Supported Living for Autistic Young Adult

[willowthecat]

My son is almost 20. He has autism, epilepsy and severe learning difficulties. He is about to move to supported living - next week ! It's a big step and I'm feeling nervous but it's a beautiful flat and he knows two of the carers very well already and it's close to us so all good really except the lingering feeling of regret and guilt that it's turned out this way. I know rationally it's the best option for him long term and we will see him regularly but just wondered how others have coped with a similar move.

Well done for getting this organised. My daughter has SLD and lives at home at 25. We are looking for somewhere for her to live. SW has shown us 1 house that was inappropriate (and a shithole).

How long did it take you to get everything in place.

Hi I think I recognise your username from a long time ago on SN children though I used a different username then probably cyberseraphim. Yes it's a long long process now to get any ongoing support and there is no map to this country. I have been actively pursuing this for many years now having been warned it would not be a straightforward process regardless of the level of need. There is always something. Decentralisation. Change to Personal Budgets, Covid, Carers Recruitment Crisis. There is never a good time so just keep going. I was offered inappropriate places at first and it's disheartening but don't give up. Keep asking Social Work for more options.

@willowthecat Yes, I have been on here for a while. I hope it works out well for your son. This part of the special needs journey seems much less sign posted than education etc. and it is hard to get decent advice.

We tried to get this underway last April and it took until Oct to even be allocated a LD SW. The review SW did get her respite budget doubled which has helped. I know I just need to keep on but it does grind you down.

I forgot to say - I don't if it's the same in your area but in our area Social Work have a list of all young adults looking for supported accommodation and those who can provide it will get in touch with Social Work if they see someone on the list that is a good fit ( in their opinion anyway) for what they provide. You then have to visit and discuss with them to see if you agree with their view that it's a good fit. So it's a good idea to keep in regular touch with your social worker and ask him/her how things are looking in your area.

@willowthecat How did the move go for your son and how is he getting on?

My daughter's social worker kindly organised another total inappropriate shithole for us to view today. It was even more unsuitable than the previous. This is such a disheartening process.

Do you have a good relationship with your social worker ? Can you ask him/her honestly why these unsuitable places are coming up ? Are you still in touch with any families from the school years ( I know it's much harder networking after school) - where are they now ? Are there any online carers' groups that you could join and ask a wider question about the standard and availability of supported accommodation in your area ? Things are going well so far for my ds but it's early days and we will have a better sense of how he is settling in the coming weeks. The flat itself is amazing , ds' name went down for it before it was even built so it's been a long process!

@willowthecat Thanks for your reply.

Unfortunately, the learning disability social work team seems very short staffed. They initially push cases on to the general adult team and it took about 6 months to be allocated a member of their team. He is newly qualified and seems to have no life experience as well as no social work experience. He sends emails that appear like copy and pastes from text books! He basically thinks his job is to send us to view any vacancy that appears as a tick box excercise.

We have found a suitable place for my daughter but would be described as a care home, out of borough and alsi very out of favour with the current community supported living model, so we are offering to look at their suggestions to discount them. My LA is known to have poor provision, my daughter went to school out of borough, college out of borough and currently goes to a day service out of borough! My friends all seem to have the plan of having their adult kids live at home forever so no help there. I guess we just plod on.

I hope it continues to go well for your son and you can make any tweaks he needs to his care. It does should like you went through a long process too.

My son went into supported living just after Christmas,it’s been an emotional journey but he is finally settled. He has quadriplegic cerebral palsy and associated learning disabilities so needs lots of support….. it’s a huge step,but as an older parent it was a vital step that needed to be taken. My advice would be to search yourselves for places available as very often social workers are limited by funds,it may mean going slightly out of area…but the right place will be out there somewhere eventually…. Good luck x

That's about the same as us then justhetwofus - Our ds moved in on January 23rd. It was more upsetting than we were prepared for emotionally but there is no going back as we are older parents too so simply impossible to go on caring at home even with patched in carers. He is doing well and seems happy and the flat is modern and well set up for him and he even has some familiar carers from his temporary respite home so it's all going as well as can be expected. But it brings back a lot of difficult emotions as to how we ended up here when his birth seems only months ago in some ways and hundreds of years in other ways and it's not what we expected to be fighting for - it's very self indulgent and self pitying really but I think we are entitled to a little bit of that and of course - it's what makes his future life secure and happy that is important.