Even before Luke Dicker hit what disability campaigners and families have come to know as the "cliff edge", he knew how hard it could be for an autistic child moving through the education system. But perhaps nobody could have predicted that it would reach the point where he would hold a knife to his mother's throat while the police tried to calm him down. Troubled even as a very young child, frantic with energy that would be diagnosed as attention deficit hyperactivity disorder and boiling over with frustration at the communication difficulties that came with autism, Luke's problems came to a head when he moved to secondary school. His statement of special educational needs for autism had been made only weeks before, and his mother, Jan Greenman, was convinced that he would not cope, even with the one-to-one support he had been promised. She was right.
In a far larger environment than his village primary school in Wiltshire where he knew everyone, Luke was overwhelmed and became a target for bullies. He developed a phobia of school, Greenman says, and the struggle to make him attend pitted mother against son.
By the time Luke was 12, his GP had prescribed Risperdal, an antipsychotic used to treat anger in autistic children, to calm his outbursts. Things reached a low point one "very, very bad" day when he refused to go to school. "I had to call the police when he held a big knife to my throat. To have to call the police on him was horrible," Greenman says. "But they were the first professionals Luke had come across who understood him. They talked to him, calmed him down. And the next day, they brought the knife back to show that they trusted him."
His troubles at school continued and ended only when he brought a penknife with him to teach the bullies a lesson: he was expelled, aged 15, for threatening them.
By chance, the only school that could take him - one for children with emotional and behavioural disorders - was run by a headteacher who has an autistic sister. Under the supervision of Trystan Williams, Luke flourished at what is now the Springfields Academy, winner of outstanding school of the year at the 2012 TES Schools Awards.
"It was a miracle in our lives," says Greenman about the school and the staff who understood Luke's condition, took an interest in his obsessions - at the time, Star Wars - and used them to motivate his work. "He realised he was good at art. He took an art GCSE in a year and got a B."
And that is when he hit the cliff edge. Springfields could not keep him on beyond 17 - an exception had already been made to give him an extra year because of his late start. His only option would be to attend a large local college, which was all too similar to the scenario that had overwhelmed him with anxiety years earlier, but on an even bigger scale. "His self-esteem was just coming back. I thought it was setting him up to fail," Greenman says. Mother and son both knew the damage that forcing the issue could cause; his education was over.
When students with learning difficulties or disabilities leave school, they move into a new support system that is supposed to make education available to them until they reach 25. But in reality, they face a series of hurdles, including a different assessment system, a different and more constrained system of funding, a lack of advice about their options and a lack of support in helping them make the transition from school to college.
Even if they can persuade authorities that they need the same level of support they received in school, their new assessment comes with no legal right of enforcement. Now, campaigners who have exposed the cost and human toll of the system - 46 per cent of all disabled people under the age of 24 are Neet (not in education, employment or training) - have brought the government to the brink of a radical reform.
"Our campaign was really inspired by the fact that lots of parents of young people who are disabled told us about their experience of coming to the end of school," said Mark Atkinson, director of communications, policy and research at Ambitious about Autism. "They had the fear that they were approaching a black hole or a cliff edge - that's how these families explained it - that the support was beginning to drop away.
"A young person is often left not doing very much: only one in four children with autism continue their education after school. Or they get offered some sort of long-term residential care. It's not about being critical of residential care, but all young people should have the choice about the way they live their lives. There are lots of people with autism who have the right to support and the capability to gain employment and live independently. We believe there is a complete waste of talent and potential for a large number of young people."
In 2009, only 50 per cent of local authorities had a procedure in place to guide the transition of students with special educational needs. Even fewer were able to lay out to parents and students what to expect. "Sometimes it happens, sometimes it doesn't," says John Dickinson-Lilley, deputy head of public policy at Sense, a charity for deaf-blind people. "Sometimes it happens at 16, and that can be not a good experience. It can make college very traumatic."
James Robinson, policy lead for children and young people at learning disability charity Mencap, says that it has worked with families who were excluded from any consultation process. "It was going over their heads and they felt like bystanders to their children's future," he says.
The failure to inform families properly about their options means that many students do not even take up the learning disability assessments for college, according to Ambitious about Autism. If they do, they are unlikely to receive the same level of support they had at school. Julian Gravatt, assistant chief executive of the Association of Colleges (AoC), says: "Money tends to drive the assessment, rather than the other way around." Colleges try to find funding from other sources to bridge the gap, he adds, but it is not always possible.
The government's new proposals, set out in draft clauses to the special educational needs bill, which is due to be published in full next year, aim to transform all this. FE colleges will be brought under the same statutory duties as schools for the first time, and will be funded from the same source.
A single assessment system, leading to an education, health and care plan that stays in place from birth to the age of 25, is intended to replace the cliff edge with a seamless pathway. "As the Paralympics are powerfully reminding us, disability is not necessarily a bar to outstanding achievement, as long as people are given the right opportunities," said Sarah Teather, who was minister for children and families when she announced the plans. "Too many parents have faced bureaucratic barriers. We are making it easier for parents to access help for their children."
On the face of it, the proposals deliver what charities and the families of disabled students have long been calling for. "It will extend the statutory protections of the statement all the way through college. You won't have that transition at 16, it will stick with them. It should be simpler. The support will follow them," says Dickinson-Lilley from Sense.
But the scale of the change is causing concern. "I think this is a completely mammoth reform," says the AoC's Gravatt. "They are trying to do five really difficult things and to do them all at once. First, they're going to introduce a new assessment system. Then, they're trying to merge three different budgets which (former FE funding body) the Learning and Skills Council couldn't: the budgets for sixth forms, the budget for independent specialist providers and then the money that goes for high- cost students in colleges, higher-level additional learning support. The final thing is that they're hoping to save money."
Colleges are able to support students with profound and multiple learning difficulties for an average of pound;30,000, compared with pound;68,000 in residential colleges, making some savings possible. But the Department for Education denied that cost was a motive.
The transition from school can fail even when colleges offer pioneering levels of support, as the experience of Nikki Venables and her son Jacque shows. Even what seem like small changes to the system can be felt as deep shocks by vulnerable teenagers.
After a very positive experience in a special school, which he did not want to leave, Jacque enrolled on an entry-level course in skills for working life at Telford College of Arts and Technology. The college has developed an innovative programme for students with autistic spectrum disorders, offering highly individualised programmes, specialist facilities and dedicated, trained staff. It boasts 92 per cent success rates and some students even progress to university.
In addition, Venables and her son had thought that they would benefit from a "buddy system", where a specialist member of staff was assigned to each student. But the funding was reduced the summer before Jacque moved to the college, and it used a large team of trained teaching assistants instead.
His first year passed successfully but on returning the next September, he became lost and disoriented one day, spending two hours alone in college not knowing where to go. He was panicked and the family felt betrayed that he had not had a "buddy" accompanying him after all. With relationships having broken down, he left the college.
"He withdrew into himself. He never went out of the house. He wouldn't walk anywhere or do anything," Venables says. "He was very angry, sad and he went into depression. It was awful. There were a lot of arguments, lots of tears."
The college says that Jacque had not been able to explain why he did not want to return and had not complained about the level of support. It maintains that his one-to-one assistance remained the same. But the incomprehension is mutual. "He won't trust anybody in education ever again. He won't call it college, he calls it `the dreadful place'," Venables says.
Campaigners say there are three main flaws in the plans for reform. The first is that ministers want to define education after school narrowly. University education will not be included: it will continue to have a separate support system. Ambitious about Autism says that the government should use the same definition of education that it uses for raising the participation age, including work with training - potentially easing the transition into employment.
But instead, under the current proposals, apprenticeships will not be included in the new education, health and care plans. The DfE announced that the duties would apply only to FE colleges - but the majority of apprenticeships are run by private training providers.
"I want more disabled people, for example, to benefit from apprenticeships," said John Hayes earlier this year when he was skills minister. "I want more people with learning difficulties to be able to benefit from apprenticeships."
If that is to happen, they will need specialist support, says Mark Atkinson from Ambitious about Autism. "Your education, health and care plan will stop if you take an apprenticeship," he says. "Young people with autism may learn better in context rather than in theory. "Apprenticeships are real to young people with autism. It's absolutely unacceptable that the plan falls away."
A DfE spokesman said that the proposals are only in draft, and that apprenticeships could be included in their provisions.
The second flaw in the reforms is that if students leave education and return, they need to be reassessed and may have to fight to regain their previously agreed level of support. "It was supposed to be a proper 0 to 25 system, but it feels like a 2 to 19 system. You don't get a plan until you're in education, and if you fall out of education after 19, it ends," says Dickinson-Lilley.
Not legally binding
The third flaw is that while the education provision is guaranteed by law, the health and social care provisions are not. Last year, an estimated 3,600 people went to tribunals to ensure that they received the right education support. But if the health or social care aspect of the plan fails, families have no recourse, and it may derail students' education.
"A lot of parents have had to take legal action to get support delivered. If the social care and health plan doesn't have legally binding requirements, parents won't be able to ensure it gets delivered," says Dickinson-Lilley. "Disabled kids are more likely to have a wide range of issues. It could be there are behavioural difficulties, it could be they have underlying health problems. A lot of multisensory impaired children have complex health needs. If those aren't being met, the chances are that the child won't even be in education."
Sense also points out that many children's needs are still not fully picked up by the system in schools. They have identified a minimum of 4,000 children under 19 who are deaf-blind. But the official tally is just 935, with only half having a special educational needs statement. Add problems like this to the numbers of disabled people who drop out at 16 or 18, and better legal rights could unleash huge pent-up demand for education and support.
Ambitious about Autism has begun working with colleges on a charter for inclusion, which now has about 30 colleges supporting it. It commits the college to training staff to understand the needs of autistic students and to go beyond the legal requirements. But so far, that addresses just one kind of learning disability. The AoC says that provision for learning difficulties and disabilities has been increasing in colleges for 15 years, often against the odds.
For many years, Leicester College has dipped into other budgets to support otherwise unfunded students with severe learning difficulties. "We made it work, but we knew we were making a loss on it," says principal Maggie Galliers.
Now the college is opening a dedicated centre for students with profound and multiple learning disabilities and has negotiated a special funding agreement with the Education Funding Agency. It ensures that even as the college's budget gets tighter, supporting such students can continue - just as the reforms hope to achieve for everyone.
But after raising expectations of parents and students with greater rights to educational support, ensuring consistency and reliability will be crucial to retaining their confidence. "I've lost a lot of faith. I would love to be positive about it," says Venables. "But I don't know how they're going to do it. What are they going to offer these children? I know Jacque wants to be independent, wants to live on his own. But I don't know how we're going to get there."
Illustration: Luke Best