The Cost of Caring 2025: “No family should have to choose between heating, eating, and caring for their disabled child”

With UK charity, Family Fund, which provides essential grants and services to low-income families with disabled children and young people

Contents

Families raising children and young people with disabilities or serious illness face seemingly insurmountable challenges every day, especially now, with a high cost of living and the prospect of heartless cuts to benefits and services.

A new report from the charity, Family Fund, published today, shows thousands of families like these across the UK are being driven further into debt and unable to meet vital extra caring costs. These include specialist equipment, utilities, travel to medical appointments, food and increased wear and tear on the home. The report shows the continued daily impact of a relentless caring load, along with a struggle to afford essentials like food and heating. Family Fund has written for us about their new report, The Cost of Caring 2025,

Everyday sacrifices and mounting costs for family carers, by Family Fund

When your child has a disability or serious illness, daily family life comes with enormous financial and emotional pressures. At Family Fund, we’ve just launched our latest Cost of Caring 2025 report, based on insights from more than 2,000 families across the UK. Sadly, what we’ve heard echoes what many of you already will know all too well: very little has improved since our last study in 2022.

Despite the support available, disabled children remain significantly more likely to live in poverty than non-disabled children, even before the added costs of disability are factored in.

Here’s just a snapshot of what families told us:

44% of parent carers say their income doesn’t cover basic needs like food and housing.
80% wouldn’t be able to replace essentials like a fridge or bed if they broke without going into debt or simply going without.
51% are skipping meals to make sure their children can eat.

These figures are more than statistics. They represent real families, living under real strain.

Image shows increased costs from special diets, specialist equipment, additional clothes, more bedding and cleaning and more heating — Additional costs are high. Graphic by SNJ. Free to share.

Image shows quotes from report: I stay awake worrying about how I will afford to pay everything and keep everyone fed and warm.”
“My daughter’s sensory needs have increased leading to more broken furniture, damage to the property, damage to her clothes and constant need of sensory resources.”
“The money we get for my son’s disability is what we are using to pay most of the bills and this is making our day-to-day living expenses difficult.”
Cost of Caring 2025 Graohic by SNJ — Family Fund Cost of Caring. SNJ graphic-share free

Danielle’s Story: “We go without, so Finn doesn’t have to”

Danielle, from Blackpool, knows exactly what these pressures feel like. She and her husband Darren care for their son Finn, who has Avoidant/restrictive food intake disorder (ARFID).

“Finn only eats a couple of things, and he has to have them daily or he just won’t eat. His food is horrendously expensive, and we use his DLA to cover it. But when something unexpected breaks, like his tablet or the fridge, it comes out of money we don’t have. We make a lot of sacrifices. Willing sacrifices, because he’s our child and we love him. But we definitely go without. I think Darren’s been overdue a sight test for about five years.”

Danielle is not alone. Many parent carers told us they are being pushed to the edge financially, emotionally and physically.

Join us on BlueSky

SNJ WhatsApp Channel

Caring is a full-time job (just without the pay)

Parents and carers are working an extra full day each week, over seven hours, just on care and admin related to their child’s disability. That’s on top of everything else.

Like 93% of families in The Cost of Caring, Danielle wants to have paid work, but caring responsibilities make it impossible.

“Finn doesn’t go to nursery. We’re at home while we wait for his EHCP. We tried mainstream nursery last year but it was traumatic. He’d bang his head so hard they worried he had a concussion. He bit his hands until they bled. It just wasn’t safe for him.”

“Families are doing all they can, but they need support that reflects the complexity of their lives. We call upon policy-makers, funders, support agencies and charities to recognise the day-to-day realities faced by families, and work together to create a fair and sustainable future for families on a low income, who are raising disabled and seriously ill children.
No family should have to choose between heating, eating, and caring for their child.
from The Cost of Caring 2025, Family Fund

Promoted

Policy change on the horizon

We welcome the government’s commitment to creating opportunity for all. But with proposed changes to PIP and Universal Credit, alongside delays to the long-awaited Child Poverty Strategy, many families are facing a period of real uncertainty.

The mental health impact is equally alarming as 28% of parent carers are likely to be clinically depressed, according to our findings.

We’re calling on the government to ensure the Child Poverty Strategy addresses the specific realities of families with disabled children, by:

Recognising that disability increases essential costs—policy must consider expenses, not just income.
Acknowledging that many parent carers are already at full capacity, even if they aren’t in paid employment.
Providing proper financial support that reflects the true cost of caring and supports parental wellbeing.

Also read: Act now! Sign and Share the Parliamentary Petition to PROTECT SEND RIGHTS!

Help available now from Family Fund

We know change takes time, but families need help today.

That’s where Family Fund comes in. As an established national charity, we provide grants and services to families on a low income raising disabled or seriously ill children and young people under the age of 24. We’re here to help make life a little easier.

We offer practical grant support tailored to provide whatever makes the biggest difference in your child’s quality of life. Grants include items such as sensory toys to support development, a bed to ensure restful sleep, a tablet to support learning, or a short break to recharge together as a family.

But our support doesn’t end with a grant. Family Fund also offers a range of additional services to empower and inform families, including:

Online tools to guide you through available support
Benefit checks and financial advice to help maximise your income
Specialist workshops and digital skills training to build confidence and capability

We believe every family deserves the chance to thrive, and we’re committed to being there for families in need. Find out more and check your eligibility at www.familyfund.org.uk

The Cost of Caring 2025 is available to download from Family Fund’s website. Please share this report widely because every voice helps push for the change families so urgently need.

Download the report

Disabled Children’s Rights are Under Attack.
We’re fighting, but we can’t do it alone: we need your help more than ever.
We’re volunteer-run, but costs are rising. To help us keep going, please consider a one-off or, if it’s possible, a regular donation.
Read more about being a regular donor here.
We use Zeffy to fundraise, which doesn’t charge us a fee, so 100% of your donation reaches us.

DONATE TO HELP
KEEP SNJ ONLINE!

Don’t miss a thing!

Don’t miss any posts from SNJ – simply add your email address below. You must click the link in the confirmation email you’ll receive to activate your free subscription.

You can also keep up with us by following our

WhatsApp Channel!

Want more? Be an SNJ regular donor!

SNJ is a non-profit and everyone who writes here does so voluntarily. We need your support to help us with costs by donating once or as a regular patron. Find out more here

About
Latest Posts

Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder & co-director of Special Needs Jungle. (She/Her) Autistic parent of two young autistic adults Devoted Grandma. National SEND advisor, journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media.
She is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

Latest posts by Tania Tirraoro (see all)