On independent living, the focus of policy should be the destination, not the departure point

Having recently completed some research on independent living, I’ve been reflecting on the framing of policy and the way progress is measured, and how this explains commonplace shortcomings in action and implementation.

The problem with ‘deinstitutionalisation’ as a goal is that it elevates a departure point over a destination and process over outcome. The destination and outcome isn’t disabled people not living in what we class as being ‘institutional care’, it is disabled people living independently & being included in the community on an equal basis with others.

Those of us who wish to bring this about need to paint a vivid picture of what that destination will look like when arrived at, develop measures against which progress on the journey there can be benchmarked, centred on people’s lived experience of choice, control, participation and inclusion and offer a route-map for how to get there.

And while we should mark and celebrate the distance travelled from the departure point on this journey, we should always be counting any progress against the distance yet to travel to the destination, as we would with respect to e.g. ending child poverty, tackling health inequalities or the ending the gender pay gap.

When we don’t do that, we risk tolerating things that, while ‘less worse’ than what went before, like downsized institutional care, still manifest as major inequalities in the life experience and outcomes experienced by disabled people who have no choice but to rely on them. And as we see in Britain and across the world, these supposed ‘staging posts’ become permanent fixtures: the new normal.

If Article 19 of the UN Convention on the Rights of Persons with Disabilities is our ‘North Star’, then disabled people being able to exercise choice and control over where and with who to live *on an equal basis with others* is the acid test, facilitated by housing and support options, and social arrangements, which do not isolate or segregate people from the wider community.

Rather than imagining a transition from one model of care to another, our imagining of the future needs to be animated by a story of freedom.