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

Submission 2280 The NDIS is an invaluable resource that supports not only people with disabilities, but also those who care for them. My experience with the NDIS has been through my sister who has a “” daughter,” which has Cri du Chat syndrome,a rare genetic disorderthat impacts every aspectofherlife includinghers abilitytomovecommunicateandto perform everyday tasks thathmost access withouta second thought. Being “s auntyhasbeen life changingfor me too.Sheisan inspirationtosearoundshebecauseofterminationandsamanahdewit.BeforeI knew ,if I saw apersonwho had obviouschallengeswith gross motor skills such as walking,I would seethe deficitthatarey werenotable towalk normally.Nowwhen Isee someonewalking inspite ofobvious challenges.I seetheresultsof hours oftreatmentoftentivebutgentle encouragementfrompeoplearoundthem andtheir own determinationin having overcome major obstaclestha have neverhad to face dueonly chance.My sis teristhe main carer,and although she hass built community around her fors supportthis hasteensthrough herefforts deteination She fights fiercely forth rights tore xperience thenormal joysandy day-to-day things that most others take forg ranted - thingss like goingtoschoolor an outingtocafe for ahot chocolate with friends, or attendingafamily event.But this shouldnt need be a fight.Itshouldbeminimum expectation wewould acceptforcitizen o f developed country in the 21st century.While my sister tends share mostly highs on social media those moments when is experiencing joyoflifeand normalcy each these momentshas only been possible because work has done behind scene make simplemomentspossible.

The proposed changes how permanence defined are concerning.Cri du Chat syndromeis genetic conditionthat lifelong there no cure; however,” needs not fixed.When was toddler lifting manageable helping small child personal care unremark able. “ as teenager deserves same dignity any other year old girl.Because” longera toddler but stillneeds help mobility self-care communication leave house takes careful planning coordination.She requires equipment assistwithmobility andcommunication consideration needs given access buildings essential facilities such toilets suitableher needs This practical matter it dignit yequity .” require physical assistance get into out car move around space Continually providing support becomes more taxing she grows adulthoodphysical strain tollsister health back pain common issue at times requiring medical intervention.Currently through NDIS funding impressive organisational efforts ofmy sis terable havecarers to assist her with some challenges which take sti ain offsis manytimesno carer presentrequires full time support.Any definition functional capacity must account reality that change across lifetime What required 5 different from what she requir esat again at The little things life going school hanging friends everyday experiences most would consider basic expectations for a teenage in Australia Becauseofh er communicati onchallenges uses eye-gaze technology communicate others Equipment expensive bulky training use also communicates using keyword signing gestures verbal communication

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

Submission 2280

but communication only works if others can understand you. Because of this, my sister has used her own time and funding along with suppo1i through NDIS funding to train others in’s community including family members friends teachers teacher aides carers etc. ~ • to understand use some ~communication systems This has been an enormous effort but it fundamental being able access human rights friendship partii of communitiy Social connection essential wellbeing both and her famili If- unable sufficient suppo1i through NDIS opportunities participate social interactions will diminished so will my sisiter’s - accesses supports school but NDIs fills critical gaps no other system designed funded cover particularly around personal care, communication equipment ,and community participation outside school hours. NDIS funding provided respite for-her family Even though she communicates different modes _is teenager does not want spend all mother present every event would be awkward for- social peers NDIS allows hang out without having mother there also allows much needed time enjoy connections with own friends Like any teenage deserves dignity independence age-appropriate experiences. as outward appearance social media feeds might paint picture stoic resilience parent child disability is mentally emotionally challenging My sister fight daughter access things parents teenagers simply expect which exhausting hold reactions when well-meaning naivie friends family make comments show they don’t really understand constantly advocating recognition everyday rights frustrating seeing friends children similar ages reaching milestones minimal effort these that might never reach disappointing grieving happens each time `that’llllll’peers milestone unlikely to reach like walking talking playing sports riding bike have first boyfriend going dates feels unfair has work hard achieve naturally friends natural anger resentment frustration despair every day challenging even feeling emotions comes real sense guilt emotional toll negative feelings outlet share guilty normal human reactions takes mental toll on parents of disabilities and sister exception. What often invisible enormous unpaid labour additional financial burdens families appointments advocacy coordination emotional load training transport communication support behaviour support constant problem-solving required just accessible ordinary Any suggestion NDIs could reduced reflects misunderstanding cost supporting person experience expected everyone else Mandatory plan renewal processes add already significant burden creating anxiety uncertainty regular intervals people whose disability lifelong evolving needs are not going away Over past years the National Disability Insurance Scheme (NDIS) been a significant support allowing niece my sister her husband son be

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

Submission 2280

community and NDIS funding is critical in ensuring that she can continue to be part of this community. It is not a luxury or an unnecessary expense. It is a vital lifeline for people with disabilities and those who care for them. A policy that requires participants to exhaust all available treatments before being considered eligible is unfair and inequitable. Expecting people to access treatments that may be unaffordable or inaccessible before they can be considered eligible is grossly unjust and unworkable. Flexibility in how funds are managed and spent is important since every person with a disability is a unique individual with unique challenges and in a unique situation.Families like redacted'swho rely on this funding are already facing incredible pressures Support needs to allow for flexibility for people to access without putting additional obstaclesin place that delay families the support that they need and deserve. I urge the committee toreject any provisions that would reduce flexibility, restrict eligibility,or cut supportsforpeoplewith significantand permanentdisability.`Iwould askthe committeeto considerthefollowing:

• RetainflexibilityinhownDSISfundingcanbeused,recognisingthateverypersonwitahdisabilitihaseuniqueandevolvingneeds- Ensurethedefineditionofpermanenceexplicitlyaccountsforallifongeneticconditionswhereneedschangecrossalifetime,ratherthanrequiringparticipants toehaustreatments thate mayb eunavailableoranaffordab le Protectcapacitybuildingsupports,perticularlycommunicationtrainingwhich enablesparticipationincommunityandreduceslong-termcoststototherservice systems Ensuresplanrenewalsprocessesdonotcreateadditionaladministrativeburden fora lreadycarryingsignificant unpaidcaringresponsibilities