A commissioner’s guide to developing and sustaining local user-led organisations

Why develop and strengthen ULOs: Policy drivers

Watch John Evans, disability consultant and member of the DH ULOs project team, explain what the DH expects of local commissioners

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A number of documents form the policy framework for the role of user-led organisations within policy.

The key document that launched the renewed interest in user-led organisations under the previous government was the ‘Improving life chances of disabled people’ report by the Prime Minister’s Strategy Unit (2005). Recommendation 4.3 said that there should be a ULO in every local authority area with social care responsibility, modelled on existing centres for independent living (CILs).

'Putting people first' (the 2007 joint statement by a range of key social care stakeholders) highlighted the need to work with ULOs in the transformation of adult social care. Guidance on the roll out of 'Putting people first' stated that local authorities should develop:

…an enabling framework to ensure people can exercise choice and control with accessible advocacy, peer support and brokerage systems with strong links to user led organisations. Where user led organisations do not exist, a strategy to foster, stimulate and develop these locally should be developed.

Local authority circular (DH) (2009) 1

Strong ULOs were therefore part of the Transforming Adult Social Care (TASC) milestones. The Association of Directors of Adult Social Services, the Local Government Association and the Department of Health jointly agreed five milestones against which local authorities were to be judged on their progress on the transformation of adult social care. Milestone one included having effective partnerships with people who use services, carers and other local citizens. This was measured by every council area has at least one user-led organisation directly contributing to the transformation of personal budgets.

This milestone was underpinned by a significant number of documents to support local authorities to achieve this milestone, including:

Other organisations also contributed to this work, including:

Since 2010, the role of user-led organisations specifically in supporting social care and health policy has been maintained. This role has been captured in 'Caring for our future', the social care White Paper, which states:

Networks of support can often come from organisations led by people who use services and carers, which act as the voice of disabled people and carers, as well as delivering care and support. Last year we announced an investment of £3 million over four years that will aim to promote the growth of disabled people’s user-led organisations…

New models of advice and support such as peer networks and user-led organisations could also help to bring different people together to purchase care and support collectively and make better use of their funding. Evidence shows that access to independent advice and support means that people are much more likely to take their care and support funding through a direct payment. This is, therefore, a core part of our ambition to maximise the control that people have over their care and support.

This support has been captured in the work of the Think Local, Act Personal partnership – for example, in the Making it Real programme to support service providers to make progress towards personalisation

User-led organisations beyond social care

It is useful to note that ULOs – as civil society organisations run by and for their members and clients – contribute to other areas of public service reform. Through enabling peer-to-peer support for disabled and older people in their local communities, and through encouraging their members and clients to use their social capital, ULOs are extremely well-placed to facilitate citizen contributions.

This role has been reflected in a variety of other policy settings, as outlined below: