Our way or no way

Direct payment schemes can make a positive contribution to care,
but what happens when the service user disagrees with the
practitioner about how funds should be used? Barbara Trimblett
talked to Mike George about acase in which the user and her husband
had strong views about the type of care they wanted

On the evidence available so far, it seems clear that some
disabled people, and carers, value direct payments schemes, and
find that the freedom and control these schemes offer vastly
outweighs the administrative burdens involved in directly employing
their own care staff. For their part, local authorities have also
found direct payments to be a useful option, particularly for
people with complex needs, where the costs of substantial care
packages can be topped up with finance from the Independent Living
Fund (ILF).

From what is known, most individual direct payments schemes work
well, but, perhaps inevitably, some probably don’t. And when this
happens it can create conundrums for social services. Could they or
should they intervene, and if so, under what circumstances? With
the exception of corruption or other abuses of funds do they even
have the right to “interfere” in what is an essentially private
arrangement between disabled people and the staff or agencies they
employ?

This dilemma has been on Barbara Trimblett’s mind for several
months. She is a care manager who helps to facilitate direct
payments in Greenwich, and has faced problems with the arrangement
of Vicky and Dave [not their real names].

Mrs Boyle has a debilitating neurological condition and received
a care package until her husband, who is the main carer, was unable
to carry on coping and she was admitted to a nursing home. Although
her condition continued to deteriorate, both she and her husband
were adamant about wanting her to return home. Consequently,
Trimblett carried out a care assessment, as did a district
nurse.

“I felt that it would be very difficult to arrange another care
package. She needed 24-hour attention, and possibly because she was
very light-sensitive, they both insisted that the care had to be
provided in semi-darkness. They were also extremely precise about
how they wanted the care to be given, they had their own routines
and weren’t prepared to be flexible,” she says.

Consequently, Trimblett, together with district nurses, the
couple’s GP, and an occupational therapist, agreed that a direct
payments scheme should be explored. Mr and Mrs Boyle were in
agreement, and became markedly more co-operative, she says, even
accepting the fairly strict medical procedures which the district
nurses insisted had to be followed on their visits.

After substantial effort, funds were obtained from social
services, the local health authority, and the ILF, and the scheme
was set up about nine months ago, after the couple completed the
various documents covering the agreement. However, with regard to
the core element of the arrangement, the employment of a personal
assistant, Trimblett says Mr Boyle appeared to be very vague about
the person specification and the job description. Mrs Boyle was
also unwilling to be specific. This created some unease, which was
heightened when, just before Mrs Boyle left the nursing home, they
decided that they did not want the ILF portion of the funding.

“I was beginning to become concerned at this point, because,
from what I knew, the couple had very fixed ideas about how the
care was to be delivered, and under what circumstances. I was
worried that this situation might lead to unreasonable demands
being placed on a personal assistant, to the extent that the nature
of the employment might become abusive. Also, they had refused our
offer of agency help with payroll administration. However, there
was relatively little I could do about this, though I did offer
them a lot of information about how direct payments schemes work,
about good employment practices, and about agencies which might
offer safe and experienced staff,” says Trimblett.

She had already told the couple that she would oversee the
implementation of the arrangement, and would be in regular contact
with the district nurses who would visit three times a week. So
once Mrs Boyle was back home, Trimblett was kept in touch through
the nurses and she visited the couple fairly regularly. As a
result, she says, she knew that they had engaged an auxiliary
nurse, whose previous employer was somewhat less than enthusiastic
about her skills and commitment, “I’d also been told she was quite
malleable, which no doubt suited Mr and Mrs Boyle, but which was
worrying,” she says.

“In the event, nothing untoward seemed to happen, though it was
nearly impossible for me or the district nurses to be sure about
this. However, a few weeks later I found out that the personal
assistant had left, or had been told to leave. So I immediately
gave permission for them to use the funds to employ agency staff on
a temporary basis, though there was some delay before Mr Boyle did
so, which caused us further concern.”

However, Mr and Mrs Boyle are now employing another, more
permanent, personal assistant, and Trimblett says that both she and
district nurses feel more confident about the arrangement.

“I’m able to close the case now, because it’s a good
arrangement. Usually, I wouldn’t have kept the case open for so
long, but I felt it was my duty to maintain some degree of
oversight because of the concerns we’d had. This case has certainly
raised a lot of questions about my responsibilities and duties of
care, in an area where the whole idea is for disabled people and
carers to make their own arrangements,” she concludes.

Case notes

Practitioner: Barbara Trimblett

Field: Physical disabilities team

Location: London Borough of Greenwich social services

Client: Vicky and Dave Boyle are in their early 40s: she has
been suffering from a debilitating neurological illness for many
years. They had been receiving a social services care package for
some time, but as her condition worsened it became impossible for
her husband to continue to provide the 24-hour care that was
needed. Consequently, she was admitted to a nursing home, where her
condition continued to deteriorate.

Case history: Both she and her husband wanted her to return
home, and at this point Trimblett and her health colleagues
examined the possibility of a direct payments scheme, using funds
from social services, the health authority and the Independent
Living Fund (ILF). The funding was obtained, Trimblett provided
advice on obtaining a suitable personal assistant, and Boyle
returned home. The couple had very precise requirements for the
work to be undertaken, and engaged a personal assistant. At this
point the couple decided that they did not wish to receive the ILF
top-up funding.

Trimblett maintained involvement because the arrangement
appeared to be unstable, and because Mr Boyle was very vague about
how it was working. The district nurses, who visited regularly,
were also concerned about the nature of the arrangement. After
about a month the personal assistant left, and although Trimblett
tried to arrange for temporary cover from an agency, the couple
were left without help.

Dilemma: Could Trimblett have tried to intervene more, in what
was essentially a private arrangement between the Boyles and the
personal assistant?

Risk factor: Without effective help Mr Boyle’s ability to cope
would have been compromised, and his wife might have had to be
admitted to hospital.

Outcome: They have a new personal assistant, and the situation
has improved.

Arguments for risk

– Mrs Boyle’s condition is not readily amenable to medical
intervention, and both she and her husband have discovered and
determined, over a number of years, what forms of care and support
both of them need.

– Similarly, they have a right to express these desires,
especially as Mr Boyle continues to be the primary carer.

– They are both very capable.

– Mrs Boyle clearly wanted to move back home and stay there for
as long as possible, as did her husband.

– Mrs Boyle’s condition and well-being were being monitored very
regularly by district nurses.

– There were no indications that the direct payments funds were
being misused or abused.

– Once the arrangement had been agreed by all parties, it is
questionable whether social services could or should have
intervened, unless either Mr or Mrs Boyle were at significant risk,
and had requested social services assistance.

Arguments against risk

– The couple were co-operative when discussions were taking
place about the arrangements which would enable Mrs Boyle to leave
the nursing home, but this co-operation was far less evident once
she had returned home.

– Once they had got what they wanted they did not appear to be
concerned about others.

– They were generally resistant towards professional staff, and
unwilling to consider their views and offers of help.

– Their last-minute decision to reject the use of ILF funds was
perverse.

– They did not appear to understand or take proper
responsibility for their duties as employers.

– They appeared to place a higher priority on the flexibility
and willingness of personal assistants to fit in with their very
particular demands, than on their skills, knowledge and
commitment.

– Mrs Boyle spends all of her time in bed, and her quality of
life is very poor.

Independent comment

The idea of direct payments is to give disabled people the
wherewithal to set up their own tailor-made system to meet personal
assistance needs, writes Sian Vasey. This can involve trials and
tribulations, but also gives a level of personal freedom that is
unlikely to be achieved by the supply of agency people or by direct
services. This really does mean freedom to sort the situation out
in any way the client chooses, however eccentric, as long as it is
legal.

Social services departments have got to develop the trust in
clients to let them get on with it and this includes trusting that
people will ask for help if they are in need. In return for this
trust they need clarity about where their responsibilities start
and end. A mechanism should be developed, perhaps just a simple
contract, to facilitate the disabled person in formally accepting
legal responsibility for their own needs and for the employment of
others and for allowing departments to pass responsibility on to
the disabled person. There would need to be a checklist of
procedures necessary to make the contract valid.

This case has put the system to the test, but it shows that
allowing people autonomy is the right thing to do. When a direct
payment is in place the buck must stop with the disabled person on
the issue of employing people and on the issue of making sure their
own needs are met.

This case also prompts the question as to whether a local
personal assistance support scheme was available to the couple. A
PASS, as it is known, should be run by disabled people and can be
an invaluable form of informal peer support to people on direct
payments. It can also provide ongoing assistance with the nuts and
bolts of a running a direct payment scheme for those who need it.
The social worker’s mind may have been more at ease with the
situation if such a scheme were on hand, and National Centre for
Independent Living supports those local authorities which assist in
the development of this type of scheme.

Sian Vasey is information officer, National Centre for
Independent Living.