Over the last few months, I’ve been lucky enough to contribute to a few publications about Disabled People’s User-Led Organisations. This post is therefore an extract drawn together from a few of these publications – including ripfa’s Key Issues on ULOs – about the history of DPULOs and the policy context, up until the general election in May 2010. The Strengthening DPULOs Programme continues the story from then, building upon the platform below.
Disabled People’s User-Led Organisations (DPULO) are part of a long history of Disabled People’s Organisations and Centres for Independent Living (CIL).CILs themselves began with war veterans returning to the United States in the 1960s and wanting to live independently rather than in institutions. In the UK, similar attempts by disabled people in the 1980s to live independently in the community rather than in residential care led to the creation of the first CIL.
In 2005, a key report – Improving the Life Chances of Disabled People – highlighted the difference to disabled people’s lives that CILs made in the places where they existed. As a result, it made Recommendation 4.3:
By 2010, each locality (i.e. each area with social care responsibilities) should have a user-led organisation modelled on existing Centres for Independent Living (CILs).
The Department of Health took responsibility for the development of DPULO policy nationally and established a variety of characteristics that DPULOs should demonstrate. These corresponded to two distinct areas:
- A set of values to which an organisation should adhere, including: working from a social model of disability perspective, promoting independent living, promoting human and legal rights, and engaging with all local disabled people, carers and other people who use support services
- A set of characteristics an organisation should demonstrate, including: being legally constituted, having a minimum of 75% of voting members on the management board drawn from the organisation’s constituency, demonstrating sustainability, and working with commissioners.
In addition, there was a set of typical activities and services a DPULO could deliver in order to support independent living, as follows:
- Information and advice
- Advocacy and peer support
- Support in using personal budgets and direct payments
- Support to recruit and employ personal assistants
- Assistance with self assessment and support planning
- (Disability) equality training
- Support the implementation of the Disability Equality Duty by public sector organisations in the locality.
The three areas above are highly inter-related and lead to two distinct features of DPULOs: they operate on both the demand side (i.e. providing the individual and collective ‘voice’ of and for the direct experiences of disabled people, carers and people who use support services) and the supply side (i.e. providing services).
In practice, the need to establish both demand- and supply-side activities and existing arrangements gives rise to a number of potential operating and delivery models for DPULOs. These models often build on the long histories of existing organisations and the types of activities they undertake and include:
- An ‘all under one roof’ approach, where one DPULO covers all or the majority of suggested services and constituency groups
- Umbrella partnerships between existing organisations, with attendant governance arrangements (be they formal, such as a written governing document, or informal, such as a partnership agreement or network)
- Several DPULOs in one area, each providing a specific service(s).
Local history, circumstances and resources often determine the most appropriate approach from a number of options to take in further building the capacity of DPULOs.
A 2006/07 DH study initially identified 647 potential DPULOs across England. However, a follow-up DPULO baseline study carried out for the DH in 2009 noted there are only 66 established DPULOs and 64 local authorities that have no DPULOs at all. A further DH study is being carried out at the time of writing to determine the current national picture as accurately as possible.
At the end of 2007, Putting People First highlighted the importance of independent support services for people navigating the care and support system, irrespective of their eligibility for public funding. As a result it included the requirement for at least one local DPULO per area, alongside support for mainstream mechanisms to develop networks that ensure people using services and their families have a collective voice, influencing policy and provision. This policy support remains in place through both the government’s Capable Communities, Active Citizens adult social care vision and the joint agreement across a number of social care organisations, Think Local, Act Personal.
However, DPULOs support a wide range of policy areas and not just those relating to adult social care. One key area is in supporting public sector organisations in meeting their obligations under the Disability Equality Duty. Similarly, DPULOs embody an efficient, embedded and representative way of delivering what is colloquially known as the “duty to involve” and are a ready-made vehicle for delivering transformation through coproduction.
Another role is in supporting joined up support across social care and health. Local Involvement Networks (LINks) were created through the “Our Care, Our Health, Our Say” Health White Paper in 2006. They provide flexible ways for communities to engage with health and social care organisations, as well as ensure user involvement is at the heart of provision in holding bodies engaged in both the commissioning and delivery of services to account. At present, only two DPULOs in England are the host organisations for LINks. The most recent Health White Paper (2010) proposes retaining the role and function of LINks under the new name of HealthWatch, thus providing plentiful opportunity for DPULOs to engage and drive the continuing work to join up social care and health.
Finally, DPULOs – as civil society organisations run by and for their members and clients – can contribute to the overarching agenda created by the Big Society. 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, DPULOs are extremely well-placed to facilitate citizen contributions to the Big Society agenda.
What work has been done so far to build the capacity of DPULOs?
There has been some previous national activity looking to build the capacity of DPULOs, particularly in order to enable them to support the transformation of adult social care. The DH’s DPULO Development Fund began in March 2008 to build the capacity of 25 DPULOs in total: 12 DPULOs in Wave 1 (March 08–June 09) and 13 DPULOs in Wave 2 (March 09–March 2010). This work was driven by the DPULOs involved themselves and created many learning products. Overall, the DH concluded there were mixed results concerning progress of the DPULOs involved, especially in areas like working with local authorities and sustainability.
Alongside the ULO Development Fund, the DH and ODI also undertook some DPULO capacity building work through the regions, channeling support through the Deputy Regional Directors. In 2009/10 each region was allocated some resource to look to ensure there was a DPULO in each local authority in each region, as well as support coproduction more widely.
As well as work done by central and regional government, the disability sector itself has looked to build the capacity of DPULOs. Disability LIB (“Listen. Include. Build.”) was a partnership of several disability organisations funded from 2008 by the Big Lottery Fund. The partnership provided DPULOs with capacity building information, advice and support to enable them to be more effective in their activities, and finished in June 2011.