And John Harris, journalist, author, parent of autistic young person
The basic legal rights of children with Special Educational Needs and Disabilities (or SEND) are under threat. Today, SNJ is a leading member of a new campaign being launched to “Save Our Children’s Rights”, that’s kicked off with a letter we have had published in The Guardian, which has been signed by 100 SEND-related groups and organisations, celebrities and notable disability campaigners, and disability-focused academics. The celebrities include Chris Packham, Christine McGuiness, and our friend, Carrie Grant. As well as SNJ and our honorary team member, John Harris, our campaign is led by IPSEA, Rachel Filmer’s SEND Rights Alliance, Learning Disability Today, SOS!SEN, SEND National Crisis, and Child Autism UK.
It follows the parliamentary petition we have promoted, which now has almost 110,000 signatures (keep signing!), securing a parliamentary debate on the issue.
We have launched a new website for the campaign that you can find here. On the website, you can find out how you can help by sharing a photo on our template of how your child’s EHCP has helped them.
Are we scaremongering?
On what do we base this belief that rights are at risk, when nothing has been announced? Are we scaremongering as some have suggested? If you’ve seen our recent articles about comments and briefings from government advisers and officials, plus Minister Catherine McKinnell’s appearance before the Education Select Committee, you will have seen the DfE is thinking about ditching EHCPs in mainstream schools, and repeated refusals to guarantee EHCPs will continue in the upcoming Schools White Paper.
We aren’t going to sit around and wait for it to happen and, if you care about children and young people with special educational needs and disabilities (SEND) neither should you.
A brief recap on rights
In 2014, the Children and Families Act replaced old statements of SEN with education, health and care plans (EHCPs) An EHCP is a document that describes a child or young person’s education, health, and care needs and the support that will help them to fulfil their potential. It places duties on local councils and schools that are legally enforceable by the Ministry of Justice’s SEND tribunal. The most important parts of the special educational needs system have worked this way for over 40 years.
Plans can run from birth to the age of 25. In recent years, the number of plans has been increasing because in an unreliable and under-resourced school system, they are often the only chance families have of getting the support their kids need. Just under 640,000 children have EHCPs, according to latest figures. Contrary to cliches about “pushy parents”, our research showed official data shows the vast majority of requests for EHC plans are made by schools and colleges.
One MP said: “This could be a massive problem. We are hoping there will be proper engagement around it, but we are worried about some of the signals we are picking up.”
Another said: “People are really, really worried about this. It is one of the things that is going to make people feel very, very uncomfortable.”
The letter published in the Guardian is evidence of growing public concern, despite reassurances from the education secretary, Bridget Phillipson, that no decisions have yet been taken about the fate of EHCPs.
From The Guardian story
About the campaign
We have started the Save Our Children’s Rights (SOCR) campaign because we’re increasingly worried about what the government is planning, as it readies new schools’ reforms. Ministers say they want to drastically change the whole SEND system. Local authorities and their proxies are calling for a huge reduction in EHC plans and the rights they embody, to relieve them of responsibilities they often find costly and troublesome. Government insiders are floating the idea of restricting rights to families with children in special schools.
These proposals fit with a general drive to cut costs and save money. They sometimes seem to be based on the flimsy idea that children’s needs can be easily divided into ‘severe/complex’, ‘moderate’ and ‘mild’. Provision can be withdrawn or weakened accordingly. There are worrying echoes of the current fashion for talking about “overdiagnosis”. The suggested moves also sit alongside plans to cut benefits for disabled people, which suggests something particularly alarming: that not nearly enough people in power understand and empathise with people who have disabilities and special needs, whether they be children or adults.
Most of the people involved in SOCR have direct experience of how important EHCPs and the powers of the SEND tribunal are. For families used to unreturned phone calls and constant excuses, they are the only way of holding people in authority to account: It is no exaggeration to say EHCPs and the law allow thousands of parents and carers to sleep at night.
Moreover, many of us have seen the difference that provision delivered as a matter of legal right can make. It ensures many of our children can learn to read and write, take formal qualifications, or simply participate in the life of their school. In other words, EHCPs may look like dry legal documents, but they can be the raw material for fulfilling and happy lives.
You can find our organising group below.
Everyone in this group has worked incredibly hard and in a short space of time. And we’re just beginning. Again, to find out how you can help with our What My EHCP Means to Me photo campaign, visit the SOCR website
The law isn’t the issue
All of us know about the current system’s failures and shortcomings. Last year, just 46% of EHCPs were produced within the statutory 20-week timescale. Families are often faced with a huge gap between the provision their child is meant to receive and what they actually get, which entails the need to constantly fight. But the problem here isn’t the law—it’s that the law isn’t being followed or adequately enforced.
Some SEND issues have been crying out for action for years. A crisis of the recruitment and retention of Teaching Assistants and other support staff needs to be addressed. The same is true of paltry numbers of Speech and Language and Occupational Therapists. SEND training for teachers is patchy at best, though there are changes to initial teacher training on the way, and the government funds a training programme that more settings need to take up. There is a shortage of specialist schools, and profit-making companies have moved to fill the gaps. Early Years provision is in a broken-down state, leaving children without meaningful support in some of their most crucial stages of development.
Increased funding for special needs education and fresh approaches could mean SEND provision in schools eventually improves. In the future, hopefully, some families will feel they can get what their child needs without an EHCP. But any such improvements will take a long time to materialise, so the prospect of kids’ rights being taken away on the vague promise of upgrades to the SEND system is unthinkable.
Particularly in mainstream schools, a reduction or complete snatching-away of EHCPs would threaten the basis of huge swathes of provision. It will likely lead to children either being forced into specialist schools—which is the opposite of what the government says it wants to achieve, on-site special units or resource bases staffed by teaching assistants, bouncing in and out of alternative provision, or even greater numbers falling out of formal education altogether. Even if EHCPs were only retained for families who currently have them, we fear that such a shift would give councils license to weaken the provisions of those plans at every annual review, and prematurely end them.
Whatever the SEND system’s problems, the answer is not to prioritise the demands of local politicians and bureaucrats over the rights of children and young people. Families cannot afford to lose the precious legal protections they have. But they and their children and young people are well used to passionately making their case, and if the current proposals become concrete plans, that is what ministers will have to contend with.
What do we want?
- No rolling back of the existing legal rights of children and young people with SEND
- A commitment that reform of the system will not include any dilution of the law
- Government plans for inclusive mainstream to be implemented within the existing legal framework
This last point is not to say we do not support any legislative change. SEN Support being placed on a statutory footing would be a positive change.
So today, we throw down the gauntlet: If the Government is so convinced plans for “inclusive mainstream” are sufficient, and if ministers have faith families won’t need to exercise legal rights to have their child’s needs met, why would you bother with expensive legal change? Leave the law as a backstop that should—if their plans bear fruit—rarely be needed.
How to get involved
If you want to actively get involved, fill in the form here to register as a volunteer, whether you’re an individual or a group/organisation. We are working on ways to help everyone feel they have a part to play.
Save Our Children’s Rights open letter
The letter echoes what we have written above.
- You can download it as PDF here.
- You can also download our press release and share it with your local media, along with your own thoughts. If you would like it as an editable word doc, let us know
- Find the letter in the Guardian here
- Find the Guardian story here
Save Our Children’s Rights Organising Group
- Special Needs Jungle Ltd, parent-led SEND website (Tania Tirraoro, Renata Blower, Gillian Doherty, Dr Sharon Smith)
- IPSEA, SEND legal advice charity (Catriona Moore, Emma Brock)
- SEND Rights Alliance, parent group (Rachel Filmer, Jay Filmer (webmaster))
- John Harris, journalist and SEND parent
- Learning Disability Today, disability magazine (Alison Bloomer)
- SOS!SEN, SEND legal support (Eleanor Wright)
- SEND National Crisis, parent group (Sharon Pratt Dawson)
Celebrities/notable disability campaigner signatories
- Carrie Grant, Broadcaster, campaigner, SEND parent (special thanks to Carrie for her support)
- Chris Packham, Naturalist and neurodiversity campaigner
- Christine McGuiness, broadcaster, campaigner and SEND parent
- Jane Asher, President, National Autistic Society
- Cherylee Houston actor, campaigner
- Baroness Campbell of Surbiton, Crossbench peer, disability rights campaigner
- Dame Stephanie Shirley CH, autism philanthropist, businesswoman
- Sally Phillips, actor, campaigner
- David Mitchell, novelist, SEND parent
- Melissa Simmonds, autistic campaigner, SEND parent
- Peter Stefanovic, Lawyer & CEO Campaign for Social Justice
- Baroness Sheila Hollins, Peer, SEND parent
- Dr Anna Kennedy OBE, SEND parent, campaigner
- Dr Tony Lloyd, former CEO ADHD Foundation
- Dr Virginia Bovell OBE, writer, founder of Treehouse school
- Frances Akinde/InclusionHT, author, former headteacher, SEND parent
- Hayley Newman, SEND Blogger/author
- Ian Birrell, journalist, campaigner
- Jim Blair, campaigner, Learning Disability advisor to WHO
- Paula McGowan OBE, campaigner
- Professor Sara Ryan, campaigner
- Professor Tom Shakespeare, The London School of Hygiene & Tropical Medicine, campaigner/author
- Baroness Rosa Monckton, campaigner, parent
- Steph Curtis, SEND blogger, author
- Stephen Unwin, parent, playwright, campaigner
- Saba Salman, disability journalist, campaigner
- Scarlet Page, photographer, SEND parent
Organisational /parent group Signatories
- Afasic
- Amaze
- Ambitious about Autism
- Autism Action
- BiLD
- Brainwave
- Campaign for Disability Justice, Inclusion Barnet
- Child Autism UK, charity (Suzy Yardly)
- Connect Parent Support
- Contact
- Disability Rebellion
- Disability Rights UK
- Disabled Children’s Partnership
- Down’s Syndrome Association
- DS Achieve
- Educational Freedom
- Ehlers Danlos Society
- Extraordinary Links
- INFACT
- International Coaltion Against Restraint and Seclusion (ICARS)
- Kids
- Learning Disability England
- Mencap
- NASS National Association of Special Schools
- National Autistic Society
- NDCS
- Nurturing Affective Care
- PDA Society
- Phoenix Education Consultancy
- PRUSAP
- Reaching Families
- Restraint Reduction Network
- Reverse Rett
- RUILS
- SeeAbility
- SENDAGENDA
- Sense
- SNAAP (Special Needs Advisory and Activities Project)
- Speech and Language UK
- TCES
- Ups and Downs Southwest
- Vocal Advocacy
- Voluntary Organisations Disability Group
- Whizz Kids
- BCP Alliance for Children and Schools
- BCP EHCP Support
- Bristol SEND Justice
- DSPCC (Devon SEND Parents and Carers for Change)
- FACSA
- Hackney SEND
- Housing Inclusion Hackney
- Isle of Wight SEN Support
- North Worcestershire Autism Parents Support Group
- SEND Action
- Supporting SEND Parent Carers Kent
- The National Organisation for FASD
Academics in the disability field signatories
- Sir Simon Baron-Cohen, Autism Research Centre, University of Cambridge
- Professor Katherine Runswick-Cole, Chair in Education, The University of Sheffield
- Dr Damian Milton, Senior Lecturer in Intellectual and Developmental Disabilities, University of Kent
- Dr Mine Conkbayir MBE, Early childhood neuroscientist, author
- Dr Emma Ashworth, Associate Professor in Child and Adolescent Mental Health, Liverpool John Moores University
- Prof Elizabeth Pellicano, Professor of Autism Research, UCL
- Prof Luke Clements, Cerebra Professor of Law and Social Justice at the School of Law, Leeds University
- Dr Kieron Smith, Author and SEND parent’
- Dr Louise Platt, Faculty of Business and Law, Manchester Metropolitan University
- Dr Lucy Series, Associate Professor in Social Care Law and Policy, University of Bristol
- Dr Seamus Byrne, Reader in Law, Manchester Law School
- Dr Sophie Boyron, Associate Professor in Law, University of Birmingham
- Prof Angela Hassiotis, Professor of Psychiatry of Intellectual Disability, UCL
- Prof Lucy Bray, Professor of Child Health Literacy, Edge Hill University
- Professor Amel Alghrani, School of Law and Social Justice, University of Liverpool
- Professor David Abbott
- Beth Tarleton M.Phil, Senior Lecturer in the School for Policy Studies, University of Bristol
- Rachel Ryan, Senior Lecturer and Online Widening Participation Lead at The University of Law
Disabled Children’s Rights are Under Attack.
We’re fighting, but we can’t do it alone: we need your help more than ever.
We’re volunteer-run, but costs are rising. To help us keep going, please consider a one-off or, if it’s possible, a regular donation.
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- 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”
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- 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
- Have your say on the future of transport for disabled children and young people - August 25, 2026
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