Submission 2599 - Supplementary Submission
Supplementary Submission Senate Inquiry NDIS Bill 2026
Shirley Humphris 10/7/26
This supplementary submission is an addition to my first submission (not yet published). It is to focus on high intensity complex needs with risk of death, and the implications of the inherent risk of harm and death from this poorly drafted Bill. The confusing s10 Rules serve as an example of rushed legislation drafting implications and shows government intent, by their current practice, to disregard harm caused. This Bill has very many deeply concerning sections, noted in my earlier submission, and of course by very many experts. There is only one Recommendation that can be made, that is withdraw the Bill and start again.
Potential can of worms for Access. An example of a treatment journey
My grandchild began the NDIS journey as a 1-year-old with global development delay. You know, one of those they plan will be restricted to Thriving Kids. She could not roll over let alone, sit, crawl, stand or walk. But most significantly has multiple seizures daily and along with other complex impairments.
So where would this child have sat in “Thriving” kids now? Likely underfunded and under resourced in States that closed their avenues years ago.
Diagnosis may not “matter” for NDIS access, but it does matter for some treatment options. My grandchild had NDIS access at 1 year old and then had the diagnosis of 2 genetic conditions that happened five years after Access by 6 years old.
Treatments explored have continued over thirteen years, yet none have significantly changed the multiple impairments.
Seventeen antiepileptics have been tried. Many are PBS and work well for some with epilepsy. Some were experimental and part of trials or on compassionate access. One had to have a muscle biopsy before a drug could be given. Other failed treatments were medically ordered supplements, ketogenic diet and cannabis (2 types). Note ketogenic treatment required a year long wait AFTER anti epileptics, to begin under neurology direction.
These treatments are not” try for a week” like an antibiotic but each one may go for months or longer. Then combinations and dose titrations thought may give a different result but mainly did not. It is highly complex of blood work, EEGs charting seizures, and other symptoms.
Then just recently 2026 a new genetic test of which “arm” of the gene is affected, and a new drug may be trialled. So, 13 years after access another treatment could be possible. This could go on for life.
So where would a similar 1 year old be in 2026, having to wait for access until all treatments have been tried?
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Submission 2599 - Supplementary Submission
Remember some treatments tried over the years, work very well for some. This means they would fit the definition of “appropriate treatment” is any treatment regularly undertaken in Australia where public funding is available (e.g., through Medicare, the PBS, or public hospitals).
NDIA “Expert Teams” do not have trust to recommend if in disagreement with the specialist treating team. Will the proposed team have experts of every sub speciality on hand? The legislation is not specific on the treating team’s input to the panel.
“People know my views on how a low bar like “noticeably improves” or marginally alleviates your impairment may see people parked into risk and waiting rooms. And trigger cycles of arguing over marginal treatment or habilitation options that don’t really touch the sides of their lifelong need for disability supports.” Linkedin Dr Darren O’Donovan, Senior Lecturer in Administrative Law at La Trobe.
Recommendation
Nothing in the legislation allows for timing of even years of delay. A time limit on treatment must be an amendment
NDIA “Expert Teams” do not have trust to advise. Will the proposed team have experts of every sub speciality on hand? The legislation is not specific on the treating team’s input to the panel deliberations.
Health or NDIS
Our family are deeply concerned with the potential loose interpretation of health / NDIS responsibility. There is confusion even with tribunal interpretations. This needs to be fixed. We do not believe Minister Butler who said, on several occasions, that no one is falling between 2 stools. He is wrong, there have already been deaths due to the health/ NDIS argument. Noah Johnson and Koa Gibson died this way. Their cases are referenced in my first submission. Of course, many more reside in hospital at greater expense, due to NDIS refusal to support.
The s10 Transitional Rules on Health had many similarities to the Applied Principles and Tables of Support (APTOS) 2015 but with this crucial omission note:
“Note: In applying these principles, consideration will be given to alignment with services funded under the National Health Reform Agreement, with a view to avoiding overlap or gaps.”
It is clear that ART Members have concerns with laws that cannot defer to safety or best interest of a child. These short paragraphs from 2 ART cases describe this difficulty.
Both cases are for a registered nurse (RN) to care for high intensity needs children. The Agency wanted care by a high intensity disability support worker (HISW). Bold added for emphasis.
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Submission 2599 - Supplementary Submission
These cases demonstrate the legal confusion, and that NDIA high level delegates are working with lawyers and barristers to fight for substandard care that risks life. Mark Butler is wrong people are already “falling between two stools.” He has legislated for it. Both NDIS and Health are his portfolio. Hospital costs more to the taxpayer than best care at home. That means “looking good” for NDIS budget savings is the only motivation of the cost shifting. Shame on you.
Case 1 RN provision found to be lawful: KDKJ and National Disability Insurance Agency (NDIS) [2025] ARTA 454 (16 April 2025)
64 I accept RN’s evidence that it would not be appropriate to delegate KDKJ’s care tasks to a HISW. Based on her direct experience in caring for KDKJ and exercising her clinical judgment as a registered nurse, RN considers that the complexity of KDKJ’s health needs, along with the risk of rapid changes that require an immediate response to prevent injury or death, mean that KDKJ’s care tasks are not suitable to be performed by a HISW. I note that, in her first letter, RN considered that it was similarly not appropriate for the care tasks to be performed by an enrolled nurse rather than a registered nurse. I accept that the risk to KDKJ’s safety is high and that it is appropriate to take a cautious approach, giving full consideration to the need to protect KDKJ from harm.
70 In my view, the NDIS Practice Standards are primarily aimed at safeguarding participants in their dealings with registered providers. I do not consider that the standards are intended to, in some way, codify which supports are reasonable and necessary for individual participants. The standards require that some types of care can only be provided by an appropriately qualified HISW. This is not the same question as determining whether funding should be provided for care by a registered nurse or by a HISW under delegation by a registered nurse. The Agency submits that the care being provided to KDKJ by a registered nurse is not reasonable and necessary because this care can be provided by a HISW. This submission unnecessarily conflates the NDIS participant safeguarding and planning frameworks. This is not to say that the standards have no bearing on an assessment of reasonable and necessary supports. The standards will be relevant, particularly when assessing whether a support should be completed by a standard support worker as compared with a high intensity support worker. But the standards do not set out what tasks are appropriate for a HISW to perform as compared with a registered nurse. 82 While a HISW is a comparable support that can be provided at a substantially lower cost, I am not satisfied that a HISW achieves the same outcome as a registered nurse. From the evidence before the Tribunal, I am concerned that the risks to KDKJ’s safety are very high. In giving full consideration to KDKJ’s best interests and the need to protect her from harm, I am not satisfied that the risks to KDKJ are appropriately mitigated by the provision of a HISW.[54] There is no indication that the Agency has given consideration to the best interests of the child in this matter. There is also no indication that the Agency has assessed the risks and safeguards in relation to KDKJ as required by Rule 4.1(c). 83 I am not satisfied that a delegated model with most daily activities being supported by a HISW is a lower cost alternative that achieves the same outcome as support being provided by a registered nurse. While the provision of funding for registered nurses is a more expensive option, given the risk to KDKJ if these supports are not continued, I am satisfied that funding for registered nurse supports represents value for money.[55] In reaching this conclusion, I have also had regard to the principle that people with a disability, and their
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Submission 2599 - Supplementary Submission
families, should have certainty that people with a disability will receive the care and support they need over their lifetime.[56]
Case 2 RN care found to be potentially lifesaving but not lawful
YGBW and Chief Executive Officer of the National Disability Insurance Agency (NDIS) [2025] ARTA 1054 (21 July 2025)
198 In the absence of HIDPA being provided by a registered nurse, 24 hours each day YGBW’s health and her life expectancy is highly likely to be compromised;
That YGBW’s care needs are not routine and cannot be scheduled as contended by Ms Rogerson in her evidence. I am not persuaded by the evidence of Ms Rogerson which I do not consider appreciated the fragility of YGBW’s health and the unpredictable nature and frequency of her rapid decline, including the need for the provision of complex interventions performed urgently.
- Despite my commentary in [198] I am however bound by the statutory requirements of the scheme. The Agency’s contention in relation to section 34(1) of the NDIS Act is confined to the satisfaction of subsection 34(1)(f) of the NDIS Act. The Agency raises no contentions in relation to the remainder of the criteria under section 34(1) of the NDIS Act.
These two cases demonstrate that Members struggle with interpretation of legislation “done in a rush” as were the s10 Rules. If the intention was that Health must supply in home RN care then this MUST have full agreement from States and an easy pathway for the supply of RN care in the home. If there is no firm State agreement, then this interpretation anomaly MUST be fixed and clearly legislated as NDIS support or people will die.
From the existing Rules that determined “delivered or supervised by clinically trained or qualified health practitioners” i.e. the provider can be a trained or qualified health practitioner.
Health (excluding mental health)
7.4 The NDIS will be responsible for supports related to a person’s ongoing functional impairment and that enable the person to undertake activities of daily living, including maintenance supports delivered or supervised by clinically trained or qualified health practitioners where these are directly related to a functional impairment and integrally linked to the care and support a person requires to live in the community and participate in education and employment. National Disability Insurance Scheme (Supports for Participants) Rules 2013.
The s10 Rules have been written differently
Living in ICU is not living in the community!!!
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Submission 2599 - Supplementary Submission
NDIS Deaths
Disability advocate Samantha Connor has commented on the most recent quarterly report
I’ve just unpacked the last NDIS quarterly report.
Deaths are up (6,158 vs 5,631 the year before), but the actuary isn’t treating that as a tragedy that we need to look at or questions we need to ask - it’s treating it as a forecasting input. Higher assumed death rates for the highest-support cohorts if there are 1,237 fewer participants by 2029 then $1.6bn “saved.”
Why would they care if we die?
Meanwhile non-mortality exits nearly doubled (from 7,353 to 14,123), and 83% of them are Agency-initiated eligibility reassessments - not people ‘choosing’ to leave.
Exits are projected to run 23,200-27,300/year for the next three years as the eligibility reassessment ‘backlog’ is cleared. 43,500 people were queued for reassessment at 30 June 2025.
What was that that Minister Mark Butler said on Insiders? ‘Nobody will die.’
Naomi Anderson (Principal Lawyer of Villamanta Disability Legal Services) pointed this out during this Senate Inquiry hearings.
The government’s own modelling says that disabled people will be dying at a higher rate than they were during the start of the pandemic.
Screenshot from a NDIS actuarial report discussing mortality among participants receiving Supported Independent Living (SIL). The text explains that although overall participant deaths are relatively few, mortality among people with the highest support needs significantly affects projected Scheme costs because they are less likely to leave the NDIS for reasons other than death. It states that actual mortality for SIL participants has been higher than projected in the 2024 Financial Sustainability Report (FSR), and that the Scheme Actuary has increased mortality assumptions for higher-support-needs participants in the 2025 FSR. Yet no questions are asked as to reasons for this increased death rate.
Below is a line graph titled “Figure 16: Actual and projected crude mortality rate for SIL participants.” The y-axis shows mortality rates from 0% to 4%, and the x-axis spans 2019 to
- A solid red line labelled “Actual Mortality Exit Rate” rises from about 1.0% in 2019 to approximately 3.7% in 2025. Two projected lines begin in 2026: a dashed blue line labelled “2024 FSR” remains around 2.5% to 2.8%, while a solid dark blue line labelled “2025 FSR” remains around 3.4% to 3.6%, reflecting higher projected mortality than the previous forecast. The figure ends with the text “End of Figure.”
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Submission 2599 - Supplementary Submission
As a PS I would like to express my deep concern at what has now been termed by many as the gaslighting clause in the Interim Report of this Inquiry. Given the quality and calibre of the submissions and testimonies, these comments are uninformed, patronising and insulting.
2.2 “The committee understands that NDIS participants and their loved ones are experiencing real distress regarding their understanding of the proposed changes to the Scheme. A lack of information and context regarding some of the proposed changes has understandably resulted in individuals attempting to fill the gaps themselves, which has led to some confusion and misinterpretation regarding the bill’s intent and impact. Ultimately, this has resulted in misconceptions circulating in the disability community and beyond. Where possible, this chapter seeks to address and clarify these concerns.”
Good grief “real distress regarding their understanding” There is nothing wrong with the community understanding of the Bill, it will cause harm. Thousands insist it is so bad it must be scrapped. ‘Filling gaps … bills intent’ Intentions are not law so rewrite the Bill, without gaps, not the existing blank cheque and pinky promises. There are no misconceptions.
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