A Measure What Matters investigation into the suicide of neurodivergent children failed by the SEND system — and a system that answered their deaths with no learning, no accountability, and, as of today, no recourse.
Content warning: This report contains detailed accounts of child suicide, suicidal ideation, and self-harm. It has been prepared with regard to guidance on the responsible reporting of suicide issued by Samaritans and Papyrus UK.
If you are affected by any of the issues raised in this report, support is available: Samaritans: call or text 116 123 (free, 24 hours a day, every day of the year) Papyrus HOPELINE247 (for young people and anyone concerned about a young person): call 0800 068 4141, text ‘HOPE’ to 88247, or email pat@papyrus-uk.org
“September rolls around again and she knew she had to go back to school. Day 1 was a fight. It was an absolute battle to get her out of the door. We had everything that morning… it was hell. She eventually got ready… I can understand how upsetting it was for her, constantly being in this place where she just felt alienated.”
Isolated. Confused. Blamed. Punished.
By March, she was dead.
Today, the Government will publish its long-awaited Schools White Paper to address what it describes as a “SEND system in crisis.” We are publishing this report a matter of hours before it arrives. Not by accident.
Over the last two months, Measure What Matters. has been undertaking a forensic examination of the real impact of what we see as the systemic, serious maladministration of Special Educational Needs and Disabilities and their legal framework — by Local Authorities, and further downstream, by schools, children’s mental health services, and hospitals.
The purpose was to establish one unavoidable question:
What is the human cost when a child with Special Educational Needs is denied the education they are legally entitled to?
We have reviewed thousands of pages of evidence, including 1,253 detailed family testimonies, submitted directly to us and published in full today. This dataset alone now forms the largest published qualitative, primary source dataset describing the lived experience of families trying to secure support for their children with Special Educational Needs.
To ground and triangulate this data, we have also examined hundreds of official documents: Safeguarding Practice Reviews, Local Authority scrutiny papers, inquest reports, and — most devastating of all — Prevention of Future Death Reports. We have also reviewed multiple data sources including Department for Education statistics, the National Child Mortality Database, and Local Government and Social Care Ombudsman data.
Because this evidence tells a deeply uncomfortable story.
Not of an over-legalised system. Not of unreasonable parental demand. Not of a 'rigid', flawed legal framework. But of absolute legal duties repeatedly unmet by public services. Without consequence.
Of inappropriate placements.
Of excessive reliance on punitive measures.
Of vast and prolonged gaps in education.
Of professional evidence dismissed or ignored.
And above all, a system that has actively crippled itself, burying a thoughtful, needs-led, protective legal framework under layers of obstructive, bureaucratic local policies and processes designed to wrangle fiscal control over children's educational needs.
The result? Maladministration not the exception, but the operating model.
And children, quietly, catastrophically, paying the price
The Times today publishes a national investigation into the deaths of neurodivergent children and young people with SEND.
We welcome the scrutiny this brings to findings the system has never been built to surface.
Measure What Matters. is best known for doing something very simple, and apparently still unusual: taking lived experience seriously as data. For the past year, families across England have submitted testimony describing what they believe to be dishonest, unlawful, unethical, or harmful conduct by Public Bodies responsible for supporting children with Special Educational Needs and Disabilities.
These testimonies are not case studies selected for impact. They now form the most extensive, published qualitative record currently available in England documenting how families actually experience the administration of statutory SEND law in practice. In their own words, and published in full, so that Ministers, MPs and the public can examine it directly.
Every testimony has been anonymised, coded and thematically analysed. And it arrives at a moment of profound consequence — just hours before the Schools White Paper will set out sweeping reform proposals to the current legislative framework.
Over the course of the next twelve weeks, as this White Paper progresses through consultation, we will be issuing a series of investigations built on their findings. It remains our view that there is little regard being paid to the voices of those who are experiencing this system, and far too much emphasis on those who have failed in their duties to administer it. Leaked plans prioritise rhetoric over evidence, and ideology over experience. We are determined to ensure that the voices of those most failed by this system will be brought to the fore, and their evidence will not be set aside.
The first of our thematic investigations began with one startling finding.
Of the 1,253 testimonies analysed, 204 explicitly reference suicide, suicidal ideation, or repeated suicide attempts.
That is not a statistic to move past quickly.
It means that more than one in six of the families who submitted testimony — families who came to us specifically to describe maladministration by public bodies — described watching their child reach the point of wanting to die. These accounts do not describe mental health crisis as an isolated clinical event. They describe it as emerging after prolonged exposure to institutional failure — families repeatedly blocked, ignored, or exhausted while attempting to secure lawful provision.
When examining these accounts, the pattern is strikingly consistent. Difficulties are visible early — but not understood as needs, not acknowledged, not assessed, not acted on. Requests for support are denied or heavily delayed. As children become increasingly dysregulated, their behaviour is treated in isolation — not recognised as a warning indicator of deterioration. Punitive responses escalate: repeated sanctions, exclusions, internal isolation, unmanaged distress.
Attendance collapses. The child’s world shrinks. Their peers fall away. Their identity becomes “naughty”, “stupid”, “difficult”, “disruptive”, “too much.”
By the time crisis services become involved, the child is often already in end-stage distress.
One parent states: “As a young child our child was perfectly happy, but increasing pressure within education to meet certain statutory requirements crushed his spirit. He was always hugely practical and creative but struggled academically and socially. Bluntly, education made them feel stupid for most of the time and lacking in self-worth. We experienced incredible anxiety within our son and ourselves — my mental health suffered because I was made to feel as though it was my fault and that I was a failure as a mother.
Our child had terrible periods of self harm. Ironically, it was just as things appeared to be going well that our child made a choice to take their own life. This has been unimaginably devastating. The circumstances around their death are obviously complex but low self-esteem caused by an ongoing sense of never being good enough was embedded in our child’s educational experience from a very early age.”
Another describes:
“Both young people have been left without provision in unsuitable environments, where educators’ failures to support them has led to a slow and damaging loss of self-esteem and worth. They have been stigmatised, laughed at and called out publicly.
The result is a dynamic deterioration in their mental health, spiralling to the point of suicidal ideation. I never thought I would witness and have to stand down a child from making an attempt on their life, never mind two children and on more than one occasion.”
Every parent who submitted testimony was asked to describe the impact on their child.
One wrote two words: “They’re dead.”
Consistently, parents identify education as the first system to fail their child — and the one whose profound failure shaped everything that followed.
These testimonies established a clear hypothesis: that institutional maladministration of existing SEND legal duties — leading to prolonged educational neglect and associated trauma — acts as a powerful upstream driver of mental health crisis and suicide risk.
Not individual vulnerability alone. The system.
What we needed to know was whether that hypothesis was supported by independent statutory reviews, child death investigations, and national data.
It is.
Drawing on a wide range of public-domain sources — hundreds of safeguarding reviews, inquest findings, National Child Mortality data, Prevention of Future Deaths reports — we examined the reported educational experiences of 35 neurodivergent children and young people whose deaths, recorded between 2020 and 2024, were preceded by circumstances showing indicators of failures in education provision. 25 of these are referenced in our report.
In every case examined, their deaths were recorded as suicide or described as a self-inflicted death. In almost every case, what preceded them bore devastatingly similar characteristics.
While the final circumstances around a child suicide are often tragically multi-faceted, these children did not begin in crisis. They began in mainstream classrooms.
Across every case, the early pattern is the same. Difficulties emerge. Visible, documented, evidenced. They are not understood as special educational needs. They are not assessed. They are not acted on. Instead, the child is sanctioned. Isolated. Excluded. Or not seen at all — their distress rendered invisible to everyone except the parents and caregivers who were not heard. Or not believed. Their behaviour is treated as the problem, rather than as evidence of one. Attendance collapses. Academic progress stalls. The child’s world shrinks.
The case studies do not contradict the testimonies. They confirm them.
The same broad trajectory, fragmented in documentation but present, across 25 children and multiple different public authorities. That consistency of feature is not coincidence. It is pattern. It is systemic.
Every one of the children in our detailed case studies had a diagnosis of autism, ADHD, or both by the time of their death.
What is equally striking is how rarely any of this is formally named as what it is. Prevention of Future Deaths reports almost never record findings of statutory education failure — not because that failure is absent, but because inquests are not designed to look for it. They establish the facts of a death. They do not, as a rule, interrogate whether a local authority met its legal duties under the SEND framework in the years before.
Family circumstances are examined in detail. Educational history is not.
The result is a structural blind spot of staggering consequence.
Late-stage failure at the point of acute crisis — in CAMHS, in hospitals, in mental health services — receives scrutiny, recommendation, and reform. Yet the prolonged upstream failures that shaped a child’s vulnerability over years are left largely unexamined, and therefore unchanged.
And for some children, there is no scrutiny at all.
Within our review, we have identified five children — all with recognised Special Eduational Needs— whose deaths have generated no published safeguarding review, no Prevention of Future Deaths report, and no publicly accessible inquest findings.
As far as the official record is concerned, these children’s deaths do not exist as learning events. There is no document in the public domain that has asked, let alone answered, whether the statutory duties owed to them were being met when they died. Their names are not in any national database.
This is not exceptional. It is permitted — by design.
Consider what happens when other children in the state’s care die. A looked-after child dies: automatic notification to the Secretary of State and Ofsted. A care leaver dies, up to the age of 24: automatic notification. A death in custody: independent investigation, coronial scrutiny, ministerial oversight. The principle in each case is the same — that heightened statutory responsibility must generate heightened accountability when harm occurs.
An Education, Health and Care Plan is — or was, for the children in this report — a legal instrument. It placed non-delegable statutory duties on the local authority. It formally recognised a child’s vulnerability. It conferred enforceable rights. Under any rational system, the death of a child subject to an EHCP would trigger an automatic mechanism to ask: did the state meet its obligations to this child?
That mechanism does not exist.
When a child with an EHCP dies, the question of whether statutory education duties were discharged is not automatically asked, not automatically recorded, and not automatically scrutinised. Until April 2025, the national serious incident notification form did not even include a field for EHCP status. It has now been added. The system can, at last, count how many children who die had a plan.
It still does not have to examine why.
We also asked a simpler question: how many children with an EHCP have died by suicide in the last five years?
The answer is: unknown. Nobody is counting. Nobody has been counting.
Much has been said now on what this White Paper will put forward, so it is worth directly engaging with what the Government will say in its defence — because the argument will be familiar, and it will sound reasonable to those who have not looked closely at the evidence.
The Government will say the system is “broken”. That EHCPs take too long, cost too much, and leave too many families in conflict with the state. That mainstream schools are crippled with red tape and it is that, which blocks support. That the current framework creates adversarial dynamics that serve neither children nor local authorities.
Some of this is true.
EHCPs have taken too long. The tribunal system is overwhelmed. Families are in conflict with the state.
But the question the Government continues to sidestep — and which this report forces onto the table — is why.
Statutory assessments are required by law to be completed within six weeks of a request. They are routinely not.
Harm results.
Once a plan is issued, the local authority is under an immediate legal duty to secure the provision within it. That duty is persistently not met.
Harm results.
Decisions must be grounded in professional evidence — they are not.
Harm results.
And, of course, when families challenge these failures at tribunal, local authorities lose 98.7% of cases taken to hearing — not because the law is ambiguous, but because it is clear, and they breached it.
The system is not broken because the law asked too much. It is broken because those responsible for administering it decided, year after year, that funding was insufficient and therefore the consequences of systemic non-compliance with the statutory framework were acceptable. They buried their simple legal duties under layers of local policies and staggering administrative incompetence.
The Government is now proposing to resolve that problem not by enforcing the law, but by removing it. That is not a solution.
It is an absolution.
Within hours of this report being published, the Government will introduce a White Paper that will seek to remove EHCPs from the majority of children who currently hold them — consigning what was, for the children described here, their only clear, enforceable legal protection to the category of historical provision.
The stated aim is a reformed system — one where new tiers of less legally binding support, delivered “locally” within mainstream schools, replaces statutory plans for all but a narrowly redefined group of children with the most “complex” needs. “Inclusion” spaces — widely expected for many to mean a designated room in a mainstream school — will, the Government suggests, provide sufficient adjustment for the majority. For children whose needs fall below the new threshold, the EHCP will be gone. In its place: a lighter-touch document, a tiered framework, and currently, the vague reassurance that some form of legal protection will exist.
The Government has also signalled clearly that autism and ADHD — the diagnoses shared by every single child in our detailed case studies — will largely be treated as “predictable” needs, safely containable within a mainstream environment without the need for an EHCP. Children who would previously have been entitled to statutory assessment of their needs, and a needs-based, professionally informed, legally enforceable plan will instead receive whatever a school chooses or is able to provide.
We want to be precise about what this means.
This analysis shows a system that repeatedly failed to identify need, assess appropriately, secure provision, or respond lawfully when children with SEND catastrophically deteriorated to the point of suicide. It documents children — autistic children, children with ADHD — who became suicidal following years of prolonged educational neglect.
It documents a governance and accountability architecture so poorly designed that some of those children’s deaths have left no trace in the public record whatsoever. It documents a government that, until this year, was not even collecting the data that would allow it to know how many children with Special Educational Needs had died. Let alone how many of them were subject to statutory protections at the time of their death.
And today, that same government will stand up and announce that the current levels of legal protection which existed for those children —left unenforced and consistently obstructed even to those who needed it most — will be removed for the majority.
That is not reform.
It is the removal of the last lever families had to hold the system to account, and for many acutely vulnerable children, the last remaining protective factor from a system that was pushing them toward acute mental health crisis.
For children with autism and ADHD in particular, this will represent the formal embedding of an unevidenced, increasingly ideological position — that their special educational needs are predictable, manageable, mainstream — that the evidence in this report directly and repeatedly contradicts.
The EHCP was not a failing instrument and the Children and Families Act 2014 was not the problem.
The institutions who broke it were.
This Government has chosen to hollow out one and protect the other.
The scale of harm for children and young people described in this report is barely visible because the architecture was never built to see it. This White Paper will seek to wipe it away entirely.
Based on the information we have reviewed, every child in this report should have qualified for statutory assessment of their special educational needs. The evidence suggests statutory duties were engaged. Every child in this report would, under the current legal framework, have been entitled to the protections it affords.
Based on the information the Department for Education has shared to date, every child whose death we have documented here would likely have had those rights withdrawn. Along with hundreds of thousands of others — condemning and containing more children, quietly, in classrooms and inclusion rooms that cannot meet their needs, in a system with even less obligation to try.
The girl in the opening of this report was thirteen when September came around again.
She was dead by March.
She had an EHCP.
Its legally enforceable rights should have protected her. As of today, those rights look set to be extinguished.
Her name was Eivie.
Measure what Matters.
Measure What Matters. would like to express their gratitude to all families who have been involved in sharing testimony to support this project. We believe that the voice of lived experience must inform any meaningful reform.
The families represented here gave their testimony in the hope that it would matter.
We intend to make sure it does.
Detailed case reference mapping will be considered on request. All children have been anonymised in this report. Measure What Matters. are committed to handling source material with care, and to protecting the privacy of the children and families whose experiences are represented here.
Measure What Matters. All 1,253 family testimonies are published in full at: Measure what matters. – Empowering Constituents with Clear Insights on Local Government Performance
Measure what matters. 
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