Families at breaking point: we investigate the SEND system
We hear from Kirklees parents, a SEND expert and a local MP
Last updated 13th Aug 2024
We're hearing from Kirklees parents at breaking point as we investigate provision for Special Educational Needs in the borough and across the county.
Warning: This article includes some description of self-harm methods
The area has the second highest wait for Educational Health Care Plans (EHCPs) in West Yorkshire, with half of requests for assessments being refused.
As with almost every part of the county, the number of requests for EHCPs has also doubled in recent years, from 517 in 2019 to 1,037 last year.
Kirklees Council insists it is taking steps to deal with the huge rise in demand for Special Needs provision; but the parents we’ve spoken to tell us they’ve spent years battling the system and claim their questions and complaints are often ignored.
The mothers out of work to look after their children
Michelle* has had to give up her job to stay at home with her 12-year-old daughter who has autism and has been out of education for a full school year. She also has a 14-year-old son who has autism and ADHD and is frequently out of school.
She says both have been left struggling after their school ‘unlawfully’ failed to meet their needs. She claims Kirklees Council has also not delivered things her children are entitled to, such as an Occupational Therapist which is set out in her daughter’s EHCP.
'It’s about worrying if your child will make it through the night because they’re so distressed'
Her family has now spent thousands of pounds on legal fees and private medical assessments in their fight to secure an education which meets the children’s needs.
“It feels frustrating and it feels isolating, and it makes you feel that you’re almost not worth anything,” she says.
“I’ve got a brain, I was good at my job, I want to work. And to have to turn your back on that, and the wage that comes with that, is really distressing actually.”
As a result of her children’s needs not being met she explains how they became overwhelmed in class and ended up in autistic burnout.
“When you’ve got your child rigid in your arms, crying that they do not want to be here anymore…that they would rather die than go to school…. That’s what it looks like, it’s not about ‘oh I just don’t feel like it.’”
“It’s about worrying whether your child’s even going to make it through the night because they’re so distressed. Hiding the knives in the house. Hiding the medicine box. Are they going to run out of the house? Are they going to rip a door off the hinges? These are the things that you’re dealing with. And you’re a parent, not a mental health expert.”
'I've got a brain, I was good at my job, I want to work'
And Michelle isn’t alone. We met two other mums who have had to abandon their own careers to look after their neurodiverse children alongside battling to secure an education for them.
“I had just started my own business, so I’ve had to park that” says Frederike.
“Where there should be support, there’s just battle on top of what’s already really challenging. Your life is just being made harder.”
Frederike’s son is nine but is functioning at the age of a 2 to 3-year-old with significant disabilities and developmental delays. Despite all of that, her request for an EHCP was declined twice. On the third time, it took a year for the plan to be issued – despite the legal deadline being 20 weeks – by which point it was out of date and no longer covered his needs.
Figures from a Freedom of Information request reveal only half of requests for an EHCP needs assessment were approved last year, compared to 97 percent five years ago.
Karen worked in higher education and is another local mum in a similar situation.
“I’ve trained for years, gone through all the hoops getting the pieces of paper for degrees and masters to be able to do what I want to do,” she says.
“And it’s a case now of having to just try and find something to fill the gaps.”
She’s spent several years paying for private reports and assessments for her 10-year-old daughter who has a chromosomal disorder, and estimates she has spent around £15,000 to date.
“I’m reasonably well equipped to be able to navigate the system, even though it nearly kills you,” she says.
“But I used to lie awake at night and think ‘what about the parents who are not in the position to do this?’ God only knows what the actual impact is.”
The mum whose twins were driven to self-harm aged 8
Izzy’s* twin girls were just eight years old when she says they were driven to self-harm after ending up in autistic burnout.
“It got to a point just at the start of year 4 where we had to do all that we could in our power to keep them safe,” she says.
“From running into the road, from hiding anything sharp in the house, string, rope, shoelaces… we really had to be hyper vigilant.”
Her daughters are academically bright, but she says a lack of understanding about how autism can manifest in girls in particular led to their needs being unmet in school, leaving them to struggle with huge emotional meltdowns outside of school.
'To see your child in the very depth of despair... it's devastating beyond belief'
They are now 10 years old and have been out of school for two years whilst Izzy battles to secure an alternative education.
She's so far spent 50 weeks waiting for an Educational Healthcare Plan for them, despite the legal deadline for this being 20 weeks.
Figures show that deadline is being met in just 13 percent of cases in Kirklees – this compares to 8 percent in Leeds, 71 percent in Bradford, 89 percent in Wakefield and 98 percent in Calderdale.
“To see your child in the very depth of despair where they literally see no way out, where they would rather die than exist because life feels so hard for them… it’s devastating, beyond anything that you can believe.
“To me they are like wilted flowers. I am doing all I can, but I’m not an educational professional, I have to work fulltime. The saying that you are only as happy as your saddest child couldn’t be more true.
“This process breaks families. Trying to get a diagnosis, trying to get help and support via CAMHs, trying to get an EHCP, it is brick wall after brick wall and that is relentless.”
The SEND expert: ‘It is literally the worst it’s ever been’
Garry Freeman is an independent SEND consultant based in West Yorkshire who supports educational professionals and families across the country.
Before that he spent 43 years working as a teacher and tells us the situation nationally has ‘never been this bad’.
“A major issue I’m seeing at the moment is one where both the local authority and the school simply ignore all communication from parents. Absolutely flatly ignore it. They don’t acknowledge or respond in any way. It creates the impression they are doing it in the hope that parents will just give up. It’s all over West Yorkshire, and it’s everywhere in England that I work.
“It is much, much worse than I have ever known it.
“What (local authorities) have a tendency to do is use their own criteria and their own rules in place of law. The difficulty is that there is no inbuilt accountability in any of the legislation.
“It’s a very difficult position for parents to be in. They can try to go down the mediation and then tribunal route, but they are only available for certain sections of an EHCP. So it is limited what a parent can do, and certain aspects of it do require them to spend amounts of money that many parents just don’t have.”
He acknowledges that the demands for special needs provision have grown exponentially, and believes part of the solution could be to equip schools with the means to identify and meet needs from a much earlier age.
This would take funding, but he argues in the long run this would be considerably cheaper than the ‘hundreds of millions’ being spent on legal fees further down the line fighting parents at tribunals and judicial reviews.
“It would filter out those children where a school could address their needs and it would mean fewer demands on special needs and spending as those children got older.
“That to me can make the biggest difference. That is how you prevent the problems later on.”
The local MP: ‘The system is broken’
Kim Leadbeter is MP for Batley & Spen and has been meeting with families, teachers and council members to talk about SEND issues.
“Sadly the SEND system is broken,” she says.
“The pressure is so much that sadly lots of children and lots of families are paying the price.
“I’ve had meetings in Parliament with organisations who deal with special educational needs and they have said the amount of money it is going to cost to fix this system is extortionate.
“I was delighted that one of the first pieces of communications Bridget Philipson, our new Education Secretary, put out talked about SEND and the desperate need to sort the system out.
“We are dealing with a big national problem and I am looking forward to the Labour government turning that around.”
She says the government needs to work with schools, teachers and councils to ask why the system is broken. The Department for Education has also committed to a review of the curriculum and the way children are assessed which Kim hopes will be ‘instrumental’ in helping children with special educational needs.
On the claims that councils including Kirklees are sometimes failing to reply to or acknowledge parents’ emails, she says it is ‘never acceptable’ to not respond to families who are reaching out for help:
“I hope those cases are few and far between. I appreciate the situation the local authority is in around a lack of resources.
“But there’s no excuse for not responding to families in need because ultimately it’s the children that are paying the price for that. Communication is key, and communication between the schools and the families and the local authorities is absolutely pivotal.”
Response from Kirklees Council
Kirklees Council didn't want to do an interview with us about the issues raised but a spokesperson said: “We cannot go into detail about individual children but, in all cases, our aim is to carry out assessments as quickly as possible.
“Many councils face challenges with the timeliness of EHCPs. This is mainly due to a huge rise in demand for Special Educational Needs and Disabilities support, including EHCP assessments.
“Locally, we are taking several steps to address the issue, including increasing staff numbers, streamlining processes and investing in new IT systems.
“We know EHCPs are vital to families and to the ways local children are supported. We also want all of our children to be in an education setting that best meets their needs.
“We aim to work closely with families, and the quality of assessments is also very important to us.
“Supporting those with additional needs is a council priority – we are ambitious for all children and families to achieve the best possible outcomes.”