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

Submission 1726 SATB2 CONNECT SATB2 Gene Foundation Australia Limited, ACNC Registered Charity | Volunteer-run | Est. 2021

COMMUNITY SUBMISSION

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Senate Community Affairs Legislation Committee Inquiry Submitted on behalf:

• Dalal Dawood Baumgartner: Founding Director, Satb2 Gene Foundation Australia Limited operating as SATB2 Connect in conjunction Genetic Alliance Australia. May 2026

Executive Summary This submission is made in response to The National Disability Insurancce Scheme Ammendment Securing the Ndis For Future Genrations Bill 2026 introduced Parliament On 14 May 2026. This was prepared by Dalal Dawood Baugartner with assistance Kate Alexander Senior Lawyer Both are parents children Satb2 Associated Syndrome Note timeframe Submission prepared under two weeks following Bills introduction Our community entirely volunteer run spread across Australia New Zealand Asia and Middle East have young children high support needs limited capacity rapid policy response no funded advocacy staff Timeframe given consultation legislation significance inadequate make this despite families cannot afford not be heard Our position direct Proposed reforms built around assumptions do hold SATB2 Associated Syndrom rare genetic condition characterised severe permanent intellectual disability absent or severely limited speech significant behavioural complexity complete absence functional safety awareness These high-needs Families people represent among most complex presentations ndis Several provisions of bill will harm them because reform goals wrong mechanisms chosen incompatible clinical social reality what satb associated syndrome actually looks like

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission We are not asking the Committee to reject sustainability objectives. We ask it ensure mechanisms chosen fit purpose when applied to disability that does look like what was designed: Our specific concerns include:

• ‘Appropriate treatment’ test where none exists; universal intellectual & communication impairment of SATB-associated syndrome;
• ‘Directly arising causation’, disputes from complex pathways due single gene change affecting multisystem syndromes, such as those needing support tracing back through such paths; A standardised eligibility assessment framework which doesn’t calibrate depth with clinical uncertainty – a child confirmed permanent condition subject same full process new applicant whose is disputed needs nested model explicit override capacity needed. Standard functional assessments will misread warmth and social engagement coexisting profound ID no safety awareness. Ministerial powers cap community participation funding lifestyle support they can safely be in world, only mechanism. caps on therapy intensity would eliminate intensive block programs most effective approach evidence supports children w/complex comm. impairments. parental responsibility provisions without benchmarking against ordinary requirements reclassify disability support parenting. The loss approved capital funds at plan renewal disproportionately harms families managing time-sensitive assistive technology needs. We make eight recommendations we ask committee act them.

National Disability Insurance Scheme Amendment Bill 2026: Community Submission

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

community experience and policy, supporting families to navigate systems that were not designed for rare conditions, and amplifying voices that would otherwise go unheard — is not only valued by our community. It is necessary For a condition as rare and poorly understood at a systems level such as SATB2 Associated Syndrome having an organisation with Genetic Alliance Australia’s reach credibility advocate alongside us makes material difference whether seen all The families we represent are mild end disability spectrum Every person has intellectual disability most commonly moderate profound every speech delay or absent speech Most nonverbal adulthood Behavioural safety profile significant permanent These complex system manageable disability Families carrying heaviest support loads country invisibly alone

Submission 1726

NDIS Amendment Bill 2026 Community Submission - Behaviours that challenge high frequency documented research.

• Aggression: Shelley et al., 2024; Zarate et al., 2019;
• Self-injury: Shelley et al., 2024;
• Property destruction: Shelley et al., 2024,

References:

• Shelley L Waite J Tarver J Oliver C Crawford H Richards C Bissell S “Behaviors challenging in SATB-associated syndrome: Correlates self injury aggression property destruction” Journal Autism Dev Disord vol(54 no). pp[4179–4194].

Safety awareness permanently absent: A defining and clinically documented feature of SATB Associated Syndrome is permanent absence functional safety awareness individuals cannot reliably recognize danger near roads water heights or any unsupervised setting does not improve age intervention lifelong determines everything about what safe community participation requires.

Dental skeletal involvement extensive dental malformations are documented up to 90% Orofacial anomalies (cleft palate, high arch palatal Robin sequence spectrum associated more severe language feeding difficulties Skeletal abnormalities including decreased bone density scoliosis affect over 90%, approximately one-third reporting fractures.

References:

• Kuo Bolster Fan “Skeletal abnormalities clinical challenges SATB-associated syndrome.” JBMR Plus vol.(9 issue)(no.) ziaf023.
• Pullano V et al.[Expanding Clinical Genetic Landscape SATBAssociated Syndromes Genes vol.] https://doi.org/10.3390/genes16101229

Not progressive but never simple: SATB Associated Syndrome degenerative condition Individuals do lose skills some other rare genetic conditions involve disability however complex needs from beginning changes sustained intensive support capacity communication safety community engagement progress hard-won years appropriate well-funded interventions achieve.

Seizures minority primary challenge clinically recognizable seizures affecting only a small percentage of individuals with SATB Associated Syndrome for our community feature some not defining challenge Primary intellectual disabilities burden carried by the intellectual impairment and permanent safety awareness deficit.

References:[Zarate Y Bosanko K Fish J] GeneReviews®[NBK458647]. University Washington https://www.ncbi.nlm.nih.gov/books/NBK458647/

The Australian picture evidence own community first study families living SATB Connect Munro et al., 2025). Of responding across five states territories rural metropolitan reported challenges communication reasoning dental care challenges behavioral challenges Key therapy barriers availability multidisciplinary services access cost educational barrier lack multidisciplinary services included in survey data provided below:

• Communication:
  • Availability (64%)
    • Lack of Access to Multidisciplinary Services (57%) Cost (43%). Educational Barriers Include Lack Multidisciplinary Services (60%

References:

• Munro “Skeletal abnormalities clinical challenges SATB-associated syndrome.” JBMR Plus vol.(9 issue)(no.) ziaf023.

SATB2 Gene Foundation Australia Limited | May, 2026

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026 Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

and educators’ unfamiliarity with SATB2 Associated Syndrome (40%). Families reported unmet needs across therapy access, specialist practitioner availability, and social support. The findings are concrete; they describe barriers these families encounter daily, risking compounding due to reforms in this bill.SATB2 Associated Syndrome is listed on RARE Portal—Australia’s national rare disease information resource—which confirms no Australian clinical care guidelines exist for it.Diagnosis requires genetic testing often involving chromosomal microarray followed exome sequencing.Due to complexity requiring multidisciplinary teams spanning general practice through psychology and behavioral therapies over a lifetime.The absence of such guidelines represents systemic failure.Every clinician encounters starts from scratch every family must become their own expert simply accessing appropriate care.SATB2 Connect’s community-led research partnerships documented Rare Voices Australia RAReST Project demonstrate small volunteer organizations working within rarity space can produce meaningful evidence where none previously existed.That work should not be done by unpaid parents.But until system invests into communities will continue.Munro et al. (2025). Exploring the health education & social support needs individuals diagnosed Satb2 associated syndrome living australia.Rare31-14 https://doi.org/ 10 . together toolkit.Having invested time under incorrect or incomplete diagnosis The evidence base less than decade deep.These facts Bill provisions reason several provisions will not function as written when applied to this community.

What This Means For The Bill

There treatment primary impairments SATB2 Associated Syndrome condition named in Diagnosis frequently whole genome sequencing only accessible through program standard pathway families may spend years under an incorrect complete diagnosis Evidence base is less than decade deep These facts are incidental bill’s provision reasons several provisions will not function as intended when applied to this community.

Current Challenges And How The Bill Makes Them Worse Our already navigate a system that does understand SATB2 Associated Syndrome Planners do know assessors have seen it Diagnostic complexity means some families spend years establishing eligibility High-needs profile every plan cycle battle maintain what should obvious.Bill drafted does fix those problems embed new ones section names each relevant provision identifies current challenge our families face explains specific risk reform creates.

Appropriate Treatment Requirements Section)

The introduces requirement person must undertaken all appropriate treatment (evidence-based could improve reverse alleviate impairment before permanent.SATB2 Gene Foundation Australia Limited | May, Connect. May,

National Disability Insurance Scheme Amendment

Securing NDIS for Future Generations - Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Current Challenge.

Families already face difficulty demonstrating permanence for conditions named in 2014 with limited published evidence bases; planners unfamiliar with SATB2-associated syndrome sometimes question whether such impairments are truly permanent or if more intervention might alter them;

The Bill makes it worse:

The framework’s premise that permanence should be assessed against what treatment could achieve assumes an existing landscape where no treatments exist to reverse intellectual disability or communication impairment at core of SATB2 associated syndrome—intensive early interventions support development rather than alleviating genetic disabilities which require different approaches requiring families demonstrate they have exhausted non-existent treatments, further compounded diagnostic complexity often necessitating whole genome sequencing accessible through research programs not standard pathways—a family whose child spent years under a global developmental delay diagnosis before receiving confirmed genetic results cannot produce clean treatment histories assumed within frameworks; bill explicitly excludes financial and geographical access as relevant considerations, directly disadvantaging regional/rural areas unable timely accessing specialist services inconsistent CRPD’s principle on discrimination.

Reform Section (Section requires demonstration all appropriate has been tried before is confirmed).

Risk Families living with SATB2 Associated Syndrome will need prove attempted nonexistent primary impairments first diagnosed condition 2014 due complex diagnostics many families can’t provide evidentiary trail required by the framework leading wrongful denials.

Directly arising causation test section)

Bill narrows fundable supports those eligible impairment direct immediate source cause origin’ needs connection between these needs and core genetic conditions intuitively obvious someone who doesn’t know them; makes it worse: multisystem nature single gene change produces multiple symptoms including but skeletal fragility sleep dysregulation sensory differences each arises from same source mediated pathway not singular causal step Zarate et al.’s quantitative morbidity analysis documents this across distinct clinical domains. SATB2 Gene Foundation Australia Limited | May 2026

National Disability Insurance Scheme Amendment Bill 2026

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026 Community Submission

Under the ‘directly arising’ test, the Agency may challenge whether each downstream need individually meets direct causation threshold. Does dental support arise directly from Satb-variant or palate anomaly it caused? Does feeding therapy arise through oral motor impairment that flows genetic change? each question potential denial for families stretched thin managing complex system; this administrative uncertainty systematic exclusion. citation: zarate y.a et al (2023) Quantitative phenotype morbidity description satb-associated syndrome bio med research international article8200176 https://doi.org/10 . The reform Section requires eligible impairment be immediate source needs. risk living with SatbAssociatedSyndrome produces cascade of support needs multisystem pathways.’Direct Immediate’test incompatible complexity will generate disputes about every down stream need: dentalfeeding sensory skeletal sleep produce denials based interpretive technicality rather than clinical reality.

Functional capacity assessment The bill provides standardised functional capacity informed Technical Advisory Group raises concerns people confirmed permanent genetic conditions such as SATB Associated Syndrome First nothing in draft require depth calibrated to degree Clinical Uncertainty Second standardized tools misread observable presentation does not reflect underlying Impairment current challenge Families struggle when assessors unfamiliar meet child warm socially engaged visibly responsive underestimate intellectual disability safety deficit severity behavioural profile contexts same time families dealing de novo diagnoses face processes distinguish cases where Disability clinically certain unclear disputed result over-assess and misassess community Bill makes worse For person with SATB Associated Syndrome, confirmed by Genetic testing documented published literature involving moderate profound Intellectual Disabilty often no genuine Clinical Uncertainty eligibility full Standardized functional capacity Assessment adds little evidentiary picture burden distress cost for families framework should adopt nested approach (as occurs aged care through Integrated Assessment Tool) diagnosis permanence already established shorter pathway available reserved real uncertainty model must also preserve explicit override capacity qualified clinician attest Permanent Eligibility participant’s Presentation clear but readily captured standard tool At the same time

standardized instruments measure function at point In Time designed capture specific paradox SatbAssociatedSyndrome individuals present Warm Socially Engaged simultaneously

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

have no safety awareness, severe to profound intellectual disability and high-frequency aggression and self-injury. GeneReviews(2024) documents characteristic jovial friendly personality as clinical features of condition. an assessor unfamiliar with SATB2 associated syndrome likely weighs presentation heavily underestimates everything underneath it.The same risk applies in reverse communication child uses AAC device or eye gaze system non-communicating but standardised instrument designed to capture AAM mediated communication will record capacity accurately plan built on that assessment inadequate from day one.

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission the condition. A ministerial cap without individual assessment is not a sustainability measure.Itis themechanism through which these individuals can safelybe partoftheworld.

Ministerial powers to cap therapy intensity(section33(2EA))

TheBillwouldallowtheministertodeterminemaximumfundinglevelsforspecifiedsupportsincludingtherapyintensity.Thecurrentchallenge.FamilieslivingwithSATB2AssociatedSyndromealreadyfighttoaccess intensiveblocktherapyprogamssuchasNAPA(NeurologicalandPhysicalAbilitation) thattodelivethreefourweeksofc oncentratedmultidisciplinarytherapyatafrequencythatweeklysessionscannotreplicate.Theseprogrammarewheretheadvancementsthatchangeachild’strajectoryhappen.AccessingNDIS fundingforthemandrequires sustainedadvocacy andregularlychallenged.T heBillmakesitworse Theresearchon-intensive blocktherapyforeach withcomplexcommunicationneurodevelopmentalprofiles demonstratesthataccentuatedhighfrequencymulti-disciplinary interventionproducesgains that weekly sessions spreadacrossayear cannotreliably replicate.Fornonverbalchildrenspeechandleanguage gainsinparticulardependonsustained, intenseinput.S nijders Blok et al. ( 2021)emphasizethatifterventionintensitiesmustmatchtheseveritytype ofthe communicationimpairment.Aministerialdeterminationcappingtherapy ata fixedannualhours threshold wouldeliminate theintensiveblockmodel entirely.Thisisnotareductioninservice Fora child whose mostsignificant developmental progresscomes throughathree-weekintensive program it is thee liminationofthet approachthatworks. SnijdersBlokLGoosenY.M.vanHaaften.L..van HulstK.FisherS.E.BrunnerHG,EggerJ.I.M.& KleefstraT(2021).Speech-language profiles in context cognitive adaptivefunctionings SAT Bassociated syndrome.GenesBrainandBehavior The reform: Section33 to capfundinglevelsfor specified supports including therapy.Risk for families livingwithSATBAssociated Syndrome An hours-basedcap ontherap y intensitywould eliminatethe intensive block ther apymodel evidencebasedapproachforeach withcomplexcommunication impairmentFor familie slivingw ith S AT BA ssoc i ated Syn drome thisisanotcostreductio n.Itisthere movalointervention thatproducesdevelopmentalprogress.

Parentals responsibilityprovisions (sections 34(G) and 34(H)) Sectionsdo notdefineparentalresponsibilitestablishpresumption parentsaresponsibl e providing substantialcareandsupportincludingsupervision personal care, transport emotional supportbehaviouralsuppor t otherassistance activitiesdaily liv ing would reasonablybeexpected parentchild same age withoutdisability.TheCEO mustnotapproveasupp ortifitsprimarypurposeis to reduce parentalburdenbelowwhat isreasonably expected. Thecurrentchallenge Familiesalreadynavigateplanningprocesseswhereintensityof theircaringroleisminimisedormisunderstood Whatdescribed as parenting plan review familylivingS A T BAssociatedSyndrom esomething qualitativelyquantitative differentfromanyordinary parentingexperience.SATB2GeneFoundationAustraliaLimitedMay

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission The Bill makes it worse.

• Benchmark ‘a child of the same age without disability’ sounds fair but risks being applied at category level instead of intensity; every listed category—supervision, personal care, transport, emotional support, behavioral support, activities of daily living—is something all children require to some extent; such application would treat these categories equally under parental responsibilities even though typical children also have them, treating such requirements entirely differently in practice when considering those with SATB2 Associated Syndrome. The allied health framework underlying each supports speech pathology: every communication strategy requires development and consistent implementation via trained workers like speech pathologists who understand nonverbal needs fully. This is not incidental—it’s a clinical architecture through which other supports function.

Supervision All primary school kids need supervision—but supervising one needing continuous active physical interception due specific knowledge about their profile, movement patterns speed triggers becomes complex as they lack safety awareness.

Taking this kid anywhere near roads or water feels akin to goalkeeping where you must continuously position yourself between hazards. This isn’t just supervision—it’s skilled work following plans developed by behavior practitioners/occupational therapists implemented consistently by qualified staff alone can do safely while attending another task simultaneously. Furthermore most mainstream services providing out-of-school hours (OOSH) vacation camps extracurriculars are unsuitable for those requiring high levels of support the risk too great for acceptance into these settings community support remains essential it doesn’t reduce parent burden below what any could reasonably bear only mechanism allowing child access alongside peers during holidays outside regular schooling funding does not substitute parenting care inclusion looks different here

Personal Care Young all require personal care but that involves OT assessment positioning technique equipment SP input on communicating steps reducing distress,

consistent execution per plan toilet training—core personal care milestone—a process demanding patience repetition emotional space staying calm over years without such support families cannot begin For children with SATB2 this milestone never passes As grows physically more challenging two adults often required many tasks documented injuries carers face not ordinary parenting same age without disability clinical planning coordinated implementation needed. Transport A child needing SATB2 travel in a vehicle independently catch school bus or travel second person managing safety and behaviour needs persist as adult transport need is not temporary responsibility diminishes growing toward

National Disability Insurance Scheme Amendment Bill 2026: Community Submission

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

• Independence. It’s permanent funded support need; categorizing it as ‘parental’ does not reflect this reality due all children needing transport for different reasons than independence alone suggests; Emotional Support: All children require emotional support from parents but a child with SATB2 Associated Syndrome requires strategies developed specifically (speech pathologist/occupational therapist) since regulation & communication inseparable when dealing nonverbal individuals who also have significant sensory profiles. What looks like emotional support is consistent application of clinically-developed frameworks rather than genuine warmth or love which cannot substitute these needs effectively; Behavioural Support - This category poses most danger per bill explicitly listing behavioral support under parent responsibilities, specifically for SATB2 Syndromes where behavior management involves formal plans and restrictive practices authorized by registered practitioners trained workers consistently implementing them while assessing ensuring necessary input to help communicate their needs safely managed without professional intervention documented aggression in >75% self-injury at 43%, property destruction up-to91%. These are behaviors parental care can’t resolve; The Growing Child: Parenthood framework must account growing trajectory of child with syndrome, gap between ordinary responsibility disability-related support widening significantly over time requiring more intensive support even if same profile exists older age leading physical injury carers face providing assistance. capacity argument: Funded supports don’t replace parental duties; they create conditions allowing effective exercise thereof especially during periods needing sustained effort such as toilet training impossible otherwise due capacity consumed immediately caring demands The Broader Consequence: Reducing funded supports increases family burden causing injuries physically. Research shows main caregivers reduced employment probability 10-12 percentage points full-time carer household income below $68k (PMC). When leaving workforce because cuts tax revenue lost welfare payments increase health system demand grows NDIS designed enabling carers remain workforces cutting through provisions reverses these gains relocating costs elsewhere often higher total expense.

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission The reform: Sections 34(1G) and 34(1H) establish a presumption of parental responsibility for substantial care and support of children across six named categories. Risk for families living with SATB2AssociatedSyndrome:Thesixcategoriesuseordinarylanguage thatdescribesthingsallchildrenneedin someform.Appliedatthecategorylevelrather thanthe levelofintensity,skillrequirement,andclinicalcomplexity,thebenchmarkwill reclassify disability-specificsupportas ordinaryparenting.Supervision,personalcare ,transport,emotionalsupporthandbehaviouralsupportandalldailylivingforachildwithS AT B2 Associated Syndrome arenotwhatthosewordsmeanforeachildewithoutdisability.E achrequiresa clinicalframework developedby alliedhealthprofessionals - occupational therapists,speech pathologists,b ehavioursupportpractitionersandle mplementedconsistentlybetrainedsu pportworkers.Thatis not parenting. It is coordinated,multidisciplinarycl inicalplanimplementation.The benchmarkmustoperate atthenivelointensit yandclinica l complexity,nott categorylabel.

Restriction_of_reassessments_and_loss_of_capital_funding_at_plan_renew al TheBillnarrows thecircumstancesforscheduledreassessment andre movestherolloverunspentcapital fundingat plan renewal .

The current challenge.Familieslivi ngwit hSATBA ssociated Syndromeregularly needto requestmid-cycle reassessment astheirchild’sneeds evolve: newcommunication needs,newbehave ies,equipmentneed sidentifiedthroughtherapy.Accessingre assessmentisan alreadydifficult.Capita lfunding for assistive technology,particularlyAACdevices (central tothe communicationofnonverbali ndividuals),isa lsusjecttolongprocurementlead times.T he Billmakes it worse.Restrictinge reasmentaccesswill trap familiesinplans thatno longerreflect their child’ sn eeds.Removing capitalfund ingrollover willmeanthat familie sw hose AACdeviceorotherassistivetechnologyi sapprovedbutnotyetdelivered ata plann ewal ,duetosupplychain delays,asses smentwaitingperiodso rprovideravailability,w ill losethefundings andberequiredtostartthesteprocessagain.Foranon verbalchil d,the loss ofanapprovedcommunic ationdevicenot an inconvenience.Itisadirect reduction intheir capacitytocommunicate. Riskfor fam ilieslivingwith SATB2AssociatedSyndrome:Famili es living withS AT B2 Associated Syndromewil l be trapped inp lansthat no long errefl ect theirc hild ’sn eed s.AACand otherass istivetecnolog yfunding approved but not yet expended,due t factorsoutside family’scontrol,wi llbel ostat plan renewal .Thechildpay sthecost. 4.OurCommunity’sVoice Thefollowingaccountsaredrawnfromfamiliesliv ingwit hSATBA ssociated Syndrom ein Australia.Theyarenote edge cases.The aretheexperienceofourcommunity,statedinth ordinarylanguageo fpeoplewhogetupeveryday,n avigateasystemnotinbuilt forthem,and do n otstop.Charlie—aged5,NewSouthWales Charliestartedschoolthisyear.Hehas S A T BA ssoc iated Sy ndro me,c onfirm edjustbefore hisfour thbirthday,aft erad ia gnosticjourneyincludedrequiredchromosomalmicroarray,

SATBGeneFoundationAustraliaLimited | May 2026 SATBConnect ,May 2026

National Disability Insurance Scheme Amendment Bill 2026

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026 Community Submission

karyotype analysis, condition-specific testing, and ultimately whole genome sequencing through a research program. Before that confirmation, he had a global developmental delay diagnosis. Charlie is nonverbal. He has no safety awareness. He requires one-to-one support in every community setting. He attends School for Special Purposes. He cannot be enrolled out-of-school hours; multiple services have declined his inclusion because risks associated with absconding and his personal care needs are high. His support worker takes him to where after school happens so can run alongside seven-year-old sister friends. His community participation funding (received since November) means maintaining friendships built preschools attending family gatherings parks birthday parties part of living community mother single parent lawyer work.

Kate Charlie’s Mother A ministerial determination cutting community participation would not policy adjustment Charlie It end pathway which he could participate community very social loves play other kids repercussions cutting supports far reaching our family.” Under as drafted Charlie’s family faces: appropriate treatment test applied treatable primary impairment directly arising cascade multisystem syndrome standardised assessment may record warmth without capturing deficit potential caps on intensive therapy programs reductions participating funding loss approved AT if supply delays past plan renewal. Charlie story shared consent.

Naomi — aged 12 New South Wales

Naomi years old SATB Associated Syndrome caused de novo chromosomal deletion chromosome q33 encompassing SATB gene genes She communicates AUSLAN key word signing communication app iPad Attends St Lucy’s School students intellectual disability Wahroonga infectious laugh Loves frogs colour yellow music dancing scanning items supermarket account everyone knows her little bit bossy entirely herself. Naomi diagnoses extend beyond genetic condition moderate intellectual disorder Autism Spectrum Disorder Level ADHD anxiety cerebral palsy GMFCS II-III dyspraxia eosinophilic oesophagitis cleft palate repaired silent aspiration complex dental disease hearing loss urinary and faecal incontinence sleep onset maintenance difficulties scoliosis low bone density unexplained joint pain recurrent respiratory infections under care more than fifteen specialist clinicians takes seven medications daily Naomone-to-one support every aspect life cannot be left unsupervised requires full personal care shower dressing toileting feeding at risk choking silent aspiration meal focused supervision eating absconds warning road safety SATB Gene Foundation Australia Limited | May 2026 SATB Connect, May 2026

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Naomi is a young girl whose care needs are intensifying as she grows older. Her adaptive stroller serves as her safety device when broken or awaiting repair, making travel impossible until repaired; she requires two adults due to increasing strength size & presence year-on-year; this exceeds typical adolescent development requirements. The mother sustained neck/shoulder injury & chronic back pain from caring duties, fatigue reported similarly by father. a formal behavior assessment completed August ’24 found Naomi’s functioning at Serious Concern across all subscales home/school with Extremely Low Adaptive Functioning rating. Caregiver Burden Scale rated Severe/Moderate-Severe for both parents reporting physical injuries mental health deterioration social isolation fear of inability continuing care risk identified. This report supports urgent mid-cycle review because funding inadequate for actual support needs under proposed restrictions on participant-request reassessments, harder not easier accessing that review. Review modestly improved worker hours. Two-hour weekly time has enabled independent communication through AUSLAN and communication devices transformative milestone conditional upon ongoing supports removal/reduction halts progress investment in early intensive sustainable support the bill proposes caps ministerial powers put risks. Despite extensive evidence provided practitioners speech pathology occupational therapy specialist medical team NDIA denied approval third round review multiple clinicians hundreds pages supporting no outcome practical effect taken away Naomis voice Committee consideration current system families knowledge capacity resources mount clinical case without those resources simply silence The same pattern played out regarding her wheelchair took approximately two years initial request to approval during which she was without appropriate mobility support fell repeatedly sustaining injuries regression family severely restricted ability go together outings manageable equipment became unsafe abandoned Physical toll worsened already documented psychological toll watching daughter’s function decline while fighting administrative process cost-benefit analysis real lasting consequences.

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Naomi also has a younger sister, Esther, who is herself on the NDIS and has her own diagnosed support needs. The family navigates two complex NDIS plans simultaneously, with no funded coordination support proportionate to that complexity.When Naomi’s needs escalate,Esterh’sneeds gounmet When Naomis plan review requires attention ,Estherstheapies get deprioritised This notafamily management issue Itthe foreseeable consequence of designing asystemthat assesses individuals in isolationand doesnot accountforthecumulative realityof families where more than one personhascomplex disabilitysupportneeds .

Dalal,Naimos motherandsatbConnect Founding Director Every year,theNDS process asks us to sit down anda catalogue everything Naomin cannot do Every deficit.Every limitation.Every thingthesystem needsto see tot justify continued funding.I want Committeeto understand what thacosts —- not just intimeanda paperworkbutinwhat itdoes toe familytoberequiredyear after yearto seetheir child only through theneol of whas shecannot dot yet.Naomiisanotalist ofinabilities.Sheisa pers ons he hastothings tooffer when shais given theright suppor t access them The system we are fighting toprotect should be built on that understanding— -no nannual rehearsals incapacity. Weare notas parents.We arerunning anorganisation bridging the gap between healthsystem,thedisabilitysystem,andfamilies who fallthrough both That work is unpaid and unrecognised.Wedo alongsidemanaging our ownhealth. I have myown health conditions andre carrythem alongsideNaomis.The assumptiontha can simplybe asked todo mor orthat parental responsibility coverswhatare already doing doesnot reflect therealityo ur lives.

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission Therapy remains essential. Speech pathology extends her use of Key Word Signs and her AAC device, supports the constant stream of new staff to communicate with her effectively. Physiotherapy keeps her mobile; occupational therapy builds her daily living skills; but finding therapists who desire work in regional NSW continues as an ongoing struggle on one occasion, a single mother named Rachael went more than twelve months without accessing her allocated therapy hours due provider unavailability then had those cut from her plan without any consultation despite need remaining This consequence will be entrenchment: funding approved genuine needs lost because supply chain workforce constraints made impossible time usage. If community participation were reduced she would lose activities loves friendships built at home where housemates significantly older some developing dementia Her world narrow parents clear about what follows increased frustration escalating behavioural issues For Rachael,community not supplementary it gives life meaning structure Kathryn,Rachael’s mum Policy makers must consider personal story assess people based formula diagnosis IQ level There always opportunity discuss person’s needs best met Remember using NDIs are people pieces machinery Rachael’s story shared consent Henry — Aged 13 New South Wales Henry is years old lives Randwick Sydney his mother Jo three siblings attends school for students disability weekly supports include occupational speech path music gym training Saturdays goes out carer he attend camps during holidays Henry basketball skiing surfing and sports Jo a single parent four children full financial responsibility family describes experience managing inadequate support while parenting exhausting What don’t get with I having make up myself Spreading yourself across four ensuring they all treated same The NDIS has begun to narrow Henry’s life Overnight camps been cut limiting opportunities develop independence connection outside the home Surfing denied as recreational activity but deliberate therapeutic choice situational awareness water safety skill particular importance young SATB2 Associated Syndrome Speech pathology occupation therapy capped fought hard have speech reinstated Henry turning fourteen social needs increasing moving adolescence Jo beginning plan pathway employment Support current wellbeing building skills connections shape adult life Capping cutting community participation stage does save money removes developmental scaffolding most needed

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Jo, Henry’s mum

Policies are never suited to a group. They need to be individualised. It is awful to keep being told ‘no’ when we have supporting genetic documents to explain what our children’s capabilities are.” parents and carers looking after our children live in a constant state of grief which changes with each situation.“ Just because our children are disabled doesn’t mean they always have to hang out with other disabled people.This requires strong senseof empathy from the community.“Henry’s story has been shared with his mother’s consent.These are not extraordinary stories.They are ordinary lives of familiesinourcommunity.TheBillasdraftedthreateneachthemnotthroughmalicebut throughdesignchoicesthatdidnotaccountforwhatSATB2AssociatedSyndromeactuallyrequires.

Sustainability Requires Looking at Full Ledger This Billispresenteda sustainability measure TheCommitteeshouldbesatisfied thatmechanismchosenwill actually produce sustainable outcomes,notsimplyshiftcostfromthenDISOnto familyhealthcaresystemsandcrisis servicesWeare nosatisfiedAndwanteexplainwhyplainterms

Children grow Their needs do no diminish Naomi12Charlie5ThechildreninnoussocietyarenostaticTheygrowphysically insizestrengthcomplexitytheirpersonalcarewhile theirdisabilityprofileremains. Thesupportsthatafamilycanmanagewhena childistfivebecome physically impossible withoutfundedassistancebythetime thatechildisteenager.This is nota failure parenting.It isthebiology growingbody meeting permanence complexgenetic disability Theparentalresponsibilityprovisions in the Billdo account for this trajectory A frameworkbenchmarks parental responsibility against whatordinarilyexpected a child same agewithoutdisablemust also grapple fact childrenwith SATB 2 Associated Syndrome grows gap betweenordinary parentals responsibility and disabiliyrelated care need widens it does not close Reducing supportsgrowing with complexneedsdoes reduce care load It transfers entirely onto parentsbodies already bearing physical cost Planning supported living arrangements adultsSAT BAssociatedSyndrome presentoneNDISatbestsystem plans transition investing early so crisis adult unmet complex needs agingparents can longer providephysical care overwhelm every system at once Cutting current funding delay thatneed accelerates crisis makes emergency intervention unavoidable.

Annual deficit rehearsal costs families

SATBGeneFoundationAustraliaLimited | May, 2026

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

Submission 1726 SATB2 Connect | NDIS Amendment Bill 2026: Community Submission Every year, families living with SATB2 Associated Syndrome are required to document everything their child cannot do. Every functional limitation. Every deficit. Every inability the system needs to see in order to justify continued funding. This is how the NDIS currently works, and the Bill, in its current form, intensifies rather than reforms that dynamic. Language matters. The difference between ‘cannot cross the road safely’ and ‘has not yet developed road safety awareness with the supports currently available’ is not a cosmetic one. It is the difference between a planning framework that sees a person’s trajectory and one that catalogues their incapacity. The annual rehearsal of deficit, repeated across every plan cycle and every supporting report, accumulates. It shapes how families see their children. It shapes how professionals see them. It shapes, over time, how people with disability come to see themselves. We are asking the Committee to consider whether a genuinely reformed NDIS planning framework could be built on strengths-based, person-first language, not as a surface change but as a structural one. The goal of the scheme is to fund the supports that allow people with disability to live good lives and contribute to their communities. The language and design of the framework should reflect that goal, not undermine it.

5.3: Families running these organisations also have costs - System-wide

SATB2 Connect is run entirely by volunteers; most parents who care for SATB2 Associated Syndrome kids bridge gaps among health systems, disabilities system research community & families falling into all three areas. We prepare submissions like this in hours caring our own children managing specialist appointments navigating reviews sustaining our own health best we can Many us living invisible conditions chronic illness cumulative physical consequences years high-intensity caregiving. Not simply carers complex lives without recognition allowing sustainably When government speaks reducing burden family rarely reduced actual carrying Economic cost inadequate support visible even unmeasured Research consistently demonstrates given appropriate support make meaningful contributions workforce economy communities Investment produces economic returns through both persons work when funded reduces demand services. When primary caregiver cannot work because funding insufficient That loss parent sustains injury from lack ongoing medical treatment Health system cost Family reaches point formally documented registered practitioner relinquishment risk crisis borne every simultaneously Reducing NDIS expenditure mechanisms Bill does eliminate these relocates them families hospitals accommodation emergency services compounds them Committee require long-term impact total system costs forward estimates assessed before proceeds ask recognize people organizations advocate sustainability scheme’s success.

National Disability Insurance Scheme Amendment

Securing the NDIS for Future Generations - Submission 1726

SATB2 Connect – NDIS Amendment Bill 2026 Community Submission

Recommendations

SATB2 Connect makes these recommendations:

• Recommendation Amend Section 25A so if no evidence-based treatment exists against primary permanent disability impairments attested by qualified clinicians further demonstration is unnecessary. This applies particularly when dealing rare recently named genetic conditions whose diagnostic pathways involve whole genome sequencing rather than standard clinical testing due their developing evidence base and complex nature requiring holistic assessments beyond typical treatments.

The legislation should explicitly provide proportionate light-touch confirmation pathway for severe permanently disabled participants with reasonable dispute. The nested assessment model in Aged Care Rules’ Integrated Assessment Tool (section 62–5) provides a suitable template to this approach where genuine uncertainty requires an expert clinician’s override of algorithmic outcomes without full functional capacity tests being mandatory unless necessary. * Reinstate financial access to specialist services as relevant considerations within ‘appropriate treatment’. This aligns CRPD non-discrimination principles.* -Amend section (34(1)(aa)) directly arising test clarifying that downstream support needs from multisystem presentations are not excluded under the NDIS. Holistic, comprehensive clinical evaluations must be used instead linear causality tracing methods. -Mandate Technical Advisory Group overseeing standardized function capacity include expertise on rare newly diagnosed genetics syndromes multi-system profiles social presentation masking underlying impairment. Assess instruments need validation across all applicable conditions not just common ones covered currently -Include individual exemption mechanism allowing NDIA application exemptions categorical caps Section 34A or other similar provisions.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

• section 33(2EA)where their individual needsassessment establishes they require supports above the cap level,*withtheNDIA’s decision subject toreviewbytheadministrative Review Tribunal.

Any determination reducing fundingmusthave regardtoAustralia’sobligations under Article 19 ofthecrpdand toi ndividual safety profiles before taking effect.

Recommendation 6:

Before any ministerialdetermination takeseffectunderSection 34Aor Section 33(2EA), ther easoning anda n dical evidence underlying it should be publicly available,andthedeterminati onshouldbesubject to meaningful Parliamentary scrutiny.[Familiesa nparticipantscannot assess whether adetermination is justified or challengeit if th ebasisforitisnotvisible.Fora community like ours where every support categoryis essential and none isthe discretionary, transparency isn ot a procedural nicety.Itistheminimum conditionfortrust inthesystem.]Requireanydocumentsincorporated by reference indeterminations affecting practicalfunding limits mustalsobe sub jectt oParliamentary oversightbeforeupdated values takeeff ect.

Recommendation7:

Requirethatan y assessmentof parental responsibilityundersections 34 (G) an d 34(H)be applied atlevel intensity,skill requirement,durationand clinical complexity,* not merelycategory.[Asupport needdoesnotin within ordinaryparentalresponsibilitymerely because ith shares alabel withsomething typically developing children also require.ForchildrenwithSATBAssociated Syndrome,eachcategorylistedins sections 34(G)a nd (1H)requires aclini cal framework developedby allied healthprofessionaland implementedb yt rainedsupport workers.Thatisanot parenting.The benchmarkmustreflect that distinction.“]

Recommendation8: Providethat capital funding approvedwithinaplan doesno t lapse ata n plan renewalwhere the failure to expendisa tt ributableto factors outsidethe participant’s control including supply chain delays,a ssessmentwaiting periodsa np rovider unavailability.SAT B2Gene Foundation Australia Limited | May 2026 SATB Connect,May 2026

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

We recognise that the NDIS faces real sustainability challenges and that reform is necessary. We are not asking the Committee to abandon that project, but we ask them ensure mechanisms chosen fit purpose when applied to a community with disability different from what was intended here.

The syndrome formally named eleven years ago has built an evidence base over those decades; families have been advocating since then; our submission comes in two weeks of caring for children. This work aligns closely with Genetic Alliance’s advocacy efforts which help submissions reach decision-makers timely.

References

• Kuo, B., Bolster, M.B., Fan W.. The skeletal abnormalities their clinical challenges satb2-assoc syd JBMR Plus, ziaf023. https://doi.org/10.1093/jbmpl/ziaf023
• Munro N Abouharb M Dawood Baumgartner D Wilkes Gillan S Parsons D L Strnadová I Palmer E.E Chen R Exploring health education social support needs individuals diagnosed with Satb2 Associated Syndrome and families living in Australia Rare 3–14 Link
• Pullano V Shukarova Angelovska E Ferrero G.B Metodij K.I Expanding Clinical Genetic Landscape of Satb2-associated syndrome Genes 16(10) e1229 https://doi.org/10.3390/genes16101229 Rare Voices Australia Case study Partnering university researchers fill gaps knowledge resources about SATB2AssociatedSyndrome Taking action together toolkit Link RARE Portal Link Shelley L Waite J Tarver J Oliver C Crawford H Richards C & Bissell S Behaviours challenge Satb2associatedsyndrome Correlates selfinjury aggression property destruction Journal Autism Developmental Disorders (54)(11), p[4179][4194] https://doi.org/10.1007/s10803_023_06123_2 Snijders Blok L Goosen Y.M van Haafen L van Hulst K Fisher SE Brunner HG Egger I M Kleefstra T Speechlanguage profiles context cognitive adaptive functioning in satb2 associated syndrome Genes Brain Behavior, Article e12761 https://doi.org/10.1111/gbb.e12761 Thomason A Pankey E Nutt B Betz S Keaton L Goin Kochel R.P Shayota BJ Zarate YA Speech language feeding phenotypes of Satb2-associated Syndrome Clinical Genetics 96(6) pp.[485–492][https://doi.org/10.1111/cge.13619] Ukrita N Mizuno S Haginoya K Ohashi H Fukushi D Hirasawa K Kosho T & Mizuno H Functional analyses SATB2 variants reveal pathogenicity mechanisms linked with SATB2associatedsyndrome American Journal Medical Genetics PartA (197)(6), p[e64005] Link Zarate Y.A Bosanko K Fish J SATB2AssociatedSyndrome In Adam Mirzaa Pagon Wallace Bean Gripp Amemiya Eds GeneReviews®[NBK458647]. University Washington Link Zarate Y.A Fish J.L SATB2 Associated Syd Mechanisms phenotype practical recommendations American Journal Med Genet Part(A). https://doi.org/10.1002/ajmg.a_38022
• Zarate, Y., A Steinraths, M Matthews Smith W.E Sun L Wilson L.C Everman D.B Liebelt J Bamshad M.J Nickerson D.A Blue E.E Gregor A Zweier C Huffels A Kleefstra T Snijders Blok L Satb-associated syndrome in adolescents and adults AMJGA 185(8) pp.[e][https://doi.org/10.1002/ajmg.e] -Zarate,Y,A Yeargan B & Bosanko K Quantitative Phenotype Morbidity Description of satb-assoc-synd BioMed Research International (Article: e8200176) Link SATB2GeneFoundationAustraliaLimited | May 2026 SATB Connect ,May 2026