A debate about the future of children’s rights is raging as the SEND reforms loom.
It has been widely reported the government will seek to reduce the number of children with legal rights to support, a move that worries many families.
But some believe ministers should go further, and claim those rights are too easily won.
As schools and families await the white paper, Schools Week speaks to three families who have found specialist provision hard to come by.
Leo*
Nine-year-old Leo* has ADHD, autism, dyslexia, dyspraxia and sensory processing disorder. He struggles with reading, writing, motor skills and is incontinent.
His mother Jackie* says that over time he shows more and more signs of not understanding social cues, says inappropriate thing and thinks people are out to attack him.
There is a “massive chasm” between his IQ and his achievement, she says.
Leo’s health professionals told Jackie an education, health and care needs assessment was needed to identify what support he should receive and whether it could be delivered in his current school.
‘He says school’s like a prison and that he wants to die’
Last June she approached his school with evidence, reports from the NHS and diagnoses. The application was sent to Surrey County Council in October.
Surrey’s initial request to his school was for more information on Leo’s attendance. Jackie said she found this “mind-boggling, because that can’t be the deciding factor”.
“He was going to school, because we’re down the road and we just manage things. But that doesn’t mean he likes it and that doesn’t mean he copes.
“He’s had attempts where he’s tried to throw himself off the banister, and had attempts where he’s got knives to his chest.”
‘He’s not catching up to his classmates’
On December 4, Jackie was told the application for an assessment had been denied. She says she was told he was doing “OK under ordinarily available provision”.
She says the council noted Leo had been taught mechanisms to deal with his anxiety, but included “nothing about the suicide attempts, nothing about any of that”.
Interventions for his dyslexia are “great”, but “he’s still below where he should be.
“He’s not catching up to his classmates. He is still getting into playground incidents. He is still crying. It is still hard. He says school’s like a prison and he wants to die.”
To make matters worse, the night before his needs assessment was denied, Leo “tried to strangle himself”.
“I obviously intervened. We had a chat …and a cuddle. I sent an email to the deputy head explaining what had happened and how concerned I was for his wellbeing…. The following day we get the refusal letter. And I was just like, ‘oh my God’.”
In the past two weeks the council has backed down and agreed to carry out an EHC needs assessment in response to safeguarding concerns – seven months after Jackie first approached Leo’s school.
One-to-one support requests
Jackie wants an EHCP to give a legal footing for the provision Leo already receives, plus more specialised supervision during playtimes to avoid escalations and fights. She also wants help with dyspraxia, emotional literacy support assistance and some one-to-one support with reading and writing.
Jonathan Hulley, Surrey County Council’s cabinet member for children, families and lifelong learning, says the council has agreed to 90 per cent of requests for an EHC needs assessment so far this academic year.
“We respond to requests for mediation and are keen to resolve any issues without the need for formal tribunals,” he told Schools Week.
The council has also “trialled a new mediation and dispute resolution officer role, and over 90 per cent of the cases they concluded were resolved without the need for formal processes. A permanent team has now been created to build on this success.”
Rhys
James Mahaffey’s nine-year-old son Rhys has autism and ADHD. He is very bright in certain areas, but struggles to make real friendships and get on with his peers.
He can get “quite angry and quite unmanageable” and sometimes “completely can’t control his emotions,” says James.
He’s had a one-to-one support worker since year 1, with whom he has a great relationship, but his mainstream school can’t meet his needs long term.
He can only concentrate for a maximum of 20 minutes so his support worker is “basically keeping him distracted while the rest of the class get on with other bits and pieces”, says James.
“A lot of the time he’s left to do colouring-in and cutting-out and sticking and stuff that he likes doing and that keeps him occupied, but isn’t actually helping him thrive in terms of learning.”
He also becomes disruptive if his one-to-one support is changed. “He’s been running around that school before – they can’t catch him.” He has been put in rooms to calm down, but has kicked the windows in.
‘Delay tactics’
After three years working through the EHCP process, his family weren’t able to find a specialist placement through Hampshire County Council, leading them to tribunal.
The family identified a special school they felt was suitable. But the school said it was full and that Rhys’s needs were not severe enough.
James says the council suggested a secondary school, even though Rhys is below secondary age, and another mainstream setting.
“We’re back trying to find a school that will accept him, but they’re all full because we’ve been through this process once already,” says James.
“It just seems to be delay tactics upon delay tactics. And then when you finally get to the point where you might actually get somewhere, [the council] roll out a highly trained, highly paid barrister to block you and push you right back to the start again.”
Pro Bono Economics has estimated the total public sector spend on SEND tribunals could be as high as £80 million, despite councils losing in 98 per cent of cases.
James is now taking advice from a specialist education solicitor at a cost of £275 an hour.
“From the council’s point of view, my belief is [they think] it’s just easier that way, leaving him where he is. He’s not causing any trouble, he’s not achieving anything, but then equally, he does go in and then he comes home.”
Increasing demand
Megan Carter, head of Rhys’s Berewood Primary School in Hampshire, said she could not discuss individual pupils, but her school and trust worked “very closely with all our families and the local authority to ensure every child is well supported and has a rich and meaningful learning journey.
“Whenever there are challenges it is always our intention to work together to find solutions and put in place whatever support is possible.”
‘She’s going to school but she’s not able to share with the kids’
A spokesperson for Hampshire said it understood “that parents want the very best for their children – and this is something we strive to deliver for all children within our educational settings”.
“Demand for special needs provision continues to grow exponentially, locally and nationally. In Hampshire alone, the number of EHCPs has risen by 243 per cent since national reforms in 2015.
“Coupled with growing complexity in children’s needs, this makes finding available and suitable placements increasingly challenging.
“Where we are unable to place a child in a family’s preferred school, we work closely with the child’s current school and parents and explore further adaptations to the child’s existing provision to ensure their needs continue to be met.”
Meghan
In early 2024, seven-year-old Meghan Correa snuck into her school bathroom to drink water. She nearly died.
Meghan, now 9, has end-stage kidney failure that means her fluid intake has to be severely restricted and closely monitored.
After the bathroom incident, she had to have four operations in a week, which nearly killed her.
Meghan is limited to 200ml of water a day. She receives 12 hours of dialysis daily and is on ten different medications. She has been on a waiting list for a kidney transplant for years.
Her family applied for an EHCP not long after the incident – and after the school told them to seek extra council help, says her mother, Edith Saenz Asto.
Meghan’s adult sister, Ivanna Colana Saenz, says the school was “not able to check if Meghan was, for example, going to the toilet or going to these water [fountains] to have some.”
‘Almost always a delay’
Martin Blain, the head of Meghan’s school, Galleywall Primary in south London, said: “When a child has a high level of need, there is almost always a delay of many months before an EHCP can be agreed.
“The child’s needs must be met from within the school’s existing resources. Imagine a child requiring constant one-to-one supervision: this means the school has to employ a whole new staff member which is unfunded. This is unsustainable in the current climate.”
Sarah Kee, the school’s assistant head, said delays in and refusals to secure appropriate support and funding placed schools under significant pressure.
“Families understandably seek reassurance and timely provision, while schools are often required to meet increasingly complex needs without sufficient funding or specialist resources.
“While schools continue to do their utmost, sustained pressure on staffing, budgets and morale highlights the need for more timely processes and adequate funding to ensure … provision is effective and sustainable.”
‘We tried to explain’
Meghan has to take medicine at school, needs to eat and avoid specific foods, and must have someone with her for drips.
But Southwark council refused to assess her for an EHCP, which could have funded a specialist staff member. Her family say the council suggested she go to a special school or into home education, but she wanted to stay at her mainstream school.
“Meghan has a disability, but she has the ability to play with the kids, to talk with them, to eat with them, all of that. So we tried to explain,” says Ivanna.
The family went to tribunal, before Southwark conceded the appeal in January 2025 – only to then assess Meghan for an EHCP and decide she did not qualify for one.
Now her family are going to tribunal again, with the hearing set for September – two-and-a-half years after they originally applied.
Meghan is still going to school, but she is kept in at playtime to avoid any mishaps.
“We understand the priority is her health, but she’s going to school and she’s not able to share with the kids,” says Ivanna.
Jasmine Ali, Southwark’s cabinet member for education, said the council was “so sorry to hear about the challenges that this family are facing and sincerely wish this child the very best with their treatment.
But “when a child does not have special educational needs, there is no EHCP”.
Ali said responsibility for supporting children undergoing significant health treatment lay with the NHS, the school nursing service and the “school making reasonable adjustments for accessibility”.
The national picture
These three cases are not isolated incidents. The latest government data shows just 46.4 per cent of new EHCPs were issued within the statutory 20 weeks. In 2024, 7.3 per cent took more than a year.
The examples also come as councils grapple with huge and growing high-needs deficits. All three local authorities mentioned above have “safety valve” agreements to reduce their deficits.
The government recently said it would take on any new cost pressures from 2028, but has not said what it will do about the historic deficits, set to swell to £14 billion in the next three years.
* Some names have been changed
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