Submission 3328 — Mr & Mrs Andrew and Erin Garde — NDIS Future Generations Bill | External submission

Committee Secretary

Senate Standing Committees on Community Affairs

PO Box 6100

Parliament House

Canberra ACT 2600

29 May, 2026

Dear Committee Secretariat,

We are Erin and Andrew Garde, writing this submission as the parents and primary carers of our eight year-old daughter, who has been a NDIS participant since February 2025.

According to the Notice of Impairments she received when given access to the NDIS, our daughter meets disability criteria for impairments in the Cognitive and Neurological domains. Globally, her clinical needs are complex: she has a diagnosis of Autism Spectrum Disorder (ASD), Level 2 (requiring substantial support); severe sensory processing challenges; an established history as a “problem feeder”; and is currently undergoing formal assessment for Avoidant Restrictive Food Intake Disorder (ARFID) with a specialist dietitian.

NDIS support has fundamentally changed our daughter’s life. Thanks to consistent therapy and daily living skills capacity building, she goes to a mainstream school comfortably, finds joy in activities with her peers, and can better communicate her emotions and needs. We are deeply grateful for this scheme and do not take her funding for granted.

Because we know firsthand how vital this scheme is, we completely agree that the NDIS must be made financially sustainable for future generations. However, we are do not consent to the amendments this Government is trying to pass in the name of financial sustainability of the scheme. Many of these changes are arbitrary, cruel, and completely miss the mark. They punish families instead of fixing the system, and do not align to the obligations Australia has to disabled people as signatories to the UNCRPD.

As such, we have compiled this submission to clearly explain the significant and irreconcilable concerns we have about some of the proposed amendments and to offer practical, fair recommendations for change based on our lived experience with our daughter.

Thank you for your consideration of our submission,

Erin and Andrew Garde

Statement of specific concerns about proposed amendments to the NDIS Act (Commonwealth of Australia, No. 20, 2013)

Schedule 1: Access and planning measures a. Part 1- Defining functional capacity i. Proposed amendments of concern
Creation of a new baseline definition of Functional Capacity (FC) by the Minister that does not align to the international evidence-base or best-practice models and Functional Capacity Assessments (FCAs) to determine eligibility for NDIS support will ignore participants’ personal environment and personal circumstances, even for the most vulnerable of people.
Powers allowing the Minister to create definitions, methods of assessment, and thresholds of FC as and when deemed necessary.

ii. Objections The proposed amendment to the definition of Functional Capacity (FC), lacks both

procedural  specificity  regarding assessment and transparency concerning  eligibility

thresholds. Crucially, the revised definition diverges from international, evidence-based best practice models of disability support. In fact, the new definition of FC in the proposed amendment specifically states:

“… a person’s FC is their ability to undertake an activity without assistance from other people, assistive technology or modifications; and in a context that excludes the impact of the person’s environment and personal circumstances.”

The proposed definition of Functional Capacity (FC) is highly medicalised, deficits-based, and restricted to a rigid, single-environment “snapshot” assessment. Consequently, it fails to capture a person’s functional capacity across diverse settings—such as workplaces, educational institutions, or the broader community. Furthermore, this static approach cannot account for a participant’s capacity when optimized by assistive technologies, human supports, and reasonable accommodations. Crucially, it overlooks the fluctuating nature of many disabilities, which vary dynamically based on personal and environmental contexts. Rather than adopting a holistic, strengths based, and person-centred view of an individual’s unique circumstances, this revised definition operates as a blunt instrument that reduces complex human needs to isolated deficits.

In  practice, a blunt  definition or assessment method  fails to capture  fluctuating,

environment-dependent disabilities. For example, our daughter’s multi-disciplinary team (OT, psychologist, and feeding therapist) found her functional capacity varies significantly

across  different  settings.  At home—a  familiar,  safe  environment  with  tailored

accommodations—she is able to eat her highly restricted ‘safe’ foods. However, this does not mean her neurological feeding difficulties are resolved. Due to recent schedule changes and environmental stressors, she has not eaten a single thing at school for the past two weeks. A rigid assessment framework would completely miss these critical, real-world fluctuations in functional capacity.

Furthermore, the proposed amendment grants the Minister unilateral authority to establish new definitions, assessment methodology, and eligibility thresholds via legislative instruments. The bill fails to provide robust mechanisms for parliamentary oversight, independent evaluation, or pilot testing before these changes are implemented. This absolute lack of transparency, coupled with the absence of a formal right of appeal, creates

severe  structural  vulnerabilities  with  no  built-in  safeguards  against  unintended

consequences. While the government has consistently emphasized its positive intentions,

subjective  goodwill  carries no  legal or  structural  weight.  Until  clear,  transparent

accountability frameworks are written into the primary legislation, these assurances offer no protection to vulnerable participants.

iii. Recommendations We therefore respectfully ask the definition and methods of assessment used to determine a person’s FC, and the thresholds to determine eligibility for NDIS support remain aligned to international evidence-based, best practice models of disability support.

We also respectfully ask that any new definitions, assessment methods, and eligibility thresholds for NDIS support be subject to the same strict oversight, consultation, and transparency expected of all taxpayer-funded programs. Furthermore, these changes must ensure procedural fairness, regular evaluation, independent review, and robust rights of appeal.

b. Part 2- Limit unscheduled plan reassessments i. Proposed amendments of concern

Stricter and more rigid rules to reduce frequency and amount of “unscheduled” plan reassessments.

ii. Objections While we agree participants or their legal representatives must always control when to seek

a plan reassessment,  tighter  restrictions on  so-called “un-scheduled” reviews are

problematic. Restricting access to these reviews to significant, ongoing, or unanticipated changes in circumstances wrongly assumes a participant’s environment is always stable. It also ignores how some disability impacts naturally fluctuate. Removing other valid reasons for plan reassessments at other times could create a significant bottleneck and delay to changes in plans. Participants risk being locked into inadequate plans until their functional capacity so severely deteriorates it finally meets the higher proposed threshold for an plan reassessment.

Furthermore, the logic and reasoning Minister Butler used to justify the proposed amendment to plan reassessment is fundamentally flawed. During his National Press Club of Australia presentation (22 April, 2026), Minister Butler stated:

“….one in five plans had an unscheduled reassessment, resulting in an average increase of 20% in plan value, a huge driver in planning growth.”

Minister Butler’s commitment to reduce unscheduled plan reassessments by tightening request criteria completely ignores the real-world consequences for participants. These

unscheduled requests happen because initial plans fail to provide adequate funding for individual needs, not because they are driving the NDIS budget blowout. Stripping participants of the right to request a reassessment when their funding falls short leaves vital support needs unmet, risks severe FC decline, and is both procedurally unfair and unnecessarily cruel.

In our daughter’s case, we have first-hand experience in needing to request an unscheduled reassessment, because her first plan did not have adequate funding to meet her feeding therapy needs. Her qualified feeding therapist determined she required fortnightly feeding therapy—totalling 26 hours to the value of $7,371.62 over the plan’s duration—to manage the direct impact of her neurological impairment on her eating capacity. This therapy is critical for her to consume a varied diet sufficient for her growth, development, and nutritional needs.

Despite this evidence, the NDIA omitted feeding therapy funding from her initial plan. The NDIA stated that further evidence was needed to satisfy the “value for money” and “effective and beneficial” funding criteria. To address this, we funded a Functional Capacity Assessment (FCA) through her feeding therapist and secured a supporting report from her paediatrician, and submitted these documents for an Internal Review to demonstrate that the criteria are met.

The Internal Review took two months to complete and upheld the original decision to deny funding for our daughter’s feeding therapy. Despite significant evidence to the contrary from her qualified feeding therapist and paediatrician, the NDIA maintained that the support failed to meet the “value for money” and “effective and beneficial” criteria. We disagreed with this outcome, and lodged an application for External Review with the Administrative Review Tribunal (ART) on 6 May 2025.

The External Review process was long, arduous, adversarial, and a profound waste of time and public resources. Spanning from 6 May 2025 to 10 March 2026, the dispute required four case conferences and an additional round of assessments from our daughter’s feeding therapist, occupational therapist, psychologist, and paediatrician.

While the ART ultimately ruled in our daughter’s favour and ordered the NDIA to fund the therapy, the systemic cost was staggering. The NDIA spent a conservative estimate of $60,000 to $80,000 on legal representation alone—all to fight against a vital $7,371.62 funding request.

The financial “blowout” from unscheduled plan reassessments is not driven by participants making excessive requests. It is driven by an inefficient bureaucratic cycle. The crisis begins because initial NDIS plans fail to cover basic, expert-certified needs. When participants appeal, the NDIA routinely rejects them, forcing families to escalate the battle to the Administrative Review Tribunal (ART).

The NDIA then spends months or years spending taxpayer dollars on legal representation— frequently quadrupling the cost of the initial support request—only for the ART to rule in the participant’s favour anyway. Participants are not exploiting the system; they are surviving it. Arbitrarily restricting access to plan reassessments will never fix the NDIS

budget, because it completely ignores the structural failure that forces families to fight for fair funding in the first place.

iii. Recommendations We therefore request NDIS participants retain the unrestricted right to request a plan

reassessment at any time  if they believe their funding  is insufficient to meet their

professionally determined, evidence-based clinical needs.

c. Part 4- Support determinations i. Proposed amendments of concern

Powers allowing the Minister to issue legislative instruments to reduce the funding component amount for specified groups of supports by an arbitrary percentage as and when deemed necessary for “financial sustainability” of the NDIS.

ii. Objections

Forcing  such  reductions  in  participants’  budgets  through  top-down  ministerial

determinations ignores the actual clinical needs of participants. Removing the funding does not remove our daughter’s neurological or cognitive impairments, nor does it remove her support needs directly related to her ASD diagnosis.

Furthermore, one of the first suite of cost-cutting measures Minister Butler has committed to if these amendments are passed, is a blanket and arbitrary 10% reduction in participants’ Improved Daily Living Skills budget and a 50% reduction to Social, Civic, and Community Participation budget, irrespective of the nature and impact of participants’ disabilities on their FC. These proposed cuts appear to be an unsubstantiated cost-cutting exercise. They lack an empirical evidence-base and provide no legal pathways for participants to seek a review or reversal. Removing funding does not eradicate the underlying clinical need; it simply shifts the burden. Participants are forced to either go without essential services or self-fund the deficit.

For our family, this will create an estimated shortfall of $1,500 over the life of our daughter’s current plan. We will then be left with an impossible dilemma: which of her fortnightly therapies—Occupational Therapy (OT), psychology, or feeding therapy—do we cancel and when, to avoid running out of funding? How do we ration these essential services without causing the developmental stagnation or skill regression commonly observed in Autistic children when interventions are insufficient or interrupted (see for example: Mounzer, 2026)?

iii. Recommendations We respectfully ask decision-makers to remove the proposed budget cuts from the amendment. Specifically, we oppose:

The 10% arbitrary cut to the Improved Daily Living Skills budget.
The 50% drastic cut to the Social, Civic, and Community Participation budget. Reducing these core funding areas will significantly harm participant independence and isolate vulnerable individuals from their communities.

We also respectfully ask that any reductions to funding in the name of protecting the financial sustainability of the NDIS satisfy the following criteria:

Evidence and Best Practice: Funding decisions must be rooted in clinical evidence and not be arbitrary cost-cutting.
Individual Focus: Funding decisions must adapt to individual participant needs and FC requirements.
Expert Oversight: Funding decisions must not ignore assessments made by qualified, trained, and experienced allied health professionals.
Transparency, scrutiny, procedural fairness and right of review: Funding decisions must be subject to the same strict oversight, consultation, and transparency expected of all taxpayer-funded programs. Furthermore, these changes must ensure procedural fairness, regular evaluation, independent review, and robust rights of appeal.

d. Part 5- Plan renewal i. Proposed amendments

Automatic plan renewal or rollover without the need for reassessment of participants’ funding needs when plans end.
Unspent funds no longer rollover to new plans. ii. Objections While we acknowledge measures to ensure continuity of support between plan cycles are commendable, the indiscriminate application of automatic renewals is highly problematic. Automatically renewing a plan with identical funding and support allocations—without a holistic review of the participant’s changing circumstances—fails to trigger a “reviewable decision” threshold under the Act. Consequently, participants are stripped of their right to appeal the adequacy of the plan. When combined with tighter restrictions on requesting unscheduled plan reassessments, this amendment risks locking vulnerable individuals into insufficient funding structures for extended periods, leaving them with no viable legal recourse.

Prohibiting the rollover of unspent funds significantly increases the risk of participants experiencing critical funding shortfalls during subsequent plan cycles. Amidst a broader cost-of-living crisis and acute workforce shortages across the allied health sector, the

assumption  that  under-utilised  funding  indicates  a  reduction  in  clinical need  is

fundamentally flawed.

Our family’s experience directly illustrates this systemic reality. A substantial portion of our daughter’s Improved Daily Living Skills budget went unspent during her initial plan cycle. This under-utilisation was not caused by exaggerated initial assessments or a decrease in her support needs. Instead, it was the direct result of workforce instability; our daughter lost two psychologists, one occupational therapist, and one feeding therapist to career transitions within a single year. We were subsequently forced onto extensive waiting lists to secure replacement clinicians. The clinical necessity for the funding remained constant, but systemic workforce shortages entirely restricted our capacity to utilise it.

iii. Recommendations We therefore respectfully ask that any plan renewal policy satisfies two core criteria:

Mandatory Reviews: Plans must not be automatically rolled over without a formal check to ensure the funding still matches the participant’s real-world needs.
Protected Rights: The act of renewing a plan must remain a reviewable decision, safeguarding a participants’ fundamental right to appeal if the funding is inadequate.

We therefore respectfully request that decisions regarding the rollover of unspent funds be based on individual context rather than blanket rules. Four core criteria should be evaluated:

The Root Cause: Whether funds were left unspent due to reduced needs or an inability to access services (e.g., losing staff or facing long waitlists).
Current Circumstances: The participant’s active functional capacity and environmental challenges.
Ongoing Clinical Need: The risk of regression if vital funds are stripped away. e. Part 5- Reasonable and necessary supports i. Proposed amendments of concern
Powers that will allow the Minister to set mandatory maximum limits on funding by legislative instrument, as and when deemed necessary. This can be done at the Minister’s discretion via three capping mechanisms:
Maximum funding amounts for specific supports.
Maximum intensity (e.g., capping the number of hours or frequency of a service).
Maximum worker-to-participant ratios (e.g., limiting 1-on-1 care if group care is deemed sufficient).

ii. Objections We maintain that the three proposed capping mechanisms must remain under the strict purview of qualified allied health professionals who possess the requisite training, clinical expertise, and firsthand knowledge of the participant. It is entirely inappropriate for a Minister—lacking formal clinical qualifications and unfamiliar with a participant’s unique functional capacity—to unilaterally dictate funding allocations, the frequency or intensity of support delivery, or whether a participant should be transitioned from individualised 1:1 care to group models. These complex determinations require rigorous clinical assessment, not blunt, centralized administrative decrees.

Our daughter’s clinical profile directly demonstrates the danger of centralized capping

mechanisms.  All three qualified  allied health professionals on her care team have

independently determined that she requires 1:1 sessions on a strict fortnightly schedule to safely meet her disability-related needs. Clinical evidence shows that increasing this frequency risks therapeutic burnout, while decreasing it triggers immediate developmental stagnation and skill regression. Furthermore, her treating clinicians have explicitly stated that group support delivery is entirely inappropriate and counterproductive, as the sensory and social environment would overwhelm her and prevent meaningful progress. We defer entirely to the evidence

based recommendations of these qualified practitioners over a Minister applying arbitrary, uniform caps as a fiscal exercise.

iii. Recommendations We respectfully ask that any changes to total funding limits, support frequency and intensity, or maximum support worker ratios satisfy the following criteria:

Evidence and Best Practice: Decisions must be rooted in clinical evidence, not arbitrary cost-cutting.
Individual Focus: Models must adapt to individual participant needs and functional capacity requirements.
Expert Oversight: Funding rules must respect assessments made by qualified, trained, and experienced allied health professionals.
Transparency, scrutiny, procedural fairness and right of review: Funding decisions must be subject to the same strict oversight, consultation, and transparency expected of all taxpayer-funded programs. Furthermore, these changes must ensure procedural fairness, regular evaluation, independent review, and robust rights of appeal.

f. Part 8 Tightening meaning of permanence to reduce access where an impairment can be treated

i. Proposed amendments of concern

New definition of “permanent disability”, where a participant’s impairment(s) are not, or likely to be permanent unless three criteria are satisfied:

i. the person has undertaken all appropriate treatment for the impairment or impairments (if any); and ii. any other treatment is unlikely to materially improve, reverse, or alleviate the impact of, the impairment or impairments; and iii. the impairment or impairments are likely to persist for the person’s lifetime.

Restricting the definition of “inaccessibility” of treatments deemed appropriate for the participant’s impairment(s) to medical exemptions only.

ii. Objections Mandating that participants exhaust all “appropriate treatments” available in Australia to prove disability permanence is structurally and clinically untenable. For a participant like our daughter, who has a diagnosis of Autism Spectrum Disorder (ASD) with Level 2 support needs, the amendment fails to define who holds the authority to determine which treatments must be exhausted. Historically, poorly regulated interventions have caused severe harm; for example, a growing body of peer-reviewed research demonstrates that compliance-based interventions like Applied Behaviour Analysis (ABA) cause long-term trauma and psychological distress for Autistic individuals (see for example: Anderson, 2023). Furthermore, the broader landscape contains highly varied, contradictory, and unevidenced methodologies—ranging from heavy antipsychotic medication and nutrient therapies to alternative practices like homeopathy.

Forcing families to subject children to a gauntlet of interventions to “prove” a lifelong, permanent neurodevelopmental condition with no cure is fundamentally flawed. This requirement directly breaches Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), specifically stripping participants of their fundamental right to choice, control, and bodily autonomy over the interventions they receive.

Furthermore,  restricting the exemptions  for not undergoing mandated treatments

exclusively to medical grounds deliberately ignores a participant’s personal and financial realities. The proposed amendment explicitly dictates that geographic isolation and financial hardship—such as an inability to afford a treatment or living too far away from a

provider—are no  longer  valid  justifications.  This mechanism  establishes a deeply

inequitable framework that sets vulnerable participants up for systemic exclusion from NDIS funding.

Penalising individuals for market failures, poverty, or regional service gaps completely undermines the foundational principles of the NDIS. It creates a discriminatory barrier where access to essential disability support is dictated by wealth and postcode, directly violating a participant’s right to live an independent, meaningful life.

iii. Recommendations We respectfully ask the proposed new definition of “permanent” disability and the mandatory requirement for participants to exhaust all available treatment options prior to receiving NDIS support be completely excised from the amendment. Access criteria must remain focused on functional impact rather than state-mandated medical compliance.

References

Anderson, L. K. (2023). Autistic experiences of applied behavior analysis. Autism, 27(3), 737-750. https://doi.org/10.1177/13623613221118216 Commonwealth of Australia. (No. 20, 2013). National Disability Insurance Scheme Act. Canberra: Commonwealth of Australia. Mounzer, W. (2026). Sustained autism outcomes eight years after early intensive behavioral intervention in a conflict-affected low-resource setting: A longitudinal follow-up study. Research on Child and Adolescent Psychopathology, 54(2), 39. https://doi.org/10.1007/s10802-026-01438-x