Submission 2596
Submission to the Senate Community Affairs Legislation Committee
Inquiry
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Dear Committee Members
A Question
I am concerned about the consequences, both unintentional and intentional, of the proposed changes to the NDIS legislation and the future we are creating for ourselves, our children, and grandchildren. Do we want a future where everyone belongs, everyone is valued and enabled to participate and contribute, or a future that moves us back to the past, where some people carry stigma, are perceived as a burden, framed as a cost to society, and are increasingly segregated? Unfortunately, much of the narrative surrounding the recent NDIS discussion and some of the bill’s content point towards the latter.
I have a heartfelt question for those considering changes to the legislation: What vision of the future for Australian Society is guiding your decisions regarding amendments to the NDIS Act?
My Background
This submission is a heartfelt response from a concerned community member who lives in close proximity to disability and is concerned for not only our son and many friends with disability, but also for the future of our society. Communities are richer when people with disability are fully present, living ordinary lives, and contributing their unique gifts to the rich tapestry of Australian life.
This concern is extended to those who are not yet disabled, as disability is a minority group that anyone can join at any time.
Overview of Concerns
The stated intent of the amendment to the Act is to secure the NDIS for future generations. I am wondering, however, which form of the NDIS will be preserved, as the proposed changes to the legislation seismically shift some of the foundational principles that underpin its original intent. The shift is away from a focus on the individual exercising choice and control over their own life, towards an emphasis on economics and increasingly bureaucratic systems. The proposed regulatory changes miss the mark and do not necessarily protect people from neglect and abuse. They move towards congregated services offering ‘one size fits all’ options.
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Submission 2596
The concept of reasonable and necessary support tailored to individual need has underpinned the NDIS, and this support has made an enormous difference to the lives of individuals and families. This is now under threat, and I am worried about the future of the scheme, which risks losing some of its world-leading distinctives and morphing into something removed from its original intent. It is not too late to reconsider and make some changes to the proposed amendments.
Many recommendations regarding the proposed review of the Act have been made by others more proficient than me during the Senate submission process, and I humbly request that you carefully consider them, bearing in mind the potential negative outcomes if the NDIS Amendment 2026 proceeds in its present form.
In principle, I support the ongoing development of the NDIS Act and the intent to safeguard the sustainability for future generations.
I am concerned, however, that some of the proposed changes are problematic and will lead to negative outcomes for Australians with disability.
Some of these concerns are:
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Changes to legislation potentially change the original intent and values underlying the NDIS Scheme.
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The proposed changes miss the mark and will not address the identified problems.
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The narratives around the NDIS and the official reasons for the changes are changing perspectives around disability in the community and implying that participants are a burden to society. This is happening to the extent that “on the NDIS” is emerging as a new slur, intimating it is a shameful thing to be.
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The changes will make the lives of people with disabilities and their families more difficult. The proposed reduction in the number of participants in the Scheme means many people may fall through the gaps between the (not yet existing) foundational supports and the NDIS. These people will be under supported or miss out on necessary support altogether.
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Continual changes to the NDIS are causing distress, uncertainty, increasing stress, and making it impossible for people to plan for their future with any certainty. This is particularly a concern for aging parents who may work hard to plan a good life with their son or daughter, only to have the NDIS plan change and upend the support arrangements and daily routine. It is an enormous (keeping us awake at night) worry to know that this may happen after we pass away, leaving our loved ones with an uncertain future without us there to advocate for them and seek out alternative supports.
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Submission 2596
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The proposed reassessments of participants, compounded by the reduced opportunity for review, and the increasing use of automated decision making, are not only stress inducing, but will have questionable validity given the unique circumstances and consequences of disability for the life of each individual person.
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Related to the point above, assessments that focus on one aspect of disability at a time ignore the compounding impact of multiple conditions, environmental barriers and fluctuating complexities that are often components of life with disability.1
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Community Participation is not an optional extra but essential for people who cannot access the community alone to attend work, training, medical and other appointments, do their shopping, volunteer, vote or attend to other civic responsibilities, practice their faith, or connect with their friends and families. People with disability have the right to live ordinary lives, be fully present in society, and contribute to their communities in a variety of ways that benefit everyone.
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Changes in funding levels allocated to individuals (particularly the cut in community participation support) will result in people with disability and/or their family carers reducing their work hours or leaving the workforce altogether.
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Many people require support regardless of location, and it is surely better to be supported to be present in society, active, and contributing to the community than supported to sit at home. Community participation increases wellbeing, improves mental health, and enables social connection. Social participation fosters the development of friendships, and being known in the community safeguards individuals.
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It is concerning that the minister (of the Government of the day) will have the power to cut funding at his or her discretion to certain groups of people or categories of support. This removes an important safeguard and concentrates power over NDIS funding decisions in the hands of one person. It allows for unacceptable outcomes, especially given that governing parties, ministers, and their political orientations change over time.
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1 For example, our family member has intellectual disability, a combination of complex health conditions, a structural heart defect, fluctuating mobility, primary immune deficiency, extreme fatigue, ongoing pain, seizures, osteoporosis, anaphylaxis, and poor vision. If his accepted disability for access to the NDIS is intellectual disability, we are concerned that the compounding influence of each of these on the others will not be adequately considered when formulating his plan. Due to his intellectual disability, for example, he needs extensive support to manage the other complex aspects of his life, including numerous specialist appointments and regular infusions. Sometimes he uses a wheelchair due to fatigue, pain, balance, and mobility issues, but his physical disability may not be considered when formulating his support plan. Similarly, the impact of his complex health or vision impairment on his functional capacity may not be adequately considered during any assessment processes.
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Submission 2596
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Support needs do not disappear with the reduction of funding, and the costs and consequences just get shifted elsewhere. Insufficient support will increase the responsibilities of family carers, hospitals, the justice system, schools, and emergency services.
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The attempts to address financial sustainability through these amendments are primarily directed at reducing the support provided to individuals, and removing people from the Scheme, rather than concentrating elsewhere in the burgeoning bureaucracies that are the NDIS/NDIA or the expensive appeals system. In my opinion, they do not accurately target fraud or address the financial mismanagement in some organisations. Paradoxically, the best organisations are the ones that may struggle most financially, as they provide the best person-centred support, invest in their staff, do not cut corners, put in many hours of unbillable work, and operate on minimal profit margins.
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People with disability and their families are not being consulted in a meaningful way about legislative changes and development of the Scheme despite being the experts in their own lives and having valuable firsthand experience and real-life suggestions that can address identified problems with the scheme.
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Valid co-design is vital for the health and sustainability of the scheme. Valid Co- design is a process of listening carefully and involving disabled people in all aspects of planning and development. It includes meaningful engagement when developing legislation, and including stakeholders in future planning, design, and development from the ground up, not simply requesting feedback on predetermined suggestions
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The proposal that all treatment options be exhausted before acceptance onto the scheme is a serious flaw. There is a moral dimension to this, as treatments are not equally available to everyone but depend on location, finances, and other factors that may contraindicate a particular treatment. It also removes choice, pressuring people to try treatments with uncertain outcomes, unproven results or potentially serious side effects.
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The suggestion that insurance payouts or other schemes exclude people from the NDIS is also a potential flaw. A past (or future) insurance payout may be spent on necessary home modifications, leaving nothing for ongoing support. The cost of support and level of need may also have changed since the original payment determination or may change in the future due to the compounding effects of disability over time. This amendment needs to be considered carefully, with guidelines put into place so that people are not disadvantaged or precluded from the support they require.
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Submission 2596
Conclusion
Time has precluded preparation of an in-depth submission, but I am aware that others have provided more comprehensive submissions and I respectfully request that you give them due consideration.
I agree that there are flaws in the NDIS Act, and the implementation of the Scheme that need to be addressed, but please think long and hard about both the intended and unintended consequences of the proposed amendments in their present form.
I thank you for taking the time to read my submission and leave you with my original question:
Do we want a future where everyone belongs, everyone is valued and enabled to participate and contribute, or a future that moves us back to the past, where some people carry stigma, are perceived as a burden, framed as a cost to society, and are increasingly segregated?
What vision of the future for Australian Society is guiding your decisions regarding amendments to the NDIS Act?
Yours sincerely
(Name Withheld) BSSc, MTh, MDiv.
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