Late-diagnosed autistic woman and carer's experience of NDIS rejection (Family or carer experience)

Submission 2743

Senate Community Affairs

Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au Date: 31 May 2026

Submission from

NDIS Participant | Autistic Advocate | South Australia

Table of Contents

Introduction……………………………………………………………………………………………………………………………………1

Executive Summary………………………………………………………………………………………………………………………..1

How This Bill Will Cause Harm: Provision by Provision……………………………………………………………………1

1. The ‘All Appropriate Treatment’ Requirement Will Be Used to Reject People Indefinitely…………………….1

2. Standardised Assessments Cannot Capture Fluctuating and Episodic Disability………………………………..2

3. Ending Funding Carryover Makes Some Funding Permanently Inaccessible …………………………………….3

4. Financial Sustainability Has Replaced Human Need as the Purpose of the Scheme ………………………….4

5. Informal Supports and Carer Presumptions Ignore Intergenerational Disability ………………………………….4

6. Automated Decision-Making Without Enforceable Safeguards ………………………………………………………..5

7. The ‘Directly’ Test Dismantles the Whole Person …………………………………………………………………………..5 This Bill Doesn’t Reform the NDIS, it Hurts Participants…………………………………………………………………..6

8. The Media Campaign Caused Direct Harm to Disabled People……………………………………………………….6

9. The True Cost of Removing 160,000 People to Foundational Supports that Don’t Exist ……………………..6 Summary of Recommendations………………………………………………………………………………………………………8

Conclusion …………………………………………………………………………………………………………………………………….9

References …………………………………………………………………………………………………………………………………..10

Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

Introduction

I welcome the opportunity to submit to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a late-diagnosed autistic woman and the primary carer of an autistic son whose NDIS application was rejected two weeks before this Bill was announced. I make this submission as both an autistic participant and someone who has spent much of my professional life working in complex systems and public-facing environments. I am someone who has already seen what happens when this scheme fails, and whose life, and whose son’s future, depends on it not failing further.

In response to concerns about this Bill, the Prime Minister said: ‘consistent with my philosophy of no one being left behind, no one will be removed without somewhere for them to go.’ My son already has nowhere to go. We are not a hypothetical. We are what being left behind looks like.

This Bill must not proceed in its current form. The NDIS has real problems, but this Bill does not fix them. Instead, it punishes the people the scheme was built to serve while leaving the actual sources of waste and fraud untouched. It will cause direct harm to life and safety, to people like us who have no alternative.

The purpose of disability policy is not merely to manage expenditure. It is to ensure that disabled Australians can participate in society on an equal basis with others. Any reform that reduces access to support should be assessed against that principle.

Executive Summary

 This Bill will increase exclusion from the NDIS.

 The proposed assessment framework is not validated for autistic participants.

 The removal of funding carryover will make some supports permanently inaccessible.

 The Bill prioritises financial sustainability over participant need.

 The Bill assumes informal supports are available and sustainable.

 Automated decision-making lacks enforceable safeguards.

 The “directly” test undermines the whole-person approach.

 Foundational supports are not ready to replace NDIS supports.

 The Bill should not proceed in its current form.

This submission makes 9 recommendations.

How This Bill Will Cause Harm: Provision by Provision

1. The ‘All Appropriate Treatment’ Requirement Will Be Used to Reject People Indefinitely The Bill requires people to exhaust all appropriate treatments before accessing the NDIS, and overturns the Federal Court’s decision in NDIA v Davis, which found that if a treatment exists but cannot realistically be accessed due to cost, geography, or other barriers, this should not bar NDIS access.

This provision is not hypothetical for our family. It is already operational, and it is already causing harm. Two weeks prior to the announcement of this Bill, my son’s NDIS application was rejected on the grounds that not all available and appropriate treatment options had been explored.

My son has received professional intervention and support since infancy. Developmental concerns were formally documented by childcare professionals before he turned two. By age seven he had been referred for psychological assessment by the Department of Education and was under the care of a paediatrician. At

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

age eight he commenced fortnightly speech pathology, where he was assessed with receptive language deficits placing him in the bottom 2% of children his age. Private speech therapy continued for five years. Throughout his schooling he accessed home schooling support and completed core subjects on a modified curriculum. Despite more than two decades of documented, multi-disciplinary intervention, and the fact that his functional deficits were documented as persisting across all domains of daily life, we were told this was insufficient evidence for him to receive the support of the NDIS.

We are a family in financial crisis and survive by accessing community pantries. To fund the assessments required to apply to access the NDIS, we asked our retired parents to give up thousands of dollars from their pension to fund the process. When the rejection came, I had to tell them they wasted what little money they need to survive on each week, for nothing. I feel we ate stale bread, picking around the mould, for nothing. We are now left with no other option than to sell my engagement ring in the hope that yet another assessment, another report, will adequately explain my son’s support needs.

Overturning Davis will deepen this harm. It will mean that a treatment a family cannot afford, cannot reach, or cannot access due to their disability can still be used to bar them from the scheme. My family is both financially disadvantaged and regionally limited in what we can access. This provision will be used against families like ours indefinitely, because an undefined threshold is a threshold that can always be moved.

The Committee should ask the government how many current and future participants are expected to be excluded under the revised treatment requirement, and how many of those people will have no realistic access to the treatments identified.

RECOMMENDATION 1: The ‘all appropriate treatment’ requirement be explicitly defined in the legislation, with clear and accessible criteria published by the NDIA. Where a rejection is issued on this basis, the NDIA must specify in writing exactly what treatment options have not been explored and how the applicant can access them. Support can only be refused on the basis that another system should provide it where the participant has actual, accessible, and timely access to that system. A theoretical alternative is not an alternative.

2. Standardised Assessments Cannot Capture Fluctuating and Episodic Disability The Bill introduces a standardised assessment tool to determine functional capacity for NDIS access, replacing the current approach where people can use reports from their own treating practitioners. The tool proposed is the I-CAN, the Instrument for Classification and Assessment of Support Needs. Assessors are not required to have an allied health background.

The NDIA has itself confirmed that, without further development, the I-CAN tool is not fit for purpose1. The Australian Autism Alliance has stated it cannot be endorsed for autistic participants until rigorous validation shows it can reliably capture the diversity of our support needs2.

A snapshot assessment assumes that the person in the room on that day is a reliable representation of the person who will need support tomorrow, next week, and next year. For autistic people with fluctuating and episodic disability, that assumption is wrong.

My capacity is not fixed. It shifts with sensory load, with stress, with accumulation. I have interoception differences, meaning I do not reliably sense my own internal states. I often do not know how depleted I am until I have already collapsed. On a good day I can appear capable, articulate, and functional. On a bad day I cannot speak. Both are me.

Masking has trained me to ignore my limits long after I have reached them. I once had a miscarriage during a job interview and still continued. I was bleeding, I was grieving, and my body was losing a child. But my masking was so complete, so automatic, so ingrained into me by a lifetime of having no other option, that not one person in that room knew. I performed through one of the worst moments of my life smiling and demonstrating a level of competence so complete that I was hired for the job. An assessor who does not understand autism, using a standardised tool, will only see the mask that hides my true support needs.

My son’s 10-second processing delay was documented repeatedly across every report submitted to the NDIA. When I raised it directly with a NDIA representative, he said he was not aware of it and did not recall

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

reading it. That is not an isolated failure of one staff member. That is what happens when the people making decisions about our lives are too overworked to read the evidence we were required to spend thousands of dollars to produce. My son presents as verbal and cooperative in a structured setting. He cannot remember his own address. He cannot leave his room. A snapshot will show a young man who gives the right answers. It will miss the young man who actually lives here.

The Committee should ask the NDIA whether the I-CAN tool has been independently validated for autistic participants and publish the evidence supporting its use.

The success of any assessment system depends not only on the quality of the tool itself, but on the workforce available to administer it. The Committee should seek evidence on how many assessors will be required, what qualifications they will hold, what training they will receive, and how consistency of decision making will be monitored. A poorly implemented assessment system will create appeals, complaints, delays, and administrative costs that undermine any projected savings.

RECOMMENDATION 2: The I-CAN assessment tool not be used to make eligibility or funding decisions until it has been independently validated for autistic participants. Assessors must receive mandatory autism-specific training delivered by lived-experience professionals before conducting assessments. Assessments must account for masking, fluctuating capacity, episodic disability, interoception differences, and communication and sensory processing differences including auditory processing, and must be conducted over multiple occasions where a single snapshot is insufficient. The assessment process itself must be accessible, with reasonable adjustments made to the environment, format, and communication method to reflect each participant’s needs. Participants must have a statutory right to dispute an assessment outcome on the basis that it does not reflect their actual functional capacity.

3. Ending Funding Carryover Makes Some Funding Permanently Inaccessible The Bill removes the ability to carry unspent funding into the next plan period. For people with fluctuating and episodic disability, unspent funding is not evidence of a plan that was too generous. It is evidence of a disability that prevented consistent service use.

Masking leads to autistic shutdown and burnout. I worked 136-hour weeks on the front line of the COVID-19 response for several years. Over this time, I stopped eating and sleeping. I agreed to download footage of suicide victims while I was experiencing suicidal ideation myself, because I did not know how to say no. What followed was months of autistic shutdown and chronic burnout. I lost the ability to speak. I lost the ability to perform basic functions. I lost skills I had spent decades building. In less than three years I went from executive consulting to unable to work or obtain a single referee.

Autistic burnout and shutdown are not choices. During those periods I cannot speak, cannot engage with providers, and cannot leave the house. Under the proposed system, funding I cannot access during these periods disappears. I am penalised for having the disability I have.

The harm of this provision goes beyond lost funding in a single period. I want to give this Committee a concrete example of what removing carryover means in practice for my pathway back to work.

My current plan includes funding to support my return to employment. When I was first on the NDIS this was provided as a lump sum, allowing me to work with a provider to be assessed and determine my ongoing employment support needs. When I was moved to a five year plan, that funding was split across the entire period. It accumulates gradually. I have to wait for sufficient funding to build up before I can use it.

Under the proposed changes, if my plan renews before enough funding has accumulated to reach the threshold required to use it, the unspent amount disappears. The clock resets. I begin accumulating again from zero. I could spend years accumulating funding I can never access, because the threshold to use it will always be just beyond what a single plan period allows me to build.

The funding exists. The intent exists. The Bill removes the mechanism that makes it usable. This is not a hypothetical risk. This is my pathway back to work, made structurally impossible by a drafting decision. That decision will cost the NDIS nothing to fix and will cost me everything to live with.

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

RECOMMENDATION 3: The removal of funding carryover not proceed without specific protections for participants whose disability, including autistic burnout, episodic mental illness, and fluctuating conditions, prevents consistent service use, and for participants whose funding accumulates gradually toward a threshold they cannot reach if carryover is removed.

4. Financial Sustainability Has Replaced Human Need as the Purpose of the Scheme This is what our week looked like. Our food and incidentals budget stretched to cover hospital parking, medical appointments, and antibiotics. I skipped meals trying to make ends meet. When a tyre went flat we could only afford a second-hand replacement. I relied on family to take me to appointments because we could not afford the petrol. I cried when the GP bulk billed my appointment. We were managing a family member recovering from surgery, a friend in hospital with stage four cancer, and the NDIS appeal process for my son, simultaneously, with no clear information about how it works and no energy left to find out.

This is not a crisis that arrived suddenly. This is the waterline we live at. And the supports that keep our heads above it are exactly what this Bill proposes to cut.

Section 3(1)(d) rewrites the fundamental purpose of the NDIS so that supports are provided only so far as consistent with the financial sustainability of the scheme. Section 31, which directed planning to be individual, choice-led, and participant-directed, is repealed in full. Every planning decision must now have regard to scheme sustainability. This is not a technical amendment. It encodes into the legislation the proposition that the financial health of a government scheme takes precedence over the needs of the disabled people it was built to serve. I am completely dependent on my husband to survive. I will retire with approximately $150,000 in superannuation. Without the NDIS I have no realistic path back to work and no capacity to grow. The scheme is not a safety net for my family. It is the floor we stand on. This provision removes the floor and calls it savings.

RECOMMENDATION 4: Section 3(1)(d) be amended so that financial sustainability is one consideration among many, not an override that takes precedence over individual need. Section 31, which directed planning to be individual, choice-led, and participant-directed, be restored.

5. Informal Supports and Carer Presumptions Ignore Intergenerational Disability Section 34(1K) requires that formal funded supports only be provided where relying on informal supports would expose a participant to material risk of harm, abuse or neglect. Below that threshold, the expectation is that family members provide the support. The Bill also introduces a presumption that parents provide substantial care and support for their disabled children. Neither provision accounts for families where the carer is themselves disabled.

I am completely dependent on my husband to survive. Under this provision, that dependence could be used to justify not funding my supports, because my informal network exists. The Bill does not ask whether that dependence is sustainable. It does not ask whether it is dignified. It does not ask what it costs my husband, or what happens to me when he reaches his limit.

I am also my son’s primary advocate and support. I navigate systems on his behalf, translate requirements he cannot process, and absorb the administrative and emotional load of fighting for his access to care. The Bill presumes I am doing this from a position of full capacity. I am not. On days when I am in burnout or shutdown I cannot speak. I cannot drive. I cannot navigate systems. I cannot be the support person my son needs, because I am the person who needs support.

This is what intergenerational disability looks like. Multiple disabled people in the same family, each theoretically available to support the other, each living with a disability that affects their capacity to do so, and no formal recognition of what that actually costs any of them. We are a house of cards. The Bill would look at us and say we have sufficient support. We don’t.

RECOMMENDATION 5: Section 34(1K) be amended to require that informal support arrangements be assessed for sustainability, dignity, and the capacity of the carer, including where the carer is themselves disabled. The parental responsibility presumption be amended to account for parents with disability.

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

6. Automated Decision-Making Without Enforceable Safeguards The Bill authorises automated decision-making for plan content, payments, and claims from seven days after Royal Assent. The safeguards written into the Bill are not legally enforceable.

I have auditory processing difficulties. Throughout our family’s experience with the NDIA, I have repeatedly requested written communication only. Despite these requests and formal complaints, the NDIA continued to contact me by phone. When I receive an SMS telling me someone from the NDIA is going to call, my hands begin to shake and my teeth chatter before the phone even rings. It is an immediate trauma response that can quickly escalate into a crisis. Each call places me at risk of hypertensive crisis and stroke. The NDIA is not required by statute to communicate accessibly.

This is a human system, with human staff, who genuinely try but are often constrained by technology that cannot reliably surface accessibility requests or act on them consistently. The NDIA regularly tells participants to ignore automatically generated letters because the system cannot be turned off. If the current system cannot reliably tell a staff member that a participant has requested written communication only, we should be deeply concerned about trusting it to make automated decisions about people’s lives at greater scale and with no person accountable for the outcome.

Australia has already lived through what happens when welfare systems make automated decisions about vulnerable people without enforceable safeguards. It was called Robodebt. It destroyed lives. It killed people3. This Committee should not allow that history to repeat in the NDIS.

RECOMMENDATION 6: Automated decision-making not proceed until safeguards are legally enforceable and human review of all adverse decisions is guaranteed. The Committee must satisfy itself that the protections built into this Bill are sufficient to prevent the harms caused by Robodebt from repeating. Accessible communication with participants be made a statutory obligation, not an administrative courtesy, with enforceable consequences where the NDIA fails to comply.

7. The ‘Directly’ Test Dismantles the Whole Person The Bill adds a single word to the reasonable and necessary test. Supports will only be fundable if the need arises “directly” from a qualifying impairment. That word erases the reality of how disability actually works.

My needs do not arise from a single impairment in isolation. They arise from the intersection of autism, anxiety, trauma, depression, and perimenopause. I am a whole person whose conditions interact constantly and cannot be neatly separated. The sensory processing differences that make phone calls harmful are not separate from the trauma that makes hospitals unsafe, which is not separate from the burnout that affects my capacity to work, which is not separate from the interoception differences that mean I do not always know how unwell I am until a crisis arrives. These are not individual problems. They are one life.

I attend an all-abilities movement class. To a planner applying the “directly” test it may look like leisure. From the inside it is sensory regulation, somatic therapy, emotional regulation, confidence, and social connection, the only social connection available to someone whose disability makes unstructured social interaction exhausting and unpredictable. It is one of the supports that keeps me safe and functional between everything else. It does not look like medicine, but it works like medicine. The “directly” test could remove it because it cannot be traced in a straight line back to a single diagnosed impairment. That is not because the connection does not exist. It is because disability does not work in straight lines.

Removing the whole of person approach does not make the scheme more efficient. It makes it less accurate. It will fund supports that do not match what people actually need, and remove supports that are holding people together in ways that do not show up in a single diagnostic category.

RECOMMENDATION 7: The word “directly” be removed from section 34(1)(aa), restoring the whole of person approach to the reasonable and necessary test. The NDIS must be able to fund supports that arise from the intersection of a participant’s conditions, not only supports that can be traced in a straight line to a single diagnosed impairment. Disability does not work in straight lines, and a test that requires it to do so will systematically exclude the supports that are most effective for people with complex and intersecting conditions.

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

This Bill Doesn’t Reform the NDIS, it Hurts Participants

8. The Media Campaign Caused Direct Harm to Disabled People The introduction of this Bill was preceded by a deliberate media campaign that framed NDIS participants as a budget problem, a source of waste, and through the repeated use of terms like mild autism and mild to moderate needs, as people who did not truly deserve the supports they were receiving.

The language of mild autism is not imprecise. It is a policy choice. It frames some disabled people as undeserving in order to make cuts politically palatable. While autism support needs vary significantly between individuals, autism is not clinically diagnosed as “mild” or “severe” in the way these terms have been commonly used in public debate4. There is no version of autism that does not affect the whole person, across every context, across every day of their life. I believe that the government knew, or should have known, what that language would do to people already fighting their own internalised ableism.

Since my son’s NDIS rejection and the media coverage of these proposed reforms, I am getting worse. I have increased my daily anxiety medication. I have started taking Valium. I am going out less. I am having more meltdowns, more shutdowns, more periods of burnout. Almost all of my NDIS support is now directed at surviving each day and supporting my son through his rejection, leaving nothing for the recovery and capacity building the scheme was supposed to make possible. The constant public message that people like me, like my son, are a burden, a rort, a cost to be managed, does not exist in a vacuum. It impacts me directly, and it is making me less safe.

This campaign harms all disabled Australians already fighting every cruel thing they have ever believed about themselves. That there is shame in needing help, in not being able to do what everyone else appears to do effortlessly, in being too much, or in not being enough. This campaign told our community that every feeling they have ever had of uselessness, hopelessness, or worthlessness was true. This campaign told our community that we are the problem.

Whether intended or not, the effect has been harmful, foreseeable, and avoidable.

RECOMMENDATION 8: The government issue a formal apology to the disability community for the harmful and clinically inaccurate language used in the public campaign to introduce this Bill, specifically acknowledging the use of the terms mild autism and mild to moderate needs as stigmatising, clinically baseless, and deliberately deployed to frame disabled people as undeserving. The government commit to ending the use of deficit-based language in all government communications about disability and the NDIS. Co-designed consultation with the disability community on repairing the harm caused must be led by disabled people and disability representative organisations, must be adequately resourced and accessible, and must precede any further public communication about NDIS reform.

9. The True Cost of Removing 160,000 People to Foundational Supports that Don’t Exist Section 3(1)(d) is where the campaign becomes legislation. It rewrites the fundamental purpose of the NDIS so that supports are provided only so far as consistent with the financial sustainability of the scheme. This is not a technical amendment. It encodes into the bones of the Act the proposition that a government budget takes precedence over the needs of the disabled people the scheme was built to serve. It is the legal expression of everything the media campaign was designed to establish.

The practical result is this. Government statements indicate that approximately 160,000 people who would otherwise have been expected to enter or remain within the scheme will instead be redirected to foundational supports by the end of the decade5. Those foundational supports do not yet exist in any meaningful form. The Prime Minister said no one will be removed without somewhere to go. There is nowhere to go. The system that is supposed to catch 160,000 people has not been built.

I am one of the 160,000. I am likely to be removed from this scheme. I want this Committee to understand what that means in human terms, not as a statistic, but as a life.

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

I am alive because of the NDIS. I do not say that as a figure of speech. Before the NDIS I did not have the scaffolding to survive myself. I live with depression attacks6, a phenomenon specific to autistic experience, described by Attwood and Garnett as sudden and intense periods of suicidal ideation that arrive without warning and overwhelm the system completely. I have made attempts. I have been hospitalised. These are not history. They are the reality I manage, with support, every day.

Without the NDIS I will not leave my home. I will have no capacity to repair the damage of spending a lifetime without a diagnosis, without the tools, strategies, or understanding of my own body that earlier intervention provides. I will remain vulnerable and unsafe in ways that are invisible to every system that is supposed to help me. I will die early. Research has consistently found elevated mortality among autistic people compared with the general population, particularly where support needs are unmet7 8. I do not want that to become my future. My mother died at 58. Her father died at 68. My uncle and my cousin took their own lives. I do not want to die. But without appropriate support, I do not believe a different outcome is inevitable for me. The NDIS is the first time in my life the system has invested in changing that trajectory. This Bill ends that investment.

Every support removed from the NDIS does not remove the underlying need. It simply moves that need somewhere else. When people lose disability supports, they still require healthcare, crisis services, mental health treatment, housing assistance, emergency department presentations, and family support. The question is not whether governments will pay the cost. The question is which part of government will pay it. History consistently shows that crisis responses cost more than prevention. The government’s answer to removing 160,000 people from the NDIS is foundational supports9. The foundational supports model currently under discussion emphasises lower-intensity supports such as information, capacity-building, peer support, navigation assistance, and community-based services10.

I have attended every program available to me. I have done every course. I have studied mental health and wellbeing, an undergraduate psychology course, trying to build the self-knowledge that a diagnosis in childhood might have given me. Those things have value. But they are not the same as a monthly OT appointment. They are not the same as a weekly movement class that regulates my sensory system and gives me the only social connection I can reliably manage. They are not the same as a support worker who helps me to leave the house and build connections in my community. These supports are not much. But they are what keep me alive.

The Prime Minister said no one will be removed without somewhere to go. There is nowhere to go. The foundational supports that are supposed to catch 160,000 people do not yet exist. I am one of those people.

The Committee should ask which foundational supports are currently operational, where they are available, and how many people they are capable of supporting.

RECOMMENDATION 9: The planned removal of 160,000 people from the NDIS not proceed until foundational supports are fully designed, funded, legislated, and operational in every state and territory. Foundational supports should not be considered operational until they are available in every state and territory, publicly accessible, appropriately funded, staffed by suitably qualified personnel, and independently evaluated for effectiveness. An independent whole-of-government cost analysis must be publicly released before any eligibility changes take effect, examining what Medicare, mental health services, hospitals, housing, and the justice system will spend absorbing what the NDIS drops. Those costs do not appear in the NDIS budget line. They are paid by taxpayers. And the evidence consistently shows they cost more than the support that was cut. Saving money in the NDIS by shifting costs to other systems is not a saving. It is an accounting trick

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

Summary of Recommendations

While each provision of this Bill creates risks in its own right, their combined effect is greater than the sum of their parts. A participant may be excluded through the treatment requirement, assessed through a tool that does not accurately capture their disability, denied supports because informal care is assumed to be available, and redirected to foundational supports that do not yet exist. The Committee should assess the cumulative impact of these provisions, not merely each provision in isolation.

1. The ‘all appropriate treatment’ requirement be explicitly defined in the legislation, with clear and accessible criteria published by the NDIA. Where a rejection is issued on this basis, the NDIA must specify in writing exactly what treatment options have not been explored and how the applicant can access them. Support can only be refused on the basis that another system should provide it where the participant has actual, accessible, and timely access to that system. A theoretical alternative is not an alternative.

2. The I-CAN assessment tool not be used to make eligibility or funding decisions until it has been independently validated for autistic participants. Assessors must receive mandatory autism-specific training delivered by lived-experience professionals before conducting assessments. Assessments must account for masking, fluctuating capacity, episodic disability, interoception differences, and communication and sensory processing differences including auditory processing, and must be conducted over multiple occasions where a single snapshot is insufficient. The assessment process itself must be accessible, with reasonable adjustments made to the environment, format, and communication method to reflect each participant’s needs. Participants must have a statutory right to dispute an assessment outcome on the basis that it does not reflect their actual functional capacity.

3. The removal of funding carryover not proceed without specific protections for participants whose disability, including autistic burnout, episodic mental illness, and fluctuating conditions, prevents consistent service use, and for participants whose funding accumulates gradually toward a threshold they cannot reach if carryover is removed.

4. Section 3(1)(d) be amended so that financial sustainability is one consideration among many, not an override that takes precedence over individual need. Section 31, which directed planning to be individual, choice-led, and participant-directed, be restored.

5. Section 34(1K) be amended to require that informal support arrangements be assessed for sustainability, dignity, and the capacity of the carer, including where the carer is themselves disabled. The parental responsibility presumption be amended to account for parents with disability.

6. Automated decision-making not proceed until safeguards are legally enforceable and human review of all adverse decisions is guaranteed. The Committee must satisfy itself that the protections built into this Bill are sufficient to prevent the harms caused by Robodebt from repeating. Accessible communication with participants be made a statutory obligation, not an administrative courtesy, with enforceable consequences where the NDIA fails to comply.

7. The word “directly” be removed from section 34(1)(aa), restoring the whole of person approach to the reasonable and necessary test. The NDIS must be able to fund supports that arise from the intersection of a participant’s conditions, not only supports that can be traced in a straight line to a single diagnosed impairment. Disability does not work in straight lines, and a test that requires it to do so will systematically exclude the supports that are most effective for people with complex and intersecting conditions.

8. The government issue a formal apology to the disability community for the harmful and clinically inaccurate language used in the public campaign to introduce this Bill, specifically acknowledging the use of the terms mild autism and mild to moderate needs as stigmatising, clinically baseless, and deliberately deployed to frame disabled people as undeserving. The government commit to ending the use of deficit-based language in all government communications about disability and the NDIS. Co designed consultation with the disability community on repairing the harm caused must be led by

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

disabled people and disability representative organisations, must be adequately resourced and accessible, and must precede any further public communication about NDIS reform.

9. The planned removal of 160,000 people from the NDIS not proceed until foundational supports are fully designed, funded, legislated, and operational in every state and territory. Foundational supports should not be considered operational until they are available in every state and territory, publicly accessible, appropriately funded, staffed by suitably qualified personnel, and independently evaluated for effectiveness. An independent whole-of-government cost analysis must be publicly released before any eligibility changes take effect, examining what Medicare, mental health services, hospitals, housing, and the justice system will spend absorbing what the NDIS drops. Those costs do not appear in the NDIS budget line. They are paid by taxpayers. And the evidence consistently shows they cost more than the support that was cut. Saving money in the NDIS by shifting costs to other systems is not a saving. It is an accounting trick.

Conclusion

I support genuine reform that improves accountability, reduces fraud, and ensures long-term sustainability, but reform must strengthen support rather than restrict access to it.

I have told the NDIA that I would give up my own NDIS place if it meant my son could have one, even if it costs me my life. I said I have lived a full life, and I want my son to have that opportunity. I said that if that means I become one of the statistics, I can be at peace with that.

But I am not at peace with it. I said it because I have spent my whole life putting other people’s needs before my own, and I did not yet have the support to know I was doing it again. The NDIS is teaching me that my life has value too. That I deserve to be here. That the catch-up is worth completing. This Bill would take that away before the lesson is finished.

We are a beautiful, loving family. We laugh easily and love deeply. We are rich in experience, in warmth, in each other. And almost no one who looks at us would know that we are drowning. The supports this Bill proposes to cut are the hands that are holding us up. They are not much, but to us, they are everything.

My son sits in his room. His skin is pale from lack of vitamin D. He is gentle, funny, creative, and beautiful, and we have spent his whole life working to protect that. Without the NDIS, his soul will diminish. The person we have fought so hard for will disappear quietly, unseen and unsupported, while the system that was supposed to help him looks the other way.

The cumulative effect of these reforms is not only reduced support. It is reduced trust. Participants who believe the system no longer exists to support them are less likely to engage with it, disclose their needs, or seek help before reaching crisis point.

We pay high taxes in this country because we take care of each other. Because we believe that every person deserves a future. My son deserves a future. So do I. We are asking this Committee not to take his future before it has even begun.

NDIS Participant | Autistic Advocate | South Australia

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Submission 2743

Senate Community Affairs Legislation Committee

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

References

1 Falkingham, R. (2025, February). Testimony at Senate Estimates. Parliament of Australia. Reported in Conway Consulting Group. Retrieved from conwaygroup.com.au

2 Australian Autism Alliance. (2026). Statement on I-CAN assessment tool. Retrieved from australianautismalliance.org.au

3 Royal Commission into the Robodebt Scheme. (2023). Report of the Royal Commission into the Robodebt Scheme. Retrieved from royalcommission.gov.au

4 Senate Select Committee on Autism, Parliament of Australia. (2021). Services, support and life outcomes for autistic Australians. Retrieved from aph.gov.au/Parliamentary_Business/Committees/Senate/Autism/autism/Report

5 Butler, M. (2026, April 22). National Press Club address. Reported in The Nightly. Retrieved from thenightly.com.au

6 Garnett, M. & Attwood, T. (2021). Suppression of emotions in autism can lead to increased depression. Attwood & Garnett Events. Retrieved from attwoodandgarnettevents.com

7 Hirvikoski, T., et al. (2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208(3), 232–

238. doi:10.1192/bjp.bp.114.160192 8 Mouridsen, S.E., et al. (2008). Mortality and causes of death in autism spectrum disorders: An update. Autism, 12(4), 403–414. doi:10.1177/1362361308091653

9 Australian Government Department of Health, Disability and Ageing. (2026, February 3). Thriving Kids fact sheet. Retrieved from health.gov.au

10 Grattan Institute. (2026). What should foundational supports look like for people ineligible for the NDIS? Retrieved from grattan.edu.au

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