National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2485
Submission to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (Cth)
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2485
Executive Summary
Thank you for providing me with the opportunity to make a submission in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (Cth) (‘the Bill’).
While this world-leading program has provided many people with disabilities access to life- changing support, I can see where the system has grown larger than projected, and larger than what can be supported in the long-term. I welcome any changes to the system which are aimed to provide better services and support to people with disabilities while ensuring long-term sustainability.
Even from my own experiences, a disability is incredibly difficult to manage. Without appropriate support, people with disabilities can find themselves further marginalised, financially vulnerable and socially isolated. In saying this, I am going to address the following aspects in the Bill:
- The definition of functional capacity
- The focus on financial sustainability
A little bit about me; I have a diagnosis of multiple sclerosis and I am not currently an NDIS participant. I would like to note that my submissions are largely based on the impact of people who have been diagnosed with multiple sclerosis, my own experiences associated with my disability and my suggestions as a person with a disability.
- Functional capacity
The Bill inserts section 9B which outlines the definition of functional capacity. The relevant section is outlined below:
- A person’s functional capacity, in relation to an activity, is the person’s ability to undertake the activity:
- without assistance from other people, assistive technology or modifications; and
- in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances
There are two issues that I want to discuss as part of the functional capacity definition. The first is that the Bill does not account for fluctuating or episodic disabilities. The second is that the Bill fundamentally excludes environmental circumstances.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2485
1.1 The need to consider fluctuating and episodic disabilities
The main issue with the definition is that it does not account for disabilities that are fluctuating or episodic. The disability requirements under s 24(2) and (3) already allow for fluctuating or episodic conditions to be considered when determining permanency, however it should also be linked to functional capacity.
I am proposing that section 9B include the following provision (in bold):
- A person’s functional capacity, in relation to an activity, is the person’s ability to undertake the activity:
- without assistance from other people, assistive technology or modifications; and
- in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances
- despite the episodic or fluctuating nature of any impairments.
This would, hopefully, allow for functional capacity to be considered more holistically or on a “whole-of-person level”.1 It would also, hopefully, avoid support being discounted because of the “good days” or needing participants to only present their “bad days” to receive the support they need.
1.2 The need to reasonably consider environmental circumstances
Another issue with the definition is that the Bill excludes environmental circumstances, as far as possible, when considering person’s functional capacity.
I do not really see a way to exclude environmental factors when considering someone’s day-to-day life. Unless a person were to create an ideal environment and never leave it, it is difficult to see how a person’s environment cannot be considered in connection with their functional capacity. This is especially the case when you consider a person must interact with their environment on a daily basis to meaningfully participate in society (e.g. work, school and social activities).
There are also many disabilities that are functionally worse depending on their environment. For example, people with autism may experience heightened sensory symptoms based on their environment.
1 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 6.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2485
In relation to multiple sclerosis, environmental circumstances can certainly affect a person’s functional capacity at any given time. It is estimated that 60-80% of people with multiple sclerosis experience a temporary worsening of symptoms when exposed to increased temperatures.2 This is
known as Uthoff’s phenomenon3 and research suggests that a temperature increase as small as 0.2°C to 0.5°C4 can worsen symptoms such as fatigue, spasticity and vision problems.5 The exposure to increased heat can effectively cause a “pseudo-exacerbation” or a “pseudo-relapse”6 and may only become more relevant as we see the increased effects of climate change, including heatwaves.7
I am hoping that the “as far as possible” is more reasonable than I am envisioning. However, to avoid any doubt, I am proposing that section 9B should exclude environmental circumstances on an “as reasonably as possible” basis.
This will, hopefully, account for more equitable decisions rather than decisions that are legislatively designed to minimise the consideration of environmental circumstances as much as possible. I note that recommendation 3 from the Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS (‘NDIS review’) states that “any assessment considered should take into account that disability can fluctuate over time, and based on the environments in which a person is in”.8
Considering the discussion points above, I am proposing that section 9B is to be amended as follows (in bold):
-
A person’s functional capacity, in relation to an activity, is the person’s ability to undertake the activity:
-
without assistance from other people, assistive technology or modifications; and
-
in a context that excludes, as reasonably as possible, the impact of the person’s environmental and personal circumstances; and
-
despite the episodic or fluctuating nature of any impairments.
-
Financial sustainability
There seems to be a focus on financial sustainability of the NDIS in the Bill. While I understand the need to make sure that the NDIS can be funded adequately for future generations, the changes in the legislation that are focused on financial sustainability are quite apparent.
2 https://pubmed.ncbi.nlm.nih.gov/34199394/ . 3 https://pubmed.ncbi.nlm.nih.gov/30459034/ ; https://www.ncbi.nlm.nih.gov/sites/books/NBK470244/. 4 https://www.ncbi.nlm.nih.gov/sites/books/NBK470244/ . 5 https://pmc.ncbi.nlm.nih.gov/articles/PMC6205043/ . 6 Ibid. 7 https://www.sciencedirect.com/science/article/pii/S0022510X25001431 . 8 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 91.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2485
Section 3(1)(d) is proposed to include financial sustainability as one of the objects of the Act. I have provided a table below to outline the difference (bold for emphasis):
Table 1: Differences in section 3(1)(d)
The current section The proposed section
“provide reasonable and necessary “provide NDIS supports for participants in the National supports, including early intervention Disability Insurance Scheme that are reasonable and supports, for participants in the National necessary, so far as is consistent with the financial Disability Insurance Scheme; and” sustainability of the scheme; and”
The Minister can also reduce funding (lower than 100%) under the proposed section 34A. This determination remains in effect even if it means the funding is less than the total cost of a reasonable and necessary support under subsection (5). Section 17B proposes that financial
sustainability is a consideration relevant to the performance of functions and exercising of power.
However, financial sustainability is only one aspect of overall sustainability. The review of the NDIS noted that “sustainability is more than costs, it also includes the benefits of the NDIS”.9
The NDIS review also noted that “[A] person-centred, fairer NDIS, embedded in a balanced ecosystem of support that is easy to navigate and delivers high quality supports will result in a sustainable scheme”10 and “[P]eople with disability must be at the centre of the NDIS…the NDIS cannot achieve sustainability without improving outcomes for people with disability”.11
I am therefore proposing that references to financial sustainability, most notably section 3(1)(d), be simply broadened to “sustainability” to allow for a broader interpretation. This will also, hopefully, allow for object of the Act to be more in line with the findings in the NDIS review and avoid other aspects of sustainability (including support outcomes) becoming secondary to fiscal outcomes.
- Re-balancing of the system
I would also like to briefly discuss that there needs to be, more broadly, a re-balancing of the system.
The NDIS review notes: “[A]ll governments are accountable for the sustainability of the disability ecosystem. It is impossible for the NDIS to be sustainable without a commitment by governments to improve foundational supports outside the NDIS and make mainstream services more
9 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 91. 10 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 51. 11 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 18.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2485
accessible and inclusive. This is the most important way to improve scheme sustainability and reduce pressure for NDIS support”.12
This may be for future consideration and outside the terms of this review, however the federal government needs to work with states to, at least, broaden the eligibility requirements for support to ease some pressure.
For example, the Queensland Community Support Scheme makes access eligible only if you are not eligible for NDIS13 and eligibility for the Medical Aids Subsidy Scheme is (broadly) for people who can present an eligibility card (e.g. concession card).14 This effectively refers many people to the NDIS in the first instance.
A potential solution is instead of being only able to access QCSS if you are not eligible for the
NDIS, it should simply be if you are not currently a participant of the NDIS. This would avoid people receiving double support while easing pressure on the NDIS as the first point of support for many people.
Conclusion
The NDIS review made 26 recommendations to support the future sustainability of the NDIS. It is clear from this review that the future agenda for the NDIS is to secure the sustainability of a system that has become the “oasis in the desert”.15
I fundamentally welcome the need to create a financially viable system as someone who may need to access it in the future. However, there is likely a line between reducing spending and providing adequate support and I am hoping that this Bill is not swinging too far in the wrong direction.
I would like to note that while I am also speaking from my own experiences, I am sure that my submissions will also resonate with people with other disabilities that are fluctuating, episodic and impacted by environmental circumstances.
Thank you, again, for providing me with the opportunity to make this submission. I look forward to working together to enhance the sustainability of the NDIS to support people with disabilities, now and in the future.
12 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 51. 13 https://www.qld.gov.au/community/getting-support-health-social-issue/community-home-care-services/queensland-community-support-scheme . 14 https://www.health.qld.gov.au/mass/subsidy-schemes . 15 The Independent Review of the National Disability Insurance Scheme — Working together to deliver the NDIS, page 25.