CILs and User Led Organisations are Different

This article was written by Hazel Peasley.

Below is a statement taken by a network/consortium of Disabled People’s organisations called “Our Lives R 4 Living”, to the recent national consultation day organised for the Department of Health, by the Care Services Improvement Partnership (CSIP). 

The event was held to discuss and consider how best to achieve the successful implementation of Recommendation 4.3 of the Cabinet Office report published last year called ‘Improving the Life Chances of Disabled People’. 

This recommendation of the report called for the establishment of Centres for Independent Living (CILs) in every local authority Social Services area by the year 2010. At the end of the day long consultation event, an indicative vote was taken on the below statement.  No one voted against it.  This is despite such organisations as carers’ groups and charities like Scope and the Rowan Trust raising objections to it. 

A substantial number of those present, including a number of people representing such organisations not controlled by Disabled People, protested at the limited time available before the Department of Health concludes its consultation process on this important issue, by abstaining on the vote.

As is inevitable when such a short time exists to consider and decide on such matters (there has only been a total of six weeks for this consultation exercise) a number of drafting amendments
were suggested from the floor by those at the event.  Only one such amendment, proposed by Richard Downes representing the Disabled People’s organisation Brent Advocacy Concerns (BAC), was added to the statement and appears at the end as ‘Number 3’.  This amendment was accepted by those proposing the main statement on behalf of “Our Lives R 4 Living”. 

Other versions of this statement which take into account various of these other minor changes discussed but not voted upon, have been circulated since the event, but for clarity I am only posting here the one actually voted upon and passed at the meeting (which included the amendment proposed by Richard Downs). 

The below statement, adopted by the meeting, sends a clear message to Central Government about the views of Disabled People and our organisations concerning this very important matter.  

The statement reads:

‘We understand the clear distinction which exists between organisations led by people eligible to access services (sometimes referred to as User-Led Organisations or ULOs) and organisations routed firmly within the Disabled People’s Movement (referred to as organisations OF Disabled People). These latter groups, whilst being led by people eligible to access services, are distinct because they apply social model principles.  These groups are owned, led, managed and staffed in the majority by Disabled People; they are usually cross-impairment with strong principles of democratic accountability.

There is a clear role for User-Led Organisations (ULOs), which are not members of the Disabled Peoples Movement, e.g. some carers’ and children’s organisations or those set up to enable involvement within a particular service.  Such organisations are not the same in character as those which the ‘life chances’ report sought to promote (‘Improving the Life Chances of Disabled People’, January 2005).

‘Improving Life Chances’ laid down a clear principle that there should be an organisation of Disabled People modelled on Centres for Independent Living (CILs) in every locality (local social services area) by the year 2010.  A CIL is a social model based, cross-impairment organisation, owned and controlled by, and accountable to, the Disabled Community.  A CIL supports
Disabled People to live independently through peer support, campaigning and providing user-led services.

This meeting strongly supports the establishment of such organisations and believes that this will be a vital contribution to ensuring that genuine and authentic independent living services exist for Disabled People by maintaining the independent voice of the Disabled Community.

This meeting affirms that for such Centres for Independent Living to be successful, effective and sustainable, they need to be underpinned by social model principles and accountable directly to the local communities from which they spring and seek to serve.  ‘Top-down’ structures imposed centrally are destined to fail.

This meeting proposes to the Department of Health (DoH) that existing Centres for Independent Living and other parallel social model based organisations, owned and controlled by Disabled People at a local level, are best placed to support the widening of Centres for Independent Living.  A consortium of such organisations should be resourced by the Department of Health to ensure the effective establishment of independently funded Centres for Independent Living across the country.  To this end, a working group of CIL representatives should be set up without delay and resourced by the Department of Health to found such a consortium and draw up detailed implementation plans for the establishment of Centres for Independent Living across the country.

Finally, this meeting firmly believes that the current consultation exercise being conducted on behalf of the Department of Health to ascertain the views of ULOs regarding the establishment of Centres for Independent Living in line with ‘Improving Life Chances’, is to be welcomed.  However, if the momentum of the process is to be maintained and the 2010 target is to be achieved, this meeting believes that transparency, openness and accountability are all essential.  For this reason, the report produced as a consequence of the current consultation exercise must be published and shared fully with Disabled People.  This will help the process to be meaningful, genuine partnerships to be built and trust to be maintained.

This meeting therefore urges Department of Health to demonstrate its support for and commitment to this important agenda by:

1. Agreeing to support and resource adequately the establishment of a resourced network of existing Centres for Independent Living with a view to ensuring that they play the leading role in delivering new Centres for Independent Living in areas where they do not exist yet.

2. Publishing without delay, the full report of the current consultation exercise, including any recommendations, conclusions and proposed actions suggested as a consequence of this process.

3. Prioritising the funding and re-enervation of existing organisations OF Disabled People with a proven commitment to the inclusion, independence and equality of Disabled People.


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