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EB

EB

ONLINE

[Praha] : Karolinum, 2021

1 online zdroj (346 stran)

ISBN 978-80-246-4966-5 (online ; pdf)

ISBN 978-80-246-4953-5 (print)

Sociální služby pro občany se zdravotním postižením prošly v průběhu času, zejména v posledních dvou desetiletích, podstatnými proměnami. Tato kniha se věnuje některým z těchto trendů, a to především v souvislosti s vazbou mezi životní situací a podporou dostupnou v různých zemích. Zabývá se faktory, které k těmto změnám přispěly. Nedostatek dostupného a vhodného bydlení je sice pro život v běžném prostředí překážkou, ale pro mnoho lidí se zdravotním postižením je to pouze jedna z mnoha částí pomyslné skládačky. Tato kniha se věnuje i dalším aspektům toho, co je zapotřebí k uskutečnění faktické pozitivní změny v životě lidí se zdravotním postižením..

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Section 1: The development of community living: Trajectories and turning points 15 // 1.1 Introduction to the book and to the development of community living (Jan Šiška and Julie Beadle-Brown) 17 // Overview of the book and its aims 17 // A note on terminology 19 // Documenting trajectories and turning points towards community living 20 // Quality 22 // Making system change 24 // Introduction to Section 1: The current situation for people with disabilities 24 // What do we know in terms of the current situation of people with disabilities and the implementation of the UN Convention? 26 // Outline of this section 28 // References 30 // 1.2 Deinstitutionalisation and community living: The past, the present and the future (Julie Beadle-Brown, Milan Šveřepa, Jan Šiška with contributions from the late Jim Mansell) 33 // Interview with Jim Mansell 34 // Interview with Milan Šveřepa 38 // 1.3 25 years after deinstitutionalisation - current status of community living in Norway (Jan Tossebro) 47 // Introduction 47 // Background 48 // Arguments - the critique of institutional care 48 // The second phase of deinstitutionalisation - full dissolution 50 // Experiences during the reform years 52 // Much improved housing conditions/living arrangements 53 // Family: From opposition to support 53 // More self-determination in everyday matters 54 // The revolution that "disappeared" 54 // Beyond the reform years 54 // Understanding the long-term outcomes 56 // Concluding remarks 60 // References 60 // 1.4 The current situation regarding personal assistance and independent living in Sweden (Johanna Gustafsson) 63 // Introduction 63 // Personal assistance and assistance allowance 64 // Self-determination - an important principle 65 // Financing and the cost of personal assistance 66 // Personal assistance workers 67 // Use of personal assistance and assistance allowance 68 //

Hours of assistance 69 // The meaning of personal assistance 70 // References 72 // 1.5 Ireland’s journey to a person-centred approach to disability support services (Christine Linehan) 77 // Introduction 77 // Historical context 78 // Developments in Irish disability legislation 79 // Developments in Irish disability policy 81 // Developing standards 86 // Implementation and monitoring 88 // Conclusion 90 // References 90 // 1.6 From hospitalisation to (de-?) institutionalisation: The challenges of implementing Art. 19 in Austria (Gertraud Kremsner) 95 // A (very) brief history of institutionalisation 95 // The current status quo: Challenges in implementing Article 19 of the UN-CRPD 98 // Conclusion (and limitations) 99 // References 100 // 1.7 Independent living and community inclusion in Brazil (Flavia H. Santos, Luciana M. Fonseca, Eder R. Silva) 103 // Contextualizing disabilities in Brazil 103 // Ratification of the Convention on the Rights of Persons with Disabilities in Brazil 105 // The importance of self-advocacy 108 // Policies on deinstitutionalization 111 // Inclusion in the education system 113 // Inclusion in the workforce 115 // Final considerations 116 // Conclusion 117 // Acknowledgements 118 // References 118 // 1.8 Towards community-based disability support services // in Czechia: Nearly there? (Jan Šiška and Pavel Čáslava) 123 // Introduction 123 // Quality of social services and direct payments 127 // Deinstitutionalisation 129 // Summary 131 // References 132 // Section 2: Defining, measuring and ensuring high quality services 135 2.1 Definitions of quality and the importance of measuring // and focusing on service quality (Jan Šiška and Julie Beadle-Brown) 137 // Introduction to defining, delivering and measuring high quality of life 138 // Structural and process factors 141 // References 145 //

2.2 Ensuring quality - the living conditions approach in Scandinavia (Jan Tossebro) 149 // Introduction 149 // Why was a living conditions approach chosen? 150 // What about the alternatives? 151 // On the living conditions approach 153 // Adaptation to the life circumstances of intellectually disabled people 155 // Current status 156 // References 157 // 2.3 Active Citizenship as a measure of outcomes and the quality of social services (Šárka Káňová, Jan Šiška and Julie Beadle Brown) 159 // Introduction 159 // Citizenship and disability 162 // Researching active citizenship through community living and participation 164 // Living situation 166 // Choice over living situation 166 // Support for living in the community 167 // Participating in the community - social relationships and social inclusion 168 // Conclusion 169 // References 170 // 2.4 Ensuring quality in practice - person-centred approaches (Jill Bradshaw) 173 // Introduction 173 // Person-centred approaches 174 // What does person-centred mean? 174 // What are the different elements of a person-centred system? 175 // Person-centred planning 175 // What do we know about the impact of person-centred planning on outcomes? 176 // Person-centred action 176 // Person-centred active support 178 // Why is active support important? 178 // What does person-centred active support look like? 179 // Is active support useful outside of settings supporting people // with intellectual disability? 180 // Is person-centred active support effective? 181 // Positive behaviour support 182 // Why is positive behaviour support important? 182 // What does positive behaviour support look like? 183 // Is PBS useful outside an intellectual disability setting? 184 // Is PBS effective? 184 // The SPELL Framework 184 // Why is the SPELL Framework important? 185 // What does the SPELL Framework look like? 185 //

Is SPELL Framework useful for people other than those who are autistic? 187 // Is the SPELL Framework effective? 188 // Support for communication 188 // Why is support for communication important? 188 // What does good support for communication look like? 189 // Is support for communication relevant to those who do not have // intellectual or developmental disabilities? 190 // Is good support for communication effective? 190 // Conclusions and implications 190 // References 191 // 2.5 Promoting independence and safety with medication technology for people with disabilities (Aloina Gallagher, Seunghee Lee, James Houseworth, and Betul Cakir-Dilek) 197 // Introduction 197 // Issues in Medication Management 198 // Use of Technology to Support Medication Adherence 199 // Case Study 200 // Dose Health 202 // Conclusion 203 // References 203 // 2.6 Personal assistance as a support for the quality of life of people // with disabilities (Magdalena Hanková, Soňa Kalenda and Julie Beadle-Brown) 205 Introduction 205 // Personal assistance in the Czech Republic 206 // Participants and data collection methods 208 // Findings of the study 208 // Conclusion 214 // References 216 // Section 3: Making change at the systems level - what is needed for successful implementation of the UN-CRPD 221 // 3.1 Section 3 Overview: Introduction to system wide change (Julie Beadle-Brown and Jan Šiška) 223 // References 233 // 3.2 Balancing the rights of respect for autonomy and protection from harm: Lessons from the Mental Capacity Act 2005 (England and Wales) (Camilla Parker) 239 // Mental Capacity Act 2005: Overview 241 // Recognition of the right to decide: Challenging assumptions 243 // Supporting the person’s decision-making 244 // Respecting the person’s views 246 // Conclusion 248 // References 248 // Cases 249 //

3.3 Definitions of and barriers to high-quality services and support, particularly in the context of independent living in Sweden (Johanna Gustafsson) 251 // Introduction 251 // Quality in personal assistance 252 // Performing personal assistance 254 // Assignments for personal assistants 257 // Good living conditions - an outcome of personal assistance 258 // Accessibility, a holistic viewpoint and continuity of personal assistance 259 // Influence, participation and self-determination in personal assistance 260 // Are the intentions of personal assistance fulfilled today? 264 // References 265 // 3.4 Exploring the intellectual disability data landscape for policy and service directions: An Irish perspective (Mary-Ann O’Donovan, Sarah Craig, Philip McCallion, Mary McCarron and Elaine Byrne) 269 // Introduction 269 // Definitions and demarcation Case study: Ireland Disaggregating data 274 // Q1. Is the broad category of intellectual, interpersonal and learning // disability a good predictor of service use and need? 274 // Demographic profile 275 // Health profile 276 // Help with everyday activities and activities of daily living 276 // Use and need for services 277 // Considering co-morbidity in data 279 // Q2: does having multiple disabilities result in differing service use and need? 280 // Q3: does survey and administrative serve to contradict or complement // the evidence base for service providers? 280 // NIDD 2006 compared with NIDD registrations as per NDS 2006 280 // Health service access 283 // Discussion 285 // Conclusion 287 // References 288 // 3.5 Measuring outcomes of people with disabilities in the US: Current challenges and opportunities (Renáta Tichá, and Brian Abery) 291 // Introduction 291 // Long-Term Services and Supports (LTSS) // and Home and Community Based Services (HCBS) 292 // National Quality Forum (NQF) measurement framework 294 //

Purposes of outcome measurement 295 // Compliance with HCBS policies and quality improvement 297 // Quality of service delivery 298 // Measuring outcomes of people with disabilities 299 // Importance of person-centered measurement 300 // Improving measurement quality: The Research and Training Center on HCBS // Outcome Measurement 302 // Challenges of HCBS outcome measurement 305 // State and Federal Level: Compliance and Quality Improvement 305 // Provider agency/managed care organization level: Quality of service delivery 306 // Individual level: Personal outcomes 307 // Future directions: opportunities to improve HCBS outcome measurement 307 // State and federal level: Compliance and quality improvement 307 // Provider agency/managed care organization level: Quality of service delivery 308 // Individual level: Personal outcomes 309 // Conclusion 309 // References 310 // 3.6 The role of local planning in the implementation of the UNCPRD (Johannes Schädler and Lars Wissenbach) 313 // Introduction 313 // Implementation of the UN-CRPD and local public planning 315 // Local planning and local path dependencies 318 // Local planning as a cross-level and cross sectoral approach 319 // Local planning as intervention and collective learning processes 321 // Local planning as a “looping” approach 323 // Conclusion 326 // References 327 // Index 329 // Authors’ biographies 331