PERSONAL SENATE INQUIRY SUBMISSION INTO: NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT.
Date: 9th of July 2026 Submitted by: Personal, NDIS participant. Bill: Securing the NDIS for Future Generations Bill of 2026.
Table of Contents
1.1 Introduction: ………………………………………………………………………………… 1 1.2 How the NDIS has benefited me: ………………………………………………………. 1 1.3 Concern 1: Changes to the definition of permanent disability …………………. 2 1.4 Concern 2: Impact on people with rare and complex disabilities …………….. 2 1.5 Concern 3: Reliance on alternative services ……………………………………….. 3 1.6 Concern 4: Capacity building and community engagement ……………………. 4 1.7 Concern 5: Funding reductions and sustainability measures ………………….. 4 1.8 Concern 6: Making the NDIS more diMicult to access ……………………………. 4 1.9 Why this bill should not pass …………………………………………………………… 5 1.10 Conclusion ………………………………………………………………………………….. 5
1.1 Introduction: Dear, Committee Secretary.
I write to you today as a disabled person & NDIS participant, whose life has been drastically improved because of this scheme.
It has oJered me dignity, privacy, agency, purpose and independence. It has increased my quality of life & capacity, allowed me to re-engage with community. Helped support me to study, build & maintain social connections, it provides me the support I need for personal care & my daily living needs. It has lightened the burden on myself, my community and family. There is no doubt, it is essential to my livelihood & wellbeing.
Which is why I am deeply concerned I about the proposed National Disability Insurance Scheme Amendment and the impact it will have on me and many others.
1.2 How the NDIS has benefited me: The NDIS has greatly improved my quality of life & capacity. OJering me my autonomy & independence.
It supports me to:
- Participate and engage with community
- Access education & opportunities. 1
- Receive the personal care I need safely with my dignity and consent.
- increase my capacity and overall wellbeing
- Meet my daily living needs
- Maintain and build relationships with others. Without support It would become drastically harder & even impossible to have any of these met. These are things all people need to maintain their dignity, connection, wellbeing & quality of life. This amendment is dangerous, NDIS is crucial.
1.3 Concern 1: Changes to the definition of permanent disability A major concern I have is in the change of the definition for “permanent disability” that will require all participants to undergo all “appropriate” treatments before receiving support. This proposal is a violation of our bodily autonomy & consent and treats us as a problem to be “fixed” & solved while completely disregarding any of our own personal experiences, preferences & needs.
In my personal experience treatment trials often come with:
- Exhaustion
- Lost time & waiting periods
- Financial costs
- Reduction in your wellbeing & capacity
- Medical Side eJects & adverse reactions
- Harmful risks including surgical complications
- Negative impacts on your mental health, trauma & loss of trust in medical professionals.
All of which I’ve had personal first-hand experience with & should not be forced to undergo again, especially not to prove what I already know, which is that I am disabled and need support. I know my body, I live in it every. Single. day. We are not problems to be “fixed” disability is a natural part of human existence, one that many of us will experience at some point, but for some people like me our disability is permanent and lifelong. NDIS should not require us to unwillingly undergo endless treatments, that will delay us from getting the care and support we need. Making an already exclusionary and hard application process even more rigged against the poor, isolated and unsupported of us who do not have the time, money, capacity or resources to undertake this. Quite frankly, this proposal feels unjust and lacks any real understanding of disability and people’s experiences, I believe this proposal is dehumanising and treats us as unconsenting experimentations, rather than people.
1.4 Concern 2: Impact on people with rare and complex disabilities As someone with a complex disability. My condition is frequently misunderstood and far harder to manage and diagnose. These proposals would have a direct negative impact on people like me, who are already more likely to struggle receiving the adequate medical care and support needed.
With issues such as:
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- Delayed diagnosis times
- Frequent misinformation & lack of understanding from others
- Higher healthcare costs
- Increased risk of adverse medical reactions, injury and illness
- Limited specialist options
- A medical system that is ill-fit for us
- Isolation
- Lack of Medicare or health insurance coverage. Our disability supports should be about us & what we need, not what treatment options are available to us. Many of us have experienced significant medical trauma & injury because the system is not designed for us. This proposal is a slap in the face to all the appointments we attended, countless hours of research and years of waiting & searching desperately for our diagnosis’s just to lose all our supports or be forced to undertake further medical harm & cost. The functional capacity testing does not understand fluctuating capacities & symptoms and proving a disabilities permanence will be incredibly risky, expensive & exhausting for people like me with rare & complex conditions.
1.5 Concern 3: Reliance on alternative services This bill relies on the idea that alternative services can compensate for the supports provided from the NDIS. However, this is not at all reflected in my personal experiences.
The healthcare system is already overwhelmed and is:
- not disability accessible or accommodating
- often Lacks the adequate staJing or funding needed
- has extended wait times & limited capacities
- is not trained or equipped to care for people with disabilities. Yet without addressing or resolving ANY of these issues you will be forcing disabled people with no other choice, to be hospitalized. Which will push further burden onto our overfilled hospitals, in-adequately disability trained healthcare workers and further pressure onto our medical systems, that are not designed or equipped to care for us. Leading us to significant trauma, distress, isolation, health issues and even death.
I have been left stranded and alone in Australian hospitals for hours, in hallways, on floors, I’ve been left waiting for hours for assistance to use the bathroom. I have been left in my own urine. Ive had to wait days, if at all, to shower. I have had nurses and doctor’s breakdown and cry in front of me due to the stress of not being able to care for me. Majority of the time they do not know what my disability is or even how to care for someone like me. Hospitals in Australia already have long wait times, not enough beds or staJ. The system how it is, cannot handle this drastic of a shift and disabled people and their families will pay the ultimate price.
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1.6 Concern 4: Capacity building and community engagement Capacity building & community access are essential to me and my wellbeing as a disabled person. They are what make my life worth living! Stripping them away and reducing them would be incredibly cruel & harmful. They are what oJer me my independence, purpose & joy without them my health, mental wellbeing, relationships & education are not possible.
Without community engagement I’m left isolated & unable to participate in the world around me. Can you imagine what that is like? To be trapped & alone, living just to survive…
My capacity building has continually oJered me many health and wellbeing benefits, overall increasing my quality of life & independence. It is essential I can continue to maintain and build my capacity to decrease my risk of severe muscle atrophying, negative health outcomes and mental & physical deterioration, which leads to higher costs and higher support needs in the long run.
Removing or reducing the funding for these categories is incredibly short sided and harmful. It will lower our life qualities & make us far more dependent.
1.7 Concern 5: Funding reductions and sustainability measures This bill will punish disabled people like me who need support rather than addressing the core issue: disability is costly, partly because of inaccessibility and mostly because of NDIS loading fees, which can be extortionate but are not the fault of participants but specific providers. Yet, this bill does nothing to address any of that and makes disabled people bear the responsibility for the systems we did not create. Already costs have increased for me and many others, not only due to the economic status of this country and the world but due to the current government pushback and lack of support, these changes will not necessarily save money, but they will guarantee that it is used less eJectively.
This amendment will make the scheme harder to navigate, less beneficial and directly harm its participants, preventing us from accessing what we need.
It is not sustainable, it is cruel. The wording implies disabled people should be made to suJer for the future of disabled people, when the market and providers will continue to profit from us with 0 accountability. We are penalised for the extortions from the people who seek to profit from us, with this bill the power imbalance and extortion would only worsen.
This is a bill about us that is not being created by us and that is incredibly concerning. This proposal clearly shows that no one backing this bill have ever had to navigate this system and witnessed all the added costs.
1.8 Concern 6: Making the NDIS more diMicult to access The NDIS application process is already exhaustive, expensive and time consuming, I do not believe under any circumstance it should it be made any harder or less
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accessible than it already is. Often it isn’t even possible without enough money, time or support at your disposal. Many people who desperately need NDIS cannot even take on the application process itself. It requires long & expensive reports that most professionals refuse to do, frequent meetings & reviews, ability to meet the confusing and incredibly narrow specifications, phone calls & knowing the correct wording, it is a very lengthy process that requires an intense amount of attention, mental & physical energy. This bill will only further extend and acerbate these issues, it’s incredibly harmful especially when the opposite is needed.
1.9 Why this bill should not pass Already since the announcement of this bill on the news, I have experienced an increase of ableism in my day-to-day life, and many providers have increased costs out of fear of losing funding. This is not acceptable. This bill threatens my autonomy, freedom & livelihood. It punishes disabled people for the systems and costs we are not responsible for. It is harmful, detrimental and unfair.
I believe this bill should not pass at all and if it does, it will cost disabled people their livelihoods, wellbeing’s, freedoms and in many cases their lives and you will bear that responsibility.
1.10 Conclusion The NDIS has dramatically transformed my life for the better and I am so thankful for it. It has given me independence, dignity, community & capacity.
I do not want to imagine what my “life” will be reduced to without it…
This bill threatens everything I have gained so far and risks causing significant harm to me and all disabled Australians.
I strongly urge the Committee to reject this Bill entirely and to oppose any changes that:
- Alter the definition of permanent disability.
- Require participants to exhaust all possible treatments first.
- Reduce access to capacity building or community participation supports.
- Restrict support for people with rare or complex disabilities.
- Shift responsibilities onto systems that are not equipped to provide adequate support.
This bill is incredibly short sided and disabled Australians, quite frankly, deserve better.
So, I ask that you please, not let this bill pass or let any of these changes be made.
Thank you, for your time and consideration.
Yours sincerely, NDIS participant.
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