A life more ordinary

    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.

    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 Felce1 and
    Simons2). 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.

    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.

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