The Council of Australian Governments (COAG) is meeting today. High on the agenda is the implementation of a National Disability Insurance Scheme (NDIS). The negotiations around this scheme will be tough, but have the potential to herald significant change in disability policy and practice.
Australians like to think of ourselves as a pretty independent lot. We make up our own minds. Research has shown that we are much less likely to be co-erced into doing something and we have an expectation that people are treated equally.
Although the rate of disability in the community is relatively stable, the outcomes for people with a disability in Australia have deteriorated in the past ten years, including the worst poverty rates in the OECD. The chasm between those who are witness to disability, and those who are not, has been broad and wide. People with a disability are more absent from our workforce than most other OECD countries, and more absent than they were ten years ago. Significant issues of exclusion of people with a disability reduce their social circles, and the chance to fit in, to belong.
Unless we know someone with a disability there is a fair chance our attitude towards disability will be at best, disinterest, and at worst, outright hostility. Unlike other issues of community division, this one is not about foreigners versus Australians or environment versus economy. It is about the existence of a subclass of Australians that have been ignored and stigamtised for decades.
Margaret Heffernan, author of Wilful Blindness argues that “we mostly admit the information that makes us feel great about ourselves, and filter out whatever unsettles our fragile egos and most vital beliefs.” For those without experience of disability, there has been a prevailing myth in Australia that we are a caring and charitable nation that takes care of the vulnerable. We have strong emotional reasons for wanting to believe this, and there has been significant opposition to those who state otherwise.
It is well documented that we find it easier to believe what others do, but research also shows that we actually see what others expect us to see. This can make a cultural shift away from negative attitudes a difficult, if not impossible undertaking. The passive acceptance of the views of others creates an inherently conservative mindset when it comes to things we do not have personal experience of. Many Australians simply do not want to know that the problem exists, and they certainly do not want to pay for a solution.
Many individuals and groups have actively fought to change our thinking. A recent PwC report details some of the milestones along the way. The recent work of the Disability Investment Group, Bill Shorten, Australians Mad as Hell and the Every Australian Counts campaign, to name a few, have taken up the challenge of making disability an issue for all Australians.
It would appear that we are nearing the tipping point where enough Australians have removed the scales from their eyes to create a change.
However the challenge is also a cognitive one when it comes down to the ability to make it happen. As Heffernan notes, “when we care about people, we care less about money, and when we care about money, we care less about people.” We are simply hard wired to find it difficult to do both at once.
The fact of the matter is that someone needs to pay for the NDIS. The two main candidates are federal and state governments. The only way forward is a national scheme, similar to Medicare, and as detailed by the Productivity Commission.
The ongoing tension of our federal system was highlighted in the school chaplains case in June this year. While there is a clear head of power for the Commonwealth with respect to disability, related to our obligations under the international Convention on the Rights of Persons with Disabilities, the more complex problem is finding the cash.
Unlike the school chaplains program, where the federal government had the funds, but not the constitutional power to make laws to spend them, up to 80% of disability funding is raised by the states.
The states appear to be coming to the table. Recent reports suggest that they are vying over launch sites, with some states offering to set aside funds, and others arguing that the Commonwealth should pay the entirety.
The deliberations in this area are critical; the only possible way for this scheme to work is with commitment from all levels of government.
Meanwhile, the people most affected sit and wait.
Mark Zangari is the CEO of a software company. In February this year he was paralysed by a spinal haemorrhage that came out of nowhere. No warning, no risk factors, no illness. It just happened.
He was incredibly lucky. A successful surgery and a short course of physiotherapy later he is back to normal. Except that “normal” has changed for him.
“Intellectually I know that over time the feeling of what happened will wear off” he says. But it hasn’t yet. “Even now there is an alternate self following me everywhere I go, into the kitchen, at the airport, overseas, it is there, this “other Mark”, asking me every step of the way how I would manage if I was paraplegic like the doctors expected.”
The short answer is he would not. “I have lived this ‘alternate self’ for months now. And I know, I feel, I accept, that I could not be the person I am if I were paralysed. The long haul business trips, flying from country to country, back to back meetings, being wherever a client needs me to be. I simply couldn’t do it, no matter how hard I tried. I would have become a different person. I am sure of this.”
For many people with a disability the “alternate self” is not a self without a disability, but a self with appropriate support. A self where wheelchairs are provided as needed, where therapy occurs in time to facilitate ongoing education, where personal support workers are provided so that a hospitalisation does not become the trigger for unemployment and social isolation.
The potential life, achievements, friendships, career, and family of that alternate self are drifting further and further away with every day of inaction. The gap between the potential of the individual and the reality of a system that excludes and disables at some point becomes irreversible.
At some point the opportunity is lost to restore function, enhance ability, maintain hope. For some Australians, this is already the case. We have a moral obligation to ensure we do everything we can as a nation not to increase that number.
COAG has significant and important work to carry out today.