Disabled DS is a nightmare. What can we do?

[GurlWithACurl]

DS is in his 30s and still lives with us. We are pensioners and both disabled ourselves in various ways. He has ASD, OCD and learning disabilities, although he can manage quite well day to day. On most days he goes out, either with friends or on his own. But when he stays at home he is very difficult. He can be very kind and helpful, particularly with me, but on many days he becomes angry and really nasty and abusive towards us. Today has been a nightmare with his abuse. He is very rarely physically abusive, but says the most hurtful and horrible things to us.

There is no way that he could live independently of us and so we continue to have him with us. I don’t know why I am posting, really, as nothing can be done. I just wish that the sweet, loving and kind version of him could overcome this cruel version. I feel in despair and so very sad.

Just spoke to dh, financially if he has enough savings that it affects payment he could potentially pay independently. This will eat up his savings and then he could qualify for a paid place. Social services don't want to refer people to supported living as it costs them. What benefits does he get? Also, get physical evidence of any harm he causes. This can help with ss.

Contact adult social care and request an assessment. Supported living can be offered or even shared Lives which is similar to an adult Forster placement. But it can be a good first step for an adult with Learning disability to move out of home. You would be doing the kindest thing for him and developing his skills to live more independently and prepare for a time when you are no longer here.

@GurlWithACurl
I posted earlier and agree with the importance of supported living. However following all the other posts saying similar I really think it is important to remember that these arrangements are really hard to achieve. Social Services will want to support you all in his own home first (it is less expensive). I would also suggest the a YP who can happily go out on his own with his friends might be considered low priority. That doesn't mean to say you don't start making plans and actively start working with both health and SS.

You've got to face it I'm afraid.

Social services are there for advice not just funding, definitely call them and ask for a full care assessment with a view to him leaving the family home. The only issue you have is that you say he’s capable of going out and about alone which I suspect will mean he will not be eligible for supported living placement but instead it will be a case of finding a suitable rental and carers will be able to support him for a set amount per week - a young lady I know gets 4 hours per week (2x2 hours) to help her with managing her home, her tenancy and her shopping. A full time care placement could be funded by his savings or you but the council will not fund if they believe he has capacity to live in his own place.

I have one who is now an adult and has a diagnosis of AuDHD so I can understand the tension and upset that some days bring and the utter unpredictability of when that upset might arise.

I know you’ve had some upheaval recently but I don’t think you’re doing yourself, your DH or your DS any favours in not seeking some kind of help now, even if it’s only to request that Carer’s Needs Assessment today. There is often a waiting list of a few months, depending on where you live, so the sooner you request one, the sooner you’ll be taking steps towards getting support.

I also understand that nobody wants to face their own mortality either but as others have said, it’s much kinder to sort this now rather than wait until there’s a crisis because you’re too ill to look after him or you’re simply not here and then he had grief to cope with along with a move. If you do it now, you’re able to advocate for him to get a solution that suits him.

I also know that having savings will complicate things and that he may not welcome the prospect of having to spend his own savings but that too is part of normal adult life. He cat expect you to keep him forever and he may not like the thought of spending his own money but you need to start to introduce the concept to him.

@mamagogo1i think your funding advice is wrong. None of the funding would fall to the OP. Her ds is an adult in his own right so any funding decisions are based solely on his income. Whether he lived in supported with carers or residential he would most likely lose all his benefits except approx £30 per week pocket money. It’s a complex issue so all the options and funding would need to be explored.

It sounds like its time for supported living.

*can’t

You need to face it. You will just make it a bigger shock and he will be in a stressed and grieving and could potentially fall through the cracks if he isn’t known to social service and doesn’t have anyone fighting his corner.

do it now while you can have input on where he ends up, if he is near to family and that the place meets his needs.

I worked with disabled adults for 8 years. Most of them lived in supported living. Call social services for adults, and explain he needs to be more independent. You'll need to settle him in supported living before you both pass on. Otherwise he'll end up homeless not knowing what to do e.g. paying bills etc.

I know we need to settle him somewhere before we die, but I can’t face that yet.

Is it going to be easier to face in future? This story is about you not letting go emotionally, yet you have some control over your attitudes that lead to your emotions, you're not a victim of emotions, most emotions arise from beliefs, we can change our beliefs. In future he could make a more abrupt transition and you would only find it easier to "face" because you were overwhelmed by your own health or other personal crisis issues and too exhausted to have those strong emotions about him learning to live not under your roof. Is that really how you want to make this transition happen? Will he make a better transition if it happens suddenly and he feels utterly forced and rushed?

Social Services .... said they couldn’t help us as he had a lot of savings.

Why shouldn't his lot of savings be used to help set him up in life, just the same as if he had no disability.

Sorry, I know that I sound like a unsympathetic cow. You gotta let go of some unhelpful beliefs though if you want the situation to improve. Changing beliefs is hard, I know.

I think you also have to ask yourself what you gain from not sorting this out now.

What’s the benefit of your decision to defer sorting out now?

The status quo will continue but it doesn’t sound as though any of you are happy.

I think asking what’s the benefit to you is a good thing to ask yourself if you’re faced with sorting something out. Quite often the benefit of getting it started are very obvious once you have a think about things.

Thank you all for posting, even if some of you have been quite harsh! DS is away from home for a few days, so I opened the subject with DH today. We have decided to wait a few weeks until we are more settled in our new home. There are loads of things we need to do to sort the house out. Then we will revisit the subject, first between us two and then involve his brother (who is very intelligent and sensible). After that, we will start to address it all with DS and probably Social Services to work out the way forward that will be best for everyone. DS is at the forefront of my thoughts and I want to find a way to secure his future happiness and safety.