychosocial assessment criteria were designed to scale that attaches percentage values, degrees, or perform several additional functions, presumably other qualifiers (mild, moderate, severe, profound) to align them with the terminology used in the to different levels of disability based on the degree ICF, at the very least. The medical-psychosocial of impairment of various parts of the body. Scores criteria are therefore a complex working tool, both based on scales are widely used around the world as structure and through its internal components. and associate certain percentages of deficiencies or Joint Order no. 762/1.992/2007 approving the impairments of organs or functions with degrees of medical-psychosocial criteria has undergone a disability. Almost every country in the world that number of amendments and supplements over has a formal disability assessment procedure has at time.249 It is organized into eight chapters and some point used or continues to use some form of is based on the model of classification of body the scales-based system. functions described by the ICF. Each of these Frequently, the degree of severity of a disease or chapters is subdivided into assessment domains organ disorder (or other diagnosed abnormality) based on major groups of conditions, which are is identified by standard tests or other tools (e.g., in turn organized into major diseases, injuries, or dioptric autorefractometer for visual acuity syndromes and associated impairments. impairment, blood pressure measurement, exercise Areas of assessment (examples) Chapters For example, Chapter 2 is subdivided into: 1. Mental functions 2. Sensory functions pct. I Assessment for classifying into a degree of deficiency of persons with impaired visual 3. Phonatory functions and verbal communication; 1 functions Assessment of the degree of disability in voice impairment 4. Functions of the cardiovascular, hematological, pct. II Assessment for classifying into a degree immune and respiratory systems 2 of deficiency of persons with impaired hearing 5. Functions of the digestive, metabolic, and endocrine functions system 6. Urogenital functions 7. Neuro-musculoskeletal functions and related 3 pct. III Assessment for classifying into a degree movements of deficiency of persons with impaired vestibular 8. Skin functions functions 247 Joint Order of the Minister of Labor, Family and Equal Opportunities and the Minister of Public Health no. 762/1.992/2007 approving the medical-psychosocial criteria based on which the degree of disability is determined, with subsequent amendments and supplements. 248 The scales method was named after the 17th century French mathematician Francois Barrème who devised a table of ordered percentage values for different types and degrees of severity of bodily damage to compensate for war-related injuries. 249 They are: Order no. 692/982/2013 amending Chap. 1 Mental functions; Order no. 707/538/2014 amending Chap. 2 Sensory functions and Chap. 7 Neuro-musculoskeletal functions and related movements; Order no. 131/90/2015 on the amendment of Chap. 4 point A.II. Assessment of the degree of disability in the impairment of functions of arteries related to blood flow; Order no. 874/554/2016 on the amendment of Chap. 8 Assessment of persons with major sequelae of complex burns in order to classify the degree of disability; Order no. 1070/403/2018 Chap. 4 Functions of the cardiovascular, hematological, immune and respiratory systems, Chap. 5 Functions of the digestive, metabolic and endocrine system, Chap. 7 Neuro-musculoskeletal functions and related movements; Chap. 8 Skin functions; Order no. 741/577/2019 on the amendment of Chap. 2 Sensory functions, Chap. 7 Neuro- musculoskeletal functions and related movements. 120 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The medical-psychosocial criteria is a Baremic- of impairment/deficiency/handicap into four or based tool that provides an assessment of the degree five points (minor, medium, marked, and severe of disability in terms of diagnosis or impairment/ with or without personal assistant), based on a deficiency. As a Baremic-style assessment tool, its description of the results of the diagnostic test or main function is to link diagnostic categories or examination. Box 6 shows an example of how this impairments to a particular degree of disability appears in the medical-psychosocial criteria. (“handicap”). This is done by classifying the degree Subjective liminal tone audiometry, FUNCTIONAL speech audiometry, early auditory evoked PARAMETERS potentials, impedancemetry and acoustic otoemissions. MODERATE MEDIUM Bilateral hearing loss between 41–70 dB, IMPAIRMENT HANDICAP prosthetic. Example of Hard-to-protect hearing loss above 70 disability degree dB, associated with mental and language classification disorders. SEVERE MARKED Congenital deafness or deafness acquired IMPAIRMENT HANDICAP before language acquisition accompanied by mutism (deaf-blindness with poor/ no demutism), with loss above 90 dB (profound deafness and cofosis). Source: Chap. 2 Sensory functions, Point. II Assessment of persons with impaired hearing functions for disability degree classification Although predominantly based on Baremic scales, provide functional parameters that summarize the the medical-psychosocial criteria are adjusted results of diagnostic tests or clinical examinations to include two additional components, namely used for diagnosis. This is a valuable component functional parameters, as well as activities– of this working tool, as it helps to standardize the limitations and participation–needs. Thus, for each assessment criteria for each condition. The quote 4.4 major group of conditions (or more often, for each offers an example of functional parameters. condition), the medical-psychosocial criteria also Orthopedic examination, radiological examination: blunt; overlying joint, contralateral, spine, depending on location, to assess consequences of locomotor disability; blunt testing, prosthesis and limb/limbs functionality testing, Oscillometric indices, biometric 4.4 testing specific to the affected structure, joint mobility testing, muscle testing, spine mobility testing, neurological examination, in some cases, autonomy assessment scales: ADL, IADL, SOS, etc. (Chap. 7 Neuro-musculoskeletal functions and related movements, point III. Assessment of persons with motor function impairment (of statics and mobility - locomotion and/or gestures) for disability degree classification, 1. Amputations from Order No. 707/538/2014 amending and supplementing Order No. 762/1.992/2007) Chapter 4 I 121 The last additional component of the medical- services, and other requirements. Box 7 shows an psychosocial criteria relates to activities–limitations example of this component. and participation–needs. This was added with In fact, this component is an assessment of the the clear intention of alignment with the ICF, as it needs in order to carry out a professional activity. extends the standard Baremic scales approach to In some cases, the specification of job capacity more closely follow the ICF model. Thus, for each (including examples of job types) and job needs are health problem, after the degree of impairment/ extremely detailed (Box 8). deficiency/handicap is presented in a table, another Together, the degree of impairment/deficiency/ table presents the presumed impact of each degree handicap and the assessment of the person’s of “disability” on the types of activities and on areas activities–limitations and participation–needs create of participation. However, unlike the ICF, which a single comprehensive assessment tool, allowing covers all areas of activity and social participation, for two separate assessments: one to determine the Romanian medical-psychosocial criteria deal the degree of disability and the other to identify mainly with activities associated with work and work-related needs, as well as adaptive capacity, employment. self-care, and self-service (degree of autonomy). Under the heading Activities–Limitations, Other countries use two separate assessment tools the tables list a combination of activities and and procedures to make these two very different general descriptions of the type of occupation, assessments: a disability assessment supports profession, and job that a person with the specified the summary decision on the degree of disability degree of disability could perform. Under the to qualify for benefits, and a needs assessment heading Participation–Needs are descriptions identifies the resources a person needs to carry out of prerequisites for being able to work in an daily activities and participate in the community. occupation, profession, or job—such as an assistive technology that can facilitate access to a job, social ACTIVITIES–LIMITATIONS PARTICIPATION–NEEDS MEDIUM Activities involving the safety of Hearing aid HANDICAP other people—driving heavy vehicles, buses, minibuses, airplanes, trains, etc.—or operational activities in professions requiring hearing standards—police, army, air force, etc.—are not recommended. Examples of Activities–Limitations/ MARKED Activities involving the safety of Providing optical signaling Participation–Needs HANDICAP other people—driving heavy systems to replace audible component vehicles, buses, minibuses, ones airplanes, trains, etc.—or operational activities in Hearing aid professions requiring hearing standards—police, army, air force, Provision of sign language public communication activities, interpreters in public telecommunication, etc.—are not institutions recommended. Source: Chap. 2 Sensory functions, Point. II Assessment of persons with impaired hearing functions for disability degree classification 122 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 4.3.2. Medical-Psychosocial Criteria from a standard way and reported in a comparable the ICF Perspective manner nationally and internationally. This will require a standardized terminology and coding Romania’s current legislation provides that the capability to ensure interoperability. The ICF assessment of the disability degree is based on a provides such an information infrastructure for “medical-psychosocial model,” which is aligned data related to functioning. However, as far as with the WHO’s ICF, meaning that the degree of medical information is concerned, the medical- deficiency (minor, medium, marked, severe) is psychosocial criteria will need to be reviewed determined according to: (i) medically established and, over time, updated to align with the latest functional parameters; (ii) activity limitations; and version of the International Classification of (iii) participation restrictions. However, this section Diseases, ICD-11; this updating of criteria will proposes a more in-depth analysis of the disability only be possible once the Ministry of Health has degree classification criteria used in Romania, adopted ICD-11.251 on two dimensions:250 scientific substantiation as From the point of view of scientific standards, assessment tools and alignment with the ICF. within the medical-psychosocial criteria, the way From a medical point of view, it can be generally of determining the degree of disability is rather assumed that the medical-psychosocial criteria used arbitrary and empirical. The medical-psychosocial in Romania are scientifically sound. In interviews criteria classify the severity of conditions and and focus groups, SECPAH and CEPAH specialists impairments and provide medical descriptions mentioned the lack of some diagnoses in the of each level of severity. The rationale underlying medical-psychosocial criteria (especially for older the classification of a medical condition as minor, adults) or other specific aspects for which they could medium, marked, and severe is assumed to be be considered somewhat outdated. Nonetheless, in a clinical judgement supported by consensus general, there is no reason to consider the medical- validation. However, the severity of the medical psychosocial criteria medically deficient. However, condition is not identical to the degree of disability. two changes to the medical-psychosocial criteria In Romania, there are no studies based on scientific would be welcome, namely: standards testing the relationship between i. In their current form, the medical-psychosocial the severity of the condition and the degree of criteria cannot adequately assess co-morbidities; disability. Thus, even if it has apparent clinical for example, in the common situation where validity, the degree of disability is determined in a person has several conditions that may the absence of a scientifically sound methodology— interact and have combined effects on their either evidence-based, or a methodologically robust level of functioning. A specific methodology or form of consensus. Furthermore, as shown in algorithm that takes into account the person’s co- subchapter 4.2, most of the tools used in four of the morbidities for the purpose of disability degree six mandatory assessment fields—social, vocational classification would add value to the disability or professional skills, educational, social integration degree classification assessment. level and skills—are not scientifically validated for ii. In the future, Romania could benefit from a the disability degree assessment. more robust electronic system for collecting From the point of view of alignment with health care information, whereby information the ICF bio-psychosocial integrative model,252 on health and functioning can be collected in the medical-psychosocial criteria aim to assess 250 The scientific basis of an assessment tool is assessed depending on the measurement methodology it uses and its suitability for the purpose for which the tool was created. The measurement methodology can be quantitative or qualitative. If the methodology is quantitative, the scale used by the tool makes the difference. With regard to the disability degree classification, a tool based on a continuous scale would allow a numerical degree to be determined, e.g. a degree of functional impairment of 10 percent, 50 percent, etc. On a category scale, the degree that can be determined is a category such as minor, medium, marked, severe (as in Romania). A tool with a dichotomous (yes/no type) scale could only signal the presence/absence of the disability, but the degree of disability cannot be determined. A tool based on a qualitative methodology might be adequate to describe the types of problems a person faces, but it cannot determine the extent of the problem. Regardless of the type of measurement methodology, a “good” tool has the basic psychometric properties of validity and reliability. 251 Romania currently uses ICD-10. 252 ICF is primarily a common coding system for the functioning dimensions and the determinants of the degree of functioning. It is important that, although the ICF manual provides a method with a scale of severity of five qualifiers, the ICF was never intended by WHO to be used independently, much less as a standard assessment tool. ICF is primarily a data dictionary for epidemiological purposes and is used as a standard worldwide. The ICF, more than a classification, is a model for assessing functioning and disability, and it is this feature of the ICF that the Romanian government refers to in its objective of “alignment.” Chapter 4 I 123 the ICF domains concerning “activities” and comprehensive assessment carried out by SECPAH “participation,” but this information is neither is predominantly based on medical criteria and, in quantifiable nor sufficiently used to determine the the absence of quantifiable psychosocial criteria, degree of disability. The regulation253 containing the cannot accurately capture either the person’s needs medical-psychosocial criteria uses ICF terminology or participation restrictions or activity limitations in the way the chapters are organized, at the level (functional assessment). For example, in focus of classification options and within the “activities/ groups with specialists, but also with NGOs, it was participation” component. But the mere use of stressed that simply diagnosing dementia cannot ICF terminology does not mean that the current capture the reality of the experience of living with criteria integrate the ICF model of functioning and dementia, as this experience is often shaped by the disability. The ICF bio-psychosocial model considers environmental demands and context in which the that functioning and disability are phenomena applicant lives. The existing criteria, therefore, do determined by both a person’s level of intrinsic not reflect the understanding and operationalization capacity to perform an action, depending on his/ of disability promoted by the ICF. her health status, and by the level of performance of Moreover, in the ICF-based conceptual model, an action in his/her real environment. Disability key elements include a partnership between the assessment therefore involves assessing both the person and the service provider. Thus, regardless person’s capacity in terms of their health and their of the person’s age or health status, the service environment, which together determine their level provider takes into account the person’s routines/ of performance (i.e., their degree of disability). lifestyle, concerns, fears, and plans with reference to all areas of life (health, education, work, and In this respect, alignment with the ICF requires social activities). From the ICF perspective, most of compliance with the following principles: (i) the tools used in Romania both for assessing and disability is not directly or exclusively a health determining disability, and for assessing service problem of a person; (ii) disability is not a disease, needs, are still too focused on medical aspects; injury, or other impairment of health, nor does it they are insufficiently participatory and based simply consist of one or more impairments that on models that need to be revised to include the result directly from an existing condition; (iii) person’s resources, the way he/she wants to live, disability is experienced by a person in the context and environmental factors, in addition to the needs of real life, which affects the actions, tasks, and identified by the assessment. Interviews with people social roles a person can perform; (iv) disability can with disabilities have repeatedly emphasized the only be understood in terms of the impact of the need to fully and thoroughly consider how their environment on a person’s ability to perform actions, health problems affect their daily lives. tasks, and social roles, simple or comprehensive; and (v) assessing disability in a manner aligned In conclusion, Romania’s comprehensive with the ICF requires both an assessment of the disability assessment is designed in the regulatory applicant’s health status and of the impact on the documents to cover two very different types person’s activities, taking into account the person’s of assessment from a theoretical point of view: environment and living context. disability assessment and assessment of the needs of people with disabilities. Countries with developed The medical-psychosocial criteria are basically systems carry out these two assessments as separate a standardized tool based on the Baremic steps involving different specialists and structures. method,254 which has been extended to include Thus, the modernization of Romania’s assessment the domains “activities” and “participation,” as and classification system implies, first of all, a shift well as professional skills. In addition, in their from “handicap” (medical approach) to “disability” current form, the medical-psychosocial criteria (integrative bio-psychosocial approach). To this end, include functional parameters. These are important the disability assessment must be clearly separated because they provide a standardized medical from the needs assessment, and the two types of assessment of symptoms and risk factors. The assessments should be applied in a standard and problem is that, as shown in subchapter 4.2, the uniform manner in all counties. 253 Joint Order of the Minister of Labor, Family and Equal Opportunities and the Minister of Public Health no. 762/1.992/2007 approving the medical-psychosocial criteria based on which the degree of disability is determined, with subsequent amendments and supplements. 254 The Baremic method consists of using reference scales, to which values or percentages are attached, to define disability, according to the Council of Europe (2002: 13). In general, the scales-based approach is not consistent with the model of functioning and disability presented in the ICF. 124 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM i. The disability assessment must be aligned market, educational services, medical services with the ICF principles. To this end, the first (including assistive devices and technologies), necessary reform is to collect information from or various social services (from residential or a psychosocial perspective in a consistent, day care centers, to habilitation/rehabilitation, standardized way across counties and recovery, personal assistant, home care, etc.). For in a scientifically-based manner. Second, each, the needs assessment involves specific tools this information must have the same real, and methodologies based on which to identify, in transparent, and quantifiable impact on the a person-centered manner, the most appropriate final disability degree classification assessment services/activities/measures to support the in all cases and in all counties. Instead of six person’s recovery and achievement of their areas of comprehensive assessment, the system maximum potential, according to their own should collect information on functioning, in a routines, expectations, concerns, and lifestyle uniform manner, using a single standardized choices. The development and implementation psychometric tool. This tool must be scientifically of the needs assessment will require provision appropriate to enable a global or total score of of the necessary resources to the structures the person’s disability to be obtained, preferably that will have this task, as well as clarification based on a full scale. Such a tool can provide a of the responsibilities in relation to SECPAH functioning score, which could be systematically and CEPAH. In the medium and long term, integrated into the medical assessment to it will be necessary to create a referral system, establish the final results of the assessment in strengthen cooperation between institutions order to classify the degree and type of disability. from different sectors (social, health, education), This substantial change of tools will, of course, and, at different levels (central, county, local), require changes in the responsibilities and strengthen case management for adults with procedures used by both SECPAH and CEPAH. disabilities, and above all, develop and diversify ii. The needs assessment of people with services for people with disabilities. disabilities should be aligned with UNCRPD iii. Disability assessment and needs assessment and, to every extent possible, with the ICF. should be applied in a standardized and Depending on the services that exist or are consistent manner in all counties. planned, each country conducts the needs Also, the medical-psychosocial criteria require assessment differently, but with the common constant updating in line with progress in the field goal of promoting greater autonomy for people of medicine, but also a continuous approach to the with disabilities, so they can enjoy their rights concept of disability, so that the assessment process and participate fully in social and economic life. can establish people’s real need for support and For example, countries may consider services to functional potential. integrate people with disabilities into the labor Chapter 4 I 125 ACTIVITIES–LIMITATIONS PARTICIPATION–NEEDS SEVERE Examples of Activities–Limitations/ Idem marked disability Idem marked disability HANDICAP Participation–Needs used to provide a very Can work at home or in adapted After prosthesis, adaptation to prostheses/orthoses: workplaces. • provision of means of travel for people with detailed description of work capacity and The social inquiry has a major postural deficiency (crutches or frame for those workplace needs role in determining the degree with unilateral amputations, wheelchairs for those of autonomy and functional with bilateral amputations); remnant, with the possibility • providing means of self-service and/or work for of adapting to prostheses those with bilateral loss of gestures; ACTIVITIES–LIMITATIONS PARTICIPATION–NEEDS and making the environment MINOR Any professional activity Unrestricted participation accessible, so that care and self- • full or partial support for care and everyday self- support activities. HANDICAP without limitations, except for Requires change of job in some service activities can be carried Depending on the outcome of the comprehensive those requiring fine, precise out independently or with occupations (e.g., pianist, violinist, assessment, the person may be classified as person gestures partial help, for limited periods etc.) with profound disability with the right to a personal of the day. assistant, if they have completely lost the ability to self-service, self-care and self-support and require permanent support, or as a person with profound disability without the right to a personal assistant, ACTIVITIES–LIMITATIONS PARTICIPATION–NEEDS when they require partial support for some daily MEDIUM Any profession, except for Professional orientation towards an accessible job activities. HANDICAP those that require: Vocational training and guidance according to • orthostasis and prolonged the age of the people who have lost their manual postural movements; dexterity, with reference to manual labor - unskilled • manual dexterity of both Provision of prostheses, orthoses, differentiated hands. aesthetic prostheses in order to activate in social life without restrictions ACTIVITIES–LIMITATIONS PARTICIPATION–NEEDS MARKED • Jobs with no physical demands, Provision of prosthetic means, adaptation of machinery, HANDICAP no movements and postural and/ reorganization of work when needed or gestural variants, depending on For people with postural locomotor deficiencies: morpho-functional impairments In addition to adequate prosthesis and adaptation to the Note: workplace so as not to require a posture that cannot be In developing recovery programs, achieved, it is recommended to facilitate this by additional consideration will be given to: means of support (ergonomically adapted chairs) or to • location and level of the easily allow postural changes required by the work, by amputation; handrails or support handles. • the causes that produced it; Transferring some machine controls from foot to hand or automating those controls • the effectiveness of the prosthesis; For people with physical disabilities with impaired gestures: • age; It is possible, where appropriate, to use prosthetic or • general and vocational training orthotic devices, possibly work prostheses adapted to depending on which it is the work sequences (clamps, hooks, etc.), to change the recommended: change of job or laterality and to adapt the machine, e.g. transferring the vocational training for static jobs, controls from one hand to the other, or from the hand accessible to postural or/and to the foot, changing the lever system of the controls to gestural disability. reduce physical effort. Source: Chap. 7 Neuro-musculoskeletal functions and related movements, point III. Assessment of persons with motor function impairment (of statics and mobility - locomotion and/or gestures) for disability degree classification, 1. Amputations from Order no. 707/538/2014 amending and supplementing Order no. 762/1.992/2007) 126 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 4 I 127 Conclusions of Chapter 4 Unlike in other countries, Romania’s disability assessment and disability determination (disability degree classification) are separate processes carried out by separate structures, i.e., adult assessment services (SECPAH) and assessment commissions (CEPAH). Most SECPAHs do not have all the specialists required by 1 the legislation255 to carry out the comprehensive assessment, which consists of a specialized medical practitioner, a social worker, and a psychologist, sometimes a physiotherapist, with a total of 5–7 members most often, but with variations between 2 and 22 specialists. In Romania, the comprehensive assessment of adults for disability degree classification comprises six mandatory areas of assessment: social, medical, psychological, vocational or professional skills, level of education, as well as social integration level and skills (degree of dependency).256 According to data reported by SECPAH chiefs, the comprehensive disability assessment covers all six mandatory areas in most (but not all) counties and for most applicants, and is carried out by relevant specialists, based on an impressive amount of data provided by the 2 applicant in the application file. But some of the data are marked by inconsistencies, including not being collected systematically or uniformly. Furthermore, there are no specific tools or methodologies for data analysis, and no clear rules on what data should be used/analyzed for each assessment area.257 Although the comprehensive assessment is a multi-criteria assessment, there are no specific weights or rules that clearly establish the contribution of each field to the final outcome of the assessment. As a result, the data is inconsistently used and analyzed from one county to another, and even from one specialist to another, especially as a large number of SECPAHs have not developed specific working procedures in this respect. The dominant practice is to primarily base the final recommendation for disability degree classification on quantifiable data (basically medical and psychological data), which SECPAH specialists regard as most complete and accurate. Current practices regarding the determination of SECPAH recommendations differ 3 significantly between counties, but in most of them, the proposal for disability degree classification/non-classification (which is forwarded to the CEPAH) is primarily made by the specialized medical practitioner, and the medical assessment provides the key elements for determining the conclusions and recommendations in the comprehensive assessment report. 255 GD no. 430/2008 and by Order no. 2298/2012 on the approval of the framework procedure for the assessment of adults in order to classify the degree and type of disability. 256 GD no. 268/2007, Art. 48, respectively Order no. 2298/2012, Art. 4. 257 The only guidance available is in the ANPD instruction of 3.12.2018, on how to complete the comprehensive assessment report. 128 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The assessment procedure and tools used in SECPAH’s comprehensive disability assessment are not aligned with the ICF functioning and disability model, precisely because the psychosocial data (on activity limitations and participation restrictions, depending on environmental and personal factors) have, in most counties, a limited impact on the final assessment. In fact, in Romania, given the substantial variation between counties, the different compositions of the SECPAH teams, the incongruent 4 information-gathering procedures, and the various approaches to the final decision- making process (a joint decision of the SECPAH team versus a single decision of the physician), it is not possible to estimate at national level whether and to what extent the information on the person’s functioning and living context plays any procedural role in the comprehensive assessment. In addition, there is no methodology or procedure to ensure that the information on functioning has any impact on the final assessment. Moreover, in the ICF-based conceptual model, key elements include a partnership between the person and the service provider. Thus, regardless of the person’s age or health status, the service provider takes into account the person’s routines/lifestyle, concerns, fears, and plans with reference to all areas of life (health, education, work 5 and social activities). From the ICF perspective, most of the tools used in Romania for both assessing and determining disability, and for assessing service needs, are still too focused on medical aspects, are insufficiently participatory, and based on models that need to be revised to include the person’s resources, the way he/she wants to live, and environmental factors, in addition to needs identified by the assessment. It is absolutely necessary to define and implement new procedures for assessing and classifying disability degree, based on the ICF principles. The current assessment procedures are not always clear or consistent across counties. It is important to underscore that ensuring uniform tools and procedures at county level is a necessity from a human rights perspective: it is fair and equitable that people in 6 similar situations and with similar levels of disability are assessed in a similar way throughout the country. Any other approach is unfair and discriminatory. This is laid down in all human rights treaties and in the UN Convention on the Rights of Persons with Disabilities. The new procedures should be developed in a collaborative process that involves specialists, social workers, international ICF experts, policy makers, and activists for the rights of persons with disabilities. In Romania, the comprehensive assessment of adults for disability degree classification is based on medical-psychosocial criteria, defined by Joint Order no. 762/1.992/2007. From the point of view of scientific standards, within the medical- psychosocial criteria, the way of determining the degree of disability is rather 7 arbitrary and empirical. Although the medical-psychosocial criteria have apparent clinical validity, the degree of disability is determined in the absence of a scientifically sound methodology—either evidence-based or a methodologically robust form of consensus. Chapter 4 I 129 The medical-psychosocial criteria are basically a standardized tool based on the Baremic-scales method,258 which has been extended to include the fields “activities” and “participation,” as well as professional skills. In addition, in their current form, the medical-psychosocial criteria include functional parameters, which are 8 important because they provide a standardized medical assessment of symptoms and risk factors. The problem is that the comprehensive assessment carried out by SECPAH is predominantly based on medical criteria and, in the absence of quantifiable psychosocial criteria, cannot accurately capture either the person’s needs or participation restrictions or activity limitations (functional assessment). The comprehensive assessment in Romania is by regulation designed to cover two very different types of assessment from a theoretical point of view: disability assessment and assessment of the needs of people with disabilities. Countries with developed systems carry out these two types of assessment as separate steps involving different specialists and structures. Thus, modernizing Romania’s disability 9 assessment and classification system implies, first of all, a shift from “handicap” (medical approach) to “disability” (integrative bio-psychosocial approach). To this end, the disability assessment must be clearly separated from the needs assessment, and the two assessments should be applied in a standardized and uniform manner in all counties. Disability assessment must be aligned with the ICF principles. To this end, the first necessary reform is to collect information from a psychosocial perspective in a consistent, standardized way across counties and in a scientifically-based manner. Second, this information must have the same real, transparent, and quantifiable impact on the final assessment for the disability degree classification in all cases and in all counties. Instead of six comprehensive assessment fields, the system should collect information on functioning, in a uniform manner, using a single standardized 10 psychometric tool. This tool must be scientifically appropriate to enable a global or total score of the person’s disability to be obtained, preferably, based on a full scale. Such a tool can provide a functioning score, which could be systematically integrated into the medical assessment to establish the final assessment results. This substantial change of tools will, of course, require changes in the responsibilities and procedures used by both SECPAH and CEPAH. The needs assessment of people with disabilities should be aligned with UNCRPD and, to every extent possible, with the ICF. Depending on the services for people with disabilities that exist or are planned, each country conducts the needs assessment differently, but has the common goal of promoting greater autonomy for people with disabilities, so that they can enjoy their rights and fully participate in social and economic life. For example, countries may consider services that integrate 11 people with disabilities into the labor market, educational services, medical services (including assistive devices and technologies), or various social services (from residential or day care centers, to habilitation/rehabilitation, recovery, personal assistant, at-home care, etc.). For each, the needs assessment involves specific tools and methodologies based on which to identify, in a person-centered manner, the most appropriate services/activities/measures to support the person’s recovery and achieve their maximum potential, according to their own routines, expectations, 258 The scales method consists of using reference scales, to which values or percentages are attached, to define disability, according to the Council of Europe (2002: 13). In general, the scales-based approach is not consistent with the model of functioning and disability presented in the ICF. 130 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM concerns, and lifestyle choices. The development and implementation of the needs assessment will require provision of the necessary resources to the structures that will have this task, as well as clarifying responsibilities in relation to SECPAH and CEPAH. In the medium and long term, it will be necessary to create a referral system, strengthen cooperation between institutions from different sectors (social, health, education), and at different levels (central, county, local), strengthen case management for adults with disabilities, and, above all, develop and diversify services for people with disabilities. Also, the medical-psychosocial criteria for classification into degree and type of disability require constant updating in line with progress in the field of medicine, 12 but also a continuous approach to the concept of disability, so that the assessment process can establish people’s real need for support and functional potential. Chapter 4 I 131 132 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 5. The disability determination in Romania259 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE This chapter is dedicated to the fourth core Romania implements a multidisciplinary implementation phase of the delivery chain of procedure for disability degree classification. Unlike Romania’s disability assessment system, namely the most countries, Romania has separate processes for disability determination, that is classification of the assessing disability (core phase 3) and determining degree and type of deficiency. The objective of this disability (core phase 4). Thus, the disability chapter is to describe and to analyze the procedures, assessment is carried out by SECPAH, a structure tools and practices used by the Commission for within DGASPC, as presented in Chapter 4. Then, Assessing Adults with Disabilities (CEPAH), that is the decision on the disability degree classification responsible for classifying in a degree and type of (determination) is taken by CEPAH, a structure deficiency and promoting the rights of people with subordinated to the County Council, respectively to disabilities.260 the Local Councils for the districts of Bucharest. The 259 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 260 Art. 85, para. 3 of Law No. 448/2006 on the protection and promotion of the rights of people with disabilities, republished, as subsequently amended and supplemented. Chapter 5 I 133 determination phase is the subject of this chapter. identifies the problems with the approach, as People with disabilities are entitled to the rights reported by CEPAH specialists in focus groups provided for by the law261 based on the classification and the opinion survey Q3B, as well as by CEPAH of the disability degree, in relation to the deficiency presidents who answered to the institutional degree. Thus, this chapter presents the process and survey Q3A. The analysis relates to the legislative the methodology applied to determine the eligibility requirements, but also to the requirements of for granting the rights and benefits for people with the Convention on the Rights of Persons with disabilities in Romania. Disabilities (UNCRPD) and the World Health Along with a general description of the steps Organization’s (WHO) International Classification in the process for the classification in a deficiency of Functioning, Disability and Health (ICF). degree undertaken by CEPAH, this chapter also 5.1. The steps of the disability determination The CEPAH is a specialized body of the County 5.1.1. Sending the Files from SECPAH to Council, or, of the Local Council of the district of CEPAH Bucharest, with decision-making activity in matters of classification of adults in degree and type of Core phase 4 of the classification in a degree of deficiency. Such commissions operate in each of the deficiency (disability determination) begins with 41 county municipalities in the country, as well as in the completion of core phase 3 of the comprehensive the 6 districts of Bucharest. assessment conducted by SECPAH. The steps of The key duties of CEPAH, as outlined also phase 3 are discussed in detail in Chapter 4. Once in Section 1.2.1, are as follows:262 (i) determines SECPAH completes the assessment, the applicant’s the degree and type of disability and the term of file is forwarded to the CEPAH secretariat. validity of the certificate, where applicable, the SECPAH delivers the files accompanied by the date of onset of the disability, the professional results of the comprehensive assessment, namely orientation of the adult with disabilities, based on the comprehensive assessment report (which also the SECPAH comprehensive assessment report; (ii) includes the recommendation for classification establishes the protective measures of the adult with or non-classification in a degree and type of disabilities, in accordance with the law; (iii) revokes deficiency), the Individual Social Rehabilitation or replaces the protection measure established, in and Integration Program (PIRIS) and sometimes the accordance with the law, if the circumstances that Individual Service Plan (ISP). led to its establishment have changed; (iv) settles The secretariat registers the application in its the applications for the issuance of the certificate of own Register of Records, ensures that the files professional personal assistant; (v) informs the adult are complete and sends them to the assessment with disabilities or his/her legal representative commission, in order to establish the classification/ of the protective measures established and the non-classification in a degree and type of obligations incumbent on them; (vi) promotes the deficiency.263 The file transmission system differs rights of persons with disabilities in all activities from one county to another. Most files are submitted that they undertake; performs any other duties on paper, while some counties submit the data (at provided by the law. least some of the data) in electronic format. The CEPAH secretariat is provided by the staff that is part of the DGASPC structure.264 More details on the activities of CEPAH secretariat can be found in Chapter 9, Section 9.3.3. How are the data managed and archived at the level of CEPAH is further analyzed in Section 9.3.5. It is to be noted that the practices regarding the information management differ considerably among counties. 261 Law no. 448/2006, Art. 85, para. 1. 262 Law no. 448/2006, Art. 87, para. 1. 263 GD no. 430/2008, Art. 15, para. (1). 264 Law no. 448/2006, Art. 85, para. 9. 134 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 5.1.2 The Process for the Classification of over the last four years (2017-2020), as follows: 8 Adults in a Disability Degree CEPAHs changed their composition only once (one or more members), 5 commissions changed their The organization and operation of CEPAH composition twice, and 4 changed their composition are regulated by Law no. 448/2006 (Art. 85), three times, by a decision of the County Council, respectively GD no. 430/2008. According to these respectively the Local Council of one district of regulations, CEPAH consists of 5 members with Bucharest.267 Therefore, at the national level, changes the following specializations: a) president - a in the composition of the CEPAH were few and did specialist in medical expertise of work capacity, not follow a certain pattern (for example, every year internal medicine, family medicine or a general or every two years). practitioner; b) a medical practitioner specialized CEPAH carries out its activity in ordinary in the medical expertise of work capacity, family or extraordinary meetings, when convened by medicine or a general practitioner, proposed by the the president. Most CEPAHs (17 of the 24 that county, respectively of the Bucharest public health responded to Q3A) hold ordinary meetings once directorate; c) a representative appointed by non- a week, every week, without exception, according governmental organizations working for the benefit to the regulations.268 The other (6) CEPAHs meet in of the persons with disabilities; d) a psychologist; ordinary meetings in most weeks.269 However, the e) a social worker. The nominal composition average number of ordinary CEPAH meetings per of the assessment commissions is approved by year is 65 (higher than the number of 52 weeks per decision by the County Councils or, as the case year),270 but with significant variations at county may be, by the Local Councils of the districts of level, from a minimum of 41 to a maximum of 224 the Bucharest, with the approval of ANDPDCA. (in 2020).271 The number of extraordinary meetings Among the members of CEPAH, only the president is even more unequal between counties. On average, is part of the staff of DGASPC, without being a civil about 50 extraordinary meetings are organized servant. Most of the CEPAHs studied comply with per year,272 but while 3 counties report zero such these regulations, being composed of 5 members meetings, 7 counties reported over 52 (between with the specializations mentioned above.265 A 56 and 185), both in the pre-COVID period (2019), comprehensive analysis of the human resources of and in 2020. Therefore, the practices regarding CEPAH is available in subchapter 9.3. the organization of meetings differ significantly Highly relevant for the way in which the between counties. decision-making process of classification in a • The estimates regarding the total number of degree and type of deficiency at county level is meetings (ordinary and extraordinary) per year carried out, is the fact that CEPAHs are made up or per month is very high and with considerable of stable teams. The data provided by the CEPAH discrepancies between counties.273 With a presidents in the institutional survey Q3A indicate number of 10-11 meetings, on average, per an average member experience of approximately month, it means that CEPAHs meet every two 7 years within CEPAH.266 Also, of the 24 CEPAHs working days (or 2-3 times a week). that participated in the Q3A survey, 17 commissions underwent changes in the nominal composition 265 In the Q3A study, 19 counties and one district of Bucharest provided data on CEPAH members. Of these 20 CEPAHs, 2 commissions have 6 members (AG and MM), while one has 4 members. 266 The average experience within CEPAH is 82 months, with a standard deviation of 62 months. 267 According to GD no. 430/2008, art. 8, para. (2). 268 GD no. 430/2008, art. 9, para. (2). 269 One CEPAH (out of 24) did not respond. 270 Standard deviation of 36, in 2019, respectively 40 ordinary meetings, in 2020. 271 Estimates provided by the CEPAH presidents in the Q3A questionnaires, regarding the years 2019 and 2020. Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 19 counties and 2 districts of Bucharest, January-February 2021. 272 With an average value of 58 extraordinary meetings, standard deviation of 60, in 2019, respectively an average of 49 and a standard deviation of 59, in 2020. 273 At the level of one month, the total number of meetings reported at county level was between 4 and 21, in November 2020. Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 16 counties and 1 district of Bucharest, January-February 2021. Chapter 5 I 135 Figure 24: Change of practices in the organization of CEPAH meetings, during the COVID-19 pandemic, by type of meetings, according to the estimates provided by CEPAH presidents (number of meetings/files/minutes) 202.7 190.3 140.4 106.7 64.2 64.0 35.2 29.8 5.7 5.3 5.1 4.5 Number of Average number Average number Number of Average number Average number meetings per of files settled per of minutes per meetings per of files settled per of minutes per month meeting meeting month meeting meeting ORDINARY MEETINGS EXTRAORDINARY MEETINGS November 2019 (or a typical pre-COVID month November 2019 (during COVID-19 pandemic) Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 15 counties and 4 districts of Bucharest, January-February 2021. • Figure 24 shows how CEPAH’s practices meetings and the number of cases that were regarding the organization of meetings during settled (in order to calculate, for example, the the pandemic changed, with the introduction workload). of new measures of social distancing and the • There is no statistically significant correlation interruption of interactions with the applicants. between the average duration of a meeting (in The estimates of the CEPAH presidents indicate minutes) and the number of cases settled per a slight decrease in the number of meetings in meeting. For example, in November 2019, while 2020 compared to the pre-COVID period (2019), one CEPAH reports that in a typical 120-minute from the total number of meetings (ordinary meeting it settled 100 cases, on average, another and extraordinary) of 127 to 115, on average, per CEPAH reports that it reviewed the classification year.274 Also, if the average total time for CEPAH for 25 cases in 180 minutes. Of course, the level meetings in November 2019 was about 31 of complexity may differ among cases, but the hours/month, in November 2020 it was reduced lack of correlation remains noteworthy. to 25 hours/month. • The analysis of the workload of CEPAH • Therefore, the typical ordinary meeting lasts members, presented in Section 9.3.1 shows over 3 hours in which the commission settles 64 that: (i) there is no correlation between the cases, while the typical extraordinary meeting total number of CEPAH meetings (ordinary has around 2 hours in which 30-35 cases are and extraordinary) and the total number of analyzed, as can be seen in the figure below. cases settled, which means that the number Also, typically, an assessment commission for of meetings is randomly increased in some adults gathers in 5-6 ordinary meetings and 4-5 counties; (ii) the random increase in the number extraordinary meetings, per month. of CEPAH meetings held per month does not • The analysis of non-responses provides compensate for, but rather widens the existing an indication that many CEPAHs do not discrepancies between counties with regard systematically monitor their own activity. Thus, to the monthly payments granted to CEPAH 24 CEPAHs responded to the Q3A questionnaire. members as meeting allowance.275 Of these, 23 said whether they complied with • Apart from ordinary and extraordinary meetings, the regulation on the obligation to meet weekly only in 2 counties and one district in Bucharest,276 or not. The answers go down to 20-22 for the CEPAH also organizes consultation meetings number of ordinary meetings, and 18-19 for attended by all members (or most of them). They the number of extraordinary meetings. And, are organized “sometimes, when possible”, last the number is reduced to 15 when we refer to between 10 and 30 minutes and, usually, deal the CEPAHs that reported both the number of 274 Standard deviations of 60, in 2019, respectively 61 meetings, in 2020. 275 The members of CEPAH (including the president) are entitled to a meeting allowance equivalent to 1 percent of the allowance of the President of the County Council and of the Mayors of the districts of Bucharest. Law no. 136/2012 approving EGO no. 84/2010 supplementing and amending Law no. 448/2006. 276 These are AG, IS and B_S4. 136 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM with topics such as making teamwork more Under these circumstances, it is obvious that a legal efficient or drafting statements of defense or provision such as the one in Art. 89 (para. 1 and 2) of explanatory statements/substantiation of the Law no. 448/2006, according to which CEPAH has CEPAH decision for the courts. the obligation to draw up the PIRIS in collaboration with the person with disabilities or his/her legal Decision-making process in CEPAH is not representative, is not respected.278 participatory, with little or no interaction with the The decision on the classification/non- applicants. The law allows the applicants and their classification into a deficiency type and degree representatives to participate in the works of the is taken in too short a time to be thorough. With commission, with the agreement of the president.277 regard to the average time taken by CEPAH to In reality, a very small number of applicants settle a case, we made three types of estimates. benefited from this provision. Out of 19 CEPAHs The first one is based on estimates provided by that provided data (in Q3A), only 3 commission CEPAH presidents in the institutional survey Q3A, presidents responded that 2-3 applicants (or according to which the average time allocated per representative) were invited to attend 2-4 meetings file is 7.3 minutes.279 The second type of estimate is per month. And this was the pre-COVID situation based on the data provided on the average number in November 2019. In 2020, all interaction was cut of minutes per meeting and the average number of off, not just physically, but also online. The members cases settled per meeting, for November 2019 (pre- of the commission see no point in the persons with COVID) compared to November 2020 (during the disabilities participation, stating in focus groups pandemic). In both reference periods, the results that they have no reason to interact with the indicate about 3 minutes per file (less than half applicants, as either commissions` meetings are not the time estimated by the CEPAH presidents). The public, or the applicants have already been assessed results of these estimates are shown in Figure 25 and and seen by SECPAH. Consequently, none of the indicate an average time per file of between 2 and CEPAHs studied has a specific approved procedure 15 minutes with large differences between counties. (or paragraph in the general procedure) for the participation of applicants in CEPAH meetings. Figure 25: Average time spent by the Commission on each case, in minutes 15 15 Time taken by CEPAH to settle a case, estimates provided by CEPAH presidents Estimates calculated by dividing the average number of minutes per meeting by the average number of cases settled per meeting, in November 2020 Time taken by CEPAH to settle a case, overall average 10 10 10 10 10 7.0 6.7 5.6 5.8 5.0 4.0 4.3 4.0 4.5 4.0 4.0 3.1 3.5 3.0 3.0 3.0 2.0 2.3 2.3 2.0 1.5 1.2 SI B_S5 MH IS AB HD BC BH NT BR CJ TL BN GJ GL DB DJ AG B_S4 AR Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 18 counties and 2 districts of Bucharest, who reported the necessary data, January-February 2021. Finally, the third estimate used a theoretical type of estimation, the average time allocated per time available to CEPAH members (based on their file is 3.5 minutes. Under these circumstances, it employment contracts) and the total number of is reasonable to consider that CEPAH makes the cases settled per month.280 According to this third determination in a case (including the degree, type, 277 GD no. 430/2008, as subsequently amended and supplemented, art 9, para. (3). 278 In practice, SECPAHs have taken on the task of developing PIRIS, but not necessarily in collaboration with the person with disabilities or his/her legal representative, as discussed in subchapter 6.2. 279 Standard deviation of 4.8 minutes. Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 14 counties and 1 district of Bucharest, January-February 2021. 280 This estimate is developed in Chapter 9, Section 9.3.1 CEPAH workload. Chapter 5 I 137 PIRIS, etc.) in about 5-6 minutes (see also Figure 25). level of 8.8, on a scale of 1-not at all to 10-total).281 Given the large number of documents on file, the The absence of guidance procedures or rules complexity of the procedure for the classification is accompanied by the absence of a substantiation of the deficiency degree and type, and the fact that accompanying the disability certificate explaining the decision should be collective, it is obvious that a the reasons for the classification/non-classification duration of about 5 minutes is too short for a sound decisions and how the degree of deficiency was decision. determined (see also Chapter 7). The main tool The decision-making process is strictly provided for in the current legislation for recording confidential and only authorized personnel have in detail the decision-making process within access to the applicants` data. In about half of the the CEPAH is the minutes of the meeting. The counties (11 out of 23 in the Q3A sample), there CEPAH secretariat should draw up the minutes are no formal procedures in place to ensure the of the meeting and keep a record of these minutes. protection of applicants` personal data (Figure The institutional survey Q3A asked the CEPAH 29 in Section 5.2.2). However, despite the lack of presidents to provide anonymized minutes of the procedures, according to the CEPAH opinion survey last two CEPAH meetings, as part of the response (Q3B) and interviews, data confidentiality and package. Eight counties responded to this request; respect for privacy in the process of submission and a typical example of CEPAH minutes is provided assessment of the files are always fully respected, in Figure 26. in line with Art. 31 of the UNCRPD (at an average Figure 26: Minutes of a 3-hour CEPAH meeting involving decisions for 65 people with disabilities 281 Standard deviation of 1.6. Opinion survey Q3B: Practices and experiences of CEPAH members (N=49), from 24 counties and 2 districts of Bucharest, January-February 2021. 138 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The analysis of the collected sample of meeting and advising persons challenging the certificate, minutes showed that, most often, the minutes are coordinating the grievance redress mechanism handwritten282 and tend to focus on procedural related to the disability assessment and aspects, such as the introduction of the commission determination (if such a mechanism were to be members and president, their signatures, the agenda set up), liaising with the Higher Commission on of the meeting, the number of files; the decision for requests for methodological coordination (case-by- the classification of the disability degree and type case clarifications, organization and functioning in aggregate format (on the model in Figure 26) or a of SECPAH/CEPAH, interpretation of legislation, list of all certificates. The comments section (if any) etc.) or providing expert opinions for the courts in is empty or provides information on other types cases where the certificate is challenged. of decisions, such as suspension of a protective measure, cancellation of a certificate due to the 5.1.3. Adapting the Determination Process death of the person or specific references to the for “Hard to Reach” Population completion of certain files. The voice of people with disabilities is completely missing, no dialogue or The procedure for classifying in a deficiency degree discussion is recorded, no events are described, all and type does not benefit from adaptations in any decisions seem to be taken unanimously, and there county. Only two CEPAH presidents (out of 20 who is no substantiation for the decisions. Under these answered the question) reported having specific circumstances, the drafting of the expert opinions procedures/practices or sections/chapters of the requested by the courts is technically deficient (see general procedure by which the classification of also Chapter 7). In general, such a non-transparent immobilized people is carried out (Figure 27). But, approach can open the door to unwanted the lack of tailored communication for vulnerable interference, political manipulation and corruption. groups was mentioned as a barrier, both in interviews So, the decision-making process within CEPAH with people with disabilities and with NGOs, is not transparent. Including a legal adviser in the regarding this phase of the certification process as membership of SECPAH/CEPAH could bring in all previous phases. Therefore, the approach to value in the transparency of the decision-making determining disability in Romania does not comply process for disability degree classification. The legal with the requirements of UNCRPD, all the more so adviser`s responsibilities could include: drafting after the start of the COVID-19 pandemic, following the explanatory statements/ substantiations for which people`s interaction with the assessment the CEPAH decisions, ensuring the quality of commission and their already limited participation the minutes of the CEPAH meetings, informing in the approach were completely interrupted. 282 Of the eight counties that provided minutes of the CEPAH meetings, only one uses a standard electronic format extracted from D-Smart, and another has a combination of a standard electronic page and the rest is handwritten. Chapter 5 I 139 Figure 27: Number of CEPAH that adapted for vulnerable groups the procedure for classifying adults in degree and type of deficiency (number of counties) Are there specific procedures/practices or sections/chapters in the general procedure 0 0 0 0 0 0 2 0 for the classification by degree and type of deficiency of the following groups...? (UNCRPD, Art. 5, 12) People in social institutions Persons admitted to Homeless people Persons in prison Persons under Persons with a low level Immobilized persons Young people for adults (centers, psychiatric hospitals trusteeship/guardianship of education (8 classes 18-26 years old sheltered housing) or less) Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH), January- February 2021. 5.1.4. Communication of the Result of the result (by mail) to persons with disabilities 5.2. The disability determination procedure in Romania and Delivery of Documents to is, on average, 7-8 days, at the sample level.285 Furthermore, according to the information Beneficiaries In Romania, the classification of adults in a degree If, from the analysis of the file and the recorded in the Register of minutes, almost all and type of deficiency is based on the assessment comprehensive assessment report (drawn up by At the meetings, the assessment commission CEPAH secretariats (23 out of 27 that participated of six mandatory areas289 and is carried out based SECPAH), the assessment commission finds that makes the final decisions on (1) classification or in the institutional survey Q3C) reported that they on the medical-psychosocial criteria,290 analyzed the information is insufficient to take a decision, non-classification in a degree of disability; (2) the always286 manage to meet the legal deadlines, in Chapter 4. This subchapter looks at how the it sends back the documents to SECPAH for professional orientation certificate, for persons namely, to: assessment commissions carry out the process of reconsideration and possible completion.291 Such requesting this type of assessment; and (3) the i. draw up the disability certificates and the classifying in a degree and type of disability, how situations are very rare. According to the reports of services/actions recommended in PIRIS, including professional orientation certificates, no later they analyze the file, how they use the criteria, how the CEPAH presidents in the Q3A questionnaires, protective measures, such as personal assistant/ than 3 working days after the date of the CEPAH they determine the final resolutions, and how they the share of files sent back to SECPAH represents 1 professional personal assistant or social assistance meeting;287 manage the risk of error in the decision-making percent of the total number of files forwarded to the through residential or day care centers, public or ii. notify by mail, with acknowledgement of process. commission. private.283 Finally, the CEPAH secretariat notifies receipt, to the person with disabilities or, where Regarding the quality of the information individuals of the issuance of the certificate and applicable, his/her parents/legal guardian, 5.2.1. Entries from SECPAH provided by SECPAH, the CEPAH members sends the approved documents by mail.284 personal assistant or professional personal participating in the opinion survey Q3B (Figure 28) All CEPAH presidents in the counties that took assistant, within 5 working days of the date set The file prepared by SECPAH is registered and indicate that (medical) information on impairments/ part in the Q3A institutional survey reported that for drafting the documents approved by the checked by the secretariat of the assessment deficiencies is satisfactory (with an average score of they had no difficulty in meeting, for 99 percent assessment commission;288 commission. In some counties (5 of the 27 in the 7.4, on a scale of 1-not at all, 10-total). Instead, in of applicants, the deadline of a maximum of 15 Q3C sample), the CEPAH secretariat may refuse iii. the person may choose to collect the documents their opinion, the methodology for establishing the working days from the date of referral of the file by the submission/registration of SECPAH files, if in person from the CEPAH secretariat or to types of disability needs to be revised, especially SECPAH, to complete the disability determination. they are not complete. Yet, only one county (AG) receive the documents by other means than with regard to the mental and psychic types. In In fact, the representatives of the CEPAH secretariats states in the Q3C institutional survey that it has a by post, with acknowledgement of receipt, as this regard, CEPAH members expressed a similar reported that the time from the registration of the specific procedure for such situations. However, in required by the law. opinion in the survey Q3B, because ”for adults file in the Register of Records to the communication all counties, the secretariat forwards the files to the there has not been legislative continuity” and ”there commission which is responsible for reviewing the is a need for an analysis of the necessity of the types files for classification in a disability degree and type. reported, so that their number is not too high, but to 283 GD no. 430/2008, Art. 2. help policy planning in the field”.292 284 GD no. 430/2008, Art. 13. 285 The variation across counties is between 2 and 30 days. Institutional study Q3C: The outcome indicators of the disability determination process for the CEPAH Secretariat, in 22 counties and 2 districts of Bucharest, January-February 2021. 289 Assessment of social, medical, psychological, vocational or professional skills, level of education, as well as skills and level of social integration, according to GD no. 268/2007, art. 48, respectively Order no. 2298/2012, art. 4. 286 The other 4 counties manage to meet the legal requirements “in most cases” (3 counties) or “sometimes” (1 county), and the person cannot opt for other ways of sending the documents than by post, with acknowledgement of receipt, as mentioned in GD no. 290 Joint Order of the Minister of Labor, Family and Equal Opportunities and the Minister of Public Health No. 762/1.992/2007 430/2008. approving the medical-psychosocial criteria based on which the degree of disability is determined, with subsequent amendments and supplements. 287 GD no. 430/2008, Art. 15, para. (2e). 291 GD no. 430/2008, Art. 3, para. (2). 288 GD no. 430/2008, Art. 15, para. (3). 292 Quotes from Q3B questionnaires. 140 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 5 I 141 Figure 28: Opinions of CEPAH members on the comprehensive assessment tools used by SECPAH (average scores on a scale from 1-none to 10-total) On a scale from 1-not at all to 10-total, to what extent do you agree with the statements bellow…? 7.4 6.8 6.2 5.8 3.0 2.7 1 2 3 4 5 6 Currently, is there a The assessment tools currently used by template for completing the SECPAH allow the collection of relevant On a scale of comprehensive assessment information for the estimation from an ICF 1-none to 10-total, report, guidelines to ensure Are the types perspective of ... how much a uniform way of working of disability influence does at the national level, and approved by law the social inquiry assessment tools that can be clearly defined information used for the six mandatory and are there received from fields: social, medical, no difficulties, SPAS have on the psychological, vocational, at SECPAH level, classification/ educational, assessment of in assessing and non-classification skills and of social integration reporting them deficiencies/ activity participation solution given by level? to ANDPDCA? impairments limitations restrictions CEPAH? 1 2 3 4 5 6 Source: Opinion survey Q3B: Practices and experiences of CEPAH members (N=43), from 24 counties and 2 districts of Bucharest, January-February 2021. Another major shortcoming is the lack of assessment commission based on the convening scientifically based tools, and the CEPAH members notice signed by its president.293 In the majority mention mainly tools for vocational assessment, of the counties (18 out of 23) there is no approved education level assessment and social integration procedure/paragraph in the general procedure on level assessment (also highlighted in the analysis how to determine which files enter a particular in Chapter 4). That is why, according to CEPAH CEPAH meeting, as shown in Figure 29. The members, the assessment of participation decision on which files are selected for classification restrictions and the estimation of the possibility of per CEPAH meeting is made in different ways social (re)integration can be considered deficient. from county to county. Either all files collected in the period between the previous meeting and 5.2.2. How the Assessment Commissions this meeting are entered (in 8 counties), or they Work are decided by the commission secretariat (in 6 counties) or by the CEPAH president (in 4 counties) The CEPAH secretariat sends the agenda and or in other ways (in 4 other counties), e.g., they are the date of the meeting to the members of the selected by SECPAH. 293 GD no. 430/2008, Art. 15, para. (4) and (2b). 142 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 29: Management of files during the phase of disability determination, according to CEPAH presidents (number) Is there a procedure on how to determine which files Is there a formal procedure in place to ensure the enter a particular CEPAH meeting? protection of applicants’ personal data? 23 23 18 12 11 5 0 0 Yes No Yes No Who takes the decision on which files enter a particular Who have access to consult the files before the CEPAH CEPAH meeting? meetings? 4 No, the files are only 13 3. Another way sent during the 6 meetings 2. CEPAH secretariat 6 The files can be 5 consulted but only at the DGASPC 5 1. CEPAH president 4 headquarters 5 Any meeting The files are sent/ includes all files 8 received before the 12 collected in the meetings period between 0 0 meetings CEPAH members CEPAH president Have the applicants access to consult their file? 13 After CEPAH decided 8 Before the CEPAH 21 meeting in which they are scheduled 2 0 No Yes Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 21 counties and 2 districts of Bucharest, who reported the necessary data, January-February 2021. The applicants can consult their file prior Before the CEPAH meetings, the presidents of to the meeting in which they are scheduled for the commissions have access to the files, in most classification in only two counties (IS and OT), that counties (Figure 29); in 12 (out of 23) counties, the have also declared that they have a special place for secretariat sends the files to the presidents, and in this purpose. Alongside these, another 6 CEPAH 5 counties the presidents can consult the files only presidents report that files become available to at the DGASPC office. The other members of the beneficiaries, for consultation, after the commission commissions have much less access to the files, makes the classification decision. However, these before the meetings; in 5 counties the files are sent counties do not have a special place for this purpose. to them by the secretariat, and in 5 counties they can Practices regarding access to files by members of only consult them at the DGASPC office. assessment commissions differ between counties. Chapter 5 I 143 Figure 30: Main sources of information for verifying the medical-psychosocial criteria for the classification of the deficiency degree and type, according to CEPAH presidents (number) 23 21 19 17 17 16 3 2 2 Medical Interview with SECPAH Interview with Psychological SECPAH Social inquiry Interview SECPAH documents PwD/PwD’s comprehensive PwD/PwD’s file / Clinical comprehensive conducted by with PwD/ comprehensive on file representative assessment representative psychological assessment SPAS PwD’s assessment report evaluation report representative report report Medical criteria Psychological citeria Social criteria Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 21 counties and 2 districts of Bucharest, who reported the necessary data, January-February 2021. Notes: Multiple choice question, which is why the sum of the bars for each type of criteria may exceed 23, i.e. the number of CEPAH presidents who answered these questions in the Q3A questionnaire. In fact, the 24 CEPAHs studied (in the Q3A) can be on the medical-psychosocial criteria, as provided classified into four groups with different practices.294 by the law. Figure 30 shows which are the main Thus, the first group includes 5 CEPAHs where sources of information, i.e. the documents that the both the president and the other members receive commissions consult most often, to support their the files for examination before the meetings. The decisions. As reported by the CEPAH presidents in second group consists of 7 commissions in which the Q3A questionnaires, the dominant practice is only the president has access to the files before the to review/corroborate the medical/psychological meetings, while the other members only see them documents296 with the comprehensive assessment during the meetings. The third group includes report prepared by SECPAH, in order to verify the 5 CEPAHs which provide access to files to the medical/psychological criteria. Similarly, both the president and to the members before the meetings, social inquiry and the comprehensive assessment but only if consulted at the DGASPC office, while report are used to check the social criteria. Most the fourth group of 6 CEPAHs only have access to likely, this is the working method of the CEPAH the files during the meetings. presidents who have access to the files before the In other words, the prevailing practice at the meetings. Such a verification algorithm applied national level is that only the president of the to 64 cases within 190-200 minutes would be very CEPAH can consult the files before the meetings. difficult for any specialist, especially as the files are The other members, as a rule, have access to the files paper-based, in most cases, and do not allow for a only during the meetings. Therefore, the typical quick or targeted search. situation in the adult assessment commissions can As outlined in Section 5.1.2, decisions are be described as follows: a group of 5 specialists get based on document analysis, interviews with the together to make decisions that affect the lives of applicants and/or their representatives are rarely other people, and 4 of them receive the files only used (Figure 30). Besides, there would not even be during the meetings, while in a meeting of 190- enough time to conduct interviews/interactions 200 minutes solutions have to be decided for 64 with all applicants (or more numerous categories of cases with situations ranging from mild to very applicants) during the meetings. complex.295 The quality of the information in the medical/ Once they receive the files, the commissions psychological documents is assessed positively by analyze them and establish the solutions for the CEPAH presidents (in the Q3A questionnaires). classifying the degree and type of deficiency based It rarely happens that the medical documents have 294 One assessment commission did not answer the question. 295 See also section 5.1.2. 296 Including the report of the specialized medical practitioner, the family physician’s referral letter, medical tests and investigations, hospital discharge reports. 144 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM conclusions/ diagnoses that are either vague or assessment report. In the event of a discrepancy, unclear, conflicting,297 potentially erroneous or the following measures are usually taken: i) even fraudulent.298 Such situations are reported the commission recommends a psychological to be more common in relation to neurological, assessment to be carried out by a third party, ii) ophthalmological and psychiatric disorders. another report is requested from a psychologist Correlated, only 4 CEPAHs (out of 24 in the sample) at a university clinic/psychiatric hospital, iii) have an approved procedure (or paragraph in the psychologist of the commission conducts an the general procedure) for such situations. Also, interview with the person concerned and decides according to CEPAH presidents, there are rare cases on classification scores (usually, GAFS and MMSE of inconsistency between the CEPAH physicians’ scores). assessment (based on the documents on file) and The social inquiry, although used by most the assessment made in the report of the specialized CEPAHs as the main source for the social medical practitioner. Very rarely is there a disparity assessment, has little influence on the solution for between the CEPAH physician`s assessment and the classification/non-classification in a disability the SECPAH physician`s assessment (from the degree, as shown in Figure 28 (bar 6) in Section 5.2.1. comprehensive assessment report).299 Consequently, The reason given was that most social inquiries only 3 CEPAHs (out of 24) have a specific procedure do not provide an adequate basis for decision- for resolving inconsistencies between medical making, because they often provide random and opinions. The practice used in such situations by insufficient information for a good understanding all commissions is to request the completion of the of people`s performance in their living environment file with the results of paraclinical investigations (including environmental factors), a perception or a new medical report, carried out at any health that is consistent with the findings of the analysis care facility/physician of the applicant`s choice. in subchapter 3.3. And in order to remedy this Furthermore: situation, first of all, the social inquiry framework model needs to be improved (according to 55 • the president of the commission consults with percent of CEPAH members), local social workers the SECPAH`s physician (in 14 counties), should be trained on the rights of people with • the commission requires tests to be carried out disabilities and the ICF (46 percent), and SPASs and/or a new medical report from a specific should hire professional social workers to draw up medical establishment/physician to be obtained social inquiry and not people with social assistance (in 10 counties) responsibilities (42 percent).300 Opinions aside, the • the commission requests additional information fact is that the lack of clear criteria on how to use from the guardians/caregivers of the person the information presented in the social inquiry concerned (in 7 counties) hinders its use in the disability determination • the commission conducts an in-depth interview process. There is a lack of connection between the with the applicant (in 4 counties) information in the social inquiry (information that • the president of the commission consults/ predominantly refers to the person`s limitations in communicates with the specialized medical activity and participation, his or her living context practitioner who made the initial assessment (in and environmental factors) and the classification of 2 counties). the disability degree and type. The social inquiries drawn up by SPAS rarely provide consistent The situation is largely similar with regard to information on the degree of autonomy and social the data used for the psychological assessment. integration of the person. Instead, the conclusions The clinical assessment report and the SECPAH of the social inquiry are often missing or formulated comprehensive assessment report are used to apply in an incomplete or vague way, such as: “it is the psychological assessment criteria. As with recommended to classify the person in a degree of the medical assessments, CEPAH psychological disability”. assessments correspond to the SECPAH psychological assessment in the comprehensive 297 When two or more medical reports from different specialized medical practitioners are requested or provided. 298 Average values equal to 2, on a scale from 1-very rarely to 5-very often. 299 Average values equal to 1.5, on a scale from 1-very rarely to 5-very often. 300 Multiple choice question. Opinion survey Q3B: Practices and experiences of CEPAH members (N=45), from 24 counties and 2 districts of Bucharest, January-February 2021. Chapter 5 I 145 “We have 400 files/month, we meet 2-3 times/week. All files are reviewed by the president and we discuss only the very complicated cases with the members of the 5.1 commission. The problem with SECPAH, there are many situations where the real situation is different from what appears in the papers and colleagues tell me and point out to me where the problem is. When the papers are overstated compared to the reality on the ground, I always ask for information, because such cases have the potential to end up in court. When I have concerns, I call the mayor`s office and ask the social worker to go to that person`s house again and check. For example, he/she finds out from the village shop that X went shopping at the village shop two days ago, even though it says in the social inquiry that he/she is bedridden!” (Focus group CEPAH 1) As the assessment of participation restrictions 5.2.3. How Are the Solutions for the and the estimation of the possibility of social (re)integration are considered deficient by the Disability Degree Classification/Non- majority of the CEPAH members, we asked in the classification Determined opinion survey Q3B, whether the introduction of a self-assessment of the people with disabilities The general picture of the medico-psychosocial own situation, as a new working tool, could help criteria that the assessment commissions the commission in the process of deciding on the predominantly use to fulfill their main tasks is solution for disability degree classification/non- given in Figure 31. For the majority of CEPAHs (16 classification. The answer was a resounding no out of 24 in the sample), the medical criteria are the from 96 percent of respondents. The explanation key determinants in establishing the classification/ given by the CEPAH members was that the people non-classification in a degree and type of deficiency, with disabilities would be subjective, would not as well as in granting the right to a personal tell the truth, would not know the law and/or assistant (15 out of 24), according to the presidents would strategically manipulate the opportunity to of these commissions. The main justification for the exaggerate their own situation. In other words, the preference for the medical criteria, also frequently area of participation restrictions is perceived as the mentioned in the focus groups, is the belief that: most unsatisfactory area assessed by the specialists, “The medical conditions are easier to identify and but the partnership with the people assessed is can be more easily quantified by approved tests”.301 not considered as a possible solution to adjust the approach. Figure 31: Medical-psychosocial criteria predominantly used by CEPAH, according to CEPAH presidents (number) 16 16 15 12 12 12 12 8 10 8 8 8 7 7 6 6 5 5 7 5 4 5 3 3 ... classification by ... classification by ... granting the ... granting a personal ... granting a ... implementing a deficiency degree deficiency type professional assistant professional personal protective measure orientation certificate assistant Medical criteria Social criteria (economic situation, housing services) Criteria regarding personal autonomy and level Other psychosocial (including professional skills and of social integration level of education Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 22 counties and 2 districts of Bucharest, who reported the necessary data, January-February 2021. Note: Multiple choice question, which is why the sum of the bars for each CEPAH task may exceed 24, i.e. the number of CEPAH presidents who answered these questions in the Q3A questionnaire. 301 Focus group CEPAH 2. 146 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The criteria relating to the level of social the current medico-psychosocial criteria to integration (degree of dependency) play a dominant be sufficiently inclusive, i.e. all people whose role in commission decisions on entitlement to a functioning is impaired can meet the criteria. The personal assistant and professional orientation. The other 66 percent of the total Q3B sample believe that only multi-disciplinary decision taken in a large the criteria are not inclusive enough, because there number of counties (half of the counties studied), are some incomplete or dysfunctional criteria and, taking into account the medical, social criteria and therefore, they need to be revised, and they mention the degree of dependency, is that related to the a long list of conditions or situations for which they approval of the protective measures. had difficulties in classification. Among these, the Only a third of the CEPAH members consider following were mentioned by several respondents: “various medical diagnoses which, although affecting social functioning, cannot be classified”; “people with oncological conditions during chemotherapy”; “for oncological conditions there is no dedicated chapter”; “the conditions for neoplasms must be changed”; “the criteria are not appropriate for some rare diseases causing disability”; “genetic diseases and rare diseases cause disability difficult to assess according to the criteria”; “Oxygen dependence is not classifiable”; “post-traumatic conditions in adulthood may not meet the criteria”; “persons severely affected in one eye”; “personality disorder over the age of 26”; “ankylosing gonarthrosis”; “mental retardation and schizophrenia over the age of 35”; “people with irreversible mental disorders, who do not fall into the category of under 26 or under 35”; “criteria for cognitive impairment (dementia), functional parameters are unclear, permissive”; 5.2 “the criteria for ophthalmological conditions, regarding visual acuity and visual field, are permissive”; “the possibility of classifying plegic deficit regardless of damage, whereas paretic deficit can only be classified as a result of a stroke or cardiovascular disease” “persons with disabling conditions, but without early onset”; “the age at which the degree and type of disability can be classified for some conditions is not clearly specified. Youthful onset is a vague term”; “where a person has multiple diagnoses, which taken separately do not fit or fit to a lesser degree than the actual need given by the complex situation”; “there are cases where applying the criteria results in a lower degree than the real needs identified, and dependence on other people cannot be fully taken into account”; “an elderly person with a degenerative disease of old age, who carried out lucrative activities, has been socially involved, is classified as a person with disabilities based on the biological age deterioration (diagnosed by the psychiatrist as mixed dementia), is entitled to rights and facilities and may also receive an invalidity pension. And a middle- aged person with no income, no health insurance, with an osteoarticular condition from adolescence, but without a medical document to prove it, does not qualify as person with disabilities”; “the social component loosely represented in those who are conditional on being classified as having no income, e.g. some psychiatric conditions”. (Quotes from Q3B questionnaires) Chapter 5 I 147 Figure 32: However, according to the dominant opinion among CEPAH members, currently, the medical model is still dominant in classifying the degree and type of disability for adults At present, in Romania, the disability determination is primarily based on...? (% of CEPAH members) Undecided 4% Bio-pshycosocial model 18% Medical model 78% Source: Opinion survey Q3B: Practices and experiences of CEPAH members (N=46), from 24 counties and 2 districts of Bucharest, January-February 2021. The decisions of CEPAH are taken as a team, the meetings, has more time to consult the files and during the meetings, with a majority vote, according contributes more to those decisions, based on the to Art. 9 (para. 7) of GD no. 430/2008. However, medical assessment. All other CEPAH decisions Table 10 shows that half of the 36 SECPAH presidents are made as a team, in most counties, but the team who responded to the Q3A questionnaire reported does not necessarily include all five members of the that, there is one member of the commission commission, but may vary in composition from one who contributes more than the others. Namely type of decision to another and from one county to the specialized medical practitioner has a larger another. contribution to the decisions for classification/ For example, 6 CEPAH presidents indicate that non-classification into a deficiency degree and type. the decision on the approval of a protective measure, Specifically, the president of the commission, who such as admission in a residential center, may be is a physician and who has access to the files before taken mainly by the following types of groups: Psychologist Social worker Social worker (1 county) Specialist in medical (2 countries) expertise of work capacity Internal medicine specialist or Family doctor General Psychologist practitioner Social worker (1 county) (2 counties) 148 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Table 10: How are CEPAH decisions determined, according to CEPAH presidents (number) Is there a team member of the commission (with a particular specialization) who contributes more than others? In the process to determine ... Yes No Classification or non-classification (granting of the certificate) 9 (Physician) 9 Deficiency type 8 (Physician) 10 Deficiency degree 5 (Physician) 13 Granting of the Professional Orientation Certificate 3 15 Taking a protective measure/institutionalization 6 12 PIRIS 5 13 Granting a personal assistant for the person with severe deficiencies 5 13 Granting a professional personal assistant for the person with severe 2 14 deficiencies Source: Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 17 counties and 1 district of Bucharest, who reported the necessary data, January-February 2021. Note: The sum of cells per line should be 18, which is the total number of CEPAH presidents who answered to these questions from Q3A. For smaller amounts, the difference up to 18 represents non-responses. The situations of disagreement among CEPAH the classification of the disability type and degree members about the classification of the deficiency (Figure 33). Incomplete or dysfunctional criteria are degree and type for a case are reported to be very perceived to be the main source of errors (of both rare (20 counties) or rare (3 counties), according types), as outlined in the previous section. The to the CEPAH presidents (in Q3A). And when system’s gaps follow, such as: physicians issuing they arise, majority voting is the way to settle the medical documents with vague/unclear diagnoses; differences. Correspondingly, only 3 CEPAHs the fact that the disability assessment “is carried have developed a specific approved procedure (a out based on documents, not the actual assessment paragraph in the general procedure) for handling of the person” (see also Section 5.2.2); “mismatch these situations. However, in the opinion survey between the criteria for children and adults” due to Q3B, CEPAH members gave a very high average which “situations frequently arise where the child score of 4.5 on a scale of 1 to 5, for the usefulness (under 18) is classified in a disability degree and, on of such a procedure for the current activity of the transition to adults, suddenly, changes to a lower commission.302 degree, although the person`s needs and limitations remain the same” (see also Chapter 8).303 5.2.4. Exclusion Errors and Inclusion Errors Access barriers faced by certain categories of people are more frequently cited as a source of The exclusion errors refer to cases where the exclusion errors, particularly with regard to people person`s functioning is impaired to a significant with no income, no health insurance, in isolated degree, but individuals do not receive a disability communities or without a family and support degree classification. In contrast, the inclusion errors network (see also subchapter 3.2). The specialists’ relate to situations of people who are classified in a errors of judgment are less frequently mentioned, disability degree and type, but whose functioning is but it is relevant that 42 percent of the CEPAH not impaired to a significant degree. Three quarters members perceive them as a source of inclusion of CEPAH members confirm the existence of both errors in the disability determination. exclusion and inclusion errors, in the process for 302 See also Section 9.3.4. 303 Quotes from Q3B questionnaires. Chapter 5 I 149 Figure 33: The share of CEPAH members confirming the existence of exclusion and inclusion errors within the process of disability determination, by type of error source (%) 73 71 75 75 76 68 60 42 42 32 11 4 Specialists’ errors Incomplete or System’s gaps Access barriers faced Other sources TOTAL (errors from any of judgment dysfunctional by certain categories source) criteria of people EXCLUSION ERRORS INCLUSION ERRORS Source: Opinion survey Q3B: Practices and experiences of CEPAH members (N=45), from 24 counties and 2 districts of Bucharest, January-February 2021. However, say over 90 percent of CEPAH that court decisions are not evidence of exclusion or members, regardless of source and type, inclusion errors, as court decisions are “subjective”, classification errors are only isolated cases, not made mainly based on “subjective” criteria (see also associated with certain types of deficiencies/ Chapter 7, especially Section 7.4.4). impairments. Moreover, 92 percent of them believe 5.3 “The medical criteria are still the most important, because they have a higher degree of objectivity. Social criteria are more subjective and interpretable. We leave it to the courts to decide on these cases. In our country, the Legal Department of the County Council represents us in court, we just make reports for these legal advisers. But they are not good at defending these cases. And they lose a lot of cases, ... about 10 per month” (Focus group CEPAH 2) The measures that would be needed to prevent regard to the misjudgments of the specialists, some the exclusion/inclusion errors in disability CEPAH representatives propose to “re-establish the determination, recommended by CEPAH members Higher Commission, in order to confirm/report (in Q3B), include, first of all, clarifying the criteria some unclear diagnoses”. Instead, the introduction and completing them, as “for several conditions, of an external auditing system would not be useful classification is made without taking into account because it would not improve the performance of the impairment of functioning”,304 plus applying the assessment commission, according to more than them uniformly at the national level. Secondly, three quarters of the CEPAH members participating “there should be a procedure for consulting the data, in the opinion survey Q3B. the specialists in the field and the representatives of the people with disabilities, in order to 5.2.5. The Feedback Loop of the Decision- continually assess the situation and correct the Making Process within CEPAH errors observed”. And thirdly, there should be more effective mechanisms to deal with the situations of The decision-making process within CEPAH does suspected fraud or intentional distortion of reality not incorporate a feedback mechanism, which by the applicants. Preferably, these mechanisms violates the principle of “nothing for us, without would also include the direct interaction with us”, especially as there is no interaction between the applicant or even the possibility of an actual the assessed person and the assessor and the assessment, possibly in collaboration with the approach does not include a self-assessment of specialists in the condition concerned. And, with the applicant. Only 7 CEPAH presidents (out of 24 304 The quotes in this paragraph are taken from the Q3B questionnaires. 150 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM who responded to the question, in Q3A) reported process of settling the case; (ii) and the information that they systematically record feedback from (including preferences, fears, etc.) provided by the people applying for the classification of disability applicants and their guardians/representatives degree and type. The reactions of the applicants are has very little influence on the classification/ “different, good and bad”, but mostly “challenges, non-classification solution given by CEPAH (with according to Law no. 554/2004” or “we directly an average score of 4.6, on a scale of 1-none to receive the verbal expressions of dissatisfaction with 10-total); (ii) but the person or their accompanying regard to the classification of the disability degree, guardians/representatives are informed of the the financial precariousness of the allowances, etc. explanatory statement/substantiation for the It is true, we also receive thanks when they present solution;308 (iv) and the assessment commission is themselves at the assessment or when they pick perceived satisfactorily by the applicants (with an up the certificate”. And measures to improve the average score of 6.9, on a scale from 1-very negative way of working based on the feedback received to 10-very positive).309 are usually limited to “trying to solve the request, The main difficulties encountered in interacting within the limits of the law and the budget”.305 with applicants and their guardians/representatives More generally, in Romania, the whole disability are that “people do not understand the difference assessment system lacks a grievance redress between illness and deficiency” and therefore “do mechanism306 that complements (not replaces) the not accept that certain illnesses do not classify in a formal legal channels for managing grievances, degree of deficiency”. In addition, the difficulties such as the judicial system or the organizational of explaining the solutions are mentioned, all the audit mechanism. But this subject is dealt with more so as “the applicants are frequently unwilling extensively in Chapter 7. to develop/improve their remaining skills”. Only In the perception of CEPAH members:307(i) a few CEPAH members mention the lack of direct applicants and their guardians/representatives interaction, counseling or integrated services, given are only to a small extent involved in CEPAH`s the complex needs of the applicants` families.310 5.3. The results of the disability determination Typically, CEPAHs examine a very large number per county decreased from 2019 to 2020 from over of files over the course of a year. For example, in 6,100 to 4,800 files per year. So, at the national level, 2019, before the pandemic, the maximum number the SECPAH and CEPAH have to analyze and of cases examined by a commission was 12,807,311 to classify in degree and type of disability a large which means an average of 1,067 cases per month, number of files that vary significantly both between while the minimum number was 2,700 cases,312 with counties and over time. a monthly average of 225. During the pandemic, • In 2019 (pre-COVID), 19 counties and 2 districts the number of cases fell drastically. Across the of Bucharest assessed a total of over 116 thousand sample of 23 CEPAHs, the average number of files 305 Quotes from Q3A questionnaires completed by CEPAH presidents. 306 According to UNDP (2017: 1), the grievance redress mechanism is defined as a system of organizational procedures and resources established by national/county/local government agencies to receive and address grievances, complaints, or concerns about the impact of their policies, programs, and operations on external stakeholders. 307 Opinion survey Q3B: Practices and experiences of CEPAH members (N=42), from 24 counties and 2 districts of Bucharest, January- February 2021. 308 In this respect, Section 7.4.4 proves that the lack of the explanatory statement/substantiation for the solution in the disability certificate is one of the two main elements that the courts take into account when they rule in favor of the claimants, persons with disabilities. Moreover, an explanatory statement/substantiation of the solution for classification/non-classification in a degree of disability, accessible to all persons at the end of the assessment process, is not available in all counties. And, an explanatory statement/substantiation containing detailed information to substantiate the classification/non-classification solution and that can be used in court is provided in only 4 counties. 309 By comparison, with regard to the Child Protection Commission (CPC) assessing children with disabilities, the average score is 8.1, on a scale from 1-very negative to 10-very positive. 310 Quotes from Q3B questionnaires completed by CEPAH members. 311 CEPAH Olt. 312 CEPAH from Bucharest, Sector 2, followed by CEPAH Tulcea with 2,846 files. Data reported in Q3A questionnaires. Chapter 5 I 151 files.313 A rough estimate indicates a national 5.3.1. Classification/Non-Classification into number of applicants benefiting from SECPAH/ a Disability Degree and Type CEPAH services of about 250,000 people, in one year. CEPAH’s decision-making process is redundant • Of the total number of cases settled in one year, with SECPAH’s comprehensive assessment around a third (in 2019), and 37 percent (in approach. CEPAH`s solutions are the same as 2020), were new cases, i.e. people on their first SECPAH`s recommendations for over 90 percent of assessment (during lifetime), the rest being re- the cases,315 mainly as a result of the high workload assessments for certificate renewal. 314 and working practices described in the previous sections of this chapter. This situation is not specific According to the regulations in force, the to some counties, but it is widespread. assessment commissions do not only make decisions In Romania, more than 90 percent of the related to the classification/non-classification applicants receive decision of classification/ of the disability degree and type. In addition to maintaining of disability degree. Correspondingly, granting the certificate, CEPAH is obliged to draw the share of files with decision of non-classification up the PIRIS in cooperation with the person with in degree and type of disability is less than 10 disabilities or his/her legal representative, grants percent. At the level of the sample of CEPAHs in the professional orientation certificate (on request), 22 counties and 2 districts in Bucharest, even if the determines the right to a personal assistant for the number of files assessed varies greatly, the share person with severe deficiencies and decides on of certificates with classification/maintaining of the taking of a protective measure (admission in classification in degree of disability is less than 90 residential care centers, referral to day care centers, percent (but more than 85 percent) in only three placement with a personal assistant/professional counties (NT, HD and BC). At the other end, there personal assistant, provision of social services at are counties with shares above 98 percent, namely home). GJ, MH, BT and CJ. 5.4 “I have a 3 hours/day contract, we have a limit of 40 files/day, per month we have 600 files and we have to be very efficient, we meet together. When it`s not possible, everyone analyzes the file, we have members who have specialized and I, as president, have to see them all. We have a very good relationship with SECPAH and we agree before the trial. I do the drafting outside the working hours, I can`t do it in the 3 hours- period specified above.” (Focus group CEPAH 1) 313 The data provided by CEPAH presidents in the Q3A questionnaires, using information from the registers managed by the CEPAH secretariats. The other counties either did not provide this data or provided data discordant with that reported by SECPAH chiefs in the institutional survey Q2A. 314 Estimates based on the data provided by the commissions presidents in 7 counties and one sector in Bucharest, in Q3A questionnaires; other commissions did not provide data. The percentage of the people that are assessed for the first time varies between counties, from a minimum of 27 percent to a maximum of 42 percent, in both 2019 and 2020. 315 Average value estimated by CEPAH presidents. Standard deviation of only 18 percent. Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 18 counties and 1 district of Bucharest, January-February 2021. 152 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 34: Results of the disability determination process in Romania, by county, in 2019 14000 12000 10000 Number of files with 8000 decision of non- classification in a 6000 disability degree 4000 Number of files with 2000 decision of classification/ maintaining of disability 0 degree B_S2 GR B_S5 HR B_S4 DJ NT GJ SJ GL HD AG SM MM BN BC MH SV BT BH BR AR CJ OT Source: Consolidated data from institutional surveys Q3A (CEPAH) and Q3C (CEPAH Secretariat) for 22 counties and 2 districts of Bucharest, for 2019. Although every country is different, and information between them. Instead, at the end of approval rates for disability benefits vary from the whole process, very little monetary benefits country to country, such a high disability degree can be obtained,318 if there is no hope of obtaining classification rate, of over 90 percent of claims, is a the severe degree with the right to a personal cause for concern. assistant, and almost no services. Therefore, the population of potential beneficiaries is • One possible explanation is based on (self) discouraged and reduced to people in truly selection of applicants. People with health desperate, hopeless situations, or braver people problems (which meet the medical-psychosocial willing to face all challenges. Given this (self) criteria) do not apply for a certificate, although selection of applicants before the comprehensive they could. This is because the potential assessment of SECPAH, it is normal that more applicants are not familiar and informed or are than 90 percent of them receive disability degree not able, supported and encouraged to engage classification/maintaining of disability degree. in this process. That is, awareness raising, initial information and communication activities with • Another explanation relates to the way in which the potential applicants are insufficient and/ the disability assessment and determination or deficient.316 Still, the process of preparing are carried out at SECPAH and CEPAH level. and registering the file is difficult, lacking Although the medico-psychosocial criteria in adaptations or too costly for the potential contain some dysfunctional and incomplete beneficiaries to commit themselves in the process. criteria, nevertheless more than 90 percent of For example, municipalities/SPAS refuse to the applicants receive a classification solution. carry out the social inquiry or when registering And this result has to be seen in the light of the the file at DGASPC/SECPAH people are refused fact that exclusion and inclusion errors are rare, (in the absence of a specific procedure) on the according to the specialists involved. However, grounds that the conditions that they suffer from both the comprehensive assessment and the do not fit the criteria, before the comprehensive determination of disability are predominantly assessment takes place.317 The process is not carried out based on the medical model, as simple, but requires substantial capabilities and is clear from the previous sections of this effort from the potential applicants, because it chapter. Consequently, an applicant with an involves many steps with too many institutional impairment/deficiency that fits the criteria may actors with different rules, uncoordinated and obtain the classification even if functioning is not not automatically communicating or transferring significantly impaired, precisely because activity 316 The subject is dealt with in Chapter 2. 317 These issues are discussed in Chapter 3. 318 For example, the adult with a medium deficiency degree benefits only from a complementary personal budget in the amount of 60 lei per month, according to ANDPDCA, the level of social beneficiaries as of January 1, 2021. Chapter 5 I 153 limitations and participation restrictions are still According to the regulations,319 the assessment under-considered in the final SECPAH/CEPAH commissions must ensure that the certificates are solution. The result is a high rate of granting accompanied by a confidential appendix, and within a degree of disability, which is, however, the certificate they must provide an explanatory accompanied by a considerable number of statement/substantiation for the non-classification appeals, so high that it has been necessary solution in a degree of disability. CEPAH presidents to change the institutional arrangement for (in Q3A) and commission secretariats (in Q3C) contesting the certificate, as presented in report data showing that almost all certificates Chapter 7. The two facts seem to be conflicting: issued have the confidential appendix completed. if the applicants are successful (obtaining Instead, the substantiation for non-classification is disability degree classification), why are so a practice carried out only in some counties,320 so many dissatisfied? Because the dissatisfaction that, nationally, about a third of the certificates do is not only about not being classified, but not have this section of the certificate completed. especially about obtaining a degree of disability This is all the more relevant as the commissions perceived as unsatisfactory in relation to the do not draw up a substantiation even outside the needs and limitations of the person. Thus, the certificate, and the absence of such an explanatory disability determination phase, as it is currently statement is one of the two main elements that the conducted in Romania, produces dissatisfaction, courts take into account when ruling in favor of frustration and perceptions of unfairness, even the claimants in the proceedings challenging the though it results in an over 90 percent approval certificate.321 rate for granting disability benefits. Figure 35: Distribution of certificates according to the deficiency degree, by county, in 2019 16000 14000 12000 10000 8000 6000 4000 2000 0 B_S2 GR HR B_S4 TM DJ NT SJ GL HD AG SM BC MH BN SV BT BR AR AB OT Severe deficiency with personal assistant, in 2019 Severe deficiency without personal assistant, in 2019 Marked deficiency, in 2019 Medium deficiency, in 2019 Minor deficiency, in 2019 Source: Institutional study Q3C: The outcome indicators of the disability degree determination process for the CEPAH Secretariat, in 19 counties and 2 districts of Bucharest, January-February 2021. 319 GD no. 430/2008, Annex 1. 320 Namely, 15 counties and 1 district in Bucharest, out of a total of 22 counties and 2 districts included in the research. 321 More details can be found in Section 7.4.4. 154 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM At the aggregate sample level, the degree of monthly attendant`s allowance, and this option is disability granted by CEPAHs follows the existing expressed by written request registered with the national pattern: minor - 1 percent, medium - 11.3 DGASPC. Even so, only the CEPAH secretariats in percent, marked - 51 percent, severe - 36.7 percent, 5 counties and 1 district in Bucharest provided data in 2019.322 The percentage of the certificates for in this regard, because although they collect it, this a severe degree of deficiency with the right to data is not recorded in a database from which it can a personal assistant range from 14 percent to be easily extracted. Although the number of answers 44 percent of all certificates issued by CEPAH is low, they indicate major discrepancies between countywide, in 2019. Only 3 counties (AB, DJ and counties in how they treat access to the personal BT) and one district in Bucharest have percentages assistant service, which is key to independent living of certificates for a severe degree of deficiency with and quality of life for families caring for an adult the right to a personal assistant below 25 percent. At with disabilities.323 Thus, among the 6 DGASPCs, the other end, in 3 other counties (TM, GL and GR), the share of options for monthly allowances ranges those accounted for more than 40 percent of the from 30 percent to over 90 percent of the persons total certificates issued during the year (Figure 35). with a severe deficiency with personal assistant in Out of the certificates for a severe degree of the county. There is no uniform approach at national deficiency issued in 2019: level in this respect either. CEPAH practices for determining the validity • 6.7 percent were certificates for a severe degree period of the disability certificates differ widely, as of deficiency, without personal assistant shown in Figure 36. At the aggregate sample level, • 30 percent were certificates for a severe degree of of the total certificates issued in 2019: deficiency, with personal assistant. • 30 percent were valid for 1 year The adults with a severe deficiency with personal • 36 percent were valid for 2 years assistant may opt for a personal assistant or for a • 34 percent were permanent certificates Figure 36: Distribution of certificates by validity period, by county, in 2019 7000 6000 5000 4000 3000 2000 1000 0 B_S2 GR HR B_S4 DJ NT SJ HD MH AG BT SM BC BN SV BR AR Permanent certificates, in 2019 Certificates valid for 2 years, in 2019 Certificates valid for 1 year, in 2019 Source: Institutional study Q3C: The outcome indicators of the disability degree determination process for the CEPAH Secretariat, in 15 counties and 2 districts of Bucharest, January-February 2021. 322 The data reported by CEPAH secretariats in Q3C questionnaires, for 19 counties and 2 districts of Bucharest, for 2019. For comparison, according to the MMPS Statistical Bulletin, on 31 December 2019, the distribution by degree at national level was as follows: minor - 0.9 percent, medium - 9.1 percent, marked - 51.9 percent, severe - 38.1 percent. 323 In many cases, the local authorities encourage options for monthly allowances because they do not involve employing a personal assistant (usually a family member caring for the person with disabilities). Even if the monthly guardian’s allowance is no less than the personal assistant’s salary, the disadvantage is that the family member caring for the adult with disabilities loses the rights associated with being an employee, such as health insurance, social contributions for pensions, etc. Chapter 5 I 155 However, at county level, there are CEPAHs As far as PIRIS beneficiaries are concerned, in 17 that grant certificates with a 1-year validity to counties (out of 40), all applicants receive a PIRIS most applicants, such as those in BT or SV, while attached to the disability certificate, regardless of other commissions grant them only in isolated the decision to classify or not to classify them in a cases (GR).324 At the same time, there are counties particular disability degree. In the other counties where commissions have a preference for 2-year (23), only the beneficiaries of a disability certificate certificates (NT, BR or SM), just as there are also receive PIRIS as an annex. CEPAHs that do not issue 2-year certificates (BT).325 • Given the above mentioned practice and the fact Finally, permanent validity certificates no longer that the rate of the solutions for non-classification vary extremely between counties, but still vary in a disability degree is less than 10 percent, at significantly between 16 percent (in BT or NT) and national level, the share of the files with PIRIS 55 percent (in AG or MH) of total certificates in 2019. amounts to more than 95 percent of the total files This pattern of extreme inter-county disparities is assessed in one year. also verified in the data for 2020, which indicates stability over time. • However, for people with a permanent disability certificate (who no longer present themselves • As only 7 out of 22 CEPAHs326 have a specific for assessment), CEPAH members confirm that approved procedure (paragraph in the general over 80 percent of them have a PIRIS that has not procedure) on how to classify in a degree of been reviewed for more than 3 years.328 disability, the basis and the algorithm according to which the assessment commissions determine However, 42 percent of CEPAH329 members the validity period of the certificate are neither believe that the current standardized format of transparent nor explained to the beneficiaries of PIRIS330 should be revised. More importantly, the certificate. however, 75 percent of the commission members indicate that PIRIS can only become a truly useful 5.3.2. Individual Social Rehabilitation and tool if it is linked also to other benefits or services Integration Program (PIRIS) than those currently in place, in order to respond to the real needs identified in the comprehensive PIRIS is discussed at length in subchapter 6.2 of assessment.331 There is a need to “include recovery this volume. Here, it is relevant to mention that, in actions that could be monitored and depending practice, CEPAH is involved in the elaboration of on which the person could be assessed when they PIRIS, alone or in collaboration with SECPAH, in return for certificate renewal”.332 It should also only 12 of the 36 counties and 4 districts of Bucharest “contain, where appropriate, recommendations that participated in the study. Most often, SECPAH for social integration, professional or educational prepares the first draft of the PIRIS, which is usually orientation and psychological support.” At the approved by CEPAH without changes.327 In only 10 same time, however, all these services must counties the PIRIS is usually prepared by CEPAH be made accessible, because otherwise simply and its secretariat. recommending non-existent or inaccessible services • The redundancy between CEPAH and SECPAH in PIRIS cannot add value. Only around a third of is not limited to the degree and type of disability, the CEPAH members consider that the revised form but also relates to PIRIS. of PIRIS should reflect the voice of the person being assessed. 324 The percentage of the certificates with a validity period of 1 year varies between 1.6 percent and 83.9 percent of the total certificates in 2019. 325 The share of the certificates with a validity period of 2 years takes values between 0 percent and 71.7 percent of the total certificates in 2019. 326 According to the data reported by CEPAH presidents in the Q3A questionnaire. 327 This is the situation in 30 of the 40 SECPAH/CEPAHs studied. In the opinion survey Q3B, 82 percent of CEPAH members (with valid answers) reported that the SECPAH projects of PIRIS were accepted in their original form. In the other cases, the main reason for modifying the SECPAH`s drafts of PIRIS relates to incomplete plans and/or plans that do not reflect the applicant’s situation. 328 A share of 87 percent of the respondents confirmed this statement. Opinion survey Q3B: Practices and experiences of CEPAH members (N=45), from 15 counties and 1 district of Bucharest, January-February 2021. 329 Opinion survey Q3B: Practices and experiences of CEPAH members (N=43), from 24 counties and 2 districts of Bucharest, January- February 2021. 330 GD no. 430/2008, Annex 2. 331 For example, the wheelchair for which the person has to make a new application and a new file to be submitted to CNAS. Or the national health programs. 332 The quotes in this paragraph come from the Q3B questionnaires. 156 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 5.3.3. Professional Orientation Certificate from the mentioned rights. The number of these certificates is increasing and the CEPAHs granting The total number of the professional orientation them mention difficulties in issuing them,335 mainly certificates issued in 2019 and 2020 reported by related to the lack of documents proving the date of CEPAH presidents in the institutional survey the onset of the disease. However, only 3 CEPAHs Q3A, was particularly low. Out of 24 commissions have developed a specific procedure for issuing participating in the survey, only the CEPAHs in two these certificates. counties (SB and BR) and one sector in Bucharest (sector 5) reported numbers less than 5 certificates 5.3.4. Granting Protective Measures issued per year, while commissions in 16 counties reported that they did not issue professional Most counties report low numbers of cases, less orientation certificates, and 5 CEPAHs did not than 1 percent of total cases assessed per year, in respond.333 Thus, an extremely small number of which CEPAH provides protective measures, such people with disabilities have benefited in recent as admission to residential care centers, referral years from vocational assessment leading to a to public/private day care centers, placement professional orientation certificate. with a professional personal assistant or home On the one hand, this is the result of the care services. Recommendations for the necessary regulation according to which CEPAH issues a protective measures for the person are made by professional orientation certificate only at the SECPAH/CEPAH within PIRIS. However, in order request of the person with disabilities, based on to be admitted to a public residential or day care an application which he/she submits to the town center, the person with disabilities or his/her legal hall of the domicile/residence locality or to the representative must submit an application to this DGASPC registry office.334 On the other hand, effect, to the town hall where he/she is domiciled CEPAHs presidents state that the number of or resides.336 professional orientation certificates is so low either As a rule, social assistance in residential care because SECPAHs do not carry out the vocational centers is decided by the assessment commissions assessment, or because the person`s interest in in the case of persons with disabilities who cannot vocational guidance (or other labor market services) be provided with adequate care at home, either is not a subject of systematic analysis for specialists for social reasons such as homelessness, lack of (but is considered proven only by an express request family, poor financial situation, or because they submitted to the town hall). need specialized services that are not available in The low participation of people with disabilities the community. Most of the CEPAHs presidents in the labor market is also reflected in a low number consider that the documents available on file allow of certificates issued for the application of the a solid argument that treatment and the socio- provisions of Art. 58 or 59 of Law no. 263/2010 on the medical care can be carried out at the person`s home public pension system. People with disabilities who or admission in a residential center is necessary.337 have contributed to a pension throughout their lives In addition, most commissions (16 out of 21) ask are entitled to a reduction in the standard retirement for a report/certificate/proving document from the age and full contribution periods. In 2019 and 2020, municipality showing the service situation at local about half of the sample (of 24) CEPAHs issued level and the steps taken to keep the person in the disability certificates allowing applicants to benefit family/community.338 333 In the case of one county (SJ), CEPAH did not respond, but SECPAH reported professional orientation certificates for about 15 percent of total files in both 2019 and 2020. 334 Only one county (BC) stated that they issue the professional orientation certificate also without an express request made by the person concerned, based on the vocational and occupational skills assessment carried out by SECPAH (as part of the comprehensive assessment) and the interest expressed by the person concerned during the interview/interaction with SECPAH. 335 In 2019, 12 CEPAHs reported that they issued such certificates, between 1 and 30 per county/per year. In 2020, 15 counties provided data, reporting between 5 and 63 certificates per county/per year. The other CEPAHs studied either did not issue such certificates or do not have data on their number. Institutional study Q3A: Factual data and indicators on the activity of the Commission for Assessing Adults with Disabilities (CEPAH) in 22 counties and 2 districts of Bucharest, January-February 2021. 336 GD no. 430/2008, Art. 17, para. (1) However, in most counties (13 out of 19 that answered the question) it is possible for a person coming for assessment for a new certificate to apply for admission to public residential or day care centers at the same time. 337 In the institutional survey Q3A, 18 of the 23 CEPAH presidents who responded to the question expressed this opinion. 338 In the institutional survey Q3A, 21 CEPAH presidents answered the question, 16 of whom stated that they require concrete evidence that there have been attempts to keep the person in the family/community that have failed and admission in a residential center is the last solution proposed. Chapter 5 I 157 Social assistance in day care centers is aimed at Half of the counties surveyed report that there providing direct recovery, socialization or various is a waiting list of those who have submitted an therapies. Most of the time, SECPAH/CEPAH only application/file for admission to public residential makes a recommendation for day care centers and or day care centers. As of December 31, 2020, there not an actual referral to such services. However, were between 3 and 141 people on the waiting because these services are insufficient, and the lists. A third of CEPAH presidents say that there existing ones are overcrowded, the number of are cases where the applications for admission recommendations to day care centers is very low in to public residential or day care centers have not relation to the needs of the people with disabilities, been approved due to a lack of available places at less than 50 per year in most counties. county level. The number of applications rejected due to lack of places ranged from 5 to 113 per • With regard to the admission of persons with county in 2020 (with no increase in the context of certificates valid for 1-2 years, only 6 commissions the COVID-19 pandemic). have developed a specific procedure. Therefore, the decision on this matter is usually taken “on a case-by-case basis”, “where appropriate”, “depending on the needs”.339 5.4. The need for reform of the disability assessment and determination system in Romania In conclusion, a real paradigm shift in disability take into account the current state of affairs and, assessment is needed. In the opinion of CEPAH on the other hand, incorporate the views of all members (in Q3B), the need for reform is at a level of stakeholders and not only those of specialists 7.4, on a scale of 1-none to 10-total.340 The objective of (patients` associations, associations of people the reform should be a scientifically robust disability with disabilities, service providers, etc.); assessment that, at the same time, accurately 3. Ensuring sufficient staff members who, however, identifies the needs of people with disabilities. One to be selected based on clear and transparent possible solution would be to introduce ICF-based conditions, both at the level of the assessment criteria for adults with disabilities in Romania, services and the commissions; not just for children and young people. This is the 4. Staff training in ICF, but taking into account view shared by almost 75 percent of the members the belief shared by many specialists that only of the assessment commissions, as expressed in the medical criteria can be measured rigorously; opinion survey Q3B. The other 25 percent either say they don`t know what ICF is, 341 or explain that 5. Increasing benefits and developing services any reform is almost impossible under the current for people with disabilities, so that it becomes conditions - high caseloads and insufficient staff at possible to develop individual intervention both SECPAH and CEPAH. plans in line with people`s needs. These plans should, however, include actions on recovery The main changes needed, mentioned more that can be monitored and depending on which frequently, include: the person is assessed when they return for 1. Adoption of new criteria for disability degree certificate renewal; classification, allowing a holistic approach to 6. Information, education, communication the individual, based on an integrated model activities for the general population and the that also takes into account the consequences of decision-makers to change the widespread impairments in terms of functionality, activity belief that illness is handicap/deficiency, that limitations and participation restrictions; handicap/deficiency is disability and that the 2. Development of procedures, tools and disability certificate is a compensation for certain methodologies to ensure a uniform approach at medical conditions. national level. But they should, on the one hand, 339 Quotes from Q3A questionnaires completed by CEPAH presidents. 340 In the opinion survey Q3B, 80 percent of CEPAH members answered this question. Standard deviation of 2.1. 341 Section 9.3.2. shows that training on ICF is extremely limited at all levels, SPAS, SECPAH and CEPAH. Among the members of the commissions, out of 120 members, only 8 (out of 8 counties) have ever participated in ICF training. 158 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Conclusions of Chapter 5 Unlike most countries, Romania has separate processes for assessing disability and determining disability. The assessment is carried out by SECPAH, while the final decision on the classification (determination) of the disability degree is made by CEPAH. Romania implements a multidisciplinary procedure for disability classification. At the legislative level, the classification procedure (determination of disability) was developed on the premise that disability is a multidimensional phenomenon and a result of both social and medical factors. However, in practice, the classification of degree and type of disability is predominantly based on the medical model. Psychosocial criteria are taken into greater account in granting entitlement to services (vocational orientation, personal assistant, protective measures), but not in 1 determining the degree and type of disability. Most specialists in the assessment commissions believe it is necessary to reform the disability assessment system in Romania; a viable solution would include the adoption of new criteria that allow for a holistic approach that is based on an integrated model that also takes into account the consequences that impairments generate in terms of functionality, activity limitations, and participation restrictions; i.e., on the ICF model. But in order to implement such a reform, members of the assessment commissions stress that sufficient staff must be ensured and selected based on clear and transparent conditions and trained in the use of the ICF, both at SECPAH and CEPAH level. Typically, the assessment commissions review a significant number of files that vary considerably from county to county and year to year.342 Given the large volume of files, the decision on classification by degree and type of disability is taken too 2 quickly to be thorough. The classification is based on document analysis, and CEPAH members rarely see applicants. The average length of the commissions’ decision- making process for each case is so short—about 5 minutes—that it precludes proper deliberation and evidence-based decision-making. Consequently, the CEPAH decision is essentially the same as the SECPAH recommendations based on the comprehensive assessment. Redundancy refers not only to the classification/non-classification of disability degree, but also to the PIRIS, which recommends the activities and services that the adult with disabilities needs in the social integration process. The role and responsibilities of CEPAH in relation to SECPAH regarding the disability classification process should be clarified 3 and standardized at county level. A general review of the role and responsibilities of CEPAH and SECPAH is needed, taking into account the need for assessment and classification to be carried out by a single institutional structure and, as far as possible, using standardized tools and procedures, at the level of all Romanian counties. The review should aim to add value to CEPAH and avoid overlap or redundancy with SECPAH. Improving working procedures and tools will enhance the performance of the system. 342 For example, in 2019, before the pandemic, the maximum number of cases examined by a commission was 12,807, which means an average of 1,067 cases per month, while the minimum number was 2,700 cases, with a monthly average of 225 cases. During the pandemic, the number of cases fell drastically. Across the sample of 23 CEPAHs, the average number of files per county decreased from 2019 to 2020 from over 6,100 to 4,800 files per year. Chapter 5 I 159 In Romania, unlike other countries, the degree of disability is obtained by over 90 percent of applicants. In other words, in general, to obtain the certificate, it is enough to have a relevant medical condition (which is included in the medico-psychosocial criteria) and to submit an application. However, the high rate of disability degree granting is accompanied by a considerable number of appeals, so many that it has been necessary to change the institutional arrangement for appealing the certificate.343 The two facts seem to be conflicting: if the applicants are successful 4 (obtaining disability degree classification), why are so many dissatisfied? Because dissatisfaction does not only refer to obtaining non-classification, but especially to obtaining a degree of disability perceived as unsatisfactory in relation to the person’s needs and limitations. Therefore, the process of determining disability, as currently carried out in Romania (mainly based on the medical model), produces dissatisfaction, frustration, and perceptions of inequity, although it results in a more than 90 percent approval rate of granting disability benefits. In accordance with the regulations in force, the assessment commissions, in addition to granting the certificate, have the obligation to develop PIRIS in collaboration with the person with disabilities or his/her legal representative, to grant the Professional Orientation Certificate (upon request), to establish granting the right to a personal assistant to the persons with a severe deficiency and deciding on whether to take a protective measure (including admission in a residential or day care center). In this regard, CEPAH members point out that PIRIS should be reviewed and linked to 5 other benefits or services than those currently in place, in order to meet the actual needs identified in the comprehensive assessment. Half of the counties surveyed report that there is a waiting list of those who have submitted an application/file for admission to public residential or day care centers. Also, a third of CEPAH presidents say that there are cases where applications for admission to public residential or day care centers have not been approved due to a lack of available places at county level. Therefore, developing services for people with disabilities and increasing access to existing services is a priority. In practice, CEPAH’s decision-making process is not participatory; interaction with the applicants is very limited or nonexistent, and does not incorporate a feedback mechanism, which violates the principle “nothing for us, without us.” More 6 generally, in Romania, the whole disability assessment system lacks a grievance redress mechanism that complements (but does not replace) the formal legal channels for handling grievances, such as the judicial system or the organizational audit mechanism.344 The decision-making process within CEPAH is not transparent. The absence of guidance procedures or rules is accompanied by a lack of substantiation of the decisions regarding classification/non-classification or degree of disability. The inclusion of a legal adviser in the membership of the SECPAH/CEPAH could 7 bring value in the transparency of the decision-making process for disability degree classification. However, the presence of a legal adviser within SECPAH/ CEPAH would only partially resolve the transparency of the decision-making process. To minimize the interference (political or otherwise) in the assessment and decision-making process, the scientific and professional autonomy of the structures responsible for assessment should be ensured. One model that could be considered 343 This topic is covered in detail in Chapter 7. 344 Also see Chapter 7. 160 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM is that of the invalidity system. And, ideally, a single system could be created based on the invalidity model, covering both invalidity and disability. Doing so could help reduce the system’s significant fragmentation. Despite all the pressure of overwork, under the assumed responsibility of making decisions that affect the lives of people with disabilities, in the perception of commission members, the decision-making process is smooth and efficient, situations of disagreement between commission members are reportedly rare, and errors of exclusion or inclusion are reported to represent only isolated cases. The working practices of the assessment commissions differ considerably between counties in all steps of the process, from the working meetings, to who determines which files enter a meeting (and how), to the management of and access to the files 8 during the process, to the determination of the certificate’s validity period. What all the county commissions have in common is that the procedure for classifying a person in a disability degree and type does not benefit from any adaptations for vulnerable groups. A new working procedure for CEPAH and SECPAH based on the ICF principles is urgently needed. Rethinking and implementing such a procedure will provide an opportunity to introduce a more relevant, scientifically robust working tool and a new approach to the disability determination process. The new procedure should be developed via coordination between specialists, social workers, international ICF experts, policy makers, and disability activists. Doing so will provide a unique opportunity to redesign and introduce a modern functional approach to effective disability determination. Chapter 5 I 161 162 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 6. Identifying the need for services345 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE This chapter focuses on how disability assessment is used for this aim. The following sections examine linked to the social protection system for people with how the individualized plans are filled in, and disabilities. Identifying persons with disabilities’ how the proposed measures are implemented and needs for services is core phase 5 within the delivery monitored. From a person-centered approach, the chain. In Romania, the Individual Rehabilitation analysis combines institutional data with persons and Social Integration Program (PIRIS) and the with disabilities’ feedback and their experiences in Individual Service Plan (PIS) are the instruments accessing social benefits and social services. 345 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. Chapter 6 I 163 6.1. Identifying the need for services: An overview After finalizing the disability assessment based degree of disability; (ii) vocational orientation on the medico-psychosocial criteria,346 SECPAH certificate, on request; and (iii) services/actions drafts the comprehensive assessment report, which recommended in PIRIS, including protection includes results and recommendations of the main measures such as granting a personal assistant or assessment in three areas: classification or non- admission into an institution or day care center.347 classification into a degree of disability, vocational The CEPAH secretariat notifies the person of the orientation, and protection measures (see Flowchart results and mails the approved documents. In the 5). The PIRIS includes the services/actions that next step, a case manager elaborates the PIS, based SECPAH recommends for the applicant. Afterward, on PIRIS. Subsequently, SECPAH endorses PIS,348 the applicant’s file, along with the comprehensive and the case manager coordinates and monitors the assessment report and PIRIS, is transmitted to the implementation of PIS and reviews the beneficiary’s CEPAH secretariat. CEPAH takes the final decision progress.349 on (i) classification or non-classification into a Flowchart 5: Identifying the persons with disabilities’ needs for services and links with the other core phases: An overview PIRIS PIS Individual Rehabilitation Comprehensive Individual and Social Integration Assessment Report Service Plan DGASPC Program No CONCLUSIONS RECOMMENDATIONS standard RECOMMENDATIONS 1. Medical Actions form Case manager RESULTS OF THE ASSESSMENT ... appointment 1. Social 2. Educational and Professional Activities SECPAH 2. Medical ... Comprehensive 3. Psychological 3. Protection Measures disability 4. Vocational ... CEPAH 5. Level of education Revision date decision assessment SPAS 6. Skills and level of social integration (level of dependency) CONCLUSIONS Recommendation for classification or non- classification in degree of disability Recommendation for vocational guidance Recommendation for protection measure Source: GD 430/2008, Annex 7 Source: GD 430/2008, Annex 2 Application for Actual provision of benefits and services reassessment PIS implementation, case management Figure 37 shows how the number of persons decreases to 4,392 beneficiaries of a disability evolves across the delivery chain, from disability certificate decided by CEPAH, to less than 3,600 assessment to identifying needs for services, in 10 beneficiaries of PIRIS,350 1,200 beneficiaries of PIS, selected counties in November 2020. Thus, from and only a few beneficiaries of vocational orientation almost 4,500 applicants for whom SECPAH writes certificates or protection measures (according to a comprehensive assessment report, the number regulations, those are released only upon request). 346 See more details in Chapter 4. GD no. 268/2007, Art. 48. 347 GD no. 430/2008, Art. 2. 348 Order no. 2298/2012, Art. 5(d). 349 Law no. 448/2006, Art. 5(23). 350 According to the legislation, PIRIS is issued together with the certificate. However, there are situations in which the PIRIS can be revised without the issuance of a new certificate, as well as situations in which a new certificate can be issued without the PIRIS (in cases where issuance of the certificate is required for the application of Art. 58 or 59 of Law no. 263/2010 when the person, who already has a permanent certificate, no longer goes through the comprehensive assessment stages). 164 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 37: Statistics from core phase 3, disability assessment, to core phase 5, identifying the needs for services, November 2020 (number of applicants/beneficiaries) 4497 4392 358 1183 44 33 Comprehensive Disability PIRIS PIS Vocational Protection assessment reports certificates* orientation measures certificates SECPAH CEPAH Source: Data for November 2020 regarding 10 counties that reported the necessary data in (i) Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH); and (ii) Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH Secretariat, January-February 2021. Note: *Disability certificates are issued both in cases of classification and non-classification into a degree of disability. For non-classification, the certificate should list the reasons. In Romania, the needs assessment is performed conclusions on needs for services are the PIRIS and by SECPAH, according to Art. 23 of GD the PIS. The following sections detail the levels and no. 268/2007, but it is not done with adequate aspects of implementation and present the various evaluation tools or according to a specific operating models developed at the county level for methodology.351 The only instruments that include identifying needs for services. 6.2. The Individual Rehabilitation and Social Integration Program (PIRIS) The PIRIS is the “document developed by the one single SECPAH specialist, to whom the file has CEPAH, which specifies the activities and services been assigned, fills in all chapters (in 3 counties), that the adult with disabilities needs in the while in others, CEPAH or its secretariat drafts process of social integration.”352 Under the current the PIRIS, and the SECPAH is not involved (5 regulations, SECPAH makes the recommendations counties). Finally, there are also seven counties in included in PIRIS, based on the conclusions and which the PIRIS is done by SECPAH or CEPAH, recommendations of the comprehensive assessment with no specific pattern. However, according to report,353 while CEPAH should draw up PIRIS in the SECPAH chiefs and CEPAH presidents, in 30 collaboration with the person with disabilities or of the 40 studied counties, SECPAH prepares the their legal representative.354 first draft of PIRIS, which is usually approved by The dominant practice is that the SECPAH CEPAH with no changes.355 In the other 10 counties, team drafts the PIRIS, with specialists filling in the PIRIS is most often prepared by CEPAH and its chapter related to their respective specialization (in secretariat. 25 out of 40 studied counties). In other counties, 351 Art. 23 of GD no. 268/2007: „The individual needs of the person with disabilities shall be assessed within the complex assessment service of the general directorates of social assistance and child protection of the counties and local districts of Bucharest, respectively, and shall be specified in the individual service plan”. 352 Law no. 448/2006, Art. 5(25). 353 GD no. 268/2007, Art. 50(c). 354 Law no. 448/2006, Art. 89(1)(2). 355 In the opinion survey Q3B, 82 percent of CEPAH members (with valid responses) reported that the SECPAH drafts of PIRIS had been accepted in their initial form. In the other cases, the main reason to change the SECPAH drafts of PIRIS involved incomplete plans that do not reflect the applicant’s situation. Chapter 6 I 165 Figure 38: Link between PIRIS and the comprehensive assessment report: Factual data (number) 16 17 17 13 14 11 9 8 6 6 5 2 2 2 3 2 2 3 1 1 1 1 1 1 Non-response Never Only in a few cases Sometime In most of the cases Always MEDICAL ACTIONS form PIRIS are base on... Medical assessment MEDICAL ACTIONS form PIRIS are base on... Psychological assessment PROFESSIONAL ACTIVITIES form PIRIS are base on... Vocational assessment PROTECTION MEASURES form PIRIS are base on... Skills and level of social integration Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. Note: Sum of bars per category is 36. In elaborating and deciding on PIRIS, neither and consider the correlation between PIRIS and the SECPAH nor CEPAH have a team member (with a needs expressed by applicants to mark only a 6, on certain specialization) who contributes more than average, on a scale of 1 to 10. Nonetheless, in the the others. Also, there is neither an assessment SECPAH practitioners’ perception, the services and area nor a category of criteria that weighs more activities recommended in PIRIS satisfactorily meet than the others.356 GD no. 430/2008 regulates the the needs both identified by the assessment and comprehensive assessment report and PIRIS, expressed by the applicant.358 and provides standardized templates of these Regarding PIRIS beneficiaries, the counties split instruments (see Flowchart 5). By design, they are into two groups. In 17 (of 40) counties, all applicants correlated, SECPAH’s comprehensive assessment receive PIRIS annexed to the disability certificate at report representing input for PIRIS. Regardless of the end of the process, irrespective of the decision the author (SECPAH or CEPAH), PIRIS is based to classify/not classify into a degree of disability. on the national standardized template in nearly all In the other (23) counties, only the beneficiaries counties.357 of a certificate with classification into a degree of However, Figure 38 shows that the link between disability receive as annex the PIRIS (those not the conclusions of the comprehensive assessment classified into a degree of disability receive the report and the recommendations included in PIRIS certificate but not the PIRIS). However, the PIRIS is weaker than the legal provisions designed for. is revised once the certificate is reassessed. Once a Because SECPAH does not provide a full-fledged person obtains a permanent certificate, the PIRIS assessment, the services and actions included in is no longer updated. Therefore, for a considerable PIRIS adequately reflect the results of the medical number of persons with disabilities, PIRIS is largely and psychological assessments and less often the irrelevant. In the opinion survey, CEPAH members vocational, educational, and skills/social integration confirm that over 80 percent of the individuals with assessment. In the opinion survey Q3B, CEPAH a permanent disability certificate have a PIRIS that members provide similar information, as shown in has not been reviewed in over three years.359 Figure 39. Thus, CEPAH members are rather critical 356 Consolidated data from the institutional surveys Q2A and Q3A for 35 counties and 5 districts of Bucharest. 357 GD no. 430/2008, Annex 2. Five counties did not answer. 358 In the opinion survey, they assessed both aspects with average scores of 7–8 (Figure 39), on a scale of 1 to 10, and standard deviation values less than 2. Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=181), January-February 2021. 359 Eighty-seven percent of respondents confirmed this statement. Opinion survey Q3B: Practices and experiences of the CEPAH members (N=45), from 15 counties and 1 district of Bucharest, January–February 2021. 166 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 39: Link between PIRIS and the comprehensive assessment report: Opinions (average values on a scale of 1–10) 10 PIRIS reflects the results of the... 9 8 7.80 7.93 7 6.57 7.04 6.59 7.00 6 6.02 6.39 6.03 5 5.00 4 3 2 1 Vocational Educational level Social Skills and level of Psychological Medical PIRIS responds PIRIS responds assessment assessment assessment social integration assessment assessment to the needs to the needs assessment identified expressed by through applicant assessment CEPAH SECPAH Sources: (i) Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=181), from 36 counties and 4 districts of Bucharest, January-February 2021; (ii) Opinion survey Q3B: Practices and experiences of the members of evaluation commissions for the classification in degree and type of disability for adult persons (CEPAH, N=46), from 24 counties and 2 districts of Bucharest, January-February 2021. The total number of PIRIS follows the same provided all data, the aggregated gap between the trend as the number of application files assessed two sets of data is approximately 1,000 PIRIS per by SECPAH.360 Both have considerably decreased month. The gap reaches over 8,000 PIRIS at the year during the COVID-19 pandemic, with significant level (2020).363 The main cause of this inconsistency variation across counties.361 Overall, in the pre- is the existence of parallel databases/records that COVID period (2019), at the national level, are not cross-checked by SECPAH and CEPAH.364 SECPAH/CEPAH used to prepare about 550 PIRIS Other causes involve limited computations allowed per month, on average. The minimum number of by the existing software applications, and the mostly PIRIS prepared in a county (in GR) was more than manual data management. As stated in a Q2A six times lower than the maximum number (in questionnaire: “Whereas many of the data could not OT); from about 150 to over 970. Due to measures be obtained based on the D-SMART software, being related to the COVID-19 pandemic,362 the average processed manually, based on other indicators at number of PIRIS per county dropped to 415 (or SECPAH level, there may be small errors in the by 24 percent) in November 2020. The decline was data.” After the research team double-checked recorded in all counties but the reduction varied with the SECPAH chiefs and CEPAH presidents widely—in some counties it almost halved, while and corrected and validated the data with them, in other counties it declined by only 7 percent. At there were still 13 counties (out of 15 counties the same time, discrepancies between counties have with completed Q2A and Q3A questionnaires) that persisted. recorded discrepancies. Notably, there are differences between data Drawing up the PIRIS is not a participatory on PIRIS reported by SECPAH and CEPAH. A process, as foreseen in the legislation.365 Most of the comparative analysis shows that differences in data surveyed counties report that SECPAH collects a do not follow a certain pattern. For 15 counties that person’s opinion (feedback) about the services and 360 See also Chapter 4 and Section 9.2.1. 361 The estimates included in this paragraph are based on the data from 15 counties that reported the necessary data in (i) Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH); and (ii) Institutional survey Q3A: Facts and indicators regarding the activity of evaluation commissions for the classification in degree and type of disability for adult persons (CEPAH), January–February 2021. 362 Law no. 55/2020, Art. 4(5). 363 A small part of this difference comes from the fact that CEPAH (unlike SECPAH) issues PIRIS on request. However, such situations were reported (in the Q3A survey) only in three counties and only for 2020. 364 See also Sections 9.2.4 and 9.3.5 on data management and information system. 365 Law no. 448/2006, Art. 89(1)(2). Chapter 6 I 167 actions contained in the PIRIS, and CEPAH (and its (SECPAH or CEPAH) elaborate a single draft of secretariat) adjusts the PIRIS accordingly. However, PIRIS, and the persons’ involvement is limited to no studied county has developed a work procedure being informed thereof and receiving it with the regarding PIRIS or, for example, for situations in disability certificate. Furthermore, there are also which an applicant does not agree with his/her three counties in which the applicants’ feedback is representative regarding a specific service or action neither collected nor incorporated into PIRIS. The included in PIRIS. In only 8 (out of 40) counties, interviewed persons with disabilities told the same SECPAH and CEPAH report that they first draft a story; most did not even know what PIRIS is. They version of PIRIS, which is then discussed with the identified it only after the researcher informed them. applicants and their representatives, amended, and Nobody has ever asked their opinion or explained adapted to the specific needs of the person. The to them why it is useful. general practice (in 29 counties) is that specialists 6.1 “I wanted to restore the degree to make an application and to re-analyze Alexandra’s certificate from the perspective of the degree and from the perspective of the recovery program. That must exist there, even if it is a paper without any meaning. I wanted to do this … When the social worker came I insisted on writing her need for occupational therapy. They seem to be told not to write. Eventually, when I went a second time, I saw that the exact things I had asked her to write for the evaluation were missing. I told her, madam, my daughter needs occupational therapy. She told me that they don’t have occupational therapy … But when you do an assessment and ask me my needs, please write there that she needs occupational therapy. You can’t write me that we don’t have it, but I don’t care that you don’t have it, you don’t have it, that’s your story. My story is to make a correct recording and for this reason, I wanted to redo so that in the certificate in the personalized intervention plan or as it is also called … there is introduced the need of my child for occupational therapy.” (Interview with NGO representative, Bucharest) “In the rehabilitation plans, I was only told to avoid conflict situations, I was not recommended to certain resorts. I would have liked that. What happens? Other psychiatrists tell me that my mental illness does not recommend going to the 6.2 mountains—the alpine area, but pre-alpine area - up to 600-700 meters altitude. Here in PIRIS he doesn’t write something like that and he should have written it. He should also have written which resorts are indicated for mental illness: resorts and treatment. … PIS and PIRIS are stapled to the certificate. On one of them it says just that: to avoid conflict situations, I am recommended psychotherapy sessions. I do not agree with them. only if the psychologist is very good and only if the sessions seem intelligent to me. I don’t know how to say and it is also recommended to follow the drug treatment. And that’s what I do anyway. That’s all he tells me.” (Interview with person with disabilities, woman) “- When you received the certificate of disability, it had other documents attached. Somehow PIRIS? Maybe PIS? - I can’t tell you. Wait a minute to see what I received in the mail. I’ll tell you right away. 6.3 So, by mail I received an address informing me that I have been evaluated and that I can go. what is the program with the public and that the monetary rights are carried out ex officio, according to the degree in which I was classified. Followed by the certificate itself, followed by the appendix to the certificate of classification. which are three lines and appendix two to the certificate of classification. Ah, that’s it, I found it. There is also the Rehabilitation and Social Integration Program. a paper in which he writes: drug treatment, professional educational activities and social services activities. This is all.” (Interview with person with disabilities, men, 45 years old) 168 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The current PIRIS template focuses solely on include mainly general recommendations such as needs and does not mention the person’s resources, specialized medical treatment or medication “as the way he/she wants to live, or plans for the future. prescribed by the doctor,” family support, or work Therefore, PIRIS, as they are now, are weakly linked “according to the health condition,” while the to the assessment conclusions and do not represent sections on education and professional activities are anything in terms of an intervention plan. As part most often empty. of the institutional survey Q3A, CEPAH from eight Therefore, about a third of the SECPAH and counties sent the package of documents approved CEPAH specialists who participated in the opinion for the last three individuals assessed in the most surveys think that “developing PIRIS, which is now recent CEPAH meeting. The analysis of this sample a purposeless piece of paper, is a must.”366 However, shows that they are barely filled in. Two examples of changing the template would not make PIRIS more more complete PIRIS are found in Figure 40. Others effective so long as the service package connected are empty and do not even mention the revision to disability assessment is not extended, services date, or have a single word, such as “oncology.” are not more readily available (especially in rural The interviewed persons with disabilities provided areas), and a mechanism to monitor PIRIS/PIS some additional PIRIS specimens that are like implementation is not put in place. those included in the sample. The completed ones Figure 40: Two examples of PIRIS Source: Models extracted from the sample of PIRIS attached to Q3A questionnaires. 366 Focus group SECPAH 3; about 30 percent did not answer the question and 37 percent believe that PIRIS should not be changed. Chapter 6 I 169 6.4 “We consider these PIRIS to be bureaucratic work, in addition. The indications in the plan are observed only in 1 percent of cases. In small and common towns, they have [services] nowhere to go. However, they [the applicants] are only interested in the monetary value.” (Focus group CEPAH) The existing PIRIS are of poor quality and their private day care or residential centers, a cognitive content is not entered into the SECPAH/CEPAH stimulation program, psychotherapy, or any type database(s). Among the 25 counties that extracted of education program (formal and nonformal) to information from their databases, in connection complete education for persons who dropped out of with PIRIS, only 3 CEPAH were able to provide school or left early.368 Consequently, data from PIRIS data about persons recommended for home care are not recorded or analyzed to identify the needs and only 7 counties about services for independent for social services at the county level. Therefore, living.367  Also, from the SECPAH reports, only at present, PIRIS does not represent an effective between 4 and 11 counties (out of 36) could provide instrument either at the individual or public policy data (for 2019–20) regarding the number of PIRIS levels. that included personal assistant services, public/ “- PIRIS is next to the disability certificate that is proposed by SECPAH. It’s just an 6.5 administrative act, just a paper. SECPAH to make recommendations because they know people with disabilities. It would be necessary for the evaluation for the driving license. then we record what results from the medical documents. But they only remain on paper, no one monitors them. If we have recommended something, for example, recovery. the man does not come for certain reasons, because it costs him, the distance is very long, he does not settle, or the personal assistant has a job and does not have time. On the reintegration side, it is not up to the commission, NGOs need to develop certain services. They don’t even have case managers for adults. - We have a recovery center, but those who get the degree do not come. Those up to the age of 45 want to work. The people have PIRIS and we the members of the commission sign this document, but it is up to the person whether he makes a recovery or not. There are not enough recovery centers in the county.  - It’s the same in other counties, we issue another document, without any purpose, we put some more toner.” (Focus group CEPAH) 367 Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH Secretariat (N=25), from 23 counties and 2 districts of Bucharest, January–February 2021. 368 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January–February 2021. 170 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 6.3. Individual Service Plan (PIS) The PIS is “the document setting short, medium proposed measures/actions are implemented and and long-term objectives, specifying ways for monitored. intervention and support for adults with disabilities, Across the country, there are three practices through which the activities and services specified for drawing up a PIS for adults with disabilities. in the PIRIS are carried out.”369 Under current Among the 40 studied counties,373 21 SECPAH do regulations, for adults with disabilities, a case not use PIS; 13 SECPAH draw up PIS at least for manager370 draws up a PIS at-need and submits it some categories of persons with disabilities; and 6 to SECPAH for clearance, to the public service of SECPAH only approve the PIS drawn up by case social assistance of residence for implementation, managers for beneficiaries of social services (public and then to the applicant.371 The beneficiaries of or private). The practice of not using PIS does not the case management method are adults with depend on the size of the population of persons disabilities who live in the residential system and with disabilities registered within the county.374 In those who live with family and have an individual counties with such large populations (over 20,000 plan of service and other protection measures under persons), the common SECPAH practice is to limit implementation.372 Thus, a case manager should to officially clearance the PIS submitted by case be appointed to those who have a PIS. However, managers, usually only for people who live in a case manager is appointed only for adults with residential centers. In counties with fewer persons disabilities who live with family and already have with disabilities, more often SECPAH draws up a PIS under implementation. This lack of clarity in the PIS either for all beneficiaries of a certificate with current legal framework leaves room for different classification into a degree of disability or for broad interpretations and implementation practices categories such as people with a marked or severe regarding both PIS and case management. This deficiencies or people with severe deficiencies and section focuses on how PIS is filled in and how the a personal assistant. Figure 41: Total number of PIS for selected counties, by the SECPAH strategy regarding drafting PIS 55 680 54 924 41 605 40 866 51 227 37 525 Comprehensive PIRIS PIS Comprehensive PIRIS PIS assessment reports assessment reports 2019 2020 Counties that do not use PIS Counties in which case managers draft PIS and SECPAH clear Counties where SECPAH drafts PIS Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 26 counties and 3 districts of Bucharest that reported the necessary data, January-February 2021. 369 Law no. 448/2006, Art. 5(24). 370 A case manager is “the member of the multidisciplinary team that coordinates, monitors and evaluates the fulfillment of the PIS, as well as the measures taken in connection with the adult with disabilities,” according to Law no. 448/2006, Art. 5(23) on the protection and promotion of the rights of persons with disabilities. 371 GD no. 268/2007, Art. 50(d); Order no. 2298/2012, Art. 5(e). 372 The appointment of a case manager is the responsibility of the public/private social service provider. Order no. 1218/2019 for the approval of the specific mandatory minimum quality standards regarding the application of the case management method in the protection of adults with disabilities, Standard 1, Minimal requirement 3. 373 Consolidated data from the institutional surveys Q2A and Q3A for 35 counties and 5 districts of Bucharest. 374 See Section 1.3. Chapter 6 I 171 PIS are not equitably used across the country. disabilities. At the aggregated level, about a third of As discussed, in more than half of the country, all assessed files have a corresponding PIS, for both no persons with disabilities benefit from a PIS. 2019 and 2020. Yet around 95 percent of all PIS come In contrast, in 13 counties nearly all persons with from the counties where SECPAH draws up PIS, disabilities have a PIS, whereas in 6 counties only while the other 5 percent represent PIS drafted by people living in institutions do. Furthermore, the case managers that SECPAH cleared. On average, revision of PIS is not regulated. According to the in a county in which SECPAH draws up PIS, the mandatory minimum quality standards, the case average number of PIS per month decreased from manager draws up the PIS at-need and also revises 500, in November 2019, to 300, in November 2020. it at-need.375 Usually, the PIS is revised once with the By contrast, in counties where case managers draft reassessment of the certificate and renewal of PIRIS. the PIS (usually for institutionalized persons with Once a person obtains a permanent certificate or is disabilities), the average number of PIS per month classified with the minor disability degree, the PIS stayed flat, at around 50. The same is true in counties is no longer updated. Therefore, for a considerable where SECPAH has not used PIS. proportion of this population, the PIS is either By design, the PIS is the instrument through missing or is obsolete. which the activities and services specified in PIRIS The total number of PIS followed the same are carried out. SECPAH practitioners think that trend as the number of assessed application files both the links between PIS and PIRIS and between by SECPAH or PIRIS (see Figure 41).376 It has PIS and the comprehensive assessment report are considerably decreased during the COVID-19 satisfactory. Rather adequate, as well, is the link pandemic, with significant variation across counties. between PIS and the needs expressed by individuals Figure 41 shows how the aggregated number of (young or not). The SPAS representatives are more PIS evolved during 2019–20 for 26 counties and 3 critical and think that PIS could be improved to districts of Bucharest, of which 14 do not use PIS, 4 respond more adequately to the needs identified have only PIS done by case managers, and 11 where through the mandatory social inquiry, especially for SECPAH drafts PIS for the majority of people with the adults with disabilities living in urban areas. Figure 42: On a scale of 1 (not at all) to 10 (completely), to what extent do the services and activities included in PIS satisfy … (average scores) The services and activities of PIS satisfy ... ...the need identifies upon SECPAH assessment 8.6 ...the recommendations laid down in PIRIS 8.2 SECPAH ...the needs expressed by the individual in question 7.6 ...the needs of young persons aged 18-26 7.6 ...the needs identified in the mandatory social inquiry - RURAL 7.2 SPAS ...the needs identified in the mandatory social inquiry - URBAN 6.5 Sources: (i) Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=139), January-February 2021; and (ii) SPAS survey with responses provided only by social workers who have ever seen a PIS/PIRIS from 33 localities (N=20 rural and 13 urban) situated in 18 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January-February 2021. 375 The case manager must periodically reevaluate the Action Plan and, depending on the beneficiary’s needs, decide to revise the PIS or other documents and make concrete proposals for completion/modification. Order no. 1218/2019, Standard 3, Minimal requirement 9. 376 See also Chapter 4 and Section 9.2.1. 172 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM In 32 counties and 4 districts of Bucharest that factors. At the same time, a few interviewed people participated in the institutional survey Q2A, only 5 with disabilities who received PIS mentioned that SECPAH developed an approved specific working nobody explained its meaning or use. procedure for drawing up PIS. Only one SECPAH provided its specific working procedure on PIS to the research team. That refers only to the relationship between PIS and PIRIS. Specifically, in this county, 6.6 the PIS approval triggers the need to draft a new PIRIS aligned with PIS. The involvement of the applicant is not mentioned.377 The existing PIS are just lists of general recommendations that do not even comply with the basic standards of proper information, let alone “Yes, in that paper he recommends going to orientation or referrals to necessary services. There recovery. But I didn’t receive a sheet with for is no national standardized format for PIS. Only example let me know there is that service where 6 SECPAH (out of the surveyed 36) developed a you can call so you can get help at home or I don’t specific template for PIS. As part of the institutional know about. I didn’t receive that, and I think it would survey Q3A, CEPAH from eight counties sent the catch me good to know exactly who offers services package of documents approved for the last three and where and how. Or what else I would like to individuals assessed in the most recent CEPAH have. I know that after I graduated, I thought maybe meeting. The analysis of this sample shows that they to know what organizations are involved or how are filled in randomly, with no specific elements we are Something to Say, we are an Association for young people or the elderly, or any vulnerable of self-representatives. I would have liked to know groups. With or without a specific template, most that there are some kind of support groups or some often, the PIS is a table that replicates the structure kind of groups where you can go to do different of PIRIS. An example is provided in Annex 6. activities, guidelines like this.” (Interview with person Most often, within the existing PIS, the “short, with disabilities, woman, 33 years old) medium and long-term objectives” imposed in legislation378 are activities or services such as “specialized permanent care and supervision” There is no monitoring and evaluation (M&E) or “socialization and free occupational therapy mechanism connected with PIS and PIRIS. In activities.” The activities are organized in chapters, line with the legal framework, case managers are usually medical, psychological, vocational, and expected to coordinate, monitor, and evaluate PIS social services (assistance or protection), while implementation for persons with disabilities. Case services/activities are presented in checklists. managers should also review the beneficiary’s The template specifies the period for delivering progress. Yet in 24 of the studied 36 counties, there all services/activities per chapter, with answer is no case manager for adults with disabilities. categories such as 6 months, 12 months, or Available data necessary for M&E are also very permanent. Responsible persons/institutions limited. As in the case of PIRIS, PIS is seen rather are not assigned for each service/activity but on as a formality and, consequently, its content is not chapters of activities, and range from family to recorded or entered into the SECPAH/CEPAH specialist doctors, psychologists, councilors, and database/software application. Out of 27 counties, employers. only 3 could provide selected information about The legislation contains no express requirement the services and activities included in PIS and on drawing up PIS based on interaction with the their beneficiaries.379 Moreover, only 4 (out of applicant. Like PIRIS, PIS focuses solely on needs 36) surveyed SECPAH report systematically and does not mention the person’s resources, monitoring/measuring progress on implementing the way he/she wants to live, or environmental the services and activities recommended in PIS, 377 SECPAH general procedure, Section 7.3.2.2 on particularities of the disability assessment based on the medico-psychosocial criteria, county IS. 378 Law no. 448/2006, Art. 5(24). 379 Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH secretariat (N=27), from 25 counties and 2 districts of Bucharest, January–February 2021. Chapter 6 I 173 but only 2 have a specific methodology to support reassessment process. For applicants who do this aim.380 At the community level,381 half of the not bring hard evidence (documents) that show surveyed SPAS report that they have ever seen they followed the PIS/PIRIS recommendations a PIS/PIRIS, without difference between rural (especially rehabilitation), some commissions and urban SPAS. Out of these, a quarter claim to indeed tend to decide shorter validity periods systematically monitor the implementation of for the certificate or a milder degree of disability. services and activities in PIS/PIRIS by adults with CEPAH members think that such decisions have disabilities and their caretakers. Furthermore, only mainly an educational role, as “it is a way of pushing three SPAS use a specific methodology for this people to do what is best for them.”385 There is purpose. widespread belief among the SECPAH and CEPAH The legal provisions stipulate that persons with practitioners that many persons with disabilities do disabilities and their caretakers are obligated to fully not rehabilitate precisely because they do not want carry out the services and activities included in PIS, to lose their disability benefits. but there are no consequences for failing to do so.382 By contrast, the NGOs and persons with Only 2 SECPAH (out of 36) and 3 CEPAH (out of 24) disabilities emphasized in interviews that PIS/ declare that they have a procedure in the event that PIRIS are neither specific nor related to their needs, persons with disabilities and their caretakers fail possibilities, and preferences, and they do not benefit to execute the PIS.383 Besides, both the interviewed from proper information, orientation, referrals, SECPAH chiefs and CEPAH presidents report that or support adequate to their financial or time during the 2018–20 period, no case managers or resources. Many explained that services are either SECPAH specialists were penalized for drawing up not available, too far away, or are too expensive an unworkable PIS, and no persons lost their degree to afford. Actually, the SECPAH chiefs provided classification due to a failure to perform the PIS. similar information. They reported in institutional Even in the absence of a monitoring system or survey Q2A that out of almost 40,000 PIS in 2020, clear procedures, the interviewed NGOs and persons there were only 37 with clearly specified services, with disabilities provided anecdotal evidence including information about location, contact, types that, at least in some counties, there were people of provided services for persons with disabilities, who lost their classification or received a milder appointment, and other concrete information.386 disability degree due to failure to implement (some Therefore, there is a weak correlation of the or all) activities from PIS. The CEPAH members recommendations from PIS (and PIRIS) both with a offered additional evidence in this sense.384 In the person’s specific needs and with the map of existing opinion survey they explained that, although there services in the county (which, at least theoretically, is no monitoring system, they quickly check how should be available and constantly updated). PIS has been implemented during the certificate 380 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January–February 2021. 381 SPAS survey with responses from 71 localities (N=43 rural and 28 urban) situated in 26 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS, January–February 2021. 382 According to Law no. 448/2006, the person with disabilities is required to follow the activities and services provided in PIS (Art. 59[1][e]); the person who cares for, provides supervision to, and has as dependent an adult with a disability is required to observe and/or follow the activities and services provided in PIS (Art. 60); the personal assistant, and the professional personal assistant, respectively, must perform all activities and services in PIS (Art. 38b,c and Art. 49b,c). Moreover, the personal assistance of the adult with severe disabilities must sign a commitment, as an addendum to the Individual Labor Contract, undertaking liability to implement PIS fully (Art. 38a). Similarly, for the Professional Personal Assistant (Art. 49). 383 Institutional surveys Q2A_SECPAH and Q3A_CEPAH, January–February 2021. 384 About half of the CEPAH members from counties that use PIS provided the type of response mentioned in the text. Opinion survey Q3B: Practices and experiences of the CEPAH members (N=40), from 16 counties and 1 district of Bucharest that use PIS, January– February 2021. 385 Quote from the comments provided by a doctor, CEPAH member, in a Q3B questionnaire. 386 Aggregated data for 32 counties and 4 districts of Bucharest that participated in the institutional survey Q2A. 174 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 6.7 6.8 “The comprehensive assessment for the classification in degree and “PIRIS, we [CEPAH] are just signing type of disability must be central in the SECPAH activity, to offer it! We compensate the impotence quality instead of quantity, to make the person come out more of the society to offer services by encouraged than entering us. But if PIRIS, PIS, professional personal giving them money! And people assistant (APP) also fall into our tasks, this will remain a desideratum. with disabilities are interested in […] PIRIS and PIS or APP accreditation can be tasks distributed to the money, not recovery. As long as the services that manage the social services and know them, monitor society has got rid of responsibilities, them, develop these services. SECPAH focuses on criteria, ICF, respectively the development of document interpretation, programming, evaluation at headquarters services, and only provides money, or at home, HUMAN relationship with the adult with disabilities, then this is the situation! Abroad, ensuring a professional level of evaluation. If the SECPAH task remains, people are provided services, not we propose that at the re-evaluation, it should matter whether or not money! And since some of the money the person complied with the PIRIS recommendations; that’s why the goes on alcohol, then the caretakers person doesn’t do motor recovery, he doesn’t do prosthesis because are happy! Just a formality, these he knows that if he recovers from the body’s functionality, he loses are PIRIS and PIS, do not help at all.” the degree of disability! What could be sadder? We want him to regain (Focus group CEPAH) his autonomy, which means he will receive less money.” (Quote from observations provided by a SECPAH chief in a Q2A questionnaire) 6.9 6.10 “I know they’re written down there, yes. it’s a recovery plan. But “- Regarding the Individual Service Plan, can I didn’t benefit from it. I didn’t go to take advantage of them. you use something from it, is it useful to you? Because I should go find out more, I know, but I didn’t go. - They didn’t mention anything to me and The fact that I have to go, to ask, I have to take someone with even at one point I was thinking if there are me all the time. made me give up. I wish there was a person. recovery centers. neuro. well. physiotherapy whether it’s a psychologist. a person who can give you more recovery centers, neuro-locomotor recovery complex information and not have to run from side to side. but centers for adults. I mean, they didn’t even say what documents you need, what it entails, what benefits recommend me if there was anything like you have afterward. It was quite difficult for me to accept that. I guess there are private ones, but I this [disability]. so it would have been okay for me to have a was thinking to the state ones which I can psychologist. I think that. there is a person who can tell you afford. That plan is just a piece of paper with certain things in more detail, so you don’t have to ask left and no useful information in it.” (Interview with right so that you can find out information about this whole person with disabilities, woman, 24 years old) process.” (Interview with person with disabilities, woman, 33 years old) Chapter 6 I 175 The general degree of implementation by with disabilities in urban areas compared to those in the person with disabilities of the services and rural communities. Adult persons with disabilities activities recommended in PIS/PIRIS is rather who live with family in a city appear to be the most low, as estimated by representatives of the key vulnerable. Therefore, PIS and PIRIS do not live institutions involved in the disability assessment up to their aims of improving the lives of people system (see Figure 43). It is lower for adult person with disabilities by providing easier access to the with disabilities who live with family compared support they need. to those in institutions. It is also lower for persons Figure 43: Key institutional actors’ opinions regarding degree of accomplishment of services and activities in PIS/ PIRIS (average values) On a scale from 1 - not at all to 10 - completely, which is... 7.9 6.7 6.5 5.9 6.6 6.4 7.0 5.7 5.9 6.3 5.2 3.6 The degree of ...people with ...people with ...people with disabilities ...people with accomplishment of the disabilities living disabilities living in urban areas disabilities in services and activities of PIS/ in the family in social institutions rural areas PIRIS - Total and for... for adults SECPAH CEPAH Rural SPAS Urban SPAS Sources: (i) Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=130), January-February 2021; (ii) Opinion survey Q3B: Practices and experiences of the CEPAH members (N=31), from 16 counties and one district of Bucharest that uses PIS, January-February 2021; (iii) SPAS survey with responses provided only by social workers who have ever seen a PIS/PIRIS from 33 localities (N=20 rural and 13 urban) situated in 18 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS, January-February 2021. Changing PIS and PIRIS, as well as improving However, SECPAH and CEPAH members case management for adults with disabilities, is emphasize that merely drawing up PIS for all considered necessary to reform the disability system. persons with disabilities would not make PIS (or That said, how specifically to change it remains PIRIS) more effective. The individualized plans of a topic of debate. The opinion survey Q3B polled intervention are not effective because there is a lack CEPAH members on four options for changing PIS, of case management for adults with disabilities. The but none were considered in the same time a good PIS and PIRIS are not effective because they are not idea and realistic—CEPAH members gave all four monitored and evaluated and because beneficiaries’ options average scores of lower than 8 (on a scale progress is not linked to the disability reassessment. of 1 to 10). In their view, the best option would be First and foremost, the individualized intervention to require, at the national level, SECPAH to draw plans are not properly drawn up by specialists up PIS and PIRIS for all individuals classified into or adequately implemented by beneficiaries a degree of disability, based on a standardized PIS because services for persons with disabilities are template and a revised PIRIS format. The other massively underdeveloped, which poses a major options—expanding the case managers network structural issue. For this reason, the SECPAH and or developing an M&E system linked to specific CEPAH specialists perceive PIS and PIRIS as an responsibilities both for persons with disabilities administrative burden with no real impact on the and case managers or SECPAH specialists that lives of people with disabilities. write up PIS—are perceived as being unrealistic and even impossible to implement under current circumstances.387 387 Opinion survey Q3B: Practices and experiences of the CEPAH members (N=41), from 18 counties and 1 district of Bucharest, January–February 2021. 176 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The development of ICF-based rehabilitation rehabilitation is a process that enables persons services represents a top priority for reforming with disabilities (with functional, psychological, the disability system and making effective developmental, cognitive, and emotional disabilities, individualized plans (PIS, PIRIS). Figure 44 shows impairments, or health disabilities) to overcome the availability of physical and rehabilitation barriers to accessing, maintaining, or returning medicine (PRM) physicians by county. The 1,417 to employment or another useful occupation. PRM physicians account for 2 percent of all doctors Historically, like most of the developing countries, in Romania, and are very unevenly distributed Romania has been more focused on combatting throughout the territory.388 More generally, diseases, as compared with the developed countries medical rehabilitation services are insufficient and such as the U.S., the U.K., and Australia, which unequally developed. In relation to the ICF, the have had rehabilitation services systems in place for medical rehabilitation services stabilize, improve, many years. Accordingly, vocational rehabilitation or restore impaired body functions and structures, services are even less developed than medical ones. compensate for the absence or loss of body functions The SECPAH specialists confirmed in the opinion and structures, improve activities and participation, survey that in their counties/Bucharest districts, and prevent impairments, medical complications, support services for persons with disabilities and risks.389 who wish to work in a protected environment or Besides medical rehabilitation, vocational on the free labor market are missing or seriously rehabilitation is equally important.390 The UNCRPD underdeveloped.391 is clear on the importance of services, as vocational “- PIRIS and PIS are formal, I cannot force the person to bring me proof of recovery. There is 6.11 no collaboration between recovery doctors and specialist doctors. This is the problem! The mayor should also get involved here, there should be mobile teams rather than paying so many personal assistants. Community services are completely lacking. SECPAH makes PIRIS/PIS, CEPAH signs it, but it is null! - In our county, there is a recovery clinic, but it is private and has a waiting list of one year. However, on the recovery side, an important role is also played by the social worker from the mayor’s office and the family. In vain the person stays in the center for 18 days for recovery but after that… what happens?” (Focus group CEPAH) 388 At the national level, there are only 13 PRM physicians for children, but within the residency training curriculum, every resident in PRM must complete a six-month internship in pediatrician rehabilitation. In addition, there are 368 PRM resident doctors, most of them grouped in university centers (National Institute of Statistic, 2020). 389 Rehabilitation services are based (where possible) on a functional assessment and diagnosis to determine the goals and plan for rehabilitation. These are followed by agreed upon interventions (including biomedical and technological approaches, as well as peer support) to optimize a person’s capacity. Rehabilitation plans are monitored and adapted in accordance with an individual’s needs and resources. The careful monitoring of outcomes related to specific interventions may help determine improvements to the intervention so as to optimize functioning and minimize disability (OECD, Eurostat, and WHO 2017: 87). 390 The ICF-based conceptual model of rehabilitation is a strategy that integrates approaches (i) to assess functioning in light of health conditions; (ii) to optimize a person’s capacity, to build on and strengthen the resources of the person; (iii) to provide a facilitating environment; (iv) to develop a person’s performance, and (v) to enhance a person’s health-related quality of life, in partnership between person and provider and in appreciation of the person’s perception of his or her position in life, over the course of a health condition and in all age groups and across sectors, including health, education, labor and social affairs, with the goal to enable persons with health conditions experiencing or likely to experience disability to achieve and maintain optimal functioning (Meyer et al. 2011, 768, Table II). 391 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=139), January–February 2021. Chapter 6 I 177 Figure 44: Ratio between adults with disabilities and PRM physicians, by county 6 732 4 935 2 588 173 549 CT DJ B IF BH TM CV IS CJ HD SB VL AR BT CS GJ GL BC AG MS BV IL MM TR NT PH SV AB BZ SJ TL HR BR DB BN MH SM OT VS VN GR CL Romania Adult persons with disabilities per Physical and Rehabilitation Medicine physician National average Sources: National Institute of Statistics (2020, Table 13); MMPS/ANDPDCA, Statistical Bulletin for December 31, 2019. Improving persons with disabilities’ access to agreements between DGASPC/SECPAH and other existing services is as important as developing new service providers that could provide services to rehabilitation services. If PIRIS can be limited to persons with disabilities. Yet in only 11 counties (out recommending the type of services and activities of 15), information on the type and availability of more appropriate to the needs identified through these services are updated in real-time, while only the disability assessment, PIS should contain 5 DGASPC have a person designated to liaise with specific information about the available services other service providers in the field of disability. (name, address, contact, available places, etc.). Furthermore, within the focus groups, SECPAH As PIS is given to the person, it also represents a practitioners showed that data about the available means of information and could help to identify services are either part of the tacit knowledge (rather the best available service. To this end, the SECPAH than institutional memory)—“We know most of specialists and the case managers who draft PIS them [services], we have them in our head;”—or are should have access to updated information on the limited to residential services—“We have a list of available services. In this sense, less than half of services where they can be institutionalized and we the surveyed SECPAH (15 out of 36) report that offer them a list where they can call.”393 Therefore, DGASPC has a list, database, or map with the more efforts should be made at the county level public and private institutions/organizations that to develop partnerships, communication, and provide social services for persons with disabilities, collaboration between DGASPC/SECPAH and to ensure that the services and activities included the other service providers (public and private) to in PIS are effectively accessible to that person.392 create a functional network rather than existing The same counties benefit from collaboration clusters of isolated services. 392 All data in this paragraph come from the institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January–February 2021. 393 Quotes from Focus group SECPAH 4. 178 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Conclusions of Chapter 6 Identifying the service needs for people with disabilities is the core phase 5 within the delivery chain. The PIRIS and PIS are the instruments used for this aim in Romania. The PIRIS specifies the activities and services the adult with disabilities needs for social integration. Practices for filling in PIRIS vary by county. The total number of PIRIS followed the same trend as the number of assessed application files by 1 SECPAH, considerably decreasing during the COVID-19 pandemic, with significant variation across counties. However, PIRIS is only relevant for a small part of the population of persons with disabilities. Over 80 percent of individuals with a permanent disability certificate have a PIRIS that has not been reviewed in over three years. Because a significant part of SECPAH does not provide a full-fledged disability assessment, the services and actions included in PIRIS adequately reflect the results of the medical and psychological assessments, but less often the results of the 2 vocational, educational, and assessment of skills or level of social integration. The existing PIRIS are of poor quality, and their content is not entered into the SECPAH/ CEPAH database(s). Consequently, data from PIRIS are not recorded or analyzed to identify the social services needs of persons with disabilities at the county level. Therefore, at present, PIRIS does not represent an effective instrument either at individual or public policy levels. The PIS specifies interventions and supports for adults with disabilities, through which the activities and services recommended in PIRIS are carried out. The current regulations need to be revised to clarify who is responsible for drawing up a PIS, and when, as well as clarifying the relationship between PIS and case management. 3 The use of PIS is not equitably distributed across the country. About half the counties do not use PIS, while about 95 percent of all PIS that exist in the country are provided by only 13 counties. Therefore, for a considerable proportion of persons with disabilities, PIS is either missing or obsolete. The total number of PIS followed the same trend as the number of assessed application files by SECPAH or PIRIS, considerably decreasing during the COVID-19 pandemic, with significant variation across counties. Only 5 SECPAH (out of the surveyed 36) developed an approved specific working procedure for drawing up PIS, and only 6 SECPAH have a specific template for PIS. Consequently, the existing PIS are just lists of general recommendations that do not 4 comply even with the basic standards of proper information, let alone orienting or referring persons with disabilities to the necessary services. The correlation of the recommendations from PIS and PIRIS both with the specific needs of the person and with the map of the existing services in the county is still deficient. Chapter 6 I 179 Key elements of the ICF-based conceptual model include a partnership between person and provider to appreciate the person’s perception of his or her position in life, across all health conditions, age groups, and sectors (health, education, labor, and social affairs). Thus, from the ICF perspective, both types of individualized 5 plans used in Romania (PIRIS and PIS) are still overly focused on medical needs, insufficiently participatory, and based on templates that need to be revisited to include the person’s resources, the way he/she wants to live, and environmental factors, in addition to the needs identified through assessment. There is no M&E mechanism connected to PIS and PIRIS. The careful monitoring of outcomes related to specific interventions is also missing. A person with disabilities’ general degree of implementation of the services and activities recommended in the PIS/PIRIS is rather low, as estimated by consensus by key institutional 6 representatives involved in the disability assessment system. Even in the absence of a monitoring system or clear procedures, the interviewed NGOs and persons with disabilities provided anecdotal evidence that at least in some counties, there are people who lost their classification or received a milder degree due to failure to implement (some or all) activities from PIS. The widespread belief among SECPAH and CEPAH practitioners that many persons with disabilities do not rehabilitate precisely because they do not want to lose their disability benefits supports such an approach. Changing PIS and PIRIS, as well as improving case management for adults with disabilities, is considered necessary to reform the disability system. In CEPAH 7 members’ view, the best option would be to require, at the national level, SECPAH to draw up PIS and PIRIS for all individuals classified into a degree of disability, based on a standardized PIS template and a revised PIRIS format. However, merely drawing up PIS for all persons with disabilities would not make PIS (and PIRIS) more effective. In any country, the relevant authority can accompany the disability assessment with a needs assessment, including recommended services/benefits. Yet the disability assessment authority can only recommend the necessary services/benefits; it cannot ensure access. Ideally, assessed needs would be paired with recommendations and electronically shared with relevant benefits/service providers, as an input into the eligibility testing process to increase access for persons with disabilities. The legal framework in Romania is designed precisely with this in mind. However, in practice, both PIRIS and PIS seem to be based more on what exists than on what is required. PIRIS/PIS seem more like instruments limited to identifying the available services (unevenly in the territories), but the identification and management of the unavailable supply of services are not envisaged at the local level. This management task is not established or carried out, which limits the ability of the PIRIS/PIS to support the needs, development, and effective integration of people with disabilities. Therefore, PIRIS/PIS will remain of little use until the available menu of benefits and services covering the variety of needs related to person with disabilities is extended and diversified, services become available (especially in rural areas), and a monitoring mechanism for implementation is put in place. The service package connected to disability assessment can be extended by developing the referral system, especially for the relevant national programs implemented by the Ministry of Health. ANDPDCA should also explore the possibility of introducing new support measures, such as grant programs to adapt houses or cars to meet a specific person’s’ needs.394 394 Grigoraș et al. (coord.), World Bank (2020: 122-23). 180 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The development of ICF-based rehabilitation services, both medical and vocational, represents a top priority for reforming the disability system and making effective individualized plans. Improving the access of persons with disabilities to existing services is equally important. More efforts should be made at the county level to develop partnerships, communication, and collaboration between DGASPC/ 8 SECPAH and the other service providers (public and private) to create a functional network, rather than the existing clusters of isolated services. The development of an integrative platform with information about lifelong benefits and services available to persons with disabilities, coordinated by the ANDPDCA, could add considerable value in this respect. Chapter 6 I 181 182 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7. Appeals against disability certificates395 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE This chapter reviews the process for appealing on approving the organization and operation disability degree certificates and explores the regulations for the Higher Commission has not process’s main characteristics, strengths, and been revised, as of 2017, the provisions concerning weaknesses. The analysis is based on factual data appeals against disability degree certificates were reported by the CEPAH secretariat in 24 counties and modified by EGO no. 51/2017, providing that the 2 Bucharest districts, and on the opinions expressed certificates issued by the evaluation commissions in interviews with judges, lawyers, NGOs, and “can be appealed by their holders within 30 calendar persons holding a disability certificate.396 days from communication, at the administrative According to the initial form of Law no. litigation court sections that have jurisdiction on 448/2006, people with disabilities who were not the matter, according to Law no. 554/2004 on satisfied with the classification/non-classification administrative litigation, as subsequently amended into a deficiency degree, could use an appeal and supplemented; the requests filed with these mechanism managed by the Higher Commission administrative litigation sections are exempt from for Assessment of Adults with Disabilities, part of the filing fee.” the former ANPD.397 Although Order no. 1261/2016 395 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 396 See Data and Method section for more information. 397 Law no. 448/2006, Art. 90. Chapter 7 I 183 This legislative change came about because disability degree assigned to them to file directly of the difficulties generated by the fact that the with the administrative litigation sections.”399 Higher Commission had too few members to The following sections look at whether, in what cover the large number of appeals. As a result, way, and to what extent the appeal process was the appeal against the disability certificate was facilitated. Romania currently has no complaint “merely an intermediary action which, according redress mechanism400 in the disability assessment to the procedure, extended over a period of 60 system that supplements (not replaces) the legal, days, after which most of the disabled people turn formal complaint management channels, such to the courts.”398 Therefore, the declared purpose as the judicial system or the organizational audit of introducing the new regulation was to simplify mechanism. the appeal procedure “by facilitating the right of the disabled people who are unhappy with the Figure 45: Distribution of appeals on the disability certificates per counties, November 2019 and November 2020 (number of appeals/month) 187 129 105 71 72 68 53 29 11 27 20 17 10 12 10 10 11 10 10 6 4 8 8 8 86 6 3 3 4 2 2 3 2 1 1 2 0 0 0 SV DB AR GJ AB NT TM HD VS BR BN DJ SM GR SB SJ HR CJ OT MH November 2019 November 2020 Source: Institutional survey Q3D: Appeals on the disability degree and disability type certificates (CEPAH Secretariat) in 20 counties, January-February 2021. The remaining 4 counties and two districts of Bucharest that participated in the survey did not answer these questions. A consequence of this change to the law is that the size and with the membership specified by the number of appeals has dropped significantly at law. Therefore, the need to have a different appeal national level. Before EGO no. 51/2017 was passed redress mechanism had become urgent in 2017. on June 30, 2017,401 500 appeals were registered The solution was EGO no. 51/2017, by which this weekly with the Higher Commission for Assessment task of the Higher Commission was removed, and of Adults with Disabilities against the decisions appeals started to be referred to the administrative of CEPAH. Meanwhile, the Litigation, Human litigation sections of the courts. Resources Service of ANPD had more than 700 Compared to the state of things up to 2017, the appeals against the decisions issued by the Higher data reported based on the documents available at Commission on the dockets of the courts. Therefore, the CEPAH secretariats in 20 counties only count about 26,000 appeals were registered every year approximately 400 appeals in November 2019, and at national level, which means a workload too 550 appeals in November 2020. A gross estimation high for the Higher Commission, at least one of shows that, at a national level, the number of 398 Substantiation note for EGO no. 51 of 30 June 2017, published on https://www.gov.ro/ro/guvernul/procesul-legislativ/note-de- fundamentare/nota-de-fundamentare-oug-nr-51-30-06-2017&page=7 399 Substantiation note for EGO no. 51 of 30 June 2017. 400 In line with UNDP (2017: 1), the complaint redress mechanism is defined as a system of organizational procedures and resources established by national/county/local government agencies to receive and manage dissatisfaction, complaints or concerns related to the impact of their policies, programs and operations on external stakeholders. 401 Substantiation note of EGO no. 51 of 30 June 2017, published on https://www.gov.ro/ro/guvernul/procesul-legislativ/note-de- fundamentare/nota-de-fundamentare-oug-nr-51-30-06-2017&page=7 184 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM appeals that the DGASPCs are aware of in a month as it is possible that the number of appeals at is currently smaller than the number of appeals national level decreased, while in some counties that would be filed with the Higher Commission it increased. Thus, the validity and completeness in about two weeks in 2016–17. By contrast, some of the data regarding appeals provided by some CEPAH presidents and members stated in the focus counties cannot be verified, especially given that groups that the number of appeals in their counties the current legislation no longer requires appeals is currently higher than in 2017, as shown by the to be registered or monitored at county or national quotes 7.1 and 7.2 provided below. The two types level (see Section 7.3). of information are not necessarily in contradiction, 7.1 7.2 “For instance, we have about 50 “About appeals, there is a problem, because the courts show empathy cases per month in the courts; much for the disabled person. This is about the credibility of the service more than before, when the Higher (SECPAH), about how the assessment is conducted within the Commission was in place.” (Focus service, including if a Higher Commission or some other institution group CEPAH 1) was in place, so that you can refer them towards them in case of discrepancies, before getting to court ... There were a lot fewer appeals when the Higher Commission was in place.” (Focus group CEPAH 3) Figure 45 shows there are substantial One key requirement for all people with discrepancies between counties. Moreover, in disabilities to access judicial and/or administrative 2020, it seems that some counties had significant procedures—in this case, the procedure of increases in the number of appeals, while in others, appealing disability certificate—is the existence of the number remained the same or decreased. The efficient, accessible complaint mechanisms that are number of appeals reported by four counties— provided in a timely manner. Actual accessibility Suceava, Dâmbovița, Arad, and Gorj—makes for entails the participation of persons at all stages of about 75 percent of the total appeals. There is no the procedure, and includes providing information research or data to show whether these four counties in an intelligible, accessible manner; recognizing actually have much higher rates of appeal compared and adapting various forms of communication; to other counties, or if they are just more active in physical accessibility at all stages of the process; registering appeals and are, in reality, typical at and financial support in the case of legal assistance. national level. Therefore, the statistics presented in In addition, to ensure transparency, the state must this chapter must be taken with caution; however, make sure that all relevant information is accessible they provide the only data-driven snapshot of the and available, and that all relevant requests, cases, reality in the territory. and court rulings are registered and reported properly.402 All these aspects are reviewed in the following sections. 402 Point 51, 52 letter a, b, c, d, point 54 & 73, letter h) , page 12-13, General Comment no. 6 – Article 5 Equality and Non-discrimination, 2018, UNCRPD/C/GC/6. Chapter 7 I 185 7.1. Information regarding appeals The first requirement to enable easy access to the DGASPC/CEPAH secretariats have a specific, appeal process is that people with disabilities must approved procedure (or sections/chapters of the receive information on time and in an appropriate general procedure). Out of these six counties, only language. Such information should be provided three provided the information to the research ex officio, not upon request, because the interested team. Review of the three procedures reveals persons may be afraid to request such information or major discrepancies between the counties. One of seek to avoid creating a “conflict” with institutional the procedures is very general; it quotes the text representatives (DGASPC, SECPAH, CEPAH). Or, of the law and mentions that petitioners should they may not have the capacity to formulate their be referred to the competent authorities, with request, especially those persons with impaired no other details. A second procedure includes understanding or poor education, those who grew two measures, depending on the result of the up in an institutional environment, or those who assessment for assignment of a disability degree, are isolated. According to current regulations,403 without any specific information about how the information regarding the manner in which a dissatisfied applicant is assisted in filing an appeal. disability degree is assigned can be obtained from The procedure, however, specified additional the CEPAH secretariat by any interested natural instructions, meaning that there is a collaboration person or legal entity. There is, however, no explicit with the Legal Service to prepare the “medical- provision regarding information about appeals. psychological-social substantiation of the disability The explicit information that “this certificate can be degree assigned for those appeals that are filed appealed within 30 days from communication” is with courts.”406 The third procedure comes from part of the standard form of the disability degree CEPAH Sălaj and can be seen as good practice. The certificate, according to Government Decision no. Sălaj operational procedure includes information 430/2008, Annex 1. about:407 Detailed information about how to appeal the • informing the person about how the disability certificate is not publicly available in all counties. degree were decided; In the sample of 24 counties and 2 Bucharest • explaining the substantiation that accompanies districts,404 6 CEPAH secretariats reported that the certificate for assigning/not assigning a such information is not available. However, for disability degree; the majority of the counties/districts surveyed (20 out of 26), the CEPAH secretariat reports • advising the person(s) about steps to follow for that such detailed information was provided to the appeal; everyone interested.405 In most cases (18 out of 20), • offering support with a petition (standard form) information is available in simplified language. and, if needed, assistance in filling it in; the However, there are only two counties where the petition can be filed with the register desk of the information is provided by people who have been Sălaj Court for the appeal to be registered; trained specifically on appeal procedures. In other • help with copying all the documents on which words, article 9 of the UNCRPD is not implemented the solution was based; for instance, the medical equally in the country. file; The predictability of the appeal procedure is • use of adequate language that features low, and the information provided at the DGASPC simple words and expressions that are easy to does not always improve predictability. In only 6 understand; and out of the 20 counties where detailed information • making clear that the petitions filed with the about the appeal procedure is available do the court are exempt from a registration fee. 403 GD no. 430/2008, Art. 6. 404 Institutional survey Q3D. 405 All 20 counties declare that providing information about filing an appeal against the disability degree is mainly the responsibility of the CEPAH Secretariat. However, there are 3 counties where the CEPAH members or the president or the commission share this responsibility, 3 counties where information is also provided by specialists of the SECPAH, and one county where the Services department of the DGASPC also participates in this activity. 406 Operational Procedure excerpt, Cluj County Council, CEPAH, page 1, point 6. 407 Sălaj Operational Procedure, DGASPC Sălaj, P.0.10.01, Edition II, Revision 2. 186 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Example of good practice: Operational procedure regarding appeals at CEPAH Sălaj Chapter 7 I 187 However, a standard document describing the the other two counties only offer it to those who appeal process in simple steps, such as the one expressly request such information. In any case, provided in Box 9, is only available in 7 out of the in all 7 counties, the standard document is only 26 counties/sectors surveyed. This document is provided after the CEPAH evaluation, possibly sent available at the CEPAH secretariat, and only 4 out together with the certificate, but not at the moment of the 7 counties have it. It is distributed through of filing the request for the disability assessment. other services as well, such as the SECPAH, Interviews revealed that people with disabilities SECPAH register desk, DGASPC register desk, or did not receive information and/or guidance other departments of the DGASPC. Moreover, this before filing the appeal with the tribunal, except for standard document is handed out to all applicants information regarding the 30-day deadline written ex officio by only 5 CEPAH secretariats, while on the disability degree certificate. 7.3 7.4 “On that very day, with all the documents “- When and how did you learn about how to actually make the on me, I went to the tribunal. The lady at appeal? Did you have an overall image of all the steps to take the desk told me it was very easy to file a from the beginning, or did you learn step by step? petition. I asked whether there was any - I learned the way, because nobody gives you the exact standard petition, but she told me, ‘What information. You are a little bit hanging on a tree, and the tree petition, lady? Go on the internet, you’ll itself is hanging too if you don’t try to do something by yourself find a petition there.’ I also asked whether or through your acquaintances or ... I don’t know ... It’s quite I would be needing a lawyer: ‘What complicated, and the steps are quite cumbersome.” (Interview lawyer, lady, it’s just a simple petition to with a man with disabilities, 18 years old) make, and you enclose the documents.’” (Interview with the mother of a woman with disability) The CEPAH members generally agree with to 10 (fully accessible), CEPAH members gave the persons with disabilities. Less than 40 percent of DGASPC sites an average score of 4.7 in terms the CEPAH members interviewed report that they of how easy they are to use by visually impaired find information about how to appeal the disability persons, and with only an average score of 3.2 in degree certificate on the DGASPC site, published terms of how easy they are to use by people with visibly, and in an easy-to-understand format intellectual and understanding impairments. These (complete or partial), with details regarding the accessibility scores show that in many counties, petitioner, the institution where it should be filed, information on the DGASPC sites is not accessible the format, obtaining free legal assistance, how for these types of disability. to withdraw an appeal, the duration of the trial, Therefore, CEPAH members claim, the majority etc.408 Moreover, the accessibility of the existing of people learn about the right and ability to appeal information is very low. On a scale of 1 (not at all) the disability certificate from the public social 408 A share of 25 percent state that the information is complete, while 14 percent say that the information is partial. The remaining 31 percent of respondents say that the DGASPC site in their county/district does not include such information, and 30 percent do not answer the question. Opinion survey Q3B: Practices and experiences of CEPAH members (N = 65), in 24 counties and 2 districts of Bucharest, January-February 2021. 188 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM assistance services (SPAS), or from the certificate obstacles in terms of access, from not being aware itself. And the two main sources of information of the mechanism, to communication barriers, poor regarding the steps and documents required for education, costs associated with the procedure, the appeal process are the SPAS and the CEPAH residence environment, or fear of retaliation. secretariat. In the perception of CEPAH members, To this end, the surveys with practitioners tested relatives, friends, neighbors, social networks, two measures to improve accessibility and fairness and NGOs are marginal sources of information of appeal information: (i) the first measure concerns regarding the appeal. By contrast, interviews establishing the obligation to provide information conducted with people with disability for the on the appeal procedure by supplementing purpose of this report showed that, in most cases, the current normative document with specific relatives, friends, neighbors, social networks, and provisions—who must carry out the task, how, NGOs have been the main sources of information with what information, etc.; and (ii) the second and support for the appeal process. measure concerns drafting a distinct document Providing accessible and fair information is in the form of “guidelines” (“how to appeal the a key requirement for any complaint and appeal disability degree certificate”), including an easy- redress mechanism, without which people with to-understand description of the actual steps to disabilities cannot adequately access justice. All take when appealing, which document the CEPAH persons with disabilities who are unhappy with secretariat would need to send to beneficiaries, the resolution of their disability degree certificate together with the disability certificate and other must have reasonable access to the necessary documents. Furthermore, this document should sources of information, advice, and expertise to be made available on all relevant institution web appeal based on fair, informed, and respectful pages, at the very least the ANDPDCA, the County terms. Furthermore, the institutions in charge Councils, hospitals, DGASPC, and SPAS. Figure of disability assessment (DGASPC, SECPAH, 46 shows the opinions of CEPAH and CEPAH CEPAH, ANDPDCA) must provide adequate secretariat members concerning the two measures. assistance to dissatisfied persons who face certain Figure 46: Practitioners’ opinions regarding two possible measures to improve information regarding the appeal, on a scale of 1 to 10 (average scores) Establishing the obligation to provide information on the appeal Drafting a distinct document in the form of “guidelines” (“how procedure by supplementing the current normative document with to appeal the disability degree certificate”) specific provisions 10 10 9 9 8 8 7 6.3 7 6.1 6.4 5.4 5.6 5.3 5.8 6 6 4.7 5 5 4 4 3 3 2 2 1 1 CEPAH members CEPAH secretariat CEPAH members CEPAH secretariat How good is the idea, on a scale from 1-bad How good is the idea, on a scale from 1-bad to to 10-good (average score) 10-good (average score) How realistic the idea is, on a scale from How realistic the idea is, on a scale from 1-unrealistic to 10-realistic (average score) 1-unrealistic to 10-realistic (average score) Source: Opinion survey Q3B: Practices and experiences of CEPAH members (N = 65) in 24 counties and 2 Bucharest sectors. Institutional survey Q3D: Appeals on the disability degree and disability type certificates (CEPAH Secretariat) in 24 counties and two Bucharest sectors, January-February 2021. Chapter 7 I 189 According to practitioners, the two measures increase stress and noncompliance. Drafting proposed are somewhat of “a good idea,” with guidelines to be universally distributed could average scores between 5.6 and 6.4, on a scale of work if the guidelines were developed nationally 1(bad idea) to 10 (good idea), but less realistic, and provided to counties/sectors. If just a new with average scores between 4.7 and 5.8, on a requirement was delegated to county level, the scale of 1 (unrealistic idea) to 10 (realistic idea). In chances of implementation are limited to several their experience, this kind of measure has a low counties at most, where such materials are already chance of being implemented. A change to the law developed (such as the good practice in the county under current circumstances, without increasing of Sălaj, presented above). the available institutional resources, would only 7.2. Key reasons to appeal Romania’s disability degree certificate appeal losing the right to have a personal assistant. These mechanism does not include a continuous learning situations seem to be frequent in the case of children dimension. A good complaint and appeal redress transitioning to adulthood, due to the different mechanism409 uses relevant measures to identify criteria for establishing a disability degree in the lessons for improving the mechanisms and case of a child and that of an adult. preventing future dissatisfaction and damage. Interviews with people with disabilities To this end, the frequency, patterns, and causes confirm the three reasons mentioned by CEPAH of dissatisfaction are analyzed regularly, as well representatives, but also add other reasons for as the strategies and processes used to solve the appeal, such as the perception that the file was not complaints. In the case of the Romanian disability analyzed sufficiently, that not all the conditions assessment system, not only do people with contained in the medical file were taken into disabilities only have the legal path available to account, that the condition for which the criteria resolve their complaints, but the institutions in specify a lower disability degree were randomly charge do not even identify the key lessons or take selected; problems with classification in the case steps to improve the mechanisms and prevent of conditions with temporary manifestations or dissatisfaction. Since 2017, when the new legal conditions that cannot be identified within the framework was included, until the present, no Romanian medical system;411 cases where the right county covered in the research conducted a rigorous to a personal assistant is not granted because the review of the reasons for appeal. person has no caretakers and the DGASPC does not According to CEPAH representatives, the three have a public personal assistant service for cases most frequently cited reasons why people appeal in which hire-able persons cannot be identified in the certificate are: (i) dissatisfaction regarding the the residence community; that the PIRIS cannot disability degree; (ii) dissatisfaction regarding the be appealed against (just the certificate), and the valid term of the certificate; and (iii) a lowering person’s PIRIS makes no recommendation for any of the degree from one assessment to another, or type of services that the person would need, either in the case of minors transitioning to adulthood. because the services are not available or because Dissatisfactions related to the disability degree or there are no vacancies; and the lack of ethics the lowering of the degree are mainly connected and corruption at the level of the CEPAH or the to the impact on the person’s revenues,410 namely DGASPC. losing benefits, receiving smaller benefits, and 409 UNDP (2017: 1). 410 According to ANDPDCA, from January 1, 2021, the level of social benefits provided in Art. 58, para. 4 of Law no. 448/2006 on the protection and promotion of the rights of persons with disabilities is as follows: the adult with severe deficiencies benefits from a monthly allowance of 350 lei, to which is added the complementary monthly personal budget in the amount of 150 lei, regardless of the person’s income. The total monthly value is 500 lei. If the adult with severe deficiencies is entitled to a personal assistant, then he can opt for an accompanying allowance in the amount of 1,386 lei per month or a personal assistant employed by the mayor’s office in the locality of residence. In contrast, for the adult with marked deficiencies, the corresponding values ​​ are reduced to a monthly allowance of 265 lei, a complementary personal budget in the amount of 110 lei, respectively a total value of 375 lei per month. The adults with a medium degree of deficiency benefit only from a complementary personal budget in the amount of 60 lei per month, while those with a minor degree receive no benefits. 411 For example, due to the lack of certain technologies, equipment or specialists. 190 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7.5 7.6 “For instance, we knew in 2017, the girl “The first appeal was in 2019, and the second one in 2020. ... was 17 and we knew she had problems Because, from what I read in the law, it says that, for people with the temporary epilepsy diagnosis. suffering from epilepsy, when they go to the commission for the There is a specific diagnosis for temporal second time, they are assigned a permanent disability degree. lobe trauma. Here in Romania, all MRIs Since there has been no improvement in so many years, in 19 couldn’t show anything, same for years, the disease is still there, it did not go away. Why didn’t you the EEGs. Everything seemed ok, and assign a permanent degree? Because they say the same thing: nonetheless, she would have those if you have ... epilepsy before the age of 16, I believe, or 26. ... So, seizures. To validate it and prove that the they picked epilepsy, not his actual disease, tuberous sclerosis, diagnosis was real, we did an MRI and which they should have done, because it’s a rare, severe disease spectroscopy, to prepare for the age of and they should have taken that into account, but they said 18 when she would become an adult. it wasn’t in their codes. Ok. But they have ‘rare disease’ in their And when we saw that they still assigned codes. They didn’t go for that, they went for epilepsy. ... Why not a lower degree to her, I told you that a permanent degree?! The court didn’t do it either, they gave it we asked for a re-assessment and we for two years. And you can imagine, in 2021 I have to go to the went to Italy. We went to Italy for the re- commission again. I am fighting the system. Fight to get ... what? assessment ... because epilepsy, according They will assign it for one or two years again, they will assign a to the existing criteria—at least that’s “serious disability” degree and we’ll go to court again, the court what I was told, it would be maximally a will change it to “severe” again, and that’s how I spend my time serious disability. The problem is, how can between the commission and the court ... First of all, it’s a reason you prove, for instance, an epilepsy seizure of stress, for myself and for the child as well. But for me ... Maybe I that lasts for three days in a row, going won’t be here tomorrow, I had a stroke in 2016, so maybe I won’t stronger and then decreasing in intensity. be here any longer. Who will go with this boy, because he will How do you do that?” (Interview with the not go by himself. What will become of him? Although it’s a small mother of a woman with disability) amount, those 500 Lei, but at least it’s there.” (Interview with the father of a man with disability) “There is a public day care center for adults in Timișoara and it’s overcrowded. And there 7.7 is also a private center that works with people with severe impairments and Down syndrome...and they can’t manage. There’s no possibility that they can manage. For the public center, there are 3-years long waiting lists. That’s what we are talking about. It’s absurd to have to wait for someone to become so sick that they can’t go to therapy anymore, so that you can take their place—or wait for them to die. Here...everything is connected. If there was a day care center where I could take her...or protected units...but not one or two in the county, because you can’t do anything with those. There should be protected units where they can be employed. To be honest? We would not have appealed against the degree, if that were available. But like this...she has nothing. No revenue, no possibility for employment...nothing. Nothing. And...it’s not only about her. It’s about the whole family, because the rest of the family is also involved in this, and then everything reflects on the family. How long will the family be able to stand? And when the family cannot take it anymore, then it’s terrible.” (Interview with the mother of a woman with disability) Chapter 7 I 191 7.8 7.9 “The lawyer shrugs and says there is “I had all my tests and the whole file and I went to the center nothing she can do, she needs to do for people with disabilities in Timișoara. And I got an allowance these processes because she is asked that made me laugh. It was just mockery: 39 Lei per month, and I to, and there is nothing she can actually should go with new health tests every year. Then I said, it was not do. Imagine that we are in court now worth it. For that little money, all that hassle and all those tests, it’s for so long already (since 2019), and not even worth going back. So I gave up. I appealed, but I got no now in autumn, in Timișoara, I am sure answer. ... Can you imagine, with the money I get, I should go to the you found out about that—the chief Tribunal too ... It’s really useless. I will make a fool of myself, for such from the adults [SECPAH] was taken a small amount ... If this is what the system is. ... I just know how I in for bribe. Five thousand Euro for a was dissatisfied. You go to do some blood tests and it’s more than certificate, for a degree with a personal 30 Lei. ...Everything costs money. ...If you go to have your tests done assistant. I mean...other people who in the public system, through the Insurance House, it’s not possible; need it don’t get a “severe” degree, only at the beginning of the month—and when you go at the while...even the lawyer told us that we beginning of the month, they tell you there is no more place, other can go and file an appeal. ... The integrity people were scheduled, so you still have to pay. I don’t know if it’s of the commission...even that.” (Interview worth it. ...You don’t even get back the money you pay for the tests, with the father of a man with disability) in one year.” (Interview with a man with disability, 60 years old) Other people with disabilities who were interviewed, as well as the NGOs, reveal that some people drop the appeal because of the cumbersome procedure and the costs involved, particularly those with a medium disability degree, people from rural areas, or people with poor education. “The person supported by the organization suffers from leukemia and serious vision 7.10 problems. They had a certificate until last year, with a ‘severe disability with personal assistant’ degree. At the last assessment, they got ‘severe disability, no personal assistant.’ The organization reviewed all the aspects and noticed that not all the medical and psycho-social criteria had been considered, as the law provides. They appealed and pointed to what was not taken into account. The visual acuity was not right for a ‘severe disability with assistant,’ but the other criteria, yes—visual field and other criteria. The court ruled in favor of the NGO. The proceeding continues only if the opponent files for appeal. Our organization files an appeal whenever we deem that the criteria for assigning a disability degree were not complied with. If a member feels they have been treated unjustly, the organization explains to them whether the criteria have been observed. In some cases, the members ask for assistance in court, even if it is explained to them that the criteria have been observed. They get support in those cases too.” (Interview with an NGO representative, Brașov) 192 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM CEPAH members think that there are virtually no cases of people with disabilities who do not file 7.11 an appeal against the certificate because they fear upsetting the commission members, and that would affect their next assessment.412 However, such cases were mentioned in interviews with persons with disabilities, NGO representatives, and lawyers. It is not possible to estimate how many such cases there actually are, or if they are concentrated in certain “A lot of people don’t file an appeal because of counties or categories of persons with disability; the cumbersome procedure and the related costs.” but they exist, and should not be neglected. (Interview with an NGO representative, Bucharest) 7.12 7.13 “Psychologist – I tell you of a situation “The lady was dissatisfied when she received the disability from another county, from Sibiu county, certificate and she communicated that she was dissatisfied and it is the situation of my father who had they were to assign another degree to her... so they told her to an amputation and in the next year stop complaining and not file an appeal, because if she will, they they cancelled his assistant and had we will remove even the degree she got - well, the degree that her filed an appeal he could have lost that husband got. ... They didn’t tell her too much about how to file degree, as well.” (Interview with an NGO the appeal, since they discouraged her. But I don’t know any representative, Mureș) other details about that conversation, I know that they lady was confused.” (Interview with a lawyer) 7.3. Registering appeals The mechanism for appealing the disability certain cases are dealt with, which is important degree certificate does not follow the transparency for proving the legitimacy of the mechanism and principle that should underpin any good complaint helping improve confidence about its efficiency. and appeal redress mechanism.413 According to The current mechanism does not meet any of these the transparency principle, the petitioning person requirements. should be regularly informed about the status of Under the terms of the new legal framework the appeal, and information should be published regarding the procedure for appealing the disability about the performance of the complaint/appeal certificate, established by EGO no. 51/2017, mechanism to increase confidence in its efficacy and the secretariat of the Higher Commission for to satisfy any public interest that may be involved. Assessment of Adults with Disabilities no longer This can be achieved by publishing statistics, case receives and registers the appeals. As a result, studies, or more detailed information about how in most counties, CEPAH secretariats no longer 412 On a scale of 1 (not at all) to 10 (fully), the average score per the whole sample is 1.8. Opinion survey Q3B: Practices and experiences of CEPAH members (N = 47 valid answers), in 24 counties and 2 districts of Bucharest, January-February 2021. 413 UNDP (2017: 2). Chapter 7 I 193 register the petitions, but rather refer petitioners to and assignment of a disability degree, or to allow the competent authorities. Within the sample of 24 evidence-based corrective measures to be designed. counties and 2 Bucharest sectors,414 only 3 counties reported that appeals regarding the disability degree and type are still filed with the CEPAH secretariat. Furthermore, the CEPAH secretariat 7.14 also has the legal responsibility to manage an appeal book.415 However, not only they do not register the petitions, but in most countries, they no longer keep the appeal book. Data from the institutional survey show that in 13 counties and 2 Bucharest sectors, the CEPAH secretariat no longer has an appeal book. In one county, the book is present but was out “When I filed the complaint? Nobody even looked of use after EGO no. 51/2017 was passed. In just at me. It was like it wasn’t there. ... Well I met two 10 counties did the CEPAH secretariat keep and people. The person at the entrance... The order continue to fill in the appeal book. However, even in person, the security person, whatever he was... these 10 counties, the data may be incomplete, since He asked me what brought me there. I told him there are several registration mechanisms in place, I needed to file a complaint, and he gave me with no coordination or communication with each directions, he showed me where to go. I went to other (especially tribunals and County Councils). the window, I gave the complaint... They told me... The consequences are a lack of transparency and You should wait... You will receive our point of view solid data to enable monitoring and analysis of within 3 months. And I waited, until I gave up.” dissatisfaction regarding disability assessments (Interview with a man with disability, 60 years old) 7.4. Appealing disability certificates Besides the insufficient, inadequate information to estimate the duration of the certificate appeal provided to people with disabilities about the appeal procedure.417 Only 9 counties (out of the sample of procedure (Section 7.1), data analysis conducted 26) provided estimations based on the documents for this report show the following problematic that exist at the CEPAH secretariat. Thus, disputes aspects: the long duration of the litigation; lack of related to disability certificates could last between or insufficient legal assistance in court; procedural 15 and 1,000 days, with an average duration of aspects that are not adapted; and lack of information approximately one year. There are considerable or specialty support at the court level to “translate” differences between counties. In Bistrița-Năsăud the medical-psycho-social criteria. These issues are county, for instance, disputes are reported to last examined in the sections below. between 15 and 30 days. In Neamț county, the period increases to 90–150 days, while in Cluj, the 7.4.1. Duration of the Litigation duration of disputes varies between 200 and 1,000 days. Interviews with persons with disabilities In contrast to the legal requirement,416 these cases do and NGOs confirm the long duration of the appeal not seem to be judged with urgency. With the lack procedure; some people even get a new assessment of data mentioned above, the majority of CEPAH to renew their certificate before they get a final secretariats in the surveyed counties are not able decision on the existing one. 414 Institutional survey Q3D. 415 GD no. 430/2008, Art. 15 (2) letter g. 416 Art. 25 para. 7, Law no. 448 of 2006. 417 The duration is measured from the moment when the appeal is filed with the CEPAH Secretariat/tribunal until the moment when the court ruling with the solution for the appeal is received and remains final. So, if applicable, it includes the first trial and the appeal. 194 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7.15 7.16 7.17 “The procedure was very long, more “We are on trial since July 2019, “The appeal that our NGO than one year. The whole case would now we have this thing about filed in October went not end. I filed the appeal in March forensic medicine, we must do to trial on 20 January; 2019; in 2020 I received the judgment everything in 5 days, everything, the judgment will come from Buftea, then the Court of Appeal it’s very difficult. If they did through in 30 days. If there filed an appeal. The trial date at the everything there, where forensic will be an appeal, we’ll Court of Appeal was November 2020. medicine is, it would have been get to March. Until they Ruling was adjourned three times, easier, but they just gave us schedule the appeal, we’ll three weeks in a row, in his case. Due some papers and told us, solve be in May. The conclusion— to the pandemic, a lot of trials were this; it’s very slow, with this long periods for getting a adjourned, as they were not criminal COVID madness in the hospitals; judgment.” (Interview with trials.” (Interview with a man with we had the neurosurgery today.” an NGO representative, disability, 41 years old) (Interview with a woman with Brașov) disability, 20 years old) 7.4.2. Legal Assistance in Court Most people with disabilities have no access to legal certificate in court, through their own lawyer assistance when formulating their statement of (paid by them or their guardian/family), in some claims or in sustaining their claims in court, NGOs counties, and by themselves, with no specialized report. Data available from CEPAH/DGASPC assistance in other counties.418 There is no solid data secretariats show that most persons appeal the available to check these statements. “- Would you say that access to the assistance of a lawyer is a problem for persons with 7.18 disabilities? - Yes. They cannot afford it, and they are not aware of it. They have no access to it, because they don’t know how to get there, but if they went and asked for it, I think they would receive it. That’s what I want to make clear. That the authorities would provide free legal assistance for them... if they got to the Bar or before the judge and asked for it, I believe they would be given that. But they don’t know how to get there, and there are no support bodies available. ...Persons with disabilities are not aware of their rights; there is no one to explain these to them, and they are not effectively represented. In the two cases I worked on, those who filed the appeal, in their financial standing, they could not afford hiring a lawyer, paying a lawyer. And in the Parkinson case...I believe the lady was not even aware that legal public aid was available, because she was very intrigued about the existence of ACTEDO—an organization that provides lawyers pro bono. ...Probably she had not thought that someone could help her for free.” (Interview with a lawyer) 418 Out of the sample of 24 counties and two Bucharest districts in the institutional survey Q3D, 18 CEPAH secretariats do not have any data about the type of legal assistance that most beneficiaries receive when appealing against their disability certificate. The other eight counties provide different answers. Thus, four counties report that most of the beneficiaries file the appeal with the competent court, through their own lawyer (paid by the person/guardian/family). Three counties state that beneficiaries file the appeals themselves, with no specialised assistance. There is only one county that claims that most people receive free legal assistance. Chapter 7 I 195 It is certain, however, that free legal assistance is they provide these services through a member of rarely mentioned by all stakeholders.419 their organization who, in turn, is a parent or a From the point of view of the representatives of family member of a person with disability enrolled the judicial system (judges and lawyers), the under- with the organization: “We had legal advice too; use of judicial public aid is primarily the effect of unfortunately, he left this world too early, he was a lack of awareness about its availability and how a father.  We started working with another legal to access it. In their opinion, the DGASPC should adviser and we will come back, step by step; the make sure that all persons who have/do not have a new legal adviser was not familiar with the field, disability degree and type are aware of this, along but he is getting used to it now.”421 with the fact that the certificate may be appealed Interviewed persons who received assistance within 30 days. from a lawyer in the appeal process have a wide NGOs also provide legal advice for persons range of opinions regarding the importance of such who appeal disability certificate.420 The majority assistance, from “we wouldn’t have done it without of these lack budget for a specialized department; a lawyer” to “it was of no use to us.” “Let me tell you—we wouldn’t have done anything without a lawyer, ... we went to a lady lawyer right away; on the other hand, we were also lucky. It’s a lady who has a little grandchild with disabilities. She told me that she didn’t know anything about this type of 7.19 cases, because there are very few of them in the country and, since she has a case in her family, she very much wants to get involved, because it’s for her benefit too, personally and professionally. She didn’t even charge me; I paid that percentage on the day when she would go to court, I paid for her transportation every time ... It would have been difficult without a lawyer, it was all full of aspects that we were totally unfamiliar with; they are used to file an appeal for every small thing, and open every little door; I would have needed assistance all the time.” (Interview with the mother of a woman with disability)  “For the trial in court, it was not necessary, we won without a lawyer. For the appeal, 7.20 yes, we called a lawyer who knew what the medical aspects meant, too. We asked for a lady lawyer and we paid her. For Timișoara, the fee for this kind of a court case is around 2500 Lei; the lady only charged us 800 Lei, even the judge was surprised. We went to her especially, because she used to be a medical nurse; I looked for some information in advance, I didn’t just go to no matter whom, it’s about medical diagnostics.” (Interview with a woman with disability, 20 years old) 419 According to EGO no. 51/2008, public judicial aid is granted irrespective of the applicant’s material standing, if the right to judicial assistance or the right to legal assistance free of charge is set forth by a special law, as a protection measure, in consideration of special situations such as minority, disability, a specific status and other similar aspects. In this case, public judicial aid is granted without the criteria set forth at art. 8 being met, but only in defence or for recognition of rights or interests resulting from or in connection with the special situation that justified the recognition by law of the right to judicial assistance or legal assistance free of charge. Furthermore, according to the Civil Procedure Code (art. 58), in certain situations, the court, upon the request of the interested party, may appoint a special curator from among the lawyers designated by the bar especially for this purpose for each court of law, who will have all the rights and obligations established by the law for a legal representative. 420 Out of the 20 NGOs interviewed, six declared that they offer legal advice services. 421 Interview with an NGO. 196 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7.21 7.22 “- Do you think the results would have been different? “- If you were to start again, what would you do in a The trial terms would have been shorter...if you had a different way?  lawyer? - I wouldn’t get a lawyer at all; that way, they - I don’t know... I... I don’t even know if that is the would be forced to talk to her [her daughter with problem, after all. In my opinion, disabled people disabilities]. First of all, I am sure that, if we had a should not have to go to court... They should... As it lawyer from the beginning, we would not have used to be: you could file an appeal with the National won, because the lawyer would speak for me or for Authority for Disabled Persons, in Bucharest. But her. Somehow, in these appeals, the judges should now, you just feel like a leaf on the water. You belong be obliged to talk to the person with disabilities, nowhere. Nobody cares what happens with you... These just like in the case of children, when they have degrees are assigned... This is the most revolting thing to decide which parent they will be with, just like for me: how can someone assess you, for the first time, in the case of a divorce. ... But for the appeal, we when you go from minor to adult—how can they did get a lawyer, because I don’t understand their assign a disability degree without even seeing you?! concepts, and they didn’t even talk to her at all; Based on...what?! Just on some reports we received I asked to speak to them myself, but they didn’t from the specialist doctor.” (Interview with a man with accept that either, so I got a lawyer.” (Interview with disability, 18 years old) a woman with disability, 20 years old) 7.4.3. No Homogeneous Evidence being too close to each other, or the reasoning of the judge. Procedures at Court Level Objection on grounds of the appeal being filed too The appeal proceedings are characterized by late. According to CEPAH secretariats, in most significant variation in terms of the procedures that cases, people do manage to file their appeal with the have been adapted by different courts. The same competent court within the legal deadline, meaning person may file two appeals with the administrative no later than 30 days from communication.423 There litigation section of the same county tribunal, are, however, situations such as hospitalization or and have two very different experiences. Overall, institutionalization,424 whereby the person cannot according to CEPAH representatives, judicial comply with the legal deadline. In such cases, the procedures are to a small extent adapted to enable defendant (the County Council, CEPAH) usually the person to file with the court to appeal against requests the court to admit an objection on the the certificate, as per the UNCRPD (Art. 13).422 The grounds of the appeal being filed too late, because absence of homogeneous evidence procedures at the petitioner has filed the statement of claims later court level involves issues such as the admissibility than the deadline specified by law. Some courts of the challenge regarding late submission of the admit the request of CEPAH, while others dismiss appeal, admissibility of testimonial evidence, the it on the grounds of the appeal being filed too hearing being declared non-public, court dates late, as per the legal provisions on administrative 422 Half of the CEPAH members participating in the opinion survey did not answer this question. The other half evaluated the extent to which judicial procedures are adapted to the needs of persons with disabilities with an average score of 5.2 on a scale of 1 (not at all) to 10 (fully). Opinion survey Q3B: Practices and experiences of CEPAH members (N = 65), in 24 counties and 2 districts of Bucharest, January-February 2021. 423 Institutional survey Q3D. 424 Beneficiaries of a disability certificate who are institutionalized may be deprived of access to justice when the certificate is communicated to the head of the centre or the case manager. Chapter 7 I 197 litigation.425 Both persons with disability and find various solutions, individuals who have this NGO representatives mentioned these practices experience, at least in some cases, are deprived of in interviews, but while the NGOs are able to access to justice. “We did have situations of people who did not manage to appeal. In order for the persons 7.23 who receive their certificate by mail to no longer have access to the appeal, there was this trend not to count the term as of the day when the envelope arrives in the mail. We had this kind of a surprise two years ago, so last year we were more careful and paid attention to all the mothers (and had them) go take the certificate, not wait for it to come by mail, and there was this mother who told me—you know, they reprimanded me for not waiting to get it by mail.” (Interview with an NGO representative, national association) Court hearings are often public. Although during ”The hearing may become non-public even without the trial, people with disabilities must present a request, or the judge could raise the issue without information pertaining to their private life, as well a request from that person, because maybe that as issues that pertain to their physical or mental person is not aware of this right, especially if they health, the hearing is public. Therefore, in some represent themselves.”427 In some countries, at least cases, applicants and their families find themselves in cases selected based on the assessment of a social in a difficult situation. The person may request assistant, hearings are conducted behind closed that the hearing be non-public,426 but a change doors, in a special space, so that the person is less in the regulations (Law no. 448/2006, Art. 25, likely to be intimidated or placed in an awkward Legal assistance) could be considered as well, by situation. introducing a specific provision for this purpose: 7.24 “Then another problem is that they may have a problem and not be able to attend in court. In the Parkinson case, I was discussing with my wife [medical practitioner] that we can’t have him attend in court, that he wouldn’t be able to deal with it because there are too many people, and being in a courtroom would make him agitated. Definitely, if he were to come, he should have been alone with the judge, with no other people present. And maybe even in a smaller room... In an office arranged especially for this, like in the case of children. ... I mean, something to ensure a more relaxed environment, something pleasant, with nothing to intimidate them. So...yes, maybe modifying the proceedings would be a good thing. Totally modifying them. I mean, not in a normal hearing session. The person should be alone when they get to the courtroom.” (Interview with a lawyer) Other adaptations of proceedings.428 Many other example, standard appeal petitions are not available proceeding modifications that were missing or in many counties, at the DGASPC or the courts. would have been necessary were mentioned in Furthermore, in most counties, those who go for interviews with people who appealed the certificate, an appeal do not receive any advice before filing it, or in interviews with legal system representatives going to court, or during the trial. about how the appeal process took place. For 425 As per the legal provisions on administrative litigation Law no. 554/2004, Art. 11 (2), for solid reasons, in the case of unilateral administrative papers, the request can be filed after the deadline set forth at para. (1), but no later than one year after the paper was issued. 426 Civil Procedure Code, Art. 213: Carrying out trials with no public attending. (1) In cases when investigation on the case or debates on the merits of a case in public session would harm the morality, the public order, the interests of minors, the private life or the parties or the interests of justice, as applicable, the court, upon request or ex officio, may order proceedings to be conducted fully or partly without any public present. 427 Interview with a lawyer. 428 OHCHR, International Principles and Guidelines on Access to Justice for Persons with Disabilities. 198 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7.25 “Right, so there is counseling with the person with disabilities, right? But there should be counseling with the family, too. Families no longer have a personal life, and I don’t only mean a personal life as a couple ... But if there are siblings in the family, those children are almost like nonexistent. Because all the energy goes to...and everything, everything... goes to the person who is disabled.” (Interview with a woman with disability, 20 years old) 7.26 7.27 “- Was there a specialist who prepared you for “If I was certain that some rights are involved, I did not give the court proceedings or provided support up those rights. I wasn’t like this in the beginning, you know. with the proceedings (psychologist, social As much as we could, we managed by ourselves. We sold assistant, doctor, etc.)? everything in the house... as Romanians say, everything that - No, no. was not tied on a rope. We sold everything. But when there - Would you have needed one? was nothing else left to do, that’s when we actually turned - It was not easy for us, because you are under to the rights that are there. That’s when we got in contact stress all the time, you are nervous...now the with the rights of the people with disabilities and the rights child is not exposed to these things. ...He does of personal assistants. That was the first time for me (2017). not realize these things, but for us the parents, I was lucky, because I used to work in human resources, so it’s a stress, of course. I was able to understand some things—regarding salaries, - Along the proceedings, would you say that regarding... I knew how to look for that in the laws. I am one you received enough information about of the mothers who fought for the 50 percent increase for all the aspects that were important for the children with special educational needs. I was wearing this proceedings? T-shirt... Even in the Parliament, I went and spoke about this. I - No, they just asked us what other documents was wearing this white T-shirt with “strike” written on the front we brought. Well, wait a second, first I need and “respect the rights of children with disabilities and special to know what documentation I should bring... educational needs”. That’s what I wore between December where could I... I just learned by chance that 2017 and July 2018, because everybody was telling me, you can also bring reports from a neurologist, you don’t have this right, if you don’t like it, go to court. So I because there are some scales that he said, well wait, that’s not really true... You go to court for just could fall within or not... and all his needs everything? ...This had huge consequences: the rights of are specified there very clearly. But nobody personal assistants in Timiș, the 15 percent bonus, the meals recommended that to us. I just found out quota, the ranks, money for leaves... It’s all my fault. That’s why from other parents of children with problems.” I tell you, with the trial and the appeal, it was the same—I (Interview with a man with disability, 18 years did know some things, but I didn’t know what it meant.” old) (Interview with the mother of a woman with disability) Chapter 7 I 199 Other proceedings adaptations mentioned in the interviews concerned the fact that there is no support 7.28 service during the proceedings; such support could be provided by NGOs or volunteers. ”A support person to call them before the trial, ask them how they feel, do they have any questions about how the trial will go... do they want to come to court, see the courtroom, do they need any special measures such as a chair maybe, to be seated rather than standing, to be alone with the judge, with no public “In the case of deaf people, when they are given and other similar things.”429 Another problem stems documents, there should be a sign language from the fact that the person cannot be represented interpreter present. If they don’t understand, they in court by a guardian with a special mandate, could miss the deadline for the appeal.” (Interview strictly for that trial;430 instead, the person must be with a man with disability, 41 years old) placed under interdiction and a guardianship must be established, which requires a reassessment with the Forensic Medicine Institute (IML) and special efforts by the family. “- Did anyone from the commission or the assessment service informed you that you have 7.29 this right to appeal if you are not satisfied, or did someone else advise you? - No. The disability degree assigning commission didn’t tell us, and neither did the social assistance service, nobody told us. I can say that, luckily, I was informed about these things, because two years before [the daughter turned 18] I started to look for information about these things personally; but even so, I didn’t know about everything. ... I knew that we had to file an appeal in court if we don’t get the same degree... I did know that, but I did not know what that meant. ... I wrote in the appeal petition that I am representing her, because she has difficulty speaking. You can imagine, I didn’t know I needed a power of attorney, I didn’t need I needed guardianship... I didn’t know any of those things... And we got there, we both stood up and took some steps forwards and of course, the judge asked me, but who are you? Well I am the mother. So what are you doing here, what do you want? ... She told me very nicely that she was going to talk with me, but that nothing I say could be noted, because I have no power of attorney or anything. She is deemed to be an adult... So then the judge lady advised us about the guardianship... The neurologist and the psychiatry lady also told us about the guardianship, but she didn’t tell us it was an emergency. She only told us that we should do it... We didn’t even consider it. And after the judge lady told us, we did it. ... We are still in court. We appealed in court against the disability degree, the trial is on since July 2019. We are now struggling around the Forensic Medicine Institute thing... It’s a marathon... We have to do everything in five days, everything. It’s very difficult.” (Interview with a woman with disability, 20 years old) Other missing adaptations concern the fact that social disabilities. In fact, it is not clearly regulated no independent experts are summoned to the court, what evidence is admitted in these cases and such as psychologists or social assistants, especially whether witnesses are allowed or not; these issues in the case of people with intellectual and psycho- are strictly for the individual court to decide. 429 Interview with a lawyer. 430 The UK, for instance, has the institution of a litigation friend who can represent a “protected party” (child or adult) in court. A litigation friend may be a parent or guardian, a family member or a friend, a lawyer, a representative of the Protection Court or a person who has a long-term or a permanent mandate. For civil cases, the “litigation friend” is appointed by request, by court decision, after the court checks that it can make decisions about the case in a correct, competent manner and its interests are not in conflict with the interests of the protected party. After the check is performed by the court, the litigation friend receives an appropriateness certificate based on which they represent the protected party in the courtroom hearings. The litigation friend can be appointed at the beginning of the proceeding or at any time during the proceedings. Their mandate can end as soon as the protected party is able to represent themselves (for instance, when the child turns 18 or the adult is recovered), or at the end of the proceeding. If necessary, the litigation friend can be replaced during the proceedings. 200 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM learning could be a way to support those who disagree with the assigned disability degree and 7.30 reduce the number of appeals filed in court. And for those people who would still file in court, the DGASPC, through a dedicated department, could provide guidance services and refer people to free legal assistance, maybe under a collaboration protocol with the Bar Association and with NGOa, and prepare for the courts a list of procedural “In the Parkinson disease case, we asked for adaptations required for each person, based on testimonial evidence and the judge said that he data in their file and interactions with the person shall dismiss the testimonial evidence, because a and their family. Thus, the DGASPC could provide health status is not proven by witnesses, but by some type of intermediation between persons with medical documents only... It’s just that, in such disability and the courts, and support a correct, cases, as I said, you have to prove the everyday life, informed, and respectful process of disability the level of autonomy... things that only the family certificate appeals. or the people who are very close to the person are aware of. So, several other things need to be proven, 7.4.4. Court Substantiations when Rulings besides the health status of the person.” (Interview Favor People with Disabilities with a lawyer) The documentary review431 of court substantiation samples in cases of disability certificate Solving the issue of insufficient, non- appeals revealed two main aspects that the homogeneous procedural adaptations requires courts acknowledge when they rule in favor of changing the law and developing support services petitioners/people with disabilities. These are: (i) that operate along the administrative litigation no substantiation of the CEPAH decision provided tribunals. The DGASPC, however, could play a in the disability certificate (see Box 10); and (ii) more active part, from providing correct, complete, aspects that have to do with the procedure or the and timely information about the appeal proceeding interpretation of Order no. 762/1.992/2007 on to drawing up a detailed substantiation of the the medico-psychosocial criteria for assigning degree classification/non-classification solution a disability degree. The need for a detailed provided in the certificate, to providing support in substantiation of the CEPAH decision to assign a preparing the appeal petition and counseling for disability degree (or not) through the certificate, the dissatisfied person and their family. Developing more than “just copy-paste from the order,”432 was an actual complaint and appeal redress mechanism also mentioned in all interviews with judges and that respects the principles of accessibility, equity, lawyers as a key prerequisite for a fair trial. predictability, transparency, and continuous 431 In the institutional survey Q3D, CEPAH secretariats were asked to redact and provide the following to the research team: (a) two most recent court judgments that remained final in cases of appeal on disability degree certificates, irrespective of their results, and (b) the most recent court judgment by which a disability degree was changed (without ordering reassessment by the SECPAH or CEPAH). 11 counties provided one or two final court judgments. This sample was supplemented using other court judgments available online. 432 Interview with lawyer. Chapter 7 I 201 Excerpt from a final court judgment (1) No substantiation of the decision to assign/not disability degree (6 counties) is assigned. However, assign a disability degree some counties only provide verbal information, A substantiation of the CEPAH decision to which the person receives at the end of the CEPAH assign/not assign a disability degree, accessible to meeting, if the person attended it, or in some other all persons at the end of the assessment process, context (1 county); as well, there are counties is not available in all counties (see also Chapter where a substantiation is only released upon the 5). In the sample of 24 counties and 2 Bucharest beneficiary’s request (1 county). Moreover, the districts,433 six CEPAH secretariats reported that substantiation is accompanied by a specialist’s they do not provide a substantiation of the decision explanation in only 11 counties. The specialists who in cases where the applicant is classified into a provide the explanation on the substantiation are deficiency degree or for those in which the applicant either the president or some other CEPAH member, is not classified. The remaining 20 counties do issue or the SECPAH physician, or both.436 Most counties a substantiation of the CEPAH decision. In the (9 out of 11) report that the explanation of the majority of cases, the substantiation is drafted by substantiation is provided in simplified language. the CEPAH (in 16 out of 20 counties).434 However, Therefore, most counties lack a written document in only 4 counties is this substantiation a written with detailed information substantiating the document enclosed with the disability certificate, CEPAH decision to assign/not assign a disability with detailed information about the decision to degree that can be used in court. The absence of assign or not assign a disability degree, and which such a document makes the disability certificate can be used in court. appeal proceedings more difficult, both from the Most often, the substantiation is just a box that perspective of the petitioners and the judges who gets checked on the disability certificate,435 only have to rule in such cases. In addition, the detailed filled in for applicants not classified into a deficiency substantiation is recorded in the CEPAH meeting degree (in 8 counties); in other counties, that box is minutes in just three counties.437 But even in these filled in for all persons, irrespective of whether the three counties, a person who files an appeal against 433 Institutional survey Q3D. 434 In the remaining 4 counties, the substantiation is drafted by SECPAH and approved by CEPAH. 435 Box II in the disability certificate, according to GD no. 430/2008, Annex 1. 436 Out of the 11 CEPAH secretariats, 8 reported that the explanation is usually provided by the president or another CEPAH member; 2 mentioned the SECPAH physicians, and one declared that the explanation is provided by a CEPAH member of the SECPAH physician, as applicable. 437 The CEPAH secretariat: (d) draws up the minutes of the CEPAH meetings and (f) manages the register of minutes (GD no. 430/2008, Art. 15 (2)). An analysis on the minutes of CEPAH meetings is provided in section 5.1.2. 202 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM the disability certificate can request and receive regarding the aforementioned scenario. The an excerpt of the minutes of the CEPAH meeting, average scores, on a scale of 1 (bad/unrealistic idea) however, such a document would be of no use in to 10 (good/realistic idea) show that practitioners court. Therefore, the homogeneity of the court deem the scenario to be a somewhat “good idea” rulings is not possible without substantiations of but unrealistic. the decisions provided in the certificates, drafted The results of the analyses of Chapter 5 and by the SECPAH and CEPAH specialists who are subchapter 9.3 regarding the activity and CEPAH’s involved in assessing and determining disability. institutional resources provide explanation for One way to deal with the absence of that. Since the assessment commission members substantiations would be the following: (i) have about five minutes per case, on average, introduce a standard template for the substantiation to come to a decision, it is understandable why of the disability degree assignment/non- expanding their responsibilities is realistic only assignment, based on which the appeal against in some counties, while in most others it would the disability certificate could be formulated in be difficult or impossible to achieve. Therefore, to court; (ii) this document should be issued by make the appeal process more efficient, the process CEPAH (in correlation with the conclusions and of assigning a disability degree should first be made recommendations of the SECPAH assessment more efficient. Given the resources and institutional report), together with the disability certificate; and arrangements in place at CEPAH level, it does not (iii) at the end of the assessment process, should seem possible to substantiate the decisions given in be sent to the person along with the package of the disability certificates in a way that could serve approved documents. Figure 47 shows the differing as an input for the courts. opinions of CEPAH members and secretariats Figure 47: Practitioners’ opinions about introducing a standard template for substantiating the disability degree decision, based on which the appeal against the disability certificate could be formulated in court, on a scale of 1 to 10 (average scores) 10 9 8 7 6.5 6 5.8 5.1 5 4.7 4 3 2 1 CEPAH members CEPAH secretariat How good is the idea, on a scale from 1-bad to 10-good (average score) How realistic the idea is, on a scale from 1-unrealistic to 10-realistic (average score) Source: Opinion survey Q3B: Practices and experiences of CEPAH members (N = 65) in 24 counties and 2 Bucharest sectors. Institutional survey Q3D: Appeals on the disability degree and disability type certificates (CEPAH Secretariat) in 24 counties and two Bucharest sectors, January-February 2021. (2) The procedure for interpreting the medico- interpreted in a way that is not compliant with Order psychosocial criteria for assigning a disability no. 762/1.992/2007, as shown in Box 12 (iii) in cases degree of transition from the children’s CPC to the adults’ Regarding the medico-psychosocial criteria, the CEPAH, when the parents of children with severe analysis of a sample of court substantiations revealed deficiencies lose their personal assistant status and the following elements that the courts acknowledge other benefits because of the differences between when they rule in favor of petitioners/people with the criteria used by the two commissions; and (iv) disability: (i) medical documents are incomplete when CEPAH decides to assign a disability degree or mistakes exist in the medical documents based solely based on the medical assessment, without on which CEPAH made the decision, as illustrated taking into account other evidence provided by the in Box 11 (ii) medico-psychosocial criteria are applicant, such as the psychosocial information. Chapter 7 I 203 In other words, in general, the courts rule in favor benefits or services (especially personal assistant of persons with disabilities in cases when SECPAH/ services) without considering the social (and not CEPAH are in breach of certain procedural aspects, only medical) circumstances and characteristics of or in connection with granting the right to receive the case. “JUD1: There are certain problems,438 (the person) lives alone, the family is in a different 7.31 town, no home care services are available... all that people see is the disability degree assigned. For us, the revenues of a person are of no relevance, but if they are assigned a “serious” (disability degree) and they go to court, that person will win! On the other hand, the social investigation doesn’t say anything about the context! We have a lot of court cases lost SOLELY because of the social investigation! The social context is not sufficiently taken into account! Some persons were assigned a disability degree by the court solely based on social criteria, on the impossibility of the person to manage themselves by themselves.  The services developed by local town halls are missing. People come for this money, the disability allowance. Nobody at the town hall follows up on how this money is spent. The social investigation does not contain information on the services that a person received, on how they are looked after. …   JUD 2: However, medical criteria are the most important ones, because they are more objective. Social criteria are more subjective and leave room for interpretation. We let the courts decide in such cases In our case, the County Council legal department represents us in court; we just draft reports for those legal advisers. But they don’t know how to defend such cases. And they lose a lot of these cases ... about 10 in a month.” (Focus group CEPAH 2) Excerpt from a final court judgment 438 The discussion in the focus group was about the case of an elderly person, aged 68, with Alzheimer dementia, going through her first assessment for a disability degree. The conclusion of the social investigation was: “It is recommended to have a disability degree assigned for the person and obtain the benefits provided by the law”, and the following information was included: The person lives by herself in a two-room flat on the 8th floor; she can walk; she has difficulties in carrying out instrumental activities; she gets lost frequently; she forgot the water running several times; it happens that she goes shopping and does not remember how to come back; she forgets to take her medicine; she no longer washes herself and is no longer interested in what she looks like; she has only one friend who lives in the same building, but has big health issues as well. Her daughter lives in a different town, and they are in touch by phone. 204 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Excerpt from a final court judgment According to the judges and lawyers assigned... explain. And have better knowledge of interviewed, all documents in a case file must be the content of the Order,439 in order to assign the analyzed in order to substantiate the decision to correct degree; improve themselves or treat the assign/not assign a disability degree. The social case more seriously, analyze the documents in the investigation that reflects a person’s circumstances file more carefully and listen to the families.”440 and their degree of autonomy or their specific needs In contrast, according to CEPAH members, social constitutes information that needs to be combined investigations provide, in general, “poor quality of with medical documents to obtain a complete information;” the psychological tests are often “of medico-psychosocial assessment. In addition, low relevance” and only the medical documents “those who decide on a degree should substantiate and criteria “have a higher degree of objectivity.” every time why that disability degree should be 439 Order no. 762/1.992/2007 on the medico-psychosocial criteria for assigning a disability degree. 440 Interview with a judge. Chapter 7 I 205 7.4.5. No Information or Specialty Support SECPAH and CEPAH practitioners share the at Court Level belief that courts rule in favor of the petitioners/ people with disability for the very fact that they A consequence of the fact that the disability lack medical knowledge and, therefore, “don’t assignment is predominantly based on medical understand the criteria,” besides the fact that they criteria/ assessment (Chapters 4 and 5) is that are “easy to impress.” 7.32 7.33 “In court, the Social Investigation is very ”Years ago, you would consider the disease plus the important for the judge’s judgement. Many times, sequelae of the disease (other conditions). But this the patient goes there in a chair and creates a way of working had to be changed in the recent years different impression for the judge, although one because of the numerous court proceedings. Judges don’t day before the patient was walking. He believes understand the criteria. We had a case that did not fit for the patient, not the commission. The previous the disability degree that the person requested. The court system, with the Higher Commission, composed ordered that we assign a permanent serious disability of practitioners, had a totally different value. You degree. We were told that, should we not do that, we’d fall cannot ask a judge whose medical knowledge under the criminal law. We are not scared by how a judge is not complete to judge on... There should be a assigns a disability degree, but professionally speaking, body of specialists, just like, in case of malpractice, we provide the answers according to the law. But there a medical certification is required, there should are cases when we are asked to return the money... and be a body of experts at county level that we pay out of our pockets. We don’t have a lawyer of the the judge should be able to rely on for expertise. institution. The Directorate [DGASPC] says that SECPAH I witnessed myself how much a judge could belongs to them, to the County Council, and they don’t be impressed, the judge assigned a severe defend us at all. We paid a lawyer ourselves; it’s like we disability degree with personal assistant, although don’t belong to anyone... But then we started to take the the diagnostic is not even among the criteria.” social aspects into consideration more, so that we can (Focus group CEPAH 3) avoid such situations. But then we are obliged to ask for more documents, to make sure we don’t make a mistake.” (Focus group SECPAH 4) Persons with disability expressed diverse to spend time in courts,” and should be “assessed opinions on this topic in their interviews, as shown by the specialists correctly.” These opinions, too, by quotations 7.34-7.37 below. The dominant tend to put more weight on medical criteria and the opinion, however, is that they “should not be forced lack of medical knowledge at the level of the courts. 206 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7.34 7.35 ”Now when we got back to the tribunal, we ”I would say, everything is very biased there [in court]. I mean, I got to this judge who understood all of it don’t believe that... I don’t understand why... I tell you again: why very quickly, and I even asked the lawyer, does a disabled person need to get in front of a judge... what how come he knows, and she told me skills qualify that man for the person with disabilities? It is totally that his wife was a medical practitioner.” out of place, I don’t see the logic of that.” (Interview with a (Interview with the mother of a woman medical practitioner, mother of an 18-years-old boy with Down with disability) syndrome) 7.36 7.37 ”There should be another commission [like the Higher Commission used to “Appeals should not be be] or there should be a physician in court. There can be no physician in court, filed with the court; it’s I know, but an expert... There is no way for a judge to know all those medical not logical, there are no terms, he couldn’t possibly know all the diseases... We asked for counter- competent people there expertise and the court didn’t accept it. It would have been fair to accept it, who can read some medical because the judge only has those documents that the diseased person, the reports.” (Interview with the disabled person brings, he can’t tell the severity of the disease... He couldn’t... mother of a woman with The judge never heard of tuberous sclerosis, just like the doctors on the disability) commission never heard of it, those who were on the commission never heard of it. Also, when we went to the commission, honestly, I tell you, there was no doctor on the commission.” (Interview with the mother of a woman with disability) In response, the interviewed lawyers and judges All interviewed lawyers and judges are aware declare that, at least sometimes, they are challenged of and reject the general opinion among disability to understand the specific language about disability practitioners that a judge should not make used by doctors, psychologists, and social workers. different decisions than the assessment commission The lack of information or specialty support at court members. Regarding this opinion, lawyers and level to help “translate” the medico-psychosocial judges answer that any specialist in the field of law criteria forces judges and lawyers to ask “for help can identify documents that are not complete or from friends who work in the medical field, informal contain mistakes; they can identify interpretations help.” But most often, that happens because there that do not comply with the law, and they can is no substantiation in the file to explain why the understand whether the case was treated seriously disability degree assigned by CEPAH is necessary, or not, whether all documents—not just the medical and the existing explanations included in the ones—were analyzed carefully, or whether the certificates are often merely referring to Order no. person and their representative/family were heard 762/1.992/2007 (see Section 7.4.4). by the commission or not. As for more complex cases, a judicial expertise can be ordered, and the Chapter 7 I 207 case sent to a medical expert or to the Forensic experts” at county and national level to “act as Medicine Institute (IML). Therefore, the judge a buffer” between SECPAH/CEPAH and the must only decide based on evidence, irrespective judiciary and serve as a “verification factor for us, of whether their decision confirms or dismisses as a commission, whether or not we do our work the resolution given by CEPAH in the disability correctly.” In addition, those who were dissatisfied degree certificate. Otherwise, it would mean that with the disability degree assigned to them would “you restrict the persons with disabilities’ access to have the ability to go “for a second opinion without justice. This is not acceptable in any way.”441 having to go to courts.” However, stakeholders agree on two topics. The Going to court should be an option for anyone, first is the fact that there is no support available to the but usually, it is not the only option available to courts in terms of information or specialty support the dissatisfied person. To this end, all modern regarding disabilities and medico-psychosocial systems that provide services to the population, criteria. It is from this point of view that the opinion especially to vulnerable groups such as those with according to which the “previous system, with the disabilities, have developed complaint and appeal Higher Commission, composed of practitioners, redress mechanisms that do not prevent citizens had a totally different value” prevails not only from pursuing their rights and interests by using among practitioners, but also among petitioners. any other route (administrative law proceedings or They all emphasize the need to have a complaint other official litigation mechanisms), at national or and appeal redress mechanism, the “reinstatement local level; nor are they meant to replace the judicial of the Higher Commission,” “another commission,” system or any other form of legal action. “one additional commission” or a “body of 7.38 7.39 “Another issue of the essence is the dissolution of the “JUD1: A person having a disease does not Higher Commission. It is a matter of financial efficiency equal a person having a disability. The Higher as well, and it was also a verification factor for us, as a Commission to be established again. In addition, commission, whether or not we do our work correctly. For there should be a recovery plan for the person, instance, we have about 50 cases per month in the courts, so that we can see what services they received. much more than before, when the Higher Commission was Recovery to be monitored. All these measures in place. Assessments from outside are not objective, we are absolutely necessary. … don’t have any mechanisms to verify them, we even tried JUD2: The Higher Commission—when they to develop some procedures. Quite frequently, we call the were the point of appeal for the certificates, person in for an interview. Our legislation is as if everybody the Commission was like a buffer, while now, is correct, and we have no control mechanism, to control the first instinct is to go to court. In our case, whether what comes from outside is assessed correctly. administrative litigation, things are different, The most frequent cases are dementia cases, where there compared to assessing a person’s capacity to is massive simulation, the persons were doing better than work, where the cases go to the labor court; it ourselves in the MMSE.” (Focus group CEPAH 1) would take away some of the workload.” (Focus group CEPAH 2) 441 Interview with a judge. 208 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 7.40 7.41 “I think it would be very easy to have someone, “The court has no competence to issue a disability at the DGASPC, someone who looks at the degree; actually, the court decides about something that appeal, so that you don’t have to do all those can be real or not... They didn’t take the psycho-social things—I had to make thousands of copies criteria into account; they just took the medical criteria of all the documents. The DGASC people into account. From our complaint that the psycho-social could send these to the IML and sort things criteria were not taken into account, they now take the out between themselves. Why all this time medical criteria into account and they actually check the and all this money wasted. ... Everything is accident. Every doctor would go and feel and see how much so cumbersome, expensive for them and for of the bone is missing, but for the person involved, it’s very us. I don’t even know what to say, there are annoying. They waste people’s time, instead of having a times when we don’t even feel like human collaboration between all ministries, social and educational beings.” (Interview with a woman with as well.” (Interview with a woman with disability, 20 years old) disability, 22 years old) In other words, increasing the number of experts lawyers and magistrates to information resources— on medico-psychosocial criteria remains a constant all information is predominantly technical and need, both regarding the current system or in terms medical, in which case clarifications are needed. of developing a complaint and appeal redress Moreover, many judges need to understand that mechanism at DGASPC level. In both scenarios, the the needs of people with disabilities go beyond number of existing experts is insufficient to ensure their medical diagnosis, and that support to live that dissatisfactions are settled in a fair manner and independently in the community is key to their according to a procedure that is accessible to all quality of life. people with disabilities. The second topic that finds consensus is the 7.4.6. Statistics Regarding the Certificate lack of training on these topics, among both judges Appeal Process and lawyers. “There is no additional training whatsoever [to work with people with disabilities]. This section presents an analysis of the statistics They train themselves. I don’t recall... except for regarding appeals to the disability degree certificate, the training and the activities I had under some as reported by CEPAH secretariats in the institutional projects, but I don’t recall any other professional survey Q3D. Out of the 24 counties and 2 Bucharest training programs/courses in this field.”442 The districts responding to the survey, only 10 counties National Institute for Training and Improvement provided detailed statistics for November 2019 of Lawyers (INPPA) and the National Institute of and November 2020. The aggregated statistics are Magistracy (INM) do not provide any training in provided in Flowchart 6. The analysis focuses on the field of the rights of people with disability. the November 2019 statistics for two reasons. First, The first issue has to do with poor understanding the share of appeals for which a final judgment of how people with disabilities need proceedings to had been issued by February 2021 was 73 percent be adapted when they challenge the certificate. The of the total number of appeals of November 2019, second issue involves the organization of the court but only 39 percent of those of November 2020; the and the fact that the administrative litigation court remaining trials were still ongoing at the time of the is not prepared to work with claimants who have survey. Secondly, the 2020 statistics are most likely disability. The third issue has to do with access of affected by the COVID-19 pandemic. 442 Interview with a lawyer. Chapter 7 I 209 Flowchart 6: Statistics regarding appeals of November 2019, in 10 counties Total appeals Ongoing trials N = 233 N = 62 With final judgment N = 171 Win CJ/CL/CEPAH Win PwD N = 105 N = 66 Not Not Final win CEPAH Appeal Appeal Final win PwD N = 83 N = 10 Yes Yes Final win PwD Final win CEPAH Final win CEPAH Final win PwD N=9 N = 13 N = 32 N = 24 Source: Institutional survey Q3D: Appeals on the disability degree and disability type certificates (CEPAH Secretariat) in 10 counties that provided statistics, January-February 2021. Notes: Final win = favorable final decision; CJ = County Council; CL = Local Council. The existence of an appeal register at the the information about the average duration of the CEPAH secretariat does not ensure that statistics appeal process, provided in Section 7.4.1. Thus, are available for monitoring. The existing appeal out of the appeals filed in November 2019, more registers are not only out of use or not updated than one-quarter (27 percent) were still ongoing in in most of the counties, but even when they are February 2021. The percent goes up to 61 percent used, they do not record relevant data (about when considering appeals filed in November 2020. admitted/rejected appeals, phase of the appeal In other words, the average duration of the process process, results, etc.) to enable the process to be is most likely more than one year, while many of the monitored, ensure continuous learning, and make petitioners are required to renew their certificates the mechanism transparent. Thus, out of the 10 every year. counties that still have and use an appeal register, A small portion of persons with disabilities only 3 provided the requested statistics. The others who appeal against the disability certificate get reported that they do not have this data or provided a favorable ruling. For the appeals registered in partial information. November 2019 that were completed, the share Therefore, the data on which this analysis is of persons with disabilities who got a favorable based is not collected systematically or analyzed ruling in the first court was only 39 percent, and the by the DGASPC/CEPAH. The results of the percentage of those who had a final favorable ruling analysis are rather indicative, since the validity and was even smaller, of only 25 percent (see Flowchart completeness of the data provided by the counties 6). Out of the appeals filed in November 2020 that cannot be confirmed. Out of the 10 counties that were completed, the respective percentage is even provided statistics, 6 CEPAH secretariats reported smaller: 30 percent of petitioners in the first court, a maximum of 10 appeals. Three counties—Cluj, and 16 percent with a final ruling. In all other cases, Harghita, and Satu Mare—reported fewer than namely in the large majority of appeals against the three appeals for the reference months. Therefore, disability certificate, the courts ruled in favor of the three-quarters of the appeals analyzed in this County/Local Council or CEPAH. This result seems section only come from two counties, Suceava and to be in line with the findings of the documentary Arad.443 analysis of court substantiations (Section 7.4.4), The statistics concerning the appeals confirm which show that, in general, the courts rule in favor 443 As we mentioned at the beginning of this chapter, there is no research or data to show whether these counties indeed have much higher rates of appeal compared to the other counties, or they are just more active in registering appeals and are, in reality, typical at national level. 210 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM of people with disabilities only when SECPAH/ favors the person with disabilities (see Flowchart CEPAH is found in breach of procedural aspects, 6). In fact, the interviews with lawyers and judges or in connection with the awarding of the right show that, at least in some counties, the presence to services and benefits established without of DGASPC/County Council legal advisers in court considering the social (rather than just medical) is unpredictable. It is not clear on what grounds or circumstances and characteristics of the case. criteria the DGASPC/County Councils establish The DGASPC/County Council/CEPAH do not which appeal cases show up in court, or for which file for an appeal in all cases in which the first court cases they file an appeal. Greater clarity in this respect may be helpful for the courts. ”... because the disease is not contained in the classification code, [the son] was not 7.42 assigned with a severe degree, but with a serious degree. […] You see, we filed an appeal twice. With the second appeal, we started the appeal somewhere in February last year, 2020, and it ended no earlier than September. They [DGASPC/CEPAH] did not file for an appeal, because they realized that, last time, we also won in the appeal phase. So on the second year, when they saw it was the same thing, we asked for court expenses. On the first year, we didn’t ask for anything; on the second year we asked for court expenses too, so they thought, they [DGASPC/CEPAH] wouldn’t have all that money that they would be required to pay back. Besides the difference in the disability degree, because they had to award that too.” (Interview with the mother of a woman with disability) People with disabilities rarely file for an appeal the trial. Several interviewees, however, discussed if they lose in the first court (see Flowchart 6). Only the “cumbersome procedures,” especially those about 20 percent of those who did not receive a pertaining to a reassessment at the Forensic Medicine favorable ruling in the first court file an appeal and Institute (IML). People with disabilities consider the go to the higher court. The reasons communicated only advantage of the IML reassessment occurs if in the interviews are varied. Some give up because the physician at the IML is also a member of the they are discouraged; they do not trust that “the CEPAH, which could help the person in a future system will ever say that we are right;” others cite assessment for certificate renewal, as the quote 7.43 the financial costs, time, and energy required, which below shows. are already deemed high from the first phase of “So, we did file for appeal, definitely... It was a continuous fight. Yes, yes. That’s how it 7.43 was. ... They sent us to IML, and there, she got reassessed, with all aspects: neurological, psychological, psychiatric, and they gave the diagnosis and everything that was necessary, the IML, and then based on that... I was there with her, she was hospitalized for one day, they assessed her. It was terrible. At first, when we got to IML, the things are so... weird... A nurse takes the file and reviews it, and you wait for one or two or three hours until it’s your turn to be assessed by a specialist doctor, who didn’t want to... so that doctor, based on our medical reports from specialists, she could have given her consent, but she didn’t want to. She preferred to send us to their own specialists at the IML for the reassessment. To be honest, it was ok with me, because I felt it was the fairest thing to do, and the thing is that the doctor who saw her there... at the IML, she was also a member of the assessment commission... Afterwards, because we were rescheduled in 2 weeks... This was a long one. So we were rescheduled to go there in 2 weeks...and she was there, sitting on the commission, when they gave the verdict. I was happy, in the end it was as it should have been... because that’s the reality, there is nothing to hide. I had a hemorrhage while I was pregnant, and part of her cerebellum did not develop. ...She is not... If you see her, apparently, she doesn’t look like she has any retard; just that, everything that is related to those functions for which that part of the cerebellum is in charge, with the fine motility functions, hands, speech, walking... Everything that has to do with fine motility functions is affected. We were in aggressive recovery up to around 14 years of age, and then we didn’t stick to that pace. We were in Hungary, in Budapest for 5 years. We did everything we could...” (Interview with the mother of a woman with disability) Chapter 7 I 211 All the other experiences with the IML only serve being purely medical. So, with the switch to the new to highlight how cumbersome and impersonal the paradigm of assessments from the point of view of process was. In addition, from the point of view of the ICF, such reassessment could cause significant the ICF and the UNCRPD, the type of assessment discrepancies with the assessment of the SECPAH/ performed by the IML has the great disadvantage of CEPAH based on ICF principles. 7.5. Profile of those who appeal the disability certificate and win Only one county provided full data for analyzing the the data available at the CEPAH secretariat, for the profile of people who appeal the disability certificate appeals existing in November 2020. The complete and win in court.444 This section provides a case study table is available in Annex 7. of petitioners in the county of Suceava, according to Figure 48: Persons who filed and won appeals against the disability certificate, by age, November 2020, case study for Suceava county (% of total) 27.5 20.3 17.6 17.1 17.1 14.4 15.7 13.7 10.2 11.2 9.8 8.6 7.8 3.9 3.9 1.1 18-20 y.o. 21-26 y.o. 27-34 y.o. 35-44 y.o. 45-54 y.o. 55-64 y.o. 65-74 y.o. 75+ y.o. Total appeals against the disability certificate, out of which: Appeals with final judgment won by the PwD petitioners Source: Institutional survey Q3D: Appeals against the disability certificates (CEPAH Secretariat), January-February 2021 (N=187 total appeals filed, out of which 51 won by the person with disabilities petitioner). Note: y.o. = years old. Adults who file appeals against the disability of people who filed an appeal and people who certificate are men and women of all ages, won through a final ruling of the court shows the predominantly from rural areas (65 percent). The categories with a disproportionally high chance of majority are people classified with a severe deficiency winning (see data in Annex 7). At least in Suceava, degree (especially “severe with personal assistant”), the categories that have significantly higher chances with the following types of disability: physical (46 of winning in court include young people 18–20 percent), mental (15 percent), or somatic (14 percent). years of age and adults 35–54 years of age (see Figure Almost all have certificates that are valid for one year 48); they are equally men and women, from rural or (96 percent) and live with their family (68 percent). urban areas, living with family; people with a somatic Regarding lawyer assistance, the persons who appeal disability who have a permanent certificate; people against the disability certificate are almost equally under interdiction and having a family member as a spread in categories of persons with a lawyer of guardian; people with at most 8 grades of education, their choice (46 percent) and persons who represent and people who represent themselves in court with no themselves (51 percent), while petitioners who assistance from a lawyer. On the other hand, people received free lawyer assistance make up less than 4 aged 55+ represented by chosen counsel in court percent of the total. have significantly higher chances of not winning the The comparative analysis between the profile appeal against the disability certificate. 444 Institutional survey Q3D: Appeals against the disability degree and disability type certificates (CEPAH Secretariat) in 24 counties and two Bucharest sectors, January-February 2021. 212 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Conclusions of Chapter 7 Providing accessible and fair information is a key requirement for any complaint and appeal redress mechanism, without which increased access to justice for persons with disabilities cannot be achieved. However, not all counties currently have 1 detailed information about how to make an appeal that is accessible to all people with disabilities. Thus, Article 9 of the UNCRPD is not implemented equally across Romania. The appeal process is largely unpredictable, and the information provided at the DGASPC level does not, in most cases, help improve predictability, although some CEPAHs developed good practices for providing information, advice, and support. Therefore, relatives, friends, neighbors, social networks, and NGOs are the main sources of information and support for the certificate appeal process. The two 2 measures for improving access to and equity of the process, which were tested by survey, are deemed by system practitioners to be somewhat “good ideas” but less realistic. A change to the law without increasing the available institutional resources would only increase stress and noncompliance. Drafting guidelines that speak specifically to how to appeal the disability certificate, to be distributed to all people with disabilities, could work if the guidelines were developed nationally and provided to all DGASPCs in the country. Romania’s disability certificate appeal mechanism does not include a continuous learning dimension. At present, the institutions involved in disability assessment do not identify the key lessons or take steps to improve the mechanisms and prevent dissatisfaction. Since 2017, no county covered in the research conducted a rigorous 3 review of the reasons for appeal. In terms of opinions, the three most frequent sources of dissatisfaction regarding the disability certificate concern the assessment regarding: (i) the disability degree; (ii) the valid term of the certificate; and (iii) a lowering of the degree from one assessment to another or in the case of minors transitioning to adulthood. The mechanism for appealing the disability certificate in Romania does not follow the transparency principle that should underpin any good complaint and appeal redress mechanism.445 Under the terms of the new legal framework regarding the procedure for appealing the disability certificate, established by EGO no. 51/2017, the secretariat of the Higher Commission for Assessment of Adults with Disabilities 4 and the CEPAH secretariats no longer receive or register appeals against the certificates. In addition, they do not collect data based on which statistics, case studies, or more detailed information about how certain cases are dealt with could be published, which is important for proving the mechanism’s legitimacy and improving confidence about its efficiency. 445 UNDP (2017: 2). Chapter 7 I 213 The data collected for this report show that, contrary to the requirements of the law, administrative litigation departments currently do not process appeals against a disability certificate with urgency. Free public legal assistance is available, but there is no awareness of it and it is very rarely used. The process of appealing the disability certificate is characterized by a lack of homogeneous procedures regarding the treatment of evidence at the level of courts, concerning aspects such as admissibility of the objection on grounds of late filing, admissibility of testimonial evidence or evidence by independent experts, differences in whether the court 5 session is declared non-public, availability of support services during the trial, short periods between the court hearings, and court substantiations. Overall, the judicial procedures are only slightly adapted to the specific needs of a person with disabilities, as per UNCRPD (Art. 13). Persons with disability and NGOs express their dissatisfaction or even drop the appeal because of the cumbersome procedure and the costs it entails. Therefore, the new legislative framework (EGO no. 51/2017) did not achieve its declared purpose to facilitate access to justice for people who are not satisfied with the disability degree assigned to them, and it does not support a correct, informed, respectful appeal process. The two main elements that the courts acknowledge when they rule in favor of persons with disabilities petitioners are (i) no substantiation of the CEPAH decision given in the disability certificate; and (ii) aspects related to the procedure or to the interpretation of Order no. 762/1.992/2007 regarding the medico-psychosocial criteria for assigning a disability degree. In general, the courts rule in favor of persons with disabilities in cases when SECPAH/CEPAH are in breach of certain procedural aspects, or in connection with granting the right to receive benefits or 6 services (especially personal assistant) without considering the social (not only medical) circumstances and characteristics of the case. Introducing a standard template of substantiation of the classification decision, to be filled in by the CEPAH, could be realistically used in some counties, but is difficult or impossible to achieve in most, given that CEPAH members have 5 minutes per case, on average, to reach a decision. Therefore, to make the appeal process more efficient, the process of disability determination should first be made more efficient. Given the resources and institutional arrangements in place at CEPAH level, it does not seem possible to substantiate the disability determination in a way that could serve as an input for the courts. Currently, court judgments regarding appeals against disability certificates are highly subjective, for two main reasons, on which all stakeholders involved in the appeal process agree. First, there is no support available to the courts in terms of 7 information or specialty support regarding disabilities and medico-psychosocial criteria. Second, there is a lack of training on these topics, among both judges and lawyers. However, the appeal process cannot be improved by changes made only in the administrative litigation courts; major changes are required at the level of the DGASPC and the ANDPDCA as well. Thus, all stakeholders highlight the need to have and timely information about the appeal procedure a complaint and appeal redress mechanism to act to drawing up a detailed substantiation of the as a “verification factor” for the SECPAH/CEPAH degree determination, to providing support for and an alternative route for people who are not preparing the appeal petition and counseling for satisfied with the disability degree assigned to the dissatisfied person and their family. Developing them. The DGASPC could play a more active part an actual complaint and appeal redress mechanism in this process, from providing correct, complete, that respects the principles of accessibility, equity, 214 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM predictability, transparency, and continuous data in their file and interactions with the person learning could be a way to support those who and their family. This new redress mechanism disagree with the assigned disability degree and should not be a return to the pre-2017 situation, reduce the number of appeals filed in court. And with a sole commission at the national level for those people who would still file in court, the working with insufficient resources. Furthermore, DGASPC, through a dedicated department, could the new mechanism should not prevent citizens provide guidance services and refer people to from pursuing their rights and interests using any free legal assistance, maybe under a collaboration other route (administrative law proceedings or protocol with the Bar Association and with NGOs, other official litigation mechanisms), at the national and prepare for the courts a list of necessary or local level, neither are they meant to replace the procedural adaptations for each person, based on judicial system or any other form of legal action. Chapter 7 I 215 216 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 8. Young people with disabilities: The transition to adult life446 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE The National Authority for the Rights of Persons on the United Nations Convention on the Rights of with Disabilities, Children and Adoption the Child, ratified by Law no. 18/1990 republished, (ANDPDCA) is the institution responsible for and also on the United Nations Convention on the making policy in the field of protection of persons Rights of Persons with Disabilities (UNCRPD), with disabilities (children and adults). In recent ratified by Law no. 221/2010. years, children with disabilities have become a main The main objective of this chapter is to present target group for the reform of the special protection the main differences between the disability degree system, with substantial changes being promoted in evaluation processes for children and adults in the disability assessment process and methodology order to identify the bottlenecks in the transition for children. The legislation regarding the from the child protection system to the protection determination of the disability degree for children system for adults with disabilities. The chapter and young people is based on the International also explores the access to services of people with Classification of Functioning, Disability and Health: disabilities as they transition from childhood to Children and Youth Version (ICF–CY),447 adopted adulthood, focusing on the challenges currently by the World Health Organization (WHO) in 2007, faced by young people with disabilities. 446 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 447 The International Classification of Functioning, Disability and Health: children and youth version (ICF-CY) is a WHO-approved classification “derived” from the International Classification of Functioning, Disability and Health (ICF). https://www.who.int/ docs/default-source/classification/icf/whoficresolution2012icfcy.pdf?sfvrsn=2c8e5e9b_4 Chapter 8 I 217 Legislation governing the disability determination in children and youth Disability in children is no longer assessed on the basis of the medical model, but on the basis of the social and human rights model, and the fundamental principles of the ICF. The biopsychosocial vision of the ICF (adopted by WHO in 2001) was translated into legislation in 2002, redesigning the comprehensive assessment of children and the whole case management process, and introducing psychosocial criteria, which were inspired by the Activities and Participation component. Subsequently, the psychosocial criteria have been revised twice: in 2012 by aligning with the ICF–CY, and in 2016 by introducing environmental factors. Unlike the assessment process for adults, the assessment process for children is based on the key principles of the ICF. The main regulations concerning the determination of the degree of disability for children are: • GD no. 502/2017 on the organization and functioning of the Child Protection Commission • Order no. 1306/1883/2016 approving the biopsychosocial criteria for classifying children with disabilities into a deficiency degree and the procedures for their application, with subsequent amendments and additions • Joint Order of the Minister of Labor, Family, Social Protection and the Elderly, the Minister of Health, and the Minister of National Education and Scientific Research no. 1985/1305/5805/2016 on the approval of the methodology for integrated assessment and intervention for the classification of children with disabilities into a deficiency degree, for school and the professional orientation of children with special educational needs, and for the habilitation and rehabilitation of children with disabilities and/or special educational needs. 8.1. Preparing for the transition to adult life and gathering the file Romania’s Civil Code considers a child to be an environmental barriers are often the most significant adult once he or she turns 18 years old. Although challenges young people with disabilities face as legally the change of status takes place on the they transition to adulthood. day the person turns 18, in reality, the transition Frequently, within communities, SPASs do to adulthood involves a new life cycle marked by not adequately provide young people with easily major changes, such as leaving school or home accessible and comprehensive information about and becoming independent.448 Young people with the transition to adulthood, nor are there legislative disabilities also age out of the disability degree requirements in this regard. For 16–17-year-olds classification based on criteria used for children and with disabilities living with their family and for become subject to classification using the criteria for their parents, only 21 percent of the sampled SPASs adults. Current data, including that collected for this provide special information on the transition to report, indicates that the transition to adulthood for adult life (see Figure 49),449 and most of them are young people with disabilities involves a number of in large cities (with more than 20,000 inhabitants). challenges. The disability determination process is By contrast, small towns and rural communities substantially different for children than for adults. almost completely lack this type of information.450 While there are significant personal challenges, 448 Art. 83 of Order 1985/1305/5805/2016, para. 2, let. b mentions “transition to adult life”. 449 Out of the sample of 71 SPASs, 61 percent report that they do not provide special information to young people with disabilities in the care of the family about the transition to adult life, 7 percent say that they do not have young people aged 16–17 with disabilities in the care of the family, living in their locality, and 11 percent did not answer the question. 450 Out of the 18 SPASs in the large cities in the sample, 10 SPASs (or 55 percent) report that they provide young people with disabilities in the care of their families with some special type of information about transition to adult life. By contrast, only 5 SPASs out of 53 in small towns and localities (or 10 percent) provide this type of service. 218 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 49: Informing young people with disabilities about the transition to adult life (%) DGASPC made available to SECC all human resources, materials and means necessary to communicate with children/young 6 19 64 11 people, depending on the type of disability (*) SECC - information for young people with disabilities, 8 6 25 61 16-26-year-olds, living in the special protection system SECC - information for young 16-17-year-olds with disabilities 58 8 6 28 living with their family SECC - information for the parents of young with disabilities 8 3 25 64 SPAS, within community - information for young 16-17-year- olds with disabilities living with their family, and for their 18 61 21 parents (**) 0 20 40 60 80 100 Non-response No Yes, partially Yes, completely Source: SPAS survey with responses from 26 counties corresponding to 71 SPAS, January-February 2021. Institutional study Q2A: Factual data and indicators on the activity of the service for comprehensive assessment of adults with disabilities (SECPAH) and Children (SECC, N = 36) in 32 counties and 4 districts of Bucharest, January-February 2021. Notes: The age of the 16-17-year-olds is statistically assessed until reaching the age of 18. (*) In accordance with Order no. 1985/1305/5805/2016, Art. 51 para. (2). (**) The non-response category includes 11 percent of the sampled SPAS who did not answer the question and 7 percent who stated that there are no 16-17-year-olds with disabilities in their locality. Order no. 1985/1305/5805/2016 includes COVID-19 pandemic, almost two-thirds of SECC provisions for informing parents and children chiefs reported in the Q2A questionnaires that they about the transition to adult life, as part of the were also challenged to carry out these activities comprehensive assessment carried out by the Service because the DGASPC provided insufficient human for the Comprehensive Assessment for Children and material resources to communicate with (SECC), starting from the age of 16.451 In terms of children, depending on the type of disability (see implementing this provision, Figure 49 shows that Figure 49). not all young people with disabilities in the country Information about the transition to adult life receive such information. Among the 36 counties is very unevenly distributed across the country, that participated in the institutional survey Q2A, general in nature, and does not really support young only about 60 percent of SECCs provide this type people with disabilities or their families. According of information to all young people with disabilities to interviews, many people with disabilities have and their parents, in a typical month, while about 25 simply come across information about the need percent of SECCs provide such a service to just some to apply for a disability certificate as an adult, or young people, regardless of whether they live with found out when informed by phone that benefit their family or live in the special protection system. payments have been stopped.452 Thus, as part of the Also, in two counties, SECC chiefs said they do not information activities:453 implement this provision. Moreover, in the context • For almost all young people with disabilities, of the COVID-19 pandemic, the share of SECCs that the SECC informs parents/representatives that have provided adult life preparation for all young when the child turns 18, they will have to apply people with disabilities aged 16–17 decreased, for classification in a deficiency degree and type going from around 60 percent to around 50 percent to another service (SECPAH/CEPAH), which in 2020. However, both before and during the 451 Also, the habilitation/rehabilitation plan is changed to the habilitation, rehabilitation and transition to adulthood program for children with disabilities. Order no. 1985/1305/5805/2016, Art. 55 (4), Art. 65 (6) and Annex 3. 452 Prior to the approval of the legislative package in December 2016, this information was not mandatory. 453 The data in the following paragraphs were reported by the SECC chiefs of 28 counties and 3 districts of Bucharest, for 2019 and 2020. Institutional study Q2A: Factual data and indicators on the activity of the service for comprehensive assessment of adults with disabilities (SECPAH) and children (SECC), January–February 2021. Chapter 8 I 219 uses different criteria to evaluate applicants and the file, the quality of documents in it, or the low provide services. Among the 31 SECCs studied, level of information and anticipatory preparation 19 SECCs inform parents/representatives of all of children and families do not have a significant 16–17-year-olds assessed annually. However, negative affect on children with disabilities’ there are also counties where only parents/ transition to adult life, with averages of a maximum representatives of young people with certain of 5.3 on a scale of 1 (none) to 10 (total). The process characteristics receive this information. As a from diagnosis to obtaining the certificate are well- result, in some counties, the share of young outlined in the legislation, including the number of people with informed parents/representatives visits/trips the child and his/her family must make drops; for example, to 85 percent (in AG), 73 to the SPAS/SECC to receive the degree of disability percent (in BV), 46 percent (in VL), or even 6 and the number of documents required, both of percent (in SV) of all 16–17-year-olds assessed which are kept to a minimum, with the emphasis by the SECC over a year. on inter-institutional collaboration rather than • Similarly, the SECC informs not only the increasing/duplicating family efforts. In addition, parents/representatives, but also the majority of facilities are provided for immobilized children and 16–17-year-olds with disabilities, that when they those from low-income families, so that children turn 18 they will have to apply to the service for can benefit from the comprehensive assessment adults with disabilities (SECPAH/CEPAH) for that ultimately secures their rights under the law. classification, which uses different criteria for Recent changes to regulations and procedures evaluation and provision of services. The share in the context of the COVID-19 pandemic have of informed young people also varies, between simplified the process of obtaining certification for a minimum of around 5 percent (in SV) and a children. At the beginning of 2021, in the opinion maximum of 100 percent (in 20 counties). surveys, specialists in most counties indicated For young people with disabilities, transitioning that for children, one trip/visit to the DGASPC is to the adult category means a change in their currently enough to obtain the certificate, as shown disability classification file, as well as the need to in quote 8.1 (which is also consistent with the obtain medical documents from a practitioner opinions in Figure 50). However, in other counties, (instead of a pediatrician). However, according the situation remained unchanged from 2019, as to specialists from SECC, the Child Protection described by quotes 8.2. Therefore, implementation Commission (CPC), SECPAH, and CEPAH, these of the new regulations is uneven across the country; issues do not negatively affect continuity of services the application process has been simplified but not or children’s lives when they turn 18. As shown for all children. in Figure 50, other issues, such as the transfer of “Information on the documents required for the file can be found on the DGASPC 8.1 website and at the town hall of residence which is responsible for supporting the family in completing the file, as well as the contact number for the DGASPC where they can call daily between 7.30am and 4pm for information on completing the file. On the date of submission of the file (to DGASPC/SECC), the comprehensive assessment of the child also takes place, on the same day. Appearance before the CPC only takes place in special cases, in case of change of degree, if the applicant wishes to express his/her opinion or dissatisfaction. If the file is incomplete, from March 2020, the applicant can send completed documents by e-mail to the SECC. Evaluations take place online and only the new cases (the applicants who apply for the first time to obtain the certificate) come in person for the file submission. Classification decisions are sent by mail for cases of severe, moderate and mild disability”. (SECC specialist, quoted from a Q2B questionnaire) 220 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 50: Issues that negatively affect continuity of services and life for children with disabilities and their families, according to practitioners 10.0 9.0 8.0 7.0 6.0 5.3 5.1 5.0 4.9 4.8 4.7 4.7 4.5 4.6 4.1 4.0 3.9 4.0 3.7 3.5 3.7 3.6 2.9 3.0 3.1 3.0 2.3 2.2 2.0 1.0 a. Transfer from a b. Transfer of the file c. Quality of d. Low level of e. Need to obtain f. An applicant must do pediatrician to a from SECC to SECPAH documents in the file information and additional documents at least three visits to specialized doctor for sent from SECC to anticipatory preparation for the first assessment DGASPC for: registering adults SECPAH of children and families as adult as compared the file interview with the last with SECPAH/SECC, assessment as child (*) meet CEPAH/CPC and receiving the certificate? Children up to 18 years old Disability assessment - SECC (**) Children up to 18 years old Disability determination - CPC Adults 18 years old or over Disability assessment - SECPAH Adults 18 years old or over Disability assessment - CEPAH Sources: (1) Opinion survey Q2B: Practices and experiences of specialists working within the service for comprehensive assessment of adults with disabilities (SECPAH, N=185) and children (SECC, N=165), in 39 counties and 6 districts of Bucharest, January–February 2021; (2) Opinion survey Q3B: Practices and experiences of the members of the commission for assessing adults with disabilities (CEPAH, N=46) and the Child Protection Commission (CPC, N=26) in 24 counties and 2 districts of Bucharest, January–February 2021. Note: The chart shows the average values on a scale from 1 (none) to 10 (total) for each aspect and category of specialists. (*) The requirements for the preparation of the file are not harmonized, adults are required in addition to children: social inquiry from SPAS, psychological assessment—document valid for only 3 months, income certificate issued by the Mayor’s Office or student certificate. (**) Statement extracted from the National stage analysis of the habilitation/rehabilitation of the person with autism spectrum disorders (child and adult), in order to develop the 2020–2024 National Autism Plan (SGG, Oct. 2019). “The guardian presents himself with the medical documentation to request information 8.2 on disability classification. Once this information is obtained, he goes to SPAS and applies for a social inquiry. Then he goes to the doctors in order to get all the paperwork that he needs. With these documents, he goes to the DGASPC office to submit the file”… ”Then, it is necessary to physically verify the documents and, in particular, to provide additional information if the documents are drawn up incorrectly or are incomplete. The child’s presence at the SECC office is necessary and more useful to SECC specialists in the evaluation than the online evaluation in the child’s home environment.” … ”And then not all guardians have Internet access. The presence of the child and his/her parents/representative at the SECC for evaluation is required. Then, they have to come and pick up the certificate and submit it to the facilities department, in order to get the benefits.” (SECC specialists, quotes from Q2B questionnaires) According to interviews with 18–26-year- their families, and information about the process is olds with disabilities and their representatives, often unclear. More details on the difficulties that preparing a new assessment file is considered time- young people face in obtaining medical documents consuming and inefficient, especially when they and preparing and registering the file, as well as the have first applied for disability classification as barriers to accessing disability classification, can be adults. In addition, they pointed out that the process found in Chapter 3. is stressful for young people with disabilities and Chapter 8 I 221 8.2. The comprehensive assessment of young people with disabilities compared to that for adults There is a lack of disaggregated data by age adults. The comprehensive assessment of children/ group on disability in Romania, especially for the youth is carried out in two stages. The first is 18–26 age group, as described in Chapter 9. This a multidisciplinary assessment carried out by contributes to a misperception that young people physicians and psychologists, social workers, and with disabilities transitioning to adult life constitute education specialists from outside the SECC. At a “very small group.”454 As a result, policymakers this stage, parents/representatives can choose the and specialists are more willing to put aside the professionals they consider best for their child, transition from childhood to adulthood, especially which is the child’s fundamental right. The second as the existing legislation only covers the 16–17 evaluation is carried out by SECC specialists, who age group455 at SECC level. Furthermore, in the apply the biopsychosocial criteria and formulate the institutional survey Q2A,456 only one SECC chief proposal for classification and recommendations, reported having a specific approved procedure and by the CPC, which determines the degree regarding the transitional activities carried out with of disability. Generally, the SECC team sees young people and their parents. The other SECCs the applicant in person when conducting the in the sample, as well as the SECPAHs, have not assessment. developed any procedure in this respect. Although the process is generally similar for During a year,457 a total of about 3,800 young children and adults, the assessments can differ people aged 16–17 with disabilities are registered significantly in terms of how the degree and type with the SECC in the 31 counties participating of disability are achieved. There are two types of in the Q2A institutional study alone. Therefore, biopsychosocial criteria for children: medical/ across all 47 SECCs in the country, the total number medical-psychological and social/psychosocial. of young people with disabilities aged 16–17 Based on ICF principles, medical criteria are most likely exceeds 5,500 yearly. The differences used to assess the functional impairments and between counties are prominent, ranging from corresponding qualifier, and psychosocial criteria around 30 to over 300 young people per county. are used to assess the child’s activity limitation, Among these youth, girls account for less than 45 participation restrictions, and the corresponding percent, on average, with significant variations qualifier. In contrast, the comprehensive assessment both from county to county and year to year. The of adults is predominantly based on medical criteria, majority of these youth live with their families—84 with important weight given to the psychological percent on average—while 16 percent are separated assessment in the case of some conditions, while from their families and come from the special social assessment is used to determine the need for protection system. Here, too, there are considerable a personal assistant, but is rarely used to determine discrepancies between counties. The share of the degree of disability. As a result, assessment 16–17-year-olds with disabilities living with family outcomes can be substantially different for adults ranges at county level from around 70 percent to compared to children, so that the same person, over 95 percent of the total. upon turning 18, can obtain very different sets of The disability assessment for children/youth services, which indicates a lack of continuity in the has common features with the assessment for provision of services and protection measures. 454 Moreover, Figure 2c in Section 1.3 also shows that in national statistics, the 18–19 age group is disproportionately small compared to all other age groups (e.g. about half of the 15–17 age group and less than 40 percent of the 20–24 age group). 455 The age of 16–17-year-olds is statistically assessed until reaching the age of 18. 456 Institutional study Q2A: Factual data and indicators on the activity of the service for comprehensive assessment of adults with disabilities (SECPAH) and children (SECC) in 32 counties and 4 districts of Bucharest, January–February 2021. 457 The data in this paragraph were reported by the SECC managers of 28 counties and 3 districts of Bucharest, for 2019 and 2020. Institutional study Q2A: Factual data and indicators on the activity of the service for comprehensive assessment of adults with disabilities (SECPAH) and Children (SECC), January–February 2021. 222 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Flowchart 7: Assessment of the degree of disability, children and adults Children Adults Criteria used for evaluation The biopsychosocial Six mandatory areas of vision: the introduction evaluation, but the decision of psychosocial criteria is made almost entirely based in 2012, by aligning on medical criteria. with ICF–CY, and in 2016, by introducing the environmental factors. The first is a multidisciplinary evaluation performed by Yes Yes health/social professionals, and the second stage takes place within the service for comprehensive assessment (SECC/SECPAH) at DGASPC level. Face-to-face evaluation. Is the applicant seen by the Yes* Yes* evaluation committee (SECC and SECPAH)? Medical criteria. Are the medical criteria and the results Yes, but in some cases Yes, the same degree of of the medical assessment generally the same for adults different degrees disability is determined for and children? of disability can be the same disease, because determined for the same social factors are not taken disease, if the social factorsinto account in determining are different. the degree. Medical vs. social (functional) Both medical and The comprehensive psychosocial (functional) assessment includes both factors are considered medical and social factors, and used in the but medical criteria play recommendation. an essential role in the determination. ICF. The social and psychosocial criteria are correlated Yes. Social and psychosocial Medical factors define the with the ICF/ICF–CY codes so that specialists have a criteria are correlated with assessment. ICF principles are common understanding of them. the ICF–CY codes, including not used. environmental and attitudinal barriers obtained through social assessment. Standardization. A standardized assessment form is used Yes No for non-medical examination. Decision algorithm. A simple algorithm that leaves no Yes Yes room for interpretation. Two people with a particular condition could get Yes, because functional No different degrees of disability. factors could play a role. ICF training. ICF training is available for all specialists. Yes No Decision. How is the disability degree assessment Joint decision of doctors In theory, joint decision, recommendation made? and other specialists. but the medical element is essential. Case management. Do ICF principles govern case Yes No management? Services plan. The comprehensive assessment is carried Yes, almost always (PAR) Yes, in some cases (PIRIS is out not only to determine the degree of disability, but drafted always, but PIS in also to plan the benefits. some cases only)** Source: Authors’ compilation. Note: * During the COVID-19 pandemic, interactions between applicants and assessors decreased significantly, as a result of measures to prevent and combat the effects of the pandemic. ** See Chapter 6. Chapter 8 I 223 Medical assessments for adults and children adults are still unclear and non-standardized, are based on similar criteria. They use roughly the which leaves room for interpretation that can same list of health conditions but are structured lead to discretionary decisions. and applied differently, leading to differences in • Functional assessment of adults is not based assessment. The analysis of the medical criteria on standardized procedures or unified tools.459 for adults, detailed in Chapter 4, shows they are Unlike the assessment process for adults, generally robust in terms of medical classifications, assessment of disability degree in children but the degree of disability is inconsistently and is based on well-articulated standardized questionably defined. The situation is similar in tools. In assessing children, the standardized terms of medical criteria for assessing disability procedure and tools take into account medical in children. These, together with the medical- and functional aspects, in line with the ICF–CY. psychosocial criteria, are endorsed by the specialist The assessment is based on documentation from committees of the Ministry of Health and are the first (multidisciplinary) stage, including correlated and have the same measurement values the results of laboratory tests and paraclinical as the criteria for adults, in cases of common medical investigations, as well as interviews with conditions. For both adults and children/young children and their parents/legal guardians. The people, additional paraclinical investigations or forms are standardized and have the period of medical/psychological reports may be requested validity provided by the law. during the comprehensive assessment phase, if inconsistencies are found between the documents • Children with the same medical diagnosis on file or during the interview. as adults may be assigned a different degree A detailed summary of the assessment of disability than adults. The disease does differences in the degree of disability between not constitute functional impairment, nor children and adults is presented in Flowchart 7. The disability, with a few exceptions established by main differences are summarized as follows: medical committees (such as diabetes or Down syndrome). Children are assessed holistically • Unlike the assessments for adults, social and and individually; therefore, children with the psychosocial criteria for children are designed same medical diagnosis may have different with ICF–CY principles in mind.458 The functional degrees of disability. At the same time, the same part of the assessment looks at barriers related child may have a different degree of disability to environmental factors and attitudes, depending on progress or regression. Non- identified through the social assessment. The recoverable cases are not recognized in children, assessment uses scores to consider functional because children have a greater potential for factors. The psychosocial criteria assess the recovery/rehabilitation than adults. Only in the child’s performance—as defined by the ICF— case of palliative care is a disability certificate highlighting the child’s ability to cope and valid for up to 18 years granted; the typical interact with his/her environment. period of validity for children/young people is • Although the medical criteria relate to roughly 1–2 years. the same list of conditions, in the case of children, SECPAH specialists reported, to a greater extent clear rules of application are established, so than SECC specialists, that disability types are not that the absence of a condition on the list is clearly defined and there are issues assessing and not a reason for non-inclusion if, by its impact reporting them to the ANDPDCA: “As the types of on the body, it falls within the deficiencies/ disability are not clearly defined, they are interpreted functional impairments described in the criteria and recorded according to each specialist’s . In contrast, the application rules used to assess 458 It is important to stress that the assessment of the criteria used for children is beyond the scope of this report. The analysis presented here assumes that the assessment of children uses ICF principles based on the Ministry’s expert assessment. 459 This result of the research team (see also chapter 4) is also supported by the SECPAH specialists who, in the Q2B survey, agreed with the statement “Although there is a template for completing the comprehensive assessment report, as well as guidelines to ensure a uniform way of working at national level, there are currently no assessment tools that can be used across the six areas of assessment: social, medical, psychological, vocational, educational, skills assessment and level of social integration” to an extent equal to an average score of 6.7, on a scale of 1(none) to 10 (total). Opinion survey Q2B: Practices and experiences of specialists working within the service for comprehensive assessment of adults with disabilities (SECPAH, N=186), in 39 counties and 6 districts of Bucharest, January–February 2021. 224 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM understanding, which is why correct reporting, as limitation and participation restrictions are rated requested by the ANDPDCA, is not possible.”460 In higher than the functional impairment, the degree fact, ANPDCA461 made the definitions of disability of disability will be higher than if it were assessed types available to SECCs since the training on the basis of functional impairment alone; i.e., sessions (SECC and CPC) in 2017.462 Therefore, the by exclusively applying medical criteria. The methodology for determining the type of disability only weakness of the algorithm, SECC specialists is more clearly defined for children than adults. But highlighted in the Q2B survey, refers to the fact it requires some additions, SECC specialists point that “although there is the grid with ICF items for out, such as coding for rare diseases, neurological determining the activity limitations, the scoring impairment without motor impairment, and all of these items with a qualifier between 1 and 4 is conditions associated with mental retardation that rather subjective, because there is no specific tool to fall into the type of associated disability; it is not determine the setting of these qualifiers.”463 possible to tell which impairment is more severe. In conclusion, for children, the comprehensive To formulate the disability proposal, ICF assessment is aligned with the ICF and follows items are associated with qualifiers according to a modern approach to disability assessment, an algorithm that was revised in 2016, based on although it could benefit from some improvements. more than 15 years of experience, by ANDPDCA In contrast, for adults, the classification to a degree and SECC specialists. It is important to note that of disability has remained predominantly medical, the algorithm allows practitioners to determine although the assessment is based on medical- the degree of disability based on the psychosocial psychosocial criteria, a result confirmed by SECPAH aspects of the child’s life. Thus, if the child’s activity and SECC specialists (see also Chapter 4). 464 8.3. Determining disability in young people The process of determining disability is different severe degree of disability in most of the counties for children than for adults. A comparison of the studied (15 out of 24 CEPAHs, and 5 out of 6 CPCs). results of the CEPAH and CPC determinations for In contrast, differences in determination some case examples are shown in Figure 51. Thus, between CEPAHs and CPCs can be substantial according to the commissions presidents in the for Type I diabetes mellitus cases, where a severe institutional study Q3A, for cases of children where degree is usually given for children, while the the CPC assesses complete functional impairment/ majority of CEPAH presidents state that they are deficiency by applying medical criteria—i.e., a most likely to award only a marked degree for severe degree of disability—the CEPAH will not adults (14 of the 24 CEPAHs studied). Therefore, necessarily maintain the severe degree at the age there are significant differences between the of 18, even for identical medical criteria in children disability degree classification carried out by CPC and adults. In most counties (but not all), CPC and for children and by CEPAH for adults. These CEPAH conclusions are similar in cases of severe differences are mainly due to the fact that members functional impairment (according to medical of the evaluation commission for adults (CEPAH) criteria) and complete participation restrictions have more restrictive classification criteria for (according to psychosocial criteria). In these cases, adults than for children, according to SECPAH and both CPCs and CEPAHs will most likely grant a SECC specialists.465 460 Quote and data from the opinion survey Q2B: Practices and experiences of specialists working within the service for comprehensive assessment of adults with disabilities (SECPAH, N=187) and children (SECC, N=143) in 39 counties and 6 districts of Bucharest, January–February 2021. 461 The National Authority for the Protection of the Rights of the Child and Adoption - institution taken over by the current ANDPDCA, through EGO no. 68/2019. 462 The definitions of the types of disability for children are indicative, because they are not provided by law. 463 SECC specialist, quoted from a Q2B questionnaire. 464 On a scale of 1 (none) to 10 (total), SECPAH specialists gave an average score of more than 8 compared to an average score of only 4 given by the SECC specialists on the extent to which they agree with the statement “the classification in the degree (and type for 18+) of disability has remained predominantly medical, although the assessment is based on medical-psychosocial criteria”. Opinion survey Q2B: Practices and experiences of specialists working within the service for comprehensive assessment of adults with disabilities (SECPAH, N=192) and children (SECC, N=83) in 39 counties and 6 districts of Bucharest, January–February 2021. 465 On a scale of 1 (none) to 10 (total), SECPAH and SECC specialists responded that they agree with the statement “the members of the commission for assessing adults with disabilities (CEPAH) have more restrictive disability degree classification criteria than for children” to an extent equal to average scores around 7. Opinion survey Q2B: Practices and experiences of specialists working within the service for comprehensive assessment of adults with disabilities (SECPAH, N=184) and children (SECC, N=61) in 39 counties and 6 districts of Bucharest, January–February 2021. Chapter 8 I 225 Figure 51: Examples of cases and likely resolutions: comparison of the commissions for children (CPC) and adults (CEPAH) (number of responses from CEPAH/CPC presidents) 18.0 18.0 15.0 14.0 10.0 8.0 5.0 4.0 4.0 3.0 3.0 3.0 2.0 1.0 1.0 0.0 Yes No Yes No NR Severe Marked NR Severe Marked NR Marked NR Severe Yes No (most (most (most (most often) often) often) often) CEPAH CPC CEPAH CPC CEPAH CPC CEPAH In the cases of children granted a severe In cases of severe functional impairment (according to medical In the case of severe degree for Type 1 disability degree due to severe functional criteria) and complete participation restrictions (according to diabetes melitus (regardless of stage and Were there any impairment (according to medical psychosocial criteria), what disability degree will be granted complications), most likely, the degree complaints (whether criteria) and complete participation usually? will be...? appeals or not) restrictions (according to psychosocial regarding situations criteria), will CEPAHs most likely maintain such as the previous the severe degree ones, received in cases of young applicants aged 18-26? Source: Institutional study Q3A: Factual data and indicators on the activity of the commission for assessing adults with disabilities (CEPAH, N=24) and children (CPC, N=6), in 22 counties and 2 districts of Bucharest, January–February 2021. Notes: NR = Non-response. The sum of the corresponding CEPAH bars must equal N=24. If the amount is lower, the missing cases are non-responses from the CEPAH presidents. As a result, in the majority of counties studied but this is a rather subjective opinion, given the low (18 out of 24) there are complaints (whether or not familiarity with the other commission’s criteria. appeals have been filed) about these discrepancies Fragmentation between the children’s system (see Figure 51), which shows that this issue has and the one for adults, together with the poor significant impact on a certain percentage of young integration of knowledge, results in very poor people with disabilities as they transition to adult cooperation between the two commissions. Out of life. the 22 counties and 2 districts of Bucharest included Collaboration between CEPAH and CPC could in the institutional study Q3A, the CEPAH and be significantly improved. Lack of cooperation CPC presidents of just one county reported that and mutual understanding of the work done can the two commissions organize joint meetings for negatively impact young people with disabilities. consultation and exchange of experience.466 And As Figure 52 shows, CEPAH and CPC consider that even then, CEPAH-CPC meetings take place only they know well the criteria they use for disability sometimes, when possible. In other words, in no degree classification, but their knowledge of the county have the two commissions developed a assessment criteria of their counterparts is limited. pattern of cooperation based on regular meetings Thus, on a scale of 1 to 10, the average knowledge to discuss and find common solutions to simplify assessment score is higher than 8 on its own or smooth the transition of young people with criteria, while for counterpart knowledge it is 6.4 disabilities to adult life. These findings were also for CPC and only 4.9 for CEPAH. CEPAH and CPC confirmed by interviews with assessment specialists members agree that there are significant differences and people with disabilities. in the classification criteria for children and adults, 466 This county is AG. 226 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 52: Familiarity with criteria for the classification of the disability degree, as self-assessed by CEPAH and CPC members (average values on a scale from 1-none to 10-total) Overall, how different are the classification criteria for children 6.3 and adults? 6.3 How well do you know the criteria for classification by 8.0 deficiency degree and type for children? 4.9 How well do you know the criteria for classification by 6.4 deficiency degree and type for adults? 8.8 0 2 4 6 8 10 CPC CEPAH Source: Opinion survey Q3B: Practices and experiences of the members of the commission for assessing adults with disabilities (CEPAH, N=46) and children (CPC, N=30) in 24 counties and 2 districts of Bucharest, January–February 2021. 8.4. Support measures for transitioning young people with disabilities to adult life The transition to adult life can be problematic for with disabilities aged 16 and over, the PAR objective young people with disabilities. Romania lacks a also includes the transition to adult life, and the simple procedure and good planning to support name of the plan is changed to the habilitation- the transition to adult life, especially after the age rehabilitation and transition to adult life plan. Apart of 18. The first legal provisions concerning this from the provisions of Law no. 448/2006 and Joint transition appeared in Law no. 448/2006 (Art. 30) Order no. 1985/1305/5805/2016, no other measures on the protection and promotion of the rights of are foreseen to ensure the successful transition to persons with disabilities. These provisions aimed adult life of young people with disabilities over 18. ”to ensure the correlation between the services in Existing legislation does not provide clear the protection system of the child with handicap guidance on how the transition should take place. and the services in the protection system of the Many provisions are general and do not clarify adult with handicap.” Nonetheless, most of the the process or responsibilities, although support support measures provided were applicable to all measures for young people with disabilities should young people with disabilities, and not just to those be implemented through cooperation between separated from their families and in the special several stakeholders, such as the family, the school, protection system. including the educational counselor, together with However, more recently, Joint Order no. different educational, health, or social service 1985/1305/5805/2016467 was issued, which providers, and under the coordination of a case includes, among other integrated intervention manager. It is also not clearly specified who is measures, a number of provisions to improve responsible for providing information, support, transition planning to adult life (along with other or preparing the child for the transition from types of transitions). Thus, according to Art. 65 (1), childhood to adulthood; only that the case manager support measures for preparing and adapting the should include these measures in the habilitation- child to the different stages of transition are included rehabilitation plan. As the measures are very broad in the habilitation-rehabilitation plan (or the service and not concrete, the transition process is not plan tailored to the type of transition). More details supported by the authorities and, in most cases, on the transition support measures that can be is abrupt and disturbing for young people with included in the habilitation-rehabilitation plan disabilities and their families. (PAR) are provided in Annex 8. For young people 467 Order approving the methodology for integrated assessment and intervention for the classification of children with disabilities in a degree of disability, for the school and professional orientation of children with special educational needs, and for the habilitation and rehabilitation of children with disabilities and/or special educational needs. Chapter 8 I 227 The measures laid down in the legislation are not (regardless of the group’s size and selection fully implemented, and are not for all young people criteria) to understand the effects of passing with disabilities. In order to substantiate this result from childhood to adulthood, both in terms of we present the main findings of the field research, the decline in benefits and services per child, and organized in the order of the specific measures whether there are groups disproportionately provided by Law no. 448/2006 (Art. 30) as being the likely to lose more than average. obligation of the responsible public administration • Only one SECC out of the 31 in the Q2A authorities. sample (from VS) reported that they organize a) Plan and ensure the transition of the young ice-breakers and get-to-know-you meetings person with disabilities from the child between 16–17-year-olds and their parents with protection system to the adult protection SECPAH/CEPAH representatives. In the other system, based on their identified individual counties, SECCs do not conduct such planning needs activities. For young people with disabilities living in the b) Ensure the continuity of services for people child special protection system (separated from with disabilities their family), case managers plan and ensure the For young people in the child special protection transition to the adult protection system. system, continuity of services is provided for those But for young people with disabilities living who are transferred to the protection system for with their family: adults with disabilities, but not necessarily for those • At national level, for only 2–3 percent of the returning to the family/community. 16–17 age group assessed in a year, the SECC But for the young people with disabilities in the obtained a statement of intent (in writing) care of the family:468 from the parents/representatives regarding • Up to age 18, SECC provides children/young the family’s plans to proceed with applying for people with disabilities with case management, the classification as an adult with disabilities. and a SPAS representative is the caseworker In fact, only two SECCs (in VL and IL) have who is obligated to ensure the implementation developed such a practice. Although there of the habilitation-rehabilitation plan (PAR).469 is no legal requirement to do so, the practice Although this provision is not met in all is useful in helping young people/parents/ communities,470 it can be said that the majority representatives raise awareness and organize of young people with disabilities benefit from for the transition, and also SECC and SECPAH case management services. For example, about to plan activities associated with preparing and 90 percent of 16–17-year-olds with disabilities transitioning these cohorts of young people from have completed the transition to adulthood the evaluation of children with disabilities to the PAR, according to data reported by SECC evaluation of adults with disabilities. chiefs. When the child turns 18, Joint Order • Out of the 31 SECCs participating in the no. 1985/1305/5805/2016 states that SECC institutional survey Q2A, only 4 reported transfers the disability degree classification that they carry out, at the request of parents, case to SECPAH, together with a copy of the a simulation of possible outcomes of the latest disability degree reclassification file. After disability degree classification evaluation based the transfer, only a small share of adults with on the criteria and procedures used for adults disabilities living with their families (and only in (by SECPAH/CEPAH), but without having some counties) benefit from a case manager or an developed a dedicated tool (of any type) for Individual Service Plan (PIS), as demonstrated this purpose. More generally, neither SECC, in Chapter 6. As a result, the continuity of case SECPAH, nor ANDPDCA has ever conducted management services is poor for young people any simulation on a group of young people with disabilities in the care of their families.471 468 The data in the paragraphs below were reported by the SECC chiefs of 27 counties and 3 districts of Bucharest, for 2019 and 2020. Institutional study Q2A: Factual data and indicators on the activity of the service for comprehensive assessment of adults with disabilities (SECPAH) and children (SECC), January–February 2021. 469 The PAR is an appendix to the disability certificate issued by the Child Protection Commission and is monitored every six months for children in the care of the family and every three months for children in the child protection system. 470 For details, see Section 9.1.1 of Chapter 9. 471 In general, for young people from the child special protection system who transfer to the protection system for adults with disabilities, 228 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM • Discrepancies in determining disability in from childhood to adulthood, with support children and adults can lead to a sudden change identifying alternative scenarios to follow. in benefits and services once they turn 18. Out of Additionally, no SECC organizes mediation and the services available,472 the loss of the right to anticipatory labor market integration programs a personal assistant is a major challenge in the for the parents of 16–17-year-olds (possibly transition from childhood to adulthood. Up to in collaboration with specialists from county age 18, all children/young people with a severe employment agencies) in case they lose their disability are entitled to a personal assistant.473 personal assistant status when their children Thus, data reported by the SECC chiefs indicate become adults. that almost half of the 16–17-year-olds benefit c) Establish measures aimed at preparing young from a personal assistant. When the child turns people for adult life and for independent living 18 and is transferred from SECC to SECPAH, Transition to adulthood is not associated with an according to the adult criteria and procedure, independent living skills assessment or program they may be classified with a degree other that is applied uniformly across the country for all than severe, and even if they are granted the young people with disabilities. Therefore, there is severe degree, they may or may not be entitled no data on either the baseline level of independent to a personal assistant. Loss of the right to a living skills at a given age or on the potential for personal assistant means, in most cases, loss or evolution of these over time. Also, the lack of of employment for the parent employed as a data refers to both young people in the child special personal assistant and, consequently, a significant protection system and those in the care of their reduction in family income. Therefore, the loss of families. the right to a personal assistant was mentioned in interviews with young people with disabilities d) Carry out, in collaboration or in partnership as a main source of dissatisfaction and anxiety. with public or private legal persons, training On the other hand, in the opinion surveys, all programs for adult life specialists mentioned the changing conditions Concerning both young people in the child special of the personal assistant service as a factor protection system and those in the care of their that has considerable negative influence on the families: continuity of benefits and services, and on the • Only in isolated cases are adult life preparation lives of children and their families.474 This is all programs and transition measures for the more true because the change is not gradual, young people with disabilities carried out in but rather abrupt, with limited support available collaboration or partnership with public or to adjust to the new situation. private legal entities. Over a year, only around 2 • None of the 31 SECCs participating in the percent of the 16–17-year-olds assessed by SECC institutional study Q2A conduct counseling participated in such programs nationwide, and sessions with the parents of the 16–17-year- they come from only four counties and one olds, following a systematic timetable, on the district in Bucharest.475 In the other counties, advantages and disadvantages of the transition SECC does not run such partnership programs. case management is provided, and the recommendations in the HRP are taken up/continued through the measures included in the Individual Service Plan (PIS), Personalized Plan for beneficiaries in residential centers (PP), Personal Future Plan for beneficiaries in sheltered housing (PPV) or in other types of tailored plans mentioned in the legislation. 472 People with disabilities in Romania receive a basic package of medical services, including regular health check-ups and disability- based medical care. Also, depending on the degree and type of disability, a person may receive home care from a personal assistant, care in a day care center, care in a residential care center, or a guardian’s allowance. 473 According to Article 35(1) of the Law no. 448/2006 on the protection and rights of persons with disabilities, as amended by EGO no. 51/2017. However, there are some restrictions. For example, children placed in foster care are not entitled to personal assistant, even if they have a severe disability degree. Also, for a beneficiary of personal assistant, on the child’s certificate must be written “severe degree with personal assistant.” 474 On a scale of 1 (not at all negative) to 10 (completely negative), the average influence scores were: 6.9 - SECC, 7 - CPC, 8 - SECPAH, and 8.4 - CEPAH, respectively. Sources: (1) Opinion survey Q2B: Practices and experiences of specialists working within the service for comprehensive assessment of adults with disabilities (SECPAH, N=184) and children (SECC, N=165), in 39 counties and 6 districts of Bucharest, January–February 2021; (2) Opinion survey Q3B: Practices and experiences of the members of the commission for assessing adults with disabilities (CEPAH, N=43) and children (CPC, N=24) in 24 counties and 2 districts of Bucharest, January– February 2021. 475 These counties are SB, CT, B-Sector 6, IL and SV. Countywide shares range from about 6 percent to 26 percent of the 16–17 age group assessed by the SECC annually. Chapter 8 I 229 e) Carry out activities to inform young people educational assessment, even if the young person / with disabilities about opportunities for legal representative does not request it: education, employment, access to family and • In the case of young people over 18 who are still social life, and various means of leisure in pre-university education, SECPAH works Concerning both young people in the child special with educational counselors from the CJRAE protection system and in the care of the families: network to assess the level of education in only • In Section 8.1, we showed that the information 4 counties and one district in Bucharest,477 out of available to prepare for the transition to adult 36 that took part in the institutional study Q2A. life is very unevenly distributed across the • The majority of CEPAHs report that they do country, general in nature, and does not really not issue professional orientation certificates, support young people with disabilities or their as shown in Section 5.2.6. Therefore, at least in families. Current regulations do not provide recent years, extremely few 18–26 year-olds have details on what type of information should be benefited from vocational assessment leading to included or who should provide it. Therefore, a professional orientation certificate. the information is often limited to the fact that In conclusion, the above-mentioned analysis when they turn 18 they will have to apply for the shows that support measures for young people type and degree of disability classification from with disabilities do not ensure a coherent or smooth another service (SECPAH/CEPAH). transition to adult life. On the contrary, most • At national level, less than 20 percent of measures are available only in a few counties and the 16–17-year-olds assessed by SECC in a for a small number of youth. The lack of linkage year receive information about educational and cooperation between the children’s system and opportunities, employment, access to family and the one for adults leaves youth and their families social life, or different leisure activities. These to fend for themselves with the resources they can young people are in only 9 of the 31 counties personally mobilize. Insufficient information and studied.476 In most counties the SECC does not anticipatory preparation, as well as a lack of advice provide such information. and guidance along the way, make the transition f) Assess, on request, pupils with disabilities and to adulthood a turning point that has negative special educational needs (SEN) consequences for many areas of life, not only for The SEN assessment is provided to all children and youth, but also for their families. In interviews, young people, upon request, by the County Centers young people with disabilities describe the for Educational Resource and Assistance (CJRAE) transition to adult life as “abrupt,” “frustrating,” and not by the SECC. and “excruciating.” For young people with disabilities over the age of 18, SECPAH has the obligation to make the 8.5. Scenarios for reforming the transition from childhood to adulthood As previous sections have shown, it is imperative and communication, and clear and transparent to respond to the challenges faced by young procedures. In fact, in the research carried out for people with disabilities in their transition to this volume, the majority of experts, policymakers adult life. This can be done by ensuring early and and young people with disabilities expressed the coordinated planning, effective information sharing need to reform the transition. 476 The county-level shares of young people who received this information range from around 10 percent to over 90 percent in four counties, namely BH, VN, NT and B_Sector 4. 477 These are BC, BN, DJ, TR and B-Sector 6. 230 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 53: Preferred scenarios to ensure a smooth transition from childhood to adulthood for young people with disabilities, according to CEPAH and CPC members (%) 74 77 73 67 57 40 45 33 21 18 19 14 12 14 14 14 2 5 Scenario A Scenario B Scenario C Scenario A Scenario B Scenario C CEPAH CPC The best scenario for the future Possible scenario, but not favorite The least good scenario Source: Opinion survey Q3B: Practices and experiences of the members of the commission for assessing adults with disabilities (CEPAH, N=42) and children (CPC, N=22) in 24 counties and 2 districts of Bucharest, January–February 2021. Notes: Scenario A: The current situation is maintained, but young people aged 18 to 26 are assessed on the same criteria as children (in the spirit of ICF– CY). Scenario B: Modification of the classification for adults by developing new criteria that are in the spirit of the ICF and therefore harmonized with the criteria used for children. Scenario C: There should be a special program for transition from childhood to adulthood for young people aged 16 to 26, with a distinct set of criteria and a procedure involving both SECPAH and CEPAH, as well as SECC and CPC. Three possible scenarios for redesigning the the status quo or changing it—Scenario C proposes transition process to adulthood were tested in the development and implementation of a special the Q3B survey with CPC and CEPAH members. transition from childhood to adulthood program In Scenario A, no new classification criteria are for young people aged 16–26, with a separate set developed for either children or adults. As a of criteria and a procedure involving both SECPAH solution, 18–26-year-olds continue to be assessed and CEPAH, as well as SECC and CPC. And this and classified by SECPAH/CEPAH, but based on special program should include information, children’s criteria and procedures (currently used counseling, mediation, and job-finding support by SECC/CPC). There is a consensus among experts items (in the event of loss of the right to a personal that this is the “least good scenario” (see Figure 53). assistant) for both children and young people, and Scenario B involves developing new criteria for for their parents. Scenario C is considered “the best adults that are in the spirit of the ICF, and therefore solution for the future” by the majority of CEPAH harmonized with the criteria used for children. In (45 percent) and CPC (67 percent) members. At addition, in this scenario, for children and young the same time, however, most argue that the people aged 16–26, an information, counseling, implementation of such a special program is not mediation, and job-finding support program (in the realistic without additional resources, especially event of loss of the right to a personal assistant) is human resources and expertise. developed for both children and young people and The three reform options are only tentative their parents. Reform of the system under scenario illustrative scenarios for testing practitioners’ views. B is considered “the best solution for the future” For the reform itself, however, other alternatives by 40 percent of CEPAH members, but only by a need to be designed and explored. For example, small share (18 percent) of CPC members. The scenarios B and C may include a gradual benefit/ development of support measures is seen as key, service reduction component to be carried out from but at the same time it is perceived to be rather age 16 to 26. This gradual reduction could be applied unrealistic under current conditions and resources to all young people or could be targeted to certain available to both the evaluation services and categories of young people; for example, according commissions. to their level of development of independent living Scenario C proposes a different approach. skills or to those groups that are identified through Regardless of what decisions are made about a simulation as being disproportionately likely to the criteria and procedures for assessing and suffer a greater-than-average decrease in benefits classifying children and adults—either maintaining and services. Chapter 8 I 231 Conclusions of Chapter 8 The assessment of children for disability degree and type classification is no longer based solely on the medical model, but on the social model, which is based on human rights and takes into account the fundamental principles of the ICF. The analysis presented in this chapter revealed major discrepancies between the assessment and 1 the classification of disability degree for children and young people up to the age of 18 and the one for adults aged 18 and over. As a consequence of these discrepancies, the transition from childhood to adulthood is often associated with changes in disability degree or even lack of classification. This can lead to a decrease in benefits, with a significant negative impact on family income and services received by young people with disabilities, which negatively impacts both their quality of life and that of their families. The transition process for young people with disabilities to comprehensive assessment for adults is lacking in information, support, and advice. By the time they turn 18, young people with disabilities often find that they no longer have access to the support and services they need, and fall through the cracks of an ineffective 2 adult protection system. Insufficient initial information about the transition process, misunderstanding of changes to the assessment system, and the absence of general counseling for young people and their families—particularly young people living with their families—makes the transition process difficult for many because it is neither transparent nor perceived as fair (or “just”). In Romania, the process of transitioning to adult life is not fair or transparent, and the differences in terms of disability degree classification create discrepancies in the system. For many young people with disabilities, the transition is abrupt and 3 confusing. Current regulations provide for a variety of support measures for young people with disabilities in their transition to adult life. But, in practice, support is almost nonexistent, leaving young persons with disabilities and their families to cope with their new reality on their own. Reforms are needed to streamline the transition process by developing appropriate services to support young people and their families during the difficult transition period. The transition process for young people with disabilities to adult evaluation 4 should be streamlined by the ANDPDCA and clearly articulated in new laws and procedures, based on the following guiding principles: • A new procedure, possibly drafted jointly between SECC/CPC and SECPAH/ CEPAH, should be introduced that benefits young people with disabilities aged 16–26 and their families. Both comprehensive assessment services and commissions for children and adults should communicate more; they should also have regular consultative meetings and share all assessment documents to facilitate the transition process. At the same time, it would be useful to organize meetings for 16–17-year-olds and their parents to break the ice and get to know SECPAH/CEPAH representatives. 232 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM • The official transition period from childhood to adulthood should be extended, tentatively from 16 to 20. In the case of young people enrolled in education, the period should be extended until they graduate or turn 26. Throughout the period of study, it should be ensured that the same disability degree classification is maintained so that the young people studying continue to receive the same benefits. • From age 16, in addition to regular evaluations, the young person and their family should also receive information about the possible outcome of an evaluation and the criteria and procedures applied to adults (by SECPAH/CEPAH). Dedicated tools should be developed by adult assessment specialists to assist the SECC/ CPC in conducting such simulations. • In addition to information, counseling activities should be carried out with young people with disabilities and their families in order to understand the effects of the transition from child to adult, in relation to a possible reduction in benefits and services provided to the child and the possibility of a significant drop in income following the transition. Counseling sessions could also consider providing support to identify alternative scenarios that could be followed. • Finally, to formulate new evidence-based policies, authorities should systematically collect data on young persons with disabilities aged 16–17 and 18– 26, to ensure continuous and adequate monitoring of these groups’ evolutions, particularly regarding their access to support for successfully transitioning to adulthood and independent living. Efforts should be increased to provide adult life training programs carried out in cooperation or partnership with legal entities, public or private. These programs should focus on increasing the participation of young people with disabilities in both education and the labor market. To this end, easily accessible educational and professional orientation services should be developed to reach as many young 5 persons with disabilities aged 16–26 from the special protection system, and their families, as possible. Also, mediation and labor market integration services (possibly in collaboration with specialists from county employment agencies) could be available under such programs for both young persons with disabilities and their parents, especially in the event of young people losing their right to a personal assistant. The transition to adult life should be coupled with a program to assess the development of independent living skills. Such a program should be applied consistently across the country for all young people with disabilities, especially those who live with family, both before and after the age of 18. Current services to develop 6 such skills are also insufficient, especially for young people with disabilities living with their families. To facilitate the transition of young persons with disabilities to independent living, specific measures should be introduced, starting with the transition to adulthood, to reduce the burden of care for families. For example, this might include a systematic monitoring program for early identification of possible risks/vulnerabilities, or counseling and educational training programs for parents and families. Chapter 8 I 233 Support measures for young people with disabilities do not ensure a coherent and smooth transition to adult life. Most measures are available only in a few counties and for a small number of youth. The development of support measures is seen as key, but at the same time, is not possible under current conditions and resources 7 available to both evaluation services and commissions for children and adults. Policy makers, disability evaluation structures, and NGOs need to work together to identify the main difficulties of the transition to adult life for young people with disabilities and to advocate for solutions and the subsequent adoption of new legislation. 234 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 9. Institutional aspects478 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 INTAKE INDIVIDUAL INSTITUTIONAL ASPECTS, AND DISABILITY DISABILITY PLANS FOR APPEALS AND OUTREACH INCLUDING THE TRANSITION FROM REGISTRATION ASSESSMENT DETERMINATION SOCIAL GRIEVANCES CHILDHOOD TO ADULTHOOD REINTEGRATION 1 2 3 4 5 6 7 PERIODIC REASSESSMENT ASSESS ENROLL MANAGE This chapter analyzes the institutional aspects of key actor’s human resources, data management the key organizational actors involved in disability and information system, procedures, logistics, and assessment and determination. It starts with the other aspects that affect the disability assessment public services for social assistance at the community process. The next sections analyze the profile of level (SPAS), and continues with the services for human resources involved in all core phases of comprehensive assessment for the classification of the disability assessment system, their operation adults in degree and type of disability (SECPAH) in multidisciplinary teams, job descriptions/roles, and the corresponding commission of evaluation workload, as well as training needs. (CEPAH).479 Separate sections delve deeper into each 478 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. 479 The services of comprehensive assessment and the commission for children (SECC and CPC) are not covered, as no data were collected in this sense. Chapter 9 I 235 9.1. SPAS: Public services of social assistance within communities Within the delivery chain of disability assessment, The analysis presented in the next sections is the SPAS plays the lead role in intake and based on data from the Q1_SPAS survey, which registration (core phase 2). SPAS also contributes to uses a sample of localities, but it is not nationally outreach (core phase 1) and implementation of the representative (see Volume 2). Figure 54 shows individual intervention plans (PIS and PIRIS), case that SPAS functions as a compartment with 1–2 management for people with disabilities (core phase employees in most rural localities included in the 5), and handles the actual provision of the benefits sample, whereas in urban areas, the direction is and service package. Thus, the performance of SPAS the dominant organization form of SPAS, most of significantly influences the disability assessment which have between 3 and 59 employees. A few of process during these three core phases (1, 2, and 5). the studied SPAS are not separate administrative In Romania, only about a third of the local structures, but have only one staff member who authorities has a SPAS at the local level, accredited is hired by the municipality and has social work according to the law. SPAS can be organized in three duties. Correspondingly, out of the total personnel forms: direction, service, or compartment. The Q1_ employed in the sample of 67 surveyed SPAS, SPAS survey comprises SPAS with all these forms only a small proportion operate in rural areas (15 of organization, including some municipalities that percent of the total 478 employees).481 These human did not comply with the legal requirements.480 resources are analyzed in the next section. Figure 54: Distribution of SPAS sample by organization form and number of staff (%) SPAS by form of organization (%) SPAS by number of staff (%) 86 79 74 58 16 20 15 5 7 7 13 10 0 4 4 4 Direction Service Compartment No structure One Two Three 4 to 59 employee employees employees employees Rural Urban Rural Urban Source: SPAS survey with responses from 67 localities (N=40 rural and 27 urban) situated in 26 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January–February 2021. 9.1.1. Human Resources of SPAS SPAS staff serve the entire community, including a and 3–59 in larger cities,482 while rural SPAS have variety of at-risk groups, children and their families, just 1–2 staff members.483 people with disabilities, the elderly, the long- However, in both rural and urban areas, a term unemployed, victims of domestic violence, quarter of the surveyed SPAS reported that their homeless, people with various addictions (alcohol, staff is insufficient to serve persons applying for drugs, other toxic substances), victims of human classification into a degree and type of disability. trafficking, persons deprived of their liberty, and so Only a few respondents mentioned staff turnover on. In the urban SPAS, more staff are involved in being an issue (less than 10 percent, both in rural social work activities: 1–10 employees in small cities and urban areas). 480 GD no. 797/2017 for the approval of the framework regulations for the organization and functioning of the public social assistance services and of the indicative staff structure. 481 The Q1_SPAS survey collected data only about the SPAS personnel without including the staff employed in social centers and other social services units within SPAS or other institutions subordinated to SPAS (nurseries, medical offices in schools, medico-social entities, hospitals, etc.). If social services are included, then in some larger cities the SPAS would comprise hundreds of employees. 482 About a quarter of the small cities have a SPAS like the rural ones (no structure or a compartment with 1–2 employees). 483 In less than a quarter of rural SPAS, the number of staff is higher, up to six employees. 236 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 55: SPAS personnel by level of education, specialization, and attribution (%) SPAS personnel by level of education and specialization (%) SPAS personnel by attributions (%) 32 34 1 30 25 22 10 14 14 15 12 8 10 10 9 Management 21 34 1) Social work 2) Others but 3) No training 1) Graduated 2) No training Low level administrative staff graduated in social a course in in social work 19 Specialists ** 10 a course in work social work 5 social work Community workers* 37 29 With social work duties Tertiary education Secondary education (Professional) Social worker Rural Urban Rural Urban Source: SPAS survey with responses from 67 localities (N=73 employees in rural SPAS and 405 employees in urban SPAS) situated in 26 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January–February 2021. Note: The sum of columns by rural/urban is 100 percent. * Community workers include community nurse, Roma expert, community mediator, home caregiver, school mediator. ** Specialists include public procurement adviser, legal adviser, counselor, lawyer, economist, inspector (of all kinds). Specializations other than social work include sociology, psychology, law, economy, administration and political science, engineering, geography, and others. Staff profile Staff structure The majority of SPAS staff are women.484 They SPAS staff should include at least one person range in age from 19 to 65 years old, and have responsible for social benefits and at least two varying experience in social work (ranging from a persons for the provision of social services, of few months to over 30 years).485 The large majority which at least one is a social worker, as per GD no. of the surveyed SPAS staff has completed tertiary 797/2017, Art. 4, para. 2. At the same time, SPAS education. Figure 55 shows that over 75 percent should ensure (i) one case manager responsible of staff from rural SPAS and more than 80 percent for every 50 cases of children for whom a service in urban SPAS graduated from a university, and plan is being implemented; (ii) one case manager most are either a professional social worker or have for every 100 personal assistants for persons postgraduate courses in social work. However, both with severe disabilities; (iii) one case manager in rural and urban SPAS, only around a third of the for every 50 persons with disabilities living staff with tertiary education and who are specialized with family for whom an individualized plan or in social work are members of the Romanian Social protection measures are implemented; (iv) one case Worker National College.486 Notably, this structure manager for every 50 elderly people for whom an is not based on a nationally representative sample individualized assistance and care plan is being of SPAS. For comparison, according to the Social implemented; as well as (v) one person for every Inspection’s audit, 269 out of 408 verified SPAS 300 beneficiaries of social benefits granted based on have no employee specialized in social work.487 means-testing. 484 Women make up 90 percent of total staff in rural SPAS and about 75 percent in urban ones. 485 Average staff age is approximately 45 years old, while the average working experience is almost 11 years, without a significant difference between rural and urban SPAS. Standard deviation less than 9 years, regarding age, and under 7 years for work experience in social work. 486 The Romanian Social Worker National College is a public interest professional organization with judicial personality that is apolitical, autonomous, and independent. Set up by Law no. 466/2004, it defends and promotes professionals’ rights and interests at the local, national, and international level. 487 ANPIS (2019: 6). Chapter 9 I 237 Table 11: Share of SPAS that comply with the indicative staff structure provisioned by the law (%) Rural Urban Total SPAS with valid responses in Q1_SPAS 40 27 Out of which: (%) 100 100 Have at least one employee who satisfies the legal conditions for case managers (*) 65 96 Have at least one social worker (**) 83 96 Have designated at least. . . - one person responsible for social benefits 85 89 - two persons responsible for the provision of social services 20 52 (1) a case manager responsible for children for whom a service plan is being implemented 70 74 (2) a case manager for personal assistants of persons with severe disabilities 55 63 (3) a case manager for persons with disabilities living with family for whom an individualized plan or protection measures are implemented 43 48 Source: SPAS survey with responses from 67 localities (N=40 rural and 27 urban) situated in 26 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January–February 2021. Notes: (*) A case manager should be a graduate of social work, sociology, or psychology with at least two years of work experience in social work or a graduate of tertiary education with other specializations and at least five years of work experience; (**) Social worker = graduate of social work or with tertiary education in other specializations and postgraduate course in social work. This indicative personnel structure provisioned Third, regulations are not sufficiently specified by the law is only partially implemented, as Table to allow proper implementation, monitoring, and 11 shows. First, this is an effect of the small staff evaluation. On the one hand, the thresholds used size at the SPAS level. Especially in rural areas, a in the legislation are appropriate only for the larger compartment of two persons should designate so cities. For example, in our sample, the threshold of many different types of case responsible/managers 100 personal assistants is met only by one (out of as shown in Table 11, while 35 percent of the 10) small city and 12 (out of 17) larger cities, but surveyed rural SPAS and even a few small cities none of the 43 communes. Even so, 55 percent of do not have staff who meet the legal conditions for the communes and 63 percent of the cities in the being a case manager. Furthermore, some of the sample have appointed case managers for personal SPAS that comply with the indicative personnel assistants of persons with severe disabilities (see structure report that “it is only one person covering Table 11). On the other hand, the meaning of “one all these duties.”488 case manager for every 50 persons with disabilities Second, the requested different types of case living with family for whom an individualized plan responsible/managers, as per GD nr. 797/2017, or protection measures are implemented,” foreseen reflect the fragmentation of the broad social in GD no. 797/2017, is not rigorously defined, protection system in sub-systems with their own while the data available at the local level does not legislation, staff regulation, and standards. An allow most SPAS to count how many people with integrative approach would reduce the number of a disability certificate are within the community. necessary caseworkers. Usually, a certain proportion Accordingly, the SPAS representatives do not of households tend to concentrate on several types interpret or apply this specific legal provision in a of social and economic risks, and an integrated uniform manner. approach would ensure case management for all household members, whether children or adults, with or without disabilities. 488 Quotation from a Q1_SPAS questionnaire from the rural area. 238 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Different interpretations of the legal provisions in GD no. 797/2017 provided by SPAS representatives Most SPAS representatives Consider the case management standards and regulations apply only to people with disabilities living in institutions. Other SPAS representatives Think that this legal provision refers strictly to persons with severe disabilities and personal assistants. Especially SPAS from rural Consider that this legal provision “does not apply to us, we do all that we communities can, we help everyone from person to person, as human beings.”489 Especially SPAS from large cities “As there are no quality standards for case management for adults with disabilities living in the family, it is difficult to implement/standardize the activity in this field. For example, in our city, there were 6,122 adults with disabilities in the family, as of 30.11.2020. Hence, according to Art. 4 para. 3 of GD 797/2017, we should have designated 122 case managers!”490 By the same logic, the Romanian Social Worker National College calculated the need for over 15,300 case managers for persons with disabilities in care of the family at the national level.491 Notes: a. Interview with SPAS representative from a rural area; b. Excerpt from Q1_SPAS, Direction for Social Assistance from a county seat; c. This estimate is calculated by dividing by 50 the total number of 766,449 people with disabilities living with family, as of June 30, 2020 (MMPS, Statistical Bulletin).489 Staff workload490491 The workload of staff who operate in the field of telephone, WhatsApp, or Skype interview. In urban people with disabilities varies across localities.492 In areas, each SPAS member conducts an average the rural areas, each SPAS member should conduct number of seven social inquiries per month, out of about nine social inquiries with applicants for which two are not based on home visits.494 Besides disability assessment in a typical month.493 Usually, social inquiries, SPAS should monitor children with as discussed in Section 3.3.2, most social inquiries disabilities living within the community; monitor (almost eight, on average) consist of home visits, and persons with severe disabilities; and conduct case one social inquiry is based either solely on documents management of personal assistants, alongside or on a combination of a document review and several other duties.495 489 Interview with a SPAS representative from rural area. 490 Quotation from a Q1_SPAS, Social Assistance Directorate from a county seat. 491 This estimate is calculated by dividing by 50 the total number of 766,449 people with disabilities living in families, starting with 30 June 2020 (MMPS, Statistical Bulletin). 492 The estimate used in this report shows the number of social inquiries for applicants for disability assessment per SPAS employee, per month. This rough estimation is based on the assumption that these social inquiries are evenly distributed among the SPAS employees, which is not always the case. To control the effect of COVID-19, the estimate is based on the data for November 2019 (or a pre-COVID typical month). The estimation uses data from the SPAS survey with responses from 50 localities with all necessary data (N=30 rural and 20 urban) situated in 24 counties; the districts of Bucharest are not included since the DGASPC also plays the role of SPAS, January–February 2021. 493 In the surveyed rural localities, the number of social inquiries per SPAS member ranges between 0.5 and 34, in a typical pre-COVID month. For November 2020, the average number was reported as being higher, approximately 10. 494 In the surveyed urban localities, the number of social inquiries per SPAS member ranges between 0.65 and 27.25, in a pre-COVID typical month. For November 2020, the average number was lower, namely 5 social inquiries. 495 SPAS should provide and administer social services addressed to the child, the family, the persons with disabilities, the elderly, as well as all categories of beneficiaries provided by law, and are responsible for the quality of the services provided. Complementary to the provision of services in the field of protection of the person with disabilities, SPAS should (i) monitor and analyze the situation of persons with disabilities in the administrative-territorial unit, as well as the observance of their rights, ensuring the centralization Chapter 9 I 239 The available data, however, do not allow a better combat poverty (Order393/630/4236/2017).496 estimate of the workload associated with the In 2020, less than a quarter attended at least one disability assessment within SPAS. training session of any type.497 Furthermore, only 6 persons (out of 478) benefitted from training on 9.1.2. Training of SPAS Personnel the role and responsibilities of SPAS for classifying persons with disabilities by degree and type of SPAS personnel receive very limited training. Only disability. Only three employees were trained on two-thirds of urban SPAS and less than 20 percent how to complete the framework model498 for the of the rural SPAS have a lifelong learning plan mandatory social inquiry. Just five SPAS members for personnel. In the past three years, out of 478 attended training that also included information employees who work in the surveyed SPAS, only on the framework template499 for the social inquiry 18 percent attended training for better intervention requested for the assessment of children with and teamwork, to implement integrated community disabilities. services necessary to prevent social exclusion and “Employees of the DGASPC working with persons with disabilities in care of the family 9.1 have never been invited to meetings, trainings, workshops organized by ANDPDCA for DGASPCs.500 Although local specialists are members of the assessment team (conduct social inquiries, reports, monitoring) and should work with SECPAH/SECC employees, so they should participate in joint training actions in order to understand everyone’s role in this complex process of assessment and monitoring.” (Excerpt from Q1_SPAS, Directorate for Social Assistance from a county seat) There is also scant supervision. Less than 15 useful? We just have to do our job, let those from percent of the rural SPAS and fewer than 20 percent of SECPAH/SECC learn about this theory, we stay the urban ones designated a social work supervisor focused on the reality.”502 Therefore, the current for staff with secondary education. Additionally, training and mindset of local level practitioners “supervision by the national or county agencies is is not conducive to change and might hinder missing. When new regulations in the social work the system’s reform. Training at the SPAS level is field are issued, usually, no meetings, experience critical to promote any systemic change. To this sharing, conferences, workshops, dissemination of aim, a special budget should be earmarked that any kind, let alone training are organized.”501 considers the current market prices of accredited Regarding the ICF, SPAS personnel training training providers. is extremely limited. Out of 478 employees of the surveyed SPAS, only 5 persons have ever attended 9.1.3. SPAS Data Management and training in connection with the ICF. The SPAS Information System representatives score the need for training on ICF, as well as on the UNCRPD, as an 8 on a scale of At the SPAS level, an information system for 1–10, on average. Nonetheless, among them is also managing and administering the disability-related well represented the opinion: “How would this be system is nonexistent, and processes are rarely and synthesis of relevant data and information; (ii) identify and evaluate situations requiring the provision of services and/or benefits for adults with disabilities; (iii) create access conditions for all types of services corresponding to the individual needs of persons with disabilities; (iv) initiate, support and develop social services centered on the person with disabilities, in cooperation with, or in partnership with public or private legal persons; (v) ensure the share of professional staff employed in relation to the types of social services; (vi) provide counseling and information to families on their rights and obligations and on locally available services; (vii) involve the family in the care, rehabilitation, and integration of the person with disabilities; (viii) provide disability- specific training for staff, including personal assistants of people with severe disabilities; (ix) encourage and support voluntary activities; (x) collaborate with the DGASPC in the area of the rights of persons with disabilities and forward all data and information required in this area to DGSACP. As per GD no. 797/2017 for the approval of the framework regulations for the organization and functioning of public social assistance services and the indicative staff structure, including Annex 2 and Annex 3. 496 The proportions reported by SPAS were 19 percent of employees in urban and 14 percent in rural localities. The trained employees belong to a third of the urban SPAS and a fifth of the rural SPAS included in the sample. 497 Both for rural and for urban localities, the proportions reported by SPAS were 22 percent of employees, coming from 45 percent of the urban SPAS and 25 percent of the rural ones. 498 GD no. 430/2008, Annex 6. See more details in Section 3.3.3. 499 Joint Order no. 1985/2016, Annex 6. 500 According to the legislation, ANDPDCA / Higher Commission for Assessing Adults with Disabilities has no responsibilities for methodological coordination of SPAS. 501 Interview with SPAS representative from a county seat. 502 Quotation from a Q1_SPAS from a small city. 240 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM automated (if any at all). Most activities connected of 71) report having “a comprehensive database” with the disability assessment are paper-based. of adults with a disability certificate living within Documents may be partly required/received in their locality. Most of the others do not know how electronic format, but “in the end, all files and many persons with disabilities live in their locality, documents must also be available on paper.”503 as “there is a confusion between people with a Some communication may involve technology disability certificate and those with an invalidity (telephone, electronic mail), but most relies heavily pension, we cannot differentiate between them, on face-to-face interactions and applicants’ repeated we know only those receiving some sort of benefits visits to various desks. from the municipality such as people with personal Only a few SPAS, particularly from larger cities, assistants.”506 have a specific procedure (or sections/chapters in However, even SPASs that report having “a the general procedure) for organizing and storing comprehensive database” actually refer to mere lists data and information.504 The majority of SPAS keep that do not support daily operations or program copies of documents related to disability assessment administration. Thus, only 11 of the 71 surveyed applications for five years. A minority of them SPAS can use the existing database to reconstruct the have transferred and stored those documents in history of a person with disabilities who is applying electronic format,505 while the others store them in for disability (re)assessment. Also, when asked to paper format. provide data about the characteristics of persons There is scant use of software applications with disabilities in their locality, most responded that automate key functions and processes such that data are not available (total nonresponse) or as cross-checks, validation and verification, provided partial information (partial nonresponse), administration of benefits, administration of as shown in Figure 56. payments, beneficiary data management; much of this work is done manually. Some SPAS (30 out Figure 56: How much do SPASs know about persons with disabilities who live in their locality (number of SPAS) Data about young people 16-17 years old About 18-26 years old About 27+ years old All data 9 8 7 Partial non-responses 13 13 15 Total non-responses 49 50 49 Source: SPAS survey with responses (N=71) from 26 counties, the districts of Bucharest are not included since the DGASPC also plays the role of SPAS; January–February 2021. The sum of values per pie is equal to the total of 71 SPAS in the sample. The analysis of nonresponses shows that less gender, age, social status, vulnerable group,507 the than 10 of the surveyed SPAS can provide all existence of individualized plans of intervention,508 requested data regarding the distribution of persons professional orientation certificate, and case with disabilities residing in their locality by the manager. Only a few SPAS have the capacity to following dimensions: degree and type of disability, develop and maintain a comprehensive database the validity term of the disability certificate, of people with disabilities. A national database 503 Interview with the chief of a SPAS from a large city. 504 Only 16 SPAS out of the 67 in the sample report having such a procedure. Half of those is from larger cities. However, only 7 provided this procedure as part of the survey response package. 505 Only 11 SPAS (out of 71), of which 6 are rural and 5 are urban. 506 Interview with a social worker from a rural SPAS. 507 SPAS were asked to report how many people with disabilities within their community are (i) living with family; (ii) homeless; (iii) persons under guardianship of a family member; (iv) persons under guardianship of the local authority; (v) under trusteeship; (vi) persons with 8 classes (gymnasium) or less; and (vii) persons that cannot be moved. 508 People with disabilities who benefit from a PIRIS and a PIS, respectively, besides the disability certificate. Chapter 9 I 241 with a special level of accessibility for SPAS would SPAS use the data collected through social inquiries be “much more useful and efficient, including for for reporting and documenting public policies avoiding gaps and overlapping social benefits and relevant to persons with disabilities. About a third services, as well as in the cases of people changing of the sample complies with current regulations512 their residence from a locality to another.”509 and deliver to the DGASPC at the county level a The results presented above are consistent with quarterly report about the beneficiaries, suppliers the findings of other studies.510 For example, the of social services and social services administered Social Inspection’s audit found that among 408 by them, as well as the social services monitoring verified SPAS, only 282 had a registry of people and assessment reports. with disabilities living within the locality, including More generally, over half of the SPAS sampled information only on name/surname, disability claim to use the available data to document public certificate issuance date, and validity term. policies relevant to persons with disabilities, Nonetheless, a total of more than 16,450 adults especially to prepare local strategies and identify with disabilities were missing from the existing needs for social services. Notably, two out of every local registries. The registered persons were those three SPAS that report using data to document with severe disabilities with personal assistants (or programming and strategic documents lack or have an allowance for one) and adults with disabilities only partial data about persons with disabilities in who applied for reassessment. To address the gap, their locality.513 Therefore, the existing documents the ANDPDCA is currently implementing an EU- are rarely evidence-based. In short, some SPAS funded project for developing a National Disability lack data but make policies, while others have Management System. The project’s general objective solid data but do not use them to make policies is to develop and implement a centralized national that target people with disabilities. However, most platform to collect, store, and distribute information of those that develop local policies state that they on people with disabilities (adults and children) use a participatory approach—one that involves to central and local public authorities, individual the representatives of people with disabilities—to beneficiaries, and institutional partners.511 analyze data and define policies. Regardless of whether they have a database, some 9.1.4. Material Resources More than half of surveyed SPAS report that they lack sufficient area for offices, as illustrated in the next photos. They also lack a dedicated space to communicate confidentially with applicants, and lack sufficient storage space. Besides the insufficient space, respondents mentioned there is a critical need for equipment (including printers, scanners, mobile phones, tablets, or laptops) to make SPAS more efficient. Most have personal computers, but many are obsolete and poorly equipped with software applications: “We would really need a software application at least for recording the social inquiries, managing the payments of social benefits, and reporting.”514 In addition, social workers from rural areas particularly mentioned the need for a car to conduct the home visits required by social inquiries, particularly because there are no means of transportation between villages. 509 Quotation from the Q1_SPAS completed by the head of a direction for social assistance from a county seat. 510 Inspecția Socială (2020: 10). 511 http://anpd.gov.ro/web/wp-content/uploads/2019/10/ANUNT-WEB-final-ANPD-v2.pdf 512 GD no. 797/2017, Annexes 2 and 3, Art. 6, letter c. 513 Out of the sample of 71 SPAS, 39 claims to use the data collected through social inquiries for developing local policies for people with disabilities. Out of those, 26 could not provide any data regarding the characteristics of people with disabilities from their community (total nonresponse). At the same time, among the 32 SPAS that do not use the available data for documenting local policies, there are 9 SPAS with a comprehensive database regarding people with disabilities. 514 Quotation from the Q1_SPAS completed by a social worker of a social assistance direction from a county seat. 242 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 9.2. SECPAH: Services for Comprehensive Assessment of Adults with Disabilities In Romania, there are 47 SECPAH services. The contributes to outreach (core phase 1) and intake DGASPC provide these services in all 41 counties and registration (core phase 2). and 6 districts of Bucharest. The institutional survey Q2A collected data about SECPAH human Staff size resources, while data regarding SECC (for children) Each SECPAH employs between 5 and 22 specialists. were not included. The next sections are based on There are significant differences between the responses provided by SECPAH from 35 counties average number of SECPAH employees depending and 4 Bucharest districts (Q2A and Q2A_Human on the size of the population of adults with a capital), which, out of 346 practitioners, 201 disability degree officially registered in the county participated in the opinion survey (Q2B). (Figure 57). However, a closer look reveals that 9.2.1. Human Resources of SECPAH the number of specialists employed in SECPAH is more a County Council’s decision rather budget- Within the delivery chain, the SECPAH is the key wise than based on the size of the population of actor in conducting the disability assessment for persons with disabilities officially registered in classification into degree and type of disability a county. Thus, in some of the counties with the (core phase 3). It also takes a lead role in elaborating largest official population of adults with disabilities and monitoring the individual intervention plans (such as OT, VL, IS, or AG), the SECPAH team has (PIRIS and PIS) and case management for people the same number of specialists as counties with the with disabilities (core phase 5). Additionally, it smallest populations (such as IL, HR, or GJ). Figure 57: Difference between counties regarding the official population of adults with disabilities and the number of SECPAH specialists 30 Average values 25 25 25 26 26 16.75 15 11 12 11 9 9 10 8.43 8.75 6 6 6 6 6.22 6 6 7 7 5 IL TL GR HR GJ OT TM VL IS CJ AG ts 15 20 38 ric -< -< -< ist 6.3 15 20 td D D D es w w w ar lP lP lP ch ta ta ta To To Bu To Thousand adult persons with disabilities (MMJS Statistical Bulletin, Dec 2019) Number of SECPAH staff Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 35 counties and 4 districts of Bucharest, January-February 2021. Notes: PwD = persons with disabilities. County CV with the lowest number of adult persons with disabilities in the country, as well as PH with the largest, is not included as it has not responded to the survey. The average values are calculated for clusters of counties determined according to the official population of adults with disabilities, as of December 31, 2019 (MMPS, Statistical Bulletin). The differences between averages are significant according to a One-Way Anova (p=.000). Chapter 9 I 243 Staff structure 9.2 Only a few SECPAH comply with GD no. 268/2007 (Art. 49), which stipulates that SECPAH teams should include professionals with the following specializations: social worker (with higher education); specialized doctor;519 psychologist; psycho-pedagogue (or educational psychologist); “We, in Argeș, … have 6 people/employees with physiotherapist; education instructor; and the SECPAH and a doctor. We work overtime, we rehabilitation therapist/teacher. Figure 58 shows work on weekends, this assessment is more than we that most SECPAH teams are composed of social can deal with both physically and in terms of time.” workers, psychologists, and specialized doctors (Focus group SECPAH) (predominately family doctors and general practitioners).520 Specializations like psycho- pedagogy, physiotherapy, education instructor, In the opinion survey,515 SECPAH practitioners or rehabilitation therapist are very rare. Those (chiefs and members) consider that the number specialists represent very small proportions of the of SECPAH specialists is sufficient to serve those total SECPAH personnel and are found in very few applying to be classified into a degree and type counties. of disability. Nevertheless, a third of respondents The incomplete structure of personnel by consider the staff to be insufficient, and most of specializations affects how SECPAH performs these complaints come from counties with a large the disability assessment based on the medico- population of persons with disabilities and a small psychosocial criteria. The lack of specialists SECPAH, as illustrated by the quote below. Staff to conduct the vocational, educational, and turnover is not perceived as a problem. assessment of abilities and social integration means Staff profile that most SECPAH in the country cannot provide a full-fledged assessment as required by the current Most SECPAH personnel are women who range legislation (see Chapter 4).521 in age from 22 to 68 years old.516 Over 94 percent Nonetheless, in the opinion survey,522 SECPAH of SECPAH personnel have completed tertiary specialists consider the current personnel structure education, and many have postgraduate studies.517 by specializations as sufficient to serve those The average working experience is almost 7 years,518 applying for disability classification. A share of 18 but there are considerable differences between percent consider the existing specializations to be counties, ranging from 2–3 years (in counties such insufficient and should be diversified. Even so, as VL or TL) and more than 10 years, on average (in in some counties, the need for more specialists is counties such as BT, IL, SJ, or IS). acute, as emphasized during focus groups. 515 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=198), from 36 counties and the 4 districts of Bucharest, January–February 2021. 516 The share of women is 87 percent of total staff, while the average age is approximately 44 years old (and standard deviation under 9 years). 517 Out of the total SECPAH personnel, 37 percent have a master’s degree or doctorate and 57 percent have a university degree. 518 The work experience within SECPAH ranges from a few months to over 24 years. 519 No requirements are provisioned in the law regarding specific physician specializations. 520 Information on the specialization of SECPAH chiefs is provided in Chapter 4, Section 4.1.2. 521 GD no. 268/2007, Art. 48. 522 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=198), from 36 counties and the 4 districts of Bucharest, January–February 2021. 244 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 58: SECPAH staff by specialization 40 35 37 35 30 35 32 30 25 25 20 23 20 15 15 15 10 10 10 5 6 5 5 33 18 23 6 13 0 0 Social worker Specialist doctor Psychologist Psycho- Physiotherapist Education Rehabilitation Others* pedagogue instructor therapist Proportion in total SECPAH staff (%) Number of SECPAH that have at least one such specialist (%) Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 35 counties and 4 districts of Bucharest, January-February 2021. Note: *”Others” include mainly graduates of public administration, economics, and law. Physiotherapists account for 3 percent of total SECPAH personnel, while education instructors and rehabilitation therapists represent only 2 percent each. “- The staff… we struggle to do the assessment, but we do not have a physiotherapist, 9.3 an educational psychologist, the doctor comes in twice a week. Nobody registers for the doctor’s position, we put out a job ad. We have a specialized educator who has social assistance tasks. The team needs to be completed. - Completing the team is absolutely necessary in our county as well. For example, my position as a psychologist is moved to a center and I am delegated to work here [with the SECPAH]. We were happy to have had two doctors at one time, but one has retired now.” (Focus group SECPAH 3) Division of tasks across the team The division of labor across the SECPAH team (task A8) by a psychologist; and the vocational varies considerably by county. In some counties, assessment (task A9) by a psycho-pedagogue. Thus, there is no division of labor; all members, regardless at the national level, the dominant pattern complies of their specialization, undertake all tasks, as shown with the regulations, although in some counties in Figure 59. Also, in most counties, the social each of these types of assessments is performed by assessment (task A6) is done by a social worker; SECPAH members with other specializations than the medical assessment (task A7) is carried out by those provided by law. a specialist doctor; the psychological assessment Chapter 9 I 245 Figure 59: Division of tasks within the SECPAH team (% of category) 88 86 79 65 A1 A2 A3 A4 A5 A6 A7 A8 A9 A10 A11 A12 A13 A14 A15 A16 A17 A18 Social worker Specialist doctor Psychologist Psycho-pedagogue Others* The A1. File registration ** A8. Psychological assessment A14. PIS clearance SECPAH A2. File initial verification A9. Vocational assessment A15. PIRIS drawing up team’s A3. Interview scheduling A10. Education assessment A16. File management tasks: A4. Assessment on premises A11. Assessment of the social skills and integration level A17. Management A5. Home assessment A12. Software data entering A18. Other tasks A6. Social assessment A13. Assessment report (including conclusions and A7. Medical assessment recommendations) Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 35 counties and 4 districts of Bucharest, January-February 2021. Notes: The data in the graph were reported in the table of participation in activities of SECPAH staff who collected information on the specific tasks performed by each employee, where the list of tasks was compiled in accordance with the National Framework Procedure (Annex to the Order no. 2298/2012). * ”Others” include mainly graduates of public administration, economics, and law. Physiotherapists, education instructors, and rehabilitation therapists are not included due to the low number of cases (11, 7, and 6, respectively). ** According to the regulations, this task is not the responsibility of SECPAH. Staff workload The workload per SECPAH specialist steeply change, staying flat at about 10, from around 120 in declined during the COVID-19 pandemic, with the Bucharest districts to over 1,200 in OT county. significant variation across counties (see Figure The decline in workload per SECPAH specialist 60). In the pre-COVID period (2019), at the national was recorded in all counties, but the specifics varied level, a SECPAH specialist used to assess 762 files widely. In some counties it almost halved, while per year, on average. The minimum number of in other counties it declined by just 7 percent. At assessed files per SECPAH specialist in a county the same time, discrepancies between counties (Bucharest districts) was over ten times smaller have persisted. The largest disparities in workload than the maximum (in OT); from about 200 to over are registered among counties with the largest 2,100. Due to measures pertaining to the COVID-19 population of persons with disabilities (compare pandemic,523 the average number of files assessed the length of the vertical lines in Figure 60). This by a SECPAH specialist dropped to 554 (or by is because those counties have SECPAH teams 27 percent) in 2020. However, the workload gap with very different sizes (from 6 to 15, as shown in between the minimum and the maximum number Figure 57) for assessing rather similar numbers of of assessed files per specialist per year did not application files. 523 Law no. 55/2020, Art. 4(5). 246 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 9.4 “Our average is 50 people/day, last year we also had 80 people/day. We are completely in over our heads. People talk to the whole team in one room, collective interview, we try to have about 8 minutes/person, the procedure says 10 minutes/person.” (Focus group SECPAH 1, intervention of a specialist from a county with a large population of people with disabilities and a small SECPAH team) Figure 60: Workload per SECPAH specialist (min, max, and average number of assessed files per year) 2500.00 2000.00 1500.00 1000.00 950 696 772 762 742 500.00 493 512 554 277 222 0.00 Bucharest Counties Counties Counties Total Bucharest Counties Counties Counties Total districts with total with total with total districts with total with total with total PwD 6.3- PwD 15- PwD 20- PwD 6.3- PwD 15- PwD 20- <15 thou <20 thou <38 thou <15 thou <20 thou <38 thou Year 2019 Minimum Maximum =Average Year 2020 Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 35 counties and 4 districts of Bucharest, January-February 2021. Note: Average values are calculated for clusters of counties determined according to the official population of adults with disabilities, as of December 31, 2019 (MMPS, Statistical Bulletin). The differences between averages are significant according to a One-Way Anova (p=.05). The workload per SECPAH member varies only one doctor equals the total number of assessed significantly according to each member’s files in the county, which can reach huge numbers, specialization. The estimates analyzed above are such as over 7,200 per year. This means about 600 based on the assumption that the application assessed files per month, which is about 30 files per files are evenly distributed among SECPAH team working day and 3.75 files in each working hour, members. In practice, this is not necessarily the leaving some 16 minutes per assessed file under case. Several respondents reported differences conditions of continuous work. This situation between the team members depending on their appears more frequent in the case of specialized specialization. For example, 32 SECPAH from the doctors. Regarding the psychologists, the number sample have at least one specialized doctor. Out of of assessed files is lower because (i) fewer SECPAH these, 16 SECPAH have only one specialized doctor, have only one psychologist; and (ii) in most and 16 have two or more specialized doctors. In counties, not all files pass through a psychological the teams with only one specialized doctor, he/ assessment; only those that already have a mental she should cover the medical assessment for all or psychological impairment mentioned in the application files. Consequently, the “real” workload medical documents. of a specialized doctor from a SECPAH team with Chapter 9 I 247 An example of how workload is calculated per SECPAH member This example comes from a county with a medium-sized population of persons with disabilities (16,649, as of December 31, 2019), which responded to the workload topic within the Q2A questionnaire. This county has a large team with 11 members in total, which includes 1 specialized doctor, 2 social workers, 4 psychologists, and 4 members with other specializations (3 public administration and 1 engineer who is also medical assistant). According to the SECPAH calculations, in 2020, the specialist doctor’s workload was 6,718 assessed files; the workload per psychologist was 2,240 files; while the workload per social worker was 1,680 files. This indicates that 1 psychologist (of 4) has attributions of a social worker, as does one member with public administration/engineering specialization. (Q2A questionnaire) SECPAH chiefs mentioned two practices for leads to the work division visible in Figure 59). dealing with the extreme workload. The most The second practice, more common in counties frequent is to delegate responsibilities among with large populations of persons with disabilities, team members. For this reason, in many counties, involves supplementing, at least temporarily, the team members of various specializations cover SECPAH team with specialists from other DGASPC assessments in areas outside their expertise (which services, as shown in the quote 9.5 below. 9.5 “Interview duration? We manage to get an average time of 15 minutes/applicant, because we also have the staff from the centers to help the SECPAH. Besides, in order to reduce the time, all 4 specialists of the multidisciplinary team assess a person simultaneously.” (Focus group SECPAH 1, Intervention of a specialist from the county with the largest population of people with disabilities in the country) Fewer assessed files do not necessarily reflect a 107 minutes.524 Correspondingly, the interview time lower workload. In the case of home assessments increases from 15–20 minutes to 120–130 minutes, (mandatory for the immobilized applicants), the which significantly diminishes the number of round trip to the applicant’s home significantly files that could be assessed in a day. The home increases the assessment time. The direct interaction assessments account for approximately 12 percent between an applicant and the SECPAH team lasts, of total assessed files for adult applicants in the on average, 15–20 minutes regardless of whether pre-COVID period, and decreased to 6 percent in the assessment is done on SECPAH premises 2020.525 For child applicants, the home assessments or at the applicant’s home. In the case of home have continuously represented 3 percent of all assessments, the average round trip time is around assessed files in a year. 524 With a minimum of 7 minutes, a maximum of 300 minutes, and a standard deviation of 84 minutes. Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 25 counties and 2 districts of Bucharest, January–February 2021. 525 In 2019, the share of home assessment in total assessments ranged between 0 and 35 percent in the districts of Bucharest where SECPAH also plays the role of SPAS. The standard deviation, however, was smaller than the average of 10 percent. In 2020, the number of SECPAH that do not conduct home assessments increased from two in 2019 to four. The disparities in conducting home assessments across counties have also increased. 248 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Similarly, more assessed files do not necessarily has been done since the COVID-19 pandemic. If in reflect a higher workload, as some assessments November 2019 (or a typical pre-COVID month) do not involve any face-to-face interaction with assessments based only on documents (possibly the applicant, and only involve documents or a through a combination of documents and telephone combination of document review and interviews interviews, WhatsApp or Skype) were conducted by by phone, WhatsApp, or Skype. Such assessments SECPAH in only five counties, in November 2020, protect against the spread of COVID-19 and most of SECPAHs used these types of assessment involve less time and effort. Figure 61 displays the for most applicants. dramatic change in the way disability assessment Figure 61: Share of files assessed based on the document review, possibly combined with interviews by phone, WhatsApp or Skype and that do not involve face-to-face interaction between SECPAH team and applicant, by county (% of total assessed files) 100 80 60 40 20 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 November 2019 (or a typical pre-COVID month) November 2020 Source: Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 27 counties and 4 districts of Bucharest, January-February 2021. Besides the interview or document review, file, as well as register and deliver it to the CEPAH SECPAH specialists usually spend an additional 30 secretariat.526 minutes per application file, as follows: (i) about 10 In conclusion, the workload per SECPAH minutes to draft conclusions and recommendations member has remained high, although has decreased in the comprehensive assessment report, including compared to the pre-COVID period. The drop in the recommendation for classification or non- the number of assessed files, as well as changes to classification into a degree and type of disability, practices related to conducting the assessment (by the proposal regarding professional orientation, reducing evaluations at home and proportionally and the proposal to take a protection measure; (ii) increasing evaluations based on document analysis, approximately 5 minutes to complete the PIRIS; (iii) possibly accompanied by telephone, WhatsApp or around 5 minutes to draft the PIS; and (iv) about Skype), were the main causes of this change. 10 minutes to otherwise prepare and complete the Table 12: In a standard hypothetical case of a person applying for classification in a degree and type of disability, how does the interaction with the specialists of SECPAH and, respectively, of SECC, usually unfold? SECPAH (%) SECC (%) 1. The person interacts simultaneously with a team of specialists, in a dedicated space. 29 31 2. The person interacts simultaneously with a team of specialists, in their office (with 43 39 desks, computers, files, etc.). No other persons are present. 3. The person interacts successively with a team of specialists, in a dedicated space. 5 15 4. The person interacts successively with a team of specialists, in their office; for instance, they move from one office to another for various areas of assessment. No 13 12 other persons are present in that office. 5. Other 10 3 Valid responses - (%) 100 100 - N 182 160 Source: Opinion survey Q2B: Practices and experiences of the practitioners working in SECPAH/SECC from 39 counties and 6 districts of Bucharest, January-February 2021. 526 Median values are used in this paragraph. The corresponding mean values are 15, 7, 7, and 15 minutes (Q2B survey). Chapter 9 I 249 The relatively high workload and distorted aspects is found in Chapter 4. distribution among team members (by specialization) Supervision and employees’ performance significantly affects how the assessment based on evaluation are limited to “internal control” from the medico-psychosocial criteria is performed. First, the SECPAH chief, which is done in a rather ad hoc some of the six mandatory areas527 of assessment are manner. covered only superficially, for very small groups Over two-thirds of SECPAH practitioners of applicants with specific characteristics, or are mentioned at least one problem related to human not covered at all. Second, the interview with the resources,528 usually, the need for additional applicant is conducted collectively by the SECPAH personnel. The insufficient number of specialized team or under less strict conditions of confidentiality doctors was mentioned most frequently, so as to reduce the interview time (Table 12). Those followed by the lack of psycho-pedagogues and practices negatively affect the interaction between physiotherapists. Many respondents also named assessor and applicant, making interviews more the lack of professional archivists, those specialized cold and impersonal, which also compromises the in social services, secretaries, or data entry operators quality of the information and the general quality as a problem. of the assessment. A thorough analysis of these “- We do not have an analysis of the quality of the service [SECPAH]. I do not even know 9.6 what you mean. We could do an analysis compared only to our classification proposals… We were subject to a control by the Social Inspection, and we saw that the differences were very small, we had no returned files. This is all we have. - In our county, the analysis of the service is reflected in the internal control. The head of service checks the files and makes notes about each specialist and verifies if the reports are fully completed. He also uses quarterly monitoring reports. The internal report is drawn up based on the number of files. For the internal control we have a register with monthly notes about the activity of each specialist, which I recommend as head of service, if such exist.” (Focus group SECPAH 4) 9.2.2. Training of SECPAH Personnel 2020, only about 17 percent of SECPAH personnel attended at least one training session on any topic, The second main problem mentioned in the Q2B or at least one training session intended to help opinion survey refers to insufficient training and the them understand SECPAH’s assessment function. need for lifelong learning, personal development, Moreover, trained staff are concentrated in 12 experience sharing, and team-building activities. counties, rather than being more widely distributed. “Sometimes I feel trapped in my office, buried in The main needs for training mentioned by files and daily routine. I do not see a path to develop the SECPAH practitioners are shown in Figure myself or to hear how are doing things other people, 62. Professional training either in their own in other counties, maybe we can imagine some specialization or on disability assessment were the better ways for us and for those that we serve.”529 most frequently mentioned topics. SECPAH personnel receive very limited SECPAH personnel have very limited training. In the sample of 32 counties and 4 knowledge of and training on the ICF. According districts of Bucharest, 22 SECPAH chiefs reported to the SECPAH chiefs, team members’ knowledge that their SECPAH has a continuous staff training of ICF is scored at 3.6, on average, on a scale of 1 plan. However, over the last three years, only 16 to 10, with no significant differences according SECPAH delivered a team training session for to specializations.530 Under these conditions, in better intervention and teamwork. Furthermore, in the past 12 months (2020), only 3.5 percent of 527 The mandatory areas of assessment are (i) social assessment; (ii) medical; (iii) psychological; (iv) vocational assessment of professional abilities; (v) assessment of the level of education; and (vi) assessment of the skills and level of social integration (GD no. 268/2007, Art. 48). 528 Opinion survey Q2B: Practices and experiences of the practitioners working in SECPAH (N=201) from 36 counties and the 4 districts of Bucharest, January–February 2021. 529 A SECPAH psychologist in her Q2B questionnaire. 530 With a standard deviation under 3. Notably, according to the SECPAH chiefs, only around 18 percent of total SECPAH personnel have knowledge about ICF that can be rated with scores between 7 and 10 (institutional survey Q2A_Human resources). 250 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM SECPAH personnel (or 12 out of 346 specialists), knowledge on the topic, and most are unaware of from only 3 counties (BH, MS, and VL), attended the striking change that would come from shifting a training course on ICF. Furthermore, in the the paradigm from a medical to a holistic approach. opinion survey, the SECPAH practitioners self- Therefore, raising awareness and training SECPAH assessed that the need for training on ICF is at an practitioners could be a game-changer that might average level between 7 and 8, on a scale of 1 and as well advance the reform or lead to its failure or 10. They provide similar average scores regarding reversal. They will not be able to accept or properly the need for training on ICF for the SECPAH team, use new instruments if they do not understand the CEPAH members, urban SPAS, and rural SPAS. implications of the change. Therefore, most SECPAH members lack adequate Figure 62: Main training needs for SECPAH specialists (%) Any of the below 19 81 Professional training in their own specialization 19 48 33 Professional training regarding disability assessment 19 54 27 How to communicate with persons with diabilities 19 60 21 ICF 19 62 19 Experience exchange with SECPAH from other counties 19 64 17 Changes in the legislation and how to understand/apply it 19 67 14 Stress and crisis management 19 68 13 How to use the software application for disability assessment 19 73 8 Case management 19 74 7 Personal development 19 75 6 Did not answer Provided ideas for the main needs for training but not on that specific topic Considers that specific topic a training priority Source: Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=201), from 36 counties and 4 districts of Bucharest, January–February 2021. 9.2.3. Procedures for Disability Assessment: Two groups of work procedures are insufficiently developed, even though SECPAH practitioners An Overview consider them to be very useful for daily activities. The disability assessment is not approached in a The first group contains work procedures that have uniform way across the country. At the SECPAH been developed in about a third of the surveyed level, the research carried out for this report counties and a large part of the SECPAH specialists focused on a package of 21 procedures, which were perceive them as existing, yet they also mention discussed in the previous chapters. However, Figure them among the procedures that need to be further 63 shows the most deficient areas. First, half of the developed. This group of procedures refers to studied SECPAH have 6 of these work procedures discrepancies between the assessments done by at most, and three-quarters have no more than 12. specialists outside the SECPAH and that of the Second, in most cases, the existing work procedures SECPAH practitioners,531 as well as cases suspected are sections of the general SECPAH procedure of fraud (PRO13). This group also includes the that reproduce the existing legislation without any procedure regarding training and work methods in clarification or new/specific/additional elements. multidisciplinary teams (PRO 24). Third, there are differences between the factual data reported by the SECPAH chiefs and the perceptions of the SECPAH members, but the overall patterns are consistent. 531 Namely, procedures PRO 11, 12, 16, and 17 from the legend of Figure 63. Chapter 9 I 251 Figure 63: Work procedures (% of SECPAH, % of SECPAH members, and average score of usefulness) 100 5 4.5 80 4 60 3.5 3 40 2.5 20 2 1.5 0 1 8 0 3 1 1 3 7 4 6 2 9 0 2 8 O3 O1 O2 O6 4 O9 O5 O2 O3 O3 O3 O1 O1 O1 O2 O1 O1 O2 O2 O2 O1 O1 PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR PR % SECPAH chiefs report the procedure to be available (in Q2A) % SECPAH practitioners consider that the procedure is available (in Q2B) Usefulness of the procedure for daily activities (on a scale from 1 to 5, in Q2B) Legend: Approved work procedure regarding … PRO1. Information of persons requesting classification into PRO16. For cases where the evaluation in the a degree and type of disability psychological clinician’s report does not match the PRO2. Submission and registration of application files for evaluation of the SECPAH psychologist disability assessment PRO17. For the situations when the psychological PRO3. Ensuring personal data protection assessment has vague or unclear conclusions PRO5. Initial verification of the application files submitted PRO18. Vocational assessment and professional skill for disability assessment assessment PRO6. Social assessment PRO20. Assessment of the level of education PRO9. Medical assessment PRO22. Assessment of the social skills and integration level PRO11. For cases where the evaluation from the specialist PRO24. Training and working methods in multidisciplinary physician’s report does not match the SECPAH physician’s teams assessment based on the documents contained in the file. PRO28. Activities undertaken with the children and PRO12. For cases where the medical documents parents, in relation to the transition to the adult life submitted to the file are conflicting or ambiguous PRO29. Certification of the type of disability PRO13. For the situations where it is found that the PRO30. For situations in which upon consultation for PIRIS medical documents submitted to the casefile are the applicant does not agree with their representative suspected to have been counterfeited (suspicion of fraud) PRO31. Drafting the PIS PRO14. Psychological assessment PRO33. Implementation of PIS and the steps to be taken in the cases where it is not performed Sources: (For the dark blue bars) Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January-February 2021. (For the yellow bars and the purple line) Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=201), from 36 counties and 4 districts of Bucharest, January-February 2021. The most deficient areas, however, comprise the life. Besides lack of procedures, the same areas - work procedures that are severely underdeveloped, transition from childhood to adulthood and the PIS referring to transition from childhood to adulthood and PIRIS - resulted as being the most problematic and the individualized plans for intervention regarding the work instruments. Thus, the majority (PIS and PIRIS).532 The SECC representatives mentioned the following as needing to be developed also mentioned the need for a clear procedure (i) a tool to simulate for young people aged 16 for activities for 16–17 years old youths and or older, at the request of parents, the possible their parents concerning the transition to adult results of the disability assessment by applying 532 Namely, procedures PRO 28, 30, 31, and 33 from the legend of Figure 63. 252 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM the medico-psychosocial criteria for adults; (ii) a 9.2.4. SECPAH’s Data Management and specific template to prepare PIS, which to be applied Information System uniformly at national level either for all adults with disabilities or for certain categories with clearly SECPAH does not have an information system, defined characteristics; and (iii) a methodology to and its processes are not automated. Most activities monitor progress in implementing the services and connected with the disability assessment are activities recommended in PIS/PIRIS. paper-based. In many counties, rigorous data The top three obstacles to SECPAH performance about the registration and initial verification of the are (i) demotivating salaries in SECPAH; (ii) application files are recorded in paper registries, insufficient personnel, both in terms of number of which are not available in electronic format. Data staff, unsatisfactory professional training, and/or about dropout and exits from the system are not lack of certain specialties; and (iii) inappropriate available (see Section 3.1). The use of technology working instruments and procedures.533 Hence (telephone, electronic mail) to communicate with better work procedures and instruments could be applicants considerably increased in 2020, due to perceived as improving the system’s performance. the COVID-19 pandemic (see Figure 61), yet at the However, these efforts should be accompanied by national level the process still heavily relies on face- improvements at the staff level. to-face interactions and the applicants’ repeated visits to various desks. 9.7 “I can honestly say that I am happy that this pandemic came because it forced us to go online. Otherwise, another 1,000 years would have passed in Romania for us to do what we can now do with you and send online.” (Interview with an NGO representative, Bucharest) In our sample, 23 counties and 2 districts of secretariat manages and stores the files,536 which Bucharest have an approved procedure to protect increases the workload in terms of handling and personal data (or a paragraph/chapter about loading files (from registration to assessment, this in the general procedure).534 Out of those from assessment to the CEPAH secretariat, from procedures, only a part covers safe handling and commission to storage, within storage, and so forth). archiving of files (18 counties and 2 districts of Software applications that automate key Bucharest) or organization, storage, and security functions and processes are nonexistent, and most of data electronically (18 counties and 1 district activities related to beneficiary data management or of Bucharest). All SECPAH keep copies of the data validation and cross-checking are performed application files, but only a few have transferred manually. As mentioned, the EU-Funded National and stored these in electronic format,535 while the Disability Management System currently others store them in paper format. In most counties, implemented by ANDPDCA aims to address this SECPAH alone or in cooperation with the CEPAH specific gap.537 533 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=192 valid responses), from 36 counties and 4 districts of Bucharest, January–February 2021. 534 Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January–February 2021. 535 One district of Bucharest and seven counties. 536 In counties with larger populations of people with disabilities, the management and storage of files are usually carried out by a different DGASPC service, such as Archive. 537 The general objective of the project is to develop and implement a centralized national platform for the collection, storage, and distribution of information on people with disabilities (adults and children) to central and local public authorities, individual beneficiaries, and institutional partners. For more information, see http://anpd.gov.ro/web/wp-content/uploads/2019/10/ ANUNT-WEB-final-ANPD-v2.pdf Chapter 9 I 253 9.8 “A complex Intranet is missing. The Intranet is absolutely essential. That is how things work. All the services have access to certain information about X, Y and Z and the services communicate in a specific manner about common aspects, so it is missing, we are now stranded.” (Interview with a DGASPC director) One district of Bucharest and 22 counties • 6 counties do not enter any information, either benefit from a software application for disability automatically or manually assessment, namely D-SMART538 or ASSYS. Versions • 5 counties manually enter all information of this software vary across counties, as do the • 9 counties and 1 Bucharest district manually number and type of facilities and modules available enter selective information, and the selection (counties with a lower budget purchased more differs from county to county limited versions). The software includes modules • 2 counties did not answer for each of the six mandatory areas for assessment. • There is no county where the social inquiries to be The reporting module includes the comprehensive submitted electronically and to be automatically assessment report and the individualized plans for uploaded into the assessment software. intervention, which are automatically generated. Similar discrepancies are registered for all types However, only some counties purchased the of information in the disability assessment. The reporting module. least recorded data in the assessment software Data entry is manual. The data that is entered application refer to the applicant’s plans, fears, into the software varies from county to county. For hopes, or wishes about the life he/she wants to example, only in some counties, the specialists’ live. Only 5 counties enter such information, and interview notes are entered in the assessment the available data are randomly selected (according software, while in others only the comprehensive to the assessor) and scattered across the existing assessment report conclusions are entered.539 To modules. No county analyzes this data, which reduce the assessment time per file, in the case of would be very difficult to do. assessments on SECPAH premises, it is common to Nearly all surveyed SECPAH declare having enter data during the interview, in the presence of “a comprehensive database” of adult citizens with a disability certificate living within their county.544 the assessed person.540 Each specialist enters their Based on information from those databases, 29 notes.541 Data entry adds approximately 17–19 counties and 2 districts of Bucharest report being minutes to the assessment time, per file.542 able to reconstruct an applicant’s history of applying In the existing assessment software applications, for disability (re)assessment. there are substantial differences between counties The quality of data in the existing databases is regarding the kind of data that is recorded. For rather poor. Table 13 is an illustration based on an example, from the standard framework model of analysis of nonresponses for a few selected variables. the mandatory social inquiry, data on autonomy Most of the existing databases are merely lists with and functional status of the person and assessment only a few characteristics that allow very limited of the sensory and psycho-emotional status of the data exploration. Most counties do not record the person are treated as follows:543 applicant’s age (or use predefined categories) so cannot provide data for the category 18–26 years, 538 Disability-Single Management, Assessment and Reporting Tool, version 7.21.01.15(301/2140). 539 Out of the 23 SECPAH that have an assessment software, 16 enter the interview notes from the assessments on SECPAH premises, while 7 enter only the conclusions for the comprehensive assessment report. In the case of home assessments, only 14 counties enter the visit notes. 540 Regarding the home assessments, data entry of the visit notes is most often done the next day, before commencing another assessment. 541 In only one county, a data operator collects the interview notes from all specialists and enters the data. 542 With a minimum of 10 minutes, a maximum of 30 minutes, and a standard deviation of about 6–7 minutes. 543 As per GD no. 430/2008 (Annex 6). 544 One county does not have such a database. Another county did not answer. 254 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM which is relevant to the transition from childhood assessment (on premises, home assessment, etc.), to adulthood. Most counties do not have a unique are not systematically recorded. Even the outputs database consolidating all information to trace of the assessment cannot be analyzed according applicants from entry to exit. Instead, the common to these three variables to observe the aspects that practice is to collect pieces of information in various distort the process and need to be corrected. For this phases, by various people, and in varied formats. reason, the available data allow only an indicative Data on inputs (application files) are very few and general view of the assessment process, including its usually recorded on paper. The type of assessment inputs, phases, and outputs. At the same time, most (first during lifetime, reassessment regular or at the of the existing databases neither support nor reflect request), as well as the method of conducting the the daily operation and SECPAH administration. Table 13: The quality of data from the SECPAH/CEPAH databases using selected variables Non- Valid Data for responses responses … Total number of Q2A_SECPAH questionnaires 36 INPUTS Applications total 0 36 Nov-20 Applications by types – first assessment, regular reassessment, or 8 28 Nov-20 reassessment at the applicant’s request for worsening situation Applications for youth 18-26 living in the special protection system 17 19 Nov-20 Applications for youth 18-26 living with family 18 18 Nov-20 PROCESS First assessments – total 9 27 2020 First assessments – carried out on SECPAH premises 13 23 2020 First assessments – carried out at applicant’s home 12 24 2020 First assessments – carried out in medical facilities 7 29 2020 Total number of Q3A_CEPAH secretariat questionnaires 24 OUTPUTS Assessed files transmitted to CEPAH secretariat – total 1 23 2020 Assessed files for people at their first assessment - total 14 10 2020 Assessed files for people at their first assessment – 18-26 years old 18 6 2020 Assessed files for people at their first assessment – 27+ years old 18 6 2020 Sources: (i) Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January–February 2021; (ii) Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH secretariat (N=24), from 22 counties and 2 districts of Bucharest, January–February 2021. Most SECPAH use assessment data to draft an strategies and identify needs for social services. annual or quarterly monitoring and evaluation A few of them (10 counties) also make available report.545 However, only 7 counties publicly public statistics on people with disabilities. Also, disseminate this report. More generally, less than very few (5 counties) involve the representatives of half (one district of Bucharest and 15 counties) use persons with disabilities to analyze collected data data to document public policies relevant to persons and define policies. with disabilities, especially to prepare county 545 Out of the sample of 32 counties and 4 districts of Bucharest, 16 produce an annual monitoring and evaluation report, 7 quarterly, 3 biannually, 3 make it “whenever needed,” and 7 not at all (institutional survey Q2A). Chapter 9 I 255 9.2.5. Material Resources According to the SECPAH chiefs (in Q2A), most counties have a dedicated, confidential space in which to conduct assessment interviews (29 counties and 4 districts of Bucharest).546 Additionally, 66 percent of the SECPAH team members report insufficient space for offices; almost 70 percent complain of a severe lack of storage space, and 30 percent express dissatisfaction with existing computers and equipment.547 Anecdotally, it took about 40 minutes to solve technical issues related to organizing a focus group with a SECPAH team, due to poor equipment (obsolete computers or those with nonfunctional cameras or microphones, lack of or poor Internet in some offices), and lack of space (offices too small to accommodate several people). In the end, the focus group was carried out using team members’ personal smartphones. In the case of assessments on the SECPAH premises, applicants must wait in line before the interview for about 25 minutes, on average.548 Under these circumstances, it is relevant that nearly all SECPAH are endowed with waiting rooms that allow for distancing, have seats, and accessible toilets, but water dispensers are available in only 61 percent of the surveyed SECPAH.549 9.3. CEPAH: Commission for Assessing Adults with Disabilities In Romania, 47 CEPAH evaluation commissions based on the information provided by these two operate in all 41 counties and 6 districts of institutional surveys, plus the Q3B opinion survey Bucharest. CEPAH are specialized bodies attached that collected the views of CEPAH members from to the County and Local Council of the Bucharest 24 counties and 2 districts of Bucharest. districts. The Q3A institutional survey collected data about CEPAH activity and human resources; 9.3.1. CEPAH’s Human Resources data regarding the CPC were not included. In addition, the Q3C survey gathered data about the Within the delivery chain, CEPAH is the key actor CEPAH secretariat and the results of the disability that determines degree and type of disability (core determination process. The following sections are phase 4). CEP 546 In the opinion survey (Q2B), in 7 counties and one district of Bucharest, the SECPAH practitioners provided inconsistent opinions regarding the existence of a dedicated space for the assessment interviews. In these counties, some practitioners consider that a dedicated interviewing space is available, while the others report that it does not exist. 547 Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=197), from 36 counties and 4 districts of Bucharest, January–February 2021. 548 Almost 60 percent of the SECPAH report that the applicants usually must wait in line before the assessment interview. The waiting time varies considerably, from a minimum of 3 minutes to a maximum of 240 minutes, and a high standard deviation of 42 minutes. Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=185), from 36 counties and 4 districts of Bucharest, January–February 2021. 549 Within the sample, only one SECPAH does not have a waiting room furnished with seats, four do not have an accessible toilet, and six have waiting rooms too small to allow social distancing. Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), from 32 counties and 4 districts of Bucharest, January– February 2021. 256 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM AH also has the final decision regarding the benefits completed social-medical management courses. and service package included in the PIRIS (core Besides the president, the CEPAH teams have at phase 5). Along with its secretariat, CEPAH also least one psychologist and a social worker, as well plays a significant role in responding to the courts’ as a specialized doctor appointed by the County requests and implementing the courts’ decisions Direction of Public Health (usually a family doctor related to appeals and grievances against the or general practitioner) and an NGO representative disability certificate (core phase 6). who advocates for people with disabilities. In the opinion survey,552 the CEPAH members CEPAH size and structure (presidents and members) consider there to be enough members to sufficiently serve those who In the Q3A survey, 19 counties and one district apply for a disability classification. Only respondents of Bucharest provided data about the CEPAH from one county think there are not enough CEPAH members. All surveyed CEPAH comply with the staff. Similar opinions are expressed regarding the current regulations.550 They comprise 5 members, CEPAH composition by specialization. Apart from but a few have 4 or 6 members.551 In most cases, the representatives of one county, all the others the president is a specialized doctor in family think that the types of specialties under CEPAH are medicine, general practitioner, or is a specialist with well suited to serve people who annually request medical expertise in work capacity (Figure 64). All classification. CEPAH presidents interviewed declared that they Figure 64: CEPAH human resources by profession and position within the commission (number of persons) 24 16 17 12 8 6 4 5 2 1 2 2 2 0 0 0 0 0 Specialist Specialist Family doctor General Doctor* Psychologist Social worker Others Did not doctor in internal practitioner respond in work medicine capacity President Members Source: Institutional survey Q3A: Facts and indicators regarding the activity of the commission for assessing adults with disabilities (CEPAH), from 19 counties and 2 districts of Bucharest, January-February 2021. Note: *Did not provide information about the specialization. The sum of bars is 101 CEPAH members. Nevertheless, in the view of a paradigm shift with medical expertise in work capacity or in from a medical to a holistic approach, the current physical and rehabilitation medicine (PRM) (see combination of technical expertise is not aligned Figure 64 and Section 9.2.1). More such specialists with the ICF, both at the CEPAH and SECPAH would help improve the use of the comprehensive level. Family doctors and general physicians assessment tools, and make better services/benefits predominate, while there are very few specialists recommendations to persons with disabilities. 550 Law no. 448/2006, Art. 85(4) and GD no. 430/2008. 551 Two of the 20 CEPAH have six members (AG and MM), while one has four members. 552 Opinion survey Q3B: Practices and experiences of the CEPAH members (N=65), from 24 counties and 2 districts of Bucharest, January–February 2021. Chapter 9 I 257 Reasons to include physicians The ICF also constitutes a good model for rehabilitation strategies. The dimensions of the ICF can also refer to distinct specialized in physical and targets or outcome measures for rehabilitation. The “body structure/impairment” can correspond to the possibility of rehabilitation medicine (PRM) stimulating the undamaged structures with a technique or a treatment stimulating plasticity capabilities. The “body in CEPAH and SECPAH function/impairment” can refer to the recovery of a function such as strength, coordination, or dexterity in the case of motor function; discrimination or identification in the case of sensory function; and planning, verbal comprehension, The model known as “functional” focuses not on the disease but on the memorization for cognitive functions. The “activity/limitation” patient, describing the functioning limitations and environmental factors can refer to the reduction of the disability and the possible (personal and environmental). This is precisely the paradigm of interest generalization of functional recovery to other activities, and to PRM physicians, since the focus of the intervention is not merely the the enhancement of activity limitation by compensation. etiological reason for disease but its impact on an individual’s functioning. This model is more relevant to the description and analysis of chronic conditions and their treatment because it considers the situation of disability as a mismatch between an individual, the environment, and its personal projects. Therapeutic interventions do not aim to cure the The “participation/restriction” corresponds to the patient only by treating the disease and impairments but also by limiting reduction of the disadvantage by social interventions activity and restricting participation. Therefore, the actions of PRM focus on based on recognition and inclusion considering three targets: (i) the individual, by promoting not only the repair process personal and environmental factors. The “contextual (disease and impairments) but also the compensatory processes (intrinsic, factors” and their possible role of facilitators and/or compensation developed by the individual; or extrinsic, with external barriers, must be considered. In the context of ICF, it devices); (ii) the environment (physical, personal, professional, etc.); and (iii) must also be considered that the development of the individual projects (education, work, personal and social life) that will be capacity does not necessarily correspond to the final modified and adapted. performance of the patient, that should in any case be the end of the PRM action. The medical specialty of PRM has adopted the ICF developed by the WHO. This classification includes a new approach to persons with disabilities relying on a multidimensional approach. An example of the application of this approach is the identification of a lesion (etiology) using modern imaging techniques that allow practitioners to see details of the injured tissue and identify undamaged structures that could be used for rehabilitation. For the PRM physician, the challenge is to consider these findings to propose rehabilitation methods that could favor plasticity and regeneration. The This multidimensional approach to second aspect is the assessment of different body structures and functions the disease and its consequences for using the clinical examination and selective assessment scales. For the PRM diagnosis, treatment, and rehabilitation physician, one objective is to measure the severity of the impairment and to reinforce the acceptance that PRM make precise correlations between impairments and underlying lesions. This may be considered as a medicine of anatomic-clinical approach is particularly important in musculo-skeletal and the “whole human” complementing neurological disorders, as well as cognitive losses due to focal lesions. The third the medicine or specialties of organs. aspect is the assessment of limitations in activity. This is at the core of PRM, which considers the remaining abilities of a person with disabilities to be more important than impairments in body structures and functions. This is a more positive vision relying on the activity itself. The fourth level corresponds to the assessment of social consequences of the injury or disease. In this context, the previously used terms “disadvantage” and “handicap” have been replaced with the more positive term “participation,” placing the patient in the context of his/ her personal, professional, and social life. Source: European Physical and Rehabilitation Medicine Bodies Alliance (2018). 258 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Chapter 9 I 259 Profile of CEPAH members member due to absences. Correspondingly, the turnover of members is not perceived as a problem The 20 CEPAH included in the sample that provided (within the Q3B opinion survey). data about their human resources have a total of 101 members. Women predominate among the CEPAH The NGO representative within CEPAH members (71 percent), with a university degree or In all surveyed counties, CEPAH includes an NGO postgraduate studies,553 and have between 1 month representative as a member.557 These are social and over 20 years’ experience within CEPAH.554 workers or have other specializations (such as law, CEPAH is a decision-making body for military studies, or high school graduates), with classifying adults by degree and type of disability. high stability, participating in the commission for The average CEPAH member’s experience—of more than 9 years, on average.558 about 7 years—indicates that most commissions In some counties, applicants with types of have stable teams that carry out the decisional impairments other than visual or auditory do not activities. In the past four years (2017–20), 17 of benefit from representation within CEPAH. In the 24 CEPAH participating in the Q3A survey just 9 counties (out of 24), the CEPAH frequently modified their nominal membership. Modifications collaborates with an NGO representing or to the commission’s composition were rare, and did advocating for persons with disabilities, usually not occur according to a pattern (like every year or the county subsidiary of the association of the every two years).555 Also, changes to the CEPAH blind or deaf. However, all CEPAHs studied have a nominal membership may occur through the representative of the NGOs as a member. According application of the regulations according to which to the CEPAH presidents, the NGO representative the members who fail to attend two consecutive has “the same responsibilities as any other meetings without good reasons must be replaced.556 member.” Yet, cases have been reported in which This regulation is not applied in 7 (out of 24) the NGO representatives limit their involvement counties, while in the other counties no unexcused within the CEPAH to applicants with the type of absences were recorded during the 2017–20 period. disability served by that specific NGO (such as only So, there was no replacement of any CEPAH those with visual impairments, or only the deaf). “Participates in meetings, expresses viewpoints about the degrees of disability and the 9.9 PIRIS, signs the certificates and the PIRIS.” “Fulfills tasks common to the members, as provided by law, notifies cases subject to debate before the CEPAH, popularizes the activity of the committee at community level and that of the organizations having made this proposal, monitors the observance of the rights of persons with disabilities.” “Representation of the members of the association [of the blind] and only them.” “Represents the rights of persons with disabilities in general and, in particular, those of persons with hearing impairments, being also authorized as a sign language interpreter.” (Excerpts from Q3A questionnaires) 553 Out of the 101 CEPAH members, 52 completed a faculty degree, 42 completed a master’s degree or doctorate, 3 completed high school, and 4 did not answer. 554 The average experience within CEPAH is 82 months, with a standard deviation of 62 months. 555 Out of the 17 CEPAH, 8 changed only one time in the past four years one or more members, 5 modified twice, and 4 altered three times their composition through a County or Local Council decision, respectively, of the Bucharest district, as per GD no. 430/2008, Art. 8(2). 556 According to GD no. 430/2008, Art. 9. 557 As per Law no. 448/2006, Ch. VII, and the implementation guidelines dated March 14, 2007, for the implementation of the provisions of Law no. 448/2006 on the protection and promotion of rights of persons with disabilities, Art. 54(1), 54(2), and 55. 558 A value of 111 months, with a standard deviation of 86 months. Institutional survey Q3A: Facts and indicators regarding the activity of the commission for assessing adults with disabilities (CEPAH), from 19 counties and 2 districts of Bucharest, January–February 2021. 260 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM In the opinion survey Q3B,559 over 80 percent of role confusion and forget that they should foremost CEPAH members declared to know how the NGO watch and guarantee the observance of the rights representative is appointed within CEPAH. In most of persons with disabilities and to make sure that cases, “he/she is simply appointed by the County their voices are heard.”563 All CEPAH presidents Council.” About half of those think this mechanism say (in the Q3A institutional survey) that there has should be maintained. The other half think it should never been a case in which the NGO representative be changed, for example, by using some objective from CEPAH reported a case of rights violation selection criteria, an open process of selection, or an in the disability determination process, for which annual rotation system involving the various NGOs other NGOs needed to be involved to solve or that operate within the county. remedy the situation. This means either that the Also, over 85 percent of CEPAH members say decision-making process works perfectly or that the they know the specific role and responsibilities representation mechanism is not working at all. that the NGO representative currently has within CEPAH. Furthermore, 73 percent consider the NGO CEPAH workload representative in CEPAH to adequately represent Regarding the CEPAH workload, Figure 65 and promote the rights of persons with disabilities shows there is no correlation between the total in their county (providing an average score of 8.3, number of files to be assessed and the total number on a scale of 1 to 10).560 Nevertheless, almost half of CEPAH meetings (ordinary and extraordinary) believe that the specific allocation of roles and for conducting the disability determination process. responsibilities should be kept as they are, whereas Accordingly, irrespective of the number of files, the the other half would change the role of the NGO total number of CEPAH meetings varies between 4 representative in two ways: by (i) introducing “an and 21 per month, both in the pre-COVID period express procedure for reporting the cases of breach and in 2020, as the analysis in Chapter 5 shows.564 of rights or problems, especially those that should CEPAH members (including the president) are lead to changes to the regulations in force;”561 or entitled to a sitting allowance equivalent to 1 percent (ii) selecting only social workers enlisted in the of the County Council president’s allowance,565 Romanian Social Worker National College from which varies substantially across counties; for NGOs accredited to provide social services.562 example, between 100 lei (in GL and HD) and 187 Most interviewed NGOs point out that the lei (in DB). It appears that randomly increasing mechanism for appointing the NGO representative the number of meetings only deepens the existing is not transparent. Some do not even know who the discrepancies, as shown in Table 14. NGO representative in their county is. In their view, the NGO representatives in CEPAH “tend to make a 559 Opinion survey Q3B: Practices and experiences of the CEPAH members (N=65), from 24 counties and 2 districts of Bucharest, January–February 2021. 560 With a standard deviation of 2.2. Opinion survey Q3B: Practices and experiences of the CEPAH members (N=48 valid responses), from 24 counties and 2 districts of Bucharest, January–February 2021. 561 Excerpt from a Q3A questionnaire. 562 The other half of CEPAH members consider that the concrete role and responsibilities of the NGO representative within CEPAH should be kept as they are at the moment. 563 Interview with a national NGO. 564 With an average of 11 meetings in November 2019 and 10 meetings in November 2020. 565 Law no. 136/2012 for the approval of EGO no. 84/2010 that completes and modifies Law no. 448/2006. Chapter 9 I 261 Figure 65: CEPAH workload per month CEPAH workload in November 2019 CEPAH workload in November 2020 1200 25 900 25 800 1000 20 20 700 800 600 15 15 500 600 10 400 10 400 300 5 200 5 200 100 0 0 0 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 Total number of assessed files Total number of assessed files Total number of CEPAH meetings Total number of CEPAH meetings Source: Institutional survey Q3A: Facts and indicators regarding the activity of the commission for assessing adults with disabilities (CEPAH), from 15 counties that provided all necessary data, January-February 2021. Note: The counties are ordered according to the number of files that CEPAH had to assess in November 2019. Table 14: Comparison of monthly payments for CEPAH members, November 2020 Ordinary Sitting Payments Extraordinary Sitting Payments for Total meetings allowance for ordinary meetings allowance extraordinary (number) (lei/meeting) meetings (number) (lei/meeting) meetings (lei) (lei) County 1 4 187 748 0 187 0 748 County 2 3 187 561 1 187 187 748 County 3 4 100 400 15 100 1,500 1,900 County 4 4 100 400 15 100 1,500 1,900 County 5 4 100 400 0 100 0 400 County 6 4 100 400 0 100 0 400 Source: Institutional survey Q3A: Facts and indicators regarding the activity of the commission for assessing adults with disabilities (CEPAH), from 6 selected counties that provided all necessary data, January-February 2021. Except for the president,566 CEPAH members up to 50–60 hours per month.567 As the average have at least one full-time job aside from their number of files per meeting varies widely across activities with CEPAH. Thus, according to the labor counties (from 21 to 200), 568 CEPAH members spend regulations, they hold part-time work contracts between a mere 1.3 minutes and 9 minutes (with an of 2–3 hours per day for their CEPAH activity. average of 3.5 minutes) on evaluating a file.569 To Correspondingly, they work on CEPAH activities take decisions regarding disability classification 566 The CEPAH president is part of the DGASPC staff, without being a public servant. 567 The CEPAH presidents provided data about the number of ordinary and extraordinary meetings, the duration, and the number of files per meeting (institutional survey Q3A). In several counties, their estimations far exceeded 50–60 hours per month for meetings, which indicates that many of them have performed this exercise for the first time with this research. 568 The average number of files per meeting varied widely from 25 to over 250 in November 2019 and from 21 to almost 200 in November 2020. The average number of files per meeting was determined as the number of assessed files received from SECPAH divided by the number of CEPAH meetings. 569 The estimation is based only on the valid estimates provided by 8 (out of 24) counties. 262 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM and services/benefits in less than 5 minutes is understandable why the CEPAH solutions are the extremely hasty, given that files contain many same as the SECPAH recommendations for over 90 hard copy documents. Due to this workload, it is percent of the application files. “County 1: The workload is very high, we have 800-900 files/month, we have 2 meetings/ 9.10 week. Of 3 hours. Files cannot be examined only during these meetings. Everyone examines the files, but in order to cope with the workload, I, as president, being here for 8 hours/day, examine the files. With regard to everything that is special, I discuss with my colleagues. We have many files returned to the SECPAH. After we see the files, a decision is made, and the secretary of the committee types it and the files are then passed to each member for signing. In the case of contradictory opinions, we have constructive discussions, especially about the files on mental illnesses and then we discuss with the psychologist, with SECPAH, we reach a conclusion. We take the arguments beyond the emotional sphere and we make the decision on the spot. We also have working meetings with SECPAH, usually one meeting per month.” (Focus group CEPAH 1) 9.3.2. Training of CEPAH Members and engage in team-building activities. In their opinion, the need for ICF training is an 8-9 (on a CEPAH members receive extremely limited scale of 1 to 10), not only for them but also for the training. In the sample of 24 CEPAH, only 2 counties SECPAH teams, as well as for urban and rural SPAS. have a continuous training plan for members. In The weak collaboration between the CEPAH the past three years (2018–20), only one CEPAH and NGOs representing people with disabilities organized a team training session about the (only 9 counties out of 24 frequently collaborate collaboration between commission members, its with an NGO) has been discussed. Furthermore, in functioning and duties, and only 2 CEPAH held a terms of knowledge transfer, only half of CEPAH team training session about handling specific cases. members are familiar with analyses, reports, and Out of 120 members in the 24 surveyed CEPAH, dissemination activities that NGOs have developed only 8 specialists (from 4 counties) participated about protecting people with disabilities and in at least one training session about using the recommending measures to improve their living medico-psychosocial criteria, only 2 persons (from conditions, in the county or at the national level. 2 counties) took part in a practice exchange, and However, even the informed members consider only 10 members (from 5 counties) participated in that such activities have been of little relevance and training on the UNCRPD. In 2020, only 7 CEPAH usefulness for the CEPAH activity (an average score members from 3 counties benefited from at least below 5, on a scale of 1 to 10).571 one training session of any type. CEPAH staff have limited knowledge of the 9.3.3. CEPAH Secretariat modern approach to disability and the ICF. Out of 120 members, only 8 (from 8 counties) have ever The CEPAH secretarial work is carried out by participated in ICF training. According to CEPAH DGASPC staff.572 In two counties there is no members’ self-assessment, their knowledge about CEPAH secretariat, whereas in the other counties UNCRPD ranks a 7.7 and about the ICF is 5.8, on a it is comprised of 1–9 persons appointed by the scale of 1 to 10.570 Also, in the Q3B opinion survey, DGASPC director. The number of personnel in the CEPAH members define insufficient training as the CEPAH secretariat is not correlated with either main problem, especially about ICF, UNCRPD, and the size of the country’s registered persons with how to use the medico-psychosocial criteria, and disabilities population, the number of application mention as a priority the need to share experiences files for evaluation, or the number of practitioners 570 With standard deviation values of 1.6 and 2.5, respectively. Opinion survey Q3B: Practices and experiences of the CEPAH members (N=55 valid responses), from 24 counties and 2 districts of Bucharest, January–February 2021. 571 Opinion survey Q3B: Practices and experiences of the CEPAH members (N=65), from 24 counties and 2 districts of Bucharest, January–February 2021. 572 Law no.136/2012 for the approval of EGO no. 84/2010 that completes and modifies Law no. 448/2006 / Art. 8, para. 4, GD no. 430/2008. Chapter 9 I 263 employed in SECPAH (see Figure 66). At the same the list of beneficiaries of a disability certificate to time, some CEPAH presidents think a secretariat the payment agencies immediately after issuing the of 1–3 persons is sufficient for the commission’s disability certificates. Depending on the county, the efficient functioning, while others consider it too secretariat also administers the database (software small to properly function. application), communicates with the statistical The CEPAH secretariat has duties both in relation offices from various institutions, enters data in to the applicants/beneficiaries and the commission, the National Electronic Registry (of ANDPDCA), as already mentioned in Section 1.2.1. Regardless of manages the mail, answers petitions and the number of personnel, in half the counties, the notifications, and archives and stores beneficiaries’ CEPAH secretariat has additional duties. They send files. Figure 66: The number of personnel of the SECPAH and the CEPAH secretariat in selected counties, by the CEPAH presidents’ satisfaction * with the number of personnel of the secretariat Satisfied with the number of CEPAH Secretariat personnel Unsatisfied 15 14 14 11 11 9 9 7 7 7 6 6 6 6 6 6 6 5 5 5 5 5 5 4 4 4 4 4 3 3 3 3 3 2 2 2 2 2 1 1 1 1 0 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 Number of SEPAH personnel Number of CEPAH Secretariat personnel Sources: (i) Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH), January–February 2021; and (ii) Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH secretariat, January- February 2021. Note: The graph shows the situation in 22 selected counties that provided all necessary data. * Satisfaction = The president of CEPAH and/or the CEPAH secretariat responded that the existing personnel is sufficient in number for the efficient functioning of the CEPAH secretariat. Dissatisfaction = secretariat is reported to be understaffed. 9.3.4. Procedures for Disability CEPAH have none of the considered procedures, while another 50 percent have 1–3 of those Determination: An Overview procedures. Second, in most cases, the existing There is no unified approach to disability work procedures are sections of a general CEPAH determination across the country as the procedure that reproduce the existing legislation determination-specific working procedures are without any clarification or new/specific/additional developed in very few counties (see Chapter 5). At elements. Third, there are differences between the the CEPAH level, the research carried out for this factual data reported by the CEPAH presidents and report has focused on a package of 11 procedures,573 the perceptions of the CEPAH members, which which were discussed in the previous chapters. indicates that most CEPAH members have very The overview presented in Figure 67 reveals the limited knowledge of their work procedures. most deficient areas. First, 30 percent of the studied 573 A 12th procedure about issuing a disability certificate to apply the provisions of Art. 58 or 59 in Law no. 263/2010 on the public pensions system was also included in the Q3A questionnaire but not in Q3B. 264 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 67: Work procedures (% of CEPAH, % of CEPAH members, and average score of usefulness) 70 5 60 4.5 50 4 3.5 40 3 30 2.5 20 2 10 1.5 0 1 PROC8 PROC9 PROC5 PROC3 PROC7 PROC11 PROC4 PROC1 PROC10 PROC6 PROC2 % CEPAH presidents report the procedure to be available (in Q3A) % CEPAH members consider that the procedure is available (in Q3B) Usefulness of the procedure for daily activities (on a scale from 1 to 5, in Q3B) Legend: Approved work procedure regarding … PROC6. The manner of classification by degree and type PROC1. The way files to be discussed in a certain CEPAH of disability meeting are determined PROC7. Regarding situations in which the CEPAH PROC2. Ensuring personal data protection members disagree about the classification by degree and type of disability in a case PROC3. Regarding situations in which the assessment in specialized physician report does not match the assessment PROC8. The participation of applicants in CEPAH of the physician(s) in CEPAH based on the documents meetings contained in the file PROC9. For situations in which upon consultation PROC4. Regarding situations in which medical documents for PIRIS the applicant does not agree with his/her have either vague or unclear conclusions/diagnoses or representative inconsistent conclusions/diagnoses (when asked for or PROC10. The admission in residential or day centers of when two or several reports are provided by different individuals with certificates valid for 1 or 2 years specialized physicians) PROC11. The implementation of PIRIS/PIS and what to PROC5. Regarding the situation in which CEPAH members do if it is not implemented have suspicions about the accuracy of medical documents Sources: (For the dark blue bars) Institutional survey Q3A: Facts and indicators regarding the activity of the commission for assessing adults with disabilities (CEPAH), from 22 counties and 2 districts of Bucharest, January-February 2021. (For the yellow bars and the purple line) Opinion survey Q3B: Practices and experiences of the CEPAH members (N=65), from 24 counties and 2 districts of Bucharest, January-February 2021. In the case of CEPAH, most of the considered mostly in paper format. Only three counties have procedures are perceived as useful and would need at least some of the documents in electronic format. to be developed. According to CEPAH members, The CEPAH secretariat registers and manages the somewhat less important seem to be only the files during the disability determination phase. procedure regarding applicants’ participation in Once CEPAH decides, the secretariat issues the CEPAH meetings (PROC8) and the procedure disability certificate to applicants (either they for situations in which, upon consultation for received classification or non-classification into a PIRIS, the applicant does not agree with his/her disability degree). After the disability certificates representative (PROC9). are released, either the CEPAH secretariat (in 60 percent of the counties) or SECPAH (in 40 percent 9.3.5. CEPAH’s Data Management and of the counties) manages and archives the files. Information System Thus, the entire process is paper based. At the end of this process, only 4 counties (MH, DJ, TL, and After SECPAH finalizes the disability assessment, GJ) have all the documents transferred and stored application files are transmitted to CEPAH for electronically. Also, only about half the counties disability determination. In all counties, files are have an approved procedure (or paragraph in Chapter 9 I 265 the general procedure) to ensure personal data is and the CEPAH secretariat; and (iii) over half the protected (PROC2 in Figure 67). counties have software that is used exclusively by Data management is highly fragmented, SECPAH or the CEPAH secretariat. D-SMART is the not only between but within counties. In most most popular software that is based on manual data counties, CEPAH shares with SECPAH the same entry. The National Electronic Registry is just one “comprehensive database” of adult citizens with dataset in which each county should enter selected a disability certificate living within their county. data, and not a working instrument for SECPAH/ Nevertheless, in three counties, CEPAH and CEPAH. SECPAH hold separate databases, while in others The quality of data in the existing databases only SECPAH (or only CEPAH) record data in is rather poor. Out of 47 CEPAH in Romania, the such a database. Further, regarding the software secretariats of 27 CEPAH responded to the Q3C application, by consolidating the data reported in survey,574 which asked a series of interrogations the three institutional questionnaires (Q2A, Q3A, of the county database. There were a significant and Q3C), findings show that: (i) about 15 percent number of nonresponses. Below are several of counties lack software for disability assessment examples of indicators that cannot be extracted in and determination; (ii) approximately a third of most counties. counties have software that is used both by SECPAH Indicator: In your county/district, according to the records of the CEPAH secretariat, Answers can be which was for November 2020 the … found in … Total number of Professional Orientation Certificates issued? 8 counties Number of disability certificates issued for male/women from rural/urban areas? 11 counties Number of disability certificates issued for people from rural/urban areas with a validity 10 counties period of 1 year, 2 years, or permanent? Number of disability certificates issued for people 65+ years old? 18 counties Number of disability certificates issued for male/female 65+ years old? 15 counties Number of disability certificates issued for people 65+ years old living in rural/urban areas? 8 counties Number of disability certificates issued for young people 18-20 years old? 17 counties Number of disability certificates issued for male/female 18-20 years old? 15 counties Number of disability certificates issued for people 18-20 years old living in rural/urban 9 counties areas? Total number of disability certificates issued for individuals with protective action 6 counties irrespective of the type of placement service (centers, protected housing, etc.)? Number of disability certificates issued for people with disabilities living with family, from 1 county urban/rural areas? Number of disability certificates issued for men/women with disabilities living with family? 2 counties Number of disability certificates issued for people with disabilities of any age group living 2 counties with family? Number of disability certificates issued for people in prison? 3 counties Number of disability certificates issued for individuals hospitalized in psychiatric facilities? 2 counties Number of disability certificates issued for homeless people? 0 counties Number of disability certificates issued for people who cannot move? 0 counties Number of disability certificates issued for individuals under public guardianship (who are covered by a court judgment on judicial protection of incapable adults, which appoints 0 counties the local authorities as guardian)? 574 Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH secretariat, from 25 counties and 2 districts of Bucharest, January–February 2021. 266 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The CEPAHs use the data collected through 9.3.6. Material Resources assessments less than SECPAH. Over 80 percent of CEPAH draft an annual or quarterly monitoring From the CEPAH secretariat’s point of view, there report, but only 20 percent of them make it public.575 is sufficient office/space and enough computers;576 Also, less than a fifth uses the data to document more printers and office supplies are needed. Half relevant public policies for persons with disabilities of the interviewed CEPAH members report the need or to identify needs for social services. In other for a larger space for the commission meetings, words, only a small part of the information is as well as more computers, printers, and data available in electronic format, while the rest of the entry operators.577 In seven counties, applicants/ documents and reports cannot be easily found. beneficiaries can consult their files, on request, They do not involve the representatives of persons after CEPAH finalizes the assessment, but only two with disabilities in the analysis of collected data. counties benefit from a space dedicated to this aim. 575 Institutional survey Q3A: Facts and indicators regarding the activity of the commission for assessing adults with disabilities (CEPAH), from 22 counties and 2 districts of Bucharest, January-February 2021. 576 Less than a quarter mentioned those aspects as being problematic. Institutional survey Q3C: Result indicators of the disability determination process for the CEPAH secretariat, from 25 counties and 2 districts of Bucharest, January–February 2021. 577 The other half say that they have all they need. Opinion survey Q3B: Practices and experiences of the CEPAH members (N=65), from 24 counties and 2 districts of Bucharest, January–February 2021. Chapter 9 I 267 Conclusions of Chapter 9 SECPAH and CEPAH, at the county level, and SPAS, at the community level, represent the key organizational actors involved in disability assessment and determination for adults in Romania.578 SPAS: In Romania, at present, only about a third of the local authorities have a SPAS at the local level that is accredited according to law. In the urban SPAS, there are more staff involved in social work activities, with 1–10 employees in small cities and 3–59 in larger cities. Rural SPAS have only one or two staff. The indicative staff 1 structure of SPAS, as per GD no. 797/2017,579 is only partially implemented. The highest deficit is registered among persons responsible for providing social services and case managers responsible for children and adults with disabilities in care of their families. The workload in the disability field varies considerably across localities. SECPAH:580 The number of specialists employed per SECPAH ranges between 5 and 22. The analysis showed that the size of SECPAH staff is more a budget decision of the County Council than one pertaining to the size of a county’s registered population of persons with disabilities. SECPAH personnel are mainly women between 22 and 68 years old who are graduates of tertiary education, many of whom have postgraduate studies. Only a few SECPAH comply with GD no. 268/2007 (Art. 49) regarding 2 the staff specializations. Specialists like psycho-pedagogues, physiotherapists, education instructors, and rehabilitation therapists account for very few of the total SECPAH staff and are found in a small number of counties. The incomplete personnel structure in terms of specialization affects how SECPAH performs the disability assessment based on the medico-psychosocial criteria and most SECPAH in the country cannot provide a full-fledged assessment as designated by the current legislation.581 The workload per SECPAH member varies significantly according to each member’s specialization; specialized doctors have the highest workload. The workload per SECPAH specialist sharply declined during the COVID-19 pandemic, with a significant variation across counties. The drop in the number of assessed files, as well as changes to practices involved in conducting the assessment (by reducing home assessments and doing more assessments based on document review plus phone, WhatsApp, or Skype interview when possible) were the leading causes of this change. Nonetheless, the workload has remained relatively high, which, together with the distorted distribution across team members, significantly affects how the assessment is performed. The main problem related to human resources is the need for additional personnel. The insufficient number of specialist doctors was mentioned most frequently; psycho-pedagogues and physiotherapists are also needed. Many respondents also mentioned needing more professional archivists, social service workers, secretaries, and data entry operators. 578 The services of comprehensive assessment and the commission for children (SECC and CPC) are not covered, as no data were collected in this sense. 579 Art. 4, para. 2. 580 In Romania, there are 47 services for the comprehensive assessment for the classification in degree and type of disability for adults (SECPAH). The DGASPC provides these services in all 41 counties and 6 districts of Bucharest. 581 More details are available in Chapter 4. 268 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM CEPAH:582 All surveyed CEPAH comply with current regulations.583 The average experience per CEPAH member (of about seven years) indicates that most commissions have stable teams that carry out the decisional activities. In all counties studied, CEPAH includes an NGO representative as a member. In some counties, the NGO representatives limit their involvement to applicants with the type of disability 3 served by that specific NGO. The mechanism of how the NGO representative is appointed within CEPAH is not transparent. Changing the appointment mechanism and an NGO representative’s specific roles and responsibilities might improve the disability assessment process and its outcomes. Two counties have no CEPAH secretariat, while in other counties, it is made up of between 1 and 9 persons appointed by the DGASPC director. The number of personnel in the CEPAH secretariat is correlated neither with the size of the county’s population of registered persons with disabilities nor with the number of application files for evaluation or the number of practitioners employed by SECPAH. Regarding the CEPAH workload, there is no correlation between the total number of files to be assessed and the total number of CEPAH meetings (ordinary and extraordinary) for conducting the disability determination process. Randomly increasing the number of meetings only deepens the existing discrepancies. Due to the high workload, CEPAH takes decisions on classification by disability degree and the services/benefits included in the individualized plans (PIRIS) in less than 5 minutes, based on files that include many paper-based documents. Consequently, the CEPAH solutions are the same as the SECPAH recommendations for over 90 percent of the application files. Technical expertise: In the view of a paradigm shift from a medical to a holistic approach, the current combination of technical expertise is not aligned with the ICF, at the level of CEPAH and SECPAH. Family doctors and general physicians 4 predominate, while specialists with medical expertise in work capacity or in physical and rehabilitation medicine are very rare. More such specialists would improve the use of the comprehensive assessment tools and improve recommendations for better services/benefits. Staff training: SPAS, SECPAH, and CEPAH all have minimal staff training. At the SPAS level, only 6 persons (out of 478) benefitted from training about the SPAS’s role and duties for classification by degree and type of disability. Only 3 employees 5 were trained on how to complete the framework model584 for the mandatory social inquiry. The current training and mindset of local level practitioners is not conducive to change, and might hinder the system’s reform. Training at the SPAS level is critical for promoting any systemic change. ICF-related training is also extremely limited. At the SPAS level, out of 478 surveyed employees, only 5 have ever attended training in connection with the ICF. Among CEPAH, out of 120 members, only 8 (from 8 counties) have ever participated in ICF training. The SECPAH staff’s knowledge about the ICF is too limited to fully understand the systemic transformations that would come with changing the paradigm from a medical to a holistic one. Therefore, raising awareness and training among SECPAH and CEPAH practitioners could be a game-changer, as it might advance or undermine the reform. They will not accept or properly use the new instruments if they do not understand the implications of the change. To this aim, a special budget should be earmarked that considers current market prices of accredited training providers. 582 In Romania, 47 evaluation commissions for the classification in degree and type of disability for adults (CEPAH) operate in all 41 counties and 6 districts of Bucharest. CEPAH are specialized bodies with no legal personality, attached to the County and Local Council of the Bucharest districts. 583 Law no. 448/2006, Art. 85(4) and GD no. 430/2008. 584 GD no. 430/2008, Annex 6. Chapter 9 I 269 Work procedures: There is no unified approach to disability determination across the country. The SECPAH work procedures for disability assessment are only partly developed. The severely underdeveloped work procedures refer to how to treat discrepancies between the assessments done by specialists outside the SECPAH and 6 that of the SECPAH practitioners, how to identify and correct suspected cases of fraud, training and working methods in multidisciplinary teams, transition from childhood to adulthood, and individualized plans for intervention. Also, very few counties base their disability determination on specific CEPAH work procedures. In the case of CEPAH, most of the considered procedures are perceived as useful and would need to be developed. Improving the working procedures and instruments could be perceived by SECPAH and CEPAH specialists as a way to boost system performance but should be accompanied by changes at the staff level. Data management and information system: There is no information system for managing and administering the disability-related system, and processes along the 7 entire delivery chain are rarely automated (if at all). Most activities connected with the disability assessment are paper-based. To address the gap, the ANDPDCA is currently implementing an EU-funded project to develop the National Disability Management System.585 Software applications that automate key functions and processes such as cross- checks, validation and verification, benefit management, payment administration, and beneficiary data management are manual or nonexistent. In the existing assessment software applications, counties have substantial differences in what kind of data is recorded. Similar discrepancies are registered regarding all types of information used in the disability assessment. In many counties, rigorous data about the registration and initial verification of the application files are recorded in paper registries, and are not available in electronic format. Data about dropout and exits from the system are not available. The least recorded data in the assessment software application refer to the applicant’s plans, fears, hopes, or wishes about the life he/ she wants to live. The quality of data in the existing databases is rather poor. Most of the existing databases are merely lists with only a few characteristics that allow very limited data interrogations. Data management is highly fragmented, not only between but also within counties (among SECPAH, CEPAH, and its secretariat). Use of data for public policies: The collected data are used for internal reporting and less often for documenting disability-related public policies, especially to prepare local strategies and identify needs for social services. At the local level, some SPAS 8 do not have data but make policies, while others have solid data but do not use them to make policies pertaining to persons with disabilities. Most SPAS report using a participatory approach by involving the representatives of persons with disabilities to analyze collected data and define policies. At the county level, the monitoring reports of both SECPAH and CEPAH are rarely publicly disseminated. Less than half of SECPAH and less than a fifth of CEPAH use data to document relevant public policies for persons with disabilities, and very few use a participatory approach. Access to and quality of data on the situation of people with disabilities in Romania should be improved. A separate study should be launched to examine ways to increase the availability and use of disability data. Therefore, anonymized and possibly aggregated national and regional data from SECPAH and CEPAH should be made available for research and policy making. At the SECPAH/CEPAH level, no IT/data management/data analysis specialist 585 The general objective of the project is to develop and implement a centralized national platform to collect, store, and distribute information on people with disabilities (adults and children) to central and local public authorities, individual beneficiaries, and institutional partners. More details at http://anpd.gov.ro/web/wp-content/uploads/2019/10/ANUNT-WEB-final-ANPD-v2.pdf 270 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM is provided, nor are data operators. Poor data management, poor data quality, and poor use of data are predictable in the absence of these human resources and under conditions of very high workload. Material resources: Insufficient office/storage space and equipment (including 9 printers, scanners, mobile phones, tablets, or laptops) are mentioned as a critical factor for improving efficiency at both SECPAH and SPAS levels. Chapter 9 I 271 272 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 10. Conclusions and recommendations586 Attempts have been made to align the procedures should be modified to perform the assessment and instrumentation of Romania’s disability and determination more effectively in accordance assessment to the ICF, with limited success. In with best international practices. To this aim, many present, the instrumentation is still not evidence- important issues must be resolved, including based, or psychometrically sound, and diverse revamping the assessment methods and tools, information from various sources has no identifiable redesigning the process and procedures, enhancing impact on the decision of disability determination. the flow, availability, and usability of data, aligning In the end, the lack of quantifiable criteria leaves services provided to persons with disabilities, and room to a predominantly medical-based disability aligning assessors’ capacity and knowledge base assessment. The Romanian disability assessment with the ICF standards. 10.1. Challenges and binding constraints to adopting a holistic approach to disability assessment and determination 1. Challenges of disability assessment and determination The procedure and instrumentation of the practitioners should work together to establish and SECPAH comprehensive disability assessment adopt the ICF principles. do not align with the ICF principles. The ICF The SECPAH comprehensive assessment is principles require disability assessment to include predominantly based on medical criteria and, in both medical and functional components, defining the absence of quantifiable psychosocial criteria, the criteria and decision-making process. According cannot accurately capture neither the persons with to the ICF approach, physicians should evaluate disabilities’ needs nor participation restrictions or an applicant’s impairments at the level of body activity limitations (functional assessment). The functions and structures according to items related to regulation on the medico-psychosocial criteria uses ICF categories. The other aspect of decision-making ICF terminology in the arrangement of chapters, should assess the applicant’s activity limitations grading options, and in the Activities/Participation and participation restrictions using functional and component. But, merely using ICF terminology does environmental factors. Ideally, a group of qualified not mean it embodies the ICF model of functioning 586 In this report, the term “certificate” means “disability certificate.” Any other type of certificate discussed is referenced by full name. Conclusions & Recommendations I 273 and disability. The medico-psychosocial criteria poorly developed. The most deficient are the work constitute essentially a standard Baremic instrument procedures on how to treat discrepancies between that has been extended by including Activities and assessments by specialists outside the SECPAH Participation domains, as well as professional skills. versus the SECPAH practitioners, how to identify Thus, the existing criteria is not aligned with and correct cases suspected of fraud, how to develop the ICF understanding and operationalization of training and working methods in multidisciplinary disability (in terms of deficiency or limitation in the teams, and how to handle the transition from performance of functioning). childhood to adulthood and develop individualized The current method of establishing the plans for intervention. Also, disability determination disability degree based on the medico-psychosocial is based on specific CEPAH work procedures that criteria is rather arbitrary and empirical because are only applied in very few counties. In CEPAH, it is not based on a solid methodology from a most of the procedures are perceived of as valuable scientific point of view - either based on evidence and would need to be developed. or a robust methodological form of consensus. The decisional process within SECPAH and The SECPAH assessment does not take into CEPAH lacks transparency and is less participatory account all the health conditions simultaneously than provisioned by the law. The absence of of the person in determining the disability degree, procedures or guiding rules is accompanied by although comorbidities are common, especially a lack of records regarding how or why decisions for the elderly. Most of the tools used in any of were made, without providing applicants with the six mandatory assessment areas587 - social, a clear explanation for why a disability degree psychological, vocational or professional skills, was conferred (or not conferred). There is no education level, social skills/integration level – do uniform procedure by which the SECPAH team not have scientific validity for disability assessment, should conduct a comprehensive assessment, nor do they align with the ICF. In practice, SECPAH and procedures vary between counties in several teams usually rely to a small extent on information respects. In some counties, each expert (doctor, provided by social inquiries, even if they conform psychologist, social worker, psycho-pedagogue) to the standard framework model.588 sees the person individually, who is interviewed The CEPAH decision is not different from or subjected to assessments with standardized the SECPAH comprehensive evaluation. The testing tools. In other counties, a SECPAH team disability determination is done solely based on the panel interviews the person for 5–10 minutes, document review, and the commissions rarely see without using specific instruments. Moreover, in the applicants. The duration of the commissions’ the ICF-based conceptual model, key elements decision-making process per case is approximately include a partnership between the person and the 5 minutes, which does not allow for proper service provider. Thus, regardless of the person’s deliberation or comprehensive, evidence-based age or health status, the service provider takes into decision-making. Under these conditions, CEPAH account the person’s routines/lifestyle, concerns, decisions are the same as SECPAH recommendations fears, and plans with reference to all areas of life for over 90% of cases. Therefore, the process can be (health, education, work and social activities). considered redundant. In addition, in Romania, From the ICF perspective, most of the tools used unlike other countries, over 90 percent of applicants in Romania for both assessing and determining are classified into a disability degree. It is generally disability, and for assessing service needs, are still sufficient to have a relevant medical condition and too focused on medical aspects, are insufficiently submit an application to get certified. participatory, and based on models that need to be There is no unified approach to disability revised to include the person’s resources, the way determination across the country. The SECPAH he/she wants to live, and environmental factors, in work procedures for disability assessment are addition to needs identified by the assessment. 587 GD no. 268/2007, Art. 48. 588 GD no. 430/2008, Annex 6. 274 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 2. Challenges of institutions and human capital Generally, SPAS and SECPAH lack sufficient specialists with medical expertise in work capacity professional staff, while the size of CEPAH is or in physical and rehabilitation medicine (PRM) are unrelated to the size of the population of persons very rare.589 More such specialists would improve with disabilities officially registered in the county. the use of the comprehensive assessment tools and The main problem related to human resources improve recommendations for better services/ is the need for additional personnel. Only about benefits for persons with disabilities. a third of the local authorities has a SPAS that is Staff who serve persons with disabilities have accredited according to law. The highest deficit is a very high workload, which varies considerably in persons responsible for providing social services across specialization, county, and locality. While and case managers responsible for children and SECPAH staff workload declined during the adults with disabilities living with their families. pandemic, it remained relatively high. The workload Only a few SECPAH comply with the requirements per SECPAH member differs considerably according regarding staff specializations; some SECPAHs to the member’s specialization, with specialized include employees who do not meet the study doctors registering the highest workload. Generally, requirements mentioned in the law. Specialists such the workload is very high in CEPAH, especially as psycho-pedagogues, physiotherapists, education since the members of the commissions have at instructors, and rehabilitation therapists account least one full-time job in addition to their activities for a very small proportion of the total SECPAH in CEPAH. The discrepancies between counties staff and are found only in few counties. are significant and depend both on the number Regarding a paradigm shift from a medical to of persons with disabilities in the county and on a holistic approach, the current combination of the size and composition of SECPAH/CEPAH. technical expertise is not aligned with the ICF, Similarly, the workload in the disability field varies either at the CEPAH and SECPAH level. Family considerably across localities. doctors and general physicians predominate, while 3. Challenges of interaction with the applicants and information management A management information system for the SECPAH/CEPAH level, no IT/data management/ disability-related system is nonexistent, and data analysis specialist is provided, nor data processes are not automated along the entire operator. Poor data management, poor data quality, delivery chain. Most activities connected with the and poor use of data are predictable in the absence disability assessment and determination are paper- of these human resources and under conditions of based.590 Software applications that automate key very high workload. functions and processes have limited functionalities In Romania, the uptake and registration phase or are nonexistent. Therefore, most activities— is much more burdensome than in many other such as cross-checks, validation and verification, countries. International experience shows that most administration of benefits, administration of countries have implemented various measures to payments, and beneficiary data management— minimize the number of papers an applicant should are manual. Counties have substantial differences submit. In more advanced administrative systems, regarding the kind of recorded data in the existing a person can register electronically for the disability assessment software applications. In many counties, assessment and medical documents are pooled rigorous data about the registration and initial from an e-health system, while a social inquiry (if verification of the application files are recorded in needed) is obtained through institutional protocols paper registries, and are not available in electronic with no involvement, cost, or effort required on format. Data about dropout and exits from the the part of the applicant. Romania should strive to system are not available. The quality of data in advance on this path. the existing databases is relatively poor. At the 589 However, the legislation (Art. 49 of GD no. 268/2007) mentions “specialized doctor” without any other specific requirement or restriction. 590 To address the gap, the ANDPDCA is currently implementing an EU-funded project to develop the National Disability Management System. Conclusions & Recommendations I 275 The collected data are used for internal disabilities to analyze collected data and define reporting and rarely to document public policies policies. At the county level, the monitoring and and identify social service needs relevant to evaluation reports of both SECPAH and CEPAH persons with disabilities. At the local level, some are rarely publicly disseminated. Less than half of SPAS do not have data but make policies. Others SECPAH and less than a fifth of CEPAH use data have solid data but do not use them to make to document relevant public policies for persons policies that target persons with disabilities. Still, with disabilities, and very few use a participatory most SPAS report using a participatory approach approach. by involving the representatives of persons with 4. Challenges of outreach Lack of proper disability outreach programs limit The existing interface between people and resources available for people with disabilities. institutions is a “weak link” of the disability Many persons with disabilities in Romania do not system. The information provided is incomplete have access to the same educational and labor market and poorly adapted according to the various types opportunities as their peers without disabilities. The of disabilities and the vulnerable groups that face outreach programs fail to facilitate the inclusion of social risks. The main risk of communication gaps persons with disabilities into society, and do not at this phase is that the target population will be provide them with more options or offer proper missed, be unaware of the program, or will not assistance. For many persons with disabilities, the understand the program and fail to register. More stigma associated with the disability is critical to efforts are needed to meet the UNCRPD (Art. 9) their participation. Proper attention and outreach requirement to ensure accessibility to information programs can mitigate the impact of the stigma and and communication to enable persons with reduce social avoidance, stereotyping, and, in many disabilities to fully enjoy all human rights and cases, discrimination and condescension. fundamental freedoms. 5. Challenges of service needs assessment and case management In Romania, the needs assessment of persons with ones, insufficiently participatory and based on disabilities is not done with adequate evaluation templates that need to be revisited to include the tools and according to a specific methodology. person’s resources, the way he/she wants to live, The individual rehabilitation and social integration and environmental factors, in addition to the needs program (PIRIS) and the individual service identified through assessment. Thus, PIRIS, as plan (PIS) are the only instruments that include they are now, are weakly linked to the assessment conclusions on the the person’s need for services. conclusions and do not represent anything in The PIRIS specifies the activities and services the terms of an intervention plan. Also, the existing adult with disabilities needs for social integration. PIS are just lists of general recommendations that PIS specifies intervention and support for adults do not comply even with the basic standards of with disabilities, through which the activities and proper information, let alone orienting or referring services recommended in PIRIS are carried out. persons with disabilities to the necessary services. The services and actions included in PIRIS and PIS In addition, there is no M&E mechanism connected adequately reflect the results of the medical and to PIS and PIRIS. Consequently, data from PIRIS psychological assessments, but less often the results are not recorded or analyzed to identify the social of the assessment of vocational, educational, and services needs of persons with disabilities at the skills and social integration level. county level. Therefore, PIRIS/PIS can become The existing individualized plans (PIS and effective only if the available menu of benefits and PIRIS) are of poor quality, and their content is services covering the variety of needs of persons with not entered into the SECPAH/CEPAH database(s), disabilities is extended, services become available, while case management for adults with disabilities especially in rural areas, case management for adults is still in an early stage of development. From with disabilities is developed, and a mechanism for the ICF perspective, both PIRIS and PIS are still monitoring PIRIS/PIS implementation is put in overly focused on needs, especially the medical place. 276 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM 6. Challenges of transition of young people with disabilities to adult life The transition process for youth with disabilities disabilities and their families alone to struggle with is poor in terms of information, support, and their new reality. Reforms are needed to streamline counseling. As young people with disabilities turn the transition process and develop appropriate 18 years old, they often find themselves cut off from services that support children and their families their current support and services, and fall through during the difficult transition period. the cracks of an inefficient adult care system. The Disability in children is no longer assessed lack of information on the transition process, lack solely based on the medical model, but on the of understanding of the changes to the assessment elements of the social model that take basic ICF system, and absence of general counseling make principles into account. While this report does the transition process especially difficult for many not set the criteria for children’s assessment, there families. are significant differences between the disability Romania lacks a fair and transparent transition assessment for children and adults. Transition to process, and differences in the determination adulthood results, in some cases, in changes to process lead to discrepancies in the system. The the degree of disability or even a denial of a new transition is abrupt and disorientating for many disability certificate. This may directly affect benefits young people with disabilities. The law defines and impact the family’s income and services, which the support during the transition period, but it is negatively impacts the quality of life of both young almost nonexistent in practice, leaving youth with people with disabilities and their families. 7. Challenges of appealing the disability certificate The process of appealing the disability certificate the costs it entails; (v) court judgments regarding is flawed. The provisions concerning appeals were appeals against the disability certificates are modified by EGO no. 51/2017 with the declared highly subjective, for two main reasons: the lack purpose to simplify the appeal procedure and of information or specialty support regarding facilitate persons with disabilities’ direct access to disabilities and medico-psychosocial criteria the administrative litigation courts. The analysis available to the courts, and the lack of training presented in Chapter 7 shows, however, that: (i) on these topics, among both judges and lawyers. the appeal process is largely unpredictable, and the Therefore, the new legislative framework did not information provided at the DGASPC level does achieve its declared purpose to facilitate access to not, in most cases, help improve predictability, justice for people who are not satisfied with the although some CEPAH developed good practices disability degree assigned to them, and it does not for providing information, advice, and support; (ii) support a correct, informed, or respectful appeal Romania’s disability certificate appeal mechanism process. The appeal process cannot be improved by does not include a continuous learning dimension changes made only in the administrative litigation and does not follow the transparency principle; (iii) courts. Major changes at the DGASPC level are administrative litigation departments currently do also needed, by creating a complaint and appeal not process appeals against disability certificates redress mechanism to act as a “verification factor” with urgency; (iv) persons with disability and for the SECPAH/CEPAH and an alternative route NGOs express their dissatisfaction or even drop the for people who are not satisfied with the disability appeal because of the cumbersome procedure and degree assigned to them. Conclusions & Recommendations I 277 10.2. Key policy recommendations Romania’s disability assessment, determination, A. improve disability assessment and determination and needs assessment processes should be more by introducing the ICF framework; effectively aligned with the ICF principles. We B. improve access to services tailored to a person’s envision three main pillars of the proposed reforms: specific needs; and C. integrate all disability-related systems. Pillar A. Improve disability assessment and determination for adult persons, by introducing the ICF framework A.1. Integrate functioning into disability Instead of six areas of comprehensive assessment and determination assessment, the system should consistently collect functioning information using a single, The current six-part, comprehensive assessment standardized, psychometrically sound instrument. of disability should be replaced by a medical This instrument must be scientifically appropriate assessment augmented by a functioning-based for creating a summary or “whole person” disability assessment score from a psychometrically sound score, preferably on an integral scale. Such an instrument, one that is fully aligned with the instrument can produce a proper functioning score ICF model of functioning and disability and is that can be systematically integrated into the medical standardly and consistently used in every county. evaluation for a final disability assessment result. Modernizing Romania’s disability assessment This substantial change in instrumentation will, of system requires that functioning information course, require changes in the responsibilities and be integrated into the assessment process in a procedures used by both the SECPAH and CEPAH meaningful and scientifically sound way. Yet commissions. for a variety of reasons, this does not occur in the The current medico-psychological criteria should be current system: (i) the medico-psychosocial criteria revised (possibly with the Activity—Limitation and purports to assess selected domains of Activities and Participation—Needs component), by updating Participation from the ICF, but this information is the medical information and modifying it to allow not validly collected, nor is it used in the assessment; for joint evaluation of multiple health conditions, (ii) the social inquiry collects some information multimorbidity, and alignment with the ICD-11. about functioning and the applicant’s environment, The current medico-psychosocial criteria are but this information is not systematically collected, primarily based on the Baremas method.592 As a nor is there a clear procedure on how to use this general matter, the Baremic approach is inconsistent information in the evaluation process, i.e. in the with the model of functioning and disability found six mandatory assessment areas;591 (iii) valid in the ICF. Nonetheless, medical and psychological psychological instruments are sometimes used, but information about the applicant is essential for as with information about vocation, education, and disability assessment, as it determines levels of social integration, the functioning information is intrinsic health capacity that are determinants— sporadically and inconsistently collected; and (iv) along with environmental factors—of disability. none of the functioning information that is collected Specifically, it is vital for disability assessment— has any meaningful impact on the final assessment, and the subsequent provision of supports and which is predominantly done by a medical services—to have medical information such as specialist. Therefore, the first and most essential frequency of symptoms, chronicity and long-term reform required to modernize disability assessment outcomes, and other prognostic factors. In addition, is to collect functioning information in a consistent in its current format, the medico-psychosocial manner that is standardized for all counties and criteria includes Functional Parameters, which is scientifically sound. Second, this information are valuable as they ensure standardized medical must have a genuine, transparent, and measurable evaluation of symptoms, and risk factors. impact on the final disability assessment in all cases and for all counties in the same manner. 591 GD no. 268/2007, Art. 48. 592 The Baremas method consists of using reference scales, to which values or percentages are attached, to define impairment, according to the Council of Europe (2002: 13). 278 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM The medico-psychosocial criteria require effects on his or her level of functioning; (ii) in the permanent updating to ensure it reflects state-of- future, Romania can benefit from a more robust the-art in the medical field, but also a continuous electronic health information collection system approach to the concept of disability, so that the in which health and functioning information can assessment to establish both the real need for be standardly collected and reported in a manner support and functional potential of the person. comparable across the country and internationally. For the purposes of disability assessment, it would This will require standardized terminology and also be valuable for the medico-psychosocial coding capacity to ensure interoperability. The criteria to be modified in two additional respects: (i) ICF provides such informational infrastructure as it is currently designed, the medico-psychosocial for functioning information. Still, for medical criteria cannot properly assess multimorbidity, information, the M-PC will, in time, need to be i.e., the common situation in which an individual updated so that it is aligned with the current version experiences more than one disease or health of the International Classification of Diseases, ICD- problem, which may interact to compound the 11. A.2. Redesign and develop clear procedures that respect ICF principles Ensuring that assessment tools and procedures are a more meaningful and comparable instrument, applied uniformly at county level and a possible which offers a new approach to the disability revision of the current institutional arrangement determination process. The new procedures should is a necessity from a human rights perspective and be developed in a collaborative process featuring should be a key priority in policy reforms. practitioners, social workers, international ICF New disability assessment and determination experts, policy makers, and disability advocates. procedures based on the ICF principles urgently The role and responsibilities of CEPAH, need to be designed and implemented. Currently, in relationship to SECPAH, for the disability the disability assessment and determination assessment process should be clarified and processes are not always clear or consistent across standardized across counties. The government counties. It is important to emphasize that the need should conduct a general review of the roles and for cross-country consistency—both in terms of responsibilities of CEPAH and SECPAH in the instrumentation and procedures—is fundamentally context of modernizing disability assessment. Such a matter of human rights: people who are similarly a review should consider the need to set a single situated and experience similar levels of disability institutional location for disability assessment that must, for reasons of justice and equity, be assessed should be, to every extent possible, standardized in similarly. It is unfair and discriminatory to do instrumentation and procedure across all counties in otherwise. This is mandated by all human rights Romania. In this review, the focus should be on the treaties and by the United Nations Convention on potential added value of the CEPAH commission, the Rights of Persons with Disabilities. Redesigining and avoid duplication or redundancy with the disability assesment and determination SECPAH. Improving the working procedures and procedure provides an opportunity to introduce instruments will enhance the system’s performance. A.3. Invest in skills development Investing in human capital and developing ICF explicitly trained in the domain of functioning. training courses is crucial to explain the correct use Physical and rehabilitation medicine professionals of the ICF as a classification and to show its impact have both the conceptual and clinical expertise and usefulness on daily practice, particularly in to assess functioning based on appropriate and multidisciplinary teams. sufficient documentation and evidence. Other Aligning the procedures, instrumentation, rehabilitation professionals—physiotherapists, and disability assessment criteria to the ICF has occupational therapists, educational and vocational implications for human capital requirements. therapists—are equally well versed in the ICF As a rule, when a jurisdiction moves from the notion of functioning and disability, whether or not medical approach to a holistic, multidimensional they have the full clinical experience and expertise ICF functioning approach, there are also changes to assess disability as a summary measure, rather in qualifications and expertise requirements for than in terms of specific functioning domains such assessors. Traditionally, this change is within the as mobility, independent living, or employment. In purview of rehabilitation professionals, who are some countries, community nurses, social workers, Conclusions & Recommendations I 279 and other health and social professionals may be • All SECPAHs in the country should be able to relied on. provide a full-fledged assessment as designated Alignment to the ICF framework requires by the current legislation. To this aim, additional the assessment process to benefit from medical personnel should be hired, including enough expertise, but it should not be solely determined by specialized doctors, especially in physical it. International experience shows that countries use medicine and rehabilitation, as far as possible. a multidisciplinary team that includes physicians, • Completing the SECPAH/CEPAH composition nurses, rehabilitation professionals, and social with a legal adviser could improve the workers. The theory is that a multidisciplinary team transparency of the decision-making process. would ensure that the full range of determinants of • In parallel, workload should be reduced and disability—medical, rehabilitative, environmental, balanced across the specialists. One possible and social—will be taken into account. At a solution includes mentioning in the legislation/ minimum, all assessors, or members of assessment methodological guide the necessary time for teams or committees, should be fully aware of and assessment per case. trained in the ICF understanding of functioning and the need to address disability as a global, The number of CEPAH members and that of summary experience, shaped by both health the personnel designated in the CEPAH secretariat and environmental determinants. A more robust should be correlated with the size of the county’s reform to fully adopt an ICF approach to disability registered population of persons with disabilities assessment would be to shift the required knowledge or the number of application files in need of base, clinical expertise, and professional experience evaluation, or the number of practitioners employed of assessors from a solely medical perspective to a by SECPAH. combination of medical and broadly rehabilitative Staff training should be extended to all SPAS, focus that includes functioning and contextual SECPAH, and CEPAH. Training on ICF should factors (environmental and personal). be carried out for all staff at SPAS, SECPAH, and The reform should be accompanied by CEPAH, and opportunities to exchange experience improvements at the personnel level. Therefore, and teambuilding should be multiplied. Judges and raising awareness and training SECPAH and other relevant personnel should also know the ICF CEPAH practitioners could be a game-changer. practices and methodologies. For some groups of Other measures needed related to human resources specialists (e.g., occupational therapists), training include: on the ICF should be aligned with the curricular content of their licensure. A.4. Improve interaction with applicants by improving data management Digitizing and improving interoperability of the countries. databases will increase transparency at all levels As ICF-compatible instrumentation data of the disability determination process, streamline become available, more accurate national statistics and improve workflows, and significantly improve on all aspects of disability can be collected and the system’s performance. stored. A consistent flow of administrative data, The ICF provides an appropriate platform to coded by ICF classifications, is essential to track and digitally collect and store health and functioning monitor all forms of disability programming. As information in a manner that guarantees semantic these databases expand, it will be possible to analyze interoperability across other existing platforms. trends in disability benefit applications, success ANDPDCA, in collaboration with all stakeholders, rates, and other parameters. Eventually it will be should ensure that all commonly used health and possible to correlate disability rates with underlying rehabilitation data collection tools translate to ICF health conditions and socio-demographic trends, classifications, so that new ICF-based data are such as aging patterns and economic conditions, compatible with previously collected clinical data to identify pathways for policy development and and other legacy databases. This is a precondition planning. to successfully develop an e-health and health At the first encounter with the applicant, information system. The fact that ICF is an there is a need for an approved procedure, steps, international standard ensures that national health or rules for conducting the social inquiry for information is comparable to similar data in other disability assessment. Moreover, it is vital to 280 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM collect and maintain information on all applicants, • Clear guidance should be given to counties on not just those who eventually become beneficiaries. what data must be collected, and software for As such processes are typically not automated, an data capturing should be created. For instance, information system for managing and administering SPAS and SECPAH/SECC should systematically the disability-related system should be developed collect, record, and analyze data about intake by ANDPDCA along the entire delivery chain. and registration, including on the phenomenon of drop-out/refusal during the process in order • It is vital to connect several existing database to identify system dysfunctions that become registries and make data available, such as the access barriers to disability assessment. number of people diagnosed by a specialized physician as suffering from a medical condition • Generally, the quality of data and consistency connected to the disability criteria, the number in the existing databases should be improved of people who asked for/received a medical by clear guidance, methodological notes, letter from their family doctors, or the number of validation, and proper software. Most of the people who sought to obtain medical documents existing databases are merely lists with only to apply to the disability certificate, for a certain a few characteristics that allow very limited period. data interrogations, and data management is highly fragmented between and within counties • SPAS’s and SECPAH/SECC’s access to the (among SECPAH, CEPAH, and the CEPAH national registers and administrative should be secretariat). ensured, to reduce applicants’ efforts to obtain the necessary documents and, at the same time, • Adding an IT/data management/data to allow cross-checking by institutions. analysis specialist or even a compartment for this purpose within SECPAH could improve • Software applications that automate key data management, quality, and use in the functions and processes—such as cross-checks, process of formulating policies and plans for validation, and verification, administration of the development of services for persons with benefits, administration of payments, beneficiary disabilities, at county and national level. data management—should be improved or created. Pillar B. Improve access to services tailored to the needs of persons with disabilities B.1. Make disability outreach a priority Romania should clearly articulate a viable to manage expectations, minimize grievances, and outreach strategy and programs to reach people develop better mutual understanding to avoid the with disabilities. The persons with disabilities risk of negative spiral, program failure, external population is diverse, and includes women, men, manipulation, loss of credibility, and politicization. children, youth, elderly, people from different It is essential that people with disabilities participate ethnic groups, people living in large cities and those in developing information and communication in remote rural areas, people living with family strategies and programs. and those in residential institutions, patients in While further analysis is needed in this area, psychiatric facilities or those in detention, homeless some of the policy measures could be summarized people without a fixed address, and people in as follows: families with varied socioeconomic status and • It is crucial to systematically evaluate the conditions. These groups may require particular effectiveness of existing efforts. The ANDPDCA adaptations or accommodations to ensure they should undertake a comprehensive assessment are reached and served. Communication must be of outreach programs and practices to gauge available in ways so that persons with disabilities future training and development needs and are aware, informed, able, and encouraged to share best practices in this area. The ANDPDCA engage. Evidence shows that in the absence should undertake further research to design of a well-thought through outreach strategy, specific strategies, including comprehensive social protection programs may run the risk of outreach, improving services and access. exacerbating exclusion errors for lack of information and skepticism. A proactive outreach effort can help Conclusions & Recommendations I 281 • Joint outreach programs should be undertaken documents prone to fraud regarding the at CEPAH, and SECPAH that also comprise accuracy of the information they contain. tools to support SPAS. A technical expert panel • The persistent core message of ”handicap” needs comprised of interagency representatives to be changed to ”disability” to support reforms should be formed to develop and pilot outreach that shift the system from a medical to a holistic guidelines. approach. This is not possible without legislative • One method to considerably enhance the change both in the Constitution and in public outreach used in some countries is to introduce policies documents. But equally, sustained a standardized form (such as a green form) information, education and communication that must be completed by any specialized campaigns are needed to change the perception physician once he/she establishes a medical of current beneficiaries, as well as the general diagnosis connected with the disability criteria. perception of disability as a “handicap” and For example, this could be done by establishing of the disability certificate as compensation for a list of disease codes to be jointly approved by medical conditions. the MoH and the MMPS. In addition, the “green • The ANDPDCA website should include a form” may be accompanied by a brochure with dedicated page, updated permanently, including the core information required to be delivered complete and fully accessible information on the by the medical unit. The introduction of such a disability assessment for children and adults, measure would not only have the potential to to fill the gaps from the DGASPC and SPAS improve the initial information of all categories websites and to ensure all citizens have equitable of the population, but would also increase access to information. access to disability assessment while restricting the opportunities to obtain/provide medical B.2. Improve needs assessment and develop case management for adults with disabilities Improving needs assessment and case management individuals classified with degree of disability. is as important as improving disability assessment The instruments must be standardized and and determination, as without this step the ultimate harmonized based on a PIS template and a goal of increasing persons with disabilities’ access revised PIRIS format, as well as a specific to services and benefits, and thus contributing to methodology aligned to the UNCRPD and increasing their quality of life, cannot be reached. ICF. A mechanism to monitor PIRIS/PIS The policy measures needed in this regard include: implementation should be put in place and • Improving case management is an important frequently evaluated. The monitoring results reform that should be undertaken to ensure it is could also help identify development needs for an integral part of the disability assessment and persons with disabilities services. Over time, as determination system. Case managers engage the services become available, Romania may also with persons with disabilities to coordinate consider conditioning the benefits and services appropriate environmental interventions and provided based on the effective implementation support and mobilize personal resources. Case of the recommendations in the individualized managers must focus not only on a person’s plans (PIRIS/PIS), especially regarding recovery impairment of function or activity limitations, and rehabilitation.593 but also on the barriers and challenges created • The benefit-service package connected to the by the external environment. Thus, case disability assessment should be extended. managers use the ICF framework, integrated Services should become available countrywide, and multidisciplinary, to developing person- including in the remote and rural areas. centered intervention plans. ANDPDCA should also explore the possibility • The needs assessment instruments PIS and of introducing new support measures, such as PIRIS should be made compulsory and grant programs to adapt houses or cars to meet improved. Both should become obligatory for all a particular person’s needs. 593 Currently, the legal provisions stipulate only that the persons with disabilities and their caretakers are obligated to fully carry out the services and activities included in PIS, but there are no consequences for failing to do so. That is because too few adults with disabilities have appointed a case manager or benefit from a PIS, and services for persons with disabilities are very poorly developed, inaccessible, or even non-existent in many parts of the country. 282 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM • Developing ICF-based rehabilitation services, collaboration between DGASPC/SECPAH and both medical and vocational, represents a top the other service providers (public and private) priority for reforming the disability system to create a functional network instead of the and making effective individualized plans. existing clusters of isolated services. Developing Improving the access of persons with disabilities an integrative platform with information about to existing services is equally important. More lifelong benefits and services available to persons efforts should be made at the county level to with disabilities coordinated by the ANDPDCA develop partnerships, communication, and could add considerable value in this respect. B.3. Make the transition from childhood to adulthood gradual The transition of young with disabilities to income following the transition. Counseling the disability assessment for adults should be sessions could also consider providing support streamlined by the ANDPDCA, clearly articulated in identifying alternative scenarios that could be in new laws and procedures based on the following followed. guiding principles: • Efforts should be increased to provide adult life • A new, possibly drafted jointly between training programs carried out in cooperation or SECC/CPC and SECPAH/CEPAH, should be partnership with legal entities, public or private. introduced that benefits youth aged 16-26 years These programs should focus on increasing the old and their families involved in the transition participation of young people with disabilities in process. The comprehensive assessment services both education and the labor market. To this end, and the assessment commissions for children easily accessible educational and professional and adults should hold regular consultative orientation services should be developed to meetings and share all assessment documents. reach as many young people with disabilities Joint meetings should be held between youth aged 16–26 from both the special protection with disabilities and their families and the system and their families as possible. Also, representatives of SECPAH/CEPAH. mediation and labor market integration services (possibly in collaboration with specialists from • Increase the formal transition period from county employment agencies) could be available childhood to adulthood, tentatively from 16 under such programs for both young people to 20 years old. For young people enrolled in with disabilities and their parents, especially in education, the period should be further extended the event of young people losing their right to a until they receive their degree or turn 26 years personal assistant. old. Maintain the degree of disability as long as the child is in school, so they continue to receive • The transition to adult life should be coupled the same benefits. with a program to assess the development of independent living skills. Such a program should • From age 16, in addition to regular evaluations, be applied consistently across the country for all the young person and their family should young people with disabilities, especially those also receive information and advice about the who live with family, both before and after the possible outcome of an evaluation and the age of 18. Current services to develop such skills criteria and procedures applied to adults (by are also insufficient, especially for young people SECPAH/CEPAH). Dedicated tools should with disabilities living with their families. To be developed by adult assessment specialists facilitate the transition of young people with to assist the SECC/CPC in conducting such disabilities to independent living, specific simulations. measures should be introduced, starting with the • In addition to information, counseling activities transition to adulthood, to reduce the burden of should be carried out with young people care for families. For example, this might include with disabilities and their families in order to a systematic monitoring program for early understand the effects of the transition from identification of possible risks/vulnerabilities or child to adult, in relation to a possible reduction counseling and educational training programs in benefits and services provided to the child for parents and families. and the possibility of a significant drop in Conclusions & Recommendations I 283 B.4. Facilitate persons with disabilities’ access to address the courts directly, and develop a complaint and appeal redress mechanism To improve the process of appealing the disability set up). In this way, a legal adviser could bring certificate, the analysis presented in this report value and transparency to the decision-making highlighted the following measures: process for disability degree classification. • Drafting guidelines (“how to appeal the disability • To minimize subjectivity in court judgments degree certificate”) to be universally distributed regarding appeals against the disability could improve the predictability of appealing certificates, courts should receive support in the disability certificate if the guidelines were terms of information, or specialty support developed nationally and provided to all regarding disabilities and medico-psychosocial DGASPCs in the country. Simply delegating criteria. Additionally, training on these topics a new requirement to county level, without should be provided both to judges and lawyers. increasing the available institutional resources, ANDPDCA could also identify and train experts would only increase stress and noncompliance. who can provide assistance to the courts. • The CEPAH secretariats should continue • Developing, at the DGASPC level, an actual to receive and register appeals against the complaint and appeal redress mechanism that certificates, even under the terms of the new legal respects the principles of accessibility, equity, framework. In addition, they should collect data predictability, transparency, and continuous that could inform statistics, case studies, or more learning could be a way to support those who detailed information about how certain cases disagree with the assigned disability degree and are dealt with, which is important for proving reduce the number of appeals filed in court. And the mechanism’s legitimacy and improving for those people who would still file in court, confidence about its efficiency. the DGASPC, through a dedicated department, could provide guidance services and refer • Also needed is a standardized template people to free legal assistance, maybe under a for substantiating the decision regarding collaboration protocol with the Bar Association classification/non-classification or degree and with NGOs, and prepare for the courts a of disability that should be completed by list of necessary procedural adaptations for SECPAH or CEPAH and can be used by the each person, based on data in their file and on courts. For this measure to be implemented in interactions with the person and their family. all counties, solutions must first be found to This new redress mechanism should not be supplement staff and balance the workload a return to the pre-2017 situation, with a sole at SECPAH and CEPAH levels. One solution commission at the national level working with would be to include a legal adviser in SECPAH/ insufficient resources, but should be based on CEPAH membership, who could be responsible a network of county and regional institutional for: drafting the explanatory statements/ structures. Furthermore, the new mechanism substantiations for CEPAH decisions, ensuring should not prevent citizens from pursuing the quality of CEPAH meeting minutes, their rights and interests using any other route informing and advising persons challenging (administrative law proceedings or other official the certificate, providing expert opinions for the litigation mechanisms), at the national or local courts, and coordinating the grievance redress level, nor are they meant to replace the judicial mechanism related to disability assessment and system or any other form of legal action. determination (if such a mechanism were to be Pillar C. Integrate all disability-related systems The disability system in Romania is characterized separately, provide the same information and by marked fragmentation. The disability assessment documentation over and over, and wait in long represents an on-demand, single-program system lines at different offices. Inefficiencies also result (the process is initiated by individuals) and in duplications or gaps in coverage, overlapping allows dynamic inclusion (people can apply, processes, wasted resources, making it difficult to ask for assistance, or update their information keep track of which clients have received which at any time). However, the invalidity system services or how social protection resources are used. exists in parallel, and there is a separate disability The integration of all disability-related systems in system for children. The existence of many other Romania is out of the scope of this report and these program-specific delivery systems for most of the advisory services. Nonetheless, it remains a factor benefit-service packages attached to the disability that must be considered when designing the new certificate (for example, most of the health-related set of instruments and procedures to change the ones) deepen the fragmentation. It is costly and paradigm in the field of disability. inefficient for people to navigate each program 284 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM References ANDPDCA (National Authority for the Rights Grigoraș, V., M. Salazar, and C. Vladu (coord.). 2020. of Persons with Disabilities, Children and Output 4: Diagnosis of the Situation of People with Adoption). 2018. “Instruction of 3.12.2018 on Disabilities in Romania. 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Washington, Health: A Taiwanese Study.” Journal of the DC: World Bank. Formosan Medical Association 112 (11): 691–98. https://doi.org/10.1016/j.jfma.2013.09.007. Teșliuc, E., V. Grigoraș, and M.S. Stănculescu (coord.). 2016. The Atlas of Rural Marginalized Areas and of Local Human Development in Romania. Washington, DC: World Bank. http://documents.worldbank.org/curated/ en/2016/06/26536853/atlas-marginalized- rural-areas-local-human-development- romania. 286 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Annexes Annex 1. List of interviewed NGOs Nr. Name of NGO County Type Crt. 1 Asociația Nevăzătorilor din România Timiș Local 2 Asociația Națională a Surzilor din România București Local 3 Asociația Handicapaților Neuromotor din România Arad Local 4 Asociația Distroficilor Muscular din România Covasna Național 5 Asociația Persoanelor cu Talasemie Majoră București Național 6 Asociația Nevăzătorilor din România Brașov Local 7 Asociația Red Ribbon Suceava Local 8 Asociația Viața și Speranța Giurgiu Local 9 Asociația Pacienților cu Afecțiuni Neurodegenerative din România București Național 10 Asociația Down Plus București București Local 11 Asociația Pacienților cu Afecțiuni Autoimune București Național 12 Asociația Pacienților cu Afecțiuni Autoimune Cluj Regional 13 Asociația Help Autism București Regional 14 Asociația Autism România București Local 15 Asociația Națională pentru Copii și Adulți cu Autism din România București Național 16 Fundația Pentru Familia Creștină Mureș Local 17 Asociația Tonal Sibiu Local 18 Asociația Pro ACT Suport București Regional 19 Asociația Ceva de spus Timiș Local 20 Fundația de Abilitare Speranța Timiș Local References I 287 Annex 2. Key regulations in the field of disability Law no. 554/2004 Administrative Disputes Law 554/2004 Law no. 448/2006 Law 448 dated the 6th of December 2006 on the protection and promotion of rights of persons with handicap, republished, as amended and completed GD no. 268/2007 GD 268/14 March 2007 to approve the Implementation Guidelines for Law 448/2006 on the protection and promotion of rights of persons with handicap, as amended and completed Order no. 762/1.992/2007 Joint Order of the Minister of Labor, Family and Equal Opportunities and of the Minister of Public Health 762/1.992/31 August 2007 to approve the medical and psycho-social criteria based on which the classification by degree of handicap is established, as amended and completed GD no. 430/2008 GD 430/16 April 2008 to approve the Implementation Guidelines for the organization and functioning of the Commission for Assessing Adults with Handicap, as amended and completed Order no. 2298/2012 Order of the Minister of Labor, Family and Social Protection 2298/23 August 2012 on the approval of the Framework Procedure for Assessing Adults for the Classification by Level and Type of Handicap Order no. 1261/2016 Order of the Minister of Labor, Family, Social Protection and Elderly 1261/2016 on approving the Rules for the Organization and Functioning of the Higher Commission for Assessing Adults with Handicap Order no. Joint Order of the Minister of Labor, Family, Social Protection and Elderly, the 1985/1305/5805/2016 Minister of Health, and the Minister of National Education and Scientific Research 1985/1305/5805/2016/4 Oct. 2016 approving the methodology for assessment and integrated intervention in order to formally establish children with disabilities’ level of disability, and school and professional orientation of children with special education needs, and empowering and rehabilitation of children with disabilities and/or special education needs Order no. 1306/1883/2016 Joint Order 1306/1883/2016 for approval of biopsychosocial criteria for establishment of the degree of handicap for children with disabilities and their modalities to put into practice GD no. 797/2017 GD 797/8 November 2017 on approving the framework rules for the organization and functioning of social assistance public services and indicative personnel structure Order no. Order of the Minister of Labor and Social Justice of 13 March 2017 to approve the 393/630/4236/2017 Cooperation protocol with a view to implementing the integrated community services required for preventing social exclusion and combating poverty EGO no. 51/2017 EGO 51/2017 to amend and complement certain pieces of legislation; GD no. 502/2017 GD 502/13 July 2017 on the organization and functioning of the Commission for Child Protection GD no. 140/2018 GD 140 of 21 March 2018 to approve the service packages and the Framework Contract regulating the conditions based on which medical assistance, medicines and medical devices are granted in the social health insurance system for the years 2018–19, as amended and supplemented ANDPDCA Order no. 136 Order 136/30 January 2020 of the ANDPDCA President on the Regulation on the organization and functioning of the National Authority for the Rights of Persons with Disabilities, Children and Adoption 288 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Annex 3. NGOs for persons with disabilities in Romania Setting up and operating NGOs in Romania is • Romanian National Association of the Deaf governed by Ordinance no. 26/2000 on associations (ANSR), with 37 branches, representing and foundations. Thus, NGOs are forms of 21,697 adults and 2,019 children with hearing association freely established by individuals or impairments; legal entities to promote civic values, principles • Romanian Association of Persons with Motor of democracy, and the rule of law. There are three Neuron Disabilities (AHNR), with 8 member forms of association under Ordinance no. 26/2000: associations in the counties of Arad, Argeș, associations, foundations, and federations. Caraș-Severin, Cluj, Hunedoara, Ialomița, The Romanian movement for persons with Mehedinți, Sălaj; disabilities includes organizations representing • Romanian Association of Persons with Muscular persons with disabilities according to the type of Dystrophy, representing the interest of 35,000 disability—physical, visual, auditory, intellectual, persons diagnosed with forms of muscular rare diseases, chronic diseases, HIV/AIDS, etc.; dystrophy; organizations for persons with disabilities ran by • Romanian Association of Blind Disabled the parents of these persons; and organizations Veterans (AIRNR); that provide social or rehabilitation services to persons with disabilities. The main role of these • National Information and Cooperation Network organizations is to promote and protect the rights for the Inclusion of Children and Young Persons of persons with disabilities in the fight to eliminate with Special Educational Needs (RENINCO barriers to education, health care, employment, and Association), with 16 member organizations; social participation. • Romanian National Association for Children Disability NGOs focus on several domains: and Adults with Autism, with 7 branches; protection of the rights of children with disabilities; • “Ridică-te și umblă!” (Rise and walk!) protection of the rights of adults with disabilities; Association, with offices in 25 counties. school and social inclusion for children with • Romanian Association Supporting Children disabilities/promoting inclusive education; with Physical Disabilities (ASCHFR) develops provision of services to children, young persons, programs aimed at and involving children and and/or adults with disabilities; provision of services young persons with physical and/or associated for adults with intellectual disabilities; sheltered disabilities and their families to facilitate social homes and independent living; social integration, inclusion. ASCHFR has 9 branches, one in each professional training, and labor market inclusion of of the following counties: Argeș, București, adults with disabilities; etc. Buzău, Călărăși, Giurgiu, Neamț, Olt, Prahova, Below are some of the organizations working in and Vâlcea. the field of disability and social services. We specify that the list is not exhaustive, but rather has an Among the observing members of CNDR are: illustrative role for what the movement of people Down Plus Bucharest Association; Light Into Europe; with disabilities in Romania means. Wings Association; ASPIIR - Association of People with Inflammatory Bowel Diseases in Romania; Organizations Providing Representation CONIL Association; Association of disabled people “Sporting Club” Galati; Association of Patients National Disability Council in Romania (CNDR) with Autoimmune Diseases - APAA; Romanian is a federation made up national representative Foundation for the Visually Impaired “Friends organizations that protect and promote the rights of of the Blind”; Maternity, Advocacy, Medicine, persons with disabilities. CNDR contains member Education Association M.A.M.E .; ENABLE organizations (with voting rights) and a network Romania Foundation; Romanian Association of of observing members (without voting rights). Full Forensic Psychiatry; THEOEMYDOR Association; members are: Romanian Transplant Association; Federation • Romanian Blind Association (ANR), with 35 of Personal Assistants’ Unions for People with branches, representing 91,569 visually impaired Disabilities; Always Together for People Sports adults and 2,757 children; Association; Romanian Hemophilia Association; Dystonia Association. References I 289 Romanian Blind Association (Asociaţia patients and patient associations to protect and Nevăzătorilor din România) (ANR) is a nationwide promote patient rights. In 2010, COPAC held the nongovernmental organization recognized as a first National Convention of Patient Associations public interest organization under GD no. 1033 of as an opportunity for representatives of patient September 9, 2008, operating under Government associations across Romania to enter dialog with Ordinance no. 26 of January 30, 2000.594 ANR is the authorities. The event is now COPAC’s most registered as legal entity as per Civil Decision 3288 of well-known brand, bringing together over 150 September 27, 1956, issued by the former 23 August representatives of patient associations every year, People’s Tribunal, Bucharest. It is the successor of currently in its ninth year of existence. Some of the the Romanian Blind Society (Societatea Orbilor din COPAC member organizations are: National Union România) founded by Queen Elisabeth of Romania.595 of Organizations of Persons Living with HIV/ The Romanian Blind Association represents the AIDS; Romanian Multiple Sclerosis Association; interests of blind persons across the country, Romanian National Alliance for Rare Diseases; being recognized as an organization representing Romanian Transplant Patients Association; Romanian blind persons both by Romanian Association of Persons with Thalassemia authorities and international organizations of blind Major; Baylor Black Sea Foundation; Romanian persons; it is member of the European Blind Union, Hemophilia Association; Association Supporting World Blind Union, Romanian National Disability Patients with MDR Tuberculosis; Prader Willi Council, and European Disability Forum. Association Romania; Romanian Rare Cancers Romanian Association of the Deaf (Asociația Association; Romanian Oncological Patients Națională a Surzilor din România) (ANSR) is a Association; ART Cluj Transylvanian Association of nongovernmental, independent, nonprofit, Patients with Inflammatory Rheumatic Disorders; politically and religiously nonaffiliated organization, Federation for Rights and Resources for Persons a legal entity with public interest status, protecting on the Autism Spectrum; Copilul Meu Inima Mea and promoting the rights and social, professional, (My Child My Heart) Association; OncoHope cultural and educational interests of persons with Association; Romanian Association of Scleroderma hearing impairments (deaf, deaf-mute, hearing loss) Patients; Association of Children and Young Persons towards social inclusion and equal opportunity. with Diabetes ASCOTID Mureș; Association of To finance its specific activities, the organization Pulmonary Hypertension Patients. receives funding from central and local authorities, Romanian National Alliance for Rare Diseases as well as individuals and legal entities. Given its (ANBRaRo) was established in August 2007 at the purpose, the Romanian National Association of the initiative of Prader Willi Association Romania, as Deaf is an organization representing the interests of part of a project funded by CEE Trust. 32 founding hearing impaired persons across the country, being members joined efforts to create the Alliance— the successor of the Romanian Amicable Society of rare diseases organizations and groups of patients the Deaf-Mute (Societății Amicale a Surdo-muților din with diseases so rare that there was no dedicated România),596 and of the Romanian Popular Republic association. ANBRaRo aims to develop and carry Association of the Deaf-Mute (Asociației Surdo- out lobby and advocacy activities to improve the muților din Republica Populară Română),597 which quality of life for Romanian patients living with amounts to almost one century of activity in the rare diseases. Its purpose is to increase community service of hearing impaired Romanians. responsibility in relation to patients suffering from The Romanian Coalition of Associations of rare diseases through the involvement of social Patients with Chronic Diseases (COPAC) aims actors in the field—the patients, their families, and to support consistent and effective actions by the authorities. Its general objective is to improve the quality of life for Romanian patients living 594 Government Ordinance no. 26 of January 30, 2000 on associations and foundations, published in the Official Gazette of Romania no. 39 of January 31, 2000, as amended and supplemented by Law 246 of July 18, 2005, published in the Official Gazette of Romania no. 656 of July 25, 2005. 595 As evidenced by the records attesting its subsidizing by the state as per the Official Gazette no. 194 of November 27, 1909, and the Memorandum of Association approved by Royal Decree 3159 of November 11, 1910, and published in the Official Gazette no. 180 of November 14, 1910. 596 Constituted under the Memorandum of Association authenticated by Ilfov County, Notary Section, under no. 328 of January 5, 1920. 597 Recognized by Decision of the Council of Ministers no. 1153 of July 20, 1952, and Civil Decision 1909 of August 15, 1953, of Tudor Vladimirescu People’s Tribunal, Bucharest. 290 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM with rare diseases. Members: ASCID – Center for spectrum disorders (ASD) and their families. Information and Improvement of Quality of Life for RO-TSA Network, with over 60 organizations Patients with Muscular Dystrophy and Ventilated focusing on autism, was created as part of the Patients; AntiParkinson Association; “Sufletul project Enhancing Participation of NGOs and Social Lalelelor” (Soul of Tulips) Association for Patients Partners in Promoting Alternative Public Policies with Parkinson’s and Other Neurodegenerative for Children with ASD launched by Help. Disorders; Association of Children with AUTISM ROMANIA is the first association Mitochondrial Diseases; Romanian Association of parents of children with autism in the country, of Children with Hunter Syndrome; Romanian which is not affiliated to FEDRA or RO-TSA, but Association of Cystic Fibrosis; Bucharest Multiple still plays an important role in the movement of Sclerosis Association; Romanian Multiple Sclerosis people with disabilities in Romania. Association (ASMR); DMD Care Association; Cehu National Union of Organizations of Persons Silvaniei Down Syndrome Association; Gaucher Living with HIV/AIDS (UNOPA) is the only Association Romania; Inima Copiilor (Children’s Romanian nongovernmental federation bringing Heart) Association; Mini Debra Association; together organizations of persons living with HIV/ Romanian National Myasthenia Gravis Association; AIDS, focusing on advocacy to promote and protect Association of Little Persons; Romanian Association the rights of Romanians infected and living with of Patients with Hereditary Angioedema; Romanian HIV/AIDS. Association of Patients with Fabry Disease; FLAMA Ceva de Spus (Something to Say) is the self- Association of Patients with Autoinflammatory representation organization of persons with Diseases; Association of Patients with Hemolytic- intellectual and physical disabilities, and it is very uremic Syndrome; Association of Patients with active in the public policy field. Thalassemia Major; Romanian Association of Federation of Organizations of Parents Patients with Neuroendocrine Tumors; Association Caring for Children with Disabilities. Members of Patients with Pulmonary Hypertension; of the Federation: Surâsul Albastru (Blue Smile) Association Parent Project for Research and Association Iași; Enable Association Romania Iași; Assistance in Muscular Dystrophy; Romanian Cutezătorii (The Brave) Association Iași; Star of Association of Patients with Glycogenosis; PKU Hope Foundation Romania; Renașterea Speranței Life Association Romania; Prader Willi Association (Hope Renewed) Association Iași; ANCAAR Iași  ; Romania; Prader Willi Association Bucharest; Romanian National Association of the Deaf – Iași Romanian Association of Patients with Primary branch; Ne Trebuie Speranța (We Need Hope) Immunodefficiencies (ARPID); Romanian Rare Association Botoșani; Mereu Împreună (Always Cancers Association (ARCrare); Romanian Together) 2008 Association Dorohoi; Univers Plus Hemophilia Association; “Fragile People” Romanian Foundation Piatra Neamț; Riana Association Piatra Osteogenesis Imperfecta Association; Romanian Neamț; Luceafărul (Morning Star) Association Peripheral Neuropathy Association; Romanian Piatra Neamț; Dar din Dar (Give and You Shall Spina Bifida and Hydrocephaly Association; SM Receive) Association Hârlău; Vino și Vezi (Come Speromax Alba; SMACare Association (Spinal and See) Association Vaslui; Salut Prieteni (Hello Amyotrophy); Smiling Faces Association Romania; Friends) Association Pașcani; “Pentru Noi” (For Werdnig Hoffman Association; Charcot Marie Tooth Us) Association Bârlad; Căsuța cu Miracole (House Romania Association; Bucuria Copiilor (Children’s with Miracles) Târgu Neamț; Support for Autism Joy) Association; “Mastocytosis Support Romania” Association Bucharest. Association; Williams Syndrome Association Sporting Club Galați Association of Persons Supporting Persons with Williams Syndrome; with Disabilities (APH) has been operating since Foundation for the Protection of Adults with February 1992 under Law 21/1924 amended by Congenital Heart Diseases; Romanian Foundation GD 26/2000 and under other legislation. Sporting for Lysosomal Storage Diseases; Neuro Move CMT; Club Galați APH is a nongovernmental, apolitical Save the Children Organization – Timiș County and humanitarian legal entity. Sporting Club Galați Organization; Romanian Network of Hereditary APH was the first nongovernmental social and Angioedema; Sense International (Romania); sports organization to organize sports competitions Romanian Society of Genetic Medicine. for persons with mobility impairment, Danubius FEDRA (Federation for Rights and Resources Cup, the first one taking place in 1992. Sporting for Persons on the Autistic Spectrum) aims to Club Galați APH has 723 registered members and create and maintain an appropriate environment an accredited day center that provides services to that encourages and supports persons with autism References I 291 around 100 beneficiaries every month. The services representing the interests and rights of persons with are aimed at persons with physical and associated disabilities as provided in international documents, disabilities residing in Galați or in Galați County. especially the UN Convention on the Rights of Persons with disabilities in a crisis situation or at Persons with Disabilities. The Federation includes 5 risk of poverty and/or risk of marginalization founding organizations, and the extended network or exclusion from family and community are of service providers 117 member organizations— given priority as beneficiaries of the center’s free public and private organizations/institutions, services. Persons in crisis situations coming from sheltered facilities, individual offices, as well as rural areas are also given priority, since they have independent or academic experts. It is the network more difficulty accessing these types of services; of service providers with the largest coverage in its accommodation is offered to them throughout the field. According to Dizabnet’s vision, services for period of medical consultation, as well as to students persons with disabilities are key instruments for with disabilities from rural areas who attend classes promoting social inclusion and their improvement over the weekend, driving school students; they and upgrading will contribute substantially to an receive wheelchairs and walkers as donations. increase in the quality of life of Romanians with WINGS (ARIPI) Association represents people disabilities and of community good governance. with mental health problems in Romania. The Alături de Voi (By Your Side) Foundation activities of the association take into account the Romania (ADV) is a nongovernmental organization social reintegration of people who have or have operating as a work integration enterprise, had mental health problems; advocating for the established in 2002 by Holt International Children’s observance of the general, special rights and human Service USA whose mission is social inclusion for dignity of persons who have or have had mental persons with disabilities and other vulnerable health problems; harmonization of legislation groups. ADV Romania is based in Iași and registered in line with WHO and EU recommendations on as a Romanian foundation; it is independent from mental health issues; the involvement of the media government authorities and its assistance and in explaining the complexity of the phenomenon actions are not conditioned by affiliation with generated by the disease; organization of seminars particular ideologies, doctrines, or religions. From in the field of mental health; partnerships with May 2019, ADV Romania has been a full member other NGOs and authorities; involvement of central of the EASPD (European Association of Service and local authorities in community therapy. Providers for Persons with Disabilities), which The Society of Locomotor Disabilities from covers over 15,000 support services for persons Romania carries out activities of socio-professional with disabilities across the European Union. reintegration of adults with locomotor disabilities, ADV Romania has set up 3 social enterprises, specific programs of adapted transport, PC being awarded the prize Social Entrepreneur of operation courses, sports team, rehabilitation, the Year 2016 in the EY Entrepreneur of the Year training and recreation center, theater troupe, international competition. These are: (i) UtilDeco legislative counseling and guidance professional, was established in 2008 and has created over 100 tourism. The organization publishes the only jobs over time, of which a minimum 40 percent for monthly magazine in the country made entirely by persons with disabilities. It provides document people with disabilities “The Winner”. archiving and storage services/ protective equipment manufacturing services/ online shop; Organizations Providing Social Services (ii) JobDirect was established in May 2016 as an Employment and Workplace Assistance Agency. Federation of Non-Governmental Organizations It offers assessment, examination, counseling, Providing Social Services (FONSS) currently professional training, mediation and labor market numbers 37 nongovernmental organizations, inclusion services, namely job coaching, to persons Romanian legal entities that provide social services with disabilities or members of vulnerable groups; to vulnerable groups, all of them recognized for and (iii) WISE.travel was established in August their activities in their respective fields. 2016, originally as UtilDeco Travel; since June 2018, Dizabnet Network, represented by Dizabnet it has been issued a new license as tour operator Federation, was established in 2007 and works as under the brand name WISE.travel. It offers travel a communication and representation platform for and event organization services, donating 50 social services providers in the field of disability, percent of its profit to NGOs and Social Enterprises. complementing the activities of organizations 292 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Romanian Association of Persons with Estuar Foundation was created in September Disabilities (APHR) is a nongovernmental, 1993 by the Scottish association Penumbra and the community-oriented, apolitical organization, an Romanian League for Mental Health, being the autonomous legal entity, operating in the socio- first Romanian organization to build a network cultural, educational, sports and humanitarian of community day and home care services fields, for an indeterminate period of time, with accredited and recognized locally, nationally and public interest status, promoting the principles of internationally, aimed at Romanian adults with freedom and democracy. To carry out its activities, it mental health issues. Estuar Foundation is a member receives funding from central and local authorities of: Mental Health Europe; FOND (Romanian and from individuals and legal entities. The Federation of Non-Governmental Organizations for association has also set up and manages the PRO Development); Romanian Good Practice Coalition; MED Home Health Care Center. NGO Coalition for Structural Funds. Motivation Romania Foundation was Betania Association in Bacău. Betania established in 1995 to provide assistance to Association was granted public interest status in Romanian children and adults with disabilities. It September 2004,598 being the first organization to provides services covering a wide range of needs, obtain this status in Bacău County. This came as from adapted equipment for various mobility a recognition of both the role the Association has impairments to medical rehabilitation and coaching played in the community and the quality of the for independent living provided by a coach in services provided to a diversity of beneficiaries. a wheelchair. On February 15, 2020, Motivation Over time the organization has created a number Romania Foundation celebrated 25 years of running of services, some of them available for the first programs to help Romanian children and adults time nationally or at least regionally, such as the with disabilities—25 years, 25,000 lives changed Center for the Inclusion of Young Persons or the for the better. Some of Motivation’s wheelchair Dolphin Center for children with autism. Betania user beneficiaries have become independent living Association has been providing community support coaches, technicians assessing, prescribing, and for two decades, with thousands of beneficiaries customizing wheelchairs, Motivation regional team in humanitarian, educational and health-related managers or managers in the organization. projects. Betania Association is accredited by the Hope Habilitation Foundation Timișoara is a Accreditation Committee of Bacău County as nongovernmental organization working for over provider of the following social services: Center for 20 years to provide assistance to children with the Inclusion of Young Persons; Delfinul (Dolphin) special needs and their families. Its aim is to ensure Center for children with autism; Center for inclusive education for these children in mainstream Counseling, Information and Support to families schools and kindergartens and to change attitudes in crisis situations; Center for Assistance to Human towards and stereotypes about them. Over time the Trafficking Victims. In addition, Delfinul (Dolphin) Foundation acted locally, supporting the children by Center is certified to provide specialized social providing direct services aimed at children, parents, services. and teaching staff. In the past years the Foundation Star of Hope Association, a nongovernmental contributed to drafting the Methodology for organization with offices in Iași, was established in establishing, organizing and operating Habilitation 1998 with support from the Swedish organization and Educational Support Centers (C.A.S.E.) for Star of Hope International. Star of Hope Sweden has children and young people. been present in Romania as early as the days of the Pro ACT Suport Association was established 1989 Revolution (in Timișoara) and financing Star in April 2011, its aim being to improve the quality of Hope Romania ever since by raising both private of life for vulnerable persons by providing social funding and funding from the Swedish government services and promoting good practice in the socio- (through SMC/SIDA). Star of Hope Romania is a cultural and educational fields. partner of Star of Hope Norway and Star of Hope USA. 598 Under GD no. 1481/2004, published in the Official Gazette no. 848 of September 15, 2004. References I 293 Annex 4. Outreach Annex 4. Table 1: Disability information available on municipality (SPAS) and NGO websites, from 39 counties and 6 districts of Bucharest Yes, full information on municipalities’ websites, Yes, full information on to the best knowledge NGO websites, to the of … best knowledge of … Information about … SECPAH SECC SECPAH SECC Total number of respondents, out of which …: 201 187 201 187 (%) 100 100 100 100 a. What does the file contain and how should it be prepared 64 37 19 10 b. How and where the application and file are submitted 66 37 20 9 c. Information about how to access SECPAH 59 20 14 6 d. What does the comprehensive assessment consist of, and how is this done 33 21 10 6 e. How are the degree and type of disability established 22 13 10 3 f. Which are the related benefits and services 47 22 12 8 g. How to challenge the disability certificate, including how and where this can be challenged, and how to apply for, and obtain, legal assistance 25 17 7 7 None of the above 17 9 60 27 All of the above 16 5 4 1 Do not know/did not answer on this topic 12 52 12 52 Source: Opinion survey Q2B: Practices and experiences of the practitioners working in the comprehensive disability assessment services for adults (SECPAH, N=201) and children (SECC, N=187), from 39 counties and 6 districts of Bucharest, January–February 2021. Annex 4. Table 2: SPAS and SECPAH that provide standardized application forms on the municipality/DGASPC websites (number of SPAS/SECPAH) URBAN RURAL COUNTY Total SECPAH Larger Small Communes Communes Communes sample (within cities urban type 1 type 2 type 3 of SPAS DGASPC) Total number of cases, of which … Posted on the municipality/ 18 10 12 15 16 71 36 DGASPC websites the standard application form … a. for adults (GD no. 430/2008, 10 3 3 5 9 30 36 Art. 6) b. for children (Joint Order no. 10 4 3 6 9 32 31 1985/1305/5805/2016) c. for social inquiry (for SPAS) 13 6 5 7 9 40 Source: SPAS survey with responses from 26 counties, January–February 2021. Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH, N=36) and for children (SECC, N=32), from 32 counties and 4 districts of Bucharest, January–February 2021. Notes: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all types; communes type 1 = communes developed and close to the county seat; communes type 2 = other communes (typical rural localities); communes type 3 = communes underdeveloped and remote. 294 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Annex 4. Table 3: SPAS and SECPAH with a communication procedure (number of SPAS/SECPAH) URBAN RURAL COUNTY Total SECPAH Larger Small Communes Communes Communes sample (within cities urban type 1 type 2 type 3 of SPAS DGASPC) Total number of cases, of which … Have an approved procedure, 18 10 12 15 16 71 36 or a paragraph of a general procedure concerning provision of … a. information about the 26 disability assessment b. information on social risks and the rights of persons with 9 0 3 2 2 16 disabilities If YES Provided the procedure in the 6 0 1 1 1 9 9 survey response package Source: SPAS survey with responses from 26 counties, January–February 2021. Institutional survey Q2A: Facts and indicators regarding the activity of the services for comprehensive disability assessment for adults (SECPAH, N=36) and for children (SECC, N=32), from 32 counties and 4 districts of Bucharest, January–February 2021. Notes: Small urban = small cities up to 20,000 inhabitants as of January 1, 2020; larger cities = cities with >20,000 inhabitants as of January 1, 2020; rural = communes of all types; communes type 1 = communes developed and close to the county seat; communes type 2 = other communes (typical rural localities); communes type 3 = communes underdeveloped and remote. References I 295 Annex 5. Comprehensive assessment by SECPAH Annex 5. Table 1: Medical assessment from a psychosocial perspective, according to SECPAH specialists On a scale of 1 to 10: Average Standard N deviation STRUCTURES AND FUNCTIONS EVM16. To what extent do the medical documents on file allow a good assessment 8.08 1.29 157 of the impairments to body structures and body functions (which do you consider close to reality)? ACTIVITY LIMITATIONS EVM18. To what extent do the medical documents on file allow a good assessment 7.72 1.64 158 of the limitations of the person’s activity (comprehensive, sufficiently detailed, which do you consider close to reality)? Source: Opinion survey Q2B: Practices and experiences of specialists working within the service for the comprehensive assessment of adults with disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. Annex 5. Table 2: Psychological assessment from a psychosocial perspective, according to SECPAH specialists On a scale of 1 to 10: Average Standard N deviation EVP11. To what extent do the documents on files allow a good assessment of 7.72 1.89 150 functioning from a psychosocial perspective (activities and participation)? EVP12. But more specifically, to what extent do the tools used by the psychologist allow an assessment that you consider complete, detailed, close to reality, of psychosomatic aspects, behavior, personal and social autonomy of the person? ACTIVITY LIMITATIONS 1. in a standardized context (capacity) 7.02 2.81 108 2. in their living environment (performance) 7.11 3.17 100 PARTICIPATION RESTRICTIONS 4. General tasks and requests 7.29 2.79 102 5. Communication 7.50 2.81 109 9. Relationships and interactions with others 7.55 2.79 110 Source: Opinion survey Q2B: Practices and experiences of specialists working within the service for the comprehensive assessment of adults with disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. 296 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Annex 5. Table 3: Vocational or professional skills assessment from a psychosocial perspective, according to SECPAH specialists EVV8. On a scale of 1 to 10, to what extent do the vocational assessment and Average Standard N professional guidance documents on file allow an accurate (detailed, close to deviation reality) assessment regarding …? ACTIVITY LIMITATIONS 1. in a standardized context (capacity) 5.87 2.92 137 2. in their living environment (performance) 5.69 2.90 138 PARTICIPATION RESTRICTIONS RELATED TO: 3. Learning and applying knowledge 5.78 3.11 137 4. General tasks and requests 5.67 3.00 137 9. Major areas of life: work, education 6.01 2.97 138 ENVIRONMENTAL FACTORS THAT CAN ACT AS BARRIERS OR FACILITATORS on the labor market: 11. Products and technologies 5.39 3.14 140 12. The person’s natural environment, environmental changes 5.37 3.29 140 13. Support and human relations 6.36 3.06 140 14. Attitudes 5.27 3.43 140 15. Support services, systems or relevant occupational policies 4.81 3.25 140 Source: Opinion survey Q2B: Practices and experiences of specialists working within the service for the comprehensive assessment of adults with disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. Annex 5. Table 4: Education level assessment from a psychosocial perspective, according to SECPAH specialists EVE8. On a scale of 1 to 10, to what extent do the documents on file allow an Average Standard N accurate (detailed, close to reality) assessment regarding …? deviation PARTICIPATION RESTRICTIONS RELATED TO: 3. Learning and applying knowledge 5.83 3.10 140 9. Major areas of life: education 6.00 2.99 134 ENVIRONMENTAL FACTORS THAT CAN ACT AS BARRIERS OR FACILITATORS in education: 11. Products and technologies 5.79 3.11 140 12. The person’s natural environment, environmental changes 5.56 3.12 140 13. Support and human relations 6.52 2.84 140 14. Attitudes 6.17 3.17 140 15. Support services, systems or relevant educational policies 5.76 3.22 140 Source: Opinion survey Q2B: Practices and experiences of specialists working within the service for the comprehensive assessment of adults with disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. References I 297 Annex 5. Table 5: Assessment of social integration level and skills from a psychosocial perspective, according to SECPAH specialists URBAN RURAL On a scale of 1 to 10, to what extent are the data obtained from Avg. Std. N Avg. Std. N the social inquiries sent by SPAS sufficient to allow a detailed and dev. dev. accurate assessment of the level of social integration (degree of dependency) …? EVA5. Specifically, to what extent do the available data allow a good assessment of: Mobility — person with disabilities’ mobility needs, and the aids needed 7.9 1.9 167 7.3 2.1 166 with assistive devices and systems Self-care — autonomy in daily activities of body hygiene, intimate 8.4 1.7 167 7.6 1.9 166 hygiene, dressing/undressing, serving and feeding Self-support — household activities, i.e. cooking, washing, shopping, 8.3 1.6 169 7.5 1.9 167 paying bills, etc. Communication — use of means of communication 8.3 1.8 168 7.6 2.0 166 Interactions with others 8.0 1.9 169 7.3 2.1 167 Participation in education, work, leisure activities 7.4 2.1 169 6.7 2.3 167 Civic, cultural, other community activities 6.8 2.5 169 6.0 2.6 167 EVA7. But more specifically, for a possible argumentation of the need for institutionalization or home care, to what extent do the data on file allow a correct assessment (in line with reality) regarding the person’s participation in: Intimate relationships and support networks — The network of 7.7 2.0 170 7.2 2.1 168 family, friends and neighbors, the support they provide Household life — Household activities, food preparation, cleaning, 8.2 1.6 170 7.7 1.8 168 shopping, income management, complying with medical advice Community, social and civic life — Use of transport means, leisure, 7.3 2.2 171 6.8 2.2 169 civic, cultural and/or sporting activities Attitudes — Family, neighborhood, and community attitudes towards persons with disabilities and the need for protection against 6.8 2.7 170 6.2 2.7 168 discrimination Source: Opinion survey Q2B: Practices and experiences of specialists working within the service for the comprehensive assessment of adults with disabilities (SECPAH), in 39 counties and 6 districts of Bucharest, January–February 2021. Notes: Avg = average; Std. dev.=standard deviation. 298 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Annex 6. Example of an Individual Service Plan (PIS) References I 299 Annex 7. Profile of persons who filed appeals and won Profile of those who filed and won appeals against the disability degree and type certificate, November 2020, case study for Suceava county (% of total) W2. Appeals with W1. a final ruling Total appeals in favor of the filed, out of person with which: disability: CH5. Total number of appeals 187 51 100% 100% DEGREE a. minor 0.0 0.0 b. medium 6.4 3.9 c. marked 25.7 27.5 d. severe 17.1 17.6 e. severe, with personal assistant 50.8 51.0 TYPE aa. physical deficiency (code 1) 46.0 47.1 bb. somatic deficiency (code 2) 14.4 23.5 cc. hearing deficiency (code 3) 0.5 0.0 dd. visual deficiency (code 4) 5.9 3.9 ee. mental deficiency (code 5) 15.0 11.8 ff. psychic deficiency (code 6) 4.8 7.8 gg. associated deficiency (code 7) 9.1 5.9 hh. HIV/AIDS (code 8) 0.0 0.0 ii. rare diseases (code 9) 3.7 0.0 jj. deaf-blindness (code 10) 0.5 0.0 VALIDITY TERM x. 1 year 96.3 86.3 y. 2 years 0.0 0.0 z. permanent 3.7 13.7 RESIDENCE AREA u. urban 35.3 35.3 r. rural 64.7 64.7 GENDER f. female 44.9 47.1 m. male 55.1 52.9 AGE v1. 18–20 years 1.1 9.8 v2. 21–26 years 10.2 3.9 v3. 27–34 years 11.2 7.8 v4. 35–44 years 8.6 17.6 v5. 45–54 years 14.4 27.5 300 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM W2. Appeals with W1. a final ruling Total appeals in favor of the filed, out of person with which: disability: v6. 55–64 years 17.1 13.7 v7. 65–74 years 20.3 15.7 v8. 75+ years old 17.1 3.9 COMMUNITY GROUPS g0. total persons with disabilities in the family 67.9 88.2 g1. homeless persons 0.0 0.0 g2. persons under interdiction – with a family member as guardian 6.4 9.8 g3. persons under interdiction – with the local public authority as guardian 0.0 0.0 g4. persons under interdiction – with an NGO as guardian 0.0 0.0 g5. persons with maximum 8 grades education 16.6 43.1 g6. immobilized persons 19.8 29.4 INSTITUTIONALIZED PERSONS g7. persons under a protection measure* 0.0 0.0 g8. persons hospitalized in psychiatric hospitals 0.0 0.0 g9. persons in prisons 0.0 0.0 LAWYER ASSISTANCE CHA4a. no lawyer assistance 50.8 62.7 CHA4b. free public lawyer assistance 3.7 3.9 CHA4c. with chosen counsel (selected by the person) 45.5 33.3 Source: Institutional survey Q3D: Appeals against the disability degree and disability type certificates (CEPAH Secretariat), January-February 2021. Notes: The significantly higher values are marked in yellow. *Individuals with protection measure irrespective of the type of placement service (centres, protected housing, etc.) References I 301 Annex 8. Support measures for transitioning young people with disabilities to adult life Below are the main support measures, as set out in Order no. 1985/1305/5805/2016. Art. 55 (4) The overall objective of the habilitation-rehabilitation plan is personal and social development, maximization of potential, acquisition of personal and social autonomy of the child for social inclusion. In the case of children over the age of 16, the objective of the plan will also include the transition to adult life. In the case of children in palliative care, at home care or care in hospice-type center, the objective of the plan will include maintaining the quality of life/slowing the deterioration of health. Art. 65 (6) (3) Support measures for the transition from puberty to adolescence can be: a) preparation of the child through information appropriate to age, maturity degree and type of disability by family and teachers; b) health education in the form of an optional subject or offered by other educational, health care or social service providers; c) counseling from the educational counselor or other educational, health care or social service providers; d) development of independent living skills within services or courses. (4) Support measures for the transition from middle school to high school or vocational school may be those referred to in paragraph (3), plus school and professional orientation. (6) Support measures for the transition to adult life may be those referred to in paragraph (4), plus measures aimed at the transition to the protection system for adults with disabilities: a) preparation of the child/young person through information appropriate to the age, degree of maturity and type of disability by the family and the case manager, including aspects relating to the granting of the disability degree to adults with disabilities; b) support for parents/legal representative for the preparation of the necessary documents for the granting of disability degree for adults with disabilities; c) mediation of the parents`/legal representatives` relationship with the Service for the Complex Evaluation of Adults with Disabilities, hereinafter referred to as SECPAH; d) visits to the residential center or to the home of the professional personal assistant by young people who are about to leave the special child protection system and be transferred to the protection system for adults with disabilities. Art. 83 (1) The habilitation-rehabilitation plan shall be completed upon expiration of the disability certificate, and the tailored service plan shall be completed upon expiration of the school and professional orientation certificate. (2) Closure of the case shall take place upon expiry of the certificate, but may also take place in the following situations: a) change of residence in another county/sector of Bucharest; b) transition to adult life; c) refusal of the parents/legal representative to collaborate with the competent authorities to classify the child as disabled and/or to implement a habilitation-rehabilitation plan; d) at the request of the parents/legal representative in cases of disability degree classification; e) if the parents/legal representative no longer request the complex reassessment in cases of disability degree classification; f ) death of the child. Note: The first measures—Art. 65, para. (3) and (4)—are taken into account not only in the transition phase to adult life, but also before the other transitional stages in the child’s life. 302 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM List of figures and tables Tables Table 1: The SPAS survey 27 Table 2: Institutional surveys regarding disability assessment and determination - overview of 29 types and response rates Table 3: Information on disability available on DGASPC websites 59 Table 4: Accessibility of offline communication 65 Table 5: Number of SPAS/SECPAH that collect information about applicants’ obligation to pay for 73 medical documents Table 6: Documents collected in different localities prior to the mandatory social inquiry 79 Table 7: Methods for conducting and average duration of the social inquiry needed for disability 81 assessment, by type of locality Table 8: Methods for conducting the comprehensive disability assessment 102 Table 9: How SECPAH recommendations and proposals are determined, according to SECPAH 118 chiefs (number of counties) Table 10: How are CEPAH decisions determined, according to CEPAH presidents (number) 149 Table 11: Share of SPAS that comply with the indicative staff structure provisioned by the law (%) 238 Table 12: In a standard hypothetical case of a person applying for classification in a degree and type 249 of disability, how does the interaction with the specialists of SECPAH and, respectively, of SECC, usually unfold? Table 13: The quality of data from the SECPAH/CEPAH databases using selected variables 255 Table 14: Comparison of monthly payments for CEPAH members, November 2020 262 Annex 4. Table 1: Disability information available on municipality (SPAS) and NGO websites, from 294 39 counties and 6 districts of Bucharest Annex 4. Table 2: SPAS and SECPAH that provide standardized application forms on the 294 municipality/DGASPC websites (number of SPAS/SECPAH) Annex 4. Table 3: SPAS and SECPAH with a communication procedure (number of SPAS/SECPAH) 295 Annex 5. Table 1: Medical assessment from a psychosocial perspective, according to SECPAH 296 specialists Annex 5. Table 2: Psychological assessment from a psychosocial perspective, according to SECPAH 296 specialists Annex 5. Table 3: Vocational or professional skills assessment from a psychosocial perspective, 297 according to SECPAH specialists Annex 5. Table 4: Education level assessment from a psychosocial perspective, according to 297 SECPAH specialists Annex 5. Table 5: Assessment of social integration level and skills from a psychosocial perspective, 298 according to SECPAH specialists List of figures & tables I 303 Figures Figure 1: Profile of the 61 interviewed adults with disabilities 32 Figure 2: Disability statistics from Eurostat and the Ministry of Labor and Social Protection 42 Figure 3: Sources of initial information for persons requesting a comprehensive disability 56 evaluation (%) Figure 4: Adaptation for persons with visual impairment of the information found on the 62 DGASPC websites Figure 5: Number of SECPAH that adapted their communication procedures regarding 64 information about assessment to vulnerable groups Figure 6: Overall statistics regarding the monthly in- and out-flows (number of applications 71 submitted and accepted or rejected/not accepted) by the intake and registration steps (number of persons) Figure 7: Average number of days in which a person applying for social inquiry may gather all 80 requested documents, as estimated by the surveyed SPAS (number) Figure 8: Distribution of social inquiries according to how they were conducted (% of total) 82 Figure 9: Share of social inquiries for disability assessment carried out for adults and children in 85 compliance with the framework model (% of total social inquiries) Figure 10: Total number of files registered for disability assessment in selected counties, in 88 November 2019 vs. November 2020 Figure 11: How application files are transferred from SPAS to SECPAH/SECC/DGASPC, in 89 February 2021 (number of SPAS) Figure 12: Distribution of applicants for disability assessment, according to scenario used for 90 SECPAH registration (% of total in November 2020) Figure 13: The result of the initial verification of application files, admitted and rejected by county, 92 November 2020 (%) Figure 14: Number of SECPAH that adapted their submission and registration procedures for 92 vulnerable groups (number of counties) Figure 15: Specializations of the SECPAH chiefs (number of counties) 99 Figure 16: Multidisciplinary teamwork and interaction between assessors and applicants, 100 according to SECPAH chiefs (number of counties) Figure 17: Number of SECPAH that adapted the comprehensive assessment procedure for 102 vulnerable groups (number of counties) Figure 18: Areas of comprehensive disability assessment, according to SECPAH chiefs (number of 105 counties) Figure 19: Share of files with mismatch between the assessment in the specialized medical 107 practitioner’s report and the SECPAH physician’s assessment, based on the documents on file, estimates of SECPAH chiefs, November 2020 (% of total files assessed) Figure 20: Psychological assessment, according to SECPAH chiefs (number of counties) 108 Figure 21: Who performs vocational or professional skills assessment, according to SECPAH chiefs 112 (number of counties) Figure 22: Assessment of the education level, according to SECPAH chiefs (number of counties) 114 304 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Figure 23: The extent to which data obtained from social inquiries sent by rural and urban SPASs 116 are sufficient to allow detailed and accurate assessment of social integration level (degree of dependency), according to SECPAH specialists, average values, on a scale of 1 (none) to 10 (total) Figure 24: Change of practices in the organization of CEPAH meetings, during the COVID-19 136 pandemic, by type of meetings, according to the estimates provided by CEPAH presidents (number of meetings/files/minutes) Figure 25: Average time spent by the Commission on each case, in minutes 137 Figure 26: Minutes of a 3-hour CEPAH meeting involving decisions for 65 people with disabilities 138 Figure 27: Number of CEPAH that adapted for vulnerable groups the procedure for classifying 140 adults in degree and type of deficiency (number of counties) Figure 28: Opinions of CEPAH members on the comprehensive assessment tools used by SECPAH 142 (average scores on a scale from 1-none to 10-total) Figure 29: Management of files during the phase of disability determination, according to CEPAH 143 presidents (number) Figure 30: Main sources of information for verifying the medical-psychosocial criteria for the 144 classification of the deficiency degree and type, according to CEPAH presidents (number) Figure 31: Medical-psychosocial criteria predominantly used by CEPAH, according to CEPAH 146 presidents (number) Figure 32: However, according to the dominant opinion among CEPAH members, currently, the 148 medical model is still dominant in classifying the degree and type of disability for adults Figure 33: The share of CEPAH members confirming the existence of exclusion and inclusion errors 150 within the process of disability determination, by type of error source (%) Figure 34: Results of the disability determination process in Romania, by county, in 2019 153 Figure 35: Distribution of certificates according to the deficiency degree, by county, in 2019 154 Figure 36: Distribution of certificates by validity period, by county, in 2019 155 Figure 37: Statistics from core phase 3, disability assessment, to core phase 5, identifying the needs 165 for services, November 2020 (number of applicants/beneficiaries) Figure 38: Link between PIRIS and the comprehensive assessment report: Factual data (number) 166 Figure 39: Link between PIRIS and the comprehensive assessment report: Opinions (average 167 values on a scale of 1–10) Figure 40: Two examples of PIRIS 169 Figure 41: Total number of PIS for selected counties, by the SECPAH strategy regarding drafting 171 PIS Figure 42: On a scale of 1 (not at all) to 10 (completely), to what extent do the services and activities 172 included in PIS satisfy … (average scores) Figure 43: Key institutional actors’ opinions regarding degree of accomplishment of services and 176 activities in PIS/PIRIS (average values) Figure 44: Ratio between adults with disabilities and PRM physicians, by county 178 Figure 45: Distribution of appeals on the disability certificates per counties, November 2019 and 184 November 2020 (number of appeals/month) List of figures & tables I 305 Figure 46: Practitioners’ opinions regarding two possible measures to improve information 189 regarding the appeal, on a scale of 1 to 10 (average scores) Figure 47: Practitioners’ opinions about introducing a standard template for substantiating the 203 disability degree decision, based on which the appeal against the disability certificate could be formulated in court, on a scale of 1 to 10 (average scores) Figure 48: Persons who filed and won appeals against the disability certificate, by age, November 212 2020, case study for Suceava county (% of total) Figure 49: Informing young people with disabilities about the transition to adult life (%) 219 Figure 50: Issues that negatively affect continuity of services and life for children with disabilities 221 and their families, according to practitioners Figure 51: Examples of cases and likely resolutions: comparison of the commissions for children 226 (CPC) and adults (CEPAH) (number of responses from CEPAH/CPC presidents) Figure 52: Familiarity with criteria for the classification of the disability degree, as self-assessed by 227 CEPAH and CPC members (average values on a scale from 1-none to 10-total) Figure 53: Preferred scenarios to ensure a smooth transition from childhood to adulthood for 231 young people with disabilities, according to CEPAH and CPC members (%) Figure 54: Distribution of SPAS sample by organization form and number of staff (%) 236 Figure 55: SPAS personnel by level of education, specialization, and attribution (%) 237 Figure 56: How much do SPASs know about persons with disabilities who live in their locality 241 (number of SPAS) Figure 57: Difference between counties regarding the official population of adults with disabilities 243 and the number of SECPAH specialists Figure 58: SECPAH staff by specialization 245 Figure 59: Division of tasks within the SECPAH team (% of category) 246 Figure 60: Workload per SECPAH specialist (min, max, and average number of assessed files per 247 year) Figure 61: Share of files assessed based on the document review, possibly combined with 249 interviews by phone, WhatsApp or Skype and that do not involve face-to-face interaction between SECPAH team and applicant, by county (% of total assessed files) Figure 62: Main training needs for SECPAH specialists (%) 251 Figure 63: Work procedures (% of SECPAH, % of SECPAH members, and average score of 252 usefulness) Figure 64: CEPAH human resources by profession and position within the commission (number of 257 persons) Figure 65: CEPAH workload per month 262 Figure 66: The number of personnel of the SECPAH and the CEPAH secretariat in selected 264 counties, by the CEPAH presidents’ satisfaction * with the number of personnel of the secretariat Figure 67: Work procedures (% of CEPAH, % of CEPAH members, and average score of usefulness) 265 306 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Infographics Infographic 1: Background research at a glance 26 Infographic 2: Overall statistics on the reference population groups corresponding to the Romanian’s 45 disability assessment system, by core implementation phase, for November 2020 Infographic 3: Overview of activities regarding the ICF implementation in Romania 50 Boxes Box 1: A short history of Romania’s two disability systems 34 Box 2: ICF, ICD-10 and WHODAS 2.0 as WHO key instruments for modern disability assessment 47 Box 3: Taiwan’s disability assessment 53 Box 4: Example of a SECPAH communication procedure 61 Box 5: Hopes for website accessibility, expressed by persons with disabilities and organizations that 66 represent them Box 6: Example of disability degree classification 121 Box 7: Examples of Activities–Limitations/Participation–Needs component 122 Box 8: Examples of Activities–Limitations/Participation–Needs used to provide a very detailed 126 description of work capacity and workplace needs Box 9: Example of good practice: Operational procedure regarding appeals at CEPAH Sălaj 187 Box 10: Excerpt from a final court judgment 202 Box 11: Excerpt from a final court judgment 204 Box 12: Excerpt from a final court judgment 205 Box 13: Legislation governing the disability determination in children and youth 218 Box 14: Different interpretations of the legal provisions in GD no. 797/2017 provided by SPAS 239 representatives Box 15: An example of how workload is calculated per SECPAH member 248 Box 16: Reasons to include physicians specialized in physical and rehabilitation medicine (PRM) in 258 CEPAH and SECPAH Flowcharts Flowchart 1: Key institutional actors involved in Romania’s disability assessment system 38 Flowchart 2: Core implementation phases of disability assessment in Romania 44 Flowchart 3: The main steps of the intake and registration phase for application for disability 70 assessment Flowchart 4: Overview of the registration steps 87 Flowchart 5: Identifying the persons with disabilities’ needs for services and links with the other core 164 phases: An overview Flowchart 6: Statistics regarding appeals of November 2019, in 10 counties 210 Flowchart 7: Assessment of the degree of disability, children and adults 223 List of figures & tables I 307 Maps Map 1: Geographical coverage of the background research (number of participants by county) 25 Map 2: Discrepancies between counties regarding number of adults with disabilities registered in the 43 county Map 3: Discrepancies between counties regarding the proportion of total persons with disabilities in 43 total population of the county (%) 308 I ROMANIA DIAGNOSIS REPORT ON THE CURRENT DISABILITY ASSESSMENT SYSTEM Project co-funded from the European Social Fund through the Administrative Capacity Operational Program 2014-2020. Project title: ”Modernizing the Disability Assessment System in Romania” Code SIPOCA/ SMIS2014+: 719/129751 Beneficiary: Ministry of Labor and Social Protection Publishing date: October 2021 The content of this material does not necessarily represent the official position of the European Union or of the Romanian Government. Material distributed for free.