Jack Lowman, chief social change officer at the national disability charity Sense, says properly funding the special educational needs and disabilities (SEND) system is vital to help disabled children get the best start in life.

‘While other kids learn, play and have fun at their schools and nurseries, my disabled son Harvey breaks down. We couldn’t get the funding for a nursery place that best meets his needs, so now he doesn’t eat, and gets so distressed he pulls out his cochlear implants. It’s heartbreaking.’ – Harvey’s mum, Kimberly.

Intervention and proper support early on in life is vital for disabled children like Harvey, whose family is one of many we support at Sense to navigate the SEND system. But these families often find themselves hitting brick walls.

‘Complex’, ‘crumbling’, ‘shocking’ and ‘a nightmare’ are just some of the ways this system has been described. Harvey’s mum, Kimberly, says: ‘Battling the system to find an appropriate nursery for my disabled child feels lonely and isolating, but in many ways it’s worse to know I am far, far from alone.’

Sense's polling of 1,000 parents of a disabled child found that 45% have struggled to find a school that meets their disabled child’s needs, with more than a third (38%) forced to educate their child at home as the right funding or provision is not available for them. This has huge societal consequences. There are administrative pressures placed on parents, and on councils too. Local authorities are under strain to deliver support to disabled children, when the resources and funding to do so just aren’t there.

It was disappointing, therefore, to read a new report praised by Jeremy Hunt that appeared to blame this situation not on decades of chronic underfunding, but on ‘too many children being diagnosed’.

It’s true that more children, and adults, are disabled than before, but that’s not because of frivolity. There are a multitude of reasons, including advances in medicine and improvements in diagnostic techniques. What’s more pertinent is that demand far outstrips supply because public services, including local authority funding, have been chipped away at for years, and councils are now expected to support an increasing number of disabled children on scraps of public funding.

The report also suggested limiting Education, Health and Social Care Plans (EHCPs), legal documents that set out the support a child is entitled to, to children in special schools.

This would be disastrous for disabled children. Sense supports disabled children with complex needs, for example deafblind children like Harvey, and many of them attend mainstream schools. However, they’re only able to go to these schools because they depend heavily on specialist provision such as specialist equipment or teaching assistants. Without an EHCP, councils would no longer be obligated to fund these essential resources, which could have life-long negative consequences. We’ve already heard from parents of how isolating and lonely life can be for children who don’t have adequate support in place, with some children asked to sit out of activities like school trips, removed from classrooms and placed on reduced timetables. This is setting children up for failure.

The Government has recognised this situation is unsustainable and has been teasing an overhaul of the SEND system, though we don’t really know what form that will take. It has been rumoured that the Government may scrap EHCPs entirely, which is causing significant fear among many families we support, and would put many disabled children with complex needs at risk of losing out on the support they need to go to school.

Sense, alongside other charities working together as the Disabled Children’s Partnership, is urging the Government to keep EHCPs available to all disabled children and, crucially, to provide the SEND system with the funding it so desperately needs to ensure all children get the best start in life.