Thousands of parents and children with special educational needs and disabilities are being failed by the system designed to help them, exclusive polling for ITV News Anglia can reveal.
A survey of 500 parents of children with special educational needs (SEN) and disabilities shows widespread discontent among families, failures in service and provision, and the shocking reality of a system that leaves hundreds in debt.
The poll, conducted by Opinium on behalf of ITV News Anglia, found that around a quarter of people (24%) described the SEN support in their area as poor or very poor. Some 30% described their support as adequate and 42% described it as good.
The findings are published as the government prepares to publish its long-awaited special educational needs improvement plan.
While most people described their support as adequate or poor, they also described excruciatingly long waits for healthcare support.
Some 81% of people said they had to wait more than three months for an appointment or diagnosis - of those, 50% said they had to wait more than a year.
Of those with an education, health and care plan (ECHP), a third (32%) said their child was not getting what they were entitled to in their plan.
Behind the numbers, lie the families who are paying the price - such as Chantal Osbaldeston's from Suffolk. Her children have both been out of school since last year.
Hermione is autistic, and Noah is dyslexic. Ms Osbaldeston decided to remove them from school after becoming frustrated by the lack of appropriate support for both children, and frightened at the impact it was having on her son.
"I pulled him out of school because he totally broke down," she said. "A 14-year-old breaking down at school crying is not normal, and actually I was really quite concerned at one point that he'd hurt himself."
Forced to bring in lawyers to try and get her children the right support, she now finds herself in debt and emotionally damaged.
"By the end of the summer it's projected to be £5,000 just on legal fees," she told ITV News Anglia. "I'm desperate.
"Also, they're capable children. I want them to achieve well, and they are able to do that."
She said she was now at the point "where you've got one child who is self-harming, completely melting down, and then you've got the other side who are saying 'Well, it's going to take you two and a half years on the waiting list".
The survey also details the debt people are being forced into as a result of having to use the legal system to fight for provision.
One in five people polled have had to go through the legal system to get provision, and over a third of those had spent more that £5,000 in the process.
Suzanne Hollinshead, from Bedfordshire, whose son Zac is blind and autistic, said that he was “desperate” to be in school but that he was unable to cope in mainstream school.
As a result of Zac’s parents' ongoing fight for their son’s education, they say that they have had to involve lawyers and that they are in around £70,000 of debt.
"We are financially broken," they told ITV News Anglia. "Our lovely home that we've spent 22 years building is at risk. And that's really tough.
"We will carry on, we don't have an outcome at the moment. In fact we're in a worse situation than we were two years ago, which is really hard to accept."
They say that trying to get their son a place at a specialist school has been more difficult than many people would realise.
“We’re professional individuals, used to dealing with paperwork, dealing with negotiating," they said.
“We’re good communicators ourselves, but we could never have imagined how hard it was going to be."
Charities are joining calls for reforms to the SEND system.
Sarah White, head of policy at national disability charity Sense, said: “Many parents of disabled children already face financial hardship, due to having to work fewer hours to provide care or needing to power specialist medical equipment such as feeding machines.
"The cost of living crisis has therefore had a devastating impact on many of these families.
“This financial crisis can often be compounded for those who are also navigating challenges in getting the support they need for their children. That’s why Sense wants to see a reformed SEND system that delivers the support children need, so that families can live their lives.”
Tim Nicholls, of the National Autistic Society, echoed the comments, adding that more specialist provision was needed.
“The education system simply isn’t working for many autistic children and young people, with an unacceptable lack of support in both mainstream and alternative provision schools," he said. "Parents speaking to our education helplines often tell us they are worried that mainstream schools won’t provide a sufficient level of support for their child, and that they are unable to find a place for their child in a specialist school.
“It’s vital that the growing need for autism specific support is met, and it’s equally important that all teachers and school staff receive mandatory autism training to improve understanding of autism in all schools."
He called for the government to address the "longstanding problems" in its SEND review, and urged schools and councils to work together "to meet the education needs of all autistic children and young people".
"Everyone deserves access to quality education, but we need a properly funded system to make that happen," he added.
This financial strain is only exacerbated by current cost of living pressures too, the survey suggests.
Just over three in five (61%) parents said they had had to cut back spending on support for their children, and of those who are paying for extra support support one in 10 are borrowing to fund it, and one in four are dipping into their savings.
The parents polled also sent a strong message to Westminster, with 51% of people saying they believe the government should take responsibility for improving the system in their area.
The government has already committed to putting extra money into SEND provision, and is looking to reform through its SEND review and green paper.
Experts say that review, shelved several times in the past two years, is long overdue.
Polly Kerr, from Tees Law in Bishop's Stortford in Hertfordshire, whose own child has additional needs, is a lawyer who represents families fighting for their children across the region.
She said: "I don't think it would [change much] because I don't think there are the school places available or the resources available to be able to affect change now.
"It's going to be like moving the Titanic."
She said thousands of children were being failed.
In a statement, the Department for Education said: "We want every child, including those with special educational needs and disabilities, to benefit from a world-class education.
“We are providing £2.6bn in capital funding between 2022 and 2025 to help deliver new places and improve support for children and young people with SEND or who will benefit from alternative provision.
"This is in addition to increasing our high needs funding by more than 50% compared with 2019 - to over £10bn by 2023-24.”
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