The Children’s Act 1989 currently states that a child is disabled if they are “blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity”.
As well as being “ableist”, the definition is different from that used in special educational needs and disability (SEND) law. This adds “an unnecessary layer of complexity” and leaving local authorities using two separate definitions.
What definition of disability does the Law Commission want to see?
The Law Commission has recommended applying the Equality Act 2010 definition but extending it to include children born with conditions arising from parental addiction, or children who exhibit behaviour that challenges. The Equality Act definition excludes both these groups.
The Law Commission recommends that for the purposes of disabled children’s social care law, a child should be regarded as having a disability if both:
They have a physical or mental impairment.
The impairment has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.
The exclusions contained in regulations 3 and 4 of the Equality Act 2010 (Disability) Regulations 2010 should not apply to this definition of disability.
What else does the report say?
The report also recommends that new statutory guidance should:
Clarify that a recognised medical diagnosis is not needed to satisfy this definition of disability.
Clarify that the definition can encompass the diverse range of conditions that can affect a child’s ability to perform daily activities.
Address the particular circumstances of disabled children in adoptive families.
Other recommendations include calls for a new legal framework, national eligibility criteria and a legal duty to assess and meet the needs of disabled children to make the social care system fairer and simpler.
Tell your MP to push government to act
Contact has welcomed the Law’s Commission’s final report, published last week. We are urging families to join us in our calls to the government to implement the reforms.
A few weeks into the new school year, and children across the country will be settling in to the new routine.
Not Luke or Ryan.
They have a school place, and they want to go. They just don’t have transport to get there.
Because they are over 16, their transport has changed. The taxi and school bus that they have relied on for years has been stopped. Now their families, one in the South West and one in the Midlands, are trying to work out how to get their sons to their school and continue with their careers.
This is more of a juggle because both boys are disabled and have complex needs. They can’t go to the local school, and they can’t travel independently. But they need their education.
What’s the problem?
Young people like Luke and Ryan are expected to stay in education until they’re 18. Yet government guidance in England leaves post-16 school transport at the discretion of local authorities.
This “loophole” in the law, combined with a crisis in council funding, means many teenagers – who often have to travel much further just to get to a school or college that meets their needs – are being refused the transport support they rely on.
If your young person aged 16-18 years is missing education, or you are having to miss work or face the cost of transport yourself because of a change to council transport please get in touch: [email protected]
Contact would like to thank the 100 parent carers, disabled children and siblings who this summer joined our new project A Future for All, an arts-led project putting families, especially those often left out of climate change conversations, at the heart of change.
In partnership with Hope for the Future and Rowan Environmental Arts (REA), families enjoyed 10 outdoor events across Yorkshire between June and August.
Highlights included six spectacular storytelling performances, and four woodland workshops, where parent carers had dedicated space to reflect and discuss action on climate change, the environment, and issues that matter to their families, whilst their children enjoyed fun forest activities.
Parents who attended the summer events summed them up beautifully saying:
“We need so much more of this. The children love it. It’s such an accessible way to get kids and parents involved.”
“A very positive, inclusive, and engaging performance. It struck the right balance for a wide range of ages and confidence levels, including autistic children.”
In our next phase of the project, we’ll be working with even more families online to create collective manifestos for change. Keep your eyes peeled for invitations to join us in the coming months.
We’ll be sharing these manifestos with policymakers. And we’ll share video footage of our magical performances.
This project is all about building a brighter future for ALL. Especially parent carers and disabled children who may feel the impacts of climate change acutely.
Together, we’re making sure parent carer voices are heard and lead the climate and nature conversation, to help shape a fairer, more inclusive future.
Yesterday in Westminster Hall MPs debated the SEND education system in England, both the current state of crisis it is in, and the risks and opportunities the government’s forthcoming reforms create.
This debate was a result of the petition to retain legal rights to assessment and support in education for children with Special Educational Needs and Disabilities (SEND) led by the Save our Children’s Rights campaign. The petition was signed by over 122,000 people.
Over the course of the three-hour debate, MPs spoke of the need for legal entitlements to Education, Health and Care (EHC) Plans to be protected, for increased accountability in the system so that parents can take action when support is not provided, for teachers to be equipped with training so they can meet the needs of SEND pupils and a new funding system which prevents the postcode lottery of levels of funding and support which currently exists.
The strengthening of SEN support was also championed. Ben Coleman MP, supporting Contact and IPSEA’s call for SEN support to be put on a statutory footing, said:
‘Let us replace the vague phrase “best endeavours” with clear statutory duties, so that schools are legally required to identify a child’s needs, put a plan in writing, and either deliver that support or refer the case to the local authority.’
In a debate where there was standing room only and so many MPs contributed, here are some additional headline points:
Protecting EHCPs: Calls to safeguard legal entitlements to Education, Health and Care Plans (EHCPs).
Accountability: Demands for stronger enforcement when support is not provided.
Teacher Training: Calls for more resources and training to help schools meet children’s needs.
Funding: The “postcode lottery” in SEND provision and money wasted on tribunals instead of support.
Early Intervention: Repeated emphasis on catching needs earlier to prevent escalation.
Broken Trust: MPs acknowledged the “extreme, debilitating stress” families face trying to secure basic provision.
Dr Roz Savage MP, who sponsored the debate, stressed that “generic, standardised support can lead to a loss of potential” and urged tailored provision for every child.
Clare Young MP summed up the cross-party message:
“Whatever the new system looks like, it must give legal backing to ensure that all children get an appropriate education, and it must see parents as partners, not adversaries.”
How did the minister respond?
The new Minister of State for Schools, Georgia Gould MP, responded by outlining 3 principles that she will be guided by in her new role:
Voices first: Children, families, teachers and support staff must be at the heart of reform.
Early intervention: Support should be provided as soon as issues appear.
Local provision: Children should not have to travel miles away from their communities to access help.
She also made a clear commitment:
“There will always be a legal right to additional support for children and young people with special educational needs.”
What Happens Next
The Government is expected to publish its Schools White Paper later this autumn, setting out the detail of SEND reforms. .
The Education Select Committee has also confirmed their report on Solving the SEND Crisis will be published on Thursday.
The report calls for a new legal framework, national eligibility criteria and a legal duty to assess and meet the needs of disabled children.
And it highlights how outdated and fragmented laws from the 1970s and 1980s have created confusion, inconsistency, and unfairness for families with disabled children who seek help from social care services.
Opportunity to fix an outdated system
Contact’s CEO Anna Bird welcomed the report. She described the proposals as a “a once-in-a-generation opportunity to fix an outdated system that leaves thousands of families with disabled children without vital support.”
Anna added:
“There are more children living with complex health needs and disabilities. But it has become increasingly hard to qualify for social care support. Criteria is shrouded in mystery and different depending on where you live. And the application process has been too focussed on safeguarding and created a culture of parent blame when families are simply asking for help.
“The proposed reforms would not only relieve pressure on families caring 24/7. They also would reduce pressure on schools who are often left to pick up the pieces from social care failings. And it would help reduce poverty. We urge the government to accept the proposals in full and start on reform without delay.”
Take action
Contact is asking families to join us in our calls to the government to implement the reforms. Parents can use this template to email their MP to urge the government to accept the reforms and implement them swiftly. (This will take less than a minute).
The letter asks your MP to write to Josh MacAlister, Minister for Children and Families, urging the government to accept the recommendations and publish an implementation plan within two months.
What are the Law Commission’s key recommendations?
The report includes 40 recommendations for legislative reforms including:
National eligibility criteria to end the post code lottery of care for disabled children.
A new single statutory duty to assess the social care needs of disabled children,
A single duty to meet the eligible social care needs of disabled children, based on national eligibility criteria.
A requirement for direct payments to be sufficient to cover the actual cost of meeting a disabled child’s assessed care needs.
New statutory guidance for local authorities and families
The Law Commission recommends that people assessing disabled children should be required to have ‘the skills, knowledge and competence” to do so. It also calls for a single duty that would enable parent carers to request an assessment for themselves.
Children, parents, and carers should be in developing the new statutory guidance and national eligibility criteria. The Law Commission proposes a phased introduction of national criteria to allow time to assess their impact on local authority budgets.
Contact worked closely with the Law Commission to ensure they spoke parent carers. The final recommendations are in line with our key social care asks for families.
The Government has up to six months to provide an initial response to the Law Commission recommendation and up to a year to provide a full response stating which law reforms they plan to take forward.
This is an important opportunity for MPs to learn about Contact and the DCP’s Fight for Ordinary campaign, and for families to tell representatives how they want the SEND system to change.
We will be following drop-in closely and later this week sharing a round-up for what MPs and families discussed and what we want to see happen next.
Before the drop-in, parent carers are gathering in Parliament Square from 11.30am to show their support for the campaign. The rally has been organised by Let Us Learn Too and SEND Sanctuary.
And later in the day, MPs will be debating a petition to “Retain legal right to assessment and support in education for children with SEND” that has received over 120,000 signatures.
We’re on the lookout for volunteers to help our By Your Side team provide advice and information to families with children at Great Ormond Street Hospital in London.
You’ll be supporting our parent advisers on Thursdays, term time only, between 9am-2pm.
Having a child in hospital can be overwhelmingly stressful for parent carers. As well as emotional strain, families often face a raft of practical challenges. They’re often left feeling confused by the medical system and unsure where to turn for help. They can also struggle under increased financial pressure as they reduce work hours to spend more time with their child.
Contact’s By Your Side team currently offer support in five UK hospitals to any family who has a child with health needs.
We can guide them through the maze of medical departments and jargon they face and discussing any issues or challenges they face, for example around benefits, education, social care or how to find local support groups for example.
Families are free to drop in with no appointment needed. Ward visits are also possible if that suits the family better.
Sounds like something you might be interested in?
Please get in touch with Ruth Stone, Senior Parent Adviser in our By Your Side team for more information about this exciting voluntary role by emailing [email protected]
A paper published this month in respected journal Child Care in Practice shines a spotlight on work Contact carried out with Alder Hey Children’s Hospital in Liverpool, neurodiverse children and young people and parent carer forums in North-West England. Edge Hill University independently evaluated it.
The project highlighted in the journal explored how the environment at Alder Hey Hospital impacts children with sensory processing differences. This is something that affects around 60% of children visiting. This means that many can find coming to hospital challenging. They need additional support to help reduce their anxiety and engage in their treatments.
Mary Mulvey-Oates, who led on the project from Contact, said:
“We are thrilled to have the important work we did looking at creating a better sensory environment recognised and published in a key academic journal.
“Often it was small changes that made the biggest difference to children visiting Alder Hey. For example, offering a quiet space to wait or offering adjustments – like ear defenders, reduced children’s anxiety and meant they were better able to engage in their hospital appointments. The hospital offered sensory toys in waiting areas and used light projections to create welcome distractions for children during blood tests. Staff were encouraged to be ‘sensory curious’ and ask families and children about their sensory experiences and adjustments. One child on an inpatient ward was sensitive to light and had not slept for days. Fixing the curtains in their inpatient room meant they slept better and engaged positively in activities later that day.”
How hospitals can create more sensory-friendly spaces
The paper calls on hospitals to create more sensory-friendly spaces to help children and young people feel more comfortable and get fair access to healthcare by:
Making all areas of the hospital calmer, not just waiting rooms.
Creating quiet spaces with adjustable lights, sounds, and temperature.
Providing tools and resources that help children manage their sensory needs.
Having kind, understanding staff who listen and communicate in ways that suit each child.
Giving clear, personalized information before visits and checking if any changes are needed.
Training all hospital staff -including non-medical staff -on how to support children with sensory needs, using real experiences from families.
Mary continued: “We hope that other hospitals and health settings build on the work done at Alder Hey- working collaboratively with children and young people and their families to make sensory-friendly environments and sensory-curious care the norm, not the exception.”
Additional information about the project
Watch this short animation developed by Alder Hey Hospital and National Development Team for inclusion (NDTi) as part of the project to help people understand how hospital noises, lights and smells can distress or over stimulate some children with sensory processing differences.
HM Revenue & Customs (HMRC) has made changes to the Child Benefit eligibility criteria for families with a disabled young person.
The rules from 1 September 2025 allow much greater flexibility around the types of education provision and the number of hours of attendance accepted for a Child Benefit claim to continue beyond the age of 16.
What were the previous rules for eligibility?
Previously, young people had to be studying full time, which meant for a minimum of 12 hours each week.
Their course of study also had to meet specific criteria. Courses were limited to 16-19 study programmes and to home education that either started before the age of 16 or which was recognised as appropriate in an education health and care (EHC) plan.
What has changed?
There are two main changes that HMRC is making: to the type of education provision and the hours of education.
Types of education provision
Young people can now qualify for Child Benefit if they are home educated, but this began after their 16th birthday. They can also qualify if their course is not provided by a school or college, even if their course has not been approved by the local authority through an EHC plan.
Hours of education
HMRC have now made an exception to the requirement to be studying full time.
Young disabled people can now qualify for Child Benefit if they are studying for less than 12 hours each week. This is provided the number of hours of study is the maximum they can manage due to their health condition, disability or illness.
HMRC has already ended my claim for Child Benefit. Is it too late to claim?
Provided your young person is under the age of 20 and began their course of education before they turned 19, then you can make a claim for Child Benefit for them at any point, even if your old claim has ended.
Child Benefit can only be backdated for three months. You should contact HMRC and start the claim as soon as possible.
You can contact HMRC through the Child Benefit helpline – 0300 200 3100.
Will the same rule changes apply to Universal Credit?
Unfortunately the same rule changes don’t apply to Universal Credit. The Department for Work and Pensions can make a completely separate decision about your entitlement to benefits based on your child’s education.
To receive the child elements of Universal Credit, your child must still be in full time education of 12 hours or more per week on an approved course.
The NHS has announced that from January 2026 young children in England will be able to get a free chickenpox vaccination.
GP practices will offer a combined vaccine for measles, mumps, rubella and varicella (chickenpox) as part of the regular infant vaccination schedule. Children will get the MMRV vaccine in two doses, at one year and at 18 months. Slightly older children who’ve just missed out will be offered the vaccine too, though the NHS hasn’t further announced details yet.
The Joint Committee on Vaccination and Immunisation (JCVI) has recommended that children receive the free vaccine to prevent the severe – though rare – illness that chickenpox can cause. The vaccine programme will also prevent parents having to take time off work or resorting to booking an expensive private vaccine.
Earlier this week Richard Tice, Deputy Leader of Reform, made an ill-informed comment saying some parents are using and abusing free taxis to school for children with special educational needs or disabilities. Contact wanted to give a parent the opportunity to respond, as well as set some facts straight ourselves.
Ailith Harley-Roberts’s daughter Thalia is aged 16 and has Down syndrome. Ailith said: “The comments from the Deputy Leader of Reform on school transport were contemptible and ill-informed.
“Most SEND parents will have been up for many hours, clothing, feeding, administering therapy and medication to their children, before they even get to school. Accusing them of being lazy is damaging and irresponsible. Unpaid parent carers save the NHS and social care thousands of pounds every year.
“Children and young people with SEND often attend schools some distance from home. This is not parental choice. It’s ensuring their child can learn and get an education in a school that meets their needs. Sadly, local schools can’t always provide an appropriate education for children with additional needs.
“No parent wants their child in a car, bus or taxi for hours. They just want their child to have the education they have a right to and deserve, and also want to be able to work as much as possible which contributes to the economy.”
Contact responds to Tice comments
Angie Fenn, Head of Advice at Contact added:
“Parents make an application for transport to the local authority. Parents applying under the SEND criterion are required to provide reasons and any professional evidence why their child requires transport. It is completely wrong to assert that parents are abusing the system. In fact, our helpline hears regularly from families whose children have been turned down for school transport despite providing evidence of eligibility.
“Some children may be unable to walk to school because of a physical disability or medical issue. Others may have psychological or behavioural issues that put them at risk.
“According to our own research, only half of children who qualify for school transport get a council-funded taxi or bus. 49% have a family member who drive them to school and are paid a mileage allowance by the local authority for that journey.
“School transport is the glue that holds families with disabled children together. Without it, parents have to give up work to transport their child long distances, families spiral into crisis and young disabled people are more likely to drop out of school or college. This leads to fewer qualifications and life skills, stacking up higher costs in the future. It is the definition of false economy.
“Greater access to welcoming and inclusive local schools and tackling expensive bus and taxi charges would be a good place to start to reduce school transport costs for local authorities.”
Close the loophole campaign
Families across England are being denied school transport when their disabled child turns 16. While young people are expected to stay in education until they’re 18, an unfair loophole in the law means their right to council transport can suddenly change or end at 16.
Together with other parent carers, we’ve written a letter to schools minister Catherine McKinnell calling for a fairer system where decisions are based on need, not age.
The HAF programme provides free meals and activities outside of term time to children who get free school meals for benefits reasons. It ensures those from lower-income households don’t go without during the school holidays.
The DfE estimates that over half a million children benefited in the past year, saving their parents over £300. It has committed £600 million to extending the programme.
If you think your child is eligible for free school meals and the HAF programme, talk to the school.
Many disabled children are entitled to free school meals, but struggle to access them because of their disability or medical condition. Schools have a legal duty to make “reasonable adjustments” to the way they deliver free school lunches.
This autumn, don’t miss new dates for our popular Brighter Beginnings early years workshops.
We have upcoming sessions on early years education support, toilet training, and speech, language and communication.
Sessions run through September and into October. All workshops are online and last two hours.
“I found the workshop extremely helpful, I have a mediation meeting […] and I think the tips I picked up last night will help immensely. I hadn’t heard of your charity before but will certainly recommend your workshops to other parents.”
If you’ve known us for a while, you’ll know we’re called Contact. But over the years, we’ve heard from many people that our name doesn’t always make it clear who we are or what we do.
That’s why we’re now thinking about whether a name change could help us better represent the support we offer – and we’d really like to hear what you think through this short questionnaire.
Nothing has been decided yet. We’re just exploring ideas, and we’d love your thoughts on our current name and any suggestions you might have for a new name.
Tell us what you think by Thursday 4 September. Everyone who takes part can choose to be entered into a prize draw to win one of three £50 vouchers as a thank-you. And don’t worry – your answers will be completely anonymous.
The survey is being administered by Spencer Du Bois on behalf of Contact. You don’t need to leave your details unless you want to be entered for the prize draw. If you do, your personal data will only be used for the prize draw and will not be linked to your responses.
As disabled young people approach adulthood, many families want to understand what benefits they’re entitled to.
One of the most important but often misunderstood steps is making a “credits only” claim for new-style Employment and Support Allowance (ESA).
Here we explain what making a credits only claim for ESA means, why it matters, and how it links to future Universal Credit claims. You’ll find this particularly useful if your young person is remaining in full-time education.
What is a “credits only” ESA claim?
A “credits only” claim for ESA allows a young person with a disability or long-term health condition to:
Undergo a Work Capability Assessment (WCA).
Have their capacity for work and work-related activity assessed.
Establish a limited capability for work (LCW) / limited capability for work and work related activity (LCWRA)
Start building National Insurance credits, which count towards future benefits like the State Pension.
It is called a “credits only” claim because while they will starting building National Insurance credits, usually they won’t actually receive ESA payments. (This is because they haven’t worked and paid National Insurance yet).
So why is this important for claiming Universal Credit?
Most young people cannot claim Universal Credit while still in full-time education.
Establishing LCW or LCWRA now can increase your child’s future chances of getting Universal Credit if they remain in education. It will help them in two specific circumstances:
If they remain in full-time non advanced education beyond the 31st August after their 19th birthday. Having established LCWRA should guarantee that they can get Universal Credit despite being in education from the 1st September after they turn 19.
They are treated as having a break in “receiving education”. They should be exempt from the restrictions on claims by students so long as they established LCW or LCWRA at some point prior to their new period “‘”receiving education” startin. (They must also get a qualifying disability benefit such as Personal Indepence Payment).
This is why it’s so important to establish LCWRA early, through a credits-only ESA claim for ESA.
Who can apply?
Your child can make a credits-only ESA claim from age 16, even if they are:
Still in full-time non-advanced education.
Living at home and dependent on you.
Not eligible for Universal Credit yet due to their education status.
NOTE: If your child lacks capacity, you’ll need to apply as their appointee by phone. You cannot do this online.
How to apply
Call ESA on 0800 055 6688, choose option 4 to apply by phone.
Ask to make a “credits only” claim for new-style ESA.
Provide a fit note (sick note) from your child’s GP.
You’ll receive a ESA50 questionnaire to complete and return with any supporting evidence.
You are legally entitled to make a credits-only claim under Regulation 8B(1) of the Social Security (Credits) Regulations 1975. If ESA refuse you, seek advice.
What happens after applying?
You will receive a letter saying your child does not qualify for ESA payments. This is expected.
The DWP should then initiate a Work Capability Assessment. This will the completion of a work capability questionnaire. Your child may also be asked to take part in a consultation with a health professional, either via the telephone or face to face. This process usually takes three-fourth months.
The outcome of this assessment will hopefully be that your child has a limited capability for work (LCW) – or a limited capability for work- and work-related activity (LCWRA).
This decision:
Secures National Insurance credits.
Will be binding on Universal Credit if they claim in future.
If they establish LCWRA rather than LCW, it will also mean they get higher Universal Credit payments.
With the rise of AI-generated answers featuring at the top of internet search results, it would be easy to assume that the information you’re presented with is reliable and up to date.
But tools like Google’s AI Overview often provide generic – and potentially inaccurate – responses. Sometimes AI tools remove important context too. This is especially true when it comes to sensitive or complex topics, which parent carers are often searching for.
In fact, we have already heard from parents that the AI-generated answer they’ve been told comes from Contact does not match the information on our website. We’re concerned that parents relying on AI – without checking the sources carefully – will be getting incorrect information. And this might impact the support they’re hoping to find.
That’s why we encourage parents to come and read our website directly. If you do read AI-generated summaries, check the sources in more detail if you plan to act on the information.
Contact’s information and advice is second to none
Automated tools simply cannot replace the knowledge and empathy of Contact’s team of parent advisers, who write all the information on our website.
No other charity offers the same breadth and depth of trusted information, expert advice and genuine understanding that Contact offers.
Our information and advice for parent carers of disabled children and those with additional needs is:
Accurate and regularly updated.
Reviewed by real experts.
Backed by decades of experience.
Come to Contact for advice and information you can trust.
Government consultations are a useful means of gathering the views and experiences of affected by policy changes.
That’s why we encourage parent carers to take part when they can – and we respond to many consultations as an organisation, too. The voices of parent carers must be heard when the government is making changes to existing laws.
The government is running a series of consultations you might be interested in responding to.
Proposals also include changing Council Tax billing from a 10-month schedule to a 12-month schedule. We think this will help low income families manage costs better.
You can share your views on whether current entitlements give babies and new parents the best start to life together.
Out-of-School settings (OOSS) safeguarding
Finally, the government is seeking views on safeguarding practices in OOSS. This includes providers such as sports and arts clubs, youth groups, holiday camps and faith-based education settings.
A parent is calling on NHS England to revise a policy that bars parents from ordering vital medication for their child when they turn 11 years old.
Under the policy, the NHS App automatically uncouples the parent from their child’s records at this age. Parents must contact the GP surgery so their child can give consent for their parent’s access to continue. This allows parent to make appointments and order medication on their child’s behalf beyond age 11 via the App.
Depending on the GP practice policy, this can be done via a form or email or visit to the surgery. We know of many parent cares resorting to arranging their child’s prescription by paper order forms.
“Another hoop to jump through”
Parent carer Laura Siveter has now launched her petition calling for a policy change. The NHS App prevented her from ordering vital epilepsy medication for her 11-year-old son, who has learning difficulties. More than 35 parents on in the Contact Facebook group shared similar stories or were unaware of the policy.
Contact’s health lead Amanda Elliot said:
“For parents of young people with a health condition or disability, getting medication on time is critical. This is another hoop to jump through when they are already under enormous pressure.
We have asked the NHS to ensure it communicates with families well in advance of the NHS App cutting off access to their child’s record. It should explain clearly what families need to do to continue access.
After hearing from us parent’s feedback, NHS England have said they will work with the NHS App team to address these concerns and improve communication and and guidance.
Our advice to parents
We recommend that parents required to attend their GP surgery to organise proxy consent should also request the practice applies a Reasonable Adjustments Flag to their disabled child’s record. This will flag to GPs their status as their child’s carer.
You can also ask for the practice to add your child to the learning disability register (at any age). This will ensure they are automatically invited for annual health checks from age 14.
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