“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
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
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.

Avinash Shahi
Doctoral student at Centre for Law and Governance JNU

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