New research has exposed the financial hardship and emotional harm caused by charging working-age disabled people for their care and support.
It is believed to be the first time that research has focused solely on how care charges impact on working-age adults in England.
Although it was only a small study, Inclusion London – which supported the research – said this week that it “evidences and exposes the cruelty of the social care charging system” and shows how the charging system “makes people powerless, demeans them and makes them more dependent”.
Participants in the study spoke of the considerable stress caused by the poverty and fear of poverty they experienced due to rising care charges.
The research, carried out by former BBC journalist Claire Bolderson for a masters dissertation, also suggests that charging can inflict “emotional harm” on disabled people and carers.
Her study says: “People drawing on care and their family members feel devalued by the unequal and often humiliating way in which they are treated by a charging system that undermines autonomy and independence.”
Of seven interviewees, all of whom lived in different local authority areas, two had recently ended their council-funded support after “significant increases” in how much they were being asked to pay.
Those with no family living nearby, or who were estranged from their family, appeared to live “in the most disadvantaged circumstances”, with the study adding: “This included those who had given up their care because of the scale of their assessed contribution, both of whom described emotionally as well as materially deprived lives in which they were very isolated.”
One of these two participants said: “I wash my hair once a month [that’s] why it’s always covered. Shower maybe once or twice a week. Flat is usually a Tip. I don’t eat great.”
The other said: “I’m missing my appointments… I’m missing getting my medications, I’ve got no social inclusion.”
One of the key concerns examined in the study is that most disability benefits are taken into account in the means test that determines how much a disabled person should contribute to their support.
For several disabled people who took part in the study, the percentage of their benefits deducted through the care charge was “significantly higher” than the basic rate of income tax, which crystallised their feelings about how society values those who cannot work.
Bolderson says in the study that the anger about charging was most apparent when participants discussed disability-related expenditure (DRE), disability-related costs that should be considered by a council when assessing how much a disabled person can afford to pay in care charges.
One participant in the study spoke of the “powerlessness” and “humiliation” she felt during lengthy negotiations over what spending could be included as DRE, which can “require disclosure of the most intimate personal care needs”.
One parent said she had asked for a small allowance under DRE to help pay for a particular type of sanitary wear for her daughter, but the local authority (LA) said a claim could only be made for a different item which did not meet her daughter’s needs.
The study says: “This was not a case of suggesting a cheaper product. It was the wrong product, accompanied by the LA arranging what the parent felt was an unnecessary and intrusive medical appointment for the young person.”
It adds: “Throughout the interviews, participants implied that the negative impacts of care charging are intrinsic features of the social care system.
“Without exception they portrayed that system as unhelpful at best, and openly hostile at worst.”
Some of the participants described living conditions of “extreme poverty – eating poorly and irregularly and being unable to afford heating through the winter”, while all three parents who were interviewed said they had been forced to subsidise their disabled adult son or daughter so they could have “some quality of life beyond a basic existence”.
Among the recommendations, the study calls for local authorities to review their charging systems to ensure they are cost-effective and “fair and transparent” for the service-user.
It also suggests reforming the means test to exclude all disability benefits from the income assessment.
In her conclusion, Bolderson says her research “provides some evidence that care charging can lead people assessed as needing care to reject it on cost grounds with potentially serious implications for their health and welfare”.
Svetlana Kotova (pictured), Inclusion London’s director of campaigns and justice, said: “This research evidences and exposes the cruelty of the social care charging system.
“It shows not only how the system pushes disabled people into financial hardship but also demonstrates emotional harm done to those who have the highest support needs.
“The system makes people powerless, demeans them and makes them more dependent. This is wrong.
“This research is [more] powerful evidence of why the system needs to change urgently.
“This is why we have been calling on the government to scrap care charges and in the interim stop taking disability benefits as income for the purpose of charging.
“This research must be a starting point for a more comprehensive study, and we will be looking to work with academics to build on it.”
Photograph by Jon Abrams
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