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Independent Living Center – Focus Group

September 20, 2003

The purpose of this meeting was to establish better assistive technology (AT) resources for the consumers utilizing independent living centers (ILC). Staff from several ILCs gathered to discuss the possible avenues and steps to be taken to better the AT resources.

One major consensus is the necessity of a central, well-funded demonstration center to display the high tech AT. There are ILCs that have the low tech AT, but lack funding to bring in the vendors or stock the more expensive wheelchairs and such. This demo center would be a great place for consumers to learn about and test new technology. It would be better for the center to be supported by vendor(s) to allow for a greater diversity of wheelchairs.

Although a centralized demonstration center would be ideal, it was pointed out that transportation is a factor that could decrease consumer’s participation and willingness to get to a center such as this. Then the load falls back onto the vendors who deal directly with the consumer – and one focus group participant mentioned that there should be a survey to decipher between the good and bad vendors. “Consumer Reports” should be involved in rating the wheelchairs and other AT.

Another piece of information to be shared at the ILC or demonstration center is funding resources. Information on all the corporations, such as the MS Society, should be disseminated to allow the consumer access to as many funding sources as possible.

Continuing with education, there are certain questions that the consumer should ask a vendor when looking at a piece of equipment. Many consumers do not know what to ask and could possibly end up with a poorly matched device. It would be beneficial for those ILC/demonstration centers to provide a list of questions for the consumer to base his/her own ideas or questions.
Because transportation and funding are issues surrounding the demonstration center, there must be a way to reach those consumers who are (stuck) at home, but need to learn about the new AT. Computers could be a link for this access. There could be a web page constantly updated with the newest technology to provide the consumer with an informed decision. This idea sounds great, but computers themselves create barriers. People do not have the funding for this, software is needed for the different computers, and there is no such web page created (yet). For those consumers who do not have computers, ‘Iowa for AT’ has devised a supplemental plan. Consumers call ‘Iowa for AT’ about a certain device, someone then compiles all of the possible information about that device, and the information is sent to the appropriate ILC for the it to be distributed.

Motivation is a key factor in enabling people to find these resources and/or new technology. To brighten people’s spirits, books compiled of about 30 personal stories should be distributed. These books will tell individual stories of success with AT and provide further information and motivation for those consumers fighting with depression. These stories will tell what people have done with their lives and help the reader know what is possible. Human interest will always motivate.

Lastly, several research projects are being conducted by Washington University, investigating people in the community, their happiness with their AT, people at work, among many others. The researchers are always looking for people, and if any of the focus group participants know of people who are interested, those possible participants can call Wash U directly, or the ILC representative can give that consumer Wash U’s research information. Right now Wash U is looking for people with disabilities who work.

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