Category: Other

There are ten days to go until the Contact Awards 2025 final ceremony, taking place at the Palace of Westminster in London.

We’ve been introducing you to some of our finalists. And today we’re shining a spotlight on one of the final three in our Change Maker category, for an individual or group who work together to make life better for other families with disabled children in their community. 

That’s certainly what Warrington parent carer forum (WarrPAC) do. Many parent carer forums received nominations for our awards, highlighting the vital work they do in their local areas. As the government’s parent carer participation delivery partner, supporting this work is very important to us, so we are delighted that our judging panel has chosen of these nominations to go through to the final.

WarrPAc was nominated by their Chair Jean, who said:

“Despite busy lives and full-time jobs, this team give up their limited spare time to support local families navigating the SEND system in England. They also lead collaboration across eight other forums in Cheshire and Merseyside.

“When I stepped back after a medical diagnosis, the team, my team, stepped up without hesitation – offering personal, emotional, and professional support.

“Passionate and selfless, they work tirelessly for others and truly deserve recognition for their commitment to the SEND community.”

Good luck WarrPAc!

You can read about all our brilliant finalists on our Contact Awards page.

At Contact, we often hear from families who want to raise issues that matter to them and their disabled child with MPs and local decision makers. But often they are not sure where to start, or how to do this effectively.

That’s why we are inviting families to join us for an online campaigning skills workshop on Monday 1 December at 10am.

This workshop is funded by the National Lottery Community Fund, Contact is partnering with Hope For The Future as part of the A-future-for-all. We’re aiming to empower parents to drive action.

Influencing Change through Political Advocacy
Monday 1 December, 10am – 12pm on Zoom

We particularly welcome parent carers keen to speak out about what’s happening for their child and family and campaign for change.

This free, two-hour online workshop is aimed at helping parent carers of disabled and neurodivergent children build political advocacy skills, so you can:

• Understand the political and policy context around children’s disability and lobbying more broadly.
• Build a positive relationship with your local councillor and MP.
• Craft clear, specific and meaningful asks of my politician or official.
• Know what to do if they don’t respond, and how to counter defensive behaviours.

The workshop is open to all parent carers of disabled and neurodivergent children (up to age 25) in the UK. You don’t need any prior knowledge or experience of campaigning. It helps if you’re interested in raising issues that matter to you in the coming months.

Please note, tickets are limited and will be issued ‘first come first served’. Please book early to avoid disappointment.

This applies in England only.

This week we are submitting evidence to the Public Accounts Committee’s home-to-school transport inquiry. 

If you replied to our transport for 16-19 year olds survey – thank you!  Your replies have helped us produce robust and up-to-date evidence on school and college transport and the impact felt by young people and their families. 

If you didn’t get the chance to do the survey, your child is a different age, or you have more to say on transport, you can submit your own evidence to the inquiry. They want to hear from organisations and individuals – and it’s easy to do. 

What are they asking? 

The committee are asking about home to school transport for disabled students of all ages. They are looking at how to manage rising demand, available support for young people; and efforts to contain costs.  

What is Contact telling the inquiry?

We will be telling them about the importance of transport for disabled children and young people who often have to travel further just to get the education that meets their needs. Often these children cannot travel independently or use public transport.

We will highlight the issues at 16 where discretionary transport is less likely to be suitable. Or it might not meet the needs of the young person or family – like a Personal Transport Budget that is not close to covering the cost of transport, or a bus pass for someone who cannot use public transport.

We will also illustrate the impact on young people and families when transport is not provided. We will show what it can mean for attendance, parent carer employment and family finances.

How to give your views 

You can give your views online.

The deadline has been extended to Friday 28 November.

You can just write in a document and upload it as an attachment. There is not a form to fill in. Try to keep it short and to the point. And note that the committee are not there to help solve any current transport issues.  

You don’t have to answer these questions and can simply focus on your experience as a parent carer. Tell them why transport support is important to you and your child. Tell them if it has recently changed (or if you think it will change at 16), and what the impact might be on your child and you as a family.  

For your child, you could think about their ability to travel independently; whether transport helps them attend school or college; if they have a community or friends on transport; and the effect on them if this was removed.

For your family, you could consider whether transport helps you stay in employment; the financial – and time – pressure of parents providing transport; and the impact on siblings.  

Submit your evidence.

This December, a team of our amazing staff will be swapping their work clothes for Santa suits as they take part in Santa in the City, a festive fun run through central London.

Dressed head to toe in bright red, our team will join hundreds of runners to light up the city streets. And they’re doing it to raise vital funds for our services for families with disabled children.

While it promises plenty of festive fun, the event carries a deeper meaning for our team. Every day, we see first-hand how important Contact’s work is providing advice, information, and emotional support to families.

‘’I love the idea of supporting Contact while having so much fun! I can’t wait to see hundreds of Santas coming together to do good. That’s what Christmas is about right?  With the backdrop of London as well, I’m looking forward to a truly festive and inspiring night.’’

Bridie, Helpline Parent Advisor – SEND

For many families, Christmas can be one of the most challenging times of the year, faced with the extra costs, pressures, and isolation that can come with caring for a disabled child.

Funds raised from the event will help Contact continue to be a lifeline for thousands of families across the UK.

Our team hopes to spread not only festive joy but also hope and solidarity, reminding families that they’re never alone and that support is always within reach.

And you can join us!

And there’s still time to join in the festive fun! You can also take part in Santa in the City whether you’re running, walking, or just soaking up the atmosphere! 

Register and join Team Contact now!

“I’m looking forward to spending time with colleagues outside of the office! I’ve been really inspired reading the stories from the Contact Awards, especially how much families do to help each other. I’m hoping I can help too in a less conventional way!

Tom, Web manager

By taking part, you’ll help Contact:

• Offer vital advice and emotional support to families caring for seriously-ill and disabled children.
• Connect families through local groups and online communities.
• Campaign for a fairer future where all disabled children can thrive.

So grab your Santa hat, round up your family and friends, and be part of something truly special this Christmas!

“We work closely with families who rely on Contact’s services and know the difference this support makes. Whether it’s helping parents navigate the education system or access financial advice, Contact is there when it matters most.”

Hannah, Fundraising Officer

To support our Santa in the City runners, make a donation, or sign up to take part, visit our Santa in the City webpage.

This summer the government announced a cut to the Universal Credit health element – better known as the limited capability for work and work-related activity element.

We are inviting parents to join us for a special webinar via Zoom next Thursday 13^th 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 19^th 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.

New to webinars?

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 13^th 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.  

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.

We have launched a new, dedicated advice flowchart aimed at simplifying the steps for families of disabled young people attempting to access their Child Trust Fund (CTF) savings.

You can use this flowchart wherever you live in the UK.

We have developed the tool with Contact Change Maker Andrew Turner, in response to feedback from families.  

What’s the issue? 

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.  

For savers with only a Child Trust Fund, this can be an unduly lengthy and burdensome process. Contact is working hard with Andrew Turner to lobby the government to change this for families.  

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. 

Where can I find out more about the campaign? 

Head to our Child Trust Fund campaignn page or join our dedicated Facebook campaign group.

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! 

The group have inspired thousands, and their donations will enable Contact to help even more families who need our advice. This includes parents unsure how to get the extra help their child needs if they’re struggling at school; those seeking advice on school or college transport; and families whose children have health needs that affect their education or school attendance.

“With their help, we can make a change”

Nick shared what the challenge meant to him: 

“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.” 

Key findings from our FOI requests

Key findings of Contact’s FOI survey, shared for the first time today on Sky News, include: 

• 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.

Read our detailed briefing that outlines the full findings and our recommendations for change. And download the full FOI request data by ICB.

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. 

Last week the government released its long-awaited white paper on post-16 education and skills in England.

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 government states that it is taking action to increase support and outcomes for learners with special educational needs and disabilities (SEND) in post-16 provision. Dame Christine Lenehan, the department’s strategic advisor for SEND, is helping to facilitate these reforms.

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.

Last week we partnered with Renaissance Legal to present a webinar on planning for the future with your disabled child.

Our webinar is now available to watch for those who missed it on our YouTube channel, or below.

What does the webinar cover?

Renaissance Legal’s leading and trusted expert Philip Warford presents this webinar, all about providing financial security for your disabled loved one as well as the rest of the family.  

The webinar covers:

• 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.

What did attendees say?

We had some brilliant feedback on the day:

“Really helpful – thank you – raised and answers lots of questions and will help guide thinking and family discussions. Thank you for explaining in terms we can understand!”

“Thank you. This made a scary and complicated subject very clear and accessible.”

“Much better than previous webinars I attended on the same topic. Thank you very much.”

“We have been trying to find somewhere that ‘gets’ our scenario to sort this out, especially with the tax implications as well, and I feel that we have finally found somewhere where it won’t be guesswork if that makes sense. Thank you thank you thank you.”

Where can I find more information?

We have information on our website all about wills and trusts.

You can read about more topics to do with preparing for adulthood too.

And if you’d like to know more about leaving a gift to Contact in your will, please visit our legacies page or place a free order for our legacies guide.

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.

Explore this topic in our latest podcast episode

In our latest podcast episode, we speak to Mary Mulvey Oates, Contact’s Manager for Early Years Participation and Insights. Mary co-led an eighteen month research project to explore what can be done to improve access to healthcare for these communities. 

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. 

Listen to the full episode of The Helpful Podcast for Families of Disabled Children below, or on your preferred podcast platform. You can also read a full transcript of the interview.

Research findings 

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. 

Read more about the research project including a summary of the findings for all the community groups included in the research, including young people with additional needs, and parents who are themselves disabled or neurodivergent. 

Tips for parents accessing healthcare 

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 route around 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: 

Visit the following links to find us: 

Apple Podcasts/iTunes 

Google Podcasts 

Spotify 

Overcast 

Pocket Casts 

RadioPublic 

Or visit our Acast podcast homepage. 

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).  

We’re excited to launch a new hub on our website, Talking about Tomorrow, packed full of advice for families in Scotland with disabled children moving into adulthood.

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:

• Your and your child’s rights and responsibilities.
• Benefits and finances after 16.
• Wills, Trusts and legal matters.
• Learning and job opportunities.
• Making a transition plan and how to get support.

Talking about Tomorrow also features a handy jargon buster, lots of parent carer and young person case studies, and videos and podcasts.

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.”

Visit our Talking about Tomorrow hub now!

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.

Take part in our survey now.

Provide MPs the evidence they need to make changes

The Public Accounts Committee – a group of MPs tasked with the scrutiny of public spending – is carrying out an inquiry into home-to-school transport.

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.

Take part in our short survey.

Another survey?

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.

Fill out the survey now.

You can also submit your own response to the committee’s call for evidence online.

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If you need help with school or college transport, look at our transport in England pages or contact our helpline.

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.

You can support The Smithy Family Team on their JustGiving page.

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.

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.