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.”
The government has announced a £50 million cash injection for Disabled Facilities Grants (DFG) in England this financial year. They say it could support 5,000 more children and adults with disabilities who need home adaptations. An adaptation is a change made to your home to make it more accessible and safer for a disabled child or adult. The money will be paid to local authorities in February boosting this year’s allocation of money to the DFG pot.
Contact regularly hears from families who need adaptations to make caring for their disabled child at home easier. Whether that’s building an accessible bathroom or creating a quiet space, or installing ceiling track hoists.
Unsuitable accommodation
Una Summerson, Head of Campaigns at Contact, said: “We welcome this additional money for Disabled Facilities Grants. Many families with disabled children live in unsuitable accommodation and need housing adaptations. This makes caring much harder and sometimes dangerous. There are often long waits to get assessed for a Disabled Facilities Grant. While the average DFG is £10,000, some projects cost more. We’ve heard from families asked to pay towards the adaptations while others need to negotiate that the council and housing association split the cost.
“The extra money announced at the weekend will go some way to help families who need adaptations to to enable them to care for their disabled child more easily and safely. We would also like to see an increase in the upper limit of the DFG to reflect higher building costs and local authorities should promote the grants more widely. In addition, it’s important to address the shortage of Occupational Therapists who are needed to carry out the assessments.”
More than a quarter (27%) of all families are not aware of the Disabled Facilities Grant, available from the council to help pay for building works, ramps, hoists.
Only 12% have applied for a Disabled Facilities Grant. Of the families who did apply, 43% found the process poor or very poor. Over half (57%) said the grant did not cover the full cost of the adaptations needed.
The average shortfall was £7,391. To find that money, a third (35%) had to borrow or take a loan. 30% used their savings, but more than a quarter (26%) had to do without or scale down the adaptations they really needed.
Scrapping the two-child limit for Universal Credit claimants from April 2026.
Expansion of free school meals to all children in households in receipt of Universal Credit.
£600 million investment in the Holiday Activity and Food programme in England over the next three years.
Extension of the Warm Homes Discount to an additional 2.7 million households in Great Britain.
Increasing the maximum amount of childcare costs that can be reimbursed when more than two children are in childcare.
Best Start Family Hubs – improving support locally with SEND co-ordinator.
Disabled children particularly vulnerable to living in poverty
Anna Bird, Chief Executive at Contact, said:
“We welcome the government’s commitment to reducing child poverty. We know from our work with families calling our Family Finance helpline, and through extensive research, that families with disabled children are particularly vulnerable to living in poverty due to the extra costs of disability and the difficulty of juggling work and caring.
“Many families face impossible choices every day including whether to heat their home or use electrical care equipment. To fill their food cupboards or fund essential therapies. There is lots to welcome in the government’s strategy, including measures to remove punitive benefit cuts and bolstering help with costs at school and for essentials like heating. But we are disappointed the strategy does not sufficiently recognise disabled children as a distinct priority group.
“We would have liked to see measures to backdate Universal Credit when Disability Living Allowance (DLA) is awarded; an increase in the Disabled Facilities Grant to recognise the increase in building costs; improving access to Child Trust Funds for disabled young people; and improving access to childcare for disabled children by opening special schools in the summer holidays.”
What we support in the Strategy
Scrapping of the two-child limit for Universal Credit claimants from April 2026. This is a very welcome announcement, which should have a major impact on reducing child poverty within larger families. Research shows that disabled children are likely to live in larger households. However, there are concerns that families on Universal Credit with a transitional element may not see any gains in the short term. This is because the extra child payments they get may be deducted from the transitional protection they currently receive
Moves to reduce costs for families: The Strategy includes measures to reduce essential costs for example, easier access to childcare for families on Universal Credit, extending Free School Meals and extending Warm Home Discount and support for parents returning from parental leave.
Support for families in temporary or inadequate housing: The Strategy recognises the harm of families living in temporary accommodation which can have devastating impacts on children’s stability, schooling and wellbeing.
The metric to measure child poverty and check the success of the strategy will take into account the extra costs of disability. And the strategy does recognise the particular difficulties for disabled parents. Our research shows that almost half of families with disabled children live in a household with an adult with a disability.
Where the Strategy risks failing disabled children
Despite the positives, we are concerned that the Strategy does not sufficiently recognise disabled children as a distinct priority group. Disabled children and their families often face:
Much higher day-to-day living costs (specialist equipment, therapies, accessible transport, utilities, adaptations) beyond what generic “cost of living” support can cover.
Additional barriers to work for parent carers (care needs, need for flexible or specialist childcare, medical appointments).
Greater vulnerability to housing instability, delays in services and the potential proposal to cut health element of Universal Credit for disabled under 22.
As part of our campaign into children’s continuing care, we learned that many children who get the NHS care package miss out on their education due to gaps in nursing care and disputes over who should support during the school day.
Parents face a range of problems
Problems arise because of the blurred lines between educational legal duties to ensure a child with medical needs can access education, and healthcare duties to provide treatment for a child with health needs.
Children with continuing care needs typically need round-the-clock nursing care and help to breathe, eat, move and manage pain and seizures.
Parents told us they faced a range of problems including:
Difficulties getting paid carers to go into school to support a child with a tracheostomy. (A tracheostomy is a tube inserted into the windpipe that allows a child to breathe or allows mucus to be cleared from the lungs).
Refusal from the NHS to pay for in-school nursing support for their child.
Problems recruiting and retaining trained carers able to manage their child’s medical needs in school.
Teaching unions have blamed the fall in the number of NHS nurses in schools and efforts by health bodies to push responsibility onto already over-stretched high needs funding budgets.
Lack of guidance an issue
One parent said her daughter was prevented from attending school due to staff shortages. Another time she was forced to go into her child’s school every lunchtime to see to her child’s tracheostomy needs because there was no-one else available.
“I was dropping off my daughter at school at 9.30am, then having to go back at lunchtime to change her tracheostomy in a small cupboard in the school entrance hall.”
Families in this situation are pinning hopes on guidance expected before Christmas which aims to clarify who is responsible for providing vital medical care for their child during the school day.
“The lack of guidance is the real issue. Changing a tracheostomy is seen as a reasonable adjustment in some areas, but not others.So depending on where you live, you qualify for something completely different. It’s very unjust,” explained a parent of two children with complex medical needs.
What the law says
Section 100 of the Children and Families Act 2014 says schools have a statutory duty to make arrangements to support pupils with medical conditions so they can access education to ensure children with health conditions like diabetes, epilepsy, asthma, or more complex needs are not excluded.
Schools must have policies, individual healthcare plans, and reasonable adjustments in place. The duty is about access to education, not delivering healthcare.
The NHS Act 2006 and Health and Social Care Act 2012 stipulate that the NHS is responsible for clinical diagnosis, treatment, ongoing medical management and specialist procedures like tracheostomy care, catheterisation and tube feeding, as well as training and indemnity for staff who support children in school. This includes responsibility for community nursing, specialist paediatric services and therapies children may need during the school day.
New guidance expected “soon”
A Department for Education official recently told Health Conditions in School Alliance (HCSA) that non-statutory guidance on medical responsibilities was currently with their lawyers. However, they are hoping to publish it before the end of this year. The government is also currently reviewing wider statutory guidance for Supporting Pupils at School with Medical Conditions (in England).
The HCSA – which Contact is a member of – has lobbied for much stronger protections in the non‑statutory guidance and revisions to the 2015 statutory guidance to ensure children with health conditions are not excluded from school because of a lack of support for their health conditions. It calls for:
Clarification that health remains the responsibility of the NHS, not schools (apart from reasonable adjustments under the Equality Act)
Schools facilitating care only when safe and appropriate with proper training and indemnity
An individual healthcare plan jointly developed by parents and clinicians for all children with medical conditions
Support our campaign
We are calling for urgent reform of continuing care for children with the most complex health needs who need round-the-clock support.
Our research including information from freedom of information requests to 42 English ICBs found:
53% of families referred for continuing care for their child were turned down. To apply, a nurse, doctor, social worker or teacher must make a referral.
Overall spending on children’s continuing care fell by £2.9 million. This is despite high inflation in this period and growing numbers of medically complex children living longer.
Those that do get it, face breakdowns in care packages due to staffing gaps. Many live in constant fear it will be taken away due to annual reassessments.
There is a growing shortage of health-trained care staff including community children’s nurses and care agency workers. There is currently no dedicated national plan to grow and support the workforce delivering home-based care for children with complex health needs, so families aren’t always getting the care package they are entitled to.
Children have weaker legal protections than adults who need health funded support.
In today’s budget the Chancellor, Rachel Reeves, has announced that the two-child limit will be scrapped altogether from April 2026.
The two-child limit currently means that many low-income families on Universal Credit only receive payments for their eldest two children, and not for a third or subsequent child born after April 2017. It has been one main drivers of child poverty among larger families. Its scrapping will come as a huge relief to many larger families with disabled children.
Anna Bird, Chief Executive of disability charity Contact, said:
“The scrapping of the two-child limit is welcome and an important step in the government’s Child Poverty Strategy. Research shows that disabled children are more likely to live in bigger households and 20% of households affected by the two-child limit have a disabled child. Many of the families we support have significant extra costs, running expensive electrical care equipment such as hoists or oxygen concentrators or paying for vital therapies.”
However, Contact is concerned that some families on Universal Credit may not gain financially. This is due to the risk that the higher child payments they get for a third or subsequent child could be deducted from their transitional protection payments.
Anna Bird added: “The government needs to urgently clarify whether there will be any special rules to ensure that families’ additional child payments from April 2026, won’t lead to the erosion of any transitional protection they receive. We will be seeking reassurances on this matter.”
Other budget announcements
Other benefits announcements in the budget that could impact families with disabled children include:
Reforms to the tax breaks provided to those using the Motability Scheme. These are likely to lead to increase costs for those leasing a Motability car.
Additional funding for the Youth Guarantee, a scheme to ensure all young people have access to education, training or employment placements.
Increasing the numbers of people who will have face to face assessments for health-related benefits.
Contact’s Family Finance team are looking at the detail of the budget and will share more tomorrow.
The report, which cites Contact’s school transport research throughout, concludes that SEND reforms must address school transport pressures, prioritise families’ needs and protect school transport for those that rely on it so that all children can access education safely and fairly.
The NAO recognise that spending on home to school transport has increased significantly over the past decade, largely reflecting the growth in children with special educational needs and disabilities (SEND) who must travel further to find suitable schools. Some councils struggling with budgets, are cutting this support post 16 – leaving disabled children and young people and their families facing impossible choices.
Commenting on the NAO’s report Contact’s campaigns lead, Una Summerson, said: “School transport isn’t a luxury for children with SEND – it’s a lifeline. For many, it’s the only way they can access education. Many can’t travel independently or safely use public transport, and many may stay in education for longer, so councils have a clear duty to provide suitable transport.
“As the NAO points out, councils are struggling to meet their legal duties while managing shrinking budgets – but it’s unfair to make disabled children and young people pay the price. Cuts to school transport is forcing parents to give up work and leaving young people unable to continue or complete their education. Post-16 school or college transport is especially at risk, thanks to a loophole in the law that leaves providing it up to the discretion of local authorities- and risks shutting the school gate on young disabled people’s futures.”
We’ll be looking at the NAO report and what reporting what it found in more detail next week.
16-19 transport – tell us if it works for you
The NAO also notes gaps in data on home to school transport collected by the DfE. Whilst the DfE did publish data this week we are keen to hear more from families about their experience 16-19 transport.
We will represent what you tell us in our submission to the Public Accounts Committee -a body of MP’s tasked with scrutiny of public spending – who are carrying out an Inquiry into school transport.
Earlier this year, we asked you to nominate your friends and family for the Contact Awards 2025.
The Contact Awards recognise the countless and often unrecognised achievements of families with disabled children up and down the country.
Our awards are the highlight of the year for us. The nominations we receive are a powerful reminder of the amazing people within our community. As the charity for families with disabled children, it is important to all of us at Contact to shine a spotlight on the many incredible people that we represent.
We received so many inspiring nominations, over 400 nominations across six categories, and our panel of judges had an incredibly taxing time narrowing the list down.
We’re excited to announce that we’ll be announcing our finalists next week!
And because we think everyone deserves recognition, we’ll also be sending certificates out to all nominees.
The Contact Awards final ceremony is taking place at the Palace of Westminster on Monday 24 November. Over the next couple of weeks, we’ll be sharing stories from some of our finalists.
Thanks to everyone who nominated in our awards – it has been a real privilege to read every single nomination. From dedicated parent carers to supportive siblings, and campaigners changing lives in their communities, we’re so happy to have the chance to recognise these unsung heroes.
Danielle, a parent carer from Essex, shares her twins’ journey through the special educational needs and disabilities (SEND) system and what she told Minister Gould must change for families like hers.
My twins, Teddy and Barney, were born 14 weeks premature. They’ve had a mountain to climb from day one, with multiple diagnoses including Autism, ADHD and developmental delay. Despite everything, they’ve made remarkable progress. They’re bright, capable boys with huge academic potential – but also significant communication, social, emotional and sensory needs.
With education, health and care (EHC) plans and full 1:1 support in place, they thrived in their small village mainstream school. We felt hopeful about their futures. But the move to secondary school turned into a nightmare.
Dehumanising, isolating, and overwhelming appeal process
We contacted 20 schools before finding two specialist provisions we felt could meet their complex needs while still giving them opportunities to access a differentiated mainstream curriculum. We made our wishes clear to the local authority as early as Year 5. But months later, the local authority named a mainstream school that had already expressed grave concerns about being able to keep Teddy and Barney safe.
Our requests for meetings and assessments were ignored. Mediation was ignored. In the end, we were forced into an exhausting appeal process, fighting two cases at once while caring for the boys and trying to keep working. The process felt utterly dehumanising, isolating, and overwhelming. No parent should ever have to go through it.
Thankfully though, through working closely with Teddy and Barney’s Headteacher and classroom team at their primary school, engaging with the wonderfully supportive SENCO at the ‘named’ mainstream secondary school, working with our personally-funded educational psychologist, valuable advice from SENDIASS, personally funded legal training from IPSEA, and with the overwhelming support of the community of friends in related fields willing to provide evidence statements and advice, we made it through with a positive outcome. But so many families aren’t as fortunate.
I know children right now who are still at home, without education, because of systemic failures.
Change is possible
And sadly, Teddy and Barney’s story is not unique. Families are left chasing answers, ignored, and treated as adversaries rather than partners. At Bright Futures Essex, the parent-led support group I run, we hear the same frustrations again and again. Parents don’t want a fight – they want to be listened to, given honest advice, and supported with compassion.
From listening to families, and teachers, we have identified the following things that must change:
Collaboration and Communication – Parents and schools need honest, timely communication and a culture of trust. We should be working with the local authority, not battling against it.
Teacher Training – Teachers need practical, specific training on Autism, ADHD, PDA, language delay and trauma-informed strategies. Without this, “inclusion” is just a word on paper.
Attendance – The one-size-fits-all approach to attendance does not work. We need to stop rewarding attendance as it is an absolute lottery and has nothing to do with ability or attitudes to learning. This is a divisive strategy and bares little connection to effort or attainment. We are approaching it all wrong. By starting with the goal of 100% attendance we are setting young people up to fail. We should be looking at why they are not attending school and how we can make school feel safe and accessible.
The single biggest change that could make a real difference would be the reintroduction of the Specialist Teaching Service. Specialist teachers are experts who work directly with children, support teachers, and guide families with real strategies. They could bridge the gap while families wait for assessments, and give schools the tools they need to support children immediately.
Having a voice at the highest level
On Monday 15 September, I was honoured to meet Minister Gould after the SEND Rally. Thank you to Contact for helping give me this platform.
She listened with empathy to my experiences and other SEND families, and later in the Westminster Hall debate, she committed to working with families going forward. That gave us a glimmer of hope — but councils must step up right now.
Our children deserve a system that meets their needs, values their potential, and gives them the futures they deserve.
Too many disabled children with complex health needs and their families miss out on vital NHS-funded support due to a postcode lottery of care. This support, known as continuing care, provides tailored care packages for children with complex, often life-limiting, health needs that cannot be supported through normal health services in England.
Children who need continuing care funding require round-the-clock care and support to breathe, eat, move, and manage their pain. Yet this group of children have weaker legal protections than adults who need health-funded support.
As a result, some families are left to provide nursing and complex care for their child, alone.
We are keen to speak to families who have experience of children’s continuing care about the following issues:
Your child’s continuing care package has been reduced or removed by your local Integrated Health Board (ICB).
You’ve applied for continuing care support for your child, but been turned down.
Your child has an agreed continuing care package but there are no nursing carers to deliver the care.
You live in fear that your child’s continuing care package it will be taken away due to yearly or frequent reviews.
It comes after the committee carried out evidence sessions with parent groups, charities and professionals with experience of the special educational needs and disability (SEND) system in England. This included Imogen Steele, Contact’s SEN policy lead.
Imogen spoke about what we hear on Contact’s helpline from families. That includes the importance of retaining existing legal rights to support for children with special educational needs; the importance of improving the SEN support system to help children early before needs escalate; the need for improved accountability and the importance of school transport.
We are delighted that the committee recognises that SEND reforms must not be based on any withdrawal of statutory entitlements for children and young people. In addition the report recommends the following, which are in line with our SEN support, accountability and school transport asks:
SEN support
The Department for Education (DfE) should publish a unified national framework for ordinarily available provision and SEN support.
The committee recommends statutory requirements setting out a baseline of ordinarily available and SEN support that can be accessed in all schools. This would include resources, specialist expertise, and equipment. We welcome this as it should make it easier to seek redress if SEN Support is not being delivered. However we would like it to go a step further by making the graduated approach of assess do plan and review, a statutory requirement. We call for this in our 3 SEN asks.
Accountability
The Government must extend the powers of the Local Government Ombudsman to cover complaints about the delivery of education, health and care (EHC) plans, SEN support and other appropriate inclusive education for children with SEND in schools, multi-academy trusts and other education settings.
Ofsted should take into account a school’s inclusion practice as part of its inspections and for there to be mandatory SEND training for Ofsted inspectors.
Local Authority staff should receive improved training on SEND law.
We welcome the addition of these recommendations. Families tell us these are important steps to help them rebuilt trust in the system. We had identified them in our accountability briefing paper.
School transport
Statutory transport provision should be guaranteed based on clear criteria such as distance from education settings, level of need, and other relevant factors to ensure no young person is unfairly disadvantaged.
Review home to school transport and identify costs across regions.
We support the provision of transport for all ages based on a clear criteria. This must not exclude more disabled students from the transport they need with particular consideration of the impact on families.
We agree that no young person should be unfairly disadvantaged by their journey to school or college and the transport available to them. We welcome the committee’s recognition of the particular issue of transport for 16-19 year olds. And we were delighted their report refers to Contact’s research on the impact of losing transport when a child turns 16, for no other reason apart from their age.
We welcome further investigation into costs and funding of home to school transport. Developing local and inclusive education capacity is a long-term project. But the current funding crisis needs to be urgently addressed so that there can be adequate transport provision for disabled children and young people.
We agree that regional data will be important. But the aim must be to lead to efficiencies in provision without decreasing availability or quality of service. It must not lower the bar to match costs.
We support Independent Travel Training where appropriate. However, we caution that families say it is not always a viable option for their young people.
Health
The departments for Health, Education and Social Care should work more closely together.
Powers of the SEND Tribunal should be extended to allow it to issue binding recommendations to health services, not just education providers.
The DfE and DHSC should urgently develop a joint SEND workforce plan to address shortages and build capacity across education, health, and care services.
The committee’s recommendation for the Departments of Education, Health and Social Care to work more closely is vital to ensure the SEND system works. If a child’s needs are unsupported at home, life is much harder for their family, caring 24/7. This has a knock-on effect in the classroom too. Health and social care are key parts of the puzzle for solving the SEND crisis.
We welcome the recommendation to extend the power of the SEND Tribunal to cover health. This is one of our health asks. If health support is specified in an EHC plan, health bodies would be legally obligated to provide it. There would be clear consequences for non-compliance. Families have told us the importance of this to them.
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