Four-fifths of households that include a person with a neuromuscular condition say the benefits system is failing to cover the extra costs of living with the impairment, according to a new report.
The report by the Muscular Dystrophy Campaign (MDC) says two-fifths of households are struggling to pay the bills for basic utilities such as gas, electricity and water.
Some disabled people are facing fuel bills as high as £1,000 per quarter because of rising fuel costs and the need to keep warm to ease the symptoms of their condition or because of their lack of mobility.
Many also have to meet the electricity costs of running ventilation equipment that is needed to keep them breathing.
The charity surveyed more than 600 households which include someone with a neuromuscular condition for its report, The Cost of Living with Muscle Disease, which makes a series of recommendations for improvements to the welfare and care and support systems and around accessible housing.
Among the recommendations, the report calls for reform of the much-criticised work capability assessment, the controversial new test that decides eligibility for out-of-work disability benefits.
And it says the government should rethink its equally controversial plans to stop paying the mobility component of disability living allowance (DLA) to disabled people in council-funded residential care.
The charity also added its voice to calls for the government to extend winter fuel payments to disabled people receiving higher rates of DLA.
One respondent to the survey said: “I am not even keeping my head above water. It is a choice of heating or eating.”
Another said he had lost his home and had been bankrupted twice trying to afford the cost of living with his condition.
A third respondent said he believed he had spent an extra £100,000 over the past five years funding adaptations, vehicles and equipment.
Robert Meadowcroft, MDC’s chief executive, said he was shocked to hear of parents who could not afford birthday presents for their children with life-limiting conditions, and families forced into bankruptcy because of the extra costs of essential equipment.
He said: “It is unacceptable that winter fuel assistance is not given to those with severe muscle disease and other disabilities during the coldest months of the year.
“We are living in a period of economic challenge, not Dickensian Britain. The government must act now to offer a financial life-line to families severely affected by disability and ill-health and extend winter fuel support.”
18 November 2010