NDIS Reform and Developmental and Epileptic Encephalopathies (Inquiry submission) (Individual advocacy) | External submission

Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

DEE & RARE COMPLEX EPILEPSY COMMUNITY

S U B M I S S I O N

NDIS Reform and Developmental and

Epileptic Encephalopathies

Why standardised disability reform risks structural exclusion for rare and

complex epilepsies such as Developmental and Epileptic Encephalopathies

(DEE).

P R E P A R E D F O R

Senate Community Affairs Legislation Committee inquiry into the National Disability

Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

P R E P A R E D B Y

The Australian DEE and Rare Complex Epilepsy Community

May 2026 hello@geneticepilpesyteam.com.au

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

Executive summary

This submission addresses the National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026 from the perspective of families and individuals living

with developmental and epileptic encephalopathies (DEEs) and other rare progressive

neurogenetic conditions. It draws on community survey evidence, clinical realities and lived

experience across multiple rare and genetic epilepsy syndromes, including SCN1A, SCN2A,

KCNQ2, CDKL5, SYNGAP1, FOXG1 and others.

Our central concern is that the proposed reforms are designed around assumptions that do not

hold for rare progressive neurogenetic disability. Across the Bill, the reforms repeatedly

presume disability is relatively stable, measurable at a single point in time, responsive to

standardised assessment, and suited to improvement-oriented planning approaches. DEEs are

none of these things.

People living with DEEs experience fluctuating functioning, progressive complexity, treatment

resistance, episodic deterioration and lifelong support needs. Their support needs are often

clinically predictable in direction, but highly unpredictable in timing and presentation. The

submission argues that many of the proposed reforms including standardised functional

assessments, tighter permanence and treatment criteria, constrained reassessment pathways,

fixed budget structures, and reductions to participation and capacity-building supports risk

systematically disadvantaging this population because they are built around a stable disability

model.

This is not simply an implementation concern. The submission argues that, without explicit

safeguards and specialist pathways, the reforms risk embedding structural exclusion into the

future architecture of the NDIS for people with rare progressive neurogenetic disability.

A particular concern arises from the proposed permanence and “appropriate treatment”

provisions. Historically, the NDIS early intervention framework has recognised that children may

have permanent disabilities while still benefiting from therapy, rehabilitation and developmental

supports. The proposed amendments risk reframing the possibility of functional improvement

through therapy as evidence against permanence itself. For children with DEEs, emerging

therapies, anti-seizure medications and developmental interventions may improve aspects of

functioning without altering the underlying permanence and severity of the condition.

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

The submission also highlights broader risks associated with the reforms, including:

underestimation of fluctuating and invisible disability through standardised assessment
delayed reassessment despite neurological deterioration or regression;
population-based planning approaches that do not accommodate rare disease complexity;
reductions to supports that sustain function and prevent regression; and
expanded assumptions about parental responsibility for children with high and complex support needs.

The submission does not argue against reform itself. Rather, it argues that a standardised

reform package cannot safely or fairly be applied to rare progressive neurogenetic disability

without explicit safeguards, specialist expertise and tailored planning pathways.

The submission therefore recommends:

a specialised DEE planning pathway within the new framework planning model;
permanence protections for progressive neurogenetic conditions;
specialist neurological expertise in assessment and planning;
urgent reassessment pathways following documented deterioration;
protections for participation and capacity-building supports that sustain function; and
additional consultation and detailed consideration before implementation proceeds. The evidence base is already clear. The experiences of DEE families, the SCN2A Australia

survey findings, existing NDIA specialist planner precedents, and the clinical realities of

progressive neurogenetic disability all demonstrate that standardised disability reform cannot

simply be applied uniformly across this population without foreseeable harm.

The Bill should not proceed in its current form

Why this submission integrates two evidence streams

A 2026 national survey of 134 families and individuals living with rare and genetic epilepsy across the Australian DEE and rare complex epilepsy community, conducted by SCN2A Australia, produced 111 substantive responses on NDIS experience. The findings are stark:

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

67% of respondents described plans as inadequate or denied, six were formally denied access, and five required AAT or tribunal action to secure baseline supports.

Those failures were not random. They clustered into six structural themes: progressive disability not understood; epilepsy misclassified as a medical rather than disability issue; safety needs unmet; plans rolled over without reassessment as conditions deteriorated; formal challenges required to access basic support; and outcomes determined by family advocacy capacity rather than need.

Read against the current Bill, those themes become diagnostic. Every one of them describes a failure mode that the reforms either preserve or intensify. The reforms validate the survey evidence; the survey evidence demonstrates the reforms’ downstream consequences. The two are not separate. They are the same argument, made from opposite directions.

WHAT T HE SURVEY T ELLS US

67% of DEE family respondents describe a system that already fails to accommodate progressive neurogenetic disability. The structural failure is documented, consistent, and traceable to a single root cause: the NDIS was designed for stable disability, and DEEs are not stable.

DEEs do not fit a stable disability model Developmental and epileptic encephalopathies are a group of severe, rare, genetic epilepsy syndromes in which the epileptic activity itself contributes to progressive neurological, cognitive, intellectual, sensory and/or physical impairments. They are caused by pathogenic variants in genes including SCN2A, SCN1A (including Dravet syndrome), KCNQ2, SYNGAP1, CDKL5, FOXG1 and hundreds of others. Onset is in infancy or early childhood, drug resistance is the norm, and co-occurring intellectual disability, motor impairment, communication difficulty and behavioural challenge accumulate over time. DEEs affect approximately one in 590 children, representing a substantial and high-burden population requiring lifelong multidisciplinary care and support.

Five clinical characteristics make DEEs structurally incompatible with stable-disability planning:

Developmental stalling or regression. Skills are lost, not gained. Plans built around 12- month improvement goals are misaligned from the outset.
Medical unpredictability. A child stable today may be hospitalised next month. Status epilepticus is a recurring risk.
Treatment resistance. The majority of DEE patients never achieve sustained seizure control. Treatment-trial language presumes a therapeutic endpoint that, for most, will not arrive.

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

Progressive complexity. Comorbidities accumulate. Cognitive, motor and behavioural disability compound over years and decades.
No curative pathway. The genetic cause is permanent. No current treatment eliminates the condition.

The predictability principle

The trajectory of an individual DEE patient cannot be precisely forecast. The direction of travel is medically certain. Families know their child will not improve and that complexity will grow. This is the predictability principle: even where the exact path is unknown, decline is foreseeable.

Predictability should be the basis for proactive planning, not reactive crisis management. The current system and the proposed reforms both require families to wait until a crisis materialises before additional supports are considered. That sequence is the inverse of evidence-based planning for a progressive condition.

The goal-setting paradox

The NDIS planning framework requires participants to nominate goals and demonstrate progress. For improving conditions, that framework is reasonable. For DEEs, it creates a structural absurdity. A family whose child is losing skills cannot honestly project independence within 12 months. The clinically accurate goal is to maintain function, prevent regression, and prepare for further loss. The framework treats those goals as undervalued.

The result: honest families are disadvantaged. Families who learn to frame their child’s needs in aspirational terms are rewarded. Survey respondents named this directly:

“I don’t think it accounts for regression when the NDIS is so focused on achieving goals.”

Parent, child with a DEE

“The plan has been repeatedly rolled over without proper reassessment, which means their evolving and complex needs are not being adequately considered. We are hesitant to request additional supports despite needing them, due to fear that if the plan is reviewed, funding may be reduced.”

Parent, KCNQ2, age 7

Sustaining function is not the same as improving function

The reform language repeatedly assumes improvement-oriented disability: standardised assessments to determine functional capacity, participation supports tied to community engagement, capacity-building supports tied to growing independence. For DEE families, the policy lens needs to shift toward three different objectives:

sustaining current function in the face of disease progression; Page 5 | May 2026

Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

preserving safety in a context of life-threatening seizure events;
supporting families through progressive complexity, including bereavement. These are legitimate disability outcomes. They are not what the current Bill is designed to fund.

Specific reform risks for DEE families This section analyses the major elements of the Bill against the survey evidence. Each subsection identifies the reform, names the risk for DEE participants, and cites the survey theme that supports the concern.

3.1 Standardised, evidence-based functional capacity assessments

The Bill provides for a new eligibility process based on standardised assessment of functional capacity, informed by a Technical Advisory Group. The intent is consistency. The risk, for rare progressive neurogenetic disability, is structural exclusion.

Standardised assessment instruments measure observable function at a moment in time. For DEEs, function fluctuates: a child who can communicate in a familiar setting may be non-verbal during seizure clusters; a child who can walk most days may lose mobility after status epilepticus. A single-point functional assessment captures the best version of a fluctuating child and codes the worst version as exaggeration.

Behavioural dysregulation, sensory dysregulation, sleep dysregulation, and the cognitive load of constant seizure vigilance are largely invisible to standardised instruments. The caregiver burden of 24-hour active supervision does not appear on a functional capacity scale. None of these features is unusual in DEEs; all are routinely under-recognised.

A related concern arises from proposed subsection 9B(1)(a), which defines functional capacity by reference to what a person can do “without assistance from other people, assistive technology or modifications”. For many people living with developmental and epileptic encephalopathies (DEEs) and rare complex epilepsies, however, the central issue is often not whether the person can technically perform an activity, but whether they can do so safely without supervision, monitoring or support.

A child may be physically able to walk but have no awareness of danger during or following seizure activity. A participant may be able to eat independently but require supervision because of aspiration or choking risk. Overnight monitoring may be required despite apparent independence in sleeping because of nocturnal seizures, respiratory compromise or sudden deterioration.

These forms of disability-related support need are not easily captured within assessment approaches focused primarily on observable task performance at a single point in time. The proposed framework risks underestimating the impact of fluctuating neurological presentation,

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

episodic deterioration and the practical reality that many DEE participants require continuous supervision to remain safe in daily life.

As a result, the assessment framework may fail to capture the level of support required to preserve safety, prevent harm and sustain family caregiving capacity for participants living with DEEs and rare complex epilepsies.

RISK

Standardised functional capacity assessment will systematically underestimate need in DEE participants by measuring fluctuating disability at a single point, missing episodic deterioration, and failing to capture invisible burden. Survey Theme 1 (progressive nature not understood) is the direct downstream consequence already documented under the existing framework.

3.2 Tighter permanence and treatability criteria

The Bill introduces a new definition of “appropriate treatment” in section 25A, requiring consideration of whether an impairment can be materially improved, reversed or alleviated through evidence-based treatment that is regularly undertaken in Australia. For families affected by developmental and epileptic encephalopathies (DEEs), this raises significant concerns.

Australia is investing significantly in precision medicine for rare epilepsy: gene therapy trials, antisense oligonucleotide therapy, repurposed compounds and condition-specific drug development. These developments are important and welcome. However, many emerging therapies aim to reduce seizure burden or improve aspects of functioning rather than eliminate the underlying neurological disability and developmental impacts associated with DEEs.

The proposed amendments represent a significant conceptual shift in the approach to permanence and early intervention under the NDIS. Historically, the early intervention pathway has recognised that children may have permanent or likely permanent impairments while still benefiting from therapy, rehabilitation and developmental supports. The focus has been on functional impact and the benefits of early intervention in improving participation, reducing future support needs and strengthening family and informal supports. Improvement through therapy has not been treated as inconsistent with permanence.

The Bill substantially alters this framework by linking permanence to treatment exhaustion and future treatment responsiveness. Under proposed subsection 25(1B), an impairment will not be considered permanent unless the person has undertaken all “appropriate treatment”, any further treatment is unlikely to materially improve, reverse or alleviate the impact of the impairment, and the impairment is likely to persist for the person’s lifetime. This creates a risk that the existence

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

of ongoing or emerging treatment options may increasingly be interpreted as evidence against permanence itself, even where substantial lifelong disability remains.

This risk is particularly acute for children with DEEs. Many therapies and medical interventions may improve aspects of functioning, reduce seizure frequency or alleviate secondary complications without altering the underlying permanence of the neurological condition. Children with DEEs often experience profound and lifelong disability despite intensive treatment. The possibility of some functional improvement should not undermine recognition of the permanence and severity of their disability.

The breadth of the definition of “appropriate treatment” further heightens concern. The provision captures treatment that can “materially improve” or “alleviate” the impact of impairment, which could encompass a wide range of therapies, interventions and emerging treatments. Importantly, subsection 25A(2) provides that treatment may still constitute “appropriate treatment” regardless of whether a person can realistically access it due to financial circumstances or geographic location. This creates a risk that families may be expected to pursue therapies that are unavailable, unaffordable, geographically inaccessible or subject to extensive waitlists in order to establish permanence and maintain eligibility.

The provision also creates uncertainty about how “undertaking all appropriate treatment” will be interpreted in practice for people with epilepsy and DEEs. Many children cycle through multiple anti-seizure medications, combination therapies and treatment approaches over time, often with significant side effects and variable effectiveness. Clinical decision-making in epilepsy is highly individualised and frequently involves balancing seizure reduction against sedation, behavioural impacts, developmental effects, safety and quality of life.

It is unclear who will determine whether a person has undertaken “all appropriate treatment”, what evidentiary standard will apply, and whether families will effectively be expected to pursue every neurologist-recommended medication or treatment pathway in order to maintain eligibility. The Bill does not clarify how disagreement between clinicians, parental decision-making, treatment burden, cumulative side effects, risk tolerance or quality-of-life considerations will be treated.

The amendments also risk shifting NDIS eligibility assessments into contested areas of clinical decision-making and treatment compliance, rather than focusing on the functional impact and permanence of disability. The provisions blur the distinction between treatment that may improve functioning and treatment that fundamentally alters the permanence of a condition. This is particularly problematic in the context of lifelong neurological disability, where therapeutic gains may improve quality of life and functioning without removing the need for substantial ongoing disability support.

This creates a significant policy tension. Australia is investing in genomics, advanced therapies and newborn screening to improve outcomes and survival for children with rare neurological conditions, while the disability support system risks narrowing access on the basis that some

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

treatment options exist. Scientific progress does not eliminate disability, and eligibility settings should not create unintended disincentives, treatment pressures or uncertainty for families navigating complex lifelong conditions.

“Epilepsy can be difficult due to NDIS’s access criteria of ‘permanency’ and ‘treatment options trialled and exhausted’ before its impacts are recognised and funded as a disability rather than a medical condition.”

Adult respondent, CNKSR2-related DEE

RISK

The proposed treatment and permanence criteria risk treating emerging therapies, partial treatment responses, or ongoing anti-seizure medication use as evidence that a child’s impairment is not permanent, despite substantial lifelong disability remaining. The provisions blur the distinction between treatment that may improve functioning and treatment that alters the permanence of a condition. This creates a risk that children with severe neurogenetic and epileptic disorders may face delayed or narrowed access to the NDIS on the basis that some treatment options or therapeutic gains exist, even where the underlying condition remains lifelong and profoundly disabling. The Bill should clarify that the existence of experimental, ongoing or partially effective treatments does not negate permanence for progressive or lifelong neurological conditions, including developmental and epileptic encephalopathies.

3.3 Reductions to participation and capacity-building supports

Proposed section 34A, Determination reducing funding for groups of supports, would allow the Minister to reduce funding in existing NDIS plans for specified groups of supports through a legislative instrument, for the stated purpose of ensuring the financial sustainability of the Scheme.

The reductions could apply across classes of participant plans without reassessment of individual need and would take effect even where this results in funding being insufficient to cover supports assessed as reasonable and necessary. While the Minister must have regard to participant safety, the provision contains limited safeguards, oversight or criteria governing the use of this power.

The provision creates a significant risk that participants may lose access to essential supports due to fiscal considerations rather than individual need, undermining certainty and confidence in approved NDIS plans

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

The Minister for Health, Disability and Ageing has indicated his itention to use this power reset participant budgets for social, civic and community participation and capacity-building daily activities. The stated rationale is that these supports have grown beyond original intent. For most participants, the recalibration may be defensible. For DEE families, several specific risks arise.

Community participation is not optional for DEE participants. It is the therapeutic content of much of their day: sensory regulation, communication practice, peer engagement, and the kind of repeated low-stimulation activity that maintains function. Reducing these supports for DEE participants is not reducing extras. It is reducing maintenance of the developmental floor on which everything else stands.

Capacity-building, similarly, looks different for a child whose capacity is at risk of regression. The objective is not always to build new skill. It is often to consolidate, protect, and slow loss. The reformed framework needs to recognise this category of work as legitimate capacity building, not deny it on the basis that growth is not occurring.

RISK

Participation and capacity-building reductions, applied without DEE-specific exemption, will reduce supports that sustain function in a population for whom regression is the alternative. The downstream effects are family collapse, social isolation, and long-term cost escalation as crises become more frequent.

3.4 Reversal of “whole of person” assessment principles

Proposed paragraph 34(1)(aa) narrows the current approach to support planning by requiring supports to arise “directly” from an impairment in relation to which the participant meets the disability access criteria. This appears intended to reverse the broader “whole of person” approach reflected in the 2024 amendments to the NDIS Act and confirmed by the Federal Court in CEO of the NDIA v Eastham [2026] FCA 147. In Eastham, the Court recognised that disability support needs may arise from the interaction of multiple impairments and circumstances, provided one cause is an impairment through which the participant accesses the NDIS. The Court described this approach as “commonsense” and consistent with the structure and purpose of the Scheme.

The proposed “directly from” formulation risks replacing this approach with a narrower impairment-by-impairment causal analysis. For people living with developmental and epileptic encephalopathies (DEEs) and other rare progressive neurogenetic conditions, this distinction is critically important.

A single DEE diagnosis commonly results in multiple overlapping neurological, cognitive, intellectual, communication, behavioural, sensory and physical impairments that do not operate

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

independently of one another. Support needs arise from the cumulative and interacting effects of seizure burden, fatigue, communication impairment, behavioural dysregulation, sensory dysregulation, developmental delay, motor impairment, sleep disruption and chronic medical complexity. In practice, these impacts are frequently clinically inseparable. Supports routinely operate across multiple domains simultaneously. Communication support may reduce behavioural escalation and improve safety. Behaviour support may reduce seizure triggers and improve community participation. Supervision may relate simultaneously to epilepsy, cognitive impairment, communication difficulty and lack of danger awareness. For many DEE participants, support needs cannot meaningfully be separated into single impairment streams.

The proposed wording creates a significant risk that supports responding to cumulative or interacting disability impacts will be characterised as falling outside the scope of the Scheme because they are not seen as arising “directly” from a particular qualifying impairment in isolation. This risks fragmenting support for participants with complex neurogenetic disability and narrowing the current approach to holistic assessment and planning recognised in recent reforms and case law.

RISK

Reversal of the current “whole of person” approach risks fragmenting supports for people with DEEs and other multisystem neurogenetic conditions whose support needs arise from the cumulative and interacting effects of multiple impairments. Without safeguards, the proposed “directly from” formulation may lead to artificially narrow impairment-by impairment assessment and exclusion of supports addressing combined functional impacts.

3.5 Tightened unscheduled reassessment criteria

The Bill narrows the circumstances in which participants can request an unscheduled reassessment of their NDIS plan by requiring evidence of a “significant and ongoing” change in functional capacity, personal circumstances, or support needs. While intended to reduce administrative burden, these provisions may create barriers for participants with DEEs and other fluctuating or progressive neurological conditions.

DEE participants do experience significant and ongoing changes to support needs: a new seizure type emerges, a child loses speech after a cluster, mobility deteriorates following status epilepticus. These changes are clinical events with immediate functional consequences. The reformed reassessment framework needs to ensure that documented clinical deterioration

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

triggers an urgent reassessment within a defined timeframe, not that families wait for the next scheduled cycle.

The provisions also create uncertainty about how episodic deterioration, fluctuating capacity and cumulative regression will be assessed, particularly where changes occur rapidly or unpredictably. Families should not be required to wait for scheduled plan reassessments where documented clinical deterioration has resulted in substantially increased support needs.

The Bill should ensure that participants experiencing significant neurological deterioration or loss of functional capacity can access timely reassessment processes, including urgent reassessment where clinically necessary.

“The plan has been repeatedly rolled over without proper reassessment, which means their evolving and complex needs are not being adequately considered.”

Parent, KCNQ2, age 7

RISK

Without an explicit clinical deterioration trigger, tightened reassessment criteria will risk entrenching the existing pattern of inadequate plans continuing despite significant changes in a child’s condition and support needs. The current pattern of inadequate plans persisting for years while the child’s condition deteriorates will become the formal architecture rather than the failure mode.

For children with DEEs and other progressive neurological conditions, families may be unable to access timely reassessment following seizure escalation, regression or functional decline, resulting in prolonged periods without appropriate supports.

3.6 Resetting budgets, no rollover of unspent funds

From the next reassessment cycle, unspent funds will not be carried over into renewed plans. The reform addresses budget integrity. For DEE families, it disproportionately penalises factors outside their control.

Underspending in a DEE family rarely reflects unmet need. It reflects, more often, workforce shortage (support workers with seizure and midazolam experience are difficult to recruit and retain), hospitalisation (the child is in hospital, so home supports are paused), or therapy provider unavailability. None of these are reasons to reduce future budget. All of them will be coded that way under a no-rollover rule applied uniformly.

RISK

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

A blanket no-rollover rule penalises DEE families for circumstances they cannot control: rural workforce gaps, paediatric hospitalisation, and seizure-related disruption to therapy schedules. The reform should allow rollover, or budget protection, where underspend is attributable to documented external factors.

3.7 New framework planning

The new framework planning approach, scheduled to roll out from 1 April 2027, will deliver participant budgets through a new support needs assessment and budget method. The intent is equity and consistency. The risk for rare disease participants is oversimplification.

“Participants with similar needs” is a category that does not exist meaningfully for DEEs. The participant population is small, the diagnoses are heterogeneous, the trajectories vary, and the comparator group within any standard assessment tool will not include DEEs in sufficient numbers to calibrate the instrument. Average budgets derived from population modelling will systematically under-fund the long tail of complex need that defines this cohort.

RISK

Population-based budget modelling does not accommodate rare disease complexity. The new framework needs an explicit rare disease stream, with planner expertise and budget setting informed by clinical evidence rather than population averages.

3.8 Expectations of parents and families

We are deeply concerned by the proposed amendments to section 34(1) relating to family and parental responsibility for supports for children. As currently drafted, these provisions risk significantly expanding the scope of supports presumed to be the responsibility of parents and carers, creating a basis for reducing funded supports for children with disability, including support worker hours.

In particular, proposed sections 34(1G) and 34(1H)(a) establish a presumption that parents are responsible for providing “substantial care and support” to their children, including supervision, personal care, transport, emotional support and behavioural support. However, unlike section 34(1H)(b), these provisions do not clarify that parental responsibility must be assessed by reference to the level of care ordinarily required by a child of the same age without disability.

This distinction is critically important. As drafted, the amendments appear to treat all supervision, personal care, behavioural support and related assistance as falling within ordinary parental responsibility, even where the level, intensity, frequency or complexity of support required is substantially greater than would reasonably be expected for a child without disability.

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

This creates a serious risk that children with high support needs will be excluded from receiving necessary funded supports on the basis that these supports are characterised as parental responsibilities rather than disability-related supports. It also risks entrenching unsustainable caring expectations on families, particularly where children require constant supervision, intensive behavioural support, assistance with personal care beyond age expectations, or support related to communication, safety or regulation.

These concerns are reinforced by survey responses and academic research demonstrating the substantial psychosocial and economic impacts experienced by families and carers of children with disability, including mental health impacts, financial strain, workforce impacts and social isolation. Expanding assumptions about parental responsibility without appropriate safeguards risks exacerbating these harms and further shifting the burden of disability support onto families.

The legislation should make clear that any assessment of parental responsibility must be explicitly benchmarked against the care and supervision ordinarily required for a child of the same age without disability, across all categories of support listed in section 34(1G) and 34(1H). Without this clarification, the amendments risk undermining the purpose of the NDIS and shifting disability-related support obligations onto families.

RISK

The proposed provisions create a substantial risk that disability-related supports will be reclassified as ordinary parental responsibilities, resulting in reduced access to funded supports for children with disability. This risks imposing unreasonable and unsustainable caring expectations on families, contrary to the objectives and principles of the NDIS, and may disproportionately impact families of children with high and complex support needs.

The solution: a specialised DEE pathway The reforms make a specialised pathway more necessary, not less. The reform package is designed for a standardisable, stable, measurable population. DEEs are none of these things. The choice is therefore not between standardisation and special treatment. It is between standardisation with carve-outs, or standardisation that excludes rare progressive neurogenetic disability by design.

Precedent exists. The NDIA has established dedicated specialist planner arrangements for certain rare progressive genetic neurological conditions (for example childhood dementia), demonstrating that the model is achievable within the existing framework. The principle should be extended to DEEs and to comparable rare progressive neurogenetic conditions.

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Submission 464

D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

Tier 1: Structural recommendations

Recommendations in this tier require legislative or framework-level provision. They are non negotiable for the integrity of the reform package as it applies to DEEs.

Establish a specialised DEE planning pathway within new framework planning, with proactive reassessment, flexible funding, and rapid response to documented deterioration.
Ensure the Technical Advisory Group to be established includes a neurological expert with a deep understanding of DEEs.
Designate specialist planners for DEEs and comparable rare progressive genetic neurological conditions, with continuity across plan cycles and condition-specific training, consistent with arrangements already established for other rare progressive genetic neurological conditions.
Create a rare disease stream within new framework planning, with budget setting informed by clinical evidence rather than population averages.
Formally recognise fluctuating neurological disability as a valid functional state, with assessment instruments designed to capture episodic deterioration and invisible burden.

Tier 2: Safeguards within the reform

Recommendations in this tier modify how reform elements apply to DEE participants. They are required to prevent predictable harm.

Permanence protection: genetic confirmation of a progressive neurogenetic disorder satisfies the permanence criterion, , notwithstanding the existence of emerging, experimental

or partially effective treatments. The existence of precision medicines, anti-seizure medications or

therapies that may alleviate some aspects of impairment must not be treated as evidence that a

condition is not permanent where substantial lifelong disability remains. The Bill should also clarify

that reasonable clinical and family decisions about treatment pathways, including decisions based

on side effects, treatment burden, accessibility and quality of life, do not affect eligibility.

Exemption from participation and capacity-building reductions where documented clinical need establishes that these supports are sustaining function or preventing regression.
Urgent mid-cycle reassessment trigger: where clinical deterioration is documented by a treating specialist, an urgent plan review must commence within 28 days.
Rare disease clinical expertise in functional capacity assessment, either through specialist assessor accreditation or mandatory specialist review for DEE participants.
Rollover protection where underspend is attributable to documented external factors: workforce shortage, hospitalisation, or therapy provider unavailability.

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D E E & R A R E C O M P L E X E P I L E P S Y C O M M U N I T Y   |  Submission: NDIS Reform and DEEs

Tier 3: Equity and navigation

Recommendations in this tier address the access gap created by family advocacy capacity. Survey Theme 6 demonstrates that adequate plans are predicted by family literacy with the system, not by severity of need. The reform package, without these supports, will deepen that inequity.

Ensure the new approach to support coordinators include funding a DEE Navigator role, available to all families with a DEE diagnosis, providing independent system navigation.
Establish structured transition protocols for adult transition, with no gap in support.
Establish a bereavement transition period: where a participant dies, family supports continue for a minimum of 90 days, with access to bereavement counselling and carer support.
Reduce administrative burden for families whose child’s condition is permanent and progressive: longer plan cycles where stability is documented, reduced re-evidencing requirements, and proactive prompts to families when documentation may be required.

Conclusion This submission has argued that the Bill, as currently drafted, does not adequately accommodate people with developmental and epileptic encephalopathies and other rare progressive neurogenetic conditions. Without explicit safeguards, the proposed reforms risk embedding structural exclusion into the future architecture of the NDIS.

A key question is whether the future architecture of the Scheme will deliberately accommodate rare progressive neurogenetic disability, or whether the design choices embedded in this Bill will continue to exclude this population through systems designed for stable and standardisable disability.

That question cannot be left unresolved. The Bill should be amended to incorporate explicit safeguards and specialist pathways for people with DEEs and comparable rare progressive neurological conditions, including protections relating to permanence, fluctuating and progressive disability, reassessment triggers, specialist planning, and participation and capacity building supports.

Given the scale and complexity of the proposed reforms, and their significant implications for people with rare and progressive disability, the Committee should also recommend additional time for targeted consultation and detailed consideration.

The Bill should not proceed in its current form.

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