Submission to the Senate Community Affairs Legislation
Committee
Inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Introduction
My name is and I live in Victoria.
I write as someone in a unique position to comment on the importance of the NDIS.
My wife and my son are both NDIS participants. My daughter lives with ME/CFS but is not an NDIS participant.
For many years our family has lived with significant disability, serious illness and ongoing care responsibilities. We have experienced the disability system from multiple perspectives and have seen both the consequences of inadequate support and the life-changing benefits that appropriate support can provide.
In addition to my family’s lived experience, I have been involved in advocacy relating to ME/CFS and disability policy, including engagement with parliamentarians and policymakers on issues affecting people living with chronic illness and disability.
Ours is a family that is frequently in crisis. The NDIS has not removed those crises, but it has helped hold our family together.
I support efforts to ensure the long-term sustainability of the NDIS. However, I am concerned that reforms intended to improve sustainability may inadvertently create additional barriers for people with disability, particularly those with complex, fluctuating or poorly understood conditions.
My Family’s Experience
My son has severe schizophrenia.
Before he received NDIS supports, our lives were dominated by repeated psychiatric crises, hospital admissions and constant fear about his safety.
There were periods when he disappeared without warning. On one occasion he went missing without money, a phone, food or water. We reported him missing and then waited for days to hear from police. During that time, every phone call carried enormous significance. We did not know whether we would receive a knock at the door or a phone call. We did not know whether our son would be found alive.
Fortunately, it was a phone call.
Before NDIS supports were available, I would spend nights driving around Melbourne searching for him. My wife and I often felt that we were fighting an impossible battle alone.
My son was repeatedly admitted to acute psychiatric care and was sometimes readmitted only days after discharge. During the COVID period he spent approximately 16 months in a secure psychiatric facility. For long periods we were unable to visit him. At the height of his illness he was so unwell that he denied that we were even his parents.
The turning point came not from another hospital admission but from the social supports provided through the NDIS following his discharge. Those supports helped him reconnect with the community and gradually reconnect with our family.
He remains seriously unwell, but my wife and I firmly believe that the NDIS has kept him out of costly acute care, protected him from homelessness and may well have saved his life.
Most importantly, NDIS supports mean that we are no longer fighting for our son alone.
My wife is also an NDIS participant as a result of severe ME/CFS.
Through my wife’s experience, and through my daughter’s experience living with the same illness, I have seen first-hand the barriers faced by Australians living with severe chronic illness.
The NDIS has provided essential support that helps my wife remain safely at home and maintain a degree of independence and participation in family life. Like the supports provided to my son, these supports are modest compared with the much greater costs that can arise when people deteriorate, become isolated or require crisis intervention.
Concerns Regarding ME/CFS and Future NDIS Reforms
My concerns regarding people with ME/CFS and other complex chronic illnesses include:
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Some people with ME/CFS have been denied NDIS access because they have not undertaken all possible treatments, despite the absence of nationally endorsed Australian clinical guidelines for ME/CFS.
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People should not be excluded from disability support because they have not pursued treatments that government health authorities do not themselves endorse as evidence-based standards of care.
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There is a risk that patients may feel pressured to undertake interventions that are controversial, poorly supported by evidence or no longer widely accepted internationally in order to demonstrate eligibility for support.
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Functional assessments may not adequately capture conditions characterised by post-exertional malaise and fluctuating disability. A person may appear capable during an assessment yet suffer significant deterioration afterwards.
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Disability associated with ME/CFS is often underestimated because its consequences may not become apparent until hours or days after physical or cognitive exertion.
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Many people with severe ME/CFS never submit an NDIS application because the process itself exceeds their physical or cognitive capacity.
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The application process often requires extensive paperwork, specialist reports, appointments and ongoing engagement with complex administrative systems. These requirements can be impossible for people who are housebound, bedbound or experiencing significant cognitive impairment.
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Public specialist waiting lists can extend for years, while private assessments may cost hundreds or thousands of dollars. A person living on JobSeeker or the Disability Support Pension may simply be unable to obtain the documentation required.
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The people with the greatest disability may face the greatest barriers to proving that disability. In practice, the severity of a person’s illness can become a barrier to demonstrating the severity of their illness.
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Access to disability support should not depend upon a person’s financial resources, ability to navigate bureaucracy or access to specialist healthcare.
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The absence of NDIS support should not be interpreted as the absence of need. Many severely disabled people never reach the point where a formal eligibility decision is made.
A Broader Concern
My family’s experiences with schizophrenia and ME/CFS are very different. Yet they point to the same lesson.
Disability supports should not be viewed solely as a cost.
In many cases they prevent far greater costs elsewhere in the health, housing, justice and social service systems.
The NDIS support received by my son has almost certainly reduced the need for acute psychiatric care and has protected him from homelessness.
The support received by my wife helps prevent deterioration, reduces pressure on carers and allows her to remain safely in the community.
Excluding people from support does not eliminate their needs. It simply transfers those needs and costs to families, carers, hospitals and other parts of government.
Recommendations
I urge the Committee to ensure that:
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People with fluctuating and invisible disabilities are not disadvantaged by new assessment processes.
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Eligibility decisions focus on functional impairment and support needs rather than theoretical treatment possibilities.
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Participants are not required to pursue treatments that lack clear evidence or official clinical endorsement.
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The NDIS recognises the unique challenges faced by people with conditions characterised by post-exertional malaise and fluctuating capacity.
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Administrative and evidence requirements do not become barriers for people with severe disability.
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Participants retain strong rights of review, reassessment and human oversight of decisions.
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The long-term costs avoided through effective disability support are considered alongside the immediate costs of providing support.
Conclusion
The NDIS has not solved all of my family’s problems.
What it has done is ensure that we are no longer facing them alone, and that there is hope where previously there was often only crisis.
For that reason, I urge the Committee to approach reform with caution and to ensure that the voices of participants, carers and families remain at the centre of decision-making.
Thank you for considering this submission.