National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1315
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: , New South Wales Capacity: NDIS participant (autism, hypermobile Ehlers-Danlos syndrome, dysautonomia, and related multi-system conditions) Date: 28 May 2026
Introduction
I am an NDIS participant in New South Wales. My primary listed disability is autism, but my functional presentation has become substantially more complex over time, now encompassing hypermobile Ehlers-Danlos syndrome (hEDS), dysautonomia with POTS-like symptoms and presyncope, mast cell activation disorder, dystonia, inducible laryngeal obstruction, osteoporosis, and dyspraxia, among other conditions.
I am also a registered psychologist, and I write this submission both as a participant with direct lived experience of the NDIS planning and reassessment process and as a clinician who understands functional capacity assessment in professional practice.
I am not writing to dispute the need for scheme sustainability or to oppose all aspects of the Bill. I am writing because three specific areas of the proposed legislation, when considered against the realities of how the NDIS currently operates for participants with complex and progressive multi-system conditions, raise serious concerns that I believe warrant committee scrutiny before the Bill is passed.
Concern 1: Redefinition of Permanence (Schedule 1)
The Bill proposes that an impairment will not be considered permanent unless a participant has exhausted all appropriate available treatments in Australia.
For participants with conditions such as hEDS, dysautonomia, mast cell activation disorder, and other multi-system connective tissue presentations, this provision presents a significant practical and clinical problem.
These conditions are characterised by the following:
• They are caused by underlying structural, connective tissue, or autonomic nervous system dysfunction that cannot be reversed by any currently available treatment • Management strategies (including physiotherapy, medications, dietary interventions, and pacing) can reduce symptom burden in some domains but do not restore functional capacity • The evidence base for treatment of these conditions is still developing, meaning “all appropriate treatments” is a shifting and undefined standard • Functional capacity in these conditions is inherently variable and can deteriorate despite full compliance with all recommended management
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1315
Requiring a participant to demonstrate exhaustion of all available treatments before permanence is recognised conflates treatability with permanence. These are clinically distinct concepts. A condition can be progressive, lifelong, and genuinely permanent while still being partially manageable. Requiring participants to prove exhaustion of treatment options will create an ongoing and expanding burden of proof that cannot be met for conditions where the biomedical evidence does not support a reversible trajectory.
The practical consequence for participants in my situation is that the permanence threshold becomes functionally unreachable, not because the disability is less real, but because the framing misrepresents how these conditions present and progress clinically.
I submit that the committee should consider whether the permanence definition requires amendment to distinguish between conditions that are potentially reversible through available treatment and those that are permanent in their functional impact regardless of symptom management.
Concern 2: Functional Capacity Framework: The Gap Between Policy Intent and Operational Reality
The Bill establishes a framework for access and planning decisions based on consistent, objective assessment of functional capacity. As stated, this goal is reasonable. In principle, functional capacity should be the basis for NDIS decision-making.
My concern is that the Bill introduces a more rigid and standardised framework into a system that is already failing to use the functional evidence it currently mandates.
I am presently engaged in a Change of Circumstances and Plan Reassessment process. My current plan was due for review in October 2024 and was rolled over without reassessment. It does not reflect my current functional capacity, which has deteriorated substantially, including three emergency department presentations, reduced upright tolerance, significant impact on activities of daily living, and increased safety risk at home.
To support the reassessment, I have obtained clinical evidence including a functional capacity assessment and an occupational therapy report, at considerable personal cost in both financial terms and physical and cognitive energy. In preparing this submission, I am drawing on documented experience of how the evidence and assessment process operates in practice.
The NDIA’s own Chief Executive Officer publicly acknowledged in 2025 that NDIA staff frequently do not have time to read the medical and clinical reports participants are required to submit. This is not a peripheral issue. It is a structural failure at the centre of how functional capacity evidence is currently used, and in many cases not used, in planning decisions.
If a more rigid functional capacity framework is introduced without first addressing the operational failure in how existing evidence is processed and applied, the likely outcome is not more consistent and objective decisions. The likely outcome is a standardised framework applied inconsistently, in the same way the current system already produces substantially different plan outcomes for participants with identical presentations and identical evidence depending on the individual planner.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1315
I submit that the committee should examine what procedural and accountability mechanisms accompany the new functional capacity framework to ensure that assessments are actually read, considered, and applied consistently before that framework becomes the legal basis for access decisions.
Concern 3: Existing Participants with Changing Needs: An Absent Safeguard
The Bill is framed around access, sustainability, and future generations. What it does not adequately address is the situation of existing participants whose needs have changed significantly since their plan was established and who are experiencing systematic failure in the plan review and reassessment process.
My current plan was established in October 2022. It was due for reassessment in October 2024. It was rolled over without reassessment and continues to operate without reflecting my current functional capacity or the substantial deterioration that has occurred in the intervening period. This is not an unusual circumstance. It represents a pattern in the system, one in which participants with increasing complexity are left on outdated plans, unable to access supports that now reflect their actual needs.
The Bill introduces new eligibility thresholds and assessment frameworks, but the structural problem I describe (plans that do not reflect current function because the review process is not occurring as intended) is not addressed by these changes. In some respects, a more rigid access framework may make this problem worse, by creating additional barriers to reassessment for participants whose deterioration is real but whose original plan predates the new functional capacity definitions.
I submit that the committee should consider whether the Bill requires accompanying provisions that explicitly protect the rights of existing participants to timely and substantive plan reassessment when their functional circumstances have changed, and that establish clear obligations on the NDIA to conduct those reassessments rather than rolling plans over.
Conclusion
I support efforts to make the NDIS sustainable, reduce fraud, and improve the quality and consistency of planning decisions. These are legitimate goals.
However, for participants with complex, progressive, and multi-system conditions, the specific provisions I have described carry a real and disproportionate risk of harm, not because those participants are misusing the scheme, but because the scheme as currently administered already struggles to accurately assess and respond to their needs. The Bill, as drafted, risks embedding that failure more deeply through legislative change rather than correcting it.
I ask the committee to consider these concerns carefully and to seek evidence from participants, clinicians, and disability advocates with relevant expertise in complex physical and multi-system presentations before the Bill proceeds.