Submission 2525
Submission Regarding the National Disability Insurance Scheme Amendment (Securing the NDIS
for Future Generations) Bill 2026
Submitted to: Senate Community Affairs Legislation Committee
Submitted by: Deborah May Vine
Date: 25 May 2026
Introduction
My name is Deborah Vine. I am the lifelong primary carer of my 23-year-old daughter who lives with a significant intellectual disability. I am also a Bachelor of Social Work (Honours student) with a developing academic interest in disability policy, equity, human rights, and the impacts of administrative systems on vulnerable populations. I am additionally experiencing temporary physical disability myself due to severe knee deterioration requiring bilateral knee replacement. I make this submission from both lived experience, frontline system navigation and academic experience.
I recognise the Government’s stated intention to improve the long-term sustainability of the National Disability Insurance Scheme (NDIS), address fraud and non-compliance, and ensure the Scheme remains available for future generations and the intent to use algorithms to combat Street Level Bureaucracy and attend to Distributive Justice with parity. However, I am concerned that aspects of the proposed reforms may unintentionally increase barriers for vulnerable participants and carers, reduce procedural fairness, and weaken the participant-centred principles upon which the NDIS was originally established.
Lived Experience of Administrative Failure
For many years, my family experienced significant hardship due to repeated interpretation and data entry errors within the administration of my daughter’s NDIS supports. Despite ongoing engagement with the Scheme, the responsibility for identifying and correcting these errors fell entirely upon me as an unpaid carer already experiencing physical disability and significant carer strain. The consequences were substantial. My daughter did not receive adequate support for her level of need, creating cumulative emotional, financial, physical, and psychological pressure on our family. The process of repeatedly explaining, documenting, justifying, and advocating for basic supports became exhausting and overwhelming.
At the same time, I was managing my own declining mental health and mobility while effectively functioning as:
- advocate, administrator, evidence coordinator, policy interpreter, and case manager. Eventually, through extensive personal effort, I identified the source of the administrative errors myself. Once corrected, my daughter’s funding was adjusted and increased at review. Although the funding outcome improved, the NDIS planner herself felt it was insufficient, pursuing additional review processes was no longer realistically sustainable for me due to the cumulative emotional, financial, psychological exhaustion associated with prolonged system navigation.
However, for the first time in my life, I experienced what sustainable and reliable support could look like. The impact was immediate and profound. The reduction in crisis within our household allowed me, for the first time, to realistically imagine employment, workforce participation, and a future beyond permanent carer exhaustion and survival mode.
Submission 2525
Research has identified that participants and carers frequently experience significant stress, confusion, and inequity associated with navigating complex NDIS administrative systems and review processes (Carey, Malbon, & Blackwell, 2021; Nevile et al., 2019).
Administrative Burden Within the NDIS
My experience also reflects broader concerns regarding administrative burden within the NDIS.
Administrative burden refers to the learning, compliance, and psychological costs individuals experience when navigating complex public systems (Moynihan, Herd, & Harvey, 2015). Within the NDIS, this can include:
- repeated evidence requests, ongoing reassessments, complex review processes, unclear communication, and the constant need to justify support needs.
For participants and carers already managing disability, trauma, financial stress, or exhaustion, these processes are overwhelming.
In my family’s case, the burden of identifying and correcting administrative errors fell entirely upon me as an unpaid carer. This required me to identify why my daughters’ peers with similar disabilities or less needs received exponentially more funding and what the errors were. There turned out to be multiple and significant administrative and interpretation errors, with one NDIS worker commenting ‘your whole backend should be burnt to the ground and we should be starting again’. The emotional labour associated with repeatedly advocating, gathering evidence, interpreting policy, and challenging incorrect decisions became substantial over time. I am concerned that aspects of the proposed reforms may unintentionally increase these burdens through greater standardisation, narrower reassessment pathways, and increasingly compliance-focused administrative systems. While sustainability and consistency are important goals, reforms should also ensure that systems remain accessible, fair, and responsive to the realities of people living with disability and those who support them. Research increasingly highlights that administrative burden within disability systems can disproportionately affect vulnerable populations through excessive learning, compliance, and psychological demands (Moynihan, Herd, & Harvey, 2015).
The Hidden Cost of Caring and Deficit-Based Systems
Research also suggests that carers frequently experience social isolation, deteriorating health, financial insecurity, and workforce exclusion associated with long-term caring responsibilities and complex support systems (Veli-Gold et al., 2023).
It must also be recognised that the burden experienced by full-time carers extends far beyond physical care responsibilities alone. Families like mine who care deeply for loved ones with disability are frequently required to repeatedly describe the people they love in terms of deficits, impairments, behavioural risks, vulnerabilities, and “worst-case scenario” functioning to secure essential supports. This reflects a heavily biomedical and deficit-focused framework that can have cumulative psychological consequences for both participants and carers. Leaving one considering if there is some key word check list they are supposed to magically understand. Over time, the continual requirement to justify support through narratives of limitation and dependency can contribute to emotional exhaustion, hopelessness, social isolation, financial insecurity, reduced workforce participation, and resulted in the erosion of my personal identity beyond the caring role. These impacts form part of the hidden cost carried by unpaid carers and families, yet they are rarely recognised within administrative systems or policy discussions.
Submission 2525
Concerns Regarding the Proposed Reforms
The Government has stated that the Bill aims to:
- clarify eligibility, strengthen guidance around “reasonable and necessary” supports, improve consistency, introduce standardised assessments, and protect the sustainability of the Scheme.
While these goals are understandable, I am concerned that several proposed reforms may unintentionally increase hardship for vulnerable participants and carers.
Ministerial Powers and Reduced Individualisation
I am concerned regarding proposed amendments under ss 34A and 33(2)(ea), which appear to expand ministerial powers to determine or reduce categories of supports through legislative instruments. This is concerning because participants with intellectual disability and complex support needs often require highly individualised and flexible supports that cannot be adequately captured through broad standardisation.
I am also deeply concerned regarding the proposed repeal of Section 31 principles relating to participant plans. Section 31 currently reflects important principles that plans should:
- be participant-directed, individualised, and focused on promoting independence, inclusion, and choice and control.
The removal of these principles’ risks shifting the Scheme toward increasingly standardised and compliance-focused approaches. Research has raised concerns that increasing standardisation within the NDIS may reduce participant agency and undermine individualised approaches to disability support (Carey et al., 2017; Hummell et al., 2025).
Functional Capacity and “Direct” Impairment Requirements
I am deeply concerned regarding proposed changes relating to functional capacity assessments under proposed s 9B, and amendments requiring supports to arise “directly” from a participant’s impairment under proposed s 34(1)(aa). Proposed s 9B defines functional capacity as a person’s ability to undertake activities “without assistance from other people, assistive technology or modifications” and “excluding, as far as possible, the impact of environmental and personal circumstances.” I am concerned this creates an artificial assessment of disability that separates people from the supports, relationships, and environments that shape their actual daily functioning and safety.
My daughter’s ability to participate safely in the community is inseparable from the supports surrounding her. Her intellectual disability interacts with communication barriers, emotional regulation difficulties, dependency, vulnerability, and broader family, and societal functioning. These realities cannot be meaningfully separated into simplistic administrative categories or assessed independently from the supports that enable stability and participation. I am concerned that assessing disability in isolation from assistive technology, environmental supports, informal care, or personal circumstances risks failing to reflect the lived reality of disability and may unintentionally disadvantage participants with complex, intersecting, or fluctuating support needs.
I am also concerned regarding amendments requiring supports to arise “directly” from impairment risks excluding legitimate and necessary supports that are essential to maintain stability, participation, dignity and community inclusion. A narrow interpretation of what arises “directly” from impairment risks excluding legitimate and necessary supports that are essential to maintaining stability,
Submission 2525
participation, dignity, and community inclusion. Research has highlighted that people with intersecting and complex disabilities are particularly vulnerable to exclusion within systems that rely upon narrow impairment definitions and standardised assessment frameworks (Soldatić et al., 2014).
Reassessment and Review Barriers
I am deeply concerned regarding proposed reassessment provisions under s 48A and changes that may narrow access to reassessment and review pathways. My experience hightlights exactly why review pathways are necessary. Many participants already experience substantial difficulty navigating review processes, particularly those with:
- cognitive impairment, psychosocial disability, communication barriers, trauma histories, or limited advocacy support.
Restricting reassessment opportunities risks leaving vulnerable participants trapped in unsafe or inadequate support arrangements for prolonged periods. Research has also identified significant weaknesses in NDIS review and appeal processes, including concerns regarding procedural fairness and access to justice (Thompson, 2022).
Suspension Powers and “Non-Contactable” Participants
I am also concerned regarding proposed suspension provisions under ss 40A and 31A where participants may be considered “non-contactable.” Vulnerable participants may experience:
- homelessness, hospitalisation, mental health crisis, family violence, communication difficulties, or unstable living circumstances.
These realities should not result in the suspension or loss of essential supports. Research suggests that highly compliance-focused systems can disproportionately disadvantage individuals experiencing crisis, instability, cognitive impairment, or limited advocacy support (Carey, Malbon, & Blackwell, 2021).
Automated Decision-Making and Procedural Fairness
I am also concerned about the increasing potential for standardised or automated administrative decision-making processes within the NDIS. Schedule 3, Part 2 of the Bill explicitly allows for the “automation of administrative action” within the NDIS.
My family’s experience demonstrates that even within the current human-administered system, interpretation and administrative errors can have profound consequences. This raises serious concerns regarding any increased reliance on automated compliance, assessment, or decision-making systems without strong human oversight and meaningful participant involvement.
The reforms fact sheet refers to increasing consistency and introducing standardised assessment approaches. While consistency is important, highly automated or compliance-focused systems risk reducing procedural fairness and meaningful participant input into decisions that directly affect people’s lives. Australia’s experience with Robodebt highlights the potential harms that can arise where automated administrative systems operate without human oversight, adequate safeguards, transparency, and review mechanisms are not maintained. Research increasingly warns that highly automated or standardised administrative systems risk reducing transparency, procedural fairness, and meaningful participant involvement in decision-making processes (Gilchrist & Perks, 2023).
Human Rights and the Intent of the NDIS
Submission 2525
The NDIS was established to promote:
-
dignity, participation, inclusion, equity, and choice and control for people with disability. Any reforms to the Scheme must remain consistent with:
-
the objects and principles of the NDIS Act, procedural fairness, and Australia’s obligations under the Convention on the Rights of Persons with Disabilities.
A sustainable NDIS should not be achieved by transferring increasing administrative burden, uncertainty, and psychological strain onto disabled people and unpaid carers. Research has consistently highlighted tensions between increasing administrative control within the NDIS and the Scheme’s original human rights and participant-centred foundations (Olney & Dickinson, 2019; Thompson, 2022).
Recommendations
I respectfully recommend that the Committee consider:
-
Retaining and strengthening the participant-centred principles currently reflected in Section 31.
-
Maintaining accessible reassessment, review, and appeal pathways.
-
Ensuring highly individualised planning remains central to the Scheme.
-
Limiting broad ministerial discretion over support categories without adequate parliamentary scrutiny.
-
Ensuring participants with complex or intersecting disabilities are not disadvantaged by narrow functional capacity or impairment definitions.
-
Ensuring any use of automated or algorithmic decision-making processes remains subject to strong human oversight, procedural fairness safeguards, and accessible appeal rights.
-
Expanding current process to include a draft budget window, that allows participants the opportunity to view and understand budget decisions and correct, administrative errors, overlooked considerations and have meaningful conversations with a human planner offering human oversight of algorithmic generation and ICAN assessment tools.
-
Expanding access to independent advocacy and navigation supports for participants and carers.
Conclusion
The NDIS has ultimately transformed my family’s life for the better when functioning as intended.
Once my daughter’s funding errors were corrected, the improvement to our family’s wellbeing, sustainability, and stability was profound. However, my experience also demonstrates how fragile participant wellbeing becomes when systems are overly complex, difficult to challenge, and administratively burdensome.
I urge the Committee to carefully consider whether the proposed reforms risk intensifying precisely the forms of administrative burden, inequity, and participant distress that research and lived experience have already identified within the current Scheme. I would welcome the opportunity to provide further clarity on any of the points raised in this submission, and I am happy to be contacted by the Committee or to speak in person at any upcoming public hearings.
Submission 2525
References
Carey, G., Malbon, E., & Blackwell, J. (2021). Administering inequality? The National Disability Insurance Scheme and administrative burdens on individuals. Australian Journal of Public Administration. https://doi.org/10.1111/1467-8500.12508
Carey, G., Malbon, E., Reeders, D., Kavanagh, A., & Llewellyn, G. (2017). Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through
the Australian National Disability Insurance Scheme. International Journal for Equity in Health,
16(1). https://doi.org/10.1186/s12939-017-0682-z
Disney, G., Yang, Y., Summers, P., Devine, A., Dickinson, H., & Kavanagh, A. (2025). Social inequalities in eligibility rates and use of the Australian National Disability Insurance Scheme, 2016– 22: An administrative data analysis. Medical Journal of Australia, 222(3), 135–143. https://doi.org/10.5694/mja2.52594
Gilchrist, D., & Perks, B. (2023). See no evil, hear no evil, speak no evil: The grey literature and Australia’s failure to address change in the National Disability Insurance Scheme. Australian Journal of Social Issues. https://doi.org/10.1002/ajs4.270
Hummell, E., Foster, M., Burns, K., & Rimmer, S. (2025). Policy shifts and drifts: From intention to
implementation of Australia’s National Disability Insurance Scheme. Australian Journal of Public
Administration. https://doi.org/10.1111/1467-8500.12689
Moynihan, D. P., Herd, P., & Harvey, H. (2015). Administrative burden: Learning, psychological, and compliance costs in citizen-state interactions. Journal of Public Administration Research and Theory, 25(1), 43–69. https://doi.org/10.1093/jopart/muu009
Nevile, A., Malbon, E., Kay, A., & Carey, G. (2019). The implementation of complex social policy: Institutional layering and unintended consequences in the National Disability Insurance Scheme.
Australian Journal of Public Administration. https://doi.org/10.1111/1467-8500.12380
Olney, S., & Dickinson, H. (2019). Australia’s new National Disability Insurance Scheme: Implications for policy and practice. Policy Design and Practice, 2(3), 275–290. https://doi.org/10.1080/25741292.2019.1586083
Peer, J. (2025). Undesirable present and future of disability support in tropical Far North Queensland, Australia. eTropic: Electronic Journal of Studies in the Tropics. https://doi.org/10.25120/etropic.24.1.2025.4112
Piantedosi, D., Wilding, R., Panisset, M., Molnar, L., Bryant, C., Gibbs, E., & Sawyer, A. (2025). The presence and absence of gender and intersectionality in the 2023 NDIS review: A content analysis. International Journal for Equity in Health, 24(1). https://doi.org/10.1186/s12939-025-02441-2
Smith-Merry, J., & Chang, K. (2025). Equity first: Mapping who gets what is essential to re-designing the NDIS. Medical Journal of Australia, 222(2). https://doi.org/10.5694/mja2.52587
Soldatić, K., Van Toorn, G., Dowse, L., & Muir, K. (2014). Intellectual disability and complex intersections: Marginalisation under the National Disability Insurance Scheme. Research and Practice in Intellectual and Developmental Disabilities, 1(1), 6–16. https://doi.org/10.1080/23297018.2014.906050
Thompson, R. (2022). The National Disability Insurance Scheme review process: Weaknesses and opportunities to enhance the CRPD. Australian Journal of Human Rights, 28(2), 266–285. https://doi.org/10.1080/1323238X.2022.2139882
Submission 2525
Veli-Gold, S., Gilroy, J., Wright, W., Bulkeley, K., Jensen, H., Dew, A., & Lincoln, M. (2023). The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review. Australian Journal of Rural Health. https://doi.org/10.1111/ajr.13011