Adults with a disability or mental illness are receiving extra care bills running into thousands of pounds that they say could force them to cut back on food and heating and threaten their social independence.

Amid a care funding crisis, some English councils are quietly increasing charges to people with learning disabilities and mental illness, in effect clawing back welfare payments and leaving some working-age adults with little more than £3 a day to spend.

People facing the charges fear they will be unable to afford enough clothes and worry that basic pleasures like swimming trips will have to stop. One single man living with bipolar disorder said he may have to put down his dog because he will be unable to afford to look after it.

Care charities have drawn up dossiers of charges they describe as a new “care tax” and say it is a result of national underfunding of social care. The Health Foundation has estimated that at least an additional £6bn a year is needed to meet growing demand, rising to £14bn if the country wants to improve access to care and pay more to staff, many of whom earn minimum wage.

Mencap, the learning disability charity, said it had received dozens of “concerning” calls to its helpline about the issue, and its chief executive, Edel Harris, said it was “causing huge distress for them and their families, ​and leaving many without enough money to cover their additional needs”.

Some people are refusing to pay and are considering legal challenges. Care Act guidance says charges must be “reasonably practicable” for people to pay and that the approach to charging should promote “independence, choice and control”.

One of the councils levying increased charges, West Sussex county council, said that while it had previously charged working-age care recipients less than Whitehall rules allowed, increases were now necessary because of “decreased funding from central government”.

Care recipients in the county have seen weekly charges rise sharply, in one case from £5.59 to £83 a week, and in another from £40 to £151 a month. Matthew Welch, 22, who has cerebral palsy, has seen his care contribution more than double to £77, leaving him with just £23 a week from his welfare benefit, a move his mother, Sarah Welch, described as “appalling”.

Sue Livett, the managing director of the Aldingbourne Trust, a charity in West Sussex that provides care for people with learning disabilities and autism, said at least 50 families had complained about increased charges.

A council spokesperson said: “Our charging arrangements follow national guidance and are based on an individual assessment of a person’s financial circumstances. We have asked people to contact us if they will find it difficult to pay so we can work with them on an individual basis.”

A parent in Staffordshire said their family had been hit with a backdated bill exceeding £20,000 for their adult children with learning disabilities.

“It’s disgraceful,” they said, requesting anonymity. “They have no opportunity to go out and earn money on their own. They rely completely on benefits.”

Also in Staffordshire, a young adult with complex learning difficulties who needs round-the-clock care was sent a bill demanding he pay £88 a week towards the costs, equivalent to £4,500 a year. It has to be taken from his universal credit payments and leaves him with just £25 a week for other expenses.

His mother, a hairdresser unable to work during the pandemic, said she was “absolutely furious” and it meant they would not be able to afford enough clothes for her son, which is a particular issue owing to his incontinence, plus it could prevent him from going to the cinema or the swimming pool with his carers.

“It’s a huge effect on his quality of life,” she said. “He won’t have any variety in his day. We are not acknowledging that people are individuals and have needs in their lives.”

Dr Richard Harling, the director of health and care at Staffordshire county council, said the amount people were asked to contribute was “based on what they can afford to pay while still being left with income to meet their living costs”.

He added: “If a person feels they are contributing too much, they can contact us to appeal their financial assessment.”

Social Care Futures, a coalition of care givers and receivers, has received more than 150 reports of rising charges. “Escalating charges must be capped and there must urgently be a significant investment in social care, our lives and freedom,” said Anna Severwright, the coalition’s convener.

The Department of Health and Social Care has been contacted for comment.

‘It’s heartless and cruel’

David Jones and his dog, Meghan, on the beach in Littlehampton, West Sussex. Photograph: Sarah Lee/The Guardian

David Jones, 60, lives alone in West Sussex with bipolar disorder, which 10 years ago rendered him unable to work.

The former newspaper subeditor relies on two hours of support a week to help him keep his flat in order but is facing an increase in his contribution for this from £40 to £151 a month. The money would have to come from his personal independence payment (Pip) and would take up a third of that budget. He said that would leave him choosing between “heating and eating” and it would affect his budget so much that he will have to consider putting down his 14-year-old dog, Megan, which he said would be “beyond awful”.

Pip is supposed to help people with illness, disabilities and mental health conditions maintain norms of everyday life. He said clawing this money back was “just ridiculous”.

“I simply can’t afford it,” Jones said. “This extortionate demand represents 20% of my monthly income from benefits. It has to be outright unfair and a national scandal that the Department for Work and Pensions awards us Pip with one hand, and the county council takes up to a third of it away with the other.

“I would have to cut my food budget drastically and might end up having to go to a food bank,” he said. “I have a dog and if I was going to try and budget for the amount of money [I have left] the dog would have to go.”

He said Megan had been a “lifeline to sanity” during the pandemic and had been “incredibly helpful for my mental health”.

“This [demand] has caused me incredible distress and anxiety,” he said. “There are people in an even more vulnerable position than me suffering with mental health illnesses, autism and learning disabilities and it must be extremely difficult for them to cope with this. It’s really heartless and cruel. I don’t think it’s going to raise an awful lot for the county council but it’s a vast amount for us.”

The council has said central government cuts precipitated the increased charges and it has asked “people to contact us if they will find it difficult to pay”.



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