Rights of people with a disability to control their lives

Carmel Laragy PhDLa Trobe UniversityBundoora, VIC, 3086c.laragy@latrobe.edu.au

VCOSS Congress 1 – 2 Aug. 2007

Placebo, panacea or empowering practice? A look at disability rights

Do people really have rights to participate actively in communities?

Victorian State Disability Plan, Disability Services Act (VIC) 2006, UN Convention on the Rights of People with Disabilities 2006 etc. etc.

Enhancing lives of people with a disability or simply creating more reporting mechanisms?

Practices being improved to ensure people are empowered?

What’s working, what isn’t, what could work better, and how?

Independent living - definition Intellectual, physical & sensory disability; & aged

International

Promotes self-determination, empowerment, autonomy, choice & participation in society

Culture & history shape programs

Share principles different interpretations & implementation

Terminology “supported living, direct payments, individualized funding, consumer directed care, self-management, personal assistance etc.”

Methodology - interviews

2003; 2006-07 Melbourne UnitingCare Community Options Individualised Lifestyles Project evaluation

2005 United Kingdom

2006 Sweden

Opportunistic sampling

Semi-structured

Wide range of stakeholders

No ethics approval people with a disability unless in formal position

UnitingCare Community Options (UCCO)Individualised Lifestyles Project

Evaluated set up stage in 2003 11 families & 1 already self-managing

Evaluation follow-up 2006-07

5/11 original families telephone interview

Table of interviews

Country Area Category of interviewee Nos. total

Sweden

Jönköping & Stockholm

Cooperative 4

Personal assistant

2

Local authority (kommun) administrator

2

Social Insurance Office of central government (Försäkrinskassan)

2

Researcher & previously Local authority manager

1

County Council - Retired

1 12

UK –England Brighton, Bristol, Derbyshire Leeds, West Sussex

Centre for Independent Living

5

Government case worker/administrator

3

Senior government administrator

3

Researcher 4 15

UK – Scotland Edinburgh, Glasgow Centre for Independent Living

3

Government case worker/administrator

1

Service provider 3

Researcher 1 8

Total 35

People with a disability are in the driver’s seat, but it is an uphill battle

Overview of findings

Not for everyone Welcomed warmly by many Participation & control can

increase Adequate resources essential Information & support

essential

UCCO –Control & participation

5/5 (11) self-managing (1 outside UCCO)

4/4 (11) HIGH control

4/4 (11) HIGH new opportunities employ staff as required – clubs & activities

4/4 (11) HIGH satisfaction “I love it”

4/4 (11) LOW stresses and demands when using UCCO as employer and for administration

pay fees < 10%

Analysis framework - participation

1. Education and training2. Employment or job seeking3. Community life4. Family life5. Socialising6. Shopping7. Living with dignity8. Leisure/cultural activities9. Sports or physical recreation10. Religion

(Donovan & Doyle, 2006, based on WHO International Classification of Functioning, Disability and Health (ICF) 2001

11. Housing (added)

Participation Category

United Kingdom

Sweden

1. Education and training

Centre independent living 5 Government case worker / administrator 1

2. Employment or job seeking

Employer support service for direct payment users 2

Cooperative 2 Personal assistant 2

3. Community life Centre independent living 6 Government workers 3 Researcher 1

Cooperative 4 Government workers 2 Personal assistant 2

4. Family life Centre independent living 2 Government workers 6

Cooperative 3

5. Socialising Centre independent living 4 Government workers 3 Researcher 1 Employer support service for direct payment users 1 Service provider 2

Cooperative 4 Personal assistant 2 Government workers 1

Participation Category

United Kingdom

Sweden

6. Shopping Centre independent living 4 Employer support service for direct payment users 1 Government workers 3 Researcher 1

Cooperative 4 Personal assistant 2

7. Living with dignity

Centre independent living 5 Employer support service for direct payment users 1 Government workers 6 Researcher 1 Service provider 2

Cooperative 4 Government workers 2 Personal assistant 2

8. Leisure/cultural activities

Centre independent living 4 Employer support service for direct payment users 1 Government workers 3 Researcher 1 Service provider 2

Cooperative 4 Government workers 2 Personal assistant 2

9. Sports or physical recreation

Centre independent living 3 Government workers 1 Employer support service for direct payment users 1 Researcher 1 Service provider 1

10. Religion Government workers 1

11. Housing – private residence

Centre independent living 3 Employer support service for direct payment users 1 Government workers 1 Researcher 1 Service provider 1

Cooperative 4 Government workers 2 Personal assistant 2

1. Education and training“Most people who have a personal assistant go to work or activities 3-5 days a week” (Personal assistant, Sweden)

2. Employment or job seeking* Researcher, mental health disability, direct payments employed support worker and enabled him to work (UK) * Six interviewees employed in support services had visible physical disabilities

3. Community life“Clients are encouraged to save a few pounds a week and put towards a holiday” (Manager, centre independent living UK.)

4. Family lifeMother was paid personal assistant for son in months before he died, age 10. “This was invaluable, especially when he was in hospital and needed constant care” (Sweden)

5. Socialising“People use assistants to get to the pub & undertake community courses (UK government case worker/administrator)

6. Shopping19-year-old female with intellectual disability has assistant same age and shop for clothes (Manager, centre independent living UK.)

7. Living with dignity* Agency workers have fixed rosters - rigid bed times. Direct employment of carers gives flexibility (Sweden & UK)

* "One size does not fit all”(UK Service Provider)

8. Leisure/cultural activitiesMan, intellectual disability, hated day centre. Employed assistant – loved horse riding & creative writing course. Mother organised; accountant kept records(UK government case worker/ administrator)

9. Sports or physical recreationI observed young man, intellectual disability, attend gym and be warmly welcomed with non-verbal gestures.

10. ReligionTopic not explored. One service provider was minister of religion – but he was cautious about direct payments.

10. HousingWoman living in flat with assistants 3 p.m. - 9 a.m. “The alternative to this would be living in an institution” (Swedish cooperative administrator in wheelchair)

“What isn’t working, what could work better?” or What needs more investigation?

Resources – must be adequate Support & information - essential Working conditions of support workers

Varying interest amongst those who support independent living

e.g. some Swedish cooperatives had high focus on needs of support workers, but not others

UCCO Melbourne – high focus on needs of support workers