Submission 1794

Submission 1794

About Me

I live in Melbourne and am the full-time carer for my 19-year-old daughter who has FOXP1 Syndrome. My concerns are related specifically about the increased power given to Ministers over NDIS budgets without adequate appeals mechanisms.

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

Submission: 1794

Recommendation:

• Limit the amount of power the proposed legislation gives to the NDIS Minister to ensure their position is not abused at the detriment of people with disability.
• Provide a means by which plan supports and budgets can be appealed.
• Specify a time frame of 28 days that participants can respond to requests for information and do not cap the number of attempts the agency needs to make to contact a participant. The agency should be required to use more than one method of communication when trying to contact a participant for information.

Cuts To Social and Community Participation Funding and Social Economic and Community Participation Funding from October 2026.

The proposed 50% cuts to Core funding – Assistance with Social, Economic and Community Participation and 10% cuts to Capacity Building funding - Increased Social and Community Participation are concerning. This not only creates uncertainty but has the potential to isolate my daughter more than she already is. She cannot participate in her community without the help of a support worker, and she cannot be left alone due to her own safety and the safety of others. Without access to her community, she will become more isolated than she already is. My daughter does not have the capacity to stay home all day and insists on leaving the house each day to regulate her emotions; if unable this happens head bangs develop tic or leave building run down street across roads look. She also no awareness stranger danger fear safe if receive 1:1 funding so safely access community If cut hours it add additional stress strains families who stretched supporting their loved ones disability especially care someone extremely challenging behaviours duty falls them Due work commitments do take daughter into community therapy appointments So accompany local swimming pool learn swim stay safe They op-shop volunteer Support workers speech therapy appointments communicate occupational practice life skills away environment Behaviour management sessions remain safe can learn

Recommendation:

do reduce daily living social participation capacity building supports as isolates participants.

Functional Capacity Assessments Eligibility Reassessments for Existing Participants It unclear how existing eligibility scheme reassessed plans renewed from The new framework proposes use I-CAN assessment tool assess participant’s functional capacity However tested rare disease community may fit purpose everyone with disability still extent training required utilise this tools nor know responsible delivering these assessments.

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

Submission:

It may be more appropriate to use a range of tools that are better suited to understand a participant’s functional capacity, including reports from experts such as clinicians and occupational therapists. The current proposed Functional Capacity Assessments –the I-CAN toolonly allows apersonto appeal theirfunctionalcapacityassessmentwiththeadministrative Review Tribunalandnottheirplan supportsorbudget.TheAdministrativereviewTribunalcanonlyrequesttheparticipant haveanotherI-Can Tool assessmentandoesnothavepoweroverturn budgetsorsupports.Thisdoes not giveapersoncapacitetoexplaincurrentcircumstancesandsneeds,nordoes itgivetheplannertrueunderstandingofparticipant’sneedscapabilitiesnor doesprovidingparticipantsopportunitytorequestreview orappealcurrentsupportsorbudgetsthealgorithmstheseICANToolsgenerate needtomadetransparenttoparticipants. Recommendation: • Do further consultation with community determine best place assess participants’ funcational capability what mostappropriate suite methodsuse. • Utilise externalreportspeople complex disability rare genetic conditions.## The Tougher Unscheduled Reassessmen Rules Restrictions Loss Rev RightsThe ProposedBill has very firm criteria regarding who can request unsched plan reassessment time frame 90 days NDIA respond too long for partici wait Peoplerare disease deteriorate substantially timeframe There is a need flexible funding urgent reassem people raredisease episodic sometimes progressive neurologicalconditions pathways unclear rarity ofdisease lack natural history studies on thegenetic condition know how likely progress regress overtime Clinical expertise occupational therapy reports assessments should sought conjunction Functional Capacity Assessments peoplewithdisability Rare Disease Recommendation: • Enable participant lodge reassessments have plans reviewed if theircondition and needs change significantly case where medical events takeplace clinical report prioritisingchange circumstance trigger urgentscheduleplanreassessment within7-21days depending urgency participanneedsResetting Budgets With Unspent Funds Rolled Over Next Plan It not always possible spend funds month period waiting quotes equipment orders filledUnspended fundsnecessary equateto unmetneed reflect inability find therapist meet child’s need Example FOXP Syndrome recommended type speechtherapy dysarthria speachtherapyspecialistfindspeech therapistscase daughter build connection with support workers easy tolerate difficult behaviour obsessive compulsivebehaviour struggle transition one task another takes building team bestsupport her needs The proposed resettingofSubmission by - National Disability Insurance Scheme Amendment (Securingthe NDIS Future Generations) Bill 20265/7

National Disability Insurance Scheme Amendment

Submission: [1794]

Budgets does not distinguish between one off funding you’ve used versus what’s still waiting.

Recommendation:

• Participants should justify underspent funds & request extended support into next plan.

Budgets and Funding Recommendations:

My daughter needs continuous care; mainstream participation is overwhelming due her communication barriers; she will need ongoing individualized assistance if budget decreases, risking isolation or safety issues with reduced support levels, as she struggles fitting within typical environments rather than neurodiverse ones like herself. The current framework lacks appeal mechanisms once new plans start—only Agency assessments can review budgets—which limits flexibility needed in supporting complex conditions effectively.

Multiple Impairments:

Possessing rare genetic disorders often leads people having multiple medical symptoms alongside psychosocial challenges such as neurological impairments that make it difficult to interact socially or environmentally. Some disabilities are episodic while others remain constant making them hard to categorize individually when entering schemes. A proposed change from ‘arising directory’ instead of just ‘arises’ could significantly impact those needing holistic supports across various types without segregation by disability type at any point during their NDIS journey.

Inclusive Communities

In the original planning of the NDIS there were three levels of the NDIS proposed, one of which was to rebuild mainstream organisations capacity to be more accommodating for people with disability. A lot more could have and still can be done. And whilst I welcome the government’s e0erts to support community organisations ef0orts by allocating $200 million to do so, the\nproposed funding will not be enough funding for many community organisations \t scale up tobe disabili ty inclusive.A token gesture i snot enou ghto truly su pport par tic ipants like mydaughter.

Recommendation:

• Provide guidance and more funding to encourage inclusive communities.

Conclusion

Whilst l wel come th elimination o f automatic entry lists ta he scheme,(something lhave advocated fo r overthe years because they disadvantaged peop lewith rare disease),there aremany areasofthepros edlegislation thatarecauseforconcern.TheNDISneeds tore main sustainable long termtol helppeoplelikemy daughter live their bestlife wit hthesuppor tsthat enable themtodost.Plan budgets should n otbe cuttothedetrim ento fparticipants needs ,goalsand aspirations .TheN DIS was neverdesigned tob eaone sizefits allmodel,sowhyisthel egisl ationtryingtos tre aml ine itmoreinstead ofallowingtheseschemeto focus onindividuals’ participants’needs.For peopleliving withdisability, the NDIS is nota luxury.Itisessentialtomaintaining safety,dignity,independence,andparticipationineveryday life.