Disabled people are having to choose between eating and paying for carers because of “catastrophic” social care charges, charities have warned.
The MS Society, Parkinson’s UK, Age UK and Mencap are urging the government to take action amid growing evidence that disabled and elderly people are rationing their social care because they cannot afford it, or taking the care and accruing thousands of pounds of debt.
Genevieve Edwards of the MS Society said: “We know care is becoming increasingly unaffordable for people with MS, potentially costing more than £110,000 in a lifetime. Faced with catastrophic care costs, some are forced to choose between care and other essentials, such as food and heating.”
Local authorities have always been legally entitled to charge for social care, but in the past many asked individuals for little or no contribution towards its provision. But under mounting financial pressures, a growing number of local authorities are adopting or raising social care charges. Two-thirds of local authorities in England have introduced or increased charges for care in the past three years, according to freedom of information requests by the MS Society.
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There are wide variations between councils in both the amount they charge for social care and who has to pay. Disabled people are already more likely to be living in poverty than those without a disability, and critics say social care charges amount to a tax on disability and old age.
Kari Gerstheimer of Mencap said some people with learning disabilities were being unlawfully charged for care because local authorities were failing to account for the extra costs that come with a person’s disability, or insisting that disability benefits intended to pay for other essentials go on care fees.
“It is shocking that people with a learning disability who are already on very low incomes – even those relying on benefits – are having their support packages cut and are being charged unaffordable rates for their own care. Government needs to solve the problems with social care rather than forcing people already struggling to make ends meet to pay more.”
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Keith Bright, 58, who has MS, said he had had to make his team of carers redundant after the council increased the contributions he had to make for his social care from £125 a week to £179. Unable to afford that and keep up with mortgage payments on their bungalow, Bright and his wife, Glenys, had no choice but to let the carers go. Now 29 hours’ care a week has been replaced by one hour a day. “That’s not even enough to help me get showered,” he said. “But it’s all we can afford.”
On top of the new costs, the council reassessed Bright’s case in the light of a change in his disability benefit and backdated his contributions, requiring the couple to find another £2,000. They have already spent more than £28,000 in five years on social care and had to take out a loan.
Glenys Bright said they had been threatened with bailiffs for the debt. “We both feel we’ve been treated like criminals yet we haven’t committed a crime,” she added.
Analysis by the union GMB last year found that more than 160,000 people had become trapped in debt for social care, with more than 1,000 taken to court by their local authorities over the last two years over non-payment for their own care, or that of loved ones.
A Department of Health and Social Care spokesperson said: “We are committed to ensuring everyone has access to the care and support they need and have provided local authorities with access to up to £3.6bn more dedicated funding for adult social care this year and up to £3.9bn for next year.
“We will shortly set out our plans to reform the social care system for adults of all ages to ensure it is sustainable.”