1. NEW WAYS TO UNDERSTAND PERSONAL ASSISTANCE: LESSONS FROM SWEDEN Ciara Brennan University of Iceland

2. Independent Living

3. WHAT IS INDEPENDENT LIVING? California in the 1960s

4. PEOPLE IN CALIFORNIA WANTED… The same rights as other Americans Choice of where to live Control over their life Money to buy services PERSONAL ASSISTANCE

5. WHAT IS PERSONAL ASSISTANCE? A pathway to independent living People get money to pay for the assistance they want People can choose who works for them

6. WHAT IS PERSONAL ASSISTANCE? Everyday life: Getting up in the morning Cooking Going to school or work Living at home Friends Travel

7. https://www.youtube.com/watch?v=hO eGDUlqy_g

8. PERSONAL ASSISTANCE IN EUROPE Europeans studied at the University of California They learned about personal assistance Independent living came to Europe in the 1980s

10. THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES 147 countries have agreed The European Union agreed

11. ARTICLE 19: THE RIGHT TO LIVE INDEPENDENTLY IN THE COMMUNITY Community living Personal assistance Choice Independence

12. NOT MUCH HAS CHANGED SINCE THE 1960s 12 California 1970s Ireland 2012

13. NOT MUCH HAS CHANGED SINCE THE 1960s

14. Choice Control Independence Deinstitutionalisation Community living

15. BUT SOME THINGS HAVE CHANGED More people have personal assistance More people need support to manage personal assistance –Children –People with learning disabilities

16. THE RESEARCH In Sweden Participants needed a lot of support with personal assistance Mothers gave the most support Interviews I worked for an independent living organisation

17. WHY SWEDEN? The best for independent living in Europe? A law for personal assistance in 1994 16, 000 people have personal assistance

18. WHAT WE FOUND Choice, control and independence were important… But other things were just as important or more important: Freedom A good life A normal life

19. WHAT WE FOUND Health and safety were very important People wanted their personal assistants to have training and education

20. WHAT WE FOUND People needed personal assistance 24/7 It took a lot of work to arrange personal assistance People had a lot of support

21. WHAT WE FOUND The government and local government used choice, control and independence to argue that some people should not have personal assistance

22. WHAT WE FOUND Some people felt excluded from independent living because they need a lot of support Some people wanted a separate independent living organisation

23. OTHER WAYS TO UNDERSTAND PERSONAL ASSISTANCE Everybody we spoke to had different experiences Some people need a lot of support Lots of responsibility comes with having personal assistance

24. OTHER WAYS TO UNDERSTAND PERSONAL ASSISTANCE What has been written is a lot different to people’s lived experiences We listened to people’s stories instead People’s stories were more complicated

25. QUESTIONS?