NEW WAYS TO UNDERSTAND PERSONAL ASSISTANCE: LESSONS

FROM SWEDEN

Ciara Brennan

University of Iceland

Independent Living

WHAT IS INDEPENDENT LIVING?

California in the 1960s

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

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

WHAT IS PERSONAL ASSISTANCE?

Everyday life:

•Getting up in the morning•Cooking •Going to school or work•Living at home•Friends•Travel

https://www.youtube.com/watch?v=hOeGDUlqy_g

PERSONAL ASSISTANCE IN EUROPE

• Europeans studied at the University of California

• They learned about personal assistance

• Independent living came to Europe in the 1980s

THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH

DISABILITIES

•147 countries have agreed •The European Union agreed

ARTICLE 19: THE RIGHT TO LIVE INDEPENDENTLY IN THE

COMMUNITY

• Community living• Personal assistance• Choice• Independence

NOT MUCH HAS CHANGED SINCE THE 1960s

12

California 1970s Ireland 2012

NOT MUCH HAS CHANGED SINCE THE 1960s

NOT MUCH HAS CHANGED SINCE THE 1960s

• Choice• Control • Independence• Deinstitutionalisation• Community living

BUT SOME THINGS HAVE CHANGED

• More people have personal assistance

• More people need support to manage personal assistance

– Children– People with learning disabilities

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

WHY SWEDEN?

• The best for independent

living in Europe?

• A law for personal assistance in 1994

• 16, 000 people have personal assistance

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

WHAT WE FOUND

•Health and safety were very important

•People wanted their personal assistants to have training and education

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

WHAT WE FOUND

The government and local government used choice, control and independence to argue that some people should not have personal assistance

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

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

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

QUESTIONS?