Wondering if anyone has had any luck obtaining a communication aid for their child. although Sam is decannulated, he is still unable to speak and it is likely to be a long time before we get anywhere with that. we have the opportunity to trial a speech device (liberator) for Sam for a couple of weeks. Has anyone found anything that works well for their children. Sam is cognitively aware and extremely literate so needs something pretty high tech.
another question is funding - the one we are trialling is almost £3500! It's a lot of money, which we cannot afford - is there a good charity out there who would help. we dont qualify for the family fund.
TIA
7 comments:
Hi Julie
For funding: have you tried BDF Newlife. They provide direct help and care for sick and disabled babies, children and their families if the condition is from an inborn birth defect. The number is 08700 707020 their is also a nurse service for advice. It is not means tested. Their website also gives information.wwwbdfnewlife.co.uk
Thanks for that, they funded a car seat for Sam a couple of years ago and I did see them at Naidex this year, will give them a go.
Ta x
Hi Julie,
No advice on what to use. Sorry. We've only tried Big Mac (very basic one button thing) - and would be like £10!
Has Sam got a statement of special educational needs? I just ask, as if he has, and there are things to do with communication in it, then this may be a way of getting funding for one too. I'd have thought even without a statement, the LEA/ school should be providing some sort of communication device.
Another charity I know of is Children Today. I think they may be more medical equipment, but it is worth googling and looking at their site. We almost applied for a Medela through them.
Hope Sam is enjoying trachy free life!
Laura
Thanks Laura, I'll look at Children Today and see what they say. Sam is statemented, but unfortunately there doesn't seem to be anything in the school budget. they are still smarting from losing the continuing care money that they got when sam had his trachy!that paid 50% of his TA's salary. Sam is enjoying the trachy free life a great deal, it's good to see him toddling round the playground on his own!
Julie
Julie, the school budget is all well and good, but a statement is a legal document, and the school and the LEA have a duty to fulfill things in it. I'd be inclined to push this one to get the device.
I seem to remember when Dominic got his statement, our Speech Therapist said that if he did need a communication device it would make getting one easier.
Is there any sort of loan equipment service you could borrow one from?
Still on this subject, I have just heard you can get an app for the iphone/ipod touch called proloquo2go which is a lot cheaper and looks pretty good, has anyone used anything like this?
Sam is currently trialling his alt-chat from liberator for 2 weeks - his first comment was to James "computer can i have" hahaha, sam loves spending time on the computer!
Hi Julie
I am afraid I don't have any personal experience on communiction aids but would have hoped that your SLT would be able to advise what is most suitable and best on the market. Have you looked at The Cauldwell Charity for help with funding www.caudwellchildren.com and the website www.findavoice.org.uk has some good information about equipment etc. I think they are specific to helping families in the Kent area but have links to other places which are UK based. Hope this helps!
Amanda
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