Christine Membi is a parent to two children and lives with her family in Glasgow. They live with sickle cell disease, as do many other families across the UK.
Sickle cell disease is a very much misunderstood condition that predominantly affects people from African and Caribbean backgrounds. This often that means that the right support is not always available.
Here, Christine tells us more about the condition and how she became involved in setting up the Hope Project to provide support to those suffering with Sickle Cell Disease and their families.
“Sickle Cell Disease (SCD) can affect anyone and could be life threatening. It predominantly affects people from African and Caribbean backgrounds. As such, we have experienced barriers to services, support and health inequality. So, in 2016 I along with just a handful of other families set up The Hope Project Scotland.
We had a noble idea of providing support to families living with SCD. Now we are a pro-active dedicated group, which started in an environment where Sickle Cell was not well known.
We have since grown and now have over 280 registered members across Scotland. Members can connect with each other and access medical information, holistic and social support along with support for their mental health. We also help people with other rare blood disorders.”
Building a supportive community
“We exist to help patients and families in dealing with its complications. We aim to build a community to help ease stress, reduce isolation, loneliness and trauma that’s often caused by the unknown.
“With so many medical appointments ,accessing appropriate childcare and safe travel is a concern for our families. It can often be difficult to find funding for very basic things like heating (an absolute necessity for people living with this condition, knowing that the majority are on very low income and sometime do not get the disability benefit). Funding to keep the group running is a constant challenge especially in recent years.
“The Covid pandemic affected our families immensely. Challenges included accessing medical support, PPE, medicines, cost and risk of travel to hospital, risk of infection on public transport or shopping… Opportunities to speak to someone in the group who could provide some advice, help them get a break, provide practical things like hand sanitiser were essential. We were able to access some funding for Christmas treats too. These were so welcome and uplifting at a time of great difficulty.
“We look after our members’ mental health. This is very important to keep them from having painful crisis. Anxiety and stress trigger these crises and consequently hospital admissions.”
Support from Contact
“We continue to provide information, guidance and parent resources. We run regular awareness-raising days, family activities, support on sleep issues, access to support for parents to build good mental health and to counselling, training for self-esteem and confidence building; awareness raising session on Sickle Cell with professionals and wider public and ultimately empower families and build self-esteem.
And we now have chat group where young people can talk about any concerns they have growing up with SCD along with social, sport and music interests. We have a number of interesting, focussed sessions including a recent cooking project providing the skills and culinary flavours of African and Caribbean food. This was a joyous family event – if slightly competitive!
“Contact has worked with us to help build our community of support from the very beginning. They’ve provided wider resources, support in hospital, family finance advice and information to our families in person. They have helped us to build resilience as a group and to influence policy and legislation to improve the lives of all families with sickle cell. Contact understands who we are, and that matters.
“The world has changed since we set up our group. It can at times feel a bit scary, but we always pull together and look forward to the joy our families bring us every day in every way.”
Join The Hope Project on Saturday 8 November for a traditional family day out
Taking place at Alhambra House in Glasgow from 2-6pm, the Hope Project’s fun day on 8 November is for all the family to learn and share in the cultural diversity of families through traditional dress, food, music and great conversation.
You’ll be able to meet Contact’s Scotland team there too!
At Contact, we want to make sure families of disabled children and those with additional needs can access the support they need, wherever they live in the UK.
We are currently reviewing how parents access services in Scotland, Wales, and Northern Ireland. We want to understand what works, what could be improved, and whether parents feel their voices are heard and understood enough in policy making. Your experience really matters and will help shape our work.
We are asking parent carers to take a short survey (5–10 minutes, mostly tick-box or multiple-choice questions) about:
Where you go for advice and support.
What support you need or would like to see.
How well informed you feel about policies and rights for families with disabled children in your country.
How well you think politicians and decision makers understand the challenges families face.
What more could be done to make sure parent voices are heard and acted on.
The survey is anonymous. Every response helps us push for better support and stronger parent carer voices in Scotland, Wales, and Northern Ireland.
If you care for a child or young person with disabilities or additional needs and live in Scotland, Wales, or Northern Ireland, we would love to hear from you.
Please choose the survey link for your nation below:
A direct payment allows families to buy care and support services themselves, But the current law is vague about whether payments must be sufficient, leaving many families out of pocket or unable to recruit paid carers.
Many families tell Contact that direct payments are not enough to attract paid carers. Parents are forced to top up wages from their own pockets or struggle on without help and return unspent funds to the council.
What did the Law Commission find?
Direct payments offer flexibility, but they’re not working effectively, and disabled children’s needs are going unmet. The commission found:
Payments are often too low to secure the support a child needs.
Families struggle to recruit carers due to workforce shortages
Local authorities don’t always review payments or step in when recruitment problems arise
Parents face complex responsibilities like managing sick pay, holiday pay, and liability insurance
What does the Law Commission recommend?
The law currently says direct payments should be “adequate,” but government guidance only requires them to be “reasonable” which leads to inconsistency and unfairness.
The commission recommends:
Reforming Section 17A of the Children Act 1989 to guarantee that direct payments are sufficient to meet the actual costs of providing care to meet a disabled child’s assessed needs.
Introducing new statutory guidance so payments are consistent across the country and reflect real-world costs.
Local authorities should not be required to make a direct payment if it would have an adverse impact on other care services they provide for disabled children or if securing the provision is not an efficient use of the authority’s resources.
What other reforms is the Law Commission recommending to fix disabled children’s social care?
A new legal framework.
National eligibility criteria.
New legal duties to assess and meet the needs of disabled children.
This webinar is for families in England and Wales only.
At Contact, we understand that as a parent carer, planning for your child’s financial future can feel overwhelming.
Families often tell us that they are worried about how being left money might negatively impact their child’s entitlement to means-tested benefits and social care support. However, this can be daunting and difficult to know where to start.
To bring some much needed clarity, Contact is partnering with Renaissance Legal to offer a free one hour webinar about planning for the future of a disabled loved one.
When is the webinar?
Date: Thursday 23 October 2025
Time: 10am – 11am
Location: Online (a Zoom link will be sent when you).
Renaissance Legal’s leading and trusted expert Philip Warford will explain how to safeguard means-tested benefits and how to provide financial security for your disabled loved one as well as the rest of the family.
The webinar will cover:
The importance of writing a Will and Letter of Wishes.
Protecting means-tested benefits and support packages through trusts.
The different types of trusts.
Contact’s offer and services.
A Q&A session at the end.
These webinars are always really popular due to Philip’s accessible style of presenting. We encourage you to book your place today as spaces are limited.
A webinar is a live presentation via the internet. You will need a tablet, smartphone or computer.
There is no required audience participation (unless you want to ask a question in the chat) and cameras will be off, so you can relax in the comfort of your own home.
October is Black History Month and the theme this year is ‘Standing Firm in Power and Pride.
For over 20 years, Black History Month has brought people together to celebrate culture, history and achievements of Black and minority ethnic communities – remembering the past and focusing on the future.
There are lots of ways for you to get involved this year. Take a look at the excellent Black History Month website for articles, profile and history articles and a calendar of events taking place around the country.
Contact is here for all families
Anna Bird, Contact’s CEO says: “At Contact becoming an anti-racist organisation is a priority and we are actively striving for greater equity, diversity and inclusion for our families.
“This is more important than ever, as racism and harmful political talk about immigration are on the rise. There’s a duty on all of us at Contact to stand with the families we support, speak up when we see unfair treatment, and make sure Contact is a place where everyone feels supported—no matter their race, religion, or background.”
Shining a light on Black children with Down Syndrome
And if you’re in London why not check out the lights at Piccadilly Circus on 6 October when to celebrate both Black History and Down Syndrome Awareness Month, stories of families supported by the Black Down Syndrome Project will illuminate the Piccadilly Circus and highlight the work of world re-knowned photographer, Misan Harriman’s work celebrating Black children with Down syndrome.
Anna also called for teachers to receive a comprehensive package of training to teach children with SEND. And she said that schools must have access to specialist support like education psychologists and speech and language therapists.
Anna acknowledged that the government will need to commit to up-front investment, but explained that the economic benefits – not to mention the value to disabled children and their families – far outweigh the costs.
“The government has been out speaking to parents throughout the summer, and we know that parents will have been saying the same things to them. We’re asking for no dilution of rights and in fact for every child to have the legal guarantee that support will be there when they need it.”
The new youth guarantee initiative hopes to support young people into regular, long-term employment.
Government must consider barriers young disabled people face
Una Summerson, Head of Policy at Contact, says:
“We welcome the government’s drive to reduce youth unemployment. It is right to ensure every young people has access to education, training or a job . However, we are worried that the government hasn’t fully considered the barriers disabled young people face.
“We are keen to understand more how the scheme will work for this group. Young people whose needs are too high to allow them to access either training or employment, but who may be capable of carrying out some tasks, will be left with a greatly-reduced Universal Credit figure if the government goes ahead with plans to remove the health element for under 22s.
“There will always be some young people for whom employment isn’t possible, particularly with lack of funding and support for special educational needs (SEN). Provision needs to be made for young people in this situation. Retaining entitlement to the health element in Universal Credit for young people is an effective way of achieving this. The Pathway to Work Green Paper acknowledges that the government needs to ‘consider what special provisions need to be put in place for those young people where engagement with the youth guarantee is not a realistic prospect’. It hasn’t yet made clear what form these ‘special provisions’ will take or which young people will be eligible.
“Contact does not accept that there is any justification for slashing financial support for any young disabled person aged under 22, regardless of the extent that they can or cannot engage with the youth guarantee.”
Danielle, a parent carer from Essex, shares her twins’ journey through the special educational needs and disabilities (SEND) system and what she told Minister Gould must change for families like hers.
My twins, Teddy and Barney, were born 14 weeks premature. They’ve had a mountain to climb from day one, with multiple diagnoses including Autism, ADHD and developmental delay. Despite everything, they’ve made remarkable progress. They’re bright, capable boys with huge academic potential – but also significant communication, social, emotional and sensory needs.
With education, health and care (EHC) plans and full 1:1 support in place, they thrived in their small village mainstream school. We felt hopeful about their futures. But the move to secondary school turned into a nightmare.
Dehumanising, isolating, and overwhelming appeal process
We contacted 20 schools before finding two specialist provisions we felt could meet their complex needs while still giving them opportunities to access a differentiated mainstream curriculum. We made our wishes clear to the local authority as early as Year 5. But months later, the local authority named a mainstream school that had already expressed grave concerns about being able to keep Teddy and Barney safe.
Our requests for meetings and assessments were ignored. Mediation was ignored. In the end, we were forced into an exhausting appeal process, fighting two cases at once while caring for the boys and trying to keep working. The process felt utterly dehumanising, isolating, and overwhelming. No parent should ever have to go through it.
Thankfully though, through working closely with Teddy and Barney’s Headteacher and classroom team at their primary school, engaging with the wonderfully supportive SENCO at the ‘named’ mainstream secondary school, working with our personally-funded educational psychologist, valuable advice from SENDIASS, personally funded legal training from IPSEA, and with the overwhelming support of the community of friends in related fields willing to provide evidence statements and advice, we made it through with a positive outcome. But so many families aren’t as fortunate.
I know children right now who are still at home, without education, because of systemic failures.
Change is possible
And sadly, Teddy and Barney’s story is not unique. Families are left chasing answers, ignored, and treated as adversaries rather than partners. At Bright Futures Essex, the parent-led support group I run, we hear the same frustrations again and again. Parents don’t want a fight – they want to be listened to, given honest advice, and supported with compassion.
From listening to families, and teachers, we have identified the following things that must change:
Collaboration and Communication – Parents and schools need honest, timely communication and a culture of trust. We should be working with the local authority, not battling against it.
Teacher Training – Teachers need practical, specific training on Autism, ADHD, PDA, language delay and trauma-informed strategies. Without this, “inclusion” is just a word on paper.
Attendance – The one-size-fits-all approach to attendance does not work. We need to stop rewarding attendance as it is an absolute lottery and has nothing to do with ability or attitudes to learning. This is a divisive strategy and bares little connection to effort or attainment. We are approaching it all wrong. By starting with the goal of 100% attendance we are setting young people up to fail. We should be looking at why they are not attending school and how we can make school feel safe and accessible.
The single biggest change that could make a real difference would be the reintroduction of the Specialist Teaching Service. Specialist teachers are experts who work directly with children, support teachers, and guide families with real strategies. They could bridge the gap while families wait for assessments, and give schools the tools they need to support children immediately.
Having a voice at the highest level
On Monday 15 September, I was honoured to meet Minister Gould after the SEND Rally. Thank you to Contact for helping give me this platform.
She listened with empathy to my experiences and other SEND families, and later in the Westminster Hall debate, she committed to working with families going forward. That gave us a glimmer of hope — but councils must step up right now.
Our children deserve a system that meets their needs, values their potential, and gives them the futures they deserve.
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.
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