The Simon Heng Column – 28 September

Peter Beresford’s article about service user involvement, like his other comments, is accurate and comes at the right time. If this government is serious about disabled people taking an active part in their future, and the future of this country, then service user organisations need to be supported – and in particular, funded adequately.

Supporting these user-led organisations isn’t just a question of paying for premises and the wages of any paid workers. “Volunteers”, by which I mean the disabled people who give up their time freely, who do most of the work, attend meetings with the professional decisionmakers and service providers (who have their own support systems of administrative workers and information-sharing networks), rarely get the support they need to contribute equally well; they are hardly ever fully compensated for their expenses, and rarely get paid for their involvement, however much effort and time they put into what they do.

For example, the annual transport costs, just for the trustees meetings for our service user organisation, runs into thousands of pounds. To transport our hundreds of members to regular meetings in their locality would cost many thousands more – and we just can’t afford it. And we can’t expect our members to subsidise this: most of them are on low incomes – usually means-tested benefits – and they can rarely afford their own transport.

But how can an organisation like this thrive and develop, identify difficulties and share solutions, campaign effectively, without its members meeting up regularly?

In Barnes and Mercer’s Independent Futures a survey of service user organisations highlighted the struggle to involve more than a hard core of disabled people. One of the reasons for this, the authors thought, is that we have a “passive democracy”; we elect individuals to do a job for us, then the majority feel that their active role is over. This may be true, but how is it going to change unless the most vulnerable and most excluded are properly supported, and their contributions valued?

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