Within a few hours of talking to two well-placed campaigners, the extent of the difficulties facing children with special educational needs and disability (SEND) in the United Kingdom begins to become clear.
Message after message hits my inbox. Parents from across the country tell their horror stories. They talk about children trying to take their own lives, they talk about considering taking their own lives themselves, they talk about the strain and toil that comes from fighting a running battle with local authorities facing budget cuts for years on end.
What becomes clear too, is just how often the law is being broken. Children with SEND have to be provided with an education, health and care plan (EHC plan), a legal document that describes their special educational needs, the support they need and the outcomes they would like to achieve.
This support will obviously vary widely, depending on the kind of learning difficulty and / or disability the child has. It can mean everything from particular kinds of therapies like speech and language, to quiet rooms at schools. Section 37 of the Children and Families Act 2014 stipulates that the local authorities must make sure EHC plans are prepared for those that need them and that once they have been prepared they “must maintain the plan”.
In 2018, the House of Commons Education Committee produced a report entitled, ‘Forgotten children: alternative provision and the scandal of ever increasing exclusions’. This found that “too many pupils are failed by the system and they are not receiving the education that they deserve”. It found also that there was “significant evidence and concerns about the over-exclusion of pupils”, as well as an “alarming increase in ‘hidden’ exclusions”.
Based on the current state of affairs, the report’s authors put forward a series of suggestions, two of which jump out: “Schools should not rush to exclude pupils” and “Parents deserve more information when their children are excluded”.
openJustice spoke to parents who have children who have not had EHC plans prepared for them, who have not had those plans maintained and who feel precisely that the schools their children have been in have rushed to exclude them and that they were then given very little information about why that had happened.
As David Wolfe QC, a public lawyer at Matrix Chambers, puts it: “There's a lot of gatekeeping. Local authorities often won't accept a diagnosis without the clearest of evidence. Or, if they do, they will sometimes talk down the amount of help needed. So, they might accept that a child has autism but not provide all the suggested support, or express it in illegally vague ways. For example, half an hour of speech therapy can be changed to speech therapy 'as required'.”
One father said his son had been illegally “off-rolled” from his school and that for the last six months he had been stuck in limbo, given little information about what would happen next. Another parent found their son excluded from school after six weeks there, even though he was being bullied every day on the school bus, a situation the school described as not being their problem.
Off-rolling is described by the government as “the practice of removing a pupil from the school roll without using a permanent exclusion when the removal is primarily in the best interests of the school, rather than the the best interests of the pupil. This includes pressuring a parent to remove their child from the school roll. While it may not always be unlawful, Ofsted believes off-rolling is never acceptable.”
One consultant working with children’s service providers, who has a long history of working on SEND cases, said that off-rolling disproportionately affects children with SEND and is used by “the local state to avoid its minimum statutory requirements for disabled children and families”. Off-rolling is part of a wider system and is a response by councils to systemic pressures in education like a lack of funding, increased class sizes and a paucity of support for children with complex needs.
Parents have found themselves on the hard end of cost cutting prompted by central government cuts and are left learning to try and navigate a labyrinthine system in which outsourcing and privatisation has left it increasingly hard to tell who is responsible for what and in which their children can be palmed off on charities and private providers.
Once considered a protected realm, SEND funding has been hit by austerity. Last year, the think tank IPPR North found that funding for pupils with SEND had been cut by 17% across England since 2014, with cuts in the north worst, at 22%.
Schools and local authorities are facing a £1bn shortfall and, say the National Education Union, “more than one million children with special needs don’t have adequate funding to help them access their education.” On top of this, David Wolfe says, “the tactic is to hammer families with bureaucracy and leave local authorities on the frontline.”
Pupils with SEND can find themselves excluded and shunted into the banally dystopian spaces of our society. The father of John, a 12-year old boy, told us that for a year, the only education he was getting was just over an hour of one-to-one mentoring in a Costa coffee in Exeter. The sessions took place once a week, and then twice a week. There were no computers and no coursework. The service was provided by a private contractor called 1-2-1 Mentors, which was employed by the academy trust that runs the school John had been at.
John has special educational needs but he and his father Fran have been locked in a struggle with Devon County Council for almost three years, with the local authority refusing to sign off on assessments, trying to push John into the school of their choice, unlawfully removing him from the register at another school, illegally cancelling a meeting with an educational psychiatrist and then, John’s father Fran says, lying about this in court – something that was later explained as a “miscommunication”.
Two weeks ago, Fran launched a group for SEND parents in Devon. It already has 40 members who are willing to take Devon County Council to court. They’ve nicknamed the group “Sad Parents Devon”. “All of them feel they have been illegally treated”, Fran says. “All of them feel like the authorities don’t give a toss”.
Amanda Messenger, who lives in Hampshire, has two autistic sons, 20-year old Cameron and 17-year old Alex. She told us that her local authority had treated her unlawfully “numerous times” and that she had spent her sons’ lives in and out of tribunals.
When Alex was moving into sixth form – in the same school – the local education authority sent Amanda a completely new EHC plan for him. “His plan states that he needs all sorts of therapy”, Amanda says. “The new plan we were sent stripped all of his therapies away.” Amanda went to mediation. She was told that the local authority had taken out Alex’s speech and language therapy because “no college would provide it”.
Amanda, who describes herself as a “tenacious bitch”, presented the authority with two choices: either they put all the necessary therapies back into her son’s plan, or she would take them to tribunal and ask for a much more expensive package of assistance for Alex. In that case, she says, “I’m not going to expect a Mini Traveller, I’m going to go for the Rolls Royce”.
The local authority backed down and Alex was returned to his original plan. But, as Amanda notes, “they don’t always back down. They are always calculating the loss”.
When her eldest son Cameron was ten years old, Amanda went to the tribunal. Cameron had an “amazing psychiatrist” who was about to retire and who told Amanda that he had been put under pressure to change her son’s diagnosis. This was a direct order from a local authority SEND officer and it impressed upon Amanda the power of the system.
The psychiatrist came to the tribunal, which Amanda won. “What if he’d been a young psychiatrist with more to lose, someone who would have been susceptible to the pressure”, Amanda asks. “Cameron wouldn’t have gone to a specialist school, he wouldn’t have got anything approaching the kind of education he needed”.
For Amanda, as for pretty much anyone on the wrong side of budget cuts, “it’s all about money. It’s about shoehorning children into cheaper places. But they’re also wasting so much money because they are taking parents to tribunals unnecessarily.”
There is a calculation in this though, said the consultant working with children’s service providers. “Local authorities know that if they target vulnerable, low-income families then their right to recourse is limited, particularly given the decimation of legal aid and a paucity of the kind of advice many families crave”, the source said.
As David Wolfe, the QC, puts it: “Children with special needs are, however, probably the most legally protected people in our society, but there are still an awful lot of parents who don't know their rights, which contributes to a hefty skew in favour of middle class kids.”
Lawyers like Wolfe will usually, he says, only ever end up seeing cases in which families have got to appeal, and those families are usually ones with adequate financial resources.
There are, however, signs of hope. SEND action groups have sprung up across the country, with parent-campaigners like Amanda, Alicia McColl in Surrey and Gillian Doherty of SEND Action using their years of hard-won knowledge and experience to help other parents like them.
In the courts too, a fightback has begun. Anne-Marie Irwin was the solicitor who brought a landmark legal challenge against the British government’s funding policy. For the first time, allegedly unlawful decision making by local authorities relating to SEND was being traced directly back to its source in central government underfunding.
In the two day hearing in June 2019, the court was told that the Chancellor and the Secretary of State for Education had acted unlawfully when setting the national budget in October 2018 and that the allocation for children and young people with SEND was “manifestly insufficient” in the face of clear and incontrovertible evidence of a “substantial national shortfall”.
The case was brought on behalf of three families of children with SEND and was supported by many others. The families lost the case but, says Irwin, “in many ways, we felt it was a success because the government was required to provide evidence about how they had taken their decisions. It was a packed court and the publicity was extraordinary”.
Local authorities make cuts in their services because they don’t have sufficient funding and for lawyers like Irwin, “it can be very frustrating to bring cases against local authorities when central government is the issue”.
The court found that the case – that central government was the cause of the problem – was arguable. “On a different set of facts, it’s entirely possible that a case like this would succeed”, says Irwin.
Bristol City Council provided Irwin and the court with a statement saying it couldn’t meet its legal obligations to SEND children under the current funding arrangements. It is far more common, though, for local authorities to say that they have to make cuts but to stop short of saying that they are being forced to act unlawfully because of those cuts.
Many campaigners now argue that the necessary next step is for local authorities to do their version of declaring bankruptcy – issuing a section 113 notice. Or at least admitting that budget cuts have led to unlawful decision making at a local level (and this is not just happening in SEND cases but in a variety of contexts – see other openJustice articles on the subject).
Meanwhile, the picture SEND parents’ paint of the situation remains one of perpetual conflict. “I’ve been fighting for 15 years”, Amanda says. “The stress level is unbelievable when you represent yourself at tribunals.”
She helps other parents of children with SEND and says, with characteristic candour, that if she had a 5-year old child today, she would be “near to slitting my own throat. The traumatic effect that it’s had on my life is unbelievable. You’re fighting everyone. There are several cases of children killing themselves.”
During the course of this article, I spoke to and communicated with more than ten parents of children with SEND. Mothers and fathers, every one of them was a single parent. “The father of my children couldn’t stand the strain of it”, Amanda says. And so he left. “I don’t hate him for that. I can see why you would run. I had to learn how to do it all.”
These days, she tells some families they would be better off homeschooling their children. The battle to get them the education they are legally entitled to is simply too hard.