Disabled people are paying “a tax on disability” by being forced to fund soaring care charges out of their benefits as the cost of living pushes care users into financial crisis.
Charities and disabled people’s organisations (DPOs), including Mencap, Scope, the MS Society, Inclusion London, Dimensions, and WinVisible, told the Observer that disabled care users are being pushed into severe financial hardship with some forced to go without essential home care because they can’t afford the fees. Others face up to £20,000 of arrears to their local authority, with some seeing bailiffs called in over care fee debts. One DPO said some disabled women are being coerced into sex by acquaintances after turning to them for care because they couldn’t pay care charges.
“Disabled people who are entitled to statutory social care are now confronted with an increasingly impossible choice between essential care or covering basic living costs, including energy to heat their homes or to power their essential equipment, such as wheelchairs and ventilators,” said Svetlana Kotova, director of campaigns at Inclusion London.
“Thousands of disabled people are pursued for social care debt, including through the courts, which they don’t have the money to pay. Making disabled people pay for the care they need is effectively a tax on disability.”
Claire Glasman, co-ordinator of WinVisible, a DPO for disabled women, warns that care charges are making disabled women more vulnerable to abuse by partners or family as they’re forced to become financially dependent on them. “Another result of charges is women dropping out of services, living in squalid conditions or [becoming] reliant for daily help on acquaintances, who may then expect sex which disabled women feel unable to refuse.”
Mike Andrews* has cerebral palsy and relies on 24/7 care for all aspects of his life: getting dressed, cooking, and leaving the house. His care fee used to be £50 a week but has risen to £85. “That leaves me with basically nothing after other bills,” he says. Since day-to-day costs rose last year, Andrews, 39, can’t afford the batteries for his electric wheelchair or the adapted clothes he needs to wear.
He has a young son and thinks constantly of how to keep him clothed and fed while also paying his care fees. “My mental health is shot. I feel like I’m drowning.”
Unlike the NHS, social care is not free at the point of need. Councils require social care recipients to contribute towards the home care they receive in nearly all areas of England, but charges have been rising rapidly in recent years.
Regulations are meant to ensure local authorities leave disabled people with a set amount of money to live off once their social care charges have been paid – known as the minimum income guarantee (MIG). The government agreed to bring the MIG in line with inflation in February after years of freezes.
But charities and DPOs say some councils are failing to take into account recent hikes in energy bills and rent in their calculations, while others aren’t recognising the additional expenses disabled people face, such as accessible transport and specialist food, which have also become more expensive with inflation. The Observer understands that people with learning disabilities are being given lengthy and complex form assessments by their councils without it being explained what they are or being offered support.
“MIG rising with inflation after so many years of staying the same is welcome, but many are shocked to discover that people on meagre benefits are expected to pay for their care, too,” said Jackie O’Sullivan, of learning disability charity Mencap.
Sarah Lewis* owes her council over £4,000 for getting washed and dressed. Last year, the 59-year-old’s charges went from zero to £55 a week. “The assessment was clearly flawed,” she says. “It consists of one page with no assessment of income or outgoing costs.”
Lewis’s multiple disabilities – including fibromyalgia, arthritis and cerebral palsy – means she is unable to work and lives solely off disability benefits. With no way to fully pay her care costs, she now has thousands of pounds of arrears and is struggling to pay other bills. “I have no idea how I’m going to pay [the debt]. I’m terrified my care will be terminated.”
A spokesperson for the Department for Health and Social Care said: “Everyone should be able to access the care they need when they need it. Only people with assets over £23,250 are required to self-fund their care – people with assets under this are eligible for state financial support towards their care costs.”
*Names have been changed
• The headline on this article was amended on 29 May 2023 to refer to England rather than the UK.
