Submission 2003

SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by: Parent and Guardian of an NDIS Participant Date: May 2026

Executive Summary This submission is made by the parent and guardian of an 11-year-old NDIS participant with a confirmed diagnosis of a rare permanent, multi-system genetic condition affecting less than 1 in 1,000,000 people – and has other confirmed disabilities which result in interacting impairments. The child currently accesses reasonable and necessary supports which consider her impairments as impacts on a complete and complex individual. A sustainable scheme is in the long-term interests of this child and every future participant. However, the Bill as drafted contains provisions that will directly reduce support for individuals with complex, rare, and permanent disabilities, while simultaneously creating sweeping Ministerial and NDIA powers that will be exercised through rules and determinations that have not yet been written or consulted upon. The Committee is being asked to grant those powers on the basis of stated intent alone. The Committee should also consider whether the NDIS is actually being abused by participants or whether taking care of vulnerable people in our community is actually expensive and the responsibility of all who chose to live and contribute to our community. Fiscal sustainability is not the only measure by which governments and society should make decisions. Eight concerns are raised in this submission:

• Functional capacity assessment contradiction: The Bill assesses participants as if they have no informal supports, then uses the presence of those supports to reduce funding. This child’s parent provides substantial daily care that will be used against the family.
• The word “directly” and cascading disability: The genetic condition produces its effects through multi-step causal chains. The new “directly” causal test — without any published definition — risks fragmenting this child’s support at every link in those chains, including psychology, speech therapy, and community participation.
• Reassessment restrictions: The new threshold requiring proof of substantial deterioration before reassessment is directly contradicted by the early

Submission 2003

intervention principles in the same Act. At age 11, approaching secondary school and puberty, this child faces rapid and predictable changes in support needs that the new framework cannot respond to in time.

• Automatic plan renewal: A primary school plan auto-renewed into a secondary school context will be structurally misaligned from day one, with no mechanism to correct it without clearing the new reassessment threshold.
• Ministerial budget reductions: The announced 50% reduction in community participation funding directly threatens this child’s hearing and communication support group. The power to make these reductions is unchecked, does not expire, and cannot be disallowed by Parliament. The Bill explicitly permits reductions even where a participant’s reasonable and necessary supports are no longer fully funded.
• Sweeping powers without published rules: The Budget Method, Support Needs Assessment Tool, definition of “directly,” automated decision-making rules, pricing determination criteria, and future support determination powers all exist in the Bill without corresponding published rules. Parliament is being asked to grant these powers before the disability community can assess their impact. This submission urges the Committee to recommend the Bill not pass until those rules are published and genuinely consulted upon.
• Permanence and “treatable” impairments: Several of this child’s co-occurring conditions — including sensorineural hearing loss, and urinary incontinence — risk being characterised as “treatable” without published guidance distinguishing between conditions that are managed and conditions that are resolved.
• Displacement to other service systems: Continence products, psychology, audiology, and vision supports risk being redirected to mainstream systems with funding caps and session limits that are inadequate for a child with this complexity of need. The full submission that follows sets out the basis for each of these concerns in detail, with specific reference to the Bill’s provisions and their application to this child’s circumstances. Whilst this submission considers the effect of the Bill’s provisions on this child, the application of the provisions will negatively impact many vulnerable participants, particularly those with complex or rare conditions.

Submission 2003

Introduction

I am the parent and guardian of an 11-year-old child who is a current NDIS participant. My child has a confirmed diagnosis of a rare genetic condition. This is a permanent condition with no cure. It affects multiple body systems simultaneously and gives rise to a complex, interdependent set of functional impairments.

I am making this submission because I have read the Bill and I am deeply concerned that, taken together, its provisions will significantly reduce my child’s funded supports, remove the human review processes that have been essential to correcting planning errors, and vest enormous discretionary power in the Minister and the NDIA through rules and determinations that have not yet been written, let alone consulted upon.

I support a sustainable NDIS. I support measures to stop fraud. I want this scheme to exist for my child’s lifetime and for future generations. But sustainability cannot be achieved by reducing the supports of children with complex, permanent, and rare disabilities while leaving the structural problems in NDIA planning, compliance, and governance unaddressed.

About the Participant

My child is 11 years old. Their primary diagnosed condition is a rare genetic mutation. This condition causes, or coexists with, the following permanent impairments:

• Tall stature with associated musculoskeletal implications
• Developmental Coordination Disorder (DCD) and low muscle tone (hypotonia)
• Speech and language delay
• Mild intellectual disability
• Sensorineural hearing loss (hearing aid fitted)
• Attention Deficit Hyperactivity Disorder (ADHD)
• Urinary incontinence and recurrent urinary tract infections
• Intermittent strabismus (glasses fitted, under active ophthalmology review)

We were not aware of the genetic condition until age 7. Hearing loss and development delay were identified progressively from age 2, but the underlying cause was originally unknown. There are only 70 to 100 people diagnosed with this condition in the world. Due to the low global incidence of this condition, the impairments caused and the impact on this child are still unknown.

My child currently accesses the following NDIS-funded supports:

• Physiotherapy
• Occupational therapy
• Speech therapy
• Psychology

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• Hearing and communication support group
• Continence products

This genetic syndrome is a rare, multi-system condition, and not well understood by many practitioners. My child’s supports are not excessive; they are the minimum required to enable a child with this combination of impairments to develop, learn, communicate, and participate in daily life.

Concern One: The New Functional Capacity Assessment

Schedule 1, Part 1 of the Bill introduces a new definition of functional capacity. For the first time, this will be assessed without reference to assistive technology, home modifications, support from other people, or the person’s environment and personal circumstances. In principle, assessing the true underlying disability rather than a supported version of it could produce a more accurate picture of need. However, the Bill creates a direct and irreconcilable contradiction. The functional capacity assessment will be conducted as if my child has no family, no hearing aid, no glasses, and no current supports. But Schedule 1, Part 6 requires the planning decision to account for the contribution of informal carers and family. The assessment treats my child as if we do not exist. The funding decision treats my child as if we do everything. As the parent of a child with complex needs, I provide substantial daily support: continence management, hearing aid maintenance, medication, and coordination of seven separate therapy streams. This is invisible labour that the Bill will use to justify reducing funded support, while simultaneously claiming the assessment does not take it into account. I ask the Committee to:

• Ensure that where a child’s functional capacity assessment reveals genuine need, the funded plan reflects that need rather than the care burden being shifted to parents

Concern Two: The Word “Directly” and Cascading Disability

Schedule 1, Part 3 changes the test for funded supports from arising “from an impairment” to arising “directly” from an impairment. The Government has provided no definition, no guidance, and no published rules explaining what “directly” means in practice. This provision of great concern to me. My child’s disability does not produce its effects in a straight line. The EZH2 mutation produces effects through cascading chains of cause and consequence:

Submission 2003

• Physical chain: Hypotonia and DCD create difficulties with self-care, dressing, writing, and physical participation at school
• Cognitive chain: Intellectual disability cognitive processing difficulties create learning difficulties which create frustration and anxiety which create the need for psychology support
• Hearing chain: Sensorineural hearing loss creates communication barriers which create social isolation which creates anxiety and self-esteem difficulties requiring psychology support
• Continence chain: Urinary incontinence creates anxiety about community participation and social settings, impacting the very community participation supports now subject to a proposed 50% budget reduction

Under the new “directly” test, each link removed from the primary impairment becomes a potential point of denial. The psychological impacts of living with hearing loss, incontinence, coordination difficulties and intellectual disability at age 11 are real and clinically documented — but they are not “direct” in a narrow causal sense. The Committee should note that no published guidance exists on what “directly” means. When this Bill passes, planners and automated systems will be required to make this determination, but with no rules to guide them. For a child with a rare syndrome that many planners have never encountered, the risk of inconsistent and incorrect decisions is very high. I ask the Committee to: - Require a published definition of “directly” before this Bill passes, with clear examples of multi-step causal chains - Ensure that secondary conditions caused by living with a primary disability — including mental health, anxiety, and social isolation — remain fundable - Ensure that the rarity of a diagnosis does not disadvantage a participant in the application of this test

5. Concern Three: Restrictions on Plan Reassessments Schedule 1, Part 2 restricts unscheduled plan reassessments to circumstances where a participant can demonstrate “a significant and ongoing change in functional capacity that substantially reduces the ability to perform daily activities.” The response window increases from 21 days to 90 days. My child is 11 years old and will turn 12 during the life of the next plan. This means they are entering the period of greatest transition in their life to date: moving from primary to secondary school, puberty, increasing social complexity, and an entirely new environment without the structured, therapeutic, familiar setting that primary school has provided.

The Bill’s own early intervention framework says: act before deterioration occurs. The reassessment framework says: prove substantial deterioration before we act. These two principles cannot coexist in the same piece of legislation for a child approaching adolescence with multiple complex impairments.

Submission 2003

Specific scenarios of concern for this child include:

• School transition: Moving to secondary school removes the scaffolding of a therapeutic primary school environment. Support needs will increase, but the disability itself has not changed. The Bill excludes environmental factors from assessment, so this change may not meet the threshold for reassessment.
• Puberty and continence: Hormonal changes frequently affect urinary continence. Documenting this as “significant and ongoing” sufficient to trigger reassessment may require months of clinical evidence to accumulate, during which the child is unsupported.
• Mental health emergence: Adolescence is a known high-risk period for anxiety and depression in children with intellectual disability and communication difficulties. Early intervention requires acting before deterioration — the exact opposite of this provision.
• Hearing aid upgrade: Audiological needs change as a child grows. Equipment changes may be blocked inside a locked plan.

The 90-day response window compounds all of the above. A family identifying emerging needs in October may not receive a plan response until January, after a full school term has passed without adequate support. I ask the Committee to:

• Exempt individuals approaching known transition periods (including the primary-to-secondary school transition) from the new reassessment threshold
• Restore the 21-day response timeframe, or at minimum require urgent pathways for individuals in deteriorating situations
• Align the reassessment threshold with the early intervention principles already in the Act

6. Concern Four: Automatic Plan Renewal Schedule 1, Part 5 replaces plan review with automatic renewal. When a plan expires, it will roll over as an identical copy. Unspent funds and one-off funded items will not carry over. My child’s current plan was designed around their primary school context: therapies timed around the school day, communication goals appropriate to primary school literacy, and continence support appropriate for a younger child. Automatically renewing that plan into a secondary school context — a different school, different routine, different social environment, and a pubescent body — will produce a plan that is structurally misaligned with reality from day one. Any one-off assessments — assistive technology reviews, functional capacity assessments, specialist equipment reports — will disappear on renewal and cannot be replaced without clearing the new reassessment threshold. This effectively removes the family’s ability to plan proactively. I ask the Committee to:

Submission 2003

• Require a human review before automatic renewal for children approaching known developmental or educational transitions
• Ensure that one-off funded items do not disappear on renewal without an opportunity to address them
• Ensure that the participant has the ability/option to agree to an automatic renewal or request a reassessment due anticipated changes when the plan is due to expire.

7. Concern Five: Ministerial Budget Reductions Schedule 1, Part 4 gives the Minister the power to reduce funding for any category of supports across every participant’s plan simultaneously, by any percentage, through a legislative instrument that does not expire and cannot be disallowed by Parliament. The Government has announced the following reductions, commencing 1 October 2026:
   • Social, civic and community participation supports: reduced by 50%
   • Capacity building daily activities: reduced by 10%

My child’s hearing and communication support group is funded under social and community participation. This group is not a social outing. It is a targeted therapeutic intervention that develops communication skills, builds social confidence, gives them an understanding of and tools to face the hearing loss challenges, and reduces the isolation caused by sensorineural hearing loss. A 50% reduction in this budget category will directly threaten continued access to this support. The capacity building reductions will affect the hours available across occupational therapy, speech therapy, and psychology — the core therapeutic supports building this child’s long-term functional independence. I am also deeply concerned about the structure of this power itself. The Bill explicitly states these determinations are valid even if the result is that a participant’s plan no longer covers the full cost of their reasonable and necessary supports. This is written into the legislation in black and white. It is a fundamental departure from the individualist principles on which the Act was founded. Furthermore, the power is held by whoever is the Minister at the time — unchecked, not subject to sunsetting, not subject to parliamentary disallowance. There is no requirement for the Minister to provide reasons for the decision. The disability community has no guaranteed mechanism to challenge a determination that cuts their funding to an unliveable level. It could result in a program that actually provides no support at all.

I ask the Committee to: - Restore parliamentary disallowance rights over support determination instruments - Require independent review of support determinations before they take effect

Submission 2003

• Exempt therapeutic group programs with documented clinical outcomes from community participation budget reductions
• Require individual assessment before any percentage reduction is applied to a participant’s plan

8. Concern Six: Sweeping Powers Without Published Rules This is the concern I wish to emphasise most strongly to the Committee. This Bill creates or extends a significant number of Ministerial and NDIA rule-making powers. In almost every case, the rules, instruments, methods, or guidelines that will govern how those powers are exercised do not yet exist. The disability community is being asked to respond to legislation whose real-world impact cannot be known, because the operational detail has not been written. The following powers exist in the Bill without corresponding published rules:

• The Budget Method (Schedule 4): The formula that will determine how much money each participant receives under new framework planning has not been published. Consultation is said to begin in the second half of 2026.
• The Support Needs Assessment Tool (Schedule 4): The specific tool that will assess participants under the new framework has not been released for public scrutiny or consultation.
• Definition of “Directly” (Schedule 1, Part 3): No published guidance explains what the new causal test requires. Planners and automated systems will interpret this without a ruleset.
• Automated Decision-Making Rules (Schedule 3): The Bill creates legal authority for automated decisions about disability funding. No rules specify which decisions will be automated, what criteria the algorithm will apply, or what human review rights exist.
• Ministerial Pricing Determinations (Schedule 3): The Minister becomes the sole decision-maker on pricing. No rules govern the process, criteria, frequency, or consultation requirements for pricing changes.
• Future Support Determinations (Schedule 1, Part 4): Beyond the announced October 2026 reductions, the Minister has unlimited power to make further reductions at any time. No rules limit this power.
• Home and Living / SIL Commissioning: A new commissioning model for Supported Independent Living is under development. The design has not commenced consultation.
• Transitional Rules (Schedule 5): The Minister may make transitional rules for 12 months post-commencement. These rules are not yet written.

The effect of passing this Bill without the supporting rules is that Parliament will be granting significant power over the lives of 760,000 Australians with disability based on a description of intent, not a description of outcomes. By the time the rules are written, the Bill will already be law and the power already granted.

Submission 2003

For a child with a rare syndrome, the absence of rules is especially dangerous. Potentially, decisions made about common disability profiles are more likely to be accurate under a generic framework than decisions about rare, multi-system conditions. Without specific guidance, my child is at the mercy of whoever interprets the test — human or algorithmic — on a given day. I ask the Committee to:

• Recommend that the Bill not pass until the Budget Method, Support Needs Assessment Tool, and definition of “directly” are published and subject to genuine public consultation
• Require all Ministerial determinations under Schedule 1, Part 4 to be subject to parliamentary disallowance
• Require a human review right for any automated decision that results in reduced funding
• Mandate that automated decision-making systems be validated against rare and complex disability profiles before deployment
• Require the Minister to publish criteria for pricing and support determinations before exercising those powers

9. Concern Seven: Tightened Permanence and “Treatable” Impairments Schedule 1, Part 8 tightens the definition of permanence to exclude conditions that “can be treated.” A rare genetic condition is permanent and should satisfy this test. However, several of my child’s co-occurring conditions may be vulnerable to a narrow application of this test:

• ADHD: Medication exists. If a planner or algorithm treats medication as resolving the impairment, supports connected to attention, executive function, and behaviour regulation could be at risk.
• Sensorineural hearing loss: Hearing aids manage but do not cure the condition. The distinction between managed and treated must be clearly drawn in legislation or guidance.
• Urinary incontinence: The recurrent UTI component may be characterised as episodic and treatable. The underlying continence impairment is structural and neurological, but requires strong clinical documentation to survive this test. Appropriate treatment is not clearly defined and easily confused with the very therapies which provide reasonable and necessary support to the impairment. The provisions themselves do not make it clear if “treatments” are purely medical or go further. In almost all cases, a participant will have existing reports from medical and allied health professionals who have the strongest understanding of the participant and whether any “treatment” can cure the impairment.

I ask the Committee to:

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• Publish clear guidance distinguishing between conditions that are “treatable” in the sense of being resolved, and conditions that are managed or controlled but not cured
• Ensure that ADHD, sensorineural hearing loss, and continence impairments, and many other impairments, are not excluded on the basis that medication, hearing aids, or management protocols exist

Concern Eight: Displacement to Other Service Systems

Schedule 1, Part 9 formalises the principle that where another government system could provide a service, the NDIA may decline to fund it. For my child, this creates specific risks across several supports: - Continence products: The Continence Aids Payment Scheme (CAPS) exists through the health system. CAPS funding caps are significantly lower than what my child requires. Displacement to CAPS would result in an unmet funding gap. - Psychology support: Medicare-funded mental health plans are capped at 10 sessions per year. For a child with intellectual disability, ADHD, and anxiety arising from physical, communication and sensory difficulties, 10 sessions per year is clinically inadequate. - Audiology: Hearing services sit across multiple systems. Pressure to shift costs to other systems may leave gaps at the boundaries.

The Government has acknowledged that mainstream services have collapsed and that families have had nowhere else to turn. Directing participants to those services while they remain inadequately resourced does not reduce the need for support — it simply removes the funding and leaves the need unmet. Rebuilding those services will merely spread the costs not eliminate them. I ask the Committee to: - Ensure that displacement to another system requires demonstrated adequacy of that system for the participant’s specific needs - Require that any reduction in NDIS funding based on other system availability be accompanied by a funded referral pathway

Summary of Recommendations

I respectfully ask the Committee to recommend the following amendments and conditions: On the Bill’s internal contradictions: - Reconcile the exclusion of informal supports from functional capacity assessment with their inclusion in the funding decision - Align the reassessment threshold with the early intervention principles in the same Act

Submission 2003

On rules not yet written:

• Do not pass the Bill until the Budget Method, Support Needs Assessment Tool, and operational definition of “directly” are published and consulted upon
• Require all support determination instruments to be subject to parliamentary disallowance
• Publish criteria for Ministerial pricing and funding decisions before those powers are exercised

On participant protections:

• Exempt individuals approaching developmental transitions from automatic plan renewal without review
• Restore the 21-day reassessment response timeframe or provide urgent pathways for children in deteriorating situations
• Require individual assessment before budget percentage reductions are applied
• Mandate human review rights for all automated funding decisions
• Validate automated systems against rare and complex disability profiles before deployment
• Publish clear guidance on the “treatable” test to distinguish managed conditions from resolved ones

12. Closing Statement

My child did not choose their condition. I did not choose to be navigating a legislative reform process on their behalf while simultaneously managing their therapy schedules, continence routines, hearing aid appointments, and school transition planning. I am making this submission because I believe the Committee has the opportunity to improve this Bill significantly before it passes. And to ensure that the individuals this scheme was built to support are not the ones who pay the price for problems they did not create. My child is 11 years old. The NDIS should be there for them at 21, at 41, and beyond. That requires sustainability. But it also requires that when the rules are finally written, they are written for people like my child — complex, rare, permanent, and entirely deserving of the scheme’s original promise.

Submitted by: Parent and Guardian Date: May 2026 Inquiry: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2003

Committee: Senate Standing Committee on Community Affairs Submission portal: aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/NDISFutureGe nBill