It’s time we stopped blaming children and their families. (Credit: Wiktor Szymanowicz / Getty images)
As the Education Secretary, Bridget Phillipson, prepares to deliver the Government’s long-awaited white paper on Special Educational Needs and Disabilities (SEND), the siren calls for something to be done about the costs of educating the nation’s disabled children have become ever louder.
Days after the Local Government Association warned that eight-in-ten councils could face bankruptcy due to the rising costs of SEND provision, the Government announced it would spend £5 billion canceling their debts. This may ease council fears of financial calamity — but only adds to the narrative that costs have spiraled out of control. The Times was swift to pin these costs on “sharp-elbowed” parents in wealthier areas, reflecting a view that is popular in the Right-wing press and eagerly parroted by opportunistic politicians: that Britain is facing an epidemic of “over-diagnosis” thanks to some noxious combination of snowflakery, entitlement and greed. Meanwhile, parents, clinicians and educationalists insist that the needs of disabled children and young people are real — and to blame them for the breakdown of a system that is, in fact, woefully failing them is not merely unfair but a callous misdirection.
The debate — if that’s not too generous a term — has been cruel and at times exhausting. As the father of a young man (Joey, aged 29) with no speech, severe learning disabilities and intractable epilepsy, it feels personal. What both sides can agree on, I hope, is that the current system is broken and needs urgent reform. But my fear is that a generation of children is about to lose their legal right to an education. Given how hard the struggle to gain that right has been, this would represent an enormous backwards step for equality in this country.
***
It is worth remembering how we got here. The Provençal doctor Jean Marc Itard (1774-1838) can claim to be the founder of special education. Hearing of a non-verbal, feral 11-year-old boy who had spent his childhood in the woods of Aveyron in southwest France, Itard spent six long years trying to teach him speech and language, and rudimentary social skills. He eventually gave up on Victor (as he called him) as a lost cause — but Itard’s account of his systematic, if sometimes brutal, methods provided a template for the many approaches that followed.
By the mid-19th century, the Enlightenment dream of “educating the idiot” had given way to greater pessimism. Confining thousands of children with learning disabilities in asylums and so-called “colonies”, far removed from mainstream society, became the norm. It was also in this period that terms such as “idiot”, “imbecile” and “moron” were first used in this context. By the early 20th century, the British eugenics movement enjoyed the support of many progressive educators, intellectuals and politicians. The Nazis were so disgusted by these so-called “useless eaters”, whom they dismissed as a drain on the public purse, that they murdered tens of thousands of them.
It is often assumed that the defeat of Hitler’s Germany ushered in an assertion of universal human value. But the 1944 Education Act, one of the most cherished achievements of the postwar welfare state, divided children into two distinct groups: the “educable” and the “ineducable”. Schools for the “educationally subnormal” were established for those on the borderline, but a small cohort was rejected as not worth the trouble. Their destiny was to live in overcrowded “long-stay hospitals” for the rest of their lives, ignored and almost entirely forgotten.
It took until 1967 for this practice to be challenged, when the Austrian refugee and special educationalist Stanley Segal wrote his remarkable polemic, No Child is Ineducable. This paved the way for the 1970 Education (Handicapped Children) Act, whose chief objective was to bring educational segregation to an end. Progress was slow, however, and Segal was compelled to produce a follow-up in the 1980s which challenged politicians to deliver on what they had promised. But a parliamentary report as late as 2009 declared that the system was still “living with a legacy of a time when children with Special Educational Needs were seen as uneducable”.
Furthermore, the 1970 Act didn’t resolve how these promises should be delivered in practice. An inquiry chaired by the philosopher Mary Warnock recommended that the negative concept of educational “handicap” should be replaced with the more generous catch-all, “special needs”. The resulting 1981 Education Act insisted on support within mainstream schools wherever possible, with special schools reserved for the small number of children with defined disabilities.
New Labour stressed the ideal of “inclusion”. Thus, the 2001 SEND Act stipulated that children with learning disabilities should enjoy the same educational opportunities as their non-disabled brothers and sisters — with “reasonable adjustments” made to ensure that they could, for the most part, attend mainstream schools. The Act outlawed educational discrimination and launched the system of SEND Tribunals, whereby parents could appeal against decisions made by the education authorities.
This rare moment of optimism was not to last, however. Complaints mounted that children with learning disabilities were holding back their more able peers, and David Cameron’s coalition government set out to “end the bias” towards inclusion. The result was the 2014 Children and Families Act, a carefully considered attempt to deliver a more holistic approach. One of its key innovations was the introduction of Education, Health and Care Plans (EHCPs), which were designed to offer a person-centered, joined-up description of a child’s individual needs and to specify the particular support that local authorities were legally obliged to deliver.
EHCPs were largely welcomed by parents and educators alike. In recent years, however, these documents have become increasingly contentious — described by some as “golden tickets”, a means of parents, especially middle-class ones, to “game the system”. Last year rumors abounded that EHCPs were going to be abolished altogether. We’ll see. However, limiting them to children with only the most severe and complex needs seems the most likely outcome.
All of this is taking place against a background where politicians increasingly cast doubt on the validity of professional diagnoses. Late last year, the Health Secretary, Wes Streeting, made his own position explicit, commissioning a review into the “over-diagnosis” of conditions such as ADHD and autism — lending credibility to claims that have more often been voiced on the Right. Streeting did, to his credit, later retract his claims. Nigel Farage — who wrongly suggested that GPs were responsible — argued that we are “massively over-diagnosing those with mental illness problems and other general behavioral disabilities”. Kemi Badenoch spoke of a cultural shift in which disabilities have changed from something “people should work on themselves” to “something that society, schools, and employers have to adapt around”.
The history of learning disability is riddled with similar anxieties, resulting from similar category errors. Thus, the rapid expansion in the early 20th century of the number of people branded as “feeble-minded” — a category that lumped together schizophrenics, depressives, alcoholics and unmarried mothers — directly fueled the proliferation of inhumane asylums and “mental defective colonies”. Indeed, the Edwardians spoke of such people as a “social menace”.
But the current rhetoric is something different. By denying the validity of professional diagnoses, a number of ignorant politicians and journalists have placed the blame for the cost of the SEND system on the young people affected, their parents and the clinicians.
***
Of course, behind all this, lurks the contentious question of funding. As the rising number of SEND diagnoses have placed budgets under extreme pressure, local authorities have discovered a range of money-saving loopholes — which turn out not to save money after all.
Thus, as the National Audit Office recently reported, £2 billion is spent every year on transporting disabled children and young people to school. But many local authorities are refusing to provide such transport to disabled children over the age of 16. This is because the 2015 legislation, which mandated education or training for all young people failed to update the guidance on SEND transport to include young people from 16 to 19. The result is that many cannot attend school unless their parents pay for taxis or can drive them themselves — often long distances to one of the small number of special schools in the country. One mother I know has had to find £400 per month to ensure that her 18-year-old disabled son can enjoy the same right to an education as his non-disabled peers. And she’s confronted every morning by the sight of half-empty minibuses driving disabled younger children past her house to school. Theory has trumped practice and families pay the price.
Resorting to such loopholes suggests that the oft-repeated commitment to equal rights in education is wafer-thin. Indeed, I’m told by sources familiar with the process that the panels who make the decisions about educational placements are urged by budget holders to turn down any option which costs more than the bare minimum. The result is predictable: vast sums of public money are squandered on legal services to fight parents at the tribunals which follow, with a 2023 report putting the figure at almost £80 million a year. This has led to a tragic breakdown in confidence between families and their local authorities, with the rights and dignities of disabled children betrayed yet again.
To add insult to injury, a recent investigation carried out by Isos, a research and advisory company, seemed to place blame for these problems on the growing number of disabled children and their “demanding parents”. As one commentator put it, the “research and recommendations appear to be aligned with the financial concerns of local government, rather than those of children and young people being let down”. It’s time we stopped blaming children and their families. It is, quite simply, a form of gaslighting.
The reality is that, as with so much in Britain, the SEND system has become tragically contested. Many local authorities are reluctant to issue an EHCP, or lack the expertise to do so properly. Writing one is in any case a tortuous process, requiring reams of expert evidence, with parents advised to describe their child’s disabilities in the most negative terms imaginable. Even when an appropriate EHCP is agreed on, success depends on securing not just a place at the right school, but also the vanishingly rare specialist intervention required: speech and language and occupational therapy, dyslexia support, and so on.
The irony is that the EHCPs are well-designed tools that identify individual needs and provide the legal framework necessary for addressing them. Crucially — and almost entirely overlooked amid the current noise — an EHCP describes more than just education, and includes health (“H”) and social care (“C”) needs. It provides crucial support for children from impoverished or troubled backgrounds as well as those with health issues. My Joey, who required a residential setting suitable for his intractable epilepsy, is one of those people who benefit from EHCPs. The crucial point is that every child is different and every child has different requirements. We can only deliver on the great ideal of “person-centered” educational support if we engage with the wide range of challenges that our children and young people face.
The EHCPs are not perfect and could be streamlined, but parents know that they offer the last legal bastion protecting the rights and dignities of their disabled children. The financial challenges faced by local authorities will not magically disappear if EHCPs are abolished. Scrapping them would not curb the rate of diagnoses either — it would simply serve to shoot the messenger.
It’s not as if parents of disabled children aren’t hard-pressed enough already. As Scope’s “Disability Price Tag” indicates, families with a disabled member have to find on average an additional £1,095 per month to achieve the same standard of living as non-disabled ones. In other words, the state is hardly keeping disabled children and their families in the lap of luxury.
What’s more, as a new report by the charity Cerebra has concluded, instead of receiving help, parents “face a relentless, hostile, and bureaucratic fight for basic support. They are met with disbelief, repeated assessments, and processes that leave them feeling blamed or broken.” Surely they deserve better.
Meanwhile, politicians who are concerned about the rising costs of educating disabled people should stop blaming the children — and start looking into where the money is actually being spent. Private finance has poured into the sector in recent decades, creating a highly profitable network of independent special schools, academy trusts and residential care settings. Senior management, property developers and shareholders have all benefited handsomely from the huge fees that they can extract from local authorities. This money could be used to make children’s lives better. Instead it is being extracted by a small army of lawyers, consultants and financiers. If there is a system that is being gamed, here it is.
***
Finally, we should consider a grim but significant statistic: the median life expectancy for a (white) man with learning disabilities is 63, compared with 81 for the general population. There are many reasons for this, but the dreadful consequence is that the vast majority of people with learning disabilities will never draw a state pension, receive winter fuel allowance or travel benefits, let alone incur any of the considerable costs incurred in health and social care by an aging population. It’s a brutal fact that short lives cost the state less money.
Meanwhile, every child, regardless of cost, regardless of ability, has a legal and moral right to an education. It is hard to imagine politicians questioning whether society can afford the £8,500 a year that, on average, we spend on non-disabled children, whatever their academic abilities. And so, the underlying question remains: are we prepared to grant children and young people with learning disabilities the same educational opportunities as their non-disabled siblings?
If the answer is “no” — if we conclude that some children are fundamentally “ineducable” — we must abandon our cherished notions of equality of opportunity and universal human rights. But if, instead, we insist that that all children have an inalienable right to an education, we must bring rationality, pragmatism and a renewed sense of shared humanity to ensure that every young person, whatever their differences, receives the support that they need, so they can thrive, grow and realize their potential. It shouldn’t be hard to figure out where to stand.