To ask for your advice re adult social services (DB, multiple SN)

[MumHouseDilemma]

This is fairly complex, and I am posting in AIBU for traffic. I am sure this situation is not uncommon.
Background: I am 15 years older than DB.
My Mum is married to my SD. We do not get on and have been NC for a number of years. This is the same for DS, who I mention briefly.

-My DB is 27, and has multiple complex needs. He has ASD, is mainly non verbal. He had (the equivalent of) and EHCP and at school and college was in a specialised placement. He has an adult social worker. He has a care plan (?) which was reviewed and updated last summer.

-Since he finished college, he has been at home with our DM. She is in her early 70s. She does not get respite and he does not attend a day centre or other day services for adults with additional needs.

-This is entirely because our DM is resistant to this. She does want him to go but is concerned that my DB will go 'batshit' because of the change in routine. He probably would, initially, but my view is needs must.
DM's physical and mental health are failing.

-She owns the house they live in outright. It is large and she cannot maintain it, and it's essentially falling to ruin. She has hoarding behaviours. However, she also owns it with my SD (my DB's father), who is in his 70s and is in a care home. DM and SD hate each other but neither will start divorce proceedings. They are married in name only, but she does visit him twice a week (I do not know why). Therefore, downsizing to a smaller property would be very difficult.

-She lives in a different city to me, around 60 miles away. I work FT, and cannot provide respite care and I am not equipped to do so. I also have a DS (sister), who is in a similar position to me.

-I recently tackled the topic of arrangements for DB's ongoing care if DM becomes unable to care for him (which is the case now, frankly) or if she were to die suddenly. She has a Will, but no arrangements have been made financially re DB. She explained me and another relative have been named as 'keeping an eye on him'. I don't know what that means and frankly, given I live some distance away and couldn't financially support myself if I moved closer, is useless.

What on earth would happen if she were to become unwell, and hospitalised or were to die suddenly? I assume my DB would need to go into emergency foster care. How would we pay for his care? We'd have to sell the house to do so but currently this would default to SD as a joint owner, and would be a bloody nightmare to sort. There is absolutely no way DS or I could give up our lives and careers to move into Mum's house to care for him. I assume this wouldn't be expected?

Does anyone have experience or advice?

TIA

He needs an assessment by adult social care. Day centres and group activities are not suitable for everyone but there are options of having an individual carer who can take him to places of his interest.

If she can no longer care for him or even didn't want to, it would become adult social care's responsibility and they would assess only him for any financial contribution he would need to make.

Thanks - he has an assessment last year but I definitely think DM downplayed the effect being his carer had on her. I’m more concerned about his ongoing care. He can’t live independently and would need either a FT carer or placement.

I think I need to contact adult social care and explain this. If they’d even discuss it with me.

Get in touch with adult social care. It sounds like he may need a residential placement but they will advise.

Sounds like he needs a residential placement... This will take time .

You should start the ball rolling asap, social worker care co-ordinator etc

Surely your mum will want to know that he is safe and settled in a good place before she gets too old to care for him and he is just placed wherever there is a spare room?.

Yes he will probably hate the move but long term it is absolutely the best thing for him. My brother is in full time residential care he considers the house his home.
Take the time to research and find a good home before that option is taken. Away

Thank you, I will. I’m concerned that they wouldn’t discuss anything with me as I’m not my DBs NOK. Mum has POA but I don’t.
he would def need a residential placement. He can’t support or look after himself. It would be Mum or Carers. On the carer front, I’m concerned if there wasn’t availability due to sickness or whatever one day, he’d be alone and vulnerable (it takes me four hours to get to hers so useless in terms of assisting).

Thank you for this. Mum is extremely head in the sand. She does know he’d be better off in a residential placement for all the reasons you’d expect but won’t really tackle it, on the basis that he wouldn’t like it. I’ve pointed out he wouldn’t like emergency foster care either…

You or your sister would not be expected to care for him if your mother died or went in hospital etc.

This situation is quite common.

Generally the parents keep their heads in the sand until they literally have no other option.

When your mum isn't able to look after him anymore social services will get involved.

I presume he doesn't have any assets (cash or investments etc) and you've stayed the house doesn't belong to him.

In these circumstances the state will pay for his care although if he gets benefits (pip, esa, etc) they may take some money out of that.

You will not be expected to pay for his care.

Oh, and anything she writes in her will about you "keeping an eye on him" is irrelevant.

They may not be able to share any information with you but you can call and express any concerns that you have. This should be recorded on his file and social workers should take this into account in further assessments.

It may also be worth getting in touch with social care providers local to your mum and DB. You can get an idea of who may be best equipped to provide his care, should that be necessary and start to open a dialog with those people.

You won't be expected to provide care directly to DB, should anything happen to your mum. However, it would be beneficial to him if you were involved in any bridging work as you say he is mostly non-verbal and likely to be distressed by a change in routine.

Or you can do nothing, lots of people decide that they can't or don't want to get involved for many reasons. If you feel that you won't ev able to be involved at all it would be best to inform your mum, social worker and the other named relative of this so that everyone is aware.

@MumHouseDilemma
just to be clear your brother is an adult and foster care is only up to age 18. Now he is past that age he would most likely need residential care . There is a scheme called Shared Lives which is basically like foster care for adults but it is normally for people at the less extreme end of the scale so.it might be hard to find suitable carers based on what you have shared here.
I am actually both a foster carer and shared lives carer myself so if you have any questions fire away.
As others have said you need to get the ball rolling ASAP by contacting adult services and looking at all.options .I think.you said your mum has POA ? You will not have any right to make decisions if your mum dies because it gets messy post 18. You would be best to get POA yourself if you can and your brother can consent. if he cannot consent then you will need a deputyship from the court of protection otherwise if the worst happens there won't be anyone who can make decisions on your brothers behalf. That can take up to 12 months to do so I would try to put plans in place as soon as possible personally.

You wouldn’t sell the house to pay for his care, as the house doesn’t belong to him.

He needs to be helped into Independant Living, whether that is shared, or a flat, or whatever, he needs to be able to live without mum being there all the time.

Try to get the name of his SW and have a chat with them, this scenario isn’t unique

If he needs social care support he will pay for it (or contribute to it) from his own means (benefits) - it won’t be the parents or families responsibility to pay.
if he is named as beneficiary in any will, it will ideally be worded to place in trust for his benefit. Mencap can advise on this.
I understand the reluctance to changing his routine but it really is best to make a plan to get him used to some care outside the home or he could have a huge shock coming.

maybe you could set up a family meeting to discuss it and then arrange to be there for his next social care assessment.

There is nothing you can do about this situation while your mother is deemed to have capacity over her decisions.

Unfortunately, these kinds of set-ups often have to get to crisis point before anything is done. That is when adult social services will step in.

You are entirely powerless, and my advice would be to step away and try to emotionally detach from the whole sorry mess.

I learned this the hard way. Years of stress and all for nothing. Never again.

Your dm needs to understand that the trauma your db will experience if she dies suddenly and with nothing in place will be huge. It is far better for him to transition to supported living with her still being able to visit and help him. She had to take a long term view for his health and happiness and this might mean hard conversations now.

Thanks all for your responses. They are so helpful. I will share them with DS.

In terms of stepping away, the only reason I won't is because everything would land on my DS. We have both been through a lot and I love her and this is the best way I can support her. She won't walk away because of FOG (we have a very difficult family set up, as I am sure has come through in my OP).

DB does not receive any benefits, even though he is entitled to them. I have suggested to DM that we apply. I will leave you all to guess how that went.

We are part of a particular religion where there are organisations who provide adult residential care homes. Our DM knows of them and has mentioned a few and one of them is known to my DM and DB as he used to utilise their day-services when he was in a college placement. So that helps somewhat but I will also make enquiries about other settings local to them.

I am also going to tell (not suggest) to DM that we should apply to the court for me to also have POA. This would seem sensible from all points of view.

This is a really good place to start. Do you have any religion specific organisations or charities as they likely have social worker?

We do. One of their main homes and advice centres is well known to my DM (and me, as I used to do some work for them before I changed careers, not related to care, I was on the admin side). That part is actually the easy bit! I might make contact with them today on an anonymous basis.