Submission: NDIS Future Generations Bill 2026
Tuesday 26 May 2026 To the Community Affairs Legislation Committee,
I am writing as the mother and full-time carer of my daughter (Miss 11), who is an NDIS participant.
(Miss 11) has Level 2 support needs due to autism along with ADHD, dysgraphia, dyspraxia, sensory challenges, encopresis, significant difficulties with interoception regulation which are common co-morbidities associated with Autism.“hidden disabilities”, but they have enormous impact on our daily functioning.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1515
concerns being raised, including my own complaints about the misuse and suggestions for tighter safeguards such as staged or managed funding release, the participant was reportedly granted a further $250{comma}000 allocation without meaningful protections being implemented. Experiences like this make it extremely difficult to accept proposals that reduce supports and flexibility for families like mine {where budgets are modest}, where every hour of therapy is carefully stretched in order improve child’s long-term functioning independence wellbeing The answer fraud misused not life harder autistic children rural carers participants with legitimate complex needs better oversight high-risk cases while preserving flexible individualised support genuinely benefiting them My concern reforms move away from individualised support professional clinical judgement closer rigid systems do reflect reality people complexity fluctuating disabilities Miss encopresis occur unpredictably sensory challenges dramatically affect regulation energy communication participation moment next Something simple meal takes second day
National Disability Insurance Scheme Amendment
Submission: Securing NDIS Future Generations Bill - 2026
- Miss 11 often non-verbal; relies heavily audiobooks/videos/screen-based supports.
I home educate miss_educate, allowing tailored around disabilities/sensory needs/regulation challenges/fluctuating capacity flexible approach essential supporting engagement/wellbeing/long-term development standard educational environments likely struggle accommodate safely and consistently. However sustainability home education circumstances depends on appropriate therapeutic supports professional guidance flexibility within NDIS prevention carer burnout families adequately supported create stable lower-crisis improve long-term outcomes disabled person broader community public systems early effectively reduce future pressure health mental health education crisis support while increasing likelihood meaningful participation contribution time. one effective interventions miss_hydrotherapy improved overall functioning more any other tried believe partly due core strength gave greater sense stability body flow-on effects focus emotional regulation mood participation ability engage written tasks importantly hydrotherapy only supports miss_consistently engaged willingly it is also one difficulty securing funds ndis.
National Disability Insurance Scheme Amendment
Submission: Submission-1515
Unfortunately, we lost access to this therapy when the provider relocated interstate. Since then, I personally self-funded weekly active pool play sessions an hour away to another neurodivergent child because I know how important it’s intervention is for Miss(11)’s wellbeing functioning. This example shows why flexibility within NDIS in rural areas where services limited continuity care fragile. We live approximately Launceston regional Tasmania travel extremely tiring overwhelming both(Miss)(11) due our neurodiversity means many standard service models simply don’t work us Over years lost multiple excellent professional due maternity leave very few replacement services locally led extended gaps provision As result rely telehealth online supports using my own paid Zoom account Occupational therapists speech therapists not supported directly but also helped guide myself and(Miss)’therapeutic assistants better support day daily The advice education OT Speech professionals critical understanding strengths limitations needs input has me adopt strength-based mindset rather constantly trying force (Miss ) into approaches unrealistic distressing her There no one size fits all approach working these hidden disabilities.
National Disability Insurance Scheme Amendment
Submission: Submission-1515 These supports have also been essential for my own wellbeing as a carer. Without professional guidance, many parents are left carrying enormous stress while trying to navigate complex disabilities with little practical understanding from systems around them.I am also deeply concerned about the inconsistency and lack of expertise among someNDIS assessors.At Miss( \text{eleven} )’ s last review ,her functiona l assessments suggested higher level need.Rather then designing suppor ts based those assessments recommendations qualified professionals I was instead require d obtain new aut ism assessment .This assessment confirmed high er leve r diagnosis which was surprising given Miss eleven increasing age widening gap between her functional abilities same-age peers At another re view t he ass essor disclosed they had brother autism appeared approach our assessment significant personal bias They positioned themselves expert despite not listening properly me or miss eleven ’s professional team.They encouraged support arrangements would created greater burden st ress both (Miss ele ven) myself rather than reducing disability-related barriers.In experience outcomes depend heavily individual assessor assigned family.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1515
Concern about Assessors’ Qualifications vs Allied Health Professionals
I am concerned that many assessors do not appear to have qualifications comparable to occupational therapists or other allied health professionals, yet they often override or disregard the recommendations of clinicians who know the participant well.
This is one reason I am extremely concerned about increased automation and standardised decision-making under this Bill.
Experience with Miss 11’s Needs
I recently experienced how poorly systems can understand [Miss 11]’s actual needs when trying to access a larger iPad for her.[[MISS_11]] experiences dysgraphia, visual-motor difficulties, discomfort with handwriting and typing,[[[MISS_11]],] uses technology heavily for communication, communication learning regulation,, and is often non-verbal due to overwhelm.Larger screen space makes significant difference to her ability function independently engage successfully. Yet these needs are often poorly understood by systems focused on rigid categories rather than real-world functioning. The financial impact repeatedly self-funding necessary supports places ongoing strain already vulnerable families. At same time personally witnessed extraordinary waste misuse [[NDIS]] funding in situations including adult receiving hundreds thousands dollars unmanaged funds despite obvious misuse exploitation workers.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1515
It is deeply distressing to see genuine families struggling to access low-cost practical supports that genuinely improve independence and wellbeing while enormous amounts of funding are wasted elsewhere.
For example, we were once told that the NDIS would not fund a basic Alexa device because \nit was considered a “household item”. However, for Miss(Miss~{number}~~), Alexa significantly improved dependence and privacy by guiding her through toileting and clean-up routines related to encopresis in way she tolerated far better than direct prompting form me.`
For higher income families an Alexa may simply be household convenience For families living on carer payments small practical supports like this can make enormous difference but still financially out reach. This why flexibility partnership with families matter
I am also concerned about reforms which may harder use trusted friends or known community members as support workers Children disabilities often safest most regulated people they already know trust Many rural communities do have large workforce formal disability worker available. In past I used local older friends respite supports increased administrative burdens compliance requirements discourage many suitable from participating Families should forced into institutional unfamiliar settings systems value relational safety realities.
National Disability Insurance Scheme Amendment
Submission: Securing NDIS Future Generations Bill 2026 Submission 1515 Finally, I want Parliament to understand risk carer burnout. The have been periods where I gone over months without a single night away from Miss). Have offered Carer retreat wellbeing programs but unable access suitable respite attend them.Families like ours already stretched capacity financially.I also believe important understanding well-supported disabled people care are able significantly into their communities when appropriate supports place.Despite challenges (Miss) face neurodiverse rural household extensively local contributing volunteer work.However ability depend stability flexibility around needs.When effective individualised sustainable they not just benefit isolated person create ripple effects throughout families community.In our case make it possible continue through volunteering aging that would otherwise become unsustainable under pressure unmanaged disability-related demands carer burnout turn meeting need contribute my own emotional mental health.Its makes economic social sense government supporting disabled people carers to function as well early intervention therapy practical supports
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1515
funding arrangements help families remain connected to their communities, reduce crisis situations, reduce long-term burnout, and increase the capacity of participants and carers to contribute meaningfully to society. By contrast, reducing supports may appear to save money in the short term, but often creates greater long-term costs through worsening mental health, carer exhaustion, social isolation, increased crisis presentations and loss of community participation. The NDIS should not only be viewed through the lens of immediate budget reduction.Itshouldalsobeunderstoodasaninvestmentinthe long-termmfunctioning,stabilityparticipationofdisabledAustraliansandtheir familiestheir contribution of disabled Australians and their families.Reducing therapy supports,limiting flexibility,increasing automation or making supportshardertoaccesswillnotcreatebetter outcomes.It will simply shift more pressure onto disabled people and their families while reducinglengthen-term wellbeingparticipatiion independence.May I also besoboldassuggestthat there maysmore effective ways improve accountability within then DISwhile simultaneouslyreducing both misuseadministrativecosts.In my experience,enormous amounts time,moneyemotional energy are currently being spent on repeated reassessments,duplicated paperwork inconsistent decision-making adversarial processes thatoften failmeaningfulyimprove participant outcomes.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1515
A more efficient system could involve standard funding categories being allocated based on detailed functional assessments completed by appropriately qualified allied health professionals, with budgets linked clearly to demonstrated functional needs.
Rather than requiring families to repeatedly defend and re-prove their circumstances to multiple non-specialist staff,participantsand carers could develop straightforward plans outlining how funding will be used to achieve practical goals and improve long-term functioning.
Funding could also be released progressively throughout the year in higher-risk situations,
rather than as unrestricted lump sums
opportunities fmisuse without penalising genuine families.
At plan review time, families could provide simple outcome-based reporting explaining what supports were used, what worked,& what changes may be needed moving forward.<br/>
This approach </br><p>could significantly<br/>reduce the need for excessive layers of bureaucracy&, duplicated assessments, , repeated disputes,& >& costly administrative intervention, while still allowing targeted audits and safeguards where
genuine concerns exist.
Importantly, it would also shift of NDIS staff away from acting as judges over highly complex disabilities they
may
towards supporting families to build
and communicate workable
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1515
Where concerning spending patterns or misuse are identified, additional oversight and administrative resources could then be directed specifically toward those high-risk cases rather than increasing rigidity and compliance burdens across the entire Scheme.
I believe most families caring for disabled children are doing their best under very difficult circumstances. Treating participants and carers as intelligent and collaborative partners not only preserves dignity but is likely to produce better long-term outcomes stronger accountability, and a more financially sustainable NDIS overall.
I urge Parliament:
- protect capacity building and participation supports
- ensure decisions remain individualised and clinically informed
- prevent over-reliance on automation an standardised assessments