Many parents of disabled children are being forced to pay thousands of pounds a year out of pocket because the special educational needs and disabilities (SEND) system is failing to provide adequate support, new research has found. Children who need additional help in education can access it through an Education, Health and Care Plan (EHCP), but long delays, inconsistent decisions, and plans that do not fully meet needs are leaving many with complex needs without proper provision, according to disability charity Sense.
Natalie, a 38-year-old mother from the West Midlands, said securing the right educational support for her seven-year-old son Azuriah has often left her struggling to pay bills, despite having an EHCP in place. Azuriah is autistic, non-verbal, has global development delay, and was recently diagnosed with ADHD. To care for him, Natalie works only part-time as an HR adviser. Her son started at a special school a year late after turning down a place at a school too far away. Three years on, she pays £140 a week (£7,280 a year) for four hours of therapy to develop his communication and social skills, as his EHCP does not fully meet his needs and his school delivers little speech therapy.
Natalie said: “For our family, the budgeting never really ends and I still feel like I am failing Azuriah. He’s non-verbal and ideally, he would have speech therapy on top of the therapy sessions I already pay for – but that could easily cost more than £10,000 a year and I can’t afford that. Looking back, I can see paying for the extra therapy has helped Azuriah but I shouldn’t need to do this alone. He has an EHCP and, to me, this is basic support that should be offered in school.” She added: “Sometimes it feels as if you need to be rich to be disabled. The SEND reforms need to make sure the system is properly funded.”
There are around 482,000 school children with EHCPs in the UK, rising to 639,000 when including those up to age 25 or not in school. The number of EHCPs has increased by 166% between January 2015 and January 2025. As demand grows, many councils have raised concerns about unmanageable costs, prompting the government to announce it will write off 90% of SEND deficits. The government has also indicated it will publish plans to reform the SEND system in a schools white paper expected early this year.
Sense’s survey of 1,000 parents, carried out by Censuswide, found that many families are bearing a huge financial burden. James Watson-O’Neill, Sense chief executive, said: “It is unacceptable that so many families are being forced to shoulder such a huge financial burden because an underfunded SEND system is failing their children. Parents are doing everything they can to stop their children from falling through the cracks. Too often, families are left with an impossible choice: pay out of pocket for support that should be guaranteed by law, or watch their child go without.”
A Department for Education spokesperson said: “We are determined to seize this once in a generation opportunity to reform the broken SEND system and transform life chances for children with additional needs so every child can thrive in a school that meets their needs, close to home. For too long, families have been forced to fight for support that should be automatic.”
