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 PhDDisability Research ProfessorSchool of Occupational Therapy & Social WorkCurtin Universitye.cocks@curtin.edu.au

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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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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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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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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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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.

OUTCOMES3. A DESCRIPTIVE FRAMEWORK FOR ISL.4. Development of indicators & evidence for the framework.5. Two pilot studies to further develop the ISL measure.6. Finally – 8 THEMES consisting of 21 ATTRIBUTES.

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The ISL measure – Themes & Attributes

1. LEADERSHIP1.1 Clear vision & strong ideas1.2 Key people

2. MY HOME2.1 Security of tenure2.2 Doing things at home2.3 Reflection of the person´s identity

3. ONE PERSON AT A TIME3.1 Developed around the person3.2 No grouping of disability

4. PLANNING4.1 Focused on the person4.2 Involving people who are close4.3 Focus on the future

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The ISL measure – Themes & Attributes

5. CONTROL5.1 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. SUPPORT6.1 Flexible & responsive.6.2 Variety of supports including INFORMAL.

7. THRIVING7.1 Better lifestyle & wellbeing.7.2 Many opportunities for development.

8. SOCIAL INCLUSION8.1 Close & lasting relationships.8.2 Rich social network.8.3 Participating in the community.

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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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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 years19% 11-20 years 4% 21+ years

4. Level of support needs:High 24% Moderate 40% Low 37%.

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Some Initial Findings

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%

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Some Key Elements in ISL

1. SupportsFormal (paid)/Informal (unpaid)Live-in/visitingMicroboardsCircles of support2. Management Individual management Family management Shared agency management

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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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References1. 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.