Independent Living Institute

Newsletter 4/99

Newsletter Index and Info

Personal Assistance
--------------------------------------

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.
Independent Living Institute

**************************************************
Personal Assistance Network
http://www.independentliving.org/panetwork/index.html
**************************************************
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

**************************************************
Global Networking (formerly Disability Organizations Network)
http://www.independentliving.org/donet/index.html
**************************************************
Global Networking is an on-line database designed to give your organization world-wide exposure. Presently, some 150 organizations from all over the world are registered with information about mission, philosophy, activities, fields of specialization, resources in terms of experts and published materials, capacity for accommodating study visits, internships and traineeships, interest in participating in joint projects with groups or organizations in other parts of the world.

**************************************************
Independent Living Virtual Library - Personal Assistance
http://www.independentliving.org/Library/Library_Contents17.html
**************************************************
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/docs4/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/docs5/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/docs5/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.

**************************************************
State of the art in personal assistance services in your country http://www.independentliving.org/panetwork/questionnaire.html
**************************************************
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.

**************************************************
Assistant Referral Service
http://www.independentliving.org/assex/index.html
**************************************************
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.

**************************************************
Discussion Forums
http://www.independentliving.org/cgi/forum/bbs_entrance.cgi
**************************************************
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.

**************************************************
Books on Personal Assistance
http://barnesandnoble.bfast.com/booklink/click?sourceid=256763&is_search=Y&keyword=disability+personal+assistance&match=exact&options=and
**************************************************
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 admin@independentliving.org.

**************************************************
New "Events" section
http://www.independentliving.org/newsframe.html
**************************************************
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 Adolf Ratzka at admin@independentliving.org.

**************************************************
The previous newsletter
------------------------------
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.

Global Networking now has over 200 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
--------------------------------------
In upcoming newsletters we take up themes such as Universal Design, Personal Assistance 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 admin@independentliving.org

**************************************************
Don't forget to visit our other on-line services
**************************************************

Accessible Vacation Home Exchange
http://www.independentliving.org/vacaswap.html
Swap your home during your next vacation with somebody in such destinations as France, Egypt the UK or Canada. We've got close to 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.

==================================================

---