Parents are concerned Labour’s reforms of the SEND system could worsen access to education for children with special needs, leaving autistic pupils to “fall through the cracks”.
They fear the hard-won legal support for these children with special educational needs and disabilities (SEND) could be taken away as part of the Government’s new four-tier system, outlined in the Schools White Paper, which will reassess pupils’ needs.
Providers of special needs education have also expressed fears that the new approach will force children to “fail first” before being offered the correct level of support.
On Monday the Government confirmed that education, health and care plans (EHCPs) – legal documents entitling young people to support – will be reserved for those with the most advanced needs.
‘Feel like you’re battling the whole time’
Julia May-Brown spent more than a year fighting for her daughter – who is autistic and has ADHD – to get an EHCP, and described the process as “traumatic”.
She said: “You feel like you’re battling the whole time. There’s so much red tape – it feels like the system is designed to try and put you off.”
The proposed reforms, which are set to change EHCP eligibility, have made her “incredibly sad”, she added.
“Behind every single EHCP there is a family who’s really battling. Their life has been completely hijacked. They’re worried about their children’s safety and all of the challenges of being a SEND parent, and on top of that you’re in a massive fight with your local authority [over the EHCP].”
Under Labour’s plans, children with conditions that present on the lower end of a spectrum, including autism and ADHD, are at risk of losing their EHCPs.
“I think it’s dangerous in [the sense of] who determines how complex a child’s needs are, and how do you define who’s struggling more than somebody else?” said Ms May-Brown.
“It’s an invisible condition if you’re autistic and ADHD and you’re high-functioning. Who’s to say that your child deserves less support than a child with very obvious needs?”
She added that a lot of parents, herself included, are “scared” about the proposals amid conerns that they will make it harder to get specialist support.
She that that if the reforms mean children “don’t need [specialist support] because there is better support and there’s more money going into the schools, then that’s fine. I’m just worried that autistic young people will still fall through the cracks the way that they’ve always done.”
To cut down on the ballooning cost of special schools, the Government is providing £1.6bn for SEND budgets at mainstream schools, and £1.8bn for more SEND specialists to help children.
‘It makes me feel sick’
Children are set to have their needs – and their EHCPs – reassessed at transition phases, such as when they move from primary to secondary school.
Ms May-Brown said she struggled to understand why this decision had been made, adding: “I just cannot understand why and how they think children that have needs in primary school will just not have those needs in secondary school. If anything those needs are only going to get greater as they go through puberty.”
Another parent, Jo Southam, who has two children in primary school, said she felt “sick” at the idea of having to go through a reassessment again.
Under the new system, children will either get a Specialist Provision Package (SPP), which could qualify them for a new-style EHCP, or an Individual Support Plan (ISP), which means they will no longer meet the criteria.
Ms Southam said: “I have sleepless nights thinking about what’s going to happen with secondary school. It was so traumatic, we’d have meeting after meeting and nothing was being done.”
Another parent, who preferred to remain anonymous, said the transition to secondary school “totally and utterly ruined” her daughter, who was suffering from autistic burnout and too anxious even to attend her own assessment for an EHCP.
“The whole process was absolutely horrendous for my daughter,” said the parent. “It’s like somebody that’s deaf, you don’t change your diagnosis. If the support is in place why remove it because the child is doing well?”
‘Years without EHCP were a nightmare’
Kirsti Hadley, who secured an EHCP for her 14-year-old son after he was out of school for three years awaiting support, said she was terrified of what could happen if it is taken away.
She described the years that her son did not have an EHCP as “a nightmare”. He deteriorated the longer he was away from school and his mother had to give up work to look after him.
“We were told he’d have to do a year in his new secondary school first, ‘fail first’, and then the school would consider applying for support. He did fail, catastrophically, and wasn’t able to attend for three years,” said Ms Hadley.
“He’s now back in school full-time. It’s so frustrating, it was all completely avoidable. He could have been doing this the whole time if he’d had the support.
“What concerns me about these reforms is the children will be doing well because they have the support, but if you take that support away, you’ll see the whole thing collapse again.”
‘Getting an EHCP cost me £35,000′
Another parent, who wanted to remain anonymous, took his local authority to the SEND tribunal to obtain an effective support plan for his son. He and his wife both gave up their jobs to work on the case, and employed specialist lawyers costing up to £35,000.
“We were at our wit’s end,” he said. “His class teacher told us he’s just not going to cope in mainstream school.” The father and his wife decided to put their son into an independent school while they applied for an EHCP.
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The Government has set out plans to resolve the “vast majority” of legal disputes over SEND support through “independent mediation services”. The tribunal will still exist as a “backstop” but its role is expected to be limited.
“No one wants to go through that tribunal process. It’s cost us our sanity,” the father said, but added that without it, his son would still not have the help he needs.
He fears that parents will not be able to fight for their children’s education if they lose this channel to appeal.
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