What happens to vulnerable young adults when their parents are no longer able to care for them

[BigSandyBalls2015]

DB is divorced, he has two DSs, early 20s, one of whom is autistic and is unable to live independently. He lives with his DM, who has just been diagnosed with terminal cancer.

For various reasons DB is unable to have his son. What will happen to him? This situation must arise quite often, usually with older parents when they become too frail to continue looking after their adult children.

The older son also still lives with his DM and brother - he struggles a bit but works part time and I think he could live independently, but no idea how he would afford to. Their house is rented.

Just wondered if anyone had any advice on here.

Do they have a social worker?

The need to look into supported living/residential care for him. Probably best to get started as soon as possible so mum can be involved in the decision making and ideally in helping him settle if she is well enough.

No social worker as far as I'm aware. The youngest son attended a special needs school until he was 18 and since leaving he's had no support.

Good idea about involving mum. It's such a horrid sad situation.

If in the UK, make contact with Adult services in the local authority and explain the situation, they will advise on next steps and or signpost to local services.

Sorry, I have to ask why the dad is unable to help in any way.

Thanks. Will look into that.

DB works long hours and DN can't be left alone, plus he only lives in a one bed place.

Either a family member steps in or the person goes into care. This is why parents of kids with additional needs should encourage them to be as independent as possible because the parent won’t always be around.

I don’t know any mums who get to say “ oh I can’t look after my kids because I work long hours “. Your DB could turn the living room into his bedroom and give his son the one bedroom .

How has he been managing for the 50% of the time his son stays with him since the divorce ?

Does he get all the benefits he's entitled to? That should be either Disability Living Allowance (the old disability benefit) or Personal Independence Payment (the new disability benefit), depending on exactly how old he is and when the award was made. On top of that he should be eligible for Employment and Support Allowance (the sickness benefit, but it also covers the living costs of disabled people) and Housing Benefit or the sickness and housing components of Universal Credit, depending on where he is in the country. Together these benefits provide enough to live on (at the minimum between £600 and £800 month, more if the disability is more severe).
The real question is whether he can manage this money and the other aspects of living by himself. If not, then there needs to be contact with adult social services, who will assess him and see what help he needs. There is support available from having a regular support worker visiting him once a week to check he's ok and complete things he finds hard, right up to full blown supported living. Money is handled slightly differently in these situations (especially if he struggles to manage his own in a legal sense) but, in general, his needs should be covered even if he only has benefit income.

Your brother needs to find a way to support his children. Could he firstly start budgeting and helping the son who works so he could ultimately get his own place? He really needs to find a way to support his son with autism, could he arrange a meeting with social services (he can refer his son himself) to see what support he may get? They'll need to be involved anyway if he'll need long term care.

Has your brother discussed this with his ex?

Your brother needs to step up. I agree with Kr1stina. He doesn't have an excuse, it's his child.

The best thing your brother can do is get his ds a supported living placement with a good care package from social services. He would use his benefits to help pay for his living expenses and his rent. He needs to check that he us getting pip and at what level. He should also be claiming esa I think. He needs to sort this now so that the ds can move and get settled before his mum is very ill. It will be much more traumatic for him to have to move in an emergency scenario. Your db will also need to step up to support more if he is in supported living. Moving into a two bed flat so your ds can stay sometimes would be a good start as losing his mum is obviously going to be v hard.

I can see it’s tricky. I guess they are on low incomes and just scraping by (excuse me if I’m wrong). You say the older son works part time but struggles. Do you mean he also needs care? I had heard that all help goes out the window once children reach a certain age which never seems to make sense. I think as someone already suggested it would be best to look into supported living. There are lots of charities online that offer advice. I wonder if the dad could manage them staying with him sometimes or if the son who works part time could live with dad and the other son could go into supported housing with visits Home every week. Is he able to claim any money to help with having a carer?

I think DB needs to step up. Whatever happened, the boys mum managed to look after him with all the ups and downs that come with it.
To just palm him of into adult care would be really sad. There are many solutions inbetween. Just contact adult social services, and explore the options. But be prepared that DB will have to chip in.

My DP works in supported living for 18-24 years olds with LD and autism. It’s a huge business with ‘homes’ (they don’t call them homes though, not pc) opening up weekly all over the country. You only need to look on job sites and they are always looking for support workers.

‘This is why parents of kids with additional needs should encourage them to be as independent as possible because the parent won’t always be around.’

That is a really idiotic comment, Sputnik Bear. Certainly isn’t ‘why’ parents need to encourage independence. Maybe one reason, yes. But many, many people with additional needs will never achieve any independence of the sort that would enable independent living and it has nothing to do with how much their parents, or anyone else, has ‘encouraged’ them.

A very sad situation OP and not an uncommon one.

DB needs to sort this out, not you. It's very honourable of you to be asking, but that's yet another opportunity that he had to take responsibility but he's enabled to be hopeless by women around him.

He needs to look into benefits, council housing, getting a different job etc etc.

His sons life is about to change beyond recognition.

It's not fair that he expects his to stay the same.

I think we’re all makin assumptions about the dad. Suggesting he go and rent a 2 bed flat is possibly unrealistic if he is already just manage to afford a 1 bed. It could be that he is in a one bed because he is giving money to the mum and children. Could be any number of reasons.

I would get social services on the ball now with a suggestion for supported housing.

I agree with cansu's advice. Db does need to step up but an adult moving into supported living isn't palming off.

So not only will lose their dm the home they live in but put into care! Surely the needs of you’re child come first.

Often the needs of an adult with severe sn are best met in supported living. Parents cannot look after their adult child forever and it is generally considered better to make the move as fairly young adults. An older adult moving out of the home can find it far more traumatic.

Yes they then lose the home they have grown up in as well as their mum. There’s a video on itv atm of a terminally ill mum who wants her severely disabled son to stay in their family home with his routine and friends but they can’t get 24 hour care. Sadly it’s all costs these days.

Your brother and the mum need to contact adult social services ASAP and get the ball rolling to find him somewhere to live so you have time and start the funding battle before she passes away. I agree with others that your brother will have to step up but in the sense he is going to have to advocate for his son (might be useful to look up disability advocates in your area too), unfortunetly there will be lots of meetings, lots of paperwork and likely lots of fighting to get his son what he truly needs rather than what is cheapest

I agree with @Sleepyblueocean - parents can’t look after their adult child forever and it’s best for them to support their child in achieving as much independence as possible. I realise that people with severe needs will never achieve full independence but they should be encouraged to achieve as much as possible given their specific needs. They should certainly be encouraged to develop some sort of support network outside of the family. It’s not a good idea to wait until the death of the parent to get them into permanent accommodation, as its devastating to deal with bereavement and moving home at the same time.

Let’s say the father (probably same age as the mother) takes over caring for the adult child. The father won’t live forever. What happens when he dies? The disabled person can end up being passed from pillar to post and still end up in care. So I’d say it’s better to set up a supported living situation early on to avoid repeated upheaval.

Clearly your DB will have to change his life, wont he? The same as he would have to if something happened directly to him.
It sort of has, anyhow.
He will need to move, and become their carer. He will likely need help, so it's best he gets started now.

Actually I don’t think the DB has to do anything. Morally of course he should step up to support his son. But legally he can just say “nope, not interested” and there’s nothing anyone can do. He can’t be forced to care for his son and social services would have to step in.