Safeguarding participant rights and ensuring human oversight of decisions (Individual advocacy)

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Submission 381 - Supplementary Submission

National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations) Bill 2026 - Supplementary

Paper

8 July 2026

People with Disability Australia (PWDA) made a submission to the Senate

Community Affairs Legislation Committee recognising the importance of ensuring the

long-term sustainability of the National Disability Insurance Scheme (NDIS). We

support the objective of maintaining a Scheme that can continue to deliver for future

generations of people with disability. However, sustainability cannot be achieved

through measures that reduce access to essential supports, weaken safeguards or

undermine the rights, safety and participation of people with disability.

PWDA respectfully acknowledges the Committee’s Interim Report and the

recommendations it contains. However, we do not support Recommendation 4 that

the Bill pass in its current form. In PWDA’s view, the evidence received by the

Committee demonstrates that the Bill requires substantive amendment. Our position

remains that the reforms should be evidence-based, subject to full parliamentary

scrutiny and developed in genuine partnership with people with disability.

In our original submission, PWDA made 44 recommendations to strengthen the Bill.

We continue to support all of those recommendations and consider them necessary

to ensure the legislation protects the rights of people with disability while supporting

the long-term sustainability of the Scheme.

Adoption of our recommendations would:

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Submission 381 - Supplementary Submission

safeguard participant rights, including access to independent review and

human oversight of decisions

ensure that financial sustainability measures cannot override participant

safety, dignity, participation and human rights

limit broad ministerial powers and strengthen transparency and accountability

mechanisms

protect participants from suspension, revocation, or loss of supports due to

disability-related barriers

require that implementation of reforms is contingent on the availability of

accessible, funded and operational alternative supports

PWDA acknowledges amendments are under consideration. Amendments adopted

should address the breadth of recommendations put forward by PWDA.

This supplementary paper does not replace or narrow our recommendations. Rather,

it provides additional evidence and real-world case studies in relation to four areas

addressed in our original submission.

The four proposed amendments discussed in this paper are:

Amendment 1 – Ensure continuity to supports and prevent gaps in access

Amendment 2 – Parliamentary oversight of eligibility and funding rules

Amendment 3 – Remove the ‘exhaust all treatments’ requirement

Amendment 4 – Prohibit automated decision-making

This supplementary paper is based on the Bill as introduced and should be read

alongside our original submission. Where amendments currently under consideration

adequately address issues raised by PWDA, we welcome those improvements.

However, we continue to advocate for the adoption of all 44 recommendations

contained in our original submission.

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Discussion

Amendment 1: Ensure continuity to supports and prevent

gaps in access

PWDA’s amendment focusses on a commencement safeguard preventing

implementation of Bill provisions that reduce eligibility, remove participants from the

Scheme, or reduce access to supports until various conditions have been met. It is

acknowledged that it may not be practical to delay reforms until all replacement

supports are fully operational, therefore it is imperative that other safeguarding

options are investigated, using the available evidence for need.

This paper focuses on the following areas:

Continuity of support

Demonstrated need

Preventing adverse outcomes during transition

Ensuring safeguards do not unintentionally capture people who would

naturally exit the Scheme under existing arrangements.

Continuity of support, demonstrated need and preventing

adverse outcomes during transition between systems

For people with psychosocial disability, it is established that continuity of support is

negatively impacted where alternative systems are unable to efficiently meet need.

Research by Tania Shelby-James and Megan Rattray has identified a funding

inequity in which supports delivered outside the NDIS through federal and state

programs fall well short of those available under the Scheme.1 The result is unmet

need. This has been backed by the Government’s own analysis of unmet need in

2024, which found that in the preceding two years, 493,600 people aged 12–64

years with a severe or moderate mental illness who required psychosocial support

1 Shelby-James, T., & Rattray, M. (2025). The future of psychosocial supports in Australia: Are the recommendations from the National Disability Insurance Scheme Review the answer? Community Mental Health Journal, 61(7), 1294–1298. https://doi.org/10.1007/s10597-025-01467-8 3

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were not receiving psychosocial supports through the NDIS or other

government‐funded programs.2

Discontinuing supports when alternative systems are currently failing to meet need

will exacerbate the existing issue.

Acceptable evidence that alternative supports are available must demonstrate

practical accessibility, not theoretical existence; that is, services that are funded,

operational, and with sufficient workforce capacity to meet need in the participant’s

geographic location without a waitlist. An adequate replacement system is one that

delivers equivalent functional outcomes to the support being replaced, at no

additional cost to the participant, as a legal entitlement rather than a discretionary

provision subject to funding availability.

In their submission, Mental Health Carers Australia pointed to provisions relating to

needs assessments reducing the amount of funding received and therefore, impact

on support that people with psychosocial disability receive, noting ‘the number of

people needing psychosocial support will increase and the impact on hospitals will

be dire’ (p.5).3 This was corroborated by the Australian Psychosocial Disability

Collective who noted that lost support will show up in systems including health

systems through increased hospitalisation, homelessness and mental health crises

including suicidality (pp.1-2), or in other words, being ‘diverted into underfunded

systems that cannot provide equivalent individualised assistance’ (p.2).4

Maintaining support for people with disability also matters for the people who support

them. One of the original intentions of the NDIS was to enable workforce

participation, including for family carers. As Dickinson and Kavanagh observed in

2 Department of Health and Aged Care. (2024). Analysis of unmet need for psychosocial supports outside of the National Disability Insurance Scheme: Final report (p. 76). Australian Government. https://www.health.gov.au/resources/publications/analysis-of-unmet-need-for-psychosocial-supports outside-of-the-national-disability-insurance-scheme-final-report?language=en 3 Mental Health Carers NSW. (2026). Submission to the inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (Submission No. 418) [Submission]. Senate Community Affairs Legislation Committee, Parliament of Australia. https://www.aph.gov.au/DocumentStore.ashx?id=2fe36a35-59f9-4f1f-8050 130ebb51bdf1&subId=792482 4 Australian Psychosocial Disability Collective submission. Submission to the inquiry into the National

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

(Submission No. 554) [Submission]. Senate Community Affairs Legislation Committee, Parliament of Australia. https://www.aph.gov.au/DocumentStore.ashx?id=77ebbdb0-065d-4519-a159 d7893ab58275&subId=791757 4

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2022, a 4% reduction across NDIS plans risked adverse impacts for the family

members supporting participants, with reports of carers having to leave the

workforce and move onto welfare payments in order to supplement the support their

family member lost to the funding cuts; informal support had to step in where formal

support left off.5

PWDA heard during our recent campaign from members about the benefits of the

NDIS and supports to their lives. Participants shared testimony about the life

changing benefits and opportunities that had been enabled through scheme access:

‘I’m still here because of the NDIS. Not because I look “disabled enough.” Not

because I fought harder than anyone else. Because the NDIS funds the supports

that keep me safe and alive — even when my disability isn’t visible to the outside

world.’ Person with traumatic brain injury (TBI)

‘The support my children receive is not a luxury; it prevents crisis, family breakdown,

school disengagement, and worsening mental health. Through both my personal and

professional experience, I see families already operating at capacity, and I fear that

removing supports before genuine alternatives exist will simply shift the burden onto

carers, schools, health services, and families who are already struggling to cope.’

Parent of two children who are neurodivergent and NDIS Support Coordinator.

A significant concern around systems transition is participants experiencing

premature exit from the Scheme. Robust clinical assessment is essential to ensure

any apparent improvement being used as a reason to exit a participant from the

Scheme is a genuine reduction in need; not a moment-in-time gain, but a gain

sustained over the long-term.

Using perceived recovery as a reason to exit a participant warrants close scrutiny.

The Australian Psychosocial Disability Collective cautioned that, for people with

psychosocial disability of any age, perceived recovery is not a sound basis for

natural Scheme exit: there is no clinical basis for treating it as a determination that

supports are genuinely no longer required. ‘The legislation should not treat supposed

5 Dickinson, H., & Kavanagh, A. (2022, March 28). What we know about the NDIS cuts, and what they’ll mean for people with disability and their families. The Conversation. https://doi.org/10.64628/AA.3yxewrr74 5

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“recovery” as a reason to exit people from the Scheme… While the term “recovery,”

often used in research and debates regarding psychosocial disability, does not

explicitly appear in the Bill, its underlying logic is woven throughout the legislative

framework in ways that strongly reflect a recovery type model aligned with clinical

improvement, treatment compliance, and potential exit from the Scheme’ (p.2).6 The

NDIA’s own Psychosocial Disability Recovery-Oriented Framework recognises that a

person with psychosocial disability can be in ‘personal recovery’, finding meaning in

their life, yet still be experiencing the functional impacts of psychosocial disability

because it is fluctuating or episodic, generating ongoing need for supports (Principle

5, p.12).7

During our recent campaign, PWDA heard from people who feared falling into this

gap:

‘My condition is considered permanent by my doctors (specialists) and under current

NDIS legislation, however it is a debated and under researched condition that

sometimes can see remission (not cure) in a small percentage of patients. While my

symptoms have been progressive and are unlikely to improve due to my disability

and comorbid conditions, under the new legislation individual circumstances will not

be considered. This places people like me who have severe permanent conditions at

risk of being mislabeled [sic].’ Person with severe physical and neurological

disability (with progressive symptoms)

Recent research by Choi, Ellem and Drayton has highlighted that the current

approach to capacity building within the NDIS may also be insufficient to understand

recovery for participants with psychosocial disability, in qualitative and individualised

terms (2025, p. 2).8

6 Australian Psychosocial Disability Collective submission. Submission to the inquiry into the National

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

(Submission No. 554) [Submission]. Senate Community Affairs Legislation Committee, Parliament of Australia. https://www.aph.gov.au/DocumentStore.ashx?id=77ebbdb0-065d-4519-a159 d7893ab58275&subId=791757 7 National Disability Insurance Agency. (2021). Psychosocial disability recovery-oriented framework.

Australian Government. https://www.ndis.gov.au/media/3957/download

8 Choi, Johnny, Ellem, Kathy, and Drayton, John (2025). Supporting the recovery of NDIS participants with psychosocial disability: a narrative literature review. Australian Journal of Social Issues 60 (4) 1038-1051. https://doi.org/10.1002/ajs4.70005 6

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Under the current Act, exit can occur when the person no longer satisfies

requirements under section 24, or early intervention requirements under section 25.

Amendments to section 30 under the NDIS Amendment Bill (Schedule 1, Part 7;

Schedule 1, Part 9) relate to CEO powers to revoke eligibility, and neither trigger

identified uses ‘recovery’ as a criterion.

The sequencing of NDIS reform changes around participant exit arrangements and

Foundational Supports being ready was identified as a risk in the submission made

by State and Territory Disability Ministers, noting that changes go beyond agreed

arrangements for Thriving Kids: ‘This sequencing risks creating new service gaps,

placing preventable pressure on other disability services, universal systems and

state-based services. This will exacerbate difficulties people with disability have

accessing the services they need’ (p. 8).9

In the absence of amendments relating to transition of participants between the

Scheme and alternative systems including Foundational Supports, bilateral

agreements and NDIS rules will be the place where shifts between systems will be

formalised.

Recommendation 1: No participant should be exited from the Scheme unless there

is demonstrable clinical and service evidence specific to that person that currently

available, alternative services and/or supports can meet their need; that is, not a

service or support that is planned, under development, funded in-principle, or

expected to become available in future. This would sit in Schedule 1, Part 7 and Part

9 with safeguards attached to amendments relating to revoking powers under

section 30 and cross-referenced to a participant no longer meeting eligibility criteria

under sections 24 and 25.

Recommendation 2: Any reassessment relating to a participant’s ability to meet

eligibility criteria on an ongoing basis under sections 24 and 25 must be supported

by demonstrable clinical evidence of enduring, positive capacity change for that

participant, not a point-in-time observation. This requires an amendment to Schedule

9 State and Territory Disability Ministers. (2026). Submission to the inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (Submission No. 508) [Submission]. Senate Community Affairs Legislation Committee, Parliament of Australia. https://www.aph.gov.au/DocumentStore.ashx?id=bdf67694-ad3b-4d68-a87e c3989184f552&subId=793974 7

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1, Parts 1, 2 and 8, with connection to safeguarding changes to section 30

suggested under Recommendation 1.

Ensuring safeguards do not unintentionally capture people

who would naturally exit the Scheme

Children accessing the NDIS who are affected by natural exit from the Scheme are a

significant cohort to consider when ensuring that safeguards created by Bill

provisions do not unintentionally capture them. In 2024–25, 14,123 participants left

the Scheme. This was 14% above the expected figure of 12,384, and 92% higher

than the 7,353 exits in 2023–24. The NDIA attributed these higher-than-expected

rates mostly to children aged 0–8 who had entered via the early intervention

pathway. Participants who exited the Scheme due to mortality were excluded from

the data (NDIA, 2025, pp. 23, 62).10

For children, supports build developmental capacity to meet milestones, so Scheme

exit can be appropriate once those milestones are met and needs reduce. For these

children and their families, unintentional capture within the Scheme caused by

safeguarding mechanisms around exit provisions may carry unwelcome

consequences. These include ongoing administrative processes around assessment

and planning, which place an unnecessary burden on families who may already be

stretched for time and capacity. Safeguards are critical to ensure participants are not

exited from the Scheme when supports are still needed; however, they must not

overcorrect by retaining participants who may be adversely affected by that

retention. It is critical to understand: this does not mean exiting participants

before they are ready to exit.

For example, a family already self-funding services for one child found ineligible for

the Scheme might now face funding additional children who are exited under revised

policy settings

‘We are a single income family, low income at that. We have had to absorb our

daughters [sic] therapy costs for the last 4 years as NDIS declined her for early

intervention funding whilst other children who presented less than her were granted

10 National Disability Insurance Agency. (2025). Annual financial sustainability report 2024–25.

Australian Government. https://www.ndis.gov.au/media/8183/download

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funding. Now with the NDIS changes, we are looking at our daughter who is currently

on NDIS, to either be removed or funding heavily reduced. We cannot afford any

further costs, and the gap we have been trying to bridge on their education because

of the lack of supports is going to expand even further!’ Parent of two children with

significant but differing needs.

Recommendation 3: The safeguards proposed in Recommendations 1 and 2 must

not unintentionally capture children and families within the Scheme where supports

are no longer required. This would likely require a new provision. This could be

placed within the early intervention and reassessment provisions, which would

establish an exit pathway for children who have genuinely and enduringly met

developmental milestones. This would ensure that the evidentiary standard required

by Recommendation 2 continues to protect children from premature exit from the

Scheme when they still require supports, while also preventing unnecessary

retention in the Scheme if they no longer require supports. The bar in both directions

must be clinically sound evidence.11

Amendment 2: Parliamentary oversight of eligibility and

funding rules

PWDA’s amendment proposes that the following elements of NDIS functions be

established through primary legislation or disallowable legislative instruments subject

to parliamentary scrutiny:

Eligibility thresholds

Functional capacity criteria

Funding caps

Support reduction frameworks

Alternative support arrangements

The safeguards necessary to govern support reduction frameworks and alternative

support arrangements are addressed through Recommendations 1 and 2 in

11 Cautionary note: Recommendations 1-3 relate to the standard of evidence required before an exit or retention decision is made, not to the method by which that evidence is gathered. Together, the recommendations should not be taken as an overarching recommendation for a new assessment tool to be developed for clinical evidence gathering. 9

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Amendment 1, which establish the clinical evidence standard required before any

participant exits or transitions from the Scheme. Amendment 2 builds on those

safeguards by addressing the mechanism through which rules governing these

elements are made and scrutinised.

The current mechanism is structurally inadequate. Under section 209 of the National

Disability Insurance Scheme Act 2013, the Minister may make NDIS rules by

legislative instrument. Primary legislation requires deep scrutiny upon introduction

into Parliament; NDIS rules do not carry the same obligation. Parliament is being

asked to vote on NDIS reform without sight of the rules that will drive those changes,

and people with disability and their supporters are being asked to trust a process that

offers no structural assurance against harm. Compounding this, NDIS rules are

excluded from sunsetting provisions because they operate under an

intergovernmental process, meaning there is no mechanism that requires rules to be

re-tabled and tested for whether they remain fit for purpose for the people they

affect, and rights compliant.

The consequences of this inadequacy are already evident. In 2024, implementation

of the National Disability Insurance Scheme Amendment (Getting the NDIS Back on

Track No. 1) Act 2024 created significant problems for participants. The NDIA’s own

post-implementation analysis acknowledged failures that more thorough

parliamentary scrutiny prior to rule implementation may have prevented, primarily in

relation to the NDIS support lists. Around fifty separate guidance documents and

FAQ were issued after rules took effect on 3 October 2024 to address confusion and

provide clarification, many not released until late in the year and some matters still

unresolved at year’s end.12 With proper scrutiny beforehand, much of the resulting

confusion and harm could have been anticipated.

Participants felt the impacts of the changes immediately:

‘I would be in a care home without NDIS support, and I definitely wouldn’t have the

quality of life I have today. However, since changes rolled out in November 2024,

items and resources essential to my well being are no longer accessible through the

12 National Disability Insurance Agency. (2025). NDIS reform evaluation: Summary report on the first three months. Australian Government. https://dataresearch.ndis.gov.au/research-and evaluation/evidence-helps-us-improve-ndis/ndis-reform-evaluation 10

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NDIS. These are not items I want; they are items I need to assist with my lack of

functional capacity (if I were not like this I wouldn’t purchase or use these items) and

assist me in maintaining my independence. Because I need these items I am now

having to pay for them myself, which reduces the quality of food I eat and

supplements that I’m supposed to take. What has started out as a life changing

system is now slowly destroying my quality of life, should my support hours be

reduced domestically and social and community access I am very worried that I will

almost end up back where I started with being housebound.’ Person with myalgic

encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Another participant described how previous funding cuts shifted the cost of supports

and aids onto them and their family. It also forced a change in their housing

circumstances so their needs could be met.

‘The help the NDIS provided in 2020 was incredible. They covered psychology,

physiotherapy, OT, dietician, a support worker as well as aids such as noise

cancelling headphones.

However I have slowly had funding cut. It has been difficult to prove that my POTS

and EDS are permanent disabilities to the NDIS - despite all scientific evidence

suggesting they are incurable, serious and incapacitating (and can even have deadly

complications, such as CCI, anaphylaxis from MCAS, heart issues, stroke risk,

fainting on a staircase or suicidality due to very low quality of life). Coupled with a

lack of recognition by the PBS, this has meant my medication and mobility aids

from vasoconstrictors, mast-cell stabilisers, compression leggings and wheelchair - I

paid for myself with the aid of my parents.

Since these cuts to my plan, I have moved back in with my parents, and lost

physiotherapy which helps with mobility and chronic pain. I also lost my dietician who

helped me with autistic eating habits, mast-cell allergies and salt intake. I have lost

most work and social life. I lost a relationship to carer’s burnout.’ Person with

autism, ADHD, FND, POTS, CPTSD, OCD, hypermobility and mast cell

activation issues.

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These are not isolated experiences. They are the predictable consequence of rules

that carry significant policy weight, yet they are not appropriately scrutinised prior to

implementation.

In 2024, in its scrutiny of earlier reforms, the Senate Standing Committee for the

Scrutiny of Bills raised heightened concerns with NDIS rules lacking the scrutiny of

primary legislation, purely because they operate under an intergovernmental process

and are therefore excluded from sunsetting provisions meaning there is no expiry

date triggering automatic review of rules (p. 27).13 The concern relates to the rule

making powers within the NDIS Act: the Committee posited that rules carrying

‘significant policy matters’ would be more appropriately handled through primary

legislation, without the limited scrutiny that sunsetting provisions provide (p. 28).14

Changes to NDIS rules require proper parliamentary scrutiny prior to implementation.

This is how readiness is assessed. This must be a transparent process, with people

with disability, their families, carers and other supporters, and their representative

organisations able to see what oversight has taken place and what actions were

taken as a result of it. There must also be a safeguard provision that no participant is

left without support because of rule changes. That is, where an alternative service is

not currently available, or where Foundational Supports are not yet developed and

functional, a participant must not be removed from the Scheme.

Recommendation 4: Statements of Compatibility for NDIS rules made under section

209 must be subject to assessment by the Parliamentary Joint Committee on Human

Rights as a precondition to rules taking effect. Ministerial self-assessment does not

constitute independent scrutiny; the Committee’s assessment must occur before

implementation, not concurrently with or subsequent to it. Prior to that assessment,

meaningful consultation must have been undertaken with people with disability and

their representative organisations, with evidence of that consultation and any

resulting changes documented and publicly available.

13 Senate Standing Committee for the Scrutiny of Bills. (2024). Scrutiny digest 6 of 2024 (pp. 27–28). Parliament of Australia. https://www.aph.gov.au/ /media/Committees/Senate/committee/scrutiny/scrutiny_digest/2024/d6_24.pdf 14 Ibid. 12

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Recommendation 5: NDIS rules that carry significant policy powers under the NDIS

Act should be elevated to primary legislation, subject to full parliamentary scrutiny.

Where rules must remain as delegated legislation, sunsetting provisions must apply

without exception, including where an intergovernmental process is involved. The

current intergovernmental exclusion from sunsetting is not a legitimate basis for

removing parliamentary oversight; it is a structural loophole that allows rules with

material consequences for people with disability to operate indefinitely without

review. At each sunset trigger, the scrutiny standards established under

Recommendations 4 and 6 must apply.

Recommendation 6: Parliamentary scrutiny of NDIS rule changes must include a

formal human rights analysis against relevant international instruments, applied

proportionately to the scope and nature of each rule change. This must be published.

In the absence of a federal Human Rights Act, the applicable instruments are (all

ratified except UNDRIP, which is endorsed):

Convention on the Rights of Persons with Disabilities (CRPD)

International Covenant on Economic, Social and Cultural Rights (ICESCR)

International Covenant on Civil and Political Rights (ICCPR)

Convention on the Rights of the Child (CRC): where participants are children

or rules affect families with children with disability

Convention on the Elimination of All Forms of Discrimination Against Women

(CEDAW): where rule changes produce gendered impacts, including on

women with disability and unpaid carers

Convention Against Torture and Other Cruel, Inhuman or Degrading

Treatment or Punishment (OPCAT): where support restrictions expose

participants to neglect, abuse, or degrading conditions, particularly in

residential or institutional settings

United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP):

where rule changes disproportionately affect First Nations participants.

Recommendation 7: No rule should proceed where modelling demonstrates it

would leave any participant without supports they require, where: (a) no appropriate

alternative supports outside the NDIS are currently available to them; or (b) the

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relevant Foundational Supports have not yet been developed and are not yet

functional. It is recommended that the modelling be undertaken by the Productivity

Commission, which has established institutional history with NDIS analysis and

reports to Parliament, rather than to the responsible Minister. Where the Productivity

Commission is unavailable or has a conflict of interest, the modelling must be

conducted by a body approved by the relevant Parliamentary committee, not

nominated by the Minister. The methodology and findings must be publicly available

before any rule takes effect.

Amendment 3: Remove the “exhaust all treatments”

requirement

Under the NDIS Amendment Bill, Schedule 1, Part 8 (new s 25A) proposes that a

person must exhaust all appropriate treatment options before an impairment can be

found permanent, regardless of whether treatment is financially or geographically

accessible.

PWDA has noted the need to distinguish between:

compelling a person to undertake treatment

creating circumstances where a person is effectively required to undertake

treatment in order to avoid losing supports

creating a situation where people technically retain a choice but still

experience significant pressure to pursue treatment, where declining results in

reduced access to support.

Under the UNCRPD, Article 17 specifically protects the right to physical and mental

integrity on an equal basis with others, a right that is directly engaged when the State

conditions access to support on a person having undergone medical treatment.15

The Australian Law Reform Commission confirmed in Equality, Capacity and

15 United Nations. (2006). Convention on the Rights of Persons with Disabilities, Article 17. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with disabilities/article-17-protecting-the-integrity-of-the-person.html 14

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Disability in Commonwealth Laws (p. 282)16 that competent adults have an

established common law right to refuse treatment. The Australian Charter of

Healthcare Rights affirms the right to make informed decisions, including about the

risks of treatment. 17 A provision that penalises a person for exercising that right has

no place in legislation that purports to be consistent with the Convention.

During the final day of public hearings by the Senate Committee on Community

Affairs, Acting First Assistant Secretary, Department of Health, Disability and Ageing,

Ms Erin Rule confirmed participants would not be forced to take treatments named

by the NDIA.18 That assurance does not extend to treatments named by the medical

professionals whose evidence underpins an eligibility application.

PWDA has heard about the challenge facing people with disability who have no clear

treatment pathway, and for whom experimental treatments may offer no real benefit.

For these participants, a requirement to exhaust all appropriate treatment could in

effect compel them into experimental trials. This raises the question of what risk

threshold applies under this criterion, and what evidence of treatment efficacy,

weighed against the risk of adverse effects or complications, will be required.

‘I live with Hypermobile Ehlers-Danlos Syndrome (hEDS), a severe genetic

connective tissue disorder that causes joints throughout my body to dislocate —

sometimes multiple times a day. hEDS causes progressive joint instability, spinal

degeneration, mobility impairment, disabling fatigue, and widespread systemic

complications.

There is no standardised treatment for my condition. Much of my life has become an

exhausting cycle of surgeries, hospital admissions, experimental procedures,

rehabilitation, and pain management that may or may not work. I spend months

16 Australian Law Reform Commission. (2014). Equality, capacity and disability in Commonwealth laws (ALRC Report 124). Australian Government. https://www.alrc.gov.au/publication/equality capacity-and-disability-in-commonwealth-laws-alrc-report-124/ 17 Australian Commission on Safety and Quality in Health Care. (2019). Australian charter of healthcare rights (2nd ed.). https://www.safetyandquality.gov.au/resources/australian-charter healthcare-rights-second-edition-a4-accessible

18 Community Affairs Legislation Committee. (2026, June 9). National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations) Bill 2026 [Official committee Hansard] (p. 52). Parliament of Australia. https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22committees%2Fcom msen%2F29695%2F0001%22 15

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every year in hospitals hoping the next intervention might stabilise my body enough

to preserve some quality of life - or at bare minimum, stop my arms and legs from

dislocating off my body.

As the degeneration worsens, I face increasing loss of mobility, permanent reliance

on a wheelchair I am yet to receive funding for, and serious long-term complications

associated with this disease.’

For participants who are Deaf, treatment options such as cochlear implants or other

artificial sound enhancement like hearing aids can be deeply at odds with a strong

sense of cultural identity, rooted in a primary language of Auslan (Australian Sign

Language) or other sign languages.

Chief Executive Officer of Disability Advocacy Network Australia (DANA) reflected on

the concern for people who are blind in the Inquiry hearing: ‘this notion of appropriate

treatment is terrifying to me personally, because, if someone said to me tomorrow,

‘You can have your sight back,’ I don’t know that I’d want it—but I also want the

NDIS, and I think I should have the right to choose. Secondly, for people who have

acquired their impairment recently, who are grieving—because it is a grief process—

and who are often traumatised, to even be asked those questions is deeply, deeply

distressing for many people’ (p. 52).19

Recommendation 8: Schedule 1, Part 8 of the National Disability Insurance

Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 should

be amended to insert a new subsection 25A(2A) qualifying what constitutes

appropriate treatment for the purposes of the permanence test. As currently drafted,

section 25A(2) provides that treatment may be appropriate regardless of whether a

person’s individual circumstances restrict their access to it. This creates a provision

that can deem treatment appropriate regardless of whether it is accessible or

affordable for the individual, with no requirement that it also be culturally safe or

available within a reasonable timeframe. A new subsection 25A(2A) should provide

that, despite subsection (2), treatment is not appropriate treatment for the purposes

19https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22committees%2Fco mmsen%2F29695%2F0001%22 16

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of this section unless, having regard to the person’s individual circumstances, the

treatment is:

a) accessible to the person, including having regard to their geographic location; b) affordable, including having regard to their financial circumstances; c) culturally safe; and d) available within a reasonable timeframe that does not result in a gap in support or deterioration of the person’s condition.

Recommendation 9: Schedule 1, Part 8 of the National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations) Bill 2026 must be amended

to make clear that the permanence test under sections 24 and 25 is not a treatment

mandate. The assurance given at the Senate Committee hearing, that the NDIA will

not direct participants to undertake treatment, does not cover treatments

recommended by the medical professionals whose evidence supports an eligibility

application.

As drafted, requiring a person to have undertaken all appropriate treatment in order

to meet the permanence test places pressure on them to pursue treatment in three

ways, each at odds with the right to physical and mental integrity under Article 17 of

the CRPD:

a) where a person is directly required to undertake treatment; b) where a person is effectively required to undertake treatment to avoid losing supports; and

c) where a person keeps a nominal choice but faces real pressure to pursue treatment, because declining means reduced or lost supports.20

Amendment 4: Prohibit automated decision making

Schedule 3, Part 2 sets out the automated decision-making provisions for the

Scheme, which will take effect under a new section 59. It will give the CEO express

20 Cautionary note: A person who risks losing their NDIS supports if they decline treatment does not have a genuine choice about whether to undertake that treatment. The Bill should make clear that declining treatment cannot, by itself, be the reason a person loses or has their supports reduced, provided they otherwise meet eligibility criteria. 17

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statutory authority to arrange automated administrative action under their oversight,

while keeping decisions that involve judgement or discretion in human hands, and

allowing the Minister to expand what can be automated through later legislative

instrument.

The Justice and Equity Centre (JEC) noted in its supplementary submission to the

inquiry that any use of automated decision-making must be ’tightly constrained and

subject to robust safeguards’.21 The JEC recommends that the designation of

provisions for automated decision-making under proposed s 59C(1) be confined to

the discrete functions for which automation is justified, rather than extending to entire

sections of the Act.

In plain terms, this means a computer program should not be permitted to decide

what supports a participant receives in their old framework plan. That approval

decision, made by the CEO under s 33(2) must remain a human decision, not one

made by a computer. Automation should reach only the narrow, mechanical task of

sorting approved supports into groups under s 33(2E), which is the single function

the Explanatory Memorandum justified (p.131).22

The case of Rhys Cauzzo, examined by the Royal Commission into the Robodebt

Scheme, shows what can happen when an automated system removes a safeguard

that should have protected a person at risk.23

Rhys Cauzzo was a young Melbourne man who lived with anxiety and depression.

He relied on the social security system, and at the time of his death he was claiming

the Disability Support Pension. His mother, Jennifer Miller, gave evidence to the

Royal Commission into the Robodebt Scheme about what happened to him.

21 Justice and Equity Centre. (2026). Supplementary submission to the inquiry into the National

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

(Submission No. 82.1 [Supplementary Submission]. Senate Community Affairs Legislation

Committee, Parliament of Australia. https://www.aph.gov.au/DocumentStore.ashx?id=e30270c0 920c-4de2-a13e-57cc965d5066&subId=790078 22 Parliament of Australia. (2026). Explanatory memorandum: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (p. 131). Commonwealth of Australia. https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22legislation%2Fems% 2Fr7487_ems_35e6531f-c440-4faf-98d6-7c7ddd8bd539%22 23 Royal Commission into the Robodebt Scheme. (2023). Report of the Royal Commission into the Robodebt Scheme (pp. 182, 354). Commonwealth of Australia. https://robodebt.royalcommission.gov.au/publications/report 18

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Centrelink uses a marker on a person’s record to indicate that a person is

experiencing complex personal circumstances called a vulnerability indicator. For Mr

Cauzzo, this indicator was on his Centrelink between 2010 and 2012 (p. 354). It was

reviewed and ended without evidence for any change in circumstance in February

In September 2015, during an assessment for his Disability Support Pension claim,

Centrelink’s own assessor recorded that Rhys had anxiety and depression and had

reported suicidal ideation (p. 354), which should have triggered the vulnerability flag

being put back on his file; it did not happen.

In May 2016, Robodebt’s automated system selected Rhys for a compliance review.

At the time, even though Centrelink held information showing he was at risk, his

record did not have a vulnerability flag (p. 354). As a result, the system triggered

contact to hm own debt. Over the following months he received a stream of letters

and calls, and his debts were handed to a private debt collector, who contacted him

many more times. Rhys took his own life on 26 January 2017.

The Royal Commission was clear that a vulnerability flag should have been on his

file, and that if it had been, it would have triggered extra responsibilities in how

Centrelink dealt with him, including exercising caution before taking compliance

action and taking his vulnerability into account (p. 182). Mr Cauzzo was failed at two

points, one automated and one human: a flag removed automatically, and a known

risk never recorded. Two simple safeguards would have changed the outcome: a

flag that cannot be switched off automatically, and a requirement that a documented

risk, such as a recorded diagnosis and suicidal ideation, be carried onto the record

before any automated process acts on the case.

Recommendation 10: Schedule 3, Part 2 of the National Disability Insurance

Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 should

be amended to provide that a computer program must not be used to remove,

suspend, expire or override any safeguard, flag or indicator that protects a

participant identified as vulnerable or at risk, or that determines whether a decision

receives human consideration. The removal of any such protection should require a

decision by a human delegate. Where the Agency holds information indicating that a

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participant is at risk or vulnerable, that information should interrupt automated

processing and route the matter to a human delegate.

Recommendation 11: Before any automated decision-making system is

implemented under Schedule 3, Part 2, it should be tested to confirm it correctly

identifies and protects participants who are vulnerable or at risk, including how it

handles incomplete records and conflicting information. The system also requires

safeguards for redirecting decisions that should be handled by a human delegate.

The methodology and results of that testing should be documented and made

available to the relevant Parliamentary committee before the system takes effect.

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