National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
Submission to the Community AƯairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
26th of May 2026
To the Committee Secretary,
I am writing as an autistic and ADHD woman, parent of three neurodivergent children, carer, and member of a family directly impacted by the ongoing reform of the NDIS.
My family has lived the reality of what happens when disability systems assume resilience without recognising the cost of surviving. We are not “coping” simply because we continue to function. We are exhausted from carrying the financial, emotional, administrative and caregiving burden that systems increasingly shift onto families under the language of sustainability, flexibility and informal supports.
At the same time, I also want to acknowledge that the NDIS, when it works as intended, has been life changing for both me and my family.
Without the support of my Occupational Therapist, Psychologist and support workers, I do not believe I would be alive today.
As someone who was late diagnosed, much of my life was spent believing I was failing at things that seemed to come naturally to everyone else. I internalised years of shame, masking, burnout and self-blame without understanding why everyday life felt so diƯicult.
Through the support of the NDIS, I have finally begun to understand that I was never broken. Instead, I have come to understand that many of our communities, systems and environments were never designed with accessibility or neurodivergence in mind.
With the support of my therapists and support workers, I have begun learning and implementing strategies that have allowed me to survive, regulate, parent more sustainably and remain present for my children.
Those supports have not simply improved my quality of life. They have helped keep me alive.
They have also ensured that my three autistic children still have their mother.
The NDIS has helped provide access to therapies, supports and understanding that we could not have sustained alone. It has helped create opportunities for my children to participate more safely in school and community life. It has allowed us to better
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
understand our children’s needs and reduce some of the pressure that previously existed entirely within our household.
Most importantly, the NDIS has helped create moments of connection, confidence and belonging for my children that would otherwise have been much harder to access.
This submission is therefore not an argument against the NDIS. It is an argument for protecting the intent of the scheme and ensuring reforms do not move further away from the people the system was designed to support.
My position is that these reforms risk moving the NDIS further away from its original purpose: enabling disabled Australians to participate equally in society.
Clarifying Eligibility and Permanent Disability
One of the greatest concerns I have regarding the proposed reforms is the way disability continues to be understood through narrow and often externally visible definitions of functioning.
As someone who was late diagnosed, I spent most of my life believing that my struggles reflected personal failure rather than disability. Because I could mask, work, parent and appear outwardly capable, the impact of Autism and ADHD on my daily life was repeatedly overlooked — including by myself.
For many late-diagnosed autistic adults, masking was not a choice. It was survival. Decades spent suppressing needs, monitoring behaviour, forcing social compliance and trying to appear acceptable comes at a significant psychological cost.
Now, while still unpacking my own identity and disability, I am simultaneously trying to protect my children from internalising the same shame and self-rejection that shaped my own life.
Disability cannot always be accurately measured through whether someone appears functional from the outside.
Many disabled people survive for years by overcompensating, masking distress and sacrificing their own wellbeing simply to meet expectations that were never designed with accessibility in mind.
The danger of increasingly narrow eligibility frameworks is that systems begin measuring how well a person performs normality rather than the true cost of performing it.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
The cost of masking and functioning through inaccessible environments can at times become so debilitating that a task that may be achievable under low-demand conditions becomes impossible under high-demand conditions.
For example, I may be able to complete grocery shopping during the “quiet period” ( 11am Thursdays) at Woolworths when sensory, social and cognitive demands are designed to be low. However, that same task may become entirely inaccessible at 5pm on a Thursday evening when the environment becomes crowded, loud, unpredictable and overstimulating.
From the outside, both situations may appear to involve the same functional task — grocery shopping. In reality, they are entirely diƯerent experiences in terms of sensory load, executive functioning demand, emotional regulation and physical exhaustion.
For my autistic children, they may be able to complete schoolwork successfully at home within a low-demand environment where they feel safe, supported and understood by trusted adults who can actively respond to their needs in real time.
However, that same work can become overwhelming and at times inaccessible within a school environment where the lights are bright, instructions are delivered verbally and rapidly, sensory demands are constant, social expectations are high and they are continuously comparing themselves to their peers.
From the outside, the task may appear identical — completing schoolwork. In reality, the cognitive, emotional and sensory demands are entirely diƯerent.
What is often misunderstood is that disability is not simply about whether a child can perform a task in one environment. It is about whether they can sustain that functioning safely and consistently across environments with varying levels of demand and without detriment to themselves.
When an assessor observes or assesses functionality on a single day, they are not seeing the broader reality of how that functionality fluctuates in response to changing variables that are often entirely outside the control of the disabled person.
Factors such as sensory load, fatigue, unpredictability, social pressure, changes to routine, communication demands, emotional regulation, environmental accessibility and cumulative burnout can dramatically alter a person’s capacity to function from one setting or day to the next.
As a result, assessments that focus narrowly on isolated observations risk creating an incomplete and inaccurate understanding of support needs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
For many autistic people, functioning in one moment is often achieved through significant masking, nervous system strain and delayed emotional consequences that may not become visible until hours or days later.
When systems fail to account for these fluctuating and cumulative impacts, they risk underestimating the level of support required to maintain safety, participation and wellbeing.
This can ultimately place disabled people at greater risk of crisis, burnout, mental health deterioration, school refusal, family breakdown and unnecessary reliance on hospitals and other acute health services that may have been preventable with appropriate early and ongoing supports.
Without support, many people continue functioning publicly while privately deteriorating.
The supports I receive through the NDIS are not luxuries. They are protective supports that have allowed me to remain alive, regulate safely, parent my children and participate in daily life in ways that were previously unsustainable.
Defining “Reasonable and Necessary” Supports
Too often, discussions around “reasonable and necessary” supports focus narrowly on budgets and functional outputs while failing to understand the broader role supports play in safety, regulation, belonging and long-term wellbeing.
In 2016 my husband D and I welcomed our twins, J and K . They were born six weeks prematurely and spent time in the NICU before coming home. From birth they were complete opposites — the ultimate definition of chalk and cheese.
When J was three, I started noticing diƯerences. I could never quite put my finger on it, but there were things he would do that felt diƯerent to other children. The twins loved dancing to The Wiggles, so I enrolled them in a toddler dance class. While the other children followed instructions, J spent the class running in front of the mirror, flapping his hands and moving to his own rhythm. After two weeks we were asked not to return because the class was “not suitable” for J and he was considered too disruptive.
We tried Kindy. After four weeks I was told that the group was not for children “like J ” and that I should consider removing him.
That year felt full of contradictions. Doctors and health professionals were telling me J was healthy and there were no concerns, while the community around us was making it clear there was not room for a child like him.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
J struggled transitioning to full-time school. Over the following years we attended countless appointments, occupational therapy assessments and speech assessments before J was eventually diagnosed with Autism and ADHD.
By six years old, J had already experienced significant rejection from the world around him. He felt lonely, misunderstood and excluded for simply being himself. He hated school and once told me:
“I wish people could see in my head and use my eyes, because it’s hard.”
That sentence captures something disability policy often misses. Disabled children are not only navigating functional challenges. They are navigating whether the world around them is willing to make space for them at all.
Too often, disability is assessed only through observable functioning rather than through the lived experience of the child themselves. The emotional and psychological impact of constantly feeling diƯerent, excluded or “othered” is rarely acknowledged within systems that focus narrowly on behaviour, productivity or compliance.
For many autistic children, the experience of moving through environments that were never designed for them creates a profound sense of alienation. They become hyperaware that they are diƯerent from their peers, that they are struggling in ways others are not, and that the world around them often responds to those diƯerences with frustration, exclusion or attempts to make them appear more “normal.”
This is not simply discomfort. It is the experience of chronic othering during critical stages of childhood development.
When children repeatedly experience rejection, exclusion, punishment for distress, or environments where they are unable to safely be themselves, this can create deep and lasting childhood trauma that they carry with them into adulthood.
Research into adverse childhood experiences has consistently demonstrated that repeated exposure to trauma, exclusion, chronic stress and unsafe environments places children at significantly increased risk of poorer long-term outcomes, including mental health challenges, substance misuse, disengagement from education, involvement with justice systems, homelessness, suicidality and reduced social and economic participation later in life.
Government systems are already aware of this evidence base.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
There is extensive research demonstrating the lifelong impact of childhood trauma, chronic stress and sustained experiences of exclusion on developing nervous systems, emotional regulation, health outcomes and long-term participation in society.
Yet despite this knowledge, policy reforms continue to move toward reducing supports, increasing barriers to access and placing greater pressure on disabled children and families to survive within systems that are already failing to provide genuine inclusion and safety.
When governments proceed with reforms that knowingly increase the likelihood of exclusion, burnout, unmet need and crisis for disabled children, there must also be accountability for the long-term consequences of those decisions.
These are not abstract policy settings. These are children.
This generation of disabled children will grow up remembering how systems responded to them, whether they were protected, whether they were believed, and whether their humanity was valued.
Government cannot continue to rely on future health systems, mental health systems, justice systems and crisis services to absorb the preventable harm created by policy decisions made today.
Nor should it be able to sidestep accountability for the long-term impacts those decisions will have on an entire generation of disabled children and their families.
The reality is that every school year still begins with the same fight.
Every year there are new teachers, new education assistants, new support staƯ and new promises. Every year I attend meetings, provide reports, explain J ’s needs again, contribute to Individual Education Plans and behaviour support plans, and advocate for accommodations that are supposed to help him access education safely.
Too often those plans are either not read, inconsistently implemented, or quietly abandoned once the school year becomes busy.
Each year I become “that parent” again — the overbearing mother, the diƯicult advocate, the one who emails too much, asks too many questions, and pushes too hard.
What people do not see is what happens after school.
They do not see the exhaustion from masking all day. They do not see the emotional collapse that comes from spending hours trying to survive environments that were never
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
truly designed for him. They do not see me trying to hold my child together while he spirals into self-hatred because he believes his brain is wrong.
They do not see me physically trying to stop my son from hurting himself in an attempt to “fix his brain” so he can be like everybody else.
That is the reality many families are living behind closed doors while simultaneously being told that supports are suƯicient, inclusion exists, and adjustments are being made.
The burden of inclusion is too often placed back onto disabled children and their families. Families are expected to educate systems, monitor systems, remind systems, and fight systems while carrying the emotional consequences when those systems fail.
This experience is not isolated to one child.
I repeat this advocacy constantly across all three of my children — at school, in community spaces, within activities, through healthcare systems and across everyday life. Every environment requires explanation, preparation, negotiation and emotional labour simply for my children to access spaces that other families move through without question.
Support is not simply about therapy hours or service delivery. It is about whether disabled children are able to experience safety, dignity, participation and belonging within their schools and communities.
Too often, disabled people are welcomed only when they can participate in ways that are comfortable, convenient and non-disruptive to others. The moment support needs become visible, complex or diƯicult, inclusion becomes conditional.
Families like mine spend enormous emotional energy trying to help our children believe they belong in a world that repeatedly signals otherwise.
Disabled people should not have to earn belonging by proving they are easy to support.
Sustainability Measures and Informal Supports
Much of the current reform direction appears built on the assumption that participants have strong informal supports available to absorb gaps in formal services.
For many families, this assumption is false.
In my own family, disability does not exist in isolation. I am autistic and ADHD. My children are autistic and ADHD. My husband has experienced periods where he has been physically incapacitated following surgery and unable to bear weight or participate in normal
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
caregiving responsibilities. During these periods, the caring load does not disappear. It shifts almost entirely onto me.
Yet policy settings continue to assume there is always another person available to step in.
There often is not.
My own family is an example of where there are no safe or sustainable informal supports available to step in and absorb additional caring responsibilities.
Our grandparents live too far away to provide regular practical support. Extended family members are working full-time, multiple jobs, or managing their own responsibilities simply to survive within the current economic climate. Our neighbours have only recently moved into the area and are still strangers to our family.
Yet disability policy increasingly assumes that “informal supports” will naturally exist and expand to fill the gaps created when formal supports are reduced.
I believe this assumption fundamentally misunderstands the reality many families are living.
Communities do not automatically become safe, informed and sustainable support networks without significant cultural change, education, accessibility and collective responsibility.
Expecting neighbours, friends or loosely connected community members to absorb complex disability support needs without broader societal understanding and role modelling is unrealistic.
If political leaders genuinely believe neighbors and communities can step into these roles, then there also needs to be visible leadership demonstrating what that looks like in practice.
When the Prime Minister, Ministers and policymakers are prepared to actively model what meaningful informal community support looks like for families like mine, then perhaps expectations around neighbor and community-based supports may begin to feel realistic.
Until then, many families are being assessed against assumptions of support networks that simply do not exist.
The step-down approach increasingly embedded within NDIS reforms assumes that:
families can continue absorbing unmet support needs indefinitely;
carers have unlimited functional capacity;
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
disabled parents can provide unpaid therapeutic coordination without consequence;
emotional exhaustion, burnout and administrative overload are not themselves disabling.
These assumptions are disconnected from reality.
The system frequently measures whether a family has survived, rather than whether they have suƯered harm in the process.
When disability supports are reduced or made harder to access, disability itself does not disappear. The cost is simply transferred elsewhere — into families, schools, hospitals, emergency departments, mental health systems, housing instability and crisis responses.
Families absorb the labour until they no longer can. Children absorb the emotional consequences until they no longer can. What is presented politically as “sustainability” too often becomes the redistribution of harm onto those least able to carry it.
Administrative Reform, Reassessments and Compliance Burden
The NDIS was intended to reduce barriers to participation. Increasingly, it creates them.
Families are expected to:
coordinate therapies,
navigate legislation,
source evidence,
manage providers,
understand changing operational guidelines,
challenge decisions,
advocate constantly,
absorb out-of-pocket costs,
and function as unpaid case managers.
This labour is invisible within policy discussions about “scheme sustainability”.
Administrative burden disproportionately impacts autistic people, ADHDers, people with cognitive disability, carers, and families already experiencing burnout.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
The current reform direction risks creating a system where only those with financial resources, education, advocacy capacity, or professional support can successfully navigate access to necessary supports.
That is not equity.
Increasingly, reforms appear focused on reviewing, scrutinising and reassessing disabled people and their families, while failing to examine the systems and structures that created many of these failures in the first place.
Families are repeatedly required to prove need, justify supports and demonstrate vulnerability, while the systems responsible for delivering inclusion, accessibility and coordinated care are rarely held to the same level of accountability.
Where is the transparency, accountability and full and frank disclosure regarding the NDIS’s own eƯiciency in delivering timely plans, reviews, decisions and communication to participants?
Quarter after quarter, public reporting continues to show key performance indicators relating to planning timeframes, review delays and participant communication are not being consistently met. Yet there appears to be limited transparent examination of the underlying systemic causes contributing to these failures, and limited public disclosure regarding what operational reviews, workflow audits or system redesign processes are being undertaken in response.
Instead, the burden of ineƯiciency is too often redirected back onto participants and families through additional reassessments, increased scrutiny and more administrative requirements.
Participants are expected to provide extensive evidence, detailed disclosure of their personal lives, repeated justification of disability impacts and ongoing demonstrations of vulnerability in order to access support. It is reasonable for disabled people and their families to expect the same standard of transparency, accountability and full and frank disclosure from the systems assessing and governing them.
Adding more public servants into an already overwhelmed and fragmented system does not automatically improve outcomes. In many cases, it can create additional layers of complexity, duplication and confusion for participants already struggling to navigate the system.
In most businesses and service systems, persistent ineƯiciency would trigger a detailed review of workflows, communication pathways, decision-making processes and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
operational bottlenecks to identify where delays and duplication are occurring and how they can be reduced.
Yet this same level of operational review and accountability does not appear to be applied with the same urgency to the systems disabled people are expected to rely upon for essential supports.
If the stated goal of these reforms is sustainability, then equal attention must be given to improving systemic eƯiciency, reducing administrative duplication and addressing internal bottlenecks within the NDIS itself — not solely increasing scrutiny on participants and families already operating beyond capacity.
Automated Decision-Making and Standardised Assessments
I am deeply concerned by reforms that prioritise narrowly defined “objective” evidence while diminishing the value of lived experience and human complexity.
Disabled people are experts in the realities of their own functioning, barriers and support needs.
Research evidence matters. But research is not neutral.
Many disability-related interventions, supports and functional impacts remain under- researched — particularly for autistic women and girls, ADHD presentations outside stereotypical models, complex disability presentations and disabled parents.
Standardised assessments and automated decision-making systems cannot fully capture the cumulative realities of disability, masking, burnout, trauma and family dynamics.
Many autistic people, particularly women, become highly skilled at masking distress in structured environments. This can create assessments that underestimate support needs because the emotional and cognitive cost of functioning remains invisible.
Disabled people often know what works for them long before the evidence base catches up.
A hierarchy that automatically privileges standardised evidence over lived experience risks entrenching systemic inequity while excluding the very people these systems are meant to support.
There is also significant community concern regarding the increasing reliance on automated systems and administrative decision-making within human services.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
Australia has already experienced the devastating consequences of government systems that prioritised automation, compliance and debt recovery over human oversight, procedural fairness and lived reality through the Robodebt scheme.
Lives were lost.
People experienced overwhelming psychological distress, financial fear, shame and relentless pressure from debt collection processes later found to be unlawful. Many individuals felt trapped within systems that presumed guilt, removed humanity from decision-making and made it almost impossible for vulnerable people to challenge decisions that deeply impacted their lives.
The Royal Commission into the Robodebt Scheme demonstrated what can occur when governments place excessive trust in automated systems while failing to properly consider human complexity, safeguards, accountability and foreseeable harm.
Disabled Australians have every right to question whether those lessons have genuinely been learned.
How certain is the government that the same systemic failures, overreliance on administrative automation and disregard for lived human consequences will not be repeated within the NDIS?
How many disabled people are policymakers prepared to see harmed, retraumatised or pushed into crisis while attempting to implement reforms centred on tighter controls, standardised assessments and administrative eƯiciencies?
These are not theoretical risks.
For disabled people already experiencing burnout, trauma, mental health distress, poverty, housing instability or chronic exclusion, systems that become harder to navigate, less relational and more automated can have devastating consequences.
The NDIS was created because disabled people require individualised supports and human-centred responses. Reform eƯorts that move further away from relational understanding and toward administrative suspicion risk recreating the very harms disability policy should exist to prevent.
The NDIS When It Works
Despite my concerns regarding these reforms, I want to be clear that the NDIS has also transformed our lives in positive ways.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
Without the support of my Occupational Therapist, Psychologist and support workers, I do not believe I would be alive today.
Those supports helped me understand that I was never broken. They helped me recognise how inaccessible environments, unsupported neurodivergence and lifelong masking had impacted my mental health and wellbeing.
With support, I have learned strategies that allow me to regulate more safely, advocate more eƯectively, parent more sustainably and remain connected to my children and community.
The NDIS has also helped my children access supports, connection and opportunities that have improved their wellbeing and participation.
The NDIS, when functioning well, is not simply a funding system. It is a system that can prevent crisis, reduce isolation, strengthen families and help disabled people participate more fully within their communities.
That is why these reforms matter so deeply.
Conclusion
The NDIS was meant to create pathways to participation, dignity and equality.
Many disabled people and families are already spending years fighting to prove they deserve support while carrying increasing levels of unpaid labour, administrative trauma and financial burden.
The disability community is not asking for luxury.
We are asking for systems that recognise:
our humanity,
our expertise,
our cumulative realities,
and the genuine cost of forcing disabled people and carers to survive unsupported.
Sustainability cannot be achieved by transferring the burden onto disabled families already operating beyond capacity.
A sustainable NDIS must recognise that unmet need does not disappear. It simply shifts — into families, schools, hospitals, emergency departments, mental health systems, housing instability and crisis responses.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1189
Policy that ignores belonging ultimately creates systems that manage crisis rather than prevent harm.
If Parliament genuinely wishes to secure the future of the NDIS, it must work with disabled people, not continue designing reforms around assumptions about us without us.
Disabled people should not have to earn belonging by proving they are easy to support.
Yours sincerely,