Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Genetic Alliance Australia
c/o Garvan Institute of Medical Research
39/384 Victoria Street, Darlinghurst NSW 2010
ABN 83 594 113 193 | CFN 1548101 June 2026
Committee Secretary
Senate Community Affairs Legislation Committee
Department of the Senate
PO Box 6100
Parliament House
Canberra ACT 2600
By upload: communityaffairs.sen@aph.gov.au
Submission to the Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Dear Committee Secretary,
Genetic Alliance Australia (GAA) welcomes the opportunity to make this 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, introduced to Parliament on 14
May 2026.
Summary of our submission
Approximately two million Australians live with a rare disease, the vast majority of which are genetic
in origin. More than 7,000 distinct rare conditions have been identified globally, the majority
affecting children, and many associated with permanent and significant disability attributable to one
or more intellectual, cognitive, neurological, sensory, physical or psychosocial impairments. A
substantial subset of this population, often described as the SWAN (syndromes without a name)
community, live with significant disability despite remaining without a confirmed diagnosis.
Many of the design assumptions underpinning the Bill, including relatively stable disability,
measurable functional capacity, predictable trajectories, and established treatment pathways, do
not consistently hold for this group of Australians. The reforms risk embedding within the NDIS a
model of disability that does not work for progressive, multisystem, fluctuating and clinically atypical
conditions. This creates a risk of structural disadvantage and exclusion for large parts of the rare
disease community with lifelong and highly complex disability support needs
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
This risk is particularly driven by:
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the proposed functional capacity assessment framework under proposed section 9B
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revised permanence and treatment provisions under proposed sections 24(5), 25(1B) and 25A
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evidentiary frameworks under proposed sections 34(1E) and 34(1F) that may privilege generalisable evidence over participant-specific evidence
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support determination and planning mechanisms under proposed section 34A
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reassessment thresholds for progressive and episodic conditions under proposed section 48A
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expanded suspension, revocation and administrative powers under proposed sections 30(1A) and 40A
Genetic Alliance Australia acknowledges the Government’s objective of improving consistency,
equity and sustainability within the Scheme. We support efforts to reduce fraud. However,
sustainability cannot be achieved through reforms that inadvertently disadvantage people whose
disabilities are difficult to standardise, poorly understood, clinically atypical or characterised by
uncertainty and fluctuation. Australians with rare conditions are unlikely to have their disability
support needs met through mainstream or foundational support, even when these are in place. This
includes Thriving Kids, which has not been designed to cater for the complexity of development
delay combined with physical impairments, sensory disabilities, seizures and progression, that is
common for children with rare conditions.
This submission identifies a number of provisions within the Bill that may create disproportionate
adverse consequences for people living with rare, genetic and undiagnosed conditions, and proposes
amendments and implementation safeguards to reduce those risks. We are concerned that this Bill
will enshrine into legislation an approach that will see the neglect, violence and abuse of people with
a disability that was brought to light in the Disability Royal Commission continue.
Genetic Alliance Australia asks the Committee to recommend:
- substantial amendment to the Bill before passage
- extended and meaningful consultation with the rare and undiagnosed disease community
- explicit safeguards to ensure the NDIS appropriately accommodates people living with progressive, fluctuating, multisystem and rare conditions that lead to significant and
permanent disability.
The risks of proceeding with the Bill are that costs and risks are shifted from the NDIS to the lives of
the most vulnerable Australians.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Summary of concerns and recommendations
Concern Recommendation
The consultation timeframe is insufficient for the Extend the inquiry timeline to at least August rare and undiagnosed disease community to 2026 and defer passing of the Bill pending engage meaningfully. targeted co-design with the rare and undiagnosed disease community. Any revised legislation should be released as an exposure draft prior to passage.
Standardised functional capacity assessment, Establish a rare and undiagnosed disease applied without rare disease expertise. This pathway for functional capacity assessments, creates a significant risk of underestimating need with mandatory specialist input, recognition of in people with rare and undiagnosed genetic fluctuating and episodic disability, human conditions, whose presentations are fluctuating, override of algorithmic assessment outcomes, multisystem and poorly understood. and assessor training in rare disease. Section 9B
Tighter permanence and “appropriate Clarify in the Bill that a diagnosed or clinically treatment” criteria risk excluding people whose established rare condition associated with genetic condition is incurable but for which lifelong and substantial functional impairment partial, maintenance or emerging therapies should ordinarily satisfy the permanence exist. criterion, and that emerging or partially effective Sections 24(5), 25(1B) and 25A therapies do not, of themselves, negate permanence.
Undiagnosed and ultra-rare participants may Establish access and planning arrangements struggle to satisfy evidence-anchored access and responsive to participants on a diagnostic planning criteria. Four proposed new or odyssey and to those with ultra-rare conditions, amended provisions — ss 25A, 34(1)(aa), 34(1E)– including amendment of s 34(1E)–(1F) to prevent (1F) and 48A — are difficult to apply where denial of supports where the only relevant diagnosis or peer-reviewed evidence is limited. evidence is condition-specific or participant Sections 25A, 34(1)(aa), 34(1E)–(1F) and 48A specific.
Narrow interpretation of supports arising Retain whole-of-person assessment principles. “directly” from impairment risks fragmenting At minimum, ensure people with multisystem support for people with multisystem rare rare conditions are assessed holistically and not conditions. through impairment-by-impairment logic. Sections 34(1)(aa)
Ministerial “support determinations” and Exempt participants with documented complex funding caps risk reducing participation, rare disease need from across-the-board capacity-building and 1:1 supports that are reductions. Any reductions must exclude clinically essential for many rare disease supports that are sustaining function, ensuring participants. safety or preventing regression. Preserve
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Concern Recommendation
Sections 34A, 33(2EA)–(2EB)) individualised assessment of 1:1 and high intensity supports.
Tighter unscheduled reassessment thresholds Introduce a clinical deterioration trigger and 90-day decision timeframes are requiring an urgent reassessment within 28 days incompatible with progressive, episodic and where treating clinicians document a significant unpredictable rare conditions. change in condition. Section 48A
No rollover of unspent funds penalises rare Permit rollover where underspend is attributable disease participants whose underspend reflects to documented external factors, including workforce shortages, hospitalisation and lack of workforce shortage, hospitalisation, provider specialist providers — not unmet need being unavailability or pending procurement of absent. approved supports. Section 50A
Expanded presumptions of parental Amend the Bill to explicitly benchmark all responsibility risks reclassifying disability-related categories of presumed parental responsibility supports as ordinary parenting. against the care ordinarily required for a child of Sections 34(1G)–(1H), particularly (1H) (a) the same age without disability.
Plan suspension and revocation provisions will Specify standards for “reasonable attempts” to disproportionately affect participants who are contact a participant, require contact methods uncontactable through standard channels, to meet accessibility needs, and require the CEO including people with intellectual disability, to consider risk before suspending or revoking. communication impairment, sensory disabilities, hospitalisation or unstable circumstances. Sections 40A, 30(1A)
Expanded Ministerial powers, automated Strengthen safeguards: independent review of decision-making and broad delegated rule- support determinations and caps, mandatory making powers operate without participant rare disease impact analysis on delegated appeal rights, disproportionately affecting instruments, and meaningful merits review of all people who already struggle to be understood access and planning decisions, including by the system. reinstatement of a pre-Tribunal independent expert review mechanism.
About Genetic Alliance Australia
Genetic Alliance Australia is a national umbrella organisation representing individuals, families and
other rare and genetic condition organisations across Australia. Established in 1988, we have worked
for more than three decades to connect people affected by rare and genetic conditions to
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
information, peer support, and the clinical and research communities. Our network includes more
than 140 rare disease and community organisations and condition-specific support networks.
Our community includes people living with severe neurodevelopmental, neurological, metabolic and
chromosomal conditions, connective tissue disorders, inherited cancer syndromes, mitochondrial
disease and undiagnosed conditions. Many individuals within our community rely on the NDIS not
simply for therapies or equipment, but for essential supports that enable safety, communication,
regulation, participation, supervision, independence and daily functioning.
The consultation window for this Bill has materially constrained the capacity of GAA’s rare and
undiagnosed disease community to engage in the depth this proposed reform warrants. Our
communities are geographically dispersed and disproportionately reliant on family carers whose
time and capacity are often consumed by the day-to-day work of complex care coordination,
advocacy and medical management.
- Why rare and undiagnosed conditions require specific consideration
Rare genetic conditions share characteristics that distinguish them from other disability profiles
around which it appears the present Bill is built. These characteristics are reflected in Australia’s
National Strategic Action Plan for Rare Diseases and are well established in literature.
1.1 Multisystem complexity
Rare genetic conditions typically involve multiple body systems and multiple categories of
impairment occurring concurrently. A single condition may produce a range of neurological,
cognitive, intellectual, sensory, physical or psychosocial impairments. These are not separate
impairments to be sequenced; and they interact cumulatively across the person’s daily life.
1.2 Progressive and episodic trajectories
Many rare conditions are progressive or episodic rather than stable. Skills may be lost rather than
gained; periods of relative stability may be punctuated by acute deterioration; some conditions
involve developmental stalling or regression. The implicit planning assumption that disability is
stable and amenable to improvement-oriented goal-setting does not align with these patterns.
1.3 Diagnostic uncertainty and limited evidence environments
By definition, rare diseases are individually uncommon. The literature for any given condition is
limited, natural history studies are frequently absent, and standardised assessment instruments are
typically not validated against most rare disease populations. Evidence regarding which supports and
therapies are effective is frequently sparse, highly person-specific or not generalisable across the
rare disease population.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
A significant proportion of people living with a rare genetic condition have no molecular diagnosis
meaning that despite having a confirmed or strongly suspected genetic cause for their condition, the
specific gene or genetic change responsible has not been identified. The functional impairment is
real and observable; what is missing is the biological explanation that would confirm which gene is
involved, why, and what that means for prognosis and treatment.
The diagnostic odyssey routinely takes five to seven years, and for some never concludes. During this
time, functional impairments and associated need for support exist. Ultra-rare conditions —
affecting fewer than one in fifty thousand Australians, sometimes only a handful — sit in a similar
position, often with no other family in Australia living with the same condition. People in these
circumstances have documented, permanent and substantial functional impairment, but lack the
diagnostic certainty and recognised evidence base that the Bill’s assessment and evidentiary
provisions assume will exist. The implications of these features for specific provisions of the Bill are
examined in Section 2.
Rachael’s story: What rare disease disability looks like
Rachael lives with a rare mitochondrial disease, impacting only 1 or 2 Australian children. Her needs
rapidly increased after her second metabolic stroke: Rachael lost most of her hearing, has restricted
movement due to daily muscle spasms and swallowing difficulties. Her development has slowed and
she now requires intensive allied health therapy to acquire skills: physiotherapy, speech, OT and
hydrotherapy.
Rachael’s life is severely restricted now because she if she contracts a common virus she is likely to
have a further stroke or other catastrophic outcomes. She is no longer able to attend day care due
to this risk, which has reduced her parents’ ability to work.
Rachael’s condition continues to be episodic. When Rachael is well, she can attend an outdoor
playgroup (only outdoor to manage her risk of infection). When she is unwell, she lives a very
isolated life.
Recently, Rachael’s family have benefited from a targeted NDIS pathways for childhood dementia.
Rachael’s Mum shared “The NDIS delegate we work with now has more empathy and a greater
understanding of ways Rachael’s condition may progress – just knowing that things can change
quickly. When we needed a special needs pram and car seat it was funded really quickly – I believe
this would have been impossible without this pathway.”
Rachael’s mother
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
- Specific concerns with the Bill This section analyses key provisions of the Bill against the lived reality of the rare and undiagnosed
disease community. Each subsection identifies the reform, names the risk for our community, and
makes a recommendation to the committee.
2.1 Insufficient consultation given the complexity of the reforms
The consultation window for this Bill has materially constrained the capacity of GAA’s rare and
undiagnosed disease community to engage in the depth this proposed reform warrants. Our
communities are geographically dispersed and disproportionately reliant on family carers whose
time and capacity are often consumed by the day-to-day work of complex care coordination,
advocacy and medical management. Individual rare disease organisations often rely on volunteers to
liaise with community members on top of ongoing peer support activities.
Recommendation: Extend the inquiry timeline to at least August 2026 and defer passing of the
Bill pending targeted co-design with the rare and undiagnosed disease community. Any revised
legislation should be released as an exposure draft prior to passage.
2.2 Standardised functional capacity assessment
Section 9B Proposed section 9B supports the development of more standardised assessment approaches for
determining access, with criteria, methods and matters to be considered to be set out in NDIS Rules
informed by a Technical Advisory Group. The Government has indicated this is intended to enable
more consistent, objective and evidence-based assessment of functional capacity, moving the
Scheme away from sole reliance on reports from treating clinicians and allied health practitioners.
For some people with rare genetic conditions, this approach will remove one barrier to access. The
lists of diagnoses frequently excluded many rare conditions and placed burden on applicants to
prove the legitimacy of their diagnosis.
However, for people with rare genetic conditions, standardised assessment carries significant risk of
systematic underestimation of need. Function fluctuates with seizure activity, pain, fatigue, sleep
disruption, sensory load and behavioural state, and standardised instruments capture the
participant at a moment in time. They also underestimate the load of constant supervision, the
cognitive labour of medical management, and the cumulative impact of multiple concurrent
impairments — features routine in rare disease but not in the populations against which assessment
tools are typically validated.
A specific gap arises in relation to supervision and safety. Subsection 9B(1)(a) defines functional
capacity by reference to what a person can do “without assistance from other people, assistive
technology or modifications.” This risks reducing functional capacity to a narrow assessment of
whether a person can physically or technically perform an activity, without adequately considering
whether they can do so safely without support.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
For many participants with rare conditions or complex disability-related needs, the key issue is not
that the person is incapable of undertaking the activity at all, but that they cannot undertake it
safely without supervision, monitoring or assistance. This includes participants who may walk
independently but have no awareness of road danger, children who can eat but face aspiration or
choking risks without supervision, and participants who can sleep independently but require
overnight monitoring due to seizure activity, sleep-disordered breathing or behavioural escalation.
In these circumstances, the relevant limitation is not simply whether the person can perform an
activity at a point in time, but whether they can undertake it safely, reliably and without significant
risk of harm. An assessment framework focused on what a person can do “without assistance” may
therefore fail to capture the real nature of disability-related support needs associated with safety,
supervision and risk management.
Another gap arises in relation to fluctuating and energy limiting conditions, particularly those that
also involve cognitive impacts. Subsection 9B(1)(a) defines functional capacity with no reference to
how capacity varies day to day or between activities. For some participants with rare conditions such
as a mitochondrial disease or a connective tissue disorder, they may be able to perform an activity
without assistance on a day they have relatively higher energy levels, but not the next day.
The Bill does not require Technical Advisory Group membership to include rare disease clinical
expertise, does not require assessment tools to be validated against rare and complex populations,
and does not require assessors to have rare disease training. Where a Technical Advisory Group is
convened to inform the criteria and tools under section 9B, that group should include clinical
expertise in rare and genetic disease.
Equally important is the need for a safety valve within any standardised or algorithmic assessment
process. Where an assessment tool or its underlying methodology produces an outcome that does
not reflect a participant’s actual presentation, support history or reality, a suitably qualified clinician
must retain the explicit capacity to override that outcome. The recent aged care experience is
instructive: when the capacity for human override was removed from the Integrated Assessment
Tool under the new Aged Care Act on 1 November 2025, the Department recorded approximately
414 requests to review assessment decisions between November 2025 and January 2026, rising to
834 within five months — a near five-fold increase on the 170 review requests across the preceding
financial year — and prompting a Commonwealth Ombudsman investigation. People living with rare,
genetic and undiagnosed conditions are precisely the participants an algorithmic tool is most likely
to misread, because their presentations are individually uncommon, multisystem, fluctuating and
frequently absent from the populations against which such tools are validated. For this community,
clinical override is not a marginal safeguard but a core protection against systematic
underestimation of need.
Subsection 9B(1) as written risks producing an artificially narrow assessment of functional capacity
that fails to capture real-world disability support needs. This may leave Australians with rare
conditions excluded from the scheme and only able to access mainstream supports that are
unsuitable for them.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
The risk: Subsection 9B(1) as written risks producing an artificially narrow assessment of
functional capacity that fails to capture real-world disability support needs. This may leave
Australians with rare conditions excluded from the scheme and only able to access mainstream
supports that are unsuitable for them.
Recommendation: Establish a rare and undiagnosed disease pathway for functional capacity
assessments, with mandatory specialist clinician input, recognition of fluctuating and episodic
disability, human override of algorithmic assessment outcomes, and assessor training in rare
disease.
We suggest this approach:
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is used across access, assessment and planning
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includes rare disease clinical expertise within any Technical Advisory Group convened under section 9B
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explicitly recognises fluctuating and episodic presentation of support needs links participants to specialist planners with continuity across plan cycles, building on
approaches used for other rare progressive neurological conditions
2.3 Tightened permanence and “appropriate treatment” criteria
Schedule 1, Part 8 Proposed sections 24(5), 25(1B) and 25A introduce a tightened permanence test requiring that a
person have undertaken all “appropriate treatment”, defined as treatment that is evidence-based,
can reliably be expected to materially improve, reverse or alleviate the impact of the impairment,
and is regularly undertaken in Australia. Subsection 25A(2) provides that treatment can be
considered appropriate regardless of whether the person can practically access it.
This formulation creates several problems for the rare disease community.
The language of “material improvement” is very open to interpretation for progressive conditions.
Treatment may slow deterioration, stabilise symptoms, or preserve existing function without
materially improving, reversing or alleviating the underlying impairment. For example, a person
whose use of allied health supports delays the loss of mobility, communication or swallowing
function may benefit significantly from treatment while still living with a lifelong and permanent
condition. It is unclear whether such supports will be considered treatments that may make a
“material improvement” therefore the condition be considered not yet permanent.
Subsection 25A(2) provides that treatment can be “appropriate” even where the person cannot
access it for reasons of cost or geography. This appears intended to narrow the current approach.
For people with rare disease, where the relevant specialist may exist only in a single interstate
centre this is not a marginal issue. The provision risks assessing permanence based on theoretical
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
treatment availability rather than real-world access. In a catch-22 situation, the very supports that
might be accessed through the NDIS, such as transport funding or funded disability support workers,
would be needed to access some health care services. Without acceptance into the scheme, these
treatments would remain inaccessible.
The risk: The proposed permanence and treatment criteria create a significant risk that the
existence of partial or geographically inaccessible therapies will be treated as evidence that a
rare genetic condition is not permanent, with the consequence that people with substantial
lifelong disability are denied access to the Scheme.
Recommendation: Amend the Bill to clarify that a diagnosed or clinically established rare
condition associated with lifelong and substantial reduced functional capacity should ordinarily
satisfy the permanence criterion, notwithstanding emerging, experimental, partially effective or
inaccessible therapies. The Bill should ensure that the availability of treatment that stabilises
symptoms, slows deterioration or partially alleviates functional impacts should not, preclude a
finding of permanence. Reasonable clinical and family decisions about treatment should not
affect eligibility, and the rule in proposed subsection 25A(3) should extend beyond strictly
medical contraindications.
2.4 Increased emphasis on evidence
The Bill does not specifically address participants living with significant and permanent functional
impairment(s) in circumstances where no genetic or other diagnosis has been confirmed, nor does it
explicitly recognise the evidentiary and assessment challenges associated with ultra-rare conditions.
The proposed reforms move toward more structured statutory criteria, evidentiary requirements
and assessment processes. Without explicit safeguards, this creates a significant risk that
participants with undiagnosed or ultra-rare conditions may experience disproportionate difficulty
demonstrating eligibility, support effectiveness or ongoing need.
This risk is particularly relevant in relation to proposed sections 25A, 34(1)(aa), 34(1E)–(1F) and 48A.
Proposed section 25A: “appropriate treatment”
Proposed section 25A may be extremely difficult to apply coherently in the context of undiagnosed
and ultra-rare conditions. Where a condition has not been identified, there may be no established
treatment pathway against which “appropriate treatment” can reasonably be assessed. For ultra
rare conditions, the available evidence may consist only of limited case reports, isolated clinical
observations or evolving experimental literature.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
The Bill provides little guidance regarding how permanence and treatment criteria should operate
where the relevant evidence base is absent or highly uncertain. In practice, the burden of resolving
this uncertainty may fall heavily on participants and families.
Proposed paragraph 34(1)(aa): supports arising “directly” from impairment
Proposed paragraph 34(1)(aa) would narrow the current “whole of person” approach by requiring
supports to arise “directly” from an impairment in relation to which the person meets the disability
access criteria.
This change creates particular risks for people with rare and complex conditions, who commonly
experience multiple overlapping neurological, cognitive, physical, sensory and psychosocial
impairments that do not operate independently of one another. For many participants, support
needs arise from the cumulative and interacting effects of seizure disorders, fatigue, communication
impairments, dysregulation, behavioural manifestations, developmental delay, chronic pain or
progressive functional decline. In practice, these impacts are often clinically inseparable.
Requiring a support to arise “directly” from a particular qualifying impairment risks imposing an
artificially narrow causal test that does not reflect the lived reality of complex disability. It may lead
to disputes about whether a support is attributable to one impairment rather than another, or
whether a support responding to combined functional impacts falls outside the scope of the
Scheme. This risks fragmenting supports for participants with multiple and interrelated disabilities.
Proposed subsections 34(1E)–(1F): evidence of support effectiveness
Proposed subsections 34(1E)–(1F) permit consideration of whether peer-reviewed and generalisable
evidence exists when determining whether a support is effective and beneficial.
For many ultra-rare and/or undiagnosed conditions, however, peer-reviewed evidence is structurally
limited. The rarity of the condition itself may preclude the existence of large studies, validated
interventions or established evidence hierarchies.
In these circumstances, participant-specific evidence, specialist clinical opinion and demonstrated
lived outcomes may represent the most reliable evidence available. Without explicit safeguards,
there is a significant risk that supports may be declined because the condition lacks an evidence base
that, by definition, could not reasonably be expected to exist.
Proposed section 48A: reassessment thresholds and timeframes
Proposed section 48A introduces a 90-day decision-making timeframe and requires evidence of
“significant and ongoing” change before reassessment occurs.
This framework is not well aligned with the evolving and often unstable nature of many undiagnosed
conditions. New symptoms may emerge progressively over time, or after a specific trigger such as an
episode of illness, while functional presentation may fluctuate substantially during periods of
investigation, regression or clinical deterioration.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
A fixed administrative reassessment framework may struggle to respond appropriately where
support needs evolve more rapidly than the Scheme’s reassessment processes.
Implications for undiagnosed and ultra-rare participants
Taken together, proposed sections 25A, 34(1)(aa), 34(1E)–(1F) and 48A each rely, to varying degrees,
on assumptions of diagnostic certainty, established clinical literature and identifiable treatment
pathways. These assumptions frequently do not hold for participants living with ultra-rare and/or
undiagnosed conditions.
The risk: Without explicit safeguards, there is a significant risk that the reforms will deepen
existing inequities experienced by participants whose disabilities are permanent and substantial,
but whose conditions remain clinically uncertain, poorly characterised or exceptionally rare.
Recommendation: Establish a dedicated access and planning pathway for participants with
undiagnosed or rare conditions, including flexible evidence requirements, recognition of
participant-specific and clinician-led evidence, and safeguards ensuring that the absence of peer
reviewed or generalisable evidence alone cannot justify denial of access or supports. These
assessment and planning processes should recognise the diagnostic uncertainty, evolving clinical
understanding and interacting impairments commonly experienced within the undiagnosed and
rare community.
2.5 Risk of narrow interpretation of cumulative and interacting support needs
Section 34(1)(aa) Proposed paragraph 34(1)(aa) requires that supports address needs arising “directly from” the
impairment or impairments that meet access criteria. This narrowing suggests the policy intent
appears to be tighter than the broader “arising from” test introduced in the 2024 amendments. As
discussed above, the risk is that, without safeguards, the drafting will be interpreted as requiring
supports to address each impairment in isolation, rather than as recognising the cumulative and
interacting nature of multisystem impairments.
For rare conditions this risk is particularly significant. A person with a single rare genetic syndrome
may have intellectual disability, communication impairment, motor impairment, behavioural
challenge, epilepsy, feeding difficulty and chronic medical complexity all caused by the same
underlying genetic variant. Supports for one manifestation routinely contribute to outcomes across
others: communication support may reduce behavioural escalation; behaviour support may improve
safety; mobility support may reduce fatigue; supervision may relate simultaneously to epilepsy,
cognitive impairment and sensory dysregulation. Rare disease does not fit neatly into single
impairment categories, single causal pathways, or isolated support functions.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Where access has been granted on the basis of one manifestation — for example, the intellectual
impairment associated with a genetic condition — a narrow reading of “directly from” invites the
NDIA to question whether supports for the motor or behavioural manifestations of the same
condition are within scope. The proposed wording may also narrow the current approach to
assessing cumulative and interacting disability needs recognised in recent case law and reforms.
The risk: Narrow interpretation of supports arising “directly” from impairment risks fragmenting
support for people with multisystem rare conditions leading to multiple impairments.
Recommendation: Retain whole-of-person assessment principles within support planning.
Amend 34(1)(aa) to ensure supports are not excluded merely because support needs arise from
the interaction of multiple impairments, secondary consequences of disability, or cumulative
functional impacts. People with multisystem rare and complex conditions should continue to be
assessed and supported holistically, recognising the cumulative and interacting nature of their
disability rather than through impairment-by-impairment logic.
2.6 Support determinations and caps
Sections 34A, 33(2EA)–(2EB) Proposed section 34A permits the Minister to reduce funding for groups of supports by legislative
instrument, including where the result is that a participant’s funding is insufficient to cover supports
assessed as reasonable and necessary. Proposed subsections 33(2EA) and 33(2EB) permit the
Minister to cap the maximum funding amount, the maximum intensity, and the maximum worker
to-participant ratio for specified supports. The Government has indicated the immediate use case is
the reduction of social and community participation supports and capacity-building daily activities.
These reforms appear intended to narrow the current approach under which the NDIS must fully
fund supports assessed as reasonable and necessary.
For many rare disease participants, the categories proposed for reduction are not extras. For a
participant whose disability progression is partially mitigated by structured engagement, sensory
regulation and supported routine, community participation supports are essential. Capacity-building,
for a person whose capacity is at risk of regression, is about preserving the developmental and
functional floor rather than building toward independence. 1:1 support is frequently essential for
safety — for example, for a person with no awareness of road safety, or seizure-related supervision
needs. Across-the-board reductions do not distinguish between participants for whom these
supports are discretionary and participants for whom they are clinically essential, and the Bill
provides no mechanism for individual exemption. The reforms operate through legislative
instrument and are not subject to merits review.
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Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
The risk: Across-the-board reductions and caps, applied without rare disease exemption and
without individual review, create a significant risk of reducing supports that are essential for
many participants with rare conditions. Foreseeable downstream consequences include
increased family burnout, increased crisis presentations, including to hospital, and progressive
social isolation.
The consequences of reducing community participation funding are not adequately captured by the
language of expenditure savings. One family in our community has consented to describe what this
funding makes possible, and what its loss would mean.
Charlie’s story: community participation
Charlie has a full and happy life. He loves drawing, action figures, and being around people.
Community Participation funding means Charlie can safely attend family gatherings, parks, birthday
parties, running around with his sister and her school friends. For a child who attends a School for
Special Purposes, those moments with mainstream kids aren’t extras. They’re how he learns that he
belongs in the world, and how other children learn that he does too.
Charlie is five years old, nonverbal, and has no safety awareness. Multiple services have declined his
enrolment in out-of-school hours care because of the risks associated with absconding and his
personal care needs. Taking Charlie to a park or a birthday party looks very different from what it
does for other five-year-olds. It requires continuous, active, skilled one-to-one support. Someone
who knows his profile, his movement patterns, his speed, and who can position themselves between
him and every safety hazard, every moment, without a break. A parent cannot do this safely while
also supervising another child, managing anything else, or for a single working parent, continuing to
hold employment. This is not a preference for funded support over parenting. It is what safe
participation requires.
A ministerial cut to community participation funding wouldn’t be a policy adjustment for our family.
It would significantly impact the pathway through which he can be part of his community. He is very
social and loves to play alongside other kids. The repercussions are far reaching for our family.
The alternative to community participation funding is not a saving. Without it, families need to find
in-home care workers under a different scheme to support their child during the hours they would
otherwise be in the community. The in-home care market is severely constrained. Many families
cannot find workers at all, and those who can face costs that significantly exceed what mainstream
out-of-school hours care or vacation care would cost for a child without disability. If a single parent
or two working parents cannot find care, they cannot work. That is not an abstract concern. It
affects household income, financial stability, and the capacity of families to maintain the kind of
settled, inclusive life that benefits the whole family. Community participation funding is not a
lifestyle extra. It is part of the economic foundation on which families like ours stand.
Charlie’s family
Page 14 of 19
Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Recommendation: Exempt participants with documented complex rare disease need from
across-the-board reductions. Any reductions must exclude supports that are sustaining function,
ensuring safety or preventing regression. Preserve individualised assessment of 1:1 and high
intensity supports.
2.7 Restrictions on unscheduled reassessment
Section 48A The Bill narrows the circumstances in which an unscheduled reassessment can be requested,
requires a more burdensome request process, and extends the NDIA’s decision-making timeframe
from 21 days to 90 days. The Explanatory Memorandum confirms that a participant who runs out of
funding early but whose support needs have not changed significantly will be refused.
For rare and progressive disease, this combination presents serious risks. Significant changes in
support need may follow status epilepticus, a regression episode, a new medical complication, or
the involvement of a new body system in the condition’s progression — for example:
the emergence of respiratory complications in a condition that had otherwise been
primarily neurological
the emergence of neurological and cognitive impacts in a condition that has otherwise been
primarily sensory
The Bill provides no mechanism by which a significant change such as these compels an urgent
response from the Agency.
The risk: The combination of narrowed criteria, additional procedural barriers and an extended
90-day decision timeframe creates a significant risk that participants with rare and progressive
conditions will deteriorate during the period in which their plan is under review. The participant
may deteriorate substantially, be stuck in hospital, or experience preventable crisis.
Recommendation: Introduce a clinical deterioration trigger requiring an urgent reassessment
within 28 days where treating clinicians document a significant change in condition.
2.8 Resetting plans and no rollover of unspent funds (proposed s 50A)
Under the Bill, plans will have a legislated end date and unspent funds will not carry over into the
renewed plan. For most participants, this may be defensible. For rare disease participants, it
disproportionately penalises factors outside their control.
Page 15 of 19
Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Rare disease underspend rarely reflects unmet need being absent. It reflects, most commonly:
inability to find a therapist with relevant expertise (for example, dysarthria speech therapy for
FOXP1 syndrome, or AAC implementation for non-verbal participants); inability to recruit and retain
support workers with seizure or behaviour support skills; periods of hospitalisation during which
home and community supports are suspended; or delays in assistive technology and home
modification procurement where one-off funding is approved but the equipment is not yet
delivered. A blanket no-rollover rule reads each of these as evidence that the funding was not
needed.
The risk: A uniform no-rollover rule penalises rare disease families for circumstances they cannot
control.
Recommendation: Permit rollover where underspend is attributable to documented external
factors, including workforce shortage, hospitalisation, provider unavailability or pending
procurement of approved supports.
2.9 Expanded presumption of parental responsibility
Sections 34(1G)–(1H) Genetic Alliance Australia shares the concerns raised by other rare disease organisations regarding
the proposed amendments to section 34(1). The provisions create a presumption that parents are
responsible for substantial care including ‘supervision, personal care, transport, emotional support
and behavioural support’, without explicitly benchmarking this presumption against the level of care
ordinarily required for a child of the same age without disability.
A 16-year-old with a rare syndrome may require continuous behavioural supervision, full assistance
with personal care, structured emotional regulation support and behavioural intervention well
beyond anything required by a typically developing 16-year-old. The Bill, as drafted, invites the
interpretation that this care is ordinary parenting — risking the reclassification of disability-related
supports as ordinary family responsibility, and transferring cost from the Scheme to families who are
already disproportionately exposed to financial, psychological and workforce-participation impacts.
More broadly, several elements of the proposed reforms appear to assume a level of availability,
continuity and responsiveness within mainstream, informal and community supports that often does
not exist for people living with rare and ultra-rare conditions.
The risk: families of children with rare and complex conditions face a significant risk of disability
related supports being reclassified as ordinary parenting. Mainstream services or informal
networks are relied upon to substitute for funded supports, the result for many rare disease
families is not a transfer of care to an available alternative, but a real risk to family function and
physical safety.
Page 16 of 19
Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Recommendation: Amend the Bill to explicitly benchmark all categories of presumed parental
responsibility against the care ordinarily required for a child of the same age without disability.
2.10 Plan suspension and revocation for participants who are not contactable
Sections 40A, 30(1A) Proposed section 40A authorises the CEO to suspend a participant’s plan where the CEO has made
“reasonable attempts” to contact the participant under sections 36 or 50 and the participant is not
contactable. Proposed subsection 30(1A) authorises revocation of a person’s participant status
where their plan has been suspended under section 40A for at least 90 days. The Bill does not
specify what constitutes a “reasonable attempt”, does not require contact methods to meet a
participant’s identified accessibility needs, and does not require the CEO to consider whether
suspension or revocation would place the participant at risk before exercising the power.
People who are uncontactable through standard channels are not a random cross-section of the
participant population. They include people with intellectual disability and communication
impairment, people experiencing acute medical events or prolonged hospitalisation, people whose
primary carer is unwell or absent, people whose housing or contact details are unstable, and people
whose conditions cause periods of significant cognitive or behavioural deterioration. Each of these is
over-represented in the rare and undiagnosed disease community.
The risk: The consequences of suspension and revocation are serious: for a person whose plan is
the framework around which their support, therapy, supervision and safety is organised, the loss
of that framework is itself a safety event.
Recommendation: Amend proposed sections 40A and 30(1A) to specify minimum standards for
“reasonable attempts” to contact a participant, require contact methods to meet accessibility
needs, and require the CEO to consider risk before suspending or revoking. Build in proactive re
engagement rather than defaulting to revocation.
2.11 Expanded Ministerial power, automated decision-making and limited review rights
The Bill significantly expands Ministerial power across several domains: setting access criteria,
setting prices, making support determinations that reduce funding, capping support quantum and
ratios, and (under Schedule 5, item 1) making rules that modify the operation of the NDIS Act for up
to 12 months. Many of the resulting decisions are not subject to merits review. The Bill also
authorises automated decision-making, with safeguards that are partial relative to best practice in
administrative law.
Page 17 of 19
Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
For people with rare and undiagnosed conditions, the combination is particularly difficult. Rare
disease participants are the most likely to fall outside whatever standard logic or datasets an
automated system is calibrated against, the most likely to require individualised consideration that
delegated instruments cannot accommodate, and the least equipped — in time, energy and system
literacy — to advocate for themselves against decisions that have no review pathway.
The risk: The expansion of broad delegated rule-making powers and automated decision-making,
without commensurate strengthening of merits review and impact analysis, creates a significant
risk that participants whose circumstances do not fit the standard case will be disadvantaged.
Rare disease participants are over-represented in this category.
Recommendation: Strengthen safeguards: independent review of support determinations and
caps; mandatory rare disease impact analysis on delegated instruments; and meaningful merits
review of all access and planning decisions.
Reinstatement of a pre-Tribunal independent expert review mechanism could help to manage
the increased volume of disputed decisions these reforms will generate. In this review, matters
are referred to an expert independent of both the participant and the NDIA before proceeding to
the Administrative Review Tribunal. The NDIA’s own evaluation of this approach found that
participants and the sector preferred it to the former Administrative Appeals Tribunal process,
and that the average cost to review a case was lower.
- Conclusion Genetic Alliance Australia supports the goal of a financially sustainable NDIS — a precondition for
the Scheme being available to future Australians who will rely on it, including the next generation of
children born with rare genetic conditions. Attempting to achieve this by excluding people who are
difficult to standardise, however, will not achieve sustainability. It will result in the shifting of cost
and harm — onto families, onto state services, onto emergency departments, and onto the lives of
people who needed support and did not receive it. The rare and undiagnosed disease community is
the population on whom that cost and harm falls most heavily.
The rare and undiagnosed disease community does not seek exemption from accountability,
consistency or sustainability measures. Rather, we seek implementation frameworks capable of
accommodating the complexity of our lives, the diagnostic uncertainty we live with and our realities
of lifelong multisystem disability.
The reforms can be made compatible with rare disease, but only if the Bill is amended to provide
explicit pathways, exemptions and safeguards of the kind set out in this submission. Implementation
alone will not close the gap.
Page 18 of 19
Submission 813
Genetic Alliance Australia | Submission on NDIS Amendment (Securing the NDIS for FutureGenerations) Bill 2026
Genetic Alliance Australia asks the Committee to recommend the amendments necessary to ensure
that Scheme responds to some of Australia’s most vulnerable populations.
Yours sincerely,
Emma Bonser
Chief Executive Officer
Genetic Alliance Australia
We acknowledge the significant contributions made to this submission by:
Parents of children and adults living with rare genetic conditions
Health care team members, including specialists who provide care for people with rare genetic conditions
Mito Foundation
SATB2 Connect
Disability Rights Connect
Pura Foundation Australia
Other Rare Disease Organisations not explicitly named
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