Parents of Disabled Children Pay Thousands Amid 'Broken' SEND System Crisis

Parents of children with special educational needs and disabilities (SEND) are being forced to pay thousands of pounds out of pocket each year as the system continues to fail families, according to new research from the disability charity Sense. The findings highlight widespread issues with long delays, inconsistent decisions, and Education, Health and Care Plans (EHCPs) that do not fully meet children's needs, leaving many without essential support.

'I Feel Like I'm Failing My Son': A Mother's Struggle

Natalie, a 38-year-old mother from the West Midlands, exemplifies the crisis. Her seven-year-old son Azuriah is autistic, non-verbal, has global development delay, and was recently diagnosed with ADHD. Despite having an EHCP in place, Natalie says securing the right educational support has often caused her to "struggle to pay the bills."

To care for Azuriah, Natalie works only part-time as an HR adviser in the health sector. Her son started at a special school a year later than his peers after initially being offered a place too far away. Three years on, she continues to pay £140 per week—totalling £7,280 annually—for four hours of private therapy to develop his communication and social skills, claiming his school delivers little speech therapy.

"For our family, the budgeting never really ends and I still feel like I am failing Azuriah," Natalie said. "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."

She added that support at his school has been cut back, leaving families with "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."

Rising Demand and Systemic Failures

The UK has around 482,000 school children with EHCPs, rising to approximately 639,000 when including those aged up to 25 and/or not in school. Between January 2015 and January 2025, the number of EHCPs increased by 166 per cent, placing immense pressure on local authorities.

Many councils have raised concerns about unmanageable costs, prompting the government to announce it will write off 90 per cent of SEND deficits. The government has also indicated plans to reform the SEND system in an upcoming schools white paper, expected early this year.

Survey Reveals Widespread Financial Burden

Sense's survey of 1,000 parents, conducted by Censuswide, uncovered significant out-of-pocket expenses:

42 per cent of parents paid for private assessments to secure SEND support, spending an average of £1,791 in the past six months.
44 per cent 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 over six months.
39 per cent made their own transport arrangements because their local authority would not fund home-to-school travel, spending an average of £1,567 in six months.

Calls for Reform and Adequate Funding

James Watson-O'Neill, Sense chief executive, stated: "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." He emphasized that parents face an impossible choice: pay for support that should be guaranteed by law or watch their child go without.

Ahead of the government's white paper, Sense has urged robust legal rights for disabled children, adequate SEND funding, and joined-up support between education, health, and social care professionals.

Government Response and Future Plans

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... For too long, families have been forced to fight for support that should be routinely available."

The spokesperson added that reforms will aim to create a better system where support is delivered earlier and closer to home, while retaining legal rights to support.