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

Submission 1949

Submission to NDIS enquiry, Future Generations Bill 2026

Background

My eldest daughter, age 10, has recently been diagnosed with Autism, Level 2. We sought a diagnosis based on her challenging behaviours at home, including a very restricted diet, increasingly violent episodes and high anxiety. I understand this diagnosis to place her within the “low to moderate Autism” category described in current commentary around the NDIS, with the high number of people in this category contributing to the challenges of the current NDIS scheme. I understand that people with this diagnosis are likely to be removed from the NDIS under the coming changes. While Thriving Kids is being established to provide support options for children under 9, it is unclear what support will be available for children like my daughter, who will be assessed on the basis of their ‘functional capacity’with the coming changes.

Functional Capacity

I am unsure what a functional capacity assessment of my daughter by an external assessor will mean for us.My daughter does well at school. Her Year 3 NAPLAN results show her to be in the highest bands across all areasofassessment.Sheishighlysociallymotivated,maintainsanumberofclosefriendshipsandenjoysattendingschool.Sheparticipatesinallareasoflearningandispoliteandrepectful.Athomehowever,mydaughter’s“lowtomoderate”Autismimpactseveryaspectoffourabilitytofunctionasa family.Itimpactsonourexperimentalandsafetywellbeing,andourabilityparticipatinthexperienceswewouldliketobeabletodoasafamilyincludingfamilymealspeacefultimeathome doingthings together,outings,holidays.Mydauhter’s Autismassessreportindicatesthat inorderforhertotunctionwellschool,she masks highly with theresulthathernervoussystemhasnothinglefttosupportherfunctionathom.Asaresult,wexperiencethefollowingchallenges:•Frequentviolentmeltdowns and extreme behaviour (daily)•Physicaldamageanddisruptiontolfurniturebelonging•Physicaijurytoyounersisterandyoursel•Severedietaryrestrictionsresultingironothernutrientdeficiencies

Impact on FamilyMyyoungest daughter aged 7 is high impacted by her sister challenging behaviours. She victim of frequent physicalattacks including choking pushing restraining hitting kicking.Sheisregularlyinterrupted prevented from carrying out the tasks or activities she engaged in.Her room belongings are frequently upended damaged threatened to be.Softenoffersupthingsthatarerightfully hers calm placate older sister.s often prevents going sleep woken asleep.These experiences have significant impact my youngest daughters own nervous system mental health.

She now easily triggered dysregulated herself as result.experiences stomach aches pediatrician diagnosed being caused anxiety.I worry about this willhave longtermhealthwellbeingability respondto challengesituationsfuture.We soughtmental healthcare plan provide our youngestsdaughter psychological support.Wefind ourselves unable fully relax always ready response next meltdown emotionaloutburst forward planning project managing how things need happen minimise risknext meltdown

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

Submission 1949

or outburst. We respond quickly to demands in order to placate and maintain peace.All our nervous systems are impacted – on edge at burnout meaning we don’t always have within ourselves to respond challenges fight flight responses activated due constant dysregulation absorb.My daughter’s dietary restrictions mealtimes challenging rarely able sit dinner table enjoy shared meal together variety options planned prepared which managing cohesively after full day work.It can take daughter wind down sleep end taking hours process getting ready food drink requirements story reading conversation can impact ability manage basic household tasks evening achieve sufficient myself.Support needs My Autism assessment indicates she has potential live healthy fulfilling life right supports.Hope with support now future understand condition knowledge management so fulfill her including independent career positive relationships friends family contribute community.Current support requirements include:

• Occupational therapy group therapy options Psychology Dietician Speech pathology assist diet supplement vitamin iron pills Sensory Supports.Financial impacts As my daughter recently diagnosed yet join NDIS financial of providing needed significant initial diagnosis cost $3700 no Medicare rebate.Psychology sessions per session only subsidised through year.Medicare.Initial assessments occupational therapy between $220 each recommended attend weekly occupational plus program will receive GP Chronic condition plan all.With addition psychology youngest daughter costs become unmanageable without additional support.Earn relatively high salary single parent paying rent childcare regular expenses additional therapy both children quickly add up inaccessible little room cut make sacrifices meet these in sustainable way unable maintain any savings.In conclusion Fear access required supports functional capacity long-term health wellbeing impacted.

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

Submission 1949

If my daughter is not supported to achieve her full potential now, I worry that she will require government support in other ways in the future – through welfare payments or increased medical/mental health care. Surely it is better for the investment to be in her potential to make a positive contribution and live independently as an adult, rather than to allow her needs to go unmet and for her functional capacity and ability to contribute to be limited as a result. Similarly, I worry about the immediate safety and long-term impact on my youngest daughter if we can’t provide my eldest daughter with the supports she needs. I worry about my own ability to sustain the demands of caring for both my children while meeting the demandsofmy work.Seeingajobwithreducedresponsibilityisnotfinanciallyviablebutourcurrentsituationseesmenearingphysicalandemotionalburnout.I askthatthegovernmentconsiderstheneedsoffamilieslikemywhentheyarereviewingthecapacityof thendistosupportpeoplewi thanAutismLeveldiagnosis. Isuggestthatperpetuatingtheadiagnosisis“lowtomoderate”impactmisleadingandonotaccountfortheimpacthis diagnosis hasoneveryaspectofoullives.Mydaughterissmartcleverobservantfunnycaring.Withtherightsuppor tshecanlearnounderstandher conditionandebsupportedtoleadah ealthyfulfillings lifeandlemakeacontributiontousociety.I hope that the Government will consider hereeedsandthinkaboutthereturnontheirinvestmentinhere future that cansbe supported through t he NDIS or replacement support scheme.