Soaring numbers of families with disabled children are being forced to go without food or heating because they can no longer afford the basics, a major study shows.
Changes to benefits and the rising cost of living are forcing many of the country's most vulnerable families to cut back on essentials, according to research from Contact A Family. The situation is having a direct impact on their health in what campaigners dubbed "a national scandal".
Overall, 83 per cent of parents with disabled children say the family is now having to go without. Of these, almost a quarter say their child's health has worsened as a result, and more than two thirds suffered ill health themselves.
Welfare reform has come at a time when rising food and energy bills have pushed the finances of many families to the limit. For those with disabled children it is even more difficult because they often have extensive extra living costs, such as the need for warmer houses or heavier reliance on cars.
One third of families with disabled children are worse off as a result of benefit changes – nearly half by more than £1,500 a year, the report warns. Changes to tax credits, a reduction in help with council tax and the "bedroom tax" were the commonest problems reported.
Most report turning off heating to save money, with a third of those with disabled children going without heating to make ends meet, up from one in five in 2012. The number going without food has nearly doubled over the same period to 31 per cent.
Dame Anne Begg, who will launch the research in Parliament on Tuesday, said: "It's a sad testament to our society that we're not looking after the most vulnerable. It's never been easy for families with a disabled child or adult but it has got harder. The economic downturn, the fact that benefits have not kept pace with inflation, and welfare reform have all worked together. A lot of these families have been hit by other changes in the benefit system such as the bedroom tax."
The research, called Counting the Costs, is a UK-wide survey of more than 3,500 families with disabled children. Researchers found that debt was a growing problem for families with a disabled child, with 36 per cent having taken out a loan to cover costs, up from 29 per cent in 2012.
Karen Horridge, the chair of the British Academy of Childhood Disability and a consultant paediatrician at Sunderland Royal Hospital, said her association was "extremely concerned" by the findings. "I know of families whose homes have become damp and their disabled children ill, needing hospital treatment as a consequence, because of insufficient funds to heat their homes effectively," she said. "I know of a number of families with one or more disabled children who have got into debt because of the high costs of keeping warm, fed and clothed. This is especially problematic with some private landlords who are less flexible about payments.
"We're very worried about the direct impact of austerity measures on disabled people and their families but also on the indirect cuts on the services they need. Some families are being referred to food banks because they don't have the means to put food on the table."
Contact A Family says the Government must ensure that the welfare system reflects the extra costs and barriers to work that those with disabled children face. It also proposes that energy companies should offer discounts to households with a disabled child.
Amanda Batten, the chief executive of Contact a Family, said: "Increased living costs and cuts to financial support have left some families with disabled children reeling. Despite the economy showing signs of recovery, families with disabled children are not optimistic about the coming years. Instead, they feel they are facing an increasingly precarious financial future."
More than a quarter of families surveyed had extra costs of £300 or more every month relating to their child's disability. The largest costs were heating and utility bills.
The shadow work and pensions minister, Rachel Reeves, said: "David Cameron's failure to tackle the cost-of-living crisis has forced families with disabled children from all corners of the country to choose between heating and eating. A Labour government will tackle the cost-of-living crisis by freezing energy prices, raising the minimum wage, giving incentives to businesses to pay a Living Wage, extending free childcare provision and scrapping the bedroom tax."
A DWP spokesman said: "This Government is committed to supporting the disabled and their families, and continues to spend around £50bn a year to this end. Our welfare reforms will improve the lives of some of the poorest families, with Universal Credit making three million households better off by £177 a week on average."
Case study: 'Yasmin has muscle spasms and they're worse if she's cold'
Claire Melia, 36, from Sheffield has twin eight-year-old daughters Yasmin and Chiara. Yasmin has a severe form of cerebral palsy
"I'm Yasmin's full-time carer so working is not an option. Heating and electricity costs have gone up massively. My benefits have actually reduced because my housing benefit no longer covers my mortgage and I have to find another £150 a month. The house needs to be at around 20C or it's painful for Yasmin. She has muscle spasms, and if it's cold they're much worse. The heating is off when they aren't here. I'm not in debt at the moment but have had a debt of £600 previously. I've cut back on food as well. Some days I skip one meal and some days two.
"I don't drive but we have to use accessible taxis which cost more. Her Disability Living Allowance is meant to cover the cost but it doesn't."
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies