National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2442
Senate Submission — NDIS Amendment (Securing the NDIS) Bill 2026
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Family Carer and Advocate Date: 31 May 2026
Introduction
I am writing as the daughter of an NDIS participant and as someone who has spent years helping my family navigate the disability support system.
My mother lives with significant physical disability and complex support needs. She experiences substantial communication difficulties, including aphasia, and requires extensive daily support to live safely and participate in her community. Despite the severity of her disability, our family has spent years fighting to secure the supports she needs through the NDIS.
We are currently involved in Tribunal proceedings because the NDIS has repeatedly sought to reduce or deny supports that independent professional evidence demonstrates are necessary for my mother’s safety, wellbeing and participation. The process has required an enormous amount of time, energy and resources from our family. It has highlighted how difficult it can already be for participants to obtain supports that they genuinely need, even when supported by substantial evidence.
For this reason, I am deeply concerned that the proposed Bill will make the situation worse — not only for my mother, but for thousands of Australians with disability and their families.
The Bill appears to fundamentally shift the focus of the NDIS away from meeting the individual needs of people with disability and towards reducing expenditure and prioritising the financial sustainability of the Scheme. While sustainability is important, it cannot come at the expense of the health, safety, dignity and human rights of people with disability.
Funding Caps Below Assessed Need
One of my greatest concerns is the proposed ability to cap supports below what a participant has been assessed as needing. It is difficult to understand how a support can be considered reasonable and necessary, yet a participant can still be denied funding to access it. For families like mine, this creates the real possibility that people will be assessed as needing support but will be left without the funding required to receive it.
My family’s experience demonstrates why this is so concerning. We are already required to justify and defend every aspect of my mother’s support needs despite extensive evidence from treating professionals and independent experts. The prospect that participants could receive less funding than has been assessed as necessary undermines the purpose of those assessments and risks leaving people without essential supports.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2442
Senate Submission — NDIS Amendment (Securing the NDIS) Bill 2026
The Burden on Informal Carers
I am deeply concerned about the increased reliance on informal supports throughout the Bill. Families are already carrying enormous responsibilities.
I work full-time in a demanding and stressful role while also providing significant care and support to my mother. My responsibilities do not end with advocacy or administration. I assist with many aspects of her daily care and wellbeing, provide emotional support, help her navigate communication barriers arising from her aphasia, attend appointments, coordinate services, communicate with providers and professionals, manage NDIS matters, gather evidence, prepare documents, and advocate for her rights.
The reality is that when my workday ends, another job begins.
Like many family carers, I undertake this work because I love my mother and want her to have the best possible quality of life. However, there are limits to what any family can sustainably provide.
For years, my family has been carrying responsibilities that would be impossible without significant personal sacrifice. The assumption that families can simply absorb additional caring responsibilities does not reflect reality. Informal carers are not an unlimited resource. Many of us are already operating beyond our capacity.
The proposed reforms risk embedding an expectation that families will continue to absorb these gaps regardless of their own employment, health, financial circumstances or caring responsibilities.
Changing Circumstances and the Collapse of Informal Support Networks
These concerns are particularly acute because my father is dying. He has been a critical part of my mother’s support network for many years - they have been married for 46 years. As his health deteriorates, our family’s capacity to provide unpaid care is decreasing at exactly the same time that my mother’s need for support is increasing.
As my father’s health declines, I have increasingly become one of my mother’s primary sources of support. The practical reality is that if formal supports are reduced, delayed or capped, the responsibility will not disappear — it will simply be transferred onto family members who are already stretched to their limits.
Reassessment Rights and Changing Circumstances
The proposed changes to reassessments are especially troubling in this context. The Bill would make it harder for participants to seek changes to their plans when circumstances change. Yet disability does not occur in isolation. People’s lives change. Carers become unwell. Family members die. Housing arrangements change. Support networks collapse. The NDIS must be able to respond quickly and flexibly when these events occur.
If my father’s death results in increased support needs for my mother, I am concerned that the proposed reassessment restrictions could make it harder to obtain timely
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2442
Senate Submission — NDIS Amendment (Securing the NDIS) Bill 2026
adjustments to her plan. Participants should not be forced to wait months for decisions while trying to manage major life crises.
The Whole-Person Approach and Assessment Tools
The proposed removal of the whole-person approach is a significant concern. Disability is complex. People do not experience their impairments in neat, separate categories. My mother’s needs arise from the interaction of multiple challenges and circumstances. A system that attempts to isolate support needs to only those arising directly from a qualifying impairment risks creating arbitrary and unfair outcomes that do not reflect people’s actual lives.
I am also concerned about the proposal to reassess participants against new functional capacity criteria and standardised assessment tools. People with complex disabilities, communication impairments, neurological conditions and fluctuating presentations may not fit neatly within standardised measures. Existing participants should not face the prospect of losing vital supports because a new assessment framework fails to accurately capture their disability.
Review Rights and Access to Justice
The proposed reduction of review rights and the expansion of decisions that cannot be reviewed are particularly concerning given my family’s lived experience. The only reason we have been able to challenge decisions affecting my mother is because independent review mechanisms currently exist. Those safeguards are essential. Participants must have meaningful opportunities to challenge decisions that affect their safety, independence and quality of life.
We are already engaged in a lengthy legal process simply to secure supports that evidence shows are necessary. The proposed changes would further increase the imbalance of power between participants and the NDIA, while reducing opportunities for review and limiting access to supports even where those supports have been assessed as necessary.
Recommendations
In summary, I urge the Committee to recommend:
• That the Bill not proceed in a form that permits funding caps below assessed levels of need — a support cannot be both reasonable and necessary and simultaneously unfunded.
• That the Bill preserve and strengthen, not reduce, participants’ rights to seek unscheduled reassessments when circumstances change, including following the death or illness of a carer or the collapse of an informal support network.
• That the Bill not proceed with provisions that place greater weight on informal supports before formal supports can be funded — the existence of a caring family member must not become a justification for reducing a participant’s entitlements.
• That the whole-of-person assessment approach be retained, recognising that disability is complex and that support needs arise from the interaction of
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2442
Senate Submission — NDIS Amendment (Securing the NDIS) Bill 2026
multiple impairments and circumstances, not from a single qualifying condition in isolation.
• That any new functional capacity assessment tools be validated for people with complex disabilities, communication impairments, neurological conditions and fluctuating presentations before being applied to existing participants.
• That independent review rights be preserved for all decisions affecting a participant’s supports, funding levels and eligibility — these safeguards are essential and must not be removed or curtailed.
• That the Bill not embed assumptions about the capacity of informal carers to absorb additional caring responsibilities, and that any assessment of informal supports account for carers’ employment, health, financial circumstances and existing caring load.
Conclusion
The NDIS was established to provide Australians with disability the supports they need to live with dignity, independence and inclusion. It was not established to transfer increasing responsibility onto exhausted families or to reduce supports through broad funding caps and legislative restrictions.
I urge the Committee to carefully consider the impact these reforms will have on participants with high and complex support needs, on ageing carers, on families experiencing crisis, and on people who already face significant barriers in advocating for themselves.
These reforms have the potential to determine whether a person with significant disability receives the support they need to live safely, whether carers can continue in their role, and whether families already under enormous pressure can continue to cope.
I ask the Committee to ensure that any reforms to the NDIS preserve its core purpose: providing people with disability the supports they need based on their individual circumstances, rather than limiting supports based on broad assumptions about cost, family capacity or system sustainability.
Thank you for considering my submission.
Family Carer and Advocate 31 May 2026
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