National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1874
I am writing to you with urgent concerns regarding the proposed bill which aims to change the NDIS. It’s hard to capture how important our son’s NDIS supports are necessary to ensure safety, developmental progress; it’s challenging but I will endeavor succinctly referencing specific parts within this document: My seven-year-old has Angelman syndrome involving severe intellectual disability, epilepsy sleep disturbance lack speech ability unable complete personal care independently relies one-to-one assistance familiar adult trained in his care feeding communication manual handling health needs. If Minister Butler reduces social civic community participation budgets fifty percent, your son along two younger siblings won’t be able leave house unless both parents available One adult simply cannot safely supervise children mobilize communicate feed stay safe public place This would mean he can’t go pool or practice walking park essential gross motor skills Playing socializing is crucial development wellbeing; your child needs it as much peers if passed this bill family virtually trapped home outside school hours hidden from society socially isolated If NDIA pushes further responsibilities onto parents parental responsibility impact on my family significant far-reaching Already even support worker funding we provide extensive complex support day night Even when not physically present primary carer burden indirect care six ten hours weekly managing NDIS supports and plan reviews coordinating communicating therapists healthcare services educators ordering claiming continence,feeding therapy supplies maintaining repairing trialling assistive technology so more It already exhausting stressful manage household five teaching son therapies medical appointments care needs Gone lead primary teacher only doing minimal casual because of time taken up with this indirect care Support worker hour reduction I cease work altogether lose registration sisters also affected less engagement swimming lessons etc constant tyranny urgent struggling meet everyone’s basic for health safety Have sustained manual handling injuries resulting ongoing pain elbows requiring physio OT appointments past years Less support these injuries worsen capacity reduced Informal supports replace support workers son complex care training almost daily to maintain keep frequent changes in needs Reliant heavily informal supports caring sisters while taking son many appointments they don’t have the ability do more When calculating support worker funding, the NDIA must continue consider beyond normal expected support typically developing same age Must also consider time burden indirectly caused participant.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1874
If only supports with peer-reviewed research behind them are approved, people with rare diseases like Angelman syndrome would be left in real danger of missing out on essential and effective treatments and therapies. There is often little to no research available for our rare community, and we rely on research into other similar conditions such as cerebral palsy\northe professional experience of allied health workers.There must be allowanceforthiscontextorpeoplelikemysonwillbedisadvantagedandleftunsupportedpurelyduetohavingarareddisease.Whereaparticipanthasa raredconditionandresearchisanotyetavailable,theNDIAMustacceptevidence thatsupportsthistreatmentforcacomparableconditior situation,andtheppliedprofessionalexperienceandsightoftheadlihealthworkeradvising it.The risk off not providing appropriate treatmentorsupporisthatatheparticipant hasaworseoutcomerequiringgreater supportanda ndfinancialcosttothen DIS or healthsystemlateron.