In last week’s Service User Voice, Ian Loynes described the precarious position of user-led organisations perfectly.
On the one hand, we have won the moral and practical arguments – through these organisations service users can and should be involved in the decision-making, monitoring and evaluation of services. It’s not good enough for users to be “consulted” in a market-style exercise from time to time. Even the government has been convinced, and says so in Improving Life Chances for Disabled People. It’s even set up its own consultative body, Equality 2025, which consists entirely of disabled people.
On the other hand, funding to user-led organisations is being cut all over the country because, as Ian Loynes points out, local authorities don’t have to fund them. And the support disabled people need is being cut as well, from withdrawing services from anyone with less than critical or substantial needs, through to “reorganisation” of day services, (which are slowly being re-labelled “day opportunities”) which, somehow, always ends up costing less…
What I’ve noticed is that this is having an effect on the very people who have spearheaded the changes in attitudes. Service users who have taken on the system – don’t forget that we are, by definition, vulnerable mentally and physically – have used much of their valuable time and energy in understanding the bureaucracies they have had to contend with. They have also had to develop advocacy, organisational and management skills, so that they can run their organisations effectively, and to prove themselves as effective advocates to the local authority managers and planners as well as being competent fund holders.
As community leaders, we have tried to motivate and energise into action our colleagues who are not only disabled and chronically ill, but who have historically seen themselves as second-class citizens with few prospects. Believe me, over the years, that’s an energy-sapping role. It seems to me that, of the bands of stalwarts all over the country who started the user-led organisations, many have died young (an occupational hazard of disability), or become too ill or tired to carry on the struggle – and there are fewer younger people willing to take on the role.
I’m sorry to say that having won the argument, we are in danger of losing the battle through lack of funding, support and, most importantly, people willing to be involved.
Simon Heng is a wheelchair user and is involved in user-led organisations