For the past 10 years, Edwina McCarthy, 63, has lived contentedly in her own home in south London with the support of personal assistants she employs through a personal budget for needs arising from cerebral palsy. In many ways, she is an advertisement for the merits of the personalisation of care and health.
But McCarthy feels her lifestyle is under threat. “They tell you, ‘there’s the money. You can be independent’,” she says. “But you can’t. They monitor every action you take.”
What bothers McCarthy is that, in common with more than 30,000 other people with personal budgets, her funding is no longer sent to her bank account as a direct payment, but is loaded on to a prepaid card. Not only does this enable her local council to check exactly how she is spending it, but it gives it the power to veto expenditure it disapproves of.
The concerns arise as a consultation closed last Friday on proposals to extend the right to a personal budget to up to 350,000 more people in England living with long-term physical or mental health conditions, including dementia and learning disabilities. Speaking at a conference last week, NHS England chief executive Simon Stevens said: “We’re going to put a lot of welly behind personalised care over the next few years. It’s central to the future of the NHS.”
When personal budgets became available for people with long-term support needs, in the early 2000s, much attention focused on the freedom they gave individuals to pay for things that worked best for them. Instead of going to a day centre, they might pay for art classes, or buy fishing tackle, or even get a dog to get them out of the house.
An example cited in the recent consultation was of a 90-year-old woman with dementia who uses a budget to pay for care at home, osteopathy treatment and respite care for her family. Since she was given control in this way, she has had no emergency admissions to hospital or residential care.
McCarthy uses her budget to employ four personal assistants. She used to receive the funding direct from the government’s independent living fund, which closed in 2015, but her local council, Merton, has moved her on to the prepaid card. Yoko Wilson, who helps McCarthy with payroll administration, describes the system as “ridiculously cumbersome”. She says: “More importantly, it feels as if her choice is being taken away from her.”
A survey last year found that almost all councils issuing the cards to personal budget-holders placed restrictions on how they could be used – banning not only spending on alcohol, gambling, dating or adult services, but in some cases also withdrawal of cash, and payment for gas and electricity, petrol, video games or financial investments. One in three councils stipulated that all spending must be deemed to comply with the individual’s care and support plan.
Critics say such control is contrary to the spirit, and arguably to the letter, of personalisation legislation. Jenny Morris, a member of the Independent Living Strategy Group (ILSG), a network of disability organisations that carried out the survey, says: “Local authorities seem so concerned about wrongful or fraudulent use of direct payments that they have forgotten about enabling people to have choice and control over the support they need.”
The ILSG survey, based on freedom of information returns by all 152 English councils responsible for social care, found that 69 (45%) were using prepaid cards for some personal budgets. More than 32,000 people had been issued cards, out of 630,000 eligible for long-term care and support, although the ILSG believes that proportion will have since risen sharply. Morris says the number of councils offering no alternative to cards is growing. Of the 69, five said cards were compulsory, and 17 said the option of payment into a bank account was available only on request or in specific circumstances.
“We’ve been told this isn’t lawful and it certainly goes against the original intention of direct payments.”
Luke Clements, professor of law and social justice at Leeds University and a specialist in care legislation, says statutory guidance is clear that payment of a personal budget into a bank account should always be available on request and where “appropriate to meet needs”. Where a card is issued, the guidance states, it is “important that … the person is still able to exercise choice and control – for example, there should not be blanket restrictions on cash withdrawals”. Clements says that in his view, prepaid cards have “advantages for councils but not necessarily for recipients”.
According to the Prepaid Cards Network, which represents both card providers and organisations contracting with them, including 42 local NHS bodies, councils alone load more than £500m on to cards annually, much of it for welfare payments. The ILSG calculates that the 69 councils it found to be using cards had spent a total £1.5m setting up the schemes and were spending about the same again annually on contract fees. Typically, a charge is levied by the card provider for every upload or payment, on top of a basic monthly fee, with average total annual costs of £91 a card.
The Association of Directors of Adult Social Services has promised to ensure that use of cards does not compromise the principles and practice of personalisation. “We recently circulated [the survey] to our members and are actively considering its findings to determine what further advice we can provide,” says Glen Garrod, Adass president.
A spokeswoman for Merton council says: “While we cannot comment on individual cases, we have written to all our direct-payment customers to explain that we are auditing payments to ensure that the transition to the new prepaid card has been successful.” As the council has a duty to manage public funds, “cards are issued on the understanding that payments are only spent on services that meet the individual’s specific needs as set out in their agreed support plan”.
A spokesperson for the Department of Health and Social Care says: “People have a right to ask for a direct payment to meet some or all of their needs and we expect all local authorities to prioritise choice and control in administering these.”
Back in Colliers Wood, McCarthy says: “I understand that they need to keep an eye on the money, but for God’s sake it’s just too much. It’s not as if I am going to spend it all on a big night out – though that might be a good thing.”