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

Submission 1818

To whomever is reading this, My name is redactedandIamthe mothercareradvocateofachildonthenDis. In2023mysonsofwasbornwithararegeneticconditioncalledAngelmanSyndrome.Tosaythishasbeenchallengingwouldbeanunderstatement.Inabackhandedwaywewereluckytogethimadiagnosissoyoung,beforehewashyearold.TohelpyouunderstandtheextentofsdisabilityIlwillincludeanelplanationofthedisorder.Angelmann SyndromeorASiscausedbychangestotheUBE3Ageneonthematernalchromosome.The disorderismostcommonlycausedbypartialdeletionormutationofit.WhenItellpeoplehowachildpresentswi th ASasa rare condition,Iexplainthatitispresentalotlikecerebral palsy,orsevereautism,butinaverysociable andhappy child.Thereisoncoursemoretothan that.AScausefunctionallysevereglobaldevelopmentaldelaysspeechimpairment causinglittletosnospeec h,movementbalance disorders such as ataxia,and seizures. ASCause GORD,gastrointestinal disord ers,frequentdrooling,a protruding tongue,chewing/mouthingbehaviours,suckswallowd isorders,fascination withwaterandsleep disturbance The behavioural characteristics of result in a person frequent smiling laughter,happy demeanour,easilyexcitable personality shortattentionspan has the additional challenges talipes ( or clubfoot)central hypothyroid.Hecurrently onthree medications.Thes control his seizures reflux thyroidcondition.Hefalsohavetof requentlytakevitamin supplementsdespite ourbesteffortstoeedagooddiet ’ sdiagnosiscameaftermonthsstruggling togethimtogainweightas aninfantwith him nearlyinthepercentileanda nasty case RSV Respiratory syncytial virusatfour months agehas presentedchallenges we never expectednever experiencedfromourd ughter AndwhilemypartnerIareverylucky some respects heisdisabilitysupportworker I have worked medicalfields stillfindit very difficult knowledge experiencehave canonlyimaginehow much harder this road parents carersunfamiliar society hardestpartsofdiagnosishavebeengrievingprocess Havelo gothopeswisheshadforhim andhisfuturemine Atthesametime grieve little boy man thathe will nevertobe conflicted guilt dare feel grief loss when child alive loved happy relative considering disability healthy There also guil knowing son outlive me partner caring become sister responsibility something she signed up for Often remarked wonderful children howhappy is sweet girl daughter Howgood mum both lucky part of family comments made genuinely kindness people don’t see substantial effort behind scenes Despite difficulties face no real option continually step show do it smile on myface

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

Submission 1818

The NDIS for our family has been life-changing. We could never have afforded early interventions and supportive equipment he’s able to access. Interventions working towards him being able to walk or communicate like many take granted aren’t luxuries; participation here isn’t.

I believe people represent original intent behind this program designed lifelong support permanent profound complex disabilities aims keep them safe healthy include meaningful way while must sustainable cannot come cost these members society’s safety dignity basic human rights need better protections written into bill People full time high intensity support if we implement blanket funding cuts ratio changes open door vulnerable abuse neglect isolated confined institutions higher demands on overwhelmed hospital system also risk injuries participants as well Changes reduce levels of support can safely applied intellectual cognitive communication disabilities there needs safeguarding therapies services disabled people need access Blanket caps allied health speech therapy physiotherapy occupational therapy behavioural support significantly impact long-term goals children undermining ability function increase risks reducing independence Even now young absolutely use more funding therapies not less The changes around parental responsibility concerns me Being parent typical child challenging would disagree raising a child with profoundly disability vastly exceeds most consider typical parenting requires constant supervision rarely sleeps through night He significant medical physical management supports Much partners I sleep self-care education employment opportunities social lives led own stress relationship struggles, mental issues loss income isolation community spoken at length about son my family challenges always facing included myself submission because know who will affect paths are how much NDIS means it helps see important protection for our vulnerable profoundly disabled people robust that should burden government taxpayers amazing achievement true measure any society found treating its most vulnerable If proposed to the NDIS do fear they capable doing truly scared future life already so hard dread change make difficult really hope you listen understand valued others disabilities families carers advocacy groups submitting statements.