Time to tackle the true cost of caring

New Statesman​

27-05-2025

'I just wish there was help for people like me. I am really struggling just with day to day living costs for myself and my children. It's having a massive impact on my mental health. It's becoming very overwhelming, and I have no family
to support.'
These are the words of one of the 2,362 parents and carers who contributed to The Cost of Caring 2025, a new report published by Family Fund, a UK-wide charity that supports families with disabled and seriously ill children.
According to chief executive officer Cheryl Ward CBE, the report has highlighted a pattern of poverty and pressure across thousands of households, as families deal with the financial and emotional impact of raising a disabled child.
'It's well established that raising a disabled child comes with significantly higher costs – the so-called 'disability premium'. The Cost of Caring report highlights not only the financial burden but also the profound impact this has on both carers and disabled children. It lays bare just how difficult it is for these families to break free of reliance on benefits,' she said.
For families raising a disabled or seriously ill child, almost every aspect of daily life comes with additional expenses. Children may need a special diet, so the weekly food bill costs more. Bedding and clothing may need to be changed more frequently, which means having more of it. The home may need more heating and cleaning to avoid infections that could have a dangerous impact on health. It all adds up – and for many families on a low income, the cost is more than
they can afford.
The Cost of Caring report reveals that 44 per cent of families raising a disabled child cannot meet day-to-day living costs – despite receiving disability benefits. Some 87 per cent of parents and carers have no savings at all to provide any kind of financial buffer, making it difficult to cope with even minor unexpected expenses, whilst 83 per cent of respondents are in debt, with a high proportion of these struggling to keep up with repayments.
The consequences are deeply felt. Family breaks are out of reach, birthdays go unmarked. A quarter of disabled children have no access to play equipment, whilst one in ten parents and carers cannot afford to buy their disabled child a winter coat. For these families, 'doing without' is no longer the exception – it's the norm.
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Of equal concern is the impact of low income on physical and mental health and well-being. More than half of the parents and carers who participated in the research reported skipping meals to allow their children to eat. Some 46 per cent said they could not afford necessary dental treatment, 17 per cent could not afford over the counter or prescription medicine for themselves, 11 per cent were unable to afford even basic toiletries.About 28 per cent of the parents and carers who participated had mental well-being scores consistent with probable clinical depression whilst 26 per cent had a maximum score on the UCLA Loneliness Scale.
The impact is also deeply felt by the children. 'Parents are shielding their children as best they can, but they are clearly very worried about the negative effects of poverty. More than two thirds of the parents in our survey felt that their financial situation is negatively affecting one or more aspects of their child's well-being and development, including their ability to engage with education. It is tragic reality that some of our most vulnerable children are at the intersection of poverty and disability,' says Cheryl Ward.
Moving from welfare to work can be a constructive way for some families to increase income and alleviate financial pressures, but Ward warns there are no easy answers. 'Many disabled children need a great deal of extra support with personal care, supervision, medication, therapies and medical appointments – it's the equivalent of a full-time job, leaving parents exhausted and unable to take on paid work.Some parents told us that having more access to suitable childcare would allow them to work more hours or return to employment, but for families with children with complex needs, appropriate childcare is extremely difficult to find. One parent in the research had been on a waiting list for five years. Until these barriers are addressed, work does not present as a viable route for families with disabled children to improve their financial situation.'
Family Fund is inviting policymakers, funders, service providers and charities to work together on meaningful, practical solutions that reflect the everyday realities of families raising disabled children. With the right supports in place – from more flexible back-to-work support to improved access to inclusive childcare – there is potential to ease financial strain and unlock opportunities. Breaks and respite can help relieve carer stress, and targeted grant-making can help families manage 'unexpected' costs that could otherwise push families into debt.
Despite the challenges, Cheryl Ward is positive about the possibility of change. 'We supported tens of thousands of families with basic items such as washing machines, furniture, days out, and toys. It is amazing how much positive benefit can come from the right support at the right time, so whilst the situation is difficult, it is by no means hopeless and there is opportunity. But we are at a crossroads. Many families raising disabled children are at the sharpest edge of income instability. They are doing the best they can, but they deserve and need more support. The Child Poverty Strategy provides an opportunity to listen to what families have to say and tackle the very real and pressing issues they face. We all need to make the most of that opportunity.'
To request a copy of The Cost of Caring report or for follow up enquiries, e-mail [e-mail]. Donate to support Family Fund's work at www.familyfund.org.uk
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