National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1360
Submission to the Senate Inquiry into the NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT (SECURING THE NDIS FOR FUTURE GENERATIONS) BILL 2026
To the Committee,
- Introduction and Personal Context
I am writing this submission as a current NDIS participant living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a complex, fluctuating neurological condition that affects multiple bodily systems.
I am feeling completely overwhelmed by the scale of the changes proposed in this Bill. The prospect of having vital supports removed is deeply distressing.
Instead of writing an exhaustive analysis of the bill and my concerns, I would like to save my limited energy and respect the Committee’s time by formally endorsing the submission made by the Occupational Therapy Society for Invisible Illness (OTSI) (Submission ID: 790125). Their submission addresses the majority of my systemic concerns and I’m sure other submissions that you receive will examine the bill in more detail and with more wisdom than I am able. Below, I wish to outline the profound personal impact these proposed changes will have on my life.
- Previous Systemic Failure and the Myth of Foundational Supports
Accessing the NDIS initially was a traumatic and difficult process. I first applied in 2019 but was refused access because, according to the NDIA, aged care was more appropriate for me. I was only 41 years old at the time. Unsurprisingly, the local Aged Care Assessment Team (ACAT) refused outright to assess me due to my age and diagnosis.
Because of this experience, I am greatly concerned that giving the NDIA the power to deny access based on the existence, or theoretical existence, of external services will leave many vulnerable people entirely unsupported.
I eventually gained NDIS access a few months after that initial rejection. I fear that the small gains I have made in functional stability because of this support risk being entirely wiped out if I am removed from the scheme. The Government’s promise that “foundational supports” will be fully operational and sufficient before anyone is transitioned off the scheme is profoundly unrealistic. These supports do not yet exist. Furthermore, given the modest funding allocated, they will be vastly insufficient to meet the needs of the 300,000 people the government intends to exclude from the NDIS by 2030, let alone meet the existing unmet need in the community.
Just as the original Productivity Commission underestimated the sheer scale of unmet need for NDIS-level support, this Bill underestimates the prevalence of people who require lower-level support, or who have severe disabilities but cannot meet increasingly rigid NDIS access criteria. Capping foundational supports will turn community care into a rationed service reserved only for the most severely disabled individuals, rather than serving its intended purpose as a safety net for those with less severe, but still highly impactful, disabilities.
- Living with Severe, Fluctuating ME/CFS
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1360
I have lived with this condition for over 30 years. Approximately eight years ago, my illness progressed from “moderate” (where I could mostly manage basic housework and self- care, and leave the house a few times a week) to “severe.”
I am now mostly housebound and bedbound, rely on a complex wheelchair when I leave the home, and require approximately 15 hours of support each week. While I require more support, having workers in my home is physically exhausting, so I intentionally under- utilise my funding to preserve energy. I manage most of my personal care myself, though I can only shower infrequently because it demands too much energy. I fear this will be used as a reason to revoke my NDIS access without taking into account that my current capacity to do this relies entirely on saving energy via funded supports. Losing those supports will cause a total collapse in my ability to manage basic self-care and that will not be recognised by an assessment by a government assessor who doesn’t understand my condition. Given my initial difficulty of gaining access under the current criteria I fear that any tightening of the access criteria will make me ineligible for NDIS support.
- The Flaws of Standardised “Objective” Assessments for PEM
Standardised functional assessments, which government projections describe as “objective,” are fundamentally incapable of measuring my true functional capacity. The most impactful impairment of ME/CFS is Post-Exertional Malaise (PEM), where even minor physical or cognitive exertion results in a severe symptoms lasting days or weeks.
Most people only see the temporary “front” I put on when overexerting myself during a brief appointment or social interaction; they do not see the weeks of severe, bedbound PEM that follow. Standard functional assessments fail for my condition because they do not observe the aftermath. A test that relies solely on observations during a one-hour window cannot detect the cumulative impact of PEM or grasp the reality of total cognitive and physical workload and how every activity I do required a trade off with others not being able to be done.
As this assessment has not been developed or trialled yet it is too soon to be legislative it’s use.
- Permanence Criteria and the “Catch-22” of Treatment Forced Compliance
I am deeply concerned that proposed changes to the permanence criteria, alongside subsequent access reassessments, will allow the NDIA to mandate endless, unproven treatments that will not change the lifelong nature of my disability and may well make it worse.
For people living with ME/CFS, the NDIA frequently mischaracterises “pacing” of activity as a curative treatment. In reality, pacing is an ongoing management strategy that is only attainable if a participant has sufficient support to delegate physical tasks, or equipment like wheelchairs to reduce energy expenditure. Forcing applicants to prove they have “paced” to gain support creates an impossible Catch-22.
Furthermore, if a legitimate biomedical treatment does become available in the future, I am terrified that the legislation will be used to strip away all my existing supports until the treatment is completed. This completely ignores the geographical and financial realities of regional participants. As someone who can only travel within a 10km radius of my home a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1360
few times a year, a treatment would be functionally inaccessible if it required travel, if it were not heavily subsidised on the Pharmaceutical Benefits Scheme (PBS), or if it carried health risks I am not willing to take because they could worsen my situation.
- Managing Fluctuations and the Risk of Shortened Funding Periods
My condition worsens significantly when I am forced to expend large amounts of energy, such as during a medical appointment or a phone call. This exhaustion is cumulative; if I overexert myself before fully recovering, the resulting PEM is significantly worse and longer-lasting. When experiencing severe PEM, I have been forced to temporarily increase my support hours to over 30 hours per week. My current NDIS funding allows for this vital flexibility. External, capped community supports will never be flexible enough to accommodate these sudden fluctuations.
Additionally, the proposed shift to rigid 12 month plan renewals with the NDIA’s choice of 3-month funding periods and the automatic removal away of unspent funds at the end of each 12 month period is deeply unsafe. It fails to account for public holiday pricing variances, unexpected fluctuations in function, respite needs, or the need for labour intensive assessments and reports for equipment or home modifications.
People with disabilities also deserve the flexibility to save funding within their plan to live a full life, such as the ability to increasing hours for a special event or holiday. They shouldn’t have to wait 9 months to do that. Longer plans enable saving funding up over a couple of years for these bitter events. Combining these rigid funding cycles with section 48 restrictions on when plan reassessments can occur and broad Ministerial powers to arbitrarily cut support below “reasonable and necessary” levels creates a distinct risk that I will no longer be able to safely live at home even if I am still an NDIS participant.
- The Vital Role of Capital Expenditure: Modifications and Equipment
I have previously had NDIS-funded modifications made to the front entrance of my home, including a ramp and an automatic opening widened door. These modifications have enabled me to go outside on my verandah where I can lie back in my wheelchair most days and watch the birds. I can also take my dog for a brief ten-minute walk on good days and access a wheelchair taxi to go to the doctor for my annual in person visit so I can continue to qualify for Telehealth Medicare rebates. Before these modifications, when I had to rely on a temporary ramp at the back door, the exertion of just trying to reach the driveway left me entirely exhausted. My mental well-being has also improved significantly because of these modifications.
The same applies to my specialised wheelchair, which requires the more expensive power-tilt and recline features. Without these features, the chair is useless to me, as I can only safely sit upright for 5 to 10 minutes on a good day. As my only income is the Disability Support Pension (DSP), I am unable to fund or co-contribute to these high-cost capital items out of pocket. The NDIS must continue to fully fund these reasonable and necessary supports.
If my support is reduced or removed, my physical condition will rapidly deteriorate. This is likely to be permanent if support isn’t reinstated very quickly. The human impact of removing support must be legally mandated as a consideration in any decision to revoke access and other support must be provided by other services before NDIS support is withdrawn. At best, reducing my funding will result in a severely degraded quality of life
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1360
and vastly increased costs to the state healthcare system; at worst, it will result in life, in the most basic sense, no longer being possible.
- Self-Management and Mandatory Registration
As a self-managed participant, the proposed mandatory registration requirements pose a direct threat to my care. My trusted, long-term sole trader providers—including my therapist, gardener, and cleaner—have already indicated they will withdraw from the NDIS market entirely if forced to undergo a complex, costly registration process, as they only service two or three NDIS clients each.
A “Self-Directed” category must be maintained within the legislative definition of an NDIS Provider. This would allow self-managed participants to directly employ or contract trusted local workers under their own administrative oversight, preventing total provider flight in regional areas and retaining participant choice.
- Administrative Injustice: Claim Refusals and Debt Provisions
The current administrative environment has caused me immense anxiety. The NDIA can simply refuse to pay a claim after the service has been delivered, even when it is a legitimate, allowed support. Because a claims refusal is not a reviewable decision, participants are frequently left personally out-of-pocket or facing massive debts to small businesses.
Similarly, the current debt provisions in the Act offer no recourse for a participant to contest the validity or fairness of an alleged debt; one can only ask for it to be waived. This is deeply unjust for participants who are trying to do the right thing.
Conclusion
This Bill, in its current form, places financial targets ahead of human safety and functional dignity. I urge the Committee to amend the Bill to protect the rights, health, and autonomy of participants living with complex, fluctuating lifelong conditions.
Thank you for considering my submission.
Note: This may be published without my name
I have used AI to assist to grammar and spelling, to reorganise my text for readers’ benefit, It is all my own opinion and has been thoroughly checked and re-edited after AI was used.