National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 945
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill Submitted by: An NDIS Participant (Victoria) May 2026
- Introduction
I am an NDIS participant living in Victoria. I have been on the NDIS for over five years, and I am submitting this submission as an individual sharing my personal experience of the Scheme.
I live with schizoaffective disorder, including bipolar disorder type 1. My condition involves depression, mania, hypomania, anxiety, psychosis, paranoia, memory and cognitive difficulties, communication differences, fatigue, low motivation, and significant challenges with daily self-care and organisation.
I am making this submission because I am genuinely frightened by what the proposed amendments to the NDIS Act could mean for my life. I want the Committee to understand — through my own experience — why this Scheme is not a luxury or an indulgence. It is the reason I am alive, stable, and living in my community. I ask that the Committee read this submission with that weight in mind.
- What the NDIS Has Made Possible
Before I was on the NDIS, I was hospitalised multiple times each year — sometimes for weeks, sometimes for months at a time. I was extremely unwell, unable to maintain basic daily functioning, and cycling in and out of crisis. I could not reliably manage my own home, personal care, appointments, or safety.
Since accessing the NDIS, I have not been hospitalised. That is not a small achievement — it is the central fact of my life as a participant. The supports I receive allow me to:
• Keep my home orderly and liveable, with the help of a cleaner and gardener • Maintain personal hygiene and self-care with the support of disability support workers • Safely attend medical and therapeutic appointments using my transport budget on days when my symptoms prevent me from driving • Receive regular psychology and occupational therapy to manage my mental health and build daily living skills • Eat properly through meal preparation and delivery support
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 945
• Access social and community activities that connect me to the world outside my home • Take planned breaks through respite arrangements when my condition is particularly challenging Together, these supports allow me to live independently in my community. Without them, I could not function safely or sustainably.
- Social and Community Participation Funding Must Be Protected
I am deeply concerned by proposals that would restrict or reduce funding for social and community participation. For many people without disability, this category might sound like a “nice to have.” For me, it is not.
My condition causes significant social withdrawal, paranoia, and isolation. Left without structured support to engage with the community, I do not leave the house. I miss medical appointments. I become more unwell. The risk of relapse and hospitalisation increases substantially.
Social participation is not recreation for me — it is part of my treatment and my stability.
If this funding were cut or restricted, the consequences would be serious and direct: more isolation, declining mental health, increased risk of psychiatric crisis, and ultimately, greater cost to the health system through hospitalisation. The Committee should understand that restricting community participation funding for people with psychosocial disability is a false economy.
- Changes to “Reasonable and Necessary” Must Not Harm People with Psychosocial Disability
I am concerned about proposed changes to the definition and application of “reasonable and necessary” supports. The current framework, while imperfect, allows for a degree of flexibility that reflects the reality of living with a condition like mine — one that fluctuates, responds unpredictably to treatment, and manifests differently from day to day.
Any narrowing of this definition that fails to account for the episodic and fluctuating nature of psychosocial disability risks leaving people without support precisely when they need it most. A good day does not mean a person is well. A stable period does not mean a person’s disability has resolved. I ask the Committee to ensure that any amendments preserve flexibility for people whose support needs are not static.
- Greater Expectations on Families and Unpaid Carers Would Be Devastating
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 945
The Bill raises concerns that families and unpaid carers may be expected to take on more responsibility before or instead of NDIS support. I want to be very direct about what this would mean in my situation.
My parents are both in their eighties. They love me and they worry about me. But they are elderly and have their own health challenges. They are not able to take on the role of my support workers, cleaners, carers, or transport providers. If my NDIS supports were reduced and the expectation was that my family would fill the gap, they would be overwhelmed. They could not cope. And the likely outcome is that I would deteriorate — and that we would all end up in crisis together.
It concerns me deeply that the framing of “informal supports” in the Bill may lead decision-makers to assume that having family nearby equals having adequate support. In my case, and in many others, that assumption is wrong. The existence of elderly or otherwise limited family members is not a substitute for funded, professional, consistent disability support.
I do not want to be a burden on my ageing parents. The NDIS is what allows me to protect them from that.
- Requiring People to Try “All Appropriate Treatments” First Is Harmful
I understand the policy intent behind requiring participants to try other treatments before accessing certain NDIS supports. But this requirement, as applied to people with complex and treatment-resistant conditions like mine, is both unrealistic and potentially dangerous.
Over the course of my illness, I have tried many things: multiple medications, electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS), various forms of therapy, and more. My condition has not resolved. It is managed — imperfectly, daily — with the combination of professional treatment and NDIS support working together.
Requiring people in my situation to demonstrate that they have exhausted all appropriate treatments before accessing support creates unnecessary gatekeeping and delays. It also misunderstands how psychosocial disability works. Supports like personal care, meal preparation, and community access are not alternatives to treatment — they are what allow a person to survive and function while receiving treatment.
I ask the Committee to recommend that this requirement be applied with significant caution, with clear exemptions for people with complex, treatment-resistant, or episodic conditions.
- NDIS Supports Should Not Be Deferred to Inadequate Alternative Systems
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 945
I am concerned about provisions that would require participants to access other government schemes before the NDIS. In principle, there is logic to this. In practice, it risks pushing people with disability into systems that are not designed for their needs, are chronically underfunded, and have long waitlists.
For people with complex psychosocial disability, the mainstream mental health system — while valuable — cannot replicate what the NDIS provides. Community mental health services are stretched. They do not provide personal care, household support, transport, or community access. Directing NDIS participants to these systems as a first port of call will not meet our needs. It will simply delay and defer the support that we actually require.
- Automated Decision-Making Is Not Appropriate for Complex Disability
I am alarmed by the prospect of automated or algorithm-driven decision-making being used to determine NDIS plans and supports. My disability is complex, fluctuating, and deeply individual. The support I need cannot be determined by a formula.
Schizoaffective disorder does not present the same way in any two people, or even in the same person from one period to the next. Good planning requires human judgement, contextual understanding, and the ability to hear what a participant is actually saying about their life. An automated system cannot do this.
I fear that automated decisions will strip the common sense out of the planning process — producing outcomes that look logical on paper but are disconnected from the reality of a person’s daily life. For people with psychosocial disability especially, this could be actively dangerous.
I ask the Committee to recommend that automated decision-making tools never be used as the final or sole determinant of a participant’s plan, and that meaningful human review always be available.
- Plan Reassessments Must Be Handled with Greater Care and Notice
Plan reassessments are one of my greatest sources of anxiety as a participant. I have experienced reassessments that came with little or no notice, at times when I was not prepared to advocate for myself, and which resulted in reductions to my supports.
For someone with my condition — where stress, unpredictability, and cognitive load are significant triggers — an unannounced or poorly managed reassessment is not just stressful. It is a clinical risk. The process of defending my supports, gathering evidence, and managing bureaucratic complexity at short notice is exactly the kind of challenge my disability makes hardest.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 945
I am concerned that the Bill may make reassessments more frequent, more rigid, or more susceptible to support reductions without adequate safeguards. I ask the Committee to recommend:
• Adequate written notice of any plan reassessment, with sufficient time to prepare • The right to have a support person or advocate present • Clear and transparent reasoning for any proposed reduction in supports • A meaningful review pathway that does not require participants to go to the AAT as a first resort • Protections against reductions during reassessment unless there is clear evidence that supports are no longer needed
- Forced Changes to Plan Managers and Providers Would Disrupt Care
I am concerned about changes that could force participants to switch plan managers or providers. My current arrangements work. I have relationships with providers who understand my condition, know my history, and can communicate with me in ways that suit my needs.
For people with psychosocial disability, continuity of relationship is not a preference — it is a clinical necessity. Trust takes time to build. Disrupting established provider relationships in the name of market efficiency or cost management could cause real harm to participants like me.
I ask the Committee to ensure that any changes in this area are genuinely voluntary and that participants retain meaningful choice and control over who provides their supports.
- What I Want the Committee to Understand
I want to say something plainly: the NDIS saved my life. Not metaphorically — concretely. Before I had these supports, I was in and out of hospital, unable to care for myself, and at serious risk. Since accessing the Scheme, I have been stable, independent, and out of hospital.
The proposed amendments, taken together, feel like a dismantling of the things that make the NDIS work for people like me. Reducing community participation, narrowing definitions of support, increasing the burden on families, introducing automated decisions, and tightening reassessments — each of these changes carries a human cost that may not be visible in a cost-benefit spreadsheet but is very real in a person’s life.
I ask the Committee to remember that the people who will be most affected by these changes are often those least able to fight back against them — people who are
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 945
unwell, isolated, exhausted by their own conditions, and heavily reliant on the systems that are now being restructured.
- Recommendations
Based on my lived experience, I respectfully ask the Committee to recommend:
• That social and community participation funding be explicitly protected and not subject to blanket restrictions for people with psychosocial disability • That any changes to the definition of “reasonable and necessary” preserve flexibility for people with episodic and fluctuating conditions • That the Bill not increase expectations on informal carers or family members without robust safeguards and individual assessment • That the requirement to try “all appropriate treatments” be applied with clear exemptions for people with complex or treatment-resistant conditions • That referral to other government schemes not be used to defer or deny NDIS supports that those schemes cannot meaningfully provide • That automated decision-making never be used as the sole or final determinant of a participant’s plan, with human review always available • That plan reassessment processes include adequate notice, advocacy support, transparent reasoning, and strong protections against unjustified reductions • That forced changes to plan managers or providers be prohibited, and that participants retain genuine choice and control
- Conclusion
I have written this submission because I believe my experience matters, and because I know that many people in situations like mine do not have the capacity or confidence to speak up. I am speaking up for them as well as for myself.
The NDIS, at its best, is a Scheme that sees disabled people as full human beings with the right to live, participate, and be safe in their communities. I ask the Committee to protect that vision — not to erode it in the name of sustainability.
Sustainability matters. But so does the fact that I have not been in hospital since I accessed these supports. So does the fact that my elderly parents are not crushed under the weight of caring for me alone. So does the fact that I can live in my own home, in my community, with dignity.
Please do not take that away.
Submitted anonymously by an NDIS Participant, Victoria May 2026