Our 23 year old son who has Down’s Syndrome, Autism and is classified as DeafBlind has recently moved into a residential care setting where he is really happy and does lots of activities e.g. swimming, sensory centre visits etc. He needs a consistent timetable of sensory activities and his Deafblind report recommends that these should be funded.
The LA are undertaking a financial assessment and want to take all his benefits leaving him only around £30 a week left as ‘spending money’. They argue that he can use the spending money to fund the activities. In actual fact this wouldn’t cover his activities and he would be left with nothing for other expenses e.g. hair cuts, snacks etc.
Does this seem correct in anybody else’s experience?
** Just an update: we sent estimated weekly costs and receipts to the LA along with stating the reasons why we felt he needed these activities as recommended by his Deaf blind report and also for his well-being. The LA have agreed to offset these costs and have lowered the financial contribution our son is expected to make . Thanks everyone for your help. **
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BlueSky444
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it doesn’t sound right. If you have report saying he needs these activities and he couldn’t afford them under this arrangement then their proposal is not aligned with his needs. I’d challenge it.
Thanks, yes we feel this way too. We’ve certainly been challenging it but just wanted to sound other people out to make sure we weren’t missing anything.
Can you please keep us up to date with how you get on as I am in a similar situation with my SS saying they only fund care. Activities have to be funded by my son, but like you say, financially that is impossible.
It's shocking that the LA wants to leave your son with so little money for activities. £30 would just about cover two cinema tickets and some popcorn where I live!
I hope you don't mind me asking but we're always looking for case studies of people hit by unfair social care charges from their council. Would you be happy to share your experience with our storytelling lead? You could share your story as an anonymous quote, if you prefer. Let me know if that's of interest to you. My email address is victoria.wright@mencap.org.uk if you'd like to email me.
The LA has now agreed to allow for the cost of activities plus other expenses (see update above) so that our son’s contribution towards care has been lowered. We’ll certainly contact the helpline in future. Thanks for replying.
Hi. Our son moved into a residential setting in May but we’re still waiting for a decision from PIP! His care component definitely stops but they’re still deciding about his mobility component. It seems to depend on whether the residential setting is funded by health or social services. Our son’s UC has continued as normal and wasn’t affected. The Local Authority do ask for a personal contribution from our son for his care- hence my original question on the forum. Hope this helps!
We still manage them both although the UC correspondence address is the residential home. UC say they cannot have a different address for correspondence than where our son is living. PIP say they can still send letters to us.
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