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.
Contact would like to thank the 100 parent carers, disabled children and siblings who this summer joined our new project A Future for All, an arts-led project putting families, especially those often left out of climate change conversations, at the heart of change.
In partnership with Hope for the Future and Rowan Environmental Arts (REA), families enjoyed 10 outdoor events across Yorkshire between June and August.
Highlights included six spectacular storytelling performances, and four woodland workshops, where parent carers had dedicated space to reflect and discuss action on climate change, the environment, and issues that matter to their families, whilst their children enjoyed fun forest activities.
Parents who attended the summer events summed them up beautifully saying:
“We need so much more of this. The children love it. It’s such an accessible way to get kids and parents involved.”
“A very positive, inclusive, and engaging performance. It struck the right balance for a wide range of ages and confidence levels, including autistic children.”
In our next phase of the project, we’ll be working with even more families online to create collective manifestos for change. Keep your eyes peeled for invitations to join us in the coming months.
We’ll be sharing these manifestos with policymakers. And we’ll share video footage of our magical performances.
This project is all about building a brighter future for ALL. Especially parent carers and disabled children who may feel the impacts of climate change acutely.
Together, we’re making sure parent carer voices are heard and lead the climate and nature conversation, to help shape a fairer, more inclusive future.
The report calls for a new legal framework, national eligibility criteria and a legal duty to assess and meet the needs of disabled children.
And it highlights how outdated and fragmented laws from the 1970s and 1980s have created confusion, inconsistency, and unfairness for families with disabled children who seek help from social care services.
Opportunity to fix an outdated system
Contact’s CEO Anna Bird welcomed the report. She described the proposals as a “a once-in-a-generation opportunity to fix an outdated system that leaves thousands of families with disabled children without vital support.”
Anna added:
“There are more children living with complex health needs and disabilities. But it has become increasingly hard to qualify for social care support. Criteria is shrouded in mystery and different depending on where you live. And the application process has been too focussed on safeguarding and created a culture of parent blame when families are simply asking for help.
“The proposed reforms would not only relieve pressure on families caring 24/7. They also would reduce pressure on schools who are often left to pick up the pieces from social care failings. And it would help reduce poverty. We urge the government to accept the proposals in full and start on reform without delay.”
Take action
Contact is asking families to join us in our calls to the government to implement the reforms. Parents can use this template to email their MP to urge the government to accept the reforms and implement them swiftly. (This will take less than a minute).
The letter asks your MP to write to Josh MacAlister, Minister for Children and Families, urging the government to accept the recommendations and publish an implementation plan within two months.
What are the Law Commission’s key recommendations?
The report includes 40 recommendations for legislative reforms 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
The Law Commission recommends that people assessing disabled children should be required to have ‘the skills, knowledge and competence” to do so. It also calls for a single duty that would enable parent carers to request an assessment for themselves.
Children, parents, and carers should be in developing the new statutory guidance and national eligibility criteria. The Law Commission proposes a phased introduction of national criteria to allow time to assess their impact on local authority budgets.
Contact worked closely with the Law Commission to ensure they spoke parent carers. The final recommendations are in line with our key social care asks for families.
The Government has up to six months to provide an initial response to the Law Commission recommendation and up to a year to provide a full response stating which law reforms they plan to take forward.
Contact is offering free training toparent carersinterested in sharing their story in the media.
We are particularly keen to offer training to parents who are not able to access their young person’s Child Trust Fund /Junior ISA account because their child lacks mental capacity.
If you have a child aged 15-20 unable to access their Child Trust Fund because of their learning disability and you are interested in doing media training, please complete the application form. Places are limited.
The media training sessions will be with an experienced trainer in a supportive environment. The training provides excellent transferable skills in communication and presentation. Interested? Sign up today.
We particularly want to hear from:
Parents who have a young person with a learning disability aged 15-20 who are not able to access their child’s Child Trust Fund money, because they are with a provider who won’t give access without going through the Court of Protection process.
Parents who have struggled to use the Court of Protection process to access their child’s Chid Trust Fund.
Parents who have been put off the Court of Protection process due to the complexity or the costs of needing a GP letter or help from a solicitor.
Parents who have found it difficult to save for their child’s future because of the difficulty accessing Child Trust Funds and Junior ISAs for young people with a learning disability.
80,000 disabled young people in England & Wales risk losing £210 million. A difficult and costly process means many are unable to access the savings held in their Child Trust Fund.
This is a once in a generation opportunity to make the process of asking for social care support simpler and fairer for families with disabled children in England.
Too often support only arrives at crisis point
Families with disabled children know first-hand that the system needs an overhaul. So we look forward to the publication of the report. We will be encouraging the government to take forward the recommendations to improve the process of getting help from social care for families with disabled children.
Amanda Elliot, Contact’s Health and Social Care lead, said:
“Social care is consistently the third most common inquiry to our helpline. Families struggle to understand what support they’re eligible for. We hear from parents whose child the local authority refused a needs assessment or who faced delays getting support. Too often support only arrives when families hit crisis point. Parents also tell us they felt humiliated and blamed when they sought help from social care services.
“That’s why we eagerly anticipate the publication of the Law Commission’s report. And we invite parents to get in touch with us to help us ensure desperately needed change does happen.”
We’d like to hear your experiences
We are keen to ensure parents are heard during meetings with officials and MPs and in the media following the publication of the Law Commission’s report.
If you have an experience of social care that you would like to share, please get in touch with [email protected]
We particularly want to hear from families where:
You and your child have been turned down for social care support despite clear need or what you have been awarded is not adequate. You may have experience of the complaints process.
You and your child have been awarded social care support, but it is not the same as another family whose child has the same condition that you know who live in another county or area.
You and your child have been turned down for social care support because they say that the needs are health related and there is a dispute between the Local Authority and ICB about who should fund the package of care.
You applied for social care support on the basis of need, but it was assessed as a safeguarding concern despite no evidence of neglect or abuse. This has put you off asking for social care support.
Ramandeep’s son Harry, who has Down’s syndrome and learning disabilities, can’t use public transport and relies on taxis to get to school.
But when he turned 16, his council stopped providing transport support almost overnight.
Ramandeep said: “Nothing in Harry’s needs had changed. There was absolutely nothing apart from the fact he turned 16.”
Disabled young people like Harry 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.
This “loophole” in the law, combined with a crisis in council funding, means many teenagers – who often have to travel much further to a school or college that meets their needs – are being refused the transport support they rely on.
“Being the fighter that I am, I took the local authority to appeal,” Ramandeep explained. “I lost at first appeal but won at second appeal. The local authority has awarded me a personal transport budget, and I receive just under £10 a day to get Harry to school, which is 10 miles away. But the actual cost of the taxis is £46 per day.
“The council seem to think that that’s appropriate. They haven’t taken into account that I’m a single parent, and that I’m trying really hard to work. All they see are costs.”
Sign our letter calling for a fairer system
Without transport, parents are having to give up jobs to drive their child themselves. Young people are missing out on vital education. And families are struggling under increased financial pressure.
We’ve teamed up with Ramandeep and thousands of other parent carers to campaign for a fairer transport system where decisions are based on need – not age.
Later the same day, MPs will be debating a petition to “Retain legal right to assessment and support in education for children with SEND” that has received over 120,000 signatures. Our event will also be a chance to talk to MPs ahead of that debate.
Families in Leicester featured in a Channel 4 News piece this week about cuts to school transport for young people aged 16-18 with special educational needs.
Leicester City Council has said they will only fund school transport for disabled young people post 16 in exceptional circumstances. Many families now face uncertainty if they will charged or have to make up a shortfall after receiving a Personal Transport Budget instead of their child’s previously provided school bus or taxi.
Leicester City Council is not the only local authority to cut the transport budget for this age group. There is currently no legal obligation for local authorities to provide transport to post 16 so it has become an easy cost to cut. And we know from our own research and from calls to our helpline that this picture is being replicated across England.
Una Summerson, Head of Policy at Contact, said: “We understand the very real difficulties of increasing costs at a time when local authority budgets are under so much pressure. But taking away transport for young disabled people means they are more likely to drop out of school or college, have fewer qualifications and life skills and there will be higher costs in the future. It is the definition of false economy. We believe greater access to welcoming and inclusive local schools and tackling expensive privatised bus and taxi companies would be a good place to start, but it will take time for this to take effect. That’s why we are calling on the government to close the loophole and ensure fairer access to school transport for disabled students.”
The impact of losing school transport
Contact’s 2024 research showed that where councils provide transport it really works and is beneficial to the whole family:
81% of families with council transport are satisfied/extremely satisfied with it.
58% say it helps promote their child’s independence.
40% of parent carers say it helps them to work.
But once a child turns 16, transport is less reliable. Of those who previously received transport at five-15 years and turned 16:
Almost 60% faced changes to transport (e.g. asked to pay or receive a personal transport budget), including 15% whose transport stopped altogether.
20% are now charged for transport at 16.
40% had to reduce hours or give up work to transport their child themselves.
The government says there is a bursary to help teenagers with the cost of school transport. But our research found that the 16-19 bursary and discretionary funds are neither accessible nor sufficient to cover travel costs. Only 10% of families had applied, with 70% saying they thought they were not eligible or had not heard of it.
What are we doing?
We have launched a parent-led “close the loophole” campaign for fairer transport for disabled students. We’re asking for a system where decisions are based on need, not age.
Some mainstream schools have specialist units or resource bases which provide extra support to children who have additional needs.
The government wants to increase inclusion. Could specialist units or resource bases be part of the solution to the current SEND crisis?
Thank you to everyone who shared their experiences of SEN units and inclusion with us.
What are the issues?
When specialist units and resource bases work well, they enable inclusion. However, the success of these units is dependent on how well they are resourced, as well as how effectively they interact with the wider mainstream school. It’s important that they are staffed by those who have appropriate teaching qualifications.
Recently, many local authorities have increased the number of specialist units in mainstream schools in their areas without any government guidance.
If the units are set up in a rush, as a means of reducing costs, they can lack resources. If this happens there is a risk disabled children are segregated from their peers and taught only in the unit, without any interaction with the wider school.
Calls to Contact’s helpline suggests these units vary dramatically from one school to another.
My experience of a specialist unit
Here our education policy lead, Imogen Steele, shares her experience.
“Having been born with cerebral palsy, I attended a specialised unit in a mainstream secondary school, and it was truly amazing. The unit was designed to support a small group of pupils with physical disabilities. I was completely included in the mainstream school. All of my classes took place in the wider school. I used the unit for physio, OT, a place to rest when I needed and a base to catch up on any work I missed. In all of my classes, I was supported by Learning Support Assistants who were attached to the unit.
“However, many units function very differently. I can imagine how isolating it would have been to be stuck in the unit all the time, taught away from my peers in a separate room with different teachers without access to the same opportunities as others just down the corridor. “
What Contact thinks
It’s important that the Department for Education hears from parent carers and young people when shaping policy , so we welcome their survey.
Contact would like to see clear guidance for specialist units to ensure they are appropriately funded, staffed and founded on the principle of inclusion, respecting and protecting every child’s right to a mainstream education, whilst not replacing the role of special schools.
Done well specialist units have the potential for more young people to feel included in their local school community. However, increasing them without suitable regulations or guidance, could lead to them being entirely separate in teaching and location from the mainstream school.
Complaints about education and children’s services are still dominating its casework. Housing has now moved to the second biggest area of concern overtaking adult social care.
The LGSCO investigates complaints about local authorities. It can look at how a council has dealt with a child’s special educational needs. They can also consider complaints about social care and housing. You can’t complain to the Ombudsman about something which you can appeal to the SEND Tribunal about.
Daily battle
Amanda Elliot, Health and Social Care policy lead at Contact, said: “Many families with disabled children use the complaints process of the LGSCO because they are unable to access the support they need for their child. It is a long and time-consuming process to follow the local authority complaints process and then go to the LGSCO, so it is not something entered into lightly. The record number of complaints to the LGSCO is a sad indictment of the daily battle that parents talk about and the state of the public services they rely on.
“It’s why we believe the government should implement the Law Commission’s proposals in full and why it’s crucial that the forthcoming SEND reforms create a system that works for every child – strengthening support for children who do not have an Education, Health and Care plan, while protecting current rights.”
Contact’s social care asks include a separate social care assessment pathway and national eligibility criteria.
Get the latest SEND updates, benefits advice, practical help caring for your child, plus free workshops and family events in our weekly email newsletter.
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