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

Submission 2253

To the Committee, My 21 year old son has Angelman Syndrome, a permanent, significant, and complex disability requiring lifelong individualised disability support. He represents the original intent of the NDIS.Sustainability must not come at the expense of safety,dignity,or human rights.Isupportthe callfora protected cohortof participantsrequiring 24/7 high-intensity support.Blanketfunding cutsorratio changecannot safely applyto peoplewithsevere intellectualandcommunicationdisabilities.This protectionis essentialtopervent injuryabusecrisisortransinstitutionalisation.Caring fora childwit hAngelman syndromefar exceeds ordinary parenting — constant supervisionovernight caremedical managem ent,and communicationsupport.Theseresponsibilitiesmust berecognised as disabilit y-relatedcarenottypical parental duties.The proposedprovisionsrisk makingthextraordinary worko fcarers invisible could denyessential supports.SCCPandsIL fundingenable adults with Angelmansyndrome to live safelymeaningfully.Cuts tot essupports transferburden backage ing parentsthreatening their healthindependence.Myson loves travelling outside home.He requires 1:1 suppor t mobilise his wheelchairenjoy some lunchprovide personal hygiene car ecommunicate connect,tendbehaviours concern.Reduced ratiosorfunding directly compromisehis sa fe participation in outings.My son was even rejected from separate day programs because his needs were toohightoo much hardwork.Imagine isolation if hecould only access funding for a lowsupp ort staff ratio?He would not be accepted participate small groupoutings.Hecraves connection and engagement within the communitythe isolationwould bedetriment al. SIL arrangements depend on specific staffingratios forsafety.Block-fundedor standardised models remove choiceand accountability.Wherestaff rat iowere reducedpast duringaday stay,mysoneedtobe left alone while another client requiredintense support,in that time,had severe fall down flight stairs.Anothertimehephysicallyabusedwith multiple bite marks over bodyfromanother unsupervisedclient. He will steal food around himengage sensory-seeking behaviours involving accessing continence aide.he has sleeping disorder.herequires supervision all through night keep safe.Speech therapyoccupationaltherapy physiotherap y,and behavioursupport are of utmost importance maintaining function safety.Cuts to these services undermine communicationincrease behavioural risksreduce independence.People with Angelman syndrome have severecommunication disabilities require extra safeguards before anyfunding or policy changes.Communicationsupportis centralto safet y,behaviour management,dignity.

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

Submission 2253 I support calls for independent review rights for all plan changes. It is essential that there is allowance for parliamentary oversight and co-design with disability communities before new rules take effect. Intense support of a person with such complex needs as those with Angelman Syndrome enables safety, participation, and family well-being. There will be real-world,dire consequences w ith t he p rop os ed c ut s—loss o f e mployment , se vere exhaustion,family b reakdow n,i solation,a nd r i sko fh arm.