NDIA Accountability Project

Treatments must be available in practice, not just in theory

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Submission 1652

Submission to the Senate Community Affairs Legislation Committee

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

Date: 24th of May 2026

Introduction

Thank you for the opportunity to make a submission to the inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I make this submission from the perspective of someone with lived experience as an NDIS participant, who routinely does volunteer work as an advocate.

I agree that the NDIS must be sustainable. Fraud, poor-quality supports, ineffective spending and exploitation should be addressed.

However, I am deeply concerned that parts of this Bill may unintentionally increase long-term costs while worsening participant distress, reducing trust, delaying support, increasing crisis presentations, and making the scheme less collaborative.

My submission is that there is an alternative path to achieve sustainability. One that not only could drastically reduce costs, but also increase quality of life for participants. I will speak to this path today. However, first I will begin with my concerns about the present bill.

1. Treatments must be available in practice, not just in theory.

Under this bill, a person may be found ineligible for the scheme, or for particular supports, on the basis that a treatment, service, or mainstream support is considered theoretically available, even where it is not genuinely able to be accessed in practice. This is a concern.

The existence of a treatment or service does not guarantee equitable access to it. Access may be limited or prevented by cost, location, transport barriers, disability-related limitations, health risks, service availability, or other practical constraints.

I am also concerned that participants may feel pressured to undergo treatments which may not be clinically appropriate for them, in order to access supports.

Submission 1652

Some treatments may carry significant risks, side effects, or contraindications for particular individuals. Participants should retain the right to make appropriate, informed medical decisions in consultation with their treating professionals without fear that declining a treatment may prevent access to disability supports.

Functional Capacity Cannot Be Understood Without Context

Accurately assessing the extent and impact of a person’s disability requires careful consideration of the broader context of their life and circumstances. Assessments should take into account:

  • barriers to accessing treatment, services, or supports
  • access to transport and other essential resources
  • financial circumstances and affordability
  • housing stability and living environment
  • fluctuating capacity, episodic conditions, and periods of deterioration
  • mitigating or compensatory strategies, including any physical, psychological, and social costs associated with relying on those strategies
  • the extent, reliability, and sustainability of informal supports
  • any ways in which reliance on informal supports may compromise a participant’s dignity, autonomy, relationships, wellbeing, independence, privacy, or safety
  • any ways in which reliance on informal supports may contribute to carer burnout, financial stress, reduced workforce participation, or declining physical or mental wellbeing among carers and family members
  • genuine informal support capacity, not theoretical informal support capacity

Assessments that do not consider the broader context of a participant’s circumstances risk:

  • Wellbeing
  • Dignity
  • Safety
  • Neglect
  • Breakdown of informal supports
  • Isolation

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  • Housing instability

  • Injury

  • Domestic Violence

Informal caring roles are often intensive, exhausting, and difficult to sustain over time.

Where formal supports are insufficient, disabled people may rely on informal supports to an unsustainable extent, putting themselves and their networks at risk.

It is important that these factors are taken into account.

3. Invisible Physical Disability and Fluctuating Functioning Must Be Properly Recognised

I hold concerns about the impact of changes to functional capacity measures on people with invisible or dynamic disabilities.

Many people with these conditions may appear to have increased function at times, because they are carefully pacing their activities and rely on recovery periods between tasks.

A participant may be able to cook a meal, attend an appointment, clean, shop, or leave the house. However, the relevant question is not whether they can perform a task for an assessor, but whether they can do so safely, repeatedly, and sustainably without causing deterioration or loss of capacity in other areas of life.

Without accounting for these cumulative impacts, assessments risk overstating functional capacity and underestimating support needs. Assessments that do not take context into account risk measuring short-term performance rather than sustainable functioning. This is particularly a concern where participants may overperform in assessment settings, followed by a subsequent decline. Such performance does not reflect stable or enduring capacity.

4. Limiting Unscheduled Plan Reassessments Risks Delayed Outcomes and Preventable Incidents

The Bill proposes to limit unscheduled plan reassessments by requiring participants to show significant and ongoing changes in support needs linked to their accepted impairments.

This is of concern, as participant circumstances frequently change in ways that are important, but that may or may not meet this threshold.

For example:

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  • A 10% increase in continence aids needed, due to a deterioration in a neurological condition or

  • A participant’s informal supports undergoes chemotherapy, meaning they cannot care for the participant for a three month period

The proposed change may also limit how effectively and efficiently funds are used. If access to plan changes are limited, participants may continue to access supports or therapies that are ineffective for them, in place of supports or therapies that may result in better outcomes.

It is also important that if a participant’s needs have changed, the scheme is able to respond before a crisis occurs. Waiting until the situation becomes severe enough to meet a high reassessment threshold may increase incidents, restrictive practices, informal support breakdown, health deterioration, and safety risks.

Value for money is increased when supports are accurate to a participant’s current needs.

Administrative Evidence Loops Are Driving Waste and Burnout

The Bill appears to increase scrutiny around functional capacity, impairment linkage, reassessment access, reasonable and necessary supports, and evidence. I am concerned this will increase the amount of money spent on evidence generation rather than direct participant outcomes.

One of the largest inefficiencies I have observed is the amount of NDIS funding spent on proving, re-proving and documenting support needs.

Based on what I have observed, both for myself and for others, I estimate that over 60% of NDIS funded therapy hours are spent not on improving quality of life or building capacity, but on justifying therapies, supports and assistive technology.

This raises a serious sustainability question: how much NDIS expenditure is not being spent on support or therapies, but rather on proving the need for support or therapies?

I also note that this increasing focus on evidence generation may be contributing to burnout across parts of the therapy workforce. Many clinicians entered their professions to support participant outcomes and quality of life, however increasing administrative demands may result in large amounts of time being spent on repetitive reporting and justification processes.

Leasing Presumptions May Create False Economies

The Bill appears to strengthen consideration of leasing equipment rather than buying, with a presumption that leasing may be better value unless evidence shows otherwise.

Leasing may be appropriate in some cases. However, broad presumptions can create false economies.

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Ownership may sometimes be cheaper long-term, more stable, simpler, more appropriate, less administratively burdensome, and better for participant independence.

If participants need to provide substantial evidence as to why buying is better than leasing, that evidence itself costs money. It may require OT assessments, quotes, reports, comparison documents, and administrative processing.

In some cases, the cost of providing substantial evidence that purchase is better value may exceed the savings the policy is trying to create.

I strongly hold however that leasing should be considered an option for participants where rapid deterioration or change may be present.

Evidence-Based Practice Should Not Override Individual Outcomes

The Bill appears to place stronger emphasis on research evidence and the CEO’s ability to decide whether a support is effective and beneficial. I support evidence-informed decision-making.

However, disability supports are often highly individual. A support may be very effective for one participant even if there is limited large-scale research evidence. A support may also be ineffective for an individual, even if it broadly is evidenced for a condition.

Funding therapies or supports that participants don’t want or need because it is evidenced based for their cohort, may lead to wasted expenditure.

Value for money is best achieved when what works is funded, whether the evidence comes through measurable individual outcomes and lived experience or research evidence.

Factors when considering a sustainable path moving forward

A) The Bill Risks Punishing Functional Gains

Stricter access, reassessment and functional capacity provisions may unintentionally punish functional gains.

The NDIS seeks to support capacity building, independence, participation, stability and quality of life. But if this bill passes, many participants may fear that if they improve, they will lose support.

This could create a perverse incentive. If a participant works extremely hard to increase independence, access the community or reduce therapy needs, they may fear falling below the threshold for the ongoing support they need.

Another important factor is that a person may appear improved because supports are working. If those supports are reduced or removed, the person may deteriorate again.

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The system may then spend the same money over and over rebuilding outcomes that would have been more cost effective to simply maintain. I have observed that supports are sometimes cut at the point they are working, often resulting in loss of functional gains.

A sustainable scheme should not repeatedly fund collapse and rebuilding. It should maintain stability, particularly given that maintaining stability may be cheaper, safer and more person centred.

Participants should not fear the outcomes the scheme was founded to create - equal participation in the workforce, and the community. Outcomes that may evaporate if those supports were not ongoing.

B) More Capacity Building Does Not Always Mean Better Outcomes

Capacity building saves money if and when the participant is able to build and sustain the skill.

Capacity building should be targeted to:

  • areas where the participant wants to build independence
  • areas where the participant is realistically able to build independence
  • areas where lack of independence is causing risk or harm

The toll capacity building takes, mentally and physically, should not be underestimated. For some participants, trying to build capacity in every possible area is not empowering. It is harmful. Funding capacity building indiscriminately may be less cost effective than funding quality of life, and capacity building where appropriate.

C) Workforce Skill Is One of the Most Overlooked Sustainability Issues in the NDIS

The scheme spends large sums on support work. However, the quality, training and disability-specific skill of support workers varies significantly.

An effective, highly trained, disability-informed support worker may achieve in two hours what an untrained worker may not achieve in twenty.

If support workers do not properly understand a participant’s disability, support hours may be poorly utilised despite substantial expenditure.

For example, many workers, including some charging under skill-building line items, may not fully understand how skill development occurs for different participants.

For some people, skill development may occur through:

  • repeated modelling,
  • reduced pressure,
  • structured routines,

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- gradual supported participation,
- standby assistance,
- and eventual independence where appropriate.

However, there can also be an assumption within disability systems that if a participant
cannot complete a task independently, the issue is necessarily a lack of skill requiring
further capacity building. This is not always the case.

For many people with intellectual or developmental disability, barriers may also involve:

- cognitive overload,
- difficulty sequencing multiple steps,
- impaired working memory,
- difficulty initiating tasks,
- difficulty adapting when things change,
- difficulty with transitions between tasks
- or inability to sustain the mental effort required to complete tasks consistently and
  safely.

In these situations, the issue may not simply be that the participant does not know how to
complete the task. The issue may also involve the ongoing cognitive demands required to
reliably carry the task out in day to day settings.

Therapists may make appropriate recommendations, but those recommendations are not
always implemented effectively in practice because support workers may lack sufficient
disability-specific training, practical skill, or understanding of how different disabilities
affect functioning.

The scheme may then repeatedly fund:

- therapy,
- reports,
- recommendations,
- support work,
- reassessments,
- and further intervention,

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without achieving sustained meaningful change for the participant.

Few reforms would likely represent greater value for money than investing in practical, disability-specific support worker training and workforce capability, so that they can help to implement therapist recommendations.

D) A Worker’s Administrative Capacity is not the same as Their Support Capability

I understand why some may prefer registered providers. Safeguards and accountability matter.

However, many people with disability appreciate independent support workers for good reasons.

Independent workers who can maintain a stable income often do so because they are highly valued by participants. They often are highly trained, experienced and good at capacity building.

It is important to note, sometimes the workers who are best on the ground are not the same people who are best at the paperwork.

And sometimes, some big providers who are good at the paperwork, may have care plans, but don’t follow them, instead providing low quality, ineffective supports.

If reforms create excessive administrative burden, the scheme may lose many excellent workers who are highly effective at improving independence but not resourced financially or administratively to manage complex compliance systems.

A worker’s ability to navigate paperwork is not the same as their ability to improve a participant’s capacity or quality of life.

For example, I work with a support worker who is highly trained. She has changed my life. One day, because of her, I hope to be independent in community access. She also is a sole trader, who has dyslexia.

I don’t want to risk having to stop my progress because of registration fees that exceed what a sole trader could do or complex administrative paperwork.

E) Innovation and Assistive Technology Are Major Untapped Sustainability Opportunities

I ask the Committee to consider how much some plans could reduce if the scheme invested in innovation, assistive technology, automation, and robotics.

Many participants, particularly those with high support needs, do not want people around them all the time. Constant human support can be intrusive, exhausting and socially draining.

Some participants would strongly prefer more privacy and independence.

The scheme could invest in technology, robotics, adaptive equipment, environmental controls, AI-assisted supports, automated cooking and cleaning technologies.

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This would not just be value for money, it could also increase dignity, privacy, autonomy and quality of life.

Even expensive technology may be cost-effective when compared with years or decades of human support.

A sustainable NDS should not only ask how to reduce supports. It should ask how to reduce reliance on supports through innovation and autonomy.

Innovation competitions with incentives could encourage the development of practical technologies, systems and support solutions that reduce long-term scheme costs while maintaining high-quality participant support.

F) Standardised Foundational Programs Could Save Money Without Removing Individual Support

There may be more cost effective ways to deliver some therapy-related supports.

Many participants with similar disabilities repeatedly need foundational education around common matters encountered by that group.

At present, the scheme may be repeatedly funding individual clinicians to explain the same foundational concepts to many participants.

For some participants, high-quality standardised therapy resources could help. This could include accessible therapy databases, evidence-informed programs, practical modules, videos, guided tools, plain language resources and disability-specific skill-building programs.

These should not replace individual therapy. But a hybrid model could work well for some participants: standardised foundational education, supplemented by individual therapy hours for participant-specific barriers, adaptations and implementation.

This could reduce repetitive expenditure while preserving individualisation.

Conclusion

I urge the Committee to consider whether the Bill, as drafted, risks increasing long-term costs by de-incentivising progress, increasing incidents and amplifying waste and deterioration through delayed assessment of changes.

I contend that there is a better approach.

A sustainable NDIS should be built on collaboration, responsiveness, innovation, workforce skill and meaningful outcomes.

Participants should not be afraid that improvement or reduced need in one area will cause them to lose supports they need.

Participants should not have to spend thousands of taxpayer dollars proving the need for supports that cost less than the evidence requested.

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