My 19 year old son is currently in residential care. The care is classed as 'supported living' for individuals who have mental health problems. He has been at the home for about a year.
This wee I was told that the managers of the home did not think the placement was suitable for him. They feel he needs more specialised care. Currently he has meltdowns, self harms and dresses inappropriately for the weather. Things came to a head a bit last week when he got a bit upset and rode off dangerously on his bike.
My son is a good deal younger than the other residents in the home, and his profile is a little different. He needs prompting and he loves to talk, but he also finds the group work that forms the core or the therapy in the home, difficult to manage. He has a diagnosis of Asperger syndrome and is being assessed for psychosis, but his assessment is inconclusive.
The problem is, he rejects anything to do with autism and I am afraid that he will reject any alternative provision on the basis that it is too 'specialised'. He cannot come home due to problems I have mentioned on previous posts and he cannot live independently.
I just feel a bit stuck. Has anyone any ideas?
Is there a possibility of him having a care worker or someone who can visit him daily / a few times a week, to work with him? I've heard that PIP can be used to pay for private carers but I'm not sure how all of that works - anyone ?? A carer could help with prompting re. the activities he finds difficult and also advocate for him on the days when group activities become too much for him.
Does your son have a case worker or someone who worked on his behalf during his application for supported accommodation? If so, this person should have knowledge of his Asperger's diagnosis and it may be worth involving them again in trying to reach a compromise with the home's staff re. group work / therapy which would seem counter-intuitive to your son's diagnosis. Not that your son CAN'T take part in group work at all, of course, but for there to be some leeway, taking into account that there will be times he finds this more difficult to do than others. Perhaps an agreement that he need only take part in some, rather than all, of these activities?
Thank you for the reply. I also feel that it would be better for everyone if my son had additional support in the accommodation that he already has. It was incredibly difficult to find any accommodation for him and, despite his problems, my son has made one or two friends at his home and gets on well with the staff. he also is tentatively starting voluntary work and college in the local area.
However, the home say it is 'against their ethos' and their 'open door policy' to provide the high level of support that my son needs. They also stress that he has taken some serious risks.
I feel the home are wrong to take this stance, but I also feel a little impotent.
If your son doesn't already have contact with a support worker it may be worth contacting your local authority to request one for him, someone to advocate on his (and your) behalf with the staff at the home and who will be in a position to ensure that the staff are meeting your son's needs and treating him fairly. A support worker should also be in a position to arrange some (private or local authority) carer arrangement for your son which would be independent of the home's staff and in no way "against their ethos", as they're saying.
You shouldn't have to do this on your own, the local authority social care team are there for just this purpose and have experience in all of these areas. As an independent young adult, your son has every right to access their services. If you have concerns about contacting them directly, your local CAB should be able to advocate on your's and your son's behalf.
Thank you, your insight is invaluable at the moment, especially because I am feeling a little emotional about the situation.
My son had an advocate who helped him raise a complaint about Children's Social Care two years ago. She was a very pro-active person and my son liked her. She is someone who I would consider contacting. However, my son does not really know that there are plans for him to leave.
That is to say, he phoned my two weeks ago in tears and told me that one of the managers had told him that she wondered whether the home was 'the right place' for him, but this was after my son had gone off on his bicycle and ridden it dangerously down a main road. I spoke to the manager and she told me, then, that there was nothing to worry about. The manager and her husband (also a manager) attended an EHCP meeting with my husband and me just over a week ago and it emerged that the care group that runs the home were being paid to provide 1:1 support for my son at college. So, their 'ethos' of independence does appear to be flexible.
When the manager spoke to me on Monday, he spoke outside my son's presence and the meeting with the social worker on Tuesday occurred without my son being present. The social worker (who I do not know) has been asked to look for alternative accommodation for my son.
Meanwhile, the animal charity where my son volunteers have arranged for him to have a mentor and regular work there and college is planning a part time course with qualifications to begin in September. There is a tremendous shortage of accommodation in the city where my son lives.
I just do not understand why it is so hard to give my son some extra support and just put in a few boundaries to keep him safe. I also feel a bit trapped because my son does not know what is going on.
I think it would be an extremely good idea to contact your son's previous advocate! She sounds as if she is the ideal person to represent your concerns, especially as your son already knows her and got on well with her in the past. Please do contact her at the earliest opportunity because the sooner she is involved, the sooner your concerns can be listened to. As someone who helped in the past, she sounds as if she would be able to help you to put your son's mind at rest.
If the care group running the home are being paid to provide 1:1 support, but not actually providing this, you are within your rights to complain to the Care Commission. The advocate you spoke of could help with either this complaint process, or with ensuring that the home staff do in fact provide he services they are being paid for and, as such, are legally bound to provide. (Actually, the social worker should have already forced that issue!)
You say that the social worker was asked to look for alternative accommodation for your son, was this at the EHCP meeting? You have a right to challenge any of the measures set out in your son's EHCP, you don't have to accept the 'ruling' of that plan. You have (I think) about two-weeks to challenge this so the sooner the better!
As your son is a young person, under 25, you also have a right to make appointments with your son's social worker. S/he should actually have met with you already and I'm surprised to hear that you haven't had this opportunity. Perhaps you could make an appointment with the social worker and express some of these concerns to her / him too? It might be useful to ask if his / her manager could attend too ; )
Once again, thank you for this really helpful advice.
I wrote in a bit of a rush yesterday, so I think one or two points might not have been made clearly. I am sorry for this, However, my son attends college for half a day a week. The home is paid to provide 1:1 support for him when he is at college. This is part of his EHCP. 1:1 support is not provided at any other time. The meeting with the social worker took place at the home with just the managers and the social worker present. I did not even know he had a social worker who was actively involved.
I will contact the advocate. I was trawling through old e-mails yesterday and I came across a draft letter that the advocate sent (in edited form) as part of a complaint. The letter stated that my son had been refused accommodation by two providers and that his present home had conducted a robust risk assessment and could meet his needs. There was a small dispute over funding (e.g. whether health or social care paid), but this was quickly resolved.
If the risk assessment was carried out, do I have a right to see it? It seems strange that the home would say his needs could be met and then, a year later, state they cannot. My son's behaviour has not changed.
I think you have a right to see, and be much more involved in, everything relating to your son. These rights may not necessarily be offered to you at each step but if you were to request them (just as any advocate would) they cannot refuse to let you see them. Ask for your own copies of these documents, not simply to read their copies.
You may find that the managers have stated that your son's behaviour has changed (in order to justify their actions) but you, an advocate, or a GP can contest this and ask for proof of their claims. The EHCP does need to be challenged within a (2-week?) short time so the sooner you and / or an advocate can start this process the better - before things move to the implementation stage!