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