“I don’t need another mother; I already have one,” says disability rights activist Penny Pepper. “She is allowed to insist I put on a warm coat when we go outside, but not my PA.”
Pepper, author of First in the World Somewhere, is emphatic about the distinction between a personal assistant and an informal carer.
A good PA will always know that their employer is ultimately in control of their own life and choices, she says.
Personal assistance is a model of support born out of the independent living movement. It empowers disabled people to recruit and employ PAs directly, as staff, instead of them being supplied by the state or third sector as other care workers would be. About 70,000 people in England between them employ 145,000 PAs. PAs are less regulated than other care workers, although the Care Quality Commission is understood to be looking into the issue.
It’s a paid role, not to be confused with the unpaid, informal care a family member or friend might provide, says Clenton Farquharson, chair of the social care partnership organisation Think Local Act Personal.
“It is about choice, control and independence: living a life other people take for granted,” he says. “My wellbeing is not just that I’m fed and watered like a houseplant; I’m more than that.” He says personal care might be 10% of what a PA does; 90% might be about connecting the person with their friends and colleagues, enabling them to go to work, to the theatre or on holiday.
The trouble with trying to define what a PA does is that their roles are as unique as the individuals they work for. For Pepper, a PA might help with admin tasks, drive her around and tidy the house, as well as provide personal care. She looks for PAs who are confident and unfazed by challenging situations; in the past that’s meant helping with last-minute appearances on Newsnight or being on-hand when she donned nipple tassels and performed burlesque at the Royal Festival Hall in London.
Vicki Moffatt has been PA to 50-year-old Martin Symons for about eight months after replying to an advert in a local paper. She helps with transportation and mobility and personal care as well as accompanying him to disability campaign group meetings and taking minutes. “We have a debrief in the car on the way home – I find it really interesting,” says Moffatt, who is also a foster carer and has worked in institutional care. The role provides flexibility but it’s hard work.
“In some ways the relationship [between a PA and client] has to work better than it would even in a marriage,” she says. “I’ve met people who have really just wanted a human robot and the relationship hasn’t worked.”
Symons, who employed his first PA eight years ago, agrees that finding the right fit can be challenging. A keen outdoor adventurer, he looks for people who are enthusiastic, trustworthy and adventurous. Trial shifts and probationary periods can be a helpful strategy for finding the right person, he says.
Tom Shakespeare, professor of disability research at the University of East Anglia, studied PA relationships last year and found that all participants reported some dissatisfaction. This mainly stemmed from practical problems (one PA didn’t like her client’s six pet birds and felt uncomfortable having to deal with them), personal differences and the relationship feeling too intense and claustrophobic. Being mindful that one person’s home is another person’s workplace is crucial.
In her 26 years of using this kind of support, Pepper says her PAs have included artists and “creative types” as well as mature students who enjoy the flexibility the role can provide around their studies. She says she has had wonderful PAs from eastern Europe and has voiced her concerns over how Brexit could affect recruitment.
Another worry is getting funding for a PA. Until 2015, they were funded through the Independent Living Fund, but this was scrapped by the government and it now falls to local authorities to provide personal budgets to those who qualify for social care funding.
“It is now a postcode lottery of how different local authorities apply it,” says Farquharson. Furthermore, the ongoing crisis over payment for sleep-in shifts has led to some disabled people receiving claims for back pay for PAs.
Matt Wort, a partner and health and social care expert at Anthony Collins Solicitors, has warned of an “alarming lack of clarity in the guidance” on sleep-in shift pay.
Moffatt says that for a lot of staff it “makes sense” to sleep at an employer’s house if they are going to be on a early shift the following day and having to travel back home could mean losing out financially.
Farquharson says the prospect of paying for historical shifts would be “a real burden”. “It’s a frightening prospect because for some people it could stop them going out and connecting with their community because they will worry about how to pay for it,” he says.
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