Almost 90,000 people in England have fallen behind on costly care payments as the cost of living crisis deepens, and hundreds now face action from aggressive debt recovery agencies, openDemocracy can reveal.

Of the 87,421 adult social care users known to have missed at least one payment, 60,248 have been issued with a reminder or a warning notice.

This latter figure equates to a quarter of all chargeable adult social care users, which includes those who are elderly or have a disability, across the 78 English councils that responded to openDemocracy’s Freedom of Information request.

The real figure is likely to be even higher, as 73 councils with responsibility for adult care either failed to respond or did not respond in full.

Twenty of the councils that responded to the FOI request have referred a total of 632 current adult care users to debt collection agencies.

A further 59 councils have launched court proceedings to recover care debt on 830 occasions over the past three years, though not all were against living care users. Some would have been against the estates of deceased clients, for example.

The findings come as concern grows over care charges. Campaigners are now calling for local authorities to follow the lead of Hammersmith and Fulham Council, which abolished fees for at-home care in 2015.

“There is a link between mental ill-health, mental health impairments, and debt,” Helen Rowlands, a co-founder of Cheshire Disabled People Against Cuts, told openDemocracy.

“We know from the conversations we have with advocacy workers within disabled people's organisations across England… that those problems are intensifying. And we also know that social care charging is a key factor within that.”

A postcode lottery

In England, adults receiving council-funded social care must pay towards the costs, with contributions based on income and savings.

Councils cannot impose charges so high that an individual’s income falls below the national minimum income guarantee, which rose by 3% last month after being frozen since 2016. But there is still a ‘postcode lottery’, with the type and level of care offered – and at what cost – differing between local authorities.

Nearly half of Liverpool’s 3,649 current chargeable care users have been issued with a reminder over late payments. The council did not make any referrals to debt collectors or start court proceedings, which a spokesperson explained as “a compassionate approach” on account of the pandemic.

In West Sussex, 59% of the 4,644 chargeable adult social care users have been issued reminders. The council hasn’t used debt collectors but has initiated four court cases in the past three years.

Birmingham City Council, which did not respond to openDemocracy’s FOI request, made more than 3,500 referrals of social care users to debt-collecting agencies in 2020-21, down from 4,499 the year before.

Concerns over care charges were raised in February, when the Local Government and Social Care Ombudsman upheld a complaint against Essex County Council for repeatedly invoicing a woman for thousands of pounds she didn’t owe.

The woman, who had a history of depression, paid the council £3,300 before killing herself. Though the ombudsman said it was not possible to determine whether the persistent invoices had contributed to her death, they found the requests for payment had caused “unnecessary distress”.

‘Permanently in debt’

Local authorities can raid part of an individual’s disability benefit payments to contribute towards their care costs – leaving people with little income.

This was the case with Nick*, who has severe learning difficulties. Due to a reassessment of his needs that coincided with West Sussex Council scrapping its previous cap on care charges, Nick’s care bills rose by 175% last year – eating up much of his disability benefits.

“It’s immoral. We should be thinking about how we improve the lives of disabled people, not how we limit them, said Melanie*, Nick’s live-in carer. “And by cutting back their money, it limits them hugely.”

A spokesperson for West Sussex Council said care charges were based on national guidance, and had increased from January 2021 after “a decision was taken to apply the minimum statutory rate for people of working age, as advised by the Department of Health and Social Care, for the amount of income someone must be left with for day-to-day living”.

But Melanie disagrees that the amount Nick has been left with is enough to live a normal, happy life. “He doesn’t have money now to do things that we would do,” she said. “He can’t go have a takeaway with his mates.”

The fear of losing disability benefits puts some people off from applying for adult care support.

Janet, who has depression and anxiety, is the sole carer for her husband, Keith, who has uncontrolled epilepsy, a deformed arm, mild learning difficulties and partial sight. They have asked openDemocracy to withhold their surnames.

Janet has to help Keith with all personal care needs, including dressing and using the toilet, and keep him safe during his seizures. She would like to get adult care funding from their local council to pay for an assistant, which would allow them to be more independent and live a more normal life – but the council would likely take money from their benefits.

“We are permanently trapped financially on the bare minimum and permanently struggling financially – permanently in debt,” Janet told openDemocracy.

“We don’t have any help from the local authority because they would take part of the care component of [disability benefit] to pay towards it… meaning we would be worse off than we are now.”

Campaigner Claire Glasman is a founder member of WinVisible, a community organisation representing women with visible and invisible disabilities.

She said care charges were a form of “violence against women”.

“Those of us with high needs get the highest charges, including women of colour already hit by health inequality,” she said. ”Women who drop out [of care] live in squalor or are forced to rely on acquaintances or men who often become abusive, shortening our lives.”

Referring to the high proportion of people who are behind on care charge payments, a spokesperson for Liverpool City Council said: “Work has now started to improve this situation, including planning the introduction of direct debits as a payment method.

“We’re confident that this will see a return to a normal level of arrears.”

*some names have been changed