INSTITUTE ON INDEPENDENT LIVING NEWSLETTER 4/99
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Personal Assistance
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Dear friends and colleagues,
Anti-discrimination legislation stipulating universal design in
construction, transportation and equal opportunities in education and
employment meets only some of the needs for those of us who have
extensive disabilities and depend on personal assistance in their
everyday lives. To get on the bus, we first have to get out of bed. And
if you cannot do this by yourself, you will need help from somebody. If
we do not want to depend on relatives or volunteers, then most of us
will need money from other sources to pay for personal assistance.
Some of us claim that in a completely non-discriminatory society we
would be able to earn our living and pay for our assistive devices and
personal assistance ourselves. Maybe, if you earn a lot and labor is
cheap where you live. I don't earn $100,000 a year and I don't know that
many assistance users who do. That's about how much my 15 hours/day of
assistance costs in Sweden. $100,000 for assistance still doesn't pay
the mortgage or the groceries. Without my disability I would not make
that much money either - my interests lie elsewhere - why should it be
easier with a disability?
How should this be organized to best meet our needs? Through tax-funded
schemes, mandatory private insurance or something in between? Who
should be the employer of your assistants: the local government, a
charity, a private corporation, or you yourself? Whom do you want to
work for you: trained nurses, ex-convicts, female body builders with a
degree in rehabilitation psychology? Can we learn how to recruit better
assistants? How can you get the best quality work from your assistants?
We try to address these and many other questions in our Personal
Assistance Network, and in our constantly growing collection of
documents, legal texts, training manuals and other resources. Join our
network and share your experience and insights with other assistance
users. At http://www.independentliving.org/PANetwork
Adolf D. Ratzka, Ph.D.
Institute on Independent Living
[note: long URLs may have to be copied and pasted into your browser's
address (location) bar.]
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Personal Assistance Network
http://www.independentliving.org/PANetwork
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The Personal Assistance Network provides information, examples of good
practice, advice and support for people with extensive disabilities and
their organizations so that they can improve their posibilities to:
- live and work in society with personal assistance
- function as employers for their assistants
- support one another in these functions
- organize themselves in a user cooperative for personal assistance
- work politically for direct payments
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Independent Living Virtual Library - Personal Assistance
http://www.independentliving.org/Library/Library_Contents17.html
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Under the sub-heading "Personal Assitance" in our on-line Library,
you'll find over 80 texts on Definitions & ideology; Country profiles;
Examples of good practice; Financing issues; Legal issues; Research &
evaluation; and Training issues.
Here are just a few titles:
Attendant Care, Position Paper
A description of private and publicly funded attendant care (personal
assistance) programs in Australia, especially within the province of New
South Wales, including recommendations for the local/national
governments.
http://www.independentliving.org/LibArt/pa/australia.html
The ABCs of hiring PCAs
Personal care attendant work pays little, and much of the work is menial
- so the search for caring, competent, reliable people is arduous.
Karen Breisky relates to her own experiences in offering tips for hiring
assistants.
http://www.independentliving.org/LibArt/breisky.html
Gateshead Personal Assistance Pilot Project: a guide to self-assessment
The Guide provides information and advice to disabled people who wish to
live independently by using personal assistance. The Guide focusses on
assessing your needs.
http://www.independentliving.org/LibArt/Gateshead1.html
We publish texts about your organization, its mission and activities,
achievements, needs and plans in our full-text virtual Library. To have
something published on our site, free of charge, contact
http://www.independentliving.org/Publish.html
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State of the art in personal assistance services in your country
http://www.independentliving.org/PANetwork/questionnaire.html
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Contribute to our international survey.
The Institute, as part of its Personal Assistance Network project,
compiles examples of good practice in personal assistance from around
the world in order to further the state of the art in this area. This
questionnaire is used to describe personal assistance services in your
country, with an example from Sweden provided..
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Assistant Referral Service
http://www.independentliving.org/assex/index.html
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Many persons with extensive disabilities use employed workers for such
daily tasks as getting bathed and dressed, shopping, driving their car
or anything else which they cannot do by themselves.
Our ambition is to match assistance users and assistants in their
hometown, within their country or in other parts of the world. For
example, if you as an assistance user plan to take a trip abroad, you
might want to put in an ad offering a position in the city you will be
visiting. In this case, you might want to use English. If you need an
assistant in your hometown, use your own language. In this case it is
easier to match your request.
Assistance users can find assistants through the Personal Assistance
Exchange, while assistants can regularly check the site for job
openings.
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Discussion Forums
http://www.independentliving.org/cgi-bin/cgiwrap/indliv/forum/bbs_entrance.cgi
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Current threads under the Personal Assistance Forum are:
- Is purpose-built housing for people with disabilities
"ghetto-ization"?
- Are there any Independent Living organisations in Menorca, Spain?
- I need assistance for my mother who lives in Andover, Ohio.
Regardless of what you have on your mind, you'll find an appropriate
discussion forum that allows you direct contact with the thousands of
visitors to our site each month. Among the variety of themes such as
human rights; personal assistance; and relationships, sexuality &
family, there is also one for personal assistance.
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Books on Personal Assistance
http://barnesandnoble.bfast.com/booklink/click?sourceid=256763&is_search=Y&keyword=disability+personal+assistance&match=exact&options=and
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The Institute's Bookstore offers a selection of books directly related
to personal assistance.
If you've recently read a book you think is relevant to the Institute
and would like to offer a short review, please contact our webmaster.
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New "Events" section
http://www.independentliving.org/news.html
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Send us information about your meeting, conference, protest action or
whatever. We'll keep it posted until the date of the event, and, if
appropriate, follow it up with a text in our Library. Contact Kris
Walmsley at mailto:[log in to unmask]
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The previous newsletter
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Our previous newsletter on Networking increased traffic on the
Institute's website, and helped put people in touch with other groups
and individuals. Especially popular was the list of Centers for
Independent Living (CILs or ILCs). We've updated and added to this
list, but are dependent on you to keep us informed of changes. This is
also true of the Links page. Check if your website is listed correctly,
and get in touch with us.
The Disability Organizations Network (DisOrgNet) now has over 190
organizations from around the world offering information to partner
organizations for joint projects, events, sharing resource persons for
lectures, training or technical assistance, for study visits,
internships or other cooperation including funding. Add your
organization now at:
http://www.independentliving.org/donet/index.html
Coming issues of the newsletter
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In upcoming newsletters we take up themes such as Universal Design and
Assistive Technology. These issues determine to a large degree the
quality of our every day life. In order to improve our situation,
individually and as a group, nationally and internationally, we need
better information about legislation, financing, design solutions and
user support. Send your articles, references to useful source of
information, reviews, etc. to mailto:[log in to unmask]
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Don't forget to visit our other on-line services
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Accessible Vacation Home Exchange
http://www.independentliving.org/VacationHomeSwap.html
Swap your home during your next vacation with somebody in such
destinations as France, Egypt the UK or Canada. We have nearly 100
attractive offers waiting for you! Our base of participants list the
accessible features of their homes and dates they wish to travel.
Get published
http://www.independentliving.org/Publish.html
Expose your articles, reports, training manuals or other resources to
disabled people, researchers, service providers, government officials
and policymakers all over the world.
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© 1999 Institute on Independent Living
http://www.independentliving.org
Dr. Adolf Ratzka, Director
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Terry Skehan, Administrator
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Kris Walmsley, Webmaster
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