Submission 3297 — Name Withheld — NDIS Future Generations Bill

Personal Submission

Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitter Name withheld - NDIS participant

Location

Date 27 May 2026 Publication request I request that my name and identifying personal/contact details be withheld if the Committee publishes this submission. This submission contains sensitive personal and family material, including references to suicide attempts and system trauma.

I am not asking the Committee to resolve an individual NDIS complaint. I am providing lived evidence about the risks of the Bill for people whose disabilities were not recognised or safely supported by mainstream systems before the NDIS. My experience is directly relevant to the Bill provisions about functional capacity, permanence, mainstream supports, reasonable and necessary supports, support determinations, plan suspension, and future planning rules.

Executive summary  I ask the Committee to recommend that the Bill not proceed in its current form. At minimum, it must be amended to protect individualised, reasonable and necessary supports for people with permanent and significant disability.  The Bill appears to assume that people should exhaust mainstream supports and treatment before relying on the NDIS. I already did that. Mainstream services were not able to recognise or safely respond to my disability needs, especially the presentation of autism in women and girls.  Before the NDIS, I was misdiagnosed, misunderstood and repeatedly treated through systems that did not understand what was happening. I attempted to take my own life multiple times under that mainstream system.  With the NDIS, and with the right supports and funding combined, I have had years without engaging in those behaviours. That is not accidental. It is evidence that disability support works when it is properly funded and matched to the person.  The Bill must not force people back into the same mainstream systems that already failed them. It must also not force children, particularly autistic girls and young people who mask, to lose years of safety while waiting for mainstream systems to catch up.

Recommendations

1. Do not pass the Bill in its current form. Amend it so that Scheme sustainability cannot override individual disability-related need, safety, dignity, autonomy and human rights.

2. Amend the proposed permanence/treatment provisions so that “all appropriate treatment” means treatment that is available, safe, evidence-based, trauma-informed, disability-affirming, culturally safe and likely to materially improve functional impact. It must not mean endless, forced, harmful, unaffordable, unavailable or non-neuroaffirming treatment.

3. Require functional capacity assessments to consider fluctuating capacity, masking, autistic burnout/regression, trauma, sensory regulation, executive functioning, communication, continence, physical safety, informal support limits, and the real consequences of removing supports.

4. Do not allow broad Ministerial support determinations or budget resets to remove or reduce social, civic, community participation, capacity building daily activities, or daily living supports without co-design, disallowance safeguards, individual review rights and evidence of safe alternatives.

5. Prevent plan suspension or revocation for non-contact unless the NDIA has completed a genuine safeguarding process, including accessible communication attempts, contact with authorised supporters/nominees, advocacy referral, and urgent human review.

6. Do not shift people out of the NDIS until mainstream and foundational supports actually exist, are funded, accessible, locally available, neuroaffirming and capable of meeting complex disability needs.

7. Include specific safeguards for late-diagnosed autistic women, girls and gender-diverse people, and for people whose disability has historically been misread as behavioural, mental illness, non-compliance or family dysfunction.

8. Why this submission matters The purpose of the NDIS should not only be to reduce cost growth. Its purpose must be to prevent disabled people from being left to deteriorate until they are in crisis. My life is an example of what happens when mainstream systems are treated as enough, and when disability is missed, minimised or misunderstood.

I am an NDIS participant in South Australia. I am autistic and have complex support needs that affect daily living, communication, regulation, executive functioning, safety, participation and my ability to navigate systems. I have also lived with the consequences of being unsupported and misunderstood for many years before I had the right disability framework around me.

I am not against reform. I support action against fraud, exploitation and poor-quality providers. But reform must not punish participants who rely on the NDIS because mainstream systems have already failed them. It must not make disabled people prove they are broken enough, traumatised enough, isolated enough or unsafe enough before they are believed.

2. I already did what the Bill appears to be suggesting A central concern I have with the Bill is the renewed emphasis on treatment, mainstream systems and whether another service system should be responsible before the NDIS steps in. In theory, that may sound reasonable. In practice, for people like me, it repeats the exact pathway that caused harm.

Before the NDIS, I did use mainstream support. I used every viable option available to me. I went through general practice, mental health supports, counselling, medication, crisis-type responses and other mainstream pathways. I did not come to the NDIS because I had avoided treatment or because I did not try hard enough. I came to the NDIS after those systems failed to understand the disability underneath my distress.

The mainstream system did not recognise the presentation of autism in girls and women. My autism was missed. My needs were misunderstood. My distress was treated as the problem, rather than as a sign that my environment, supports and expectations were wrong for my disability. I was misdiagnosed and mistreated. I was left trying to survive in systems that were not built to understand me.

That failure had consequences. Under the mainstream system, before I had the right disability supports, I attempted to take my own life multiple times. This is not included to shock the Committee. It is included because the Bill is about future generations, and because the Committee needs to understand what can happen when people are sent back to systems that already failed them.

For me, the NDIS was not a luxury. It was not an optional extra. It was the first system that had the potential to look at my functional needs rather than simply treating my distress as an individual defect. When the right supports and the right funding combined, the best outcomes became possible. I have had years without engaging in those behaviours. That outcome should be protected, studied and learned from - not undermined.

3. Mainstream services are not automatically safe or suitable The Bill and associated materials refer to clearer boundaries between the NDIS and mainstream services, and to considering whether treatment can alleviate or remedy an impairment. The Government fact sheet also says permanence would be tightened so that access is only granted where all appropriate treatment has been undertaken, no other treatment is likely to materially improve the impact of the impairment, and the impairment is likely lifelong.

The problem is that mainstream does not mean appropriate. Mainstream does not mean safe. Mainstream does not mean available, neuroaffirming, trauma-informed or informed about female autism. A person can spend years doing what they are told to do, attending appointments, trying interventions and following professional advice, while still not receiving support that meets the disability need.

For autistic women and girls, the risk is especially high. Many of us are misread. Masking is mistaken for capacity. Shutdown, burnout or meltdown can be mistaken for behaviour. Trauma from repeated misunderstanding can be mistaken for the primary problem. Executive dysfunction can be mistaken for non compliance. Sensory overload can be mistaken for attitude. The result is that people are pushed through mainstream systems for years without the disability being properly understood.

If the Bill requires people to prove they have exhausted treatment or mainstream options, it must include strong safeguards. It must recognise that some treatment can be inappropriate even if it is available. It must recognise that neuroaffirming support is not the same as behaviour control. It must recognise that refusing harmful or unsuitable treatment is not the same as refusing help.

4. Functional capacity must reflect real life, not a snapshot The Bill proposes a legal framework for determining access based on substantially reduced functional capacity, with a future threshold and assessment process. Functional capacity must not become a narrow checklist that rewards masking and punishes people who can appear capable for a short period.

My capacity is not accurately captured by asking what I can do once, on a good day, under pressure, while being assessed. The relevant question is what I can safely, reliably and repeatedly do across ordinary life, without causing deterioration, crisis, burnout, injury, family breakdown or loss of basic stability.

An assessment that ignores masking will miss autistic women and girls. An assessment that ignores trauma will blame the person for adaptations they developed to survive. An assessment that ignores informal support will assume family capacity that may no longer exist. An assessment that ignores the cost of doing a task will wrongly record the task as “independent” even where the consequence is collapse, meltdown, shutdown, crisis or days of recovery.

Functional capacity must include the support a person needs to communicate, plan, initiate tasks, manage daily living, leave home safely, regulate, participate in community, maintain health routines, gather evidence, respond to official notices, manage appointments, and use their NDIS plan. A plan that looks adequate on paper is not adequate if the participant cannot safely implement it.

5. Community access, daily living support and capacity building are protective supports The fact sheet says the Bill would allow the Commonwealth Minister to make determinations to reduce funding for groups of supports, including resetting participant support budgets for social, civic and community participation and capacity building daily activities. This is alarming because those supports are often the supports that keep people out of crisis.

For me, support with daily living, community access, regulation, planning and participation is not a lifestyle add-on. It is what makes ordinary life possible. It is what allows me to have safety, predictability, dignity and a chance of stability. When supports are correctly matched, they reduce crisis. They reduce reliance on emergency systems. They reduce harm to families and carers. They allow people to participate before they have deteriorated beyond repair.

A narrow view of essential care is dangerous. The support that stops a person from falling into crisis may look less urgent than the support that responds after the crisis has already happened. But prevention is exactly what the NDIS should be doing. Removing or reducing these supports in the name of sustainability risks creating the very costs, harms and emergencies the Scheme is supposed to prevent.

6. My family is evidence that unsupported years do not simply disappear The harm from missed disability support did not only affect me. One of my siblings missed years of safety. The other one doesn’t even know I exist. My mother was traumatised by those years. My family relationships

have been damaged to the point that I no longer have the family support policymakers may assume is available. When systems leave disabled children and young people unsupported, the consequences can echo across an entire family for decades.

This matters because the Bill refers to equity, sustainability and other service systems, but the unpaid family system is often treated as if it is endless. It is not. Informal supports can collapse. Family members can become traumatised. Relationships can be lost. A person can reach adulthood without the family safety net the system assumes they have, precisely because the system failed them earlier.

If the Committee is considering the future of the NDIS, it must consider the cost of years without support. Do not make thousands of children go through what I went through. Do not make them miss the years of safety that I missed. Do not wait until their families are traumatised, relationships are broken, and the person has already been harmed before recognising that disability support was needed all along.

7. Plan suspension and revocation provisions are unsafe without safeguards The fact sheet says the Bill would allow the NDIA to suspend a plan after reasonable attempts to contact a person and revoke participant status if the plan has been suspended for at least 90 days and the NDIA has not been able to contact them. This is dangerous for disabled people who struggle with communication, executive functioning, trauma, health crises, homelessness, family violence, hospitalisation, digital access, or fear of official systems. It also lacks the practical knowledge the largest group of people unable to be reached for a significant amount of time, is the NDIA, Planners and LAC’s, not participants.

Non-response is not proof that a person no longer needs the NDIS. For many participants, non-response can be a sign that support is needed. If a person cannot safely open letters, answer calls, interpret NDIA correspondence, meet deadlines or organise evidence without support, suspending their plan will not solve that problem. It will make the problem worse.

Before any plan is suspended or status revoked, there must be a genuine safeguarding process. The NDIA should be required to use accessible communication, contact authorised supporters or nominees, check whether the person has a support coordinator or advocate, consider disability-related communication barriers, and provide urgent human review. Essential supports should not be stopped because the person most in need could not navigate the system quickly enough, especially when the NDIA can’t maintain its own timelines.

8. Sustainability must include the cost of harm prevented The Bill would require the NDIA to consider Scheme sustainability and equity when deciding reasonable and necessary supports. Sustainability matters, but it must not become a broad justification for cutting supports that prevent deterioration.

My experience shows that the right supports can change the trajectory of a life. When I was in mainstream systems without the right disability understanding, I deteriorated. When the NDIS funded disability supports that matched my needs, I stabilised. That is value for money in the deepest sense: fewer crises, fewer unsafe situations, less family harm, more dignity, more participation and more chance of ordinary life.

A support should not be treated as poor value because it is ongoing. Permanent disability often requires ongoing support. The question should be whether the support reduces functional impact, increases safety, maintains capacity, prevents deterioration, supports participation and reduces reliance on crisis systems. For many people, the cost of support is far less than the human and financial cost of leaving them unsupported.

9. What I ask the Committee to do I ask the Committee to listen to participants who have already lived through the mainstream-first approach. I ask the Committee to recognise that for many of us, the NDIS was not accessed before mainstream supports were tried. The NDIS was accessed because mainstream supports had already failed to understand disability.

Please do not make me go back. Please do not make future generations go through the same pathway of being misunderstood, blamed, misdiagnosed, mistreated and left to deteriorate before support is finally recognised. Please do not create a system where children, especially autistic girls and young people who

mask, have to lose years of safety before someone decides their disability is permanent and significant enough.

The NDIS should be secured by protecting what works: individualised support, choice and control, proper functional assessment, early recognition of disability needs, neuroaffirming practice, funded daily living and community supports, and safeguards against exploitation. It should not be secured by pushing disabled people back into systems that have already shown they cannot meet the need.

Closing statement When the right supports and the right funding combine, the best outcomes can happen. My life is evidence of that. Please amend this Bill so that people like me are not forced back into unsafe systems, and so that future generations of disabled children do not lose the years of safety that I lost.

Source notes

1. Senate Community Affairs Legislation Committee, inquiry page for the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026: date referred 14 May 2026, reporting date 16 June 2026, and submission extension authorised until Monday 1 June 2026. The page states that personal experiences are welcome but must specifically address aspects of the Bill.

2. Australian Government Department of Health, Disability and Ageing, NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 fact sheet, publication date 14 May 2026. The fact sheet summarises Schedule 1 access and planning measures, including functional capacity, support determinations, plan renewal, reasonable and necessary supports, plan suspension, permanence and access to other services.

3. The same fact sheet summarises provisions about provider registration, records, 90-day claim times, pricing and automation. Those issues are more relevant to separate carer/provider submissions, but some safeguards are relevant to this personal participant submission.

4. Parliament of Australia, Senate guidance on making a submission: best submissions are relevant, concise, begin with a short introduction, emphasise key points, and include how problems can be addressed. This submission is structured around those principles while remaining a lived-experience submission.