On Thursday 10th September 2026, over 50 charities and organisations sent an open letter to the Prime Minister calling on the Government to urgently reform disabled children’s social care.
Add your voice and back the call to fix disabled children’s social care here.
An open letter to the Prime Minister on disabled children’s social care
Dear Prime Minister,
We are writing as disabled children, young people, parents, family carers, siblings, charities, professionals and organisations who share your ambition to urgently fix social care – specifically for disabled children and young people.
Over 1.8 million disabled children and young people live in the UK. Too many of their childhoods are shaped by a social care system that is confusing, inconsistent and too often absent when families need it most. Many parents tell us they must reach crisis point before help is even considered. Others are too afraid to ask at all, worried they will be judged and separated from their child, rather than supported.
The consequences can be devastating. Coroners have raised concerns about failures in social care support for disabled children and their families through Prevention of Future Deaths reports. Families should be able to access the support they need before they reach breaking point.
Parents have told us:
“Many nights I have gone to sleep thinking it would be better if I never woke up. I felt so low I had to have therapy. My wife has struggled with having to give up her job and be forced into the role of carer because we can’t have the help we need with two disabled children.”
“With every contact, it kind of makes you feel like you’re asking the impossible. Like I’m begging for something that’s completely unreasonable.”
“There’s this inherent fear that social care will take your children away, so we’re not going to contact social care even though we have a disabled child, we’re on our knees, it’s such a struggle.”
Every disabled child should have the support they need to reach their potential. That means practical help with everyday activities such as washing, dressing, eating, communicating and moving around, as well as short breaks, support at home and guidance for families so they can care for their child with the right support.
Disabled children become disabled adults. The support they receive in childhood can shape their ability to live independently, participate in their communities, move into employment and achieve their ambitions. We must start by giving children and families the right support from the very beginning.
The Law Commission has made clear that the legal framework for disabled children’s social care is outdated, fragmented and no longer fit for purpose. Its recommendations give the Government a once-in-a-generation opportunity to build a system that is simpler, fairer and centred on children and families.
While the Casey Commission considers how to fix adult social care, some of the work on disabled children’s social care has already been started. The Law Commission has set out clear recommendations for reform. Now the Government needs to act.
We are therefore disappointed that the Government is delaying publication of its plans to implement the Law Commission’s recommendations. For families already struggling without the support they need, further delay has real and immediate consequences. The time for action is now.
This is about more than changing the law. It is about changing childhoods.
We urge your Government to implement the Law Commission’s recommendations to bring children’s social care into the 21st century, working alongside disabled children and families to design a simpler, fairer system and publishing a clear timetable for change. Please ensure that any additional time is used to strengthen the Government’s plans rather than simply delay change.
Prime Minister, you have said social care reform should be a defining test of your Government. That must include support for disabled children and their families.
This is your opportunity to replace a system rooted in struggle, shame and suspicion with one built on support, trust and the belief that every child deserves the chance to thrive.
We urge you to meet with disabled children and their families, hear directly about their experiences, and commit to implementing the Law Commission’s recommendations. Please don’t let this opportunity pass.
Yours sincerely,
Anna Bird, CEO, Contact and Chair Disabled Children’s Partnership
Shān Nicholas, Interim Chief Executive, Action for Children
Adam Blaze, CEO, Activity Alliance
Emily Frith, CEO, Adoption UK
Linda Lascelles, Chief Executive, Afasic
Katie Cavanagh, CEO, Action for Kids
J. Paul Wright, CEO, Alliance 4 Children
Sally Polanski, CEO, Amaze
Jolanta Lasota, Chief Executive, Ambitious about Autism
Sue Millman, CEO, Ataxia UK
Tom Purser, CEO, Autism Action
Elizabeth Archer, CEO, Autistica
Liz Brownnutt, CEO, Batten Disease Family Association CIO
Dr Catherine Tuffrey, Chair, British Academy of Childhood Disability
Kirsty McHugh, Chief Executive, Carers Trust
Gen Dearman, CEO, Challengers
Jacqui Shurlock, Chief Executive, The Challenging Behaviour Foundation
Sally Davies, CEO, Cherry Trees Charity
Jeff Bolton, Chair of Trustees, Child Growth Foundation
Anna Gardiner, Interim Director, Council for Disabled Children
Johanna Vigilante, Director of Partnerships & Communications, CPotential
Carol Boys OBE, Chief Executive, Down’s Syndrome Association
Helen Gravestock, Group Director of External Affairs, Family Fund
Lauren Seager-Smith, CEO, The For Baby’s Sake Trust
Pete Richardson, Managing Director, The Fragile X Society
Samantha Barber, CEO, Gene People
Parmi Dheensa, Executive Director, Include Me TOO
Madeleine Cassidy, CEO, IPSEA (Independent Provider of Special Education Advice)
Rebecca Emmanuel, Co-founder, JoshyBoyLegacy CIC
Neil Nute, Director, KEEN London
Katie Ghose, Chief Executive, Kids and Vice-Chair, Disabled Children’s Partnership
Hayley Harding, Founder, Let Us Learn Too
Michael McGrath MBE, Founder & CEO, Muscle Help Foundation
Caroline Stevens, CEO, National Autistic Society
Pam Fry MBE, Chair, National Portage Association
Rachel Perrin and Stephen Morgan, Charity Directors, Newlife
Julie Calveley, Director, Nurturing Affective Care (NAC)
Catherine Bailey, Chief Executive, Parents In Need
Robert Adamek, CEO, Rett UK
Jane Green MBE, Founder/Chair, SEDSConnective
Rachel Filmer, Founder, SEND Rights Alliance
James Watson-O’Neill, Chief Executive, Sense
Kate Steele, CEO, Shine
Clare Kassa, CEO, Sibs
Karen Boath, CEO, SNAP Charity
Gillian Doherty, Director, Special Needs Jungle
Jane Harris, CEO, Speech and Language UK and Vice Chair, Disabled Children’s Partnership
Giles Lomax, CEO, Spinal Muscular Atrophy UK (SMAUK)
Ellie Costello, Executive Director, Square Peg
Melanie Dunn, Chief Executive, Together Trust Charity
Nick Carroll, Chief Executive, Together for Short Lives
Rhidian Hughes, Chief Executive, Voluntary Organisations Disability Group (VODG)
Katy Styles, Founder, We Care Campaign
Amy Mitchell, Director of Programmes, WellChild
Jo Fashan, Associate Director Policy & Engagement, Whizz Kidz
