‘Beyond worried’: the families waiting to hear how Send reform will change their lives

Already struggling to get help, families with children with special needs are concerned changes could make things worse

At the age of 12, May Race’s son Joseph spends almost all of his time in his bedroom, too anxious, burnt out and – she says – traumatised even to join his parents and older brother downstairs most days. Joseph no longer leaves the house at all.

He is autistic and has dyslexia and attention deficit hyperactivity disorder (ADHD). His autism is of a type known as pathological demand avoidance, or PDA, which can make the ordinary demands of everyday life feel overwhelming and impossible to cope with. Since he was eight years old, he has rarely been able to go to school. Today, he doesn’t attend at all, and is too unwell even to meet with professionals who may be able to help him.

Joseph is funny and creative and incredibly kind, says his mum, and had been capable of great friendships while he was still able to meet his peers. But somehow, her adored boy is now unable to engage with the world – and the educational and special needs networks that are supposed to support him seem powerless to help.

The Send (special educational needs and disabilities) system in England, says his mother, has failed to help Joseph, who lives near Winchester with his family. In fact, she blames what she describes as its lack of resources, flexibility and understanding for making him more unwell, not less.

It is a system that, everyone agrees, desperately needs reform – from the schools struggling on strangulated resources to support soaring numbers of children with extra needs, to the hard-pressed professionals juggling huge caseloads, and the local education authorities that have built up perilous levels of debt trying to pay for it all. On Monday, the government will announce its plans for a comprehensive overhaul of special education in England that it says will make it quicker and easier to access appropriately supportive school places – though the urgent need to get costs under control is certainly another motivator.

If only Race, and many thousands of other families, felt so confident of improvement. “The system does need reform – because the journey we have been on for years has been absolutely awful,” she says. “And I see it around me all the time, among many, many other families. It is a crisis for these children.” Of course she hopes that the government’s imminent white paper could improve things. “But – and it’s difficult to believe – it could also make things worse.”

More than 1.7 million children in England were classed as having special educational needs in the academic year 2024-25, a vast rainbow that ranges in need and severity from physical disabilities to learning difficulties to neurodivergent diagnoses such as autism and ADHD, and mental health conditions. (Education in the other UK nations is devolved to the Scottish parliament and Welsh and Northern Irish assemblies.)

Though all these children are different, what huge numbers of their battle-scarred parents share are bruising tales of the struggle to secure diagnoses for their children, individual care plans to guarantee services for them, and appropriate school places where they can thrive.

Their anxiety over recent months, as publication of the white paper has approached, has been acute.

Children who already have specialist places and specified support will not lose them under the changes, the education minister Georgia Gould, said last week, telling the Guardian she wants to give mainstream schools the resources to support more children with special needs, meaning fewer of them will need education, health and care plans (EHCPs), which specify the specialist support a child must be provided with by their council.

But with many families relying on these detailed, personalised and (crucially) legally enforceable documents as the only guarantor of support, many fear any move to reduce their number could also strip away their children’s safety nets.

Joseph’s story is far from typical, but elements of his parents’ ordeal will be familiar to many others. He first started struggling with school in his reception year, aged four, developing tics and having severe meltdowns at home – but it was not until almost four years later that he was referred by his school to children’s mental health services. It took 10 months before the family even got confirmation he was on the waiting list.

They had years of traumatic mornings, often physically carrying the distressed little boy into school. By the time he was eight, Joseph was unable to leave the sofa, suffering from what the family now understand as autistic burnout, or a state of severe mental, emotional and physical collapse caused by the long-term stress of trying to navigate a neurotypical environment.

Securing a formal autism diagnosis, an EHCP and a secondary place at a specialist independent school – the only one identified that said it could meet his needs – was gruelling, she says: “I’ve suffered trauma too.” Joseph’s complex needs are such that even that school wasn’t able to meet them, however, and he now has no school place at all.

Even if major reforms are coming, she is worried about how quickly change can be implemented. “It concerns me that the urgency of [the crisis] isn’t being acknowledged. There are so many children who are now in a really bad way because the system has been broken for so long.”

Other parents tell very different stories, but share similar apprehensions about the future. “I think there is an assumption that children like Kyllian will be fine, because he already has a place in special school,” says Becky, a mother from Nuneaton in Warwickshire of her six-year-old son who is blind and has cerebral palsy, epilepsy and learning difficulties. “But actually, he’s not fine, because he’s only legally entitled to that place because of what’s named on his EHCP.”

Though some of her “loving, cheeky, tactile” son’s disabilities were clear from birth, and the family were under the care of many professionals, Becky says some of his needs are now supported only because of her own research – “talking to other people, staying up late at night writing letters, photocopying documents” – her dogged refusal to accept school places that she felt were inappropriate or unsafe, and the advice of agencies such as the disability charity Sense .

An early years classroom was on an upper floor despite Kyllian’s limited mobility, says Becky (who asked not to publish her last name), and even with a one-to-one support worker assigned to him, she felt he was barely integrating with the other students in his mainstream nursery class.

She visited several schools, sometimes touring them in tears because she knew Kyllian couldn’t cope there. Eventually, after what Becky describes as a period of “arguing the toss” with her local authority, Kyllian was offered a place at a specialist school with a dedicated vision support unit, where “for the most part, he’s a really happy little boy”.

Even as the mother of a child with very clear needs, however, Becky says she worries about funding for Send school transport – whose soaring costs have placed intense pressure on council budgets. Because of the risk he could have an epileptic seizure, Kyllian is unable to travel to school by minibus, so his mother receives funding to drive him the 6.5 miles each way.

Will a squeeze on transport funding put his more distant school place at risk? “There’s a lot of fear in the Send parent community,” she says. She feels “up and down all the time, every day, about what the future holds”.

In many ways, Cheryl Garner is very happy with the schooling of her five-year-old daughter, Millie (not her real name), in the East Riding of Yorkshire, where she attends a specialist unit attached to a mainstream primary school. This is a model that ministers have indicated will be rolled out more widely under the new proposals – and for Millie, who has profound and complex special needs including global development delays and non-verbal autism, it has been “absolutely brilliant and amazing”, says her mother.

“She loves school, she loves the teachers. She loves the fact that she gets to paint and play and the environment’s lovely,” even though “I don’t know if it is a long term solution and this will always benefit her.”

But Garner says she is “beyond worried” about what changes to the system could mean. After initially being given a place in a mainstream nursery (in another borough) that was not appropriate to her needs, Millie spent 10 months at home and out of education before her current school place could be found. (All three of the women interviewed for this article have been forced to give up their careers to become full-time parent carers).

Because four local schools said they couldn’t meet her needs, Millie travels 15 miles each way in a taxi every day. When their local authority, eager to keep costs down, changed providers, the new driver lacked training and Millie was unable to use the service, according to her mother, meaning another period stuck at home, out of school.

Though Millie’s autism was identified quite young, some of her other conditions have only become apparent as she has got older, and Garner says she is very concerned by any change that would make services more restricted based on diagnoses – when these can often be very hard to come by.

She believes her daughter has dyspraxia, for instance, which affects motor skills and coordination, and which could help explain Millie’s inability to climb the stairs to their first-floor flat. Garner, a single parent, has to carry her up and down each day, and they are on the council list awaiting rehousing.

Garner has been told, however, that there is no way locally for Millie to get a dyspraxia assessment on the NHS, and she can’t access the mobility support she thinks Millie needs without a diagnosis.

“So we are saving up the money to pay for it privately, before we can put her on the waiting list. It’s a bit daunting and I find it really unfair – because she’s five.”

Nobody pretends any of this is easy to solve, least of all for the local authorities who are legally obliged to meet the needs of children with special needs.

A spokesperson for Hampshire council, Joseph’s family’s local authority, said demand for EHCPs had risen by 243% in the borough since 2015. “Coupled with growing complexity in children’s needs, this makes finding available and suitable placements increasingly challenging.

“However, we always endeavour to achieve the very best outcomes for individual families and to ensure that children and young people with Send receive the right support in the right place.”

Victoria Aitken, East Riding of Yorkshire council’s cabinet member for children, families and education, said the council worked with families “to ensure that every child gets the support in the setting they need, no matter where they live or what challenges they face”. But noting that East Riding’s funding is £18m below average for local authorities, she added: “We want to see bold and brave education reforms that will deliver lasting improved change and fairer funding for schools and families.”

As for Joseph, his mother remains hopeful that, given time and patience, he can live a fuller life, even if mainstream schooling is unlikely to be part of his future. She asked her local authority for funding for an out of school education package but says what the council offered would not have worked for Joseph. They have appealed, and have a hearing date in March 2027.

Her son’s story, she says, has brought anger, trauma and grief. “I feel really sad that that our society can’t support neurodivergent children better. Mostly I feel sad that Joseph is still so unwell, and that he’s been made unwell as a consequence of the system being so broken.”