Research into practice

Jill Manthorpe reports on research that
highlights good practice in supporting people with high support
needs to make decisions.

This research focuses on the views and
experiences of 10 people with learning difficulties about what
helps them make decisions. It is supported by workshops attended by
a further 200 service users and interviews with support staff. The
focus is particularly directed on people with high support
needs.

The research describes the many factors that
help people with learning difficulties make their own decisions.
These include having a diverse social network, having choices
valued and recognising when choices are presented. Significantly,
the report comes with a workbook using plain English and a cassette
tape for people with learning difficulties.¹

Other people key to developing supported
decision-making include family, friends, staff and advocates. Their
commitment and skills in communication are important. But the
research warns that anyone can call themselves an advocate and that
services vary considerably in the amount of notice they take of
people talking on behalf of a person with learning
difficulties.

Research with people who have high support
needs, or who are sometimes referred to as being profoundly or
multiply handicapped, can have difficulties in acquiring meaningful
consent by those participating in the research. This project
outlines some of the methods used to ensure an ethical approach was
developed and these would be useful to anyone thinking of similar
work or whether to assist local researchers. One approach used in
this research was to spend time with people with high support needs
to explore day-to-day decision-making and examples are provided to
illustrate themes such as increasing opportunities to make
choices.

One finding to emerge from these observations
was that while having a network or circle of people to support an
individual was important, such circles are not formed without
commitment, generally from a particular individual. The researchers
found two examples where parents had built up such circles,
involving professionals, other family members and friends.

The research concludes by repeating the claim
of many user, voluntary, advocacy and professional groups that the
law must change on decision-making and that the emphasis should be
on supported rather than substituted decision-making. It confirms a
general unease with current systems but acknowledges that in any
new arrangement there are likely to be dilemmas and risk.

New commitments to advocacy in the recent
white paper Valuing People will not solve problems
instantly, partly because of a shortage of advocates but also
because many advocacy schemes have limited opportunity to build up
trusting relationships or to learn about a person’s wishes and
communication needs. It also offers some international examples to
stimulate thinking about people’s rights to support as much as
their problems with capacity or need for protection.

Practitioners working with people with high
support needs may wish to test this research by making use of the
workbook and tape with individuals. Developed with individuals and
accessible in style and content, both set high standards in making
research relevant.

– S Beamer & M Brookes, Making
Decisions: Best Practice and New Ideas for Supporting People with
High Support Needs to Make Decisions, Values into Action,
2002. ISBN 0 903945 60 6, £12 plus £1.50 postage &
packing.

Jill Manthorpe is reader in community
care at the University of Hull.

References

¹ The workbook It’s
Your Choice, and the tape (priced £5 plus £1.50
p&p) are available from Values into Action, Oxford House,
Derbyshire Street, London E2 6HG, Tel: 020 7729 5436.