The right to choose wrongly

Health Secretary Alan Milburn’s announcement last month
that direct payments are to be extended to all older people raises
some interesting practical questions.

Not least is how widespread the take-up will be if there are not
sufficient resources for support services. Milburn said he would be
giving £9m to older people’s organisations and other
voluntary bodies “to make a reality of direct payments”. But while
at present only about 4,000 disabled people receive direct payments
there are more than 11 million older people in the UK. Extending
direct payments to this group will potentially represent a very
significant change in the way services are provided, and additional
funding of £9m may prove to be the very tip of an enormous
iceberg.

But submerged below the surface of the coming debate, so low
that the ripples aren’t even visible yet, there is another
question. Direct payments are spent on employing a personal
assistant. Personal assistants engage in what can be the most
intimate kind of care in recipient’s homes and they often
work alone and unsupervised. Yet, bizarrely, they are not subject
to the rigorous registration process that all other social care
staff will, in time, have to submit to.

The General Social Care Council is the body responsible for
registering and regulating all social care staff. Its primary aim
is the protection of the people who use social care services. Yet,
when the GSCC was being set up, the National Council for
Independent Living lobbied strongly against personal assistants
being included within its remit. To date, personal assistants have
still not been mentioned as a target group for the watchdog.

Opponents argue that registration would be an interposition
between the user and the person they chose as their personal
assistant. Direct payments are said to empower those who receive
them: they, not the local authority, decide who to employ and what
they are required to do. The disabled – or older – person is the
employer.

According to Jane Campbell, one of the people who led the NCIL
campaign: “We felt that direct payment employers should have the
absolute choice over whom they wanted to employ. It was felt that
if we went down the registration route local authorities might
insist that we only employ PAs who were registered or registerable.
This would narrow our choice.”

“Disabled users campaigned hard for direct payments in the first
place, against a great deal of resistance. Registration for direct
payments employees would drag us back into the administrative model
of disability.

“Independent living is about a disabled person living their own
life,” she says, “and who we need to employ depends on that
person’s economic, social and intellectual situation. We
don’t want to compel people to employ those who are
unregistered but we do want everyone to have a choice.”

Officially, the GSCC doesn’t see registration for personal
assistants as a remote prospect. The scale of its existing task is
daunting – processing more than one million staff who might take a
decade to register. From April next year the register will open
with the first three government-determined categories: qualified
social workers, child care staff and managers of residential homes.
However, if cases of abuse start to appear then the GSCC might be
forced to rethink its priorities. Unfortunately, the abuse of
elderly people by carers and relatives – particularly in their own
homes – remains largely hidden.

At the moment the choice of personal assistant is only limited
by the people available and looking for work. Some disabled people
argue that having access to the full range of potential employees
is essential to meeting their needs. One disabled woman employs two
personal assistants with criminal records. That, she says, is her
informed choice; she is happy with it, yet they might find it
difficult to get on a register. Another disabled person is a
quadriplegic biker. She recruits among the biking community – not
the kind of people, she believes, who might want to register.

On the other hand another disabled person says that she had
already rejected as a personal assistant someone whom, she was
later advised, she should “not touch with a barge pole”. Might that
person’s defects have prevented them from admission to a
register? An alternative to full registration might be a code of
conduct for personal assistants, but this is informal and difficult
to police.

One disabled person who favours registration is Christine
Barton, a GSCC member but who speaks as chairperson of the Direct
Payments Scheme Steering Partnership. She says that direct payments
were a means of helping disabled people to live in their own homes
and, given that, the argument about protection of vulnerable people
tips in favour of registration.

And, of course, mandatory registration for personal assistants
may represent a step towards the users of direct payments becoming
registered as employers by the National Care Standards Commission.
Hence independence, choice and empowerment could get a cold,
regulatory shower.

Barton, however, would welcome being a registered employer.
“It’s a two-way process,” she says. “Just as there can be bad
personal assistants, there can also be bad employers.”

And, as she points out, the take-up of direct payments might
well dramatically increase if support services helping people to
use them were better resourced. In Sheffield 110 disabled people
receive direct payments. At least 70 per cent of them, Barton says,
are not people who have ever had employer responsibilities and as a
result have little or no familiarity with matters like contracts,
job specifications, staff selection or national insurance. Support
schemes – often funded by local authorities but provided by the
voluntary sector – can help people handle these technicalities.

Mervyn Eastman, director of Better Government for Older People,
says that the crucial questions to be asked about the extension of
the direct payments are: where do personal assistants come from,
who screens them, and if there is no screening what does that say
about public protection? He sees a contradiction between an
unregulated personal assistant market and the emphasis on making
abuse of elderly people a bigger priority. At the same time, he
also recognises that direct payments should not be administered in
a way that becomes oppressive and intrusive.

Maybe there is a glimmer of compromise. While in most parts of
the social care field, the inability to register would bar someone
from working in the field, it could be that, given the special
nature of direct payments and the philosophy behind them, disabled
and elderly people could have a choice – to choose someone who is
registered (and being so might be a selling point for future
personal assistants) or someone who is not. Then if user and
personal assistant agreed, the latter could always apply for
registration.

There is a precedent from the child care field. Registration was
introduced for childminders more than 30 years ago. They do not
fall under the GSCC but under Ofsted. They are registered,
regulated and can be struck off. It is not illegal to employ
someone who is not a registered childminder but it might be a
perverse parent who chose to do so.

Even the thought of registering personal assistants may be a
long way off. But as direct payments spread, very slowly the
argument about registration may become irrelevant. Those disabled
people who lobbied a couple of years ago may come to be seen as the
voices of a certain time. A new lobby of elderly people will add
their voices to the argument. If they and disabled people can
persuade local authorities that direct payments really are about
meaningful choice, it may turn out that it would be a perverse user
who would not plump for a registered personal assistant.