It’s past time for the big conversation
‘Nothing about us without us!” It’s the plea, the demand, the expectation of disabled people when it comes to decisions being taken that directly affect us. It is often appropriated by non-disabled officials in an attempt to demonstrate that they identify with our cause.
The current controversy regarding the changes to purchasing rules for disability support and equipment modification services are disturbing for two reasons. First, the changes were delivered in a culturally inappropriate way. Disabled people, and those who provide support to those of us who require it, were disrespected. That is not OK. It is not consistent with the principles of “nothing about us without us”.
Second, both the reality of the cuts and the speculation about them that has filled the vacuum are causing immense distress and anguish. Officials may try to euphemistically label what has happened a “pause”, but if funding was available only a few days ago, and it’s not now, that’s a cut, even if it turns out to be temporary.
As a disabled person with a public policy background, I want to focus on how it came to this. How is it that in a First World country, successive governments have put creating a cohesive, consistent framework for supporting disabled people in the toohard basket?
While any government clearly must live within its means, there are provisions deemed so important they are not rationed. Work and Income payments come to mind. If someone finds themselves out of a job and in need of support while they search for another, they don’t have to worry that the appropriation for the Jobseeker Support payment might run out. Indeed, for those eligible, the Supported Living Payment for disabled people works the same way. Yet we have not had the big conversation as a country about what other disability-related provisions should be available without any funding cap. Such entitlements are an economic investment in some cases, and a moral statement about who we are as a country in all cases.
Disability encompasses a wide range of impairments. For people like me, who are active, holding down a job, living in the community and having raised a family, the support I require involves practical things like specialised equipment that is often expensive, and active work to remove attitudinal barriers that might make finding a job more difficult. I’d like to think that any government would see that as investment in capacity-building. Fund those things on an as-required basis, and many of us will return the investment by contributing to the tax base and using our discretionary dollars at local businesses. The present Government wants more disabled people working. I do too. That requires investment on the demand and supply side.
Even with such investment, we must accept that what constitutes a good life will vary markedly within the disability community. Human beings are much more than mere economic units. Some of us require intensive support, a considerable amount of which is coming from family members who are often stressed and exhausted. They too should receive support and compassion. Rationing the meeting of those needs is a conscious choice, and it is an ethically dubious choice.
The Enabling Good Lives model has been designed by disabled people. Our sector has been chronically underfunded by governments of all political persuasion for decades. Little wonder that a framework that seeks to meet our needs fairly has exposed the magnitude of that chronic underfunding.
The disability sector comprises a huge number of organisations. Some of them are large and have wellestablished independent sources of revenue through charitable giving, others are small and struggling to make ends meet thanks to government contracts that have not kept pace with inflation while provider costs continue to skyrocket. On top of that, the services a disabled person is entitled to will depend on whether you acquired your impairment because of an accident or through a medical condition. Now there is even more variation, depending on whether you are located in an area where individualised funding has been rolled out.
The top priority is for the current stressful situation to be resolved with urgency. Then I urge all parties in Parliament to form a group to discuss an end to rationing, the abolition of anomalies around entitlement based on the cause of someone’s impairment, and funding for the sustainable roll-out of individualised funding, which can be transformative for disabled people and those who support us.
And one more thing. Not one major political party had a recognised member of the disability community in a winnable position on their party list for the 2023 election. If there were a disability caucus in Parliament, I can tell you now, disabled people and their supporters would not have had to endure what we have this week.