Care charges mean disabled people are facing unlawful discrimination on ‘unparalleled’ scale, says report

Disabled people across England are continuing to face unlawful discrimination and inequality on an “unparalleled” scale due to “unjust” social care charging policies, according to “deeply concerning” new research.

The research by disabled people’s organisation Disability Law Service (DLS)* suggests that the proportion of disabled adults who are being charged for their non-residential care is increasing year by year.

The report** also suggests that local authorities are incurring “significant” and increasing costs of collecting these charges.

Most of those charged are paying “extortionate amounts” to local authorities who fail to take their individual needs into consideration, the report says.

Its publication came just days before the new Labour chancellor, Rachel Reeves, told MPs that it would “not be possible” to take forward reforms to adult social care charging that were repeatedly delayed by successive Conservative governments (see separate story).

The DLS research – which included freedom of information requests to local authorities, questionnaires, and focus groups – concludes that rising home care charges are having a negative effect on the physical, mental and emotional well-being of disabled adults and their family members.

It also found that “very few” councils – just three of the 40 sampled – were fulfilling their public sector equality duty when imposing charges on disabled adults, for example by failing to assess the costs and benefits of their charging policy; not using discretion in waiving charges; and failing to consult disabled people and disabled people’s organisations.

DLS said the point of the research was to make the case for the abolition of home care charges for disabled adults in England.

Results from a DLS questionnaire filled in by nearly 100 disabled adults who pay for home care across England showed they are sometimes unable to afford their basic needs, such as food and heating, because of home care charges, and are falling deeper into debt.

Nearly half of respondents said they were sometimes unable to afford to meet their basic needs because of home care charges.

And of those who had not fallen into debt, it was mostly because their family had covered the shortfall, supporting them financially while they live at home.

Nearly three-quarters of those who responded to the questionnaire said increasing home care charges had had a negative impact on their lives.

One respondent said they “felt suicidal”, as if they were “going mad with stress”.

Another said they had been “left with less money to enjoy independence such as leisure activities”, and a third respondent said they had experienced “stress and sleepless nights”.

The research, carried out over the last three years, also compared the experiences of disabled people in local authorities that charge for care, with the one English council that does not, Hammersmith and Fulham in London.

The decision by Hammersmith and Fulham, taken in 2015, had allowed disabled people to live more independently, the report says.

It found that removing charges in the borough has had “profound positive outcomes” for those who have benefited, providing them with “greater financial resources to spend as they wish” and reducing the negative physical and mental health effects associated with charges.

The report adds: “It has transformed their lives for the better, granting them greater independence and freedom.”

The report includes several case studies of disabled people who describe the impact of care charges on their lives.

One disabled woman, Aneta, describes in the report how she now has to rely on her family to provide her with care because she could not afford the charges she was asked to pay.

She no longer has a daily bath; sometimes she has to skip meals because of the pain caused by preparing food; and she can only leave the house in the evenings because that is when her family are available to support her.

She says: “I must live my whole life in pain, in a cold home, with no help, alone. Before, at least I had some help, which improved my mental health.

“I am not suicidal currently, but I recognise suicidal symptoms returning.

“If care charges were abolished, life would be much easier. I could have my daily bath, my warm meal, I could go outside, because otherwise I do not get fresh air or sun in my room.”

The report contrasts her experience with that of Victoria, who works as a radio producer, and lives in Hammersmith and Fulham, receiving 24-hours-a-day support – free of care charges – from a team of personal assistants.

She says: “Abolition made me feel more integrated in society. Now that I no longer have to endure financial assessments, my quality of life has improved.

“For me, it is morally wrong to charge Disabled people for a service that is absolutely vital to their quality of life.

“Social care is not a luxury. It is a human right.

“Without social care, some Disabled people will have no quality of life whatsoever.

“If you charge Disabled people for their care, you are taking away resources from them and driving them further into poverty, reducing their independence.”

She adds: “Many politicians say they want Disabled people to improve their lives but, at the same time, they still put these barriers in place for Disabled people to do just that.

“Charging Disabled people for their care is effectively a tax on disability.”

*DLS provides free legal advice, casework and representation for disabled people and carers across community care, employment, housing, discrimination, public law and social security.

**Ending the charging system for non-residential care for Disabled adults in England

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