1. Rights of people with a disability to control their lives Carmel Laragy PhD La Trobe University Bundoora, VIC, 3086 c.laragy@latrobe.edu.au VCOSS Congress 1 – 2 Aug. 2007

2. 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?

3. 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. ”

4. 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

5. 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

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

8. Overview of findings  Not for everyone  Welcomed warmly by many  Participation & control can increase  Adequate resources essential  Information & support essential

9. 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%

10. Analysis framework - participation 1.Education and training 2.Employment or job seeking 3.Community life 4.Family life 5.Socialising 6.Shopping 7.Living with dignity 8.Leisure/cultural activities 9.Sports or physical recreation 10.Religion (Donovan & Doyle, 2006, based on WHO International Classification of Functioning, Disability and Health (ICF) 2001 11.Housing (added)

13. 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

14. 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 life Mother 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)

15. 5.Socialising “ People use assistants to get to the pub & undertake community courses (UK government case worker/administrator) 6.Shopping 19-year-old female with intellectual disability has assistant same age and shop for clothes (Manager, centre independent living UK.)

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

17. 9.Sports or physical recreation I observed young man, intellectual disability, attend gym and be warmly welcomed with non-verbal gestures. 10.Religion Topic not explored. One service provider was minister of religion – but he was cautious about direct payments.

18. 10.Housing Woman 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)

19. “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