2 replies to this topic

[gpickren]

I have been trying a help a quadriplegic friend get information on adaptive equipment which would allow him to better operate in his environment, and sad to say, the only organization that has been any use thus far is Google -- not that they helped directly -- but Googling for information. By Googling, I have read specs and some reviews for different types of head mice and I have found a PC controlled universal remote which is capable of operating a wide assortment of external devices such as TV, stereo, DVD players and the like. Both are reasonable in price.

But when I have called charitable organizations who profess to serve those who need adaptive devices I have experienced no help at all. I first called an organization named Givetech which advertised that it "provides technology to the severely disabled." After leaving two messages, I have not received a call and now it looks like their IP address has expired.

Then I called the Dayle McIntosh Center which states that its mission is to assist the disabled with integration into the community including assistive technology: "The Dayle McIntosh Center provides services related to assistive technology (AT), which encompasses any equipment, devices, or structural modifications that enhance the ability of people with disabilities to live independently. Individual assistance is provided for consumers, who need help with researching various assistive technology options, identifying potential funding sources for acquisition, obtaining professional assessments, and using and maintaining equipment. A computer lab with several adapted systems and internet access is also available for client use."

After two calls and several days without a return call, I managed to get a live person, however, he could not give any answers to my questions and referred me to Atech, a Goodwill affiliate for an evaluation. Atech was easy to contact, and told me that they could give my friend an evaluation, however, their evaluation was fee based and he inquired as to what kind of insurance my friend had. After hearing that he was under Medicaid, he said the insurance company would have to approve an evaluation and that they charged $50 an hour with a 7 hour minimum. This came out along with many other words that seemed obfuscatory, so I tried to see if I could actually get some answers.

I told him my friend speaks clearly and has good control of his head with a good range of motion such that he is able to operate an electric wheelchair with a joystick. I said "he can get a Smartnav4 head mouse for $499 which comes with a full refund if he doesn't like it. Is there any good reason why he should not just try this mouse instead of spending $350 for an evaluation to tell him if he can use a mouse?" This produced more words, but no definitive answer and a ran out of patience.

I am hopeful that my experience is not representative of so-called "advocate" organizations, but thus far I am not impressed. Neither was I favorably impressed by the social worker at the hospital whose purpose, it seemed to me, was to give me all the reasons why my friend could not be helped, especially by her.

So tell me, is this typical or have some of you had better experience? Also, this forum does not appear that active. Are there some others that have more activity?

[Ches]

This forum is pretty active.. unfortunately when you get into specifics you narrow the chances of a reply.

I dont know anything on this matter.. Only thing that comes to mind is the National Seating and Mobility.. which I know is just for chairs and simple adaptations, BUT those reps are pretty good at what they do and could possibly direct you elsewhere. Who took care of his chair at the hospital? Are you in the states?

Edited by Ches, 05 August 2008 - 08:57 PM.

[gpickren]

No one at the hospital took care of his chair. The tenacity of his mother with the state agencies produced the chair. The mother sent in complaints to the state board which included the failure of the hospital to change the diapers of two comatose roommates among other things.

I am in California.