Transition to adult care - severe autism & learning disability

[Powerdough]

DS will be 18 in March next year. I am looking for pointers for best practice re: transition, and social care provision. He has a learning disability and severe autism, is non-verbal and needs 1-on-1 support at all times. I am quite clued up on education, EHCP etc (three SEND tribunal wins) but now I feel I am back at square one. Is there an equivalent of IPSEA or similar helpline for adult care? Is there a Code of Practice that LA must follow? The Care Act 'principles' seem so wishy washy with nothing enforceable. DS doesn't even have a social worker because 'there is none available'.

ds2's transition was started well before this (around seventeenth birthday). I think you need to get in contact with children's services and ask why it has not been started. Not that it has done ds2 much good as he has now been booted out from the system BUT he has nowhere near the difficulties of your child.

My daughter is 23 now, she was already receiving a small amount of direct payments but the move to adult services greatly increased this and we could finally access respite. She was assigned a social worker who assessed her using a point scoring system and then we had to essentially barter with her as a manager had supposedly marked the assessment down in certain places.

Our LA seems to only assign a named social worker during assessments then you return to the pool.

I don’t know of any equivalent to IPSEA for community care law; but Luke Clements is a leading authority on it for England - try to attend any lectures by him if you can; or read his books and website:

www.lukeclements.co.uk/whats-new/

A pp may be referring to a RAS - resource allocation system. The assessed needs are entered into a points based scoring system - which then calculates a sum of money to meet the needs. Beware that sometimes the RAS may assess the needs as say scoring 60 points; but then applies a 10% deduction, giving 54 points. The sum awarded must be capable of meeting the needs and that is at the rates, parents have to pay; not the rate the LA pays, which may be considerably discounted, given their strong negotiating position!

Also, DD’s SW told me the RAS didn’t work for her, because she can wash or feed herself; but she needs 1:1 supervision all her waking hours because of her medical condition!

I suggest you ask for a carer’s assessment for yourself at the same time. I have a booklet by Luke Clements on Carer’s Rights - I don’t know if it’s still in print?

PS - I often read Community Care, an online journal for social workers. It has some useful articles sometimes, and often highlights relevant cases or LGO comments.

Finally, if I were you, as pp has recommended, ask SS what they are going to do about transition, and request an (re)assessment for social care and support with a view to adulthood; but once that is underway, ask your CCG for the checklist for adult continuing health care (CHC) funding to be done too. DS might reach enough of the domains for cognition, communication, etc to meet the criteria.

Look online for the NHS guidelines on Continuing Health Care Funding for Adults, irrc it has the checklist in it in the appendices somewhere.

The big advantage of NHS CHC funding is that the NHS is free at the point of care, unlike social care, so DS won't have to pay any of his benefits towards it. If DS's social care is funded by social services (SS), the LA takes all the benefits and leaves the young person with about £26 a week to cover clothes, toiletries, holidays, a new television, going out, etc - I've been told its not enough. Even with NHS CHC funding, if DS were to live in a residential care home, he could still get his DLA mobility, although DLA care ceases except for the days, he is in your care or comes to your home for family visits.

My son is 22, severely autistic with severe learning disability. He stayed at the SN school until the end of year 14. Tribunal for placement at a SN residential college which we won. He’s just started his final year there. It is the most amazing place and he has thrived there. It’s a 38 week placement and the perfect stepping stone to adult social care. It’s super expensive, nearly £200k a year so a tribunal was inevitable I think!

The next step is super scary as everywhere Ive contacted (mostly community/village) type placements have no spaces, huge waiting lists and no staff. My son need 1:1 at all times 2:1 in the community. Funding won’t be an issue as he’s CHC funded but there are no staff. I won’t settle for a crappy placement so it looks like he’ll be coming hime again at this rate! We have a care manager rather than a social worker and she’s very helpful.