Submission 1693

Profound Autism Network

Profound Autism Network SUBMISSION TO THE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1693

Profound Autism Network

Contents

• EXECUTIVE SUMMARY

• 1. INTRODUCTION AND STANDING

• 2. THE DISTINCT COHORT: LEVEL 3 AUTISM (SEVERE AND PROFOUND IMPAIRMENTS)

• 3. CORONIAL AND JUDICIAL EVIDENCE: PREVENTABLE DEATHS AND SYSTEMIC FAILURE

• 4. NDIS-RELATED CORONIAL FINDINGS: SYSTEMIC FAILURES ACROSS THE SCHEME (2014 TO 2026)
• 5. RISK TRIAGE AND ESCALATION: THE INADEQUACY OF THE NDIA’S CURRENT FRAMEWORK
• 6. GENERALISABILITY AND TRANSFERABILITY TO OTHER SEVERE AND PROFOUND DISABILITIES

• 7. INDEPENDENT RESEARCH ADVISORY COUNCIL FOR EVIDENCE GOVERNANCE

• 7. THE BILL’S EVIDENCE HIERARCHY AND EXTERNAL VALIDITY FOR LEVEL 3 COHORTS

• 8. HUMAN RIGHTS AND LEGAL OBLIGATIONS
• 9. ANALYSIS OF KEY BILL PROVISIONS: IMPLICATIONS FOR PARTICIPANTS WITH PROFOUND DISABILITY
• 12. CONCLUSION

REFERENCES ……………………………………………………………………………………………………………………………………………… 72

APPENDIX …………………………………………………………………………………………………………………………………………………….. 77

Submission 1693

Profound Autism Network

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by: The Profound Autism Network Inquiry: Senate Community Affairs Legislation Committee Report submitted: 1 June 2026

EXECUTIVE SUMMARY

Standing and Basis of Submission

  The Profound Autism Network is a national systemic advocacy organisation representing families and carers of children with DSM-5 Level 3 autism spectrum disorder with severe and profound levels of impairment. Its members include primary carers of non-verbal, minimally verbal, non-speaking or no functional communication children who require constant one-to-one or two-to-one supervision, specialist behaviour support, regulated environments, and clinical oversight to remain safe.

The Network makes this submission on the basis of direct lived experience of families navigating the Scheme; a systematic review of coronial findings across all Australian jurisdictions to May 2026, identifying 104 cases in which autism was a confirmed or strongly suspected diagnosis of the deceased and 230 cases in which the NDIS was a material factor in the circumstances of death (coronial.com.au, 2026); relevant Federal Court and Administrative Review Tribunal jurisprudence affirming the obligations of the National Disability Insurance Agency; and Australia’s obligations under the Convention on the Rights of Persons with Disabilities (United Nations, 2006).

  The submission is directed to a cohort whose characteristics can be identified with precision. Participants with Level 3 Autism under DSM-5 criteria present with severe communication deficits, most being non-verbal or minimally verbal; profound absence of safety awareness; high-risk elopement, water-seeking, climbing, self-injurious, and pica behaviours; and a complete or near-complete dependence on others for survival, safety, and daily function (American Psychiatric Association, 2013). The same risk profile applies to other participants with severe and profound impairment, including those with profound intellectual disability, severe cerebral palsy with complex communication needs, requiring 24/7 life sustaining supports and equivalent presentations across multiple diagnostic categories.

All recommendations in this submission are directed to that functional profile, not to a diagnostic label alone.

The Bill’s Legitimate Objectives and the Central Question

Submission 1693

Profound Autism Network

The Bill pursues two legitimate public interests: restoring the financial sustainability of the

National Disability Insurance Scheme and strengthening measures to protect its integrity against

fraud. The Network acknowledges both. The long-term viability of the Scheme is essential to its

purpose of serving future generations of Australians with disability. No submission directed at the

rights of people with the most complex needs is well-served by ignoring the real pressures of scheme

eustainability.

  The central question for the Committee is not whether those objectives are legitimate. It is

whether the mechanisms chosen to achieve them contain adequate safeguards against arbitrary, inequitable, or clinically unsound exclusion of participants with the most profound and permanent support needs, and whether the Bill, as currently drafted, places current and future participants at a foreseeable and preventable risk of serious harm or death.

  The submission answers both questions in the negative. The Bill as drafted does not contain

adequate safeguards for this cohort. Its provisions, taken together, will foreseeably operate to reduce, delay, or deny the intensity of support that the coronial record demonstrates is necessary to prevent death, family collapse, and preventable harm for children and adults with Level 3 Autism and equivalent and profound disability.

The Evidentiary Foundation

The submission is grounded in three independent bodies of evidence, each addressed in

detail in the sections that follow.

  The first is the coronial record. A systematic review of findings across all Australian

jurisdictions has identified 104 cases in which autism was a confirmed or strongly suspected diagnosis of the deceased and 230 cases in which NDIS-related factors were identified as material (coronial.com.au, 2026). The dominant themes are drowning following elopement, choking and aspiration, suicide and self-harm in inadequately supported individuals, medical diagnostic failure attributable to communication barriers, and deaths in NDIS-funded settings where supervision, documentation, and inter-agency coordination were identified as deficient. Coroners have documented the deaths of children including Riley Christopher Shortland, Alex Jeremy Raichman, Aluel Ajak, Airlie Montgomery, Essa Dennaoui, and Gurshabad Singh, in circumstances where the absence of adequate supervision, environmental safeguards, and funded support was identified as a direct contributing factor. These cases are not isolated administrative failures. They are the

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predictable consequence of a system that has not drawn an adequate boundary between cohorts with materially different risk profiles and support needs.

The second is the external validity literature. Minimally verbal autistic children, who represent approximately 25 to 30 per cent of the autistic population, appear in as little as approximately 2 per cent of autism research samples (Tager-Flusberg & Kasari, 2013; Russell et al., 2019). The most complex presentations are systematically excluded from the intervention trials from which the Bill’s proposed evidence hierarchy draws its force (Sandbank et al., 2020). That exclusion is a structural feature of research design, not a reflection of clinical need. A statutory framework that elevates research generated from such samples to greatest weight, without requiring any demonstration that the research speaks to the circumstances of the participant before the decision-maker, does not advance evidence-based practice. It entrenches research-referenced inequity for the cohort with the highest support needs.

The third is the lived experience of families and carers, supported by Administrative Review Tribunal and Federal Court proceedings that have documented, in detail, the consequences of under-support: family collapse, carer breakdown, economic devastation, adversarial and exhausting review processes, and in the most serious cases, preventable death.

The Bill’s Key Risks for this Cohort

The submission identifies five structural risks in the Bill’s provisions that require legislative correction.

The evidence hierarchy established by the Bill gives statutory primacy to published, peer- reviewed, and generalisable research in determining whether supports are effective and beneficial. For participants with Level 3 Autism and equivalent profound disability, that hierarchy will foreseeably elevate research that does not represent their circumstances to determinative weight in decisions about their access to life-preserving supports. It creates a one-sided risk calculus oriented toward constraining what may be funded, with no corresponding obligation to assess and document the risk of harm from support set at too low a level.

The functional capacity assessment framework, including the statutory definition in proposed section 9B and the rules to be made under section 9B(3), will produce inconsistent and clinically inaccurate outcomes for this cohort unless it includes specific criteria for non-verbal, profoundly impaired, and high-risk participants, and unless it requires the compounding effect of multiple impairments to be assessed as a whole rather than in isolation.

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The tightening of the permanence test and the “all appropriate treatment” requirement risks imposing an impossible and clinically unsound burden on families of children with lifelong neurodevelopmental conditions for which there is no cure. It will delay or deny access to lifelong supports for children who demonstrably require them.

The eligibility provisions relating to other service systems will, in the absence of an explicit statutory carve-out, foreseeably result in children with Level 3 Autism and equivalent profound disability being diverted to mainstream education, health, and community service systems that do not have the legal authority, clinical infrastructure, or staffing capacity to meet their needs safely.

The automated decision-making framework in Schedule 3 is not appropriate for cases where the consequences of error include serious harm or death, and where accurate decision-making requires consideration of clinical evidence, behaviour support plans, family circumstances, and coronial findings that cannot be reduced to the inputs of an automated system.

The Coronial Record as Constitutional Notice

The coronial record, taken as a whole, constitutes clear and repeated notice to the Commonwealth of the specific risks faced by autistic individuals with severe and profound support needs: risks that the National Disability Insurance Scheme was established to mitigate. Where the State has knowledge of those risks, derived from the findings of its own coronial jurisdiction, and proceeds to entrench a funding framework incapable of addressing them, the positive obligation to protect life under Article 6 of the International Covenant on Civil and Political Rights (United Nations, 1966) and Article 10 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006) is directly engaged.

It is unnecessary to attribute improper motive to reach this conclusion. A scheme may produce unjust and unsafe outcomes through design deficiency, institutional inertia, and inadequate attention to the circumstances of the most vulnerable cohort. The question for the Committee is whether the Bill as drafted takes reasonable steps to protect life for this cohort, and whether the amendments proposed in this submission are necessary to ensure that it does.

The submission answers both questions affirmatively.

Priority Recommendations

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The Committee is asked to recommend all amendments set out in this submission. The following are identified as matters of priority, on the ground that they address the most direct and immediate structural risks of preventable harm.

• First, the insertion of a statutory evidence hierarchy carve-out giving primary weight to individualised clinical and functional evidence for participants with Level 3 Autism and equivalent severe and profound level of disability, high-risk profiles, where the generalisable research base does not represent their circumstances.

• Secondly, the insertion of a provision prohibiting the reduction of funded supports below the level required to maintain the safety of a participant with Level 3 Autism and equivalent severe and profound level of disability, high-risk profiles, where a treating clinician has assessed that level as clinically necessary.

• Thirdly, the prohibition of automated decision-making as the sole determinant of access, plan value, or support type for participants with Level 3 Autism and equivalent severe and profound level of disability, high-risk profiles, with a requirement for specialist human review before any such decision takes effect.

• Fourthly, the insertion of a human rights paramount consideration provision requiring the CEO and the Agency to give primary consideration to Australia’s obligations under the Convention on the Rights of Persons with Disabilities (United Nations, 2006) in all exercises of discretion under the Act, and to treat the best interests of participants with profound disability as a primary consideration in all decisions affecting them.

• Fifthly, the statutory recognition of carer sustainability as a core object of the Act, with a corresponding obligation to respond immediately when a carer’s capacity to provide safe care reaches the point of clinical contraindication.

The Standard Against Which the Bill Should Be Assessed

The National Disability Insurance Scheme Act 2013 (Cth) was established to give effect to the principle that people with significant and permanent disability are entitled to the supports they need to live with dignity, safety, and full participation in the life of their communities. The effectiveness of the Scheme cannot be measured only by aggregate expenditure or participant numbers. It must be measured by whether participants with the most complex needs can obtain supports without unreasonable delay, understand the basis of decisions affecting them, exercise review rights in a

Submission 1693

Profound Autism Network

manner that is practical rather than merely theoretical, and live without a foreseeable and preventable risk of death arising from inadequate funded support.

  The amendments proposed in this submission are directed at that standard. They are

specific, practical, and proportionate. They do not undermine the Bill’s legitimate sustainability objectives. They ensure that those objectives are pursued in a manner compatible with Australia’s human rights obligations and with the founding purpose of the Scheme.

Profound Autism Network Submission to the Senate Community Affairs Legislation Committee 1 June 2026

1. INTRODUCTION AND STANDING

  The Profound Autism Network is a national systemic advocacy organisation representing

families and carers of children with DSM-5 Level 3 Autism Spectrum Disorder with severe and profound levels of impairments. Its members include primary carers of non-verbal children who require constant one-to-one or two-to-one supervision, specialist behaviour support, regulated environments, and clinical oversight to remain safe. The Network makes this submission in the public interest. It draws upon the direct lived experience of families navigating the Scheme; a systematic review of coronial findings across all Australian jurisdictions to May 2026, identifying 104 cases in which autism was a confirmed or strongly suspected diagnosis of the deceased and 230 cases in which NDIS-related factors were identified as material to the circumstances of death; Federal Court and Administrative Review Tribunal decisions affirming the obligations of the National Disability Insurance Agency (NDIA); Australia’s obligations under the Convention on the Rights of Persons with Disabilities (United Nations, 2006); the objects and principles of the National Disability Insurance Scheme Act 2013 (Cth) as proposed to be amended; and human rights jurisprudence concerning positive obligations to protect life and prevent neglect.

  The Network's standing rests on its direct representational relationship with affected families

and on its sustained engagement with the coronial, judicial and administrative record. That record, set out in the sections that follow, constitutes clear and repeated notice to the Commonwealth of the specific risks faced by participants with Level 3 Autism and equivalent severe and profound impairment when the intensity of funded support is inadequate or withdrawn.

  The submission identifies five structural risks in the Bill's provisions, each addressed in the

detailed analysis that follows. In summary, those risks arise from the proposed evidence hierarchy,

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Profound Autism Network

the functional capacity assessment framework, the tightening of permanence and other service

system provisions, the eligibility diversion provisions, and the automated decision-making framework

in Schedule 3. The Committee is asked to recommend the amendments specified in this submission,

which are directed at ensuring that the Bill’s legitimate sustainability objectives are pursued in a

manner compatible with Australia’s human rights obligations and with the founding purpose of the

Scheme.

2. THE DISTINCT COHORT: LEVEL 3 AUTISM (SEVERE AND PROFOUND IMPAIRMENTS)

Clinical Definition

   Level 3 Autism, as defined in the Diagnostic and Statistical Manual of Mental Disorders (5th

ed.; DSM-5; American Psychiatric Association, 2013), represents the most severe end of the autism

spectrum and is defined as requiring very substantial support. Participants in this category present

with severe communication deficits, most being non-verbal and relying on augmentative and

alternative communication if at all; profound difficulty with change and transitions, resulting in

extreme distress at minor unpredictability; highly restricted and repetitive behaviours that interfere

with daily functioning and safety; and no independent functioning across self-care, safety or social

participation.

    In practice, this means a participant who cannot call for help, cannot follow instructions, and

cannot understand danger; who absconds, climbs fences and seeks water with no sense of risk, requiring constant one-to-one safeguarding; and who engages in behaviours, including aggression, self-injury and destructive meltdowns, that require specialist behaviour support and, at times, regulated restrictive practices under the National Disability Insurance Scheme Rules. These are not markers of developmental delay. They are the hallmarks of permanent, profound disability.

 When accompanied by comorbidities such as intellectual disability, global developmental

delay or complex behavioural profiles, Level 3 Autism is further characterised by minimal or no functional communication, profound absence of safety awareness, high-risk elopement and water- sseeking behaviours, self-injurious conduct, and the absolute necessity for constant one-to-one or wo-to-one supervision to preserve life. Research confirms that these presentations constitute a

distinct clinical and functional cohort (Lord et al., 2022). Individuals in this cohort are not merely high needs. They are at imminent and foreseeable risk of preventable death when supports are inadequate or withdrawn.

Submission 1693

Profound Autism Network

Scope of this Submission

This submission is made primarily on behalf of participants with Level 3 Autism (Severe and Profound Autism) as defined under DSM-5 criteria (American Psychiatric Association, 2013). The cohort is defined by functional profile with severe and profound level of impairment, not diagnosis alone, and includes participants presenting with one or more of the following characteristics:

-e Communication: Little to no ability to speak, write, sign, or use communication devices functionally.

-e Cognitive ability: An IQ measured at less than 50, or equivalent adaptive functioning impairment.

-e Care requirements: A need for 24-hour access to adult supervision and physical care to manage daily needs and safety.

-e High-risk behaviours: Documented elopement, water-seeking, self-injurious behaviour, pica, climbing, choking risk, catatonia, or equivalent life-threatening behavioural profile.

Transferability: All recommendations in this submission are intended to apply equally to any participant with severe and profound impairment who presents with one or more of the above characteristics, regardless of primary diagnosis. This includes participants with profound intellectual disability, severe cerebral palsy with complex communication needs, and equivalent presentations across neurodevelopmental, acquired, and genetic disability categories.

To demonstrating systemic failure across the Scheme more broadly, this submission also draws on a systematic review of 230 coronial findings identified using the keyword “NDIS” across all Australian jurisdictions to May 2026 (coronial.com.au, 2026).

The Bill’s Application to this Cohort

The Bill’s amendments to functional capacity assessment, the evidence hierarchy, permanence and support determinations will apply a uniform framework that fails to recognise the distinct risk profile and support requirements of this cohort. Standardised assessment tools and generalisable research, upon which the Bill places primary weight, have not been validated for non-verbal individuals with profound adaptive impairment and high-risk behaviours (Tager-Flusberg & Kasari, 2013). The result is a legislative scheme that systematically underestimates the intensity of supports required to maintain safety and prevent harm for this cohort.

The Government has repeatedly stated that a diagnosis is not required for access to the National Disability Insurance Scheme. Yet the Bill’s elevation of generalisable research and standardised functional capacity assessments effectively reintroduces a diagnosis-linked evidence hierarchy that disadvantages precisely those participants whose impairments are most profound and least amenable to population-level research. This internal contradiction undermines the Scheme’s foundational promise of individualised, needs-based support and exposes participants with Level 3

Submission 1693

Profound Autism Network

Autism and equivalent severe and profound impairment to the risk of arbitrary exclusion from the

supports they require to remain safe.

The Bill’s evidence hierarchy, functional capacity changes and potential support caps will

disproportionately harm this cohort. Standardised assessment tools are not validated for non-verbal

individuals. Generalisable research systematically excludes them (Russell et al., 2019). Carer

burnout and system failure are already documented at levels that have produced fatal outcomes, including four cases of non-verbal autistic children killed by parents between January and May 2026, in circumstances of total carer collapse and total system failure (documented in the coronial analysis at Section 3 below).

Illustrative Case Example: Persephone

Persephone (aged 5, name changed) provides a clear illustration of the systemic patterns that the Bill, if unamended, will entrench and accelerate across this cohort.

Persephone’s functional capacity is less than one per cent of her age peers. She performs at the developmental level of a twelve-month-old infant, while her younger sister, aged two, has already surpassed her across every developmental milestone to the three-to five-year range.

Persephone is non-verbal. She cannot speak, follow simple instructions or recognise danger. She engages in constant absconding and water-seeking behaviours, scaling fences between 1.3 and 1.8 metres at aftercare, climbing onto roofs, unclipping her harness and running directly into traffic, and dragging furniture to reach pools despite being unable to swim. She requires constant one-to-one supervision to remain safe. Without it, she has been left lying face down in a sandpit for more than three hours while staff failed to intervene. She engages in daily high-risk behaviours, including climbing, self-injury and aggression, such that most medical interventions require full sedation.

Nights remain unsafe: Persephone wakes repeatedly and will rest only when her body is pressed against an adult carer.

Persephone’s mother, Lucinda, lives with her own complex disabilities, including permanent damage to more than twenty joints, psoriatic arthritis, depression and separation from Persephone’s father. She rarely sleeps more than three consecutive hours. Three support workers have left the family with back injuries. Childcare services report they cannot recruit Inclusion Support, and Persephone now faces expulsion. The family has experienced profound carer burnout, economic collapse and adversarial review processes. Lucinda, who previously earned $145,000 annually, has been forced to leave the workforce entirely. At the Administrative Review Tribunal, detailed clinical

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reports documenting the father’s major depression, her parents’ recent separation due to severe mental health deterioration and the mother’s recollection of his suicidal and homicidal ideation were dismissed as inappropriate for the forum. The National Disability Insurance Agency’s lawyers required an independent functional capacity assessment despite the existence of extensive clinical evidence. The National Disability Insurance Agency imposed a generic step-down approach, notwithstanding the family’s documented permanent and profound support needs.

• The economic consequences of inadequate support extend well beyond the Scheme: carer workforce exit, increased reliance on income support, and downstream health system costs are the foreseeable and documented consequences of failing this cohort (Productivity Commission, 2011).

Persephone’s daily reality maps precisely to the DSM-5 criteria for Level 3 Autism (American Psychiatric Association, 2013). She is not quirky autistic; she is profoundly impaired by her primary disability. She requires the full legal, regulatory and funding architecture of the National Disability Insurance Scheme to survive. The same holds for participants with equivalent severe and profound impairment whose impairments place them at comparable risk and whose functional profiles fall within the scope of this submission as set out in the definition box above.

• This case demonstrates why safeguarding participants with Level 3 Autism and equivalent severe and profound impairment must lie at the heart of any reform to the Scheme. The evidentiary and administrative burdens imposed on families already at breaking point, the dismissal of clinical evidence in adversarial settings, and the application of generic intensity reductions that ignore foreseeable risk of harm are not isolated administrative shortcomings. They are the predictable consequences of a decision-making culture that privileges standardised tools and generalisable research over individual clinical and functional reality. The Bill’s provisions on functional capacity, evidence hierarchies and support determinations will replicate these failures at scale unless the Committee recommends explicit legislative safeguards. Only then will the Scheme give genuine effect to its statutory purpose of enabling participants to live with dignity, exercise choice and control, and participate in social and economic life on an equal basis with others.

Required Legislative Safeguards

• The Committee should recommend that the Bill be amended to insert a statutory definition of High-Risk Participant, as proposed in new section 34A, and to require that all decisions affecting this cohort, including any proposed reduction in supports, be subject to mandatory multidisciplinary clinical review before taking effect. The legislation must further provide that the absence of generalisable research shall not constitute a ground for refusing, capping or reducing supports for

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Profound Autism Network

participants who meet Level 3 Autism criteria or equivalent high-risk functional profiles, as defined in the definition box above.

These safeguards are not novel impositions on the Scheme. They give legislative expression to what the coronial record, the Federal Court and the Administrative Review Tribunal have already recognised: that participants with Level 3 Autism and equivalent severe and profound impairment occupy a distinct clinical and legal category, and that the consequences of treating them as interchangeable with the broader participant population are fatal.

3. CORONIAL AND JUDICIAL EVIDENCE: PREVENTABLE DEATHS AND SYSTEMIC FAILURE

Australia has already experienced the consequences of failing to safeguard participants with Level 3 Autism and equivalent severe and profound impairment. A systematic review of coronial findings across all Australian jurisdictions to May 2026 has identified 104 cases in which autism was a confirmed or strongly suspected diagnosis of the deceased (coronial.com.au, 2026). These cases span ten jurisdictions and eight thematic categories, with Victoria accounting for 66 per cent of findings. That dominance reflects Victoria’s robust and proactive coronial documentation practices. Other states and territories maintain significantly less comprehensive reporting processes for deaths involving people with disability, producing substantial under-reporting and an incomplete national picture of mortality risk for autistic individuals.

The dominant themes are drowning and elopement, choking and aspiration, suicide and self- harm in inadequately supported individuals, medical diagnostic failure attributable to communication barriers, and deaths in NDIS-funded settings where supervision, documentation and inter-agency coordination were identified as deficient. These findings demonstrate recurring structural deficiencies in risk identification, supervision, environmental safeguards and inter-agency coordination that are national in pattern and span more than two decades.

Systemic Failures Identified by Coroners

The coronial record constitutes clear and repeated notice to the Commonwealth that the current National Disability Insurance Scheme framework is failing to protect this cohort. Cross-cutting systemic failures identified by coroners include the absence of autism-specific clinical protocols in emergency and disability services; chronic inter-agency communication breakdowns; the absence of ASD-adapted suicide risk assessment tools; and inadequate oversight by the NDS Quality and Safeguards Commission of high-risk cohorts (coronial.com.au, 2026).

Submission 1693

Profound Autism Network

These are not isolated tragedies. They are the predictable result of systemic failure to

ercognise and fund the distinct, very substantial support needs of participants with Level 3 Autism

and equivalent severe and profound impairment: risks that the National Disability Insurance Scheme

was established to mitigate. The Bill’s proposed restrictions on access, functional capacity assessment, permanence and support determinations will foreseeably increase, not decrease, the incidence of preventable deaths if implemented without the safeguards proposed in this submission.

It is unnecessary to attribute improper motive to reach this conclusion. A scheme may produce unjust and unsafe outcomes through design deficiency, institutional inertia, and inadequate attention to the circumstances of the most vulnerable cohort. The Administrative Review Tribunal and Federal Court have affirmed the National Disability Insurance Agency’s obligation to fund specialist supports where severe risks are present. The Bill must not be permitted to undermine that obligation.

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Profound Autism Network

Implications for the Bill

  The two tables above, taken together, demonstrate that the risks faced by autistic children

with high and complex support needs are not confined to misadventure, elopement and drowning. They extend to carer collapse, familicide and deliberate harm under conditions of extreme isolation and inadequate funded support. The legislative protections sought in this submission, including explicit safeguards for Level 3 cohorts, individualised evidence presumptions, and exemptions from generic intensity caps, are essential to reducing the conditions that have produced these outcomes.

  The coronial and judicial record constitutes clear, repeated, and formally documented notice

to the Commonwealth of these risks. To permit the Bill’s access, permanence or other service system provisions to divert participants away from NDIS-funded safeguards without addressing this record would be to knowingly repeat preventable failures with fatal consequences.

Required Legislative Safeguards

  The Committee should recommend that the Bill be amended to require the National Disability

Insurance Agency and the NDIS Quality and Safeguards Commission to implement the Severe and Profound Disability Risk Escalation Tool as the mandatory risk triage instrument for participants with Level 3 Autism and equivalent high-risk presentations. The legislation must establish a national participant death review process with mandatory public reporting and must embed a statutory escalation right in new section 34B, modelled on the NSW Health RAISE IT framework, enabling participants or their carers to trigger urgent mandatory intervention when the system is failing to provide necessary safeguards.

  The Bill must further mandate independent oversight and public reporting on all participant

deaths, together with a requirement that deaths occurring while a participant is in receipt of NDIS- funded supports, or within a defined period following the withdrawal or reduction of such supports, be subject to coronial inquest. These reforms must explicitly encompass deaths arising from carer collapse, neglect and violence, ensuring that the systemic lessons documented in Tables 1 and 2 are translated into binding legislative obligations across the Scheme.

4. NDIS-RELATED CORONIAL FINDINGS: SYSTEMIC FAILURES ACROSS THE SCHEME (2014 TO 2026)

 A separate and equally compelling body of evidence emerges from a systematic review of

230 NDIS keyword coronial findings across all Australian jurisdictions to May 2026 (coronial.com.au, 2026). These cases involve NDIS participants, NDIS-funded providers, NDIS funding decisions, and the operation of the NDIS Quality and Safeguards Commission. Victoria accounts for 89 per cent of findings, reflecting its robust and proactive coronial documentation practices. Other states and 16 | P a g e

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territories maintain significantly less comprehensive reporting processes for deaths involving NDS participants, producing substantial under-reporting and an incomplete national picture of mortality risk for people with disability.

The 230 findings constitute direct and repeated notice to the Commonwealth that the current National Disability Insurance Scheme framework, including its access, planning, funding and safeguarding mechanisms, is failing to protect participants with complex and high-risk needs. The dominant themes, set out below, are consistent, national in pattern, and span the full period of the Scheme’s operation.

Dominant Themes Across the 230 Findings

• NDIS funding denials and system failures. Cases in which funding refusals or delays directly contributed to prolonged institutionalisation, inadequate community care, or death. Key cases include Samaan Elsamin, Peter Bolton, Didbala Anzac, Kelvin Forrest and Andrew Barr, examined in detail below.

• Aspiration pneumonia and choking. The leading cause of preventable death across the dataset, consistently linked to absent or poorly communicated mealtime support plans, inter-agency communication failures, and ambiguous food texture classifications. Key case: Mark Capovilla.

• Suicide and self-harm. Deaths attributable to inadequate crisis support, ligature risks in facilities, and gaps between NDIS-funded mental health supports and clinical psychiatric services.

• Family violence and homicide. Cases in which NDS providers were not integrated into state Multi-Agency Risk Assessment and Management frameworks, resulting in missed opportunities for coordinated risk response.

• SDA provider accountability and clinical skill gaps. Deaths arising from pressure injuries, wound care failures, and inadequate clinical competency in Specialist Disability Accommodation settings. Key case: Kristy Ann Mitchener.

• Restraint, use of force and acute behavioural episodes. Deaths arising from communication failures between clinical services and police during psychiatric transport and acute episodes. Key case: Ricky Broughton.

• Drowning and elopement in NDS settings. Deaths arising from inadequate risk assessment during community leave and transitions from secure facilities. Key cases: Benjamin Woodhouse, Carl Adler and Cameron De Vries.

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Profound Autism Network

The Bill must further require that deaths occurring while a participant is in receipt of NDIS- funded supports, or within a defined period following the withdrawal or reduction of those supports, be subject to mandatory coronial inquest. These reforms must apply across the full spectrum of NDIS-related mortality, including deaths arising from funding decisions, provider practice, and inter- agency coordination failures.The 230 findings, considered alongside the 104 autism-specific coronial findings and the additional media-reported deaths of autistic children addressed in Section 3, establish a body of evidence that the Committee cannot responsibly set aside. NDIS funding decisions, provider accountability, inter-agency communication and the effectiveness of the Commission are matters of life and death. The Bill must embed safeguards that prevent the documented failures from recurring.

5. RISK TRIAGE AND ESCALATION: THE INADEQUACY OF THE NDIA’S CURRENT FRAMEWORK

   The internal Escalation and Prioritisation Matrix maintained by the National Disability Insurance Agency (dated November 2021) is not adequate to the task of identifying and responding to imminent risk of serious harm or death for participants with Level 3 Autism and equivalent severe and profound impairments. It is a generic risk management instrument that treats participant safety as one risk category among ten, without specific triggers for the behaviours and circumstances repeatedly identified in coronial findings as contributing to preventable death.

Deficiencies in the Current Matrix

  The current matrix does not identify elopement, water-seeking, choking risk, self-injurious

behaviour, pica, or catatonia as independent high-risk triggers requiring immediate escalation. It doest not recognise carer psychological deterioration, burnout, or medical contraindication to sustained caregiving as high-risk factors, despite the coronial record documenting their direct contribution to participant deaths and familicide. It contains no mechanism for participants or carers to trigger mandatory escalation when they identify an imminent risk that the Agency has not yet recognised or responded to. It permits participants exhibiting multiple documented high-risk behaviours to remain classified at Low or Medium priority because the behaviours do not align with the matrix’s generic categories.

  The deficiencies are not hypothetical. They are documented across the coronial findings

addressed in Sections 3 and 4, and across Administrative Review Tribunal proceedings in which families have reported imminent risk of harm and have been required to wait months for plan reviews while the risk remained unaddressed.

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The Severe and Profound Disability Risk Escalation Tool

A superior framework has been developed in consultation with clinicians, industry experts, and families with lived experience of navigating the NDIS in high-risk circumstances. The Severe and Profound Disability Risk Escalation Tool is clinically grounded, cohort-specific, and calibrated to the functional realities of Level 3 Autism and equivalent severe and profound impairment.

The tool uses a clear tiered structure: LOW, MEDIUM, HIGH, EXTREME, and CHANGE OF GOAL / CRISIS TRANSITION. It distinguishes between Automatic Qualifiers, where a single indicator triggers the classification, and Sub-qualifiers, where multiple indicators are required. Critically, it does not automatically classify a person as high risk by virtue of diagnosis alone. It requires specific, observable risk indicators across multiple domains, including:

• documented elopement, water-seeking, climbing or absconding behaviour with no safety awareness;

• choking risk, pica, or catatonia requiring medical intervention;

• carer mental health deterioration, burnout, compassion fatigue, or medical certification that sustained caregiving is contraindicated;

• cumulative harm risk to participant, carers, or others arising from inadequate supervision or support;

• loss of informal care capacity due to carer illness, injury, or withdrawal; and

• system failure or safeguarding escalation at the Extreme level, including participant or carer notification of imminent risk under a statutory RAISE IT mechanism.

The Standard the State Applies to Other High-Risk Contexts

When a police officer, military officer or emergency worker presents with acute psychological distress and receives medical certification that they are unfit for duty, the responsible authority immediately removes them from active duty, not as punishment but as a safeguarding measure for the officer and for the public. That response reflects a recognition that certain roles carry life-and- death responsibility, and that continuing to perform those roles while psychologically or physically unfit creates an unacceptable risk.

Primary carers of children with Level 3 Autism occupy an equivalent position. They manage constant, high-stakes, life-and-death risk with no capacity for the person in their care to self-protect or call for help, no rotation system, no welfare checks, and no mechanism for stepping down from

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duty when the psychological and physical cost becomes unsustainable. The difference is that police officers are employees of the State with enforceable workplace protections, while carers of people with profound disability are unpaid and, under the current NDIA framework, are expected to continue caring regardless of their capacity to do so safely.

The submission does not suggest that carers should be removed from caring. It submits that when a carer reports, or is clinically assessed as experiencing, severe psychological distress, burnout, compassion fatigue, or a medical condition that impairs safe caregiving, the Agency’s obligation is to provide immediate relief through funded supports at the intensity required to eliminate the risk, not to require the carer to continue until a catastrophic outcome occurs.

The coronial record demonstrates that requiring carers to continue in those circumstances does not preserve family caregiving. It produces family collapse, carer breakdown, and in the most extreme cases documented in Section 3, familicide. The State’s obligation, arising from Article 10 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006) and from the objects of the National Disability Insurance Scheme Act 2013 (Cth), is to apply a standard of risk identification and response that is at least equivalent to the standard applied in other contexts where the State has knowledge of life-and-death risk.

Required Legislative Safeguards

e The Committee should recommend that the Bill be amended to insert new section 34A, establishing a statutory definition of High-Risk Participant and mandating the adoption of the Severe and Profound Disability Risk Escalation Tool (detailed in Appendix A), or an equivalent clinically validated instrument, as the primary risk triage framework for participants with Level 3 Autism and equivalent severe and profound impairment.

e The Bill must further insert new section 34B, establishing a statutory escalation right modelled on the NSW Health RAISE IT framework, enabling participants or their carers to trigger urgent mandatory review when they identify an imminent risk of serious harm or death that the Agency has not adequately responded to. That right must operate independently of the standard plan review process and must require a response within a defined and short timeframe.

e The legislation should require the NDIA to commission an independent expert review of its risk triage operating model, to be conducted by clinical, actuarial, and disability rights experts with demonstrated expertise in severe and profound impairment, with findings and recommendations to be tabled in Parliament and referred to the Joint Standing Committee on the National Disability

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Insurance Scheme for inquiry and report. The NDIS Quality and Safeguards Commission must be given explicit statutory powers to monitor and enforce compliance with the revised risk triage framework, including powers to issue binding directions where the Agency’s response to identified high risk is assessed as inadequate.

These reforms would ensure that the Agency applies a standard of risk identification and escalation that is adequate to its statutory responsibility and to the realities documented in the coronial record. The preventable deaths identified in Sections 3 and 4 are not inevitable. They are the foreseeable consequence of a risk management framework that is inadequate to the cohort it purports to protect. The Bill must not entrench that inadequacy.

The full Risk Escalation Tool, including clinical triggers and classification criteria, is provided in Appendix A.

6. GENERALISABILITY AND TRANSFERABILITY TO OTHER SEVERE

AND PROFOUND DISABILITIES

The Severe and Profound Disability Risk Escalation Tool and the legislative framework proposed in this submission are not autism-specific in principle. They are designed around the universal characteristics of profound disability that create extreme vulnerability: minimal or no functional communication; profound absence of safety awareness; high-risk behaviours including elopement, water-seeking, pica and self-injury; complete or near-complete dependence on others for survival; high risk of carer burnout and system failure; and inability to self-advocate or self-protect.

These characteristics are present across multiple diagnostic categories, including severe and profound intellectual disability regardless of cause; severe cerebral palsy with complex communication and mobility needs; Rett syndrome and other severe neurodevelopmental disorders; severe traumatic brain injury in childhood; progressive neurological conditions in young people such as advanced Huntington’s disease or Batten disease; and severe multiple disabilities including deaf, brainness with profound intellectual disability. The protections sought in this submission are therefore transferable and should apply to all participants who present with these functional risk profiles, regardless of diagnostic label.

The Internal Contradiction in the Bill’s Approach

The Australian Government has repeatedly stated that the National Disability Insurance Scheme is not a diagnosis-based scheme, and that eligibility and support are determined by functional impairment, not by diagnostic label (National Disability Insurance Scheme Act 2013 (Cth), 22 | P a g e

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s 24). This principle was central to the original design of the Scheme and was repeatedly emphasised

during the NDIS transition.

   Yet the  Bill does the opposite  in  practice.  It elevates published, peer-reviewed and

generalisable research to greatest weight in determining whether supports are effective and beneficial: research that systematically excludes or under-represents people with profound, complex and communication-limited disabilities (Russell et al., 2019; Tager-Flusberg & Kasari, 2013). It introduces functional capacity assessment changes that rely on standardised tools not validated for non-verbal or profoundly impaired individuals. It creates incentives for the Agency to divert participants to other service systems that were never designed for people with 24-hour, lifelong, high-risk support needs. It contemplates intensity caps derived from studies that do not include the cohort most in need of intensive support.

   While the Government states the NDIS is not diagnosis-based, the Bill creates a system that

is effectively diagnosis-based in its operation, because only those whose impairments match the populations studied in generalisable research will reliably receive adequate supports. People with rare, complex or profound presentations, precisely those most at risk of preventable death, are systematically disadvantaged. This is not merely poor policy. It is a departure from the foundational principle of the Scheme and incompatible with Australia’s obligations under Articles 5 and 19 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006) to ensure equality and non-discrimination based on disability type or communication modality.

Required Amendments

  The Committee should recommend insertion of new section 3C into the National Disability

Insurance Scheme Act 2013 (Cth) in the following terms:

Proposed section 3C: Whole person impairment and non-discrimination

    (1) In administering this Act, the CEO and the Agency must assess each participant based

on their whole person functional impairment and support needs, and not by reference to diagnostic categories or population averages derived from research that excludes or under-represents people with profound or complex disability.

    (2) No participant shall be disadvantaged in access to supports, or in the intensity or duration

of supports funded, by reason that their impairment profile or communication modality is not adequately represented in published, peer-reviewed research.

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(3) Where a participant’s impairment is assessed as permanent under section 24, permanence shall be accepted without requiring exhaustion of interventions that are clinically futile or contraindicated for that individual’s presentation.

This provision gives legislative expression to the Scheme’s foundational promise that supports are determined by functional need, not by diagnostic label or research availability. It ensures that the Bill’s evidence hierarchy and functional capacity provisions do not operate as an indirect form of discrimination against the cohort with the most complex and least-researched presentations.

7. INDEPENDENT RESEARCH ADVISORY COUNCIL FOR EVIDENCE GOVERNANCE

The Bill’s evidence hierarchy gives statutory primacy to published, peer-reviewed, and generalisable research in determining whether supports are effective and beneficial. As addressed in Section 5, that hierarchy will foreseeably disadvantage participants with Level 3 Autism and equivalent severe and profound impairment because the research base systematically excludes or under-represents this cohort (Russell et al., 2019; Tager-Flusberg & Kasari, 2013).

The appropriate remedy is not to reject evidence-based practice. It is to ensure that the evidence relied upon by the Agency is appropriately interpreted, that its limitations are identified and documented, and that decisions affecting cohorts absent from the research base are informed by individualised clinical evidence and lived experience rather than by extrapolation from non- representative samples.

Proposed Independent Research Advisory Council

The Committee should recommend that the Bill be amended to establish an Independent Research Advisory Council on Disability Evidence and Practice, with the following functions:

(a) to review the generalisability and external validity of research relied upon by the Agency in access, planning, and support determination decisions, with particular attention to cohorts systematically excluded from intervention trials;

(b) to identify gaps in the evidence base for participants with profound and complex disability, including non-verbal and minimally speaking participants, participants with high-risk behavioural profiles, First Nations participants, and culturally and linguistically diverse participants;

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(c) to provide binding advice to the CEO on the appropriate weighting of published research, individualised clinical evidence, and lived experience evidence in decisions affecting underrepresented cohorts;

(d) to commission and oversee research into severe and profound impairment support needs, including longitudinal studies of intensive support outcomes for Level 3 Autism and equivalent presentations; and

(e) to report publicly and to Parliament on the Agency’s compliance with evidence-based practice principles, including compliance with the requirement to give primary weight to individualised c临ical evidence where generalisable research does not represent the participant’s circumstances.

(f) make research accessible for all Australians.

Composition and Governance

The Council must be constituted with equal representation from three constituencies: academic researchers with demonstrated expertise in disability, neurodevelopment, and evidence synthesis; practising clinicians with expertise in severe and profound impairment, including behaviour support practitioners and allied health professionals; and people with lived experience of disability and family carers of people with profound disability.

The lived experience constituency must include a quota of representation from underrepresented groups, including minimally verbal and non-speaking autistic people, carers of people with Level 3 Autism or equivalent severe and profound impairment, rural and remote areas, First Nations people with disability or family members of First Nations participants, and culturally and linguistically diverse participants and carers.

The Council must be funded adequately to perform its functions, including commissioning independent research, convening expert panels, and publishing findings. Its advice to the CEO on the interpretation and application of research evidence in individual cases or for specific cohorts must be binding, subject to merits review by the Administrative Review Tribunal on the ground that the advice was based on a material error of fact or law.

Accountability and Reporting

The Council must publish an annual report detailing the Agency’s reliance on generalisable research for cohorts not represented in that research, identifying decisions in which research was applied beyond its validated scope, and recommending systemic reforms to the Agency’s evidence

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assessment practices. That report must be tabled in both Houses of Parliament and referred to the

Joint Standing Committee on the National Disability Insurance Scheme for inquiry and report.

   This model ensures that the Bill's evidence hierarchy operates as intended, advancing

evidence-based practice, while preventing it from operating as a structural barrier to necessary supports for participants whose presentations fall outside the mainstream research base. It gives institutional form to the principle that evidence-based practice requires the best available evidence for the decision at hand, not the most generalisable evidence in the abstract.

7. THE BILL’S EVIDENCE HIERARCHY AND EXTERNAL VALIDITY FOR LEVEL 3 COHORTS

   The Bill introduces a statutory evidence hierarchy that gives “greatest weight” to evidence that is “published, peer reviewed and generalisable” when determining whether a support is “effective and beneficial” for a participant. While this criterion appears facially neutral, its application to children with Level 3 Autism Spectrum Disorder presents a profound and foreseeable risk of systemic under-funding of life-preserving supports for the cohort with the highest and most complex needs.

   The central concern is not with the principle of evidence-informed decision-making, which this submission supports. The concern is structural: the proposed hierarchy does not account for the well-documented failure of the autism intervention research literature to represent, or stratify findings by, participants with profound functional impairment, minimal or absent communication, and high- risk behavioural profiles. Where the research base systematically excludes a cohort, elevating that research to statutory primacy does not promote rigour. It entrenches inequity.

   The Committee should assess this provision not only by its stated design but by its foreseeable administrative effect. Recent patterns in Administrative Review Tribunal and Federal Court proceedings indicate that the hierarchy as drafted will predictably operate to impose de facto dosage ceilings on the participants whose needs the Scheme was designed to protect most comprehensively.

The External Validity Gap and Its Consequences

  The concern is illustrated by the use of Sandbank et al. (2024), a meta-analysis of 144 early

childhood intervention studies involving 9,038 children, which has been relied upon in a pattern of Tribunal and Agency decisions to reject or substantially reduce requests for intensive therapy for children with Level 3 Autism, profound functional impairment, global developmental delay, and high-

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risk behaviours. Therapy packages are routinely reduced from the range of 20 to 27 hours per week to 12 to 14 hours per week by reference to this study.

  The methodological difficulty is not that the study is poorly conducted. The difficulty is external

validity: the applicability of its findings to children in the highest-need cohort. Sandbank et al. (2024) reports overall sample characteristics including total sample size, mean participant age, and sex distribution, but does not report the proportion of minimally verbal or non-verbal participants in the pooled sample; Level 3 autism severity classifications; proportions of participants with profound adaptive impairment; stratified analyses by communication modality; or stratified analyses by severity or degree of functional impairment.

   This omission is significant. Minimally verbal children comprise approximately 25 to 30 per

cent of the autistic population (Tager-Flusberg & Kasari, 2013) yet appear in as little as approximately 2 per cent of autism research samples (Russell et al., 2019). A meta-analysis that doest not stratify by communication modality, diagnostic severity, profound adaptive impairment, or high-risk behavioural profile cannot safely be treated as determinative evidence of appropriate therapy dosage for a child presenting with Level 3 autism, absent functional communication, severe and profound functional impairment, global developmental delay, and extremely low adaptive functioning.

  The consequence of treating such a study as the primary evidentiary benchmark for this

to cohort is not a minor calibration error. It is the structural application of population-level averages derived from samples that systematically excluded the very children whose safety depends on individualised, intensive and clinically directed support. A system that elevates such research to statutory “greatest weight” without requiring demonstration of subgroup applicability will foreseeably produce, at scale, decisions that are evidence-referenced but not evidence-based in any meaningful sense for this population.

The Risk of Insufficient Supports: A Safeguarding Gap the Bill Does Not Address

  The Bill's evidence hierarchy, as drafted, creates a one-sided risk calculus. It is oriented

principally toward constraining what may be funded, without a corresponding mechanism to assess the harm that arises from funding that is set too low.

   This asymmetry is directly inconsistent with the express caution of the authors whose

research is most frequently invoked to justify dosage reduction. Sandbank et al. (2024) states:

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“Practitioners should be especially careful to calibrate an appropriate amount of support for autistic people with high support needs, especially those who are at risk of injury if left unsupported. There is likely a minimum amount needed for intervention to have any benefit at all and, potentially, an optimal amount of intervention that is dependent on the child. Unfortunately, current evidence does not offer clear values or ranges for those amounts.” (p. 771)

That caution is not peripheral to the paper’s findings. It is integral to them. The authors explicitly declined to specify a dosage threshold for high-needs participants precisely because the evidence does not support one. To use the same paper to impose a de facto numerical ceiling on the cohort the authors identify as requiring particular care is to apply the research in a manner inconsistent with its own stated limits.

The Committee should note that the risk of under-support for Level 3 non-verbal children is not theoretical. Coronial records and child-protection proceedings in Australia have documented deaths of autistic children from absconding, drowning and road trauma in circumstances where the adequacy of supervision and funded support was a central issue, as detailed in Section 3 of this submission. These deaths are a measurable consequence of the failure to treat the risk of insufficient support as a live safeguarding question. The Bill, as currently drafted, does not require decision- makers to address that question at all.

Any amendment to the evidence hierarchy that does not include a corresponding obligation to assess and document the risk of harm from under-support will be incomplete as a matter of both policy and administrative justice.

Administrative Patterns: The Evidence Hierarchy in Practice

The foreseeable administrative effect of the evidence hierarchy is not hypothetical. Recent Administrative Review Tribunal and Federal Court decisions demonstrate a consistent pattern of reliance on Sandbank et al. (2024) to reduce therapy packages for children with Level 3 Autism from 20 to 27 hours per week to 12 to 14 hours per week, including in cases involving non-verbal children with documented high-risk behaviours (DKQG ARTA 1117; Cali v NDIA FCA 135; YDTQ ARTA 325; ZPCZ ARTA 1363; VWJC ARTA 840). In each case, the tribunal applied population-level dosage inferences to children whose profiles were not demonstrated to be represented in the underlying research sample.

Where Generalisable Evidence Does Not Exist: The Obligation to Accept the Best Available Evidence

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Profound Autism Network

The statutory framework must confront a foundational reality of the research landscape. For

participants with Level 3 Autism, minimal or absent communication, profound functional impairment, and high-risk behavioural profiles, generalisable population-level evidence does not currently exist. This is not because the relevant science is unsettled in a general sense. It is because this population is systematically and persistently excluded from the research samples from which generalisable evidence is derived (Russell et al., 2019; Stedman et al., 2018).

    In those circumstances, a statutory hierarchy that requires "greatest weight" to be given to

generalisable research will not produce better decisions for this cohort. It will produce decisions grounded in research that was not designed for, and cannot speak to, the circumstances of the participant before the decision-maker.

  The principle of evidence-based practice does not require, and does not permit, the

mechanical application of population-level averages to individuals whose circumstances are not represented in the underlying research. As articulated by Spencer et al. (2012) in a decision-making framework adapted for use by the Autism Centre of Excellence at Griffith University, “best available evidence” is the evidence most relevant to the decision context that offers the greatest degree of certainty for the specific population concerned. The framework is explicit that methodologically rigorous research can be misapplied where the population studied does not correspond to the population being decided for. External validity and contextual fit are not secondary considerations. They are fundamental to the legitimate exercise of evidence-based judgment.

  Where generalisable peer-reviewed evidence does not exist for a specific cohort due to

structural under-representation in the research literature, the Bill’s evidence hierarchy must be construed, and if necessary amended, to require the decision-maker to give primary weight to randomised controlled trials and single-case experimental designs involving participants in comparable circumstances, even where sample sizes are small and formal generalisability is limited; individualised functional capacity assessments and risk assessments conducted by treating clinicians with demonstrated expertise in severe and profound autism; progress monitoring data and functional outcome evidence specific to the individual participant; and coronial, child-protection, and NDIS Quality and Safeguards Commission findings regarding participants or children in like circumstances.

  The analogy to cardiovascular research is instructive and has been recognised as such in

the broader literature on research inclusion and external validity. For many years, cardiovascular intervention research relied predominantly on male participants. The consequence was that women’s 29 | P a g e

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presentations of acute cardiac events were systematically misdiagnosed or inadequately treated, not because the science was methodologically unsound, but because the evidence base did not reflect the population being treated (Tobb et al., 2022). The parallel is exact: methodologically sound research applied beyond its validated population produces systematic harm, not because the science is flawed, but because the generalisation is inappropriate. The same structural error arises in autism research when population-level findings are applied to profoundly impaired, minimally verbal participants without any demonstrated basis for concluding that such participants were represented in the research generating those findings.

The Statutory “Like Circumstances” Test

  The statutory task under section 34 of the National Disability Insurance Scheme Act 2013

(Cth), and rule 3.2 of the NDIS (Supports for Participants) Rules 2013, requires the decision-maker to consider whether a support is likely to be effective and beneficial for others in like circumstances. Rule 3.2 specifically directs attention to evidence of effectiveness and benefit for others in like circumstances (NDIS (Supports for Participants) Rules 2013 (Cth), r 3.2).

  The phrase "like circumstances" is not satisfied by evidence derived from a substantially

different cohort. For a child with Level 3 Autism, “like circumstances” necessarily includes the following characteristics: non-verbal or minimally verbal communication profile; profound adaptive impairment; high support needs and complex behavioural profile; global developmental delay; documented risk of harm if under-supported or unsupervised; and carer capacity that is significantly constrained by the nature and intensity of support required.

 A meta-analysis that does not demonstrate the representation of children with these

characteristics in its underlying sample cannot constitute evidence of effectiveness or benefit for “others in like circumstances” within the meaning of rule 3.2. Elevating such a study to statutory “greatest weight” will foreseeably result in the “like circumstances” test being formally satisfied by evidence that does not, in substance, speak to the circumstances of the participant being assessed.

   That outcome is not merely a technical deficiency. It is a failure of administrative justice that

the Bill, as drafted, will entrench.

Recommended Legislative Safeguards

  The Committee should recommend the following amendments to the Bill.

Proposed Amendment 1: Exclusion from the evidence hierarchy for Level 3 and equivalent profound disability cohorts

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The Committee should recommend insertion of a new subsection in proposed section 33A (or its equivalent) in the following terms:

(3A) Subsection (3) does not apply, and the CEO must instead give primary weight to individualised clinical and functional evidence, including evidence from treating allied health practitioners, behaviour support practitioners, paediatricians, and relevant specialists, where the participant:

(a) meets DSM-5 or equivalent diagnostic criteria for Level 3 Autism Spectrum Disorder; or (b) has minimal or no functional communication; or (c) has a documented history of elopement, attraction to water without awareness of drowning risk, choking or dysphagia risk, self-injurious or other high-risk behaviour, or requires 2:1 or constant supervision to maintain safety.

Proposed Amendment 2: Explicit obligation to assess risk from under-support (PRIORITY AMENDMENT)

The Committee should recommend insertion of a new subsection in the “effective and beneficial” provision, proposed new section 34(1)(d) or its equivalent:

(1) (da) In determining whether a support is likely to be effective and beneficial for a participant who meets DSM-5 criteria for Level 3 Autism Spectrum Disorder, or who presents with equivalent profound impairment with minimal or no functional speech and a high-risk behavioural profile, the CEO must give primary weight to:

(i) individualised functional capacity assessments and risk assessments conducted by clinicians with demonstrated expertise in severe and profound autism; (ii) evidence of the participant’s actual functional gains, regression or safety incidents under current or prior support levels; and (iii) coronial, child-protection or NDIS Quality and Safeguards Commission findings concerning the participant or children in like circumstances, and must not treat the absence of subgroup-stratified data in a general population meta-analysis as determinative or as outweighing the matters identified in subparagraphs (i) to (iii).

Proposed Amendment 3: Independent review of generalisability classifications

The Bill should provide that research may not be classified as “generalisable” for the purposes of the evidence hierarchy unless reviewed and approved for that classification by the Independent Research Advisory Council on Disability Evidence and Practice proposed in Section 6 of this submission. This requirement would address the inherent conflict of interest that arises where

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the Agency whose primary institutional obligation includes scheme sustainability is also the body determining which research qualifies as generalisable for the purpose of limiting support funding.

Proposed Amendment 4: Mandatory documented risk assessment before applying intensity limits

The Bill should be amended to provide that before any maximum intensity limit, whether specified by legislative instrument under proposed sections 33(2EA) and 33(2EB) or otherwise applied, is given effect in respect of a participant with Level 3 Autism or equivalent profound impairment, the decision-maker must prepare, and retain on file, a written assessment of the risk of harm to the participant if supports are set at or below the proposed limit.

This requirement is directly consistent with the express caution of the authors of the study most frequently relied upon in dosage decisions: that there is likely a minimum amount of intervention needed for any benefit at all, and an optimal amount dependent on the individual child, and that current evidence does not offer clear values or ranges for those amounts (Sandbank et al., 2024, p. 771). If that caution is sufficient reason to decline to specify a minimum or optimal dosage threshold, it is also a sufficient reason to require that any ceiling applied to a high-risk participant be accompanied by a documented assessment of the consequences of that ceiling for that participant.

Proposed Amendment 5: Published evidence framework for severe and profound autism

The Agency should be required to publish, within 12 months of commencement, a specific evidence framework and research investment strategy for severe and profound autism, developed in partnership with the Independent Research Advisory Council and with families and carers with lived experience of Level 3 and equivalent high-complexity presentations. That framework should identify the categories of evidence to be given primary weight where generalisable population-level research does not represent this cohort, and the process by which participant-specific clinical evidence will be received, weighed and documented in individual decision

The evidence hierarchy introduced by this Bill can advance the quality and consistency of decision-making for many participants. For participants with Level 3 Autism, profound functional impairment, minimal or absent communication, and documented risk of harm without adequate support, however, the hierarchy as drafted presents a foreseeable and serious risk of entrenchment of decisions that are superficially evidence-referenced but substantively unjust.

The amendments proposed above would not undermine the Bill’s legitimate objectives. They would ensure that the statutory requirement to consider evidence about “others in like

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circumstances“ is applied in a manner that requires genuine correspondence between the research

relied upon and the cohort being assessed. They would restore the safeguarding dimension that the

Bill currently omits: the obligation to weigh, document and take seriously the risk of harm from

insufficient support, not only the risk attributed to intensity.

  The NDIS was established to advance the dignity, autonomy and full social participation of

people with disability on an equal basis with others. That purpose is not served by a framework that

gives statutory primacy to research that systematically excludes the people with the greatest need

for its protection. The amendments proposed here would align the administration of the Scheme with

both its rights-based foundation and its practical obligation to those it was most urgently designed to

serve.

8. HUMAN RIGHTS AND LEGAL OBLIGATIONS

Australia’s International Obligations

  The NDIS was established, in part, to give domestic effect to Australia's obligations under

the Convention on the Rights of Persons with Disabilities (United Nations, 2006), to which Australia

is a party. The Bill must therefore be assessed not only against its stated policy objectives but against

whether its provisions are compatible with those obligations. The Statement of Compatibility with

Human Rights accompanying the Bill does not appear to adequately address the disproportionate

impact of the evidence hierarchy, functional capacity provisions, and intensity limits on participants

with profound disability, minimal functional communication, and high-risk profiles. That omission is

itself a matter requiring the Committee’s attention.

  The CRPD articles most directly engaged by the Bill's provisions include the following:

   Article 3 establishes the general principles of the Convention, including respect for inherent

dignity, individual autonomy, non-discrimination, and full and effective participation and inclusion in

society (United Nations, 2006). Any provision that systematically restricts access to supports for the

cohort with the highest and most complex needs engages these principles directly.

   Article 7 requires that, in all actions concerning children with disabilities, the best interests

of the child shall be a primary consideration, and that children with disabilities have the right to

express their views on all matters affecting them (United Nations, 2006). For non-verbal children with

Level 3 Autism, the obligation to give primacy to their best interests falls entirely on the State, as

they cannot exercise voice in the administrative process. That obligation cannot be discharged by

reliance on research that does not represent their circumstances.

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Article 10 affirms the inherent right to life and requires States Parties to take all necessary measures to ensure its effective enjoyment by persons with disability on an equal basis with others (United Nations, 2006). The coronial record in Australia establishes that, without adequately funded 24-hour supervision and specialist behavioural supports, children with Level 3 Autism face a real and foreseeable risk of death from absconding, drowning, and road trauma (see Sections 3 and 4).

A Bill that entrenches a dosage framework incapable of addressing that risk engages this obligation directly.

Article 14 protects the right to liberty and security of person (United Nations, 2006). For a non-verbal child with no safety awareness and high-risk elopement behaviour, liberty without adequate supervision is not freedom. It is exposure to preventable harm. The provision of adequate funded supports is, for this cohort, a precondition of safe participation in community life.

Article 15 addresses freedom from torture and cruel, inhuman or degrading treatment or punishment (United Nations, 2006). Systemic neglect of a person’s basic safety needs, where the risk is known and the harm is preventable, engages this article’s prohibitions. The Committee should consider whether a framework that knowingly applies a dosage ceiling derived from an inapplicable research base to children at documented risk of preventable death is compatible with this obligation.

Article 19 affirms the equal right of persons with disability to live in the community with choices equal to those of others (United Nations, 2006). For children with Level 3 Autism, meaningful community inclusion requires intensive, funded, regulated and individualised supports. It is not achieved by placing a child with no safety awareness and no functional communication in a mainstream or under-supported setting with hours of therapy set by reference to population averages that exclude that child’s profile.

Article 23 requires the State to provide appropriate assistance to persons with disability in the performance of child-rearing responsibilities (United Nations, 2006). Carer breakdown and relinquishment into out-of-home care are documented consequences of inadequate NDIS funding for Level 3 children. The Bill’s intensity limits and evidence hierarchy will foreseeably increase that risk for the most under-supported families.

Article 25 affirms the right to the enjoyment of the highest attainable standard of health, including early identification and intervention services (United Nations, 2006). Imposing dosage ceilings on early intervention without demonstrated applicability to the relevant cohort is difficult to reconcile with this obligation.

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Article 28 affirms the right to an adequate standard of living and social protection, including the right to assistance with disability-related expenses (United Nations, 2006).

8.2 The Right to Life under the ICCPR

The right to life under Article 6 of the International Covenant on Civil and Political Rights (United Nations, 1966) imposes positive obligations on the State to take reasonable steps to protect individuals whose lives are at real and immediate risk. This is not a novel proposition. It is settled international human rights law. The coronial record in Australia establishes that, without NDIS- funded intensive supervision and specialist supports, children with Level 3 Autism face precisely such a risk (see Sections 3 and 4). Where the State has knowledge of that risk, derived from coronial findings and the documented pattern of deaths, and proceeds nonetheless to entrench a funding framework incapable of addressing it, the positive obligation to protect life is directly engaged.

It is unnecessary to characterise the Bill’s design as intentionally harmful in order to reach this conclusion. A framework may breach positive human rights obligations through inadvertence, institutional inertia, and inadequate attention to the circumstances of the most vulnerable cohort, as readily as through deliberate action. The question for the Committee is whether the Bill as drafted takes reasonable steps to protect life for this group, or whether it will predictably reduce the likelihood of adequate support reaching those who need it most.

8.3 The Structural Conflict of Interest

Internal research obtained under Freedom of Information Request 24/25-0380 reveals that the NDIA’s own Technical Advisory Branch produces generic literature reviews intended for internal decision-making that do not address the distinct needs of Level 3, minimally verbal, or high-risk cohorts. Of the 19 research documents released, none stratified findings by DSM-5 severity level, communication modality, or high-risk behavioural profile, despite multiple papers addressing autism spectrum disorder interventions and supports (National Disability Insurance Agency, 2024).

The Agency’s institutional priorities include meeting financial key performance indicators and scheme sustainability targets. Permitting the Agency itself to determine what constitutes “generalisable” or “effective and beneficial” evidence for the purpose of a statutory hierarchy creates an inherent conflict of interest and leaves participants with profound disability at heightened risk of exclusion on grounds that are instrumentally convenient rather than clinically or legally sound.

That conflict is not resolved by the Statement of Compatibility with Human Rights. It is a structural feature of the Bill’s design that requires an independent check.

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The inadequacy of the Agency’s approach to risk and mortality is compounded by a broader systemic failure. The NDIS Quality and Safeguards Commission’s own scoping review acknowledged in 2019 that there is no explicit code for disability status within the National Coronial Information System database, and that identification of deaths of people with disability requires time-and labour-intensive manual review (Salomon & Trollor, 2019). Five years later, that gap remains unaddressed. The absence of systematic flagging, tracking, and review of participant deaths means the Agency cannot learn from preventable deaths even when coronial findings identify clear patterns of systemic failure.

Recommended Legislative Amendment

The Committee should recommend the insertion of a new section 4(4) requiring the CEO and the Agency to give primary consideration to Australia’s obligations under the Convention on the Rights of Persons with Disabilities in all exercises of power or function under the Act, with particular regard to Articles 3, 7, 10, 14, 15, 19, 23, 25 and 28; to ensure that no decision exposes a participant to a foreseeable risk of serious harm or death where that risk could be mitigated by the provision of reasonable and necessary supports; and, in respect of participants with Level 3 Autism or minimal functional communication, to treat the best interests of that participant as a primary consideration, consistent with Article 7 of the Convention and the principle that rights-holders with profound disability must not bear the administrative and evidentiary burden of establishing their own entitlement to life-preserving supports.

The full proposed text of section 4(4) is set out in Section 10, Amendment 6 of this submission.

The Broader Principle

The NDIS was established to give domestic effect to the promise that people with significant and permanent disability would be supported to live with dignity, exercise choice and control, and participate in the life of their communities on an equal basis with others. That promise was not conditional on the existence of generalisable peer-reviewed research validating every support that a profoundly disabled person requires to remain alive and safe. It was a rights-based commitment grounded in recognition of the inherent worth and equal standing of every person with disability.

The Bill’s sustainability measures engage legitimate public interests. Scheme integrity, fiscal responsibility and quality assurance are proper objects of legislation. However, they must be pursued in a manner that does not hollow out the Scheme’s fundamental purpose for those who need it most.

Submission 1693

Profound Autism Network

A framework that is sustainable only because it systematically under-funds the cohort with the greatest and most complex needs does not achieve sustainability in any sense consistent with Australia’s human rights obligations. It transfers the cost of the Scheme’s financial targets onto the safety, health and survival of those least able to absorb it.

The amendments proposed in this submission would not undermine the Bill’s legitimate objectives. They would ensure that the pursuit of those objectives does not come at the cost of the lives and dignity of children with profound disability.

9. ANALYSIS OF KEY BILL PROVISIONS: IMPLICATIONS FOR PARTICIPANTS WITH LEVEL 3 AUTISM AND EQUIVALENT PROFUND DISABILITY

The Bill introduces significant structural changes to the Scheme across multiple domains: the statutory definition of functional capacity, the meaning of permanence, eligibility criteria in relation to other service systems, planning and reassessment processes, support determinations, integrity measures, and governance including automated decision-making. These changes are presented, in the Explanatory Memorandum, as technical refinements directed at scheme sustainability and improved consistency. Their collective effect, however, is to shift the Scheme toward a more restrictive, evidence-hierarchy-driven and cost-contained model of access and support determination.

For participants with Level 3 Autism, profound adaptive impairment, minimal or absent functional communication, and high-risk behavioural profiles, each of these changes carries particular risk. The following analysis addresses the principal provisions in turn and proposes specific legislative amendments for the Committee’s consideration.

9.1 Functional Capacity: Proposed Section 9B

The introduction of a statutory definition of functional capacity is a welcome reform insofar as it provides a common framework for assessment. The definition, in substance, identifies a person’s ability to undertake an activity without assistance from other people, assistive technology, or modifications, assessed by reference to the intrinsic impairment and excluding environmental and personal circumstances.

The exclusion of environmental and personal circumstances from the assessment of functional capacity is important and must be applied consistently. For a child with Level 3 Autism, that exclusion prevents the Agency from treating the presence of intensive paid supports as evidence

Submission 1693

Profound Autism Network

that the child’s functional capacity is adequate. The intrinsic impairment remains regardless of the

environmental scaffolding currently in place. This point is not merely interpretive. It is the difference

between an accurate assessment of support need and a circular assessment that uses the existence

of funded supports to deny the need for them.

However, the definition will only protect this cohort if the category A NDIS Rules made under proposed section 9B(3) are drafted with sufficient specificity. Rules that rely on standardised assessment instruments not validated for non-verbal, profoundly impaired, and high-risk participants will systematically underestimate support needs. The validation status of assessment instruments for this cohort is not a peripheral technical concern. It is a prerequisite for accurate and lawful assessment.

Proposed Amendment. The category A NDIS Rules made under proposed section 9B(3)

s should be required to:

• (a) prescribe specific classifications or functional thresholds for profound neurodevelopmental disability, including Level 3 Autism Spectrum Disorder;

• (b) mandate that assessors treat the following as mandatory relevant considerations: non- verbal or minimally verbal communication profile; absence of danger awareness or inability to respond to safety instructions; documented absconding, water-seeking, climbing, or other high-risk behaviours; requirement for constant one-to-one or higher supervision to maintain safety; and documented need for regulated restrictive practices or specialist behaviour support; and

• (c) provide that a clinical determination that a child meets DSM-5 Level 3 criteria, made by a practitioner with relevant expertise, is sufficient to establish substantially reduced functional capacity across multiple domains without requiring further standardised testing where such testing cannot be validly administered.

Failure to embed these criteria in the Rules will recreate the inconsistency and inequity that the NDIS Review identified as a systemic failure of the current Scheme.

9.2 Permanence: The “All Appropriate Treatment” Test

The amendment clarifying the meaning of permanence by reference to “all appropriate treatment” is consistent with Recommendation 3 of the NDIS Review and with the approach confirmed by the Federal Court in National Disability Insurance Agency v Davis FCA 1215. The submission supports the underlying intent.

Submission 1693

Profound Autism Network

For Level 3 Autism, the position is unambiguous as a matter of clinical science. The impairment is permanent and lifelong (American Psychiatric Association, 2013). Evidence-based interventions, including behaviour support, augmentative and alternative communication systems, environmental modification, and pharmacological management of co-occurring conditions, improve safety, communication, and quality of life. They do not alter the underlying profound disability, and they do not eliminate the need for very substantial ongoing support. There is no curative treatment for Level 3 Autism, and no credible clinical authority suggests otherwise.

The risk in the proposed formulation is one of interpretation. If “all appropriate treatment” is construed by decision-makers as requiring families to pursue every available intervention before permanence is accepted, the provision will impose an impossible and clinically unsound burden and will delay or deny access to lifelong supports for children who manifestly require them.

Proposed Amendment.

The NDIS Rules or legislative instrument defining “all appropriate treatment” should expressly provide that, for autism spectrum disorder:

(a) “appropriate treatment” means interventions that are clinically indicated to maximise functioning, communication, and safety, and to minimise harm, having regard to the individual’s diagnosis, severity, and clinical profile;

(b) it does not require pursuit of interventions that are not clinically indicated, are experimental, are contrary to clinical consensus for the relevant presentation, or impose unreasonable burden on the participant or their family; and

(c) the permanence test is satisfied where the impairment is lifelong, as recognised in DSM- 5 and in the clinical literature, and substantially reduces functional capacity even after all appropriate treatment has been received.

Any interpretation of “all appropriate treatment” that does not reflect these principles would be inconsistent with the Convention on the Rights of Persons with Disabilities (United Nations, 2006), the objects of the Act, and the established clinical understanding of Level 3 Autism.

9.3 Eligibility Based on Other Service Systems

This is the provision that carries the most direct risk of disproportionate and harmful impact on the profound autism cohort. The Bill tightens the eligibility framework where a person’s needs “can reasonably be met” by other service systems, including education, health, and community services.

Submission 1693

Profound Autism Network

The submission puts this proposition directly to the Committee: for children with Level 3 Autism, profound adaptive impairment, minimal or absent functional communication, and high-risk behavioural profiles, no other service system can reasonably meet their needs, and none should be expected to.

The reasons are structural and documented. Mainstream early childhood education settings and schools do not have the funding, staffing ratios, specialist training, or legal authority to implement regulated restrictive practices or to provide the level of continuous one-to-one supervision that this cohort requires for basic safety. Child and family services and out-of-home care systems are, as coronial and parliamentary inquiries have consistently found, not adequately resourced to provide safe environments for children with the most complex needs. Health systems provide episodic acute and subacute care, not the continuous daily living supports that constitute the core of what this cohort requires. Community-based early childhood intervention programs are designed for mild to moderate developmental presentations and are explicitly not appropriate for Level 3 Autism.

Applying the “can reasonably be met by other service systems” test to this cohort without legislative safeguards repeats the category error that has contributed to documented adverse outcomes, including deaths, family breakdown, and relinquishment into out-of-home care (see Section 3).

Proposed Amendment

The Bill should be amended to insert a new subsection, or a note with interpretive force, in the relevant access and eligibility provisions stating that, for the purposes of determining whether needs can reasonably be met by other service systems, a person whose impairments meet DSM-5 criteria for Level 3 Autism Spectrum Disorder, or who has been assessed by a clinician with relevant expertise as having equivalent severe and profound needs, is to be taken as requiring supports that can only be delivered under the Scheme. Diversion to other service systems does not constitute a reasonable alternative for this cohort.

9.4 Planning, Reassessment, and Reasonable and Necessary Supports

The submission supports sensible controls on unscheduled reassessments and measures to improve consistency in support determinations. Both are legitimate objectives and both were identified as priorities by the NDIS Review.

Three specific concerns arise for this cohort, however.

First, children with Level 3 Autism frequently experience genuine, sudden, and significant changes in support needs as a result of carer breakdown, behavioural escalation, medical

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Profound Autism Network

comorbidities, and transitions between settings. The 90-day decision period introduced by proposed

section 48A and the new conditions governing urgent variation must not create barriers to timely

response in circumstances where delay carries a risk of serious harm. The provisions should

expressly preserve the capacity for urgent variation where a participant’s safety is at risk.

  Secondly, any support determinations or funding reductions for specified groups must not

reduce below clinically required levels the intensive supports, including one-to-one supervision and

specialist behaviour support, that constitute minimum safety thresholds for this cohort. A reduction

in funding that takes a child below the level of support required to maintain basic safety is not a

contribution to scheme sustainability. It is the creation of a foreseeable and preventable risk of

serious harm.

    Thirdly, the principles governing reasonable and necessary supports under section 33 must

continue to recognise that for a participant with Level 3 Autism and a high-risk safety profile, the

practical alternative to adequate funded support is not cost containment. It is family collapse, relinquishment into out-of-home care, serious injury, or death. Those are also costs. They fall on participants, families, and other public systems, and they are not reflected in scheme expenditure figures.

9.5 Automated Decision-Making: Schedule 3, Part 2

  The submission supports strong integrity measures and the use of technology to improve

efficiency and consistency in lower-complexity decisions. Those are legitimate and appropriate

objectives.

  Complex cases involving participants with Level 3 Autism are not appropriate candidates for

automated decision-making. These cases routinely involve multiple medical and psychiatric comorbidities, fluctuating and high-risk behaviours, family trauma histories, multi-agency involvement, complex living and supervision arrangements, and competing clinical opinions. The consequences of an incorrect access, planning, or funding decision for a participant in this cohort are not administrative inconveniences that can be corrected through review. They carry a risk of serious harm or death in the period before any error is identified and remedied.

   Procedural fairness also requires that decisions with consequences of this magnitude be

made by a person who can be held accountable for the reasoning and who can receive and weigh the full range of relevant evidence, including clinical observation, behaviour support plans, coronial findings and family evidence. Automated processes cannot perform that function.

Submission 1693

Profound Autism Network

Proposed Amendment. The legislative instrument or operating procedures governing automated decision-making under Schedule 3, Part 2, should expressly exclude from automated processing, and require mandatory specialist human review for, any decision concerning a participant or prospective participant with a diagnosed or clinically suspected Level 3 Autism presentation, or where the participant’s records disclose absconding, water-seeking, self-injurious behaviour requiring medical intervention, or a requirement for two-to-one or constant supervision.

9.6 Pricing Determinations: Schedule 3, Part 1

Pricing determinations must reflect the actual and verified cost of the supports required by this cohort. The supports in question, including specialist behaviour support practitioners, high-intensity supported independent living with one-to-one or two-to-one staffing ratios, and crisis response capacity, are not susceptible to price compression without directly affecting the quality, continuity, and safety of care.

Where pricing determinations set rates that do not cover the actual cost of delivering these supports, the consequence is not saving that accrues to participants. It is a transfer of cost onto families, hospitals, emergency services, and the justice system, in circumstances where the human cost of that transfer is severe. The integrity of the Scheme’s sustainability case depends on accounting for those downstream costs, not merely for expenditure within the Scheme’s own budget.

9.7 Proactive Safeguards for Underrepresented Cohorts and Whole Person Impairment Assessment

The Bill’s evidence hierarchy will not operate neutrally across the full diversity of NDIS participants. Its impact will fall most heavily on cohorts for whom published, peer-reviewed, and generalisable research is scarce or absent, not because their needs are less real or less urgent, but because they have been systematically excluded from the research that the hierarchy privileges.

The cohorts most directly affected include First Nations autistic people, for whom the intersection of disability, cultural identity, and systemic disadvantage produces support needs that are rarely addressed in mainstream intervention research; culturally and linguistically diverse participants, who face additional barriers of language, cultural mistrust, and limited access to culturally safe assessment processes; non-verbal and minimally speaking participants, who cannot self-advocate, cannot report pain or distress, and whose support needs are least likely to be accurately captured by standardised assessment instruments; and participants with intellectual disability and high-risk behavioural profiles, including documented elopement, water-seeking, self-

Submission 1693

Profound Autism Network

injury, choking, pica, and catatonia, who are over-represented in the coronial record of preventable deaths and under-represented in the research the hierarchy will elevate to greatest weight.

The Bill contains no proactive mechanism to identify these cohorts, to adjust the evidentiary framework for decisions affecting them, or to ensure that the absence of generalisable research does not operate as a structural ground for denying or capping supports. That omission is not consistent with Australia’s obligations under Articles 2, 5, and 21 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006), which require the State to take proactive measures to ensure equality, to combat indirect discrimination, and to ensure that people with disability can access information and services on an equal basis with others.

• Recommendation. The Committee should recommend insertion of new section 3C (Proactive safeguards for underrepresented cohorts and whole person impairment assessment), the full text of which is set out in Section 10 of this submission. The provision would require the CEO to proactively identify participants belonging to underrepresented cohorts, to apply whole person impairment assessment in decisions affecting them, and to give primary weight to individualised clinical and lived experience evidence where generalisable research is limited or absent.

The whole person impairment assessment requirement operationalises the “like circumstances” argument made throughout this submission. It requires the decision-maker to consider the compounding effect of multiple diagnoses and the interaction between impairments, which is directly relevant to the Level 3 cohort where autism, intellectual disability, communication impairment, and high-risk behavioural profile interact to produce a support need that exceeds what any single diagnosis would suggest in isolation.

The First Nations and culturally and linguistically diverse cohorts warrant specific acknowledgement. The barriers faced by these communities in accessing the Scheme are not adequately addressed by the Bill’s current provisions. Cultural safety in assessment and decision-making is not a peripheral matter. It is a precondition for accurate assessment and for the exercise of genuine choice and control. Any workforce capability framework developed under proposed section 118E should specifically address cultural competency requirements for decisions affecting First Nations and culturally and linguistically diverse participants.

The Bill can and should give statutory effect to the principle that the absence of research about a person is not evidence about that person. For the cohorts identified in this section, that principle is not merely a matter of administrative fairness. It is a matter of survival.

Submission 1693

Profound Autism Network

9.8 The State’s Corresponding Obligation: Carer Sustainability as a Statutory Object

The Argument

The Bill proceeds on an assumption that is not stated but is embedded in its structure: that families and carers will continue to absorb the primary burden of caring for children and adults with profound disability, and that the Scheme’s role is to supplement rather than to sustain that caregiving. That assumption has a limit, and the coronial record documents what happens when that limit is reached (see Section 3, Table 2).

Caring for a non-verbal child with Level 3 Autism, absent safety awareness, documented elopement and water-seeking behaviour, self-injurious behaviour, and a requirement for constant one-to-one or higher supervision is not a task with defined hours, a rotation system, a welfare check, or a mechanism for stepping down from duty when the psychological and physical cost becomes unsustainable. It is a continuous, high-stakes, life-and-death responsibility with no equivalent in any paid profession, and no recognition in the NDIS’s current operating model of the point at which continuing to perform it becomes clinically unsafe.

The closest professional analogy is a first responder or emergency worker who is required to remain on active duty, managing life-and-death risk, without rotation, without relief, and without any mechanism for reporting that the duty has become incompatible with safe performance. No responsible organisation would permit that. Every jurisdiction that requires workers to carry and use lethal force imposes mandatory welfare checks, rotation systems, and psychological support obligations precisely because the cost of requiring a person to remain on duty beyond their sustainable capacity is not borne by the person alone. It is borne by everyone in their care.

The NDIS does not impose equivalent obligations on itself. Its current Escalation and Prioritisation Matrix treats carer psychological deterioration as one administrative risk category among ten (see Section 5). It does not trigger mandatory relief. It does not require immediate escalation. It does not treat the documented clinical inability of a carer to continue safely as an emergency requiring the same urgency as a participant’s acute medical crisis.

The coronial record now contains cases in which parents of non-verbal, profoundly autistic children have killed their child and in some cases themselves, in circumstances of total carer collapse and total system failure. These are not inexplicable tragedies. They are the foreseeable and documented outcome of a system that demanded caregiving continue in circumstances where no

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Profound Autism Network

responsible system would permit it to continue, and that failed to provide the relief that would have made a different outcome possible. Four such children have been killed by a parent in 2026 alone.

  The Parliament must confront this directly. The State cannot create a scheme that is the sole national mechanism for meeting the support needs of people with profound disability, require families to be the primary providers of that support, and then legislate rules that make the intensity of funded relief harder to obtain, while providing no mechanism for identifying and responding to the point at which carer collapse becomes a safeguarding emergency. That is not a sustainable model. It is a model that has already produced preventable deaths and will produce more.

 Recommendation. The Committee should recommend insertion of new section 3D (Carer sustainability as a statutory object and corresponding State obligation), the full text of which is set out in Section 10 of this submission. The provision would establish carer sustainability as a core object of the Act, create defined indicators that trigger immediate safeguarding obligations, and prohibit the Agency from requiring carers to continue providing care in circumstances where clinical assessment confirms that continuation is unsafe.

  The proposed provision does not replace parental or carer responsibility. It gives statutory recognition to the principle that State responsibility and carer responsibility are correlative: where the State has created a scheme that is the sole mechanism for meeting profound disability support needs, and where a family is providing care that would otherwise be the State's obligation to fund, the State's obligation to provide relief when that care becomes unsustainable is not a matter of generosity. It is a matter of the Act's own objects, and of Australia's obligations under Articles 19 and 23 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006).

CONSOLIDATED PROPOSED AMENDMENTS

  The Committee should recommend that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 be amended to insert the following provisions into the National Disability Insurance Scheme Act 2013 (Cth). These amendments are necessary to ensure that the Bill's legitimate sustainability objectives are pursued in a manner compatible with Australia's human rights obligations under the Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the International Covenant on Civil and Political Rights (United Nations, 1966), and with the founding purpose of the Scheme.

Amendment 1: Insert New Section 3B — Human Rights Paramount Consideration

Insert after section 3:

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Profound Autism Network

3B Human rights paramount consideration

(1) In exercising any power or performing any function under this Act, the CEO and the

Agency must:

(a) give primary consideration to Australia’s obligations under the Convention on the Rights of Persons with Disabilities, with particular regard to Articles 3, 7, 10, 14, 15, 19, 23, 25 and 28; and

(b) ensure that no decision is made that would expose a participant to a foreseeable risk of serious harm or death where that risk could be mitigated by the provision of reasonable and necessary supports; and

(c) in respect of any participant who meets DSM-5 criteria for Level 3 Autism Spectrum Disorder, or who has minimal or no functional communication, treat the best interests of that participant as a primary consideration, consistent with Article 7 of the Convention and the principle that rights-holders with profound disability must not bear the administrative and evidentiary burden of establishing their own entitlement to life-preserving supports.

Amendment 2: Insert New Section 3C — Proactive Safeguards for Underrepresented Cohorts and Whole Person Impairment Assessment

Insert after section 3B:

3C Proactive safeguards for underrepresented cohorts and whole person impairment assessment

(1) In performing any function or exercising any power under this Act, the CEO and the

Agency must proactively identify participants who belong to underrepresented cohorts for the purposes of the evidence hierarchy, including:

(a) First Nations participants;

(b) culturally and linguistically diverse participants;

(c) non-verbal or minimally speaking participants;

(d) participants with intellectual disability; and

(e) participants exhibiting high-risk behaviours including elopement, water-seeking, self- injurious behaviour, choking, pica, or catatonia.

(2) In making any decision under section 34 or under the NDIS (Supports for Participants) Rules in respect of a participant identified under subsection (1), the CEO must apply a whole person impairment assessment that evaluates the participant’s total functional capacity, support needs, risk profile, communication profile, and environmental and cultural factors, rather than relying solely on diagnosis or on the availability of generalisable population-level research.

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Profound Autism Network

(3) For the purposes of subsection (2), whole person impairment assessment means an

assessment that:

• considers all impairments affecting the participant, whether each impairment individually meets the access threshold;
• considers the interaction between impairments and the compounding effect of multiple diagnoses on functional capacity and risk;
• is conducted or reviewed by a clinician with demonstrated expertise in the relevant disability profile; and
• gives primary weight to direct clinical observation, treating practitioner evidence, and family and carer evidence where standardised assessment instruments cannot be validly administered.

(4) Where published, peer-reviewed and generalisable research is limited or absent for a participant identified under subsection (1), the CEO must not treat that absence as a ground for refusing, capping, or reducing supports, and must instead give primary weight to the individualised clinical, functional, and lived experience evidence most relevant to the participant’s circumstances.

(5) Any decision that reduces, caps, or denies supports for a participant identified under subsection (1) on the basis that generalisable research is absent or limited must include a written statement explaining why individualised clinical and functional evidence does not establish that the support is likely to be effective and beneficial for that participant in their specific circumstances. That statement is subject to merits review by the Administrative Review Tribunal.

Amendment 3: Insert New Section 3D — Carer Sustainability as a Statutory Object and Corresponding State Obligation

Insert after section 3C:

3D Carer sustainability as a statutory object and corresponding State obligation

(1) The prevention of carer collapse and the preservation of family caregiving capacity for participants with profound disability is a core object of this Act.

(2) In administering this Act, the CEO and the Agency must treat the following as creating an immediate safeguarding obligation requiring urgent escalation and funded response:

• a carer of a participant with Level 3 Autism or equivalent profound disability reporting or being assessed as experiencing severe psychological distress, burnout, compassion fatigue, or a clinical condition that impairs safe caregiving;

Submission 1693

Profound Autism Network

(b) medical or clinical advice that sustained caregiving without respite is contraindicated for the carer’s physical or psychological health;

(c) a carer reporting that they cannot safely continue providing care without immediate additional support; or

d(d) any indicator in the participant’s plan or records that informal caregiving is the sole or primary mechanism preventing serious harm to the participant.

(3) Where any indicator in subsection (2) is identified, the CEO must, as a matter of priority:

(a) immediately assess the participant’s support needs on the basis that informal caregiving cannot be assumed to continue at its current level;

(b) fund the formal supports necessary to maintain the participant’s safety and wellbeing without reliance on the carer’s continued capacity; and

(c) refer the carer to appropriate psychological, medical, and peer support services.

(4) The Agency must not require a carer to continue providing care in circumstances where a treating clinician or the carer themselves has assessed that continuing is clinically unsafe, sustainable, or likely to result in harm to the participant, the carer, or others.

(5) Any decision that reduces, caps, or denies supports for a participant with a High-Risk or Extreme-Risk classification under the Severe and Profound Disability Risk Escalation Tool where carer collapse is identified as a contributing risk factor must include a written statement explaining why the reduction, cap, or denial does not create a foreseeable risk of harm to the participant. That statement is subject to merits review by the Administrative Review Tribunal.

Amendment 4: Insert New Section 34A — Statutory Duty to Identify and Mitigate Risk of Foreseeable Serious Harm or Death

Insert after section 34:

34A Statutory duty to identify and mitigate risk of foreseeable serious harm or death (1) The CEO and the Agency must, in all decisions affecting access, planning, funding or review, identify and mitigate any foreseeable risk of serious harm or death to a participant.

    (2) For the purposes of subsection (1), the Agency must apply the Severe and Profound

Disability Risk Escalation Tool (or any successor instrument approved by the Minister following independent clinical review) as the mandatory risk triage instrument for participants presenting with profound disability or equivalent high-risk profiles.

    (3) Where a participant is assessed as HIGH, EXTREME or CHANGE OF GOAL / CRISIS

TRANSITION under the Tool, or where red-flag behaviours including absconding, water-seeking,

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Profound Autism Network

choking, pica or self-injury requiring medical intervention are recorded, the Agency must not reduce, cap or deny supports without mandatory multidisciplinary clinical review and documented consideration of the risk of serious harm or death.

(4) No reduction, denial or delay in funding supports is permitted for a participant assessed as HIGH, EXTREME, or CHANGE OF GOAL / CRISIS TRANSITION where such supports are necessary to mitigate an identified risk of serious harm or death.

Amendment 5: Insert New Section 34B — Right to Raise Concerns and Trigger Mandatory Escalation (RAISE IT Framework)

Insert after section 34A:

34B Right to raise concerns and trigger mandatory escalation

(1) A participant, or a person authorised to act on their behalf (including a carer, family member, or advocate), may at any time give written or oral notice to the Agency that they reasonably believe the participant is at risk of serious imminent harm or death.

(2) Upon receipt of such notice, the CEO must:

(a) immediately escalate the matter to a senior clinical governance officer; (b) within a time period specified by legislative instrument, having regard to the urgency of the identified risk, conduct or arrange a multidisciplinary risk assessment; (c) ensure that appropriate interim supports are put in place to mitigate the identified risk; and d) provide written reasons to the notifier within a time period specified by legislative instrument outlining the action taken.

(3) Failure by the Agency to comply with subsection (2) constitutes a reviewable decision under Part 6 of this Act and may be the subject of a complaint to the NDIS Quality and Safeguards Commission and the Commonwealth Ombudsman.

(4) No participant or carer who exercises rights under this section in good faith shall be subject to any detriment, including reduction or withdrawal of supports, because of having raised concerns.

Amendment 6: Amend Proposed Evidence Hierarchy Provision — Exclusion for Level 3 and Equivalent Profound Disability Cohorts

In the evidence hierarchy provision (proposed section 33A or equivalent), insert new subsection:

   (3A) Subsection (3) does not apply, and the CEO must instead give primary weight to

individualised clinical and functional evidence, including evidence from treating allied health

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Profound Autism Network

practitioners, behaviour support practitioners, paediatricians, and relevant specialists, where the

participant:

    (a) meets DSM-5 or equivalent diagnostic criteria for Level 3 Autism Spectrum Disorder; or

    (b) has minimal or no functional communication; or

    (c) has a documented history of elopement, attraction to water without awareness of

drowning risk, choking or dysphagia risk, self-injurious or other high-risk behaviour, or requires 2:1 or constant supervision to maintain safety.

Amendment 7: Amend Effective and Beneficial Test — Explicit Obligation to Assess Risk from Under-Support In the “effective and beneficial” provision (proposed new section 34(1) or equivalent), insert new paragraph:

    (1)(da) In determining whether a support is likely to be effective and beneficial for a

participant who meets DSM-5 criteria for Level 3 Autism Spectrum Disorder, or who presents with equivalent profound impairment with minimal or no functional speech and a high-risk behavioural profile, the CEO must give primary weight to:

        (i) individualised functional capacity assessments and risk assessments conducted by

clinicians with demonstrated expertise in severe and profound autism;

        (ii) evidence of the participant's actual functional gains, regression or safety incidents under

current or prior support levels; and

        (iii) coronial, child-protection or NDIS Quality and Safeguards Commission findings

concerning the participant or children in like circumstances,

and must not treat the absence of subgroup-stratified data in a general population meta- analysis as determinative or as outweighing the matters identified in subparagraphs (i) to (iii).

Amendment 8: Intensity Caps — Independent Review and Mandatory Risk Assessment Amend the intensity cap provisions (proposed sections 33(2EA) and 33(2EB) or equivalent) to insert:

    (3A) Research may not be classified as "generalisable" for the purposes of a legislative

instrument under subsection (2EA) or (2EB) unless reviewed and approved for that classification by the Independent Research Advisory Council on Disability Evidence and Practice established under section 118F.

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Profound Autism Network

(3B) Before giving effect to any maximum intensity determination under subsection (2EA) or

(2EB) in respect of a participant who meets the criteria in section 33A(3A), the CEO must prepare and retain on file a written assessment of:

• (i) the risk of harm to the participant if supports are set at or below the proposed maximum;

• (ii) whether individualised clinical and functional evidence supports a higher level of support than the maximum intensity determination would otherwise permit.

Amendment 9: Functional Capacity Rules — Mandatory Considerations for Level 3 Autism

The category A NDIS Rules made under proposed section 9B(3) must:

(a) prescribe specific classifications or functional thresholds for profound neurodevelopmental disability, including Level 3 Autism Spectrum Disorder;

(b) mandate that assessors treat the following as mandatory relevant considerations: non-verbal or minimally verbal communication profile; absence of danger awareness or inability to respond to safety instructions; documented absconding, water-seeking, climbing, or other high-risk behaviours; requirement for constant one-to-one or higher supervision to maintain safety; and documented need for regulated restrictive practices or specialist behaviour support; and

(c) provide that a clinical determination that a child meets DSM-5 Level 3 criteria, made by a practitioner with relevant expertise, is sufficient to establish substantially reduced functional capacity across multiple domains without requiring further standardised testing where such testing cannot be validly administered.

The NDIS Rules or legislative instrument defining “all appropriate treatment” for the purposes of the permanence test must expressly provide that, for autism spectrum disorder:

(a) “appropriate treatment” means interventions that are clinically indicated to maximise functioning, communication, and safety, and to minimise harm, having regard to the individual’s diagnosis, severity, and clinical profile;

(b) it does not require pursuit of interventions that are not clinically indicated, are experimental, are contrary to clinical consensus for the relevant presentation, or impose unreasonable burden on the participant or their family; and

(c) the permanence test is satisfied where the impairment is lifelong, as recognised in DSM-5 and in the clinical literature, and substantially reduces functional capacity even after all appropriate treatment has been received

Submission 1693

Profound Autism Network

Amendment 11: Other Service Systems — Statutory Exemption for Level 3 Autism

Insert a new subsection or interpretive note in the relevant access and eligibility provisions stating:

For the purposes of determining whether needs can reasonably be met by other service systems, a person whose impairments meet DSM-5 criteria for Level 3 Autism Spectrum Disorder, or who has been assessed by a clinician with relevant expertise as having equivalent severe and profound needs, is to be taken as requiring supports that can only be delivered under the Scheme.

Diversion to other service systems does not constitute a reasonable alternative for this cohort.

Amendment 12: Automated Decision-Making — Exclusion for High-Risk Participants

The legislative instrument or operating procedures governing automated decision-making under Schedule 3, Part 2, must expressly exclude from automated processing, and require mandatory specialist human review for, any decision concerning a participant or prospective participant with a diagnosed or clinically suspected Level 3 Autism presentation, or where the participant’s records disclose absconding, water-seeking, self-injurious behaviour requiring medical intervention, or a requirement for two-to-one or constant supervision.

Amendment 13: NDIS Quality and Safeguards Commission — Enhanced Oversight of Participant Safety

Insert after section 181:

181A Functions in relation to participant safety

The Commission has the following additional functions:

(a) to audit the Agency’s compliance with section 34A (statutory duty to identify and mitigate risk of foreseeable serious harm or death);

(b) to investigate systemic failures in risk identification and escalation following any participant death or critical incident involving a participant with Level 3 Autism or equivalent profound disability; and

(c) to report publicly, at least annually, on the Agency’s performance in protecting participants assessed as HIGH-RISK, EXTREME-RISK or CHANGE OF GOAL / CRISIS TRANSITION under the Severe and Profound Disability Risk Escalation Tool.

Amendment 14: Independent Research Advisory Council on Disability Evidence and Practice

Insert after section 118E:

Submission 1693

Profound Autism Network

Independent Research Advisory Council on Disability Evidence and Practice

(1) There is established an Independent Research Advisory Council on Disability Evidence and Practice.

(2) The Council has the following functions:

(a) to review the generalisability and external validity of research relied upon by the Agency in access, planning, and support determination decisions, with particular attention to cohorts systematically excluded from intervention trials;

(b) to identify gaps in the evidence base for participants with profound and complex disability, including non-verbal and minimally speaking participants, participants with high-risk behavioural profiles, First Nations participants, and culturally and linguistically diverse participants;

(c) to provide binding advice to the CEO on the appropriate weighting of published research, individualised clinical evidence, and lived experience evidence in decisions affecting underrepresented cohorts;

(d) to commission and oversee research into severe and profound impairment support needs, inclucling longitudinal studies of intensive support outcomes for Level 3 Autism and equivalent presentations; and

(e) to report publicly and to Parliament on the Agency’s compliance with evidence-based practice principles, including compliance with the requirement to give primary weight to individualised clical evidence where generalisable research does not represent the participant’s circumstances.

(3) The Council must be constituted with equal representation from:

(a) academic researchers with demonstrated expertise in disability, neurodevelopment, and evidence synthesis;

(b) practising clinicians with expertise in severe and profound impairment, inclucing behaviour support practitioners and allied health professionals; and

(c) people with lived experience of disability and family carers of people with profound disability, with specific representation from minimally verbal and non-speaking autistic people, carers of people with Level 3 Autism or equivalent severe and profound impairment, First Nations people with disability or family members of First Nations participants, and culturally and linguistically diverse participants and carers.

(4) The Council’s advice to the CEO on the interpretation and application of research evidence in individual cases or for specific cohorts is binding, subject to merits review by the Administrative Review Tribunal on the ground that the advice was based on a material error of fact or law.

Submission 1693

Profound Autism Network

(5) The Council must publish an annual report detailing the Agency’s reliance on generalisable research for cohorts not represented in that research, identifying decisions in which research was applied beyond its validated scope, and recommending systemic reforms to the Agency’s evidence assessment practices. That report must be tabled in both Houses of Parliament and referred to the Joint Standing Committee on the National Disability Insurance Scheme for inquiry and report.

Amendment 15: National Participant Death Review Process

Insert new section requiring:

118G National Participant Death Review Process (1) The Minister must, by legislative instrument, establish a National Participant Death Review Process to ensure independent oversight and public reporting on all deaths of NDIS participants.

(2) The instrument must provide for:

(a) mandatory reporting to the NDIS Quality and Safeguards Commission of all participant deaths within 24 hours of the death coming to the attention of a registered NDIS provider or the Agency;

(b) mandatory referral to the relevant coroner of all deaths occurring while a participant is in receipt of NDIS-funded supports, or within 12 months following the withdrawal or substantial reduction of such supports;

(c) independent clinical review of all deaths involving participants with Level 3 Autism, profound disability, or high-risk behavioural profiles, to determine whether inadequate supports, support reductions, or systemic failures contributed to the death; and

(d) mandatory public reporting, at least annually, of aggregated findings, systemic recommendations, and the Agency's response to those recommendations.

(3) The Commission must maintain a public register of all participant deaths involving individuals with profound disability, including deidentified case summaries, coronial findings, and identified systemic issues.

11. IMPLEMENTATION RECOMMENDATIONS: BEYOND THE BILL TEXT

11.1 The Limits of Legislative Reform Alone

Legislative amendment is a necessary but not sufficient condition for the protection of participants with Level 3 Autism and equivalent profound disability. The systemic failures

Submission 1693

Profound Autism Network

documented in the coronial record (Sections 3 and 4), in Administrative Review Tribunal proceedings, and in the experience of families navigating the Scheme are not solely the product of statutory drafting. They reflect an operating model, a decision-making culture, and a workforce capability that are not currently configured to identify, assess, or respond adequately to the safeguarding risks facing this cohort.

  The Committee should therefore consider the following implementation recommendations in addition to the legislative amendments proposed in Section 10. These recommendations are directed at the executive and administrative dimensions of the problem. They require action by the Government and the Agency, not only by the Parliament. However, the Committee has the standing and the responsibility  to recommend them, and to indicate that  legislative scrutiny of  their implementation will continue.

Operational Recommendations

Recommendation 1: Independent Overhaul of the NDIA Risk Triage Operating Model

  The Agency's current risk triage framework does not adequately identify, escalate, or respond to participants whose disability profiles place them at immediate risk of serious harm or death  if supports are insufficient or disrupted. The pattern of deaths documented in the coronial record, and the pattern of decisions documented in Administrative Review Tribunal proceedings, are consistent with a triage model oriented primarily toward financial sustainability rather than participant safety.

  The Committee should recommend that the Government commission an independent operational review of the NDIA's risk identification, triage, and escalation framework within 90 days of the Bill's commencement. That review should be conducted by persons with expertise in complex insurance risk modelling, clinical governance in high-risk disability services, and coronial and child protection practice. It should specifically address:

• the criteria by which participants with Level 3 Autism and equivalent high-risk profiles are identified and escalated within the Agency’s operational systems;
• the adequacy of current processes for assessing and documenting the risk of harm from under-support; and
• the mechanisms by which treating clinician and family evidence is received and weighted in operational decisions.

Submission 1693

Profound Autism Network

The outcomes of that review should be publicly reported and should be accompanied by a timetabled implementation plan. The review is not a substitute for the legislative amendments proposed in Section 10. It is a complement to them.

Recommendation 2: National NDIS Participant Death Review Committee

There is currently no systematic, independent, and publicly transparent mechanism for reviewing the deaths of NDIS participants and for identifying the extent to which inadequate or disrupted NDIS supports contributed to those deaths. Coronial processes are valuable but are episodic, resource-constrained, and not designed to identify systemic patterns across the Scheme as a whole.

The Committee should recommend the establishment of a National NDIS Participant Death Review Committee with the following features:

• Composition and Independence: The Committee should have independent statutory standing, with membership drawn from clinical, coronial, disability advocacy, First Nations, and family lived-experience backgrounds, including substantial representation from families of participants who have died.

• Functions: The Committee should have the function of reviewing all deaths of NDIS participants where the adequacy of funded supports is a live question, of identifying systemic patterns in those deaths, and of making recommendations to the Agency, the Minister, and the Parliament for operational and legislative reform.

• Public Reporting: Its findings should be publicly reported on an annual basis. The existence of such a Committee would give practical effect to the positive obligation under Article 10 of the Convention on the Rights of Persons with Disabilities (United Nations, 2006) to take reasonable steps to protect life. It would also provide the Parliament and the community with an evidence base that currently does not exist for assessing whether the Scheme is meeting its most fundamental obligation to its most vulnerable participants.

Recommendation 3: Mandatory Annual Public Reporting on Participant Deaths and Critical Incidents

The Agency does not currently publish systematic data on participant deaths or on critical incidents involving NDIS participants. Without that data, it is not possible to assess whether the Scheme’s policies and funding decisions are contributing to preventable harm, or to hold the Agency publicly accountable for outcomes in this domain.

Submission 1693

Profound Autism Network

The Committee should recommend that the Government amend the reporting requirements applicable to the Agency to require annual public reporting of:

• the number of NDIS participant deaths, disaggregated by age, diagnosis, support needs classification, and the adequacy of funded supports at the time of death;

• the number of critical incidents involving NDIS participants, similarly disaggregated; and

• the actions taken by the Agency in response to the findings of the National NDIS Participant Death Review Committee.

This reporting obligation would not impose an unreasonable administrative burden. The Agency already holds much of the relevant data. The obstacle is disclosure, not collection. Transparent public reporting is a minimum requirement of a rights-based social insurance scheme accountable to the Parliament and to the community it serves.

Recommendation 4: Workforce Capability and Clinical Governance

The Agency’s workforce, including but not limited to: planners, executive team, researchers, and operational decision-makers, does not currently have consistent or adequate training in the clinical presentation, safeguarding risks, and evidentiary requirements relevant to participants with Level 3 Autism and equivalent profound disability. Decisions affecting this cohort are frequently made by staff who have not received specialist training in severe and profound neurodevelopmental disability and who are not supported by accessible clinical governance frameworks.

The Committee should recommend that the Government require the Agency to develop and implement, within 12 months of the Bill’s commencement, a mandatory specialist training and clinical governance framework for all staff making or reviewing decisions affecting participants with Level 3 Autism or equivalent high-risk presentations. That framework should be developed in partnership with specialist clinicians in severe and profound autism and disability, and with families with lived experience, including representation from underrepresented areas such as severe and profound autism, non-verbal autism, severe intellectual disability, culturally and linguistically diverse communities, and First Nations communities.

The full legislative mechanism for this recommendation is set out in Section 10, Amendment 14 (proposed section 118E: Workforce Capability Framework).

Recommendation 5: Independent Research Advisory Council Composition and Evidence Framework

Submission 1693

Profound Autism Network

As proposed in Section 10, Amendment 14 (proposed section 118F), the Independent Research Advisory Council on Disability Evidence and Practice will play a central role in determining what research qualifies as generalisable for the purposes of the evidence hierarchy. The integrity of that function depends entirely on the Council’s composition and independence.

The Committee should recommend that the Council include substantial representation from individuals with lived experience of profound and complex disability, including minimally verbal and non-speaking participants and their primary carers; clinicians with demonstrated expertise in severe and profound autism; researchers with expertise in external validity and research methodology; and representatives of culturally and linguistically diverse and First Nations communities. The Council must be genuinely independent of the Agency, and its classification decisions must be publicly available.

The Committee should further recommend that the Council be required, within 18 months of commencement, to publish a specific evidence framework for severe and profound autism that identifies the categories of evidence to be treated as best available evidence for this cohort and the methodology by which participant-specific clinical and functional evidence will be assessed against population-level research.

11.3 Administrative Efficiency and Governance

11.3.1 Electronic Communication and Reduction of Paper Waste

Families of NDIS participants, including families of children with Level 3 Autism, report routinely receiving between ten and forty physical copies of NDIS plans, plan variations, and supporting correspondence. There is no operational, clinical, or legal justification for this practice in 2026. The Agency maintains a participant portal capable of secure electronic document delivery. The continuation of large-scale physical document production and postage represents an identifiable and unnecessary draw on scheme administrative resources.

The Committee should recommend the insertion of a new section 118A into the National Disability Insurance Scheme Act 2013 (Cth) requiring that every participant, or their nominee, has the right to elect to receive all NDIS correspondence, plans, plan variations, and supporting documents by secure electronic means, and that the Agency must publish annual data on total expenditure on physical document production, printing, paper, postage, and mail-room distribution.

Submission 1693

Profound Autism Network

This amendment would reduce avoidable administrative expenditure and redirect those resources toward participant supports, impose a transparency obligation on the Agency, and improve the participant experience by reducing the volume of unsolicited physical documents.

11.3.2 Proactive Disclosure of Internal Guidelines and Decision-Making Tools

The Agency continues to operate with substantial opacity in relation to internal case management guidelines, evidence hierarchies, and clinical decision support tools used by Agency staff to determine participant entitlements. Internal guidelines are not currently accessible to participants, families, or treating clinicians. That opacity forces external scrutiny through Freedom of Information processes at cost to both the Agency and participants and produces the conditions in which undisclosed internal criteria can operate without public accountability.

The Committee should recommend the insertion of new section 118C requiring the CEO to publish on the Agency’s website, within 30 days of any creation or update, all internal case management guidelines, evidence hierarchies, risk assessment tools, clinical decision support tools, and escalation frameworks used by Agency staff in making or reviewing decisions affecting participant access, plan value, support type, or funding level.

The NDIA’s current Escalation and Prioritisation Matrix, and any successor document, must be published within 30 days of the commencement of this section.

11.3.3 Independent Operational Readiness Assessment

Before the commencement of the evidence hierarchy provisions and the intensity cap provisions, the Minister should commission an independent operational readiness assessment to be conducted by a person or body with expertise in complex insurance scheme administration and disability services. The assessment must address whether the Agency has the workforce capability, risk management systems, clinical governance frameworks, and decision-making infrastructure required to implement those provisions safely for participants with Level 3 Autism and equivalent profound disability profiles.

The Committee should recommend insertion of new section 118D requiring this assessment and providing that the evidence hierarchy and intensity cap provisions must not commence until the Minister has tabled a response confirming that the matters identified in the assessment have been addressed or explaining why commencement is nonetheless appropriate.

11.3.4 Independent Efficiency and Duplication Audit

Submission 1693

Profound Autism Network

Before the commencement of the substantive provisions of this Act, the Minister should commission an independent auditor, appointed by the Auditor-General or following a competitive process, to conduct a comprehensive audit of the Agency and related Commonwealth government agencies. The audit must identify all areas of duplication, unnecessary administrative costs, and opportunities for genuine operational streamlining across the Scheme, including the cost-effectiveness of current Freedom of Information processes and the scope for mandatory proactive publication of internal decision-making materials.

The Committee should recommend insertion of new section 118B requiring this audit, public tabling of the audit report within 90 days of Royal Assent, and a published Ministerial response identifying which recommendations will be implemented and the timetable for implementation.

Cross-Jurisdictional and Inter-Agency Recommendations

Recommendation C1(a): Law Enforcement Registration and Mandatory Elopement Reporting to NDIS

The Problem

Children and adults with Level 3 Autism who have documented absconding or elopement behaviour are at immediate and severe risk of drowning, road trauma, exposure, and preventable death. Law enforcement agencies across Australia respond to elopement incidents involving this cohort on a recurring basis. In many cases, the same individual is reported missing multiple times. Each incident represents a safeguarding failure that the NDIS, as the scheme responsible for funding supports to mitigate that risk, should be notified of and required to respond to.

Currently, there is no systematic mechanism for law enforcement agencies to report elopement incidents to the NDIS, and no corresponding obligation on the Agency to treat such reports as triggering immediate triage review and escalation under the risk framework proposed in Section 10, Amendment 4 (proposed section 34A).

Proposed Measures

The Committee should recommend that the Commonwealth, in cooperation with State and Territory governments, implement a voluntary national registration system for individuals with severe and profound autism and equivalent high-risk disability profiles. The system should enable families and carers to register their child or dependent with relevant State and Territory police services, providing a profile that includes the individual’s name, photograph, disability diagnosis,

Submission 1693

Profound Autism Network

communication profile, known risk behaviours (including water-seeking, road-seeking, or climbing),

and emergency contact details.

 Upon registration, law enforcement agencies should be required to report every elopement

incident involving a registered individual to the NDIS within 24 hours. The NDIS must treat such reports as triggering mandatory triage review under the Severe and Profound Disability Risk Escalation Tool proposed in Section 5, with particular attention to whether the participant’s current funded supports are adequate to prevent recurrence.

  Where an individual is reported missing three or more times within a 12-month period, the

Agency must escalate the case to EXTREME-RISK classification and must not reduce, cap, or delay supports without documented multidisciplinary clinical review confirming that reduction will not increase the risk of further elopement.

Recommendation C1(b): National Elopement Alert System — The Airlie Alert

The Problem

    Australia has no national alert system equivalent to the AMBER Alert framework that is

specifically designed for, or consistently applied to, the elopement of children and adults with severe and profound autism. The AMBER Alert system, and its Australian equivalents including the Child Rescue Alert and various State-based missing child protocols, are primarily designed for child abduction scenarios. They do not reflect the distinct profile of a non-verbal autistic child who has left a supervised environment without awareness of danger, is attracted to water, roads, or rail corridors, and cannot respond to verbal communication from first responders or members of the public.

  The coronial record documents this failure repeatedly. Children have drowned in

circumstances where the proximity of water was known, where the child’s water-seeking behaviour was documented, and where the search response did not prioritise waterways with sufficient urgency. That is not a resource failure. It is a protocol failure, and it is one that can be corrected.

Proposed Measures

  The Committee should recommend that the Commonwealth, in cooperation with State and

Territory governments, implement a national elopement alert system, equivalent in reach and immediacy to the AMBER Alert framework, specifically designed for the elopement of individuals with severe and profound autism and equivalent profound disability profiles. The system should:

Submission 1693

Profound Autism Network

(a) be activated by a parent, carer, registered support worker, or law enforcement officer upon the confirmed or suspected elopement of a registered individual with a severe and profound impairment profile;

(b) broadcast immediately to law enforcement agencies, emergency services, and the public across the relevant geographic area, with a description of the individual, their disability profile, their known risk behaviours, and the specific environmental hazards to be prioritised in the search;

(c) include, as a mandatory element of every alert involving a non-verbal autistic individual with documented water-seeking behaviour, an immediate directive to check all accessible bodies of water within the individual’s likely travel radius as the first-priority search action; and

(d) be integrated with the voluntary registration system proposed in Recommendation C1(a), some that registered profiles are automatically populated into the alert system upon activation.

All State and Territory police services and emergency services should be required to embed, in their standard operating procedures for missing persons responses involving individuals with a severe and profound autism profile, the following mandatory first-response actions:

(a) immediate check of all accessible waterways, drainage channels, swimming pools, and water features within the individual’s likely travel radius, to be commenced within the first 15 minutes of response activation;

(b) deployment of officers trained in autism-specific communication and approach techniques as the primary contact with the individual if located;

(c) notification to the family or primary carer at every stage of the search, including upon location of the individual; and

(d) completion of a post-incident report to be provided to the NDIS and to the NDIS Quality and Safeguards Commission, triggering the mandatory triage review process described in Recommendation C1(a).

The Commonwealth should fund and mandate the development and delivery of autism- specific elopement response training for all frontline law enforcement and emergency services personnel, to be completed within 12 months of the implementation of the national alert system. That taining should be developed in partnership with families of autistic children who have experienced elopement incidents, specialist clinicians in severe and profound autism, and autistic self-advocates with expertise in communication and sensory processing.

Submission 1693

Profound Autism Network

Naming: The Airlie Alert

  The submission respectfully proposes that the national elopement alert system be named

the Airlie Alert, in memory of Airlie Montgomery, Airlie Alert, in memory of Airlie Montgomery, a 6- year-old non-verbal autistic girl who died on 16 March 2025 after wandering from her family home in North Nowra, NSW. Airlie’s death was preventable. Her case exemplifies the risk profile, the search protocol failures, and the tragic consequences that this alert system is designed to address.

  Naming the system in Airlie's memory would honour her life, acknowledge the grief of her

family, and serve as a permanent reminder to first responders, policymakers, and the community of the urgency and seriousness with which elopement incidents involving autistic children must be treated.

Recommendation C2: Mandatory Child Protection to NDIS Transfer Protocol

   Children with Level 3 Autism who enter out-of-home care systems, whether through voluntary

relinquishment or child protection intervention, frequently do so because NDIS-funded supports were inadequate to sustain family caregiving. Once in care, these children are at heightened risk of placement instability, carer breakdown, and preventable harm, as documented in coronial findings and child protection inquiries.

  The Committee should recommend that the Commonwealth, in cooperation with State and

Territory child protection agencies, develop and implement a mandatory transfer protocol requiring that:

    (a) any child with Level 3 Autism or equivalent profound disability entering out-of-home care

must have their NDIS plan immediately reviewed and escalated to HIGH-RISK or EXTREME-RISK classification under the Severe and Profound Disability Risk Escalation Tool;

    (b) the Agency must fund supports adequate to maintain the child safely in the out-of-home

care placement, including specialist behaviour support, augmentative communication systems, environmental modifications, and carer training;

    (c) child protection agencies must report to the NDIS, at the point of entry into care and at

intervals of not more than three months thereafter, on the adequacy of NDIS-funded supports and on any incidents of carer breakdown, placement instability, or harm to the child; and

Submission 1693

Profound Autism Network

(d) the NDS Quality and Safeguards Commission must audit, on an annual basis, the

adequacy of supports provided to children with profound disability in out-of-home care and must

report publicly on systemic gaps.

This protocol would reduce the risk of preventable deaths in care, improve placement stability, and ensure that the NDIS discharges its obligation to participants whose family caregiving capacity has been exhausted.

Recommendation C3: Carer Gateway Urgent Review and Integration with NDIS

Carer Gateway is a Commonwealth-funded service designed to provide information, support, and respite to unpaid carers. For carers of children and adults with Level 3 Autism, however, the service is frequently inaccessible, under-resourced, and unable to provide the intensity of psychological support, peer connection, and crisis respite that this cohort requires.

The Committee should recommend that the Department of Social Services conduct an urgent review of Carer Gateway’s adequacy for carers of people with severe and profound impairment, with specific attention to:

• (a) whether the service provides adequate crisis respite and psychological support for carers experiencing burnout, compassion fatigue, or clinical mental health deterioration;
• (b) whether referral pathways between Carer Gateway and the NDS are adequate to ensure that carer distress triggers immediate NDIS triage review and support escalation; and
• (c) whether Carer Gateway is adequately resourced to provide peer support programs specifically for carers of children with Level 3 Autism, including opportunities for connection with other families facing similar challenges.

The review should be completed within six months and should be accompanied by a funded implementation plan addressing identified gaps.

11.5 Recommendations for Referral to Other Bodies

11.5.1 Recommendation B1: Independent Public Inquiry into Agency Decision-Making Practices and Participant Deaths

The Case for Inquiry

The submission has documented, across multiple sections, a consistent and well-evidenced pattern: Agency decision-making practices, including the use of automated processes, actuarial models, internal guidance documents, template-based assessments, and centrally directed

Submission 1693

Profound Autism Network

decision-making frameworks, have reduced, denied, or delayed essential supports for participants with the most complex needs. In the most serious cases, those decisions have preceded participant deaths, family breakdown, and preventable deterioration.

There is currently no independent, publicly accountable mechanism for examining whether these practices have contributed to participant deaths or serious harm. Coronial processes are episodic and resource constrained. Freedom of information processes have produced partial disclosure. The Agency’s internal review mechanisms are not independent. Parliamentary scrutiny, while valuable, cannot compel production of internal decision-making records or examine witnesses under oath.

That gap in public accountability is not consistent with the obligations of a scheme established to protect some of Australia’s most vulnerable citizens. Where a scheme’s administrative practices may have contributed to preventable deaths, the public interest in transparent and coercive inquiry is clear.

Proposed Terms of Reference

The Committee should recommend that the Government establish a Royal Commission, or an equivalent independent public inquiry with full coercive powers, to examine the following matters:

• First: Whether the Agency’s use of automated, algorithmic, template-based, and actuarially directed decision-making practices has contributed to participant deaths, serious harm, family breakdown, homelessness, hospitalisation, institutionalisation, or preventable deterioration in the health or wellbeing of NDIS participants.
• Second: Whether the Agency’s internal guidance documents, risk triage tools, assessment frameworks, debt recovery practices, fraud identification processes, and support reduction or reassessment methodologies have operated in a manner consistent with the Agency’s statutory duties and with Australia’s obligations under the Convention on the Rights of Persons with Disabilities (United Nations, 2006).
• Third: Whether participants died or were placed at serious risk after supports were removed, reduced, delayed, or redirected to alternative service systems that were not capable of meeting their needs, and whether the Agency had, or should have had, knowledge of the risk those decisions created.

Submission 1693

Profound Autism Network

Fourth: Whether the Agency’s decision-making culture, institutional priorities, key performance indicators, and workforce training are adequately aligned with participant safety and with the rights-based purpose of the Scheme.

Fifth: What legislative, regulatory, and operational reforms are required to prevent recurrence of the harms identified, and to ensure that the Scheme operates in a manner consistent with its founding purpose and with Australia’s human rights obligations.

Scope and Safeguards

The inquiry should have the power to compel production of documents, to examine witnesses, and to make findings on matters of systemic concern. It should not be limited to examining decisions made about individual participants but should be empowered to examine the design and administration of the Scheme’s decision-making systems as a whole.

The inquiry should include, in its terms of reference, a specific direction to examine the cases of participants with Level 3 Autism and equivalent profound disability profiles, having regard to the external validity gap in the research base relied upon by the Agency, the adequacy of the Agency’s risk triage framework for this cohort, and the relationship between funding decisions and the deaths documented in the coronial record (Sections 3 and 4).

The establishment of such an inquiry would not be an act of condemnation of the Agency or its staff. It would be a recognition that a scheme of this scale and consequence must be accountable to the public, to participants, and to the Parliament for the outcomes it produces. It is also the appropriate response to a situation in which the existing accountability mechanisms have demonstrably not been sufficient.

11.5.2 Recommendation B2: Alternative Access Pathways for People with Disability Who Do Not Require Intensive Lifelong Supports

Observation

The Committee may wish to note that a comprehensive and durable response to NDIS sustainability would include the development of adequate alternative pathways, through Medicare, private health insurance, and employer-linked disability health streams, for people with disability who do not require intensive, lifelong funded supports of the kind the Scheme was designed to provide.

Such pathways would reduce pressure on the Scheme while ensuring that people with disability are not left without any support until their needs become severe, crisis-driven, or life-

Submission 1693

Profound Autism Network

threatening. Eligibility for those pathways should be determined by reference to functional impact,

treatment need, income, and employment status, rather than solely by reference to whether a person

qualifies for the most intensive tier of disability support.

   For people in employment, private health insurance or employer-linked insurance could

appropriately fund assessment, psychology, occupational therapy, speech pathology, workplace

adjustment, assistive technology, and early intervention. For people on low incomes, Medicare- funded disability health streams could provide equivalent access.

   This submission does not develop these proposals in detail, as they fall outside the provisions

of the Bill. The submission notes, however, that any alternative pathway framework must be

designed with full recognition that diversion to alternative systems is appropriate only where those

systems are genuinely adequate to meet the needs of the people directed to them. For participants

with Level 3 Autism and equivalent profound disability profiles, as this submission has argued at

length, no currently available alternative system meets that standard. The integrity of any tiered

framework depends on that distinction being maintained in both design and administration.

   Referral: The Committee may wish to refer these matters to the Productivity Commission,

the Department of Health and Aged Care, and the Department of Social Services for coordinated development as part of the broader reform agenda of which the Bill forms a part.

11.5.3 Recommendation B3: Disability Risk-Pooling, Insurance Coverage, and Tax Policy

Observation

   This submission acknowledges, without developing in detail, the broader structural question

of disability risk-pooling in the Australian economy. The NDIS currently absorbs a disproportionate share of the cost of disability that arises from illness, accident, and workplace injury in circumstances where income protection and total and permanent disability insurance coverage is absent or inadequate. That structural gap contributes to scheme pressure and to the conditions under which participants arrive at the Scheme in crisis rather than at an earlier and more treatable stage.

  The question of whether mandatory minimum insurance coverage, superannuation-linked

disability cover, or tax concessions for disability insurance holders would reduce that pressure and improve outcomes for people who acquire disability during their working lives is a legitimate and important policy question. It engages superannuation law, insurance regulation, and tax policy, and falls outside the jurisdiction of this Committee and the scope of this Bill.

Submission 1693

Submission 1693

Profound Autism Network

most complex needs are safe, supported, and treated as rights-holders rather than as cost centres.

The recommendations in this submission, legislative and administrative, are directed at that standard.

12. CONCLUSION

  The National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026 presents the Parliament with a choice that is both legislative and moral. The Scheme was established to give effect to the principle that people with significant and permanent disability are entitled to the supports they need to live with dignity, safety, and full participation in the life of their communities. That principle was not qualified by the availability of generalisable population-level research, by ministerially determined intensity thresholds, or by the institutional priorities of the agency administering the Scheme. It was a rights-based commitment, grounded in Australia’s obligations under the Convention on the Rights of Persons with Disabilities (United Nations, 2006) and in recognition of the equal worth of every person with disability.

  The Bill, as currently drafted, does not honour that commitment for participants with Level 3

Autism and equivalent profound disability. Its statutory evidence hierarchy privileges research that systematically excludes this cohort. Its intensity-capping framework carries no corresponding obligation to assess and document the risk of harm from under-support. Its functional capacity provisions, permanence test, and other service systems criteria, without the amendments proposed in this submission, will operate as structural barriers to access for the participants who most urgently require the Scheme’s protection.

  The consequences of these design deficiencies are not theoretical. They are documented in

the coronial record (Sections 3 and 4), in Administrative Review Tribunal and Federal Court proceedings (Section 6), and in the lived experience of families whose children have been harmed by the predictable consequences of inadequate support. The coronial record spanning more than a decade consistently identifies the same preventable failures: absent environmental safeguards, inadequate supervision ratios, communication breakdowns between agencies, and the absence of autism-specific clinical and risk protocols. The death of Airlie Montgomery in March 2025—a 6-year- old non-verbal autistic girl who wandered from her family home in North Nowra and died after falling from a cliff—is the most recent documented case in a pattern that continues. The NDIS was established to prevent precisely these outcomes. A Bill that entrenches the conditions producing

Submission 1693

Profound Autism Network

them is not securing the Scheme for future generations. It is placing the present generation of

cchildren with Level 3 Autism at continued and foreseeable risk.

        It is unnecessary to attribute improper motive to reach this conclusion. A scheme may

produce unjust and unsafe outcomes through design, institutional inertia, and inadequate attention

to the circumstances of the people most affected. The remedy is not condemnation. It is amendment.

The legislative and administrative reforms proposed in this submission are specific, practical, and

proportionate. They do not undermine the Bill’s legitimate sustainability objectives. They ensure that

those objectives are pursued in a manner compatible with Australia’s human rights obligations and

with the founding purpose of the Scheme.

Priority Amendments

  The Committee is asked to recommend all amendments set out in Section 10. In particular,

the Committee is asked to treat the following four amendments as matters of first priority:

 Amendment 1: Evidence hierarchy carve-out for severe and profound impairment (proposed

sections 33A(4)–(6))

 Amendment  2: Minimum  safety-threshold protection and safeguarding assessment

(proposed sections 34A and 34B)

 Amendment 3: Prohibition on automated decision-making for participants with profound

disability (proposed section 209A)

 Amendment 6: Human rights paramount consideration (proposed section 4(4))

  These four amendments, taken together, address the most direct and immediate structural

risks to the safety of participants in this cohort. They ensure that decisions affecting participants with

Level 3 Autism are grounded in the best available evidence for their specific presentation, that the

risk of harm from under-support is assessed and documented before any support is reduced or

capped, that high-stakes decisions are made by qualified human decision-makers with access to

clinical advice, and that the Scheme’s statutory objects are interpreted in a manner consistent with

Australia’s human rights obligations.

Implementation and Accountability

  The Committee is further asked to recommend the implementation and cross-jurisdictional

measures set out in Section 11, including:

• Independent overhaul of the NDIA risk triage operating model (Recommendation 1)

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• National NDIS Participant Death Review Committee (Recommendation 2)

• Mandatory annual public reporting on participant deaths and critical incidents (Recommendation 3)

• The Airlie Alert—a national elopement alert system for individuals with severe and profound autism (Recommendation C1(b))

• Independent public inquiry into Agency decision-making practices and participant deaths (Recommendation B1)

The absence of independent public accountability for participant deaths is not a gap that can wait for a further parliamentary cycle. Where a scheme’s administrative practices may have contributed to preventable deaths, the public interest in transparent and coercive inquiry is clear and urgent.

The Standard of Success

The measure of this Bill’s success cannot be found only in aggregate expenditure data or scheme participation numbers. It must also be found in whether the participants with the most complex and profound needs are safe, supported, and treated as rights-holders rather than as cost categories. The amendments proposed in this submission are directed at that standard.

The NDIS was established to ensure that Australians with permanent and significant disability could live with dignity and safety, and that their families could live with the confidence that adequate support would be available. For children with Level 3 Autism, that promise has not yet been kept.

This Bill provides the Parliament with a direct opportunity to keep it.

In the memory of Airlie Montgomery, Kumanjayi Little Baby and of every child and adult with profound disability whose death was preventable, the Committee is respectfully urged to take that opportunity to learn from systemic failings.

Submitted to the Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Date of submission: 1 June 2026

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Profound Autism Network

References

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Australian Broadcasting Corporation. (2006, December 31). Autistic boy found dead in river. ABC

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Australian Broadcasting Corporation. (2010, October 26). Carers took beach trips to tire out clients.

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   clients/2312336

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   off-body-found/5957408

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    autistic    daughter's    manslaughter     after    drowning    death.   ABC   News.

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  sentence/104357852

Australian Broadcasting Corporation. (2025, November 12). Grieving father whose son drowned in

   display   home    pool   says    his   death   was    preventable.  ABC   News.

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   talwinder-singh/105997612

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Profound Autism Network

Australian Broadcasting Corporation. (2026, March 4). Mosman Park murder-suicide: Clune family friend speaks. ABC News. https://www.abc.net.au/news/2026-03-04/mosman-park-murder-suicide-clune-family-friend-speaks/106411866

Australian Broadcasting Corporation. (2026, March 16). Family’s quest for sensory-safe playgrounds following daughter’s tragic death at The Grotto lookout. ABC News. https://www.abc.net.au/news/2026-03-16/airlie-montgomery-anniversary-sensory-safe-parks-mission/106437708

Bendigo Advertiser. (2012, February 27). Bailey’s family says thanks. https://www.bendigoadvertiser.com.au/story/73789/baileys-family-says-thanks

coronial.com.au. (2026). Systematic review of NDIS-related coronial findings across

coronal.com.au. (2026). Systematic review of Autism-related coronial findings across

Coroners Court of New South Wales. (2016). Findings: Castillo, Milne and Milne. https://coroners.nsw.gov.au/documents/findings/2016/Findings%20Castillo,%20Milne%20and%20Milne.pdf

Coroners Court of New South Wales. (2019). Inquest into the deaths of Maria Claudia Lutz, Elisa Manrique and Martin Manrique [Finding]. https://coroners.nsw.gov.au/documents/findings/2019/Lutz%20Manrique%20Finding%20v2.pdf

Coroners Court of New South Wales. (2022). Inquest into the death of Alex Raichman [Finding]. https://coroners.nsw.gov.au/documents/findings/2022/Inquest_into_the_death_of_Alex_Raichman.pdf

Coroners Court of New South Wales. (2022). Inquest into the death of Riley Christopher Shortland [Finding]. https://coroners.nsw.gov.au/documents/findings/2022/Inquest_into_the_death_of_Riley_Christopher_Shortland.pdf

Coroners Court of Victoria. (2010). Finding into death without inquest: Christian Jay Sherwood Peck. https://www.coronerscourt.vic.gov.au/sites/default/files/2018-12/christianjaysherwoodpeck_517509.pdf

Coroners Court of Victoria. (2013). Finding into death without inquest: Felix Hua. https://www.coronerscourt.vic.gov.au/sites/default/files/2018-12/felixhua_274209.pdf

Submission 1693

Profound Autism Network

Coroners Court of Victoria. (2023). Finding into death without inquest: Aluel Ajak [Form 38].

https://www.coronerscourt.vic.gov.au/sites/default/files/COR%202023%20003665%20Form

%2038%20-%20Finding%20into%20Death%20without%20Inquest_Signed.pdf

Coroners Court of Victoria. (2024). Finding into death following inquest: Harley James Smith [Form

37].

https://www.coronerscourt.vic.gov.au/sites/default/files/COR%202024%20002111%20Form

%2037-Finding%20into%20Death%20Following%20Inquest Published.pdf

Daily Telegraph. (2009, October). Coroner criticises failures.

https://www.dailytelegraph.com.au/news/nsw/coroner-criticises-failures/news-

story/282d74fe02340bcc56530cbb8ebfb72f

Disability Memorial. (n.d.). Shellay Ward. https://disability-memorial.org/shellay-ward

Disability Memorial. (n.d.). Taye Miles, Rylan Miles, Arye Miles and Kadyn Cockman.

https://disability-memorial.org/taye-miles-rylan-miles-arye-miles-and-kadyn-cockman

Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., Carr, T., de Vries, P. J.,

Dissanayake, C., Divan, G., Freitag, C. M., Gotelli, M. M., Kasari, C., Knapp, M., Mundy, P.,

Plank, A., Scahill, L., Servili, C., Shyman, T.,  ... Veenstra-VanderWeele, J. (2022). The

Lancet Commission on the future of care and clinical research in autism. The

Lancet, 399(10321), 271-334. https://doi.org/10.1016/S0140-6736(21)01541-5

National Disability Insurance Agency. (2024). Freedom of information disclosure log: FOI 24/25-

0380 [Research papers and literature reviews]. https://www.ndis.gov.au/policies-rules-and-

Legal/about-freedom-information-foi/foi-disclosure-log

National Disability Insurance Agency v Davis FCA 1215.

MSN News. (2024). Parents of four-year-old boy who drowned in lagoon sue their local council over

inadequate fencing. https://www.msn.com/en-ae/news/other/parents-of-four-year-old-boy-

who-drowned-in-lagoon-sue-their-local-council-over-inadequate-fencing/ar-AA1ReVwD

New South Wales Ombudsman. (2009). Special report: Death of Ebony.

https://cmsassets.ombo.nsw.gov.au/assets/Reports/Special-Report-Death-of-Ebony-Oct-

2009.pdf

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Profound Autism Network

News.com.au. (2010). Wandering toddler Christian Peck’s death prompts bracelet probe.

https://www.news.com.au/national/wandering-toddler-christian-pecks-death-prompts- bracelet-probe/news-story/e0d0fe144c6688ac24821fb794fd3a1c

News.com.au. (2023). ‘Worst nightmare’: Heartbreaking update in search for boy, 5, missing from southwest Sydney. https://www.news.com.au/national/nsw-act/news/worst-nightmare- hurting-update-in-search-for-boy-5-missing-from-southwest-sydney/news- story/9c308c3210c932ad88d3638582c97752

News.com.au. (2024). Perth dad’s devastating plea after non-verbal 6yo Joey disappeared, drowned in neighbour’s pool. https://www.news.com.au/lifestyle/real-life/news-life/perth-dads- devastating-plea-after-nonverbal-6yo-joey-disappeared-drowned-in-neighbours-pool/news- story/1960c44e53fe6bf743c7d57bd692d48e

Nine News. (2016). Coroner criticises NSW car crash dad. https://www.9news.com.au/national/coroner-criticises-nsw-car-crash-dad/ebb58ab2-2fee- 488f-b3c5-1ba0fc39f25b

Productivity Commission. (2011). Disability care and support: Productivity Commission inquiry report (No. 54). Australian Government.

Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T., & Ford, T. (2019). Selection bias on intellectual ability in autism research: A cross-syndrome comparison. Molecular Autism, 10, Article 9. https://doi.org/10.1186/s13229-019-0260-x

Salomon, C., & Trollor, J. (2019). A scoping review of causes and contributors to deaths of people with disability in Australia: Summary of recommendations. Department of Developmental Disability Neuropsychiatry, University of New South Wales. https://www.ndiscommission.gov.au/sites/default/files/2024-09/summary-recommendations- 24.pdf

Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1-29. https://doi.org/10.1037/bul0000215

Stedman, A., Taylor, B., Erard, M., Peura, C., and Siegel, M. (2018). Are children severely affected by autism spectrum disorder underrepresented in treatment studies? An analysis of the

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literature. Journal of Autism and Developmental Disorders, 49(4), 1378–1390.

https://doi.org/10.1007/s10803-018-3844-y

Spencer, T. D., Detrich, R., and Slocum, T. A. (2012). Evidence-based practice: A framework for

making effective decisions. Education and Treatment of Children, 35(2), 127–151.

https://www.researchgate.net/publication/236706595 Evidence-

based Practice A Framework for Making Effective Decisions

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http://decisions.courts.wa.gov.au/judgments/view_judgments.aspx?judge_id=58&year=202

0

Tager-Flusberg, H., and Kasari, C. (2013). Minimally verbal school-aged children with autism

spectrum disorder: The neglected end of the spectrum. Autism Research, 6(6), 468–478.

https://doi.org/10.1002/aur.1329

The Age. (2011, March 31). Boy had roamed before tragedy.

https://www.theage.com.au/national/victoria/boy-had-roamed-before-tragedy-20110331-

1cngk.html

The Age. (2012, February 27). Cameraman rescues lost autistic boy.

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20120227-1tyyz.html

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https://www.ohchr.org/en/instruments-mechanisms/instruments/international-covenant-civil-

and-political-rights

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Profound Autism Network

APPENDIX

APPENDIX A: THE SEVERE AND PROFOUND AUTISM RISK ESCALATION TOOL

The Inadequacy of the NDIA’s Existing Escalation Framework

  The NDIA's current internal Escalation and Prioritisation Matrix, dated November 2021, is not fit for purpose when applied to participants with severe and profound autism. Its deficiencies are structural, not incidental. They reflect a framework designed for general institutional risk management rather than for the specific, documented, and high-stakes safeguarding profile of participants with Level 3 Autism, profound adaptive impairment, minimal or absent functional communication, and high-risk behavioural presentations.

  The Committee should note the following specific deficiencies:

    Institutional self-protection is weighted alongside participant safety. Five of the ten risk categories in the existing matrix address the protection of the Agency's reputation, media profile, ministerial confidence, and relationships with government stakeholders. Participant safety, described as risk of harm to the health or wellbeing of a person, appears as one category among ten, without primacy. In a scheme established to advance the rights and safety of people with disability, that ordering of priorities is not defensible.

 The matrix contains no clinical triggers for the specific risks that kill children with Level 3 Autism. There is no reference in the existing framework to elopement or absconding behaviour, water-seeking behaviour, choking, dysphagia or pica, self-injurious behaviour requiring medical intervention, carer mental health deterioration or burnout, cumulative harm to participants and carers, loss of informal care capacity, or systemic failure across multiple service systems. These are precisely the factors that coronial findings across more than a decade have repeatedly identified as contributing to preventable deaths of autistic children and adults in Australia.

 The matrix is generic and non-clinical. It is a blunt bureaucratic instrument designed for general administrative risk management.   It does not distinguish between disability types, communication profiles, severity levels, or behavioural risk profiles. Applied to a participant with Level 3 Autism, elopement history, no safety awareness, and carer burnout, it will not reliably generate the escalation response that participant's circumstances require.

  There is no mandatory escalation pathway even at the highest risk level. Even where a participant is classified as presenting Extreme risk, the existing matrix does not trigger automatic provision of twenty-four-hour one-to-one supervision, emergency crisis placement, or mandatory

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independent clinical review. The matrix identifies risk. It does not require a protective response proportionate to that risk.

 The matrix predates multiple preventable deaths and has not been updated. Dated November 2021, the matrix predates a number of deaths of autistic participants that have since been the subject of coronial or media scrutiny. There is no evidence that lessons from those proceedings have been incorporated into the tool or the operating model it supports.

The Severe and Profound Impairment Risk Escalation Tool

  The following tool has been developed specifically for participants with Level 3 autism spectrum disorder and other severe and profound impairment presentations. It is clinically grounded, cohort-specific, and calibrated to the safeguarding realities of profound impairment. Importantly, it does not classify a participant as high risk merely by virtue of diagnosis.  It requires specific, observable, and documented  risk indicators to be present. This ensures that escalation is proportionate, evidence-based, and defensible

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Key Clinical Additions Incorporated in This Tool

The following risk domains, absent from the NDIA’s existing matrix, have been formally embedded in this instrument:

• Carer mental health deterioration and burnout as an independent high-risk trigger
• Medical contraindication to sustained caregiving as a standalone indicator
• Cumulative harm risk to participants, carers, and others in the household
• Loss of informal care capacity as a High and Extreme risk trigger
• System failure across multiple service systems as an Extreme risk indicator
• Safeguarding escalation pathways at both High and Extreme risk levels

These additions reflect the consistent findings of coronial proceedings, the documented experience of families of children with Level 3 Autism, and the clinical literature on severe and profound neurodevelopmental disability. They are not novel proposals. They are the operational translation of what the evidence has been saying for more than a decade.

Legislative Recommendation

The Bill should be amended to require adoption of this tool, or any successor tool approved by the Minister following independent clinical review, as the primary risk triage instrument for participants with Level 3 Autism or equivalent profound disability profiles. That requirement should be given effect in proposed new section 34A of the Act (Section 10, Amendment 2).

The NDIA’s existing Escalation and Prioritisation Matrix should be decommissioned for this cohort upon commencement. It should not be applied to participants with Level 3 Autism pending the adoption of a replacement tool, and any decision made in reliance on the existing matrix for a participant in this cohort should be subject to mandatory review under the new instrument within a defined transition period.

The adoption of a clinically grounded, cohort-specific risk escalation tool is not a peripheral administrative matter. It is the operational mechanism through which the legislative safeguards proposed in this submission will either be realised or frustrated. Without it, the statutory amendments will improve the legal framework without changing the decisions that determine whether children with Level 3 Autism are adequately supported and safe.

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AUTISM-RELATED CORONIAL FINDINGS Australia — All Jurisdictions, 2008–2026

A systematic review of coronial findings involving autistic individuals across Australian jurisdictions, compiled from coronial.com.au. This report synthesises 104 search results, presenting in-depth analysis of the most significant autism-confirmed cases, thematic patterns, systemic risk factors, and coroner recommendations relevant to disability services, clinical practice, and policy.

                                2008–2026  104      10       8

 Total search results            Australian jurisdictions          Thematic categories           Year range covered

Report generated: 20 May 2026 | Source: coronial.com.au (State and Territory Coronial Services)

Disclaimer: This report is compiled for research and clinical education purposes. Individual case details have been sourced from publicly available coronial findings. Some cases involve suppressed names or identities protected by non-publication orders — these are referred to by initials or anonymised identifiers as published. This report does not constitute legal advice.

AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Overview & Search Methodology

This report presents a comprehensive analysis of coronial findings returned by a search for ’ autism’ on coronial.com.au, Australia’s aggregated national coronial database. The search returned 104 results spanning all eight Australian states and territories, covering findings published between 2008 and 2026.

The coronial.com.au platform aggregates findings from the Victorian Coroners Court, NSW Coroners Court, Queensland Coroners Court, Western Australian Coroner’s Office, South Australian Coroner’s Court, ACT Coroner’s Court, Northern Territory Local Court (Coronial Division), and the Tasmanian Coroners Court. Not all findings are publicly available in full text — some are summarised by title and metadata only, and others are subject to suppression or non-publication orders.

It is important to note that a search for ‘autism’ will return any finding in which the word ‘autism’ appears, regardless of whether autism was the primary diagnosis of the deceased. Some results in the full dataset of 104 are tangentially related cases — for example, findings involving individuals who came into contact with an autistic person, or where autism was mentioned as a contextual factor. This report focuses on cases in which autism was a confirmed or strongly suspected diagnosis of the deceased person.

Jurisdiction Distribution — All 104 Results

Victoria accounts for 66% of all autism-related coronial findings in the database, reflecting both Victoria’s robust coronial documentation practices and its large disability service sector.

AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Thematic Categories

Cases in which autism was a confirmed or strongly suspected diagnosis of the deceased fall into six principal thematic categories. These themes reflect recurring systemic vulnerabilities in the care and support of autistic individuals across Australia.

Cross-Cutting Systemic Themes

Communication Barriers and Diagnostic Underrecognition

A recurring theme across multiple categories is the impact of autism-related communication difficulties on clinical assessment. In the cases of Damon Cabiddu (NT, 2011), Hunter (QLD, 2023), and Rodney Griffin (VIC, 2016), the inability of the autistic individual to communicate pain or distress accurately — whether due to limited verbal communication, alexithymia, or atypical pain presentation — contributed to delayed or missed diagnoses of acute surgical conditions. This reflects a systemic failure to adapt clinical assessment to the communication profiles of autistic patients.

Inter-Agency Communication Failures in Disability Services

Multiple choking deaths (Joanne Callahan, Mark Capovilla, John Kamps) share a common factor: documented choking or dysphagia risks were not adequately communicated between residential disability providers and day programs or other service agencies. Despite formal risk assessments and speech pathology recommendations existing within one service system, these were not transmitted to the organisation responsible for mealtimes. This reflects a structural weakness in information-sharing protocols across the disability sector.

Elopement and Water Safety

Elopement (absconding from supervision) is a well-documented risk in autistic individuals, particularly children. Three cases involving drowning (Christian Peck, Felix Hua, Cameron De Vries) and two involving road trauma (Riley Shortland, Alex Raichman) were precipitated by elopement. The persistence of this theme across more than a decade — from 2009 to 2022 — suggests that despite awareness, systemic implementation of elopement prevention strategies remains inadequate. Water safety is a particular concern, given that autistic individuals are statistically more likely to be attracted to water.

Autism-Related Coronial Findings — Australia Submission 1693

coronial.com.au | Generated 20 May 2026

Mental Health Comorbidities and Inadequate Support

Suicide accounts for a significant proportion of autism-related coronial findings. Cases involving Kyle Horne, Rory Van Geleuken, Aaron Stagg, Joshua Klumper, GY, JH, and XY reflect the elevated suicide risk among autistic individuals — a risk estimated at three to seven times higher than the general population. Common themes include: co-occurring mental health conditions (depression, anxiety, psychosis), inadequate ASD-adapted crisis support, gaps in care coordination during service transitions, and inadequate clinical risk assessment tools not calibrated for autistic presentations.

NDIS-Era Accountability and Quality Gaps

Several cases occurred in NDIS-funded service settings (Cameron De Vries — NDIS group home; Edward Harris — supported accommodation; Mark Capovilla — NDIS day program). These cases raise questions about NDIS quality and safeguarding frameworks, particularly around: documentation standards, staff training, incident reporting, and the effectiveness of the NDIS Quality and Safeguards Commission in preventing avoidable deaths.

Absence of ASD-Specific Clinical Protocols

Across all thematic categories, a unifying gap is the absence of autism-specific clinical protocols in ergency medicine, primary care, and disability services. Whether it is the emergency physician misreading pain in a non-verbal autistic child (Damon Cabiddu), the Headspace worker poorly equipped to assess suicide risk in an autistic teenager (XY), or the disability day program staff unaware of a client’s choking risk (Joanne Callahan), the findings collectively point to a need for systemic, autism-specific training and protocol development across all sectors.

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AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Complete Search Results — Reference Table

The following table lists all 104 results returned by the coronial.com.au search for ‘autism’. Note that this includes all cases where the word ‘autism’ appeared in the finding, regardless of whether the deceased was autistic. Cases are listed in search result order (pages 1–6).

Source: coronial.com.au | May 2026 Page 16

AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Source: coronial.com.au | May 2026 Page 17

Autism-Related Coronial Findings - Australia Submission 1693

coronial.com.au | Generated 20 May 2026

| 10 Sean Daniel Collins | 2019 | NT | 32M | Hanging | | | 10 Child SK (suppressed) | 2024 | WA | 13F | Head injury — struck by car | | | 10 Bridie Gilligan | 2026 | QLD | 42F | Choking — Cornelia de Lange Syndrome | | | 10 Joshua Fredrik Van Malssen | 2026 | WA | 24M | Cardiac arrest — prone restraint | | | 10 Finlay Browne | 2024 | NS | 16M | Mid-gut volvulus — Down syndrome |

AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

6. Synthesised Recommendations for Practice and Policy

The following recommendations synthesise recurring themes from coroner findings across the dataset. They are directed at disability service providers, clinicians, policymakers, and the NDIS Quality and Safeguards Commission.

Disability Service Providers

1. Implement formal mealtime support plans for all clients with documented dysphagia, choking risk, or pica behaviour, reviewed annually and communicated to all service environments (residential, day programs, transport).

2. Establish robust inter-agency communication protocols ensuring health, risk, and behaviour support information is shared in real time between residential providers, day programs, and respite services.

3. Conduct environment-specific risk assessments for elopement, water access, and dangerous materials for all autistic clients with relevant risk histories.

4. Mandate one-to-one supervision for bath/shower activities for clients with seizure disorder or elopement risk.

5. Implement the International Dysphagia Diet Standardisation Initiative (IDDSI) framework sector-wide, replacing ambiguous food texture descriptors.

6. Develop and regularly update individual seizure management plans for clients with epilepsy, in consultation with neurologists.

Clinical Practice — Emergency Medicine and Primary Care

1. Develop autism-specific clinical assessment tools for emergency presentations, accounting for communication differences, atypical pain presentation, and alexithymia.

2. Provide mandatory ASD-awareness training for emergency physicians, nurses, and paramedics, focusing on the risk of underdiagnosis of acute conditions in non-verbal or limited-verbal autistic patients.

3. Implement standardised communication supports (e.g., AAC devices, visual supports, Carer as informant protocols) in emergency department settings.

4. Ensure autism diagnosis and communication profile is flagged prominently in patient records accessible across health services.

Mental Health Services

1. Develop and implement ASD-adapted suicide risk assessment tools, accounting for the elevated suicide risk and atypical presentation of suicidal ideation in autistic individuals.

2. Ensure formal care coordination and transfer-of-care plans when autistic young people transition between mental health services (e.g., CYMHS to adult services or private providers).

3. Remove ligature points from all mental health inpatient units accommodating autistic patients.

4. Train Headspace and youth mental health services in ASD-specific crisis presentations and intervention approaches.

NDIS and Government Policy

1. Strengthen NDIS Quality and Safeguards Commission oversight of group home documentation, incident reporting, and staff competencies, with particular attention to choking/aspiration and elopement deaths.

AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

• Develop minimum NDIS practice standards for health management, including seizure plans, mealtime plans, and elopement risk management.

• Enhance transition support for young autistic adults (aged 18) leaving the child protection system into NDIS-funded accommodation, to address the gap in continuity of care.

• Invest in supported accommodation options for autistic adults with complex behavioural needs and mental illness, to reduce homelessness and housing instability.

• Fund mandatory ASD-specific training for all NDIS-registered disability support workers.

Child Protection and Out-of-Home Care

• Ensure autistic children in out-of-home care have current, accessible, hand-held health records that travel with the child to all service environments.

• Mandate dedicated care coordinators for autistic children in out-of-home care with complex health and disability needs.

• Implement NDIS minimum standards for health management guidelines and first aid training in out-of-home care disability placements.

• Strengthen interdisciplinary coordination between child safety, disability services, education, and health for autistic children in care.

AUTISM-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

7. Data Sources

1.

coronial.com.au — Autism search results — https://coronial.com.au/search?q=autism Primary search database — 104 results, all pages extracted

2.

NSW Coroners Court — Finding: Cameron De Vries — https://coroners.nsw.gov.au/documents/findings/2025/Inquest_into_the_death_of_Cameron_De_Vries.pdf Full PDF finding — drowning in NDIS group home

3.

NT Local Court — Inquest: Damon Cabiddu — https://localcourt.nt.gov.au/sites/default/files/decisions/NTMC018InquestintodeathofCabiddu_D02252009_01062011.pdf Full PDF inquest finding — ruptured appendix

4.

QLD Courts — Finding: C (14-year-old girl) — https://www.courts.qld.gov.au/__data/assets/pdf_file/0005/484835/c-a-14-year-old-girl-non-inquest-findings.pdf Full PDF non-inquest finding — choking on food bolus

5.

WA Coroners Court — Finding: Child L — https://www.coronerscourt.wa.gov.au/ WA Coroner’s Office — SUDEP with aspiration

6.

NSW Coroners Court — Finding: Riley Shortland — https://coroners.nsw.gov.au/ NSW Coroner inquest — M1 Motorway elopement death

7.

coronial.com.au — Individual findings (all cases listed) — https://coronial.com.au/ Individual case findings — see Section 4 for direct case URLs

All case information is drawn from publicly available coronial findings. Where full finding text was not available online, information is based on page metadata, description fields, and supplementary news/government sources as noted in each case.

Submission 1693

NDIS-RELATED CORONIAL FINDINGS

Australia — All Jurisdictions, 2014–2026

A comprehensive analysis of coronial findings involving NDS participants and the disability support sector across Australian jurisdictions, compiled from coronial.com.au. This report synthesises all 230 search results and provides in-depth analysis of the most significant cases — examining causes of death, systemic failures, NDIS provider accountability, and coroner recommendations relevant to disability services, clinical practice, and policy.

Report generated: 20 May 2026 | Source: coronial.com.au (State and Territory Coronial Services)

Disclaimer: This report is compiled for research and education purposes. Individual case details are sourced from publicly available coronial findings. Cases involving suppressed identities are referred to by initials or court-approved designators only. This report does not constitute legal advice.

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

1. Overview & Methodology

This report presents a systematic analysis of all coronial findings returned by a search for ’ NDIS’ on coronial.com.au, Australia’s aggregated national coronial database. The search returned 230 results across all eight Australian jurisdictions, covering findings published between 2014 and 2026. The National Disability Insurance Scheme (NDIS) was progressively rolled out from 2013, so the earliest findings reflect cases from the transition period.

A search for ‘NDIS’ captures findings where the deceased was an NDIS participant, where an NDIS provider was involved in the person’s care, where NDIS funding decisions are scrutinised, or where the NDIS Quality and Safeguards Commission is referenced. Not all 230 results represent cases where NDIS failures contributed to death — many involve natural disease progression in NDIS participants receiving appropriate care. This report focuses on cases where systemic failures, preventability, or policy implications are identified.

Jurisdiction Distribution — All 230 Results

Victoria’s dominance (89%) reflects both its proactive coronial documentation and its status as the largest NDIS market by participant numbers.

Participant Profile — All 230 Results

                           epilepsy/Lennox-Gastaut syndrome, acquired brain injury, Huntington's disease, Parkinson's

disease, autism spectrum disorder, motor neurone disease, spinal cord injury | | Most common settings | Hospital (128), Home/SDA/SIL (32), Other community (32), Aged care (11), Mental health facility (4) | | Most common causes | Aspiration pneumonia (most frequent), complications of neurological/progressive disease, sepsis, choking, cardiovascular disease, suicide/self-harm, assault, drowning |

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Thematic Categories

Cases across the 230 results fall into eight principal thematic categories reflecting recurring vulnerabilities in NDIS-supported care, health systems, and policy. The categories below represent the primary reason for coronal scrutiny rather than the bare clinical cause of death.

| Suicide / Self-Harm | Mental health comorbidities; inadequate crisis support; NDIS funding denials delaying care; ligature risks in facilities | BQ, Didbala Anzac, Glen McKinley, Peter Bolton, Claire Carroll, PLM, Andrea Milner |

| Family Violence / Homicide | NDIS providers not integrated into MARAM; family violence training gaps; perpetrator warning signs missed | HDS (assault by son), PLM (partner homicide) |

| NDIS Funding Denials / System Failures | Funding refusals leading to prolonged hospitalisation or inadequate community care; delays in plan activation | Samaan Elsamin, Peter Bolton, Didbala Anzac, Kelvin Forrest, Andrew Barr |

| Restraint / Use of Force | Deaths during police/clinical restraint; acute agitation management; inadequate de-escalation protocols | Ricky Broughton (police restraint during psychiatric transfer) |

| Progressive Neurological Disease | Down syndrome/Alzheimer’s; cerebral palsy; Huntington’s; Lennox-Gastaut; end-of-life planning gaps; NDIS adequacy for palliative needs | Kristy Mitchener, Janelle Lavery, Rebecca May, Hannah Gray, Timothy Rubenach, Donna Corlett |

| Pressure Injuries / Neglect | Sacral pressure wounds; inadequate wound care protocols; SDA provider accountability | Kristy Mitchener (Aruma/Winn Grove — sacral pressure ulcer leading to sepsis) |

| Drowning / Elopement / Community Incidents | Inadequate risk assessment for community leave; supervision failures; escorted leave protocols | Benjamin Woodhouse, Cameron De Vries, Carl Adler |

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

3. Cross-Cutting Systemic Themes

NDIS Funding Denials and Institutional Failure

Several of the most significant cases in this dataset involve NDIS funding refusals that directly contributed to prolonged institutionalisation, inadequate community care, or death. Samaan Elsamin (21, WA) had severe treatment-resistant schizophrenia and intellectual disability; when NDIS funding for increased community support was denied, he remained in a PICU with no suitable facility in WA. He died with cause unascertained. Peter Bolton (36, WA) had NDIS funding declined for supported living; prolonged inpatient detention contributed to the circumstances of his suicide. Didbala Anzac (17, NT) experienced an 18-month NDIS application delay despite identified eligibility — care fell through and she died by hanging while in CASPA residential care. Kelvin Forrest (53, NSW) fell from a hospital first floor while awaiting NDIS SDA funding approval. These cases demonstrate that NDIS access decisions can be life-or-death determinations, and that funding delays and denials carry serious human consequences.

Aspiration Pneumonia as the Leading Cause of Preventable Death

Aspiration pneumonia and choking on food bolus account for the largest category of NDIS-related coronial findings, with dozens of cases across VIC, QLD, NSW, and TAS. The pattern is consistent with the autism coronial dataset: documented dysphagia and choking risks are not communicated between residential providers and day programs; mealtime management plans are absent, outdated, or not followed; and food texture classifications are ambiguous. Bridie Gilligan (42, QLD, Cornelia de Lange Syndrome) choked on a Hungry Jack’s burger at her Endeavour Foundation SIL provider — a dysphagia assessment had been cut short and never rescheduled. Mark Capovilla (39, VIC) died at a disability day program that classified him as an ‘independent eater’ despite a documented choking risk from his residential provider. The International Dysphagia Diet Standardisation Initiative (IDDSI) was recommended in multiple cases as a systemic solution.

Family Violence and the NDIS Sector

At least two cases involve NDIS participants killed in family violence — one (HDS, 41, VIC) by her adult son, and one (PLM, 40, VIC) by a former intimate partner with an extensive family violence history and multiple breached intervention orders. In both cases, coroners identified that NDIS providers were not integrated into Victoria’s Multi-Agency Risk Assessment and Management (MARAM) framework, preventing information sharing and coordinated risk response. NDIS workers who had contact with both women lacked mandatory family violence training. These findings call for immediate legislative prescription of NDIS providers under MARAM and mandatory family violence training for all disability support workers.

Deaths During Restraint and Acute Behavioural Episodes

Ricky James Broughton (47, VIC) died during police restraint in Ballarat while being transferred for involuntary psychiatric care. His death during ‘prolonged struggle in an acute behavioural episode’ highlighted a catastrophic communication failure — his psychiatrist’s assessment had not been shared with attending police officers. The coroner’s recommendations to Victoria Police addressed de-escalation, response to unconscious persons, and inter-agency communication. This case reflects a broader pattern of autistic and neurodivergent individuals dying in contact with law enforcement and emergency services, and the need for police training specific to psychiatric and disability crises.

Pressure Injuries, Wound Care, and SDA Provider Accountability

Kristy Ann Mitchener (45, VIC) died from sepsis secondary to a sacral pressure wound in her SDA residence (Aruma/Winn Grove). The coroner identified that comprehensive pressure care and wound care training had not been implemented at the facility. Following her death, Aruma committed to completing training for all staff. This case exemplifies the gap between NDIS registration requirements and actual provider capability, and reinforces the need for the NDIS Quality and Safeguards Commission to conduct regular unannounced compliance audits of SDA providers, particularly around pressure injury prevention.

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Suicide Risk and NDIS Mental Health Participants

Multiple findings involve NDIS participants who died by suicide or self-harm, with common themes including treatment-resistant mental illness (schizophrenia, schizoaffective disorder), inadequate crisis plans, NDIS funding gaps, and ligature risks in mental health facilities. BQ (23, NSW) died by hanging in a psychiatric inpatient unit after a 6-day delay in accessing her comprehensive psychiatric history and an inadequate suicide risk assessment on admission. Claire Carroll (45, VIC) died by hanging while experiencing severe untreated psychosis despite active crisis support. Haydn McKinley-Glen (22, SA) died by hanging while under guardianship with special powers of detention in supported independent living. These cases collectively point to the urgent need for NDIS-funded mental health supports to be better integrated with clinical mental health services.

The Role of the NDIS Quality and Safeguards Commission

Across dozens of cases, coroners reference the NDIS Quality and Safeguards Commission (NDIS QSC) in findings involving provider failures. However, a striking feature of this dataset is that very few coroners make specific recommendations to the NDIS QSC — most recommendations are directed at individual providers, hospitals, or state government agencies. This may reflect coronial jurisdiction limitations or a broader uncertainty about the Commission’s enforcement role. Several findings in the dataset predate the NDIS QSC’s full regulatory operation (commencing July 2019). The dataset as a whole supports calls for greater NDIS QSC proactive oversight, including mandatory serious incident review, sector-wide learning from coronial findings, and regular unannounced audits of registered providers.

Down Syndrome, Trisomy 21 and Alzheimer’s Disease — A Distinct Cluster

A notable cluster of VIC findings (approximately 15–20 cases) involve NDIS participants with Down syndrome who developed Alzheimer’s dementia in their 50s and 60s and died from aspiration pneumonia or related complications. This is a recognised phenomenon — people with Down syndrome have a significantly elevated risk of early-onset Alzheimer’s disease, and as the first generation to grow old under the NDIS, this cohort is presenting a new challenge for disability and aged care systems. These findings highlight the urgent need for NDIS plans to incorporate end-of-life care funding, palliative care pathways, and earlier advance care planning for NDIS participants transitioning into age-related cognitive decline.

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NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

5. Complete Search Results — Reference Table (230 Cases)

All 230 results returned by coronial.com.au for the search term ‘NDIS’, listed in search order (pages 1–12). Note: this table includes all results where ‘NDIS’ appears in the finding — some are natural disease deaths in NDIS participants with no identified provider failures.

| # Name / Identifier Yr Jur. Age/Se Cause of Death | |–––––––––––––––––|––––|——|—––|—————————–| | 1 HD S | 2026 | VIC | 41F | Multiple injuries — assault | | 2 Ms K | 2021 | VIC | 65F | Unascertained (natural causes) | | 3 Stephanie Rebernik | 2025 | VIC | 69F | Effects of fire | | 4 Kelly Frith | 2024 | VIC | 48F | Aspiration pneumonitis — CNS vasculitis | | 5 Ms Ngatokoa | 2024 | VIC | 56F | Small bowel obstruction / aspiration — MND | | 6 Unnamed (early onset dementia)| 2026 | VIC | 48F | Complications of early onset dementia | | 7 Forrest Kelvin | 2022 | NSW | 53M | Multiple injuries — fall from first floor | | 8 Bridie Gilligan | 2026 | QLD | 42F | Hypoxic brain injury — choking (Cornelia de Lange) | | 9 Unnamed (coronary/aortic) | 2022 | VIC | 57F | Stenosed right coronary / aortic valve regurgitation | |10 Kumanjayi Holmes | 2023 | NT | 15F | Complications of Batten disease (CLN3) | |11 Unnamed | 2025 | VIC | 64M | Pneumonia — ischaemic cerebrovascular (pneumonia/cerebrovascular) | |12 Unnamed (gastric | 2022 | VIC | 52M | Gastric adenocarcinoma adenocarcinoma) | |13 Unnamed (aspiration/Down | 2022 | VIC | 58M | Aspiration pneumonia — Down syndrome/dementia syndrome/dementia) | |14 Ronald Lalli-Cafini | 2024 | VIC | 50M | Motor neurone disease | |15 Stephen Hills | 2024 | VIC | 65M | Glioblastoma multiforme | |16 Stephen Easter | 2025 | VIC | 64M | Hepatocellular carcinoma | |17 Rolf Liebenow | 2024 | VIC | 68M | Chronic lymphocytic leukaemia | |18 Mark Andrew Harvey | 2025 | VIC | 55M | End stage renal failure | |19 Donald (urosepsis/Trisomy 21)| 2025 | VIC | 59M | Urosepsis and aspiration pneumonia (Trisomy 21) | |20 Unnamed (multiple system | 2023 | VIC | 61M | Complications of multiple system atrophy atrophy) | |21 Anthony Swaney | 2021 | VIC | 58M | Acute renal failure — pneumonia | |22 John Hardy Stow | 2022 | VIC | 73M | Aspiration pneumonia | |23 Jannene Wilson | 2024 | VIC | 59F | Urosepsis — multiple sclerosis | |24 Timothy John Jeitz | 2024 | VIC | 52M | Right MCA stroke | |25 Paul Munt | 2024 | VIC | 64M | Acute renal failure — stroke | |26 Unnamed (Alzheimer’s/Down | 2024 | VIC | 58M | Alzheimer’s dementia — Down syndrome syndrome) | |27 Faye Cosgrave | 2024 | VIC | 65F | Cerebellar haemorrhage / pulmonary embolism | |28 Unnamed (choking/HIE) | 2022 | VIC | 57M | Hypoxic ischaemic encephalopathy — choking | |29 James Van Wyk | 2024 | VIC | 65M | Metastatic lung cancer | |30 Unnamed (Parkinson’s disease)| 2024 | VIC | 50M | Advanced Parkinson’s disease | |31 Unnamed (aspiration/heart | 2024 | VIC | 58M | Aspiration pneumonia — recurrent / heart failure failure) | |32 Frank Kastelic | 2025 | VIC | 61M | Epilepsy | |33 Unnamed (aspiration/MS) | 2024 | VIC | 61M | Aspiration pneumonia — multiple sclerosis |

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Table of Coroners’ Findings

Source: coronial.com.au | May 2026 Page 15

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Table of Coroners’ Findings

  passenger)

| 77 | T Ptjara and T Ptjara (brothers) 2025 NT — Multi-organ dysfunction — hypothermia | 78 | Unnamed (PE/FTD) 2025 VIC 54F Pulmonary thromboembolism — DVT — frontotemporal dementia | | 79 | Colleen Mary Chapman 2022 VIC 59F Myocardial infarction — ischaemic heart disease | | 80 | Unnamed (brain injury/MVC) 2021 VIC 53M Complications of old brain injury — prior MVC | | 81 | Grant White 2019 VIC 65M Cardiomegaly | | 82 | Catherine Myee Drinkwater 2023 VIC 41F Metastatic oesophageal carcinoma | | 83 | Alison Ruth Copeland 2014 QLD 55F Plastic bag suffocation | | 84 | Joel Charles Buckley 2026 VIC 50M Metastatic carcinoma — unknown primary | | 85 | Peter Owen Pilkington 2025 QLD 48M Gunshot wound to chest | | 86 | Catherine Drinkwater (duplicate) 2023 VIC 41F Metastatic oesophageal carcinoma | | 87 | Unnamed (fire/stroke history) 2023 VIC 54F Effects of fire — prior MCA stroke | | 88 | Anne-Maree Tammy Carr 2025 VIC 44F COVID-19 pneumonia | | 89 | Carl Robert Adler 2022 VIC 46M Cold environmental exposure — cardiomegaly | | 90 | Karen Lisa Heysham 2024 VIC 56F End stage Alzheimer’s disease — Down syndrome | | 91 | John Henry Hamilton 2024 VIC 67M Metastatic gastric cancer | | 92 | Randal Robin Wilder 2024 VIC 59M Aspiration pneumonia — Trisomy 21 | | 93 | Kristy Ann Mitchener 2026 VIC 45F Sepsis — sacral pressure wound | | 94 | Virginia Harris 2025 VIC 60F Non-operative management ruptured oesophagus (palliated) | | 95 | Joan Pauline Skillen 2025 VIC 93F Pneumonia | | 96 | Jeffrey Leigh Campbell 2024 VIC 54M Streptococcal septicaemia / aspiration — Down syndrome / dementia | | 97 | Ms Pollauszach 2025 VIC 54F Aspiration pneumonia — dysphagia / Down syndrome | | 98 | Paul Henry Green 2022 VIC 83M Unascertained (natural causes) | | 99 | Michael Patrick Doran 2026 VIC 56M Influenza B — epilepsy / Down syndrome / Alzheimer’s | | 100 | Melissa Jan Hadland 2024 VIC 55F Pneumonia | | 101 | Robert John Dosser 2025 VIC 69M Aspiration pneumonitis | | 102 | Julia Mary Case 2024 VIC 54F Pneumonia — cyanotic congenital heart disease | | 103 | Gerard Richard Bailey 2024 VIC 64M End stage Alzheimer’s — Trisomy 21 | | 104 | Jean Marrie Meuleman 2026 VIC 51F Complication of Parkinson’s disease | | 105 | Robert Easter 2024 VIC 63M Aspiration pneumonitis — ischaemic gut / dysphagia / CP | | 106 | Gaye Marie Darby 2024 VIC 58F Aspiration pneumonia | | 107 | Marina Norman 2024 VIC 46F Aspiration pneumonia — multiple sclerosis | | 108 | Timothy Hacking 2025 VIC 54M Cardiomyopathy (NOS) | | 109 | Ms L (cerebrovascular accident) 2022 VIC 45F Cerebrovascular accident

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Name / Identifier Yr Jur. Age/Se Cause of Death

                                            x

Source: coronial.com.au | May 2026 Page 17

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Name / Identifier Yr Jur. Age/Se Cause of Death

                                            x

Source: coronial.com.au | May 2026 Page 18

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Name / Identifier Yr Jur. Age/Se Cause of Death

                                            x

Source: coronial.com.au | May 2026 Page 19

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Name / Identifier Yr Jur. Age/Se Cause of Death

                                            x

222 Tyla Jade Hovenbitzer 2019 VIC 18F Multiorgan failure — malnutrition / Down syndrome 223 C (14-year-old girl — QLD) 2016 QLD 14F Hypoxic-ischaemic encephalopathy — choking / FAS 224 BQ (suppressed — NSW) 2025 NSW 23F Hypoxic ischaemic encephalopathy — hanging 225 Kathleen Earl 2024 TAS 58F Complications of poorly controlled T2DM 226 Rita Alimankinni (Pukumani) 2025 NT 47F Acute respiratory failure — COPD 227 Carney Schultz 2018 NSW 28F Complications of epilepsy 228 Unnamed (respiratory 2025 VIC 54M Respiratory failure — prolonged ventilation / sepsis failure/sepsis) 229 Kumanjayi Johnson 2026 NT 45M Environmental exposure and dehydration 230 WA — 13 deaths of children and 2019 WA — Hanging (12); open finding (1) young persons

Source: coronial.com.au | May 2026 Page 20

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

6. Synthesised Recommendations for Policy and Practice

The following recommendations synthesise coroner findings across the 230-case dataset. They are directed at NDIS providers, the NDIS Quality and Safeguards Commission, the NDIA, state and territory governments, health services, and the disability sector.

NDIS Quality and Safeguards Commission

1. Conduct regular unannounced compliance audits of registered SDA and SIL providers, with specific focus on pressure injury prevention, wound care, dysphagia management, and choking risk.

2. Mandate sector-wide learning from coronial findings — all registered NDIS providers should receive annual summaries of relevant coronial recommendations.

3. Require mandatory family violence training for all registered NDIS support workers as a condition of registration, and prescribe NDIS providers under state MARAM frameworks.

4. Establish a national serious incident review mechanism that analyses preventable NDIS participant deaths and publishes systemic findings publicly.

5. Require SDA providers accommodating participants with complex medical needs (quadriplegia, complex respiratory conditions, pressure injury risk) to demonstrate clinical competency before registration.

National Disability Insurance Agency (NDIA)

1. Review funding assessment frameworks for individuals with dual diagnosis of mental illness and intellectual disability — funding denials in this cohort are associated with prolonged institutionalisation and increased mortality risk.

2. Ensure NDIS plan assessments for participants with progressive neurological conditions (Huntington’s disease, Down syndrome/Alzheimer’s, MS) incorporate end-of-life care and palliative care funding pathways.

3. Implement mandatory advance care planning facilitation as a standard component of NDIS planning for participants with cognitive impairment or progressive neurological conditions.

4. Eliminate NDIS application delays for children and young people in out-of-home care — Territory Families’ 18-month delay in the case of Didbala Anzac must not be repeated.

5. Develop a specific NDIS pathway for individuals with psychosocial disability and intellectual disability who require Secure Recovery and Rehabilitation Units.

NDIS Providers — SIL and SDA Operators

1. Implement formal, current mealtime support plans for all NDIS participants with documented dysphagia or choking risk, reviewed annually and communicated to all service environments.

2. Adopt the International Dysphagia Diet Standardisation Initiative (IDDSI) framework, replacing ambiguous food texture descriptors across all settings.

3. Implement inter-agency communication protocols ensuring health, risk, and behaviour support information is shared in real time between residential providers, day programs, respite, and transport services.

4. Ensure all SDA participants have an identified Medical Treatment Decision-Maker (MTDM) and that advance care planning is documented before it is needed.

5. Implement 911/000 emergency response training for all SDA workers caring for participants with complex respiratory, cardiac, or seizure needs.

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Mental Health Services and NDS Mental Health Providers

Recommendations:

• Establish clear escalation protocols for ambulance calls — the 2-hour dispatch delay in the case of Lachlan Rayner must be addressed through provider protocols.

Actions Required:

• Conduct ligature risk audits in all inpatient psychiatric units accommodating NDIS participants — remove or mitigate all identified ligature points.

• Ensure comprehensive psychiatric history is transferred and accessible within 24 hours (not 6 days) when an NDIS participant transfers between psychiatric facilities.

• Develop NDIS-funded crisis support models that are explicitly integrated with clinical mental health services for participants with psychosis, treatment-resistant mental illness, and suicidal ideation.

• Train police who respond to psychiatric crises in de-escalation, and mandate inter-agency clinical information sharing before involuntary psychiatric transport.

• Establish NDIS-funded community-based supported living options with embedded clinical mental health support for participants transitioning from psychiatric inpatient settings.

State and Territory Governments

Recommendations:

• Prescribe NDIS providers under state MARAM frameworks (or equivalent) to enable information sharing in family violence risk situations.

• Develop Secure Extended Care Units and Secure Recovery and Rehabilitation Units to accommodate NDIS participants with severe mental illness, intellectual disability, and challenging behaviours who cannot be safely managed in community settings.

• Reform out-of-home care systems to ensure children with disability in state care receive timely NDIS applications and appropriate therapeutic support — not only OOHC placement.

• Fund ambulance response capability reviews for high-dependency NDS SDA settings, and establish clear protocols for dispatch prioritisation of calls from SDA providers.

Clinical Practice — Hospitals and Primary Care

Recommendations:

• Provide mandatory training for clinicians in acute hospital settings on managing patients with intellectual disability, Down syndrome, and dementia — including wandering risk, communication barriers, and clinical decision-making capacity.

• Develop hospital-based NDIS liaison roles to coordinate care planning, MTDM identification, and discharge planning for NDIS participants admitted to hospital.

• Anticipatory management of dysphagia, aspiration risk, and constipation complications should be integrated into hospital care plans for all NDIS participants with relevant conditions on admission.

NDIS-RELATED CORONIAL FINDINGS — AUSTRALIA Submission 1693

coronial.com.au | Generated 20 May 2026

Data Sources

1. coronial.com.au — NDIS search results (all 12 pages) — https://coronial.com.au/search?q=NDIS

Primary search database — 230 results extracted

2. coronial.com.au — Individual case findings — https://coronial.com.au/

Individual findings accessed via direct URL for each case; see Section 4 for case-specific URLs

3. NT Local Court — Inquest: Didbala Anzac — https://localcourt.nt.gov.au/

Full NT Local Court inquest finding — self-inflicted hanging, CASPA ITRC Katherine

4. Queensland Coroners Court — Finding: Bridie Gilligan — https://www.courts.qld.gov.au/ QLD Coroner finding — choking/Cornelia de Lange syndrome; Endeavour Foundation SIL

5. WA Coroners Court — Findings: Samaan Elsamin, Peter Bolton — https://www.coronerscourt.wa.gov.au/

WA coronial findings — NDIS funding denial cases

6. NSW Coroners Court — Finding: BQ, Ben Woodhouse, Forrest Kelvin — https://coroners.nsw.gov.au/

NSW coronial findings — psychiatric inpatient, escorted leave drowning, hospital fall

7. SA Coroners Court — Finding: Glen Haydn James McKinley — https://www.courts.sa.gov.au/CoronersCourt/

SA coronial finding — supported independent living, treatment-resistant schizophrenia

Where full finding text was not publicly accessible, information is based on page metadata, description fields, and supplementary news/government sources. This report does not constitute legal advice and should not be cited as a primary source.