Category: Information & advice


Many parents of children with additional needs talk about the battle to get support for their child. One of the routes of complaint about this for families in England is the Local Government and Social Care Ombudsman (LGSCO).

Earlier this month the LGSCO published its annual report for the year 2024-25, which showed they are dealing with record numbers of complaints – exceeding 20,000 for the first time.

Investigating complaints about local authorities

Complaints about education and children’s services are still dominating its casework. Housing has now moved to the second biggest area of concern overtaking adult social care.

The LGSCO investigates complaints about local authorities. It can look at how a council has dealt with a child’s special educational needs. They can also consider complaints about social care and housing. You can’t complain to the Ombudsman about something which you can appeal to the SEND Tribunal about.

Daily battle

Amanda Elliot, Health and Social Care policy lead at Contact, said: “Many families with disabled children use the complaints process of the LGSCO because they are unable to access the support they need for their child. It is a long and time-consuming process to follow the local authority complaints process and then go to the LGSCO, so it is not something entered into lightly. The record number of complaints to the LGSCO is a sad indictment of the daily battle that parents talk about and the state of the public services they rely on.

“It’s why we believe the government should implement the Law Commission’s proposals in full and why it’s crucial that the forthcoming SEND reforms create a system that works for every child – strengthening support for children who do not have an Education, Health and Care plan, while protecting current rights.”

Contact’s social care asks include a separate social care assessment pathway and national eligibility criteria.

Making a complaint about services

We have information about how to complain about services, whether that’s a refusal to assess, delays or quality.

The NHS is urging parent carers across the UK to check whether their child has had one or both doses of the MMR vaccine. This vaccine protects against measles, mumps and rubella, three serious illnesses that are spreading again.

Measles spreads easily and there have been outbreaks in England and Scotland this year, mainly in unvaccinated children under 10.  This month, a child in Liverpool died after getting the disease. Summer is known to be a riskier time as families travel to countries where there are also outbreaks.

Health chiefs say it is very important that every child gets both doses for full protection. The number of children who have got the first dose of the MMR vaccine is nearly at target levels, but there is a big drop in the number of children getting the second dose.

The vaccine is free and available anytime, so if your child has missed one or both doses or is now older, it’s never too late to catch up.

How do I check if my child has had the MMR vaccine?

How do I book an MMR Vaccine?

There are various ways to book an MMR vaccine depending on where you live in the UK. But in all four nations, the vaccine is free and can be booked at any time.

England: Call your GP practice to book. Some areas also have walk-in clinics which are listed on council websites.  

Scotland: Contact your local NHS immunisation team (full list by area here) or contact your GP.

Wales: Contact your GP

Northern Ireland: Contact your GP or visit nidirect.gov.uk for local clinics.

Need more information or want to speak to someone?

Public health bodies say that some communities, such as ethnic minority groups, newly arrived migrants, and people whose first language isn’t English, face more barriers to getting vaccinated and have lower rates of vaccination. This can be for many reasons including not knowing how to get vaccinated and finding it harder to access information. It’s also understood that parents from all communities may have concerns about the vaccine and its safety.

If you’re worried or have questions, speak to your GP practice. They can explain the process and talk through any concerns you might have.

Useful resources

Easy-to-read leaflets and videos in many languages are available at:

www.nhs.uk/MMR

NHS Inform (Scotland)

Public Health Wales

NI Direct MMR

A list of symptoms and advice on what to do if you think you or your child has measles is available on the NHS website


Some mainstream schools have specialist units or resource bases attached to the school which provide extra support to children who have additional needs. The Department for Education has launched a survey to collect parent’s views on Special Educational Needs and Disabilities (SEND) units in mainstream schools. This survey is for England only. It closes on Wednesday 13 August and will take around 20 minutes to complete.

It comes at a time when the government is trying to increase inclusion and wants to understand if specialist units or resource bases could part of the solution to the current SEND crisis.

Contact is also interested in hearing from parents and families about your views and experiences of SEN units. We are running some online focus groups in August and September, to hear from you. Book a place today. We are offering a £20 voucher as a thank you for taking part.

What are the issues

When specialist units and resource bases work well, they enable inclusion.  However the success of these units is dependent on how well they are resourced as well as how effectively they interact with the wider mainstream school. It’s important that they are staffed by those who have appropriate teaching qualifications.

Recently, many local authorities have increased the number of specialist units in mainstream schools in their areas without any government guidance.

If the units are set up in a rush, as a means of reducing costs, they can lack resources. If this happens there is a risk disabled children will be segregated from their peers and taught only in the unit, without any interaction with the wider school.

Calls to Contact’s helpline suggests these units vary dramatically from one school to another.

My experience of a specialist unit

Here our education policy lead, Imogen Steele, shares her experience.

“Having been born with cerebral palsy, I attended a specialised unit in a mainstream secondary school, and it was truly amazing. The unit was designed to support a small group of pupils with physical disabilities. I was completely included in the mainstream school. All of my classes took place in the wider school. I used the unit for physio, OT, a place to rest when I needed and a base to catch up on any work I missed.  In all of my classes, I was supported by Learning Support Assistants who were attached to the unit.

“However, many units function very differently. I can imagine how isolating it would have been to be stuck in the unit all the time, taught away from my peers in a separate room with different teachers without access to the same opportunities as others just down the corridor. “

What Contact thinks

It’s important that the Department for Education hears from parent carers and young people when shaping policy , so we welcome their survey.

Contact would like to see clear guidance for specialist units to ensure they are appropriately funded, staffed and founded on the principle of inclusion, respecting and protecting every child’s right to a mainstream education, whilst not replacing the role of special schools.

Done well specialist units have the potential for more young people to feel included in their local school community. However, increasing them without suitable regulations or guidance, could lead to them being entirely separate in teaching and location from the mainstream school.

Have Your Say

Tell the Department for Education your thoughts about specialist units or resource bases in mainstream settings by completing its survey.

Contact are running some focus groups so we can hear your views and experiences of SEN units, please book a place here. They are online and we are offering a £20 voucher as a thank you for taking part.


We are now into the second week of the summer holidays in England and Wales, and the last remaining weeks of the summer holidays in Scotland and Northern Ireland.

Lots of parents have been sharing their experiences of the difficulties finding suitable holiday clubs and childcare during the holidays for children who have a disability or additional need.

Turned away

Anna Bird, Chief Executive at Contact, said: “Although holiday clubs are meant to welcome and include children with additional needs, in practice this often doesn’t happen. Many children and young people with additional needs are turned away because they have personal care needs, or the club can’t provide the 1-1 care they require.

“Families who do find a suitable club with availability, say it’s just for a few hours a day and for two days a week, not 9-5 Monday to Friday which would enable them to work.

“We’ve heard from parents who have had to give up jobs they enjoy, others have had to reduce the hours they work. For disabled children the lack of social contact and routine can lead to increased anxiety and sensory dysregulation. This can increase needs at home and also upon their return to school.”

Last year, as part of our strategy development, Contact asked parents what service they would most like to see and after an accessible education, parents said they would most like access to after school clubs, holiday clubs and community activities.

Give up work or unpaid leave

Ana Chivu from Barnsley has had to give up work for a medical company, to look after her daughter who is non-verbal autistic as there was no care available during the holidays. She spoke to the Daily Mirror about her experience.

Natalie Woods lives in Brighton with her three children. Her 11-year-old son goes to special school and needs 1-1 care. She works full-time as a therapist, but it having to take three weeks unpaid leave as there are not enough suitable holiday clubs available.

She said: “There are only two providers in Brighton that provide 1-1 or 2-1 care, so capacity is extremely limited. I really want my son to be getting together with friends and peers, it’s a social necessity and he has every right to do that. Instead a lot of the time he will be at home with a PA because there is so little available.”

Parent carers take action

Shumi Plastow and Emma Briggs, have set up their own wellbeing groups for parents of children with additional needs in Northamptonshire. Northants SEND Mummas has proved so popular that the friends applied for funding to provide stay and play sessions during the holidays.

Shumi said: “Parents do need to stay, so it is not a substitute for holiday clubs, but we are providing a chance for families to get out the house, socialise with others and have fun. We have organised activities such as silent disco, chocolate making, mini farm visit, bouncy castle and gardening workshop. Something for everyone. Children with additional needs deserve to be able to access stimulating and regulating activities during the school summer holidays. Siblings and dads are also welcome to come.”

Anna Bird added: “We need to prioritise provision of holiday clubs for disabled children. There are some great ideas including special schools taking it in turns to provide care for one or two weeks in the holiday to accommodate local disabled children. In addition, we need to address holiday club and childcare workforce issues, ratios of staff to children and special educational needs training to ensure more disabled children are able to enjoy clubs in the holidays.”

Further information

We have information and tips about planning days out and getting support accessing leisure activities, as well as lots of advice and information about finding suitable childcare.

Esther-L, lives in north London and is mum to 7-year-old Eva and her sister, Zara, who is 3. Eva has a bowel and heart condition and has spent long periods in hospital, including Great Ormond Street Children’s Hospital (GOSH) in central London where she met Jill from Contact’s By Your Side Team. Here Esther shares how at such a stressful time, why it was so reassuring to be able to talk to Jill from Contact:

“Eva is a happy-go-lucky little girl but has been going through it health-wise. Her ongoing heart and other medical conditions mean that she sometimes has to spend lots of time in hospital – usually 2 weeks at a time. But the last time I spent 4 months at GOSH with her, and no one could have prepared us for that. And, to add to the stress, at the same time I was also dismissed from my job, which I had started a few months earlier, as I desperately tried to juggle things at home, work, and hospital. This added to the enormous stress I experienced during this time.

“I said hello, got chatting to Jill from Contact – and never looked back!”

“During this long hospital stay, I spoke to the social work team there who suggested I apply for Disability Living Allowance (DLA) for Eva to help pay for some of my extra costs. My mum, seeing how the stress was getting to me and how upset I was, suggested getting in touch with a charity called Contact, who she had read about, to see if they could help. And then coincidentally, I happened to see Jill from Contact’s By Your Side team setting up a table and putting out loads of leaflets about the support they offer as I was making my way to the hospital canteen. I said hello, got chatting – and never looked back!

“During weekly visits to Contact’s desk at GOSH, they helped me with practical things like filling in the DLA form, which has made an enormous difference to my family. They also pointed me in the direction of the Family Fund to see if there were any grants my family was eligible for. I was able to receive payments to help with things like travelling to hospital and laundry costs as a result. I told Contact’s By Your Side team about losing my job and was encouraged to challenge my employer’s decision. Contact even put us forward to have Eva’s wish granted through their partnership with Make a Wish UK. We spent a few days as a family at Disney UK, and both Eva and Zara loved it. It was such a special time for us because Eva’s medical conditions mean it can be difficult to get away as a family because it takes such a lot of forwarded planning.

“Being a parent with a child in and out of hospital can be scary”

“As well as the practical help Contact’s By Your Side team provides, at such an emotional and worrying time, it’s also just lovely to see a friendly, familiar face. During our 4-month stay at GOSH, it was comforting to know that Contact would be there every Wednesday with information and support – and a smile. That continuity and knowing that Contact was at the hospital every week was reassuring, and I was never made to feel like I was being a burden in any way. Being a parent of a child who is in and out of hospital, often for very long periods, can be scary. As a parent, you go through an emotional rollercoaster, and of course, you don’t want to be upset in front of your child. Hospitals are big buildings with lots of people, but they can make you feel so lonely at times. It would be great if Contact could be at more hospitals so parents there with their seriously ill child feel less alone and stressed and that there is actually someone who understands what they are going through and is there just for them.”

Our recent Post-16 Transport Q&A highlighted the widespread confusion and challenges many families face when navigating travel support for young people with special educational needs and disabilities (SEND).

Our helpline team received dozens of questions from parent carers across England.  

Below are the key themes that came up most frequently, along with the guidance we provided:

Statutory v discretionary duties

Before age 16, transport for eligible pupils with SEND is a legal duty under the Education Act 1996. However, once a young person turns 16, local authorities are no longer required to provide free transport. Instead, they must publish a post-16 transport policy outlining what support is available, and they are allowed to charge a contribution. This discretionary duty continues until age 19.

Post-19 rights

From age 19 onwards, the law shifts again. Under Section 508F of the Education Act, local authorities must provide free transport if it’s necessary for the young person to access education or training. This duty applies to adult learners with an EHCP and must be based on individual needs.

Annual reapplication requirements

Many parents asked whether they need to reapply each year for post-16 transport. The answer is yes. Most councils require an annual application even if the young person is staying on the same course.

Medical, physical, and complex needs

Families highlighted concerns about how medical conditions (e.g. epilepsy, diabetes) and complex SEND profiles (autism, ADHD, learning disabilities) affect travel eligibility. Local authorities must consider whether a young person can reasonably be expected to travel independently. If not, transport should be arranged.

Financial contributions and bursaries

Most local authorities request an annual contribution for post-16 transport. However, families facing financial hardship can often apply for a reduced fee or seek support through the 16-19 Bursary Fund. There are two bursary types: vulnerable (up to £1,200) and discretionary (for costs like transport and meals).

Personal travel budgets and independent travel training

Instead of council-arranged taxis or minibuses, some areas offer personal travel budgets or support for independent travel training. These options should only be provided where appropriate and suitable for the individual young person

Motability

Having access to a Motability car does not mean families must use it to provide transport. Local authorities cannot assume availability or use of the vehicle without consent. This was upheld in an Ombudsman decision, which clarified that personal benefits cannot be used to discharge the council’s duty.

Transport for non-EHCP or part-time courses

Transport is generally only provided for full-time courses specified in an EHCP. Evening classes or leisure courses not listed in the plan may not qualify unless exceptional circumstances apply. However, changes can be requested through an EHCP review.

How to appeal or challenge decisions

Parents can appeal transport decisions through a two-stage process. If unsuccessful, they can escalate complaints to the Local Government and Social Care Ombudsman. It is important to refer to relevant parts of the local policy and provide supporting evidence including EHCP content, professional letters, and details of hardship or risk.

Still have questions?

Our helpline team is here to help. Call us on 0808 808 3555 or submit an enquiry.

More information on post-16 transport and our ongoing campaign can be found here: Transport for young people over 16 in England and our transport campaign.

Thank you to everyone who submitted a question and helped highlight the urgent need for clearer, fairer, and more consistent transport support for disabled young people in further education.

As part of our Rare Conditions Network, which was set up thanks to funding from the Pears Foundation, we are now excited to start sharing some of the new resources that have been created.

These resources have been created by rare groups themselves, for other groups to use or take inspiration from. Resources include packs for schools, activity packs, videos and information for Dads, and a transition tool to support young people with rare conditions.

Check out our Rare Conditions Network Toolkit

We also want to remind you of our online Rare Conditions Network Toolkit packed with information to help you run your support group. We’ve got lots of information on managing volunteers including advice on volunteer management, key policies and training.

We’ve also got a social media presentation on how to engage with families of children with rare conditions online.

Access our toolkit online and look out for more guides and resources coming soon.

Sign up to join our Rare Conditions Network today.

If your disabled child or young person is getting ready to move into post-16 education or training, you may have questions about transport support from your local authority.

To help you get the information you need, we’re inviting families in England to send us their questions about post-16 school and college transport – and then get a personalised response from our expert helpline team.

This is for families in England only. Submissions will close once we reach 50 questions, so we recommend getting yours in early!

How it works:

Parent carers can submit a question using our short online form which asks for:

Our team of expert helpline advisers will then carefully review each submission – and you’ll receive a personalised written response within a few days.

Submit your post 16 transport in England questions here.

Once we’ve answered the questions you’ve sent us we’ll share a round-up of key themes and advice tips on our social media and the Contact website.

If you miss out on asking your question, have a younger child or live in Wales, Northern Ireland or Scotland, you can still contact our helpline for advice on 0808 808 3555, select option 1, or complete our Helpline online enquiry form.

Join our post 16 transport campaign

Join Contact’s campaign to close the loophole in transport for disabled16-18 year olds for a fairer system where decisions are based on need not age. Add your name to a letter about this to the schools minister, Catherine McKinnell.

With forecasters anticipating temperatures of up to 31 °over the next few days, it’s important for parents, carers, and schools to take extra care to protect disabled children, who may struggle with the heat and keeping hydrated due to medical conditions, medications, or sensory issues.

What schools and early years settings should do

Schools have a legal obligation and duty of care to ensure that all pupils, including those with complex needs or EHCPs, are kept safe and supported, this includes during hot weather. Government guidance for England recommends schools and settings implement the following measures:

In addition schools should also:

Practical tips for families

Watch for signs of heat stress, exhaustion, and heatstroke. Provide immediate response by moving vulnerable children to cooler areas, sponge spraying, applying cold packs to neck/armpits, and if needed, calling NHS 111 or 999.

You can also sign up to Weather-Health Alerts via UKHSA and the Met Office for actionable heat alerts.

For more information about how to cope in a heatwave:


MPs on the Education Committee are calling for urgent reform of disabled children’s social care after an inquiry found disabled children and their parents were “treated with suspicion” and subjected to “inappropriate assessment” when reaching out for help.

In a hard hitting report on its recent children’s social care inquiry, the committee calls on the Department for Education to introduce national eligibility criteria for disabled children’s social care and set out how it will implement and fund the Law Commission’s proposal for a single legal duty to assess disabled children’s social care needs.

Anna Bird, Chief Executive of disability charity Contact said: “We warmly welcome the Education Committee’s report on social care, in particular their recommendations calling for national eligibility for disabled children and their families to access help from social care. The families we support will recognise the committee’s assessment that the current social care system overlooks disabled children. It is far too hard for families with disabled children to qualify for social care support and there’s a lack of transparency, so it is unclear who is entitled. So many families struggle on without short breaks or direct payments providing enormous amounts of care alone, sometimes for many years.

“Fixing disabled children’s social care is a crucial part of fixing the SEND system because they are key pieces of the same jigsaw. Schools are currently dealing with the fallout of a lack of social care support for disabled children and their families. We are delighted the committee is backing the Law Commission’s proposals for reform. We hope the government takes their recommendations seriously and implements them in full. This would be a huge step towards improving the lives of disabled children and their families.”

The committee’s recommendations are in line with Contact’s key social care asks for disabled children.  Evidence submitted to the inquiry by Contact, the Disabled Children’s Partnership and the National Network of Parent Carer Forums are quoted in the report.

The Education Committee says there is an “urgent need” to improve access to short breaks, respite care and holiday provision. It was “unacceptable” over half of parents couldn’t access the short breaks and respite services they needed. The report also condemned the culture of ‘parent blame’ that families experiences when asking for help.

“It is deeply concerning to hear that parents of disabled children are being treated with suspicion and undergoing inappropriate assessment processes when reaching out for help.”

Committee inquiry recommendations

The Department for Education:

About the Education Committee

The Education Committee is a House of Commons select committee of MPs that scrutinises the work of the Department for Education (DfE). While the committee cannot force the Department for Education to act on its recommendations, it is often powerful and influential vehicle for shaping policy.

We are delighted to announce that our Contact Scotland team have been awarded a grant of £97,774 over the next three years from the Health & Social Care Alliance (The Alliance) – the national third sector membership organisation for the health and social care sector, representing 3,500 members. 

Contact Scotland will use the money to support unpaid parent carers in Scotland who self-identify as having a disability and/or health condition, to better self-manage their health.

The work carried out by our team in Scotland thanks to this funding is one of 31 projects who received a total of £1.9 million from the Alliance.

The funding aims to help support people in the early stages of a long term condition diagnosis, disabled people or an unpaid carer to develop skills to manage their own health and wellbeing and reduce barriers to health and social care support and services.

Susan Walls, Contact’s manager in Scotland says: “We are thrilled to have been awarded this funding which will help Contact Scotland support unpaid carers to better self-manage their health while caregiving for their disabled children.

“It is an incredible donation that will transform the way we support parent carers and we are so excited to be partnering with The Alliance to deliver this three-year project.”

Find out more about Contact’s work in Scotland.


ISOS Partnership and the Local Government Association have today released a report looking at The Future of Home to School Transport.

In it they highlight the increasing cost of school transport and cite one of the reasons as being children with special educational needs travelling long distances because there are no suitable school places locally. The report makes recommendations for reducing the home to school transport bill for local authorities.

One of those suggestions is a 3 mile eligibility criteria (including most SEND students), at the discretion of local authorities. Contact is concerned about this as we have seen the impact of “local discretion” on Post 16 transport where it is being stripped away across the country. This criteria will not work for many SEND children and young people.  

Anna Bird, Chief Executive of Contact, said: “We are concerned that some of the proposals in today’s report dilute parents’ rights and may not meet the needs of pupils and students with special educational needs. These include the use of pick up points, the promotion of independent travel, the increase of Personal Transport Budgets and the proposal to transport to the nearest suitable school rather than a parent’s preferred school. All of these proposals could have a significant and detrimental impact on SEND children and young people, limiting choices and outcomes.  

“We understand the very real difficulties of increasing costs at a time when local authority budgets are under so much pressure. We believe greater access to welcoming and inclusive local schools and tackling expensive privatised bus and taxi companies would be a good place to start.

“We hear first-hand from parent carers across the country that a lack of council provided transport can have a devastating impact – with students sometimes missing out on school and families forced to give up work and left in financial hardship.  It is unfair to the balance the books on the backs of disabled children and young people. “

The positives 

The report positions transport as playing a “vital role in our education system”. And, it recognises that transport is linked to the current failures in the system – where many disabled children and young people just cannot go to their local provision. It also recognises that journeys are necessary, and families need support with them. 

It is encouraging that the voices of parent carers are included and that the report refers throughout to the specific circumstances of many disabled children/young people. 

“Assistance with travel to school can play an important role in reducing some of the barriers faced by families with children with SEND, with which other families do not have to contend.” 

The report notes the importance of council transport for many families with SEND children and young people and refers to our Contact survey where 81% of families receiving transport were satisfied with the service.  

Inline with our Close the Loophole campaign the report recognises the gap in transport for 16-18 year olds and the impact on SEND families. It proposes that transport should be available for eligible children from reception to Year 13 (with further proposals for Year 13 onwards for SEND students).  

What we’re doing 

We’re campaigning for change with our Close the Loophole campaign to fix the loophole in law for 16-18 year olds transport. 

We’re running a project looking at home to school and college transport thanks to funding from the Motability Foundation. 

We can help – if you need information or advice on school/college transport look at our online resources for transport in England or contact our  Helpline. 


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.”