Prime Minister Andy Burnham has recently announced plans for a National Care service. At the same time, publication of a review of social care being carried out Baroness Casey has been brought forward to next summer. Burnham has pledged to work with the Lib Dem and Conservative parties to put plans into action.
Disabled children’s social care needs reform
Speaking about the announcement, Contact’s CEO Anna Bird says:
“The families we support welcome the government’s focus on adult social care, looking at ways to build a National Care Service. Many of today’s children and young people with special educational needs and disabilities will use the service as they reach adulthood. Families welcome the opportunity to create a better system.
“During these important cross-party discussions, we implore the government to not forget disabled children’s social care. This needs reform with equal urgency. It too is fragmented, outdated, unfair and not fit for purpose. More children are living with complex needs and disabilities than ever before, but support hasn’t kept pace.
“The systemic issues – such as failing to assess needs, cuts to support provided, delays and shortages of suitable staff and local services – leads to increased needs and more expense for adult social care. Parent carers, like carers of older people, are exhausted. They are being pushed into crisis because help in the home, short breaks and direct payments are often not at hand. Some families feel blamed simply asking for support, at times subjected to unnecessary and unwarranted safeguarding investigations.
“Contact’s By Your Side team, works in the country’s biggest children’s hospitals. They see day in and day out the consequences of this broken system. There are thousands of children stuck in hospital waiting for a package of care to allow them to be safely discharged home. Last year they supported 2,220 families whose disabled children need hospital care. Some of those have been in hospital for months or even years.
We urge the government to adopt Law Commission recommendations
“That’s why it’s imperative to consider children as part of this care conversation too. The Government has a real opportunity to create a fairer, simpler social care system for disabled children to enable them to thrive. There is a blueprint on the table in the form of the Law Commission’s recommendations to improve the system. We urge the government to adopt these proposals in full when it responds on 16 September.
In addition, as a short-term measure, we’d like to see the Working Together Guidance include a distinct support-led assessment. This would ensure families asking for help are supported rather than met with suspicion. These actions would ensure that a new National Care Service for adults is not hampered by a system failing children before they reach it.”
The review follows concerns the Transport Select Committee raised in 2025. The committee found that longstanding accessibility failings are having a significant negative impact on disabled people’s lives. These failings are seen across all forms of transport.
The review will examine whether existing laws provide enough protection and support for disabled passengers. The Law Commission will consider whether:
The law should be strengthened and made more consistent.
Complaints and remedies are effective.
Enforcement bodies have sufficient powers to hold transport operators to account.
The review, commissioned by the Department for Transport, began in Spring 2026 and is due to report in Spring 2029. It will place the lived experiences of disabled people at its heart.
Tell us about the transport barriers you face
We want to ensure families with disabled children and young people can contribute to this review in the early stages. This is an opportunity to raise any issues you face, including transport to education.
We’ll use your feedback to identify the issues that matter most to families. We’ll share anonymous evidence and common themes with the Law Commission to shapee its review recommendations. But we will not share your personal details.
Updated on 4 August.
The new Prime Minister Andy Burnham has appointed a new ministerial team. Some familiar faces appear likely to continue in areas that matter to families.
Here’s who we’ll be working with and what we’ll be asking them to prioritise.
Department for Education
The Department for Education (DfE) will continue to lead work on (SEND), school inclusion and children’s social care.
Minister of State Georgia Gould is widely expected to continue leading the government’s work to improve the SEND system. This would provide valuable continuity as the government takes forward the proposals set out in its SEND White Paper.
Josh MacAlister MP has also been reappointed to the department. We expect him to continue leading work on children’s social care.
Continuity has its advantages. Ministers who have already engaged with stakeholders have a head start in understanding the challenges facing disabled children and their families.
However, there is also much more to do.
Contact has consistently called for disabled children’s social care to receive greater attention. While progress has been made in other areas of children’s social care, disabled children have too often been overlooked.
The Department of Health and Social Care has a vital role to play in improving support for disabled children and young people, particularly those with complex health needs.
We’ll be looking to build relationships with the new ministerial team and continue pressing for:
Better access to children’s continuing care.
Shorter waits for therapies and community health services.
Stronger partnership working between health, education and social care.
We also want disabled children’s needs to be fully reflected in future NHS policy not just an add on.
Department for Work and Pensions
Sir Stephen Timms continues as Minister for Social Security and Disability.
We’ll continue working constructively with ministers to ensure disabled children, young people and parent carers receive the financial support they need.
Ministry of Justice
The Ministry of Justice has seen a change in leadership. We are grateful for outgoing Baroness Levitt’s leadership in bringing together ministers, officials, financial institutions, charities and parent carers to explore solutions to the Child Trust Fund issue.
Sarah Sackman KC MP remains a Justice Minister. She has already engaged with Contact and parent campaigner Andrew Turner on our Child Trust Fund campaign. We have already written to Ms Sackman to emphasise the importance of maintaining the campaign’s momentum. We hope the new ministerial team will build on progress so families can finally see the changes they have been campaigning for.
What happens next?
Over the coming weeks, Contact will continue building relationships with ministers across government as portfolios are confirmed. As the new government settles in, we’ll be watching closely for:
Confirmation of junior minister portfolios.
Early engagement with disabled children, young people and family organisations.
The government’s response to the Law Commission’s recommendations on disabled children’s social care.
Progress on Child Trust Fund and Junior ISA access.
How the Government takes forward the proposals in the SEND White Paper.
The Government’s response to the disability benefits and carers’ benefits reviews.
A change of ministers always brings fresh opportunities, but lasting change depends on sustained commitment.
Over the coming months, we’ll continue working constructively with ministers, officials, parliamentarians and partners. We’ll also continue creating opportunities for families to share their experiences directly with government, the media and in Parliament. It’s vital that disabled children, young people and parent carers are at the heart of decisions that affect their lives.
Featured image photo credit: www.number10.gov.uk
Disabled children from low-income families are missing out on free government holiday activities, the Children’s Commissioner in England is warning.
A report published this week finds that children with special educational needs and disabilities (SEND) are a third less likely to access the government’s Holiday Activities and Food (HAF) programme than other children from disadvantaged backgrounds. Disabled children are missing out due to activities being too far away, inaccessible or lacking the support these children need.
The Commissioner calls on the government to provide a fully-inclusive HAF programme, accessible transport and extra support for disabled children.
The HAF programme provides free holiday clubs, healthy meals and activities for children receiving free school meals. Local authorities administer the programme in their area.
“Too often we hear from families with disabled children who are dreading the summer holidays. They know it means increased isolation and lack of social contact as their children are left out of activities with their peers. We support the Children’s Commissioners calls for funding to ensure the HAF programme is fully-inclusive. And we would like to see a percentage of activities prioritised for disabled children, and training for providers on SEND and reasonable adjustments.”
People with learning disabilities are far more likely to die prematurely from preventable illnesses such as respiratory and heart disease, according to the latest LeDeR findings.
On average, people with a learning disability die at 62.8 years, compared with 81.8 years in the general population. That’s a 19‑year gap. People with Down syndrome had an average lifespan of 59.8 years and high rates of dementia.
The King’s College Learning from Lives and Deaths study reported that around half of all deaths in people with learning disabilities were from treatable conditions, including respiratory infections, epilepsy and heart disease.
Suicide, misadventure and accidents were the most common causes of premature death for autistic people without a learning disability. However, this data is less reliable due to under‑reporting. Avoidable deaths fell slightly in the last three years from 46% to 39%. But the rates are almost twice those seen in the general population.
A reminder that timely, accessible healthcare is vital
Contact’s health lead Amanda Elliot said the annual LeDeR report was always a deeply distressing read, but also a reminder that timely, accessible healthcare is vital to ensure people with learning disabilities and autistic people live long and healthy lives:
“Families shouldn’t have to fight for basic healthcare. Yet too many disabled children grow up in a system that fails to spot problems early enough, fails to listen to parents, and rarely makes the reasonable adjustments they’re legally entitled to. The life‑expectancy gap is unacceptable, and it starts with the care children receive today.”
Stronger accountability in health, so every child gets the support and interventions they need to live a long, healthy life.
The Government plans to replace LeDeR with a new national dataset covering autism, ADHD, learning disability and Down syndrome.
Contact will monitor this to ensure children’s needs are properly captured and accountability for tackling health inequalities is not lost.
Andy Burnham MP takes office today, becoming the next Prime Minster. Families across the UK will be hoping that improving support for disabled children and young people becomes an early priority.
Drawing on the experiences of the hundreds of thousands of families Contact supports each year, we know parents want practical changes that make everyday life easier, reduce unnecessary stress and end the constant battles many face to get the support they need. There are many challenges ahead, but there are also opportunities to make meaningful progress from day one.
“The first 100 days of a new government set the tone for what follows. Families with disabled children aren’t asking for special treatment. They’re asking for practical changes that remove unnecessary barriers and give their children the opportunity to thrive. These three actions would make a real difference to thousands of families across the country.”
Contact CEO Anna Bird
Here are three opportunities we believe should be at the heart of Mr Burnham’s first 100 days.
Unlock Child Trust Funds and Junior ISAs for disabled young people
Around 80,000 disabled young people who lack the mental capacity to manage their own finances are unable to access savings held in Child Trust Funds and Junior ISAs because of an outdated, costly and lengthy court process.
There is now real momentum behind finding a solution. Baroness Levitt recently brought together ministers, financial services providers, charities and parent carers to explore practical UK-wide options. We welcome that commitment. We urge the government to build on this work so disabled young people can finally access money that belongs to them.
The solution we are championing could unlock more than £210 million belonging to disabled young people. And by building on existing industry processes, it avoids creating significant additional costs for government.
Create a fairer, simpler social care system for disabled children
Too many parent carers tell us that asking for help feels like a battle. Families often have to fight for basic support, repeat their stories time and again, and reach crisis point before help is available. Some families even tell us they feel blamed simply for asking for the support their child is entitled to.
The Law Commission has already set out clear recommendations to modernise disabled children’s social care law in England. Implementing these recommendations would create a simpler, fairer and kinder system, giving families greater confidence that support will be available when they need it, preventing crises and reducing the stigma that too often surrounds asking for help.
Build trust in SEND reforms by listening to families
The SEND White Paper in England presents an opportunity to improve support, but many families remain worried about the proposals. Contact has been working with parent carers to understand what needs to change. Families consistently tell us they want confidence that the support promised to their child will actually be delivered.
As the proposals are developed, we urge Ministers and officials to listen carefully to families. They must ensure that support set out in Individual Support Plans is legally enforceable. There should be clear rights of appeal when support is not provided.
Children and families need a SEND system that builds trust, strengthens accountability and improves outcomes.
Looking ahead
These three opportunities are practical, achievable and would make a real difference to disabled children and their families. They should also mark the beginning of a longer-term commitment to building a more secure future.
By listening to families, Mr Burnham and his ministerial team have an opportunity to create a fairer, kinder and more inclusive system that gives every disabled child and young person the chance to thrive.
Contact stands ready to work constructively with the new government, helping ensure parent carers have meaningful opportunities to share their experiences and shape the policies and laws that affect their families.
It’s just 2 months to go until the government must respond to recommendations to improve outdated social care law for disabled children.
Families caring for disabled children are routinely left without essential support in the home, short breaks and direct payments. Instead, they are pushed into crisis and subjected to unnecessary and unwarranted safeguarding investigations.
Huge thanks to the 650 of you who have already taken action.
Why act now?
This is a rare opportunity to make meaningful change in a decades-long overlooked area. We need MPs to support the Law Commission proposals to create a fairer, more modern and workable social care system of support for disabled children.
Una Summerson, Contact’s Head of Policy and Campaigns, said: “We hear daily from families with disabled children failed by the current social care system.
“However, there is little awareness amongst MPs and policy makers about the importance of good social care support. We now have two months to create greater understanding of the importance of social care support.
“Without law change, disabled children will continue to face a postcode lottery of support. This leads to more pressure on schools and teachers who are left to pick up the pieces when a child and family aren’t supported outside the classroom. It also creates more pressure on the NHS as physical and mental health conditions worsen without support and respite and more pressure on the benefits system as families without adequate support struggle to maintain work and caring responsibilities.”
Take action
Write to your MP today to improve disabled children’s social care law and create a better system of support.
If you would be willing to share your story in the media, get in touch [email protected] or telephone 07599 930 090.
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