Huge gap in care service for young people

Replies

By Tricia

Re: Huge gap in care service for young people
Wed 24 Jun 2009 16:57

Thank you Sam for sharing this information.

I am fortunate that my son does not need two to one support when out and about yet he does need support when out and about.

He is appoaching 18 in september so has another two years in sixth form college (special school college). Yet, it is up to me to start and look around to find out what is available which I know is very little for his needs. Those with more complex needs it must be even more stressful.

At the moment I run a swimming fun pool session for families to attend who have children with ASD which is aimed at children who are unable to access public swimming pool. Yet it is always a worry to find funding to keep this going. The sessions are held in the school which most of the children attend so they are familar with the settings. With the added bonus it gives all the family something to do as a family.

Schools which have facilities available out of school hours should be made accessible for those families who are unable to access public settings. Some schools have some wonderful facilities such as hydro pools, light and sound rooms (Sensory rooms) Trampoline and access to many more leisure activity resources. These should also be avaiable without volunteers having to go with cap in hand begging to funders to find the funds to continue a vital service to those who need it most.

By Amberelen

Re: Huge gap in care service for young people
Thu 25 Jun 2009 09:25

The lady an her daughter in the newspaper article live a few miles away from us. Although Lexi has different condition an disabilitys and is a few years off leaving his very good special school I am worried about what will hapen on leaving childrens services.
As Lexi will not benefit from a college an any day services there may be now will probably be closed in 4years time when we need them !! funding or lack off !!!
A scary time for our young people an there families.

By carolm

Re: Huge gap in care service for young people
Thu 25 Jun 2009 10:46

I saw something about this on the tv this morning too - the cutover between children's services and adult seems to be pretty naff and nothing very much targeted at adolescents/teens.....there was a girl with anorexia speaking very articulately about what did/didn't happen in terms of support for her.

By JTelfer

Re: Huge gap in care service for young people
Thu 25 Jun 2009 12:59

Hi Sam

Sadly, this story seems to be mirrored around the entire country and for those with the most complex of needs, the future after leaving special schools can be very bleak.
The Inclusion Policy has seen many day care centres being closed, but what about those who do not cope in the community and need such environments?
Our 21 son has severe autism (and associated sensory difficulties) profound learning disabilies (estimated at 1 year) epilepsy and presents with life-threatening challenging behaviour. At school he had 2 rooms adapted for his sole use and he also had his own toileting and outside play area. Having left school at 19 with no future provision in place, he remained at home for 17 months with no outside support or services. The LHB has recently developed a day service for him which mirrors his schooling environment and he has 3-1 support. However, like so many others with very complex needs, he was badly let down during transition (14-19 years) and instead of early planning - he was ignored.
Good luck to Maree - I wish you ever success!

By ena

Re: Huge gap in care service for young people
Sat 27 Jun 2009 00:39

It seemed to me I only had 2 choices - stick him in residential & give up control lock, stock & barrel or have him with me 24/7 & get on with it alone. I chose the latter, can't say it's easy but I know he's being looked after. Day care places are none existent & even if you can find one there's no transport available. Situation seems to be getting worse.

By fenlander

Re: Huge gap in care service for young people
Sat 27 Jun 2009 12:55

We opted out of achools in 1999 when our eldest was 12 and youngest 8 because the statementing system failed to provide them with the understanding and support they needed and it made them mentally and physically ill - which in turn made us ill. As a result we were left to recreate the wheel as it were.
The main facet of school was that they were seen as and told that they were faulty and had to change to be acceptable in society. I realised that this was an impossible target even if you accept that tenet which I think is questionable since we are all shades of grey and Autism is just too far outside the grey spectrum of acceptibility.
So we were able to start from the basis that our boys are acceptable for who they are and assist them to live in the world by allowing them to explore and find how they wanted to live without pressure from above. I would think that after school this is what they need to do for a couple of years - to deschool themselves and adjust - like other young people do in their "gap" years and then decide what they can and want to do with their lives.
The problem I think is that this requires a huge adjustment on both sides - by parents and the young people themselves - and a panic situation seems to set in as to "Oh my God how on earth am I going to cope with them at home all the time!"
I realise that all are different but what I wanted to say was that it can be a very positive process and if you accept that there isnt necessarily going to be somewhere for them to go to replace school and give yourselves this "gap" period you can then more clearly see what it is that you and your "child" want without feeling panicked. Then you can look for ways of meeting both your needs.
I looked at a day centre provision recently which was recommended for our youngest now that he is approaching adulthood. The idea was good in that it would give him somewhere to go and meet people and give us a break. I really wanted it to work but it was totally wrong. It was in a factory unit in the middle of nowhere [makes you feel unacceptable and imprisoned] and the funding accessed from the Learning & Skills council relied on them structuring it to be aiming to achieve academic targets. This meant that the adults using it were being put through kindergarten style classes of learning numbers and letters and sticking pictures in books - presumably what they had been doing for the last 20 or 30 years. They looked dazed, soul destroyed and the adults working with them smiled a lot but looked unmotivated too. It was safe and clean but soul destroying.
My hubby worked in Social Education Centres for a while when we had to sell our business in 1997 because of lack of support for our boys. It was a similar story there - we believe that all adults, disabled or not, should have choice and freewill withing the confines of law and safety. What these setups offered was a continuation of school - being told what to do and when for the rest of their lives. Choice was given by giving them 2 options but if they preferred a thrid option not on the list they were forced to comply. Then when they reacted - as any of us would do - they were labelled aggressive and challenging and sat on even harder and drugged to comply..
Hubby couldn't do this so he talked to the "service users" [as they called them] as equals, allowed them more choice as much as he could and they all responded really well to him. Sadly this angered the other staff and he was forced to leave, even though it meant that some of the most "challenging" individuals had responded for the first time and cooperated with meaningful activities which made them feel so much better about themselves.
He wasnt even told what the "service users" disabilities were or what meds they were on or for what reason because that was confidential.
There was one young man who was over 6' and 18 stone plus with what you would describe as extremely challenging behaviour and hubby was given him 1:1 out and about in town and at the Leisure centre. He managed him brilliantly by giving him clear directions and anticipating pinch points and the lad managed to relax, enjoy and benefit from these trips out. His dad was so stunned that he contacted the centre to ask what had made the difference and when he found out his son had a new worker he wanted to talk to hubby who then found out more about the young man and was able to develop it further. Here was a situation where the young man himself had been strung up and aggressive due to oppressive management and the father had been exploding regularly at the staff because he knew it wasnt right - diffused by common sense. Problem was it set a precedence they didnt want to or felt unable to sustain and they started drawing it in by telling hubby it wasnt within their guidelines!!
After that hubby looked at working in two Lincolnshire Autism Care homes /colleges but he has told me that they resembled the old asylums with the "inmates" shrieking and rocking and staff shouting at them. He has told me not to even go there to look [I feel I should personally witness what is out there for completeness] as he says it will haunt me for the rest of my life.
I guess that we are unlikely to find anything we like having chosen to opt out of school provision and I dont like segragation but I wish thete was somewhere inclusive for our boys to go and enjoy - they are Autistic but want to socialise. Part of the problem as I see it is that everything has to be funding led rather than suited to the people using it and segragation in school dosnt allow young people to grow up understanding disability which turns them into adults who dont. Sad emoticon