Risks to palliative care supports for people with life-limiting conditions (Individual advocacy) | External submission

Submission 307

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submission to the Senate Community Affairs Legislation

Committee

May 2026

(02) 6232 0700 pca@palliativecare.org.au palliativecare.org.au

Submission 307

Summary

1.1. About Palliative Care Australia

Palliative Care Australia (PCA) is the national peak advocacy body for palliative care, and represents all those who work towards high-quality palliative care and end of life care for all Australians who need it.

Working closely with consumers, our Member Organisations and the palliative care workforce, PCA aims to improve access to and promote palliative care.

1.2. The NDIS Scheme Amendment Bill 2026

PCA values the opportunity to provide advice to inform the Committee’s consideration of this important legislation.

PCA acknowledges that the Bill aims to ensure the sustainability of the NDIS, and improve consistency of NDIS decisions about eligibility and supports.

However, as drafted, the Bill risks unintended and disproportionate impacts on people with functional support needs caused by progressive life-limiting conditions.

The proposed changes to eligibility, functional needs assessment and to the responsibilities of the NDIS and the health system create risks of:

Unreasonably precluding entry to the NDIS for people with life-limiting conditions who are undergoing treatment – with both the legislative definition and future operational interpretation of “appropriate treatment” highly unclear, and the proposed carve-out for treatments to maintain functional capacity (including for those with degenerative conditions) is ill-defined and open to misinterpretation.
Reducing the already-constrained capacity of the NDIS to respond flexibly and swiftly to fluctuating functional capacity and to rapid functional decline – both frequently experienced by people with life-limiting conditions that cause permanent and significant disability.
Delayed decision-making timeframes that are unsuitable for people with short- life expectancies, including a proposed 90-day timeframe for decisions about unscheduled plan reassessments.
Decreased NDIS capacity to intervene early to meet the functional support needs of people with progressive terminal conditions before these reach crisis point – causing escalating unmet support needs and attendant higher costs.
Further fragmenting the care and supports offered to people with life-limiting conditions by the health system, the NDIS and other service systems including new Foundational Supports that are in early development.

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Together, these aspects of the Bill, as drafted, present an unacceptable risk to the safe, dignified care and support of people with functional needs that arise from a life-limiting condition. PCA is not aware of any published DHDA or NDIA analysis to indicate that these potential serious impacts on people with life-limiting illnesses have been considered in the drafting of the Bill. While the Bill and Explanatory Statement note that receiving ongoing treatment to “maintain functional capacity” for those with degenerative conditions will not preclude their NDIS participation, it contains no other measures to mitigate the potential impacts described above. In PCA’s view it would be premature to support the Bill without structured consideration of these issues.

1.3. NDIS change process The Bill provides a legislative foundation for key changes to the NDIS, which will have significant impacts on participants and applicants with life-limiting conditions. These include the development of a new threshold for significant disability (that will determine access to the NDIS), and new tool/s to assess functional capacity and support needs. It is essential that this work be undertaken with advice and involvement from people with lived experience of life-limiting conditions and palliative care - consumers, carers and clinicians and their representative organisations.

The recent introduction of an NDIS Priority Access Pathway for people with life-limiting conditions is a positive development, which supports more responsive NDIS decision making about eligibility and plans for people with life-limiting conditions. It is essential that this pathway be maintained – and strengthened – as changes to the NDIS proceed.

1.4. The NDIS and health interface The significant changes to the NDIS set out in the Bill cannot be considered in isolation from the wider service delivery context for people with life-limiting conditions. There continues to be widespread confusion about which services and systems are responsible for provision of home-based functional supports for this cohort. At present, there are extremely limited options outside the NDIS for people with substantial functional impairment caused by a life-limiting condition. PCA estimates that some 5,000 to 10,000 Australians under 65 miss out, each year, on basic home-based supports in their final months and weeks of life.

Many people under 65 with life-limiting illness are hospitalised unnecessarily or experience delayed discharge due to the absence of these functional supports. This is a major contributor to the challenge of “stranded patients” in our public hospitals. Relatively inexpensive home-based support would reduce avoidable hospitalisations and shorten hospital stays for people with life-limiting illness and functional support needs.

The NDIS Independent Review recognised that people with complex life-limiting conditions often require simultaneous support from multiple systems. For people with

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disabilities arising from a life-limiting diagnosis, functional supports cannot be neatly separated from healthcare needs. If NDIS supports are withdrawn or restricted for this cohort without robust alternatives, further pressure will shift to already overstretched hospital, community health and palliative care services. The Bill proposes clearer legislated boundaries between the NDIS and mainstream health systems, but this will not achieve better outcomes unless it is accompanied by investment in these adjacent systems and in cross-system integration.

Recommendations In light of the above, PCA recommends that the Committee consider opportunities to amend the Bill to ensure that:
Unscheduled plan reassessments be subject to shorter NDIS decision-making timeframes than the proposed 90 days; with appropriately swift decision-making timeframes for unscheduled reassessments and all other decisions about essential supports for people with a life-limiting conditions, degenerative illness or short life expectancy.1
It includes clearer definitions and guidance in relation to “appropriate treatment” (which the Bill indicates must be exhausted to establish eligibility for NDIS supports) and “treatments to maintain functional capacity” (that the Bill proposes may be continued while receiving NDIS supports).
Functional capacity assessments appropriately account for fluctuating and progressive life-limiting conditions; and include clear processes to consider clinical expertise.

PCA also encourages the Committee to consider options to ensure:

The functional support needs of people under 65 with life-limiting conditions are prioritised in the disability reform process, with the aim of resolving the current service gap for those who are not eligible for NDIS supports.
Individuals and organisations with experience of life-limiting conditions and palliative care be involved in advising on the implementation of NDIS reforms, including via the Technical Advisory Group that will be established to determine the new eligibility threshold for the NDIS.

1 Seven days, which currently applies to urgent eligibility determinations under the NDIS Priority Access Pathway for people with life-limiting conditions, would be an appropriate maximum timeframe.

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Life limiting conditions The life-limiting illnesses of concern in this context include neurodegenerative illnesses, genetic conditions, advanced cancers (which can have significant functional impacts) and cerebrovascular illness including stroke. These conditions affect adults, children and young people; and their families and carers. People with these life-limiting conditions often have complex care requirements that cross health and disability systems - including in the final months and weeks of life. Many of these diverse conditions are degenerative, meaning they will generally present with fluctuating functional impacts, a trajectory of increasing support needs over time, and periods of rapid but often unpredictable deterioration in function.
Issues in the Bill PCA’s advice focuses on Schedule 1 of the Bill, which includes proposed changes to access, planning and reassessment processes. Taken together, these proposed changes risk creating significant barriers to essential functional supports for people with life-limiting illness.

4.1. Eligibility for the NDIS: ‘all appropriate treatments’ and treatments to ‘maintain functional capacity’ The Bill proposes that NDIS applicants and participants be required to undergo “all appropriate treatment” in order to demonstrate that their disability is permanent and therefore eligible for NDIS supports. In practice, a person will not meet NDIS eligibility criteria if they have not exhausted all treatments which are “likely to materially improve, reverse or alleviate” their condition. PCA is concerned this will have the unintended consequence of unreasonably restricting access for people with life-limiting conditions that cause functional impairment.

PCA welcomes acknowledgement in the Bill and Explanatory Statement that ongoing treatment to “maintain functional capacity”, including specifically for people with degenerative conditions, will not preclude NDIS eligibility. However, the Bill does establish the scope of what treatments would be considered to “maintain functional capacity” without jeopardising NDIS eligibility. This is likely to create uncertainty for NDIS applicants and participants with progressive and fluctuating conditions, as well as for NDIS assessors and planners.

The Bill does not adequately define what constitutes “all appropriate treatment”. In practice, NDIS assessors and planners are likely to interpret this concept inconsistently, leading to inconsistent decision-making – precisely the outcome the Bill seeks to avoid. Additionally, the requirement to exhaust all appropriate treatments before commencing NDIS supports appears likely to lead to significant delays in people seeking entry to the NDIS.

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The Bill indicates that further legislative instruments (presumably Rules) will be developed to establish further guidance to determine whether all appropriate treatments have been undertaken. However, given the significant implications of this proposed change for NDIS eligibility for people with progressive life-limiting conditions, it is PCA’s advice that these issues should be fully explored prior to the passage of the Bill.

While the Bill indicates that evidence-based treatment and published evidence will be consulted to determine what treatments are “appropriate”, it does not stipulate any qualifications or skills that NDIS staff must hold in order to interpret potentially complex medical literature capably. Nor does the Bill set out a process for seeking expert clinical advice to assist in determining what constitutes “all appropriate treatment” for a specific condition or in individual circumstances. Yet clinical guidance about this question will be essential to ensure safety and dignity of participants and applicants, particularly when complex issues arise, for example when:

a treatment is generally appropriate for the condition, but is not clinically appropriate for an individual.
a treatment may be considered appropriate, but is unacceptable to an individual due to side effects or quality of life impacts.
new treatments become available, but may incur costs to consumers (for example when a treatment or experimental medication is not yet PBS or MBS listed) – raising the question of what would be considered an acceptable or reasonable cost to consumer for treatments.

The Bill should make explicit provision for clinical advice to be sought in situations such as this.

The Bill provides no clarity about what evidence NDIS applicants would be required to provide to demonstrate that they have exhausted appropriate treatments. There is potential for this requirement to place substantial evidentiary burden on applicants and their treating health professionals. It is plausible that the time and cost involved in gathering this evidence to the satisfaction of the NDIS could create an unreasonable barrier to NDIS supports for people with short life expectancies and/or degenerative conditions. Time is of particular essence for this group, some of whom may die before they can negotiate the administrative process despite clear need for functional support.

The Bill acknowledges people may face barriers to appropriate treatment, including due to geography or direct-to-consumer / out-of-pocket costs of care. The Bill explicitly indicates that it is not the role of the NDIS to fill gaps in the provision of affordable, accessible health services. This accepts that situations may arise in which people with life-limiting conditions are unable to access appropriate treatment from the health system due to cost or geographic disparities in access to care; and on this basis will also be excluded from accessing functional supports from the NDIS. This does not

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appear an adequate approach to safeguarding access to either system for highly vulnerable people.

PCA recommends the Committee consider options to amend the Bill to include clearer definitions and guidance in relation to “appropriate treatment” (that must be exhausted to establish eligibility for the NDIS) and treatment to “maintain functional capacity” (that may be continued while receiving NDIS supports).

4.2. Functional assessment The Bill sets out a new approach to functional capacity assessment. A risk in the proposed approach is that depends on a static, point-in-time, assessment of capacity. Consequently, it may inadequately reflect the realities of fluctuating capacity and rapid / unpredictable decline that are common in life-limiting conditions.

PCA notes that the tool/s that will be used to undertake functional assessments are still in development. It is imperative that these new assessment tool/s fully account for palliative care needs and the trajectories of life-limiting illnesses. Crucially, this must include the range of developmental trajectories for children and young people with life limiting conditions. Clinical expertise must be considered in the functional assessment process for children and adults with life-limiting conditions.

PCA recommends that the new approach to functional capacity assessment must appropriately reflect the realities of fluctuating and progressive life-limiting conditions. This will require meaningful involvement from clinicians, consumers and carers with experience of life-limiting conditions and palliative care.

4.3. Unscheduled assessments The Bill proposes to replace the current approach to plan reassessment, with an “unscheduled reassessment” process which it is proposed can only occur after a significant change of circumstances. For people with life-limiting illness, this risks insufficient flexibility to respond to fluctuating support needs and to rapid deterioration. It is not clear that plan variation arrangements currently being considered by the NDIA as part of the new framework planning approach will sufficiently respond to these realities.

The Bill proposes longer NDIS decision-making timeframes following an unscheduled reassessment. Specifically, decisions about changes to plans following an unscheduled reassessment would be made within 90 days. This is significantly longer than the 30 day timeframe that currently applies to reassessment decisions. This timeframe is not appropriate for people with rapidly changing support needs or short anticipated prognoses. It is reasonably foreseeable that participants with life-limiting conditions who request an unscheduled reassessment due to significant deterioration in their functional capacity could die within a 90-day decision timeframe.

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PCA recommends that this timeframe, and timeframes for all decisions about eligibility, assessment and plans for people with life-limiting illness, be amended.

The current timeframe of seven days for urgent eligibility decisions under the NDIS Priority Access Pathway for people with life-limiting conditions would be an appropriate timeframe to apply to all decisions impacting on supports for those with short life expectancies.

4.4. Early intervention The Bill’s proposed changes to eligibility and assessment appear to limit the scope for an early intervention approach for people with progressive life-limiting conditions. This is unfortunate as the early intervention pathway (at Section 24 of the Bill) has underutilised relevance for both children and adults impacted by progressive life limiting illness. Early commencement of functional supports can often lead to better outcomes for individuals and families, as well as reduced costs of care and supports – including due to deferred or avoided need for hospital admission or more intensive supports following escalation in care needs.

It is unclear how the NDIS early intervention pathway will continue to operate under the changed arrangements proposed in the Bill. The future alignment between the early intervention pathway and Foundational Supports is also unclear. This has particularly significant implications for children and young people with life-limiting conditions that either cause or present together with developmental delay, and their families, who may first access assistance via Foundational Supports.

4.5. Priority Access Pathway

At present, the capacity of the NDIS to respond swiftly to the needs of participants with short prognoses and progressive illness can fairly be described as constrained. The NDIS focus on long-term supports for economic and social participation is not always well-aligned with the needs of these cohorts.

The recent introduction of a Priority Access Pathway for people with life-limiting conditions is a very positive development in this area. The Pathway provides a decision about eligibility with seven working days, and a first plan with a month. This approach is appropriate, and it is essential that this pathway be maintained – and indeed strengthened – as changes to the NDIS proceed.

4.6. Carers and families The Bill sets out new requirements that informal family and carer supports must not be replaced by NDIS services (unless informal arrangements are unsustainable or unsafe). This requirement risks placing additional pressures on family carers, including the parents of children with progressive life-limiting conditions. It is essential that the support needs of carers are recognised, and that disability and palliative carers have access to dedicated supports in this role.

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4.7. NDIS and health system interface The Bill sets out expectations of clearer, and more strictly enforced, boundaries between the responsibilities of the NDIS and other systems – including the mainstream health system. The NDIS Independent Review made clear that there is currently significant confusion about the respective responsibilities of the NDIS and the health system, for people with life-limiting conditions who require functional supports. The Independent Review recommended both clearer system responsibilities and a more collaborative cross-system approach to providing these supports.

The Bill provides a framework to delineate system responsibilities, but not to coordinate health and disability supports for people who require palliative care. In the absence of structured arrangements for cross-system coordination, the Bill’s efforts to clarify system boundaries risk further fragmenting the care and support provided to a highly vulnerable cohort.

PCA estimates that some 5,000 to 10,000 Australians under 65 miss out, each year, on basic home-based supports in their final months and weeks of life. Many people under 65 with life-limiting illness are hospitalised unnecessarily or experience delayed discharge due to the absence of these functional supports. This is a major contributor to the challenge of “stranded patients” in our public hospitals. Yet relatively inexpensive home-based support would reduce avoidable hospitalisations and shorten hospital stays for people with life-limiting illness and functional support needs.

The changes currently occurring in the NDIS and wider disability system provide a critical opportunity to identify how supports of this kind should best be provided, including outside the NDIS.

PCA encourages the Committee to consider options to ensure that the functional support needs of people under 65 with life-limiting conditions are prioritised in the disability reform process, with the aim of resolving the service gap for those who are not eligible for NDIS supports.

4.8. NDIS change implementation In this submission PCA has raised a range of potential serious impacts of the proposed changes, on people with life-limiting conditions.

It is imperative that individuals and organisations with experience of life-limiting conditions and palliative care be involved in advising on the implementation of NDIS reforms set in process by the Bill. This should include via the Technical Advisory Group that will be established to determine the new eligibility threshold for the NDIS.

Concluding remarks PCA’s advice in this submission is intended to ensure that reforms to the NDIS support access to essential support and care, for all Australians with functional support needs arising from a life-limiting illness.

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PCA would be glad to provide additional advice about these issues, to inform the Committee’s ongoing considerations.