Too much to expect?

Kingston-upon-Thames
physical disabilities team.

This
week’s panel delves into a case where a man with a visual impair ment demands
more services than can be provided.

Case
study

Situation:
Stanley Cooper (not his real name) is a 64-year-old man with a visual
impairment. He lives alone in a first-floor flat in a council low-rise estate.
He receives home care assistance with cleaning, cooking and shopping.

Problem:
Cooper regularly complains to the social services department about the quality
and range of services provided. He writes weekly, lengthy letters (which he
"instructs" his home carer to copy down for him) and sends in tapes.
He refuses to register himself as blind – and will only accept services
organised by the local authority. He demands that the department should meet
his intellectual needs as well as his physical ones. He wants children from a
local grammar school to help him with his Latin. He doesn’t mind the female
care staff cooking and cleaning for him, but he wants senior male staff to help
with other tasks – such as accompanying him while he has his hair cut (the head
of service did so once during a visit). Having fallen out with the department’s
only male disability social worker, he refused to accept a new worker on the
grounds that she was female and from an Oriental background – neither of which,
he asserts, can relate to him, a white male. He also wants a social worker to
type up course work on a degree on psychology that he wishes to take (and which
he wants the department to pay for).

The
panel wishes to acknowledge their colleagues in the sensory impairment team for
their help with putting this article together.

Panel
responses

Sheila
Hart
This case demonstrates the discrepancy between the public’s perception of
the local authority’s responsibilities and reality.

In
the local authority’s view, Stanley Cooper’s demands would not be reasonable.
His dependence on home care does not promote an independent lifestyle. The home
care service concentrates on essential personal and practical tasks. This does
not match his view of the service. Some of his requests cannot be viewed as
essential tasks. Cooper’s expectations of the service and the staff are not
realistic, which is presumably why he then feels the need to complain.

It
needs to be made clear to Cooper that although he has fallen out with the
department’s only male disability social worker, he should not be allowed to
discriminate on grounds of race or gender. He is obviously angry with the
department and does not feel that it meets his needs. Perhaps this is why he
targets particular workers and refuses to work with them.

Maybe
a visual impairment rehabilitation worker working with him on independent
living skills might enable him to be less reliant on home care and thus improve
his lifestyle.

It
sounds like Cooper may have an "investment" in his dependence and
constant complaining, so any work towards independence needs to be done
sensitively, at Cooper’s pace, and a good rapport and relationship would need
to be established between Cooper and the worker.

Perhaps
an advocate could help him look at the issues he has with local services and
help him to sift out the ones that are really important to him. Clearly there
are times when it is appropriate and helpful to complain and sort out
shortfalls in a service, but constant complaints from an individual tend to
lose their impact and can lose their value through their frequency. There is a
chance that a really important issue can be missed when constant complaints are
received.

A
consistent approach from all the professional staff involved with Cooper will
be vital to help him focus on the services that the local authority can offer,
with realistic expectations, and help him identify where he can look for help
in other areas of his life.

Cath
Turner
The issue regarding his refusal to be registered as blind is
understandable, but has he been informed of the advantages of registration?
There are certain financial benefits to being registered – for example, extra
tax allowance if he is a taxpayer or disability premium if he is on income
support or claiming for disability living allowance. He could also apply to
certain charities for education funding and could sometimes gain access to
public places or courses free or half price. He would automatically be entitled
to a blue badge, which would help with accessing his local area.

Has
a referral to a rehabilitation worker for visual impairment been considered? He
could be advised on mobility training, as there is no reason why, after
training, he couldn’t make his own way to the hairdressers or even the shops.
The rehabilitation worker may direct him towards other relevant social or
self-help groups.

Disability
living allowance could be used to pay for extra support. Although he says he
only wants services arranged through the local authority, might it be
appropriate to discuss the flexibility of direct payments? However, it may be
difficult for him to recruit and retain staff as he seems to find it difficult
to form and maintain relationships with people who come into his home. There
may be issues of "abuse" to staff, so this line of action may be
inappropriate unless the independent living scheme organiser could work with
him to help him develop the skills necessary to be a good employer.

Does
Stanley Cooper know he can borrow or have read onto tape just about any book he
needs? This could be arranged through the Royal National Institute for the
Blind (RNIB) or a relevant voluntary organisation. A request to a school for a
young volunteer to assist him with his Latin is no more appropriate than to
expect his social worker to do his typing and to arrange funding for his
psychology degree! Does Cooper know about the advice and support that could be
offered by the RNIB student support services or indeed the university itself?
Disabled student allowances are also available to pay for extra expenses – for
example, equipment such as CCTV, which enlarges and displays documents onto a screen,
an adapted computer, the cost of a personal helper, travel or other costs.

User view

On
the surface, Stanley Cooper seems to be a demanding client, to the point of
being aggressive. He appears to want his social services department to provide
and facilitate a range of services that most of us could not reasonably expect
to receive from even the most well-resourced of local authorities. Why does he
refuse to register himself as blind? Why does he refuse a new social worker?
Why does he insist on all his services being provided from one agency? I would
suggest that, behind this angry, embattled facade, Cooper is a very frightened
man.

When
one’s condition deteriorates, some people try to cling on to their previous
"status". If he registers as blind, Cooper has to accept that his
sight has deteriorated, or that he is a blind person, with all the connotations
this may hold for him. He may fear a further deterioration, and one way of
denying this would be to refuse to accept that his condition has really
changed. At one point, my own condition had deteriorated. My way of dealing
with this was to refuse to accept that any change had happened, and to refuse
any change in my physical care, to the point where the very safety of both
myself and my carers was put at risk.

Cooper
may have experienced a time when his care has fallen short of his expectations.
Perhaps, he might think, if he insists that social services should take up full
responsibility for all of his care, the package is more likely to be dependable.
The more people in social services that he can persuade to be involved in his
care, the more he can convince himself that he is being "really cared
for". This may be a significant factor behind his rejection of a female
social worker from an oriental background, who, he may reason, could never
understand (that is, care for or empathise with) him as a white man.

It
seems to me that Cooper has very strong feelings of insecurity. Perhaps a
gentle, tentative exploration of his feelings about his own physical condition
and his perception of his condition is the place to start – why else would
someone deliberately deprive themselves of the facilities that are readily
available for people who are registered as visually impaired? The opportunities
and equipment offered by the RNIB and similar organisations for people with
visual impairments would meet many of his demands, apart from any opportunities
offered by his local education authority under the Lifelong Learning
programmes.

Simon
Heng is chairperson of Worcestershire Association of Service Users and is a
wheelchair user.

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