Submission Profund 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

EXECUTIVE SUMMARY -
INTRODUCTION AND STANDING
DISTINCT COHOR TLEVEL 3 AUTISM (SEV ERGE IMPAIRMENTS)
CORONIAL AND JUDICIAL EVIDEN CE PREVENTABLE DEATHS SYSTEMIC FAILURE
NDIS RELATED CORONIAL FINDINGS SYSTEMIC FAILURES ACROSS SCHEME TO )
RISK TRIAGE ESCALATION INADEQUACY NDIA CURRENT FRAMEWORK
GENERALISABILIT Y TRANSFER ABILITY OTHER SEVERE PROFUND DISABILITIES
RESEARCH ADVISORY COUNC IL GOVERNANCE
THE BILLS EVIDENCE HIERARCHY EXTERNAL VALIDITY FOR LEVEL 3 COHORTS
RIGHTS LEGAL OBLIGATIONS
ANALYSIS KEY BILL PROVISION IMPLICATIONS PARTICIPANTS WITH PR OFOUND DISABILITY

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

Submission 1693

Profound Autism Network

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; systematic review coronial findings all Australian jurisdictions May identifying cases which was confirmed strongly suspected diagnosis deceased identified 104 cases in which autism was material factor circumstances death relevant Federal Court Administrative Review Tribunal jurisprudence affirming obligations Agency Australia’s under Convention Rights Persons Disabilities United Nations . The submission directed cohort characteristics can be identified precision Participants level Autistic criteria present severe communication deficits most being nonverbal minimal verbally profoundly absence safety awareness high risk elopement water seeking climbing selfinjurious pica behaviours complete near dependence others survival safety daily function American Psychiatric Association .The same applies other participants severe profound impairments including those intellectual disability cerebral complex needs requiring life sustaining supports equivalent presentations across multiple diagnostic categories All recommendations submitted are that profile not alone.

The Bill’s Legitimate Objectives Central Question

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 submission answers both questions in the negative: The central question for the Committee is whether those objectives contain mechanisms with sufficient safeguarding, or if they place participants at risk.

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

Submission 1693

Profound Autism Network

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 percent to autism research samples (Tager-Flusberg & Kasari; [Russell et al., #]). The most complex presentations are systematically excluded from intervention trials which draw their force(Sandbank et al.). That exclusion reflects structural features within design but does so without clinical need consideration.A statutory framework elevating such research to greatest weight without demonstrating its relevance before decision-makers undermines evidence-based practice.It entrenches inequity among those with highest support needs.The third involves families’ lived experiences, supported through Administrative Review Tribunal proceedings documenting consequences like family collapse or carer breakdowns leading up to economic devastation, adversarial review processes, even preventable death due under-support.

Key Risks Identified by This Cohort Submission identifies five structural risks requiring legislative correction:

Evidence hierarchy established gives primacy to published peer-reviewed generalizable research for determining effectiveness and benefits; this will elevate non-representative research on Level III Autism participants into determinate weights affecting life-preserving supports access creating a one-sided calculus constraining funding potential while lacking obligation to assess harm risk at low levels; The functional capacity assessment framework including proposed section (9B) definition rules under Section(3), produces inconsistent clinically inaccurate outcomes unless it includes specific criteria for non-verbal profoundly impaired high-risk participants. It must also require assessing the compounding effect of multiple impairments as whole rather than in isolation.

Profound Autism Network

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

Profound Autism Network

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, nothing insertion of aprovision prohibiting reduction funded belowsupports levelrequired maintainthe safetyparticipantwithLevelAutismandclinical necessary. Thirdly,the prohibition automated decision-makingsole determinant access plan value support typeparticipants Level Autismandequivalentsevereprofound levelofdisabilityhighriskprofiles requirement specialist human beforereview anysuch takeseffect. Fourthly , inserthuman rightsparamount consideration provision requiring CEO Agency giveprimaryconsideration Australia’s obligations under Convention Rights Persons Disabilities (United Nations2006)all exercises discretionunder Act treat best interests participantswith profund disabilityas apriimary consideratin decisions affecting them Fifthlystatutory recognition carersustainability core objectAct corresponding obligation respond immediately whencarer capacity provide safe care reaches pointcliniical contraindication . The Standard Against Which Bill Should Be Assessed The National Disability Insurance Scheme Act established principle people significant permanent entitled supports they need dignity safety full participation life communities effectiveness cannot measured only aggregate expenditure or numbers must be measured whether participants most complex needs obtain without unreasonable delay understand basisdecisionsaffectingthem exercise review rights in a

Profound Autism Network

Submission: Practical rather than merely theoretical approach ensures safe living without foreseeable risk due to insufficient funding. Amendments are specific, practical, proportionate, do not undermine sustainability objectives; support Australia’s human rights & Scheme purpose.

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 manner compatible with Australia’s human rights obligations and with founding purpose Scheme.

National Disability Insurance Scheme Amendment

Submission: Securing NDIS Future Generations Bill 2026 - Submission No.: 1693

Profound Autism Network

Scope of this Submission

This submission primarily represents people diagnosed as having Level III autism according to DSM5 criteria from American Psychiatric Association in year 2013. Participants within our scope have severe or profoundly impaired functioning profiles rather than just being classified based on their diagnoses alone.

Communication: Little ability (if any) speaking/writing/signing/using communication devices functionally;
Cognitive Ability An IQ below < 50; equivalent adaptive functioning impairment is also considered here, Care Requirements: A need for continuous supervision (around-the-clock) care due daily living tasks/safety concerns; High-Risk Behaviours: documented elopement behavior/self-injury/pica/climbing/choking risk/catatonia etc., such behaviors are life-threatening risks, Transferability: every recommendation applies equally across all participants with profound impairments who exhibit one more characteristics regardless primary diagnosis includes those with intellectual disability/severe cerebral palsy complex needs and similar presentations neurodevelopmental acquired genetic disabilities categories. To demonstrate systemic failures broadly throughout the Scheme, we draw upon a systematic review covering coronial findings identified using keyword “NDIS” over Australian jurisdictions up until May 26th, 2026 at coronial.com.au.

The Bill’s Application to this Cohort

The amendments in `Bill’ regarding functional capacity assessment evidence hierarchy permanence support determinations apply uniform framework which fails recognizing distinct risk profiles and support requirements of our cohort. Standardized assessments tools generalizable research placed primarily weight by bill have not been validated non-verbal individuals profoundly impaired high-risk behaviours (Tager-Flusberg & Kasari). This legislative scheme systematically underestimates intensity supports required maintain safety prevent harm for these cohorts, The Government has repeatedly stated that no need diagnose access National Disability Insurance Scheme yet elevation generalized research standardized functional capacity assessments reintroduces diagnostic-linked evidences hierarchies disadvantages precisely those whose most severe least amenable population-level research internal contradiction undermines schemes foundational promise individualised based on participant level III

Profound Autism Network

Autism and equivalent severe and profound impairment are at risk of arbitrary exclusion due to supports needed for safety.

The Bill’s evidence hierarchy, functional capacity changes, potential caps on support funding disproportionately harm this cohort because standardised assessment tools aren’t validated for non-verbal individuals (Russell et al., 2019). Carer burnout is documented in fatal outcomes involving four cases where parents killed their autistic children between January-May 2026 during total system failure or collapse as shown below Section III: Coronal Analysis.

Illustrative Case Example - Persephone

Persephone’s experience illustrates how unamended legislation will exacerbate systemic issues across her age group:

Functional Capacity less than one percent compared with peers,
Developmental level similar that an infant aged twelve months while younger sister surpasses developmental milestones up until five years old despite being two years older.

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

Submission 1693

Profound Autism Network 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, Persephone’s daily reality maps precisely match Level 3 criteria in DSM-5 from American Psychiatric Association(2013). She is not quirky autistic; she has significant impairments caused primarily because of her disability.She requires full legal regulatory funding architecture under NDIS scheme to survive.The same holds true participants with equivalent severity and profundity whose impairment places them at comparable risk and their function profiles fall within scope set out definition box above. This case demonstrates why safeguarding participants having level three autism or similar severeness and profoundly impaired must lie heart any reform to that scheme.Evidentiary administrative burdens already placed families breaking point dismissal Clinical Evidence adversarial settings application generic intensity reductions ignore foreseeability harm these failures scale unless Committee recommends explicit legislative safeguards only then will Scheme give genuine effect statutory purpose enabling participant live dignity exercise choice control participate social economical life equal basis others

Required Legislative Safeguards

The Committee should recommend Bill amended insert Statutory Definition High-Risk Participant proposed new section 34A require decisions affecting this cohort including any reduction supports subject mandatory multidisciplinary clinical review before taking effect legislation further provide absence generalisable research shall constitute ground refusing capping reducing supports for

Profound Autism Network

participants who meet Level 3 Autism criteria or equivalent high-risk functional profiles, as defined top level text above. These safeguards are not novel impositions on the Scheme.They give legislative expression to what the coronial record,the Federal Courtandthe Administrative Review Tribunal have already recognized:that participants withLevel 3Autismandequivalent severe and profound impairmentoccupy adistinctclinicalandlegal category,andthatchanges of treating themas interchangeablewith then broader participant populationare fatal.

CORONIAL AND JUDICIAL EVIDENCE: PREVENTABLE DEATHS AND SYSTEMIC FAILURE

Australia hasalready experienced consequences offailing to safeguard participants withevel 3 Autismandequivalentsevere profund impair ment.A systematic review corion al findings across all Australian jurisdictions tomay 2026has identified cases in which autism wasa confirmedor strongly suspected diagnosisof deceased(coronial com au ,2026). These casesspan tenjurisdiction sandeight thematic categories.with Victoria accounting for per centoffindings.That dominance reflects Victorias robust proactivecoronal documentation practices.Other states territories maintain significantly less comprehensive reporting processesfor deathsinvolving people disabilityproducing substantial underreporting an incomplete nationalpicture mortality risk autistic individuals.The dominant themes drowning el opement choking aspiration suicide selfharm inadequately supportedindividuals medical diagnostic failure attributable communication barriers,deaths NDISfunded settings where supervisiondocumentation interagency coordination wereidentified as deficient.Thesefindings demonstrate recurring structural deficienciesrisk identificationsupervision environmental safeguardsandinter agencycoordination that arenational pattern span more than two decades.Systemic Failures Identified by CoronersThe coronal record constitutes clear repeated notice Commonwealth current National Disability Insurance Scheme framework failing protect this cohort.Crosscutting systemic failures identified coroners include absence ofautism specific clinical protocolsemergency anddisability services;chronic interagencycommunication breakdownsabsence ASDadaptedsuicide risk assessment tools inadequate oversightby theN DIS Quality Safeguards Commission high-risk cohorts (coronial.com.au.2026).

Profound Autism Network

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

Submission 1693

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

Submission 1693

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\tto divert participants away \from NDIS-funded safeguards without addressing this record would be to knowingly repeat preventable failureswith fatal consequences.`

Required Legislative Safeguards`

The Committee should recommendthattheBillbe amended torequirethetheNationalDisabilityInsuranceAgencyandthenNDISQualityandsafeguardCommissionimplementthesevere`and profounddisabilityriskescalationToolas themandatoryrisktriageinstrumentforparticipantswithLevel `3Autismandequivalenthigh-riskpresentations.Thelegislationmustestablishanationalparticipantdeathreviewprocesswitmandatorypublicreportingand mustembedastatutory escalationrightinnewsection`,modelledon thenSWHealthRAISEITframework,enabling

participantotheircarerto triggerurgentmandatoryinterventionwhenthesesystemis failingtoprovidenecessarysafeguards. `` ThesBilmmustfurther mandate independent oversight anda public reporting on all participant deaths,together with a requirementtha tdeathsoccurringwhilea particpants inreceiptof NDIS-fundedsupports,or within adefinedperiodfollowingthewithdrawaloreductionofsuchsupports,besubjecttocoronalinquest.These reformsmuestexplicitly encompass deathsarising from carer collapse,neglect and violence,e nsuring that thesystemiclessons documented intables12are translated into binding legislative obligations across these Scheme.`

4. NDIs-RELATED CORONIAL FINDINGS: SYSTEMIC FAILURES ACROSS THE SCHEME (2014 TO 2026) A separate`and equally compelling body of evidenceemergestfrom asystematic reviewo f\tNDISkeyword coronial findingsacrossallAustralianjurisdictionsto May` 2026(coroni al.com.au,

t2026).These casesinvolveNDSIparticipants,NIDSfund edproviders`,NIDSFundingdecisions,andtheoperationofthenD SIQualityandsafeguardCommission.Victoriaaccountsfor89percentoffindings,re fl ectingitsrobustaproactivedcoronialdocumentationpractices.Othersstates

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

Submission 1693

Profound Autism Network

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

The findings constitute direct notice to the Commonwealth that the current National Disability Insurance Scheme framework is failing to protect participants with complex needs due to funding denials or delays contributing directly to prolonged institutionalisation, inadequate care, or death. The dominant themes are consistent across all territories over its operation period:

NDIS Funding Denial: Cases where funding refusals led to prolonged institutionalization; key cases include Samaan Elsamin, Peter Bolton, Didbala Anzac, Kelvin Forrest & Andrew Barr examined in detail below;

Aspiration pneumonia/choking: Leading cause among preventable deaths linked consistently to absent mealtime support plans, inter-agency communication failures, classifications. Key case: Mark Capovilla;

Suicide/self-harm: Deaths attributed mainly from lack crisis support ligature risks facilities gaps between funded mental health supports clinical psychiatric services;

Family violence/homicide: Cases where providers not integrated into state Multi-Agency Risk Assessment Management frameworks resulting missed opportunities coordinated response;

SDA provider accountability/clinical skill gap: Pressure injuries wound care failures inadequately competent Specialist Accommodation settings. Key case Kristy Ann Mitchener;

Restraint/use of force acute behavioural episodes: Death arising communication failures during transport and acute episodes. Key case Ricky Broughton

Drowning/elopement NDIS setting: Inadequate risk assessment community leave transitions secure facilities. Key cases Benjamin Woodhouse Carl Adler Cameron De Vries.

Submission 1693

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

Submission 1693

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. The reforms must apply across the full spectrum of NDIS-related mortality including deaths arising from funding decisions provider practice inter-agency coordination failures.The 230 coronal findings considered alongside the autism-specific coronal findings additional media-reported deaths autistic children addressed Section establish body evidence Committee cannot responsibly set aside.NDIS funding decisions providers accountability interagency communication effectiveness Commission matters life death The bill embed safeguards prevent documented failures recurring.

Risk Triage And Escalation: Inadequacy NDIA’s Current Framework

The internal Escalation Prioritisation Matrix maintained national disability insurance Agency dated November not adequate task identifying responding imminent risk serious harm participants Level and equivalent severe profound impairments generic risk management instrument treats participant safety one category among ten without specific triggers behaviours circumstances repeatedly identified coronial findings contributing preventable death. deficiencies current matrix does elopement water-seeking choking self-injurious behaviour pica catatonia independent high-risk requires immediate escalation it recognises carer psychological deterioration burnout medical contraindication sustained caregiving direct contribution coronial record documenting their directly contributes participant deaths familicide contains mechanism for participants carers trigger mandatory when they identify an imminent that agency has yet recognised responded permits exhibiting multiple documented high-risk classified at Low or Medium priority because do align with matrices’ categories.\nThe deficiencies are hypothetical They across coronial findings Sections 4, Administrative Review Tribunal proceedings families reported imminent of have been required wait months plan reviews while remained unaddressed.

Profound Autism Network

The Severe and Profund Disability Risk Escalation Tool

A superior framework has been developed in consultation with clinicians, industry experts, and families with lived experience navigating NDIS under high-risk circumstances. The Severe and Profund Disability Risk Escalation Tool is clinically grounded, cohort-specific, calibrated towards functional realities associated with level III autism equivalent severe/profound impairment.

The tool uses clear tiered structure: LOW/MEDIUM/HIGH/EXTREME/ CHANGE OF GOAL / CRISIS TRANSITION.It distinguishes between Automatic Qualifiers (single indicator) Sub qualifiers(multiple indicators). it does not automatically classify as at high risk solely on diagnosis alone.it requires specific observable risk across multiple domains including:

documented elopement/water-seeking/climbing or absconding behavior without safety awareness;
choking risk/pica/catatonia requiring medical intervention;
carer mental health deterioration/burnout/compassion fatigue/or certification that sustained caregiving contraindicated;
cumulative harm to participant/carers/others arising from inadequate supervision/support;
loss of informal care capacity due to carer illness/injury(withdrawal); system failure/safeguard escalation at the Extreme level(participant/carer notification imminent RAISE IT mechanism.)

The Standard State Applies Other High-Risk Contexts

When a police officer/military emergency worker presents acute psychological distress receiving unfit for duty certificated responsible authority immediately removes them active duty safeguard measure public. That response reflects recognition certain roles life-death responsibility continuing perform those while psychologically physically creates unacceptable risk. Primary caregivers children with Level 3 Autism occupy equivalent position manage constant, high-stakes,life-and-death-risk no self-protect call help rotation system welfare checks stepping down.

Profound Autism Network

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.

c## Required Legislative Safeguards

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 Severeand Profound Disability Risk Escalation Tool (detailed in Appendix A), or an equivalent clinicallyvalidated instrument, as the primary risk triage framework for participants with Level 3 Autism andequivalent severe and profound impairment.

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

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

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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 cases is assessed as inadequate. The reforms would ensure that the Agency applies an adequate standard of risk identification and escalation according to its responsibilities documented within coronial records.The preventable deaths mentioned Sections 3 &4 were inevitable.They resulted from inadequacies inherent risks management frameworks designed protect specific cohorts.Bill cannot entrench such ineffectiveness. Full Risk Escalation Tool clinical triggers classification criteria provided Appendix A.

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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 generalisable research as greatest weight for determining whether supports are effective and beneficial; such studies systematically exclude those with profoundly impaired individuals [Russell et al., Tager-Flusberg & Kasari]. it introduces changes relying on standard tools validated solely through verbal assessments which may misrepresent non-verbal participants’ abilities. These modifications incentivise agencies away from services designed specifically towards high-risk long-term care requirements. The bill also contemplates caps based upon data excluding critical groups requiring intensive support systems. The Government claims otherwise but the legislation effectively becomes diagnosis-based because it provides adequate assistance exclusively when impairments align precisely within populations studied via these exclusionary methodologies. People suffering rare complex conditions - most at risk preventable death – face systematic disadvantages due this approach being fundamentally inconsistent both foundational principles of scheme and Australia’s obligations under Articles five nineteen Convention Rights Persons Disabilities (United Nations) ensuring equality nondiscrimination regardless disability type or communication modality.

Required Amendments:

The Committee should recommend insertion new section three C into National Disability Insurance Scheme Act two thousand thirteen Commonwealth following terms:

Proposed Section 3C Whole Person Impairment Non-Discrimination

(1). In administering act CEO Agency must assess each participant whole person functional impairment needs not by reference to diagnostic categories population averages derived research excludes under-represents people profound complexity disabilities.(2). No Participant shall be disadvantaged access supports intensity duration funded reason their impairment profile communication modality adequately represented published peer-reviewed research.

National Disability Insurance Scheme Amendment

Submission: 1693

Profound Autism Network

(3) Where participant’s impairment assessed as permanent under section [24], permanence shall accepted without requiring exhaustion interventions clinically futile or contraindicated individual presentation. The provision gives legislative expression scheme foundational promise supports determined functional need not diagnostic label nor research availability It ensures bill’s evidence hierarchy function capacity provisions do operate indirect form discrimination against cohort most complex least-researched presentations.

INDEPENDENT RESEARCH ADVISORY COUNCIL FOR EVIDENCE GOVERNANCE The Bill’s evidence hierarchy gives statutory primacy published peer-reviewed generalisable research determining whether supports effective beneficial As addressed Section that will foreseeably disadvantage Level Autistic equivalent severe profoundly impaired because systematic excludes represents this cohort (Russell et al., (2019), Tager-Flusberg & Kasari,

(2013). The appropriate remedy is reject evidence-based practice ensure Agency appropriately interpreted limitations identified documented decisions cohorts absent from base informed individualised clinical lived experience rather than extrapolation non- typical samples.

a. review generalisability external validity of relied upon by in access planning support determination decision particular attention to systematically excluded intervention trials; b. identify gaps for participants profound and disability including non-verbal minimally speaking high-risk behavioural profiles First Nations culturally linguistically diverse participants;

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

Submission 1693

Profound Autism Network

(c) To provide binding advice to the CEO regarding appropriate weighting between published research, individualized clinical evidence, lived experience evidence; affecting underrepresented groups; d(d) Commission oversight severe profound impairment support needs longitudinal studies intensive outcomes Level Autistic equivalent presentations. e(e) Report publicly Parliament agency compliance with evidence-based practice principles including giving primary weight where generalized does represent participant circumstances. f(f) Make accessible all Australians.

Composition Governance

The council should have equal representation from three constituencies: aacademic researchers demonstrated expertise disability neurodevelopment synthesis;bpracticing clinicians expert severe profoundly impaired behavior practitioners allied health professionals;cpeople living experienced people profoundly disabled family carers of people with profound disabilities. The lived constituency must include quota representing minimally verbal non-speaking autistic individuals caregivers level autism or equivalently severely profoundly impaired rural remote areas First Nations participants culturally linguistically diverse participants and care providers. council adequately funded perform functions commission independent research convene expert panels publish findings its interpretation application specific cohorts must be binding subject merits review Administrative Review Tribunal ground material error fact law.

Accountability Reporting

council annual report detailing Agency reliance generalizable research not represented in that research identify decisions which applied beyond validated scope recommend systemic reforms Agency’s evidence

National Disability Insurance Scheme Amendment

Submission: [NDIS] Securing Future Generations Bill - Submission No.: 1693

Profound Autism Network

This model ensures that the bill’s evidence hierarchy operates correctly while preventing it from acting as an unnecessary barrier.

Section Title: THE BILL’S EVIDENCE HIERARCHY AND EXTERNAL VALIDITY FOR LEVEL 3 COHORTS

Subsection Content:

The bill introduces statutory criteria giving “greatest weight” where research meets certain standards but presents risks due its application on those needing most support, such as systemic under-funding life-preserving supports for participants requiring more complex care needs.

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations - Submission 1693

Profound Autism Network

Risk behaviours. Therapy packages are routinely reduced from the range of 20-to-redacted: hours per week to redacted:** hours* weeks by reference to this study. The methodological difficulty is not that the study is poorly conducted.The difficulty external validity: is applicability its findings children in highest need cohort.Sandbank et al.(2024) sample characteristics including total sample size mean participant age sex distribution, does report proportion minimally verbal or non-verbal participants pooled sample; Level autism severity classifications proportions participants profound adaptive impairment stratified analyses communication modality; or stratified analysis by severity degree functional impairment.This omission significant.Minimally verbal comprise approximately percent autistic population Tager Flusberg Kasari, yet appear little as approximate two cent autism research samples Russell et al., A meta-analysis does not stratify communication diagnostic severe profoundly high-risk behavioural profile cannot safely treated determinative evidence appropriate therapy dosage child presenting with level three autism absent function global developmental delay extremely low adaptive functioning.Consequence treating such a study primary evidentiary benchmark consequence minor calibration error structural application population-level averages derived systematic excluded very whose safety depends individualised intensive clinically directed support system elevates such research statutory greatest weight without requiring demonstration subgroup applicability will foreseeably produce scale decisions are referenced but not sense for this population

The Risk of Insufficient Supports: Safeguarding Gap Bill Does Not AddressThe Bills evidence hierarchy drafted creates one-sided risk calculus oriented principally toward constraining what may funded corresponding mechanism assess harm arises funding set too low asymmetry directly inconsistent express caution authors most frequently invoked justify reduction Sandbank et al. (2024) states:

National Disability Insurance Scheme Amendment Bill

Submission Profound Autism Network

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 and potentially optimal amounts that depend on individual child characteristics; current evidence does not offer clear values or ranges, pages 771-779. The cautionary note about under-supporting Level III non-verbal autism cases isn’t theoretical: documents deaths from abscondings, drownings & road traumas where supervision was inadequate (Section 3). These outcomes highlight insufficient treatment as live safeguard issues. Current draft legislation doesn’t require decision-makers address this issue directly. Any amendment without corresponding obligations assessing harm risks being incomplete policy-wise.

Administrative Patterns: The Evidence Hierarchy in Practice

The administrative effects aren’t hypothetical; recent tribunal decisions show reliance reducing therapy packages for Level II Autistic children from ~20 hours/week down to around half based solely population-level dosage estimates not representative their profiles.

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, an 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 researc h.As articulated by Spencer et al.(2012)in adecision-makingframework adaptedfor usebytheAutism Centreof Excellence at Griffith University,“best availableevidenc e”is theevidence mostrelevanttothedecision contextthat offersthegreatest degreeo fcertain tyforthespecificpopulationconcern ed.The framework ise xplicit thate methodologically rigorousresearch can bemisapplied where there populat ionstudieddoesnotcorrespondt othere pop ulationbeing decidedf or.Externalvalidityandcontextualfitare n otsecondaryconsiderations.They arefundamentaltot helegitimateexerciseoevidencebasedjudgment.Where generalisable peer-reviewed eviden ce do esno t exist fora specificcohortdue toustructural under-representationinthere searchliterature,theBill’s evidenced hierarchymustbe construed,and ifnecessary amended,torequiretheadcisionmaker togiveprimaryweighttorandomised controlled trialsandsingle-case experimental designs involving participants incomparablecircumstances,evenwhere sample sizesaresmallanda ndformalgeneral isabilityisl imited;individualised functional capacity assessmentsandriskassessments conductedb ytreating clinicianswithdemonstratedexpertiseinseverelandprofoundautismprogressmonitoringdata andfunctional outcome evidence specifictothet individualparticipant;a nd coronial,child-protection,a nd NDIS Qualitya ndSafeguard sCommission findings regardingparticipantsorchildreninlike circumstances. The analogy to cardiovascular researchisinstructiv e anda hasbeenrecognisedas such in thebroader literature on rese arch inclusionande xt ernal validity.For many years,cardiovascular interventionresearch reliedpredominantlyonmaleparticpants.The consequence was that women’redacted

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

Submission 1693

Profound Autism Network

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 directly reflect the population being treated (Tobb et al.,). The parallel analogy holds true: methodologically sound research applied beyond its validated population produces systematic harm. not due to flawed scientific principles; rather it’s an issue with inappropriate generalization.The same structural error arises in autism research when applying population-level findings without considering profoundly impaired minimally verbal participants who may lack representation within studies generating those conclusions.

Statutory “Like Circumstances” Test

The statutory task under section section of [the] National Disability Insurancce Scheme Act extit{Act} $[2013]$ $(Cth)$ and rule $ extbf{ extit{rule}}$ .$ extit{(Supports}$ .$Participants) extit{$Rules} extit{}(2013),$ requires decision-makers consider whether a support is likely effective and beneficial for others

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations - Submission 2026

Profound Autism Network

The Committee should recommend insertion of a new subsection in section proposed section A. (3A) Subsection does apply; instead, give primary weight to individualised clinical & functional evidence from treating allied health practitioners, behaviour support specialists etc., if participant: a) meets DSM-5 criteria; b) has minimal/no communication; c) documented history of elopement/attraction to water without awareness of drowning risk/choking/dysphagia/self-injurious or other high-risk behavior requiring constant supervision.

Explicit obligation assess under-support (PRIORITY AMENDMENT)

The Committee recommends inserting into “effective beneficial” provision, new section (d) to determine whether supports are effective/beneficial for participants meeting Level III ASD/DSM-5 equivalent profound impairment with no/minimal speech and high-risk profile, give primary weight on:i) clinician assessments ii) actual gains/regressions/safety incidents iii) coronial findings concerning similar cases. do not treat subgroup-stratified data absence as determinative over matters identified above.

Independent review generalisability classifications The Bill must require research classified ‘generalisable’ reviewed/approved by the proposed Section 6 Council. This would address inherent conflicts.

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

Submission 1693

Profound Autism Network

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. The requirement is directly consistent with the express caution of the authors of the study most frequently relied upon in dosage decisions: to specify minimum amount intervention needed benefit all, optimal amount dependent individual child; current evidence does not offer clear values ranges amounts [Sandbank et al., p771]. If this reason decline specify minimum optimal dose threshold it sufficient reason require ceiling high-risk participant accompanied document consequences ceiling participant.

Proposed Amendment 5: Published evidence framework severe profoundly autism

Agency required publish within months commencement specific evidence framework strategy severely profoundly autism developed partnership Independent Research Advisory Council families carers lived experience level complex presentations. Framework identify categories primary weight where population-level generalizable research represent cohort process which clinical evidence received weighed documentation individual decision The hierarchy introduced can advance quality consistency many participants For participants Level Autistic profound functional impairments minimal absent communication documented risk without adequate support however draft presents foreseeable serious entrenchment superficially referenced substantively unjust amendments above would undermine Bill’s legitimate objectives ensure statutory consideration about others like

National Disability Insurance Scheme Amendment

Submission: 1693

Profound Autism Network

circumstances“ is applied in a manner that requires genuine correspondence between the research relied upon and the cohort being assessed. The NDIS was established to advance the dignity, autonomyand full social participation of peoplewith disabilityon an equal basis witheach other.That purposeisnot servedbya frameworkthat givesstatutoryprimacytoresearchthatsystematicallyexcludesthepeoplewithesthreatestneedforitsprotection.The amendments proposed here would align the administrationoftheschemeboth its rights-based foundation anda practicalobligationtothoseitwasmosturgentlydesignedtoserve.

HUMAN RIGHTS AND LEGAL OBLIGATIONS#### Australia’s International ObligationsTheNDISwasestablishedinparttogive domestic effecttoaustralia’sobligationstothe ConventionOntherightsOf Persons withDisabilities(United Nations,2006),towhichAustraliaisa party.ThetheBillmustthereforebeassessed notonlyagainstthestatedpolicyobjectivesbut againstwhetherits provisionssarecompatiblewith those obligations.TherestatementoocompatibilityWith Human Rights accompanying The Bill does notaappear toeffectively addressthedispersionate impactof theevidence hierarchy.functional capacity provisions,and intensity limits on participants

with profounddisability,minimalfunctionalcommunication ,an high-risk profiles. That omission is itself a matter requiring Committee’s attention. Ther CRPD articles most directly engaged by the Bills provisions include then following: Article 3 establishes general principles of convention including respect for inherent dignity, autonomy,nondiscriminationand full and effective participation inclusion in society (Unite dNations) Any provision that systematically restricts access to supports forthecohortwithesthehighestand complex needsengages theseprinciplesdirectly. Article7 requiresthatinallactionsconcerning children wit disabilities,the best interests disabledchildren have therightto express their viewson all matters affecting them.United nations any obligation give primacytheirbestinterestsfallsentirelly State as theycannot exercise voiceadministrative processThatobligation cannot be discharged reliance researchdoesnotrepresenttheircircumstances.

National Disability Insurance Scheme Amendment

Submission: Profound Autism Network Article (1) affirms the inherent right to life. States Parties must take all necessary measures to ensure its effective enjoyment by people, on an equal basis as others. The coronial record establishes: certain risks from absconding, drowning or road trauma if not adequately funded supervision. a framework incapable addressing those risk engages obligations directly.

National Disability Insurance Scheme Amendment

Submission: [NDIS Amendement](Securing NDIS Future Generations) - Submission No.: [1693]

Profound Autism Network

Article (\text{Art}~{}^{28}): Affirms right towards adequate standard living & social protection including assistance w/ disab.-related expenses.

Right To Life Under ICCPR (International Covenant On Civil And Political Rights)

The right under Art-6, imposes positive obligations upon State, requiring it take reasonable steps toward protecting individuals whose lives face real immediate risks; this obligation has been established in international human rights law as per coronial records showing children wit Level 3 autism without NDIA-funded intensive supervision & specialist supports face such life-threatening risks (Sections and ). Where knowledge exists but funding frameworks fail to address these needs, directly engaging state’s duty-to-protection responsibility through inadvertence or institutional inertia rather than deliberate action. It suffices not to characterize bill’s intent negatively for its design may breach positive human rights via negligence, lack of attention on most vulnerable cohorts’ circumstances, or inadequate consideration thereof. The Committee must determine whether the Bill protects life adequately within this group or predictably reduces likelihood that those needing support receive sufficient aid.

Structural Conflict Of Interest

Internal research obtained from Freedom Information Request 24/05-0380 reveals that NDIS’s Technical Advisory Branch produces generic literature reviews intended solely internally which do not cater distinct needs of Level (\text{Level}~{}^{1}), minimally verbal, high-risk groups. Amongst released documents are no stratified findings by DSM severity level, communication modality nor high risk behavioral profile despite multiple papers addressing ASD interventions and supports (NDI Agency). The agency prioritizes meeting financial KPIs and scheme sustainability targets; allowing it itself decide what constitutes “generalisable” evidence in statutory hierarchy creates inherent conflict-of-interest leaving profound disability participants at heightened exclusion risks based instrumentally convenient criteria instead clinically or legally sound ones; such conflicts remain unresolved per Statement On Compatibility With Human Rights as a structural feature requiring independent check.

Profound Autism Network

The inadequacy of the Agency’s approach to risk and mortality is compounded by broader systemic failure.

NDIS Quality” Safeguards Commission’s own scoping review acknowledged (Salomon & Trollor) five years later, time-and labour-intensive manual review remains unaddressed. The absence systematic flagging tracking meansAgency cannot learn from preventable deaths even when coronial findings identify clear patternsof systemic failur.

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

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.

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, inintegrity measures , governance including automated decision-making . Thesechanges are presented,in the Explanatory Memorandum as technical refinements directedat scheme sustainabiltyand improved consistency.Their collective effect however,isto shiftthescheme toward a more restrictive,evidence-hierarchy-driven anda ndcost-containedmodelof accessandsuppor t determination. For participantswith LevelAutismprofound adaptive impairmentminimal or absentfunctional communication,and high-risk behavioural profiles each thesechange carries particular risk.T he following analysis addresses principal provisionsin turn proposes specific legislativeamendments for Committee’s consideration.

Functional Capacity Proposed Section9B

 Th e introductiona statutarydefinitionoffunctionalcapacityisawelcome reforminso faras it provides common frameworkfor assessment. T hedefinition,substanceidentifies aperson's abilityt undertake an activity without assistance fromother people assistive technologyor modifications assessed by reference ton intrinsicimpairmentexcluding environmental personal circumstances.
The exclusion off environmentalandpersonalcircumstancesfromassessmentfunctionalcapacity is importantmust be applied consistently.Fora child withLevel3 Autism thatexclusion prevents the Agency treating presence of intensive paid supports evidence

Profound Autism Network

The category A NDIS Rules under proposed section 9B(3) should include: a) Specific classifications or thresholds. b) Mandate assessors consider non-verbal communication profile, danger awareness issues, high-risk behaviors like absconding to ensure safety supervision needs are met; c) Allow clinical determination based on DSM-5 Level 3 criteria for reduced functional capacity across multiple domains without requiring further standardised tests where such testing cannot be validly administered.

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations - Submission 1693

Profound Autism Network

For Level 3 Autism, the position is unambiguous from an aspect of clinical science: Impairment remains permanent throughout life American Psychiatric Association, as stated in their publication dated (2013). Evidence-based interventions such as behavior support, augmentative communication methods like AAC ( extbf{Augmentative — Alternative Communication}), environmental modifications to enhance safety or quality-of-life conditions are beneficial but do not alter underlying severe disability nor eliminate ongoing substantial care requirements; there exists no curative treatment specifically designed solely towards this level of severity according to credible medical authorities.

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

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 behavioral profiles, no other service system can reasonably meet their needs, and none should be expected.

The reasons are structural and documented. Mainstream early childhood education settings and schools do not have funding, staffing ratios, specialist training, legal authority to implement regulated restrictive practices that provide continuous one-to-one supervision necessary basic safety. Child family services out-of-home care systems coronial parliamentary inquiries consistently found inadequately resourced safe environments complex needs Health Systems episodic acute subacute care daily living supports core what this cohort requires Community-based programs designed mild moderate developmental presentations explicitly inappropriate level-3-autism. Applying “can reasonable met” test without legislative safeguards repeats category error contributed adverse outcomes including deaths breakup relinquishment into out of home care see Section).

Proposed Amendment The bill amended insert new subsection note interpretive force relevant access eligibility provisions stating person whose impairments meets DSM criteria level-3 autismspectrumdisorder clinician expertise equivalent severe profound needs taken requiring Scheme Diversion other service does constitute a reasonable alternative for this cohort.

Planning Reassessment Reasonable Necessary Supports Submission sensible controls unscheduled reassessments measures improve consistency support determinations legitimate objectives identified as priorities NDIS Review Three specific concerns arise however First children with Level 3 autism frequently experience genuine sudden significant changes in support carer breakdown behavioral escalation medical

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

Submission 1693

Profound Autism Network

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. The principles governing reasonable and necessary supports under section 33 must continue to recognise that for participants Level 3 autism and high-risk safety profile, cost containment is an inappropriate alternative to adequate funded support as it leads directly into: family collapse, involvement out-of-home care serious injury or death which are costs falling on participants families other public systems not reflected scheme expenditure figures.

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

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\ncanonicalize:and require mandatory specialist human review \for any decision concerning participant or prospective participant withe diagnosed or clinically suspected Level 3 autism presentation,or wheretheparticipant’s records disclose absconding,watervseeking,self-injurious behaviour requiring medical intervention , or requirement two-to-one constant supervision .

Pricing Determination :Schedule part 1

Pricing determinations must reflect actual verified cost of supports required this cohort The in question include specialistsbehaviour practitioners,intensity supported independent living one -toone staffing ratios crisis response capacity are not susceptible price compression without directly affecting quality continuity safety care Where pricing determination set rates that do coveractualcost delivering these supports consequence is saving accrues participants It transfer onto families hospitals emergency services justice system circumstances severe human cost thattransfer integrity scheme sustainability case depends accounting those downstream costs expenditure within schemes own budget

Proactive Safeguards Underrepresented Cohorts Whole Person Impairment Assessment

The Bills evidence hierarchy will operate neutrally across full diversity NDIS participants impact fall most heavily cohorts published peer reviewed generalisable research scarce absent needs less real urgent because excluded systematic research privilege the Bill s evidence hierarchi operates neutrality across ndis participants its impact will fall heaviest on cohorts for whom published peer-reviewed and generalizable research is scarce or absent. Not their needs less real but because they have been systematically excluded fromresearchthathierarchy privileges. ThecohomsmostdirectlyaffectedincludeFirstNationsautisticpeople intersection disability cultural identity systemic disadvantage produces support needs rarely addressed mainstream intervention research; culturally linguistically diverse participants face additional barriers language,-cultural mistrust limited access toculturally safe assessment processes non-verbal minimally speaking participants cannot self-advocate report pain distress whose support needs least likely captured standardised instruments ;andparticipantswithintellectualdisability high-risk behavioural profiles including documented elopement water-seeking ,self-

P a g e 42

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

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\nframework for decisions affecting them, or to ensure that the absence of generalisable research does
does operate as structural ground denying or capping supports. That omission consistent with Australia’s obligations Articles (United States, 5), and €;of Convention on Rights Persons Disabilities (UN, 2006)“, which require State take proactive measures equality combat indirect discrimination people disability can access information services equal basis others Recommendation Committee should recommend insertion new section Proactive safeguards underrepresented cohorts whole person impairment assessment full text set out Section this submission provision would CEO proactively identify participants belonging underrepresented cohorts apply whole person impairment assessment decision affect them give primary weight individualised clinical lived experience evidence where generalisable research limited absent The entire person impairment requirement operationalises like circumstances argument made throughout this submission requires decision-maker consider compounding effect multiple diagnoses interaction between impairments directly relevant Level cohort autism intellectual disability communication impairment high-risk behavioural profile interact produce support need exceeds single diagnosis suggest isolation First Nations culturally linguistically diverse warrant specific acknowledgement barriers faced communities accessing Scheme adequately addressed by Bills current provisions Cultural safety assessments making not peripheral matter precondition accurate assessment exercise genuine choice control workforce capability framework developed proposed section E specifically address cultural competency requirements decisions affecting First Nations culturally divers Bill statutory principle absence research about is not evidence about person For identified in this section principle merely administrative fairness it survival

Profound Autism Network

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

Argument

The Bill proceeds on an assumption that is not stated but is embedded in its structure:

That families will absorb most care for children with profound disability.
That caregivers’ role should be supplementary rather than sustaining support systems, which has limits shown through case studies ( Section3, Tabel2). The continuous responsibility involves caring without defined hours or breaks; it’s life-and-death work like first responders managing high-risk situations continuously (without rotation) – something society wouldn’t expect from professionals under such conditions.

Profound Autism Network

The 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.

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 primary providers of that support while legislating rules making funded relief harder obtainable without providing mechanisms identifying or responding when carer collapse becomes an emergency safeguarding issue. That model has already produced preventable deaths will produce more.

Recommendation: Committee should recommend insertion new Section D: Carers sustainability as statutory objective corresponding state obligation (full text set out Secton 10). This provision establishes carers’ sustainabilty core Act’s objects creates defined indicators triggering immediate safeguard obligations prohibits Agency from requiring care continuation unsafe clinical assessment confirms unsafety does not replace parental/carer responsibility gives statutor recognition principle State responsiblity correlative: where Scheme created sole mechanism meets profoundly disabled support family provides care otherwise States funding Obligation relieve unsustainable matter generosity own Acts Objects Australia’s rights under Articles Convention Persons Disabilities United Nations 2006).

CONSOLIDATED PROPOSED AMENDMENTS

The Committee recommends National Disability Insurance Scheme Amendment Securing NDIS Future Generations Bill amended insert following provisions into National Disability Insurancce Scheme Act Cth These amendments necessary ensure Bills legitimate sustainability objectives pursued manner compatible human Rights Conventions Person Disabilties UN 2006 International Covenant Civil Political Rights UN 1966 founding purpose scheme.

Amendment I Insert New Section B Human Rights Paramount Consideration

Insert after section three:

National Disability Insurance Scheme Amendment

Submission: [NDIS Amend Bill] - Securing Future Generations Act Submission No.: [Sub-Number]

Profound Autism Network

Human rights paramount consideration

(1) In exercising any power or performing any function under this Act, The CEO §Agency¨must: a. give primary consideration to Australia’s obligations under The Convention On Rights Of Persons With Disabilities with particular regard To Articles 3 ,5,9,10,14,15,19,23 And 28;and b. error no decision is made That would expose A Participant to foreseeable RiskOf serious harm Or death where such Risks could be mitigated By provision OF reasonableAnd necessary supports; c.in respect of Any participant who meets DSM criteria for Level Three Autistic Spectrum Disorder OR Who has minimalOr no functional communication treat best interests as Primary Consideration consistentWith Article Seven Of said convention and principle that rightsholders must not bear administrative evidentiary burden establishing their own entitlement life preserving Supports.

Insert New Section (Amendment Two) Proactive Safeguards For Underrepresented Cohorts Whole Person Impairment Assessment

Insert after section three B.:

Proactive safeguards for underrepresented cohorts whole person impairment assessment

(1). in Performing any Function or Exercising any Power under This act the CEO Agency Must proactively identify participants belonging under represented cohort purposes evidence hierarchy including a.First Nations Participants;b.culturally linguistically diverse participants;c.non verbal minimally speaking participants;d.participants intellectual disability ;e.high risk behaviors elopement water seeking self injurious behavior choking pica catatonia . (2).in making decisions under subsection thirty four NDIS Rules respecting identified participant The CEO Must apply whole person impairment evaluation total capacity support needs profile,communication environmental cultural factors rather than relying solely on diagnosis availability generalizable population level research.

National Disability Insurance Scheme Amendment

Profound Autism Network

(3) For the purposes of subsection (2), whole person impairment assessment means an evaluation: a. covers all impairments affecting participants, b. suggests interactions between these conditions impact functional ability more than single diagnoses do; c. is conducted or reviewed by specialists in relevant disabilities profiles; d. gives priority to direct clinical observations over standardized assessments when they are not validly administered.

(4) The absence of peer-reviewed research does not justify denying support under section one unless there’s no other evidence available for individualized care needs based on personal experience rather than general studies being applicable here.

(5) Any decision reducing supports must include justification why specific circumstances make standard medical conclusions insufficient and be subjectable through review at Administrative Review Tribunal level if challenged later.

National Disability Insurance Scheme Amendment

(b) medical or clinical advice that sustained caregiving without respite is contraindicated for carer’s physical or psychological health; (c) carer reporting they cannot safely continue providing care without immediate additional support; or(d) indicator in plan/records informal caregiving sole mechanism preventing serious harm. (3)(a) CEO assesses participant needs on basis informals can’t be assumed at current level, b(fund formal supports necessary maintain safety wellbeing) w/o reliance continued capacity;and(c) refer to appropriate psych-med-peer services.(4) Agency must not require caregiver provide continuing care clinically unsafe unsustainable likely result harmful effects. (5) Any decision reducing caps denying supports High-Risk Extreme-Risk classification Severe and Profound Risk Escalation Tool where carer collapse identified contributing risk factor include written statement explaining why reduction cap denial does create foreseeable risk of harm participant Statement subject merits review Administrative Review Tribunal.

Statutory Duty To Identify And Mitigate Risk Of Foreseeable Serious Harm Or Death

Insert after section 34:

Section 34A: Statutory duty identify mitigate risk foreseeably serious harm death (1) The CEO the Agency all decisions affecting access planning funding reviewing identify mitigating any foreseeable risks serious harm death participants.\r\t(2) For purposes subsection (1),Agency apply Severe Profound Disability Risk Escalation Tool successor instrument approved Minister following independent clinical review mandatory triage tool for profound disability equivalent high-risk profiles.\r\t(3) Where a participant assessed HIGH EXTREME CHANGE GOAL CRISIS TRANSITION under Tool, or red-flag behaviors including absconding water-seeking

National Disability Insurance Scheme Amendment

Submission 1693

Profound Autism Network

choking, pica or self-injury requiring medical intervention are recorded; if these incidents occur during an episode, the Agency must not reduce caps on funding without mandatory multidisciplinary clinical review. The risk assessment should document consideration regarding serious harm or death.

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations Bill 2026 Submission 1693

Profound Autism Network

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

meets DSM-5 or equivalent diagnostic criteria for Level 3 Autism Spectrum Disorder; or
has minimal or no functional communication; -or- have documented history elopement attraction to water without awareness drowning risk choking dysphagia self-injurious other high-risk behavior requires constant supervision maintain safety.

Amendment 7: Amend Effective Beneficial Test — Explicit Obligation Assess Risk from Under-Support In “effective beneficial” provision proposed new section 34(1) or equivalent insert paragraph: in determining whether is likely effective beneficial participants who meet DSM-5 criteria level autism spectrum disorder present with profound impairment minimal function speech high-risk behavioral profile CEO must give primary weight individualised capacity assessments conducted clinicians demonstrated expertise severe profoundly autistic evidence actual gains regression incidents current prior levels coronial child-protection NDIS Quality Safeguards Commission findings concerning children like circumstances not treat absence subgroup-stratified data general population meta-analysis determinative outweighing matters identified subparagraphs (i) through iii).

Amendment 8 Intensity Caps Independent Review Mandatory Risk Assessment amend intensity cap provisions sections 332EA equivalents insert Research may classified as ‘generalisable’ purposes legislative instrument subsection unless reviewed approved classification by independent research advisory council disability evidence practice established under section 118F.

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations Bill 2026 Submission 1693

Profound Autism Network

(3B) Before giving effect to any maximum intensity determination under subsections ‘„EA‟ or ‘EB‟ with respect to participants who meet criteria set out at section A(3A), CEO must prepare written assessment: (i). Risk harm if supports proposed; (ii). whether individualised evidence support higher level of support than max. determination would otherwise permit. Amendment: Functional Capacity Rules — Mandatory Considerations Level Autistic Spectrum Disorder, The category NDIS rules made under proposed section B(3): a. prescribe specific classifications thresholds profound neurodevelopmental disability including Level autism spectrum disorder; b.mandate assessors treat following as mandatory relevant considerations non-verbal minimally verbal communication profile absence danger awareness inability respond safety instructions documented absconding water-seeking climbing other high-risk behaviours requirement constant one-to-one supervision maintain safety and c.documented need regulated restrictive practices specialist behaviour support c.provide that clinical determination child meets DSM-5 Level Criteria practitioner expertise sufficient establish substantially reduced functional capacity across multiple domains without requiring further standardised testing where such cannot be validly administered The NDIS Rules legislative instrument defining all appropriate treatment purposes permanence test must expressly provide for autism spectrum disorder a.appropriate means interventions clinically indicated maximise functioning,communication,safety minimise having regard diagnosis severity clinical profile b.it does not require pursuit interventional are experimental contrary consensus presentation impose unreasonable burden participant family;c.permanent satisfied impairment lifelong recognised in 5 Clinical literature substantial reduces even after all appropriate received

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations Bill 2026 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-makingunder Schedule 3, Part 2,must expressly exclude from automated processing,and require mandatory specialist human reviewfor any decision concerning aparticipantor prospective participantwith adiagnosed orcclinically suspectedLevel 3Autism presentation ,ortherecparticipant’s records disclose absconding,waterv-seeking,self-injurious behaviourrequiring medical intervention, ora requirementfortwo-to-oneorcconstant supervision .

Amendment 13:NIDIS Qualityand Safeguards Commission—Enhanced Oversightof Participant Safety Insert after section 181 :

**181A Functionsin relationto participantsafety:**TheCommissionhasthe followingadditionalfunctions:(a)toauditAgency’scompliancewitheection( statutor ydutytoidentifyamitigate risk of foreseeable serious harmordeth); (b)toinvestigatesystemicfailures inriskidentificationandestalationfollowingany particantedeathoricriticalincident involvingaparticant with Level 3 Autismorequivalentprofound disability; and(c)torreportpublicly at least annually on the Agency’ s performance inprotectingparticipants assessed as HIGH RISKEXTREME RISKOR CHANGE OF GOAL / CRISIS TRANSITION underthSevereProfoundDisabilityRiskEscalationTool.

Amendment 14: Independent Research Advisory Councilon Disability EvidenceAnd PracticeInsertaftersectionE:

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 generalisibility and external validity of research relied upon by the Agency can access planning support determination decisions, d particular attention to cohorts systematically excluded from intervention trials); b(to identify gaps in the evidence base for participants with profound complex disability including non-verbal minimally speaking participants high-risk behavioural profiles first nations participants,& languistically diverse participants);c(provide binding advice to the CEO appropriate weighting published research clinical evidence lived experience evidence decision affecting underrepresented cohorts)d(commission oversee research into severe profoundly impairment needs longitudinal studies intensive outcomes level autism equivalent presentations) (e)(report publicly Parliament agency compliance evidenced-based practice principles requirement give primary weight individualisedclinical where generalisable does not represent participant’s circumstances).

(3)The must be constituted equal representation academic researchers demonstrated expertise disability neurodevelopment synthesis b(practising clinicians severity profound impairment behaviour support practitioners allied health professionals c people experienced disability family carers profounddisability specific representation minimally verbal non-speaking autistic people carers Level Autism or equivalent severely profound impairments First Nations disabilities family members First Nations participants culturally linguistically diversity participants carers)

(4)Councils’ interpretation application research evidence cases cohort is binding subject merits review Administrative Review Tribunal ground based material error fact law.

National Disability Insurance Scheme Amendment

(Submission 1693)

Profound Autism Network

The Council must publish an annual report detailing the Agency’s reliance on generalisable research for cohorts not represented in that research, identifying decisions where such research was applied beyond its validated scope. The Minister must establish a National Participant Death Review Process under legislative instrument: a. Mandatory reporting within 24 hours after death notification, b. Referral to relevant coroner if NDIS-funded supports are involved or withdrawn/reduced significantly c. Independent clinical review when participants have level-III autism/profound disabilities/high-risk profiles,d. Annual public reports summarizing aggregated results, recommendations from system reviews,Agency’s response.

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

Submission 1693

Profound Autism Network

documented inthe coronialrecord(Sectionsand4),inauthoritativeReviewTribunal proceedings,andinthexperienceoffamiliesnavigatingSchemearenotsolelytheproductofof statutorydrafting.Theyreflectanoperatingmodel,adecision-makingcultureandanworkforce capabilitythatarenotcurrentlyconfiguredtoidentifyassessorrespondadequatelytosafeguard risksfacingshiscohort. TheCommitteeshouldthereforeconsiderthesefollowingimplementationrecommendationsin additiontolegallegislativeamendmentsproposedinsection10.Theserecommendationsaredirected attheadministrativedimensionsofproblem.TheyrequireactionbyGovernmentAgency,notinonlybyparliament.However,theCommitteehasthestanding andreponsibilitytorecommendothemandiagindicatellegalscrutinytheir implementationwillcontinue.

Operational Recommendations

Recommendation: Independent Overhaul of NDIA Risk Triage Operating Model TheAgencyscurrentrisktriageframeworkdoesnotaffectivelyidentifiescalateorspond toparticipantswhosedisabilityprofilesplacethemataimedriskseriousharmondeathif supportsaresufficientordisrupted.Theapatternodeathsdocumentedintheauthoritativerecord andthepatterndecisionsdocumentedinAdministrativetrialproceedingsconsistentwith triagemodelorientedprimarilyfinancialsustainabilityratherthanparticipantsafety. Thecommitteesuggeststhatgovernmentcommissioninandependent operationalreviewNDIAs riskidentificationtriagetrialsystemswithinafter90days Billscmmentarythat reviewshouldbeconductedpersonsexpertcomplex insurancerisemodellingclinicalgovernancehigh-risk disabilityservicesandcoronialchild protectionpractice.Itspecificallyaddress:

thecriteriaparticipantLevel3Autismequivalent high-risksprofilesincludedescalatedwithinoperational systems;
adequacyprocessesassessingdokumentingharmunder support; and treatingclinicianfamilyevidencereceivedweighted in decisions.

National Disability Insurance Scheme Amendment

Submission 1693

Profound Autism Network

The outcomes of that review should be publicly reported and should be accompanied by a timetabled implementation plan. It is important to note: The review is intended as complement rather than substitute for legislative amendments proposed under Section 10;

Recommendation 2: National NDIS Participant Death Review Committee

There exists no current mechanism systematically reviewing death cases among NDIS participants nor identifying extent inadequate/disrupted supports contributed towards those fatalities; coronial processes valuable but episodic/resource-constrained/non-systematic across scheme scope.

Features recommended within committee establishment include:

Independent statutory standing with membership drawn from clinical/coronial disability advocacy/First Nations/family lived-experience backgrounds including substantial representation families whose members have died, Functions: Committee reviews all deaths where adequacy funded support remains live question identifies systemic patterns makes recommendations agency minister parliament operational reform legislatively. Public Reporting: Annual public reporting findings would give practical effect positive obligation Article 10 Convention Rights Persons Disabilities (United Nations, 2006) take reasonable steps protect life provide Parliament community evidence base currently does not exist assessing whether the Scheme meeting most fundamental obligations its vulnerable participants.

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

Agency publishes systematic data participant deaths critical incidents involving NDIS participants without such information it impossible assess policies funding decisions contributing preventable harm hold Agency publicly accountable outcomes 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, together with an assessment on adequacy;
critical incidents involving NDIS participants similarly reported; and actions taken. The obligation would not impose unreasonable administrative burden since data already exists within agency records but disclosure remains challenging.

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.

Administrative Efficiency and Governance### 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.

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

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.

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 conditions where undisclosed internal criteria can operate without public accountability. The Committee should recommend insertion of new section 118C requiring the CEO to publish all internal case management guidelines, evidence hierarchies, risk assessment tools, clinical decision support tools, and escalation frameworks within 30 days after creation or update; these must be published alongside any successor document related to Escalation and Prioritisation Matrixes under this section’s commencement date.

Independent Operational Readiness Assessment

Before commencing provisions regarding an Evidence Hierarchy and Intensity Caps for Level-III Autistic individuals (and equivalent profound disability profiles), it is imperative that Minister commissions independent operational readiness assessments conducted by experts familiarizing themselves thoroughly about complex insurance scheme administration & disability services. These evaluations need addressing workforce capability, risk management systems, governance structures, as well as infrastructure required safely implementing those provisions on behalf such participants’ needs;

The Committee recommends inserting a new Section 118D mandating this evaluation process before proceeding with implementation of aforementioned provisions until confirmed matters identified in said assessment have been addressed via ministerial response or alternative explanation justifying continuation despite findings.

National Disability Insurance Scheme Amendment

Submission: [NDIS Act] - Securing Future Generations Bill Submission No.: 2026-1693

Profound Autism Network

Before commencement of substantive provisions:

Minister must commission independent auditor appointed by Auditor-General.
Conduct comprehensive audit across agencies including cost-effectiveness & proactive publication requirements within Freedom Information processes; identify duplication opportunities; tabulate report publicly after Royal Assent within 90 days publish ministerial response identifying recommendations implemented, schedule implementation timeline.

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

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 Profund 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### ProblemAustralia has no national alert system equivalent to the AMBER Alert frameworkthat isspecifically designedforor consistently appliedtotheelopmentofchildren andaadultswithseveremand profound autism.TheAMBERAlertsystem,anditsAustralianequivalents includingth eChildRescue Alert andrevarious State-basedmissing child protocolsareprimarilydesigned forchildabduction scenarios.Theydonotreflectthedistin tprofileo fanon-verbalautisticchilwhohaslefta supervisedenvironmentwithout awareness ofdanger,isattracted towater,roads ,orrailcorridorsandcannot respondtov erba lcommunicationfromfirst respondersormembersoft hepublic. The coronial record documents this failure repeatedly.Children have drowned incircumstances where th proximityowf waterwas knownwhere childswaterseekingbehaviour wasdocumentedandrewheresearchresponse didnotprioritisewaterwayssufficient urgency.That is nota resourcefailure.Itis a protocol failur,e nd itisonecanbe corrected.Proposed Measures Th Committee should recommendtha Commonwealth, in cooperation withState andTerritory governmentsimplement anational elo p mentalert systems equiva lentreac h and immediacytothe AM BER Alertframeworkspecifically desig nedforth el opm ent ofindividual swith severeanda d profund auti smande quivalentprofounddisabilityprofilesThe systemshould:

National Disability Insurance Scheme Amendment

Submission: Profound Autism Network

The following recommendations are made regarding missing persons responses involving individuals with an autism profile:

Recommendation A - Activation & Broadcast

(a) An activation can occur when confirmed/suspected elopements happen. (b) Immediate broadcast is necessary across relevant geographic areas including police agencies, electronic services, public notifications about individual details (disability profiles), risk behaviors known, specific environmental hazards prioritized during search operations; (c) For non-verbal autistics documented as water-seeking behavior alerts must include immediate checks on accessible bodies of water near their likely travel radius; (d) Integration into voluntary registration systems proposed for automatic population upon activation.

Recommendation B - First Response Actions

All State/Territory Police Services/EMS should embed these actions within standard operating procedures if responding to missing person cases where there’s significant risk due to autism severity or profundity:

Action Items:

(15 minutes response time): Check all nearby access points like rivers/channels/pools/water features immediately after notification received from parent/carer/support worker/law enforcement officer.
Deployment: Train officers in communication and approach techniques specifically tailored towards autistic individuals before contacting them directly at the scene location found.
Communication: Regular updates provided by family/carers throughout entire search process until locating subject.
Post Incident Reporting & Review Process: Submit a detailed report post incident detailing findings submitted both NDIS Quality Safeguards Commission triggering mandatory triage review described under C1(a).

Recommendation C: Training Mandate

The Commonwealth is advised to fund and implement training programs focusing exclusively around handling elopement incidents involving severe/profoundly affected children with autism profiles, ensuring completion 6 months following implementation date. This program must be developed collaboratively between families of past victims, specialists dealing particularly with this condition (clinicians), as well as self advocates who have expertise regarding sensory processing.

Submission 1693

Profound Autism Network - Airlie Alert Proposal for National Elopement Alert System Naming

National Disability Insurance Scheme Amendment

(d) the NDIS 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.

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 does not meet their needs due to frequent unavailability or under-resourcing; it fails to offer sufficient psychological support, peer connection, crisis respite for this group’s specific requirements; The Committee should recommend urgent review: (a) whether provides adequate crisis respite & psychosocial support for burnout, compassion fatigue, clinical mental health deterioration; (b) referral pathways between Carer Gateway - NDIS are inadequate ensuring immediate triage when distress occurs; (c) resource allocation ensures peer programs specifically catered towards families facing similar challenges within six months accompanied by funded implementation plan addressing identified gaps.

Recommendations for Referral: Independent Public Inquiry into Agency Decision-Making Practices and Participant Deaths

The submission documents consistent evidence across multiple sections regarding agency decision-making practices including automated processes actuarial models internal guidance template-based assessments centrally directed decisions affecting participant outcomes.

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

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. The Committee should recommend that the Government establish a Royal Commission,or an equivalent independent public inquiry with full coercive powers,to examinethe following matters: First:\tWhether\tagency’s useof automated ,algorithmic template-based,and actuarially directed decision making practices has contributedtoparticipantdeaths.serious harm,familybreak down,homlessness.hospitalisation.institutionalisation.orpreventabledeteriorationin then healthorewellbeingo fNDISparticipants. Second: Whether \a agency’s internal guidance documents.risk triage tools assessmentframeworks.debt recoverypractices.fraudidentificationprocesses.and supportreductionorreassessmentmethodologieshaveoperated inamannerconsistentwit hth eagency’ sstatutorydutiesand wit ha ustralia ’so blig ations under th ec onventionon ther ight sof Persons w ithDisabilities(United Nations .2006). Third :Whethe rpartici pants died o rw ere placedatserious risk aftersupports werer emoved.reduced.delayed.o redirected to alternative service systemsthat were not capable of meeting theirneeds,and whethertha ncy had orshould hav ed knowledge oft he ris kthose decisions created.

Profound Autism Network

Fourth: Whether the Agency’s decision-making culture, institutional priorities, current performance indicators , and workforce training is adequately alignedwith participant safety and with therights-based purposeofthescheme. Fifth: What legislative regulatory,and operational reformsarerequiredto prevent recurrenceofofharmsidentified; to ensurethatthetheSchemeoperatesinamannerconsistent witheits foundingpurpose;an dwit hAustralia’shuman rightsobligations .

ScopeandsafeguardsThe inquiry should have power compel production documents examine witnesses make findings matters systemic concern Itshouldnotbe limited examining decisions made about individual participants but empowered exami nethedesign administration scheme ’sdecision making systems whole The inqu i sht o uld include terms reference specific direction cases participants Level3Autism equivalent profound disability profiles having regard external validity gap research base relied upon agency adequacyAgency risk triage framework for this cohort relationship between funding decisions deaths documented coronial record (Sections) such an inquiry would not be act condemnation ofagency staff itwould recognition that a scheme scale consequence must accountable public toparticipants Parliament outcomes produces appropriate response situation existing accountability mechanisms demonstrably insufficient 11.52 Recommendation B2 Alternative Access Pathways People Disability Who Do Not Require Intensive Lifelong Supports Observation Committee may wish note comprehensive durableresponse NDIS sustainability development adequate alternative pathways through Medicare private health insurance employer linkeddisabilityhealth streams people with disability do require intensive lifelong funded supports kind Scheme designed provide Suchpathwayswould reduc epressure on thescheme while ensuringpeoplewith dis ability are left without any support until their needs become severe crisis driven life-

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

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. The submission does not develop these proposals in detail as they fall outside provisions designated within the Bill’s framework; however it notes any alternative pathway must recognize diversion appropriateness where systems genuinely meet participants’ needs—no current system meets Level-III autism criteria argued at length herein.The integrity depends on maintaining distinction between tiers throughout design administration. Referral: The committee may wish refer matters Productivity Commission Department Health Aged Care Social Services coordinated development broader reform agenda which forms part bill.

Recommendation B3: Disability Risk-Pooling Insuranc Coverage Tax Policy

Observation:

This acknowledgment without developing details broad structural question regarding Australian economy’s risk-pooling structure.NDIS absorbs disproportionate share cost arising illness accident workplace injury circumstances absent or inadequate total permanent insurance coverage contributing scheme pressure conditions under crisis stage earlier treatable stages. Question mandatory minimum insurance superannuation-linked cover tax concessions reducing that pressure improving outcomes people acquiring disabilities during working lives legitimate important policy issue engaging superannuation law regulation taxation jurisdiction Committee scope this bill.

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 directed at administrative standard.

CONCLUSION

The National Disability Insurance Scheme Amendment ( Securing for Future Generations) (Bill presents Parliament with both legislative moral choice. NDIS Generations) is established principle people significant permanent disability entitled supports they need live dignity safety full participation communities not qualified generalisable population-level research ministerially determined intensity thresholds institutional priorities agency administering Scheme it based commitment grounded Australia’s obligations under Convention Rights Persons Disabilities United Nations recognition equal worth every person with disability. as currently drafted does honour participants Level autism equivalent profound disability statutory evidence hierarchy privileges research systematically excludes cohort its intensity-capping framework carries no corresponding obligation assess document risk harm from under-support functional capacity provisions permanence test other service systems criteria amendments proposed will operate structural barriers access most urgently require Scheme protection consequences design deficiencies theoretical documented coronial record Sections Administrative Review Tribunal Federal Court proceedings Section lived experience families children harmed predictable consequence inadequate support coronial spanning more decade consistently identifies same preventable failures absent environmental safeguards adequate supervision ratios communication breakdowns agencies absence of specific clinical protocols death Airlie Montgomery March 2056 year old non-verbal autistic girl wandered family home North Nowra died after falling cliff recent documented case pattern continues NDIS was prevented precisely these outcomes Bill entrenches conditions producing

National Disability Insurance Scheme Amendment

Submission 1693

Profound Autism Network

The scheme does not secure it; instead, it places present generations at continued foreseeable risks. It may produce unjust unsafe outcomes through design institutional inertia inadequate attention to people affected circumstances remedy condemnation amendment legislative administrative reforms proposed here do not undermine Bill’s legitimate sustainability objectives they pursue those objectives compatible Australia Human Rights Obligations founding purpose Scheme.

Priority Amendments

Committee recommended all amendments outlined section ten particularly committee treated following four as matters first priority:

Amendment Evidence hierarchy carve-out for severe profound impairment sections(4)–(6)
Minimum safety-threshold protection safeguarding assessment sections A B
Prohibition automated decision-making participants profoundly disabled section(AA)
Human rights paramount consideration section(4)(4)) The Committee recommends these address most direct immediate structural risks to participant’s safety cohort decisions affecting grounded best available evidence specific presentation harm from under-support assessed documented before support reduced capped high-stakes qualified human decision-makers access clinical advice statutory objects interpreted consistent with Australia’s Human Rights obligations.

Implementation and Accountability

Committee further recommend implementation cross-jurisdictional measures set out Section eleven including: Independent overhaul of the NDIA risk triage operating model (Recommendation).

Profound Autism Network

National NDIS Participant Death Review Committee (Recommendation 2)
Mandatory annual public reporting on participant deaths and critical incidents ( Recommendation C1(b))
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 whether participants most complex profound needs are safe supported treated rights holders rather than cost categories amendments proposed directed at standard The NDIS established ensure Australians permanent significant disability could live dignity safety families confidence adequate support available children Level Autistic promise not yet kept This provides Parliament direct opportunity keep it In memory Airlie Montgomery Kumanjayi Little Baby every child adult with profound whose death was preventable committee respectfully urged take that opportunity systemically failing Submitted to community affairs legislation inquiry into national disability insurance scheme amendment Securing future generations bill Date Submission :June

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026 Submission 1693

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders(5th ed.). href=“https://doi.org/10.1176/appi.books.9780890425596"\)
Australian Broadcasting Corporation.(2006, december=December 31 ). Autistic boy found dead river.ABC News.href=“https://www.abc.net.au/news/2006-12-31'autistic-boy-found-dead-in-river/2163378” AustralianBroadcastingCorporation . (October, October = october 26). Carers took beach trips to tire out clients ABC News href=“https://www.abc.net.au/news/2010-10-26/carers-took-beach-trips-to-tire-out-clients/2312336” AustralianBroadcastingCorporation . June ,June = june 24). Family gets apology over death disabled sonABCNewshref=“https://www.abc.net.au/news/2013-06-24/family-getsa-pology-over-death-of-disabledson/4775626” AustralianBroadcastingCorporation . December, december = decembe r10). Body missing toddler Sam Trott found lake family pays tribute affectionate loving childAB C News. href=“https://www.abc.net.au/news/2014-12-10/sam-trotsearch-for-missing-perthtoddler-called-off-bodyfound/5957408"\)
Australian Broadcasting Corporation.(june=J une, december=decemb er) When carers kill.ABC News.href=“https://www.abc.net.au/news/2018-06-23'when-carers-kill/9894514”)
at Au stralian Broad casting Cor pora tion.July(J uly),July = July ) Perth mother Karen Hall still unpacking her grief after drowning sixyearold son Joey ABC News href=“https://www.abc.net.au/news/ 2024 -o7-18/karen-hall-rebuilds-life-after-autistic-s on-j oey-vinesdeath /lO4 O4 a e6 l2 “ )
at A ustrali an Bro adcastingCorporation . September,September = sep tember 20). Father found guilty nonverbal autistic daughters manslaughter afte r drown ing deathABCNewshref=“ https: // www abc net au news//2024-o9-20/townsville toddlermanslaughter sentence/lo43S7852“ AustralianBroadcastingCorporation.Novem ber ,November=n ov em be r)(December=De c ember) Grieving father whose son drowned display home pool says his death was preventable.ABC News.href=“https:/\www.abc.net.au/news/2025-ni-12/gurshabad singh-kialla-display-home-pool-death-talwinder Singh/lOlSS976I2”)

— Page | Page 72

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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-suit-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 Newshttps://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 coronial.com.au .Systematic review of Autism-related coronial findings across Coroners Court New South Wales Findings Castillo Milne and Milne https://coroners.nsw.gov.au/documents/findings/2016/Findings%20Castillo,%20Milne%20and%20Milne.pdf Coroner Court NSW Inquest into the deaths Maria Claudia Lutz Elisa Manrique Martin Manrique Finding https://coroners.nsw.gov.au/documents/findings/2019/Lutz%20Manrique%20Finding%20v2.pdfCoroner Court NSW. Inquest death Alex Raichman[finding]. https://coroners.nsw.gov.au/documents/findings/2022/lnqest_into_the_death_of_Alex_Raihnan.pdfCoroner Court NSW. 2022.Inquest into Riley Christopher Shortland finding.https://coroners.nsw.gov.au/documents/findings/2022/inquest_into_the_deat_of_riley_christopher_shortlan.pdfCoroner Court Victoria.Finding into death without inquest Christian Jay Sherwood Peck https://www.coronerscourt.vic.gov.au/sites/default/files/2018-12/christianjaysherwoodpeck_517509.pdf corner court of victoria (2013). Findin to death without inquest Felix Hua .https://www.coronerscourt.vic.gov.au/sites/default/files/2018-12/felixhua_274209.pdf

— Page text start —Submission 1693Profound Autism NetworkAustralian Broadcasting Corporation.(2026, March 4). Mosman Park murder-suicide: Clune family friend speaks. ABC News.http[s]://www.abc.net.au/news/ 2026- 03 -04/mosman-park-murder-suit-clune-family-friend-speaks/ 106411866 Australian Broadcasting Corporation(2026, March r 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-parksmission /]106437708 Bendigo Advertiser.r (2012 , February )Bailey s family says thanks [https: // www.bendigoadvertiser.com .au/story/ ]73789/baileysfamily-thanks coronial com au ( )Systematic review of NDIS-related coronial findings across Coroners Court New South Wales Findings Castillo Milne andMilne https ://coroners nsw gov au/documents/findings/Coroner Court NSW Inquest into the deaths Maria Claudia Lutz Elisa Manrique MartinManrique Finding https: /coroners.nsw.gov.au/documentfindings/2019/Lutz%20Manrique%20Finding%20v2.pdf Coroner Court NSW. Inquest death Alex Raichman[finding]. https:/ /coroners ns w go v a documents find igs/2022/inqest_into_the_death_of_Alex_Raihnan pdf Coroner Court NS W .Inquest into Riley Christopher Shortland finding.https:// corner ns g av o u docu ments fin d i ng s/2022/in quest into th e_de at_o f_r ile y_ch ristopher_shortlan.pdf Corner court Victoria.Finding into death without inquest Christian Jay Sherwood Peck [https: //www.coronerscourt.vic. gov .au/sites/default/files/ ]2018- -12/christianjaysher woodpeck517509pdf Corner court of victoria ( )Findin to deat h with out quest Felix Hua .[https :// www cor on erscour t vic gov au/sit es/de fault/fi les/] 2018- 12/felixhua_ — Page text end —

National Disability Insurance Scheme Amendment

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Profound Autism Network

Coroners Court of Victoria. (2023). Finding into death without inquest: Aluel Ajak [Form 38]. href=“https://www.coronerscourt.vic.gov.au/sites/default/files/COR%202023%20003665%20Form% 2038%-20-%20Finding%20into%20Death%20without%20Inquest_Signed.pdf” rel=“nofollow”> https:// toernerscourt.vic.gov.au/sites/default/files/COR%202023%20003665%20Form 2038%-20-Finding%20into%20Death%20without%20Inquest_Signed.pdf Coroners Court of Victoria. (2024). Finding into death following inquest: Harley James Smith [Form 37]. href=“https://www.coronerscourt.vic.gov.au/sites/default/files/COR%202024%20002111%20Form% 2037-Finding%20into%20Death%20Following%20Inquest_Published.pdf” rel=“nofollow”> <ahref=https://coronerscourt.vic.gov.au/sites/default/files/COR%202024%20002111%20Form% 2037-Finding%20into%20Death%20Following%20Inquest_Published.pdf>href=htto://coronerscourt.vic.gov.au/sites/default/files/COR%2 02024%20002111%20Form% 2037-Finding%20into%20Death%20Following%20Inquest Published.pdf

Daily Telegraph. (October, ⁥9). Coroner criticises failures. to=“https:// dailytelegraph.com.au/news/nsw/coroner-criticises-failures/news- cstory/282d74fe02340bcc56530cbb8ebfb72f” rel=“nofollow”> <ahref=http:www.dailyteleg raph.com.au/news/nsw/coroner-criticises-failures/news-story/282 d74 fe02340 bcc56530 cbb8 ebfb72 f >http://dailyt elegraph .com.a u /news \ns w /co rone rc rit ic is es -fa il ur s/ne ws-st ory/28 rd74 fd0e a340 bcce 56530 cbbe bfbd72 f Disability Memorial.(n.d.). Shellay Ward.
<a href=

National Disability Insurance Scheme Amendment

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Profound Autism Network

News.com.au. • Wandering toddler Christian Peck’s death prompts bracelet probe. href=“https://www.news.com.au/national/wandering-toddler-christian-pecks-death-prompts-bracelet-probe/news-story/e0d0fe144c6688ac24821fb794fd3a1c” title=

National Disability Insurance Scheme Amendment

Submission: [NDIS for Future Generations] Bill 2026 Submission No.: [1693]

Profound Autism Network

Journal. Autism & Developmental Disorders, Vol., Issue, Pages. https://doi.org/[Link] Spencer et al.(2012) Evidence-based practice: A framework for making effective decisions Education Treatment Children, Volume(Year), Page Range. https://researchgate.net/publication/ Supreme Court Western Australia District Court Trott v Rajoo WADC 144. hp://decisions.courts.wa.gov.au/judgments/view_judgments.aspx?judge_id=58&year=2020 Tager-Flusberg Kasari (2013). Minimally verbal school-aged children with autism spectrum disorder The neglected end of the spectrum Autistic Research, Volume(Year), Page range. https://doi.org/autisminformation.com/auresearcher.html The Age March 31 Boy had roamed before tragedy. https://www.theage.com.au/national/victoria/boy-had-roamed-before-tragedy-20110331- cngk.html The Age February Cameraman rescues lost autistic boy. https://www.theage.com.au/national/victoria/cameraman-rescues-lost-autistic-boy- tyyz.html United Nations Convention on rights persons disabilities. [Link] International covenant civil and political rights [Link]

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 reflecta framework designed for general institutionalrisk management rather than forthe specific,documented,and high-stakes safeguarding profileofparticipantswith Level 3Autism , profund adaptive impairment,minimalor absent functionalcommunicationandhigh-riskbehavioural presentations . The Committee should note these followingspecificdeficiencies:

Institutional self-protectionis weighted alongside participant safety.Five oftenten risk categories inthecurrentmatrixaddress protectionAgency reputation mediaprofile ministerial confidence relationships government stakeholders.Participant safetyspecified as risk harm health wellbeing personappears one category among ten without primacy.In scheme established advance rights safety people disabilityordering priorities not defensible.The matrix contains no clinical triggers that kill childrenLevel Autism.There existingframework reference elopement absconding behaviour water-seeking behaviour choking dysphagia or picaself-injurious behaviourequiring medical intervention carer mentalhealth deterioration burnout cumulativeharmto participantscarers loss informal care capacity systemic failure across multiple service systems.These factors coronial findings decade repeatedly identified contributing preventable deaths autisticchildren adults Australia The matrix generic non-clinical blunt bureaucratic instrumentdesignedgeneral administrative riskmanagement.does distinguish betweendisability types communication profiles severity levels behavioural riskprofiles.Applied toparticipant with level 3 autism,elopment history,nosafety awareness and carerburnoutit willnot reliably generate escalation response circumstances require. There isno mandatoryescalation pathway even at highestrisk level.Even where a paticipant classified presenting Extreme riskeverywhere theexistingmatrix does not trigger automatic provision twenty-four-hourone-to-onesupervision emergency crisis placementormandatory

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

Submission 1693

Profound Autism Network

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 numberofdeathsautisticparticipantsthathave sincebeenthe subjectcoronialor media scrutiny.Thereisnoevidencelessonsfromthose proceedings havebeencorporatedintothetoolorthetheoperatingmodelit supports`

The SevereandProfoundImpairmentRiskEscalationTool`The following toolhasdevelopedspecificallyfor participantswithLevel autism spectrumdisorderandothersevereprofund impairment presentations.It clinicallygrounded cohortspecific,andcalibratedtothesafeguarding realities of profoundimpairment.Importantly,dosest classifyparticipantas highriskmerelybyvirtue diagnosis.Itrequires specific, observable ,andedocumented riskeffectsto be present.This ensures escalation isproportionate,evidenced-based,defensible`

Submission 1693

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

Submission 1693

Profound Autism Network

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.

Submission 1693

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

Submission 1693

A systematic review of coronal 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, an d coroner recommendations relevant to disability services, clinical practice, and policy.

Total search results	Australian jurisdictions	Thematic categories	Year range covered
10	Australian jurisdiction	Thematic category	Year

Report generated: May 20th , year 2026 | Source: coronial . com au(State & Territory Coronial Services) Disclaimer :This report is compiled for research purposes Clinical education Material outside scope request removed as irrelevant rather than exempt. Disclosure could damage national security defence or international relations. Documents that would reveal Cabinet deliberation decisions. Law enforcement public safety prejudice law Enforcement fair trial Public Safety disclosure prohibited by another Commonwealth law Legal professional privilege document privileged from production legal proceedings material obtained confidence action breach confidentiality contempt Parliament court infringement privileges between Commonwealth States Deliberative process revelation opinion advice recommendation contrary interest substantial adverse effect on agencies operations tests audits management unreasonably affect lawful business commercial financial affairs unreasonable disclose personal information about person Research have substantial adverse effect Australia’s economy.

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

AUTISM-RELATED CORONIAL FINDINGS – AUSTRALIA Submission 1693 coronial.com.au — Generated on May ([2][[0]][/[)])([2])([[6]])

Submission 1693 coronial.com.au | Generated on May 20,

National Disability Insurance Scheme Amendment

coronial.com.au “ Generated on May

Submission 1693

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026 AUTISM-RELATED CORONIAL FINDINGS - AUSTRALIA Submission 1693 coronial.com.au |€ Generated on €May€,\xAD \u20AC20,€26

Complete Search Results – Reference Table

The following table lists all results returned (total of 104) from a search conducted at coronial.com.au using ‘autism’ as keyword. The list includes cases where any mention to autism was found in findings regardless if deceased had been autistic or not. Cases are listed according their order within result pages (pages).

#	Name / Identifier	Yr.	Jur.	Age/Sex	Cause Of Death
1	Kyle Horne	2019	VIC	*

| # & Name / Identifier & Yr & Jur.& Age/Sex& Cause of Death | — & — & — & — & — & — | | 33 & Darren Hannah & 2014 & VIC & 41M* & Airway obstruction – pica (dirt) | | 34 & Andrew Kursinskis & 2025 & VIC & 57M*& Complications of food aspiration | | JH (suppressed) & 2023 & VIC & 15M* & Electrocution | | Child L (suppressed) & 2019 & WA & 13M* & Epileptic seizure/SUDEP | | Rodney Griffin & 2016 & VIC & 64M* & Small bowel obstruction | | Stuart Lambert & 2013 & QLD & 31M & Chest injuries (autism/epilepsy) | | Unnamed (59M) & 2023 & VIC & 59M & Aspiration pneumonia + NSTEMI | | Gillian Burgess & 2023 & VIC & 63F& Undetermined; COVID-19 | | TCW (suppressed) & ‘2022’ & VIC & *

| # & Name / Identifier & Yr & Jur.& Age/Sex& Cause of Death | — & — & — & — & — & — | 70 Richard Paul Atkins & 2025 & VIC & 65 M & Ischaemic heart disease |

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,andtheNDISQualityandSafeguardCommission.

Disability Service Providers:

Implementformalmealtimesupportplansforallclientswithdocumenteddysphagia,chokingriskorpicabehaviour,reviewedannuallyandcommunicatedtoallserviceenvironments(residential/dayprograms/transport).
Establishrobustinter-agencycommunicationprotocolsenablinghealth,risk,&behavioursupportinformationtobesharedinrealtimewebetweenresidentialproviders/dayprogramsandrespiteservices.
Conductenvironment-specificrisksassessmentsforelopment/wateraccess&dangerousmaterialsforalloutisticclientswithrelevantrighthistories.
Mandateone-to-onesupervisionforbath/showeractivitiesforeachientewithseizuredisorderorelopmentrisk.
ImplementInternationalDysphagiadietStandardisationInitiative(IDDSI)frameworksector-wide,replaceingambiguousfoodtexturedescriptors.
Developregularlyupdateindividualseizuremanagementplansforeachientswithepilepsy,inconsultationwithneurologists.

Clinical Practice — Emergency Medicine and Primary Care:

Devolveautismspecificclinicalassessmenttoolsetheregencypresentationsaccountingforthecommunicationdifferencestypicalpainpresentationalexithymia. 2.ProvidemandatoryASD-awarenesstrainingformeergencyphysicians,nurses,andparamedics,focusingontheriskofunderdiagnosisacuteconditionsinnon-verbalorlimitedverbaouticpatients. 3.Implementstandardisedcommunicationsupports(e.g.,AACdevicesvisualsupportsCarerasinformantprotocols)eemergencydepartmentsettings. 4.Ensureautismdiagnosiscandcommunicationprofileflaggedprominentlypatientrecordsaccessibleacrosshealthservices.

Mental Health Services:

DevelopimplementASD-adaptedsuiceriskassessments,accountingelevatedsuiceriskatypicalpresentsessionalsidicationinautisticindividuais. Ensureformalcarecoordination&transfer-of-careplanswhenautisticyoungpeopletransitionbetweenmental health services (e.g.CYMHS to adult services or private providers). Remove ligature points from all mental health inpatient units accommodating autistic patients. TrainHeadspaceandyouthmentaltharesservicesinASD-specificcrisis presentations & intervention approaches

NDIS and Government Policy:

StrengthenNDISQualitySafeguardsCommissionoversightgroup home documentation incident reporting staff competencies with particular attentionto choking/aspiration elopement deaths.

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations Bill 2026

coronial.com.au “ Generated on Mon Jun 27 at 8pm UTC+10 (AEST)

Develop a set of basic practice rules within the NDIS framework regarding healthcare administration. This includes seizure plans, mealtime schedules, evasion risk prevention strategies;
Offer enhanced transition support tailored to young adults diagnosed as Autistic aged eighteen years old who are transitioning from Child Protection System into accommodation funded through the NDIS program; this is aimed towards bridging any gaps that may exist with regards continuity of care;
Invest resources toward providing supported living accommodations specifically designed cater those individuals suffering complex behavioral issues or mental illnesses among other conditions which could lead them homeless or unstable housing situations thereby reducing their chances thereof;
Fund mandatory ASD-specific training programs across all disability service providers registered under the NDIS scheme in order ensure they have adequate knowledge and skills necessary when dealing directly interacting with autistic clients;

Child Protection & Out-of-home Care

Ensure current, accessible hand-held health records accompany every child placed outside home environment ensuring seamless access regardless where such children might be located. This will help maintain consistency between different services involved while also improving overall quality standards for these kids’ well-being during placement periods out side traditional family setting: Mandate dedicated case managers responsible solely focusing on managing cases involving special needs autism spectrum disorder patients requiring additional attention due complexity associated therewith; implement minimum standard guidelines set forth by NDIS concerning first aid education within residential facilities accommodating disabled persons including but not limited too people having disabilities like Autism Spectrum Disorder (ASD); strengthen interdepartmental collaboration amongst various departments handling matters related to safety, education wellbeing health etc. orange wide range of concerns surrounding Autistic Children currently residing away from parental homes;

Data Sources

Coronal.com.au - Autism search results Primary search database – 104 results; all pages extracted.

NSW Coroners Court Finding Cameron De Vries Full PDF Finding—drowning NDIS group home. * [Northern Territory Local Court]Inquest Damon Cabiddu Full PDF Inquest finding — ruptured appendix; * [QLD Courts]Finding C (girl) Full PDF non-Inquest Findings — choking on food bolus.; * [W.A. Coroner’s Office]Finding Child L - SUDEP with aspiration

[NSW Coroners Court]Finding Riley Shortland- M1 Motorway elopement death;

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 coronal findings Where full Finding text was not available online, Information based page metadata description fields and supplementary news/government sources as noted in each Case Source: coronial com au | May 2026 Page 21

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

Submission 1693

Australia – All Jurisdictions, 2014—2026 A comprehensive analysis of coronial findings involving NDIS participants and the disability support sector across Australian jurisdictions, compiled from coronal.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. | Total search results | Australian jurisdictions | VIC cases (§89%of total)| Year range covered | |-|-|-| | Totalsearchresults | Australianjurisdictions* | VICcases (µ89% oftotal) | Yearrangecovered** Report generated: May 20th , 2026 | Source:*coronal.com.au(State & Territory Coronial Services) Disclaimer:*Thisreport iscompiledforresearchandeducationpurposes.Individualcasedetailsaresourcedfrompubliclyavailable coronaifindings.Casesinvolvingsuppressedidentitiesarerelatedtobyinitialsorcourt-approveddesignatorsonly.*Thisthereportdoesnot constitutelegaladvice.

National Disability Insurance Scheme Amendment

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 coronal database.

The search returned 230 results across eight Australian jurisdictions covering findings published between 2014 and to 2026. The NDIS was progressively rolled out from ’“2013,” so earliest findings reflect cases during transition period. Searches capture where deceased were an NDIS participant or involved in person’s care; funding decisions scrutinized; or reference NDSS Quality Safeguards Commission. Not every result reflects NDIS failures contributing death—many involve natural progression among participants receiving appropriate care. Report focuses systemic failure/preventability/policy implications identified.

Jurisdiction Distribution — All Results (N=230)

|Jurisdiction| Findings (%)| |-|–:–:-| |Victoria| 88% | Robust documentation, large disability sector | |[Northern Territory] NT) |||| Includes Aboriginal participants; remote service gaps. | ]|[Queensland(QLD)]|||Includes significant choking/aspiration child cases.|[Western Australia(WA)|||| Notable funding denial cases.] [New South Wales(NSW)][Mental health community cases]|[Tasmania(TAS)[Epilepsy/SUDEP aspiration cases]]ACTUnascertained respiratory casesSouth Australia(SA[Mental Health supported living]][/table]

Victoria’s dominance (▤8%) reflects proactive coronial doc and largest market by numbers.*

Participant Profile — All Cases(N=230)

|Characteristic| Detail| |-|=:== SexMale ~~120(52%), Female~~97(46%). Mixed/Not stated: 1 Age range7 years – “” to 93 years predominantly adults age group of 40–70. Most common disabilitiesDown syndrome Trisomy cerebral palsy intellectual multiple sclerosis epilepsy Lennox Gastaut acquired brain injury Huntington’s Parkinson disease autism spectrum disorder motor neurone spinal cord injuries Common settingsHospital (128), Home SDA SIL Other Community Aged care Mental health facility CausesAspiration pneumonia most frequent complications neurological progressive sepsis, choking cardiovascular suicide/self-harm assault drowning*

Submission 1693 coronial.com.au Generated on 20th of May in year 2026

Thematic Categories

Cases across all results fall into eight principal thematic categories reflecting recurring vulnerabilities within supported-care systems and policy.

Category Key Issues Exemplar Cases

Aspiration/Choking/Dysphagia Dysphagia management failures; inter-agency communication issues; mealtime plan inadequacies; IDDSI non-compliance Bridie Gilligan, Mark Capovilla Roger Batchelor, Andrew Martin, Jimmy Delcus
Suicide/Self-Harm Mental health comorbidities; adequate crisis support denial; inadequate funding leading to delayed care; ligature risks present BQ, Didbala Anzac, Glen McKinley, Peter Bolton, Claire Carroll PLM Andrea Milner
Family Violence/Homicide NDIS providers not integrated with MARAM system training gaps; perpetrator warning signs missed HDS (assault son), PLM partner homicide)
Funding Denials/System Failures Refusal or delay due to prolonged hospitalization or lack community care; delays during activation of plans Samaan Elsamin Peter Bolton Didbala Anzac Kelvin Forrest Andrew Barr
Restraint/Use Of Force Deaths from police clinical restraint acute agitation management protocols de-sensitisation failure Ricky Broughton (police restraint psychiatric transfer)
Progressive Neurological Disease Down syndrome Alzheimer’s cerebral palsy Huntington Lennox Gastaut end-of-life planning gaps adequacy for palliative needs Kristy Mitchener Janelle Lavery Rebecca May Hannah Gray Timothy Rubenach Donna Corlett
Pressure Injuries/Neglect Sacral pressure wounds inadequately managed wound care protocols provider accountability issues Kristy Mitchener Aruma Winn Grove sacrum ulceration sepsis
Drowning/Elopement/Community Incidents Lack risk assessment inadequate supervision escorted leave protocol failures Benjamin Woodhouse Cameron De Vries Carl Adler Source: coronial.com.au | 20th, month unknown in year 2026

Cross-Cutting Systemic Themes

NDIS Funding Denials and Institutional Failure

Several significant cases within this dataset involve instances where NDIS funding refusals directly contributed towards prolonged institutionalisation, inadequate community support leading up to or resulting in death.

Samaan Elsamin aged 21, located in Western Australia with severe treatment-resistant schizophrenia along with intellectual disability; when denied increased community support through an approved NDIS application he remained confined without suitable facilities until his passing under circumstances yet unspecified;
Peter Bolton, a resident from WA who was refused supported living funds which led him into extended hospital stays culminating ultimately as suicide;
Didbala Anzac (age), NT)* experienced delays exceeding one year despite being eligible due to her case falling through while receiving CASPA residential care;
Kelvin Forrest, residing at NSW’s first floor level fell off after waiting for approval on NDIS Supplementary Daily Allowance funding; The above examples illustrate that decisions regarding access to services can be life-or-death determinations highlighting serious human consequences associated even minor setbacks such as delayed approvals of necessary financial assistance provided via NDIS programs.

Aspiration Pneumonia as the Leading Cause of Preventable Death

Aspiration pneumonia caused by choking incidents account most frequently among coronial findings related specifically toward NDIS participants across Victoria(Qld) New South Wales and Tasmania. This pattern align closely within datasets concerning autism where documented dysphagia risks remain uncommunicated between service providers including day centers, mealtime management plans are often absent outdated or not followed food texture classifications also appear ambiguous leading up to fatal outcomes:

Bridie Gilligan aged 42, Cornelia de Lange Syndrome patient choked during lunch time at Endeavour Foundation SIL provider following an abrupt cut in scheduled swallowing assessment never rescheduled,
Mark Capovilla a 39-year-old VIC resident died under circumstances involving disability support program which classified him independently eating yet had previously identified risk from his primary carer despite documentation indicating otherwise; The International Dysphagia Diet Standardisation Initiative (IDDSI), was recommended multiple times due its systemic nature addressing these issues directly.

Family Violence and the NDIS Sector

At least two cases involve instances wherein NDIS recipients were victims of family violence one HDS age18 located in Vic killed by her adult son another PLM aged 40 residing similarly situated victimized by former intimate partner with extensive history of abuse along breaches intervention orders; in both scenarios it has been determined that NDIS services failed integration into MARAM framework thereby preventing effective information sharing among agencies responsible for managing such situations resulting poor coordination response mechanisms. Consequently immediate legislative prescription mandating inclusion within this context alongside mandatory training requirements across all personnel involved becomes imperative.

Deaths During Restraint and Acute Behavioural Episodes

Ricky James Broughton, male aged forty-seven years old passed away whilst being restrained by police while en route to involuntary psychiatric care highlighting critical communication breakdowns where psychiatrist’s findings remained undisclosed amongst responding officers leading up to fatal outcome. Recommendations made towards Victoria Police included de-escalation techniques handling unconscious individuals as well inter-agency collaboration efforts aimed at mitigating similar occurrences involving neurodivergent population groups necessitating specialized law enforcement training specifically tailored toward mental health crisis management.

Pressure Injuries Wound Care SDA Provider Accountability

Kristy Ann Mitchener a 45-year-old female succumbed due secondary infection from sacral pressure ulcer sustained during stay under Aruma/Winn Grove facility; coroner identified lack comprehensive wound care education provided staff failing meet minimum standards set forth through registration process emphasizing necessity conducting unannounced quality assurance checks particularly focusing on prevention strategies surrounding bed sores occurrence.

National Disability Insurance Scheme Amendment Bill

Suicide Risk and NDIS Mental Health Participants

Multiple findings involving NDIS participants dying due to suicide/self-harm include treatment-resistant mental illness such as schizophrenia/schizoaffective disorder; inadequate crisis plans; NDIS funding gaps; ligature risks at psychiatric facilities.

BQ (NSW): Died after hanging on day six without access to comprehensive history/crisis assessment upon admission;
Claire Carroll (VIC) : Died while experiencing severe untreated psychosis despite active support; Haydn McKinley-Glen died in guardianship with detention powers during independent living. The cases collectively point towards integrating better clinical services within funded supports provided through NDfIS.

The Role of the NDIS Quality and Safeguards Commission Across dozens of cases where providers failed, few recommendations were made against individual providers or hospitals/hospitals/government agencies. This may reflect limitations in jurisdictional authority or broader uncertainty about enforcement roles. Several dataset entries predate full regulatory operation commencing July ‘19.’ Calls for greater proactive oversight are supported including mandatory serious incident review, sector-wide learning from coronial findings, regular unannounced audits among registered providers.

Submission 1693

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations Bill, 2026

Submission No.: Submission

Generated on : May , `20` , `2026`

Source: coronial.com.au

Complete Search Results Reference Table(230 Cases)

All results returned from coronial.com.au with search term ‘NDIS’, listed in order of pages. Note: The table includes all cases where an NDIS participant died due to natural disease without identified provider failures.