By Melissa Hayhurst, SEND parent
SNJ Intro: Later today, we’re hosting our webinar with the SEND Minister, Georgia Gould MP (Details here). Our first question will be obvious: her response to last Friday’s issuing of a judicial review into the consultation, now entering its final week. (You can find our help to respond to the consultation here.)
Melissa Hayhurst, acting as the litigation friend for her disabled daughter, Jessica, sent a pre-action letter via her solicitors, Rook Irwin Sweeney earlier this year. You can read about the initial letter here that here. The Government’s lawyers responded, saying the DfE had “already decided” on the legal changes and they weren’t up for discussion—read that here. Then the saga takes a farcical turn when the DfE backtracks, saying their lawyers had somehow got the wrong end of the stick and everything was up for consultation, even though there were no consultation questions about it, which you can read about here.
On SNJ today, Melissa Hayhurst herself has written about why she decided to take action, and what comes next. We start with a quote from the lead solicitor, Polly Sweeney of Rook, Irwin, Sweeney:
“These reforms, if taken forwards, will fundamentally weaken existing legal rights and protections. The consultation does not make that clear and does not ask any questions on these radical proposals. The claimant will argue through the judicial review claim that the consultation has gone clearly and radically wrong, and that it is so unfair as to be unlawful”.
Polly Sweeney, Rook, Irwin, Sweeney
“Families deserve an open, honest and meaningful SEND consultation process.” By Melissa Hayhurst
There is a school two roads away from where we live. It was one of the reasons we moved where we did. It’s a mainstream primary school full of children in oversized jumpers, parents balancing coffee cups at the gate and the normal chaos of childhood. When Jessica was little, I used to walk past and imagine her there too. It felt ordinary in the best possible way. It was the kind of future you assume your child will have. Before disability changes everything.
One day, years later, the headmistress called me. Her voice was kind, hesitant, almost apologetic. She said she was so sorry, but she had seen Jessica’s Education, Health and Carae Plan (EHCP) and the school would not be able to meet her needs. My child needed a specialist setting. Of course I already knew that.
“A constant battle for survival”
I hadn’t woken up one morning and discovered this had all been a bad dream. That my daughter hadn’t really gone from developing normally as a baby, to regressing at 18 months old, losing all her communication and becoming profoundly mentally disabled. I hadn’t imagined the years of specialists, sleepless nights, assessments, therapies and fear.
I already knew my daughter would need 24-hour one-to-one care for the rest of her life.
But the local authority insisted we prove it. Why didn’t we want to consider a mainstream school?
That moment taught me something I have since heard echoed by countless SEND parents: having a disabled child often means living in a constant battle for survival. Not only survival for your child, but survival for your family, your mental health, your finances, your marriage and your friends and mostly your hope for the future.
Overnight, everything becomes a fight. You fight to be believed. You fight for assessments. You fight for therapies. You fight for school placements. You fight to explain your child’s needs to professionals who may have met them for only 45 minutes, but somehow feel qualified to decide their future.
And at the heart of it all is your child, who cannot advocate for themselves.
The proof is evident, but apparently, the paperwork is matters more
What kind of proof did we need to show that Jessica should attend a small, specialist setting with a 1:1?
Was it proof that at five years old she wasn’t toilet trained? That her pica was so severe she would eat her own faeces if left unsupervised for moments? Was it proof that her self-injurious behaviours became so extreme when dysregulated, that she ripped out chunks of her own hair, smashed the glass in our front door with her head, and clawed at her skin until she bled all over?
Or was it simply proof that she is a vulnerable little girl who deserves safety, dignity and the chance to learn even the most basic life skills. And that, as her parents, we are most likely the best “experts” to know what she needs.
Jessica has an eating disorder linked to her profound autism and sensory needs. It’s something that impacts every part of daily life, bringing with it another layer of fear, management and exhaustion. No one can eat, prepare, or even hold food near her without it causing extreme distress. We don’t eat at home while Jessica is awake, to protect her. We would, like all parents, do anything to protect her from harm and distress.
The enormous joy and avoidable heartache of parenting a disabled child
Yet despite everything she faces, Jessica is funny, affectionate, mischievous, and incredibly clever in her own way. She makes us laugh and brings enormous joy to our lives. I love her with a depth I cannot properly put into words and I am endlessly proud of every tiny thing she achieves in a world that was not built for children like her.
All I have ever wanted is for her to have an opportunity to thrive in the way she is capable of thriving. To be understood by people trained to understand children like her and to be safe. That should not require a legal battle.
Yet despite the profound nature of Jessica’s needs, I first had to instruct solicitors when she was just three years old. The local authority had initially refused even to assess her for an EHCP, despite a formal diagnosis being presented. When an EHCP was eventually issued, it was vague and inadequate, lacking the specific provision she required. We fought again and again through annual reviews and mediations just to secure the therapies, support and specialist environment she needed.
“Equality cannot only apply to people whose who are easy to accommodate or easier for society to understand.”
Melissa Hayhurst
Society true value of a llife is not monetary
Over time, I realised something deeply uncomfortable: society is often more willing to discuss the cost of children like Jessica than their value.
The conversation around disabled children too often centres around budgets, pressure on services and what support costs the state. Rarely do we talk about what these children deserve as human beings. Rarely do we ask what equality and inclusion should actually look like for children who may never live independently, never speak, and never fit neatly into society’s idea of productivity.
Jessica is not a problem to be managed or an expense to be minimised. She is a child with preferences, emotions, humour, fear and joy. A child who deserves safety, the right specialist education, and dignity just as much as any other child.
Equality cannot only apply to people whose who are easy to accommodate or easier for society to understand. Real inclusion means recognising the humanity of disabled children even when their needs are expensive, complicated and lifelong.
Why mainstream just isn’t possible for some children, and why EHCPs are vital
Eventually, after years of fighting, Jessica secured a place at a highly specialised independent special school in London. She travels two hours a day because it is the closest suitable placement that meets her needs.
People often ask why she cannot simply attend a local school. The answer is because profound disability doesn’t sit in an easy box (or seven separate, categorised boxes). Jessica’s sensory needs are so complex that she struggles even in highly controlled low-stimulus environments. A mainstream classroom would not be just unsuitable; it would be dangerous and traumatic for her.
Without the legal protections contained within her EHCP, I genuinely do not know where we would be now. Her specialist therapeutic programmes are finally starting to make a difference, and we are seeing small but incredibly important steps forward. Jessica is now able to use the toilet independently, something we are enormously proud of. For many parents that may sound ordinary, but for us it represents years of work, patience, specialist support and the right provision finally beginning to help her progress.
One battle after another
But the fight never really ends. As Jessica’s profound autism and complex needs continue to evolve there has to be ongoing and regular dialogue about whether her school can continue to meet her needs long term. We may eventually face the devastating reality of needing a residential placement or a bespoke education package.
This is the reality of parenting a profoundly disabled child: there is no finish line. No point where you finally exhale and know everything will be fine.
When things are good with Jessica, my world steadies. My mental health steadies and a glimmer of hope returns. A calm journey to school, a moment of connection, a successful day – these things become enormous victories.
But the difficult moments can swallow entire weeks. Sometimes months and can sometimes be so suffocating I wonder if I’ll ever catch my breath again.
The relentlessness of caring and profound disability is hard to explain unless you have lived it. It is the exhaustion of hypervigilance. The grief of watching your child hurt themselves because they cannot communicate. The fear of the future and the crushing knowledge that your child will likely always rely on other people to keep them safe.
That is why the current debate around SEND reforms matters so deeply to me.
The SEND reform proposals are extraordinarily complex
I have worked in communications and campaigning for over 25 years. Twenty years of that has been in the legal sector, including five at the Law Society of England and Wales. Prior to that it was mostly political comms. I am accustomed to reading consultations, understanding policy and analysing legal language.
Yet when the Government published its SEND consultation, I struggled to understand the scale of what was being proposed and the complexity of the language being used. The public messaging suggested positive reform, but it was only through conversations with lawyers, campaigners and SEND families, that I realised how many existing legal protections children like Jessica could lose.
I believe meaningful consultation relies on transparency and trust. Families cannot engage properly with reforms of this scale if they are unclear about what is genuinely being proposed and what protections could potentially be lost.
Children like Jessica cannot advocate for themselves and rely entirely on the adults, systems and legal protections around them. For many families, those protections are not theoretical. They are what stand between a child receiving the education, care and support they need, or being left without it.
We are facing a dreadful dilution and loss of existing legal rights
My belief is that the Government’s SEND reforms, if adopted, will dilute existing legal rights in many material ways. This includes the loss of several existing rights of appeal to the Tribunal, a radical reduction in the Tribunal’s powers, and fundamental changes to the enforceability of rights to individualised special educational provision.
I know there is enormous distress and disappointment within the SEND community that changes with such profound consequences appear to be progressing without families being given clear explanations about what is being proposed and the rights and safeguards that could potentially be lost.
What the judicial review legal challenge means
You may have read that last week, Jessica and I, as her mother and litigation friend, are asking the High Court, through her legal team, acting with the benefit of legal aid, to quash the consultation. If she is successful, the Government would not be able to rely upon the current consultation process.
On behalf of all families who wake up fighting every single day and have no energy for anything else, I want you to know that on behalf of Jessica and the community we will take this fight wherever it needs to go.
We believe families deserve a consultation process that is open, honest and genuinely meaningful. One that properly explains what is being proposed, allows parents to fully engage with the implications and gives them confidence that their voices, concerns and lived experiences are truly being heard before decisions of this scale are made.
Because children like Jessica are not a cost to society. They are part of it and until equality and inclusion truly includes disabled families, we still have a very long way to go.
Further infomation:
- Jessica is represented by Polly Sweeney and Beth Parr of Rook Irwin Sweeney, who have instructed Steve Broach KC and Eleanor Leydon of 39 Essex Chambers.
- The Claimant’s grounds of claim can be found here (PDF)
- Please contact Polly Sweeney at polly.sweeney@rislaw.co.uk for press enquiries
- Legal challenge launched against government SEND proposals that “significantly weaken the legal rights of children and young people”
- The Government doesn’t care about your views of the SEND Tribunal—it’s already decided to kneecap it. We must not accept it
- DfE backtracks over consulting on planned SEND legal changes. Parents MUST respond to the consultation to say Not in Our Name!
Disabled Children’s Rights are Under Attack.
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Key Content
Also read:
- Beyond EHCPs: Why Inclusion Needs More Than a Document
- The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reforms
- How health and family support systems are failing children starting school
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals
- When things go right: Shining a light on SEND Practitioners making a positive impact [Giveaway!]
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- Have your say on the future of transport for disabled children and young people
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Top Tips for the EOTAS & EHCP consultation: Protect your child’s rights to statutory SEND support
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them”
- Why my daughter’s SEND experience means we’ll take this consultation judicial review fight wherever it needs to go
- Legal challenge launched against government SEND proposals that “significantly weaken the legal rights of children and young people”
- The law on SEND HAS NOT changed! But restricting EHCPs would be legally-sanctioned gatekeeping and a decimation of rights
- Why the Human Rights Act matters when advocating for your child with SEND
- Why legal aid may now be available for SEND families challenging school exclusions
- When the LA wants to cease to maintain an EHCP: The law and some top tips
- GIVEAWAY: Making Lawful Decisions by Victoria Butler-Cole KC and Steve Broach KC
- Post-16: mental capacity and the SEND Tribunal
- Does the SEND Tribunal have to pay attention to the views, wishes and feelings of the child?
- Four practical tips for enforcing the ‘absolute duty’ to secure special educational provision in EHCPs
- What’s the law when a council says it can’t comply because of resource issues, though it’s “trying its best”
- New School Transport Guidance ignores both equality and case laws protecting disabled learners
- What can the SEND Tribunal do if a local authority misses an EHCP appeal deadline? A case study.
- How well is the Government respecting children with SEND’s right to education?
- Will non-statutory National Standards improve SEND or just create confusion and more unlawful behaviour?
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- The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reforms - September 9, 2026
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals - September 3, 2026
- From suspicion to support: why the Government’s child protection reforms matter for disabled children - August 28, 2026
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