Our job, not theirs

The government is set to take over major decisions on how independent living is operated and regulated. That’s not their job, says Andy Rickell, it’s ours

How much should the government decide or regulate the building blocks of independent living, like direct payments, personal budgets, personal assistance and centres for independent living?

I worry that it might bring in rules that undermine the freedom that independent living should bring. Our voices must be heard before bad decisions are made.

Disabled people created the building blocks of independent living. Direct payments, the forerunners to personal budgets, were developed by disabled people; and centres for independent living were created by the grassroots activism of local disabled people in many communities.

They work because they respond to disabled people and our aspirations.

As independent living becomes government policy, the government is thinking about how to manage it. It may impose old-style ideas. For instance, the 21 criteria proposed by the government for good user-led centres for independent living may become rules that decide which organisations get funding or recognition.

The government is also thinking about setting training standards for personal assistance, which presumably will then have to be checked and regulated. They may also impose financial limits on how much personal budget money can be paid to personal assistants. I sense they want to regulate this.

I caricature the current regulation of disability services as one where one group of people (the government) tell another group of people (the regulator) to check how a third group of people (the service-providers) treat disabled people. This is sadly inevitable because disabled people have no real strategic say in the delivery of disability services.

Contrast that with the power that disabled people have under independent living to decide how our services are delivered. We have power as employers through direct payments, power as customers through personal budgets and power as the members and trustees of our own user-led centres for independent living. Many of the checks and balances to ensure disabled people get a good deal from public funding are already in place.

We therefore don’t need a heavy hand on the basics of independent living. In any case, those with the most to gain from making sure this works are disabled people. We would make the best regulators of the basics of independent living, helping individual disabled people get the best deal for every one of us.

One other concern is how the 21 criteria will be used by government. I can see them becoming the basis for getting grant funding, then for recognition (including the ability to win contracts) and then for how such bodies will be regulated. This would have massive implications for the survival and independence of some disabled people’s bodies. Strong and independent bodies are key in the fight for equality and better independent living support. We should be leading the government’s approach to user-led organisations and making sure we do not sleepwalk into letting government dictate who gets funding and for what.

Disabled people should have the leading role in all the processes and public bodies that decide how independent living is delivered and overseen. We need self-regulation, or rather, “user”-regulation.