Down-Syndrome Grants

[Gingerlou14]

Hello,

I am new here and I am in seek of advice for my sister-in-law who has Down Syndrome, Dementia and Epilepsy.

She is 54 and has lived at home with her Mother all her life. This April she moved in to a Residential Care Home. We have had ongoing battles with Social Services and the Wheelchair Service to help her get the appropriate equipment she needs.

She needs a Rise and Recline chair and we have been informed it will cost us around £2500. As a family we are aware that there is no funding available for items such as this, but I was wondering if anyone knew of any charitable services or grants that can help assist us to get this chair for her?

Thanks in advance for anyone's help / suggestions.

[LDAutie]

hi Gingerlou14 i dont have a lot of time to write this so i ll come back to it later today but if you cant find a grant or fundraisers like the lions club (i think thats what theyre called) or make a just giving or patreon account to raise the money-i know of loads of disabled people who raise money using those formats,look into remap-ive known of them for many years: remap.org.uk/ they may be able to make a seat raiser better made for her needs, but you can also google 'seat assist uk' or 'seat riser uk' and youll find some good ones to look into and see if they meet her needs,until a chair can be bought.

i know what you mean by the wheelchair service, im physicaly disabled as well as all the other bits, and because i can technicaly do some walking (without noticing i have very severe peripheral neuropathy, beyond acute pain no feeling in feet or legs and now spreading to arms and hands,plus severe foot drop on both sides so a high fall risk) they only prescribe me heavy NHS wheelchairs which i cant push myself in, i needed a super light weight active manual wheel chair (i chose the quickie neon 2),and i had to go threw best interest decisions and then my appointee bought it out of my savings,costed a few grand but an OT and physio measured me up for it and trialed me in it before giving the go ahead. i used a disability shop called the complete care shop,i can definately vouch for them. my chair was bespoke aand had to be made in germany (or somewhere around there) so it took a long time as it was very specific, but they make sure you get the right goods.

the other option woud be looking on ebay or somewhere like preloved for a second hand riser chair,making sure its got the fire retardent mark,getting it tested out before buying,get the electrics PAT tested by a company who will PAT test one off items and hopefuly living near enough to being able to pick it up or paying some one to pick it up and drop it off as most sellers of things like this will state they must be picked up/no delivery.

there are UK groups on facebook aimed only at selling disability equipment as ive used these before to sell,they may be worth a look on,but if you have never been on facebook people may be less likely to sell to you if you have a new looking account.

[Gingerlou14 in reply to LDAutie]

Thank you very much for your detailed response. Means alot and has been very useful. I will look in to the things you mentioned above.

We did find a charity that you can write to and ask for a grant, so I am wating to hear back from them.

The wheelchair service, I find it very sad. I find it sad and frusrating that (as we know all comes down to funds) people often do not get what they need as it will always cost too much money. I am glad you managed to get what you needed in the end.

Thanks again.

[LDAutie in reply to Gingerlou14]

absolutly no problem Gingerlou14 , any time!

i do hope your sister IL gets the chair funding as soon as possible or if the wheelchair services are not helpful-threw another way. if i can help in any way though please just shout me, ive got a server with unlimited bandwith/space/databases so i can always help with making/hosting a site for you to use for spreading your SILs story if it ever gets to that stage.

[InclusiveZoom]

Please let her know about Inclusive Online Activities - all our sessions are on Zoom and we aim to have huge fun. She will be joining a smashing group of people all who will want to reach out to her in friendship. For free trial sessions just get in touch. I can easily send you a Zoom link, Carol x