Researching options

I haven't written a blog on here for ages, didn't realise how long ago it was!

I have had my 'head in the books' so to speak or rather glued to the computer screen, doing some serious research in hope of finding further options for myself and others with Ataxia.

A difficulty for adults with acquired conditions is finding the funding for things they need especially communication aids which even the cheapest can be £2,000 or more.

As communication is particularly important to me I have been studying different systems and trying to find a solution to help, with a communication aid that costs under £500.

The release of the new Apple iPad is looking particularly promising due to a bigger screen than the iPods for those who cant manage the tiny screens and the wide variety of cheap apps that can be put on it to do things from basic speak the sentence you put in, to text magnification, screen reader (built in), IR remote apps which have potential to turn it into a jumbo TV remote control, handy for those who struggle with tiny buttons on regular TV/DVD players etc.

Another promising discovery I came across was a solution for a lap tray for wheelchair users. Regular lap trays are hard to keep on your lap especially if trying to propel at same time (and like me have sporty style chair with no arm rests) and keep my lightwriter on without it sliding off as I move. I found one with a velcro top which has D rings for you to attach things to or stick velcro on bottom of a tv remote and stick it to top holding it steady while you press the buttons. This would be particularly useful for people with tremors.

I have ordered one to look at and it should be here sometime next week at latest, I'm not sure if couriers deliver at bank holidays, it might turn up Saturday!

Still a month before iPad is released in UK so it will probably be May by the time I have had chance to set one up as communication aid/IR remote and let you know how well it works but I hope to have more details on the tray for you soon.

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Comment by Kati on April 5, 2010 at 7:30am: Hi Scott,

not sure how things work in US but I think the Medicare would cover things like communication aids as long as it is a 'dedicated device'. so for example they probably wouldn't cover an iPad even with Proloquo2go on it but may cover a Dynavox even with internet access if you weren't able to access a computer any other way if for example you needed scanning/switches or eye gaze.

In the UK some NHS trusts will fund communication aids and money IS sent from central government for stuff like that but once the council/NHS gets the money they don't necessarily have to use it for that if the money is needed more urgently elsewhere. So people may apply and be told there are no spare funds. This mainly affects adults more as children can get aids like this via education department and having a 'statement of special needs' that shows what they need to access education. Some specific charities will help, scope will buy them for kids and adults with cp etc. I did ask Ataxia UK before was told there funds had run out for that year, so it was lucky for me that my NHS did agree to pay for the Lightwriter.
I have since heard of the Sequal Trust who will raise money for communication aid for someone, but I haven't heard of many others in the UK.

Comment by Scott Orn on April 3, 2010 at 12:32am: The Ipad looks really awesome. Have you come across any programs for funding necessities like you referenced? Anything you can point me to in your research? I can see how that would be a big problem.

Also - hope all is well with you and Inca.

Scott