Despite headlines in the press, the review found that there is no overdiagnosis of these conditions. Instead, it found that the system is overwhelmed and this is impacting children and young people negatively. It calls for a different approach, with support available earlier rather than families having to wait for a formal diagnosis before getting help.
Support before diagnosis is crucial
Contact’s CEO, Anna Bird says:
“We hope that this review will remove questions about the very real needs of children with ADHD, autism and mental health conditions. Rising demand is not a sign of “overdiagnosis”. It is a sign that many children and young people have gone without support for too long.
“At Contact, we see the impact that waiting for a child’s ADHD, autism or mental health assessment can have on the whole family. Contact’s Ealing team has been doing pioneering work to support parents of children aged 0–18 who are waiting for a neurodevelopmental disorder (NDD) assessment. The service helps parents access support and advice while they wait, sometimes up to three years, during what can be an isolating and difficult time.
“97% of families supported by our service reported that it helped them support their child better, improved family dynamics and their own wellbeing.”
Prevalence of autism, ADHD and mental health conditions
The review found a significant rise in the number of young people with anxiety and depression. It says this is due to social media and financial instability.
The system is catching up with historically low rates of diagnosis for autism, particularly in girls. And more awareness of autism and ADHD has led to people seeking answers and assessment.
Unregulated private providers
The review also found that families are turning to unregulated private providers for diagnosis. This is due to NHS delays and because it is often the only guaranteed way to unlock support in schools and care.
The review calls for national standards to be applied across the sector.
They have said that this will set out a renewed focus on prevention and early intervention, to make sure that people receive the right help, at the right time, in the right place, based on their needs.
If you care for a child with a rare condition or you represent a rare condition support group, please come along to our free online event in November:
The reality of rare: caring for your child, looking after yourself on Thursday 12 November, 10am -12:30pm.
Caring for a child with a rare condition can bring unique challenges – from navigating services to supporting your child’s mental health and wellbeing, while remembering to look after yourself too. That’s why this year’s online conference will focus on the importance of family wellbeing.
• Looking after your own wellbeing as a parent carer
• There will also be an opportunity to help develop Contact’s Rare Conditions guide and shape our future resources for families.
And if you help run a rare condition support group it will also a great opportunity to connect with other support groups and learn about new resources you can share with your 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.
Over the next few weeks, Contact will be looking again at the Schools White Paper proposals and breaking down the details.
Although the consultation ended in May, there is still debate and discussion about what the reforms will look like when the government publishes its response at the end of the year.
Contact continues to feed into decision-makers the day-to-day realities for families we hear on our helpline and directly from you. This includes concerns about the possible loss of legal protections currently provided through Education, Health and Care (EHC) Plans; reduced access to the SEND Tribunal; and fears that the proposed reforms could weaken children’s rights rather than strengthen support.
We are starting with the role of the SEND Tribunal, how the proposals would change its powers and what this could mean for children, young people and their families.
In the coming weeks we will also look at Individual Support Plans (ISPs), Education, Health and Care Plans, Specialist Provision Packages and Accountability.
It’s important to remember that these are just proposals and nothing has changed. If you are told your child’s EHC plan rights have changed because of the government’s proposals or the Schools White Paper, that is not correct.
The SEND Tribunal
The SEND Tribunal is an independent legal body that decides on disagreements between parents and local authorities regarding support for children with special educational needs.
It enables families to challenge decisions and make sure their legal rights can be put into practice.
In 2024/25 approximately 25,000 SEND tribunal appeals were registered. with parents winning 99% of cases. The tribunal is the final backstop that ensures accountability, making rights enforceable and implementable.
Currently, the SEND Tribunal has the power to order local authorities to make legally binding changes to an Education Health and Care Plan. It can require a plan to include specific support that meets a child or young person’s individual needs, such as the number of hours of physiotherapy or speech and language therapy required. It can also make non-binding recommendations about health and social care.
Contact is concerned that reducing the Tribunal’s powers could limit this important safeguard at a time when many families already find the SEND system difficult to navigate.
Under the Schools White paper proposals when would families still be able to appeal to the SEND Tribunal?
A local authority refuses to carry out a needs assessment.
A local authority decides that a child no longer requires a SPP and that their EHCP should cease.
There is disagreement about what SPP a child requires.
Under the Schools White Paper proposals how would the Tribunal’s powers change?
The Tribunal will no longer be able to make legally binding amendments to a child or young person’s EHCP. Instead, it will have the power to decide the type of Specialist Provision Package (SPP) a child receives.
The Tribunal will no longer have the power to name a school, college or educational setting for a child or young person as it does currently (sometimes called placement decisions). Instead, the Tribunal would only be able to overturn the original decision and order the local authority to reconsider the placement.
The wider proposals would reduce how often EHCPs are reviewed (called an annual review). Instead of being reviewed annually, the plan is for EHCPs to be reviewed at key stage transitions. The completion of Annual Reviews act as a trigger for a right of appeal. If reviews happen less often, there may also be fewer opportunities for families to challenge decisions about their child’s EHCP.
Risks and unintended consequences of proposals
With less individual support outlined in an EHCP there is a risk that more children will have support that is not suitable, leading to a reduction in equal opportunities.
The removal of the SEND Tribunal’s power to name a school or college, could lead to an increase in the number of children without a suitable school place.
What Contact is calling for
We want less parents to have to use the SEND Tribunal, which is an onerous and stressful process, and we want an easier route for children and young people to get the right, individual support they need. We believe this could be achieved by stronger enforceability of Independent Support Plans (ISPs).
However, the SEND Tribunal must remain as a backstop for when things go wrong. Families need a clear, effective, and independent way to challenge decisions when the support being offered does not meet their child or young person’s needs.
In addition, we are calling for the SEND Tribunal to have the power to issue legally binding decisions on health and social care as well as education.
What happens next?
It’s important to remember that these are just proposals and nothing has changed. If you are told your child’s EHC plan rights have changed because of the government’s proposals or the Schools White Paper, that is not correct.
Whatever is proposed will need to go through Parliament. Nothing changes during that process.
By Your Side is Contact’s hospital-based service for families of children with a disability or additional need up to the age of 25, with or without a diagnosis.
Whether your child is staying in hospital or attending an appointment, our By Your Side Advisers can provide practical information and guidance and help you find support and services. They can also offer a listening ear during what can be a very difficult time. Our service is also available to hospital staff supporting families.
Queen Elizabeth University Hospital, Glasgow
Come and find Contact’s By Your Side team in the hospital on:
Thursday 24 September, 10am–2pm
Thursday 15 October, 10am–2pm
Thursday 12 November -10am – 2pm
Look out for the Contact stand by the main entrance of the children’s hospital to find our Advisers. There’s no need to make an appointment – just drop by for a chat anytime during the hours above.
University Hospital Wishaw, Lanarkshire
Come and find Contact’s By Your Side team in the hospital on:
Tuesday 29 September 10am-2pm
Tuesday 27 October, 10am–2pm
Tuesday 24 November, 10am–2pm
Again, there’s no need to book an appointment. Come and speak to our team at any time during the drop-in. You can find us in the main entrance – look out for our Contact information stand.
We are calling for EOTAS to remain a needs-led option for children and young people who cannot receive their education in a school or college, with families’ existing legal protections retained.
EOTAS can be a lifeline for children and young people with special educational needs and disabilities (SEND) whose needs cannot safely or effectively be met in a school, college or alternative provision setting.
One parent told us: “He is now settled, calm and emotionally secure. His anxiety has reduced significantly, he is no longer experiencing the daily distress that school caused, and he has been able to engage positively in learning because it is delivered at a pace and in a way that meets his individual needs.”
Contact supports the government’s aim of improving the consistency, quality and accountability of EOTAS.
What is Contact calling for?
EOTAS to remain a distinct, needs-led route. Children should continue to receive bespoke packages based on their individual educational, therapeutic and other needs.
Existing legal protections to be retained. Section 61 of the Children and Families Act should remain, with EOTAS provision specified, quantified and legally enforceable.
Local authorities to remain responsible. They should continue to be responsible for commissioning, funding and overseeing EOTAS rather than responsibility transferring to individual schools or colleges.
Families to retain their SEND Tribunal rights. Parents and young people need an accessible and enforceable way to challenge decisions to refuse, change or end EOTAS provision.
Personal budgets and direct payments to remain available.
Clearer coordination and accountability, including a named coordinator or key worker to help families navigate EOTAS arrangements.
Returning to school
The consultation asked a number of questions about children receiving EOTAS returning to school.
Contact believes returning to school should not be the automatic goal of EOTAS.
For some children, returning to school may be right. Where it is, Contact believes this should be carefully planned with the child and family, properly supported and happen at the child’s pace. There should be flexibility to pause or step back and continued access to elements of an EOTAS package during the transition where needed.
Contact believes families should retain an accessible and legally enforceable route to challenge decisions to refuse, change or end EOTAS. We do not want families to rely instead on routes such as complaints or judicial review, which can be more complex and less accessible.
What happens next?
The EOTAS consultation has now closed and the government will consider the responses it has received.
Contact will continue to engage with the Department for Education, ministers and parliamentarians as the proposals develop, making sure that the experiences of disabled children, young people and their families are heard.
For now, your child’s existing legal rights have not changed. If you are told that your child’s EOTAS or EHC plan rights have changed because of the government’s proposals or the Schools White Paper, that is not correct.
You can find more information about your current rights and the proposed changes on our website:
Earlier this month the Timms Review into Personal Independence Payment (PIP) set out ‘emerging recommendations’ it is considering for reforming PIP. These recommendations are not yet finalised but are to be explored in a series of workshops with disabled people and other participants in the coming weeks.
Positive
Some of the emerging recommendations will be welcomed. This includes proposals aimed at reducing unnecessary award reviews, improving the use of supporting evidence, ensuring fluctuating conditions are adequately captured and introducing an advocacy and support service for those who need additional help to claim.
Cause for concern
However, some of the other emerging recommendations are likely to cause concern. For example, while it is accepted that PIP will remain a non means-tested benefit with cash payments as it’s foundation, it’s also been suggested that some awards may include services, and other non-cash support.
Another recommendation is that cost categories including equipment and aids, mobility and transport, and clothing and bedding could be used to determine awards. This suggests that major changes in the PIP qualifying criteria are being considered, although little other detail of what these might look like have been provided by the Timms Review so far.
the role of non-cash support, and whether access to services could reduce any claimant’s cash award.
How the use of disability cost categories such as equipment, mobility, transport, clothing and bedding will capture and help assess the wider and less tangible disability costs faced by many disabled people.
The Work and Pensions committee also noted that the government had previously announced plans to replace the current work capability assessment used in Universal Credit with any new PIP assessment, but this has not been mentioned or discussed by the Timms Review. It has asked the Timms Review to clarify whether this is to be part of their current work or whether it will be looked at separately.
Contact will provide more information about these emerging recommendations as it become available.
Contact Cymru has a range of free workshops and events coming up this autumn for families of disabled children and young people in North Wales.
From practical support with your child’s sleep to wellbeing sessions and opportunities to meet organisations offering local support, there’s lots going on in Wrexham, Flintshire and Denbighshire.
If your child finds it difficult to fall asleep or stay asleep, join us for a free workshop looking at practical ways you can support them.
Led by Dr Marc Johnson of Clinical Wellness and the Contact Cymru team, the session will cover the anatomy of sleep, common sleep issues and possible causes, and practical strategies that could help. We’ll also look at nighttime routines and where to go for further support if your child’s sleep does not improve.
The workshop is for parents and carers in Wales of disabled or additional needs children and young people aged 0–25, with or without a diagnosis.
There will be time for individual questions, and we’ll provide warm drinks and a buffet for everyone attending.
We’re running a free outdoor wellbeing workshop with Woodland Classroom for dads and male carers of disabled or additional needs children and young people who live in or around the Wrexham and Flintshire area.
You’ll spend time outdoors taking part in simple, relaxing activities designed to support wellbeing, with an opportunity to meet other dads and male carers in a friendly environment. You don’t need any previous experience, skills or equipment.
Food and hot drinks will be provided and toilets are available on site.
Our free Building Resilience programme gives parent carers the chance to take some time to focus on themselves, meet other parents and develop practical life skills.
Across eight sessions, we’ll explore subjects including managing stress, confidence and self-esteem, time management, setting goals, communication skills and motivation.
The programme is for parents and carers in Wales of disabled or additional needs children and young people aged 0–25, with or without a diagnosis. We ask that participants attend all eight sessions, and you’ll receive a certificate when you complete the programme.
Lunch and hot drinks will be provided at the sessions.
Stronger Futures Information Fairs in Rhyl and Wrexham
Stronger Futures supports parent carers of disabled and additional needs children and young people (up to age 25) in Wrexham and Denbighshire, through 1-1 and group support.
In October, we’re organising two free information fairs in Wrexham and Rhyl, where we’ll be joined by other local services and organisations who support parent carers. It’s an opportunity to speak to a range of organisations all under one roof and find out what support is available for you and your family.
Gweithdai a digwyddiadau am ddim i rieni sy’n ofalwyr yng Ngogledd Cymru yr hydref hwn
Mae gan Contact Cymru amrywiaeth o weithdai a digwyddiadau am ddim ar y gweill yr hydref hwn ar gyfer teuluoedd plant a phobl ifanc anabl yng Ngogledd Cymru.
O gymorth ymarferol gyda chwsg eich plentyn i sesiynau lles a chyfleoedd i gwrdd â sefydliadau sy’n cynnig cymorth lleol, mae llawer yn digwydd yn Wrecsam, Sir y Fflint a Sir Ddinbych.
Cefnogi cwsg eich plentyn (Wrecsam)
Dydd Iau 24 Medi, 1pm–3pm Hwb Lles Wrecsam
Os yw’ch plentyn yn ei chael hi’n anodd mynd i gysgu neu aros ynghwsg, dewch i’n gweithdy am ddim i edrych ar ffyrdd ymarferol y gallwch ei gefnogi.
Dan arweiniad Dr Marc Johnson o Clinical Wellness a thîm Contact Cymru, bydd y sesiwn yn edrych ar anatomeg cwsg, problemau cysgu cyffredin a’u hachosion posibl, a strategaethau ymarferol a allai helpu. Byddwn hefyd yn edrych ar arferion gyda’r nos a ble i fynd am gymorth pellach os nad yw cwsg eich plentyn yn gwella.
Mae’r gweithdy ar gyfer rhieni sy’n ofalwyr yng Nghymru sydd â phlant a phobl ifanc anabl neu sydd ag anghenion ychwanegol, rhwng 0 a 25 oed, gyda diagnosis neu hebddo.
Bydd amser i ofyn cwestiynau unigol, a byddwn yn darparu diodydd poeth a bwffe i bawb sy’n mynychu.
Lles ym myd natur i dadau a gofalwyr gwrywaidd (Sir y Fflint)
Dydd Sadwrn 10 Hydref, 11am–2pm Woodland Classroom, Yr Hob, Sir y Fflint
Rydym yn cynnal gweithdy lles awyr agored am ddim gyda Woodland Classroom ar gyfer tadau a gofalwyr gwrywaidd plant a phobl ifanc anabl neu sydd ag anghenion ychwanegol sy’n byw yn ardal Wrecsam a Sir y Fflint neu’r cyffiniau.
Byddwch yn treulio amser yn yr awyr agored yn cymryd rhan mewn gweithgareddau syml ac ymlaciol sydd wedi’u cynllunio i gefnogi lles, gyda chyfle i gwrdd â thadau a gofalwyr gwrywaidd eraill mewn awyrgylch cyfeillgar. Nid oes angen unrhyw brofiad, sgiliau nac offer blaenorol.
Bydd bwyd a diodydd poeth yn cael eu darparu ac mae toiledau ar gael ar y safle.
Yn dechrau ddydd Iau 15 Hydref, 12pm–2pm, gydag 8 sesiwn wythnosol Hwb Lles Wrecsam
Mae ein rhaglen Meithrin Gwydnwch am ddim yn rhoi cyfle i rieni sy’n ofalwyr gymryd peth amser i ganolbwyntio arnyn nhw eu hunain, cwrdd â rhieni eraill a datblygu sgiliau bywyd ymarferol.
Dros wyth sesiwn, byddwn yn edrych ar bynciau gan gynnwys rheoli straen, hyder a hunan-barch, rheoli amser, gosod nodau, sgiliau cyfathrebu a chymhelliant.
Mae’r rhaglen ar gyfer rhieni sy’n ofalwyr yng Nghymru sydd â phlant a phobl ifanc anabl neu sydd ag anghenion ychwanegol, rhwng 0 a 25 oed, gyda diagnosis neu hebddo. Gofynnwn i gyfranogwyr fynychu pob un o’r wyth sesiwn, a byddwch yn derbyn tystysgrif ar ôl cwblhau’r rhaglen.
Ffeiriau Gwybodaeth Dyfodol Cryfach yn y Rhyl a Wrecsam
Mae Dyfodol Cryfach yn cefnogi rhieni sy’n ofalwyr plant a phobl ifanc anabl neu sydd ag anghenion ychwanegol (hyd at 25 oed) yn Wrecsam a Sir Ddinbych, drwy gymorth un-i-un a chymorth grŵp.
Ym mis Hydref, rydym yn trefnu dwy ffair wybodaeth am ddim yn Wrecsam a’r Rhyl, lle bydd gwasanaethau a sefydliadau lleol eraill sy’n cefnogi rhieni sy’n ofalwyr yn ymuno â ni. Mae’n gyfle i siarad ag amrywiaeth o sefydliadau i gyd o dan yr un to a chael gwybod pa gymorth sydd ar gael i chi a’ch teulu.
Dydd Mawrth 6 Hydref, 10am–1pm Canolfan ASK, y Rhyl
Fancy a magical woodland adventure with the family – and a chance to make your voice heard?
Contact is inviting parent carers and their children to Middleton Park in Leeds this September to enjoy outdoor theatre, explore nature, meet other families and discover practical ways to influence the decisions that affect them.
Both of our woodland events have been created with SEND families in mind and are designed to be relaxed, welcoming and flexible. There’s no expectation for children to sit quietly or participate in a particular way. They can make noise, move around, take a break or explore the woods – they can join in in whatever way works for them.
Saturday 26 September, 130-330pm: A magical woodland adventure
Join us for an interactive outdoor theatre experience designed to spark curiosity, connect families with nature and have fun together.
Sunday 27 September from 1030am: Have your say and make a difference
While your children enjoy woodland crafts, play and nature activities, you can learn practical ways to engage with politicians and campaign for change on the issues that matter to your family. Led by Hope for the Future, this Woodland Workshop will give you practical tools and ideas to help get your voice heard – including on SEND issues and the challenges facing families in your local community.
Both events take place in Middleton Park in Leeds. Leeds Parent Carer Forum will be also be there to support families too.
Contact has joined forces with Hope for the Future, and arts education group REA, to run these events which have been designed with accessibility in mind, including an accessible toilet nearby, a quiet space and ear protectors. Whether your child is already receiving SEND support, you’re waiting for an assessment, or you simply want to meet other families and find out more about getting your voice heard, you’re very welcome.
It’s just 2 months to go until the government must respond to recommendations to improve outdated social care law for disabled children.
Families caring for disabled children are routinely left without essential support in the home, short breaks and direct payments. Instead, they are pushed into crisis and subjected to unnecessary and unwarranted safeguarding investigations.
Huge thanks to the 650 of you who have already taken action.
Why act now?
This is a rare opportunity to make meaningful change in a decades-long overlooked area. We need MPs to support the Law Commission proposals to create a fairer, more modern and workable social care system of support for disabled children.
Una Summerson, Contact’s Head of Policy and Campaigns, said: “We hear daily from families with disabled children failed by the current social care system.
“However, there is little awareness amongst MPs and policy makers about the importance of good social care support. We now have two months to create greater understanding of the importance of social care support.
“Without law change, disabled children will continue to face a postcode lottery of support. This leads to more pressure on schools and teachers who are left to pick up the pieces when a child and family aren’t supported outside the classroom. It also creates more pressure on the NHS as physical and mental health conditions worsen without support and respite and more pressure on the benefits system as families without adequate support struggle to maintain work and caring responsibilities.”
Take action
Write to your MP today to improve disabled children’s social care law and create a better system of support.
If you would be willing to share your story in the media, get in touch [email protected] or telephone 07599 930 090.
Inclusion bases are part of the government’s special educational needs and disabilities (SEND) reforms. The government is introducing them while it reviews feedback to its consultation on other proposed legal changes. The government wants every secondary school to have an inclusion base by 2030.
Families who contact our helpline tell us that experiences of inclusion bases vary widely. Some children thrive with the extra support, while others feel separated from their peers or insufficiently supported and need a special school.
The government has said it will publish parent‑friendly factsheets soon. We will share these as soon as they are available.
What are inclusion bases?
“Inclusion base” is a broad term covering different types of support spaces in mainstream schools. These include what many families already know as resource bases, specialist units or SEND hubs.
Bases are usually located away from the main classroom. They offer quieter or sensory‑friendly spaces, small‑group teaching, specialist support, and help with regulation, communication or confidence. The aim is to help children stay included in mainstream education while getting the support they need.
What the guidance says
There are two types of inclusion bases.
Support bases (school‑funded) are mainly for children who do not have an education, health and care (EHC) plan, but need more help than the classroom can provide. Under the SEND reforms, this sits within the Targeted Plus level of support.
Support bases should help children spend more time in mainstream lessons, be part of the whole school, be led by specialist teachers, and never be used as disciplinary spaces. They can range from small hubs to separate classroom‑style spaces.
Specialist bases (local authority‑funded) are for children who need more specialist teaching and support, usually those with an EHC plan.
Local authorities must:
Identify the group of children the base will support (for example autism, social, emotional mental health needs, or speech and language needs).
Commission any therapeutic input.
Involve families, schools, health and social care in designing and reviewing the base.
Academies that want to open a specialist base must involve the Secretary of State for Education. For less common needs such as physical disabilities or hearing impairment, commissioning may need to happen across a wider region.
The guidance also notes that some children without an EHC plan may be able to access specialist bases in certain circumstances.
A “spectrum of support”
The guidance says inclusion bases should support children who are mostly in mainstream but need occasional help, alongside children who need to spend more time in the base.
Schools must identify the main group of children the base is designed for. For example, children with speech and language needs, sensory needs, or social and emotional needs.
Concerns families have raised
Parents tell us that inclusion bases can work well when they are properly funded, well-staffed, clearly designed around a specific group of children, and genuinely focused on inclusion.
But families also raise concerns. Based on what we hear, and what the guidance says, we are watching for:
Children who do not fit the chosen “cohort”. It is unclear how schools will support children whose needs fall outside the base’s focus
Funding and accountability. Without clear rules, there is a risk bases will not have the staffing or resources they need.
How different types of bases work together. The guidance does not fully explain whether schools can run both support bases and specialist bases, or how or if they should be combined.
Variability between schools. Because the guidance is non‑statutory, provision may look very different from one school to another.
Contact continues to call on the government to make sure inclusion bases are properly funded, staffed and designed with families, so they promote genuine inclusion rather than segregation.
The Department for Education (DfE) is now reviewing the responses submitted to the consultation before publishing its formal response later this year.
The response will set out the feedback received and which proposals the government intends to change, take forward or develop further. Further policy development and engagement will continue over this period.
It follows feedback from families, charities and campaign groups that it was missing from the government’s Schools White Paper, despite it being a lifeline for many children and young people with special educational needs.
There are 16,000 children and young people with an EOTAS package. Over a third have a mental health condition and over a third are autistic. Children who cannot be educated in a school setting are often experiencing burnout and trauma.
We are concerned that the current proposals risk reducing legal rights to an EOTAS package. We are keen that families whose children have EOTAS to share their views.
Only way he can learn
One parent explained why EOTAS is so vital for her son: “Our son is a bright and wonderful boy that cannot attend school. We have tried every option for him and now the only way he can learn is at home, with an EOTAS package. He was initially home educated until we tried school aged 6. This was very distressing for him and triggered obsessive compulsive disorder (OCD) and extreme anxiety. We returned to home education, and he was diagnosed with Autism and ADHD. He was seen by Child and Adolescent Mental Health Service (CAMHS) aged 10. CAMHS supported us to get him a very specialist setting aged 11. The battle to get the placement with the local authority, broke us as parents, but we knew it was his only chance of a school education. Sadly, after two years his mental health rapidly declined. He was so severely unwell it became clear he could no longer attend any school. It took me over 6 months to produce the evidence he needed for a bespoke EOTAS package for his GCSE years. From September he will have 15 hours of online tutoring, and 4 hours of mentoring. EOTAS is the only way our son can have the safety of home, whilst receiving the education he needs to have a chance at a future.”
Local authority remains legally responsible
EOTAS is a formal special education package provided under an Education Health and Care Plan (EHCP). The local authority remains legally responsible for maintaining this package. Under this arrangement, the child or young person is not on roll at a school or post-16 institution. Instead, they receive their education and special educational provision either at home or, in some cases, within an external setting that is not registered as an educational setting.
Many of you will have seen the deeply troubling allegations reported by ITV News last week. A whistleblower described practices within a local authority that allegedly delayed or obstructed children and young people with SEND from accessing the support they need.
These allegations must be fully and independently investigated. They echo concerns that families share with us every day on our helpline and in our community services about lengthy delays, inconsistent decision-making and continuous battles to secure the support their children are legally entitled to.
Local authorities must ensure their decision-making is transparent, lawful and centred on the needs and rights of children and young people. These allegations also reinforce why the planned SEND reforms will only work if they strengthen and not weaken support, accountability and families confidence in the system. Families deserve a system they can trust – one that works with them, not against them.
If you need advice about routes to challenge local authority decisions, including complaints and lodging appeals to the SEND Tribunal, please call our helpline on 0808 808 3555.
When your child is in hospital, life can feel overwhelming and stressful. There are appointments to keep track of, unfamiliar medical language to understand and important decisions to make – all while trying to be there for your child. That’s why Contact’s By Your Sideteam is there. Our parent carer advisors offer a friendly face, practical advice and emotional support, helping parents with children in hospital find the support and answers they need at one of the most stressful times of their lives.
This year, we’re celebrating an important milestone – 10 years of support from legal firm Bolt Burdon Kemp (BBK). Their decade long partnership has helped make By Your Side a trusted source of support for families at Great Ormond Street Hospital and Evelina Children’s Hospital in London.
Support when – and where – it matters most
Having By Your Side advisers based in hospital means families can access free information and support when they need it, without having to book an appointment. Whether parents have questions about benefits, education, emotional wellbeing or simply need someone to listen, Contact’s By Your Side team are there to help them navigate the challenges of caring for a disabled or seriously ill child.
Ruth Stone from our London team of By Your Side advisers said:
“When a child is in hospital, parents can often feel overwhelmed and unsure where to turn. Thanks to BBK’s incredible support over the past 10 years, our By Your Side team has been there to offer practical guidance, reassurance and a listening ear when families need it most. For families, that can be life-changing. Having someone who understands what they’re going through, can explain their options and point them towards the right support helps parents feel more informed, more confident and less alone. It has helped us build a service that families can truly rely on.”
Over the last decade, BBK’s support has helped Contact:
Maintain a regular face-to-face presence at Great Ormond Street Hospital and Evelina Children’s Hospital.
Support hundreds of parent carers when they are with their child in hospital.
Build trusted relationships with families and hospital teams.
Provide consistent, high-quality support year after year.
More than a funding partner
BBK’s support has always been about more than funding.
Over the years, they have fundraised for Contact by taking on the London Marathon, shared their expertise through webinars, podcasts and blogs for parent carers, provided meeting and training spaces, and helped raise awareness of the challenges families face. This year, Maya Englesberg from BBK continued that tradition by running the London Marathon for Contact.
Caroline Klage, brain injury lawyer at legal firm BBK and parent carer, says:
“We’re incredibly proud to have supported Contact’s By Your Side service for the past decade. Seeing the difference it makes for families facing some of the toughest moments of their lives has made this partnership so meaningful for everyone at BBK. We believe long-term partnerships create lasting change, and we’re delighted to continue supporting Contact so that even more parent carers can access the information and support they need. We look forward to continuing to work together to help even more parent carers in the years ahead.”
Thank you BBK!
Thank you to everyone at BBK for standing by Contact and, most importantly, standing by the families who have benefited from By Your Side over the last 10 years.
Here’s to the next decade of making a difference together.
At a Westminster Hall debate on 4 June, MPs highlighted growing concerns about home-to-school transport for young people with special educational needs and disabilities (SEND), as well as the challenges facing families in rural areas.
Contact’s evidence highlighted in Parliament
In his opening remarks, Tom Gordon MP referenced evidence submitted by Contact to the Public Accounts Committee (PAC), saying:
“The charity Contact put it clearly in evidence to PAC (Public Affairs Committee): the policy is simply not working post 16. The change in entitlement can feel like a cliff edge. For families who have spent years building routines and supporting a young person with complex needs, that cliff edge can be devastating for the young person and for every member of their family around them.”
Transport barriers limit access to education
During the debate MPs shared examples of young people with SEND struggling to get to college because suitable transport was unavailable. MPs described the impact on families who are often forced to face difficult choices about employment, finances and their child’s education.
Concerns were raised about inconsistent local authority policies, lengthy appeal processes and personal transport budgets fail to reflect the true cost of travel. One MP referred to a local transport policy that made it “all but impossible” for SEND students to secure the transport support they need. There was broad agreement across the debate that transport is often the deciding factor in whether a young person with SEND can attend college, take up training opportunities and develop greater independence.
Additional challenges for rural families
MPs also highlighted the particular challenges families in rural areas face, where children and young people often have to travel long distances to reach a suitable school or college. Concerns were raised about the current transport eligibility rules based on attendance at the “nearest suitable” setting. MPs argued that this can leave families struggling when local provision cannot meet a child’s needs or when the nearest placement is many miles away from home.
Calls to review post 16 transport
MPs called on the Government to review post-16 transport arrangements and funding, and to strengthen national guidance for local authorities to ensure that young people with SEND can access education and training opportunities more consistently.
Thanks to funding from the Motability Foundation, Contact is campaigning to improve transport to school or college. Read more about our school transport campaign.
Contact’s head of campaigns, Una Summerson, was interviewed on BBC Radio 5 Live last week about new figures that show a sharp rise in school suspensions linked to racist, homophobic and disablist abuse.
Education specialists say the increase reflects wider pressures facing children and schools, including reduced anti-bullying support, the impact of social media, and rising tensions in society.
It is essential schools proactively challenge bullying
In her interview on the radio programme Una said:
“Our helpline hears first-hand from parents whose children are being bullied and the distress this causes. It can have a long-term impact on their child and the whole family, if for example a child can no longer go to school and has to be home educated or parents have to find another school.
“Sadly, some disabled children don’t feel safe or secure at school because they are being bullied. It’s really important that schools deal with all forms of bullying more effectively. Difference should never be a reason to be bullied at school – or in the wider community.
“Families tell us that they feel that there more general hostility and negative attitudes directed towards them. These will inevitably filter down into school playgrounds and communities. It’s essential that schools talk about difference and are proactively challenge bullying in school and disablist language.”
Research shows that disabled children are more likely to be bullied due to a lack of understanding of different disabilities and conditions, which might mean they might look or behave differently. And disabled children may be more isolated due to their disability.
Reporting bullying can be difficult for a disabled child who may not be able to communicate what has happened or may not even realise that they are being bullied. Parents know their child best and can recognise changes in behaviour. If you know or suspect bullying is taking place, it’s important to keep a record. Explain the impact on the child to the school and try to work together to put strategies in place to ensure the bullying stops and your child feels safe.
Since the Schools White paper for England was published, there’s been growing concern from parents about the proposals and about whether their voices are being heard in the consultation process. Contact has been speaking directly to parents about their concerns and insights. We will combine this parental feedback with the data we regularly gather from our dedicated helpline and online advice service on special educational needs and disabilities (SEND) to form our response to the consultation, which closes May 18th.
We encourage parents who have the time and energy to complete the consultation themselves, but we want to reassure those that don’t, we will represent your views in our response.
Focus Groups
In March, Contact held eight Focus Groups about the Schools White Paper. Each group consisted of between 5-10 parents with children aged 4 to 25 who have a special educational need or disability (SEND). In total we spoke to 49 parents in England.
Their children had a variety of special educational needs including autism, mental health condition, profound and multiple learning disabilities (PMLD), Down Syndrome, Foetal Alcohol Syndrome, rare genetic condition, degenerative condition, ADHD, as well as others.
Anna Bird, Chief Executive of Contact, said: “We are incredibly grateful to the parents who took part in our series of focus groups last month. Your insights, concerns and suggested solutions will form a large part of Contact’s response to the government’s Schools White paper consultation.
“We’ve heard very clearly from most parents that they don’t trust the consultation process, and they don’t think the proposed reforms will work as they stand. There is a shared view that these proposals will reduce children’s rights. Parents, charities and educators are all saying that would be a failure. We will be very clear about this in our consultation response.
“What we’re also hearing is that parents are feeling fatigued by the whole process: the timing of the white paper, the number of other reforms impacting disabled children and their families, and the concern around what is and isn’t up for consultation have left some parents disengaging from the process. Government needs to hear that and understand the risk that presents.”
Parents concerns:
The loss of legal rights and enforceability. Parents are worried that, unlike EHCPs, the new Individual Support Plans (ISPs) do not carry a statutory duty to deliver support.
The reduced role of the SEND Tribunal and increased reliance on school-based complaints procedures; many believe this will lead to damaging relationships between parents and schools.
The reforms do not address the school environment and the potential to make schools more welcoming. It was agreed that schools becoming less results-driven and more nurturing, with smaller class sizes, less strict behaviour and uniform policies and a greater focus on wellbeing and a more rounded curriculum, would be a reform that would have significant benefits.
The introduction of “Targeted” and “Targeted Plus” support doesn’t represent a significant change from the current system. There is not enough detail to demonstrate how this is anything other than a change in terminology.
Parents welcome:
The aims of improving consistency across areas, strengthening mainstream inclusion, and promoting earlier identification of needs.
Individual Support Plans (ISPs) if done correctly have the potential to provide more flexible and responsive support.
The push for greater multidisciplinary working.
A nationally standardised EHCP format could reduce regional variation and make plans clearer for families.
A system that differentiates those who have profound, life-long medical and learning needs.
A system that is more equitable and doesn’t rely on having the time, knowledge and means to go through a tribunal process.
We will be submitting the full Focus Group report to the Department for Education and the Education Select Committee.
Data from our helpline and online services
We are also using data from enquiries to our national helpline to inform our consultation response.
This provides additional valuable insight, directly from parent carers, who contact us for advice about their child’s education.
We have already been proactively sharing parent carers’ insights with key stakeholders including ministers at select committees and with Department for Education policy teams, as well as contributing to roundtable discussions and SEND-focused working groups. This ongoing engagement ensures that the lived experiences of families are reflected in wider policy development.
SENDAP Reform, Sanctuary Buildings, Great Smith Street, London, SW1P 3BT
The consultation closes on 11:59pm on18 May 2026.
After the consultation closes, any changes would still need to go through Parliament. Throughout that entire process, existing SEND law remains in place.
This advice applies in England only.
The SEND / schools white paper has a focus on improving outcomes for children and young people with special educational needs and disabilities (SEND). It highlights that, after they turn 16, young people with SEND are less likely to be in education, training or employment than their peers.
The proposals to address this set out in the white paper work alongside those already laid out in the post-16 education and skills white paper. Below, we explain what they are and what we think about them.
The publication of a white paper does not change existing SEND law. Your child’s legal rights to support remain in place.
What outcomes do the reforms aim to achieve?
The white paper’s broader proposals to provide an inclusive education, providing the right support when students need it, applies to all ages. Specialist further education (FE) colleges must deliver a stronger inclusive offer, alongside early years and school settings.
For young people, the proposals refer to:
Better transition planning from school to college into post-16 education and into adulthood.
Improving outcomes such as employment, training and apprenticeships and reducing NEET.
It notes that FE colleges may have different funding mechanisms, regulations and requirements, which may need a different approach.
What does Contact think?
The ambition to improve outcomes for young people with SEND to continue in education, training or towards employment is good.
But there is a lack of detail on how these improved outcomes might be achieved. We are concerned that the proposals are all framed for school settings. The proposals, including the plans for ISPs and EHC plans, need to work across all ages. There needs to be particular consideration of how the proposals will impact post-16 education, in particular:
How would Experts at Hand work in a specialist post-16 setting?
Will Specialist Provision Packages be age-appropriate for young people to enable goals around life skills, independence, further education and employability, not just school life?
Although EHC plans continue up to 25, they are for those with the most “complex” needs. This might limit the FE opportunities and funding available to a young person who no longer qualifies for an EHC plans under the reforms. It is positive that the reforms recognise the important role of specialist post-16 provision. But these reforms could lead to a gradual fade out of some specialist settings and courses if the funding isn’t there.
For all ages, the proposals include moving children onto the new SEND system at the point they transition from one phase of education to the next. This risks the support a student receives disappearing just at a point they might need it most. For post-16 education, support should bridge any transition to a new setting.
The proposal that local authorities provide a list of settings may bring particular challenges for post-16 students. Choices are already limited for this group. Placements may be further away from home, without the transport needed to get them there.
What is missing?
Transport is a huge concern for post-16 students, and something we have been campaigning on for some time. The challenge is simple: young people are expected to be in education or training until 18, but their rights to transport change at 16. If you cannot travel independently and cannot use public transport, how do you get to school or college?
How to respond to the consultation?
Many of the consultation questions will be relevant to post-16 education. Question 17 specifically refers to this age group:
Q17: How can we best support transition for young people with SEND, so that they are well supported into post-16 provision, including further education, higher education, training or employment?
SENDAP Reform, Sanctuary Buildings, Great Smith Street, London, SW1P 3BT
The consultation closes on11:59pm on 18 May 2026.
The Genetic Alliance UK has launched a new campaign called “Future for Rare.” The campaign aims to bring together people affected by rare conditions, as well as carers, charities, healthcare groups, and experts, to share their views on the next UK Rare Diseases Framework.
The UK Rare Diseases Framework is the UK-wide policy that aims to improve the lives of people affected by rare conditions. It is due to be updated in 2027. The UK government has asked all four nations to come up with ideas for what will help shape future policy.
Get the latest SEND updates, benefits advice, practical help caring for your child, plus free workshops and family events in our weekly email newsletter.
(Make sure you select ‘News updates’)
