Next Monday, 15th September, will be a landmark Day of Action for SEND families. Thanks to the more than 122,000 people who signed our parliamentary petition, MPs will debate SEND legal rights in Parliament. Some of our team will be in the public gallery, watching on.
On the same day, families and allies will gather in Parliament Square at 11:30am for a rally organised by Disabled Children’s Partnership and two parent groups. They will also be hosting an MP drop-in session before the debate, where campaigners will explain the law and the devastating impact of stripping away rights from vulnerable children.
Summer blues for SEND parents worse than ever
This is a particularly harrowing time to be a SEND parent (and campaigner). Every day, we hear from families in crisis, already worn down by the unrelenting nature of the summer holidays, when access to respite and short breaks is even more limited. Much of my own summer was spent fighting to save the only specialist holiday and after-school club in my local authority. Without the action of local parents, it would have quietly disappeared. This is the reality we live with: parents holding services together with sheer determination because, if we do not fight, our children lose everything.
This year, the pressure has been compounded by months of poor communication from the Government about its plans for changing SEND. The white paper has been delayed, while leaks have fuelled speculation that Education, Health and Care Plans (EHCPs) and statutory rights are on the chopping block. Ministers have publicly refused to commit to maintaining EHCPs. Their initial response to our parliamentary petition on SEND legal rights didn’t even mention the law. Although a revised statement says that there will “always be a legal right to additional support for children with SEND”, there is no mention of statutory plans or vital individualised support. It is vague to the point of being meaningless, and will not reassure anyone who understands what is at stake.
Updated petition response
“There will always be a legal right to additional support for children with SEND. No decisions have been made on changes to legislation. We are engaging with families on improvements to SEND provision.
As part of our Plan for Change, we are determined to improve the system of support for children with SEND and their families. We are working to restore families’ trust by ensuring early years, schools and post-16 settings, have the tools to better identify and meet need earlier and ensure more children and young people can receive their education in inclusive mainstream settings with their peers.We are committed to:
• ensuring a legal right to additional support for children and young people with SEND;
• ensuring all children and young people have the support they need to achieve and thrive;
• improving inclusivity and expertise in mainstream schools, as well as ensuring swift access to special schools for children and young people with the most complex needs; and
• restoring confidence in the system of support for children and young people with SEND so that they all get the chance to achieve and thrive in their education.Any changes we make will improve support for families, stop parents from having to fight for support, and protect effective support currently in place. Details of the government’s intended approach to strengthening the SEND system will be set out in a Schools White Paper in the autumn.As part of developing our approach, we are working with parents and young people, organisations which represent parents, local authorities, SEND organisations and education settings across the country, as well as sector experts. We share the widespread view that improvements to the SEND system are badly needed. The forthcoming consultation on the White Paper will be key to shaping the reforms to the SEND system, so that every child and young person can achieve and thrive and we continue to break down barriers to opportunity.”
Department for Education
An all-out assault on disabled people
As if this uncertainty was not enough, the right-wing think tank Policy Exchange recently published the most explicit attack on statutory rights yet, openly recommending EHCPs be scrapped entirely and barriers to Disability Living Allowance (for children) be increased. As our article says, it was endorsed by Jeremy Hunt MP, who oversaw the decimation of CAMHS funding. He didn’t acknowledge his government’s actions as central to the resulting crisis in unsupported mental health and neurodivergent conditions.
Then Reform UK joined the assault claiming the SEND system is being abused by manipulative parents, leaning on the old chestnut of SEND transport costs as so-called “evidence” of these claims. Clearly no understanding that massive transport costs stem directly from a fundamental failure to build the right settings in the right places. Reform’s wannabe “Dear Leader”ignorantly misrepresented the disability benefits system, despite admitting he has no ideas for improvements. In his world, GPs can be coerced into placing a young person on a “disability register” whereupon they immediately get free cash. Every SEND parent knows this is nonsense; most of the public does not. Taking a leaf from the MAGA playbook, Reform is exploiting that ignorance. Once again, the victims of the destruction of public services shoulder the blame, and most people don’t know any better (until it happens to them).
Despondent but not (yet) destroyed
It is no wonder that parents are despondent. Within our support networks, the utter exhaustion is palpable. Messages go unanswered. Parents confide feelings of total despair to those who understand, but who are least able to offer any practical help. The despair is completely understandable. The worry is, if we are struggling this much now, how will we cope if our already fragile supports are stripped away?
And yet, despite it all, SEND parents keep in keeping on. We are the most resilient of people. Such world-class resilience, that schools extolling it as a virtue to pupils, should invite SEND parents in to demonstrate it. We deal with challenges that would destroy most people, and still we get up each morning, ready to do it again, even when we are ill, in pain, or both. Many of us also donate spare minutes and odd hours of our spare time to campaign and support others who cannot fight for themselves.
Key Content
They want us on our knees
But let us be clear: the exhaustion is the point. The last year has been relentless, with attacks coming from every direction. It’s as if they’re hoping if we’re worn down enough, we will give up and allow devastating changes to be pushed through quietly. Local authorities are doubling down on unlawful behaviour and with scurrilous reports, aimed at breaking us, all so they can be freed from the statutory duties they resent with minimum resistance.
They’re mistaken; we are unbreakable when it comes to defending the protections that make education, health, and care accessible for our children.
We already have the Children’s Wellbeing and Schools Bill to contend with. The coming weeks and months will bring the Schools White Paper, the outcome of the Education Select Committee SEND inquiry, the Law Commission’s recommendations on children’s social care, the ongoing nightmare with disability benefits and the Welfare Bill, the Down Syndrome Act consultation, and the just-out revised Ofsted framework. Each could reshape the landscape of rights and protections for disabled children and young people in its own way. There will be more attacks from politicians and others who do not understand the system, and refuse to admit how government policy, poor culture in public bodies, and chronic underfunding effectively derailed the Children and Families Act and manufactured the SEND crisis we now are living through.
Those who say only the most “severe” children with SEND should have EHCPs will soon find that without the right support, needs will worsen and far more children will indeed develop “severe” needs—not least because LAs will decide what they think ranks as severe.
We cannot let this happen.
That is why now, more than ever, our children’s stories and the stories of families must be told. We must be louder than those who wish to silence us. We must shine a light on the injustice and the daily failures families face while managing difficulties that are unfathomable to most. While we fight for the things others take for granted, we are painted as unreasonable and accused of abuse of a system by those who will never face a fraction of our challenges. This must end now.
What you can do now
This is our chance to be heard. It’s time to show that, no matter how much they throw at us, we will not give up. We know you are hard-pressed. We know you are exhausted. The actions below are listed in order of effort required.
- Sign and share the petition. Over 122,000 people already have, but every additional signature strengthens our message that these rights are not negotiable.
- Spread the word. Share this post and campaign across your networks, encourage others to join us, and keep the spotlight firmly on SEND.
- Take part in the photo and video campaign. Post an image or short clip of you and your family with the hashtag #SaveOurChildrensRights. Tell the world why these rights matter and why they must be protected.
- Write to your MP. Use IPSEA’s template letter to tell them why this debate matters. Tell them you want them to show up and speak up on September 15th to defend SEND rights. Personal stories are powerful and they need to hear yours.
- Join the rally in Parliament Square on Monday 15th September at 11:30am to show that SEND families will not be silenced.
They don’t want to hear us. They want us to be quiet. They want us to be too tired to resist. But we are still here. We are still fighting. And we will not stop.
Our children cannot afford for us to give up. This fight is not optional. It is about defending their future, their dignity and their right to an education and support that meets their needs.
Our message is simple: our children’s rights are not up for debate
You can find everything you need to join in with the Save Our Children’s Rights campaign on our website – head over and complete these actions;
Disabled Children’s Rights are Under Attack.
We’re fighting, but we can’t do it alone: we need your help more than ever.
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Also read:
- Save Our Children’s Rights: Join our campaign to head off an assault on EHCPs, backed by 100 signatories including Chris Packham and Christine McGuiness
- Education Secretary: Disabled children’s “current” rights won’t be removed. But council proxies keep pushing to trash entitlements
- SEND accountability: The law for disabled children’s education isn’t optional, IPSEA reminds the SEND Inquiry
- 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
- What’s the law when a council says it can’t comply because of resource issues, though it’s “trying its best”
- What can the SEND Tribunal do if a local authority misses an EHCP appeal deadline? A case study.
- Dying to be seen: Why is it so hard to get help from CAMHS? By Carrie Grant MBE
- 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”
- WEBINAR RECORDING: Will school SEND funding be ringfenced? Minister Gould said so, but does she understand what that means?
- WEBINAR RECORDING! The legal implications of the Schools White Paper’s SEND Proposals
- SNJ in Conversation with Brian Lamb OBE: Building good parental relationships is the key to fixing SEND
What kind of government is “bold” enough to scrap statutory EHCPs from vulnerable children?May 16, 2025
The SEND reforms in the Schools White Paper reveal rights given, and rights stripped awayFebruary 24, 2026
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Since then, Rachel has volunteered supporting local families through the EHCP and appeal process. She is passionate about the legal rights of disabled children and empowering parents to challenge unlawful decision making.
Rachel previously worked in publishing and international events before setting up her own business as an artist and tutor. For the last six years she has worked in co-production, predominantly within maternity and reproductive health, and strongly believes that SEND services should be designed alongside those accessing them.
Rachel founded local campaign group BCP Alliance for Children & Schools (www.BCPACS.uk) bringing together parents, education staff and unions to campaign against funding and service cuts within education. She also started the national Stop Safety Valve campaign
- Focusing on ADHD and autism diagnosis won’t cut costs and wastes money that should be spent on urgent support - December 9, 2025
- ADHD and Autism Right To Choose referrals paused as at least nine NHS areas tell providers to stop booking assessments - November 28, 2025
- Challenging SEND misinformation, one radio interview at a time - November 12, 2025
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