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Table of Contents
Cover
Table of Contents
Section 1: The development of community living: Trajectories and turning points
1.1 Introduction to the book and to the development of community living (Jan Šiška and Julie Beadle-Brown)
Overview of the book and its aims
A note on terminology
Documenting trajectories and turning points towards community living
Quality
Making system change
Introduction to Section 1: The current situation for people with disabilities
What do we know in terms of the current situation of people with disabilities and the implementation of the UN Convention?
Outline of this section
References
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)
Interview with Jim Mansell
Interview with Milan Šveřepa
1.3 25 years after deinstitutionalisation - current status of community living in Norway (Jan Tøssebro)
Introduction
Background
Arguments - the critique of institutional care
The second phase of deinstitutionalisation - full dissolution
Experiences during the reform years
Much improved housing conditions/living arrangements
Family: from opposition to support
More self-determination in everyday matters
The revolution that "disappeared"
Beyond the reform years
Understanding the long-term outcomes
Concluding remarks
References
1.4 The current situation regarding personal assistance and independent living in Sweden (Johanna Gustafsson)
Introduction
Personal assistance and assistance allowance
Self-determination - an important principle
Financing and the cost of personal assistance
Personal assistance workers
Use of personal assistance and assistance allowance
Hours of assistance
The meaning of personal assistance.
References
1.5 Ireland's journey to a person-centred approach to disability support services (Christine Linehan)
Introduction
Historical context
Developments in Irish disability legislation
Developments in Irish disability policy
Developing standards
Implementation and monitoring
Conclusion
References
1.6 From hospitalisation to (de-?) institutionalisation: The challenges of implementing Art. 19 in Austria (Gertraud Kremsner)
A (very) brief history of institutionalisation
The current status quo: Challenges in implementing Article 19 of the UN-CRPD
Conclusion (and limitations)
References
1.7 Independent living and community inclusion in Brazil (Flavia H. Santos, Luciana M. Fonseca, Eder R. Silva)
Contextualizing disabilities in Brazil
Ratification of the Convention on the Rights of Persons with Disabilities in Brazil
The importance of self-advocacy
Policies on deinstitutionalization
Inclusion in the education system
Inclusion in the workforce
Final considerations
Conclusion
Acknowledgements
References
1.8 Towards community-based disability support services in Czechia: nearly there? (Jan Šiška and Pavel Čáslava)
Introduction
Quality of social services and direct payments
Deinstitutionalisation
Summary
References
Section 2: Defining, measuring and ensuring high quality services
2.1 Definitions of quality and the importance of measuring and focusing on service quality (Jan Šiška and Julie Beadle-Brown)
Introduction to defining, delivering and measuring high quality of life
Structural and process factors
References
2.2 Ensuring quality - the living conditions approach in Scandinavia (Jan Tøssebro)
Introduction
Why was a living conditions approach chosen?
What about the alternatives?
On the living conditions approach.
Adaptation to the life circumstances of intellectually disabled people
Current status
References
2.3 Active Citizenship as a measure of outcomes and the quality of social services (Šárka Káňová, Jan Šiška and Julie Beadle Brown)
Introduction
Citizenship and disability
Researching active citizenship through community living and participation
Living situation
Choice over living situation
Support for living in the community
Participating in the community - social relationships and social inclusion
Conclusion
References
2.4 Ensuring quality in practice - person-centred approaches (Jill Bradshaw)
Introduction
Person-centred approaches
What does person-centred mean?
What are the different elements of a person-centred system?
Person-centred planning
What do we know about the impact of person-centred planning on outcomes?
Person-centred action
Person-centred active support
Why is active support important?
What does person-centred active support look like?
Is active support useful outside of settings supporting people with intellectual disability?
Is person-centred active support effective?
Positive behaviour support
Why is positive behaviour support important?
What does positive behaviour support look like?
Is PBS useful outside an intellectual disability setting?
Is PBS effective?
The SPELL Framework
Why is the SPELL Framework important?
What does the SPELL Framework look like?
Is SPELL Framework useful for people other than those who are autistic?
Is the SPELL Framework effective?
Support for communication
Why is support for communication important?
What does good support for communication look like?
Is support for communication relevant to those who do not have intellectual or developmental disabilities?.
Is good support for communication effective?
Conclusions and implications
References
2.5 Promoting independence and safety with medication technology for people with disabilities (Alaina Gallagher, Seunghee Lee, James Houseworth, and Betul Cakir-Dilek)
Introduction
Issues in medication management
Use of technology to support medication adherence
Case study
Dose Health
Conclusion
References
2.6 Personal assistance as a support for the quality of life of people with disabilities (Magdalena Hanková, Soňa Kalenda and Julie Beadle-Brown)
Introduction
Personal assistance in the Czech Republic
Participants and data collection methods
Findings of the study
Conclusion
References
Section 3: Making change at the systems level - what is needed for succesful implementation of the UN-CRPD
3.1 Section 3 Overview: Introduction to system wide change (Julie Beadle-Brown and Jan Šiška)
References
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)
Mental Capacity Act 2005: Overview
Recognition of the right to decide: Challenging assumptions
Supporting the person's decision-making
Respecting the person's views
Conclusion
References
Cases
3.3 Definitions of and barriers to high-quality services and support, particularly in the context of independent living in Sweden (Johanna Gustafsson)
Introduction
Quality in personal assistance
Performing personal assistance
Assignments for personal assistants
Good living conditions - an outcome of personal assistance
Accessibility, a holistic viewpoint and continuity of personal assistance
Influence, participation and self-determination in personal assistance
Are the intentions of personal assistance fulfilled today?.
References
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)
Introduction
Definitions and demarcation
Case study: Ireland
Disaggregating data
Q1. Is the broad category of intellectual, interpersonal and learning disability a good predictor of service use and need?
Demographic profile
Health profile
Help with everyday activities and activities of daily living
Use and need for services
Considering co-morbidity in data
Q2: does having multiple disabilities result in differing service use and need?
Q3: does survey and administrative serve to contradict or complement the evidence base for service providers?
NIDD 2006 compared with NIDD registrations as per NDS 2006
Health service access
Discussion
Conclusion
References
3.5 Measuring outcomes of people with disabilities in the US: Current challenges and opportunities (Renáta Tichá, and Brian Abery)
Introduction
Long-Term Services and Supports (LTSS) and Home and Community Based Services (HCBS)
National Quality Forum (NQF) measurement framework
Purposes of outcome measurement
Compliance with HCBS policies and quality improvement
Quality of service delivery
Measuring outcomes of people with disabilities
Importance of person-centered measurement
Improving measurement quality: The Research and Training Center on HCBS Outcome Measurement
Challenges of HCBS outcome measurement
State and Federal Level: Compliance and Quality Improvement
Provider agency/managed care organization level: Quality of service delivery
Individual level: Personal outcomes
Future directions: Opportunities to improve HCBS outcome measurement.
State and federal level: Compliance and quality improvement.
Table of Contents
Section 1: The development of community living: Trajectories and turning points
1.1 Introduction to the book and to the development of community living (Jan Šiška and Julie Beadle-Brown)
Overview of the book and its aims
A note on terminology
Documenting trajectories and turning points towards community living
Quality
Making system change
Introduction to Section 1: The current situation for people with disabilities
What do we know in terms of the current situation of people with disabilities and the implementation of the UN Convention?
Outline of this section
References
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)
Interview with Jim Mansell
Interview with Milan Šveřepa
1.3 25 years after deinstitutionalisation - current status of community living in Norway (Jan Tøssebro)
Introduction
Background
Arguments - the critique of institutional care
The second phase of deinstitutionalisation - full dissolution
Experiences during the reform years
Much improved housing conditions/living arrangements
Family: from opposition to support
More self-determination in everyday matters
The revolution that "disappeared"
Beyond the reform years
Understanding the long-term outcomes
Concluding remarks
References
1.4 The current situation regarding personal assistance and independent living in Sweden (Johanna Gustafsson)
Introduction
Personal assistance and assistance allowance
Self-determination - an important principle
Financing and the cost of personal assistance
Personal assistance workers
Use of personal assistance and assistance allowance
Hours of assistance
The meaning of personal assistance.
References
1.5 Ireland's journey to a person-centred approach to disability support services (Christine Linehan)
Introduction
Historical context
Developments in Irish disability legislation
Developments in Irish disability policy
Developing standards
Implementation and monitoring
Conclusion
References
1.6 From hospitalisation to (de-?) institutionalisation: The challenges of implementing Art. 19 in Austria (Gertraud Kremsner)
A (very) brief history of institutionalisation
The current status quo: Challenges in implementing Article 19 of the UN-CRPD
Conclusion (and limitations)
References
1.7 Independent living and community inclusion in Brazil (Flavia H. Santos, Luciana M. Fonseca, Eder R. Silva)
Contextualizing disabilities in Brazil
Ratification of the Convention on the Rights of Persons with Disabilities in Brazil
The importance of self-advocacy
Policies on deinstitutionalization
Inclusion in the education system
Inclusion in the workforce
Final considerations
Conclusion
Acknowledgements
References
1.8 Towards community-based disability support services in Czechia: nearly there? (Jan Šiška and Pavel Čáslava)
Introduction
Quality of social services and direct payments
Deinstitutionalisation
Summary
References
Section 2: Defining, measuring and ensuring high quality services
2.1 Definitions of quality and the importance of measuring and focusing on service quality (Jan Šiška and Julie Beadle-Brown)
Introduction to defining, delivering and measuring high quality of life
Structural and process factors
References
2.2 Ensuring quality - the living conditions approach in Scandinavia (Jan Tøssebro)
Introduction
Why was a living conditions approach chosen?
What about the alternatives?
On the living conditions approach.
Adaptation to the life circumstances of intellectually disabled people
Current status
References
2.3 Active Citizenship as a measure of outcomes and the quality of social services (Šárka Káňová, Jan Šiška and Julie Beadle Brown)
Introduction
Citizenship and disability
Researching active citizenship through community living and participation
Living situation
Choice over living situation
Support for living in the community
Participating in the community - social relationships and social inclusion
Conclusion
References
2.4 Ensuring quality in practice - person-centred approaches (Jill Bradshaw)
Introduction
Person-centred approaches
What does person-centred mean?
What are the different elements of a person-centred system?
Person-centred planning
What do we know about the impact of person-centred planning on outcomes?
Person-centred action
Person-centred active support
Why is active support important?
What does person-centred active support look like?
Is active support useful outside of settings supporting people with intellectual disability?
Is person-centred active support effective?
Positive behaviour support
Why is positive behaviour support important?
What does positive behaviour support look like?
Is PBS useful outside an intellectual disability setting?
Is PBS effective?
The SPELL Framework
Why is the SPELL Framework important?
What does the SPELL Framework look like?
Is SPELL Framework useful for people other than those who are autistic?
Is the SPELL Framework effective?
Support for communication
Why is support for communication important?
What does good support for communication look like?
Is support for communication relevant to those who do not have intellectual or developmental disabilities?.
Is good support for communication effective?
Conclusions and implications
References
2.5 Promoting independence and safety with medication technology for people with disabilities (Alaina Gallagher, Seunghee Lee, James Houseworth, and Betul Cakir-Dilek)
Introduction
Issues in medication management
Use of technology to support medication adherence
Case study
Dose Health
Conclusion
References
2.6 Personal assistance as a support for the quality of life of people with disabilities (Magdalena Hanková, Soňa Kalenda and Julie Beadle-Brown)
Introduction
Personal assistance in the Czech Republic
Participants and data collection methods
Findings of the study
Conclusion
References
Section 3: Making change at the systems level - what is needed for succesful implementation of the UN-CRPD
3.1 Section 3 Overview: Introduction to system wide change (Julie Beadle-Brown and Jan Šiška)
References
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)
Mental Capacity Act 2005: Overview
Recognition of the right to decide: Challenging assumptions
Supporting the person's decision-making
Respecting the person's views
Conclusion
References
Cases
3.3 Definitions of and barriers to high-quality services and support, particularly in the context of independent living in Sweden (Johanna Gustafsson)
Introduction
Quality in personal assistance
Performing personal assistance
Assignments for personal assistants
Good living conditions - an outcome of personal assistance
Accessibility, a holistic viewpoint and continuity of personal assistance
Influence, participation and self-determination in personal assistance
Are the intentions of personal assistance fulfilled today?.
References
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)
Introduction
Definitions and demarcation
Case study: Ireland
Disaggregating data
Q1. Is the broad category of intellectual, interpersonal and learning disability a good predictor of service use and need?
Demographic profile
Health profile
Help with everyday activities and activities of daily living
Use and need for services
Considering co-morbidity in data
Q2: does having multiple disabilities result in differing service use and need?
Q3: does survey and administrative serve to contradict or complement the evidence base for service providers?
NIDD 2006 compared with NIDD registrations as per NDS 2006
Health service access
Discussion
Conclusion
References
3.5 Measuring outcomes of people with disabilities in the US: Current challenges and opportunities (Renáta Tichá, and Brian Abery)
Introduction
Long-Term Services and Supports (LTSS) and Home and Community Based Services (HCBS)
National Quality Forum (NQF) measurement framework
Purposes of outcome measurement
Compliance with HCBS policies and quality improvement
Quality of service delivery
Measuring outcomes of people with disabilities
Importance of person-centered measurement
Improving measurement quality: The Research and Training Center on HCBS Outcome Measurement
Challenges of HCBS outcome measurement
State and Federal Level: Compliance and Quality Improvement
Provider agency/managed care organization level: Quality of service delivery
Individual level: Personal outcomes
Future directions: Opportunities to improve HCBS outcome measurement.
State and federal level: Compliance and quality improvement.