Families forced to pay thousands as broken SEND system leaves disabled children without adequate support

• New research reveals families are being driven to spend thousands of pounds out of their own pockets on assessments, therapies and transport that should be guaranteed by law.
• The national disability charity Sense urges the government to properly fund SEND reforms or risk further harm to disabled children and their families.

20 February 2026 – Parents of disabled children with complex needs are being forced to spend an average of more than £8,500 a year because the SEND system is failing to provide the support their children are legally entitled to, new research from national disability charity Sense reveals.

The findings* come ahead of the government’s long-awaited reforms to England’s special educational needs and disabilities (SEND) system, due in the next few weeks.

Polling of 1,000 parents and family carers of disabled children with complex needs**, carried out by Censuswide on behalf of Sense, found families spent an average*** of £4,270 in just six months on support that should have been funded by their local authority – or would not have been needed if the system was working properly.

Children and young people who need additional support in nursery, school or college currently access this through the SEND system by applying for an individualised Education, Health and Care plan (EHCP), which is meant to legally guarantee the support each child needs. However, long delays, inconsistent decisions and EHCPs that don’t fully meet disabled children’s needs means many youngsters miss out.

This failure means parents often feel forced to pay for private assessments from professionals such as speech and language therapists, occupational therapists and education psychologists to evidence their child is in need of SEND support, and to fund therapies including physiotherapy, speech and language support and occupational therapy to fill the gaps. The alternative is often risking their child’s development and health by leaving them on waiting lists that can last years.

Sense’s research found:

• 42% 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% 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% 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.

Beyond these direct costs, many families are also losing income. Two in five parents (40%) have had to reduce their working hours because appropriate support is not in place, while more than a third (35%) have left their job altogether.

Sense, a member of the Disabled Children’s Partnership (DCP), is now calling on government decision-makers to ensure the needs of disabled children with complex needs are fully addressed in any SEND system reforms.

The charity warns there must be adequate funding for the SEND system, robust legal rights for disabled children and properly joined up support between education, health and social care professionals supporting disabled children so EHCPs work properly – or disabled children’s development and emotional wellbeing and their families’ financial security will all be at risk.

James Watson-O’Neill, Chief Executive of the national disability charity Sense, 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.

“The government must act urgently to build a properly funded SEND system that upholds children’s legal rights to education. That means genuinely joined-up support across education, health and social care, so every child has the opportunity to learn, thrive and fulfil their potential.”

CASE STUDY: “It feels like you need to be rich to be disabled”

Azuriah Thompson, seven, is a smiley, bubbly little boy who is happiest with his family and friends – but for his mum, Natalie, securing the right educational and developmental support is a constant financial struggle.

Natalie, 38, from the West Midlands, is a single parent to Azuriah, who is autistic, non-verbal, has global development delay and was recently diagnosed with ADHD. Caring for him means she can only work part-time as an HR advisor in the health sector.

Azuriah has an EHCP and attends a special school – but he started there a year later than his peers, after he had already turned five.

Originally, Azuriah was offered a place at another special school but Natalie had to turn it down because it was too far from home. Instead, while other children his age started school, he was allocated just an hour and a half a day at a local mainstream primary school that couldn’t meet his needs. That lasted until the December, before he was moved back to nursery part-time and gradually built up his time there from two hours a day to four by the end of the academic year.

During that disrupted year, Natalie says Azuriah missed out on around 500 hours of education and made little progress. His limited school hours and the time she spent fighting for proper SEND support also made it impossible for her to work, causing financial strain.

Natalie is determined to do everything she can to support Azuriah’s learning and help him make up for lost time. Before he started at his special school – and despite money being tight – she began paying for him to have therapy sessions to help him communicate and develop social skills. Three years on, she is still paying out of her own pocket for him to have four hours of therapy each weekend.

From May 2025, she was told his sessions must be delivered one-to-one because his behaviour can be challenging, increasing the cost to at least £140 a week, or £7,280 a year. During school holidays when Azuriah’s routine is disrupted and he feels more unsettled, he needs extra sessions, pushing costs up again.

Natalie is now fighting to have therapy costs included in Azuriah’s EHCP, which she says is too “woolly” to meet his needs. She also worries Azuriah no longer receives enough speech therapy at school. Despite all her efforts to plug the gaps in the SEND system, Natalie admits she sometimes feels like she is failing her son.

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.

“For the past three years, I’ve paid for Azuriah’s therapy sessions because I desperately want everything to come together for him, so he has the skills to communicate and thrive and have a decent quality of life as he grows up and ultimately once I am gone.

“But it’s often been a struggle to pay the bills. Some months, I end up paying more because whenever there’s an adjustment – say it’s the start of the school holidays and his routine is thrown or he’s having a growth spurt – he can have challenging behaviours. He might disengage or throw something or try to hit out, and then he’ll need extra therapy sessions.

“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.

“I want to do everything I can to support Azuriah’s learning – but putting so much of the burden to pay onto disabled families like mine because the SEND system is failing is wrong.

“I can’t work full-time and I can’t work during school holidays because I need to look after Azuriah since there are no holiday clubs that meet his needs. For the year before he started at his special school, I couldn’t work at all because he was only in school or nursery for an hour and a half or two hours a day – it was crazy – and at any time I could be called in to collect him.

“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.”

References: 

*The research was conducted by Censuswide, on behalf of Sense.   

1,000 UK respondents who are parents/carers of a disabled child with complex needs aged under 18 were surveyed between 14 November to 22 November 2025.

** ‘Complex needs’ was defined in the research as deafblindness or at least two of the following: sensory impairment, a learning disability, autism, physical impairment.

*** Respondents in the survey were asked how much of their own money in the last 6 months  they had spent on a list of options related to SEND support and there was a range of costs for each option. The average was taken from each range and applied to every response in the survey. The total average cost was calculated by adding together every responses’ costs and then averaging the totals. The total was then multiplied by two to be applied to a year.