National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1762
I am writing this today as a current participant of the NDIS, and as an Australian that has lived with disability all of my life. My lived experience is intrinsic to my thoughts on the changes proposed to the NDIS legislation, and my profound opposition to them.
The NDIS, from the beginning and at its core, was designed to bring equity to the lives of disabled Australians, to allow us to live with independence, dignity, and agency, as free as possible from the hidden, implicit tax that is the everyday burden of life as a disabled person.
I am all too familiar with that tax, and that burden. I live with neurological disability, psychosocial disability, and comorbid physical disability; my base life experience is one of struggle, and of pain, and anything good that I have I had to build for myself against odds stacked against me. Becoming a participant on the NDIS has meant that some of that burden has been removed from me, and I am able to seek out and utilise the supports that I have long needed without having to sacrifice in areas of my life that the average able-bodied Australian simply does not.
Of particular concern is the apparent proposed changes to eligibility criteria, particularly around the concept of “permanence” - being required to seek out, try, and fail all possible treatments is frankly not feasible for a lot of people on the scheme. For many disabilities treatments are not readily available, or are prohibitively expensive. When they are Medicare funded - which many treatments for many disabilities are not - disabled persons face waiting lists that are often years long. I am currently on the waiting list to be on a waiting list to see a specialist in one of my areas of disability for evaluation, and have been for nearly a year; it’s likely I will be waiting years to see them, if ever.
If my eligibility was reconsidered under such a term of “permanence” then I would likely be blocked from access to the scheme for quite some time, until all options were exhausted and entirely at my own expense.
My disabilities saps what little energy I have after I complete my work day at the job I am obligated to hold down to be considered an active and contributing member of society. I have lived, as I said, with these disabilities all of my life, and I am not young. The crushing weight of dealing with them has left me burned out, and in even greater need of the supports that NDIS already provides me, and a number of others I am in the process of seeking.
Without these supports I would be living in clutter and mess, in an unhygienic space I would lack the energy and executive functioning to clean on a regular basis.
Without these supports I would have significantly less social connection, and would remain mostly within my home, as getting out takes effort I often don’t have to give it on my own.
Without these supports I would be a burden upon my family and my friends because it is increasingly clear that coping with it quietly and all on my own for so long has left me without anything left to give, and I would have no choice but to seek it out from people who are not paid to help take care of me.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1762
Without these supports I would find myself out of pocket by well over another thousand dollars a month - a more literal form of the euphemistic “disability tax”.
There are so many other things this government could be focusing on to bring in the revenue that is needed, rather than focusing on crude “cost reduction” measures such as what this bill seeks to achieve at the expense of some of the most vulnerable people in this country. Taxing gas exports, closing taxation loopholes for large corporations, and forcing the richest Australians to pay an actual, equitable share of the tax, rather than giving all of these things away as handouts and using disabled Australians as a scapegoat.
I urge you: do better. Yes, the scheme has some fraud taking place, because everything in every government everywhere has some amount of it. But don’t punish the participants for that. Instead live up to the promises that this and other governments before have made to us, and actually help.