The SEND system is broken: “It feels like you need to be rich to be disabled”
Navigating the SEND (Special Educational Needs and Disabilities) system has been a nightmare.
Our family has had so many years of financial and emotional shocks because the right support just isn’t there.
My little boy, Azuriah, is such a smiley, bubbly child. He has complex needs, which means he needs to attend a special school covered by his Education, Health and Care plan (EHCP). But it’s taken a long time to reach this point, and the costs associated with his learning continue to put a real strain on our finances.
A disrupted start
Children and young people who need additional support in nursery, school or college currently access this through the SEND system, by applying for an Education, Health and Care plan (EHCP), which provides a guaranteed, legal right to support. However, families frequently report long delays, inconsistent decisions and costly, adversarial processes – leaving even children with the most complex needs without the help they are entitled to.
Originally, Azuriah was offered a place at another special school, but I 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.
During that disrupted year, he missed out on around 500 hours of education and made little progress. His limited school hours and the time I spent fighting for proper SEND support made it impossible for me to work at my job as an HR advisor.
I make the sacrifices I do because I’m determined to do everything I can to support Azuriah’s learning and help him make up for lost time.
Three years on, I’m still paying out of my own pocket for him to have four hours of therapy each weekend to make sure he doesn’t fall behind at school again.
Last May, I 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 his routine is disrupted, he needs extra sessions, which pushes the costs up again. It’s not sustainable for me.
Our research* found that 44% of the parents we surveyed had paid privately for therapies such as speech and language therapy, physiotherapy or occupational therapy for their disabled child with complex needs. Costs which should have been funded by their local authority.
Our financial reality
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, but that could easily cost more than £10,000 a year, and I can’t afford that.
I’ve paid for his therapy sessions for the last three years 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’m 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 off, 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 that paying for the extra therapy has helped Azuriah, but I shouldn’t have to manage this on my own. He has an EHCP now, and to me, this is basic support. However, I don’t think it goes far enough. He had started with speech therapy at his special school, but it has been reduced to almost nothing.
Failures mean that 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 needs SEND support, and to fund extra therapies to bridge the gaps. The alternative is often risking their child’s development and health by leaving them on waiting lists that can last years.
The system needs to be fixed
It’s a constant battle with countless disruptions, and I don’t want him to regress.
I want to do everything I can to support Azuriah’s learning but putting so much of the financial burden on disabled families like mine because the SEND system is failing is just plain wrong – the system needs to be fixed.
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 for an hour and a half – it was crazy – and at any time I could be called in to collect him.
Our research* shows that beyond the direct costs, many families are also losing income. Two in five parents (40%) we surveyed 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.
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.
In the upcoming reforms, we’re calling for adequate funding for the SEND system and robust legal rights for disabled children, with properly joined-up support between education, health and social care professionals so that EHCPs work properly. Otherwise, disabled children’s development and emotional well-being, and their families’ financial security, will all be at risk.
Join our campaign for change and follow our channels to stay informed.
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 and 22 November 2025.