National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2938
Thank you for the opportunity to make a submission regarding proposed changes to the NDIS which I believe are not only unfairly onerous on disabled Australians but I content are also dangerously violating of our right to consent to our own treatment. Disabled people are already extremely vulnerable in situations where we cannot fully consent to what happens to us. One of the major changes proposed in this legislation that I believe will be extremely detrimental to this right to self-determination (the same rights accorded to all Australians) relates to how the NDIA defines “permanence” in relation to disability.
Under these changes, participants could be expected to try all available treatments before being considered eligible for the NDIS. Importantly, treatments may still be considered “available” even if they are unaffordable, not available in my area, or - as in my case - can not be booked or attended without significant support worker assistance. Ie - I would need support workers in order to be able to attend appointments deemed as necessary for me to access a scheme that would allow me to have a support worker.
I urge reconsideration of the requirement that all available treatments be exhausted before being assessed as eligible. For participants like me with limited cognitive capacities (especially with regard to time management and life skills) to make and keep appointments, how is one expected to access available treatments without the assistance of support workers? There is inbuilt indeterminacy for me and many other NDIS participants about whether I will be well enough on the day of an appointment to attend - and often specialist appointments have to be made months in advance, therefore the consequences of needing to cancel can be catastrophic. There are also no criteria for what treatments are appropriate, which leads this particular change to be extremely onerous and distressing to participants. The mental health impact will be devastating for many participants, especially those who, like me, have sensory sensitivities which make hospital and healthcare environments almost impossible to access without a worsening impact on our disabilities. Once at an appointment, without supports it can be extremely difficult to understand what is being said to us and to make our own disability-appropriate assessments of the suitability of the proposed treatment to our specific condition. I cannot overstate the importance of our consent over own lives and treatment. How many participants would be forced to undertake treatments without consent or understanding if they were given the impression that they needed to undertake the treatment in order to qualify for the NDIS. The central tenant of disability rights is “no about us without us”. I foresee a very real situation in which the right of disabled people to consent to their own treatment is significantly impaired. The damaging stereotype of the malingering disabled person leaves us especially vulnerable because of these proposed changes. What disabled people long for most is agency and respect, and a central part of this is not pursuing available ‘treatments’ that are not only not helpful but can often do ongoing harm. As one example, I waited 4 months and paid $450 to access one specialist psychiatrist who in his short appointment attempted to rediagnose a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2938
condition that was not within his field (a neurological diagnosis that had been made by the head of Neurology at St Vincents hospital). The implications of my needing to accept his proposed ‘treatment’ in order to fulfill these proposed new NDIS guidelines would be catastrophic and lifelong, since they would have involved changes to a medication that, after years of trials, came as close to managing my symptoms was available.
Other aspects of these proposed changes that I believe are extremely alarming are the rights of the minister to make sweeping changes without review and the open door to deem some supports necessary and others not. Capacity building is the most significant component of disability care and relationships, and any changes that impact this key component are detrimental to disabled people. Our support workers work beside us, not for us. They ensure that we understand what is being done to us and allow for the agency in decision making that will ensure that disabled people are far less vulnerable to financial and other kinds of exploitation.