Contact welcomes the government’s £4 billion investment over three years to make mainstream schools more inclusive and reduce the adversarial battles families face.
Anna Bird, CEO of Contact and Chair of the Disabled Children’s Partnership, said:
“The government’s promise to tackle the SEND crisis so that every disabled child can achieve and thrive is a vision we share.
“We strongly welcome investment in better training of teachers, readily-available specialist support and more accessible buildings in mainstream schools where SEND pupils can be mates they grow up with. These changes could transform the lives of hundreds of thousands of children.
“We are concerned though that the government has failed to answer parents’ questions about whether legal changes will reduce existing rights. Families are worried these might make it even harder to hold the system to account when things go wrong or secure an education, health and care (EHC) plan or a special school place if their child needs one.
“We will look at the details of the white paper and work with families, ministers and MPs to ensure changes to the law work for every child with additional needs.”
Inclusive Mainstream Fund
The proposed £1.6 billion Inclusive Mainstream Fund could significantly improve school-based support (currently known as SEN Support), reducing the need for families to pursue lengthy EHC plan processes simply to secure appropriate help.
Investment in early identification, tailored interventions and adaptive teaching is essential. Supporting staff to recognise and respond to common special educational needs is a positive step.
However, strengthened SEN Support must not become a substitute for specialist provision where it is required. EHC plans remain a vital legal safeguard and must be protected.
It is currently unclear whether the fund will be ringfenced. We would support ringfencing to ensure funding is used specifically to improve SEND provision. We would also welcome clear national oversight potentially through an accountability mechanism similar to Ofsted — to ensure transparency and impact.
Experts at Hand (£1.8bn)
We applaud the proposed ‘Experts at Hand’ service. This will create a local bank of SEND professionals including occupational therapists, educational psychologists and specialist teachers. Access to specialist expertise without requiring an EHCP could reduce delays and unmet need.
However, this proposal will only succeed if there is a credible plan to address workforce shortages. There are currently significant gaps in the availability of occupational therapists, educational psychologists and speech and language therapists. Without a parallel workforce expansion strategy, delivery risks falling short of ambition.
We support the new requirement for all teachers to be trained to support children with SEND. And we welcome the £200 million already announced for teacher training.
The proposal to use special and alternative provision schools to provide outreach and short-term placements recognises their expertise. However, this must not overstretch specialist settings or compromise the support available to children already placed there.
The role of specialist provision
We agree that children should not have to travel long distances to access suitable support. Greater quality local provision is welcome.
However, locality can never take precedence over a setting’s ability to meet a child’s full range of needs. Some children will always require specialist provision, and there must remain a clear, protected place for specialist settings within the system.
Supporting families to navigate the system
We hope the government will build on investment in Best Start Family Hubs to strengthen SEND outreach and provide practical support to families navigating the system, particularly at key transition points.
What happens next?
We will be closely examining the Schools White Paper when it’s published later today to ensure:
It does not become harder to secure an EHC plan.
Specialist provision remains available where needed.
Families can still hold local authorities to account.
We’ll continue working with families, policymakers, Ministers and MPs to ensure reforms genuinely reduce conflict and improve outcomes. We will also keep families updated as more information becomes available.
The Department for Education (DfE) has announced that national standards and price bands will be introduced for independent special schools as part of government SEND reforms in England.
The government says it will set clear national price limits and tougher standards to help make sure specialist placements help children make progress – instead of higher bills for councils.
The government hopes this will stop the postcode lottery where the support families get depends on where they live, and make sure children everywhere can access high-quality SEND support.
In response to the announcement Contact’s Imogen Steele said:
“We welcome the government’s commitment to making sure that profits are not put before children’s education. However, it is important to recognise that independent special schools currently fill critical gaps where local provision does not exist. Special schools remain essential for children who require complex education and health support, and any policy must ensure children’s needs remain the primary focus.
“At this stage, several aspects of the announcement are unclear: whether it distinguishes between independent day and residential special schools; whether the proposed fee bands apply only to education, or education and health needs together. We strongly believe that decisions should be based on individual needs. While fee bands may offer transparency, caution is needed to avoid inadvertently limiting access to the specialist support that children genuinely require to keep them safe and help them learn.”
What are independent special schools?
There are two types of independent special school:
Section 41 schools are approved by the Secretary of State and must meet specific SEND‑related legal duties. They must properly consider placement requests from families with an EHCP (Education, Health, and Care Plan).
Non‑Section 41 independent special schools did not previously have the same statutory SEND duties. However, the government is introducing national price bands and statutory SEND standards for all independent special schools, meaning non‑Section 41 schools will now be checked and regulated more like Section 41 schools.
We are still waiting to hear the detail about the government’s long-awaited proposals to reform the special educational needs and disabilities (SEND) system in England.
Recent media coverage has highlighted the strength of concern about SEND reforms. Today the Guardian reported that members of the Disabled Children’s Partnership including Contact, have urged the government to ensure reforms must not weaken children’s legal rights or reduce access to support.
What is a White Paper, does it mean the law has changed?
A White Paper sets out the government’s proposals for future legislation or law. Changes to the SEND system will be part of a wider Schools White Paper.
Here are the stages of a White Paper:
When the Schools White paper is published there will be a 12-week consultation. This is an opportunity for parents and interested groups to respond to the proposals and have their say. Changes can be made to the white paper before it’s formally presented to parliament.
A Bill will go through Parliament, followed by a period of implementation and transition.
If there are to be changes to legislation this needs to be included in the King’s Speech. This year’s King’s Speech is in May.
The Bill then has to go through both the Commons (where MPs review and debate the Bill) and the House of Lords (where Lords review and debate the Bill). During this time further amendments can be made.
The whole process can take several years and during that time the existing law and existing rights do not change.
How has Contact been involved in shaping the White Paper?
We are clear: reform must strengthen support and safeguard children’s existing rights. We’d like to see a legal guarantee of support for every child with SEND. Today the Guardian newspaper has published Disabled Children’s Partnership’s red lines, which call on the government to ensure any reform of the system does not:
strip away legally enforceable plans for children who need them
force children out of stable placements or disrupt essential support
narrow the definition of special educational needs to restrict eligibility
abolish the SEND Tribunal, a vital safeguard for families
cut off support at 18 for young people who need longer to transition into adulthood
Legislation known as Awaab’s Law came in to effect at the end of last year to ensure people who rent their home live in safe healthy housing.
The new law is named after toddler Awaab Ishak who died from mold exposure in his home. It only applies to the social rented sector such as council housing or homes rented from housing associations.
What does Awaab’s law mean for social housing tenants?
The key change for tenants is that landlords now have to follow strict timeframes for responding when a tenant reports an issue.
Emergency hazards (e.g. dangerous electrical faults, damaged external doors or windows and major leaks) must be investigated and made safe within 24 hours.
Significant damp and mould hazards must be investigated within 10 working days. They must be made safe within a further 5 working days.
If social landlords can’t meet those deadlines, they will be obliged to offer alternative accommodation. And if they fail, tenants can take legal action against for breach of contract. They can also make a claim via a complaints procedure.
Find out more about the new law and your rights as a tenant
This information has been translated into a number of languages and includes a short video that explains Awaab’s Law.
Over the last couple of days, there have been news reports about parents of disabled children ‘getting paid’ to transport their children to school in England.
Contact is concerned that this completely misrepresents the situation and risks fuelling resentment.
One newspaper report suggested parents were getting a Personal Travel Budget, but were walking or cycling their child to school. We have never heard of this.
Parents driving considerable distances
Instead, what we hear day in and day out, is that many parents are driving considerable distances to transport their child to school because there is not a suitable school locally.
They are reimbursed for the cost of petrol, but not for the wear and tear on their car and not for the hours each week they spend transporting their child. Many have to give up work. Far from ‘being paid’, families are absorbing the cost of a system that does not meet their child’s needs.
Anna Bird added:
“Many children have care needs through the night and cannot be safely transported to school on public transport. Families with disabled children would love nothing more than to wave their child off for the school day, to catch the bus or walk with friends, but this is not their reality.”
The government has announced a £50 million cash injection for Disabled Facilities Grants (DFG) in England this financial year. They say it could support 5,000 more children and adults with disabilities who need home adaptations. An adaptation is a change made to your home to make it more accessible and safer for a disabled child or adult. The money will be paid to local authorities in February boosting this year’s allocation of money to the DFG pot.
Contact regularly hears from families who need adaptations to make caring for their disabled child at home easier. Whether that’s building an accessible bathroom or creating a quiet space, or installing ceiling track hoists.
Unsuitable accommodation
Una Summerson, Head of Campaigns at Contact, said: “We welcome this additional money for Disabled Facilities Grants. Many families with disabled children live in unsuitable accommodation and need housing adaptations. This makes caring much harder and sometimes dangerous. There are often long waits to get assessed for a Disabled Facilities Grant. While the average DFG is £10,000, some projects cost more. We’ve heard from families asked to pay towards the adaptations while others need to negotiate that the council and housing association split the cost.
“The extra money announced at the weekend will go some way to help families who need adaptations to to enable them to care for their disabled child more easily and safely. We would also like to see an increase in the upper limit of the DFG to reflect higher building costs and local authorities should promote the grants more widely. In addition, it’s important to address the shortage of Occupational Therapists who are needed to carry out the assessments.”
More than a quarter (27%) of all families are not aware of the Disabled Facilities Grant, available from the council to help pay for building works, ramps, hoists.
Only 12% have applied for a Disabled Facilities Grant. Of the families who did apply, 43% found the process poor or very poor. Over half (57%) said the grant did not cover the full cost of the adaptations needed.
The average shortfall was £7,391. To find that money, a third (35%) had to borrow or take a loan. 30% used their savings, but more than a quarter (26%) had to do without or scale down the adaptations they really needed.
The review is expected to take three to six months and inform implementation of the new NHS Long Term Plan. Separate chapters for children and adults will look at:
Similarities and differences between mental health conditions, ADHD and autism regarding prevalence, drivers, early intervention, and treatment.
Co-occurrence of these conditions.
Inequalities in prevalence, access, and experience.
Challenges facing clinical services.
Extent to which diagnosis, ‘medicalisation’ and treatment improve outcomes.
Differences between the levels of need and disorder for mental health conditions, ADHD, and autism.
Role of medicalisation of mental health conditions, ADHD, and autism, including the associated risks and benefits.
Effectiveness of short versus long-term interventions to support recovery and/or improve quality of life.
Contact is concerned this it is happening at a time when there is a growing narrative that children who are neurodivergent or have mental health conditions, are being ‘overdiagnosed’. Contact is urging the government to use the review to build trust with families, not undermine it.
Very real needs
Contact CEO Anna Bird said:
“The independent review must not be used to cast doubt on the very real needs of children with ADHD and autism. Rising demand is not a sign of ‘over‑diagnosis’; it is a sign that we have got better at recognising the signs, which is something to be celebrated. It’s also an indication that many children have gone without support for too long.
“Every child has the right to be seen, heard, and supported. We urge decision‑makers to use this review to build trust with families, not undermine it, and to ensure that children get timely assessments and the help they need to thrive.”
ADHD taskforce review
Professor Peter Fonagy will chair the review team, co-led by Professor Gillian Baird and Professor Sir Simon Wessely. It will draw on the recent independent ADHD taskforce review which found unsupported ADHD costs economy around £17 billion a year because people with ADHD are at higher risk of unemployment, family breakdown, and mental health problems.
Contact’s UK-wide helpline will close at 2pm on Xmas Eve Wednesday 24 December and will re-open at 9.30am on Friday 2 January 2026.
If you need to speak to someone when our helpline is closed, the following national support organisations may be helpful:
Samaritans Freephone: 116 123 open 24 hours every day throughout the festive period
CALM Freephone: 0800 585858, open 5pm till midnight throughout the festive period
SHOUT Text: 85258, open 24 hours a day, confidential text support service.
If you ask a query during this period, we’ll respond as soon as we can after our office reopens on 2 January 2025. Whilst the helpline is closed, you can find lots of advice and support on our website. You can use Charlie the Chatbot, who lives on the bottom right-hand side of our website, to guide you through our information and advice quickly and easily, whenever you need it – 24 hours a day, 7 days a week.
Our Live Chat option on our website is not available from 2pm on 24 December to 4 January 2026 inclusive.
For families in Scotland
Contact’s Scotland enquiry service is closed from Thursday 18 December and reopen on Monday 5 January at 9.30am. While our service is closed the following organisations may be useful to you:
Scotland’s Domestic Abuse & Forced Marriage Helpline 0800 027 1234
More information including tips on looking after yourself this winter is available from Parent Club.
For families in Northern Ireland
Contact’s NI office will be closed for the winter holidays from Thursday 18 December and reopen on Monday 5 January at 9.30am.
Lifeline NI: 0808 808 8000 is available 24/7, 365 days a year, including Christmas Day.
For families in Wales
Our Wales office will be closed from Wednesday 24 December and reopen on Monday 5 January.
You can get in touch with Family Lives on 0808 800 2222 (Closed Christmas & Boxing Day, New Years Day) or visit their website.
Fareshare Cymru has a community food provisions map which helps you explore a wide range of alternative food provision across Wales. From community pantries and luncheon clubs to growing projects and food-sharing schemes, this tool makes it easy to find what’s happening near you.
The government has announced £3billion to increase the number of mainstream places for children with special educational needs in England. The money is intended to create 50,000 new places, many in resource centres or units attached to existing mainstream schools, so that more children with additional needs can attend a school closer to home.
The money is for capital spending, so is not for extra resources for teachers, teaching assistants and specialists.
Need for guidance
Anna Bird, CEO of Contact, said: “We welcome any investment that increases inclusion in and accessibility of schools. But that must be matched by enough teachers, teaching assistants and access to therapists in mainstream to make those buildings function well.
“Contact would like to see clear guidance for specialist units to ensure they are appropriately funded, staffed and founded on the principle of inclusion. They should respect and protect every child’s right to a mainstream education, while 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, segregating pupils with SEN.”
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.
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 Sayce review found that large numbers of carers were left facing huge overpayments because of the Department for Work and Pension’s (DWPs) own failures. This has had a very profound impact on many families, causing widespread financial and emotional distress.
The report, commissioned by the Secretary of State for Work and Pensions, confirms that in very many cases, overpayments were caused not by any failure on the part of individual carers. Rather, DWP’s own systems caused problems.
The complexity and inconsistency in the DWP’s own rules for calculating earnings left many claimants in a situation where they may have known there was an earnings limit, but had no way of identifying whether they were exceeding it or what exactly they needed to report. Flawed guidance on averaging earnings only made problem worse. So did systemic delays in the DWP acting on information provided by HMRC about individual carers earnings.
The Sayce review findings reflect Contact’s own research. We found that of those we surveyed getting Carer’s Allowance, 1 in 10 had been overpaid. On average they had to repay the benefits office £1,045. A quarter of families told us they had contacted the Carer’s Allowance unit about changes in their wages, but the information wasn’t updated in time. Half of families with a disabled child who had had to pay back Carer’s Allowance told us they stopped claiming the benefit as a result. This is despite Carer’s Allowance being a vital source of income for carers under enormous physical, emotional and financial pressure.
Government commits to reassessment exercise
This government has committed to carrying out “a reassessment exercise”. This will look again at Carer’s Allowance overpayments caused by averaging of earnings between 2015 and 2025.
Where an overpayment decision resulted from flawed DWP guidance, it will reduce the amount of that carer’s overpayment accordingly. It will also pay back any overpayments it should not have pursued in the first place.
This reassessment exercise won’t start until 2026, and the government will provide more detailed information in the New Year. However, it has already made clear that it will only re-examine overpayments linked to averaging of earnings, and not other issues such as the treatment of expenses.
Government to implement majority of report’s recommendations
The government has also said that it will implement the vast majority of recommendations in the independent review. In addition to the reassessment exercise, this will include:
Changing the rules used to calculate a carer’s average earnings. The government says that internal DWP internal guidance has already been amended to improve consistency and clarity in the rules and to ensure that they better reflect modern working patterns. However, it will also consider the need for changes to the averaging regulations themselves.
Simplify allowable expenses. The DWP will review decision letters to ensure claimants better understand which expenses they can deduct from their earnings.
Address the earnings cliff edge whereby someone loses all of their Carer’s Allowance if they go over the earnings limit by just 1p. The government has said that it will look at the possibility of introducing a taper. This would mean the amount of Carer’s Allowance paid is reduced gradually as earnings increase. However, it warns that such a change would be ‘several years away’.
Smooth interactions between Carer’s Allowance and Universal Credit. The government accepts that where a carer gets both Carer’s Allowance and Universal Credit, any Carer’s Allowance overpayment should be offset against Universal Credit arrears. However, this change is not likely to begin until 2027/2028 at the earliest.
Use data more effectively. The DWP says that it will clear backlogs in acting on earnings alerts from HMRC, respond to 100% of alerts, and act on alerts much more quickly.
Improve DWP processes and communications. The DWP has committed to improving communications with carers, including letters and gov.uk guidance. Existing online services for carers are also to be improved.
Reform enforcement actions. The government partially accepts the recommendation that no one should be issued with a civil penalty for not telling one part of the DWP when they have already told another part.
Improve debt managementfor carer’s allowance overpayments taking more account of hardship and vulnerability.
Rebuild trust by appointing a senior responsible owner within the DWP.However, it has rejected the need to commission an operational audit.
We urge the government to move fast
Anna Bird, Chief Executive at Contact, said:
“We welcome this comprehensive review recognising the harm that has been caused to carers up and down the country from the fundamentally flawed Carers’ Allowance overpayment system. And we welcome the government’s commitment to implementing the vast majority of the review’s recommendations to improve it.
“We urge the government to move fast to look at the tapering of the earnings limit. This would make a huge difference to the parents we support juggling work and caring responsibilities.”
Looking for more information about Carers Allowance?
If you care for a child with a rare condition, come along to our free online event on 11 November!
Our Rare Voices Together online conference is a rare opportunity for you to meet and share experiences with other parent carers and to hear rare condition support groups and other experts in rare conditions.
Martina Rodie from the Office for Rare Conditions in Glasgow. Martina will talk about the work they do providing information and support to individuals and families affected by rare and undiagnosed conditions and how they empower them by supporting their ability to take an active role in their health and well-being.
Joanna Holmes who is a full-time parent carer for her daughter who has Emanuel Syndrome and a trainer and Partnership Development Officer for support group, Born at the Right Time.
Pete Richardson managing director at support group, Fragile X Society. Fragile X is a genetic condition, affecting around 1 in 4000 males and 1 in 6000 females. It is the most common inherited cause of learning disability.
Natalie Frankish from the Genetic Alliance. Genetic Alliance is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK.
Attendees will also have the opportunity to hear from Contact’s campaigns team and find out more about our Change Makers – a community of parent carers banding together to get their voices heard and make a difference.
Contact’s work supporting rare families
Contact has always worked with families with rare conditions, bringing them together, providing advice and support, and highlighting the unique challenges they face.
Visit our rare conditions page for information on getting support for your child and your family.
Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.
Contact’s Rare Conditions Network
Thanks to funding from Pears Foundation, we created the Rare Conditions Network and resources to support the charities who are part of our Rare Group Network. Our Rare Conditions Network toolkit includes advice on managing volunteers, guidance on using social media, and our group action pack.
The Department for Education has confirmed a delay to the publication of the Schools White Paper for England, which is now expected early next year, to allow for a further period of co-creation with families, educators, and experts.
The government emphasised the need to take time to ‘get it right’ and ensure reforms are shaped by those with lived experience of the SEND system in England.
Responding to the announcement Contact’s CEO, Anna Bird said:
“While further delays to the publication of the White Paper and SEND reform plans will be disappointing news to many parent carers we support, it’s great to hear the government is committed to co-creating its reforms with parents and young people.
“Meaningful engagement with parents, children and young people is the key to doing just that. Contact looks forward to helping the government hear what parent carers want and need as they work towards the publication of the White Paper.”
The government says it remains committed to long-term SEND reform and to strengthen accountability for inclusion.
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.
Contact’s Ellie and Kate will be heading to Liverpool this December and would love to meet you at the free Kidz to Adultz Exhibition at ACC Liverpool on Wednesday 3 December.
If you’re a parent of a child or young person with disabilities or additional needs and live in the North West of England or North Wales – this is one event you won’t want to miss.
As well as getting advice and information from Contact, you’ll be able to visit over 100 exhibitors at Kidz to Adultz North this December and explore the very latest in mobility and seating equipment, education, sensory products and much more.
Ellie from Contact says: “We were at one of Kidz to Adultz events earlier this year. It was fantastic to meet so many parents who enjoyed dedicated exhibitors, information about support services and the many fun family activities throughout the day.
“If you are able to get to Liverpool, please drop in to find out more about how Contact can help support your family or just to say hello and have a chat. We’d love to see you there!”
Plenty for the whole family to enjoy
This event isn’t just informative – it’s also fun and festive for all ages! Come along and you can also:
Visit Santa’s Grotto – a magical moment your child won’t forget
Let of some steam in the soft play zone perfect for younger visitors
Win Amazing Prizes by entering exclusive competitions with exciting prizes
A focus on moving onto adulthood
This year, there’s a special focus on helping young disabled people and their families navigate the transition to adulthood including preparing for adulthood, accessing further education, moving into employment or gaining greater independence. Families will be able to explore dedicated information and services to help make these transitions smoother and more informed.
Book your free place at the event taking place at King’s Dock, Port of Liverpool, Kings Dock St, Liverpool L3 4FP.
Don’t live near Liverpool?
All Kidz to Adultz exhibitions happening this year are completely free for families to attend.
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.
From information fairs and conferences to carer events, there’s plenty happening across Scotland this autumn for families with disabled and additional needs children. The Contact Scotland team will be at the following events and venues over the next couple of months – stop by for a chat and a friendly welcome wherever you see our stand!
Stanmore House School Family Support and Resource Fair, Lanark
Wednesday 24 September, 9:45am – 2pm at Stanmore House School, Stanmore Road, Lanark, ML11 7RR. Free transport from Lanark train station.
This free drop-in event is open to all families with disabled or complex needs children, whether or not they attend the school.
Look out for our Contact information stand, where our team will be ready to help and share support. Joining us will be lots of other local and national organisations who can offer advice and information on a range of topics relating to disabilities and additional needs.
It’s also a great chance to have a look around Stanmore House School, which provides education for children with complex needs and accepts applications from other local authorities out of the area.
By Your Side is our hospital-based service for families of disabled or ASN children and young people up to the age of 25 (with or without a diagnosis). Whether your child is staying in hospital or you’re there for appointments, we can provide information, guidance and a listening ear. We’re also here for hospital staff too.
Come and find us in the main atrium from 10am – 2pm on the following dates:
University Hospital Wishaw on Tuesday 28 October and Tuesday 25 November.
Queen Elizabeth University Hospital, Glasgow on Tuesday 21 October, Tuesday 11 November, Tuesday 9th December.
Transitions Information Evening, West Lothian
Thursday 16 October, 6–8pm at Howden Park Centre (doors open from 5.45pm).
The Contact Scotland team will also be part of this fantastic event, bringing together different services and organisations under one roof.
The event is being organised by Carers of West Lothian for parents of young people with additional support needs (aged 14–18). From grassroots volunteer groups to formal care agencies, colleges, and social work, it’s a great way to find out about the support and services available as a young person approaches adulthood.
Parents are welcome to bring their young person along too! There is step free access as well as a quiet space for those who need it.
Cerebral Palsy Scotland Conference and Exhibition 2025
Crowne Plaza Glasgow, Wednesday 8 October.
The 12th annual Cerebral Palsy Scotland Conference and Exhibition is free to attend. Scotland’s only annual event focusing on cerebral palsy, it’s open to anyone with experience of cerebral palsy – whether directly, as a family member, or professionally – and is a great opportunity to connect, share information, and learn from others in the community.
Have you ever wished you could speak directly to those in charge about the challenges of being a carer? The Carers Parliament 2025 gives carers the opportunity to share experiences and put questions directly to national and local Government decision-makers. And best of all, you don’t need to leave your home to do it!
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