For myself and many other Australians with disability, it currently feels like everything is changing, yet everything is staying the same.
Two major reform processes — the Disability Royal Commission and NDIS Review — are unfolding as I write; striking in their breadth and depth and daunting in their complexity. Taken together they have made 248 recommendations with 139 supporting actions, covering everything from inclusive education, employment and housing, to ending legal violence, and the sustainability and fairness of the NDIS.
Those hundreds of recommendations are a reflection of just how far Australia has to go to be fair and inclusive for people with disability. Because let us be clear — it is not us who have to change, it is the systems that exclude, harm and overlook us. But the risk now is that inertia sets in. With so much that needs to change, where do we start? The disability community has the answers, and governments must listen to us.
The Priorities Project has been undertaken by, and for, people with disability. It is an evidence-based distillation and prioritisation of the recommendations from the two major reform processes the government is undertaking.
Our approach was simple; we asked those who know best — people with disability, their families and advocates — about where we need to begin to build an inclusive community.
We identified six priority areas to focus on, with corresponding actions that could be taken in the next year or two to improve the lives of people with disability. In my conversations with fellow disability advocates, one priority came up time and time again: housing.
It is no secret that the whole of Australia is in the midst of a housing crisis, and the government has made its effort to address this a central selling point of the budget. Skyrocketing rents and mortgage repayments bite harder for people with disability, because on average we earn less than other Australians (not helped by the fact that many parts of the job market remain inaccessible to us).
But the government once again ignored calls to raise Jobseeker or the Disability Support Pension above the poverty line. And its plan to build 1.2 million homes by 2029 — despite having the potential to play a critical role in the transition away from group homes — has not adequately addressed the housing challenges people with disability face.
One constant challenge is finding, affording and getting permission to install home modifications — ramps and rails being a common example. Currently, it is near impossible to get home modifications outside the NDIS. But 88% of Australians with disability are not on the scheme.
That is why we are recommending a new home modification scheme be created outside the NDIS. It could be modelled on a similar scheme that already exists for modifications within workplaces, meaning there would be no need to reinvent the wheel, system-wise.
We also recommend trialling “navigators” to support people seeking specialist housing, so we do not need to go into hand-to-hand combat with a housing system that does not understand our needs.
Navigators are similar to disability advocates in that they both help people understand and get the best out of complex and confusing systems. This was another area where the budget let us down. Currently, every second person who seeks advocacy support — often to deal with abuse, neglect or unfair treatment — is turned away to deal with the problem on their own because of a lack of advocates.
We asked for $91 million in extra funding for advocacy in the budget to fill the gap, but the government did not deliver. Instead, the focus was on how much the government intends to save money by making the NDIS “sustainable”.
There is no doubt the NDIS needs to change to make it work better for people with disability, but we need reassurance from the government that these changes will not leave people in the lurch. The government has committed to working together with the disability community on NDIS changes and it must stick to its promise, because the best solutions come when decision-makers listen to us.
People with disability are too often seen as problems to be solved, rather than the problem-solvers: people with agency to act, ambitions, loves and lives to lead. That is why the priorities and initiatives we are recommending focus on practical ways people with disability can take greater control over supports and services, and test-drive new ideas and programs.
There is much work to do, but this is where people with disability say we should start. Now it is up to politicians to listen and act.
This piece was published in collaboration with 360info.
