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Study on Deinstitutionalization of Children and Adults with Disabilities in Europe and Eurasia STUDY ON DEINSTITUTIONALIZATION OF CHILDREN AND ADULTS WITH DISABILITIES IN EUROPE AND EURASIA FINAL REPORT DECEMBER 2013 This publication was produced for review by the United States Agency for International Development. It was prepared by the European Network for Independent Living for JBS International. i STUDY ON DEINSTITUTIONALIZATION OF CHILDREN AND ADULTS WITH DISABILITIES IN EUROPE AND EURASIA FINAL REPORT Prepared by The European Network on Independent Living for JBS International, Inc. DISCLAIMER The authors’ views expressed in this publication do not necessarily reflect the views of the United States Agency for International Development or the United States Government. Study on Deinstitutionalization of Children and Adults with Disabilities in Europe and Eurasia LIST OF ACRONYMS CEE/CIS Central and Eastern Europe/Commonwealth of Independent States CEG Common European Guidelines on the Transition from Institutional to Community-based Care CRC UN Convention on the Rights of the Child CRPD UN Convention on the Rights of Persons with Disabilities DALY Disability-Adjusted Life Year DECLOC Deinstitutionalization and community living – outcomes and costs: report of a European Study DI Deinstitutionalization DRI Disability Rights International EC European Commission ECCL European Coalition for Community Living EU European Union FB&H Federation of Bosnia and Herzegovina HRC UN Human Rights Committee ICCPR International Covenant on Civil and Political Rights M&E Monitoring and Evaluation OHCHR Office of the High Commissioner for Human Rights PA Personal Assistance RS Republika Srpska TransMonEE Transformative Monitoring for Enhanced Equity YLD Years Lost to Disability YLL Years of Lost Life i Study on Deinstitutionalization of Children and Adults with Disabilities in Europe and Eurasia TABLE OF CONTENTS LIST OF ACRONYMS ................................................................................................................... i EXECUTIVE SUMMARY............................................................................................................. iv 1. INTRODUCTION ......................................................................................................................................... iv 1.1 PURPOSE AND SCOPE OF THIS REPORT ....................................................................................................................... iv 1.2 STUDY METHODOLOGY ...................................................................................................................................................... iv 2. CURRENT STATUS OF PEOPLE WITH DISABILITIES IN THE REGION ..................................... iv 3. DEVELOPING ALTERNATIVES TO INSTITUTIONAL CARE ........................................................... v 3.1 TEN ELEMENTS OF DEINSTITUTIONALIZATION ........................................................................................................ v 3.2 FRAMEWORK FOR ANALYSIS .............................................................................................................................................. v 4. PROGRESS AND CHALLENGES IN THE TRANSITION TO COMMUNITY LIVING ............... vi 5. CONCLUSIONS AND RECOMMENDATIONS .................................................................................. vii 1. INTRODUCTION .................................................................................................................... 1 1.1 SCOPE AND PURPOSE OF THIS REPORT ............................................................................................ 2 1.2 STUDY METHODOLOGY .......................................................................................................................... 2 1.3 UNDERSTANDING KEY TERMS .............................................................................................................. 2 1.4 GUIDELINES FOR THE TRANSITION TO COMMUNITY-BASED CARE .................................... 3 1.5 FRAMEWORK FOR ANALYSIS OF THE TRANSITION TO COMMUNITY-BASED CARE .... 4 2. CURRENT STATUS OF PEOPLE WITH DISABILITIES IN THE E&E REGION ............. 6 2.1 PREVALENCE OF DISABILITY ................................................................................................................... 6 2.2 PREVALENCE OF INSTITUTIONALIZATION...................................................................................... 7 2.3 FACTORS LEADING TO THE INSTITUTIONALIZATION OF PEOPLE WITH DISABILITIES, HIGHLIGHTING CHILDREN AND YOUTH ............................................................................................... 8 2.4 HUMAN RIGHTS ABUSES WITHIN AND RELATED TO INSTITUTIONS ................................ 10 2.4.1 PUBLIC POLICIES AND CULTURAL NORMS ............................................................................................................. 11 2.4.2 THE PERMANENT NEGATIVE EFFECTS OF INSTITUTIONALIZATION.......................................................... 12 2.5 CONCLUSION: THE IMPERATIVE TO DEVELOP ALTERNATIVES TO INSTITUTIONAL CARE ...................................................................................................................................................................... 13 3. FRAMEWORK FOR PROMOTING COMMUNITY LIVING .............................................. 14 3.1 LEGAL AND POLICY FRAMEWORK (PILLAR 1) .............................................................................. 14 3.1.1 MAKE THE CASE FOR DEVELOPING COMMUNITY-BASED ALTERNATIVES TO INSTITUTIONS (CEG1).................................................................................................................................................................................................. 14 3.1.2 ASSESS THE SITUATION (CEG2) .................................................................................................................................... 15 3.1.3 DEVELOP A NATIONAL DEINSTITUTIONALIZATION STRATEGY AND ACTION PLAN (CEG3) ..... 16 3.1.4 ESTABLISH THE LEGAL FRAMEWORK FOR COMMUNITY-BASED SERVICES (CEG4) ............................ 17 3.2 STRUCTURE AND TYPES OF PROGRAMMES AND SERVICES (PILLAR 2).............................. 19 3.2.1 DEVELOP A RANGE OF SERVICES IN THE COMMUNITY (CEG5) .................................................................... 19 3.2.2 ALLOCATE FINANCIAL, MATERIAL, AND HUMAN RESOURCES (CEG6) .................................................... 20 ii Study on Deinstitutionalization of Children and Adults with Disabilities in Europe and Eurasia 3.2.3 DEVELOP INDIVIDUAL PLANS (CEG7) ........................................................................................................................ 22 3.3 DEVELOPING HUMAN CAPACITY (PILLAR 3) ................................................................................. 22 3.3.1 DEVELOP THE WORKFORCE (CEG10)........................................................................................................................ 22 3.4 PERFORMANCE OUTCOMES AND MEASURES (PILLAR 4) ....................................................... 23 3.4.1 DEVELOP, MONITOR, AND EVALUATE THE QUALITY OF SERVICES (CEG9) ........................................... 23 3.5 INCREASING AWARENESS AND PARTICIPATION (PILLAR 5) .................................................. 24 3.5.1 INCREASE AWARENESS AND PARTICIPATION (CEG8) ...................................................................................... 24 3.6 CONCLUSION: GOOD PRACTICES EMPOWER THE SHIFT FROM THEORY TO PRACTICE ............................................................................................................................................................. 25 4. THE STATUS OF PROGRESS AND CHALLENGES IN THE TRANSITION TO COMMUNITY LIVING ............................................................................................................... 26 4.1 LEGAL AND POLICY FRAMEWORK (PILLAR 1) .............................................................................. 26 4.1.1 MAKING THE CASE FOR DEVELOPING COMMUNITY-BASED ALTERNATIVES TO INSTITUTIONS 26 4.1.2 ASSESSING THE CURRENT SITUATION OF PEOPLE WITH DISABILITIES ................................................... 27 4.1.3 DEVELOPING A STRATEGY AND AN ACTION PLAN......................................................................................... 27 4.1.4 ESTABLISHING THE LEGAL FRAMEWORK FOR COMMUNITY-BASED SERVICES ................................... 29 4.2 STRUCTURE AND TYPES OF PROGRAMMES AND SERVICES (PILLAR 2).............................. 31 4.2.1 DEVELOPING A RANGE OF SERVICES IN THE COMMUNITY ........................................................................... 31 4.2.2 ALLOCATING FINANCIAL, MATERIAL AND HUMAN RESOURCES ............................................................... 34 4.2.3 DEVELOPING HUMAN CAPACITY (PILLAR 3) ............................................................................ 35 4.2.4 PERFORMANCE OUTCOMES AND MEASURES (PILLAR 4) ...................................................... 36 4.2.5 INCREASING AWARENESS AND PARTICIPATION (PILLAR 5) .............................................. 36 4.3 THE ROLE OF DONORS IN THE TRANSITION TO COMMUNITY LIVING .......................... 36 4.4 CONCLUSION ............................................................................................................................................. 38 5. CONCLUSIONS AND RECOMMENDATIONS ................................................................. 39 REFERENCES .............................................................................................................................
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