Severe Learning Difficulties / ASD - what happens at 18????

[HardHatForTesco]

I have a child who will never live independently. Currently in special school, has HR DLA for mobility and care. I know that things will change when he is older but can someone who is going through all of that now give me an insight into things - ie legal / benefits etc.
I know things are changing all the time but I would really appreciate an insight into what I might be facing (others are facing now) At the moment I claim carers allowance, dh works and we get tax credits.

I suggest:

1. When he is 16, ask the DWP to make you his appointee - i.e. they recognise he does not have the ability to handle his finances. You have to open a bank account in your name only, if you don't have one already, so they can pay his benefits in, for you to administer on his behalf
2. Assuming he is still in school from 16-18, apply for ESA on his behalf. As he will still be a student, he should be put in the support group. You have to give up child benefit, but ESA should be far more. DD gets £125 per week with the severe (?) disability premium!
3. Check the rules, but ask the school to apply for the disabled bursary, if it still exists, which was available from age 16 or 18? (It was about £1,200 pa, but I only found out about it when DD was 18.)
4. If he does not have one already, ask social services for an assessment of need, and a carer's assessment for you (and DP) - what do you want for him long term? Live at home, supported living or residential care? If at home, would you like care workers to come into your house to provide care for him and/or give you respite? Would you like him to attend FE college, or if not, day services if your LA runs them? He is entitled to education upto 25, but sometimes parents realise they are flogging a dead horse, if DC does not want to go!
5. Get an assessment of mental capacity when he is 17, so you can apply to the Court of Protection to be his Deputy for health and welfare from when he is 18 - this means you have the power to make decisions, in his best interests, and be consulted where others make decisions. I believe it stops the LA from shutting you out from decisions like where he is going to live, etc. They are supposed to act in his best interests, but it could end up in their best interests, if you are not careful!
6. Look around at what is available for supported living or residential care, if you are considering that!

Thank you! That is very informative. I've got a few years to go but had a lightbulb moment yesterday and realised I'm in danger of drifting along in a bubble with no idea of the practicalities.