A191 Individual Supported Living Project exploring choice and control over where you live and with whom

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. 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.”
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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
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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.
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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”.
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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.
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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
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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.
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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
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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%.
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11. Some Initial Findings
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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. 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
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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.
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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.
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