This is how much caring for a disabled child really costs

The two groups most likely to be in poverty in the UK today are children and disabled people. But what about families with a disabled child?

New research from Family Fund uncovers the reality of life for families raising disabled children and how the circumstances of these families leave them uniquely vulnerable to government policy.

We hope that the child poverty strategy, now due in the autumn, will include specific actions to reduce the financial impact of disability on disabled children and their families.

• Government warned disability benefit cuts will drive people into homelessness, not work
• DWP warned benefit claimants are dying of starvation
• Revealed: DWP has lost more employment tribunals for disability discrimination than any other UK employer

In 2022, Family Fund set out to understand the financial impact of caring for a disabled child and found a picture of going without essential items, worry and isolation.

We’ve returned to these themes in 2025 to see if the changing economic and political climate has brought some relief to families. Sadly, we find that things have not improved for families raising disabled or seriously ill children and young people.

More than 2,000 families from across the UK shared their experience in the Cost of Caring 2025. Shockingly, 44% of parent/carers reported experiencing income insufficiency, where their income was simply not enough to cover their family’s basic needs like food and accommodation, despite near universal uptake of disability benefits.

Around 80% of parent/carers were unable to replace everyday household items like fridges or beds if they broke and would have to manage without essential everyday items or plunge into debt to replace them. An unacceptable 51% of parents are forced to skip meals to make sure that their children can eat.

Chevonne from Portsmouth shared how the disability premium impacts her and her son Mikey, partner George and daughters Mika and Sky, saying: “It’s all about the electricity bill because Mikey has so much equipment just to keep him alive. He has so many machines he’s on a ventilator, he has an oxygen machine, his bedroom looks like a hospital room.

“Our electric bill is about £600 a month. We just can’t keep up with it. At the moment we’re in arrears. Our electric and gas bill, I still owe them £3,000. I’m just paying what I can a month and I don’t think I’m ever going to get to the end of it.’”

At Family Fund we welcome the government’s commitment to reducing child poverty through the child poverty strategy, but the emerging emphasis on paid work as a route out of poverty fails to grasp that parent/carers of disabled children are already doing a day’s work (seven hours on average) on the additional care that their child needs over and above the care any child of their age would need. Unsurprisingly, this leaves just 7% able to work as much as they would like.

Chevonne explains: “I worked before Mikey was born but now I’m his full time carer. I would love to work just for my own sanity but at the moment myself and his dad we have to do night shifts. Someone’s got to be awake 24/7. We have to take it in shifts of sleeping. He had to give up work because last year I was doing it all myself, I just wasn’t getting any kind of sleep.”

The impact on family’s wellbeing is immense, with 28% of parent/carers likely to be clinically depressed and despite parents’ extensive efforts to shield their children, 68% of disabled children impacted by their financial situation.

At Family Fund we welcome the current government’s focus on enabling opportunity for all, however the proposed changes to PIP and universal credit and the delays to the child poverty strategy announced last week make this a period of significant and deeply worrying uncertainty for families raising disabled children and young people. Families need long term certainty that they can care for their disabled children without being forced into unnecessary penury.

At Family Fund, we call upon the government to address the specific issues facing families with disabled children in the child poverty strategy. The disability premium means that life costs more for families with a disabled child and policy needs to focus not just on income, but also essential expenses.

Many parent/carers are already working at maximum capacity, but their work is looking after their disabled child, not engaging in the labour force. Their wellbeing is poor, and proper financial support is essential.

Dr Abigail Dunn is head of policy, research and evaluation at Family Fund. Family Fund is the UK’s largest charity making grants to families of disabled and seriously ill children and young people on a low income. To find out if Family Fund can help you, or you can help them, visit Family Fund.

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