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	TX: 16.08.04 - LOCAL AUTHORITIES ARE FAILING TO TRANSFER DISABLED CHILDREN TO ADULT SERVICES SMOOTHLY SAY CAMPAIGNERS听 PRESENTER: SHEILA MCCLENNON听听

	听Downloaded from www.bbc.co.uk/radio4 THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 成人论坛 CANNOT VOUCH FOR ITS COMPLETE ACCURACY.听 MCCLENNON Now bringing up a disabled child is rewarding but it can also be difficult and challenging. Some parents find that one of the most anxious times is when their child leaves school and听transfers from child to adult social services. Disability organisations have told us that some local authorities are making this transition a very stressful process. They say that some parents may have to do a lot of the research themselves when it comes to finding suitable care for their child, have difficulty obtaining funding, experience a lack of communication from social workers or find a lack of suitable provision in their local area. The problem is worse for parents of children with profound and multiple disabilities, many more of whom are surviving into adulthood.听 One mother who's unhappy with the help she received from her local social services is Linda Pistano [phon.] in Bexhill, East Sussex . Linda's daughter Michelle is 19 and she has autism , Down's Syndrome, a hearing and a visual impairment. She was due to leave school in April. 听 PISTANO The social services did their best to give us a split package - they wanted her to attend the college two days or three days a week which was so totally unsuitable. She found the stress levels at the college very, very bad. We attended so many meetings, almost every two weeks there was a meeting scheduled. From the middle of November until the middle of January we had no social worker at all. When the school heard of the difficulties we were having they did agree for my daughter to stay on an extra term because they didn't want to see all of their hard work go to waste. The whole process was so protracted and being dragged out so long that we feared that my daughter would come to July, the second leaving date, and there still be no package. And we told the social services that if they didn't get something in place that was suitable then we would take them to court. Only after taking that step and really, really putting our foot down we got the package that my daughte r deserves.听 My daughter starts at the Sussex Autistic Community Trust day care centre, which we'r e all delighted about. We were prepared for a change but nothing could have p r epa r ed us fo r the st r ess. I just feel that it's all money d r iven and it's not in the best inte r ests of the child r en.听 MCCLENNON Linda Pistano. Well I'm joined now by Jo Williams, the chief executive of the learning disability charity Mencap. Jo, listening to Linda's story there, okay, yes it's had a hopefully happy ending, but not before an incredible struggle. How common are cases like Linda and Michelle's?听 WILLIAMS I think what's happened is that we are seeing now children and young people with a range of impairments - complex and profound impairments - who are living into adult life and the planning processes have not taken account of that change in numbers. So there's an increasing number of young people coming through. We know that there are probably about 60,000 children who are dependent on technology for their wellbeing. Now those young people will be requiring adult services and the adult services have not caught up.听听 MCCLENNON But that's what's hard to believe, isn't it, if he can say there are 60,000 children, now they're in the system, they are there, they're not going to sort of disappear overnight so why aren't the services in position for when they reach adulthood?听听 WILLIAMS The r e's been some ve r y useful and ve r y good changes in the wo r ld of lea r ning disability - Valuing People was a White Pape r published by gove r nment. And has made wide r anging changes - helping people to go into employment, having more meaningful activity during the day. But this greater challenge of those with profound and multiple disabilities and impairments has not really been captured, as your story r eflects. Now is the time when local government needs to be thinking and planning with health primary care trusts about how they address this problem in their locality. 听 MCCLENNON So at what age is this becoming a crisis for families? 听 WILLIAMS Ideally the authorities should be starting the planning process at 14. It was interesting that it only happened in April for this particular family - that's far too late. It needs to start early, it needs to involve a whole range of different agencies so that it's not just about looking for maybe further college activity or meaningful and possibly work but also making sure health needs are catered for as well. And that ought to start early - all the agencies coming together .听听 MCCLENNON I mean we heard Linda there saying that it's not good enough just to have a package, it has to be an appropriate package and how frustrating it is, if you've seen your child making progress to suddenly have this drop off in support and worr y about them just sitting at home and not getting any help.听听 WILLIAMS Highly stressful. The assessment process should be about that young person, about that family and almost, in a way, wrapping around them a whole range of different ser vices which will enable them to have a quality of life and some degree of maximum control as possible for them about what happens.听听 MCCLENNON What obligations do local authorities have at the moment to provide services for these young people?听 WILLIAMS They have an obligation to carry out an assessment and I think local authorities are working very hard to try and meet that obligation but it isn't universally - as we've heard this morning - it isn't happening universally, it's patchy. And one of the challenges, I think, is for the staff that a recarrying out these assessments to have the skills and the know how to deal with these young people who are really challenging all the services to come up with creative new ways for meeting their needs.听听 MCCLENNON Is it all bad - are there some areas that are notably better than others? 听 WILLIAMS Yes, it's not all bad and there are some really exciting things happening in some areas, so that colleges are looking at how they can create appropriate courses, which may be focus on improving communication skills. So there's some exciting things happening and of course for every family they want to have that opportunity for their听young person, as you say. They've seen their child grow and develop and enjoy probably a ver y good service through the school system and they're looking forward to the future and that ought to be positive too.听 MCCLENNON Jo Williams, chief executive of Mencap. Well East Sussex social services sent us this statement:听 East Sussex county council have supported and will continue to support the Pistano family, currently Michelle has been funded for a five day service with the Sussex Autistic Community Trust.听 Mrs Pistano also has carers vouchers and outreach support. And Michelle was also able to remain at school for an additional term because of her age.听 Well You and Yours is planning a series of reports on autism , we're keen to hear about your experiences of the numerous treatments available. Contact details in a moment.听 Back to the Transcripts homepage Back to the You and Yours homepage The 成人论坛 is not responsible for external websites

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