The new school year begins this week in some councils in Scotland and is approaching soon elsewhere. Many families are buying uniforms, packing school bags and getting back into routines. But if your child is disabled or has additional support/learning needs, they can be a lot more to think about.
Whether your child is starting a new school, moving class or simply returning after the summer holiday, taking a little time to prepare now can help make the transition easier.
We’ve put together this back-to-school checklist for families across England, Scotland, Wales and Northern Ireland. Every child is different, so not every point will apply to your family. We hope it helps you feel more prepared for the new term.
1. Check your child’s education support is up-to-date
2. Make contact with the school before the first day
Starting the conversation early can help everyone feel more confident.
It may help to:
Introduce yourself to your child’s new teacher or support staff.
Find out who your main point of contact will be.
Share any important updates from over the summer.
Check you’re signed up to any school communication apps or systems.
If your child is anxious about change, ask whether they can see photos of their classroom or teachers before term starts. Schools often have email addresses on their websites where you can contact someone without needing to call an office. Alternatively, or you can use the dedicated communication app/platform you would normally use.
3. Review medical and healthcare arrangements
If your child has medical needs, it’s important that everyone knows what support they’ll need from day one.
Check that:
Any healthcare plan has been reviewed and shared with relevant staff.
Medication is in date, clearly labelled and ready to be taken into school if needed.
Emergency medication is available where required.
Ask for any old/out of date medication has been handed back to you.
Staff have received any necessary training to support your child safely.
Emergency contact details are up to date.
4. Confirm transport arrangements
If your child receives home-to-school transport, don’t assume everything is unchanged from last year. Check:
Whether your local authority, Education Authority and/or transport provider has confirmed transport arrangements.
Pick-up and drop-off times.
Whether there are any new drivers or escorts.
That transport staff understand your child’s communication, medical or sensory needs.
If something doesn’t feel right, contact your local authority/trust as soon as possible.
5. Check equipment and technology
Summer is a good time to make sure everything is working properly.
This could include:
AAC or communication devices.
Hearing equipment.
Tablets or laptops used for learning.
Wheelchairs or mobility equipment.
Sensory aids such as ear defenders, fidget tools or weighted items.
It’s also worth labelling equipment, clothing and uniform to help prevent items being lost.
Depending on where you live in the UK, schools have legal duties to support disabled pupils and make appropriate or ‘reasonable’ adjustments.
Think about whether your child needs support with things like:
Toileting or personal care.
Eating or drinking.
Rest breaks.
Sensory regulation.
Managing fatigue.
Movement around school.
Exam access arrangements (where relevant).
Flexible timetables or transition support.
Clothing/uniform.
Check the relevant policies relating to your child’s needs on the school website before requesting adjustments that are needed.
If your child’s needs have changed, speak to school before term begins rather than waiting.
7. Prepare for the school routine
Returning after six weeks can be a big adjustment.
To help your child prepare, you could:
Gradually move bedtime and morning routines back towards school hours.
Talk through what the first day will look like.
Use visual timetables or social stories if these help your child. You can find many good social stories on Twinkl’s website, as well as making your own using Canva, for example.
Practise the school journey if they’re starting somewhere new.
Pack school bags and organise uniform a day or two before term starts.
Remember that it can take time to settle back into routine, and that’s OK.
8. Don’t forget the practical things
A few final checks can help avoid last-minute stress.
Have you remembered to:
Label school uniform and PE kit? If you have a child that likes to take their shoes off for example at school, it’s always worth labelling inside the shoes too.
Check whether any clothing or footwear needs replacing?
Update emergency contact details?
Tell school about any changes at home or in your child’s circumstances?
Check dates for inset days, appointments or school events?
9. Benefits and financial support
The start of the school year can be expensive, and disabled children and their families often have extra costs.
It is worth checking your eligibility, if you don’t know it already, for the following:
Whether you will need to budget for replacement sensory items or specialist equipment.
10. Lunch, snacks and dietary needs
This can be a huge issue for many families. Especially those with children living with ARFID (Avoidant Restrictive Food Intake Disorder). Check the school’s policy online, especially where a child needs a specific drink, in their water bottle but the school has a water-only policy. Consider the following:
Does school know about any allergies?
Have safe foods changed over the summer?
Is a packed lunch agreed if needed?
Are feeding plans up to date?
Does your child need support at lunchtime?
11. Friendships and well-being
Returning to school can be exciting, but it can also feel overwhelming. Children may worry about making friends again, coping with change or moving into a new class or school.
Parent carers could think about:
Arranging a playdate before school starts.
Looking at photos of school.
Talking positively about familiar adults.
Recognising that settling in may take time.
12. Changes over the summer
Has anything changed since last term?
For example:
New diagnosis.
Medication changes.
Mobility changes.
Behaviour changes.
Communication changes.
Puberty.
Sleep difficulties.
Schools won’t automatically know unless someone tells them. If things have changed, it’s worth getting in touch.
13. If it’s not perfect, don’t panic
The first few weeks of term are often a settling-in period for everyone. Even with careful planning, things may not go exactly as expected.
If something isn’t working, try speaking to school/college as early as possible. Small adjustments made early can often prevent bigger problems later.
Every child settles at their own pace, and it’s perfectly normal for routines to take a little while to fall back into place.
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.
All children and young people feel worried sometimes; it is a normal part of growing up. But anxiety can become a problem when a young person feels stuck in it.
We’re pleased to share with you two new resources to help you support your disabled child with anxiety.
Latest Department for Education (DfE) data shows that permanent exclusions and suspensions in schools in England have decreased overall. However, there has been an increase in children being suspended or excluded from primary school.
Pupils with special educational needs and disabilities (SEND) continue to have higher rates of suspension and permanent exclusion. Children with education health and care (EHC) plans remain three times more likely to be suspended or permanently excluded. Those on SEN support are four times more likely.
This reflects what Contact hears on our helpline, where we continue to receive calls from parents when disabled children are suspended or permanently excluded. This includes enquiries from parents of younger children, including reception and years one and two. We also hear from parent carers who feel under pressure to remove their child, find another school or are “advised” to keep a child at home for part of the day.
Exclusions must be legal and proportionate
Angie Fenn, Contact’s Head of Information and Advice, said:
“Schools must follow the law. Permanent exclusions must be for disciplinary reasons, be fair and proportionate. A decision to permanently exclude must be a last resort. Statutory guidance includes details on steps to take before making a decision to suspend or exclude a disabled child, such as increasing their SEN support or considering alternative disciplinary measures.
“We speak to parent carers who are concerned about what the exclusion means for their child’s education and future. Many tell us that their disabled child has not received the identified support they need, prior to the exclusion. Our helpline can advise on next steps and school and local authority duties.”
Contact’s website has lots of information for what to do if your child is at risk of suspension or exclusion or they are put on a part-time timetable against your wishes. Our expert parent advisers on our helpline are also on hand to talk through these issues.
DfE updates exclusion guidance
The DfE has published updated guidance on suspension and permanent exclusion for local authority-maintained schools, academies and pupil referral units. We welcome the focus on off-rolling and safeguarding in schools.
The update follows the Children’s Wellbeing and Schools Act receiving Royal Assent in April.
Changes to the guidance, which came into force from 26 July, relate to a setting’s legal right to direct pupils off-site to improve behaviour; how settings can manage moves to another school; and instructions around separating pupils for safeguarding reasons.
The guidance also expands the list of examples of “off-rolling”. This is where schools pressure parents to take their child off the school roll, either to home education or another setting.
Contact Cymru’s Wellbeing Programme has helped many parent carers across Wales get much-needed support and make connections with other families in the same boat.
This October, we’re bringing the eight-week programme to Wrexham. The course is open to families of disabled children and those with additional needs across North and Mid-Wales.
It’s a chance for parent carers to get some respite, focus on their own wellbeing, and meet other parent carers in a small, friendly setting.
The workshops are fun and relaxed and facilitated by Contact Cymru’s Parent Adviser, Sophie. Each two-hour session will cover topics such as:
Building your confidence, assertiveness and self-esteem.
How to handle meetings with schools and professionals.
Practical ways to manage stress and anxiety.
Where you can find ongoing support.
A free lunch buffet and hot drinks will also be provided during each session.
The programme is for parents and carers of children with disabilities or additional needs (with or without a diagnosis) who live in Wales.
This programme is funded by the National Lottery Community Fund in Wales as part of Contact Cymru’s Building Resilience programme. The programme also includes parent carer online chats and our Wales Listening Ear service.
Mae lleoedd bellach ar gael ar gyfer rhaglen lles wyth wythnos Contact Cymru yn Wrecsam.
Mae Rhaglen Les Contact Cymru wedi helpu llawer o rieni sy’n ofalwyr ledled Cymru i gael cymorth sydd ei angen yn fawr ac i gysylltu â theuluoedd eraill sydd yn yr un sefyllfa.
Ym mis Hydref, rydym yn dod â’r rhaglen wyth wythnos i Wrecsam, ar gyfer teuluoedd plant ag anableddau ac anghenion ychwanegol ledled Gogledd a Chanolbarth Cymru.
Mae’n gyfle i rieni sy’n ofalwyr ac yn brysur gael seibiant, canolbwyntio ar eu lles eu hunain, a chwrdd â rhieni eraill sy’n ofalwyr mewn awyrgylch bach a chyfeillgar.
Mae’r gweithdai yn hwyl, yn hamddenol ac yn anffurfiol, ac yn cael eu hwyluso gan Sophie, Cynghorydd Rhieni Contact Cymru. Bydd pob sesiwn dwy awr yn ymdrin â phynciau fel:
Adeiladu eich hyder, eich gallu i sefyll dros eich hun a’ch hunan-barch.
Sut i ymdrin â chyfarfodydd gydag ysgolion a gweithwyr proffesiynol.
Ffyrdd ymarferol o reoli straen a phryder.
Ble gallwch ddod o hyd i gymorth parhaus.
Darperir bwffe cinio am ddim a diodydd poeth hefyd yn ystod pob sesiwn.
Mae’r rhaglen ar gyfer rhieni a gofalwyr plant ag anableddau neu anghenion ychwanegol (gyda diagnosis neu hebddo) sy’n byw yng Nghymru.
Ariennir y rhaglen hon gan Gronfa Gymunedol y Loteri Genedlaethol yng Nghymru fel rhan o raglen Adeiladu Gwydnwch (Building Resilience) Contact Cymru, sydd hefyd yn cynnwys cyfarfodydd ar-lein i rieni sy’n ofalwyr a’n gwasanaeth ‘Listening Ear’ yng Nghymru.
This summer we are delighted to launch our new Memory Garden.
When we lose someone special, the memories they leave behind continue to shape our lives. Their love and impact bloom in the stories we tell.
Our Memory Garden is a special online space where you can remember and celebrate the life of someone you love. It’s a place to share your cherished memories, honour their legacy, and leave a lasting dedication that family and friends can visit for years to come.
How to create a lasting dedication and help our garden grow
Sharing in our Memory Garden is simple. Tell their story, post a photo or write a few words about what made them so special.
Whether you’re remembering a parent, grandparent, child, sibling, partner, friend or colleague, our Memory Garden is here whenever you want to pause, reflect and celebrate someone who will always hold a special place in your heart.
Every memory you share becomes part of our growing garden of remembrance.
Thank you for helping to make your memories blossom into love.
Donate in memory to Contact
If you would like to, you can also make a donation to Contact in memory when you share your tribute.
Every gift, no matter the size, helps us continue supporting families raising children with additional needs. It’s a meaningful way to celebrate the life of someone special by helping other families get the support, information and community they need.
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
The government is consulting on proposals to improve Carer’s Allowance, the main benefit for carers.
The Carer’s Allowance call for evidence is particularly looking at whether to introduce an earnings taper, alongside changes to rules that cap how many hours a claimant can work.
The government says that Carer’s Allowance has become outdated and does not reflect modern work and care patterns. It was first introduced half a century ago.
We have long called for the government to review the Carer’s Allowance earnings cliff-edge. Carer’s Allowance rules mean carers lose the entirety of their financial support if they earn even one penny too much.
The action plan aims to improve the lives of unpaid carers. The plan concentrates on three themes: recognising the role unpaid carers play; ensuring they can access the support they need; and helping them to reach their full potential.
We’re delighted to announce that we’ve secured funding from the National Lottery Community Fund to launch our By YourSide service in Northern Ireland for the first time.
By Your Side is Contact’s hospital support service for families with disabled, seriously ill, and additional needs children. We provide support whatever the health condition and whether a diagnosis is in place or not.
Our By Your Side Advisers offer free drop-in support at participating hospitals, giving parent carers the opportunity to talk through anything that is affecting them. From benefits and finances to education, diagnosis, health services and emotional wellbeing.
Where you can find us
Our Northern Ireland service launches this summer in Belfast and Antrim, and you can find us at the following hospitals. You don’t need an appointment; simply drop in during our service hours.
Antrim Area hospital between 10.30am-1.30pm on the following dates:
Tuesday 28 July
Thursday 17 September
Tuesday 13 October
And we’re at the Royal Victoria Hospital, Belfast, between10.30am-1.30pm on Thursday 20 August.
Susan Walls, Head of Programmes for Northern Ireland says:
“We’re incredibly grateful to the National Lottery Community Fund for funding By Your Side in Northern Ireland. We know how overwhelming and stressful a hospital stay or appointment can be for families, and so having someone independent who can listen, offer practical advice and provide emotional support makes a real difference.
“This is a significant milestone for Contact. By Your Side is now available in three of the UK’s four nations: England, Scotland and Northern Ireland. It means we can reach and support more families than ever during some of their most challenging moments.”
Visit our Contact NI page to see our full offer for families in Northern Ireland. Visit our By Your Side page for more information on our service and participating hospitals around the UK.
Our first Sheffield Positive Imaginings performance last Sunday was a wonderful success.
More than 80 people joined us at the start, and over 70 stayed until the end. The woods were beautiful and cool, and families were full of enthusiasm and lovely feedback.
The Positive Imaginings Show is an immersive, family-friendly outdoor theatre experience. The performance moves along an accessible woodland route, meeting different characters and imagining a brighter, fairer future along the way.
At our interactive Woodland Workshops, children can play and connect with nature, while adults share their hopes for the future and develop skills and confidence to engage with politicians about the issues that matter to them.
Live in Yorkshire? Join us next week
Now Positive Imaginings is coming back to Ecclesall Woods in Sheffield, with three free events for families.
Thursday 30 July, 1.30pm–4.30pm Please arrive at 1.15pm • Positive Imaginings Circus Show at 1.30pm • Woodland Workshop at 3.30pm Book Thursday’s event
Friday 31 July, 10.30am–1.30pm Please arrive at 10.15am • Positive Imaginings Circus Show at 10.30am • Woodland Workshop at 12.30pm Book Friday’s Event
Saturday 1 August, 10.30am–12.30pm Please arrive at 10.15am • Woodland Workshop from 10.30am Book Saturday’s Workshop
All events take place next to the Woodland Discovery Centre in Ecclesall Woods, 260 Abbey Lane, Sheffield S7 2QZ.
Welcoming disabled children and their families
Accessibility is at the heart of these events. The site has an accessible car park and toilet, and we’ll provide a quiet space and ear defenders. Children are welcome to move around, make noise or take time away whenever they need to.
The venue is also served by the 218 bus. Thanks to National Lottery funding, we can help some families with travel costs through vouchers that can be used in supermarkets and other shops.
Please share this invitation with other families who might enjoy the events. We’d love to see you in the woods!
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.”
This Q&A for was families in England, but you can find advice on this topic wherever you live in the UK on our school transport webpages.
Thank you to everyone who submitted a question to our recent home-to-school transport Q&A. We received a wide range of enquiries from families across England, covering transport to school, college and post-16 education for children and young people with SEND.
Although every family’s circumstances are different, several common themes emerged.
Transport changes after age 16
The most common questions related to what happens when a young person turns 16.
Many families were surprised to learn that the law changes at the end of compulsory school age. While local authorities have a legal duty to provide free home-to-school transport for eligible children aged five–16, there is no equivalent duty to provide free transport after age 16. Instead, councils must publish a Post-16 Transport Policy Statement explaining what support is available locally and how eligibility is assessed.
Having an education, health and care (EHC) plan does not automatically entitle a young person to free transport after age 16. Local authorities should consider individual needs, disabilities, ability to travel independently and other relevant circumstances when making decisions.
Understanding your local authority’s transport policy
Many questions highlighted how important it is to read your local authority’s transport policy carefully.
Each council sets out its own eligibility criteria, application process, appeal arrangements and, where applicable, any parental contributions towards transport costs.
Families should always check application deadlines, as late applications may delay decisions before the new academic year.
Appeals and challenging decisions
Several families asked what they could do if transport had been refused or changed.
Where a local authority refuses transport or asks families to contribute towards costs, there is usually an appeals process. When challenging a decision, it can help to refer directly to the council’s own transport policy, relevant statutory guidance and any supporting evidence about the young person’s needs and circumstances.
Parent preference and school transport
A number of questions focused on situations where a school had been named because of parental preference.
In some circumstances, where a local authority believes another nearer suitable school could meet a child’s needs, this may affect entitlement to transport. Whether this applies depends on the individual circumstances and how the placement decision was made.
Personal Transport Budgets
Some families asked whether they could arrange transport themselves.
Where transport support is agreed, some local authorities may offer a Personal Transport Budget or similar arrangement instead of organised transport. This allows eligible families to make their own travel arrangements where appropriate.
Individual circumstances matter
We also received questions about reduced timetables, shared care arrangements, changes in family circumstances, very young children starting school, transport during periods of extreme heat, and young people aged 19–25.
These situations often depend on individual circumstances, the relevant legislation and the local authority’s published policies. In many cases there is no single answer that applies to every family.
Need advice about your own situation?
Our responses in this Q&A were tailored to each family’s individual circumstances. If you need advice about your own child or young person’s transport arrangements, our free helpline can provide guidance based on your specific situation.
Thank you again to everyone who took the time to send us a question.
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.
The meeting marked a major milestone in our mission to elevate parent voice. We wanted to put families directly in front of the key decision-makers who have the power to fix this system.
“A sledgehammer to crack a nut”
When a young person lacking mental capacity turns 18, their families often find it difficult to help them access savings.
They are forced to navigate the complex, often costly and lengthy Court of Protection process just to look after money that belongs to their child. Contact is supporting parent Andrew Turner’s campaign to change this.
Jim Islam CEO of financial provider OneFamily summed it up:
“Asking families to go through the Court of Protection process to access a Child Trust Fund is like using a sledgehammer to crack a nut.”
Contact Changemakers Claire Stockton and Michele Creed closed the meeting by powerfully sharing their own lived experiences. They spoke about the heavy emotional toll the current rules place on families and the urgent changes needed.
Justice Minister praises “powerful case” made by campaigners
The meeting saw a positive, solution-focussed tone from the government, driven by the genuine commitment of Justice Minister, Baroness Alison Levitt.
Baroness Levitt praised the tireless work of families. She stated that campaigners like Andrew Turner and Contact have made a “powerful case”. She directly acknowledged the flaw in the current legal framework:
“The law is in the wrong place, and we have created a system that is disproportionately complex and time-consuming.”
Baroness Levitt, Justice Minister
The Minister emphasised that fixing this problem requires cross-governmental working. Rachel Blake from the Treasury echoed this sentiment, noting that they were “very keen to understand the issues.” The shift in energy was palpable, with Lord Young observing that “the whole tone of this debate has changed thanks to Alison [Baroness Levitt].”
Cross-party and financial industry support
We were backed by a fantastic turnout of supportive MPs, including John Milne, Sarah Smith, Ben Coleman, and Daniel Francis. All spoke passionately about the urgent need to resolve this barrier for families.
Major financial providers OneFamily, Nationwide, and Santander also joined the call for a simplified, government-backed solution. Crucially, they shared details of the vital work that they are already doing, using their own self-developed industry process to release funds safely to parents without forcing them through the courts.
Contact’s view
“Seeing a parent-led campaign and watching our families stand in Parliament, in a room full of Ministers, MPs, financial providers and other stakeholders was a really powerful moment.
Contact is dedicated to amplifying parent voice. Last week proved that when decision-makers sit down and truly listen to the realities of what disabled families are experiencing, it is hard to ignore the need for change.
We now need to see this desire for change turned into a workable solution for families, so that young people everywhere can access their savings”.
Maria Scholey, Campaigns Engagement Lead at Contact
What you can do next
If you are worried about your child’s savings being locked away, or want to help support our campaign, you can:
Join the community: Connect with hundreds of parents navigating this exact issue, share tips on using the provider “industry process”, and get active in the Unlock Our Savings Facebook group.
The Timms review into PIP’s steering group has published its interim report, which ultimately finds that the disability benefit is “highly-valued” but “no longer fit-for-purpose”.
The report says that “many disabled people speak powerfully and negatively of the process of applying for PIP, describing it as “dehumanising”, “soul destroying”, and “degrading”.” More than 90% of respondents found the experience of claiming PIP to be negative.
The report backs up our submitted evidence that the system does not reflect the experience of people with fluctuating conditions. As a result, “PIP functional assessment does not always fully reflect real world need.” The system is also difficult to navigate for people advocating on their own behalf.
However the financial support offered through PIP to meet the genuine additional cost of disability is valued and necessary. Going forward, we urge the government to ensure that remains.
Contact’s view on the interim report
Derek Sinclair, our Family Finance Adviser, said:
“We agree that the current PIP assessment process is not fit for purpose and needs changing. Families tell us that the current process is dehumanising and stressful. It has clearly created low levels of trust in the fairness of the PIP system. We want to see PIP assessments replaced by a new process that treats disabled young people with fairness and dignity.
“However alongside improving the PIP assessment process it’s vital that in moving forward, the Timms Review acknowledges the need to continue providing financial support to all of those facing additional disability-related costs and does not seek to restrict spending on PIP.
“Much of the discussion around PIP is framed around rising claimant numbers and expenditure. However, the country has only recently emerged from a global pandemic and associated public health crisis, alongside rising poverty and a cost-of-living crisis. During this period many disabled people and carers have experienced significant deterioration in their physical and mental health. Meanwhile, demand for already-stretched health and social care services has increased. The solution to rising levels of ill-health should focus on tackling the root causes of poor health and poverty, rather than restricting access to disability benefits.
“We believe any eventual reforms of PIP arising from the Timms Review must be rooted in the real experiences of disabled people and their families and recognise the genuine additional costs associated with disability. Families need a system that supports participation and independence, treats disabled people with respect, and provides security rather than fear and uncertainty.”
Contact’s calls for change
We are calling for:
A more person-centred assessment process that properly reflects people’s real day-to-day experiences.
Better recognition of mental health conditions, neurodiversity, fluctuating conditions and the impact of supervision and night-time care.
Greater flexibility and accessibility in assessments, including giving claimants choice over face-to-face, telephone, video or paper-based assessments.
Fewer unnecessary reassessments for people with lifelong conditions unlikely to improve.
Improved training and understanding among assessors.
More detailed and transparent decision-making.
Properly funded advice and advocacy services to help families navigate the system.
Stronger safeguards to ensure disabled people are treated with dignity and respect throughout the process.
The public narrative must stop framing disability benefits as a barrier to work. Many disabled young people rely on PIP to access education, training, volunteering and employment opportunities.
The Timms review is expected to publish its final report in the autumn.
By Your Side Scotland was launched five years ago. Through the service, we support families with disabled children, children with additional needs and children with serious health conditions in hospital settings.
Hospital stays and appointments can be an overwhelming time for families. By Your Side offers free information, advice and emotional support to families while their child is staying in or attending hospital. Families can talk to a parent adviser about anything that is affecting them. From benefits and finances to education, diagnosis, health services and emotional wellbeing.
This new funding will enable us to run a By Your Side service on a monthly basis at the Queen Elizabeth Hospital in Glasgow. Families will be able to meet with two Contact parent advisers during drop-in sessions.
Alongside the service at Queen Elizabeth Hospital, we also continue to run our existing drop-ins at University Hospital Wishaw.
You can see us at both hospitals over summer on the following times and days. Look out for the Contact information stand inside the main entrance. No appointment is needed, come and see us at any time during our service hours:
Queen Elizabeth University Hospital, Glasgow – Tuesday 14 July, 10am – 2pm.
University Hospital Wishaw – Tuesday 28 July, 10am – 2pm.
University Hospital Wishaw – Tuesday 25 August, 10am – 2pm.
Queen Elizabeth University Hospital, Glasgow – August. Date tbc (see our Contact Scotland Facebook page for updates).
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