Disabled people have told researchers that charging for social care is “unjust and harmful”, just as the new prime minister has spoken of his determination to address reform of the social care system.
This week, Andy Burnham pledged to face the challenge of fixing the “broken” social care system “head on” and end decades of “political drift” (see separate story), and pointed to concerns raised by disabled adults who say they face “very unfair care charges just to live their life”.
New research, co-produced with disabled researchers, has concluded that the charging system is “highly complex, inconsistent, burdensome and punitive”, and contributes to “increased hardship” for disabled people.
The system imposes “significant administrative, emotional and financial burdens” on disabled people, with many describing the system as “stressful, exhausting and humiliating”, the research found.
Those who took part in the research said care charges pushed disabled people further into poverty, “increasing hardship, causing spiralling debts” and removing their ability to save for the future.
Disabled people feel they need to prove they deserve support and must justify their basic disability-related needs, the research paper said.
And for some disabled people, charges force them to decline council care, leading to a deterioration in their physical and mental health.
The researchers also found “substantial variation” between the charging systems operated by different local authorities, and “inconsistent” access to advice and advocacy.
The research, Social Care Charging: is it worth it?, focused on older and disabled people in England who contribute to their social care through charges, usually from their benefits, and receive care in their own home.
The research was co-produced with two disabled researchers, Anne Pridmore and Eleni Chambers, and included interviews of representatives of disabled people’s organisations and other groups, including disabled people with experience of paying for their care.
Nearly every participant in the research – published by the Centre for Care – said they believe care charges should be abolished.
Although the researchers only spoke to a small number of participants, the publication of their report is well timed, with Burnham suggesting this week that he will make social care reform a priority.
Burnham has repeatedly called for an end to all social care charging, telling a conference of disabled people’s organisations three years ago that care charges were “an abomination”.
Two years before that, in 2021, he told a fringe meeting at Labour’s annual conference in Brighton that it was only the “cowardice of politicians” that was preventing a solution to the social care crisis.
Pridmore, who is director of the user-led organisation Being the Boss, which supports disabled people who employ personal assistants, told Disability News Service this week that their research could play an “extremely important” role in helping persuade Burnham to follow through on his previous comments on care charges.
She said: “Not only will this report lead to further research on working-age disabled people on charging but it might go some way in supporting Andy Burnham’s end of care charging, making care free at the point of access in line with the NHS.
“This would free up beds in hospitals and enable disabled people to live in their community.”
One service-user interviewed by Pridmore and a colleague told the researchers how they had challenged their council’s charges.
They said: “I cannot tell you how horrific this process was.
“I was in tears, like everyday thinking, ‘Oh my god, I cannot afford this.’ And the debt was going up and up every day.
“So to me it was like this spiralling amount of money that I owed I couldn’t afford in the first place.”
Another participant in the research said: “You could be the same person and present yourself to five different local authorities, and be charged anything from nil charges in one to £200 a week in another.”
Several of those who took part in the research highlighted that claiming disability-related expenses, a key part of the care charging system, was “complex and bureaucratic”.
Among their recommendations, the researchers call for investment in independent disabled people’s organisations to provide “essential advice, support and challenge” to local authorities on care charging.
They also call for increased consistency and clarity in charging policy; improved training for council staff; and for an evaluation of the impact in those few areas where charges were abolished.
The research was funded by the Economic and Social Research Council, with a contribution from the National Institute for Health and Care Research, which itself is funded by the Department of Health and Social Care.
The paper’s other authors were Professor Catherine Needham and Sam Teo.
Picture: Anne Pridmore (left) and Andy Burnham. Picture of Andy Burnham by Lauren Hurley/No 10 Downing Street
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