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?
We want to hear from families your experiences of SEN units and views on how they might help improve inclusion. We are running some online focus groups in August and September to hear from you. Book a place today.
We are offering a £20 voucher as a thank you for taking part.
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.
Have Your Say
Contact are running some focus groups so we can hear your views and experiences of SEN units, please book a place here. They are online and we are offering a £20 voucher as a thank you for taking part.
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.
The Disabled Children’s Partnership (DCP) has today launched its latest report and campaign, Fight for Ordinary, which sets out a positive vision for a reformed special educational needs and disabilities (SEND) system in England, while also protecting existing legal rights.
The report lays out a five-point plan to make ‘once-in-a-generation’ changes that will improve the lives of disabled children, young people and their families.
It also highlights the simple fact that disabled children and young people and their families want nothing more than the ‘ordinary’ things that other children take for granted.
Overwhelming public support
New research commissioned by the DCP demonstrates that there is overwhelming support for disabled children’s ‘ordinary’ expectations to be protected by law – almost 9 in 10 (89%) of the 2,000 adults surveyed agree that disabled children and children with additional needs should have legal rights and protections that give them the same education and opportunities as their peers.
What’s more, 94% of those polled believe all children should have a school place where they feel happy, belong, and can achieve; 93% believe children should have timely access to healthcare and 91% agree children should have the opportunity to make friends and take part in after-school activities.
This includes the chance to feel happy and safe in nursery, school or college, the opportunity to make friends and take part in after school activities and to have access to the right health and social care support when needed.
Fight For Ordinary’s launch comes after it was revealed in May that the Government is preparing major changes to special educational needs and disabilities (SEND) provision in English schools. There have been rumours that this could include the removal of Education, Health and Care Plans (EHCPs) for some children.
Many families, charities and campaign groups in the SEND community remain deeply concerned that the removal of EHCPs – statutory documents designed to support young people up to the age of 25 – will take away their child’s legal right to an education that is built around their specific needs.
Creating a system that works
Anna Bird, CEO of Contact and Chair of the Disabled Children’s Partnership, said: “Whilst we welcome the Government’s commitment to addressing the failings in the SEND system, it is important to state that this is a once-in-a-generation moment that we cannot afford to get wrong.
“In order to create a system that works for children, young people and their families the Government must strengthen support for children who do not have EHC plans, and ensure sufficient funding and accountability for all parts of the system. Reform must not dilute rights, remove vital protections or disrupt existing support. Anything else would be a catastrophic failure, and the cost of inaction would be perilously high – for children, families and public services.
“Families should not be expected to fight for ordinary expectations – an enjoyment of learning, of sitting in a classroom with friends, of taking part in after-school activities and the chance for parents to pursue careers to support their children without having to put their working lives on hold. Our polling shows that the public overwhelmingly supports SEND families in their desire to achieve ordinary expectations for their children. This issue can no longer be brushed aside – the time for decisive, collaborative action is now.”
Key recommendations
The Fight For Ordinary report’s five key recommendations include the implementation of:
Legally guaranteed support for all children who need it, not only those with an Education, Health and Care Plan (EHCP).
The correct provision of training and specialist support to ensure that nurseries, schools, and colleges are set up to properly support disabled and neurodivergent children.
Comprehensive local area plans that ensure the right mix of mainstream and specialist school places along with sufficient specialist staff.
Systems which can adequately measure the progress and experiences of children and young people with SEND, to ensure no child is left behind.
Adequate funding and the right incentives within the SEND system to ensure reforms succeed.
MPs on the Education Committee are calling for urgent reform of disabled children’s social care after an inquiry found disabled children and their parents were “treated with suspicion” and subjected to “inappropriate assessment” when reaching out for help.
Anna Bird, Chief Executive of disability charity Contact said: “We warmly welcome the Education Committee’s report on social care, in particular their recommendations calling for national eligibility for disabled children and their families to access help from social care. The families we support will recognise the committee’s assessment that the current social care system overlooks disabled children. It is far too hard for families with disabled children to qualify for social care support and there’s a lack of transparency, so it is unclear who is entitled. So many families struggle on without short breaks or direct payments providing enormous amounts of care alone, sometimes for many years.
“Fixing disabled children’s social care is a crucial part of fixing the SEND system because they are key pieces of the same jigsaw. Schools are currently dealing with the fallout of a lack of social care support for disabled children and their families. We are delighted the committee is backing the Law Commission’s proposals for reform. We hope the government takes their recommendations seriously and implements them in full. This would be a huge step towards improving the lives of disabled children and their families.”
The committee’s recommendations are in line with Contact’s key social care asks for disabled children. Evidence submitted to the inquiry by Contact, the Disabled Children’s Partnership and the National Network of Parent Carer Forums are quoted in the report.
The Education Committee says there is an “urgent need” to improve access to short breaks, respite care and holiday provision. It was “unacceptable” over half of parents couldn’t access the short breaks and respite services they needed. The report also condemned the culture of ‘parent blame’ that families experiences when asking for help.
“It is deeply concerning to hear that parents of disabled children are being treated with suspicion and undergoing inappropriate assessment processes when reaching out for help.”
Committee inquiry recommendations
The Department for Education:
Must set how it will implement the proposals in the Law Commission’s review of disabled children’s social care no later than two months following the publication of the review, (due in September) shortly including a timeframe and assessment of any spending required to implement the proposal.
Must review the training provided to children and families social workers and ensure that social workers are being adequately trained in the specific needs of disabled children and their families and the distinct type of assessment processes needed for this group.
Should introduce national eligibility criteria for disabled children’s social care and ensure that local authorities are clearly communicating these to families.
Should conduct a review of the availability of short breaks, respite care and holiday provision for disabled children to understand where the shortages are most acute.
Should work with the Ministry of Housing, Communities and Local Government to fund local authorities to be able to offer this provision to all families entitled to it.
Should ensure that the specialist workforce for disabled children is included in the children’s social care workforce strategy.
About the Education Committee
The Education Committee is a House of Commons select committee of MPs that scrutinises the work of the Department for Education (DfE). While the committee cannot force the Department for Education to act on its recommendations, it is often powerful and influential vehicle for shaping policy.
In it they highlight the increasing cost of school transport and cite one of the reasons as being children with special educational needs travelling long distances because there are no suitable school places locally. The report makes recommendations for reducing the home to school transport bill for local authorities.
One of those suggestions is a 3 mile eligibility criteria (including most SEND students), at the discretion of local authorities. Contact is concerned about this as we have seen the impact of “local discretion” on Post 16 transport where it is being stripped away across the country. This criteria will not work for many SEND children and young people.
Anna Bird, Chief Executive of Contact, said: “We are concerned that some of the proposals in today’s report dilute parents’ rights and may not meet the needs of pupils and students with special educational needs. These include the use of pick up points, the promotion of independent travel, the increase of Personal Transport Budgets and the proposal to transport to the nearest suitable school rather than a parent’s preferred school. All of these proposals could have a significant and detrimental impact on SEND children and young people, limiting choices and outcomes.
“We understand the very real difficulties of increasing costs at a time when local authority budgets are under so much pressure. 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.
“We hear first-hand from parent carers across the country that a lack of council provided transport can have a devastating impact – with students sometimes missing out on school and families forced to give up work and left in financial hardship. It is unfair to the balance the books on the backs of disabled children and young people. “
The positives
The report positions transport as playing a “vital role in our education system”. And, it recognises that transport is linked to the current failures in the system – where many disabled children and young people just cannot go to their local provision. It also recognises that journeys are necessary, and families need support with them.
It is encouraging that the voices of parent carers are included and that the report refers throughout to the specific circumstances of many disabled children/young people.
“Assistance with travel to school can play an important role in reducing some of the barriers faced by families with children with SEND, with which other families do not have to contend.”
The report notes the importance of council transport for many families with SEND children and young people and refers to our Contact survey where 81% of families receiving transport were satisfied with the service.
Inline with our Close the Loophole campaign the report recognises the gap in transport for 16-18 year olds and the impact on SEND families. It proposes that transport should be available for eligible children from reception to Year 13 (with further proposals for Year 13 onwards for SEND students).
What we’re doing
We’re campaigning for change with our Close the Loophole campaign to fix the loophole in law for 16-18 year olds transport.
We’re running a project looking at home to school and college transport thanks to funding from the Motability Foundation.
We can help – if you need information or advice on school/college transport look at our online resources for transport in England or contact our Helpline.
Tonight MPs voted on the Government’s Pathways to Work Green Paper, which proposes changes to make claiming Personal Independence Payment and Universal Credit health element harder. Despite a lot of disquiet among MPs and lots of last minute changes, the bill passed.
Anna Bird, Chief Executive at disability charity Contact, said: “The families we support will feel despair and continuing fear after tonight’s vote. While the government made important concessions at the 11th hour, the chaotic way the bill was brought forward has added to a feeling of concern and lack of trust. It is essential the government follows through on their promise to listen and work with disabled people in their review of these proposals.
“Although there will be a review of the assessment for Personal Independence Payment we don’t know the outcome of that. And in addition new claimants for the Universal Credit health element who do not meet severe conditions criteria will still be receiving lower payments of that element which will also be frozen for 4 years. This is scheduled to happen from April 2026. So many people with disabilities and health conditions and their families will be substantially worse off. Our own research shows that families with disabled children are among the poorest in the country and 44% of parents of disabled children or their partners have a disability or health condition themselves. This vote will make life harder for many of them.”
Anna Bird, Chief Executive at Contact and Madeleine Cassidy, Chief Executive at IPSEA said: “It’s unsurprising that there has been a rise in the number of EHC plans because it is currently the only reliable way to secure support in school for a child with special educational needs. The latest data shows the system needs rapid intervention, but getting rid of EHCPs is not the answer. Education, Health and Care (EHC) plans are a vital part of the SEND system and must be protected. They provide legally enforceable rights to support for children and young people, and we are clear that the Government’s forthcoming White Paper must not erode these legal rights. But making SEN support a stronger part of a schools’ duties will ensure more children can take part in school without necessarily first going through the legal process of getting an EHC plan.
“If we strengthen the offer of SEN support – such as brain breaks and some forms of smaller group work, support at playtime and speech and language therapy – some children may not require an EHC plan to get the support they need. It would also begin to restore families’ confidence in the education system. While this approach will require investment in resources and training, research shows this early intervention produces cost savings further down the line, as well as being the best option for children, who shouldn’t have to fail at school before they receive the support they need.
“What we’re proposing is simple and achievable. Contact and IPSEA have drafted an amendment to the Children and Families Act that could make a meaningful difference right now. If the government aims to make mainstream education more inclusive, the first step must be strengthening the legal duties around SEN support.”
Contact’s research has found that half of families with a disabled child who have had to pay back Carer’s Allowance have stopped claiming the benefit as a result. This is despite it being a vital source of income for carers under enormous physical, emotional and financial pressures.
We also found that:
A quarter of families with disabled children hit with Carer’s Allowance overpayment had contacted the Carer’s Allowance unit about changes in their wages, but the information wasn’t updated in time.
Nearly half (47%) had trouble getting through to the Carer’s Allowance unit. 9% were not able to reach them at all.
93% told us having to repay Carer’s Allowance made them stressed, anxious and unwell. 34% said they went without essentials. 33% had to give up work or reduce their hours, and 48% increased other debts.
Our Counting the Costs research, carried out last year, found that 11% of families with disabled children have been overpaid Carer’s Allowance by the Department of Work and Pensions (DWP) in the last year. Of those: 73% said it was because of their earnings. On average parents had to repay £1,045.
The Carer’s Allowance earnings limit is now £196 per week. That’s the equivalent of 16 hours a week at the National Living Wage. But families whose earnings sometimes go even slightly over £196 are still likely to get caught out in a fundamentally unfair system.
A rigid, stressful system
Alex left her career as a police officer to care for her two adopted children, who both have additional needs.
When the children were old enough, Alex got a job at a supermarket. She informed the Carer’s Allowance unit about her change in circumstances and what hours she planned to work. She worked 20 hours for three months and her Carer’s Allowance was still paid, so she thought it was ok to continue. Then she received a letter to say that she owed almost £1,000.
Alex told us: “You need a financial adviser to work out how much you can work or work a lot less than the threshold to be safe. The system is so rigid, and it’s really stressful as it’s always at the back of your mind. I don’t expect to get money I’m not entitled to. But there should be some way of tapering off, so if you go over the earnings limit by a few pence, the whole amount of Carer’s Allowance isn’t taken away. That would actually make work pay.
“I did a shift the other day and should have finished at 10. I didn’t finish till 10.30, and I was worrying about going over the earnings limit. If someone phones in sick, I’d like to say I can help out, but I can’t. In the run up to Christmas there are extra hours and night shifts available, but I can’t take them.
“I’d like to do 15 hours but have had to restrict myself to 10 hours. It’s just gone up to 12 hours because of the increase in the earnings limit that has just come in. There’s no flexibility in the system, and it makes it much harder for those who want to work.”
A long running issue for working parent carers
Anna Bird, Chief Executive of Contact, said:
“Together with a group of charities, we are calling for the halt of new overpayments debt until the government’s independent review of the issue concluded and recommendations implemented. We are very concerned that significant numbers of families with disabled children are being put off claiming a vital source of financial help due to the stress of being overpaid.
“The system is difficult enough to navigate. If a working parent carer juggling very stressful circumstances is trying to pass on information to the Carer’s Allowance unit and that is not being acted on quick enough, it is shocking that the carer is then penalised.
“The Carer’s Allowance earnings limit is a long-running issue for working parent carers. Our helpline regularly hears from families with disabled children who, despite the increase in the earnings limit, are still likely to be affected by overpayments without reform of the flawed system.”
The Department for Work and Pensions (DWP) has said it is exploring a system of targeted texts and emails to alert claimants to potential overpayments.
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