Submission 1433

Submission to the Senate Community Affairs Legislation Committee

Inquiry:

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

From: and , as parents of

Date: 29 May 2026

Submission lodged in capacity as: Family submission, lodged in personal capacity.

About this submission

We are and , parents of . is 24. He lives with an SCN2A gain-of-function variant, one of the most severe of the developmental and epileptic encephalopathies (DEEs). He requires 24-hour care, seven days a week, and cannot be left safely in the community without support. He has significant communication challenges; he cannot reliably tell us when he is in pain, when he is unwell, or when a seizure is coming. We read him instead, the way you learn to read a person you have cared for every day of his life. We have been ’s primary carers for all of his 24 years. We make this submission because the Bill, as drafted, will compound the harm already experienced by families like ours.

     is a specialist sleep physician.      is the founder of SCN2A Australia and has worked in rare disease policy, health technology assessment and consumer engagement for more than two decades. We bring a clinical eye and a policy eye to this submission, but the submission itself is a family one. Everything we describe here, we have lived.

We did not expect to be writing this. The NDIS was built for people like , and we have trusted it to hold. This Bill has shaken that trust. Watching a scheme meant to protect the most vulnerable being reshaped in ways that quietly read our son out of it is a profound disappointment, and it is why we write not only as informed professionals but as worried parents who can see where these changes will land.

Summary

This submission focuses on five provisions in the Bill that will disproportionately and unfairly affect people with complex and rare epilepsies, including the DEEs:

• The new statutory definition of functional capacity (s 9B) excludes the impact of supports, assistive technology and environmental factors. For seizure-related disability, which is episodic and environmentally triggered, this will systematically understate need.

• The tightened permanence test (ss 24(5), 25(1B), 25A) requires participants to have undertaken all ‘appropriate treatment’, even where the person cannot access that treatment for financial or geographical reasons. For rare epilepsies that require specialist neurology, this creates a closed loop: treatment unavailable, but the access pathway requires you to have had it.

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• The evidence hierarchy in s 34(1E)–(1F) ranks ‘published, peer-reviewed and generalisable’ research above clinical evidence and the participant’s own outcomes, and allows the CEO to refuse funding where such evidence is limited. For ultra-rare conditions, that evidence cannot exist.

• The new ministerial power in s 34A to cut funding by legislative instrument transfers the financial risk of scheme sustainability onto participants, with no requirement that reduced funding actually covers the supports.

• The automation of plan-related decisions under Schedule 3 Part 2 will produce systematic errors for participants whose presentations are atypical, episodic or rare.

This submission does not oppose scheme sustainability. It identifies five technical changes that would preserve the Bill’s intent while preventing avoidable harm to a small but identifiable group of participants and applicants.

Why complex and rare epilepsies need separate consideration

Developmental and epileptic encephalopathies are a group of rare and ultra-rare conditions characterised by intractable seizures, developmental impairment, and complex medical and psychiatric comorbidities. Examples include Dravet syndrome, SCN2A-related disorders, KCNQ2 encephalopathy, CDKL5 deficiency disorder, Lennox-Gastaut syndrome, and infantile spasms. Most affect fewer than 1 in 20,000 people in Australia; some affect fewer than 100 people nationally. s variant sits within this group.

’ s disability is not a single diagnosis. Alongside the SCN2A encephalopathy, he lives with autism at the highest level of support need, intellectual disability, a chronic anxiety presentation, and a movement disorder affecting balance, coordination and proprioception. He is functionally non-verbal and communicates through assistive technology. These conditions do not sit politely side by side; they compound. A support that helps with one can destabilise another, and no published evidence base describes the combination, because the combination is close to unique. That is what ‘complex’ means in practice, and it is the reality the Bill’s tidy definitions are not built to hold.

A Monday at our house starts early. has had a poor night, as he often does. He needs prompting and physical support to dress, to wash, to eat. He cannot be left alone in the kitchen. He can have a seizure walking from the bedroom to the bathroom, and we have to be near enough to catch him. Across the day there is medication, supervision, and the unending background work of watching for the next event. At night, one of us still listens for him. SUDEP, sudden unexpected death in epilepsy, is a real and named risk for his condition, and we manage to it every single day. The supports we provide are not enhancements to ’s life. They are how he stays alive.

has a twin sister, . They were born minutes apart. trains as a bodybuilder; she competes, she travels, she is building an adult life of her own choosing. needs one of us within arm’s reach to cross a room safely. Two lives that began on the same day. The distance between what they can do is the simplest way we know to describe what SCN2A takes, and it is the kind of need this Bill is being drafted to misread.

That texture, episodic, dangerous, demanding constant low-grade vigilance, is what the Bill misses. And it is not easing with age. ’s seizures management, and his anxiety and

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behavioural distress have grown, not lessened, as he has moved into adulthood. The supports he needs are not a phase to be tapered out of; they are the floor he stands on. The assumption built into much of this Bill, that need can be expected to reduce, runs in the wrong direction for him.

Functional Capacity (section 9B)

4.1 What the Bill does

The Bill inserts a new definition of functional capacity: the person’s ability to undertake an activity (a) without assistance from other people, assistive technology or modifications, and (b) in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances.

4.2 Why this fails complex and rare epilepsies

Seizure-related disability is episodic and environmentally driven. A person with temperature- sensitive epilepsy may appear fully able to participate in an activity at the moment of assessment, but be unable to safely do so without environmental modifications, continuous supervision, and a seizure-response protocol in place. A snapshot assessment of capacity, stripped of context and supports, will routinely understate need.

  is the example we know best. On a quiet morning, in a calm room, in front of an

assessor he has met before, can sit at a table, accept a drink, hand back a cup. Read literally, that is a person with functional capacity in the activity of self-feeding. The reality is that without one of us within arm’s reach, that same activity carries a real risk of aspiration during a seizure, choking, or a fall. The capacity is real. The safety is provided by us. Section 9B, as drafted, would credit with the capacity and discount the people who make it safe.

This is not only our account. An occupational therapy functional capacity assessment carried out in early 2026 recorded as independently mobile over short distances, the kind of line a context-stripped assessment captures cleanly. The same assessment documented impaired balance, hypotonia, dyspraxia and impaired proprioception, a standing risk of falls, development on an attendant-propelled wheelchair for any real distance, and the need for continuous supervision because he cannot reliably stop or judge danger. A speech pathology assessment in late 2025 found him functionally non-verbal, reliant on assistive technology to express need. Read through section 9B, is mobile and can sit at a table. Read by the clinicians who look past the snapshot, he is a young man who falls, cannot call for help, and is safe only because someone is beside him. The section chooses the first reading.

We have sat through planning meetings where this distinction was lost. ’s NDIS reviews have started, more than once, from a position of scepticism rather than support. As a highly ducated advocate with knowledge of the system, we have found those processes traumatic and demeaning. We should not need a professional background to be believed about our son’s care needs. Families without that background are in a far more precarious position, and section 9B will widen that gap.

4.3 What we ask

Amend section 9B so that assessment of functional capacity must account for episodic and fluctuating disability presentations, and so that the supports already in place are not used to

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under-state need. The principle that participants should not be penalised for their existing supports is sound. The drafting achieves the opposite.

5. Permanence and appropriate treatment (sections 24(5), 25(1B),

25A)

5.1 What the Bill does

The Bill provides that an impairment is not permanent unless the person has undertaken all ‘appropriate treatment’ (s 24(5), s 25(1B)). ‘Appropriate treatment’ is defined in s 25A as treatment that is evidence-based, can reliably be expected to materially improve the impairment, and is regularly undertaken in Australia. Section 25A(2) states explicitly that a treatment may be ‘appropriate’ regardless of whether the person can access it for financial, geographical or other personal reasons.

5.2 Why this fails complex and rare epilepsies

Specialist epileptology, genetic neurology, ketogenic diet services and surgical workup for refractory epilepsy are concentrated in a small number of metropolitan teaching hospitals. Regional Australia is roughly 31% of the population and is served by around 4% of the neurology workforce. Waiting lists for paediatric epileptology services routinely exceed ten months. For families in regional and remote areas, accessing these services means interstate travel, long absences from home and work, and significant out-of-pocket cost. Under section 25A(2), none of that matters. The treatment is ‘appropriate’ whether the family can reach it or not.

 ’s diagnostic journey illustrates the point. We waited 14 years for a clear genetic

diagnosis. We have lived across Victoria and Queensland during the course of his care, and each move has meant rebuilding a clinical team from scratch. In Queensland, there has been no support from Genetic Health Queensland to have variants reassessed as the science has moved. The work of keeping ’s diagnosis current sits with us, helped only by the networks we have built ourselves. If the new permanence test had applied during the years was undiagnosed, or during the long gaps between specialist reviews, he could have been told the impairment was not permanent because the ‘appropriate treatment’ trial had not occurred, regardless of whether the appointment existed.

5.3 What we ask

Amend section 25A(2) so that the CEO must have regard to whether ‘appropriate treatment’ is reasonably accessible to the participant, including financial and geographical accessibility. For rare conditions, require the CEO to consult the participant’s treating clinician on what treatment is in fact appropriate for the specific condition. Do not penalise families for the structure of the Australian health workforce.

6. Evidence hierarchy (section 34(1E)–(1F))

6.1 What the Bill does

In deciding whether a support will be ‘effective and beneficial’, the CEO must consider matters in this order of importance: (a) research and evidence in relation to the support that is ‘published, peer-reviewed and generalisable’; (b) evidence as to effectiveness in the

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6.2 Why this fails complex and rare epilepsies

Rare and ultra-rare epilepsies do not have, and cannot have, the kind of generalisable randomised trial evidence available for common disabilities. A condition affecting 30 people in Australia will not be the subject of a randomised controlled trial of a specific intervention.

The published peer-reviewed evidence available for the rarest DEEs is often a single case series, an international consortium dataset, or an expert consensus paper.

The Bill creates a two-tier evidence system. A participant with cerebral palsy can access funded therapeutic supports backed by an extensive published evidence base. A participant with the same functional needs arising from a recently identified genetic epilepsy faces a thin evidence base and the prospect of refusal. Same need, different prevalence, different outcome. That is the opposite of an equitable scheme.

This is the most significant single provision in the Bill for rare disease populations. It is also the provision least visible in general disability advocacy submissions, because for common disabilities it works as intended. The Committee should be aware that the way ‘evidence-based’ is operationalised in this Bill encodes a structural bias against rare conditions.

We have lived this. Supports for that his treating team have recommended have been queried at plan review on the basis that the published evidence for SCN2A-specific interventions is limited. The reason it is limited is that the condition was only formally described in the genetic literature in the last 15 years, and the global population of affected individuals is small. The clinical recommendation is sound; the trial that the system wants does not exist and will not exist at scale. Under section 34(1F), that absence of evidence can become an absence of support.

6.3 What we ask

Amend section 34(1E) to add a fourth category at the same priority as (a): clinical consensus and treating-clinician evidence, where research evidence is limited due to disease rarity. Remove section 34(1F), or amend it so that limited published research evidence cannot be the sole or primary basis for refusal where the participant’s impairment is rare. Define rare by reference to the National Strategic Action Plan for Rare Diseases, which defines rare disease as affecting fewer than 5 in 10,000 people.

7. Ministerial power to cut funding (sections 34A, 32K(3C))

7.1 What the Bill does

Section 34A allows the Minister, by legislative instrument, to determine a percentage by which a funding component amount for any specified group of supports is reduced. The reduction can take effect even if the result is funding less than the total cost of the support (s 34A(5)). Section 32K(3C), inserted by Schedule 4, allows funding amounts to be specified that are less than the actual cost of providing a support.

7.2 Why this fails complex and rare epilepsies

Submission 1433

Supports for complex epilepsies are specialised, low-volume and high-skill. There is no lower-cost substitute for a support worker trained in seizure response and able to deliver emergency medication safely. A uniform percentage cut applied across a support category will destroy access for high-need participants faster than for those with substitutable options.

’s supports do not have a discount version.

’s current behaviour support plan authorises physical restraint as a last resort, to stop him moving into traffic or colliding with people when he is overwhelmed. The workers who support him are trained in restraint, de-escalation and seizure response, and that practice carries its own approval and reporting obligations to the NDIS Commission. This is skilled, regulated, high-risk work. A flat percentage reduction does not make it cheaper to deliver safely; it simply makes it unfunded.

More fundamentally, the provision shifts the financial risk of NDIS sustainability onto participants. A scheme whose supports can be cut by ministerial determination, where the reduced amount may be insufficient to cover the support, is not the scheme that participants entered. For families managing 24-hour care, the prospect of a determination that drops the funded rate below the actual cost is the prospect of unpaid care hours absorbed back into the household, and back onto carers whose own health is already at risk.

What we ask

Determinations under section 34A should be:

• Disallowable by either House of Parliament, with sunsetting under the Legislation Act 2003 applied as normal.

• Made only after independent advice that includes consumer representation, with formal engagement with rare disease consumer representative bodies.

• Subject to a statutory test that the Minister must be satisfied the reduced amount remains sufficient to deliver the reasonable and necessary supports specified in plans.

Automation of administrative decisions (Schedule 3 Part 2)

What the Bill does

Sections 59B–59E authorise the CEO to arrange for administrative actions under designated provisions, including section 33, which deals with the content of plans, to be taken by computer program.

Why this fails complex and rare epilepsies

Computer programs work well for high-volume, low-variance decisions. Complex and rare epilepsies are low-volume and high-variance: atypical presentations, fluctuating needs, episodic disability, and supports that do not fit cleanly into standard codes. These are the decisions automation handles worst, and the consequences of automated error fall on families already managing intractable seizures, complex medication regimes, and education or behavioural support needs. Australia has had recent and serious experience of what automated decisions look like when they go wrong at scale.

What we ask

Submission 1433

Exclude evaluative determinations under section 33 from automated decision-making where the participant has a condition designated as rare under the National Strategic Action Plan for Rare Diseases, or has an established pattern of episodic disability. At minimum, require automated decisions to be flagged as such on the participant’s notice and to provide a human-review pathway that does not require formal merits review.

9. Recommendations

In order of priority:

• Amend section 34(1E)–(1F) so that limited published research evidence cannot be the sole or primary basis for refusing supports where the participant’s impairment is rare. Add clinical consensus and treating-clinician evidence as a category of equal priority to published research.

• Amend section 25A(2) to require the CEO to have regard to whether ‘appropriate treatment’ is reasonably accessible to the participant, and to require consultation with the participant’s treating clinician for rare conditions.

• Amend section 9B so that assessment of functional capacity accounts for episodic and fluctuating disability, and so that existing supports do not result in under- assessment of need.

• Require determinations under section 34A to be disallowable, time-limited, and made only after independent advice including consumer representation. Require the Minister to be satisfied that reduced funding remains sufficient to deliver reasonable and necessary supports.

• Exclude evaluative determinations under section 33 from automated decision- making for participants with rare or episodic conditions. Require automation flags on participant notices and a low-friction human-review pathway.

• Establish a dedicated rare disease consultation track for all NDIS rules made under the new framework, with formal engagement with rare disease consumer representative bodies.

10. Closing comments

The NDIS was designed to support people with permanent and significant disability and their families. is unambiguously within that population, and so are the other Australians living with complex and rare epilepsies. The provisions identified in this submission do not target our families, but they will harm us: by defining functional capacity in a way that misses episodic disability, by defining permanence in a way that punishes families who cannot access specialist neurology, and by defining evidence in a way that systematically disadvantages rare conditions.

These are technical fixes. They do not undermine scheme sustainability. They prevent foreseeable, avoidable harm to a small, identifiable cohort of participants. We urge the Committee to recommend them.

We will be plain about how this feels from inside our house. After more than two decades providing the care that keeps alive, we are being asked to prove yet again that his needs

Submission 1433

are real, against definitions built not to see them. The scheme and the way it is run have already stripped dignity from our family where they never should have. Without the amendments we have set out, this Bill will make that worse. That is the disappointment we bring to this submission, and we do not think we are wrong to feel it.

We are not asking for special treatment. We are asking the Committee, and through it the Government, not to pass a Bill that makes a hard life harder for a small group of Australians who cannot absorb one more loss. Fix these five provisions. Keep the promise the scheme was built on.

cannot write to you himself. He cannot tell you what a well-trained support worker means on a bad day, or what it costs him when the funding falls short. So we are telling you, on his behalf, the way we have represented him every day of his life. Please listen.

Contact

We appreciate the opportunity to speak to this proposed Bill and make ourselves available to appear and speak to the Bill.