Charging disabled people for their care and support is driving many of them into debt and forcing them to cut their spending on food or heating, according to new research by a network of disabled people’s organisations and their allies.
The study by the Independent Living Strategy Group (ILSG) found that four in 10 (41 per cent) of those responding to a survey had experienced a substantial increase in charges over the last couple of years.
Nearly half (43 per cent) had had to cut back on their spending on food to pay for care.
And two-fifths of respondents (40 per cent) said they had had to cut back on heating costs to pay for care and support.
The study concludes that charging for the support disabled people need to go about their daily lives is “unfair, counterproductive and undermines the primary purpose of the care and support system”.
The effect of charging, it says, is often to “drive disabled people into care poverty, and to create confusion, stress and complexity in an already overly burdened bureaucratic system” through what is effectively “an unhelpful and unnecessary tax on disability and old age”.
The study analysed the results of an online survey of more than 600 disabled people who had received a community care assessment, and freedom of information responses from all 152 English local authorities with social care responsibilities.
All but one of the local authorities – Hammersmith and Fulham – impose charges on some of their service-users.
The study heard from one disabled person who benefited from Hammersmith and Fulham’s no-charging policy, who said: “Social care is a human right. It’s an essential service like education or the NHS.
“It’s not ethical to charge for it, in effect it’s an extra tax.”
Charging for care, says the study, only raises “modest” sums of money – about 12 per cent of spending on care and support – but has a “profound impact on the individual”, with an average charge per year of more than £2,000 (£2,243).
Baroness [Jane] Campbell (pictured), who chairs ILSG, said: “Support provided under the Care Act is meant to improve the wellbeing and independence of disabled people.
“By charging many for that support, the system is making a mockery of the spirit of the legislation and causing worry, stress and poverty.
“Charging raises a relatively small sum of money which is pushing up costs elsewhere.
“The financial impact of personal care neglect such as pressure sores, kidney infections or falls, as well as stress related illnesses, means finding extra resources for the NHS.”
The group called on the government to scrap all charges.
But if it refused to do that, ILSG said, it should introduce other measures to “mitigate” against the “worst effects” of charging.
These should include monitoring the number of people who decline or decide to stop receiving council-funded support after a charge is imposed or increased.
Only 17 of the 152 councils said they knew how many people had declined or abandoned social care packages they had been assessed as needing once they were told how much they would have to pay.
All councils should also carry out an equality impact assessment of their charging policies, said the group.
And it said that all councils should introduce an “early warning” system to identify people getting into charges-related debt, introduce a “breathing space” before any debt collection action is taken, and provide access to support to manage such debts.
Sue Bott, deputy chief executive of Disability Rights UK, one of ILSG’s members, said: “If councils are to persist in this iniquitous tax on disability, they must at least reintroduce some consistency and clarity to their approach.
“The many councils that have failed to conduct an equality impact assessment – and to monitor the numbers of disabled people driven out of the care system by charging – must also get their act together.”
The government is expected to publish its long-awaited green paper on adult social care funding within weeks.
The Independent Living Strategy Group has been working on protecting and promoting disabled people’s rights to independent living in England since 2013.
Its members include disabled people who were part of the independent living movement during the 1970s and in later years, as well as younger activists, other individuals and organisations concerned with independent living.
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