Too much talk?

    As the first white paper on services for people with learning
    difficulties in England for 30 years, Valuing People
    outlined a far-reaching agenda for change.1 It aimed to promote
    individual rights, enable choice and independence and encourage
    social inclusion. It was plain from the start that effective
    implementation would need a significant shift in the way services
    were planned and provided. Moreover, Valuing People made
    clear that this was to be achieved with the full and active
    involvement of all stakeholders, including people with learning
    difficulties and family carers.

    Learning disability partnership boards were set up to implement the
    changes. These new multi-agency bodies involved specialist and
    non-specialist services from the statutory, voluntary and
    independent sectors, as well as people with learning difficulties
    and carers. Their remit was to promote awareness of Valuing
    People
    and to oversee the development of local strategies on a
    variety of issues, including employment, housing and person-centred
    planning.

    But to what extent have local authorities developed effective
    strategic plans? How have boards involved people with learning
    difficulties and carers? And what has been the role of
    commissioners of learning difficulty services in implementing the
    white paper? The Strategies for Change research project at the
    Norah Fry research centre, University of Bristol – funded as part
    of the Department of Health’s learning disability research
    initiative – set out to answer these questions (see About the
    Research, facing page).

    Effective strategic planning within social care must be based on
    accurate information about relevant populations, existing services,
    unmet need and costs. But an analysis of local authority learning
    disability joint investment plans (JIPs), which were produced in
    spring 2001 as Valuing People was launched, showed many
    authorities lacked such crucial information (see panel, page 36).
    There was evidence, however, that by highlighting this deficit JIPs
    had helped improve the way information was collated and used. One
    authority, for example, had consequently employed a dedicated
    information officer for learning difficulties.

    Although they play an important role in delivering the Valuing
    People
    agenda, learning disability partnership boards do not
    hold any executive powers. This was sometimes a cause of
    frustration, particularly for carers.

    However, service users were enthusiastic about how their views were
    listened to with respect at meetings. Many boards have been
    successful in providing a forum for debate and raising the profile
    of learning difficulties within local political and public sector
    management agendas. One indicator of how boards raised the profile
    of learning difficulties was the status of those who chaired
    meetings.

    In this study one-third of boards were chaired by elected
    councillors and one-third by assistant directors of social
    services; in two areas, chairs were directors of social services
    and, in one, was the local authority chief executive.

    Involvement of such powerful individuals transmits the message that
    learning difficulties matter. In a minority (but increasing number)
    of areas, boards were co-chaired by someone with a learning
    difficulty, a move which again gives a clear signal that service
    users can and should be actively involved in all relevant
    decision-making processes.

    Although all boards fulfilled the minimum requirement of including
    at least two people with learning difficulties and at least two
    carers among their membership, these groups remained significantly
    outnumbered by professionals.

    Moreover, the practical arrangements and paperwork associated with
    meetings were often arranged with insufficient attention to the
    difficulties of inclusion (see panel, below). In many cases,
    sub-groups, working parties or locality groups operated on a more
    inclusive footing than the boards themselves.

    The most frequent criticism of boards was that lengthy meetings had
    yet to result in any obvious changes to front-line services: As one
    carer said: “I am becoming a bit disillusioned with the fact that
    there has been a lot of talk and no action and that has always been
    the case with things that I have been involved with.”

    To increase their effectiveness, it seems that boards need to
    define their role more clearly and, given the absence of executive
    powers, learn to maximise their influence through scrutiny of local
    strategic plans and lobbying of generic public services.

    Despite the frustrations of some board members, commissioners in
    most areas expressed confidence that the plethora of strategies and
    frameworks were beginning to show results. In particular, there was
    evidence that joint planning with independent sector providers was
    creating new services that offered real choice to people with
    learning difficulties and opportunities for genuine social
    integration.

    Despite this, commissioners still need to be proactive in managing
    their local market in social care services, so that future
    developments are based on the expressed needs and wishes of service
    users rather than being dependent on the vagaries of provider
    organisations.

    In relation to other areas of service development several
    observations need to be made:

    • Person-centred planning was interpreted in various ways.
      Managers and commissioners need to clarify the distinction between
      community care needs assessments and person-centred planning. Some
      people thought there was a risk that person-centred planning might
      become watered down, or service led, as it is more widely
      adopted.
    • Lack of capacity in housing remained a key issue in many parts
      of the country. There were, however, some indications that
      commissioners and boards were engaging with local authority housing
      departments and registered social landlords to increase the housing
      options available.
    • Modernising day services presented various challenges. Family
      carers were often wary of changes that might result in an overall
      reduction in hours of support available, but in some areas it had
      proved possible to change the types of activities or support
      offered without reducing overall hours.
    • Commissioners were aware of the need to develop more employment
      opportunities for people with learning difficulties, not least to
      increase social integration. Some local authorities had recognised
      the impact they could have by becoming employers of people with
      learning difficulties. Local services were clear that they were not
      in a position to address some of the broader barriers to employment
      for people with learning difficulties, such as the benefits
      trap.

      Finally, the project presented some of these findings to a group of
      people with learning difficulties and listened to their reactions.
      It was clear that many people with learning difficulties had had
      negative experiences of change being foisted upon them, without
      having had any say or control over the process. (This has also been
      true of carers and, sometimes, front-line staff.)

      This workshop served as a timely reminder that the pressure to
      improve services must not overtake the need to listen to people
      with learning difficulties and to ensure that they have as much
      input as possible into changes which affect their lives.

    Partnership Boards.

    • Service users reported that buildings were not always
      wheelchair accessible and that poor acoustics in meeting rooms made
      it difficult for them to follow proceedings.
    • Although some local authorities paid both service users and
      carers to attend board meetings, such examples were few; often it
      was a struggle to have travel and other expenses reimbursed
      promptly.
    • More explicit acknowledgement needs to be made of groups which
      are consistently excluded – for example, carers who are also in
      paid employment.
    • Both carers and service users reported problems with the
      availability of relevant documents in accessible formats and in
      obtaining copies of agendas in time to allow for consultation with
      others before meetings.

    Abstract.    

    This article examines the changes that have been happening in
    services for people with learning difficulties in England since the
    2001 Valuing People white paper. It highlights the ongoing need for
    better planning and information systems and looks at the
    involvement of service users and carers in planning service
    changes.

    About the research.

    • An analysis of local authority learning disability joint
      investment plans produced in spring 2001.
    • Interviews with commissioners of learning disability services
      and chairs of learning disability partnership boards in 20
      locations in England.
    • A user-led review of self-advocate involvement in boards.
    • Interviews with 18 carers who were members of boards.
    • A workshop exploring experiences of change in the lives of a
      group of people with learning difficulties.

     

    Joint investment plans.

    • Only 73 per cent of authorities could provide a figure for the
      number of people using learning difficulty services at the time of
      the joint investment plan.
    • Detailed information about particular groups was patchy: for
      example, only 43 per cent of authorities gave figures for people
      with profound and multiple impairments; 28 per cent gave the number
      of people living with elderly carers.
    • Many authorities could not provide accurate information about
      the number of people accessing different types of services: for
      example, 45 per cent could not say how many used day services; 72
      per cent could not say how many used short-break services.
    • Few action plans were realistic or achievable; most either
      lacked fully costed proposals or failed to identify any source of
      funding.

    Further information.

    • This research was undertaken with financial support from the
      Department of Health; the views expressed here are those of the
      authors and not necessarily those of the Department of Health.
    • The full final report from this project, Making Valuing People
      Work: Strategies for Change in Services for People with Learning
      Disabilities, by Rachel Fyson and Linda Ward is published by the
      Policy Press and available from Marston Book Services, price
      £16.99 (plus postage and packaging). Tel: 01235 465500
    • The project website, including various further articles that
      are free to download, can be found at: www.bris.ac.uk/Depts/
      NorahFry/
    • Further information about Valuing People can be found
      on the website of the Valuing People Support Team: www.valuingpeople.gov.uk

    Contact details.    

    Norah Fry Research Centre, University of Bristol, 3 Priory Road,
    Bristol BS8 1TX; telephone 0117 923 8137; e-mail: rachel.fyson@bristol.ac.uk

    References. 

    1 Department of Health, Valuing People: A New Strategy
    for Learning Disability for the 21st Century (Cm 5086), The
    Stationery Office, 2001

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