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

Understanding ULOs: What is a ULO and what does it do?

Just because an organisation works with people who use services does not mean that it is a ULO. This section explains what a ULO is and what it does.

A basic definition

Here is a basic definition of what a ULO is:

A ULO is an organisation that is run and controlled by people who use support services including disabled people, people who use mental health services, people with learning disabilities, older people, and their families and carers.

(SCIE, 2009)

Remember, we are predominantly talking about ULOs that fulfil recommendation 4:3 in Life Chances, that is organisations that support independent living.

More recently, the Office for Disability Issues has used the following definition that is more explicit about the centrality of disabled people in user-led organisations, as part of its dedicated programme to support and strengthening ULOs. It defines ULO as those organisations that:

• are led and controlled by disabled people and have a minimum membership of 75 per cent of disabled people on their board
• actively demonstrate their commitment to disabled people by employing disabled staff and volunteers
• actively demonstrate their commitment to the Social Model of Disability.

In this case, such organisations are referred to as disabled people’s user-led organisations (DPULO).

The name ‘ULO’ or ‘DPULO’ and who they do or do not explicitly include is not without debate. For example, Shaping Our Lives, the national user network, prefer the term ‘user-controlled organisation’ as this more accurately describes the power that people who use services hold within the organisation.

Shaping Our Lives consultation: definition of a ULO

Shaping Our Lives carried out a brief consultation about developing and sustaining ULOs (2009, unpublished). They said that there are some basics that an organisation should be able to demonstrate if it is to be considered a ULO.

These can be summarised as values, power and knowledge.

• First, a ULO is an organisation based on clear values of independence, involvement and peer support.
• Second, unlike other voluntary sector organisations, people who use services control the organisation (power).
• Finally, ULOs are uniquely identified by their knowledge, which is based on direct, lived experience.

The report concluded that it is crucial that commissioners understand these three key issues – values, power and knowledge – when working with ULOs. In practice, this means that commissioners should explore these issues to understand whether or not an organisation is a ULO.

There are other names that people use to describe different types of organisation, which are summarised below. It is important to note that each name means a different way in which the organisation is run and controlled. As such, the term ULO and those below shouldn’t be used interchangeably.

Disabled people’s organisation (DPO) – This is an organisation for disabled people. The key distinction here is that, though the DPO may work on behalf of disabled people, it may not necessarily be controlled or run by them.

Disabled and D/deaf people’s organisation (DDPO) – This is an organisation possibly of and/or for disabled people that explicitly includes D/deaf people.

As well as this, it is worth remembering that the ‘ULO’ and ‘DPULO’ do not necessarily mean the same thing. Through this document, we use the term ULO.

The Department of Health’s 21 ULO design criteria

The Department of Health produced 21 design criteria to describe what a ULO looks like and the sorts of services that it provides (DH, 2007). A ULO does not have to fulfil all of the design criteria and, in reality, most do not.

The design criteria cover three broad areas:

• the values of a ULO (for instance, promoting the social model of disability. For a definition of the social model of disability, see the Open University definition in the online version of this guide. The independent living section of the Disability Rights UK website has further information.
• how a ULO is governed and managed (for example, that 75 per cent of the members of the management committee are people who use services).
• the sorts of services ULOs provide (such as advocacy and peer support).

It is broadly recognised that the 21 ULO design criteria are a useful guide to the sorts of characteristics a ULO should exhibit, but they are not considered a prescriptive list.

Ensuring inclusivity

It is important to ensure that all sections of the community have the opportunity to have their voice heard and be involved in ULOs. To achieve this, all ULOs – be they new and emerging or well established – need to strive to include:

• all impairment or social care service user groups (including learning disabilities, long-term health conditions, mental health and physical and/or sensory impairments)
• adults of any age
• black and minority ethnic communities
• lesbian, gay and bisexual and transgender people who use services
• carers.

Typical work of a ULO

ULOs provide support so that people can exercise choice and control over how their support needs are met. Typical activities include:

• information and advice
• advocacy
• peer support
• support in using personal budgets and direct payments, and personal health budgets
• support to recruit and employ personal assistants
• support with recovery and rehabilitation
• assistance with self-assessment, support planning and care reviews
• equality training
• campaigning
• employment and return to work support
• partnership activities with local agencies, such as civil society organisations, and health and social services.

Not all ULOs engage in all of the above. It depends on the stage of development of the particular ULO, its purpose, how it is funded, and the formal relationships it has with statutory agencies (including contracts, service level agreements or grants). Some ULOs undertake additional activities not listed above, for example, welfare/benefits advice, access auditing and housing advice.

How many ULOs are there?

A DH study initially identified 647 potential ULOs across England in 2006/2007. However, a follow-up ULO baseline study carried out for the DH in 2009 found there are only 66 established ULOs that met the 21 design criteria and 64 local authorities have no ULOs at all. The discrepancies between these pieces of research were partly explained by the fact the research was based on self-assessment and a lack of familiarity with the design criteria amongst respondents, making it difficult to obtain an accurate or consistent measure.

Following a significant amount of capacity building work focused on ULOs across a range of initiatives and some interim mapping work carried out by Deputy Regional Directors for Social Care in the DH, a the DH carried out a further study in 2010. This estimated that there were around 150 ULOs in England, though not evenly distributed across all local authorities (for example, some had more than one and some still had none).

The most recent data on the number of user-led organisations at time of publication (April 2013) came from the ongoing work of the dedicated ULO programme at the Office for Disability Issues. This has details for around 340 ULOs.

What work has been done to build the capacity of ULOs?

There has been a range of activity to build the capacity of ULOs, particularly in order to enable them to support the transformation of adult social care.

The DH’s Disabled People’s/User-Led Organisation (DPULO) Development Fund ran from 2008 to 2010 and supported 25 ULOs. This work was driven by the ULOs involved and created many learning products, the best of which are summarised on the Department of Health website.

Alongside the ULO Development Fund, the DH and ODI also undertook some ULO capacity building work through the regions, channelling support through the Deputy Regional Directors for Social Care. In 2009/10 each region was allocated resources to try to ensure there was a ULO in each local authority in each region, and to support coproduction more widely.

As well as this work by central and regional government, the disability sector itself has looked to build the capacity of ULOs. Disability LIB (‘Listen. Include. Build.’) was a partnership of several disability organisations funded from 2008 until 2011 by the Big Lottery Fund. The partnership provided ULOs with capacity building information, advice and support to enable them to be more effective in their activities. Some of the resources developed by this project remain available on the Disability LIB website.

Since July 2011, the Office for Disability Issues (ODI) has run the Strengthening User-Led Organisations (DPULOs) Programme. The programme is a £3 million investment over four years that will aim to promote growth and improve the sustainability of DPULOs.