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Individual Supported Living Project
(ISL): Exploring choice & control over
where you live & with whom
Rehabilitation Inter...
KEY VALUES: UN Convention on the Rights of
Persons with Disabilities – Article 19
“...full inclusion and participation in ...
Supported Living for People with Disabilities –
2014-15 (AIHW, 2016)
42,580 Australians with disabilities received funded ...
Challenging the dominant paradigm (UNCRPD)
Key assumptions/beliefs that underpin Individual Supported
Living (ISL)
1. All ...
The ISL Project 2007 onwards – A KEY ACTION
STRATEGY
 A person with disability is provided with the support
necessary to ...
ISL Project Overview
AIM Establish an evidence base for the quality of ISL arrangements
through training & evaluation.
STA...
The ISL measure – Themes & Attributes
1. LEADERSHIP
1.1 Clear vision & strong ideas
1.2 Key people
2. MY HOME
2.1 Security...
The ISL measure – Themes & Attributes
5. CONTROL
5.1 Control over LIFE by person & those who are close.
5.2 Self-determina...
ISL Project Stage 3 – Funded by Australian
Research Council
• Evaluate 150 ISL arrangements in WA, Victoria, & NSW using s...
Participants – approx. 130 evaluations
completed
1. 48% males & 52% females.
2. 14% 18-25 years 29% 26-35 years
52% 36-59 ...
Some Initial Findings
11
1. Strong face & content validity & inter-rater
reliability.
2. TYPES OF ARRANGEMENT (with variat...
Some Key Elements in ISL
1. Supports
Formal (paid)/Informal (unpaid)
Live-in/visiting
Microboards
Circles of support
2...
Some Key Elements in ISL
1. Crucial role of individualised funding.
2. Importance of security of tenure:
Ownership, Shared...
References
1. Cocks, E, & Boaden, R. (2011). A quality framework for
personalised residential supports for adults with
dev...
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RIWC_PARA_A191 Individual Supported Living Project exploring choice and control over where you live and with whom

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RIWC_PARA_A191 Individual Supported Living Project exploring choice and control over where you live and with whom

  1. 1. Individual Supported Living Project (ISL): Exploring choice & control over where you live & with whom Rehabilitation International World Congress Edinburgh, 25-27 Oct 2016 Professor Errol Cocks BA MPsych PhD Disability Research Professor School of Occupational Therapy & Social Work Curtin University e.cocks@curtin.edu.au
  2. 2. KEY VALUES: UN Convention on the Rights of Persons with Disabilities – Article 19 “...full inclusion and participation in the community...” “(a) Persons with disabilities have the opportunities to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.” “(b) Persons with disabilities have access to a range of in-home residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” 2
  3. 3. Supported Living for People with Disabilities – 2014-15 (AIHW, 2016) 42,580 Australians with disabilities received funded accommodation support - average per capita funding over $90k in over 6,000 “outlets”. Well over 50% have intellectual/learning/developmental disability. 18,457 live with “in home” support. Congregation of people with disabilities remains by far the predominant means of providing living settings, especially in settings owned & managed by governments & NGOs:  16,751 resident in group homes  2,800 resident in institutions 3
  4. 4. Challenging the dominant paradigm (UNCRPD) Key assumptions/beliefs that underpin Individual Supported Living (ISL) 1. All people with the right individualised supports can live in an ISL arrangement. 2. People in an ISL arrangement do not have to live alone or independently. 3. People with disability do not have to live together. 4
  5. 5. The ISL Project 2007 onwards – A KEY ACTION STRATEGY  A person with disability is provided with the support necessary to live in their own home of their choice.  A support arrangement is provided “one person at a time”.  Understanding the meaning of “my home – a good home”.  Understanding what we mean by “a good life”. 5
  6. 6. ISL Project Overview AIM Establish an evidence base for the quality of ISL arrangements through training & evaluation. STAGES 1 & 2: 2007-2013 1. 3 literature reviews – formal versus informal literature differences. 2. Development of a FIDELITY MEASURE: a. Followed 6 ISL arrangements over 18 months. b. Delphi survey & focus groups with key stakeholders. OUTCOMES 1. A DESCRIPTIVE FRAMEWORK FOR ISL. 2. Development of indicators & evidence for the framework. 3. Two pilot studies to further develop the ISL measure. 4. Finally – 8 THEMES consisting of 21 ATTRIBUTES. 6
  7. 7. The ISL measure – Themes & Attributes 1. LEADERSHIP 1.1 Clear vision & strong ideas 1.2 Key people 2. MY HOME 2.1 Security of tenure 2.2 Doing things at home 2.3 Reflection of the person´s identity 3. ONE PERSON AT A TIME 3.1 Developed around the person 3.2 No grouping of disability 4. PLANNING 4.1 Focused on the person 4.2 Involving people who are close 4.3 Focus on the future 7
  8. 8. The ISL measure – Themes & Attributes 5. CONTROL 5.1 Control over LIFE by person & those who are close. 5.2 Self-determination is central. 5.3 Control over ARRANGEMENT by person & those who are close. 6. SUPPORT 6.1 Flexible & responsive. 6.2 Variety of supports including INFORMAL. 7. THRIVING 7.1 Better lifestyle & wellbeing. 7.2 Many opportunities for development. 8. SOCIAL INCLUSION 8.1 Close & lasting relationships. 8.2 Rich social network. 8.3 Participating in the community. 8
  9. 9. ISL Project Stage 3 – Funded by Australian Research Council • Evaluate 150 ISL arrangements in WA, Victoria, & NSW using small teams - 3 or 4 team members with training conduct an interview & other data gathering with ISL participants. • Provide training/presentations to 300 people. • Partnered with Sydney & Melbourne Universities & 17 NGOs. • INFORMATION GATHERED – ISL evaluation – Sociodemographic & socioeconomic information – Type of arrangement & housing – Housing pathways – Formal & informal support – QoL & Index of Community Involvement – Assessed level of support 9
  10. 10. Participants – approx. 130 evaluations completed 1. 48% males & 52% females. 2. 14% 18-25 years 29% 26-35 years 52% 36-59 years 5% 60 years & older. 3. Length of time in arrangements: 11% less than 12 months 66% 1-10 years 19% 11-20 years 4% 21+ years 4. Level of support needs: High 24% Moderate 40% Low 37%. 10
  11. 11. Some Initial Findings 11 1. Strong face & content validity & inter-rater reliability. 2. TYPES OF ARRANGEMENT (with variations in each)  Co-residents 14%  Relationship 10%  Shared home 5%  Host/alternate family 5%  Living alone 64%  Other 2%
  12. 12. Some Key Elements in ISL 1. Supports Formal (paid)/Informal (unpaid) Live-in/visiting Microboards Circles of support 2. Management  Individual management  Family management  Shared agency management 12
  13. 13. Some Key Elements in ISL 1. Crucial role of individualised funding. 2. Importance of security of tenure: Ownership, Shared Ownership, Private Rental, Social Housing/Housing Associations. 3. Cultural influences, e.g., indigenous families, CALD families. 13
  14. 14. References 1. Cocks, E, & Boaden, R. (2011). A quality framework for personalised residential supports for adults with developmental disabilities. Journal of Intellectual Disability Research, 55, 720-3. 2. Cocks, E., Thoresen, S., Willliamson, M. & Boaden, R. (2013). The Individual supported living manual: a planning and review instrument for individual supported living arrangements for adults with intellectual & developmental disabilities. JIDR, 58, 614-624. 3. Cocks, E., Thoresen, S., O`Brien, P., McVilly, K., Thomson, A., Gadow, F., Crosbie, J., & Prain, M. (2016). Examples of individual supported living for adults with intellectual disability. Journal of Intellectual Disabilities. DOI: 10.1177/1744629516629854, 1-9. 14

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