Many are facing a significant rise in the money they have to pay towards the support they receive.
Disabled and vulnerable adults in England are being hit by a steep rise in the amount they have to pay towards their care, BBC News research reveals.
Some adults with learning disabilities are paying thousands of pounds extra a year, with six councils doubling the amount of money they receive.
In half of 83 areas that responded to a BBC request, bills across all users have risen at least 10% over two years.
Directors of council care services blame years of government funding cuts.
Saskia Granville was shocked when, earlier this year, her care charges increased more than 400% – from £92 to £515 a month.
She has a learning disability and lives in supported accommodation in Worthing, West Sussex, but fears the charges will curtail her independence.
“When Mum told me, she just burst out into tears,” Saskia says.
“It makes me really upset.”
A sum of almost £1,500 was also taken out of Saskia’s bank account as a backdated payment, in March, leaving her in debt.
Her mother, Bobbie, says: “Without my intervention, she wouldn’t have had any food that week.
“She wouldn’t have been able to pay her gas, electricity or water bills.”
Bobbie is challenging the charge increase but says there has been no notable progress.
The rise has also left Saskia worrying whether she can continue playing football each week – and coaching a girls’ team – because of the train fare and team subscription.
“It’s very important because it’s my favourite sport,” she says.
“I love going.”
West Sussex County Council said its charging arrangements, based on “a person’s ability to contribute towards the financial costs of [their] care”, “follow national guidance”.
13% average increase in how much disabled and frail people asked to contribute, in two years
83councils responded to BBC request for information (151 were asked)
Equivalent £500rise per person with learning disabilities, in 22 of those councils
Source: BBC Freedom of Information requests, comparing 2018/19 with 2020/21
BBC News sent 151 councils a Freedom of Information request asking how much those living in the community had to pay towards their care.
In the 83 that responded, the amount disabled and frail people are expected to contribute has risen from £369m in 2018-19 to £420m in 2020-21.
And the rise is particularly apparent for those with learning disabilities, who often need greater levels of support.
In 22 councils, the charges have risen by the equivalent of £500 per person supported, since 2018-19.
But in other areas, the charges have fallen since the start of the pandemic, during which time many people have had their levels of support cut.
And in one council, Hammersmith and Fulham, residents are charged nothing for their care.
Matthew Willis has a severe learning disability and Smith-Magenis syndrome, which has autism-like features.
His mother, Lulu, says this can lead to behavioural challenges, as he becomes frustrated at struggling to communicate, such as “meltdowns” that can last for days and include him self-harming and breaking down doors.
Respite services, where support workers take care of Matthew, have provided an important change of scenery and helped her own mental wellbeing.
But this is no longer something the family can afford – as Matthew’s care charges have now risen from about £20 to more than £300 a month.
“It is totally immoral,” Lulu says.
“I want my son to have a meaningful life – and the money from his benefits goes towards paying for that.”
Jackie O’Sullivan, from the charity Mencap that represents people with learning disabilities, said the charge rises meant “the least well off in society [having] to make up for the shortfall [in funding]… that should come from the government”.
Many were still receiving less support than before the pandemic but “having to make tough choices between food and heating, and paying for care”.
And only 6% of those with learning disabilities were in work, making finding the extra money “impossible” for many.
Anyone who receives care from their council will have a very high need for support and a low income. So it is a sign of the acute financial pressures faced by local authorities in England that there has been such a significant increase in the money raised from people needing services.
Most who receive council support rely on benefits, so finding extra money to contribute to care, which is vital to their quality of life, can cause real hardship.
The pandemic has increased the demand for support and the financial pressures on a care system already in crisis. For many, it is perhaps one of the most shameful signs of that crisis that it is people in the toughest of circumstances having to dig deeper to plug the financial gaps.
The prime minister has promised he will reveal his long-awaited plans for reform by the end of the year. But Saskia, Mathew and many others need investment in a care system that will help them lead the best lives they can, right now.
Cath Roff, of the Association of Directors of Adult Social Services, said councils were “really stretched” after “10 years of austerity”.
Calling on the government to “bring forward [social care] reform now”, she said raising care charges was “not what any local authority would want to do – but… we need to stay solvent”.
“We now have Covid, which has added extra pressures,” she said.
“We’ve got people coming forward with increased needs – [and] we have a workforce crisis.”
The Department of Health and Social Care said it would bring forward proposals to reform the adult social-care system “later this year”.
And since the start of the pandemic, it had “committed over £6bn to councils, through un-ringfenced grants to tackle the impact of Covid-19 on their services, including adult social care”.
Social care, the system for helping both disabled and older people, is in a bad way. Demand is up, financial support is down. For years, governments have promised a solution. Now, Boris Johnson has said he will set out plans for reform by the end of the year.