,Disability+(Society),Young+people+(Society),Children+(Society),Long+term+care+(Society),Social+care+(Society),Local+government+(Society),Society,Special+educational+needs+(SEN),Schools,Further+education+(NOT+Universities.+Vocational+and+post-school+courses),Education,Health+(Society),Nick+Hornby+(Author),Books&c5=Society+Weekly,Not+commercially+useful,Education+Weekly+Education,FE+Education,Health+Society,Local+Government+Society,Health,Schools+Education,Children+Society&c6=Amelia+Gentleman&c7=11-Oct-11&c8=1645323&c9=Article&c10=Feature&c11=Society&c13=&c25=&c30=content&h2=GU/Society/Autism)
Autistic teenagers like Danny Hornby have nowhere to go when they leave school. A new campaign hopes to develop post-19 services that open up life chances and opportunities for all
When Virginia Bovell realised there were no schools offering the intensive support that doctors said her three-year-old autistic son needed back in 1997, she got together with four other families and set up a specialist school offering intensive, autism-specific teaching.
Fourteen years later Treehouse, the school they created in north London, is recognised internationally as a model for how children with autism should be taught.
But Bovell has recently found herself confronted with a new challenge.
Her son Danny, now 18, is on the brink of leaving school and she has been searching for a suitable place for him to continue his education. Dismayed at the quality of what's on offer for children with autism after school, once again she has joined forces with other parents to campaign for radical improvement.
A report published next week by Ambitious About Autism, the charity aligned to Treehouse school, reveals that only 19% of children with autism continue with any kind of education after they leave school, and concludes that this is because there are so few colleges equipped to accommodate them. About 85% of adults with autism are unemployed.
The report, Finished at School: What Next for Young People with Autism? says: "Families often feel there is nowhere for young people with autism to go once they have finished at school."
Most autistic children are faced with what Bovell describes as premature "retirement" in their late teens, with the option of living at home with their parents for the rest of their life, going to live in a residential community (of which there are very few), or spending time at daycare centres, often full of people who are two or three times their age.
Without continued support, the skills that children have been taught can be lost, leading to a "huge waste of funds", the charity states.
"Dedicated teaching staff say that one of the saddest, most frustrating aspects of their job is that they put in all this effort and see all this progress for a young person at school and then find it totally heartbreaking to see that nothing was available afterwards," Bovell says.
"Hearing about adults with autism who can't access learning opportunities post-school is desperately dispiriting."
Although their campaign focuses on improving opportunities for young people with autism, the charity's findings will resonate with parents of children with other disabilities, who often find that state support throughout childhood is replaced by a black hole once they reach 16.
"For young people with autism, school is all too often the end of their education," writes Robert Buckland, the Conservative MP for Swindon South who sits on the all-party parliamentary group on autism, in a foreword to the charity's report. "By failing to support young people to continu e learning beyond school, we create a barrier to them living more independently and gaining employment. This ends up creating large long-term costs to society."
Adult social care services face increased costs "due to our failure to support young people to live in their community and contribute to society," the report argues. The annual cost of supporting people with autism in the UK is estimated to be £27.5bn, the report says.
Bovell's new campaign is significant because the work she and other parents (including her ex-husband and Danny's father, the novelist Nick Hornby) did to improve services for children with autism had a profound impact on expectations nationally, showcasing what was possible and encouraging parents to demand more from their local authorities.
Three years ago, a permanent complex of beautifully-designed school buildings was opened for Treehouse, complete with specialist playground equipment, music rooms and facilities for teaching children to cook and live independent lives. Over the past decade there has been greater recognition that autism, which is a lifelong neurological condition, affects a larger number of people than was previously accepted. Despite this, local authorities have not responded to the growing need.
"When we were starting, one of the reasons there was very little provision was that people were still working on a prevalence rate of four or five per 10,000, now it's widely recognised that the autism spectrum affects 1% [of children]," Bovell says.
"No one knows whether this is just to do with improved diagnosis or an actual increase in prevalence. But autism is no longer a very, very low incidence condition which we can ignore. There need to be more services. Campaigners have been talking about a ticking timebomb for some time, pointing out that if there are this number of children coming through education, when are adult services going to wake up?"
The charity is developing plans with a number of further education colleges to support young people with autism to continue their education. There is no autism-specific college in London and the charity wants to change that.
"You can make a national difference through your own school, if you are putting up a template to illustrate what others can be doing as well. What we've done here has been codified and replicated elsewhere. We want to do the same in further education," Bovell says. "It has to be replicable. We are trying to change the environment for all young people with autism wherever they live."
The government's green paper on special educational needs published earlier this year offered a proposal to extend support for disabled young people up to the age of 25, and the Ambitious About Autism campaign wants the government to create a legal right to educational support up to the age of 25. However, there is growing pessimism about this ever becoming policy, given the
Health and social care bill: decision time for Lib Dems | Editorial
Liberal Democrat peers must decide whether to acquiesce over a botched law their leader says was the best deal he could get
It hardly needs saying that the original health and social care bill was awry; after all, the prime minister himself agreed to large chunks being rewritten. Nor could anyone fail to spot that the process has been a mess – first there was the extraordinary legislative emergency stop, and then indecipherable organograms emerged from the wreckage. But amid the confusion sight has been lost of how high the stakes remain: up for grabs is whether the English NHS will remain truly national. In two crunch votes in the Lords on Wednesday, Liberal Democrat peers in particular must decide whether loyalty to their leader requires acquiescence in a botched law which he says was the best deal he could get.
Ordinarily, an unelected Lords properly restricts itself to tweaking the work of the democratic house, but the basis for such restraint depends very much on the mandate. While the Conservative manifesto signalled rejection of the sort of top-down reorganisation now under way, the coalition agreement promised to democratise the care trusts that now stand sentenced to death. Knock down the straw men that Andrew Lansley's office has constructed, and only one serious argument for passing this law remains: the health service has just suffered a year of chaos and it cannot afford any more drift. Already some staff are picking up redundancy cheques from one NHS body before being rehired elsewhere in the empire, and even before GPs' consortiums are fully established they are being forcibly reshaped. It is thus understandable if hapless health managers now crave stability above everything else. Labour and crossbench peers, however, must reject this as the logic of the cowboy builder – who first creates ugly new facts on the ground, and only later asks for planning permission. They should vote against second reading.
For Lib Dems who wish the coalition to succeed, things are more complicated. After Nick Clegg rashly welcomed the summer's ambiguous Field report with premature declarations of victory over the Tories, outright rejection of the bill could now test the blue-yellow partnership to breaking point. The party must pick its fights. It must stop being distracted by secondary issues about the precise powers of public health boards, "clinical senates" or the other organisational fixes with which Field answered every controversy. Peers must get to the nub of the matter, as it exists in the minds of worried patients up and down the country – namely, the drift from an internal to an external market in which commercial logic takes the place of political responsibility. Happily, the crossbenchers David Owen and Peter Hennessy have devised a neat means of getting the all-important powers of the secretary of state right, without scuppering the legislation. The pair propose tasking a dedicated select committee with ensuring the health secretary retains the authority the public would expect – not to micromanage, but to step in where things go wrong. The current bill does not guarantee this: Lord Owen warned the chamber on Tuesday that it is not even clear how far Whitehall's writ would run in a pandemic. As the forensic analysis of the Lords constitution committee shows, the bill that emerged from the chaos of spring tinkers with the foundational political responsibility of the NHS – and not for any purpose that has been plainly stated.
As health budgets are squeezed, it will be more important than ever to have clarity on the underlying principles, such as where the buck stops. The coalition might have hoped to evade blame for problems that arise from the financial climate, but after the ruinous row over these reforms, every dropped bedpan will inevitably reverberate back to Whitehall – whether that is desirable or not. The descendants of a liberal party which helped to found the NHS now must decide whether they are prepared to risk a row to defend it. Capitulation here could carry a higher price than raising student fees.
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