Son (19) has to leave supported living

For issues specific to autism / Asperger Syndrome.
Hello,

My eldest son (19) has Asperger syndrome. Last year, just after his 18th birthday, he went into a residential home for individuals who are recovering from mental illness. The accommodation is classed as 'supported living' and about six people live in the house which is staffed by mental health professionals 24 hours a day.

Yesterday I called in to see him. One of the managers asked to speak to me privately and told me that they did not think the home was appropriate for my son and they were not really meeting his needs. The manager added that my son's real problems were due to his autism and he needed specific help with those issues. However, my son rejects his diagnosis and has a violent antipathy towards anything to do with autism, so the chances of him agreeing to go somewhere that is more specialised are slim.

There have been child protection issues at home which involved aspects of the relationship between my son and his younger brother (now 17). My son does not wish to return home and my younger son is progressing very well (attending a course, learning to drive and becoming much less challenging in his behaviour). For all these reasons, I could not agree to my eldest son coming home (although it breaks my heart to say that).

I do not have parental responsibility for my 19 year old, but I am frightened that he will be asked to leave his present accommodation and little thought will have been given to where he goes, especially if he refuses any specialised care. I do not know what to do, but I cannot simply sit back and watch as another disaster unfolds.

Has anyone any advice?
Write by Recorded Delivery to Social Services, with a brief explanation of why they want to move him. Ask for an URGENT reassessment of his needs, so he can stay where he is with specialist support until something more permanent is arranged.
Hello,

Thank you for replying so quickly. I have phoned the manager of the home. He told me that the idea of specialised support had been considered but it was against the 'ethos' of the home. He said the home was there to facilitate individuals into independent living and if my son had additional support, it would single him out. He also said, the open-door policy of the home placed my son at risk (he had gone off on his bike in a rage and ridden through red lights, for example).

The manager also told me that my son had visited one of their more supported homes and he had 'screamed and howled' and refused to go there again. Then I was informed that the manager had met with a social worker this morning, informally, and they were looking for a more appropriate placement.

My son has been undergoing an assessment from the Early Intervention Psychosis Team for the past six months, but, according to the manager, the team want another six months to complete the assessment. There is, apparently, no interim report available.

I have some questions to ask now and wonder if these are appropriate. Would I be out of place to ask why, when my son had been arrested in the past and sectioned and was known to self harm and abscond from places, a more rigorous risk assessment was not put in place?

Why, after six months of assessment, are there no findings from the EIT Psychosis team? Surely we need a report to help my son to make an informed decision about where to live?

Why has it taken a year for the home to realise that they cannot meet my son's needs?

Have I any say at all in what happens to my son?
I agree with all your questions, they must surely have an idea by now.
As to your role, you are the nearest relative and know your son better than anyone else.
Hello,

I spoke to one of the managers again yesterday. I wanted an update on the situation. The manager told me that he had heard nothing from the social worker who was tasked with looking for alternative accommodation. I asked again about personalisation and why support could not be placed in his current accommodation. I was told that his placement was 'time based' and my son had not made the 'progress' that they anticipated and he needed a more structured environment where there was less focus on group work.

This does not entirely make sense to me. Last week a member of staff asked me for guidance about how to support my son fill in forms. I gave the guidance, but it was pretty basic stuff. Basically, it involved providing some one to one guidance.

I feel like excuses are being made to somehow move my son on but I am not sure why this could be. I just cannot understand why support cannot be given in his current situation and why staff seem so unwilling to provide the support he needs.


Am I paranoid or could there be another agenda?
I don't think you are being paranoid, just a desperately concerned mum, like me.
Turn the screws on Social Services, if neccessary complain to the Director of Social Services. Have you thought about a specialist educational placement, as he is entitled to education until the age of 25 I believe.
I would have thought there should be involvement by the social worker, with a discussion between you, your son, his social worker and the staff of the home - when A was in supported living regular reviews were held, which were attended by the team leader, A's key worker, her social worker, A and me.

Gilli
Hello,

Thank you for the support. Yes, I am a little puzzled. I think I expected the phrases, 'person-centred support' and ' multi-agency collaboration' to mean my son would be directly involved and central to the decision making process and that agencies would literally sit round a table and discuss things together. I had also expected that, as part of my son's informal support network (and the ones who will pick up the pieces if placements fail) we (his parents) would be closely informed about discussions and decisions.

However, the manager of the home has met with a social worker; then, a week or two later, he met with the Early Intervention team and we have been told there will be more meetings. My son knows nothing about any discussions pertaining to him moving and we know nothing about the results of any assessments by the EIT.

We are going to a meeting today at the home and I hope we can get some more useful information.
Janet_1601 wrote:
Fri May 18, 2018 5:21 am
Hello,

Thank you for the support. Yes, I am a little puzzled. I think I expected the phrases, 'person-centred support' and ' multi-agency collaboration' to mean my son would be directly involved and central to the decision making process and that agencies would literally sit round a table and discuss things together. I had also expected that, as part of my son's informal support network (and the ones who will pick up the pieces if placements fail) we (his parents) would be closely informed about discussions and decisions.

However, the manager of the home has met with a social worker; then, a week or two later, he met with the Early Intervention team and we have been told there will be more meetings. My son knows nothing about any discussions pertaining to him moving and we know nothing about the results of any assessments by the EIT.

We are going to a meeting today at the home and I hope we can get some more useful information.
Hi Janet
I'm sorry to disillusion you but all those words and phrases are meaningless in reality.
I have a 30 something relative who has Aspergers and other issues. He has been in the "care system" for over a decade and has been moved from placement to placement 4 times with hospitalizations in between. Each time there is either a fight over funding, no suitable place, little involvement with family, missing or autism ignorant social workers or no social workers, often a combination of all.
None of which is autism friendly, it is all too open ended, too slow or too uncertain

The family has had to be extra vigilant, pushy and well informed to try to keep up, let alone ahead.

The truth is there are very very few suitable places and even less funding. My relative has been moved firstly 70 miles from family home, then a further 30 and now back triangually 70 miles away. We hear stories of people being moved hundreds of miles.

You need to get him an advocate and legal aid, free if he's on certain benefits I believe because SS will ignore family whenever they can

The NAS, Autism society can be knowledgeable.
Get informed, get support and get ready for first battle in what will be a repeating war to get him what he needs.

Good luck
Sorry if this sounds dire but we've just heard of yet another couple of "system changes" that will adversely affect my relative. We were expecting something as he has actually been settled for 2 years now and know the "ssytem" would not let that last. We are fuming...again

Kr
MrsA
My son with LD qualified for legal aid as Social Services were not doing what the law said they should.