National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2248
CONFIDENTIAL
I do not wish for my name to be made public due to privacy reasons as a person with a disability to protect my wellbeing.
Submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am an NDIS participant, a person with disability who can no longer work, but I participate in the community where possible with support.I make this submission from a lived experience perspective andfrom apersonwho has been tryingto understand allthe changeswithNDIS sincethereforms beganin2024 alongwithemypreers.I ask thatmy personal detailsnotbe madepublic. TheBillmaybemitendedtointrovesustainabilityandintegrity,butsustainabilityis notachievedifpeoplearepushedoutoftheschemeunder-supportedorforcedtotwaituntiltheirconditionbecomesmoreseverebeforetheycanreceive help. MyexperienceasanNDISPaticipant,andexperiencemanyinthedisabilitycommunity,isthatthenDishas becomea source ofsystem fatigue. People are exhausted by constant change,repeated reassessment ,shifting evidence rules,the emotional strain oftahave tod provedisabilit yoverandovery again.For people already managing pain,fatigue,cognitive load(provider instabilityandeveryday functioning),tha tfatigucan becomeseveredistress.Furtherchange must not add to th atburden . support the idea o f sustainable ND IS.Ido n ot s upport reforms that makethe system more rigid, mor e standardised or less responsive toreallife.A sys temdesignedaroundcostcontrolfirst an d human need second will inev itably miss peopl es whose disability is no static, perticularlypeop le with permanent degenerative disabilities.
Request
Iaskthata you read my submissionwith respect and care as a person wit h adis ability thissubmission has taken measignificant amountoftimeand daysstoppingstarting.It ha sa causedme stress anda heightenedmysymptoms that affectfunctioning.Myeyes hurt its hardtoread mo reits difficultto see clearly.I amusingav irtual occlusion card.With help I was abletoc ompleteit.If Ihavenot referencedappropriatelyor referredtothingsasa professional would ihopeyou understandmy messageandy whyIo pposethisbill.Thisbasedoffm u understandinganda personal experienceasan NDISparticipant. Why thi ss Bill mattersforpeoplew ithdegenerative conditions ThisBill shouldnot betreatedasthoough alldisability isthe same.Progressiveande degenerativ econditionsaredifferentfromstaticimpairmentsbecause supportneeds can change over time,sy mptomscan worsen , functioningcandoinecline,andearlyinterventionmay redusetheneed for higher supports in future.Peoplewit hedegenerativeconditi onsshould not havetowaituntiltheyareclearly worsebeforethesystemrecognisestheirneed .Degenerative conditionssuchasm ultipleSclerosis arepermanentneurologicalcondition s.There is no cure.Everyperson withMultiple Sclerosissi ndiff erent.Earli interventionisa priority,access totheNDISmust remain.Youcannotputpeop lewithMult ipleScle rosisinonebuckettoBeassessedbyanautomatedsystem. 1
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2248
Eligibility, Access And Early Intervention
One Of My Biggest Concerns Is That The Bill May Reinforce A Model Where People:
- Must Be More Severely Disabled To Access The Scheme (“No early intervention”)
- Need To Be More Severe To Remain On The Scheme “Not eligible anymore.”
- Have To Go Through Continued Rigorous Processes And Assessments Before Their Support Needs Are Fully Recognised; Even Then They Might Not Be Fully Supported Or Will Have Support Category Cuts Across The Board And For Some When Their Functioning Is Manageable Only Because Supports Received By Participants Make Possible. Perticularly If Participant Works But Can Do So Only Due to Supports Outside Employment Support: This Approach Is Wrong. I Am Very Concerned This Could Create Widespread Distress Instability Uncertainty Within The Disability Community Particularly For Those Already Experiencing Significant System Fatigue Fear Around Supports.Early Intervention Should Mean Early Intervention.For Progressive Conditions Timely Support Helps Preserve Function Maintain Employment Manage Deterioration Protect Mental Health Prevent Avoidable Crises.Waiting Until Someone Is Worse Harmful Person Often More Expensive System.This Especially Important For People With Permanent Degenerative Conditions Whose Symptoms Invisible Intermittent Hard Capture Brief Assessment.Fatigue Brain Fog Pain Heat Sensitivity Weakness Balance Problems Cognitive Changes Can Be Severe Physically Capable.A System That Only Recognizes Visible Decline Misses Real Disability.early intervention can reduce the need for higher supports in future.People with degenerative conditions should not have wait until clearly worse before system recognizes their needs.The public health cannot support ongoing chronic degenerative condition that impacts functioning daily basis.It is designed provide constant,ongoing and targeted supports.Ihave personal experience early intervention on scheme.supports a broader human rights approach.the bill considered light of right people disability live independently participate community life access they need do so.NDIS funding mechanism framework participation dignity autonomy inclusion.If reforms make harder progressive disability accessing supports maintain continuity challenge unfair decisions then Bill risks undermining those rights.right-based must work permanent but unpredictable.
Impact Of Constant Change And System Fatigue
People In The Community Not Only Dealing Disability.Deal NDIS Continually.New Rules New Assessments Terminology Funding Settings Provider Rules Evidence Expectations Fears Reduction Create Fatigue.For Many This Fatigue Administrative Emotional Physical Causes Anxiety Distress Sense Instability Makes Fear Supports MayDisappear Even When Their Has Changed.System Itself Becomes Another Source Impairment.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2248
The Bill should not intensify this. If the Government wants change to the scheme, it must reduce uncertainty, not increase it. Only then will things change for the better, supporting a sustainable scheme.
The NDIS should direct people’s energy toward living their lives, not toward endless administrative survival. So there must be a better way forward.
Major concerns with the Bill’s broader provisions
In addition to the above I am concerned by the direction of the Bill across several other areas.
First, reassessment and eligibility settings may become too rigid for people with fluctuating or degenerative conditions. If the system relies too heavily on standardised snapshots, it may underestimate true need.
Second, funding controls and support category changes may reduce flexibility. For people with degenerative conditions, community participation, support coordination, therapy and daily assistance are often essential to stability, not optional extras. As participants we do our best to create a support ecosystem that helps us manage well, and by rattling that system there will be hospitalisations, increased reliance on other health systems and significant changes in the person’s disability.
Significant reductions to social and community participation funding could severely limit some participants’ ability to safely access appointments, food, social connection and community life, increasing isolation and reducing functional independence. Community disability organisations do not have the capacity to support people who need to leave their home as participants have become intwined in their eco-system they have built, worked hard to build so they can participate in society. I am concerned that approaches which reduce participant choice and control, or move people into models that do not reflect their individual support needs, may increase distress, reduce safety and negatively impact wellbeing for some participants. I urge you to read other submissions that talk about this; I do not have the capacity to sight research and evidence around this.
Third, automated systems and overly standardised decision-making may risk overlooking nuance. Disability is not always measurable through a template or algorithm. If the system decides too much based on generic criteria, it will fail people whose needs are complex or variable. Some degenerative conditions with fluctuating function are at high risk of decline if their disability picture is not fully considered.
A human with a disability needs human interaction to conduct assessments, review them and interpret so that they receive appropriate supports, or on a basic level check that the plan is correct and suitable for the participant.
Fourth, integrity measures should target fraud and provider misconduct, not create more barriers for participants. People with disability should not be treated as though they are the problem. The 2024 reform has already changed a participant’s funding landscape dramatically: cuts, lists, stricter rules and less autonomy have been enough. The focus should be on provider fraud and misconduct as priority.
Fifth, provider reform and market reform should not make it harder for participants to keep trusted workers or continuity of support. For people with degenerative conditions, trusted relationships matter. Support workers are not interchangeable when fatigue, cognition, communication, mobility or personal care are involved.I am also concernedthat significant market disruption may reducecontinuityofcareworkforce stabilityandtheavailabilityofof experienced providerswithspecialiseddisabilityknowledge.
National Disability Insurance Scheme Amendment Bill 2026
Submission 2248
Sixth interaction with broader NDIS reforms: This bill is a silo reform alongside others where foundational supports aren’t in place yet. Where significant changes need making there’s well-known principles for managing these; however no one has informed participants about how this operates practice-wise: The key principles found include clear rationale understanding, stakeholder identification & consultation, system transparency collaborative leadership empowerment, focused attention towards people, dynamic adaptation. Unfortunately none aligns here leading broken change management process leaving disabled behind. Broader NDLS reforms don’t match Australia’s Strategy which aims inclusive participation. This Bill increases administrative barriers reducing flexibility risking loss social community supports (see page). If removed daily life would be unsafe bathroom access impaired vision unsteady risk falling. Support workers help move safely prepare breakfast assess day type dietitian occupational therapist physiotherapist sessions adapted as declined developed resources education to worker me. Cuts such activities reduce independence increase isolation worsen functioning long-term support needs other allied health cuts double isolation further reduce my remaining independent.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2248
There are also currently no established foundational supports available that could replace the supports I receive through the NDIS. I am resilient, but resilience does not remove disability. Even resilient people can fall, literally and figuratively.
I have deleted most of what I have written in this section because protecting vulnerability is a priority when you are participant in the scheme, and maintaining personal privacy and dignity is important when living with a permanent disability.
In short, without the NDIS, I would lose the consistent supports that allow me to function safely and participate in daily life. I would significantly struggle to attend appointments, access food, manage my condition safely, or continue the strategies that help prevent further decline.
What I ask the Committee to recommend
The Committee should amend so:
- People with progressive and degenerative conditions aren’t disadvantaged due to rigid eligibility reassessment settings;
- People don’t wait until they’re worse before early intervention becomes accessible;
- The Scheme recognizes invisible fluctuating disabilities may be apparent only after multiple assessments, support decisions based on real functional needs over time rather than snapshots at one point;
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2248
Closing
The Committee should carefully consider the human cost associated with this bill. People living in disabilities do not require systems which force repeated proof or reward delays until their condition deteriorates; instead we need schemes early response mechanisms protecting dignity while recognizing permanent progressive illnesses prior crises being precipitated.