residential schools for autistic young adult, help.

[duke]

My 17 yr nephew is severely autistic and the topic of future education/residential home is now on the table after years of me trying to talk about his future. Every time I try to talk about it my sister just cries and says she's not ready to talk about it. Her son is severely autistic and will always need 1:1 care. She knows that he will need to go into residential care but is making no moves to find out about it, I've said I will go with her to look, but one look at a brochure and she is in floods. I told her today I will start to find out information. Starting with who pays for it? Can you look at places out of your county? How do you know somewhere is good? Is there any support groups for this transitional period? I'm not going over her head on this, she has always been realistic about her sons capabilities and knows college is not an option, he has been extremely violent towards her and always is more demanding when she is around, he sees her as a provider. I want to be her level head as she just can't seemed to get beyond the emotional feelings she has towards him.
Any advice would be greatly appreciated.

Have you asked your sister what she wants for her son? You feel strongly he should be in a residential placement, but she might want him to stay at home with a good support package. I know you are concerned, but spend some time listening to your sister to find out how she feels rather than keep pushing the residential care option.

The reason your sister is so emotional about this is because it is her child and you are talking about her very vulnerable, dependent child leaving home and being looked after by strangers for the rest of his life. As I am discovering, it is a head fuck. However, I do feel it is her duty to her son to get a grip and start finding out what is out there for him, not yours.

If he has severe autism, he will probably have a social worker and a Transition worker. Both workers are meant to help parents and child through the process of moving into adult care/education/health, i.e., 'Transition'. Transition is meant to start in year 9, that is, when the child is about 13 or 14 years old, with a review, resulting in a plan that is meant to look at the child's and the parents aspirations for the future.

What often seems to happen is that parents are not really guided much at all and then panic decisions are made just before they turn 18.

Go to www.learningdisabilities.org.uk/publications and download the leaflet 'Prepared for the Future'. It is a general introduction to transition into adult life. Be warned though, the government is making sweeping changes to all sorts of things, so some information might be out-of-date. He will need to fit the local authorities criteria for help too, which is now increasingly set at 'critical' or severe. The Challenging Behaviour Foundation also has good publications and advice for parents of children with severe learning disabilities and challenging behaviour

Sorry that link doesn't seem to work. It's from the Foundation for People with Learning Disabilities and it's in the Publications bit

At the moment he is in school full time and has the maximum time without being shared care in a residential respite home, this works ok although the time she is with him alone she is very limited to the places she can go as he gets obsessed with things, ie an icecream van has resulted in him hitting her as he couldn't get to it to get one. He is 6ft 3 and can be very forceful and impossible to move if he decides he doesn't want to go somewhere. When he is on summer holiday his behaviour deteriorates without the structure of school life. We have discussed he's future together, he's father left him at 1 and hasn't seen him since he was 5, so she hasn't got support there, she has 3 other children and a full time job in the mix too. My problem is she says the school have suggest colleges and she knows that's not going to be right for him, she wants him to go to a full time residential home but can't bear the thought of him being with adults. She doesn't see a 6ft 3 bloke she sees the little boy lost. I can't express strongly enough how much I sympathise with this and understand how difficult this is for her. Yesterday she said she wanted me to help her which I always promised I would from the day she found out. I'm not pushing her I just don't want him to get to 18 and someone say " you should of started this process 2 years ago." I presume there are waiting lists etc. The main crux of the problem is that she can't face the thought of starting it as she knows she's going to cry all the way through. She's always said I don't need to think about that yet, but now the school gave been discussing it she knows its time. I think short visits earlier on get used to the idea of looking and it will be easier than waiting and being forced to make a rushed decision. I'm trying to get her to go on ms to talk it through but she can't face even doing that.
Thanks for the link and reading the ramble.

You are obviously a very caring sister. Can you go to the meetings with her and just be there to support and listen and meet those professionals who are meant to be supporting her? She should have started this process 2 years ago and perhaps you need to be firm with her also because by sticking her head in the sand, she is not helping her son at all.

The Care Quality Commission inspects care homes and they are published online. Also, maybe an organisation like the National Autistic Society has links to autism-specific residential care or residential educational establishments

DS is in a residential school but it only goes to age 19, so I'm not sure of the funding process for adults. Our place is funded by the LEA but I think adult places would be funded by social services or possibly the LSC. I can understand how stressful it is for your sister but I agree with Bakelite that she does need to face the situation and be an advocate for her son.

A full-time residential place is going to be significantly more expensive than a day college placement so she is going to have to convince the funding body that it's necessary to meet your nephew's needs, with professional reports recommending a specialist placement. What kind of colleges are being suggested by the school - are they mainstream and local day places, or specialist colleges?

There are some useful links on the NAS website about transition.

YPLA guide to independent specialist placements - it's very dry, but it describes the LA's legal duties in respect of learners aged up to 25 who are subject to a learning difficulty assessment. This is a brief parent-friendly guide to the process - there's also a directory of specialist residential colleges on that link.

I've heard good things about Cambian and Camphill colleges.

I would strongly recommend getting advice from a charity to clarify the legal position. Parent Partnership or IPSEA may be helpful, or try Contact a Family.

my dd has an assessment at a residential college next week it will be funded by social services/health/education they all have to agree to funding. my dd is 17 with asd/asp. this placement was reccomended by health so that dd can learn to look after herself.

Hi

You sounds like a great sister.

I do think she's in for a rough ride: depending on where she is sopme LAs are now only funding residential in crisis situations- here that means abuse by or terminal illness of a carer. Educational resi places are a little easier to get as part LEa funded but even then it woudl be short erm at 17.

Do start by speaking to teh NAS; I know for a fact tehy run some decent provisions themselves for challenging adults 9there's one opposite my house and I havent any problems with it, which as a former care worker, parent of asd kids and idealistic student is pretty rare !).

'depending on where she is sopme LAs are now only funding residential in crisis situations'

Peachy, is this true? I may be in for a rougher ride than I thought I was.

Sorry, my third link should be this.

I would also suggest you look at camphill colleges. My brother went to one that catered for young adults up to 22 or 35 (can't remember which). Have to say though, it is a difficult path to tread and she will need support. We have had to fight and fight to get provsion for my brother and I can't imagine things have got better. My brother went to a special college after school for 2 years (which to be fair was largley a disaster). He then moved to camphill at age 18 I think and had two years there as the authority would only fund 2 years (I believe normal is 3 years with social services and the LSC jointly funding. (At least this is how it was for my brother, but this was about 6 years ago).

That should read 22 or 25!

We have a Camphill College near us and it only accepts young people with moderate or mild learning disabilities. Would love to know about other Camphills that accept people with severe disabilities feynman