‘I really feel like I’m failing my son as a result of I’m not wealthy – budgeting by no means ends’
Children with special educational needs and disabilities face a new tiered system of support from 2029 – as ministers pledge to overhaul the broken special educational needs system
Natalie Thompson, 38, from the West Midlands, is a single parent to Azuriah, seven
A mum who faces forking out more than £7,000 for private therapy sessions for her seven-year-old son has said she feels like she needs to be “rich” to support his disability.
Natalie Thompson, 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 adviser in the health sector.
She faces £7,280 a year to pay for one-to-one therapy sessions that help him communicate and develop social skills – and is fighting for the costs to be part of His EHCP.
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.
“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.”
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Natalie is one of thousands of parents battling against a broken special educational needs and disabilities (SEND) system. Disability charity Sense’s research shows parents of kids with complex needs are spending more than £8,500 a year due to long delays for support.
Sense said parents are forced to pay for private assessments from professionals such as speech and language therapists and education psychologists while their kids wait to be granted an Education, Health and Care plans (EHCP).
EHCPs legally guarantee the support a child is entitled to but delays and inconsistent decisions mean families can wait years to get one. Some 638,745 children and young people had an EHCP last year, up from 353,995 in 2019, which has led to spiralling costs for councils and large deficits.
Under ministers’ planned overhaul, more than a million more children could have access to new support plans with a legal footing. According to leaked plans included in the Schools White Paper, which is expected to be published on Monday, children with EHCPs will be reassessed after primary school, with only kids with the most complex needs retaining one.
Under the new system, all children with special educational needs and disabilities (SEND) are expected to have access to new Individual Support Plans (ISPs), which will have some sort of legal status. The proposals, which are set to come into force from 2029, are expected to see kids categorised under three tiers of support: Targeted, Targeted Plus and Specialist.
The Schools White Paper will also set out plans to clamp down on spiralling independent special school fees. On average, they charge £63,000 per child per year – more than twice the £26,000 cost of a state special school.
The Department for Education (DfE) last night said it will set clear national price bands to end unjustified fee variation for the same provision, as well as statutory standards for independent special schools. The increased use of the independent sector is among the reasons blamed for the spiralling costs of SEND provision
Ms Phillipson said: “We’re cracking down on providers who put profit before children. New standards and proper oversight will ensure every independent special school placement delivers real outcomes for children – not unreasonable bills for local authorities.”
According to the latest DfE figures, there were 1.28 million children in schools receiving SEND support who did not have an EHCP in 2024/25, who could be eligible for ISPs under the reforms. But the plans have triggered criticism from some experts who warn that families’ existing legal rights under EHCPs must not be weakened under the new ISPs.
Some £3billion has already been announced to fund inclusion bases for children with SEND in all secondary schools, while £200million has been pledged to give teachers more specialist training. Sense’s polling 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.
Families are also losing income, with 40% of parents having had to reduce their working hours because appropriate support is not in place, while more than a third (35%) have left their job altogether, the disability charity said.
Kate Lawson, head of policy at disability charity Sense, said the charity is “deeply concerned by proposals to reassess children’s entitlement to support at major transition points, such as the move to secondary school, when stability is critical”.
She said: “Limiting EHCPs to those deemed to have the ‘most complex needs’ raises urgent questions about who decides that threshold and how families are expected to prove it – particularly when NHS waiting lists for assessment continue to grow. Families are exhausted from battling a system that is under-resourced and too often adversarial. Any new system must protect that joined-up entitlement and ensure it remains legally enforceable.”
Jolanta Lasota, chief executive of Ambitious about Autism, said any changes to EHCPs “must protect families’ existing legal rights”. She added: “Rumours of reassessments for autistic children as they move to a new stage of their education will ring alarm bells for many parents, particularly as previous leaks implied children with existing plans would keep them. It is often at these stressful transition points where autistic pupils who have been coping okay before start to struggle.”
A Department for Education spokesman said: “Our Schools White Paper will be an expansion of children’s rights – transforming children’s lives for the better and ending the one-size-fits-all school system that has held too many children back from the outcomes they deserve. We’ll set out our full plans shortly – building on the work already underway to secure a truly inclusive system.”
::: Sense polled 1,000 parents or carers of a disabled child with complex needs aged under 18 in November.
