WHO better to lead the movement for independent living than organisations run and controlled by disabled people committed to campaigning for the rights of disabled people?

“What’s empowering about the relationship with a user-led organisation (ULO) is being part of defining your own solution,” says Ian Loynes, the chief executive of the Southampton Centre for Independent Living (SCIL).

Organisations such as SCIL help disabled people to understand their rights using the principles of a social model of disability. The premise is that what stops disabled people getting on is not their impairment, but society’s failure to take account of their diverse needs. Once aware of the barriers that prevent them achieving equality, they can remove them.

Julia Winter became a service user 12 years ago. After her own positive experience of taking part in the individual budget pilot in Essex, she was inspired to set up a user-led social enterprise called Liberation Partnership, with funding from Essex County Council. As part-time director of the organisation, Winter helps individual budget users to navigate the new system and make key decisions about the services they need. “It’s about putting the disabled person at the centre – they [and not the professionals] are the experts.”

The Government’s rhetoric on ULOs is encouraging. According to the 2005 report Improving the Life Chances of Disabled People, each locality should have a ULO modeled on existing centres for independent living by 2010. The Department of Health has allocated £850,000 in 2007-08 to support the development of 12 user-led organisations to implement recommendations in the report.

These organisations have difficulty securing local authority funding and rely on grants or national lottery funding to survive. Where local authorities put support out to tender, user-led organisations struggle to compete with the traditional charity and commercial sectors to win contracts in the marketplace, where cost is an overriding factor.

Ivan Lewis, a health minister, says that a revised protocol to support the development of ULOs could ease difficulties with funding and local procurement processes. “ULOs ensure that people using services and their families have a collective voice, which influences policy and provision.”

They face the challenge of professionalising their services. If ULOs can prove their worth, they must be assured of a fair arena in which to flourish, Loynes says.

“SCIL is the biggest and most progressive user-led organisation and yet we struggle every year to continue to exist,” he says. “If we don’t want to create a future where Asda runs the social care sector, we have to create an environment where alternatives to that can survive.”

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