to ask if you have an adult child with learning difficulties/ASD where do they life?

[Sanjii]

DS has autism and learning difficulties, not even 10 yet. I live in the here and now as life is so consuming and never really think about the future (weird, I know).

I had a long chat yesterday with a friend who asked what would happen to DS when he is an adult. I said I didn't know. I was thinking some sort of supported living. She then said she has elderly neighbours who are in their 70s still have their daughter with down syndrome living at home. I then had a Google and I am none the wiser what the standard is in the UK for those, who are unable to live unsupported due to learning difficulties.

Any posters on here with adult children who could tell me?

My son is 16 but our (semi) plan is to convert some of the house into a flat so that he can live semi independently. He will be fine in some senses but is very vulnerable so I would not be happy about him living alone.

I hope he will be able to get a job in quite a supportive setting locally to us (but that's quite tricky as at the moment he wants to be something which isn't overly realistic and is pretty fixed on it)

oops, posted in the wrong section. will ask to get it moved.

Hi OP.
I don't have an LD child, but i do work in a specialist LD health team.
I don't think there is a standard , its an individual service user/family decision.
I know people that plan to go into supported living once they leave school, others that do for unplanned reasons, such as family illness, and others who stay living in the family home.
My friend has a daughter with DS who is 13. They plan for her to go into supported living in her early 20s, as this is when a lot of people would leave home, and my friend does not want her daughter to always be dependant on her, or to always be a carer.
Its much more common in my parents generation to keep people at home, as the alternatives were the big asylums, and often, they were told their child would not live long.
There are some amazing supported living houses.

My best friend is a social worker for adults with learning difficulties.
It's obviously hugely varying due to the variety and severity of disability, but many of her service users are in a supported living environment.
You could get in touch with SS to get some more information about future possibilities, but obvs your DC will need assessing once an adult for a proper answer as to what they feel he requires.

Someone I know lives in a complex near us, he has autism and moved in when he was in his early twenties. He actually has his own one bed apartment but there are support staff on site 24/7 who help him with food shopping and other admin.

I have a 9 year old , my plan is to get him into some sort of supported living . I will not let my dd be his career and I feel it's kinder to let him live with other adults like him so he can have a 'normal ' life . He is super sociable and I'm worried it will be more of a shock when we both die and he has to go into care then . Of course I have no idea if this is possible or will be with the government when he is 18 and dh is a high earner but he will be retired by then so who knows .

My son is 19, he is high functioning. Currently he still lives with us as he doesnt want to leave yet (no grown up responsibilities) he is about to go to a specialist college for the next 2 years which weve fought a long time for. The plan is to teach him independent skills ourselves (have been for years but not sticking) college will also support this and help him learn skills as he isnt going to want mum chasing his tail forever. When he is ready we will look at supported living locally, or a flat of his own with either myself or a carer come in to assist. But hes been told he can stay as long as he wants and there is no rush but he will need to contribute financially eventually, which he does understand (far cheaper then moving out).

Your son is still very young and there is a long way to go before you need to think about future living arangments x

My uncle is 60 and has downs syndrome.

He lived with his parents until they died, my grandad died when uncle was about 30.

He then lived with my parents (He is my mum's sibling) for a few years. My brother had left home s few years earlier and I'd just graduated and was living elsewhere.

My mum started looking at supported accommodation etc and after about 8/9 years with them he moved to live with what was basically foster care. The lady he lived with was a single parent with a youngish daughter at home and a young adult daughter who'd left home but visited regularly. She also had another caree (female slightly younger than my uncle).
He lived there very happily for nearly 20 years, basically as part of the family. My parents moved away from the area (to be near myself & children) but he would come and stay with them a couple of times a year and they'd visit.

Unfortunately due to early onset dementia he developed issues with the foster carer, which was very sad for all concerned.

He was moved to supported accommodation a few years ago. This is a couple, or three, houses which house adults with various disabilities and have a rota of carers. He seems very happy there but, again due to the dementia, is no longer happy coming to stay with my parents. This isn't an issue for him but was very upsetting for my mum over the last few times he came. They now visit a few times a year, and depending on how he feels will take him out for lunch. Mum also phones him regularly and has short chats.

Hi there, @Sanjii - we're just letting you know that we've moved your thread over to AIBU, as requested. We hope that helps.

As a carer I only encountered adults living in the community, so my view is biased. Some service users were employed, most not. I was always conscious of the vulnerability of adults living in the community as often finances were difficult and restricted and they lived in communities that were perhaps too busy, too transient for them to make trustworthy connections. Obviously there were a variety of people working with them in a professional capacity but all too often they would attract manipulative people, and untangling those connections was difficult where no family member was known to professionals to give a sort of benign oversight. BUT all too many people have unsavoury family members anyway. On a positive note though
Connections to organisations or clubs and friends formed from a young age often friends with their own disabilities seemed to be the strongest on going connection and greatest source of inspiration and support to follow a more independent life.

My son has lived in supported housing since his early 20s - he's now 38. He went to a residential college when he left his special school, then moved into supported living. It was a hard slog to get the funding for a college placement but I think it bridged the gap between living with us and moving out; his sister had been to university and moved on and I wanted that for him.

Hi OP my son is 25 now. He has severe learning difficulties and ASD. His behaviour became more challenging as he got older so from the age of 14 he went from his special needs school to a residential special needs school. He came home every other weekend and during the school holidays. Respite was then arranged for some of the time he was home. At 19 he left school and went into supported living accommodation. He initially went into a home where there were 5 other service users plus carers. He had some issues there and so moved into his second home where he is living now. He is the only service user there and he has two carers with him. He is quite happy now and settled. The carers take him out and about and family can visit him and take him out too. Normally the carers take him to some activity centres a few times a week where he could join in with other adults with special needs , plus carers and family, but these have closed down during the pandemic because they can't do social distancing. He is doing well though

I have a friend with a very autistic son of 28, sorry if that's the wrong terminology, but no one could mistake him for NT iyswim. He lives in a sheltered housing complex about an hour from here. He has his own small flat (bedsit really) and there is support on site. He has a job helping around the site and they lay on activities for the residents. She brings him home to her house every weekend, although he could stay there.

It depends how severe his autism is. I am an adult with ASD I live with my husband in a house I own and run my own company.

My friend from school lives with his mum but has also been to a boarding college specific for people with learning/developmental disabilities.

DHs cousin lives alone in a flat with an awful lot of various support.

Thank you all so much for replying. Sounds like supported living is pretty common and working for many. that is reassuring.

It depends how severe his autism is. I am an adult with ASD I live with my husband in a house I own and run my own company.

my DC is lower functioning with severe learning difficulties. He certainly won't get married or run his own business. He is still young but old enough so have a good idea what the trajectory might be like and independence or a job look extremely unlikely.

My daughters have some learning difficulties and one is a highly functioning autistic person. They are both 27 (twins) and both still live at home. One works and the other get disability benefits. I think they would now manage to live independently with some help and we are maybe looking at that sometime in the future. We have made our will so that it the money goes into a trust which 4 nominated people will manage for the good of our daughters. I learnt that trusts aren’t only for rich people! We also have power of attorney over their finances which we have occasionally needed to help them out when problems arose.

The CQC website is helpful in providing info about care home providers. Social services would be involved as they would fund it. The care service provider would meet with your son and assess him to ensure the care home is suitable for him. He would then have a transition period so he can get used to the home and the carers and any other service users.

Connexions are an agency who also get involved from the transition from school to adult living. There were transition meetings at my son's school attended by parents, school staff, social services and Connexions to determine what was the best path for my son and how to achieve this.

So don't worry, you won't be on your own with this. There is alot of support

Our dd is 26, has sld and is severely autistic, epileptic and displays challenging behaviour. She went to SN residential school from being 8 years of age as the special needs day schools couldn't cope with her but thankfully, residential school helped calm her behaviours tremendously over the years although she still has her moments.

She has lived in what was originally a residential home - rated "Outstanding" - but converted to Supported Living 2 years ago, for the past 7 years. She has a wonderful, spacious 1 bedroom/1 bathroom apt. with French doors leading out to a small private /garden. The complex where she lives is 25 mins drive from home and it is especially for young adults with learning difficulties. There are 16 apartments in the complex and our dd has a team of 10 carers who rotate shifts
between her and another service user. They provide lots of activities and, during normal times pre - Covid, arrange lots of trips out etc.

I appreciate placements such as this are like gold dust at present but are definitely on the increase. We can visit dd whenever we like - had a 16 week period when we couldn't visit due to Covid but no problem now so long as we follow all the rules and stay in the apartment - and we currently visit 4 times per week which she loves but wants to go back to her friends after 1.5 hours which is the signal for us to clear off.😂

Sounds as if something similar would be ideal for your DS. My best advice would be to start making enquiries early and definitely DON'T just accept where Adult Services suggest. They will always want you to accept where's cheapest and easiest for them IME.

As @Knittedfairies here - my son went to residential college after special school (had to fight for the funding) then home for a couple of months (our local authority said it was 'best young people lived with their parents' but it wasn't - he gained a huge amount from residential college and lost a lot of that from coming home rather than straight to supported living like all his friends at college). I fought (hard!) for him to go to supported living, and he's been there now for 5 years and is happy and doing well. And I can go out to work now!

Think hard about how you will cope as you get older - will you work? Will it be possible for your son be left at home while you work/go out etc?

My 7 year old is also severely autistic, learning disabilities, non verbal etc.
He goes to a special needs school that has a secondary on sight and linked to it and it’s also a residential setting. They can live at the setting from 11.
It’s also has a college.

I honestly don’t know what il do when the time comes. Makes me sad even thinking about it.

potter, it's scary, isn't it? DS is verbal but has the developmental age of a 3-4 year old (also speech and language wise)., he is 9 now. luckily not too many challenging behaviours. I love him dearly but esp with the lockdown and being with him 24/7 whilst working from home all week took me over the edge. I am pretty sure I would not want him being with us once he enters adulthood - he deserves to move on just as any other young person does and I won't be able to provide the care indefinitely. Might sound egoistic but I think I deserve to have my life back at some point - currently it is just a mix of working and caring. no break, no respite... im am suffocating a bit.

OP it's not egotistic - you need to have a life and so does your son. It's lovely to just visit my son and have a nice time, without doing the 24/7 care as well.

I'm a Shared Lives carer which means I support an adult with ASD who lives in my home with DH and my DCs. I have full training and am a professional carer. The lady that lives with me did not enjoy living in a residential setting, the staff changes were unsettling for her, as were the needs of the other residents. With us she enjoys a family environment, but because we are not her actual family the stresses and tensions of family dont really apply. Her family are really involved and we have good communication. I'd be happy to answer any questions anyone has about shared lives. I'm very passionate about it

never heard about the shared lives concept. I will read up on it. thank you.