Submission 1453
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Anonymous Family Carer Relationship to participant: Parent and primary carer Participant: Adult child, 26 years old, current NDIS participant with multiple diagnoses Date: May 2026
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INTRODUCTION
I am the parent and carer of a 26-year-old who lives with multiple diagnoses that significantly impacts their daily functional capacity. I work full time and balance paid employment with an ongoing caring role.
My child has been an NDIS participant since 2020, and the scheme has made a significant difference, not only for them, but also to our family. The therapy and supports funded through the NDIS including psychological, occupational therapy and exercise physiology along with practical support for daily living and community participation have enabled my child to obtain a degree of independence, participate in the community, and manage their disabilities in ways that would not have been possible without structured, reliable assistance. The supports through the NDIS have also made it possible for me to continue working full time and to sustain my own health and wellbeing.
I understand that changes are needed to the NDIS, but I make this submission as I am deeply concerned about the way the current National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 is drafted. The bill, as currently drafted, risks causing lasting harm to not only my child and our family, but to the many thousands of other families across Australia who are in similar positions.
I raise four specific concerns about the bill: the inaccessibility of the consultation process; the failure of the proposed functional capacity framework to capture the full picture of complex, multiple disabilities; the inadequacy of the alternative supports the government proposes to put in place; and the deeply troubling requirement that people must exhaust all appropriate treatments before being considered eligible for the scheme.
1. THE CONSULTATION PROCESS IS INACCESSIBLE — FOR CARERS AS WELL AS PARTICIPANTS
The Bill was introduced to Parliament on 14 May 2026, two days after the Federal Budget, with a Senate Committee submission deadline of 29 May 2026.
Submission 1453
The two week timeframe for submissions is not reasonable given the complexity and extensiveness of the changes proposed and the potential impacts that these changes will have.
I am fortunate that I have a good level of literacy, access to the internet, and some understanding of how government processes works, but even with these advantages I find myself struggling to find the time between caring and work commitments to participate in this consultation process and complete this submission. Many other carers do not have the advantages that I have and are exhausted, isolated and already stretched. Even experts at reviewing legislation are calling the submission window too short.
The disability community has a principle: nothing about us without us. That principle must extend to family carers, who are often the people with the deepest and most sustained knowledge of what a person with disability actually needs day to day, and what happens when those supports are removed or reduced. We have not been adequately included in this reform process, let alone given enough time to respond to the proposed changes outlined in the legislation.
I urge the Committee to:
- Extend the consultation period to allow family carers and people with disability to engage meaningfully, including through supported and accessible formats;
- Formally include family carers in co-design processes for NDIS reform, recognising the expertise they hold; and
- Commit to genuine, ongoing consultation with the disability community and their families before any further reform measures are progressed.
THE FUNCTIONAL CAPACITY FRAMEWORK DOES NOT REFLECT THE REALITY OF LIVING WITH MULTIPLE DIAGNOSES
As my child’s primary carer, I have an intimate understanding of how their conditions interact. I observe this every day. No standardised assessment tool is likely to capture the impact of their multiple diagnoses. The combination of conditions creates a daily reality that is far more complex and challenging than any single diagnosis would suggest.
On a “bad” day, the interaction between my child’s conditions can make it impossible for them to manage tasks that, on a better day, they can complete with some support. This variability is not an inconsistency or exaggeration. It is the fluctuating nature of the conditions they live with. A single-point-in-time assessment, conducted by someone who does not know my child and relies on a standardised tool or algorithm, cannot reliably capture this.
I am particularly concerned that the proposed framework may assess each diagnosis in isolation, rather than considering the cumulative and intersecting impact of multiple conditions
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on a person’s overall functional capacity. If the National Disability Insurance Agency is only required to consider whether each impairment individually meets the eligibility threshold, then my child, and many people like them, may not be able to gain access to the scheme even though they suffer significant functional impairment.
I am also concerned about the I-CAN assessment tool, which will be used to determine support budgets, and the as-yet-undefined eligibility assessment tool. Neither of these has been finalised. The thresholds, weighting of functional domains, and criteria for determining severity have not been publicly released for consultation. As a carer, I am being asked to comment on legislation that will fundamentally change my child’s access to support, without knowing the details of how that change will actually work.
I urge the Committee to:
- Require the Bill to explicitly mandate consideration of the cumulative and intersecting impact of multiple diagnoses on functional capacity;
- Ensure that assessment tools account for variability and fluctuation in functional capacity over 时间, not just at a single assessment point;
- Require that assessors have access to information from carers and family members as part of any functional capacity assessment, and that this information be given appropriate weight; and
- Delay implementation of new eligibility criteria until the assessment tools are fully developed, independently evaluated, and subject to genuine community consultation.
- THE ALTERNATIVE SUPPORTS ARE NOT THERE AND CARERS WILL FILL THE GAP
The government has stated that people who no longer qualify for the NDIS, or whose budgets are reduced, will be supported through foundational supports and the broader health and community sector. As a parent and a carer, this is frightening and distressing as I know from experience that these alternatives do not exist.
The much talked about foundational supports do not yet exist. What these foundational supports will be and how these will be accessed has not been determined. The current level of funding being talked about for foundational supports are not at a level that could absorb the support needs of the 160,000 people projected to be moved off the NDIS by 2030 and they will not be available before cuts to participation supports begin in October 2026.
The health system is not a substitute for disability support. I have navigated both for years on behalf of my child, and they serve fundamentally different purposes. The health system addresses diagnosis and treatment. The NDIS addresses the functional support needs that remain after treatment: the daily living assistance, community participation, assistive technology, and capacity building that allow a person to function and to have a life. These are not the same thing, and one cannot substitute for the other.
Submission 1453
I would possibly be less concerned about supports being shifted from NDIS to the health system (because that is what will happen - the need doesn’t go away) if we had a properly functioning health system where it was possible to access affordable and timely psychological and allied health support, but this is not the reality.
What I know, and what every family carer knows, is that when formal supports disappear, informal supports expand to fill the gap. That means me. It means more hours of caring, more of my own income spent on supports my child used to receive through the NDIS and my own health, career, relationships, and future plans being compromised. The government’s savings from this legislation will not evaporate. They will be paid for by family carers, primarily women, disproportionately ageing, already providing billions of dollars of unpaid care to the Australian economy.
I am in my 50’s and I am concerned about the future my child will face as I age and am no longer able to provide them with support. The NDIS was part of the plan to support their independence as I age. Removing or reducing that support does not just affect my child now, it removes the pathway to a future where they can live with greater independence and I can, eventually, step back from being their primary carer. That future matters. This legislation puts it at risk.
I urge the Committee to:
- Legislate that no person may be removed from the NDIS or have essential supports reduced until alternative supports are demonstrably available, adequately funded, and operational in their area;
- Conduct and publish an independent assessment of the impact of proposed NDIS reductions on unpaid family carers, including the economic and health consequences;
- Ensure foundational supports are fully operational before any eligibility or budget changes take effect;
- Recognise that savings to the NDIS budget that are absorbed by unpaid family carers are not savings — they are a transfer of cost and harm onto some of Australia’s most vulnerable people.
THE REQUIREMENT TO EXHAUST ALL APPROPRIATE TREATMENTS IS HARMFUL AND UNJUST
As a parent and carer who has been closely involved in my child’s healthcare journey for many years, the requirement that a person must have “undertaken all appropriate treatment” before being eligible for the NDIS is one of the provisions I find most concerning.
Accessing treatment is not simple or automatic. It requires appointments, often with long wait times. It requires transport, which for a person with significant functional impairment may require
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assistance or specialised services. It requires the cognitive and physical capacity to attend and engage with appointments, capacity that is not always available. It requires, frequently, significant out-of-pocket cost. And it requires navigating a healthcare system that is already stretched, that does not always have services available in every location, and that does not always have good answers for complex, multi-diagnosis presentations like those experienced by my child.
My family has over many years pursued diagnoses, engaged with specialists, tried treatments, managed side effects, and continued searching for approaches that might help. We have done this while working, caring, managing our own health and that of other family members. We know what it costs financially, physically, and emotionally.
The requirement to have exhausted “all appropriate treatment”,a term that the Bill does not define with any meaningful precision, places an unacceptable burden on families. It assumes that treatment is accessible and affordable regardless of where someone lives or what their financial circumstances are. It assumes that people have not already tried. And it uses the word “alleviate” in its definition of permanence, meaning that even a small or temporary improvement in one aspect of functioning could potentially be used to argue that a condition is not permanent, and that the person does not qualify.
This is not a safeguard against overuse of the scheme. These proposed changes will exclude people, like my child, with genuine, serious, lifelong disability, particularly those whose conditions are complex, fluctuating, or not well served by currently available treatments.
I urge the Committee to:
- Remove or substantially redraft the treatment exhaustion requirement to ensure it cannot exclude people whose access to treatment has been limited by cost, geography, wait times, or physical capacity to attend;
- Replace “alleviate” in the permanence definition with a higher standard, that treatment is unlikely to produce material and substantial long-term improvement and provide clear legislative guidance on what this means;
- Require that decision-makers take into account the real-world accessibility of treatments, including cost, availability, and the person’s capacity to access and tolerate them; and
- Develop any definition of “appropriate treatment” through genuine co-design with people with disability, their carers, and the medical community.
CONCLUSION
I am writing this submission because I love my child, because I have spent years fighting for their right to be supported, and because I am deeply concerned about this legislation and the direction of disability support in this country.
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I want a sustainable NDIS and I want a scheme that is well-managed, that delivers genuine quality supports, and that is protected from fraud and exploitation. I do not oppose reform that is code-signed with disabled people and their carers. What I oppose is reforms that have not been adequately designed, tested or consulted on and that will, if implemented as proposed, leave vulnerable people, like my child, without the support they need to survive and participate in Australian life.
The NDIS has been life changing for my child and for myself. It has provided stable and reliable supports that has seen them able to gain a level of independence, participate in their community and complete tertiary education. With ongoing support from NDIS, I had been hopeful that my child could enter into sustainable, ongoing employment and continue to achieve a level of independence that would allow me to just be a mother, not a lifelong carer. I fear that if this legislation comes into effect in its current form that this future will no longer be a possibility. My child may not die if they lose access or receive less support through NDIS, as I fear some will, but their quality of life and mine will be negatively impacted.
──────────────────────────────────────────────────────────── Anonymous Family Carer (Parent) | Submission to Senate Community Affairs Legislation Committee | May 2026