A friend through Special Kids in The Uk has made his local News Station in an attempt to raise the awareness of how the Services to disabled people are just so inadequate and poorly organised.
http://news.bbc.co.uk/local/york/hi/people_and_places/newsid_9363000/9363885.stm
The aim is to get as many clicks on this site as possible to get it to go national.
The Article is about services to children but the services once that child transitions to adulthood is even worse.
We are facing terrifying financial situation as Jonathan and Rosie's education comes to an end this Summer. The financial support we have had for them since we adopted them will come to an end. We are still full time carers, we cannot go out to work and meet their needs at home so we have no way of replacing the finances we will lose.
On top of this loss we will be faced with a bill for their care package too. We are having to look at the unthinkable situation of having to give up caring for them at home and have them placed into a residential situation then selling this home we have spent so much time and effort and money getting adapted to meet their needs and buying something smaller for the 5 of us. This would mean we could not have Jonathan and Rosie home as we would not have facilities to meet their needs at home.
It is a riddiculous situation as the cost of a residential placement for each of them would be far more than the money we are losing.
I dont know if there is a way round this...we would certainly appreciate your prayers to this end.
But please go click on the link about Andrew's daughter....worth it just to see her beautiful smile!
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Tina
PLEASE don't assume that Jonathan and Rosie will have to move out. They will be entitled to support from the local learning disability team and various benefits (income support with incapacity top-up, plus severe disablement allowance) and Rosie at least should be able to access additional funding through Continuing Healthcare because of her complex support needs.
One of my friends who has a PMLD label went to a Further Education college for a few years and had a really good time so that might be worth looking at too.
I was in a nursing home for young adults for 9 months and I would do literally anything to avoid any human being getting sent to one of those places again. Neglect is pretty much guaranteed and abuse is quite common.
If you guys decide that it would be good for either of the kids to leave home then look at a supported/independent living setup with one or two housemates and person-centred care rather than a big institution. That's more like the lifestyle that any young adult has when they leave home.
I have quite a lot of experience sorting this stuff out, maybe I can help? Let me know.
Hang in there!
Becca
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