National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2016

My name is redacted and I am an NDIS participant with a very rare progressive eurodegenerative disease that causes significant physical disability, severe vision and hearing impairment, serious balance and proprioceptive impairment, and functional limitations across many aspects of daily life. The NDIS has allowed me to live quite an independent and meaningful life despite substantial disability. It has funded supports that help me maintain my physical functioning, communicate effectively, participate in the community, and avoid much higher support needs in the future.Because of this, care deeply about the future of the NDIS.I want be clear that i support efforts make ndis financially sustainable.The scheme must remian viable generations disabled Australians,i support measures reduce waste overcharging fraud ineffective spending.However do no suppor bill current form.My concern appears focus heavily reducing expenditure increasing administrative control while reducin flexibility individualised decision making makes ndis effective My own circumstances demonstrate why matters cannot grip anything right hand have abou/5 grip strength left hand Cannot raise arms above shoulder height short windows time can things before ability collapses need long rest periods these muscles will function again.Cannot safely navigate roads car parks stairs escalators or environments independently due severity propioceptive impairme This propriocptive impa means zero capacity stand walk even sit still low-to-dark lighting environmen which occur surprising amount daytime scenarios.Rely heavey on lip reading communi with cochlear implant require Auslan interpreters for specialist appointments Without Cochlear implamnt I have meaning speech recognition Even it lip readin remains essential effectiv communication most situations.Despite significant disabilities relatively independent because receive righ supports.In particular weekly speciali neuro rehabilitative physiotherapy been critical maintaining mobility functio It is not recreational service optional extra Preventive support helps remain independe reduces my nee more intensive supports Only safe gym exercise equivalent.If access to supports such as physiotherap restricted through standard limits inflexible funding decisions needs will not remain stable They wi increase substantially.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2016

Without ongoing intervention, I am at risk of avoidable physical decline, increased dependence on mobility equipment, and greater reliance on support workers for everyday activities, including a significant increase in personal care funding. The long-term cost of these outcomes would far exceed the cost of maintaining effective preventative supports now. This is why I am concerned by discussions around standardised limits on therapies and supports. My independence is not evidence that I have low support needs. It is evidence thatmy current supports are working. If those supports are reduced, my disability does not become less severe. My support needsbecome greater. Any assessment of sustainability should consider not only the immediate costof supports, but also the cost of removing supports that are currently preventing higher futur expenditure. I am also deeply concerned about proposed reductions to social and community participat ionsupports. Community participation is sometimes discussed as though it is an optional extra. For me,it isnot. Because of my severe proprioceptive impairment, I cannot safely navigate many publicenvironments independently.Icannot safelycross roads or car parks aloneandmany every daycommunityactivities require suppor ts t o be completed safe ly .These supp ort s allow m eto attend appointments , meet friendsa nd family,a ccessthe comm unity sa fely,goshopping,r un errands,andparticipateineverydaylifedespite mydisability.My part icipationisalso affectedby significant communication barriers.Even with acochlearimplant,I rely heavilyon lip reading anda oftenrequirecommunicationsupports suchas Auslan interpreters toe access servicesanda ppointmentseffectively.Reducing thesesupporthswouldno increase my independence.It would reducemy abilitytopartici p ate ine very d ay life,increase isolation ，an placegreater pressure onfamilyandi nformalsupp ports.For example,somethingasa simpleastomeetingafriendforcoffee woul no longerbe possiblebecauseiwou ldn’t have the support requiredtogo tot hecafe,crossthecarpark，enterthebuildingando rder,pay andsitdowns afely.Allthesellittle stepsare alsoapplicable to attendingappointments an drunningerrands.W ithout thatsupport,m anyofthese activitieswouldeithernotoccurorw ould requir eme tonrelyone fami liy membersaccompany me which isr arelya possibil it y.I don’t wanttolosefriendship s because Ican’ t bepresent duetosocialandcommunity participation fundingcuts.Theprospect ofbecomingincreasingliisolateda nd disconnectedfrommy communityissometh ingthatgenuinelyworriesme.Like physiotherapy,comm unityparticipation supports a re preventative.They help m e maintaintheindependenceI currentlyhave anda void greater suppor ts needs in then uture.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2016

I believe many people reading my circumstances would assume I would obviously continue to qualify for necessary supports. However, that assumption depends on participants retaining the ability to meaningfully challenge decisions, provide individual evidence, and have their real-world circumstances properly considered. My concern is not simply that supports may be reduced. It is that the proposed reforms appear to significantly reduce participants’ ability to dispute inappropriate funding decisions or demonstrate why standardised limits do not reflect their actual needs.I am particularly concerned about provisions that may allow the NDIS up to 90 days to respond to reassessment requests and other concerns. While this may seem reasonable from an administrative perspective, it does not reflect the reality of living with disability.My disability does not pause while administrative processes occur. If a necessary support is reduced, delayed, or removed, I still need that support every day while waiting for a decision.For someone in my situation, a funding gap can mean deterioration in physical function, loss of independence, reduced access to healthcare and community participation, and increased reliance on informal supports.If my supports are reduced and I am required to wait months for a review or reassessment outcome, the practical alternative is not independence. It is asking family members to absorb responsibilities that the NDIS has already assessed as disability-related needs. I do not believe this is a meaningful safeguard for participants with significant disabilities.Disability is complex and highly individual. Functional capacity cannot always be accurately captured through standardised processes, benchmarks, or assumptions. I need meaningful opportunities to explain my circumstances and challenge any decisions that do not reflect reality. Finally, I am concerned about increasing rigidity around funding periods and unspent funds.As a participant, I often need to budget funding carefully across an entire plan period.Temporary underspending does not mean I no longer need support. It often means I am trying to ensure funding remains available when I need it later.The proposed changes risk penalising responsible budgeting and may force participants to reduce or delay supports for administrative reasons rather than because their needs have changed.I also self-manage my NDIS funding. This is a choice I value greatly, but it is also one that reduces costs to the scheme.By self-managing, I avoid the need for funded plan management and directly employ my own support workers. This allows me to obtain high-quality support at a lower overall cost.

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

My Experience with the NDIS scheme than many traditional service models.

It gives me flexibility while also allowing me to achieve better value from the funding allocated, since I carefully budget funds seek cost-effective solutions make choices stretch resources without compromising outcomes.