Fifteen years ago, when our son James was three, my family was hit by a sudden realisation. I was in my mid-thirties; it was then, looking back, that I belatedly did my final bit of growing up.
At that point my partner and I had a few quiet concerns about James’s development, to do with his speech, an occasional sense that he seemed distant and withdrawn, and things that seemed innocuous but troubling: his habit of reciting scripts from his favourite kids’ TV shows, and flapping his hands when he was excited. But when he started at a new nursery, everything became clear. The staff told us we should get him “checked out” and mentioned autism, whereupon we endured a lonely autumn full of appointments with experts, half-eaten meals, and a mounting sense of dread.
We got his diagnosis a week after the Christmas of 2010, but we already knew that without a fight, any help it might unlock would be minimal. One of the encounters I remember most vividly from this time was with a weary-looking NHS paediatrician, whose parting shot spoke volumes: “Give it time, and then we’ll really know what we’re dealing with.”
We then began our long and difficult relationship with a part of the state that we knew nothing about. We soon found out that England’s system of provision for children classified as having special educational needs and disabilities (Send) was replete with baffling acronyms, phones that were never answered, and endless hidden trapdoors.
If James was going to go to a mainstream primary school, he was going to need one-to-one support, speech and language therapy, and much more besides. In those days, that meant applying for a legally binding document called a statement of special educational needs – which required our local council to agree to an initial process known as a statutory assessment. Our request was turned down flat, which meant an appeal to the official Send tribunal, and a grinding battle. On top of all our other everyday stresses, this was exhausting: it gave me six months of regular headaches, and an estranged relationship with sleep that took another year to put right.
I well remember the absurdity and occasional cruelty of it all. The first thing we received from the council was a pile of paperwork that was about five inches high, most of which was completely irrelevant to our case: a kind of epic bureaucratic brain-fart apparently aimed at warning us that the branch of government we were fighting had a bigger photocopying budget than we did.
And then things turned ugly. A parent’s natural instinct is to big up their child’s achievements – but when the council started scattering its submissions with plain falsehoods about James’s abilities, we had to push back. They said he could hold a pencil with the correct grip, so we had to say he couldn’t; they insisted he was able to work with other children, and for fear of weakening our case, we had to point out that this was wrong. It all deeply hurt, even though the council eventually agreed to most of what he required before a formal hearing. I write mostly for the Guardian and habitually vote Labour: it still feels strange acknowledging that ideas about the dead hand of the state and the awfulness of bureaucracies often ring true, but they do.
I have now written a book about James. It is really a story of joy in difficult circumstances: much of it centres on his deep relationship with music – he plays the keyboards and bass, has perfect pitch, and is obsessed with the Beatles, Kraftwerk and the Clash – and how it has connected us, and opened up the world to him. But there is another undercurrent in our lives that the book describes. It is in the nature of Send parenthood that you exist in a state of borderline paranoia: because local austerity is entering its 15th year and special needs education is in crisis, when our landline rings or an official-looking letter comes through the door, we always fear the worst.
As any Send parent will know, those anxieties are an in-built feature of a system that was radically changed just over ten years ago. Not long after it took office in 2010, the coalition government led by David Cameron and Nick Clegg announced that it would transform the existing Send system, with some seemingly good intentions: most notably, replacing the statement of special educational needs with new education, health and care plans (EHCPs), replacing rights that ended when children left school with entitlements that could extend from birth to the age of 25, and retaining the accountability enshrined in the Send tribunal. New reforms, said ministers, would “make the system less stressful for families and less costly to run”; the aim was “to give parents more control”.
But once the Children and Families Act of 2014 was passed, everything began to fall apart. At the Department for Education, Michael Gove had successfully been pushing an approach based on old-fashioned discipline, competition driven by league tables, and the all-round importance of “attainment” – which, to many Send parents, did not sound like it would create a welcoming environment for the kids the reforms were meant to help. The government, moreover, had promised to “end the bias” towards including disabled children in mainstream education – a policy authored by Cameron himself, thanks to his experiences of parenting his son Ivan, who had been born with cerebral palsy. It was obvious where all this would lead. In the face of warnings about segregation, between 2012 and 2019, the number of children with special needs in English mainstream schools fell by a quarter, while the number attending special schools increased by nearly a third.
Councils already reeling from George Osborne’s programme of austerity now faced rising bills. Many families could only find special school places far from where they lived, which sent transport costs soaring. Because local authorities couldn’t cope with mounting demand for non-mainstream schooling, private firms often filled the breach, demanding exorbitant fees. To take one ludicrous-looking example among many, the Pontville School, a specialist setting in Lancashire for children who need help with “speech, language and social communication”, is owned by a subsidiary of Abu Dhabi’s second-largest sovereign wealth fund, and now charges councils up to £116,000 a year per pupil.
When it came to the Send children in mainstream schools, there was a similar sense of a failing system leading to skyrocketing costs. School budgets were being squeezed, so some of the education system’s most dysfunctional aspects – such as the fact that pay for teaching assistants remained so miserly, leading many to quit their jobs – were left untackled. Help for many Send children is necessarily informal and ad hoc: support with reading or maths, or work on behaviour, that may be needed for a while but can then recede. But as this kind of provision fell away, teachers and parents were left with no option but to try to secure the dependable help and legal guarantees that come with EHCPs. This is part of the reason why, since 2015, the number of children councils have issued these plans to has increased by nearly 140 per cent, to around 575,000, which has entailed even more extra spending. Cuts, it turns out, can have very expensive consequences.
After the pandemic arrived in 2020, the Send system began to buckle, thanks to needs that were ignored or underestimated during the UK’s lockdowns, and an increase in what is officially called social, emotional and mental health issues. By then, the government had increased the funding of Send provision. But the mess was becoming impossible for ministers to cope with: as with so many of the previous government’s disasters, it was largely left for the next administration to deal with.
Rachel Filmer lives in Poole, in Dorset, one of scores of places in England where the local council is on the brink of effective bankruptcy, and many of the people who depend on its services now live in a state of constant anxiety.
She and her husband are the parents of eight-year-old twin boys, who are both autistic and non-verbal. They received their diagnoses six years ago, and set out on much the same arduous journey that we endured to get James the help he needed. Her sons are no less complicated than any other children. One of them is hyperlexic, a condition manifested in precocious reading and spelling abilities, and an obsession with letters and numbers. From an early age, he and his brother were also accomplished problem-solvers. “I’d put the snack that they wanted up on a shelf and they’d go and find a stool, and climb it and they would get it. Or I’d put them in a playpen, and they’d work together to rock the sides of it to open it up and get out.”
Soon enough, her council provided each of the twins with an EHCP, which is meant – in theory, at least – to set out the provision a child needs, beginning with an appropriate school. “At first the local authority wanted to send them to a mainstream school,” she says, “and I was like, ‘They’re completely non-verbal.’ So then they said, ‘OK, we’ll send them to a school for profound and multiple learning disabilities and physical disabilities.’ And I said, ‘Well, that’s not appropriate either.’”
She decided to take her case to the Send tribunal, which entailed long months learning the relevant legal skills. “I was terrified,” Filmer tells me. “My doctor had to put me on sedatives. The council had an external law firm handling their cases and I was getting the most aggressive, brutal emails from their solicitor all the way through, telling me that I had no case, and I was going to lose and I was wasting their time. It was awful.”
The hearing, which took place online, stopped on its second day. At that point, the council conceded the case, and the twins started at the school their parents wanted a week later: a setting specifically for autistic children, run by a charity. Her sons now both use augmentative and alternative communication (or AAC) devices, allowing them to vocalise their needs and wants by typing. “They love school,” says Filmer. “They’ve learned so much.” The victory she won is one small part of a much bigger picture: the only sure route to the right help, it increasingly seems, lies in battling officialdom. Between 2023 and 2024 alone, the increase in appeals to the Send tribunal was 55 per cent. In the course of that year, 99 per cent of cases that went to a full hearing were found in favour of parents.
Filmer is now part of the small group of people who run Special Needs Jungle, a news and information service for the parents of Send children that caters to a huge online constituency. When it became clear that her local council – Bournemouth and Christchurch, whose spending on special needs education had led to a deficit on its education budget of over £60m – was considering striking a deal with the previous government that would have meant drastic cuts spread over 15 years, she was centrally involved in organising local street protests and petitions.
That plan was abandoned, but for her and her fellow activists, there are now much bigger fears. After all those years of failure, the government says it wants to get to grips with the Send crisis. There is talk at the top of “sweeping reform” and “complete recalibration”. This could be one of this year’s key political stories, partly because it symbolises a familiar tension: between human rights and needs, and the government’s drive to save money.
In 2020, as spending on special needs education continued to balloon, the local Send deficits that councils were amassing became subject to a desperate “statutory override” that kept them off official balance sheets. Those deficits are scheduled to come back next year, when they may total as much as £5bn. At that point, as many as 60 English councils will face insolvency – and, unless she either fills the gap in the meantime or extends the override, Rachel Reeves will face deafening demands to effectively rescue English local government, which is some token of how significant the Send crisis is.
Predominantly on the right of politics, there has been a wretched kind of response to all this. If provision is crumpling, some people think the best answer is to dispute the needs that the state cannot meet, using the kind of language that defines the so-called culture wars.
When she was running for the leadership of the Conservative Party, Kemi Badenoch’s campaign put out a pamphlet that seemed to suggest that kids with what she called a “neurodiversity diagnosis” – something that doesn’t actually exist – are given unfair advantages: “If you are a child, you may well get better treatment or equipment at school – even transport to and from home.” The general problem, it suggested, was “a narrative built on fragility and medicalisation” instead of “building resilience”. The pamphlet also said that diagnoses of autism, ADHD, dyspraxia and other neurodivergent conditions had been accompanied by “an expansion of the numbers and the powers of the bureaucratic class”. Since 2012, the number of people employed by England’s councils has been reduced by 31.5 per cent, which is one of the reasons so many Send parents spend much of their lives waiting for emails and phone calls that never come.
Poisonous misapprehensions about the world of special needs are now part of the crisis. There is a common belief among some politicians and newspaper columnists that EHCPs are “golden tickets” that guarantee luxurious provision, rather than fragile documents that are often barely implemented without a struggle. There is much talk in the culture about “overdiagnosis”, which goes beyond questions about mental health into neurodivergence. But that view omits two things: decades – centuries! – of under-diagnosis, and something all Send parents understand: that as the rush for EHCPs also proves, when you are dealing with broken systems, it’s imperative to amass as many official documents and credentials as you can.
Late last year, Keir Starmer said that the Send crisis was “the issue that has been raised at prime minister’s questions with me more than any other”. The Education Secretary, Bridget Phillipson, wants to tackle it by reversing the approach taken by most of her Tory predecessors. She talks about bold reform based on the idea of “inclusive mainstream”, but any specifics about how a different system would work have yet to come.
That has left a vacuum partly filled by briefings from other parts of government and the umbrella groups that represent councils, which have been putting out reports and press releases that petrify parents. In the “short to medium term” the Local Government Association wants to make the refusal to assess a child for an EHCP no longer appealable – which, for my son, would have spelled disaster. A report co-commissioned by the same organisation recently proposed “independent, non-judicial mechanisms for dealing with disagreements about decision-making”, a polite way of proposing the tribunal’s abolition, which would silence parents at a stroke. Using the tribunal is arduous and exhausting – but it represents at least some level of accountability.
Many Send specialists are in favour of a very different solution – but with the Treasury set on new public-sector cuts, it might sound almost utopian. The best approach, they say, would be to write off local Send deficits in the way councils want, but also to protect existing rights, properly fund informal provision in mainstream schools, and then wait for the number of EHCPs and the bill for specialist schools to gradually come down. That would involve spending more money in the short term to save it in the future – but that is the kind of suggestion that chancellors of the Exchequer always hate. With echoes of the government’s plans to drastically cut access to disability benefits, the more likely outcome is that rights will be snatched away today, with a promise of better provision that may or may not materialise tomorrow.
Among the people most closely following this unfolding story are the small team behind Special Needs Jungle. The site’s founder is one of the Send community’s battle-hardened veterans: Tania Tirraoro, the mother of two grown-up children diagnosed with autism and ADHD, who is herself on the spectrum. She started Special Needs Jungle as a blog in 2008, and then helped it grow into what she calls a “little specialist newsroom”, which exists “to help parents understand the system and shine a light on the things they need to know that they’re not being told.
“I’m reliably told that people in the education department read SNJ religiously,” she tells me. “And a little trepidatiously. We’re the only people who publicly hold them to account.”
She has a keen sense of what might soon be at stake. “Every child deserves justice, and the education that’s best for them. And the tribunal is there for that. It applies the law, as agreed by parliament. What we hear is the government aren’t going to [merely] tinker around the edges, and that’s terrifying. Will they stop entitlements at 18, maybe? I’m also very worried about that.”
Our son James is now exactly that age. His statement of special educational needs has long since been replaced with an EHCP. Four years ago, when it became clear that a mainstream curriculum centred on GCSEs had vanishingly little room for him, he started at an autism-specialist school; in September, all being well, he will enrol at a local college specialising in living skills, and gentle introductions to various kinds of work. The important thing is to keep him learning for as long as we can. Soon enough, our family will collide with yet another big milestone: the end of his education, and a new life that will probably be partly defined by the creaking machine that delivers adult social care.
James is as full of joy and fascination as anyone else; what I constantly worry about is such raw humanity being crushed by an administrative machine so dysfunctional that while it is both overspending and frantically cutting, it never seems to really connect with the people it is meant to help. Send parents know that feeling as a matter of everyday experience. But most of us are also used to battling and struggling – with both the people who don’t return our calls and make us fill in endless forms, and Whitehall and Westminster.
If special needs reform goes the way Tania Tirraoro and her colleagues are expecting, they will draw on that spirit. “Don’t take away children’s rights,” she says. “Because if you do, you will have a hell of a fight on your hands.”
“Maybe I’m Amazed” by John Harris is published by John Murray. Buy the book
[See also: The Yoko Ono problem]
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This article appears in the 26 Mar 2025 issue of the New Statesman, Putin’s Endgame