It was reported in the media last week that the government is considering removing the Universal Credit (UC) health element for disabled young people under the age of 25. Reports also suggested existing claimants could be affected.
These options have not been announced as government policy, but we know the reports will be worrying for families.
The health element is an additional amount of UC for people whose disability or health condition significantly limits their ability to work and take part in work-related activities.
The government previously proposed delaying access to this payment until age 22 in its Pathways to Work green paper. It has since said it will consider the findings of Alan Milburn’s wider review into young people and work before deciding whether to introduce this restriction.
Removing this support would put further pressure on families already facing significant financial challenges. For some families, it could mean an overall drop of more than £600 a month when their young person moves from child-related benefits to claiming UC as an adult. The amount would depend on the family’s circumstances.
Una Summerson, Contact’s Head of Policy and Campaigns, said: “We share the government’s ambition for disabled young people to work and thrive. But removing financial security risks reducing opportunities rather than creating them. This support can help young people afford the equipment and transport they need to take part in work or study. For some young people, their disabilities or care needs mean paid employment is not possible. They need support to lead fulfilling lives too.
Understanding young people’s circumstances
The government is looking at ways to reduce the number of young people classed as NEET (Not in Education, Employment or Training). But young people receiving the UC health element are not all in the same position. Some are still in education or training, or are working with UC topping up their earnings.
Una Summerson added: “Ministers have repeatedly said that those with the most severe disabilities will be protected. But we still don’t know what this means, what criteria would apply, or how difficult it would be to prove eligibility.
“Before making such a fundamental change, we are calling on the government to publish the evidence. How many young people receiving the health element are NEET? How many are studying, working or volunteering? And among those who are NEET, how many cannot participate because of their disability or health condition?”
Help us campaign
Now is an important time to make our voices heard, before decisions are made. Email your MP today to ask them to protect financial support for disabled young people. We have prepared an email you can personalise, making it quick and easy to take action.
Sharing your family’s experience in the media can also show why this support matters. We are expecting the Milburn review, to be published next week. This is looking at ways to reduce the number of young people who are NEET including reducing financial support. Journalists are looking to speak to families and young people who could be affected. If you are be interested in speaking out, get in touch with our press team. We can explain what would be involved and support you if you decide to speak out.
Prime Minister Andy Burnham has promised to “grasp the nettle” and tackle England’s broken social care system. Parent carer Emma Chapman welcomes the PM’s ambition. But after years fighting for support for her disabled son Alf, she asks why children like Alf are missing from the big conversation.
Someone finally wants to grasp the nettle
Just after Andy Burnham stepped into the role of prime minister, I listened to him on a podcast called ‘How to Fail’. I listened to him talk about the broken social care system in this country and felt somewhat hopeful that the heartache I was suffering may soon come to an end. Families like mine would finally get the help they so desperately need. As the parent of a child with a physical disability and epilepsy, I know only too well that our social care system is broken, and it needs brave politicians willing to fix it. The Prime Minister addressed the issue again last weekend, talking of “ripping the plaster off” and creating a national system where everybody contributes and everybody is covered. These are big and welcome ambitions. But I was also struck by something that parent carers like me have become very used to.
Where are the children?
Disabled children need social care too
When politicians talk about fixing social care, they almost always seem to mean adult social care. But thousands of children and families are being pushed through a system that breaks them before providing any help.
Alf has cerebral palsy, epilepsy, and high care needs. Our everyday life is 24/7 care. He needs support with all everyday tasks, including with playing, which can’t be taken for granted. His night-time seizures mean we’re constantly on alert, often getting up several times a night to care for him and keep him safe. As Alf gets bigger, the physical demands on us get bigger too. We’ve been fighting for increased support since September 2024. Although our hours were eventually increased, we still can’t recruit anyone to provide them, and our requests for overnight support continue to be refused.
We love Alf and caring for him is a privilege. The problem is being expected to do this without the support our family needs.
We recently spoke to Channel 4 News about our experience of trying to get social care support. I described it as a process of being “gas-lighted”. You ask for help because you know your family cannot keep going as it is, and instead of receiving that help, you can find yourself having to prove and re-prove just how difficult life has become.
Constant battle
Something I said to Channel 4 that didn’t make the interview was that I feel both my children have been robbed of happy mummy moments. I’ve spent far too much of their childhood crying and having panic attacks, because accessing the support Alf needs has become a constant battle. At times, social care has felt more like financial gatekeeping than a service designed to support our family.
We are far from the only family experiencing this. I’ve spoken to so many families who’ve felt their social worker was more interested in their home décor than the needs of their disabled child.
Research by the University of Birmingham found that 41% of parent carers surveyed had experienced suicidal thoughts, a devastating statistic that highlights just how urgently families need better support.
In my experience, families rarely approach social services because they want to. They do so because they’re approaching breaking point, often following advice from a professional. Inviting a social worker into your home and asking for help is incredibly intrusive. To then be told your child doesn’t meet the threshold for support, or to be awarded a handful of hours for which you can’t recruit a carer, is devastating. If a family cannot recruit carers to deliver the support they’ve already been awarded, what does that support actually achieve?
Why should Alf have to wait until he is 18?
This is the bit I find so hard to understand. Disabled children become disabled adults. Alf has seven more birthdays before he is 18. Why should families like ours have to struggle through those childhood years before disabled children’s social care system becomes a national political priority? The lack of support in childhood doesn’t disappear at 18. It feeds directly into the pressures on adult social care. You cannot truly fix the system if you leave it broken for the first 18 years of a disabled person’s life.
Good social care in childhood isn’t just about helping parents cope. The right support – short breaks, personal care, help at home, overnight care and home adaptations – enables disabled children to be safe, thrive and take part in family and community life. It gives parents a chance to be mum and dad rather than exhausted, sleep deprived carers. It also stops families being pushed towards crisis.
Reason to be hopeful
In November 2024, I took part in a Law Commission discussion group with other parent carers, sharing our experiences of trying to access social care for our disabled children. Until then, I genuinely thought it might just be our local authority in Derbyshire where families were experiencing these problems. I was both shocked and strangely comforted to discover that families across the country were fighting similar battles. We weren’t alone, and finally, someone was listening.
For parent carers, that matters enormously. Currently our rights and children’s entitlements sit across complicated, decades-old legislation. Families shouldn’t need to become experts in social care law simply to understand what help their child may be entitled to. We have an opportunity to make the system clearer, fairer and kinder.
Please grasp the whole nettle
My message to Andy Burnham is simple: Please do grasp the nettle. Be the Prime Minister who finally fixes social care. But please don’t forget the children.
Implement the Law Commission’s blueprint for modernising disabled children’s social care law. And if we are going to have a national conversation about what a decent social care system should look like, disabled children and their families must be part of that from the outset.
Alf shouldn’t have to wait until adulthood for his social care needs to matter.
Neither should any other disabled child.
Every Child Matters.
Add your voice
If you’re a parent carer, grandparent, family member or simply believe disabled children deserve better, you can help.
We are calling for EOTAS to remain a needs-led option for children and young people who cannot receive their education in a school or college, with families’ existing legal protections retained.
EOTAS can be a lifeline for children and young people with special educational needs and disabilities (SEND) whose needs cannot safely or effectively be met in a school, college or alternative provision setting.
One parent told us: “He is now settled, calm and emotionally secure. His anxiety has reduced significantly, he is no longer experiencing the daily distress that school caused, and he has been able to engage positively in learning because it is delivered at a pace and in a way that meets his individual needs.”
Contact supports the government’s aim of improving the consistency, quality and accountability of EOTAS.
What is Contact calling for?
EOTAS to remain a distinct, needs-led route. Children should continue to receive bespoke packages based on their individual educational, therapeutic and other needs.
Existing legal protections to be retained. Section 61 of the Children and Families Act should remain, with EOTAS provision specified, quantified and legally enforceable.
Local authorities to remain responsible. They should continue to be responsible for commissioning, funding and overseeing EOTAS rather than responsibility transferring to individual schools or colleges.
Families to retain their SEND Tribunal rights. Parents and young people need an accessible and enforceable way to challenge decisions to refuse, change or end EOTAS provision.
Personal budgets and direct payments to remain available.
Clearer coordination and accountability, including a named coordinator or key worker to help families navigate EOTAS arrangements.
Returning to school
The consultation asked a number of questions about children receiving EOTAS returning to school.
Contact believes returning to school should not be the automatic goal of EOTAS.
For some children, returning to school may be right. Where it is, Contact believes this should be carefully planned with the child and family, properly supported and happen at the child’s pace. There should be flexibility to pause or step back and continued access to elements of an EOTAS package during the transition where needed.
Contact believes families should retain an accessible and legally enforceable route to challenge decisions to refuse, change or end EOTAS. We do not want families to rely instead on routes such as complaints or judicial review, which can be more complex and less accessible.
What happens next?
The EOTAS consultation has now closed and the government will consider the responses it has received.
Contact will continue to engage with the Department for Education, ministers and parliamentarians as the proposals develop, making sure that the experiences of disabled children, young people and their families are heard.
For now, your child’s existing legal rights have not changed. If you are told that your child’s EOTAS or EHC plan rights have changed because of the government’s proposals or the Schools White Paper, that is not correct.
You can find more information about your current rights and the proposed changes on our website:
A new report from the Children’s Commissioner for England has found that tens of thousands of 16 and 17-year-olds in further education (FE) may be persistently absent, but they are not showing up in official figures.
The Hidden Neets report found that data collection for FE is different to that in schools and many absences may not be officially recorded.
Disabled young people with an Education, Health and Care Plan (EHCP) have higher rates of severe absence than their peers. Colleges identified a range of barriers to attendance, including mental health difficulties, poverty, caring responsibilities and transport problems.
The Children’s Commissioner has called for better monitoring of attendance by FE colleges so that young people who are struggling can be identified and supported before they become disengaged. She also recommends faster mental health care, better support for moving into work and free bus travel.
Suitable transport is essential to ensure young people can take up and remain in education. For disabled students the recommendation needs to go further than free bus travel. We’re campaigning so the right to council transport for young people with additional needs, does not stop at 16.
We have some encouraging updates on our work to make accessing Child Trust Funds (CTFs) and Junior ISAs (JISAs) simpler for families with disabled children.
Parliament debates a legal solution
The House of Lords has backed an amendment to the Financial Services Act, put forward by Baroness Kramer.
What does this mean for families?
At present, if a young person turns 18 and lacks the mental capacity to manage their money, parents are often forced to apply through the Court of Protection to obtain Deputyship to access their child’s savings (such as Child Trust Funds). This process can be costly, lengthy, and stressful.
This new amendment creates a clear legal framework allowing finance companies to release these funds directly to families. If passed by the House of Commons, it will turn temporary workaround schemes into a single, permanent rule that applies to all financial institutions and offering families a consistent, straightforward process.
While MPs in the Commons could still reject the change, the strong support in the Lords puts welcome pressure on the government to act. We want to extend our sincere thanks to Baroness Kramer, as well as Lord Blunkett, Lord Young, Sir Ed Davey, John Milne MP and everyone else who voted for this amendment for speaking up for our families.
FCA launches review into unclaimed funds
The Financial Conduct Authority (FCA) has announced a new review into unclaimed Child Trust Funds. The FCA has confirmed its review will specifically include investigating the exact hurdles parents face when trying to access funds for a disabled young person.
Nationwide introduces dedicated support for families
In a positive move for families, Nationwide has launched new website guidance and a dedicated support team to help parents navigate CTF and JISA access. One of the biggest frustrations that parent carers share with us is how hard it can be to reach someone at a bank who understands what to do if their child lacks mental capacity. Nationwide is one of the first major providers to openly publicise their process and offer direct support lines.
We will keep you updated as the Financial Services Act moves through the House of Commons with how you can get involved. In the meantime, you can read more about how to navigate CTFs and JISA, find out which providers are already helping families, or join our campaign community.
Contact and more than 50 charities in the Disabled Children’s Partnership, have written to the Prime Minister outlining the catastrophic failures in the disabled children’s social care system and asking him to fix it.
The Prime Minister Andy Burnham has seen first-hand the impact of the broken adult social care system and in his first week in office pledged to reform it. But he has not addressed the shortcomings in disabled children’s social care.
A ready-made solution
There is a blueprint for how to fix social care for disabled children – the Law Commission has done extensive work on their proposals to create a simpler, fairer system. Contact and 50 other charities are urging the government to adopt the proposals in full.
Anna Bird, Chief Executive of Contact and Chair of DCP, said: “There are hundreds of thousands of disabled children who need help in the home. But their families must reach crisis point before help from social care is even considered. Others are too afraid to ask at all, worried they will be judged and separated from their child, rather than supported.
Devastating consequences
“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.
“There is a ready-made solution for how to fix this. We urge the Prime Minister to take this once in a lifetime opportunity to create a simpler, fairer social care system for disabled children as well as adults.”
Take action
Contact wants to keep up the momentum to get disabled children’s social care on the political agenda. Thank you to the hundreds who have already written to their MP. We need a final push to raise awareness of this issue.
Write to your MP today and ask them to write to the minister urging him to back disabled children’s social care law and create a fairer system for disabled children and their families.
We’ve created a template letter, so it only takes a few minutes.
Our CEO, Anna Bird, has written in the Guardian about the urgent need for families raising disabled children to receive support early – before exhaustion becomes a crisis.
In her letter, Anna highlights what parent carers tell us every day. Families need timely access to support in the home, short breaks and services that recognise and respond to the needs of parent carers as well as those of their disabled children. Some families are blamed simply for asking for the support their child is entitled to and subjected to unnecessary and unwarranted safeguarding investigations.
We know that, for too many families, support comes too late. Our helpline continues to hear from parent carers experiencing problems with social care, including difficulties getting their needs assessed, reductions in support, delays and shortages of suitable staff and local services. Anna’s letter follows a Guardian investigation into the experience of one family and the devastating consequences of a system that failed to provide the support they needed.
We have also written letters highlighting how the current social care system is failing families to the Children and Families Minister Josh MacAlister and Louise Casy who has been tasked with reviewing the adult social care system as part of the new Prime Minster Andy Burnham’s priorities.
PLEASE NOTE: The Guardian investigation discusses suicide and bereavement. We recognise that this may be distressing for some parent carers. You do not need to read the investigation to understand the issues raised in Anna’s letter.
Ask your MP to act on disabled children’s social care
Disabled children’s social care provides vital practical support, including short breaks (respite), personal care and help at home. The Law Commission has set out a blueprint to fix the outdated system and make it fairer, simpler and kinder for families. The Government is due to respond by 16 September.
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.
The 10 Minute Rule Bill is focused on ensuring fair access to savings for young disabled people who lack mental capacity in Child Trust Funds and Junior ISAs.
The Bill has been secured by John Milne, the local MP of Andrew Turner, the parent carer who has spearheaded the Child Trust Fund campaign over the last five years.
Justice Minister meets parent carers whose children are locked out of savings
Families with disabled young people affected by the Child Trust Fund issue brought their voices directly to the heart of government last week, in a crucial meeting with Baroness Levitt, the Justice Minister charged with tackling the issue.
Organised by Contact, in partnership with the Ministry of Justice (MoJ), the meeting gave a group of parent carers the opportunity to share the significant hurdles that they face when trying to access savings legally belonging to their disabled children.
Under current rules, when a young person lacks the mental capacity to manage their own finances at 18, families are forced to navigate the complex, lengthy, and often costly Court of Protection process just to access their Child Trust Fund.
A powerful step forward for parent voice
This meeting marks a major milestone in our ongoing mission to amplify parent voice and ensure decision-makers understand the barriers that families often face. Parent carers spoke passionately about the emotional and financial strain caused by the current system and we are grateful to them for taking the time to do so.
Baroness Levitt showed a genuine, heartfelt commitment to finding a lasting resolution for disabled families. Having a minister engage so constructively with our community is a positive step forward.
From commitment to action
While the Minister’s commitment has given families renewed hope, the message from parent carers remains clear: we now need urgent action.
“Thousands of disabled young adults in England and Wales still have their savings locked away – money designed to help a young person when they turned 18 and often added to by family” says Campaigns Engagement Lead at Contact, Maria Scholey.
“Whilst many leading financial providers such as One Family, Foresters, Nationwide, Santander and the Co-Operative Bank are using an industry process that mirrors the appointee scheme to release funds safely, others are not. This is why a government backed approach is essential to ensure that all young people can access their savings”.
Next steps
Contact is attending a roundtable organised by Baroness Levitt on the 8 July, attended by parent carers, officials and financial providers. The aim is to turn these positive conversations into the concrete solution that families deserve.
At a Westminster Hall debate on 4 June, MPs highlighted growing concerns about home-to-school transport for young people with special educational needs and disabilities (SEND), as well as the challenges facing families in rural areas.
Contact’s evidence highlighted in Parliament
In his opening remarks, Tom Gordon MP referenced evidence submitted by Contact to the Public Accounts Committee (PAC), saying:
“The charity Contact put it clearly in evidence to PAC (Public Affairs Committee): the policy is simply not working post 16. The change in entitlement can feel like a cliff edge. For families who have spent years building routines and supporting a young person with complex needs, that cliff edge can be devastating for the young person and for every member of their family around them.”
Transport barriers limit access to education
During the debate MPs shared examples of young people with SEND struggling to get to college because suitable transport was unavailable. MPs described the impact on families who are often forced to face difficult choices about employment, finances and their child’s education.
Concerns were raised about inconsistent local authority policies, lengthy appeal processes and personal transport budgets fail to reflect the true cost of travel. One MP referred to a local transport policy that made it “all but impossible” for SEND students to secure the transport support they need. There was broad agreement across the debate that transport is often the deciding factor in whether a young person with SEND can attend college, take up training opportunities and develop greater independence.
Additional challenges for rural families
MPs also highlighted the particular challenges families in rural areas face, where children and young people often have to travel long distances to reach a suitable school or college. Concerns were raised about the current transport eligibility rules based on attendance at the “nearest suitable” setting. MPs argued that this can leave families struggling when local provision cannot meet a child’s needs or when the nearest placement is many miles away from home.
Calls to review post 16 transport
MPs called on the Government to review post-16 transport arrangements and funding, and to strengthen national guidance for local authorities to ensure that young people with SEND can access education and training opportunities more consistently.
Thanks to funding from the Motability Foundation, Contact is campaigning to improve transport to school or college. Read more about our school transport campaign.
What you shared with us through our focus groups in March, our helpline and family support services, as well as our research and campaigning work, has been central to shaping our submission.
Contact recognises the urgent need to reform SEND support. We welcome the government’s ambition to improve inclusion, strengthen earlier intervention and improve support in mainstream schools. We also recognise the constructive engagement ministers and officials have had with parent carers and the sector during the consultation.
However, our response makes clear that reforms will only work if they strengthen rather than weaken support, accountability and families’ confidence in the system.
As a priority, the government must make sure support set out in Individual Support Plans (ISPs) is legally enforceable and clearly accountable. It must also be backed by independent ways for families to challenge decision when support is not delivered.
Based on what parent carers shared with us, Contact believes successful reform must be built around five key principles:
Support must remain based on children and young people’s needs, not what services can afford.
Families must retain strong legal rights and meaningful routes of challenge.
Assessment and support must remain joined-up across education, health and care.
Mainstream inclusion must be strengthened alongside continued investment in specialist provision.
Co-production and fair access to support must be embedded throughout the system.
What you told us
Across our discussions with parent carers, families consistently said they want earlier support before needs escalate into crisis. They also told us they want to see:
More inclusive schools and settings.
Better joined-up working across education, health and care.
Fewer delays and less conflict.
A system that is easier to navigate and more accountable when support is not delivered.
Many parent carers welcomed proposals for new Individual Support Plans (ISPs) and stronger inclusion in mainstream schools. However, they also raised significant concerns about accountability and enforceability. Parent carers worry that without clear legal duties and independent routes to challenge decisions, ISPs could repeat some of the same problems families already experience under SEN support. This includes inconsistent support and difficulties securing provision when it is not delivered.
Families made clear that SEND tribunals are usually a last resort, used only when the wider system has already failed their child. Parent carers told us they do not want lengthy disputes or conflict with schools and local authorities. But they do want reassurance that there are proper safeguards in place when support breaks down.
A particularly strong message from parent carers was that poor coordination between education, health and care services remains one of the biggest weaknesses in the current system. Fragmented systems, staff shortages and unclear accountability were repeatedly described as major barriers to accessing therapies, Child and Adolescent Mental Health Services (CAMHS) support, continuing care and specialist support.
Contact is concerned that health and social care are still not sufficiently embedded in the White Paper proposals. Without stronger joint accountability, sufficient workforce capacity and clearer responsibilities across agencies, there is a real risk the reforms will not deliver the meaningful change children and families urgently need.
What happens next?
The Department for Education will now review the responses submitted to the consultation. It will publish its formal response later this year.
The response will set out the feedback received and which proposals the government intends to change, take forward or develop further. Further policy development and engagement will continue over this period.
Last week the King’s Speech announced an Education for All Bill, which will include any legislative changes needed. The parliamentary process will be another opportunity for parent carers and charities to influence what the Bill says before it becomes law.
Last year Contact launched its Children’s Continuing Care campaign to improve this vital NHS funded support in the home for children with life threatening conditions.
It followed publication of data we gathered through Freedom of Information requests (FOIs) to all 42 Integrated Care Boards in England about the number of medically complex children receiving continuing care support. This revealed that over half who have been referred for Continuing Care have been rejected and those that do get it worry it will be reduced or removed.
Children have less legal protections
Amanda Elliot, Health policy lead at Contact, said: “The number of children living with life threatening conditions has risen dramatically but support for them when they get home from hospital is patchy. Those who do get it live in fear it will be taken away and those who don’t are doing the most complex nursing procedures at home alone. Children have less legal protections than adults, which is why Contact is calling for a strengthening of children’s Continuing Care to bring it in line with the adult system. Our work over the last nine months is establishing a strong evidence base and growing recognition among decision-makers that change is needed.”
Begun development of practical resources to support families challenge poor and often unlawful practice.
Providing support to families formally challenging failures in the Continuing Care system.
Co-presented our FOI findings with local authority children’s social care leads pressing for improvements in children’s continuing care.
Support the campaign
Our campaign needs your support. We are still calling on parents and carers to add their voice to the campaign by signing our petition.
One family said: “Thank you Contact for launching this campaign it means a great deal to families like ours. Not having appropriate support from NHS Continuing Care for medically fragile children with 24-hour, lifelong needs has a serious impact on the entire family and directly affects the child’s standard of care. Parents are often left struggling to cope without adequate professional support, and instead of receiving help, many are blamed for being unable to manage – even when the underlying issue is a lack of funding or trained carers. Families in our group and across the country live in constant fear that vital support packages will be reduced or withdrawn.”
More than 1,000 children remained in hospital for over a year, with many unable to leave because of delays arranging care packages, a shortage of social care placements, and unsuitable or unsafe housing.
Commissioner Dame Rachel de Souza described these delayed discharges as a “total systemic failure” and a breach of children’s rights. With more children living longer with complex medical needs, the number affected is rising.
The report twice quotes Contact’s own investigation which exposed how children with life‑threatening and life‑limiting conditions are being failed by continuing care – NHS‑funded support designed to enable those with the most complex health needs to come out of hospital and live safely at home.
Our By Your Side family support workers, based at Great Ormond Street, Evelina London, Birmingham Children’s Hospital and the Great North Children’s Hospital in Newcastle, see the impact of these delays daily.
Ruth Stone, By Your Side Manager, said: “We often speak to families whose children are stuck in hospital for months at a time. It takes a huge physical and emotional toll.
“When you’re in hospital with a child with medically complex needs, you’re still doing much of the care yourself. You’re up for observations throughout the night and often only have an upright chair to sleep in.
“There’s also enormous isolation and loneliness at such a difficult time. Friends and support networks aren’t nearby, and siblings are usually at home being cared for by another parent or relative.
“And the financial impact is huge. Parents can’t work, and the cost of being in hospital quickly adds up.”
Our By Your Side team report:
Some children are in hospital for months or even years. Some have never been home.
Many are waiting for 24/7 care packages, including children who need long‑term mechanical ventilation.
Others are waiting for specialist equipment or essential home adaptations.
Some children are unable to return home because their housing is unsafe due to mould, damp, poor accessibility or severe overcrowding.
Children suitable for home dialysis may not have their own bedroom or space for equipment.
Children on Total Parenteral Nutrition (TPN) often need a separate fridge, a separate bedroom and a safe space to prepare feeds.
Specialist children’s hospitals cannot always discharge to a child’s local hospital because of bed shortages or lack of resources, leaving children far from home for long periods.
Support our campaign for a better deal for medically complex children by signing our petition.
This information is for families living in Scotland or Wales
With the Scottish Parliament and Senedd elections on 7 May approaching, Contact Scotland and Contact Cymru are calling on families, supporters and allies to take action.
Families with disabled children across Scotland and Wales are facing a constant battle to get the support they need. From delays in assessment, diagnosis and therapy, to challenges accessing the right support in education and schools, to the financial pressures of caring. This election is a key moment and a crucial opportunity to drive change.
Contact your local candidates and ask them: Will you commit to ending the battle for families with disabled children?
Despite progress, too many families still experience inconsistent support depending on where they live. Systems can be fragmented, under pressure and difficult to navigate, and families often feel unheard or left to fight for what they are entitled to.
But change is possible. This is not inevitable and it can be fixed.
We’re calling on all candidates to commit to three clear pledges:
End the fight for basic support
Tackle the financial penalty of caring and disability
Put families at the heart of decision-making
These are practical steps within the powers of the Scottish Parliament, Senedd and Welsh Government that would make a real difference.
Why this matters
Families with disabled children face significant additional costs, while many parent carers are forced to reduce or give up work. At the same time, delays in support mean needs escalate, increasing pressure on families and public services alike.
Without the right support, families are pushed to crisis point with long-term consequences for wellbeing and public services.
Investing in early, effective support is both the right thing to do and a cost-effective solution for families and the economy.
Help families navigate complex systems and access the support they are entitled to
Support families to maximise their income
Bring families together to reduce isolation and build confidence
We also provide vital early support and play a preventative role, reaching families early and helping avoid crisis.
Take action today!
Now is the time to act. We need your voice. Contact your local candidates and ask them: Will you commit to ending the battle for families with disabled children? We’ve made it easy for you to do:
The letter calls on the government to Close the Loophole leaving disabled young people without the transport they need. Nearly 6,500 families and supporters signed the letter.
Currently, young disabled people aged 16-plus in England are expected to stay in education until they’re 18. Yet government guidance in England leaves post-16 school transport at the discretion of local authorities.
A huge thank you to everyone who signed our letter
Rachel said:
“We want to say a huge thank you to the families behind this letter, many of whom are fighting their own transport battles, and to the thousands of families and supporters that signed it. This shows the enormous support there is for this.
“Transport isn’t a luxury. It’s vital: it keeps young people in education, families in employment and families with disabled children going. It gives them a chance at an ordinary life. It makes no sense that young people stay in education or training until at least 18, but their transport stops at 16. The law isn’t there to support them.
“Our campaign and the change we want will mean a fairer system where transport decisions are based on need, not age. This is not about wanting anything special. It’s about disabled young people getting an education they have a right to and deserve and the support they need to get them there.”
Next steps
Contact will ask the Secretary of State to meet with us and parents impacted by this loophole in the law. We’ll continue to campaign for a system where all disabled young people get the support they need to continue in education.
The Law Commission’s final report was published in September 2025. It called for a clearer, more consistent legal framework around social care for disabled children and their families, citing widespread confusion, inconsistent eligibility criteria, and barriers to accessing support.
The Department for Education (DfE) commissioned the review in 2023 after concerns from families, practitioners, and local authorities, as well as campaigning by the Disabled Children’s Partnership.
Amanda Elliot, health lead at Contact, said the response was “disappointing” because reform was urgent. She added: “More children are living with complex disabilities, yet families are finding it harder to access social care support. Too often help only arrives once families reach breaking point when children’s needs have escalated.
“The application process can be frightening for parents as it is so focused on safeguarding. Many feel treated with suspicion and blame rather than care and compassion.
“If disabled children’s needs aren’t supported at home, the impact is felt beyond the family – affecting schools, the NHS and parents’ ability to stay in paid work. Investment in Family Help is welcome. But it is unlikely to solve the problems families face.
“Experts have already set out a clear blueprint for a simpler and fairer social care system for disabled children. The government should accept these reforms and begin implementing them without delay. Without fixing disabled children’s social care, wider SEND reforms will struggle to succeed.”
Help us keep up the pressure
Contact has campaigned for the Law Commission reform proposals to be accepted in full and without delay. We will be conveying this to DfE officials when we attend a social care roundtable with parents this week
Help us to keep up the pressure by using this template to email your MP urging them press the government to accept the reforms in full.
The government will publish its final response to the Law Commission on 16 September.
Which reforms did the Law Commission recommend?
The Law Commission report made 40 recommendations for legislative reform including:
National eligibility criteria to end the post code lottery of care for disabled children.
A new single statutory duty to assess the social care needs of disabled children,
A single duty to meet the eligible social care needs of disabled children, based on national eligibility criteria.
A requirement for direct payments to be sufficient to cover the actual cost of meeting a disabled child’s assessed care needs.
New statutory guidance for local authorities and families
A stipulation that people assessing disabled child are required to have ‘the skills, knowledge and competence” to do so.
A single duty that would enable parent carers to request an assessment for themselves.
What the government’s letter to the Law Commission said
Children and Families Minister Josh MacAlister thanked the commission for its work and promised the Department for Education would “engage closely with children, young people, families, local authorities, professionals and representative groups” before making any decisions.
MacAlister confirmed that the government would not decide whether to accept, reject or modify the recommendations until its full response is published later this year. He added that Law Commission’s proposals would be considered alongside the Government’s wider SEND reforms currently out for consultation.
His letter said the rollout out of Family Help under was already delivering “many of the intended outcomes” of the Law Commission’s report and added that the Government remained “firmly committed to creating a simpler, more consistent and more effective framework for disabled children’s social care”.
This advice applies in England only.
Today on Radio 4’s SEND in the Spotlight, mum Becci Tobin, a Contact Changemaker, has spoken about the importance of the health part of her son Keir’s education health and care (EHC) plan, to ensure he can go to school safely and enjoy all the activities and opportunities there.
Keir has a rare, life limiting genetic condition. He is blind and has multiple seizures a day, as well as highly complex medical needs. His health care needs are fully met at school, and they provide a range of sensory activities. He enjoys hearing the sound of other pupils and staff. Despite Keir’s profound disabilities, the school recently took him to a farm where he enjoyed the animal sounds.
Health support in schools
Amanda Elliot, Health lead at Contact, said:
“Health support in schools is vitally important to ensure children with health conditions can safely enjoy, learn and take part in school like other children. There are great examples of schools delivering health support, but we also hear from parents who must battle to get that care for their child. We would have liked a greater focus on health in the schools white paper. It’s a key part of the puzzle to ensure all children feel welcome and safe at school.”
Debate over the schools white paper is focused largely on mainstream. But special schools need funding and resources too. Many do an incredible job. But a lot of staff are dealing with toileting or moving children, rather than giving them learning experiences.
Contact has called for:
Access to a wider range of health specialists – educational psychologists, occupational, speech and physiotherapists and specialists for children with visual and hearing impairments – in mainstream and special schools.
More school nurses in special and mainstream schools. We’d like to see community nurses in special schools who can train and directly oversee and support staff to carry out healthcare and medical procedures (under formal delegation).
Extended powers for the SEND tribunal to be able to force health to act over provision. At present they can only recommend health provision.
Specialist health provision for children without EHC plans who have SEN or School based support including ready access to speech and occupational and physiotherapists.
Our analysis of health in the schools white paper – what it includes
Health is mentioned just 145 times in the SEND consultation document – including footnotes and references.
Explicit pledge to protect and enhance EHC plans for children with the most complex needs. Crucially document offers no definition of complexity
Reforms will work ‘hand-in-hand’ with the NHS 10 Year Health Plan -based on early intervention to stop needs escalating
Health professionals will provide ‘wrap around support’ via integrated health, care, and family services, to identify and address children’s needs earlier as soon as they emerge.
Children with the most (undefined) complex needs will be able to continue to attend special schools but there will be new expectations and pressures on those schools and staff to share expertise with mainstream schools.
We will be doing a full analysis of different sections of the Schools White Paper very soon.
The Council for Disabled Children (CDC) is delivering a series of online events in March 2026 in relation to the SEND Reform Government Consultation. Two of the sessions are for parent carers, with others reserved for professionals working in different settings.
Contact is running a series of focus groups for parent carers this month, but these are now all booked up.
Over the last couple of days, there have been news reports about parents of disabled children ‘getting paid’ to transport their children to school in England.
Contact is concerned that this completely misrepresents the situation and risks fuelling resentment.
One newspaper report suggested parents were getting a Personal Travel Budget, but were walking or cycling their child to school. We have never heard of this.
Parents driving considerable distances
Instead, what we hear day in and day out, is that many parents are driving considerable distances to transport their child to school because there is not a suitable school locally.
They are reimbursed for the cost of petrol, but not for the wear and tear on their car and not for the hours each week they spend transporting their child. Many have to give up work. Far from ‘being paid’, families are absorbing the cost of a system that does not meet their child’s needs.
Anna Bird added:
“Many children have care needs through the night and cannot be safely transported to school on public transport. Families with disabled children would love nothing more than to wave their child off for the school day, to catch the bus or walk with friends, but this is not their reality.”
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