Category: Information & advice


Contact’s Chief Executive, Anna Bird, has today given evidence to the Health and Social Care Committee about families’ experiences of health services in the early years.

The Committee is carrying out a review of the first 1000 days of a child’s life. Today’s session examined the provision of community paediatric services, asking witnesses for their views on the challenges families face in accessing services.

Anna talked about what Contact hears on our helpline and through our By Your Side hospital teams as well as from families who attend our Brighter Beginnings workshops. This includes:

Anna Bird said: “The families we support often have complex health needs and what they need is early access to good quality expertise and insight into their child’s condition as well as wraparound care for the whole family. But what they face are long delays for assessments, diagnosis and therapies. This leads to a child’s escalating needs and huge stress and negative impact on the family’s health and wellbeing.”

One mum told us her son waited over two years to be seen by a paediatrician and a further 3 years for him to get a diagnosis of Houge-Janssens Syndrome Type 4. They were completely unsupported during that time. Until that point, everyone assumed his delays were down to parenting rather than an underlying diagnosis. The paediatrician was reluctant to refer her son for genetic testing which meant he was not diagnosed until the age of 7. “He and we were really traumatised by the lack of support, which impacted school and our access to support.

What we would like to see:

Contact’s Brighter Beginnings programme delivers free online and in-person workshops to parents of disabled children on toileting, sleep, communication and behaviour in the early years. Our Helping Hand service provided a 6-week programme of support for families in West London on autism waiting lists covering behaviour, communication, carer wellbeing, anxiety and supporting their child’s sensory needs. These services need to be made more widely available for families, perhaps via referrals from the neighbourhood children’s teams, for example. 


Tonight MPs voted on the Government’s Pathways to Work Green Paper, which proposes changes to make claiming Personal Independence Payment and Universal Credit health element harder. Despite a lot of disquiet among MPs and lots of last minute changes, the bill passed.

Anna Bird, Chief Executive at disability charity Contact, said: “The families we support will feel despair and continuing fear after tonight’s vote. While the government made important concessions at the 11th hour, the chaotic way the bill was brought forward has added to a feeling of concern and lack of trust. It is essential the government follows through on their promise to listen and work with disabled people in their review of these proposals.

“Although there will be a review of the assessment for Personal Independence Payment we don’t know the outcome of that. And in addition new claimants for the Universal Credit health element who do not meet severe conditions criteria will still be receiving lower payments of that element which will also be frozen for 4 years. This is scheduled to happen from April 2026. So many people with disabilities and health conditions and their families will be substantially worse off. Our own research shows that families with disabled children are among the poorest in the country and 44% of parents of disabled children or their partners have a disability or health condition themselves. This vote will make life harder for many of them.”


There has been an rise in the number of Education Health and Care Plans (EHCPs), as well as increased delays and waiting times according to data released by the Department for Education today.

Anna Bird, Chief Executive at Contact and Madeleine Cassidy, Chief Executive at IPSEA said: “It’s unsurprising that there has been a rise in the number of EHC plans because it is currently the only reliable way to secure support in school for a child with special educational needs. The latest data shows the system needs rapid intervention, but getting rid of EHCPs is not the answer. Education, Health and Care (EHC) plans are a vital part of the SEND system and must be protected. They provide legally enforceable rights to support for children and young people, and we are clear that the Government’s forthcoming White Paper must not erode these legal rights. But making SEN support a stronger part of a schools’ duties will ensure more children can take part in school without necessarily first going through the legal process of getting an EHC plan.

“If we strengthen the offer of SEN support – such as brain breaks and some forms of smaller group work, support at playtime and speech and language therapy – some children may not require an EHC plan to get the support they need. It would also begin to restore families’ confidence in the education system. While this approach will require investment in resources and training, research shows this early intervention produces cost savings further down the line, as well as being the best option for children, who shouldn’t have to fail at school before they receive the support they need.

“What we’re proposing is simple and achievable. Contact and IPSEA have drafted an amendment to the Children and Families Act that could make a meaningful difference right now. If the government aims to make mainstream education more inclusive, the first step must be strengthening the legal duties around SEN support.”

This Carer’s Week, 9-15 June, Cheryl Abrahams, a brain injury lawyer at legal firm Bolt Burdon Kemp (BBK) and parent carer shares her personal experience of the difference it can make working somewhere which puts flexibility for employees at its heart, while her colleague, Louise Pye, head of Human Resources at BBK, outlines your rights as an employee who cares for a child with additional needs.

Contact’s Counting the Costs research found that the majority (62%) of parents carers had to give up a paid job or reduce working hours because of the difficulty of juggling caring and working. On average these parents have lost £21,174 of income per year.
And the latest census data by the Office for National Statistics (ONS) shows that unpaid carers – including parent carers – are providing more hours of care now than they were 10 years ago. Reduced support services such as respite care, physiotherapy, occupational and speech and language therapy, as well as mental health services means parent carers have been left to do more often complex care in their homes themselves and less able to combine work and caring.

Cheryl’s story: navigating parenthood and a demanding career

When I joined BBK in 2004, I was amazed at how progressive the firm’s flexible working policy was for the time. But it wasn’t until I became a parent carer that I truly understood its value. In early 2022, my son’s nursery started reporting incidents of aggressive behaviour. Things escalated as he transitioned to primary school, leading to school refusal, escape attempts, exclusion, and assessments. Eventually, he was diagnosed with Autism, ADHD, Sensory Processing Disorder and Dyspraxia.

The demands on my time were immense: attending countless school meetings, meeting his care needs at home and managing his challenging behaviours. My son attends a mainstream primary school and I’m in the process of applying for an Education and Healthcare Plan for him – an arduous and time-consuming process.

There’s no doubt that, without the flexibility and support I received at BBK, I would have had to stop working altogether. This flexibility – allowing me to start work later to support a calmer morning routine for my son, or to attend critical meetings during the day, and working from home in the evenings or at weekends, during periods when he was excluded and needed my support during the day – benefits not only me, but also my clients and their families. For many parents of children with complex needs they may need to juggle endless medical appointments, therapy sessions, and school meetings. These families need a solicitor who can accommodate their schedules, not the other way around.

My journey as a parent carer has profoundly shaped my approach to my work with families of brain-injured children. I understand what the parents of my clients go through, not just in their pursuit of justice for their children but in their day-to-day struggles to balance caregiving responsibilities with work, family and life.

My experience has helped me to better appreciate their anxieties, frustrations, and hopes. It has also strengthened my determination to fight for the best possible outcomes for them. Whether it’s securing compensation to cover care needs, ensuring access to therapy, or advocating for tailored educational support, I can offer reassurance and guidance to support them in their journey to ensure their child’s needs are met.

Louise Pye, head of HR at BBK on why flexibility benefits everyone

At BBK, we understand there’s no one-size-fits-all solution when it comes to flexible working. For some, it might mean adjusting start and finish times; for others, it’s about working fewer hours or being available for school pickups. At BBK, we offer flexibility to all staff—not just parents or carers as required by law – because we understand everyone’s circumstances change over time and even from day to day.

We’ve seen first-hand how a culture of flexibility benefits not just employees but also the business. When staff feel supported, they’re more engaged, productive, and loyal. For working parents and carers, this means they can focus on their families while maintaining a fulfilling career. For clients and their families, this means having access to a responsive, empathetic and client-centred service that takes account of the unique challenges they face. We’re proud to foster an environment where flexibility is more than just a policy—it’s a practice embedded into our culture. By doing so, we aim to set an example for other employers and show true flexibility isn’t just about ticking a box; it’s about valuing people as individuals.

Your legal rights

As of April 2024, all employees in England, Scotland, and Wales can request flexible working from their first day of employment. This could involve:
• Adjusting start and finish times.
• Reducing working hours or days.
• Working from home.

Rules on flexible working are different in Northern Ireland.

Employers must consider requests for flexible working seriously. While employers can refuse requests for clear business reasons, the law gives you, the employee, the right to apply up to twice a year.

Resources like Gov.uk, ACAS and Contact provide templates and advice on how to make a request.
If you are a parent of a disabled child, the Equality Act 2010 offers additional protections. If an employer’s refusal disproportionately disadvantages you due to your caring responsibilities, this could constitute disability discrimination by association. Charities like Working Families offer guidance on what to do if your request is refused.

You’ll find lots of information on our website about flexible working, parental leave, carers leave and time off for dependents.

Read Cheryl and Louise’s blog in full.

Bolt Burdon Kemp and Contact

Bolt Burdon Kemp (BBK) is a long term supporter of Contact providing funding for our By Your Side in hospitals programme and BBK staff also kindly volunteer for Contact and take part in fundraising events.

Read BBK’s step by step guide to making a medical compensation claim.

Listen to Contact’s podcast with Caroline Klage from BBK about how to help your child make the move from primary to secondary school.

On 3 March, parent carers across England and Wales – who care for a child without an Education, Health and Care plan (EHC) plan or Independent Development Plan (IDP) – learnt what secondary school their child will go to in September. (In Northern Ireland, post-primary school places will be sent out on 10 May and in Scotland no offers are made as councils decide where pupils are placed.)

Moving to secondary school is a big step for any child, but if your child has additional or special needs, it is particularly daunting. While there will undoubtedly be challenges along the way, careful preparation and support can make a world of difference.

Here, Caroline Klage from our friends at law firm Bolt Burdon Kemp explores some of the challenges your child might face during the move from primary to secondary school and provides some practical tips to help from her unique perspective both as a parent of neurodivergent children who have already made this transition and also as a specialist brain injury lawyer with over 25 years’ experience supporting seriously injured children and their families through this journey.

In this article

Understanding the challenges

The transition to secondary school is huge. Your child will have to find their way around a busy, noisy, unfamiliar building, adapt to multiple teachers – all with different teaching styles – and may take on a demanding curriculum with multiple subjects. A more physically demanding day adds to fatigue, while any mobility issues or medical needs become more difficult to manage in a larger school. Navigating timetables, keeping track of belongings, understanding and noting down what homework is being set and managing classroom changes as well as trying to find time to have a snack, lunch and to go to the toilet are tricky for any child. Secondary school is a constant set of transitions, from the moment your child steps foot into the building.

Change for humans can cause anxiety, especially if it’s unexpected. For children with additional needs, particularly those with Autism Spectrum Condition (ASC) or a brain condition, who struggle with memory, concentration, organisation and/or processing new information, the anxiety is magnified. They may not be able to remove themselves from a situation, causing overwhelm and they may not be able to fully communicate what they’re experiencing, compounding their difficulties.

A child in this situation may go into ‘fight or flight’ mode. In fight mode, they could kick, scream, hit out, spit, throw, punch, yell or use mean words. In flight mode they could run off, hide or become fidgety or restless. Or they may go into freeze mode, shutting down and being uncommunicative and unresponsive.

How to help your child

As soon as your child knows what school they are going to they will want to know more about it. This is the time for both the school and you to be proactive in terms of information gathering and communication. It helps for the new school to find out as much as possible about the child from their primary school and from you, their parents. The school can also invite your child in and allow them to take photographs or even create a video. They can introduce them to key members of staff and, where possible, offer opportunities to meet other students they’ll be working with. While many secondary schools offer a transition day, this is usually in the summer term, but for some young people even waiting that long can be really anxiety provoking. So, the sooner you can get in touch with the school, ideally through the Special Educational Needs Coordinator (SENCO) in England or Additional Learning Needs co-ordinator in Wales, the better. This is also the time to think about changes to morning and afternoon routines at home. Your child will need to gather and pack the items they need for each day. They may need to leave home and set out for their new school earlier, and travel further, using a different mode of transport, possibly travelling independently for the first time.

Children with ASC or a brain condition often struggle with planning and organising themselves, making decisions, regulating their emotions and controlling their behaviour. If they can’t figure out what they need to do in the morning, or they’re worrying about which books they need to pack, or they can’t find their PE kit, they’ll have an anxiety driven morning, which will play out during the rest of the day and in the worst-case scenario, could result in school refusal.

So, a calm start to the day is essential. And parents can really help with that. Involve your child in creating a visual step-by-step schedule for the morning routine to support their independence. They may not need this all the way through school, but having this ready at the beginning of secondary school will help them get into school feeling calm and ready to learn. A similar schedule for the after-school routine can help your child keep up to date with homework assignments, get ready for the following day, as well as time to rest, relax and recharge after a full day of school.

What to do when things don’t go as planned

Sometimes, even with the best preparation, your child may be so overwhelmed by anxiety or by something that’s happened during the day, their fight, flight or freeze behaviour becomes hard for you to manage. In these situations, even if the behaviour can feel threatening at times, it can be helpful to remember that behaviour is just your child’s way of communicating emotions they aren’t able to articulate verbally. Try to take a step back, take a breath, and disengage your own emotional reaction to what’s going on so you can try to figure out what’s going on for your young person. What could have triggered that response? Getting angry or upset is only like to escalate an already challenging situation. If your child is in fight or flight mode, having a safe space they can retreat to, like their bedroom if they’re at home, or a quiet room if at school, can help calm things down.

Communicating with a child in freeze mode is not easy but side by side conversations, say during a car journey or a walk, can help a child feel able to explain what’s going on. Sometimes taking all verbal communication out of the equation and relying on texts, Whatsapp messages and so on works well for young people.

Caroline’s top tips for moving schools

Each child is unique and there is no one size fits all but, to sum up, here are some strategies that have helped me, my children, and my clients with serious brain injuries, manage this important milestone:

Build a relationship with the school early

Meeting with the school’s Special Educational Needs Coordinator (SENCO)/Additional Learning Co-ordinator or inclusion team early. Share your child’s diagnosis and evidence confirming this with the SENCO /Additional Learning Co-ordinator, inclusion team. This will help you to get them to take you and your child seriously. And share information about your child’s condition and needs, their strengths and challenges before the start of the new school year.

Create a transition plan

Work with your child’s school to develop a clear plan outlining the support your child will need, including classroom adjustments, rest breaks and additional resources. Any information which will help teachers to understand and support your child could be included in a “passport” which the SENCO/Additional Learning Coordinator can prepare with you and circulate to your child’s teachers.

Get to know the school environment and the journey to and from school

Arrange school visits and meet key staff, practice navigating the layout of the building. Also rehearse the journey to and from school.

Prepare your child for the social side

Connect your child with other pupils starting at the school by setting up playdates if possible and attend induction events. ole-play social scenarios with your child such as introducing themselves or asking for help.

Equip your child with practical tools

Provide organisational systems like a colour-coded timetable or labelled folders for each subject and teach them to use a planner to manage homework and deadlines.

Establish a consistent routine

Help your child create a predictable routine, with time for rest and preparation, including packing bags and laying out clothes the night before to avoid any last-minute wobbles the next morning.

Monitor your child’s wellbeing

Regularly check on your child’s emotional, social, and physical wellbeing. Look out for signs of overwhelm, such as increased anxiety or reluctance to go to school and address these early.

Communicate with the school

Stay in touch with teachers and learning support staff to ensure your child’s needs are being met. Request additional support or adjustments if necessary. Also, celebrate small wins and focus on positive reinforcement and acknowledge your child’s achievements, no matter how small, to build their confidence and resilience, focussing on their progress rather than perfection and use positive reinforcement.

Encourage independence gradually

Teach your child strategies for self-advocacy like encouraging them to ask for help or explain their needs to teachers. Gradually increase their daily responsibilities, such as packing their bag or managing their timetable, with your guidance.

More support for you as a parent

Supporting a child with ASC or a brain condition can be emotionally and physically taxing. Don’t forget to:
• Seek professional advice: Engage with specialists such as occupational therapists or educational psychologists who can offer tailored guidance.
• Connect with other parents: Join support groups or forums for families of children with additional needs to share experiences and advice like Contact’s Facebook group.
• Be kind to yourself: Give yourself permission to take breaks and ask for help when you need it.
• Remember: take a step back and take a breath. If you can tag team with a partner, then do so.
• Get advice, from Contact’s helpline, if your child is struggling, or the school are not providing the additional support your child needs. Ultimately, if your child’s needs cannot be met through the school’s existing resources, consider making an application for an EHC Plan assessment. An EHC Plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.

If you think your child’s ASC or brain condition is due to medical negligence or an accident and you need further advice or support, please don’t hesitate to get in touch with me at Bolt Burdon Kemp (BBK). As someone who works closely with families of children with brain injuries, I understand the unique challenges you face and am here to help.

Listen to our podcast about how to help your child make the move to secondary school

Listen to our podcast where Caroline talks to us about her tips for a smooth transition from primary to secondary school.

Additional information

Bolt Burdon Kemp (BBK) is a long term supporter of Contact providing funding for our By Your Side hospitals programme and BBK staff also kindly volunteer for Contact and take part in fundraising events.

Read BBK’s step by step guide to making a medical compensation claim.


There has been a media report that the government is due to publish its proposals for major changes to the special educational needs system in England.


The Guardian newspaper article says that the Government will be publishing a White Paper in the Spring to help reduce the deficits that local authorities have.


Contact is concerned that this is before ministers and officials have had a chance to speak to parents, young people and charities.


Imogen Steele, Contact’s Policy lead for Education, said: “Contact would strongly oppose proposals which reduce the rights of children with disabilities and additional needs.


“We know that short term cost cutting, leads to greater need and higher costs in the future.


“We want to see standardised SEN support readily available across mainstream schools. This would include small group support, adult support during break time, visual cues such as pictures and task boards and access to emotional support including a class exit card. We also must see education, health and social care working together to ensure needs are met at the earliest stage and a well-trained workforce, with the ability for schools to call in expertise as needed.”

This news story is for parents in England only. See our education advice if you live in Northern Ireland, Scotland or Wales.

If your child has an Education, Health and Care plan, there is a different admissions process that applies to your child.

Parents whose child is leaving primary school will have completed their preferences for secondary school last October.

Today, on National Offer Day, parents will receive a single offer of a school place for the child for September.

What happens on National Offer Day?

The schools you listed in your application will have each decided whether they can offer your child a place.

The local authority will have considered these offers against your preferences, along with everyone else’s.

And on National Offer Day, you’ll get a single offer of a school.

Your offer will be the highest preference school on your list that can give your child a place. If none of your preferences can offer your child a place – because too many other children are higher up on the oversubscription criteria – you’ll be offered another school.

This is likely to be the nearest school with places still available. Usually there will be a form to complete with a deadline to confirm that you accept the school offered.

What if I’m not happy with the school offered?

If you are not happy with the school you have been offered, don’t panic. There are a number of things you can do:

We advise that you accept the school place offered if you can, even if was not your first child and you are not happy with the offer. This will ensure that your child at least has a guaranteed school place if your appeal or waiting list options fail.

Where can I find out more about this?

Visit our page on applying for a school place, where we go into more detail about your options if you’re not happy with the offer.

Contact’s very own Ellie and Lisa would love to see you on 13 March at the FREE Kidz to Adultz Exhibition at the Coventry Building Society Arena.

Kidz to Adultz events are totally dedicated to children and young adults (up to 25 years old) with disabilities and additional needs, their parents, carers and the professionals who support them.

Contact has teamed up with Kidz to Adultz to create a welcoming and fun space at all their events so parents, carers and children and young people with disabilities or additional needs can come together, share experiences and learn from each other.

Book your FREE tickets for the Kidz to Adultz exhibition in Coventry on 13 March. You can find Ellie and Lisa from Contact at the ‘Connection Hub’.

This year, Contact will be offering free one-to-one support sessions with their family support consultants, covering topics like Disability Living Allowance (DLA) & Personal Independence Payment (PIP); Education, Health & Care Plans (EHCPs); Transitions to school or adulthood; wellbeing support or simply a listening ear!

Ellie Goff from Contact says: “We were at one of Kidz to Adultz events last autumn and it was wonderful to meet so many parents who also enjoyed dedicated exhibitors, specialist seminars, information about support services, interactive gaming, guest appearances, and many fun activities throughout the day.

“Families visiting us in the exhibition’s Connection Hub can find out more about the support Contact offers as well as meet other parents – while their children and young people join in some fun activities and play with sensory toys and other products from our Fledglings shop.”

Come and say hello in Coventry on 13 March!

All Kidz to Adultz exhibitions happening this year are completely free for families to attend.

Ellie continues: “We’re looking forward to meeting parents, children and young people in Coventry on 13 March. Come along, say hello, try out our Fledglings equipment and products, join in the fun and participate in the activities taking place throughout the day. If you are in the area, why not book your free ticket and drop by – we’d love to see you there!”

Find other events Kidz to Adutz have coming up and register your free place.


Many families with disabled children need adaptations to their home, whether they live in private rented, social housing or they own their property.

Contact’s Counting the Costs research found that almost a third of families with a disabled child live in a home that does not meet the needs of their child. Of those, 43% say it needs adaptations.

If you need to adapt your home to make it easier for you or your child to manage, you may be entitled to a Disabled Facilities Grant (or Home Improvement Grant if you live in Scotland). This can cover adaptations including building works, ramps, hoists, grab rails.

But according to our survey, 27% of families with a disabled child are not aware of the Disabled Facilities Grant (DFG). Of the families who did apply 43% found the process poor or very poor. And over half said the grant did not cover the full cost of the adaptations needed with the average shortfall being £7,391. There are also lengthy delays in the process.

Currently the maximum grant is £30,000 in England and £36,000 in Wales. The government did agree to review the upper limit of the grant following a court case involving a family with a disabled child. We are currently awaiting the outcome of the review.

Anna Bird, Chief Executive at Contact, said: “Poor housing has a devastating impact on disabled children and their families both physically and mentally. The Disabled Facilities Grant can ensure families are able to care for their child at home safely, and stops them spiralling into crisis. Our survey findings show that this system of support needs urgent attention.

“The upper limit has not risen since 2008, despite the cost of materials and building work rising dramatically in that time. This has led to families having to crowdfund or give up on their projects entirely. Delays to adaptations can worsen a child’s condition which will lead to more costly interventions in the long term.”

Claire Pemberton, mum to Emilia, who has a rare genetic condition called PTEN hamartoma tumour syndrome, has been waiting two and a half years for a downstairs bedroom and bathroom. Emilia cannot climb the stairs alone without falling. And Claire has a spinal injury which means she cannot get Emilia into a stair lift. Despite this they have been waiting since 2022 for the necessary adaptations.

Through Contact’s Change Makers programme, Claire, who lives in Staffordshire, spoke to the BBC about their situation. She is hopeful that after a long wait, work is due to start in March. She said: “It will be life changing once the work is completed.”

This advice applies in England only.

Does your child have an Education Health Care (EHC) plan? Are they transferring to another school later this year?

If so, this coming 15 February is an important deadline. By this date, local authorities must have reviewed, amended (if necessary), and finalised the EHC plans for children transferring between different phases of education.

This includes transfers between:

15 February is a legal deadline, which means the local authority must comply with it. The deadline is set out in Regulation 18 of the Special Educational Needs and Disability Regulations 2014.

What must the local authority do to finalise an EHC plan?

Before the local authority issue the final plan, they must send you a draft EHC plan and ask for your views. The local authority must also ask you to say which school you would like your child to go to. To meet the deadline, your local authority should already have done these steps.

If the local authority misses the 15 February deadline for finalising an EHC plan, contact the local authority to remind them of their legal obligation and request immediate action.

Where can I find more information?

See our admissions webpage for more information about this process. If you are worried about your situation, contact our helpline for advice.

If your local authority does not name the school you want in the EHC plan, you have the right to appeal to the First Tier Tribunal (Special Educational Needs and Disability). Contact our helpline for further advice and information.


Today Contact’s Policy lead for Schools, Imogen Steele, gave evidence to the Education Select Committee’s inquiry into Solving the Special Educational Needs and Disabilities (SEND) crisis in England.


Imogen has been working with other charities and organisations including Special Needs Jungle and Ipsea to come up with solutions to improve the education system for children with additional needs.

Solutions


At an evidence hearing in parliament today, she was quizzed by MPs about Contact’s call for SEN support to be put on a statutory footing. This would mean that extra help would be available to those children with suspected additional needs, without the need for an Education, Health and Care Plan (EHCP). That support could be small group sessions, access to emotional and social help or access to a speech and language therapist. The committee heard that funding for SEN support has not increased in 15 years, and could be one of the factors driving the increase in demand for EHCPs.

Action is urgent


Imogen said: “We are confident that with the right action, meaningful and sustainable change is possible for children and young people with Special Educational Needs and Disabilities (SEND). Early support is key, as well as good advice and information. Parents knowing that schools will provide a certain level of extra support for children without the need for an Education Health and Care Plan. This could all make a huge difference.


“It’s good the government is genuinely listening to help shape their plans for solving the crisis. But action is urgent. We hear on our helpline everyday of children and families being let down.”


Imogen also made the case for joint accountability for special educational needs provision.

Imogen added: “There should be consequences for local authorities which are routinely not complying with the law.”

She also spoke about the importance of home to school transport for many families and our campaign to close the loophole which means many 16 year olds suddenly lose their transport entitlement despite the law saying that they need to be in school or college until the age of 18.


We have submitted written evidence to the Education select committee, which will now speak to local authorities and schools as part of the next stage of their inquiry.


The Chair of the Public Accounts Committee, Sir Geoffrey Clifton-Brown MP, is backing calls for automatic payments of unclaimed Child Trust Funds (CTFs) if they haven’t been claimed by the account holder’s 21st birthday.  

Contact supports the goal of ensuring that savings held in CTFs reach their rightful owners – this must include savers without the mental capacity to manage their own finances. 

Continued injustice

Maria Scholey, Contact’s Policy lead on Child Trust Funds, said: “We welcome Sir Geoffrey Clifton-Brown MP shining a spotlight on the issue of unclaimed Child Trust Funds. There is a lot of work to be done in making young people aware they have money sitting in these funds that could be of great benefit. 

“Sadly for young disabled people who lack mental capacity they are not only faced with this barrier. They are also required to apply through an overly complicated process to access their money. The previous government failed to take the action needed to bring an end to this continued injustice. We are now urging Labour to look at the solutions that we have presented (for example extending the appointee scheme or adopting the industry process already in use by several providers) and to resolve this issue once and for all. The future of young disabled people matters. Their savings must too.”

Parent led campaign

Over 80,000 disabled young people are currently at risk of being locked out of £210million of their own savings, due to the difficult and often costly, process required to access them. Contact are proud supporters of a parent led campaign run by Andrew Turner, which is asking the government to resolve this. 

Child Trust Funds were designed to help incentivise parents to save for their child’s future. Unfortunately, in what has since been described as a ‘mistake’, no provision was made for if the child did not have capacity to manage their own money at 18.  

Andrew Turner has campaigned with Contact’s full support for many years to find a solution that protects the rights of disabled young people, whilst not placing unnecessary extra burden on their loving and caring families.  


Today the Public Accounts Committee has published its report into the SEND emergency together with recommendations for addressing it.


Angie Fenn, Contact’s Head of Information and Advice, said: “Today’s report from the Public Accounts Committee highlights what families with disabled children have been telling us for many years. There is overwhelming evidence of the SEND system in crisis. What we need now are urgent solutions and the committee’s recommendations and deadlines are welcome. Better data about the growing need and future planning of support services is essential. We have long called for education, health and social care to work more closely to provide support to disabled children so they are helped both in and out of school. We are hopeful that a clearer idea of what inclusion looks like and how it will be resourced will come from the Education Select Committee’s much needed SEND inquiry.”


Contact’s SEN policy lead Imogen Steele will give evidence to the Education Select Committee’s SEND Crisis inquiry later this month. We will ensure parents views are represented, reporting information and experiences we receive on our helpline and other frontline services.


Contact’s three asks to improve the SEND system offer solutions to the SEND crisis. We’d like to see duties placed on schools to provide a certain level of special educational support to ensure more children have their needs met without the need for an EHC plan. We need greater accountability in the system. And investment in schools’ special education workforce is also urgent. The recent moves to train and recruit more educational psychologists are welcome.


The Public Accounts Committee also published data on Education Health and Care Plans, which shows huge discrepancies between each local authority area. For example in Portsmouth just 1.6% of EHCPs are issued in the 20 week timeframe, but in neighbouring Southampton it is 100%. In Derbyshire 17.8% are done in the timeframe, with neighbouring Nottinghamshire on 32.3%.


The account committee rightly says that “rates of even 80 and 90% should be considered inadequate given the uncertainty and anxiety the delays can create for families.”


Today in parliament, MPs will discuss the government’s new Children’s Wellbeing and Schools Bill for England.

Much of the media interest in the Bill is about proposals to protect children at risk of abuse. This includes plans to introduce new registers to identify children who are not in school. But the Bill is wide ranging. It also includes measures on breakfast clubs and branded school uniform; attendance of children at school; inspections of schools and colleges; and school admissions.

Contact has been looking at the detail of the Bill. And we have been briefing MPs about some of our concerns and those that parent carers have raised with us. In particular, we are urging the government to ensure the bill doesn’t discriminate against disabled children home schooled due to a lack of suitable school places available.

We urge the government to consider the Bill’s impact on disabled children

Una Summerson, Head of Policy at disability charity Contact, says: “We welcome the government’s focus on improving children’s lives in the Children’s Wellbeing and Schools Bill or England. There is much to applaud in it. As it progresses through parliament, we would urge the government to pay particular attention to how it will impact disabled children. Getting it right for disabled children, greatly benefits all children.

“The government must ensure equal access to breakfast clubs for disabled children. Any exemptions must be carefully considered so as not to cause discrimination. We would also urge the government to look again at its proposals on home education, as there may be unintended consequences for disabled children. It doesn’t seem fair that parents forced to home school a disabled child, because a school can’t meet need, must then seek local authority permission in line with children at risk of harm. This could lead to children forced to stay in an unsafe environment.

“The bill provides a welcome opportunity to end the use of seclusion rooms in schools. The harm caused to children put in seclusion is great. And research shows those with additional needs are disproportionately subjected to the measure. The changes proposed for academies to bring them in line with other state schools are also positive. Research shows that academies have not always been beneficial to children with additional needs, as the school can act outside the rules and duties of the local authority. The changes should ensure academies are more welcoming to children with special educational needs.”

School transport can be the glue that helps hold things together for families with disabled children but we’re hearing from more and more families with teens over the age of 16 that transport has been taken away and it’s having a damaging impact on the whole family.

And recent media coverage has helped highlight increasing numbers of young people who, without council transport, just aren’t getting to college at all and are missing out on vital education – like this family who spoke to the BBC this week about how this has impacted them, Son ‘never leaves house’ after Birmingham special needs transport cuts.

Young people over 16 do not have the same rights to free transport as children of compulsory school age, instead transport for 16-19 year olds is discretionary, and local authorities may ask parents for a contribution. Many areas are changing their transport policies for 16-19 year olds and will offer parents a personal travel budget in the first instance, rather than a seat in a school bus, minibus or taxi.

Parents tell us that this is putting them under financial pressure – that costs are unaffordable and that many have to give up work just to get their young person to college.

Help us change this

We think this is unfair and are campaigning for change. Our School transport campaign, will work alongside families to scope out the picture of home to school transport for all ages of disabled children across England and use this to influence policy, raise awareness in the media and campaign to improve school transport for disabled children and young people.

Your experience and views are important to us. If there is something you would like to say about school or college transport, please email [email protected].

If you need advice or information about transport to education have a look at our online transport information. You can also get in touch with our helpline.

We wanted to say Happy New Year to all our families and to thank you for being an essential part of what we achieved throughout 2024.

We had the privilege of supporting over 400,000 families across the UK last year, offering advice and information that helped transform lives.

Our Family Finances team helped eligible families increase their household incomes by an average of just under £6,000 a year and the parent advisors on our helpline responded to nearly 10,000 enquiries from parent carers.

More than 2,700 children and parent carers attended one of our family events to connect, learn and share their experiences.  At the same time, our By Your Side team reached over 1,700 families with seriously sick and disabled children in hospitals across the UK, providing crucial advice to navigate our complex systems of health, social care and education support. Through this support, families were empowered to get the benefits they are entitled to at a time when they needed it most. 

Making a difference together

In a year of huge political change, we’re proud to say that with your help we successfully influenced some key government decisions in 2024 like increasing the earnings limit on Carers Allowance so carers can earn more without losing this essential benefit. We also supported a parent carer’s fight to change England’s free school meals guidance ensuring that schools must now provide an alternative to disabled children who can’t access their free school meal in the usual way.  

More recently, over 4000 shared your experiences with us by taking part in our Counting the Costs research, shedding a light on the devastating impact of delayed assessments for children with additional needs, reduced access to therapies, dwindling health and social care services and lack of suitable school places.

We are hugely grateful to the thousands of you who made your voices heard and worked with us to make positive change for families across the UK – whether through writing to your MP, participating in our surveys or speaking out in the media.

Help us be there for families when they need us in 2025

The need for Contact’s support has never been greater. Families with seriously ill and disabled children face increasingly difficult challenges, and we’re committed to being there for them every step of the way.

But as a charity, we rely on the generosity of our supporters to continue offering life-changing help.

This winter, if you’re able, please consider donating to our Lifeline Appeal. Your gift will help us provide essential advice and emotional support to families, preventing financial crises and easing the turmoil they face daily.

Alternatively, why not kick off your new year with a resolution to make a difference in 2025? You could join our DinoDay Facebook Challenge in June or sign up to Contact’s Weekly Lottery at any time of the year for the chance to win up to £10,000 every Friday!

Together, we can make 2025 a year of transformation for families with disabled children who need us most. Thank you for being an essential part of this journey.

Wishing you all a happy New Year!

From all of us here at Contact, we want to wish all our families a very Happy Christmas!

We hope you’re enjoying the holidays. But remember, if you’re looking for help while our helpline is closed until 9:30am on 2 January 2025, you’ll find lots of advice and support on our website.

Until then, Chatbot Charlie can help guide you through our online information and advice so you find the support you need quickly and easily, whenever you need it – 24 hours a day, 7 days a week. Look out for Charlie at the bottom of our website on the right hand side.

Happy Christmas everyone!

Our helpline will be closed from 2pm on Tuesday 24 December, and will re-open on Thursday 2 January 2025 from 9:30am.

If you need to speak to someone when our helpline is closed over Christmas, the following support organisations may be helpful:

Sending emails, web forms and asking questions on our social media pages and private Facebook group

Many parents choose to send us helpline emails, submit a website enquiry or post on our Facebook and Twitter pages. These pages and email accounts will be unmoderated during the same period as our helpline closure.

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. Charlie can 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 Monday 23 December to Sunday 5 January 2025 inclusive.