Submission 2248

CONFIDENTIAL

I do not wish for my name to be made public due to privacy reasons as a person with a disability and 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 and from a person who has been trying to understand all the changes with NDIS since the reforms began in 2024 along with my peers. I ask that my personal details not be made public.

I am writing to oppose the Bill in its current form because I am concerned it will worsen access, increase distress, and reduce safety for people living with disability. The Bill may be intended to improve sustainability and integrity, but sustainability is not achieved if people are pushed out of the scheme, under-supported, or forced to wait until their condition becomes more severe before they can receive help.

My experience as an NDIS participant, and the experience of many in the disability community, is that the NDIS has become a source of system fatigue. People are exhausted by constant change, repeated reassessment, shifting evidence rules, and the emotional strain of having to prove disability over and over again. For people already managing pain, fatigue, cognitive load, provider instability and everyday functioning, that fatigue can become severe distress. Further change must not add to that burden.

I support the idea of a sustainable NDIS. I do not support reforms that make the system more rigid, more standardised, or less responsive to real life. A system designed around cost control first and human need second will inevitably miss people whose disability is not static, particularly people with permanent degenerative disabilities.

Request

I ask that you read my submission with respect and care, as a person with a disability this submission has taken me a significant amount of time and days of stopping and starting. It has caused me stress and has heightened my symptoms that affect functioning. My eyes hurt, its hard to read more, its difficult to see clearly. I am using a visual occlusion card. With help I was able to complete it. If I have not referenced appropriately or referred to things as a professional would I hope you understand my message and why I oppose this bill. This is based off my understanding and personal experience as an NDIS participant.

Why this Bill matters for people with degenerative conditions

This Bill should not be treated as though all disability is the same. Progressive and degenerative conditions are different from static impairments because support needs can change over time, symptoms can worsen, functioning can decline, and early intervention may reduce the need for higher supports in future. People with degenerative conditions should not have to wait until they are clearly worse before the system recognises their need.

Degenerative conditions such as Multiple Sclerosis are permanent neurological conditions. There is no cure.

Every person with Multiple Sclerosis is different. Early intervention is a priority, access to the NDIS must remain. You cannot put people with Multiple Sclerosis in one bucket to be assessed by an automated system.

Submission 2248

If the NDIS is redesigned in a way that depends too heavily on a single snapshot of function, people with fluctuating progressive disability may be disadvantaged even when their underlying condition is permanent and serious.

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 and even then may not be fully supported or will have support category cuts across the board And for some, when their functioning is manageable only because of supports a participant receives. Particularly if a participant works and can only do so because of supports, supports that are outside employment support. That is the wrong approach.

I am very concerned this could create widespread distress, instability and uncertainty within the disability community, particularly for people already experiencing significant system fatigue and fear around supports. Early intervention should mean early intervention. For progressive conditions, timely support can help preserve function, maintain employment, manage deterioration, protect mental health and prevent avoidable crises. Waiting until someone is worse is not only harmful to the person, it is often more expensive for the system.

This is especially important for people with permanent degenerative conditions, whose symptoms may be invisible, intermittent or hard to capture in a brief assessment. Fatigue, brain fog, pain, heat sensitivity, weakness, balance problems and cognitive changes can be severe even when a person looks physically capable. A system that only recognises visible decline will miss real disability.

Early intervention can reduce the need for higher supports in future. People with degenerative conditions should not have to wait until they are clearly worse before the system recognises their need. The public health system cannot support an ongoing chronic degenerative condition that impacts functioning on a daily basis. It is not designed to support that load, it is not designed to provide constant, ongoing and targeted supports.

I have personal experience with early intervention on the scheme.

Support for a broader human rights approach

The Bill should be considered in light of the rights of people with disability to live independently, participate in community life and access the support they need to do so. The NDIS is not just a funding mechanism; it is a framework for participation, dignity, autonomy and inclusion.

If reforms make it harder for people with progressive disability to access supports, maintain continuity or challenge unfair decisions, then the Bill risks undermining those rights. A rights-based scheme must work for people whose disability is permanent but not always predictable.

The impact of constant change and system fatigue

People in the disability community are not only dealing with disability. They are dealing with an NDIS system that seems to change continually. New rules, new assessments, new terminology, new funding settings, new provider rules, new evidence expectations and new fears about reductions all create fatigue.

For many people, that fatigue is not just administrative. It is emotional and physical. It causes anxiety, distress and a constant sense of instability. It makes people fear that their supports may disappear, even when their disability has not changed. The system itself becomes another source of impairment.

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 degenarative 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 the appropriate supports, or on a basic level check that the plan is correct and suitable for the participant.

Fourth,

inegrity 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 the 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 concerned that significant market disruption may reduce continuity of care, workforce stability and the availability of experienced providers with specialised disability knowledge.

Submission 2248

Sixth, interaction with broader NDIS reforms. This bill is not a standing silo of reform, its alongside other broader reforms where things are still not in place yet. Such as foundational supports. They are nowhere to be seen. Where there is significant change to be made there are well known principles of change management that need to be followed. So far as part of reforms and now the bill foundational supports have not been identified, and no one has been informed. I remain concerned that many participants and families do not yet understand how broader reforms and supports will operate in practice. Here is an example of key principles to change management I found on an Australian government website:

The principles for managing successful structural change are:

• A clearly defined rationale and vision of the change is understood
• Stakeholders are identified, appropriately consulted and informed
• The system and processes developed to achieve the change are transparent
• Collective and collaborative leadership is empowered
• There is a dedicated focus on people
• The change is systematically reviewed and adapted.

Unfortunately, I do not see any of these principles in place to assist with broader reforms and supports for people with a disability on the NDIS. A breakdown in these principles ends in a broken change management process. And in this instance, people with a disability are left behind.

It is also very clear that the broader NDIS reforms do not align with Australia’s Disability Strategy 2021– 2031, which says governments must remove barriers and build an inclusive Australia where people with disability can participate as equal members of the community. I am concerned that this Bill moves in the opposite direction for NDIS participants with degenerative and fluctuating conditions, by increasing administrative barriers, reducing flexibility and risking loss of supports, including reduced social and community participation supports (see page 24).

           If I was removed from the NDIS, this is what my daily life
                     would look like.

I wake up and often cannot safely move to the bathroom without assistance. My vision can be impaired, I become unsteady, and I feel at risk of falling. A support worker helps me move safely, prepares breakfast, and assesses what type of day my disability is causing me to have. It has taken many sessions with a dietitian, occupational therapist and physiotherapist to figure out how to manage this and has had to be adapted as things have declined. They have developed and provided resources and education to support workers and me.

Cuts to supports such as social and community participation would not simply reduce activities. They would reduce my independence, increase isolation, worsen my functioning, and increase my long-term support needs. Cuts to other allied health supports I have (I do not want to mention them here due to privacy concerns) will certainly double the isolation, change my functional capacity further and reduce my independence that I do have left.

If the system becomes too rigid, inaccessible or exhausting to navigate, people like me will suffer significant harm from “system fatigue” alone.

I want to note that mainstream systems are already insufficient. When psychology supports were removed from my NDIS plan, I was forced to rely solely on public health funded sessions through my GP. Those sessions are limited and quickly exhausted. I already use mainstream services wherever possible, and they do not meet the complexity or intensity of my disability-related support needs.

                                     4

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 I ask the Committee to recommend that the Bill be amended so that:

• people with progressive and degenerative conditions are not disadvantaged by rigid eligibility or reassessment settings;
• people are not forced to wait until they are worse before early intervention or access is available;
• the Scheme recognises that invisible and fluctuating disability may not be apparent in a single assessment;
• support decisions for degenerative and similar conditions are based on real functional need over time, not just short-term snapshots;
• system fatigue and repeated reform are acknowledged as real harms affecting participants’ wellbeing;
• integrity measures target fraud and misconduct, not participant burden;
• human rights, dignity, autonomy and community participation remain central to the NDIS.
• people with degenerative conditions currently on the scheme are not disadvantaged by working (modified) and can only do so BECAUSE of supports in place
• people with degenerative conditions such as Multiple Sclerosis who are current participants are appropriately supported to navigate ANY scheme change and are not kicked off because of processes that do not adequately recognise fluctuating disability and long-term functional impact.
• people with degenerative conditions such as Multiple Sclerosis who are currently on the scheme remain on the scheme without rigorous further assessments to prove the permanence of their condition Questions for the Committee
  1. How will this Bill ensure that people with progressive degenerative conditions are not forced to wait until they are worse before they can access or keep support?
  2. What safeguards are in place to protect people whose disability is permanent but fluctuating?
  3. How will the Bill ensure that early intervention remains available for degenerative conditions rather than being delayed until deterioration is obvious?
  4. How will invisible disability, including fatigue, cognitive change, pain and variable functioning, be properly recognised?
  5. How will the Bill protect participants from system fatigue caused by repeated reforms, reassessments and evidence demands?
  6. How will the NDIS continue to respect the human rights of people with disability to live independently and participate in community life?
  7. What protections exist to ensure that automated or standardised decisions do not override individual circumstances?
  8. How will the Bill avoid creating a system where people with permanent degenerative conditions are treated as though their disability is not serious unless it becomes severe enough?

Submission 2248

Closing

I ask the Committee to look carefully at the human cost of this Bill. People with disability do not need a system that makes them prove themselves again and again, or that rewards delay until their condition has deteriorated. We need a scheme that responds early, protects dignity, and recognises the reality of permanent degenerative conditions before people are pushed into crisis.

If the NDIS is meant to be a scheme that supports people through disability, then it must not be reshaped into one that waits for people to fail before it helps them. The Committee has the opportunity to recommend changes that preserve sustainability without sacrificing fairness, safety and human rights. I urge you to take that opportunity.

Lastly, I wrote a quote because I couldn’t find one fitting enough for my submission.

Those who seek to make change without ‘human’ input are only as humane as the worst change they implement.

I truly hope that these proposed changes will not be put into place.

Thank you