Two in five parents ‘educate disabled children at home due to lack of provision’

By Eleanor Busby, Reporter3rd October 2024News EnglandDisabilities, Learning Disabilities, News England, Special Education Needs / Disabilities

Nearly two in five parents have been forced to educate their disabled child at home because of a lack of suitable provision or funding, a survey has found.

A third (33%) of parents of disabled children have had to go to tribunal to have their local authority agree to fund their child’s education, according to the poll for disability charity Sense.

Parents have been forced to give up their careers because their children’s needs are not being met, while others have had to spend their children’s savings to fight for support, the charity said.

The survey, of 1,001 parents and guardians of disabled children under the age of 18 in the UK, found 46% struggled to get an education, health and care (EHC) plan in place for their child, and a similar proportion (45%) said they had faced difficulties in getting the plan delivered.

The charity has estimated that around 200,000 disabled children in England are having problems getting the right support through an EHC plan.

An EHC plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.

These plans identify educational, health and social needs and set out the additional support to meet those needs.

The poll, which was carried out by Censuswide in September, found that 39% of parents said they have had to educate their disabled child at home as there is not the funding or the right education provision available to them.

The charity is calling on the Government to set out an improvement plan for children with special educational needs and disabilities (Send) in its upcoming Children’s Wellbeing Bill.

Richard Kramer (pictured), chief executive of Sense, said the survey findings highlight the “shocking realities” of the special educational needs system right now.

He said: “Every child has the right to access education to get the best start in life, and it is unacceptable that hundreds of thousands of disabled children are being denied this basic right.

“This lack of support also puts a huge toll on parents, impacting the whole family. Getting an EHC plan is often a complex and lengthy process involving multiple assessments and draft plans. Having to fight for the right support is emotionally and, frequently, financially taxing.

“We’ve had parents tell us that they are spending savings put aside for their children’s future before they even start school, just to fight for the right support. Other parents have had to give up their careers because their children’s needs aren’t being met.”

A mother of a child with Developmental Language Disorder from London, who wished to remain anonymous, said she quit her job to help her son get support.

She told the charity: “It took private assessments, personal funds, and a lot of hard work collating the evidence needed to be taken seriously.

“I put all this evidence together, and completed some scoring assessments myself, looking at all these different areas of development. I was working at the same time which was extremely stressful and difficult.

“After the initial diagnosis, I think my world just crumbled. We were kind of like zombies for a few months. It was a lot to take on.

“We had no understanding in terms of where we go with this and how to navigate the system, which I think is corrupt and working against a lot of families. I decided to leave my job so I could really focus on helping my son on a day-to-day basis.”

She added: “There are so many levels where the EHC plan has been a massive failure, and the plan is totally watered down.

“They’ve not included all the appropriate provisions and it’s written in a way which gives the school no clarity.

“There’s so much grey area so I’m unable to hold local authorities to account for not meeting my son’s genuine needs.”

Paul Whiteman, general secretary at school leaders’ union NAHT, said: “Parents should not face this kind of battle just to get the support their children need, or ever be left feeling they have no choice but to turn to home-schooling because this help is not being delivered.

“Schools work tirelessly to put the right support in place, but capacity and investment in schools and specialist services has simply not increased in line with soaring demand over the last decade.”

Arooj Shah, chair of the Local Government Association’s children and young people board, said: “Councils want to ensure that every child gets the support they need and the best start in life.

“However, these findings are symptomatic of a Send system in crisis with rising transport costs and growth in need.

“We want to work with the Government on long-term Send reform that improves children’s lives and is financially sustainable for councils, and call on the Government to take action in the autumn Budget to stabilise services under pressure.”

A Department for Education spokesperson said: “For too long, children and young people with Send have been let down by a system that is not working, with parents too often battling to get their child the support they need and, more importantly, deserve.

“We are committed to improving inclusivity and expertise within mainstream schools, as well as making sure special schools cater to those with the most complex needs.

“There is no ‘magic wand’ to fix these deep-rooted issues immediately, but we have already started and will act as quickly as possible to ensure that every child gets the best start in life.”