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.
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.
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.
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.
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.
Colleges are able to support students with profound and multiple learning difficulties for an average of £30,000, compared with £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.
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.
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.
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.
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.