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?

I'm really interested to hear how people have got this level of support (sorry for hijacking OP).

DS is 15, he goes to special school but we've had no other help whatsoever. Diagnoses which we've had to wait years and years for but nothing else because he doesn't meet the service thresholds but could not be supported in mainstream school because 'the gap is too wide' and he's so vulnerable. So we've become very self sufficient. In an ideal world he would get support but in all reality I don't think he will, at best he might get social housing but he's like a beacon to people who want to take advantage. He'd have people living with him and eating his food and worse within a week because he doesn't understand that people aren't always nice. He'd try and befriend kids because he still likes watching CBeebies, Disney and playing mine craft So he'd probably be lynched because people would think he's a paedophile. So the only thing I can think of is him staying with us in a semi independent arrangement but obviously there are big drawbacks to that.

My DS is 17 and has Down syndrome. My hope is that he’ll live in shared supported living with friends as I think he’d be lonely living by himself. My adult cousin who has learning difficulties lives at a Camphill community so that might be worth you looking at.

I'm really interested to hear how people have got this level of support (sorry for hijacking OP).

I think this is a good question esp as one hears of a lot of people caring for their learning disabled children until old age. Was this choice? Or the result of a let down?

In my experience, there is no help until shit hits fan and social services will do anything to withold support - but I have only experience of the children's 'services'.

Will we be expected to carry on caring as this is of cause loads cheaper or is it relatively easy and not a battle to move into supported living once the DC are adults?

We have been offered no help at all. I thought it was maybe as they are not as badly disabled as some on here and therefore would not qualify for supported living. They are still very naive and vulnerable though and not really capable of living independently though as I said are now maybe getting to the stage where they could with a bit of support. We may buy the bungalow next door when the old neighbour dies and they can move in there together but thats not really independent living.

The organisation I work for manages a range of supported accommodation for adults with learning disabilities. They range from people living with a lot of independence in self-contained flats, with staff on the premises to give them some support and deal with emergencies to homes for people with much higher needs and high staffing ratios 24/7.

Referral is usually via Adult Social Care, and there's quite a wait for places.

DS2 is currently going through puberty and any plans we may of had are narrowing quickly. It’s not the ASD but the severe learning difficulties. His world is closing all the time as his strength and build means he is no longer manoeuvrable. He requires 2:1 outside and is going through respite providers quickly and school are starting to make noises of not being able to cope. They do not want his immediate return in September and they are facing pressure from the local authority. Residential is now a question of when and it’s looking sooner rather than later. I also have to come to terms his life may be better suited to residential than a home environment. Support is much easier to gain when school becomes difficult. Support services seem to respond better when others cannot cope and believe them. DS has had overnight respite since 8 but the nights increased at the age of 11 and now up-to 44 nights a year. Personal budget was crap as I could never get anyone to take him on.

Referral is usually via Adult Social Care, and there's quite a wait for places.

what is 'quite a wait'? months? a year? 5 years? Longer?

Also, what happens when you have to work but the child is above school age and cannot be left unattended whilst they are still living at home?

No idea about that as ours can be left alone though I’ve had to leave work every now and then as they have got lost somewhere and rung me to go and get them (we have trackers on their phones as they get lost a lot) or managed to set fire to the microwave. I have an understanding boss so it’s been ok.

I’ve also had to have lots of time off for taking them to doctors/dentists/hospital (they can’t find places and can’t remember to go to the appointments) and attending appointments/tribunal hearings etc for getting their dla/pip/esa.

I'm single parent to ds 25 and dd almost 18 who both have autism. They both live at home. Realistically neither will be fully independent but I hope at some point in the future we will be able to access supported living for them. For now though we live together pretty happily.

We have a relative with autism and learning disabilities too, OP - like your DS she has a developmental age of about 4 (maybe 5 or 6 for some things) but she's now in her 40s. She lived with her parents until about 30, then when they started getting frail her dad put a lot of effort into getting her taken on by adult social services in supported living. It was important that social services took total control because she has no other responsible relatives in the UK ( we all live in different countries to her). I do know that social services were incredibly reluctant to act, but it was a wise move on his part because both parents became incapacitated a few years afterwards and it meant it was all a managed, controlled transition, so very much in her interest.
At first she lived in the main purpose-built facility, but she found that too loud (sensory issues) so asked to be transferred somewhere smaller. They took her request seriously - I've found them excellent at treating service users like adults who just need some extra help - and she's now in a shared house with 24-hour care. The organisation runs lots of fun activities (bowling, zoos, autism-friendly cinema, crafts) but everyone has their own room where they can do their own thing too. it's perfect for giving her some autonomy while also acknowledging that she will never be able to live by herself (she has no concept of household bills, for example. That kind of set-up might be ideal for your DS too, OP - I just hope the process of getting help has become a bit easier than 15-20 years ago.

All the advice I have had is if you want/need a residential setting is to begin the motions before 18. Working whilst supporting an adult with disabilities would require day setting establishments or carers and of course a very understanding employer.

My best friend's sister has intellectual delays, and other things, including quite severe epilepsy.

She moved into a sheltered accommodation flat when she was about 20. Her parents just didn't want to be still caring for her day to day as they got older. They figured it was in everyone's bests interests to get her out of the house, and settled somewhere, when parents were still around to support. Rather than it have to be after they died.

DS is 19 and autistic. He is theoretically high functioning which he is in some ways intellectually, but he is very disabled WRT life skills. I wouldn't trust him to remember to turn off the oven or hob, he never thinks to wash or change his clothes etc. If he lived alone without support he would be living in a pit, smelly, wearing dirty clothes for weeks, and would probably lose any job he might have plus I think he would live off cereal.

My current thoughts are to convert our basement into a small flatlet or buy a flat locally so he can live semi independently. He would need daily visits from us, at least at first. He may be able to work so if he does he can pay rent etc. Unfortunately I think his academic intelligence might put him outside of the remit of most supported housing etc. I do worry about what will happen when we die.

My DS is still at home, he’s 24, he needs some support, but not enough to qualify for any real assistance - so it’s living with us or not quite coping alone that are his options really.

He has an ASD diagnosis, a speech disorder, dyslexia and joint hyper mobility and muscle hypotonia mean his fine motor skills are very poor... but above average IQ and is almost independent but not quite... so...

Him living alone would be a bit like a 15 or 16 yr old living alone, yeah they’d manage, but not well.

DS2 is 18 and has ASD and a mild learning disability equating to severe learning difficulties. He’s still living at home and will until he’s finished college. He’s just about to start (his 3rd attempt!) a 2 year supported studies course at a local college to help him access employment through supported work experience after a years specialist intervention, as he wasn’t ready at 16 and it all went a bit pear shaped!

I will then apply for him to get his own accommodation in a supported living complex, hopefully he’ll have a little job by then so he has something to do. It’ll have to be local though as I’ll expect to pop in everyday and help him with stuff/check he’s OK and so he can come home when he wants. There are a few complexes in our area. I’m not holding out much hope though as it was hard enough trying to get support with his education let alone accommodation .

I was advised to apply for accommodation when he turned 16 but I was worried he might be offered something before he/we were ready and couldn’t turn it down so I might have shot myself in the foot and he’ll still be at home when he’s 30 but fingers crossed. He’s hasn’t got any real behavioural issues now he’s older thankfully apart from swearing at the PlayStation, complete lack of organisation and social anxiety so it’s more for his independent living skill for when DH and I kick the bucket that I’m bothered about.

@tabulahrasa sounds similar to mine though mine were born very prematurely and had some slight brain damage leading to no short term memory in both and Aspbergers in one of them. They are developmentally about a not very intelligent or and not streetwise 15 year old.

DS is very good with personal hygiene, wearing clean clothes, ironing, hoovering and loading/unloading the dishwasher. He can get about on his bike safely (I trust him on it more than his NT twin brother!) and in the last year has managed to get a local bus independently after a lot of support. He’d live on peanut butter sandwiches and apples though, has no care about time or being somewhere on time, has no concept of what money is worth or that spending it all on online games might not be a good thing, would prefer to wear his balaclava or Batman mask in public and can’t understand why people might be alarmed if he did so he still needs a lot of support and always will.

My DSis has very severe ASD and is in a residential care home with 8 women with similar care needs, she went aged 19 when her school stopped and she's now 27.

My parents felt very conflicted but it was the right decision imo. She has access to a big range of activities with people her own age and a better quality of life than my parents could provide, especially as they're now in their 60s.

My son is 20. He was dd at 7 with asd and adhd and odd. Life has been tough. Puberty was hell and I thought he'd be in prison before now because he was aggressive. BUT he got great GCSE results, distinction for btec and one A level. He doesn't have learning difficulties but he is still immature (think 14 in 20 year old body)
Despite this he's worked since he was 15. He passed his driving test at 17 and is now trying to pay off debt before moving out.
None of this is easy though. He makes terrible decisions and doesn't think of consequences. He self harms and has tried to end his life a fair few times. When things are good it's fine. When it's bad it's very dark. Support for adults is non existent and we went from monthly support through Cahms to absolutely nothing when he turned 18. That's when he bottomed out and we are now fighting to be heard again.

Support for adults is non existent

I really hope you manage to get some support. My DC has severe learning difficulties, GSCE or A-level are impossible. We are lucky if he will day one day manage to take the bus for short journeys. He would be completely unable to survive unsupported.

It's good to share experiences, I'm mindful that this is the OPs thread but I think it might be nice to carry on sharing (and maybe in the process raise awareness?)

My 18 year old has ASD and moderate learning disabilities. He's still at home, he goes to school still, in his last year as his special school goes up to age 19.

At his last annual review they talked about transition to adult services and that he'd get an Adult Social Worker, but then covid happened and he hasn't even t9 school since so I'm not sure what's going on!

He's going on to the local college next year to do life skills, and maybe something catering based as he likes cooking (and eating!)

Although he's quite self sufficient (I've made sure he can do all the same chores as his siblings) he's very vulnerable so can't be left at home alone or go out on his own. Currently I don't work because of this.

He wants to live on his own, so I will look into supported living at some point. It will be hard to let him go, he's such a lovely young man.

I am autistic myself so another thing that bothers me is all the phone calls, paperwork and meeting people it will involve. I'd like to just carry on as we are and not do these things!

My friend has a DD, aged 31, with Downes Syndrome who lives at home with her. She could actually live totally independently but they really enjoy spending time together so can't see the point.

My cousin with DS lived with her parents until my aunt died. She then became worried that her dad would die too. They discussed it and decided she would try supported living. Sadly she died in her early 30s but she did enjoy living semi-independently.

Different horses for different courses.