Submission to the Senate Community Affairs Legislation Committee’s Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 | External submission

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

Submission to the Senate Community Affairs Legislation Committee’s Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Young People In Nursing Homes National Alliance May 2026

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

Recommendations

Restrictions on plan reassessments

Amend the Bill to either:

include an explicit carve-out for participants with neurodegenerative and progressive conditions that exempts this cohort from the proposed restrictions on unscheduled plan reassessments (s48A), or
remove the proposed s48A provisions that change the access to reassessments, including the time allowed for the CEO to undertake a reassessment, from the Bill until the Scheme Actuary produces and publishes a comprehensive cost-benefit analysis and lifetime liability impact assessment (including relevant assumptions and impact on participants with progressive conditions).

The Commonwealth Government to investigate and develop a separate, fit-for- purpose planning mechanism for participants with progressive conditions, consistent with the recommendations of the Time Won’t Wait report, that provides for iterative, responsive planning matched to the pace of functional change experienced by participants with these life limiting, progressive conditions.

Ministerial power to reduce funding for categories of supports

Remove the provision granting the Minister the power to discount funding for categories of NDIS supports from the Bill.
The Commonwealth Government to pursue pricing reforms, increased market transparency, investment in inclusive community infrastructure, and resources to assist with navigation and self-advocacy. Any such reforms must be developed with advice from the disability community and people with lived experience.

Limiting eligibility for people accessing lifetime support schemes

The proposed eligibility limitations for people accessing lifetime support schemes or with compensation should be removed from the Bill.
The Commonwealth Government should lead the urgent implementation of the National Injury Insurance Scheme (NIIS).

Support needs assessment, participant needs and plan budgets

The Scheme Actuary should be required to undertake a comprehensive analysis of Scheme experience with participants with neurodegenerative and progressive conditions that encompasses costs, planning outcomes, ART appeal rates and results, and patterns of changing needs over time.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

The NDIA to use that analysis to develop an assessment, planning and funding regime that is demonstrably fit for purpose for participants living with life limiting, progressive conditions.

Narrowing of fundable support boundaries

The amendments to s34(1) and s32L of the NDIS Act should be removed from the Bill. In addition, the new s17B and s48A(2)(b)(i) should be amended to remove the restrictive insertion of the word “directly”.
To avoid doubt:

the original wording of section 34(1)(aa) and s32L(6), as enacted in 2024
the Note (b) under section 34(1) and under s32L(6) should be retained to preserve the clear legislative guidance that participant support needs must be assessed holistically, acknowledging the real-world impact of environmental factors and co-morbidities.

The Scheme Actuary should be required to produce and publish a comprehensive cost-benefit analysis and lifetime liability impact assessment regarding any proposed narrowing of the fundable support boundaries before the Bill proceeds further.

Legislative Complexity

Any amendments to s34(1) and s32L(6) of the NDIS Act to change the scope of what can be funded in a participant plan should require the Parliament to be satisfied that they amendments will not lead to an increase in (a) Scheme costs or (b) cost shift to the public health system.
The amendments to allow broad Ministerial Rule-making powers should be modified to require any changes to the assessment parameters regarding participant funding to be enacted in the NDIS Act rather than the Rules.
The amendments to allow specific Ministerial Rule-making powers under a new s34A to the NDIS Act should be modified to require that in exercising any power to institute a discount to the funding of a category of supports, the Minister needs to:

consult with Scheme stakeholders on any proposed discount, and
be satisfied that any discount will not introduce risk to the safety of participants in general or for any specific group of participants.

Workforce

The Committee should require the Commissioner of the NDIS Quality and Safeguards Commission to provide advice on the expected workforce impacts of the Bill. Specifically, the Commissioner should be required to explain:

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

the expected impacts of the proposed changes on the ability of providers to ensure that they can adequately train and develop their disability support worker staff to safely meet the needs of participants with the new levels of funding expected under the amended NDIS Act, with specific emphasis on those with complex progressive conditions
how the Commission will proactively monitor, and provide real-time feedback to the Government, to ensure that legislative adjustments do not create unintended risks to safety, create service gaps, remove or compromise safeguards, or lead to sudden or mass depletion in the workforce (in general, in geographical locations, and for particular participant cohorts)
how the Commission intends to improve the access to fit-for-purpose training and education for providers, including entry level staff, and ensure that any expectations on providers to train and credential their staff can be met at the price levels set by the NDIA and within the funding levels approved to meet the needs of individual participants, and specifically participants with complex and progressive conditions.
how the Commission will proactively monitor, and provide real-time feedback to the Government, to ensure that legislative adjustments do not create unintended risks to safety, create service gaps, remove or compromise safeguards, or lead to sudden or mass depletion in the workforce (in general, in market segments, and for particular participant cohorts)
the Commission’s plan to address the potential for vicarious trauma for support workers if the amendments result in an expectation that they take on more responsibility without the benefit of additional paid training and skills development, or to provide supports that are unsafe for the participant or themselves.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

Executive Summary

The Young People In Nursing Homes National Alliance (the Alliance) welcomes the

opportunity to make a submission to the Senate Community Affairs Legislation Committee’s inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for

Future Generations) Bill 2026 (the Bill).

The Alliance recognises the Government’s obligation to ensure the NDIS remains on a sustainable fiscal footing. We support measures that address genuine integrity risks and

ensures the Scheme operates equitably and efficiently for the long term.

We believe, however, that several provisions in the Bill will cause direct and foreseeable

harm to some participants. A specific group who will be at risk from these foreseeable harms are those with neurodegenerative and progressive conditions - a group that is not

responsible for unsustainable Scheme growth and for whom administrative controls designed for the broader participant population are structurally unsuitable. Rather than

producing savings, these measures will - at best - simply shift costs to the health system

while compounding harm for participants with increasing levels of impairment.

While we have not traversed the full gamut of the Bill, the Alliance makes comment and

recommendations in the following areas:

The proposed reduction in access to, and frequency of, plan reassessments
The proposed Ministerial power to reduce funding for categories of supports
The proposed limitation on eligibility for people accessing other lifetime support

schemes or who have received either lump sum or continuing compensation

The proposed use of I-CAN assessments in the process of determining plan budgets
The proposed narrowing of fundable support boundaries
The increased legal complexity introduced by these amendments
The impacts on NDIS workforce from the amendment

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

About the Alliance

The Alliance is a national peak organisation that has advocated since 2002 for younger

Australians with health and disability support needs, including those living with young onset dementia (YOD) and other neurodegenerative and progressive conditions.

The Alliance works directly with people with lived experience, families, carers, service

providers and government agencies across the disability, health, housing and aged care sectors.

Since its inception, the Alliance has provided a range of individual and systemic services to younger Australians living with, or at risk of, placement in residential aged care (RAC). We

support people with disability and health issues arising from physical, neurological, cognitive and psychosocial impairments. A growing number are individuals living with young onset

dementia and other progressive, life-limiting conditions.

Resolving their funding, service access and service quality issues requires negotiation with

programs provided by different government agencies and service sectors to create the

integrated service responses they need. To do this, we work with the disability services system and the NDIS, as well as health, mental health, aged care, housing and justice

programs.

We have also worked extensively at the interfaces of the NDIS with health, rehabilitation

and aged care services and have strong working relationships with state health programs and services.

The Alliance has drawn on its extensive engagement with stakeholders to deliver the systemic advocacy needed to resolve the Younger People In Residential Aged Care (YPIRAC)

issue and develop a system of care for people with young onset dementia. This work

involved extensive consultation, research, policy analysis and commissioned projects. The

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

outcome was the Joint Solutions Young Onset Dementia Project1 and its final report Time Won’t Wait2, which sets out 90 recommendations.

We raise the following concerns about the new NDIS Bill in its current form and would

welcome the opportunity to discuss these further with members of the Committee.

Restrictions on plan reassessments

The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 significantly restricts the access of participants to unscheduled plan

reassessments, limiting these to circumstances involving a ‘significant and ongoing change in functional capacity’ and imposing a 90-day waiting period between requests.

Such a proposition would create foreseeable harm to NDIS participants living with a life- limiting neurodegenerative conditions. Increasing support needs between plan approval

cycles do not represent a planning anomaly - they are an inevitable consequence of these conditions. As such, this measure is directly contrary to the inherent needs of people in this

group and will not deliver the savings its proponents expect. These progressive conditions

include young onset dementia, motor neurone disease (MND), Huntington’s disease, Parkinson’s disease and multiple sclerosis amongst others.

The trajectory of neurodegenerative conditions is variable and often rapid. Changes are often unpredictable in timing and so cannot be aligned with fixed administrative timetables.

A person living with frontotemporal dementia (FTD – a type of young onset dementia) may, for example, lose significant functional capacity and see their support needs escalate in a

matter of days. There is no standardised NDIS planning cycle that could be designed to anticipate these changes.

1 Young People in Nursing Homes National Alliance. (2024). The Joint Solutions Young Onset Dementia Project Summary of Project Findings – Young People In Nursing Homes. www.ypinh.org.au. https://ypinh.org.au/joint-solutions-project/ 2 Blackwood, A., Davison, S., & Morkham, B. (2025). Time won’t wait…: The Final Report of the Joint Solutions Young Onset Dementia Project Young People In Nursing Homes National Alliance. Young People in Nursing Homes National Alliance, ypinh.org.au. https://ypinh.org.au/wp-content/uploads/2025/08/The-Joint- Solutions-Young-Onset-Dementia-Project-Final-Report.pdf

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

The impact of this trajectory is documented in detail in the Time Won’t Wait report and includes specific recommendations as to how the NDIS should respond to participants with neurodegenerative disability:

In relation to progressive conditions (including young onset dementia), the Minister for the NDIS and CEO NDIA to consider:

a. how to ensure that participants with progressive conditions have a streamlined pathway for access, assessment, planning by, and communication with, the NDIA

b. alternative funding approaches to support people with progressive conditions

c. funding decisions take into account the future needs of individuals with progressive conditions over the period of their plan to ensure that their support needs are met and they do not exhaust their NDIS funding before reassessment

d. how participant plans can provide for maximum flexibility to ensure that participants with progressive conditions can use their funding to meet their sometimes unstable support needs, especially flexibility in relation to funding periods and stated supports

e. that risks to participants with progressive conditions and their families resulting from NDIS funding decisions are managed quickly and are not further exacerbated by delays in NDIA planning or communication responses

f. how to enhance access to NDIS participation and supports including by ensuring timely service delivery, recognising the evolving needs of individuals with a progressive condition, and offering socially engaging activities. The recent establishment of a progressive disability pathway within the NDIS for people with motor-neurone disease (MND) is a good model and should be expanded to include people with young onset dementia and other progressive conditions

In relation to progressive conditions, CEO NDIA to consider:

a. publishing a guide on required planning information for progressive conditions

b. establishment of a specialist branch to manage the engagement and relationship with participants with progressive conditions and their families.

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1.1. Increases in intra-plan funding conflated with systemic misuse of funding

The current narrative about the drastic need for NDIS reform contains a persistent

conflation of intra-plan funding increases that reflect:

• inefficient planning processes or misuse of funding, and • genuine progression of neurodegenerative disability conditions.

These are quite different things. As a Scheme based on a principle of individualised funding,

the NDIS must have the capacity to respond as needed to the assessable and foreseeable needs of individual participants.

In its advocacy work with people living with young onset dementia, the Alliance has consistently observed that intra-plan increases for this cohort reflect the progressive nature

of the disability.

Far from being an unexpected development, the assumption that people with progressive

conditions will have increasing support needs should a mandatory principle of the planning process deployed by the NDIA for this group.

Far from being considered a ‘red flag’ for the NDIA to further restrict funding, increased need for funding during a plan for people with progressive conditions should be accepted as

an inevitable consequence of the NDIA’s current planning process.

The Commonwealth Government should publicly recognise this and direct the NDIA to make appropriate actuarial provision for these foreseeable support needs and the funding needed

to meet them in a timely manner.

Restricting access to reassessment for this group will:

• not eliminate the genuine need of the individual participants • delay the appropriate Scheme response to that need • introduce foreseeable harm for participants, families and providers, and • result in a direct shift of costs to the health system as people will be forced into

hospital when their NDIS plan funding is exhausted.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

The Minister has observed that one in five NDIS plans are subject to unscheduled

reassessment and that these produce an average 20% funding increase.

The Alliance suggests that in relation to ‘unscheduled’ reassessments relating to people with

progressive needs arising from neurodegenerative conditions:

a significant proportion - perhaps most - of those that result in increased funding

reflect either: o successful challenges to plan decisions that were inadequate from the outset, or o appropriate responses to escalating needs.

In addition, a significant percentage of reassessments that do not increase funding are

subsequently changed on review to increase funding and reflect successful challenges to

plan decisions that were inadequate from the outset.

The Alliance recommends that the Committee seeks additional information from the NDIS

Scheme Actuary on the exact percentages before considering the provision in the Bill that would arbitrarily restrict reassessment rights for people with progressive conditions.

Our experience from assisting people at the Administrative Review Tribunal (ART), tells us that there is no economy in forcing delays or underfunding participants with young onset

dementia. Participants waiting on decisions of the Tribunal frequently face exhaustion of their plan funding, and it is not uncommon for participants to be admitted to hospital

pending a resolution of their case. Many of these participants eventually have their Plan

funding substantially increased on the same evidence previously considered by the NDIA delegates at reassessment and/or review.

Withholding funding, or applying planning policies not designed for participants with progressive conditions, does not improve sustainability of the Scheme. Rather than

improving sustainability, restricting access to plan reassessment is likely to drive more participants in this group to seek merits or judicial review, further increasing risk and costs.

A better approach to participant planning would be for the NDIS Act to prioritise the alignment of approved funding with evidence of need, participant goals and aspirations, and

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

the objectives of the NDIS Act. This should then be monitored to ensure that it delivers

good outcomes for participants.

Recommendations: 17. Amend the Bill to either:

include an explicit carve-out for participants with neurodegenerative and progressive conditions that exempts this cohort from the proposed restrictions on unscheduled plan reassessments (s48A), or
remove the proposed s48A provisions that change the access to reassessments, including the time allowed for the CEO to undertake a reassessment, from the Bill until the Scheme Actuary produces and publishes a comprehensive cost-benefit analysis and lifetime liability impact assessment (including relevant assumptions and impact on participants with progressive conditions).

The Commonwealth Government to investigate and develop a separate, fit-for- purpose planning mechanism for participants with progressive conditions, consistent with the recommendations of the Time Won’t Wait report, that provides for iterative, responsive planning matched to the pace of functional change experienced by participants with these life limiting, progressive conditions.
Ministerial power to reduce funding for categories of supports

The Bill provides new powers (s34A) to the Minister to reduce the funding component amount for any specified group of supports by a percentage of the total (that is, less than

the price prescribed in the NDIS Pricing Arrangements and Price Limits) in order to support Scheme sustainability, even if that means the funding approved is less than the actual cost

to the participant. These reductions could be applied progressively as plans are reviewed or reassessed.

That is, in providing the Minister with power to reduce participant funding for required NDIS

supports by an arbitrary percentage, the Scheme shifts from providing for the cost of the reasonable and necessary supports for a participant to one potentially requiring a co-

payment from participants in order to pay for what the CEO of the NDIA has already determined to be the reasonable and necessary supports required to meet their support

needs.

This raises a question as to whether this provision would introduce prohibited indirect

discrimination under s6 of the Disability Discrimination Act 1992 of people with disabilities.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

That is, the proposed amendment:

by effectively requiring a co-payment in order to purchase required NDIS supports, appears to authorise the Minister to impose a requirement that treats people with

certain disabilities (those which prevent them from working and earning money and being able to afford the co-payment) less favourably than the Minister treats others

without these kinds of disabilities in circumstances that are not materially different. If so, this would potentially offend against s6(1) of the Disability Discrimination Act,

and

by not providing any reasonable adjustments (for example, a test to exempt or

reduce the co-payment requirement for those who could not afford it), the proposed

provision appears to introduce further disadvantage to people with these kinds of disabilities. If so, this would potentially offend against s6(2) of the Disability

Discrimination Act.

The Alliance is deeply concerned about this provision on both structural and practical

grounds.

Structurally, the power to reduce funding for classes of supports for all participants is

fundamentally at odds with the original legislative design of the NDIS as an individualised scheme. The Scheme was built on the principle that what is ‘reasonable and necessary’ is

determined by reference to the individual’s needs, goals and circumstances, and not by

their wealth or income.

Rather than introducing a refinement of the NDIS, this ‘god’ power is a clear departure from

the Scheme’s foundational operating principle.

In his Press Club address on 22 April 2026,3 Minister Mark Butler specifically referred to

resetting “the total cost of social and community participation back to where it was last year

3 Department of Health, Disability and Ageing (DoDHA). (2026, April 22). Minister Butler speech at the National Press Club – 22 April 2026. Australian Government Department of Health, Disability and Ageing. https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/minister-butler-speech-at-the- national-press-club-22-april-2026?language=en

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

and prevent any further runaway growth.” The amendment appears to be the specific

means by which the Minister intends to ‘reset’ the cost.

The Minister provided two examples of poor outcomes - “participants falling out of their

wheelchair while a support worker is scrolling on their phone” and programs run by volunteers “overwhelmed by NDIS providers who drop off participants without notice”.

Rather than address poor practice or worker training, the Bill will permit the Minister to cut an arbitrary swathe through supports to discount the funding that will be provided.

No evidence has been provided that such a cut would stop poor practice or improve participant outcomes. No modelling has been provided that discounting any specific

category of supports will reduce overall plan funding either in the short or longer term.

For people with young onset dementia, there is robust evidence that social engagement, continuing with paid or other work, and activities in the local community, are both

preventative for symptom onset, and effective as interventions to slow symptoms such as cognitive decline and common comorbidities such as anxiety and depression.

Social isolation, unemployment and lack of cognitive stimulation are, on the other hand, well established risks for the progression of young onset dementia symptoms.

Community participation also provides critical respite for families and care partners who provide ‘informal’ support. Without respite, the pressure on families caring for someone

with a progressive neurological condition inevitably increases. The options are often for:

• a family member to give up work to increase hours of informal support. However,

one of the Scheme’s founding principles was that the NDIS would ensure that family members did not have to withdraw from economic and social activity to care for

loved ones who are severely disabled, or

• a spouse or other family member to withdraw from caring – this would create a

crisis which would then require the Scheme to fund supported living for the individual, a much more expensive form of care.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

It is our view that discounting funding for any category of support offends against the

principle that the Scheme should fund the reasonable and necessary supports that people with disability need to live dignified lives. Specifically, discounting funding for social and

community participation for all participants, without reference to individual need or clinical context, will accelerate the decline of participants with progressive conditions and intensify

the impact on families who are already providing substantial informal care.

Rather than introduce an untested and high risk strategy of discounting, the Alliance

recommends a different approach – pricing reform, greater transparency in markets, investment in genuinely inclusive community infrastructure to build sustainability in the

Scheme, and an renewed focus on resources that assist participants and their families to

navigate an increasingly complex environment.

The Alliance is ready to work with Government to develop practical solutions to address

these challenges.

Recommendations:

Remove the provision granting the Minister the power to discount funding for categories of NDIS supports from the Bill.
The Commonwealth Government to pursue pricing reforms, increased market transparency, investment in inclusive community infrastructure, and resources to assist with navigation and self-advocacy. Any such reforms must be developed with advice from the disability community and people with lived experience.
Limiting eligibility for people accessing lifetime support schemes

The Bill proposes to limit or preclude NDIS access for people eligible for other lifetime

support schemes (such as motor vehicle injury or workers compensation schemes). The stated policy objective is to address duplication and improve NDIS financial sustainability.

The Alliance does not accept that this measure will achieve either objective.

Participants who access both the NDIS and a state – or territory – based lifetime support

scheme overwhelmingly do so because the two schemes fund different things.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

Lifetime schemes fund care and supports related to the particular injury or event that

generated liability. Most participants in these compensation schemes access the NDIS for services that the compensation scheme does not provide, such as Specialist Disability

Accommodation (SDA); or for support for impairments unrelated to their eligibility for these other schemes.

Housing services – and specifically specialist disability accommodation – are not benefits available to most claimants under these other schemes. There is therefore no duplication in

these participants accessing SDA through the NDIS. Excluding them from the NDIS removes access to specialist disability housing supports for which no reasonable alternative exists

elsewhere in the community.

The NDIS Act already contains comprehensive compensation recovery provisions that allow compensation amounts to reduce NDIS contributions in cases of dual eligibility.

These provisions operate on an individual, case-by-case basis and are designed precisely to resolve any genuine duplication of liability. They are rigorously utilised and no credible case

has been put that the NDIS Act needs blanket exclusions to achieve the same outcomes. Such exclusions will simply deny access to legitimate supports for some Australians with

disability, and place an unreasonable expectation that the lifetime support schemes will upgrade their benefits. To date there has been no modelling of the likely effects of such a

change to the NDIS Act. For example, there has been no guidance or modelling released

about:

• the likely effect on workers compensation or motor vehicle personal injury

insurance premiums

• the risk of governments changing legislation relating to those other Schemes to

exclude individuals from compensation if they would otherwise be eligible for the

NDIS, or

• the impact on the public health system if those who cannot access specialist

disability accommodation under the NDIS or other schemes are forced to live in

hospital.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

The Alliance would also draw the Committee’s attention to the supply-side implications of

this proposal. The SDA market is currently experiencing significant oversupply, with providers who have invested in specialist housing stock facing viability pressures due to

lower-than-projected demand in a range of locations. Removing this cohort of participants from Scheme eligibility will have a direct impact by reducing demand in an already

oversupplied SDA market.

This amendment may result in a weakening of the SDA marketplace and a consequent

increase in demand for personal care services where suitable SDA cannot be sourced.

3.1. Complete the National Injury Insurance Scheme (NIIS)

The Alliance recommends a different approach. In order to improve the sustainability of the NDIS, the Commonwealth Government should work with state and territory jurisdictions,

and relevant scheme administrators, to complete the implementation of the National Injury Insurance Scheme (NIIS).

Recognised by governments as a vital NDIS sustainability measure in itself, the lack of a fully operational NIIS was estimated to progressively add some $226m to NDIS costs in 2025/26, and an expected ~$1.3B in additional costs to the Scheme by 2041/42.4

Implementing a fully operational NIIS will make a genuine and direct contribution to the

long-term sustainability of the NDIS by establishing proper cross-scheme liability

arrangements for people with catastrophic injuries. Agreed to by the states as a condition of their original participation in the NDIS, completing the NIIS is well overdue and is a fiscally

responsible opportunity that has been neglected by successive Australian governments.

Recommendations: 23. The proposed eligibility limitations for people accessing lifetime support schemes or with compensation should be removed from the Bill.

The Commonwealth Government should lead the urgent implementation of the National Injury Insurance Scheme (NIIS).

4 Productivity Commission. (2017). Study report - National Disability Insurance Scheme (NDIS) Costs, p.259. Pc.gov.au. https://www.pc.gov.au/inquiries-and-research/ndis-costs/report/

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Support needs assessment, participant needs and plan budgets

The Bill introduces “Support determinations” as a new planning mechanism for NDIS

participants and signals the use of the Integrated Carer and Needs (ICAN) assessment tool to determine the support requirements for all participants. An algorithm will then use the

information generated by the ICAN assessment to determine a funding allocation for each

participant.

The Alliance does not oppose the development of more consistent and evidence-based

approaches to needs assessment across the Scheme. However, we do have significant concerns about the application of the ICAN tool (or any single tool) to participants with

neurodegenerative disability, for whom a single point-in-time functional assessment is inherently unsuitable as a planning instrument.

ICAN is, by design, a snapshot instrument. For people living with neurodegenerative disability, functional capacity is not a stable or fixed concept. It can change substantially and

unpredictably even over the course of a week, and certainly over the life of a plan.

In addition to the findings of the Joint Solutions Project, the Alliance’s direct experience further confirms that individuals living with neurodegenerative conditions will have unique

presentations and rates of decline that differ from others and are unique to them. For example, for people with young onset dementia, there are dozens of causes of dementia

presenting before age 65 – each with different symptoms, different rates of decline, different needs, different responses to intervention, different comorbidities and different

life circumstances.

Should the ICAN be implemented as a single tool assessment model, it will be yet another

attempt to impose an assessment method which, while it may be suited to a general

disability population with relatively stable needs, is clearly unsuitable for participants living with neurodegenerative and other progressive disabilities.

Far from being a theoretical concern, this outcome is the documented experience of people with young onset dementia navigating the current NDIS planning system before additional

inflexibility is added.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

The combined effect of the proposals in the Bill for a fixed-interval standardised assessment

and reduced access to reassessment, is a planning architecture that not only locks in a singular snapshot of need but then specifically prevents the timely updating of the

participant’s needs as the level of disability inevitably increases.

Far from being a planning approach suitable for people with neurodegenerative disability,

this mechanism appears designed to systematically underfund this group. The Commonwealth Government should expect such underfunding to increase the number of

individuals who will need admission to hospital because of the shortfall in their NDIS funding, and to deliver increasingly poorer outcomes for this group over time.

A legislative change that differentially disadvantages one group of severely impaired

participants compared to other participants was unexpected. It appears to have been conceived without reference to the needs of people with progressive conditions and, at that

very basic level, is a clear fault in the Bill.

The Alliance recommends that the provisions introducing a needs assessment be

withdrawn.

In its place, we direct the Committee’s attention to Recommendations 1 and 2 in this

submission that seek to remove what we assume is an unintended consequence of the amendments, and provide a suggested alternative, tailored planning approach for

participants with progressive conditions.

We wish to reiterate that individuals with neurodegenerative conditions are not the participant group that is inflating the Scheme’s costs. However, they are a group that the

current NDIS planning system has consistently failed from the outset.

There are no savings to be found in applying an inappropriate assessment tool to people

with progressive and life-limiting conditions. There is value, however, in developing an assessment approach that is designed specifically for progressive disability which is:

• iterative • responsive to clinical evidence, and

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

• capable of anticipating change rather than merely capturing a current functional

state.

In addition, an appropriate risk management strategy for this group must be developed transparently and in collaboration with participant representative and advisory groups,

including the NDIS Neurodegenerative, Palliative care and Rare diseases Advisory Group (NPRAG) of which the Alliance is a member.

We commend such an approach to Committee Members and look forward to the

Committee’s recommendations.

Recommendations:

The Scheme Actuary should be required to undertake a comprehensive analysis of Scheme experience with participants with neurodegenerative and progressive conditions that encompasses costs, planning outcomes, ART appeal rates and results, and patterns of changing needs over time.
The NDIA to use that analysis to develop an assessment, planning and funding regime that is demonstrably fit for purpose for participants living with life limiting, progressive conditions.
Narrowing of fundable support boundaries

The Alliance is concerned that the proposed amendments to s34(1)(aa) and the removal of

Note (b) in relation to old framework plans in the NDIS Act will have unintended and negative consequences.

The intent of these amendments is replicated:

• for new framework plans via amendments to s32L(2) and s32L(6)(a) and repeal of

s32L(6) (Note 2), and

• more generally by the introduction of a new s17B ‘Principles relating to scheme

sustainability’, specifically s17B(2)(a).

The proposed shift from a contributory causal framework for the calculation of fundable

supports to an exclusionary, rigid standard (“arising directly from an impairment”) represents a fundamental distortion of, and shift away from, insurance scheme design.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

By prohibiting the CEO from considering how environmental factors, non-eligible

impairments, medical co-morbidities and other external factors interact with a participant’s eligible impairment(s), the Bill creates an operational paradox. It aims for short-term fiscal

rationing but guarantees exponentially higher long-tail financial liabilities for both the Scheme and state public health systems.

5.1. Reversing Legislative Intent and Creating a Rigid Legal Silo

The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.

Act 2024 introduced section 34(1)(aa) and Note (b) (with similar provisions for new framework plans) to provide a clear legislative signal: disability support needs do not exist in

a biological vacuum. They are dynamically affected by a variety of external, environmental and health factors.

The current Bill’s amendment to omit “arising from an impairment” and insert “arising directly from an impairment or impairments” - paired with the deletion of Note (b) - seeks to

legally decouple these other factors (including co-morbidities) from the assessment of support needs for eligible impairments.

This creates an artificial barrier to holistic planning:

• The Clinical Flaw: Human physiology and functional capacity cannot be neatly

segmented into ‘eligible’ and ‘ineligible’ categories when multiple health conditions interact.

• The Legal Fiction: Forcing the NDIA’s CEO to disregard how an external factor exacerbates the support needs arising from an ‘eligible’ impairment forces delegates

to ignore reality and approve plans which contradict undisputed evidence on a systematic basis, currently for over 700,000 people.

5.2. Case Study: The Intertwined Risks of Spinal Cord Injury and Type 2 Diabetes

To understand the practical and financial ramifications of the proposed change, consider a

participant living with a spinal cord injury (eligible impairment) who subsequently develops type 2 diabetes (ineligible impairment):

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

(a) Compounding Risk Profiles: Adults living with spinal cord injuries face a 66%

increased risk of developing type 2 diabetes due to prolonged immobility and metabolic alterations.5

(b) The Multiplier Effect on Support Needs: Prolonged static pressure restricts blood flow to soft tissues, creating an inherent risk of tissue ischemia and cellular death (pressure wounds).6 The onset of type 2 diabetes severely compounds this risk by delaying wound healing, impairing micro-circulation, and accelerating the risk of severe complications like osteomyelitis, sepsis and amputation.7

participant’s spinal cord support needs as they are affected - and potentially

increased - by diabetes. This permits the funding of preventative, proactive adjustments - such as specialised wheelchair seating assessments, clinical nursing

oversight for skin integrity and wound care, and altered manual handling training for support staff.8

(d) The Impact of the Amendment on Preventing Future Impairment: Under the proposed wording, the CEO’s capacity to fund these responsive adjustments is

removed because the increased support need is triggered by the impact of an ‘ineligible’ impairment. The NDIA would be statutorily blocked from intervening

preventatively, despite the underlying vulnerability stemming from the primary

spinal cord injury.

(e) The “But For” Conundrum: If the participant would not require a specific support but

for the existence of their primary eligible impairment, it is logically flawed to deny

5 Peterson, M. D., Berri, M., Lin, P., Kamdar, N., Rodriguez, G. M., Mahmoudi, E., & Tate, D. G. (2021). Cardiovascular and metabolic morbidity following spinal cord injury. The Spine Journal, 21(9), 1520–1527. https://doi.org/10.1016/j.spinee.2021.05.014 6 Velozo, B. C., Hong, M. V., Bernardo, L. C., e Castro, M. C. N., Contreras-Ruiz, J., & Abbade, L. P. F. (2025). Pressure injury: update on general concepts, clinical aspects, and laboratory findings – Part I. Anais Brasileiros de Dermatologia, 100(5), 501187. https://doi.org/10.1016/j.abd.2025.501187 7 Meade, M. A., Yin, Z., Lin, P. S., Kamdar, N., Rodriguez, G., McKee, M., & Peterson, M. D. (2023). Type 2 Diabetes Increases the Risk of Serious and Life-Threatening Conditions Among Adults With Traumatic Spinal Cord Injury. Mayo Clinic Proceedings: Innovations, Quality & Outcomes, 7(5), 452–461. https://doi.org/10.1016/j.mayocpiqo.2023.08.002 8 Smith, B. M., Guihan, M., LaVela, S. L., & Garber, S. L. (2008). Factors Predicting Pressure Ulcers in Veterans with Spinal Cord Injuries. American Journal of Physical Medicine & Rehabilitation, 87(9), 750–757. https://doi.org/10.1097/phm.0b013e3181837a50

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

that support. A person without a spinal cord injury who develops type 2 diabetes

does not require a specialised custom wheelchair seating assessment, nor do they require specialised manual handling transfers. The need for these expensive

adjustments only exists because of the primary impairment. To legally classify these needs as “indirect” and therefore unfunded is a failure of basic logic.

(f) The Procedural Fairness Paradox - Restricting the CEO’s Ability to Uphold Legal Obligations: The proposed narrowing of section 34(1)(aa) would create a profound

administrative paradox for a delegate attempting to approve funding for this participant. The amendment would, prima facie, appear to legally force the CEO (and

therefore the delegate) to ignore critical medical evidence, rendering it impossible to

afford participants procedural fairness when determining “reasonable and necessary” supports.

By making information about the impact of diabetes legally irrelevant for the approval of funding and requiring the CEO to rigidly isolate an impairment from its

clinical reality, the proposed law would demand an administrative response that is both practically absurd and morally unconscionable. It would place NDIS delegates

in a potentially untenable position.

(g) The Workforce Impact: Where funding is inadequate to ensure that a participant can

be safely supported, providers face a dilemma. Their options are to:

o subsidise the required supports by providing them at a loss (potentially risking financial viability)

o restrict service to only funded supports knowing that the service is unsafe (and risk injury to the participant and/or their staff, a potentially regulatory action by

the NDIS Quality and Safety Commission), or

o withdraw from the service agreement (placing the participant at imminent risk).

None of these risks are addressed in the Bill.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

5.3. Actuarial Failure: Short-Term Rationing vs Long-Tail Liabilities

The NDIS was fundamentally designed on social insurance principles meant to prioritise a

lifetime approach to funding. Actuarial sustainability relies heavily on early intervention and preventative funding to reduce a participant’s long-term reliance on high-cost, high- intensity care. Error! Bookmark not defined.

The proposed amendments openly disregard this actuarial framework:

• The Illusion of Savings: Legally blocking funding for proactive adjustments (for

example, specialised seating or advanced wound monitoring) creates a false economy. The immediate cost is deferred but an escalating long-tail claim is

guaranteed.

• Predictable Functional Deterioration: Denying preventative care virtually locks in a

decline in a participant’s overall wellbeing. This drives up the future utilisation of high-cost Scheme supports, such as Supported Independent Living (SIL) or

permanent high-intensity nursing care.

• Unmodeled Cost-Shifting to Mainstream Systems: When preventable pressure

wounds escalate into acute medical crises like cellulitis or systemic sepsis, the financial liability is not eliminated - it is shifted directly to State and Territory public

hospital systems. A single acute or intensive care hospital admission costs the public

purse significantly more than the proactive NDIS capacity-building supports that would have prevented it.

No financial or actuarial modelling has been provided to the public or the Parliament to clarify the true cost of this amendment on the long-term liabilities of the Scheme, or its

downstream economic impacts on the broader Australian healthcare ecosystem.

Recommendations: 27. The amendments to s34(1) and s32L of the NDIS Act should be removed from the Bill. In addition, the new s17B and s48A(2)(b)(i) should be amended to avoiding the restrictive insertion of the word “directly”.

To avoid doubt:

the original wording of section 34(1)(aa) and s32L(6), as enacted in 2024 be retained

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

the Note (b) under section 34(1) and under s32L(6) should be retained to preserve the clear legislative guidance that participant support needs must be assessed holistically, acknowledging the real-world impact of environmental factors and co- morbidities.

The Scheme Actuary should be required to produce and publish a comprehensive cost-benefit analysis and lifetime liability impact assessment regarding any proposed narrowing of the fundable support boundaries before the Bill proceeds further.
Legislative Complexity

The NDIS legislative framework - including the NDIS Act, NDIS Rules and the Administrative Review Tribunal Act – is already extremely complex. The complexity is increased by multiple layers of Agency policy which take the form of Operating Guidelines9, website guidance10, and internal Agency directions to delegates (much of which is not made publicly available).

This is compounded by the NDIA’s inability to comply with relevant legislation. For example, the Agency routinely does not comply with requirements to:

• identify the name of the decisionmaker who approved a participant plan (Rule

16(4)(b) of the Administrative Review Tribunal Rules 2024)

• give reasons for decisions to approve a participant plan (s100 of the NDIS Act)

• meet prescribed timelines for making review decisions (s100(6A) of the NDIS Act)

• provide a Statement of Reasons for review decisions when requested (s268 of the

ART Act).

The new Bill will significantly increase this complexity. This complexity creates challenges for participants, providers and decisionmakers. Disputes are now common and will increase

if the Bill is passed in its current form.

9 National Disability Insurance Agency (NDIA). (2026a). Our guidelines | NDIS. Ndis.gov.au. https://www.ndis.gov.au/understanding-ndis/about-ndis/our-guidelines 10 National Disability Insurance Agency (NDIA). (2026). Policies, rules and legal | NDIS. Ndis.gov.au. https://www.ndis.gov.au/policies-rules-and-legal

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

There is considerable power devolved to the Minister to make Rules to modify broad new

powers in the Bill.

The Minister’s Department has published guidance that it is the Government’s intention to

effectively restrict the power of internal reviewers and the ART to substitute the correct or preferrable decision for an internal review decision, specifically by requiring the internal reviewer or ART to order a new Support Needs Assessment.11,12

The practical effect of this is, at worst, an effective denial of appeal rights. At best it

introduces another step which will delay the resolution of a dispute.

The Alliance provides pro bono representation at the ART for a significant number of people

with progressive conditions, including young onset dementia. Our experience is that the

current merits review process at the ART is not fit for purpose for participants with progressive conditions, specifically because it is not designed to respond quickly to urgent

issues.

In his Press Club address Minister Butler stated:

Decisions in the Federal Court and Administrative Review Tribunal have restricted the Agency’s ability to implement scheme changes to ensure the Scheme serves and supports those it was built for.

Legislative uncertainty has also raised serious questions over the Agency’s ability to implement a range of scheme changes designed to improve quality and control spending, such as the New Framework Planning agreed by all governments in principle some time ago.3

There is an inference in these words that the ART and the Federal Court have misapplied the law. If this was the case, it was the responsibility of the Minister, in consultation with the

Attorney-General, to appeal such matters. The absence of successful appeals to higher

11 Lyons, K. (2025, December 4). Most NDIS participants will lose external avenue to appeal funding amounts under new system, Senate estimates told. The Guardian; The Guardian. https://www.theguardian.com/australia-news/2025/dec/04/ndis-participants-will-have-no-external- avenue-to-appeal-funding-amounts-under-new-system-senate-estimates-told 12 Department of Health, Disability and Ageing (DoDHA). (2026). Reviews and appeals under the new way of planning (from mid-2026). https://consultations.health.gov.au/ndis/nfp-public- consultation/user uploads/fact-sheet—reviews-and-appeals-under-the-new-way-of-planning–1.pdf

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

courts in NDIS cases is prima facie evidence that this is not the case and any ‘fault’ lies in the

construction of the legislation or in the application by the CEO of the NDIA.

It is the Alliance’s view that the introduction of:

• additional complexity in the form of untested provisions for which there is no

modelling and which risk unintended consequences

• broad Rule making powers allowing the Minister to create delegated legislation on

important issues, including stipulating methods for assessment of funding requirements to address participant support needs and effective restriction of

merits review rights for participants, and

• a specific power to allow the Minister to introduce by way of legislative instrument

universal discounting to the funding of certain categories of support for all participants

risk destabilising the Scheme or severely deviating from the Objects of the NDIS Act. This would run counter to the express assurances of Minister Butler and the Prime Minister

about the Government’s intent.

The Alliance believes that there are a range of ways that the Commonwealth Government

could mitigate these risks, including:

• withdrawing the changes to s34(1) and s32L(6) of the NDIS Act until such time as the

Committee, and the public and the Parliament, has been provided with:

o cost-benefit analysis and modelling, with the relevant assumptions, from the Scheme Actuary to understand the expected impacts of the amendments in the Bill on (a) participants and (b) Scheme liabilities in the short and long

term, and

o modelling (including relevant assumptions) on Scheme costs (and therefore jurisdictional contributions from each government) from Commonwealth Treasury of the expected impacts of these amendments in the Bill

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

• narrowing the broad Rule making powers of the Minister and requiring provisions

that change the assessment parameters regarding participant funding to be enacted

in the NDIS Act

• requiring that in exercising any power to institute a discount to the funding of a

category of supports, the Minister needs to be satisfied that any discount will not introduce risk to the safety of participants in general or any group of participants.

Recommendations:

• Any amendments to s34(1) and s32L(6) of the NDIS Act to change the scope of what can be funded in a participant plan should require the Parliament to be satisfied that they amendments will not lead to an increase in (a) Scheme costs or (b) cost shift to the public health system.

• The amendments to allow broad Ministerial Rule-making powers should be modified to require any changes to the assessment parameters regarding participant funding to be enacted in the NDIS Act rather than the Rules.

• The amendments to allow specific Ministerial Rule-making powers under a new s34A to the NDIS Act should be modified to require that in exercising any power to institute a discount to the funding of a category of supports, the Minister needs to:

consult with Scheme stakeholders on any proposed discount, and
be satisfied that any discount will not introduce risk to the safety of participants in general or for any specific group of participants.

Workforce

The current workforce shortages in the NDIS sector significantly impact the lives of people with disabilities. These have been amplified due to the constant state of flux and reform and

the new Bill will add significant uncertainty to this already burdened system.

Providers seeking to provide quality care, especially for participants with complex needs,

continuously struggle to keep abreast of regulatory requirements while delivering safe and

effective support for participants with plan funding that is inadequate, often as a result of an arbitrary cut that does not align with the person’s needs or the evidence supplied.

In our intensive ‘deep dives’ with sector stakeholders over the last year as part of our Growing a Skilled Disability Support Workforce – National Workforce Collaboration Project,

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

the Alliance repeatedly heard similar stories about the major issues impacting all

stakeholder groups.

7.1. Current workforce is inadequate and unintentionally causes harm

The Scheme does not incentivise nor does it expect the support worker workforce to be

trained to any minimum standard, let alone be trained in skill sets suitable to perform their role safely and to a high quality. Training modules produced by the NDIS Quality and

Safeguards Commission measure attainment against compliance standards, but the content

has low alignment with the practical skills that are required or with individual participant needs.

This rigid but shallow mandatory training approach does not correspond with the realities of people accessing supports in which their needs are complex and dynamic, often changing

quickly, and impacted by other contextual issues – as is the case for all humans.

The proposed changes to s34(1) and s32L(6) – which would remove participant funding for

complex needs arising from the interaction of eligible impairments and other external factors – risks putting providers in a position where they may not be able to continue

providing services if they cannot get insurance cover to continue providing those services that are inherently unsafe for participants and staff.

7.2. No clear scope of practice

The question of participants and staff safety is compounded by the very broad scope of

practice for support workers. This makes it challenging to even define disability support work, let alone define entry level roles.

Workers who are in entry level positions are frequently supporting individuals with high and complex needs in isolation, with no mentoring or support from other, more experienced,

support workers. There is, however, no mandatory expectation or impetus for providers or

support workers to develop higher knowledge, gain skills and improve their confidence to meet the needs, responsibilities and risks of those with complex and degenerative needs,

such as those living with young onset dementia.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

For the many disability support workers and providers, this results in high levels of vicarious

trauma and poor social and emotional wellbeing, often leading to burnout and exiting the workforce. This, in turn, leads to a ‘revolving door’ of unskilled workers joining the disability

workforce at entry level, only to find that expectations of them do not align with the support that providers can provide; or the training that is required within the price caps that

are set for highly demanding and high risk work.

Providers confirmed to us that the cost to them to induct entry level staff who leave within the first 6 months is $3000-4000 per person.13

As structural reforms alter funding frameworks and provider regulations, the NDIS

Commission must act as an active regulatory safety net. It is critical that the Commission

exercises proactive, risk-based market oversight to ensure that legislative adjustments do not inadvertently compromise participant safety, trigger sudden service gaps, strip away

essential natural safeguards, or lead to sudden or mass depletion in the workforce in market segments in general, and for participant cohorts in particular.

To mitigate any unintended systemic consequences of the proposed amendments, the NDIS Commission must establish real-time compliance monitoring and emergency safeguard

protocols. When sweeping legislative instruments alter funding or operational boundaries, the Commission must serve as an institutional backstop – deploying proportionate,

responsive enforcement; and timely and proactive advice to the CEO NDIA and the NDIS

Minister to protect service continuity and prevent market failure.

While statutory amendments aim to secure the long-term sustainability of the Scheme, the

NDIS Commission holds a non-delegable duty to operationalise an administrative safety net. The regulatory framework must include mandatory feedback loops to swiftly identify

and rectify adverse impacts, ensuring that macro-level legislative instruments do not inadvertently breach the fundamental rights or safety of individual participants.

13 National Disability Services (NDS). (2025). State of the Disability Sector Report 2025. https://nds.org.au/images/State of the Disability Sector Reports/NDS8221%20NDS%20State%20of%20t he%20Disability%20Sector%20Report%202025 FINAL.pdf

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

Recommendations: • The Committee should require the Commissioner of the NDIS Quality and Safeguards Commission to provide advice on the expected workforce impacts of the Bill. Specifically, the Commissioner should be required to explain:

the expected impacts of the proposed changes on the ability of providers to ensure that they can adequately train and develop their disability support worker staff to safely meet the needs of participants with the new levels of funding expected under the amended NDIS Act, with specific emphasis on those with complex progressive conditions
how the Commission will proactively monitor, and provide real-time feedback to the Government, to ensure that legislative adjustments do not create unintended risks to safety, create service gaps, remove or compromise safeguards, or lead to sudden or mass depletion in the workforce (in general, in geographical locations, and for particular participant cohorts)
how the Commission intends to improve the access to fit-for-purpose training and education for providers, including entry level staff, and ensure that any expectations on providers to train and credential their staff can be met at the price levels set by the NDIA and within the funding levels approved to meet the needs of individual participants, and specifically participants with complex and progressive conditions
how the Commission will proactively monitor, and provide real-time feedback to the Government, to ensure that legislative adjustments do not create unintended risks to safety, create service gaps, remove or compromise safeguards, or lead to sudden or mass depletion in the workforce (in general, in market segments, and for particular participant cohorts)
the Commission’s plan to address the potential for vicarious trauma for support workers if the amendments result in an expectation that they take on more responsibility without the benefit of additional paid training and skills development, or to provide supports that are unsafe for the participant or themselves.

Conclusion

For more than two decades, the Alliance has advocated for those young Australians with high and complex health and disability support needs who, again and again, fall between the

jurisdictions and the design assumptions of systems that were not built for them.

People living with young onset dementia and other neurodegenerative conditions are

among the most vulnerable of these. They live with conditions that worsen over time, that

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 255

are complicated by other comorbid conditions, that interact with multiple service systems,

and that the NDIS planning framework has never adequately or appropriately addressed.

The measures addressed in this submission share a common and serious flaw: they apply

administrative controls designed for a different part of the participant population to a cohort for whom those controls will predictably cause harm and will not deliver the savings

anticipated.

The Alliance urges the Committee to recommend targeted amendments to the Bill to

protect this cohort, and to press the Government for a credible, evidence-based strategy – including actuarial analysis of cohort experience – that enables the NDIS to support people

with neurodegenerative disability appropriately and sustainably.

Finally, as a policy framework for responding to the needs of people with young onset dementia within the NDIS and across the broader social care service systems, the Alliance

also recommends the Committee advise the Government to give effect to the recommendations of Time Won’t Wait - The Joint Solutions Young Onset Dementia Project

Final Report.

The Alliance welcomes the opportunity to appear before the Committee to give evidence on

any aspect of this submission.

Further contact Dr Bronwyn Morkham CEO