Disabled brothers future

[Namechangedforthisssss]

I have an older brother who is severely schizophrenic with moderate LDs. He’s in his late 40s and is still living at home with our elderly parents. The situation unfortunately is unsustainable. He has completely fallen through the net with regards to any help or support etc. DM recently admitted that his money is running out (he doesn’t claim any benefits that I’m aware of.) Unfortunately my parents have their heads in the sand with what will happen to him when they are gone. All they say is that I will “have a lot to sort out” I have offered to get them a carers assessment/social worker/to apply for PIP but they always say that my brother would have to suggest that himself. Their health is now failing and DB is in a very bad way. WIBU to call social services? I don’t think they would forgive me if I did.

As mentioned by @BrassOlive above this looks like a great resource, I notice they give advice on life planning for when parents are no longer around:
https://www.sibs.org.uk/about-sibs/sibs-services/
(it opens talking about young siblings but if you scroll down it goes onto adult siblings of adults).

If he's a vulnerable adult they can help

It's alright for them to say you can sort it after they've gone!

I would want it sorted out now and I would also be very clear that he's not your responsibility. You can still have a relationship with him of course but he isn't living with you.

My bf has a relative with LDs and we've tried for years to get his parents to move things along to no avail.

This^

my father and mother refuse to sort any care or arrangement for my mother (disabled) in case my father (her career) passes or becomes too unwell to care for her. I’ve tried printing many times but they are taking the head in the sand route. I’ve just been clear what my limits will be should there be an emergency. And that is I will take one week off work and care for one week and then soxial care will have to arrange care after that. The consequences are on them. I’ve done too much previously and learnt that to really can’t help people who won’t help themselves.

Also, the reality is, it won't be after they've gone, unless a car crash or tsunami takes them. It will become a crisis as they start to fail.

We had a similar situation with my dad/brother (but addiction/mh issues in his case) and the wheels came off as my dad's dementia advanced. Still sorting out the mess now but it wasn't fun for anyone and least of a my brother.

Simple, just refuse to take on caring responsibilities and ask SS what they can offer. Supported living might be the making of him

It really isn't simple. Not if she cares about what happens to him. Social services will offer nothing until they have to and maybe not even then. They may help with planning if her parents/brother are willing to engage (and they may be despite their protestations to the contrary, so it's worth a try).

@Tacotortoise not true at all. A lot of our work is preventative, planning and contingencies.

So @RobertJohnsonsShoes how would you prevent or plan for this gentleman if neither the parents or he will engage with you? You're not even entitled to his medical information unless he (or his guardians if he cant consent) say so, or unless he appears to be in danger/neglected now.

That's appalling and neglectful that they never claimed pip and UC for him they should be ashamed of themselves.

Thanks for all your replies, just going through them all now as I’ve just finished work x

I think he used to get something- possibly job seekers but they keep saying his money is running out and are vague when I ask what he actually receives now

Yes I’ve always thought this and that supported living would open up his life and hopefully he would be encouraged to participate in activities/make friends etc

Yes definitely they have their heads in the sand with regards to what will happen to him. It won’t be an option for me to be his carer as I’m already a carer for my youngest child and have other children too.

I think you need to sit them down and have a serious conversation about it. There is no point contacting social services right now as you are not in charge of his care. It sounds like this would just put everyone’s backs up.
Tell them you understand they want you to take responsibility for him once they can’t. Say you need to know what the current arrangements are in terms of finances. Then try to gently suggest things that might help ie benefits he is entitled to.
If they are resistant then you may have to wait till it is your responsibility.

@Tacotortoise it depends on a whole range of circumstances. MCA, safeguarding, multi agency working etc Gaining someone's trust doesn't happen in one visit. And yes you are right, if someone does not wish to engage and has the capacity to decide this then we can't 'force' people. Doesn't mean we don't try. By making comments of social care not likely to do anything, you put people off contacting us, mistakenly thinking we won't be able to do anything. In my career there's only ever been one person/family who totally disengaged. Many people are confused, scared or misinformed about what we do.

People's medical records can be accessed by social services with out consent in many circumstances.

I would start by making it very very clear that you will not be taking responsilibity for him when they no longer can.

They believe they can stick their heads in the sand because they have decided you will do this, for them to change their minds on this they have to understand you won't.

I told my mum repeatedly that when she died I would not be responsible for my brother. I said I may emigrate or die before him. She would ignore me or say weakly 'family will look after him'. I was his family. No I wouldn't look after him.

When she was dying I took to emailing social services daily with an update of her condition so there was an email trail when she died. The day after she died a social worker came to her home and we started the process of getting my brother cared for. I made it crystal clear I would not provide any care at all. He's happy and settled now and I have a good sister/brother relationship with him.

I’m sorry, I’ve only read OP’s posts properly so this may have been already said.

I know your parents have the best of intentions for your brother but I feel like they are being unknowingly unfair to him.
If they keep him with them until they pass away, that means he will have to cope with losing his parents at the same time as learning to live elsewhere - but, if they help him into supported accommodation now, he will be settled before he loses them and will have more people around him to support him through his grief.
(I hope this makes sense, not sure how to word it in a less garbled way.)

It's alright for them to say you can sort it after they've gone!

Yes, this is outrageous. You may say this about a house or other assets, where it takes over your life for a few months to deal with it all and dispose of as necessary, but you can then draw a line under it after that. He is a human - and not even a particularly old one - and they're effectively committing your life until your old age to looking after him.

In fact, he's the same generation as you, so he could even outlive you. What would happen then? Would your children (if you have any) then be expected to take over responsibility for him?!

They might think they're being kind, but they really are not helping anybody at all. In an 'ideal' world, you will have children who are fit, healthy and able-bodied, with no vulnerabilities or challenges; who will become independent adults many, many years before your time comes when you have to say Goodbye. However, if you have a child who will never be able to live independently, it is your basic duty to make good, solid, sustainable provision long in advance of your own old age and death.

I'm in a very similar situation with my younger brother who is on the autism spectrum with learning difficulties. Although my parents have never explicitly said I will "have a lot to sort out", by not helping him claim the benefits he is entitled to and by not helping him into supported living, that is what I have to infer.

5 years ago, having had the conversation with my mother many times, I gave up and went non-contact to see if that would get the point across that I am not the default option. It wasn't the only factor that influenced that decision, because my mother is awful in many ways, but it was a major one. I didn't feel I could contact social services, because my brother, who has little insight into the future, is content with his circumstances. My mother still sends Christmas and Birthday cards with all 3 names on, which I check to see if anyone has died, then immediately recycle. Obviously stepping away has made absolutely no difference whatsoever.

I do indeed have a lot to sort out, because I am on the deeds of my parents' house - some sort of trust arrangement I signed in my early 20's without understanding what I was doing. I'll be looking this year to get myself off them, if possible. I don't want my parents' assets. My brother can have the lot as far as I'm concerned. I just want them to get their heads out of the sand and organise his ongoing care.

100% speak with your parents and brother about having a Care Act Assessment through social services. Ideally you, well him- and your parents (obviously) want to have as many options available as possible. Having worked as a social worker in crisis situations where older parents have died or been taken to hospital in an emergency situation means limited options which can result in more distress to the vulnerable adult. If they can understand the benefits maybe they will be more agreeable to getting organised now …. Very difficult scenario, good luck with it all x