Case of the missing voice

This week’s multi-disciplinary panel offer views on a case
involving disagreement over the future of a woman with learning difficulties.

Case study

The names of all service users mentioned in
this article have been changed.

Situation: Louise Sands is a 20-year-old white
female with learning difficulties. She has spent the past three years away at a
boarding college. During term breaks she comes home to her mother and
stepfather. Her father left home two weeks after she was born and has no
contact with her. The social services department are planning for Sands’s
future.

Problem: Sands’s social worker (and her
managers) believe that she is competent enough to return to her home city and
live with a degree of independence – possibly in supported lodgings. However,
Sands’s highly vocal parents do not agree. They doubt her ability to cope, and
point to two recent incidents (Sands absconded from her college, and used a
whole bottle of shampoo during one unsupervised shower) to confirm their fears.
They would prefer her to be in a registered care home with 24-hour support.
They also believe she would most benefit from a therapeutic, working rural
setting, preferably based on Rudolf Steiner principles. Both parents are
committed Christians. The social services department believes that Sands would
prefer to return home and strongly suspects her parents have been
"coaching" Sands to express their preference, not hers. It believes
that a care home placement would be detrimental to Sands’s independence and
development. The parents believe the department is biased against such Christian
and (what they say the social workers disparagingly refer to as)
"hippy" placements.

Panel responses

Louise Lewis
In order to explore some of the issues in this case scenario I will focus on
Louise Sands in relation to clinical practice. The first thing that struck me
was Sands’s lack of voice; the tensions are primarily between her family and
social services. There is no denying the vital contribution that families make
and there is a need for carers to feel confident that public services will
provide reliable support.¹ However, this needs to be balanced
against a person-centred approach that should place Sands at the centre of
decisions made about her life.

In order for Sands to make informed choices she
may benefit from a multi-disciplinary assessment to identify her strengths and
weaknesses. From this, practice could focus on how to work jointly with her to
enable her to make decisions. This could involve networking and mapping
relationships, choosing a lifestyle, city versus rural living, life story work
using photos and other media, and visits.

The recent incidents regarding Sands’s apparent
inability to cope can be viewed positively. There could be a simple explanation
for the shampoo; it could have dropped in the shower. Equally, Louise leaving
the college could be a demonstration of her abilities to make independent
decisions and manage autonomously within her local community.

Practitioners need to remember that risk-free
living does not exist. Frequently, interventions focus on how we can best
ensure that people are safe. In doing so we may neglect to consider what
individuals require to be happy.² Managing this paradox may require
a fundamental shift in professional thinking. It is essential to consider
ethical issues arising from judgements about perceived quality of life. This
issue is at the heart of this case study with both parents and services having
made value judgements about what they believe is best for Sands. Practitioners
need to have opportunities to reflect on their personal perspectives and how
these impact on practice. Effective clinical supervision can enable individuals
to develop their roles to become more supportive and empowering.

¹ Department of Health, Valuing
People, HMSO, 2001

² M Smull, Revisiting Choice,
Unpublished paper, 1995

Mike MacCallam
What concerns me about this scenario is that nobody seems to have asked Sands
what she wants to do and where she wants to live. And who with? There seem to
be a lot of assumptions being made based on what people believe or suspect, and
little evidence to support the views of either the social workers or the
parents.

It is apparent that there is little attempt to
work together with the family,  and it
seems as if Sands may be the unwilling victim in a power struggle between the
social workers and the parents over what they think is best. Ultimately,
however, neither preference will be in Sands’s best interests if she has had no
choice, no voice, and no opportunity to take some control of her life.

The views of the parents and the social worker
are not as important as finding out what Sands wants to do for herself. Is she
allowed to have hopes and dreams of her own for her own future?   

It is alarming to read how the social services
department is planning for Sands’s future. Why isn’t Sands planning for her own
future? How many of us would like our lives, or those of our children, to be
planned by a local government department?

The social services department and the parents
should be encouraged to put aside their differences and acknowledge their
respective responsibilities to Sands. The basis of any decision making about
her future must be rooted in a process that allows her the freedom and
opportunity to express her own views and to be supported in her choices. This
may mean the social services department and the parents need to let go of the
control that they exert over Sands and undertake an honest review of their
relationship with her and each other. It may also mean adopting more creative
solutions to supporting individuals and a change in practice by the social
services department. Why does Sands need a social worker?

Finally, one Department of Health report offers
lots of practical advice about supporting family members, and may be a useful
reference for the social work department for building bridges with the parents
in this case.¹

¹ C Ward, Family Matters –
Counting Families In, Department of Health, 2001, at www.doh.gov.uk/learningdisabilities/familymatters.pdf
 

User view

We were very upset to read about what is
happening to Louise Sands. As people with learning difficulties, we know what
it is like to be in her situation where everyone has an opinion about what is
best for your life, but your opinion is ignored. We have confidence in her and
believe that she has the right to do what she wants. This includes taking risks
like everybody else. Because we have learning difficulties we often have to
prove ourselves even more than people without learning difficulties. We are not
allowed to make any mistakes or learn from them. Louise made a harmless mistake
washing her hair. Maybe, she ran away from college after this because she was
scared she would get into trouble for failing. This makes us really sad.

We question whether Louise’s parents are caring
or controlling? There is a fine line between the two. Part of all parents’ job
is to worry about their kids. But the other part of their job is to let us take
risks like everybody else. They are making too much fuss over the shampoo
story, which is probably already very embarrassing to Louise. In one way they
expect too much of her, but in another they don’t have enough trust and expect
too little from her.

We think that social services are, for once,
thinking about what is best for Louise. She has the right to live where she
wants to and have the support to do this. Why haven’t they talked to her
parents about other ways that a person who needs 24-hour support can live? What
about direct payments or 24-hour support in your own flat? Maybe Louise could
start with 24-hour support and reduce the hours as she gets used to living on
her own?

If they really think that Louise is being
coached by her parents, social services should ask her if she wants an
independent advocate or support from a self-advocacy group. Unfortunately,
social services have shot themselves in the foot in terms of the parents being
open to their ideas and making it easier for Louise. By making comments about
the family’s religious beliefs, they have added to the tension. If Louise
really wants to live in a religious community or with other people with
learning difficulties, she has the right to do this. The question is we don’t
know what Louise wants in life until she has someone independent to talk to her
about it! That’s where it should be starting.

Pasquelina Cerrone, Colin Gear and Kathleen
Franklin all work for learning difficulties group Milton Keynes People First.