NDIS: A step out of the dark
This was originally published in The Conversation 23 June, 2012
Now that people with disabilities are no longer shut away in institutions, we must make further efforts towards social inclusion, starting with the NDIS.
Early on in my career I was part of the process of closing down large-scale institutions for people with disabilities.
My first experience of institutions was as a student. I visited Swanbourne Hospital in Western Australia with Bob Jackson, my supervisor who was the superintendent of Pyrton - a large training institution for people with disabilities. Bob was hell-bent on seeing institutions replaced with community facilities. He thought it might be good for me to see a really Dickensian asylum to get an idea of why this was important.
Swanbourne housed large numbers of older people with psychogeriatric conditions and severe intellectual disabilities. It's difficult to describe my shock at being amongst hundreds of people with severe disabilities, wandering in a spartan, desolate environment of perfunctory clinical care with almost nothing meaningful in their lives.
On the day, I stayed close to Bob as I was approached by oddly behaving residents, often only partially dressed. They were quickly shooed away by staff worried that Bob might be offended by them.
Residents lived as a group in enclosures with linoleum up the wall to about shoulder height to make it easier to hose out and mop. Their outside recreation area was a small concrete or asphalt yard with three-metre high walls. At the time, following a long campaign, there was pressure to close Swanbourne and the staff had just been on strike. Volunteers and students who stepped in to care for the residents discovered that many had not been outside of the institution for years.
As Phillip Zimbardo's classic studies of institutionalisation demonstrated, the staff themselves become institutionalised in settings such as Swanbourne. Ordinary people become desensitised and immune to extraordinarily unreasonable conditions for people who have little capacity to advocate for themselves.
It takes an enormous effort to provide a humane, respectful and meaningful environment in these settings. Not surprisingly most people, like me, who saw places like Swanbourne for the first time, decided closing them down and moving people into community settings was a much better alternative.
But closing institutions and replacing them with accommodation and services in the community was only part of the struggle for people with disabilities. Deinstitutionalisation, mainstreaming and integration into everyday settings in the community, including schools, workplaces and recreational and social activities are easier said than done.
Social barriers to participation in work, education, recreation and social activities in everyday life are now the challenge for disability advocates. In many ways, this is more difficult than closing down institutions. Living an isolated life in the community without a job, friends or meaningful engagement is still the reality for many people with disabilities living in community residential settings.
Not only are the barriers preventing social inclusion for people with a disability significant, services are still spectacularly underfunded. The recent Productivity Commission Report made it clear we probably need to double funding for people with a disability if we are going provide them with a reasonable quality of life.
We under-invest in the staff who work in these settings, and there's not enough emphasis on support services to promote social inclusion in employment, schools and everyday community settings. Young adults with severe brain injuries who need ongoing residential care still end up in nursing homes.
The National Disability Insurance Scheme provides the best hope I have seen in a generation for addressing these issues. The NDIS is a national no-fault social insurance scheme that could provide a guaranteed level of financial support for people with a disability through a national fund. It would effectively create an entitlement scheme for people with a disability based on their needs.
I can recall discussions about establishing a national social insurance scheme to fund disability for at least 20 years with little interest or take up. The success of the current campaign takes my breath away. It is a model of modern agenda setting and advocacy using every strategy and tactic available in the pursuit of an outcome that it's difficult to argue about. And despite the bad press the Gillard Government has attracted for other things, its decision to proceed with the NDIS will surely go down as a watershed in Australia's social policy history along with Medicare, superannuation and the aged care reforms of the 1980s.
Hal Swerissen is a Professor of Health Policy at La Trobe University