Many parents of disabled children are being forced to pay thousands a year out of pocket as special educational needs and disabilities (SEND) provision continues to fall short, new research has found.
Children who need additional support in nursery, school or college currently access help through the SEND system, with their parents applying for an Education, Health and Care Plan (EHCP).
But long delays, inconsistent decisions and plans that don’t fully meet needs are causing many children with complex needs to miss out, disability charity Sense has warned.
Mother-of-one Natalie, 38 and from the West Midlands, said securing the right educational support from her seven-year-old son Azuriah has often caused her to “struggle to pay the bills,” despite having an EHCP in place for him.
Azuriah is autistic, non-verbal, has global development delay and was recently diagnosed with ADHD. To ensure she can care for him, Natalie is only able to work part-time as an HR adviser in the health sector.
Natalie, 38, and her seven-year-old Azuriah from the West Midlands (Family handout / Sense)
Her son started at special school a year later than his peers, after he had already turned five, because they were offered a place at a school too far away initially and had to turn it down.
Three years on, Natalie continues to pay for four hours of therapy a week for Azuriah to develop his communication and social skills, costing £140 a week, or £7,280 a year. She claimed his EHCP does not fully meet his needs, with his school delivering little speech therapy, so she must fill in the gaps.
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 to help his communication and social skills – 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. With speech therapy, he started at his special school with that being in place as a basic but now it’s been cut back to almost nothing.”
Azuriah, 7, has an EHCP but mother Natalie says the support on offer at his school has been cut back (Family handout / Sense)
She added: “Our family has had so many years of financial and emotional shocks because the right support just isn’t there – 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, so every disabled child can access the therapies they need from a very early age.”
There are around 482,000 school children with EHCPs in the UK, rising to around 639,000 when including those aged up to 25 and/or not in school.
The number of EHCPs has increased by 166 per cent between January 2015 and January 2025.
As demand for provision grows, many councils have raised concerns about the unmanageable cost of provision, prompting the government to announce earlier that it will write off 90 per cent of the SEND deficits accrued.
The government has also indicated that it will be publishing its plans to reform the SEND system in the schools white paper, expected early this year.
Ahead of this, Sense has urged the government to ensure adequate funding for the SEND system, robust legal rights for disabled children, and joined up support between education, health and social care professionals supporting disabled children.
The charity’s survey of 1,000 parents, carried out by Censuswide, found:
42 per cent of parents had paid for private assessments to secure SEND support for their child, spending an average of £1,791 in the past six months
44 per cent had paid privately for therapies – such as speech and language therapy, physiotherapy or occupational therapy – that should have been funded by their local authority, spending an average of £1,680 in six months
39 per cent had made their own transport arrangements because their local authority would not fund home-to-school travel, spending an average of £1,567 over six months
Natalie and Azuriah interact with a snake at a Sense play session (Family handout / Sense)
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 or waiting years for vital assessments and essential therapies. They know that their child’s wellbeing, happiness and future life chances hang in the balance.
“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. For those who simply cannot afford it, it is their children who bear the greatest cost.”
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 routinely available when and where it is needed. We’re laying the groundwork for an inclusive education system where all children are supported at the earliest stage and can thrive in a school that meets their needs, getting the support when they need it, closer to home
“Our reforms in the upcoming schools white paper will create a better system for all families, where support is delivered earlier and closer to home, while retaining legal rights to support.”
