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

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​u200b, as parents of​u200b. Date: May 29th , 2026 Submission lodged in capacity as : Family submission,lodgedin personalcapacity .

Submission

• The evidence hierarchy under s34(1E)–(1F), ranks ‘published peer-reviewed generalisable’ research above clinical outcomes or participant’s personal experiences.
  • This allows funding refusal where such evidence does not exist for ultra-rare conditions like Dravet syndrome (SCN2A-related disorder).

The new ministerial power in s34A transfers financial risk onto participants without requiring reduced funds actually cover supports needed due to scheme sustainability concerns.

Automation per Schedule Part will produce systematic errors if presentations are atypical/episodic/rare. This submission identifies five technical changes preserving intent while preventing avoidable harm:

Why complex rare epilepsies require separate consideration

Developmental encephalopathies include SCNA disorders affecting fewer than one person every twenty thousand nationally; KCNQ2 epilepsy affects less than a hundred people nationwide—Dravet’s condition sits within this group as well! His disability isn’t just one diagnosis but includes autism needing highest support level, intellectual disabilities, chronic anxieties manifesting through assistive tech and balance coordination issues that make him functionally non-verbal communicating via technology. These co-morbidities don’t sit neatly together—they compound each other! A single intervention can destabilize another because no published base describes their combination which is unique close-to-unique making them ‘complex’. Monday starts early: he needs prompting physical assistance dressing washing eating cannot be left alone kitchen seizure risks walking bathroom we must catch him across day medication supervision unending background vigilance watching next event night one of us still listens for him SUDEP sudden unexpected death in epilepsy real named risk his condition manages daily the supports provided aren’t enhancements they’re how stays alive has twin sister competing building adult life her own choosing she needs arm’s reach to cross room safely distance between what they do SCN2A takes kind need Bill being drafted misread That texture episodic dangerous demanding constant low-grade vigilant miss bill misses easing age seizures management anxiety

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

Submission 1433

behavioural distress has grown; it hasn’t lessened as my child moves into adulthood. His ongoing requirements aren’t something he can phase out; it’s his baseline level now, because much within \(this\ Bill assumes these needs might reduce—wrongly assuming this is true.

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

Submission 1433

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

Section A)

What the Bill does

The Bill provides that an impairment is not permanent unless the person has undertaken all ‘appropriate treatment’ (s, s). 'Appropriate treatment' defined sA as treatment based evidences can reliably expected improve material impairments regularly Australia. Section explicitly states (2)(2) that regardless financial geographical or other personal reasons.

Why fails complex rare epilepsies

Specialist epilepsy genetics neurology ketogenic diet services surgical workup refractory are concentrated small number metropolitan teaching hospitals Regional roughly population served around %. Waiting lists paediatric routinely exceed twelve months families regional remote areas accessing these means interstate travel long absents home from significant out-of-pocket cost Under section none of matters The treatment whether family reach it or not.’ diagnostic journey illustrates point waited years clear genetic diagnosis lived across Victoria Queensland course care each move meant rebuilding clinical team scratch In there support Genetic Health Queensland variants reassessed science moved Work keeping current with networks built ourselves If new permanence test had applied during was undiagnosed gaps specialist reviews he could been told because trial occurred appointment existed.

What we ask

Amend so CEO must have regard to appropriate treatment reasonably accessible participant including and accessibility For conditions require CEO consult treating clinician specific condition Do penalise for structure Australian health workforce.

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

What the Bill does

In deciding a support will be ‘effective beneficial’, CEO consider in this order importance: (a) research evidence relation published peer-reviewed generalisable; (b) as effectiveness,

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

Submission 1433

Participant’s circumstances; evidence from previous plans;

(d) other matters. Section 34(1F) authorises the CEO to refuse a support where, evidence category (a) is 'limited or no', even when e vidence in categories(b)and(c)are available.

Subsection:Why This Fails Complex And Rare Epilepsies

Rare and ultra-rare epileptics do not have different prevalence, different outcome`. That is opposite an equitable scheme. The most significant single provision in The Bill for rare disease populations. it also least visible general disability advocacy submissions because it works as intended.The Committee should aware way operationalised encodes structural bias against rare conditions. We lived this Supports treating team recommended queried at plan review basis published evidence SCN2A-specific interventions limited reason formally described genetic literature last years global population affected individuals small clinical recommendation sound trial system wants does exist scale Under section that absence of evidence can become absencce of support.

What We Ask

Amend Section to add fourth category same priority (a):clinical consensus and treating-clinician evidence research evidence due rarity Remove section so limited published research cannot be sole primary refusal participant’s impairment rare Define by reference National Strategic Action Plan defines rare affecting fewer than people.

Ministerial Power To Cut Funding Sections 34 A , S2K(3C))

What the bill Does

Section allows minister legislative instrument determine percentage funding component amount specified group supports reduced reduction take effect even if result less total cost s 34A5). Section inserted Schedule K(3C)allows funding amounts specify actual cost providing a support.

Why This Fails Complex And Rare Epilepsies

National Disability Insurance Scheme Amendment

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 to deliver emergency medication safely.A uniform percentage cut applied across a support category will destroy access for high-need participants faster than for thosewith substitutable options.'’ ssupportsdo n ot have adiscount version.‘` ``’ current behavioursupport plan authorises physical restraint as alast resort, to stop him movinginto trafficor colliding with peoplewhen he isthoroughly.The workers who supporthimaretrainedinrestraint , deescalationandseizureresponse,and that practice carries its own approvalandreporting obligations tothe NDIS Commission.This isskilledregulatedhigh-risk work .A flatpercentage reduction does not make it cheaper todeliver safet y;it simply makes unfunded. More fundamentally,the provision shifts financial risk ofNDIS sustainability ontoparticipants A scheme whose supports can becutby ministerial determination where thereduc ed amount maybe insufficientto coverthesupport.isnottheschemethat participant entered.For families managing2-hour care the prospectofa determinations dropsthe funded rate below actual costisthespectrof unpaidcare hours absorbed back into the householdbackonto carerswhoseown health already atrisk.## 73 What we askDeterminations under section should bes:• Disallowable by either House Parliament, sunsetting Legislation ActunderActas normal.• Made only after independent advice includes consumer representation formal engagement rare disease representative bodies • Subject statutory test Minister must satisfied reduced remains sufficient deliver reasonable necessary specified in plans### Automation administrative decisions (Schedule Part)####What Bill doSections authorise CEO arrange for actions designated provisions includingsection deals contentplans takencomputer program#####Why this fails complex andrare epilepsiesComputer programs well high-volume low-variance decisions Complex rares arelowvolumeandvariancesatypical presentations fluctuating needs episodic disabilitysupports thatdo fit cleanly standard codes.These decision automation handles worst consequences automated error fall on familyseveragingtractables seizurescomplex medication regimeseducation orbehavioural supportneeds.Australia had recent serious experience whatautomateddecisions look like when they go wrong scale######81Bill doessectionsauthorisecEOarrangeadministrativeactionsdesignatedprovisionsincludingsectiondealscontentplanstakingby computerprogram####### Whythisfailscomplexandrareepilepsie sComput erprogramsworkwellforhigh-volumelow-vari ancedecision sComplexandrelep sepsi esar e lo w -v ol um en d h igh var iance atypica lpresentationsfluctu a tingneeds ,

episo dicdisabilit y,andsuppor tsthatdonotfitcleanlyintostandardcodes .Theseared thedecisionautomationhandlesworst,andtheconsequencesofautoma tederrorfallonfamiliesalreadymanag ingintractableseizurescomp lexmedicationregimes, an deduc tionorbeha viouralsupp ortneed s. Australiahashadrecent andseriousexperience ofwhat automa te din decisionslooklikewhentheygowrongatscale. #####What we ask

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

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 provide human-review pathway.

Recommendations In order of priority:

• Amend Section (E)–(F) so limited published research is sole basis refusing supports when impairment is rare; add clinical consensus evidence equal in importance with published studies;
• Require CEO consider whether appropriate treatment reasonably accessible to patient & consult treating clinician if rare conditions present;
• Amend Section B so assessment functional capacity accounts episodes fluctuating disabilities existing support not result underestimate need;
• Disallow time-limited independent advice including consumer representation before making determination under Section A; Minister must satisfy reduced funding sufficient deliver reasonable necessary supports; Excluding evaluations under Section 33 automate decisionmaking participants have rare episodic conditions require automation flags notify low-friction review path way; Establish dedicated rare disease consultation track all rules made new framework formal engagement rare disease representative bodies;

Closing comments The NDIS designed people permanent significant disability families within that population other Australians living complex rare epilepsies provisions identified this submission do target our families but will harm us defining function capacity misses episodic disability define permanence punishes families cannot access specialist neurology by defining evidence systematically disadvantages rare conditions These technical fixes they scheme sustainability prevent foreseeable avoidable harm small identifiable cohort recommend Committee

We plain about how feels inside house more than two decades providing care keeps alive being asked prove again his needs

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

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 waywehave representedhim everydayofhislife.Please listen.

Contact

redacted: s22(1)(a)(ii) redacted: redacted: redacted redacted:

dear [Recipient] We appreciate the opportunity to speak to this proposed Bill and make ourselves available to appearand speaktobill.