Submission 712
Submission on Proposed Changes to the NDIS
I am an active participant of the National Disability Insurance Scheme (NDIS), as well as a full-time employee at ANSTO on the Lucas Heights campus. I am also a spouse, a daughter, and an engaged member of my community.
The NDIS is not an abstract program to me it is the foundation that enables me to live a productive, dignified, and connected life. It allows me to maintain my full-time employment in a highly specialised STEM role, support my household, and actively participate in my social and community networks.
Importance of Current Supports
Without the supports I currently receive through the NDIS, I would not be able to:
Sustain my full-time employment in nuclear medicine production work I studied and trained for over more than a decade
Safely attend work, medical appointments, and essential appointments
Maintain independence in daily living tasks
Continue meaningful engagement with my community and support networks
These supports are not luxuries; they are essential enablers of my participation in society. Without them, I would likely be forced to leave the workforce resulting not only in personal loss, but also in the loss of a highly trained contributor to Australia’s critical health infrastructure.
Concerns About Proposed Changes
The proposed amendments to the NDIS raise serious concerns for myself and many others in the disability community.
Firstly, there is a significant lack of clarity and transparency. The changes are not clearly articulated, and the reasoning underpinning them is difficult to understand. This creates uncertainty and fear in a community that already faces daily barriers and challenges.
Secondly, the requirement to exhaust “all available” treatment options before eligibility is both unrealistic and, in many cases, dangerous.
My disability is complex and largely genetic, involving multiple interconnected conditions. While I have pursued treatment where possible, I have not been able to try all theoretical options due to:
Medical risks (including treatments that could cause serious harm or death)
Financial limitations
Lack of availability within Australia
To suggest that individuals must attempt every conceivable treatment including experimental or high-risk interventions such as gene therapy demonstrates a lack of understanding of disability and medical reality.
Issues with “Permanence” Criteria
The concept of “permanence” in disability must be handled with care and expertise.
Submission 712
My condition is progressive and degenerative, yet it has previously failed to meet rigid interpretations of “permanence” because it does not fit neatly into a predefined category of disability. However, the reality is that without assistive supports such as my wheelchair, I am unable to move independently beyond my bed.
At the same time, my condition can unpredictably lead to paralysis if I move incorrectly. There are no safe or viable treatment options available to eliminate this risk.
If the definition of permanence is to be altered or tightened, it is critical that:
Assessments are conducted by appropriately qualified medical professionals
Conditions that do not fit traditional or simplistic definitions are still recognised
Lived experience is given appropriate weight
Broader Impacts
The stress and uncertainty created by these proposed changes do not only affect participants they extend to families and carers.
My husband, a full-time high school science teacher, is already under significant workload pressure. These changes have added further emotional and practical strain.
My elderly parents, who should be enjoying retirement, are now deeply distressed by the uncertainty surrounding my future and the broader disability community.
This policy direction is not occurring in isolation it is impacting entire family systems.
Lack of Consultation and Process Concerns
The limited consultation with the disability community, combined with the short timeframe provided to respond, raises serious concerns about the intent and integrity of the process.
For a community that is already vulnerable and often marginalised, this approach feels:
Rushed
Dismissive
Disrespectful
Meaningful reform must involve genuine engagement with the people it affects most.
Conclusion
The NDIS is not merely a funding scheme it is a system that enables people with disability to live with dignity, independence, and connection.
The proposed changes risk stripping away critical supports, forcing individuals out of employment, isolating them from their communities, and placing additional strain on families and informal carers.
This is not reform that strengthens the NDIS it is reform that undermines its core purpose.
I strongly urge the government to:
Reconsider these proposed changes
Submission 712
Engage in genuine consultation with the disability community
Ensure any reforms are evidence-based, transparent, and grounded in lived experience
The disability community deserves stability, respect, and support not uncertainty and fear.