Care assistant costs fir post 18

[AuntyJackiesBrothersSistersBoy]

My son is nearly 18. He has autism but has excellent speech and has slipped through the net in the area we live, having been told he’s not “bad enough” as in need. However, as he’s deteriorated over the years, we (and the professionals) have accepted that actually, he IS very disabled. The last service meeting I went to was embarrassing as we went down a list of recommended therapies which never happened.

Our area has crap (non existent autism services beyond diagnosis). We’ve battled this over the years with our MP because hundreds of kids have not had their basic needs met.

We are now going forward to him having some supported independence as a young adult. Personally, I don’t think he’ll manage but if he wants to try, he should be given the chance.

When DS was six weeks old, I opened a savings account for him. Every birthday he got money (one of his autism traits is NOT wanting gifts/things wrapped/new clothing/surprises). So, money slowly built up, over the years. My dad died of cancer 12 years ago and left DS a small amount so, that too went into the savings account. I worked full time and even when I became a single mum, managed to go without certain “luxuries” so that ds’s university fund/new car at age
18 fund/gap year fund, would accumulate. Of course, DS isn’t going to university. He’s never had a school trip. He can’t learn to drive and he needs support when he leaves the house, even on short trips because he is very vulnerable. Now, I find myself in the position where, his support must be paid for by him, once he’s 18 because I saved up for his future. I’m sad and angry and think of all those times when I had very little money and my mum used to say “have a little borrow from ds’s account til you’re back on your feet”. On principle, I never did.

AIBU to be annoyed that DS must pay for his own care until his small amount of savings are used up? Genuine question. Bearing in mind, for years he had no assistance because our council just didn’t do Autism Services and the best they could offer me was a coffee morning support group for mums and carers, once a month.

I kind of wish I’d spent it on holidays (except he wouldn’t go; never wanted to leave the house) or a new car when mine used to break down on the way home from my endless night shifts 😐

I totally agree with you it’s a bit crap and doesn’t seem any point in saving for them really which is a bit sad as it affect any benefits if they have savings over £6000 you get money deducted from their benefit.

Our ds is also 18 and is autistic with severe learning difficulties and like you we saved early on for him thinking the money would help to buy his first car, but quite early on we realised that was never going to happen, and all our relatives gave money to go into his account rather than a gift that wouldn’t be used.

We were also approached by some well meaning and kind relatives who wanted to leave money to him in their wills but we had to say no as it will affect not only his benefits but also having to fund his own long term care from money bequeathed to him.

I know the elderly do fund their care from the sale of their properties until the money runs out and then the local authority take over, but it’s yet another stab in the heart again when you’ve been trying to do the best for them and save a little for their future and even that’s taken away from you.

Same with my relative, Grandparents bought some premium bonds, so now in adulthood, no means-tested benefits apply.

Your son will be eligible for PIP because it's not means-tested. If you don't already have it, then do apply. It sounds as though you have up to date evidence which will help for both care and mobility.
It's not easy, keep at it if you are refused and go to Tribunal if necessary.
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/how-much-you-get-and-how-long/

Re carer's costs, the Council have a leaflet with carers and their specialities, ask for a copy.

You need to set up a trust for him as this way the money will not be able to be used for his care.

There are specific ways to deal with money to ensure it doesn't ruin any entitlement to benefits but PIP isn't means tested anyway.

I'm not sure where your son is education wise don't write him off - my daughter is autistic, has a job and has started university - albeit living at home. She's taken time to get to this stage, she wasn't ready at 18, but is enjoying the challenge and is getting lots of support from the university. Like your son she is fully verbal but quite severe traits in other ways, girls hide them better I'm told.

A friends son is at further education college studying rural skills, whatever that is, despite pretty severe autism.