We’re furious our disabled son is still in nursery because he’s been denied the right school – education is a right, not a privilege

We’re furious our disabled son is still in nursery because he’s been denied the right school – education is a right, not a privilege

- in Usa News

OVER the last couple of weeks Britain’s scrubbed-up children have ventured back to school – to the relief of exhausted parents.

But for thousands of families a new term is just a dream, their kids are still at home because councils can’t meet their needs.

Freddie Hales, four, with his mum, Sarah, and dad, Paul. Freddie’s parents were so unhappy with the school he was offered they have kept him in nursery for another year rather than sending him to it
Paul Hales

The number of young people with special educational needs and disability (SEND) waiting for a school place has doubled in two years.

In fact, the NEU teaching union has found that 8,587 children and young people with education, health and care (EHC) plans are classed as “awaiting provision” for a school place – they have no access to education.

Last week the government announced a big boost to school funding, but what is still not clear is how that funding will help children with SEND.

Here, The Sun talks to two families about how their children have been left behind and why exactly the government needs to be clear about its plans.

Both are clear examples of exactly why the government needs to re-instate the £434 million social care funding it has cut from disabled children, which is what our Give It Back campaign is calling for.

You can support Give It Back by signing our petition here.

Freddie was starved of oxygen when he was born, meaning he has brain damage

‘He wouldn’t be safe at school’

Freddie Hales should be getting to know his first ever classmates this week.

Instead the inquisitive four-year-old with a love of dinosaurs has had vital care funding withdrawn because his parents don’t want to send him to an unsuitable school.

At birth Freddie was starved of oxygen for 18 minutes, and as a result he has severe brain damage. Freddie has also been diagnosed with severe bilateral dystonic Cerebral Palsy, which means he suffers with involuntary muscles spasms and low muscle tone. He has very little control over his limbs.

Despite his physical disabilities, Freddie is a smart little boy. He might not be able to talk but he uses his hands to communicate and can interact with those who know him.

Freddie should have started school last week, but because his local authority are refusing to send him to a school that meets his complex needs in the neighbouring borough, Freddie will stay behind at his nursery for another year while his parents appeal against the decision.

Their local authority, Sutton, have told them he will not receive any of the funding he is entitled to through his Education and Health Care Plan (EHCP). This paid for his physiotherapy, speech and language  and occupational therapy.

Is your family affected by the cuts to funding? Tell us your story. Email: [email protected]

His dad, Paul Hales, 32, explains why the family feel so let down: “Freddie was given a place at a special school within the borough of Sutton, but it is not the right place for him.

“The primary reason being that we don’t feel he would be safe.

“The school caters for children with profound and multiple learning difficulties. Many of them are on the Autistic Spectrum Disorder and have severe learning disabilities. Freddie has none of these, he is very cognitively able.

“When we visited the school a boy approached Freddie, who uses a wheelchair, and shook his chair. There was nothing Freddie could do about it – it really made us see how vulnerable he would be there.

“Those children are very physically able and while Freddie is bright he has very limited mobility.

“It also doesn’t have the facilities to care for his physical disability, because they are specialised in caring for children with completely different needs.

“Because of Freddie’s muscle spasms, he needs physio and massage therapists quickly after an episode, otherwise his bones will get weaker and his muscles dis-jointed. He also needs specialist equipment to help when he has a spasm but they don’t have it on-site.

“In effect it’s a school designed for children who are the total opposite of Freddie.”

Paul with his son Freddie, who he has vowed to fight for to ensure he gets the most suitable school placement
Paul Hales
Freddie loves dinosaurs and is a happy little boy
Paul Hales

‘Disabled kids shouldn’t have to “make do”‘

Paul and Sarah, Freddie’s mum, did find a school in the neighbouring borough of Kingston which they feel would be ideal to support Freddie’s needs.

So Paul, a procurement manager and Freddie’s full-time carer, and Sarah, an Intensive Care Unit nurse, have made the difficult decision to hold Freddie back a year while they appeal the council’s choice.

The family already pay for any equipment Freddie needs through fundraising because they say the NHS provision has been poor.

And now the family have also employed, at their own cost, an advocate to help them get Freddie into the school they feel is right for him.

Paul and Sarah were told sending Freddie to the school they like wouldn’t be an “efficient use of public resources”.

“I feel so angry and upset. It feels as if children with disabilities are expected to ‘make do’,” Paul says.

“We have a lot of family support to help us fight for Freddie. But what about those single parents or those without the family network?

“They will be so exhausted caring for their disabled child they won’t be able to battle. It shouldn’t be that way.”

A Sutton Council spokesperson said: “We make sure every child in Sutton goes to a suitable school. We do this by working with parents, carers, health professionals and schools. School places are considered by panels of local experts.

“All school places for children with Education Health and Care Plans  – whether in a special or a mainstream school – are based on evidence.

“We also consider the views of parents very carefully. It is not right to suggest any child in Sutton has been denied a suitable school place and we cannot comment on individual circumstances.”

The family are furious that Freddie is being denied the basic right of education
Paul Hales

‘I’ve been left behind’

Harry, 13, will soon have to make the first milestone decision that could shape the rest of his life – choosing his GCSEs.

But Harry says he is totally “unprepared” because he has missed out on a huge chunk of his education.

Harry, from Kings Lynn, Norfolk, says: “My friends know a lot more than me because they have been in school. I don’t know half the stuff they do. I’ve been left behind.”

In fact, Harry has gone 20 months (from Dec 2017) without any education because his local authority haven’t provided him with the home tutor he desperately needs.

Harry, who has autism, also suffers from chronic fatigue syndrome.

A bright boy, he intends to follow his dad Antony into a career in I.T. His medical condition means he is physically unable to get to class – yet he has been denied a home tutor.

Harry says: “I won’t be able to get a job without my GCSEs, and there’s a chance I won’t get any GCSEs if I can’t do my lessons.”

If Harry is “unhappy” about the situation, then his mum, Tracy is livid.

The 47-year-old mum says: “Prior to December 2017, Harry was physically fit and well.

“He played for the local football and rugby teams, and his autism caused few problems. Then he contracted meningitis and chronic fatigue followed.

“I have been asking for a home tutor for over a year. He was offered online tutoring but, because he is also dyslexic and gets one-to-one support at school, it wasn’t suitable for him.

“Harry got completely fed up with it, and has been diagnosed with depression, which I think is partly down to feeling undervalued.

“He is now on anti-depressants but before that he couldn’t get out of bed or get dressed. At least now he’ll come downstairs dressed and wants to engage.”

Harry with his mum, Tracy, dad, Antony, and brother, George – who also has autism
Damien McFadden – The Sun

‘We’re battling ridiculous red tape’

In May, Harry finally received a formal diagnosis of chronic fatigue syndrome, which means he should now be able to have a tutor.

Social Services have also got involved and Tracy has made a complaint to the local government ombudsman.

The former bank manager explains: “Social services have said the current situation is a breach of Harry’s human rights. They are trying to provide him with an advocate who he can talk to about things concerning him and who can take him out. But at the moment they are struggling.

“We are also seeing occupational health who is going to work on getting Harry more mobile and ultimately back to school – even if it is only an hour a day – that would be a major improvement.

“I’ve spent hours and hours going to meetings with various people and firing off emails. My priority should be looking after Harry, and my younger son, George, who also has autism, not sorting out his right to an education. It makes me furious.

“The school has been very supportive and it’s not their fault at all, it’s all down to ridiculous red tape.”

Harry got an Educational Health and Care Plan (EHCP), which enables him to get special needs help at school, when he was eight years old.

Tracy says: “Only the most mean-spirited would disagree that young people with disabilities should receive help to access education and achieve as much as they can. There are systems and laws in place to make sure that happens. But they don’t work. They keep failing families.”

Tracy is also still locked in a battle to get Harry’s needs reassessed by the local authority – Norfolk.

She says: “He hasn’t been reassessed since he was eight years old and I believe his needs have changed in that time. But when I have asked for another assessment, I have been refused.

“I have spoken to my MP and Trade Secretary, Liz Truss, who was utterly disgusted and said the reassessment needs to happen.”

Harry and his brother George are both aware of the difficulties they are facing
Damien McFadden – The Sun

Sadly, Harry and George are becoming more aware of all the battles surrounding them.

Tracy said: “They have low self-esteem, they feel devalued, and it’s devastating to see.

“Harry is the warmest, most affectionate boy. He still loves having cuddles. He’s also got a wonderful sense of humour.”

Tracy and Antony have joined our campaign because they feel families with disabled children are suffering unnecessary stress in getting the support they deserve.

She says: “I can deal with the autism, that’s not an issue. What I find hard are the constant battles.

“I feel like I have the weight of the world on my shoulders. I fight for my boys because they deserve to be heard.

“Children with disabilities are too often put on the back burner, and they don’t deserve to be – 20 months without any education is simply not acceptable.”

Norfolk Council haven’t responded to our request for comment.

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