Submission TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submitted by Parent and Guardian of an NDIS Participant Date May 2026
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
intervention principles in the same Act. At age 11, approaching secondary school school and puberty , t his c hild faces rapid \and predictable changes\in support needs t hat th e new framework cannot respondto it n time .
- Automatic plan renewal : A primary s chool p lan auto-renew ed intoa second ary sc ho ol context w ill be structurally misaligned from day one,w ith no mechanismt o correctit without clearingthe new reassessment threshold.
- Ministerial budget reductions: T he announced5% reduction i n community participation funding directly threatensthischild’s hearing a nd communication suppor group.The powertomake thesereductions is unchecked,does not expire,andcannotbe disallowedby Parliament.TheBillexplicitlypermits reduc tionsevenwhereaparticipant’s reasonable an d necessary supports areno longer fully funded.
- Sweeping powerswithout published rules:TheBudget Method,Support Needs Assessment Tool,the definition of“direct ly,”automated decision-makingrules,pricing determination criteria,a nd futuresupportdeterminationpowers all existi nt heBil l withou tc orrespondingpublishedr ules.Parliamentisbeing asked to grantthese pow ers beforethedisabilitycommunitycanassesstheir impact. This submission urges the Committee torecom mend then Billnot pass untilthose rule sare publis hed and genuinely consulted upon.
Permanenceand “ treatable” impairments: s everalof this child ’s cooccurring conditions — including sensorineural hear ing loss ,an du rinary incontinenc e—risk being characterised as “ t reatable“ w ithout publi shed guidance distinguishing betweenconditions thatare manageda nd conditionst hat areresolved . Displacementto other service systems: Continence products, p sychology\audiology \anda vision supportsriskb eing redirectedt o mainstreamsystemsw i th funding capsandsession limitsthat a ren inadequatefor ac hildwiththis complexityo f need. The fullsubmissiontha tfollowssets outthe basisforeach these concernsin detail,w ith specific reference tot ehBill’sprovisions an d theirapplicationtot hischild’scircumstances.W il sthis submiss ionconsiders theeffect of teh B ill’s provisions on thi sc hil df,tehe applicationot te p rovis ions will negativelyimpact many vulnerable participants,p articularly those with complexor rareconditio ns.
National Disability Insurance Scheme Amendment Bill
Introduction
I am a parent/guardian for an eleven-year-old who is part of current NDIS participants. Their confirmed diagnosis includes rare genetic conditions that have no cure, affecting multiple body systems simultaneously resulting complex interdependent functional limitations. The submission concerns provisions within [the bill] which will significantly reduce my child’s funded support services; eliminate essential human reviews; vest enormous discretionary power into Minister/NDIA through rules/determinations yet unwritten or consulted upon. Sustainability requires measures stopping fraud while ensuring long-term existence for children like mine. However, sustainability cannot be achieved without addressing structural problems regarding planning/compliance governance at NDIA level.
About Participant
The participant (my son) has been diagnosed with a rare genetic mutation causing: tall stature associated musculoskeletal implications developmental coordination disorder (DCD), low muscle tone (hypotonia) speech and language delay mild intellectual disability sensorineural hearing loss requiring aid attention deficit hyperactivity disorder urinary incontinence recurrent UTIs intermittent strabismus under active ophthalmology review We were unaware until age 7 when the condition was identified. Hearing loss development delays progressively from two years old but underlying cause unknown globally only about seventy to one hundred people are affected by this condition. My child currently accesses these following supports via their NDIS funding: physiotherapy occupational therapy speech therapy psychology
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
- Hearing and communication support group
- Continence products This genetic syndrome is a rare multi-system condition, and not well understood by many practitioners. My child’s supports are not excessive; they are the minimum required to enable a child with this combination of impairments to develop learn communicate, and participate in daily life.
טשconcern One: THe New Functional Capacity Assessment
Schedule (\text{Part}1) oftheBillintroducesanewdefinitionoffunctionalcapacity.For first time ,this will be assessed without reference assistive technology home modifications support from other people or person s environment personal circumstances .In principle assessing true underlying disability rather than supported version it could produc more accurate picture need However,Bill creates direct irreconcilable contradiction.The functional capacity assessment will conducted as if mychild has no family no hearing aid glasses current supports But Schedule Part requires planning decision account contribution informal carersfamily Theassessment treatsmyasifwedo not exist funding decision treatscild do everything As parent complex needs provide substantial daily support continence management hear ingaid maintenance medication coordination seven separate therapy streams This invisible labour Bill use justify reducing funded support while simultaneously claiming does take intoaccount I ask Committee ensure where childrens functional capacity reveals genuine need fund plan reflects that care burden shifted parents ## Concern Two :The Word “Directly” and Cascading Disability Schedule 3 changes test for funds arising impairment directlyfrom animpairment Government provided definition guidance published rules explaining what means in practice Provision of great concern to me child’sdisabilitydoesnot produce its effects straight line EZH2 mutation produces through cascading chains cause consequence:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
- Physical chain: Hypotonia and DCD create difficulties with self-care, dressing, writing, and physical participation at school
- Cognitive chain: Intellectual disability cognitive processing difficulties create learning difficulties which create frustration and anxiety which create the need\nfor psychology support
- Hearing chain: Sensorineural hearing loss creates communication barriers
which create social isolation which creates anxiety and self-esteem difficultiess requiring psychology support - Continence chain: Urinary incontinence creates anxiety about community participation and social settings, impacting the very community participatons now subject to \na proposed $50%$ budget reduction Under the new “directly” test each link removed from primary impairment becomes potential point denial. The psychological impacts living hearin loss , continence coordination dificulties intellectual disabilty age are real clinically documented but they not direct narrow causal sense The Committee should note published guidance exists on what directly means When this bill passes planners automated systems will be required make determination no rules guide them child rare syndrome many planners never encountered risk inconsistent incorrect decisions is high I ask committee require a published definition of directly before this bill pass clear examples multi step caus chains ensure secondary conditions caused by living primary disable including mental health anxiey socail isolatiom remain fundable Ensure rarity diagnosis does disadvantage participant application 3. Concern Three: Restrictions Plan Reassessments Schedule Part restricts unscheduled plan reassessment circumstances where can demonstrate significant ongoing change functional capacity substantially reduces ability perform daily activities response window increases days My child years old turn during life next plan mean entering period greatest transition their life date moving second school puberty increasing complexity entirely environment without structured therapeutic familiar setting that primary school has provided Bill own early intervention framework says act deterioration occurs reassemment framwork say prove substantial deterioraion action These two principles cannot coexist same piece legislation for child approaching adolescence with multiple complex impairments
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
Specific scenarios of concern for this child include:
- School transition: Moving to secondary school removes the scaffolding of a therapeutic primary school environment. Support needs will increase, but the disability itself has not changed. The Bill excludes environmental factors from assessment, so this change may not meet the threshold for reassessment.
- Puberty and continence: Hormonal changes frequently affect urinary continence. Documenting this as “significant and ongoing” sufficient to trigger re-assessment may require months of clinical evidence to accumulate during which the child is unsupported.
- Mental health emergence: Adolescence is known high-risk period anxiety depression in children intellectual disabilities communication difficulties Early intervention requires acting before deterioration – exact opposite provision Hearing aid upgrade Audiological needs change with child grows Equipment changes blocked inside locked plan . The response window compounds all above Family identifying emerging needs October may receive until January after full term passed without adequate support.I ask committee Exempt individuals approaching known periods including transitions new reassessments Restore day timeframe minimum urgent pathways deteriorating situations Align reassessment thresholds early principles Act Concern Four Automatic Plan Renewal Schedule replaces review automatic renewal When expires it rolls over identical copy Unspent funds one-off funded items carry over My current plan designed around their context therapies timed around school day literacy appropriate goals younger child Automatically renewing that into different school routine social environment pubescent body produce structurally misaligned reality Any assessments assistive technology reviews functional capacity reports disappear cannot replaced clearing new reassessment threshold effectively removes family’s ability proactively I ask Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
- Require human review before automatic renewal for children approaching known developmental or educational transitions • Ensure one-off funded items do not disappear without opportunity to address them. • Ensure participant can agree to auto-renewal or request reassessment due anticipated changes when plan expires.
National Disability Insurance Scheme Amendment
Submission dated Submission 2003
- Exempt therapeutic group programs with documented clinical outcomes from community participation budget reductions.
- Require individual assessment before applying percentage reduction in participant’s plan.
Concern Six: Sweeping Powers Without Published Rules This concern emphasizes significantly:
The bill creates or extends substantial ministerial powers but lacks corresponding published guidelines to govern their exercise; thus impacting real-world impact unknowably due to operational detail absence.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
For a child with a rare syndrome, the absence of rules is especially dangerous. Potentially, decisions made about common disability profiles are more likely to be accurate under a generic framework than decisions about rare, multi-system conditions. Without specific guidance, my child is at the mercy of whoever interprets the test — human or algorithmic — on a given day. I ask the Committee to:
- Recommend that the Bill not pass until the Budget Method, Support Needs Assessment Tool, and definition of “directly” are published and subject to genuine public consultation
- Require all Ministerial determinations under Schedule 1, Part 4 to be subject to parliamentary disallowance
- Require a human review right for any automated decision that results in reduced funding
- Mandate that automated decision-making systems be validated against rare and complex disability profiles before deployment
- Require the Minister to publish criteria for pricing and support determinations before exercising those powers
Concern Seven: Tightened Permanence and “Treatable” Impairments
Schedule 1, Part 8 tightens the definition of permanence to exclude conditions that“can be treated.” A rare genetic condition is permanent and should satisfy this test.However, several of my child’s co-occurring conditions may be vulnerable to anarrow application of this test: - ADHD: Medication exists. If a planner or algorithm treats medication as resolvingthe impairment, supports connected to attention, executive function,and behaviour regulation could be at risk. - Sensorineural hearing loss: Hearing aids manage but do not cure therecondition. The distinction between managed and treated must be clearlydrawn in legislation or guidance. - Urinary incontinence: The recurrent UTI component may be characterised astemporadic and treatable.The underlying continence impairment isthe structuraland neurologicalbut requires strong clinical documentationtosurvive thistest.Appropriate treatmentisnotclearly definedandeasily confusedwith thenealthytherapies which provide reasonableandsupporttothereimpairment.Theapprovisions themselvesdo nothit clearif “treatment” are purely medicalor go further.In almost all cases,a participant will have existing reports frommedical andaide health professionals who havethe strongest understandingof theseparticipantand whether any “treatement” can curesere impairement.I ask the Committee to:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
- Publish clear guidance distinguishing between conditions that are “treatable” in the sense of being resolved, and conditions that are managed or controlled but not cured.
- Ensure that ADHD, sensorineural hearing loss, and continence impairments, and many other impairments, are not excluded on the basis that medication, hearing aids, or management protocols exist.
Concern Eight: Displacement to Other Service Systems
Schedule 1, Part 9 formalises the principle that where another government system could provide a service, the NDIA may decline to fund it. For my child, this creates specific risks across several supports:
- Continence products: The Continence Aids Payment Scheme (CAPS) exists through the health system. CAPS funding caps are significantly lower than what my child requires. Displacement to CAPS would result in an unmet funding gap.
- Psychology support: Medicare-funded mental health plans are capped at 10 sessions per year. For a child with intellectual disability, ADHD, and anxiety arising from physical, communication and sensory difficulties, 10 sessions per year is clinically inadequate.
- Audiology: Hearing services sit across multiple systems. Pressure to shift costs to other systems may leave gaps at the boundaries. The Government has acknowledged that mainstream services have collapsed and that families have had nowhere else to turn. Directing participants to those services while they remain inadequately resourced does not reduce the need for support — it simply removes the funding and leaves the need unmet. Rebuilding those services will merely spread the costs not eliminate them.I ask the Committee to:- Ensure that displacement to another system requires demonstrated adequacy of that system for the participant’s specific needs.- Require that any reduction in NDIS funding based on other system availability be accompanied by a funded referral pathway
Summary of RecommendationsI respectfully ask the Committee to recommend the following amendments and conditions:\On the Bill’s internal contradictions:
- Reconcile the exclusion of informal supports from functional capacity assessment with their inclusion in the funding decision* Align the reassessment threshold with the early intervention principles in the same Act“
National Disability Insurance Scheme Amendment Submission
On Rules Not Yet Written:
- Do not pass the bill until budget method, Support Needs Assessment Tool, operational definition “directly”, criteria published.
- Require all determination instruments subject to parliamentary disallowance;
- Publish Ministerial pricing/funding decision criteria beforehand,
Participant Protections:
Exempt those approaching developmental transitions from automatic plan renewal without review; restore reassessment timeframe or provide urgent pathways in deteriorating situations before applying percentage reductions on budgets require human review rights automated funding decisions validate systems against rare/complex disability profiles publish clear guidance distinguish treatable conditions resolved ones.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2003
Committee:
Senate Standing Committee on Community Affairs