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The right to choose wrongly

Posted: 21 November 2002 | Subscribe Online


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.

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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.

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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.



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