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Securing the NDIS for Future Generations Bill 2026

MND Australia Opening Statement: Senate Inquiry

Published: 31 July 2026

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Chairs and Senators, thank you for the opportunity to contribute to this important inquiry.

MND Australia supports the Government’s objective of ensuring the NDIS remains sustainable for future generations. We support stronger safeguards against fraud, greater provider accountability, and measures that improves the Scheme’s integrity and efficiency.

Our concern is to ensure that savings don’t come at the cost of delivering critical care.

We are asking the Committee to ensure that in pursuing these important reforms, the legislation does not unintentionally disadvantage Australians living with rapidly progressive neurological disease or weaken one of the NDIS’ most successful recent reforms: the MND Priority Pathway.

Motor neurone disease is an insidious disease that progressively removes a person’s ability to walk, use their hands, sit up, eat and eventually to breathe. There is no cure and the average life span from diagnosis is a scant 27 months, and for many it is far shorter.

Unlike many disabilities, the support needs of someone living with MND can change dramatically within weeks, sometimes even days.

That reality is why the Priority Pathway matters.

Since its introduction in 2024, it has transformed the experience of Australians under the age of 65 who are diagnosed with MND. Instead of navigating lengthy delays, people are connected with assessors who understand the disease, receive appropriately funded plans quickly, and can access reassessments as their condition changes.

For a small group of Australians facing one of the most devastating diagnoses imaginable, it has provided certainty, dignity and timely support at the moment they need it most.

Importantly, we are talking about a very small cohort. According to unpublished NDIA data, fewer than 91 people living with MND were accepted through the priority pathway during its first fifteen months. Yet for those individuals and their families, the impact has been profound.

Before the pathway existed, too many people died before they could access their plan or received support that no longer reflected their needs by the time it arrived.

Our message today is simple: the reforms should preserve what is already working well.

Our submission covers key areas where we believe the Bill could unintentionally undermine outcomes for people living with MND.

First, assessment must recognise disease trajectory, not simply current function.

We understand the intention behind introducing a more consistent functional capacity assessment. For many disabilities, assessing someone’s function at a point in time may be appropriate. For MND, it is not.

A person who is independently mobile today may require a wheelchair within weeks. Someone who can still communicate verbally may lose that ability before their plan is finalised.

The proposal to measure need at a fixed point in time is deeply flawed and risks producing plans that are already out of date by the time they are approved.

Closely linked to this is the proposed move away from diagnosis as an accepted basis for establishing eligibility. We understand the rationale for creating a more consistent assessment framework. However, there are some conditions for which the diagnosis itself provides the evidence required.

Motor neurone disease is one of them. MND is permanent and progressive. There is no remission, only management of symptoms. Requiring people living with MND to demonstrate permanence or prove they have exhausted treatment options adds administrative burden without improving outcomes or decision-making.

For MND, a specialist diagnosis should remain sufficient evidence of permanence and exhausted treatment options.

Second, the Scheme must remain agile enough to respond as the disease progresses.

Rapid reassessments for people living with MND means greater efficiency and cost-savings by providing the services at the point in time when they are needed.

The proposed changes limiting who can request reassessments, together with extending approval timeframes from 21 days to 90 days, are particularly concerning.

People with MND cannot wait three months for a decision after their needs have significantly changed. Every reassessment reflects disease progression.

It is unclear who a ‘plan nominee’ can be, but we strongly advocate for plan managers and/or support coordinators to continue to have the ability to request a reassessment. This is a service provided by our state associations, and it removes an enormous administrative burden from people living with MND and their families during an incredibly difficult time. NDIA concerns about unauthorised assessment requests can be mitigated by requiring the participant to approve such requests.

Similarly, we are concerned by provisions allowing plans to be suspended if participants cannot be contacted.

As MND progresses, people lose speech, hand function and eventually their ability to communicate independently. Before suspending a participant’s plan, the legislation should require reasonable attempts to contact a participant’s broader support network, including plan nominees, support coordinators and plan managers.

Third, sustainability must not come at the expense of participant care.

We support every effort to hold providers to account, to stop fraudulent and unethical activity, and to improve service delivery efficiencies.

However, we are concerned by provisions that enable funding for categories of supports to be reduced in the interests of Scheme sustainability.

Financial sustainability is essential. But participant need must remain the primary consideration.

For people living with MND, support needs do not plateau. They increase rapidly as the disease progresses. What begins as occasional assistance quickly becomes daily personal care, specialised equipment, respiratory support and, for many families, intensive twenty-four-hour clinical care.

We are also concerned that the proposed approach appears to assume that informal care arrangements remain constant over time.

As MND progresses, the burden on carers increases exponentially. Without appropriate funded supports, carers are at significant risk of physical injury, financial hardship and burnout.

Finally, technology should support clinical judgement – not replace it.

We recognise the need to improve administrative efficiency and the potential benefits of leveraging technology.

However, we are concerned about plans to introduce automated decision-making into the assessment and planning processes. The experience of automated assessment within aged care has demonstrated the harm that can occur when technology cannot adequately account for complex clinical circumstances.

We are seeking clarity, absent in the exposure draft for the proposed legislative changes, about the role of automated decision-making in assessment and planning processes.

In line with the recommendations of the Office of the Australian Information Commissioner, if automated decision-making is to play any role in assessment or planning, there must be complete transparency about where it is used, strong human oversight, clear review mechanisms and the ability for expert clinical judgement to override automated outcomes.

Chairs and Senators, I would like to conclude by returning to the MND Priority Pathway.

We greatly appreciate the Government’s commitment to retaining this pathway. I want to clearly state on behalf of the MND community that the priority pathway is working incredibly well for them. However, we seek assurance that the elements which have made it so successful will remain unchanged.

Specifically, we ask that:

• Specialist MND assessors continue to undertake assessments; 
• Funding continues to be approved within 30 days; 
• Reassessments remain available whenever clinically required; 
• Reassessment requests continue to be considered within 21 days for this small, rapidly progressive cohort; and  
• The ongoing collaboration between the NDIA and the MND State Associations continues.  

The reforms before you are intended to secure the NDIS for future generations. We support that objective.

But sustainability and responsiveness are not competing goals.

The MND Priority Pathway has already demonstrated that the Scheme can be financially responsible while also delivering timely, clinically informed and compassionate support for a very small number of Australians facing one of the most insidious diseases known.  

We ask the Committee to preserve what is working, recognise the unique realities of rapidly progressive neurological disease, and ensure these reforms continue to look after Australians with a disability in a way that promotes dignity and person-centred care.

Thank you. We look forward to your questions.

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Summary of key areas of concerns mentioned in the opening statement:

• Assessing functional capacity, which fails to account for disease progression;
• Reducing access to unplanned reassessments, which reduces point-in-time responsiveness to need;
• Reducing funding amounts for core supports, capacity building, capital investments and recurring costs, which may compromise participant health;
• Suspending plans because a participant is non-responsive, which may be due to their condition
• Providing evidence of condition permanence and exhausting treatment options, which are irrelevant to people diagnosed with MND; and
• Introducing automated decision-making, which reduces the role of experts in the planning and assessment process

And concerns specific to the priority access pathway:  

That the MND priority pathway continue to provide assessors with expert knowledge of MND, its expected trajectory, and an understanding of clinical and support needs.

That funding continue to be approved and released within under 30 days.

That reassessments continue to be made available as needed to this small cohort.

That reassessments continue to be made within a 21-day window.

That monthly coordination meetings continue between the manager of the priority pathway and the State Associations.

Opening Statement delivered by Clare Sullivan, MND Australia CEO, at the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026: Senate Inquiry, 31 July 2026