Learning disability partnership boards: are service users really insiders?

It is now almost six years since the establishment of learning disability partnership boards. Research has found that the partnership between public sector managers and lay members is not on equal terms as defined in the white paper Valuing People. Where primary care trusts cascade learning disability development funding to partnership boards it is possible to provide opportunities for people with learning disabilities to allocate money to enable “bottom up” initiatives to be supported.

In his speech to members of learning disability partnership boards (LDPBs) last year, care services minister Ivan Lewis said: “As partnership boards, your role is to oversee the planning between all the agencies in your area so that they [that is people commissioning and planning services] respond to the challenge of providing real choice that is responsive to individuals.”

His audience included family carer representatives and people with learning difficulties sitting on LDPBs. Yet, how far are these lay members on the boards actually being involved in overseeing changes to services and influencing commissioning and planning services in their area?

Six years ago, in March 2001, the Valuing People white paper proposed a “new vision” for family carers and people with a learning difficulty.(1) One of the ways of implementing this new vision was to include at least two family carers and/or people with a learning difficulty on newly formed LDPBs. These lay representatives were given equal executive member status along with representatives from the public sector and service providers operating in their area.

Responsive services

Two aspects of the work of partnership boards are important in enabling local services to be more responsive to the needs of people with learning difficulties and family carers in their areas. These two aspects are:

● The relationship between lay representatives (that is people with a learning difficulty and family carers) and the representatives of statutory agencies who together form the core of the local LDPB.

● The extent that lay representation is involved in the priority setting for the allocation of learning disability development fund money.

Partnerships between members of the public and statutory agencies can be quite varied. Arnstein described eight types of partnership relationships as “rungs on a ladder of citizen participation”.(2) Putting Arnstein’s model into the context of social care, each type of partnership differs according to the level of control held by public sector managers over representatives of the public.

When the boards were established in 2001 each local authority was expected to include at least two members who had learning difficulties and/or family carers. Lay representatives are expected to have the same executive powers as other members of the board.

On this basis it can be expected that all the representatives would be given equal status such that they work together to develop strategies and policies for services in their areas and make decisions about strategies. Research on partnership boards has shown that this concept is more of a hope than a reality.

Interviews with adults with a learning difficulty and family carer representatives suggest that the boards are not operating as equal and open partnerships as many lay representatives anticipated.

A family carer described how it is not only their own local partnership board that appears to exclude the views of lay representatives in decisions about the plans for local services: “A view that’s put across from a lot of partnership boards by carer representatives [is] that they’re talked at and they’re not listened to but that’s not the spirit of it [partnership boards]. The spirit of it is that we have an input as a board [member] rather than a majority view which is actually…council officers.”

Observational analysis of partnership board meetings suggests that few, if any, decisions are taken in meetings and much of the time spent at these is taken up with the dissemination of information and policies that are being formulated either by central government or by local public service managers.

Although the “new vision” set out in Valuing People is providing opportunities for people with a learning difficulty to become involved in local governance, there is still a long way to go in achieving “people power”. One family carer representative expressed a need for the lay representatives to be more proactively engaged by the boards:

“I would like to be more involved in decision making. But I’m not sure if the board is set up to enable it to make decisions it’s very rare that we get a long menu of options [to make a decision on the development of services] and it’s very rare that people come to us first and say ‘we need to be thinking about this and could you put users and carers at the heart of it’ we’re nearly always informed after the event. So the options are not really options.”

Funding priorities

The Department of Health allocated learning disability development fund (LDDF) money for use on priorities set by boards. The revenue funds are currently distributed via primary care trusts. In the Valuing People review it was reported that:

“Our best information suggests that about a third of the capital and up to a fifth of the revenue is used by the NHS for non-learning disability purposes. Whilst the NHS rules allow this to happen, it is a major disappointment.”(3)

The LDDF money is clearly an opportunity for boards to have a major impact on ensuring the principles of Valuing People are implemented. It would be expected that setting local priorities would be a major topic of boards. However, commissioning managers face the dilemma of being unable to implement local priorities when their PCTs withhold funding or provide these managers with limited opportunity to entrust at least some of the funds to the boards.

When funding has been withheld or withdrawn by PCTs, resentment and distrust in public bodies is quickly formed within the boards. Commissioning managers also have to have trust in board members being able to take responsibility to identify local priorities. One family carer representative reported that they had little knowledge of how the LDDF money was being assigned to services in their area:

“We did once have a paper come to the board perhaps two or three years ago saying these are what we [local authority] think are the priorities for spending [LDDF money] on…and these were national priorities and really there were these things we were told that had to be done. So really, there weren’t any options around that that was just rubber stamping.”

Working group

One board was able to assign some of the LDDF money to priorities agreed by a nominated working group which included people with learning difficulties. Bids were received from groups throughout the region. Some of the LDDF money was also distributed to local district partnership groups.

Each district group had to set up a bank account in which the funds were lodged. Each district group now has the responsibility of managing and funding smaller local initiatives. Such action has the advantage of enabling new ideas to be tested locally and encouraging ‘bottom up’ initiatives.

There is little evidence that the learning disability partnership boards are functioning at a level where there is a trusted relationship between public agencies and public representatives. Unless the boards are given more power to make decisions and are responsible for financial resources to influence commissioning in their localities then they are likely to become an unfulfilled promise of the 2001 white paper.

Carol Riddington has been working in social research for over 25 years. Currently she is conducting research on learning disability partnership boards and is in the process of writing up the findings for a PhD at the Tizard Centre, University of Kent.

Training and learning
The author has provided questions about this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected training log held on the site. This is a service from Community Care for all GSCC-registered professionals.

References
(1) Department of Health, Valuing People, Department of Health, 2001
(2) S Arnstein, “A ladder of citizen participation“, American Institute of Planners Journal, 35(4): 216-224, 1969
(3) Valuing People Support Team, The story so far…, 2005

This article appeared in the 1 March issue of the magazine under the heading “The illusion of power”