new ways to understand personal assistance: lessons from sweden ciara brennan university of iceland
TRANSCRIPT
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NEW WAYS TO UNDERSTAND PERSONAL ASSISTANCE: LESSONS
FROM SWEDEN
Ciara Brennan
University of Iceland
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Independent Living
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WHAT IS INDEPENDENT LIVING?
California in the 1960s
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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
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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
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WHAT IS PERSONAL ASSISTANCE?
Everyday life:
•Getting up in the morning•Cooking •Going to school or work•Living at home•Friends•Travel
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https://www.youtube.com/watch?v=hOeGDUlqy_g
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PERSONAL ASSISTANCE IN EUROPE
• Europeans studied at the University of California
• They learned about personal assistance
• Independent living came to Europe in the 1980s
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THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH
DISABILITIES
•147 countries have agreed •The European Union agreed
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ARTICLE 19: THE RIGHT TO LIVE INDEPENDENTLY IN THE
COMMUNITY
• Community living• Personal assistance• Choice• Independence
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NOT MUCH HAS CHANGED SINCE THE 1960s
12
California 1970s Ireland 2012
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NOT MUCH HAS CHANGED SINCE THE 1960s
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NOT MUCH HAS CHANGED SINCE THE 1960s
• Choice• Control • Independence• Deinstitutionalisation• Community living
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BUT SOME THINGS HAVE CHANGED
• More people have personal assistance
• More people need support to manage personal assistance
– Children– People with learning disabilities
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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
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WHY SWEDEN?
• The best for independent
living in Europe?
• A law for personal assistance in 1994
• 16, 000 people have personal assistance
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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
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WHAT WE FOUND
•Health and safety were very important
•People wanted their personal assistants to have training and education
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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
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WHAT WE FOUND
The government and local government used choice, control and independence to argue that some people should not have personal assistance
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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
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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
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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
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QUESTIONS?