Parents spend £14billion trying to get support for children with special educational needs

10 February 2022, 14:45 | Updated: 11 February 2022, 09:43

Parents of children with special educational needs in the UK have spent more than £14billion trying to make sure their kids get the support they are legally entitled to.

The figures released this week come from a survey carried out by the campaign group ‘Let Us Learn Too’, who questioned more than a thousand mums and dads whose children have additional needs.

Over half of those families spent more the £10,000 on a combination of education tribunals, appeals, private diagnoses, solicitors’ fees and commissioning services.

One in ten spent more than £100,000.

On top of that is the addition of lost earnings through having to give up work to care for their children.

If you apply those figures to the 350,000 children in the UK with SEND it adds up to a combined spend of £14.6 billion.

Suzanne in St Helens had to leave her job in finance when her son was diagnosed with Autism, she said: "I gave up my career. So in lost earnings, in [my] pension, in legal fees, solicitors’ fees, in professional fees it’s cost me just over £250,000 in the last nine years.

"I sent it to my partner and said, 'Did you know we could afford to lose a quarter of a million pounds?'

"I cried, but you can’t miss a beat. There isn’t the luxury of wallowing in self-pity, you have to pick yourself up very quickly and carry on."

She’s successfully taken her local authority to a tribunal to get her child the help he needs.

It has cost her £11,000 in the past year alone fighting decisions by the authority.

"All I’ve achieved is the law to be upheld, for my son to have the access that he is legally entitled to, when the access is in place, children can thrive.

"It doesn’t seem like a lot to ask."

In Liverpool, Victoria had to fight for years to get her son a diagnosis of Autism after he began to find it difficult in school.

She says her pleas for help were ignored and as a result her son now struggles to accept his diagnosis.

He has mental health problems and attempted suicide last year.

Victoria had to make changes to the hours she can work to care for him and survive on statutory sick pay and help from family when she took time off work to support him during the summer.

"Not only are you worrying about the fact your kid has just tried to take their own life, but you’re also worrying about how you pay your bills.

"Luckily, I had help from my parents but if I didn’t have them, how would I have kept the roof over our heads?

"I truly, truly believe that had he had the help and support, and had the schools that he’s been in understood that it’s not just the kid who is kicking off in class, we wouldn’t have got to this point.

"There’s a lot of kids who are going under the radar."

The financial burden is something that’s felt long into the future too.

Emma Metcalfe says she had been promised respite care to help her disabled son, but the family were left with no support for more than two years.

Emma told LBC she and her husband both had to make changes to their working hours and eventually downsized their home to pay for help for Adam.

She said so far they’ve spent close to £100,000.

"I went to see a financial advisor to sort things out and he said, 'I don’t know how you’ve managed.'

"Neither do I. You’ve got that additional stress, not only are you looking after a child with additional needs, but it’s also just a constant battle all the time.

"This is our norm; you just have to get on with it but that doesn’t mean it's right.

"It does concern me in the future, will he ever get the chance to have any sort of independent living and what will happen when we go?"

A Department for Education spokesperson said: "The vast majority of cases for Education Health and Care needs assessments are concluded without the need to resort to Tribunal hearings.

"However, we know the system needs to be better for children with special educational needs and their families, which is why the SEND Review is looking at ways to make sure the system is more consistent, high quality, and integrated across education, health and care."