We are inviting parents to join us for a special webinar via Zoom next Thursday 13th November, 10-11.15 am. We’ll be looking in detail at how the cut may impact disabled parent carers.
What is the cut to the health element?
The health element cut is scheduled to happen on 6 April 2026. It will see the health element drop from £423 to £217 a month for some new claimants.
This cut won’t affect existing recipients of the health element. However, to be treated as an existing claimant, it is not enough to simply be getting Universal Credit before 6 April 2026. Your Universal Credit also needs to include an entitlement to the health element that started before that date.
This means that some parents will need to take action well before April. There is a qualifying period of three-four months between submitting fit notes and entitlement to the health element beginning.
For example, a parent carer on Universal Credit with their own health problems may not have submitted fit notes before. If they would like to be assessed for the health element, it will be in their interests to do so under the existing rules. This ensures that they will be protected and receive higher payments of the health element. To guarantee that they are treated as an existing claimant, they cannot wait until April; they would need to submit fit notes before 6 December!
What will our webinar cover?
The webinar will look at:
What the health element is and how you qualify for it.
Which groups of new claimants will be protected from the cut in the health element.
The steps disabled parent carers can take to ensure they are protected as an existing claimant, and the dates they need to do this by.
The webinar will be of particular interest to the following groups:
Parent carers on Universal Credit who are themselves disabled but who haven’t yet submitted fit notes and asked to be treated as having a limited capability for work.
Parent carers or young disabled people already on Universal Credit and assessed as having limited capability for work only, but whose health has deteriorated and who think they may now also have a limited capability for work-related activity.
Parents of young disabled people who are not prevented from claiming Universal Credit as a student but who have not yet got round to making a claim. For example, young people who are not in education, or those on a part-time course, or those who have passed the 31 August after their 19th birthday and who remain in full-time non-advanced education.
Please note that this webinar will not look in detail at the government’s separate proposal to scrap the health element altogether for under 22s. This is because the government has not yet responded to the consultation it carried out into this proposal.
This webinar will be presented by benefits advisers from Contact’s Family Finance team.
Sign up now!
To find out more about this webinar and to sign up, visit our Eventbrite page. After registering, you will receive a confirmation email containing information about joining the webinar.
A webinar is a presentation live on the internet. You will be able to hear the presentation live, follow the slides and submit questions for the presenters to answer. You will need a home computer, laptop, tablet or smart phone.
Can’t make 13th November?
We will post a recording of the webinar on our webpages, shortly after the event has taken place.
We’re thrilled to announce the 18 incredible finalists in our Contact Awards, celebrating the countless things UK families do when caring for disabled children.
Over 400 nominations poured in from families, friends, and supporters, giving our judges an almost impossible task of narrowing the list down.
Thank you to everyone who nominated. From dedicated parent carers to supportive siblings, and campaigners changing lives in their communities, this year’s finalists represent the strength, compassion and resilience that fuels families of disabled children every single day.
Our Contact Award categories and finalists are…
Parent Carer Award
Recognising the phenomenal efforts of parent carers who ensure their children are included in everyday life. This award is in memory of Joseph Hockley Wright, who helped transform the lives of thousands of parent carers across the UK through his generous support for Contact.
Our finalists:
Cath Peaty
Lynsey McLuckie
Michelle Redfarn
Change Maker Award
For individuals, families or parent groups who’ve led campaigns or initiatives to improve the lives of others.
Our finalists:
Warrington Parent Carer Forum.
Laura Brown.
Alma White.
Watch our awards video
Proudest Moment Award
Celebrating the powerful, joyful moments when children overcome challenges that make their families beam with pride.
Our finalists:
Harvey Doak.
Lee Jame and Stuart Deadman.
Stephen Kelly.
Friendship First Award
Shining a light on the special friends who support parent carers.
Our finalists:
Louise Orange.
Sends4Dads.
Linda Dennison.
Grandparent Award
Honouring the quiet yet profound support that grandparents bring to the lives of disabled children and their families.
Chris and Jeff Morton.
Yvonne Evans.
Emma Steel.
Sibling Award
Celebrating brothers and sisters who bring love, laughter, and essential help to their families.
Raphael Chiwandire.
Tabitha Foxwell.
Violet Craze.
Our Award ceremony
Anna Bird, CEO at Contact says: “Congratulations to all our finalists and to everyone who was nominated for one of our Contact Awards this year. Choosing just 18 finalists from over 400 nominations was extremely difficult!
“I’m looking forward to celebrating with all our finalists in London later this month, but the Contact awards are about much more than accolades – they’re about honouring love, endurance, and community. They remind us that behind every single nomination we received is a story of quiet strength and everyday heroism – something we’re proud to shine a spotlight on.”
Contact’s Awards ceremony on Monday, 24 November will take place at the House of Lords in London.
For families of young people who lack mental capacity, the process of accessing their savings at 18 often requires an application to the Court of Protection (COP) in England and Wales. The process in Scotland is simpler, using the Access to Funds scheme.
We want the government to back a simplified process already used by some Child Trust Fund providers.
It is important to note that for young people with other assets, or medical negligence settlements, a Deputyship order via the Court of Protection is likely to be the appropriate route (or alternatives in Scotland).
Why a flowchart?
You have been telling us that even knowing where to start in this process is a challenge. We hope that our flowchart will help provide some much needed guidance.
It is designed as an essential ‘first steps’ tool, providing a clear, step-by-step path to help you work out what to do next.
We also want to reach as many families as possible and encourage them to take action before their young person turns 18. Before this age, the parent still controls the account.
However, if your young person is now 18 or over, please don’t despair! We have seen families able to help their child access their savings without the need for a lengthy court process.
Who is the flowchart for?
Families in England, Wales, Scotland and Northern Ireland can use the flowchart.
It is not designed to replace professional legal or financial advice.
We’d like to say a HUGE thank you to dads, Nick and Martin — the popular social media influencers behind The Smithy Family and Martin & Bex — for braving the notoriously tough Three Peaks Challenge last weekend in aid of Contact and raising a whopping £27,800!
From 24th–26th October, the pair climbed Ben Nevis, Scafell Pike and Snowdon to raise awareness and vital funds for families with disabled children. Halfway through their challenge, their friend, Jay joined the climb. Jay helped support and fuel Nick and Martin’s passion and determination to complete the challenge – and they did!
“My whole life I’ve been told I will never be able to accomplish much. But throughout my life I have proven that with true grit and determination, anything can be accomplished — even with special needs. There is no mountain that can’t be climbed, there are no barriers that can’t be broken.
“Martin and I have completed the Three Peaks Challenge without any training to prove to people that you can do anything you set your mind on. Even if the odds are stacked against you. We chose the charity Contact because we believe they make a difference. With their help, we can make a change to the way the school system works with kids with special educational needs.
“The whole system needs an overhaul, especially education, health and care (EHC) plans. We are delighted to have raised such a significant amount of money for them.”
Nick and Martin’s extraordinary commitment, strength, heart, and determination have inspired us all – thank you so much!
Could you take on a challenge for Contact?
Would you like to take on a challenge in aid of Contact?
No matter where you live or what your skills are, there’s something for everyone! Take a look at upcoming fundraising events you could join.
Over half of the most sick and disabled children in England referred for NHS-funded support have been rejected as revealed by Sky News today.
This support, known as continuing care, provides tailored care packages for children who need support to breathe, eat, move and manage their pain.
Of the 99,000 children in England living with a life limiting or life-threatening condition, just 4% (4,402 children and young people) get continuing care funding. Despite the number of children living with a life-limiting condition rising by 205%, the overall spend for continuing care by Integrated Care Boards (ICBs) reduced.
Sign our petition to demand urgent reform of children’s continuing care
Contact made freedom of information (FOI) requests to all 42 ICBs in England about their funding of continuing care packages. Currently ICBs do not have to publish this information for children.
Anna Bird, chief executive at disability charity Contact, said:
“The number of children living with life-threatening conditions has risen dramatically. But where is the support for them when they get home from hospital?
“There is an incredibly high bar to qualify for continuing care. Those who do get it live in constant fear it will be taken away. Children have weaker legal protections than adults who need health funded support.
“This leads to a postcode lottery of care, and many families are left to do the most complex nursing procedures at home alone, such as changing a tracheostomy, suctioning, dealing with multiple seizures, SATS monitoring and administering rescue medication.”
53% of families referred for continuing care for their child were turned down. To apply, a family must be referred by a nurse, doctor, social worker or teacher.
Overall spending on children’s continuing care went down by £2.9 million, despite massive inflation in this period.
Some ICBs spent significantly more on care packages than others: The average package across all ICBs is £79,000. In Gloucestershire the average spend per care package was £159,434 in 2024, while in Birmingham it was £15,156.
Some ICBs fund more care packages per child population. NHS Mid and South Essex spent 22 times more on continuing care for children than NHS Hertfordshire and West Essex despite having fewer children and young people living in their area. Children in Mid and South Essex are over 16 times more likely to receive a continuing care package than those in Hertfordshire and West Essex.
Without this support, needs escalate for the child and family. Families who do qualify live in constant fear of their child’s care package being reduced or withdrawn despite their health not changing or even increasing. Many families describe their child’s annual reviews as traumatising.
Families also have great difficulty finding nursing staff to care for their child. Some families receive as little as £13 per hour to pay nurses helping their child live – just 79p above the National Living Wage.
Contact is calling for reform of children’s continuing care
Anna Bird added: “It is not sustainable to be up 40 times a night for years on end. Some families break, with children at risk of going into residential care and parents left in poor physical and mental health.
“It’s imperative the government gives attention to this small but vulnerable group and improves the continuing care system. This could be done by improving oversight, strengthening the legal framework and making it more compassionate.”
Contact is calling for:
The law around children’s continuing care to be strengthened and brought in line with the adult system.
ICBs to be made more accountable by introducing a legal duty for ICBs and local authorities to work together. There should also be a legal duty for ICBs to report data on assessments, decisions, appeals, and outcomes to support transparency and service improvement.
A legal right to independent advocacy and a formal appeals process with time limits to be established and external review to ensure already overburdened families can navigate the system and challenge decisions.
Sign our petition to demand urgent reform of children’s continuing care
When the petition reaches 1,000 signatures, we will hand it into the Department for Health, asking the Secretary of State for Health and Social Care, Wes Streeting MP, to meet with families.
“I just want some help as it’s not sustainable”
Becci Tobin, mum to Keir aged six who has the rare genetic condition GABRB3, said:
“We have been trying to get continuing care for Keir for three years. He is under palliative, gastroenterology and neurology consultants at Birmingham Children’s Hospital and requires 24 hour care, but we were told he doesn’t meet the criteria.
“Keir can have 3-4 seizures a night and is on morphine. So I sleep downstairs with Keir so he doesn’t disturb his siblings and dad, and I have to use a pump, nebuliser, suction, peg feeding and administer medication. I was a head of department at school but had to give that up and now work at a performing arts group as much as I can. I just want some help as it’s not sustainable.”
Sarah’s son Luke is 3 and has hypoplastic left heart syndrome and complex health needs. He requires 24/7 care. When he left hospital as a baby, he was given a continuing care package. He needs help with breathing and has to be fed by a tube every hour. Last year the continuing care package was reviewed and the ICB tried to take it away. Sarah had to appeal and said the experience traumatised her and she has never really recovered from the stress.
The paper is broad in its ambition to reform further education. This is most notable in the introduction of new Vocational Qualifications (V Levels); qualifications at level 2; and reformed English and Maths at level 1, as well as the introduction of a skills passport
The main headlines relating to post-16 students with SEND include:
The government will invest up to £12 million for supported internships alongside funding expert advice via free one-to-one consultation for all learners with SEND.
Mental Health Support Teams will be expanded to support learners most at risk of becoming not in education or employment.
The white paper does not provide detailed policies on transport for SEND learners. It does acknowledge the importance of supporting learners with SEND to access education and training. This includes considering the provision of transport assistance to ensure that these learners can participate fully in post-16 education and training.
Neurodivergent and disabled young people and their families from underrepresented communities have less access to healthcare services.
They have poorer health and life expectancy as a result, and many of these young people and families are not involved in health care decision making and are less heard within research.
We are also joined by Donna Phipps, Chair of the Liverpool Parents and Carers Forum (LivPac), and one of the parent carers involved in the research. Donna tells us about her lived experience as a parent of a neurodivergent young man, her work to ensure local health services respond to families’ needs, and offers some practical advice for parents.
Mary told us that the research findings were powerful and, at times, hard to hear. Many families said accessing healthcare was stressful and sometimes even traumatic. Parents spoke of difficulties in:
Booking appointments.
Communicating with professionals.
Feeling judged or discriminated against.
Repeatedly having to retell their stories.
Some children and young people faced overwhelming hospital environments or physical access barriers. For example, one wheelchair user had to be carried into a GP surgery because there was no ramp.
Mary explained how cultural misunderstandings and lack of reasonable adjustments often compounded these barriers.
“Interacting with services was sometimes described as causing trauma”
There were also positive examples of professionals who listened, adapted, and created calm, supportive spaces where families felt seen and heard.
As Chair of the Liverpool Parents and Carers Forum, Donna has gained valuable insight into the challenges families face when accessing healthcare. As a parent carer of a young person, she combines this understanding with her personal experience to offer advice to any parents listening who face similar issues.
She told us:
Share your needs. Let professionals know if you or your child are neurodivergent, disabled, or need reasonable adjustments.
Find out what’s available. You can ask for interpreters or sensory adjustments, and check if there is a Learning Disability (LD) Nurse available.
Prepare in advance. Write down your key questions and bring all relevant paperwork to appointments.
Take care of yourself. Think about what you need to make the appointment go well, not just your child.
Ask for clarity. If you don’t understand something, ask professionals to explain or repeat it.
Find your local Parent Carer Forum. They can help you connect with others, share experiences, and raise issues collectively.
Use community support. Follow your local Parent Carer Forum or Contact’s Facebook group for advice and updates.
Ways healthcare professionals can better support families
In the episode, we asked Mary and Donna what healthcare professionals can do to help reduce barriers for the underrepresented communities featured in the research. Mary acknowledged that:
“Often we noted that systems were falling short and that really kind, compassionate staff were having to routearound the systems that created barriers”
But if possible, practitioners can strive to do the following where possible:
Start with compassion. Small acts of kindness and humanity make a big difference to anxious families.
Offer reasonable adjustments. Ask, “What would help make this appointment go well for you and your child?”
Read the notes. Avoid making families retell their story repeatedly – it can be exhausting and retraumatising.
Use clear communication. Avoid jargon and acronyms – use simple language and visuals where possible.
Provide interpreters. Don’t rely on family members to translate sensitive medical information.
Check accessibility – ensure physical access needs are met – ramps, quiet spaces, sensory rooms.
Work with community partners – collaborate with trusted local organisations who know and support these families.
At Contact, we believe every family deserves to be heard and supported when it comes to their child’s healthcare. Through projects like Access to Healthcare North West and our By Your Side hospital support service, we’re working to amplify parent voices, challenge inequalities, and help shape services that truly meet families’ needs.
Please note, the views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Where can I listen?
You can subscribe to our podcast on your platform of choice:
You can also find our podcast episodes on our Youtube channel, or listen below.
The project featured in the episode was grant-funded by the National Institute for Health and Care Research. Based in the North West of England, it was collaboratively developed between Contact, Alder Hey Children’s NHS Trust, Edge Hill University and the North West National Network of Parent Carer Forums (NW NNPCF).
A lot of the content from the hub comes from our now-closed microsite of the same name. Launched in 2019, Talking about Tomorrow was put together with parent carers to help other families with teenage disabled children.
We’ve rebuilt the microsite at contact.org.uk, covering all the same key topics you need to know as your child grows up, including:
Susan Walls, Contact’s Head of Programmes in Scotland, Northern Ireland and Wales, says:
“Our Talking about Tomorrow microsite has been a popular resource for families in Scotland since it launched. Putting it together was a co-productive process, in which parent carers told us what kind of information they need as their child moves through their teenage years.
“As website technology has developed, we’ve decided to move all this great content to our parent site, contact.org.uk, which has improved functionality and accessibility features. We’re delighted to give Talking about Tomorrow a new home alongside all our highly-respected advice for families across the UK.”
The Department for Education has confirmed a delay to the publication of the Schools White Paper for England, which is now expected early next year, to allow for a further period of co-creation with families, educators, and experts.
The government emphasised the need to take time to ‘get it right’ and ensure reforms are shaped by those with lived experience of the SEND system in England.
Responding to the announcement Contact’s CEO, Anna Bird said:
“While further delays to the publication of the White Paper and SEND reform plans will be disappointing news to many parent carers we support, it’s great to hear the government is committed to co-creating its reforms with parents and young people.
“Meaningful engagement with parents, children and young people is the key to doing just that. Contact looks forward to helping the government hear what parent carers want and need as they work towards the publication of the White Paper.”
The government says it remains committed to long-term SEND reform and to strengthen accountability for inclusion.
If you are the parent or carer of a disabled 16-19 year old in England who gets (or needs) transport to school and college, then read on.
At 16, things can change. As transport provision is left up to local authorities, we know that more and more young people are left without their usual school bus or taxi. This can have a real impact on families.
So, we’re running a survey to find out how your young person’s transport is working right now. It will take you less than five minutes to complete.
Does it improve outcomes? Is it value for money? How best to manage rising demand?
The committee is asking for evidence to help them understand the issues families are facing. This will help them make recommendations for change.
The findings will form part of the evidence we submit to the committee, so your experiences will be vital in showing MPs the need to improve transport provision.
At Contact, when we speak on your behalf, we want to make sure we raise issues that matter to you.
By sharing your experiences, you are highlighting the problems that your family (and many others like yours) are facing. That will help us engage with decision-makers with strong evidence and an accurate picture of day-to-day life for families.
And that will help us, together, make the case for change.
Next weekend, popular TikTok dads Nick and Martin from The Smithy Family and Martin & Bex will be joining forces to take on the Three Peaks Challenge in aid of Contact
A deeply personal challenge
For Nick, this challenge began as something deeply personal. Like many parents of children with special educational needs (SEN), Nick and his family have faced challenges navigating a system that often leaves families feeling unheard and unsupported.
“This started as something deeply personal for me and my family. But the more I saw how broken the system is, the more I realised it’s not just our story. Too many families are fighting the same fight in silence.
“When I was researching this, I came across an article from Contact that completely stopped me in my tracks. It said that only 9% of pupils are receiving speech, language and communication support — a fundamental for any child in school. It made me wonder what the numbers must look like for children with more complex needs.
“Contact are campaigning to change that and doing everything they can to support families like ours. That’s exactly why we’re proud to be supporting them. Taking on the Three Peaks is our way of turning frustration into action and showing that real change starts when ordinary people stand up and say enough is enough.”
Contact are doing real, hands-on work to help families
Nick’s story struck a chord with his close friend Martin, who didn’t hesitate to join him in the challenge.
“When I saw what Nick and his family were going through, I couldn’t just watch from the sidelines. This challenge isn’t just about climbing mountains. It’s about standing shoulder to shoulder with a friend, raising awareness, and helping to make life fairer for families who need support.
“We chose Contact because they’re doing real, hands-on work to help families with children who have SEND. If we can help shine a light on that, and inspire even a small bit of change, it’ll all be worth it.”
Together, Nick and Martin will be climbing the highest mountains in Scotland, England, and Wales all over one weekend. It’s a test of endurance, strength, and spirit. But for The Smithy Family Team, every step represents hope for families across the UK who deserve better support.
Can you support the Smithy Family Team?
The team are calling on friends, family, and supporters to donate, share their story, and cheer them on as they take on this incredible challenge for Contact.
We are supporting a parent-led campaign to help disabled children access their savings. Currently, 80,000 disabled young people in England & Wales risk losing £210 million. A difficult and costly process means many are unable to access the savings held in their Child Trust Fund.
In this latest Your Voice, parent carer Sapna and Nilesh explains how hearing the stories of other parents in the same situation helped unlock their daughter Jia’s savings.
A complicated process with up-front fees
We are proud parents to Jia. Jia is 20 with a rare genetic condition, resulting in complex needs including epilepsy, respiratory issues and global developmental delay. We also have two other younger children. Like many parents with disabled children, we diligently saved hard for Jia using the government-appointed Child Trust Fund (CTF).
We started to hear that gaining access to Jia’s CTF might not be straightforward, due to Jia lacking mental capacity. When Jia was 16 we went to our provider Nationwide , who informed us we’d be able to access her savings via the Court of Protection at 18. We revisited then and were told to “do a Court of Protection form”. We very quickly realised that this was not just a simple form! It was a really complicated process, which required us to find medical professionals to fill in paperwork and pay fees up front. We also didn’t want full Deputyship as Jia has no other assets. Sadly, we struggled to find suitable legal advice, and those that could help us quoted £2.5k+.
Having to repeat our story takes its toll
Over the next few months, we talked to friends in similar positions. We asked various practitioners in Jia’s life, such as those visiting from Preparing for Adulthood. Many also didn’t know what to to do. Two more visits to the Building Society with mountains of paperwork (proof of Appointee, PIP, identity etc) followed, each time with Jia and her siblings. Each visit took 1.5 hours, with Jia experiencing multiple seizures during this time.
The first visit we were told that the Court of Protection was the only route and sent away. On our second visit, we had even more paperwork evidence (care plans, paperwork from adult services). We were optimistic there must be another way. This time the Building Society rang their special support team. But we were ultimately sent away yet again with advice to speak to our local council for help. Spoiler alert: they couldn’t.
Like many families, day-to-day we try and go about our lives without thinking of every roller coaster moment that has led us to this point. But when we have to repeatedly tell our story, it really takes its toll. Each conversation leaves you deflated. At this point we gave up, with the process taking time and energy that we didn’t have. Over £10,000 in savings for Jia was just sat there but we couldn’t see a way through.
Sapna, Jia and Nilesh Patel
A turning point
Jia started college, and through conversation with another family, and a different CTF provider, we began researching our options again. This time we came across Contact’s website and then Andrew Turner’s campaign on LinkedIn. This was a turning point, making us realise we were not the only ones going through this and there was momentum to effect change! We also read about some providers releasing funds through the ‘Industry Process’. This uses the Appointee Scheme and means that families were not needing to get Deputyship.
This led to us discovering the Unlock Our Savings Facebook group, run by Maria at Contact and Andrew Turner. We began discovering the journeys of other families and learning from their experiences. We watched other families affected by the issue, speaking out on BBC Breakfast and Moneybox, including Contact Changemakers Claire and Finley. One of the families featured had a Child Trust Fund with Jia’s provider Nationwide. They talked though their experience of accessing their child’s savings. This made us realise that it was possible without going through the Court of Protection.
The phone call we hadn’t dare expect
We headed back to Nationwide, armed with BBC video clips and details from the Facebook group. We met with the Branch Manager, who worked with us to open a case with the special support team on our behalf. This time, we gained some traction. After all, if it was possible to do this for another young person, then why not Jia? After reviewing all of our evidence, some further questions and signing an indemnity form, our case was taken to panel. A week later, came the phone call that we hadn’t dare expect – the Building Society had agreed to release all of Jia’s savings based on the evidence that we had provided. The money was transferred to our account that same afternoon! The relief was overwhelming and took a good few days to sink in. It was one less fight we would have to fight.
We want to share our story to give hope to others. Talking about money can be taboo, but it was through others generously sharing their experiences that we have been able to help Jia access her savings. We can now use that money for what we always intended – to enhance Jia’s life such as upgrading her bathroom.
When we found the Unlock Our Savings campaign, we were in a pretty dark place. The campaign gave us a community and the realisation that we were not alone. There were others actively trying to make this situation better for families like ours.
Our message to the government
Our message to the government is that it was Labour that originally created Child Trust Funds. With that comes the responsibility for making sure that all disabled young people can access their savings. We ask you to finally make this a high priority and fix this urgently for families like ours.
Thanks to everyone who has been involved in our brand refresh project so far including taking part in focus groups, workshops and surveys. One of the things we are now exploring is a new charity name.
Research we carried out with parent carers and other supporters told us that 70% think it’s time for a name change.
So with your help we’ve got a short list of 3 names plus our current name, and we’d love you to help us make the right choice.
Please take a few minutes to complete our short survey. We’re asking for your thoughts on the name only – you’ll see a sample strapline alongside each name just to show how it could look (the final wording of the strapline will be decided later).
Omo Idegun, a parent carer who has worked with our Wales team, shares her experience of setting up Wrexham Africa Community CIC to help turn loneliness into belonging.
“I’m a single parent living in Wrexham, raising two incredible children: my daughter, a dedicated young carer and my son who is autistic. Our journey has been shaped by love, advocacy, and the belief that community makes us stronger.
“My connection with Contact began at a pilot consultation in Wrexham, funded by Awards for All. I spoke passionately about the importance of parent support groups, how they must uplift every member, not just a chosen few. That moment sparked deeper involvement: I joined the Wales Parents Steering Group.
“In 2022, I travelled to Cardiff with my children to attend Contact’s Celebration Day and carers’ consultation ahead of their successful three-year National Lottery bid. It was a huge experience, especially for my son, but we made it. I stayed calm and planned carefully, knowing how much that helps him feel safe. I even recorded a short video reflecting on the event, which Contact used in their bid submission. Later that day, we joined others at the theatre to watch Sister Act. It was brilliant, joyful, uplifting, and unforgettable.
“In 2020, I founded Wrexham Africa Community CIC,a group dedicated to celebrating African culture, building connections, and supporting one another through events, networking, and heritage. I saw a gap in support and celebration for Africans living in Wrexham and surrounding areas. These projects began with a simple but powerful idea:
Every voice should be heard. Every culture should be celebrated.
“Through Wrexham Africa Community, we’ve helped turn loneliness into belonging. We’ve created a space where African voices are not just heard, they’re honoured. We’ve supported newcomers, empowered young people, and built bridges across communities.
“In 2024, with support from Wrexham2029, City of Culture funding, Africa Oyé, and Wrexfest, we launched our pilot music festival: AfroFiesta, a vibrant celebration of African and Caribbean culture. Afro Fiesta is more than a festival. It’s a stage for learning, connection, and joy. We’ve brought together hundreds, even thousands of people to experience music, dance, food, and stories from across the diaspora. What started as a small idea has grown into a movement that’s helping Wrexham become more diverse, lively, and united.
“This year, we proudly hosted the second edition of Afro Fiesta. And we’re just getting started!”
Currently local authorities can “devise their own eligibility criteria” depending on the financial resources they have. This is in stark contrast with adult social care, where local authorities must follow national eligibility criteria.
One parent in our social care focus group turned down for support told us that their local authority tightened the criteria after the family lodged a complaint. Others were told their child needed to have more than one disability to qualify for support.
The Law Commission’s own research involving 104 local authorities found 14 had no publicly available eligibility criteria. Of the remaining 90 local authorities, “no two sets of criteria were the same”. Others had potentially discriminatory criteria that excluded children with specific conditions or disabilities like autism.
What does the Law Commission recommend?
The Law Commission report recommends that the government:
Reforms the law to create a single duty to meet the social care needs of disabled children, subject to national eligibility criteria.
Does further work to evaluate the likely impact of the eligibility criteria and what the criteria should be.
Involve authorities, families of disabled children and those representing their interests.
Publishes new statutory guidance as an interim while the work is carried out, which states that local authorities must “have regard to” when drafting their own local criteria.
We believe families should be central to any work carried out to agree eligibility criteria for disabled children’s social care and when developing new statutory guidance. This work needs to start now.
What happens next?
The government has until March 2026 to provide an initial response to the Law Commission recommendations and a further six months to provide a detailed response.
Contact has welcomed all 42 of the Law Commission’s recommendations.
We are urging parents to help us Spark a Fairer future for disabled children.
In this article, our campaigns and engagement lead Maria explains what you can do to take part in our campaign work – whatever time you have to give.
You have a million things running through your head right now. Order the repeat prescriptions. Check the draft plan. Chase the assessment. Email the school. Do the forms. All the forms. Keep the world turning. Rinse, repeat.
But you want to make a difference for your child and others like them. Let me show you how.
I’ve got 2 minutes and 1 nerve remaining, but I want to help
Your time is precious – let’s use it to benefit your family directly.
Contact has teamed up with Renaissance Legal to offer a webinar to help you Start planning for the future with confidence.
For parents in England & Wales, this will cover Wills, Trusts and what you need to consider financially. Philip has a warm and accessible presenting style, and it will be strictly cameras off, so you can grab a coffee and watch from the comfort of your sofa.
At Contact we welcome the light that Kellie Bright is shining on the fight for education that families with a child with additional needs are facing. Did you see her recent Panorama documentary?
At Contact we remain determined to elevate parent voice across the UK, on issues across the board. If you would like to share your story via Contact’s Your Voice platform, get in touch by emailing [email protected].
Over 400 parent carers took part in our bi-annual information and advice services survey this September. Our survey helps us ensure we’re meeting your needs and is an opportunity for you to suggest how we can improve.
Aside from knowing how satisfied you are with our support, we want to know the impact we have.
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!
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