What is a User-Led Organisation?

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SPECTRUM’s Guidance concerning: what are the unique characteristics of a ULO?

SPECTRUM Centre for Independent Living is an organisation run and controlled by Disabled People. We formed in 1984 as one of the first organisation in the UK that were run and controlled and managed by Disabled People.

We are therefore a User Led Organisation (ULO) and have been since our formation, and indeed, before the term ‘ULO’ was even coined.

With this history and experience, we have built up a range of resources and expertise to guide organisation that wish to be a ULO, and for commissioners who want to encourage the development of more ULO’s. We are able to provide training and consultancy services on request.

This information leaflet has been developed to help interested parties to understand what the key issues are in creating an effective and engaging ULO.

A few years ago, the Department of Health developed a ‘Design Criteria’ of 21 criteria for ULO’s to aspire to. Whilst SPECTRUM broadly supports these, we recognise they are complex and can be off-putting to many. However, we also know that being an effective ULO is a lot more than just having a majority of the organisation’s user-base on the Management Committee or governing bodies.

SPECTRUM has worked with many ULO’s, organisations wishing become a ULO and with commissioners who want to help develop a ULO. As a result of this work we have developed this guidance which helps new and evolving ULO’s to understand what the essential and desirable characteristics of a ULO are.

What is essential for a ULO? and what is just desirable for a ULO?

Understanding what a ULO is:

The starting point for understanding what a ULO is, is the definition developed from the Department of Health’s User-Led Organisation project, which defined a ULO as:

an organisation that covers all local Disabled People, Carers and other people who use support either directly or via establishing links with other local organisations and networks”

It is recognised and accepted that not all new and emerging groups would meet all of the design criteria at the early stages of their development, although they would normally be expected to be working towards meeting them over time. The Department of Health policy also acknowledges that these criteria may be met in a variety of ways according to local demand, resources and circumstances.

It is also important to note that it is not strictly necessary for a ULO to describe itself as such in order to meet the criteria. What a group does, and how it is run, are more important than what they call themselves.

SPECTRUM has observed that the design criteria were not necessarily a good fit for all types of groups (especially non-disability groups). To fix that, we have adapted the criteria in consultation with other ULO’s so that they make more sense in the specific context of ULO development.

These revised criteria are detailed below, providing clarity and comment about what is an essential characteristic and what is desirable or a longer term aim:

 

 

 

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