SHARED LIVES

For issues specific to autism / Asperger Syndrome.
Hello,

I just thought I would update on the situation. I attended a meeting yesterday and my son and I were introduced to the Shared Lives Co-ordinator. A possible placement has been found with a carer who has one more young man (about two years older than my son) already living with her. The house is located in the city where my son wants to live and the placement could start in January (after introductions and an overnight stay and so on)

However despite all the positives, I am quite anxious. My son's placement at college broke down before Half term due to his anxiety and he has, essentially, nothing to occupy his time. I am contacting voluntary agencies to see if I can find my son some voluntary work and I have contacted a local church to see what goes on there for young people, but so far, my efforts have been fruitless.

My son has an EHCP and the Assessment and Review officer is going to contact some gardening groups, but they are essentially designed for people with learning disabilities and I am not sure how well my son would fit in. The Assessment and Review officer said she would get in touch with a Co-ordinator for a Personalised Learning Pathway, but we contacted this lady in June and she said she was not sure her service could meet my son's needs because it was designed primarily for young people with severe learning disabilities.

I am beginning to get anxious, because there is a lot of pressure for my son to leave the CAMHS unit (he has already stayed there four months beyond his discharge date), yet he has no activities or occupation to go to. He cannot cope with unstructured time and his mental health deteriorates rapidly if he is not mixing with people and purposefully occupied.

I am just worried that in January he will leave the unit to live in a very small household with nothing to occupy his day except his dark ruminations. Furthermore, when he reaches crisis point he puts himself seriously at risk (he has been found on the banks of rivers, screaming and he self harms in a dangerous way). He is also known to the police and was arrested in July for 'threats to kill'. This was when he was in deep crisis, but still I worry.

I realise that my worries may just be maternal anxiety and this placement could be very good for him. However, alarm bells are ringing, predominantly because nothing has been organised for him in terms of a package to go with the accommodation.
Hi Janet,
Have you raised your concerns with the Shared Lives Co- ordinator or the Carer? They are probably in a stronger position to raise these issues - social services & CAHMS want him accommodated ASAP, so they have negotiating power. Shared lives carers aren't expected to deliver 24/7 care, their service users are supposed to have other services too, this requires funding and it's easier to get funding in place at the start of any placement.

With the right support would he be able to return to college?

Does he have OT input? An OT assessment would be helpful in backing up the fact that he needs activities in place, social opportunities, structure to his day etc

Melly1
Hello,

Happy Christmas everyone. I have come here again because it is a safe place to voice my anxieties to people who understand and/or who will not think I am overthinking the situation.

I am feeling a little confused by the way my son's potential placement is being 'planned'. For example, just before Christmas, my son attended a meeting with our social worker and a funding manager from Social Services. My son said the meeting went 'well' but as our conversation progressed, it became obvious that he was not clear what the meeting was about. He said the SW had described 'funding' as a chocolate cake in which various agencies (health, social care, and so on) had to put in money and that his funding would not be sorted out until mid-January and that is when he would leave and live with the SL carer.

I managed to get hold of our social worker and ask what the meeting was about, why no-one from our family had been asked to attend the meeting and why my son did not have an advocate (I felt the cake metaphor could be helpful, but my son has now marked January 15th as the day he will leave to live with the carer). She eventually replied in a short e-mail to say the meeting was to begin planning his transition to adult services???

There is a Core Group meeting for the Child Protection Plans that my sons are under, on 30th December, so i will raise my concerns about lack of communication there.

My son went out bowling with the SL carer and the young man who has a long term placement in her home and it seems to have gone well. However, I would have liked to have spoken to the carer myself rather than have brief feedback relayed a few days later by the Coordinator. Perhaps, it is too early for such contact.

My son is going to the carer's house for tea later this week.

What really worries me is that, if a discharge date is planned for mid January, my son may have had a few visits to the carer's home and maybe an overnight stay, but not really sufficient time to become familiar with the new environment and certainly not enough time for the carer to know how to help my son if he enters crisis. Furthermore, no structured activities at all have been planned and I do not know how our family will fit in to the picture. For example, will my son visit us on certain days? Will we be looking at an overnight stay? Can I contact the carer? What contingency plan will be out in place if the placement fails?

In September, I supported my son to apply, as a late applicant, for a place on a supported course at a local college. The course was designed for students with additional needs. I informed the LA and got the go ahead to proceed with applications and enrolment from the Assessment and Reviewing Officer in our LA. Our social worker provided a positive reference for my son (not mentioning CP issues or the police involvement (which was an open case at the time of application)). I arranged taxis to and from the CAMHS unit and contacted the LA daily because I could not really afford the £40 daily transport fee. By the third week, the LA had taken over the transport arrangements. Then my son had a major crisis at college and it may or may not have involved attacking another student (my son claims what happened was an accident). My son was asked not to attend college (it was a few days before Half Term) and representatives from the college attended the CP Review which was scheduled in the Half Term holidays.

In that review, I was hauled over the coals. I was accused of 'setting my son up to fail' by encouraging him to attend college without all the LA support and negotiation being put in place (this included the college being sent a grossly out of date EHC plan by the Assessment and Reviewing officer). Professionals accused me of 'putting my own needs before my son's' and 'not working with professionals'.

I put in a complaint to the Local Authority about the claims made at the meeting and the lack of effective communication between departments, agencies and the college and the complaint was upheld.

Now, however, I see another instance of something being planned without effective collaborative engagement between my son, our family and all agencies involved. In short, I see this very complex young man, going to a placement that he will have had very little time to get to know, with no activities (no education, no training, nothing to do during the day) and with confused family members visiting him and taking him out in much the same way as they do when he is in hospital. Furthermore, when my son reaches crisis, his behaviour is extreme and I am not sure that the carer could cope with this. For example, he stole carving knives, wrote plans of how he would murder members of the public and was found screaming in the greenhouse when we stayed with my sister as a place of safety. He was arrested and Sectioned in July after he stole razor blades and bleach from my home and revealed plans to kill children. He also told police officers he wanted to rape me and other 'nonsense'. At college, he said he heard voices telling him to 'target' another student and then he launched a wheelbarrow into the student's legs.

I realise this is a lot of information, perhaps too much, but I just wanted to justify the anxiety that I feel. Children's Social Care say the problems are due to the family environment and evidence that he is perfectly safe outside the environment on the basis that he has had no real crisis whilst he has been in the CAMHS unit. Yet the incident at college occurred whilst he was in the unit; the incident at my sister's house occurred when I went with him as a place of safety last year and he has had self-harming episodes on the unit Furthermore, on the unit he has a ready made set of young people around him who share a common experience, and he has a team of professionals around him 24 hours a day (except for his 15 minute un-escorted walks or time out with his family). His placement with SL is with a single woman and a young man who attends a special school five days a week.

I really do apologise for the essay, but I do not know what to do or who will take my fears seriously. I really want my son's placement to work, but I am genuinely fearful that it is not been thought out properly. I do not want to contact the co-ordinator with the fears and details above because I will be accused of trying to 'sabotage' the placement (this was an accusation made when I raised concerns about him being placed 60 miles away in a flat with a key worker visiting three times a week).

Is there anyway I can ensure that the agencies concerned put in place an effective, practical plan for my son's transition and develop a robust contingency plan that can be put in place immediately if this placement does not work out?
Hi Janet,

I would be concerned too, that no one from his family, nor an advocate were invited to attend.
I don't know if you are aware of this website, but just in case, here is a link. It looks like it might be helpful and has a helpline too. http://www.youngminds.org.uk/for_parent ... /questions

My son went out bowling with the SL carer and the young man who has a long term placement in her home and it seems to have gone well. However, I would have liked to have spoken to the carer myself rather than have brief feedback relayed a few days later by the Coordinator. Perhaps, it is too early for such contact.

I would want to have been involved from the start too. I'd want to know if the SL carer had experience and training in supporting someone with MH problems who was also on the spectrum. I'd want to meet her and the other young man too.

What really worries me is that, if a discharge date is planned for mid January, my son may have had a few visits to the carer's home and maybe an overnight stay, but not really sufficient time to become familiar with the new environment and certainly not enough time for the carer to know how to help my son if he enters crisis.

I totally agree. Does your son have a care/support plan and a crisis plan? (excuse my ignorance, but I only have experience of ASD.) I would want to have read and approved these AND know the SL carer had been privy to them before they even went bowling. My S has autism and when he is anxious his behaviour can be challenging and he can put himself and others at risk. Someone unskilled/ without the right info would most likely make the situation worse if he was stressed.

Furthermore, no structured activities at all have been planned and I do not know how our family will fit in to the picture. For example, will my son visit us on certain days? Will we be looking at an overnight stay? Can I contact the carer? What contingency plan will be out in place if the placement fails?

I would be VERY concerned about no structured activities being in place too. It is much easier to get the funding for activities before the placement is agreed. Does his care/ support/ OT plan not stipulate the need for meaningful activities? Who is involved with your son's treatment who will help argue how important this is from an ASD, MH and just an ordinary wellbeing perspective?

I put in a complaint to the Local Authority about the claims made at the meeting and the lack of effective communication between departments, agencies and the college and the complaint was upheld.

I would remind the social worker and others of what happened, that you made a formal complaint and it was upheld and spell out what you said here:

Children's Social Care say the problems are due to the family environment and evidence that he is perfectly safe outside the environment on the basis that he has had no real crisis whilst he has been in the CAMHS unit. Yet the incident at college occurred whilst he was in the unit; the incident at my sister's house occurred when I went with him as a place of safety last year and he has had self-harming episodes on the unit Furthermore, on the unit he has a ready made set of young people around him who share a common experience, and he has a team of professionals around him 24 hours a day (except for his 15 minute un-escorted walks or time out with his family). His placement with SL is with a single woman and a young man who attends a special school five days a week.

You need to spell the above out for them too.

I think you have to voice your concerns and voice them in a way to convey you are trying to prevent the future placement from failing.

Is there anyway I can ensure that the agencies concerned put in place an effective, practical plan for my son's transition and develop a robust contingency plan that can be put in place immediately if this placement does not work out?

You need to ask the social worker and SL co ordinator this. There are several men with a learning disability who go to Special Olympics and are in SL placements. One of the men's SL Carers retired and he was moved into respite until another SL family was found, this took many months.

Write down all your concerns. Send emails letters to all the professionals involved in your son's care. Request they acknowledge receipt. State what you would like to happen. If don't get suitable written assurances, then go higher: social work manager, head of CAHMS etc your MP

Melly1
I have had many problems with SSD. I'm sure that a major problem is that they now keep all files on a computer, and staff can't be bothered to check back. New social worker has recently turned the clock back 10 years for my son's care, it's causing me huge problems. So summarise as much as you can in one letter to all concerned.
Hello,

Our old social worker has just sent me an e-mail saying that the Co-ordinator from Shared Lives has messaged her to say that SL can no longer continue to progress my son's placement. Apparently, decision makers at SL have read the Forensic Report and the Children and Families Assessment report and consider my son too great a risk.

I am really confused. SL have had these reports for about a month and my son has been to tea with his potential carer and was going on an overnight stay on Thursday. He was looking forward to moving on to his placement.

Now, suddenly, he has nothing: no activities, no placement, no education and only a couple of weeks left before he has to leave the CAMHS unit.

I was anxious about the placement, but I thought robust support and activities and a cogent Plan B, would have been enough to give it a chance to work.

Now, I don't know what to do. I have left messages and sent e-mails to CSC and the Shared Lives Co-ordinator asking for a meeting so we can talk things through. However, I am going to see my son tomorrow and I know he will talk about stating overnight with his potential carer. He is looking forward to this. I just don't know what to do.
Hi Janet
I am very sorry to hear this but I am afraid it is only a too common story. My ASD relative has been let down on placements at least 10 times due to either funding or availability or suitability problems. The whole system ( for want of a better word) is very flawed and definitely not suited to people with ASD or anxiety issues.
I wish I knew what you could tell him, but I don't.
I don't think its worth meeting the SL Cordinator, she won't be able to offer anything but by all means bring pressure on his social worker. But do remember they can't magic places out of a hat.
My heart goes out to you.
Xx
MrsA
Hello,

Thank you. It would be 10 times better if my son had something to do, then at least there would be some consistency in his life. My thoughts keep going back to some sort of residential college, but my son rejects his diagnosis. I might explore this option further.
Hello,

I apologise for continuously adding to this post. However, I attended a Core group meeting for my sons earlier in the week and suggestions were made for:

Section 20 specialised fostering,

A residential placement in a group home, perhaps through the Hesley Group, Autism Plus or Action for Care.

I am unsure how practical a fostering arrangement would be. My son is nearly 18 and, in addition, I cannot see any difference between living in a fostering arrangement and living with a Shared Lives arrangement.

My hope at the moment is that a group home can be found and, somehow, my son can accept it. In fact, I have made contact with Action for Care to try to arrange an informal visit for me, so I know whether it has a good chance of meeting my son's needs.

Has anyone any experience of group homes provided by the organisations listed above?
Hesley Group have some schools near me, their fees are around £120,000 per year for some pupils, I'm reliably informed. The very fact that the LA are mentioning them does at least suggest they are taking your son's very special needs seriously.