At the time of writing, Sarah Coates was working as an
assistant psychologist in a community learning disability team. She
went on to work as an assistant in a community team for children
with life-limiting illnesses, and currently supports people
suffering from panic attacks and anxiety.
Over the past 30 years many large, long-stay hospitals for
people with learning difficulties have closed down. These hospitals
often evoke images of cold, sterile institutions where service
users had little control over their daily lives and where basic
human rights were brought into question. More recently an emphasis
on ordinary living has led to the development of alternative models
and a big drop in the specialist hospital population.
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One such model is "supported living", a concept that originated in
the US. It is based on five criteria: the separation of housing and
support, a focus on one person at a time, the provision of full
user choice and control, a non-rejection policy, and a focus on
relationships. The first supported living programme was set up in
the UK in 1993.
There has been a lot of research into new models of care but little
specifically on supported living (principally Felce
1 and
Simons
2). The studies overlooked
important elements - in particular, the quality of life in such
environments - and did not look at people's experiences over a
period of time.
We decided to investigate whether supported living achieved the
benefits claimed for it (wider social networks, better
relationships, more opportunity to make choices and exert control,
gaining or developing skills) for a small sample group over a
period of 16 months.
Our study consisted of five people, all of whom had learning
difficulties and high support needs, and were aged between 28 and
69. Three had moved into supported living directly from long-stay
hospitals, one had spent 12 months in an assessment and treatment
unit prior to moving, and the final participant moved directly from
the parental home. We collected information on social networks and
choices and decisions before and after moving, using tables and
semi-structured interviews, and assessing independence and social
skills with the adaptive behavioural scale, a standardised
measure.
Contact with the community
Disappointingly, following their move into the community, the
participants in our study found that contact with people other than
their families or support workers remained non-existent or
superficial. Despite a greater community presence than would be
possible in hospital, communication with local people in shops,
pubs and caf's, for example, was often limited to the exchange of
greetings.
Surprisingly, contact with family remained the same after the move,
despite previous research suggesting that supported living
encourages contact with family members. All five participants had
most contact with paid staff. Contact with other service users - at
day centres, for instance - increased but no close friendships
developed. Staff, not service users, initiated and organised visits
to other service users' homes and activities.
However, in many areas of daily life the participants exercised
more choice. Generally, these were about what and when to eat, when
to take a bath or shower, what clothes to buy and wear, what
entertainment they wanted, and how to furnish and decorate their
homes.
These improvements came about through a high staff/client ratio and
creative methods to help people make informed decisions. Our study
confirmed previous findings that service users were still not
exerting control over major life decisions, such as where and with
whom to live, and the hiring and firing of staff.
Each person's experience of resettlement was unique, and skills
waned and waxed depending on individual circumstances. However, the
skills of the five service users improved overall, particularly in
domestic activity, physical development, economic activity,
language development, and social and interpersonal behaviour.
Objectives unmet
It is evident that supported living sometimes struggles to meet its
five objectives. It is worth noting that after one of our
participants moved from hospital into supported living, his
challenging behaviour and incontinence became more difficult to
manage. A subsequent move into a second supported living situation
has seen a dramatic reduction in these behaviours. Clearly, one
service was unable to meet this individual's needs, which brings
into question the aims of zero rejection and a focus on one person
at a time.
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It is also debatable whether the aims of providing full user choice
and control and focusing on relationships can be met. Our
participants had little control over major life decisions, and only
developed close friendships with staff.
Our investigation sets out challenges for the future development of
supported living. It should not be assumed that people with
learning difficulties who have been institutionalised for most of
their lives have the skills to develop friendships. Service users
need practical support from staff in getting out into their
communities, and a structured programme to develop social
skills.
The same goes for choices and decisions. Staff need to be clear
that choosing requires an understanding of the choices available
and their consequences. Staff also need to be proactive in helping
users develop and maintain skills and meaningful family contact.
Training may be needed.
Finally, commissioners and staff should regularly assess services
to ensure the original aims of supported living are met. Otherwise
they may relapse into the traditional service model that supported
living seeks to escape.
Abstract
This small-scale longitudinal study looked at whether supported
living is associated with improvements in three aspects of quality
of life: social networks, opportunities to make choices and exert
control in daily life, and development of skills. The results
showed changes in social networks were limited, people were more
involved in smaller everyday choices, and skills improved. The
results raise questions about the meaning of supported living which
both commissioners and staff need to consider.
References
1 D Felce, Quality of
Life for People with Learning Disabilities in Supported Housing in
the Community: A review of research, Centre for Evidence-Based
Social Services, University of Exeter, 2000
2 KSimons, A Foot in the
Door: The early years of supported living for people with learning
difficulties in the UK, National Development Team,
1998
Useful websites
Contact the authors
A full version of the report is available from the authors.
E-mail sara.barna@banes-pct.nhs.uk,
or phone 01225 831566.
