Adults with disabilities or mental illness receive additional care bills amounting to thousands of pounds which they believe could force them to cut back on food and heating and threaten their social independence.
Amid a healthcare funding crisis, some English councils are quietly raising costs for people with learning disabilities and mental illnesses, effectively clawing back social assistance benefits and leaving some working-age adults a little more than £ 3 a day to spend.
Those charged fear they will not be able to afford enough clothing and fear that basic pleasures like swimming trips will be cut short. A single man living with bipolar disorder has said he may have to put his dog down because he won’t be able to afford it.
Charitable healthcare organizations have drawn up charges which they qualify as a new “healthcare tax” and claim that it results from national underfunding of social assistance. The Health Foundation has estimated that at least an additional £ 6bn per year is needed to meet growing demand, reaching £ 14bn if the country is to improve access to care and pay more to staff, many of whom earn minimum wage.
Mencap, the charity for learning disabilities, said it had received dozens of “worrying” calls to its helpline about the issue, and its chief executive, Edel Harris, said that this “caused enormous distress for them and their families, and left a lot of money to cover their additional needs.”
Some people refuse to pay and are considering legal challenges. According to the Care Act guidelines, fees must be “reasonably practicable” for people to pay and that the pricing approach should promote “independence, choice and control.”
One of the councils that collect the higher charges, West Sussex County Council, said that while it had previously charged working-age care recipients less than Whitehall rules allowed, increases were now being charged. necessary due to “reduced funding from central government”.
Care recipients in the county have seen weekly costs rise sharply, in one case from £ 5.59 to £ 83 per week, and in another from £ 40 to £ 151 per month. Matthew Welch, 22, with cerebral palsy, saw his contribution to care more than double to £ 77, leaving him with just £ 23 a week from his welfare benefits, a move his mother, Sarah Welch, called ” Appalling ‘.
Sue Livett, managing director of the Aldingbourne Trust, a West Sussex charity that provides care for people with learning disabilities and autism, said at least 50 families had complained about the increased charges.
A spokesperson for the council said, “Our pricing agreements follow national guidelines and are based on an individual assessment of a person’s financial situation. We asked people to contact us if they had difficulty paying so that we could work with them on a one-to-one basis.
A parent in Staffordshire said his family were hit with a backdated bill of more than £ 20,000 for their adult children with learning disabilities.
“It’s shameful,” they said, asking for anonymity. “They don’t have the option to go out and make money on their own. They are fully relying on the benefits. “
Also in Staffordshire, a young adult with complex learning disabilities who needs round-the-clock care has been billed demanding he pay £ 88 per week to cover the costs, or £ 4,500 per year. He has to be taken from his universal credit payments and only leaves him £ 25 a week for other expenses.
His mother, a hairdresser unable to work during the pandemic, said she was “absolutely pissed off” and that meant they wouldn’t be able to afford enough clothes for her son, which is a particular problem in this regard. reason for his incontinence, and it may prevent him from doing so. to go to the cinema or to the swimming pool with his carers.
“It’s a huge effect on his quality of life,” she says. “He won’t have any variety in his time. We don’t recognize that people are individuals and have needs in their lives. “
Dr Richard Harling, director of health and care at Staffordshire County Council, said the amount asked of people was “based on what they can afford to pay while still having income to cover their costs subsistence ”.
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 providers and beneficiaries, has received over 150 reports of increased burdens. “The escalation of burdens must be capped and there must be an urgent major investment in social protection, our lives and freedom,” said Anna Severwright, leader of the coalition.
The Ministry of Health and Social Affairs has been contacted for comment.
‘It’s heartless and cruel’
David Jones, 60, lives alone in West Sussex with bipolar disorder which 10 years ago made him unable to work.
The former newspaper sub-editor relies on two hours of support per week to help keep his apartment tidy but faces an increase in his contribution for it from £ 40 to £ 151 per month. The money would have to come from his Personal Independence Payment (Pip) and would occupy a third of that budget. He said that would leave him with a choice between “heating and eating” and that it would affect his budget so much that he would have to consider slaughtering his 14-year-old dog, Megan, who he said would be “over the top. terrible”.
Pip is believed to help people with illnesses, disabilities, and mental health issues maintain standards of daily living. He said getting the money back was “just ridiculous”.
“I just can’t afford it,” Jones said. “This exorbitant demand represents 20% of my monthly benefit income. It must be utterly unfair and a national scandal that the Department of Work and Pensions gives us the Pip with one hand, and the County Council takes up to a third of it with the other.
“I would have to cut my food budget drastically and I might end up having to go to a food bank,” he said. “I have a dog and if I were going to try to foresee the amount of money [I have left] the dog should go.
He said Megan had been a “mental health lifeline” during the pandemic and had been “incredibly helpful to 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 who suffer from mental illnesses, autism and learning disabilities and it must be extremely difficult for them to cope with that. It is really cruel and cruel. I don’t think it will raise a lot for the County Council, but it is a lot for us.
The council said central government cuts had precipitated the fee increase and asked “people to contact us if they are having trouble paying.”