Independent living: Don’t crack open the champagne yet

By Simon Stephens on May 2, 2007 in Disability

History is made when something deemed new and good is some years later deemed old and bad, and is therefore scrapped. The Independent Living Fund seems a perfect example of this: the saviour of people with high support needs in 1989 is now, in 2007, a nightmare relic.

While the so-called independent living movement is fearful to acknowledge it, times have changed and for many disabled people independent living is now a reality. But is it time for champagne? Is the kind of independent living we have now what disabled people really wanted? Has the greatest achievement of the movement, direct payments, passed its sell-by date?

I argue direct payments were designed only for people who bucked the system of direct services and it could be argued that individualised budgets were intended for those who buck the system of direct payments. So the more strong-willed disabled people are, the more the government admits it cannot cope and gives disabled people the money to be quiet.

We live in an era where disabled people as young as 16 are given the funding to become responsible employers. Even though have I employed staff for 15 years, I still make mistakes!

So what do disabled people want? Well, I think good personal assistants – and I don’t mean carers. Although people seem to use the terms personal assistant and carer interchangeably, they are totally different roles. The social care agenda and the advent of NVQs and fear of registration have turned carers into enemies of disabled people, where freedom and choice are replaced by protection and warehousing!

Personal assistants employed by disabled people must accept their employer’s choices, decisions and wishes. They must support the disabled person’s right to take risks. Failure to do so means the sack.

So is the only way to have good personal assistants, the self-employment route and having the money paid to them? I argue that disabled people should have an option to have the flexibility of a personal assistance package without the hassle of the paperwork. There should be personal assistant agencies who can meet the real needs of disabled people. Only then can disabled people enjoy their independence.

Simon Stevens is chief executive of Enable Enterprises

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This article appeared in the 3 May issue under the headline “Bubbling under