Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2025
Introduction
I am writing this submission as:
- an autistic woman and NDIS participant
- a parent and primary unpaid carer
- a person living with complex disability and chronic illness
- someone supporting multiple family members with disability
- a person living in regional Tasmania
- someone who has spent years trying to hold together a family inside systems that repeatedly fail disabled people
I have grave concerns about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2025.
From where I stand, these reforms do not create security for disabled people.
They create fear, instability, more surveillance, more reassessment, more gatekeeping and more pressure on families who are already running on fumes.
At the same time, the government keeps talking about “sustainability” while quietly shifting more and more responsibility onto unpaid carers, particularly women, who are already carrying impossible levels of invisible labour behind closed doors.
None of my concerns are theoretical.
This is my life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
These concerns come from decades of trying to navigate education systems, healthcare systems, mental health systems and disability systems that repeatedly failed to recognise complex disability until people were already in crisis.
The NDIS became the final safety net after everything else had already failed my familly.
Now even that safety net feels increasingly hostile, inaccessible and unsafe.
These reforms also risk undermining Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), particularly around autonomy, inclusion, accessibility, supported decision-making and freedom from institutionalisation.
Mainstream systems were already failing disabled people long before the NDIS
There is a growing political narrative that disabled people should rely more heavily on “mainstream supports”, community systems and family rather than funded disability supports.
That narrative completely ignores reality.
Mainstream systems were already failing disabled people long before the NDIS existed.
My daughter was self-harming from around three and a half years old.
By early primary school she was already experiencing severe emotional distress and significant school trauma.
For years we privately funded psychology, occupational therapy and speech pathology while being told she needed more “resilience”, more exposure and more “socialisation”.
We were repeatedly made to feel like we were somehow not trying hard enough.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
Instead of receiving appropriate neuroaffirming support, she experienced punitive responses, emotional invalidation and systems that repeatedly treated distress as defiance.
Over time things escalated into severe school trauma, emotional dysregulation, homelessness, abusive relationships, psychosocial disability and devastating mental health impacts during adolescence and early adulthood.
The same patterns repeated across our family.
Again and again, we encountered systems that interpreted disability as behaviour problems, relied on narrow stereotypes about what disability is supposed to look like, and expected disabled children to adapt to unsafe environments instead of adapting environments to support disabled children.
The NDIS did not create these unmet needs.
The NDIS exposed needs that mainstream systems had already ignored for years.
Now the government is proposing reforms that appear designed to push disabled people back toward the exact same systems that failed us in the first place.
That is terrifying, because many of us already know exactly what happens there.
We already know what it feels like to beg systems to listen while watching the people we love deteriorate in front of us.
We already know what it feels like to be told things are “not severe enough” right up until somebody reaches crisis point.
We already know what happens when disabled people fall through cracks that everybody insists are somebody else’s responsibility.
The proposed reforms fundamentally misunderstand fluctuating and invisible disability.
Submission 1990
My family lives with autism, ADHD, Ehlers-Danlos Syndrome, POTS, ARFID,
fibromyalgia, psychosocial disability, chronic pain and multiple complex co-occurring conditions.
None of these conditions exist neatly in isolation from one another.
Our capacity, function and needs constantly fluctuate.
And that fluctuation is one of the hardest things to explain to people who still think disability only counts if it is visible, constant and easy to measure.
There are days where somebody may technically be able to walk, speak, answer the front door or attend an appointment while still being completely incapable of sustaining participation, regulating emotionally, preparing meals, managing executive functioning, maintaining hygiene, recovering from sensory overload or coping socially.
A person can appear functional for ten minutes and then spend the next two days in collapse.
A person can mask through an interaction and still be drowning internally.
Many disabled people become extremely skilled at appearing “fine” in public because we have spent our entire lives being punished when we are not.
That does not mean we are actually functioning safely or sustainably.
And one of the cruelest realities of disability is that the more you force yourself to appear functional in order to survive, the more likely people are to decide you must not really need support.
People see the five minutes you held yourself together.
They do not see the hours or days of collapse afterwards.
They do not see the shutdowns, pain flares, sensory overload, emotional exhaustion, extended recovery time or the panic.
Submission 1990
The complete depletion that happens behind closed doors after somebody spends every last ounce of energy trying to appear “normal” long enough to get through an interaction safely.
The proposed reforms appear heavily shaped around narrow and simplistic understandings of disability, functioning and independence.
That is dangerous.
Many disabled people do not fit neatly into one diagnostic category.
Our disabilities overlap, compound each other and interact constantly.
Autism impacts communication, executive functioning and sensory processing.
Ehlers-Danlos Syndrome impacts pain, mobility and physical stability.
POTS impacts stamina and autonomic functioning.
Fibromyalgia impacts exhaustion and recovery.
Psychosocial disability impacts regulation, participation and safety.
These conditions do not politely take turns.
They collide with each other every single day.
The legislation appears to move toward narrower impairment definitions and stricter reassessment processes that fail to capture the reality of complex disability.
That places people like my family at enormous risk.
Under-utilisation does not mean lack of need
One of the most dangerous assumptions shaping current NDIS discourse is the idea that under-utilised funding means somebody does not genuinely need support.
Submission 1990
That assumption fundamentally misunderstands autism, trauma and psychosocial disability.
My adult daughter has extremely high relational support needs.
She has experienced trauma, abusive relationships, housing instability and severe emotional dysregulation.
Building safe relationships with workers takes time.
Sometimes months, sometimes years.
She cannot simply “engage more”.
She cannot safely work with just anybody who happens to be available.
At times she has been unable to utilise supports precisely because her disability severity prevents safe engagement.
That does not mean the need disappears, it means the disability remains significant.
Too often, the system treats low utilisation as evidence against disability instead of recognising that inability to engage can itself be part of disability.
This is particularly dangerous for autistic women, people with psychosocial disability and people with trauma histories.
People who have already been harmed by systems do not automatically feel safe just because support technically exists on paper.
Sometimes the disability itself is the barrier to accessing the support.
That reality does not seem properly understood within these reforms.
Women are already carrying unsustainable levels of unpaid care.
Submission 1990
The proposed expansion of “natural supports” and broader interpretations of parental responsibility will disproportionately harm women.
Women are already carrying the overwhelming majority of unpaid disability care in this country, and many of us are barely surviving it now.
I provide extensive unpaid support to my adult daughter including:
- emotional regulation support
- crisis intervention
- executive functioning support
- meal coordination
- financial administration
- advocacy
- transport coordination
- appointment management
- medication prompting
- communication support
- safeguarding support
- housing support
This is not “ordinary parenting”.
This is disability support work.
It is unpaid disability support work being performed behind closed doors by exhausted women who are expected to just keep absorbing more and more because the system assumes we will.
The government increasingly frames this labour as “natural”.
There is nothing natural about living in a constant state of hypervigilance, exhaustion and crisis management while trying to keep multiple disabled people safe and functioning.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
There is nothing natural about women sacrificing their own health, careers, financial stability and futures because formal systems are failing.
And the reality is, women are paying for this with our own bodies.
I also live with autism, Ehlers-Danlos Syndrome, POTS, fibromyalgia and mast cell activation-related symptoms.
There are days where I can barely stand up long enough to get through basic tasks because of pain, exhaustion and autonomic dysfunction.
But there is no room to properly fall apart when other people depend on you.
So you push through.
You ignore your own body.
You postpone your own medical care.
You cancel your own appointments.
You stop resting properly.
You stop recovering properly.
You function in survival mode for so long that eventually your nervous system forgets what safety even feels like.
You keep coordinating appointments, transport, food, crises, housing issues, emotional regulation, safeguarding and endless administration because if you stop, everything around you starts collapsing.
At this point I am not simply “supporting” the system.
Like many carers, I am holding it together.
And I do not think governments fully understand how much the NDIS already depends on invisible unpaid labour from women behind closed doors.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
Without unpaid carers performing extraordinary levels of invisible labour every single day, many disabled people would immediately fall into crisis.
These reforms do not reduce care needs.
They simply shift even more of the burden onto women and families who are already drowning.
Disability has consumed our family financially.
The financial reality of disability is constantly ignored in discussions around “sustainability”.
My family spent years privately funding therapies and supports before accessing the NDIS.
We exhausted savings paying for psychology, occupational therapy, speech pathology and disability-related costs.
At the same time, my husband experienced a major cardiac event requiring surgery and prolonged recovery, which severely impacted our family financially while our disability support needs were escalating.
The complexity of disability within our family has also significantly limited my ability to maintain sustainable employment.
Like many carers, I have had to structure my life around flexibility, crisis management and survival rather than career progression or financial security.
There is this constant public narrative that carers should simply “work more”.
What people do not understand is that many of us are already working constantly.
We are just not being paid for most of it.
Submission 1990
We have had to withdraw from our own medical care and supports because we simply cannot afford to sustain everything simultaneously.
That is the reality for many disability families.
Disability is expensive.
Caregiving is expensive.
System navigation is expensive.
And there are countless hidden costs that governments never seem to account for.
The lost income.
The interrupted careers.
The burnout.
The specialist appointments.
The travel.
The therapies.
The medications.
The adaptive supports.
The unpaid hours spent on hold, filling out forms, writing reports, attending meetings and trying to stop vulnerable people from falling through cracks.
These reforms will not reduce those pressures.
They will simply shift even more responsibility back onto families already operating beyond capacity.
Submission 1990
The NDIS already relies heavily on unpaid labour from families
The current system already depends heavily on unpaid administrative, emotional and practical labour from participants and carers.
In practice, I function as:
- a case manager
- advocate
- support coordinator
- crisis worker
- transport coordinator
- safeguarding monitor
- financial administrator
- disability navigator
- emotional regulation support person
This work is unpaid.
Much of it is invisible.
And it is relentless.
Families are expected to coordinate fragmented systems while constantly proving and reproving disability through exhausting bureaucratic processes.
We are expected to become experts in legislation, funding categories, evidence requirements, review processes and safeguarding because the consequences of getting it wrong are catastrophic.
One wrong decision can destabilise housing.
Safety.
Mental health.
Nutrition.
Submission 1990
Participation.
Entire lives.
The system already leans heavily on unpaid labour from carers to keep functioning.
These reforms will intensify those demands even further.
Our family is no longer living. We are surviving.
The emotional and physical toll of surviving these systems is immense.
Our family is not thriving.
We are surviving.
At some point you realise months have gone by and your entire life has become
paperwork, appointments, crises, recovery, phone calls and trying to stop vulnerable
people from falling through cracks.
Everything becomes about survival.
Trying to get through the next appointment.
The next review.
The next crisis.
The next phone call.
The next piece of paperwork.
The next fight to keep supports in place.
There is very little room left for ordinary life.
Very little room for joy, recreation, connection or recovery.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
At one point I realised we no longer went to parks, beaches, movies or family outings because all our energy was being consumed by disability, exhaustion and constant system navigation.
The exhaustion builds year after year until survival becomes the only thing left.
And underneath all of it sits fear.
Fear that supports will disappear.
Fear that vulnerable people will be left unsafe.
Fear that families already stretched beyond capacity will simply collapse.
There is never genuine safety because supports can disappear at any review.
There is never proper recovery because every ounce of energy goes into keeping everybody afloat.
Families are already functioning beyond what is sustainable.
Women are already functioning beyond what is sustainable.
Disabled people are already functioning beyond what is sustainable.
People are already breaking.
These reforms risk pushing many people completely past breaking point.
Fear now shapes every interaction with the system
Participants no longer engage with the NDIS from a position of safety or trust.
Many of us engage from fear.
Fear of reassessment.
Submission 1990
Fear of losing supports.
Fear of requesting help.
Fear of saying the wrong thing.
Fear of being misunderstood.
Fear of being labelled fraudulent.
Fear of appearing “too capable”.
Fear of not appearing capable enough.
You start analysing every sentence that comes out of your mouth.
You overthink every email.
You replay conversations afterwards wondering whether you sounded “too functional”.
Because if you sound too articulate, too calm, too organised or too informed, somebody may decide you must not really need support.
But if you become distressed, overwhelmed, emotional or dysregulated, that can also be used against you.
There is no safe way to exist inside that kind of system.
Participants learn very quickly that supports can disappear at any moment.
So people mask.
People minimise.
People stop asking for things they genuinely need because they are terrified of triggering reviews or reassessments.
Many participants no longer experience the NDIA as supportive.
Submission 1990
They experience it as something they have to survive.
And that fear is not irrational.
People have watched supports disappear overnight.
People have watched years of evidence dismissed.
People have watched planners make decisions about complex disabilities they clearly do not properly understand.
People have watched the public conversation around disability shift toward suspicion, surveillance and fraud rhetoric.
That fear has been learned through experience.
The current reassessment culture is already psychologically harmful.
My family has repeatedly experienced:
- arbitrary removal of supports
- repeated reassessment of already accepted disabilities
- inaccessible planning processes
- contradictory decisions
- repeated evidentiary demands
- planner intimidation
- emotionally distressing reviews
- fear-based engagement with the NDIA
We have repeatedly been forced through reviews, S100 reconsiderations and tribunal processes simply to retain supports that were already accepted as reasonable and necessary.
Participants should not have to keep proving permanent disability over and over again.
Submission 1990
Especially when the process itself is causing harm.
Repeated reassessment is not emotionally neutral.
People do not walk away from these processes unaffected.
It creates humiliation, panic, exhaustion, hypervigilance and retraumatisation.
Participants learn very quickly that they are never truly safe inside the system.
That their supports are never secure.
That at any moment they may be forced to justify their existence all over again to strangers who hold enormous power over their lives.
The fear of reassessment has become so severe that many participants are now afraid to request legitimate supports, therapies or assistive technology because they fear triggering reviews and losing existing funding.
People are scared to ask for help inside a system that is supposed to support them.
That should alarm everybody.
Planning processes are already inaccessible and traumatising
The current planning process already contains enormous power imbalances.
I have repeatedly requested communication via email because of disability-related accessibility needs.
Those requests have frequently been ignored.
I have received unexpected phone calls from planners that escalated into highly distressing conversations despite clearly stating I did not consent to a planning meeting at that time.
Submission 1990
For many autistic people and people with psychosocial disability, those calls do not feel like simple administrative conversations.
They feel like interrogations where every answer could affect your survival.
You are trying to regulate yourself while simultaneously being asked deeply personal questions by somebody who holds enormous power over your supports and safety.
You are trying not to panic.
Trying not to cry.
Trying not to sound “too emotional”.
Trying not to sound “too capable”.
Trying to process complex questions without enough time, preparation or support.
Participants become overwhelmed, dysregulated and distressed while being questioned about deeply personal matters by people who often do not understand the realities of complex disability.
And when people become distressed during these interactions, that distress can then be interpreted negatively by decision-makers.
The proposed reforms appear to expand NDIA powers without properly addressing these existing accessibility failures.
That is deeply concerning.
Removal of low-cost preventative supports creates larger crises
The NDIS repeatedly removes low-cost supports that are actively preventing much larger crises.
Submission 1990
One clear example within my family involved meal supports connected to my daughter’s autism and ARFID-related eating difficulties.
The supports were working.
They reduced crisis.
They improved nutrition.
They supported stability and independence.
BUT they were removed anyway.
The rationale appeared heavily focused on whether the supports were “capacity building” and whether they were creating permanent independence.
That approach fundamentally misunderstands disability.
Not every support exists to cure disability.
Not every support exists to produce total independence.
Some supports exist because they maintain safety, regulation, nutrition, health and sustainability.
Some supports are harm reduction.
Some supports are the only thing standing between stability and complete collapse.
Some disabilities are lifelong.
Without those supports, we were forced into far more labour-intensive arrangements involving external meal preparation, family coordination and transport of food.
That did not reduce burden.
It simply shifted the burden onto family members.
When preventative supports disappear, people deteriorate.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
They lose housing.
They experience mental health crises.
They become isolated.
They end up in hospitals and emergency systems.
They become increasingly vulnerable to unsafe providers, institutional dependency and segregated models of care.
These reforms risk accelerating exactly those outcomes.
Relational supports matter
Many autistic people and people with psychosocial disability cannot simply work with whoever happens to be available.
Relational safety matters.
Trust matters.
Continuity matters.
Building safe support relationships can take months or years, especially for people with trauma histories.
Some of the safest and most effective supports we have ever received came through smaller or independent providers who understood neurodivergence, communicated respectfully and provided flexibility and continuity.
By contrast, some of the most harmful experiences we have had occurred through large registered providers.
Registration status does not automatically equal safety.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
Some providers understand compliance processes while still delivering deeply unsafe or dehumanising care.
Meanwhile, some of the most genuinely supportive people are being pushed out by increasingly rigid systems that prioritise bureaucracy over relationships.
These reforms risk pushing participants toward rigid, compliance-driven systems that prioritise paperwork over genuine human support.
And for many disabled people, those relationships are the difference between participation and complete withdrawal from support altogether.
Regional participants face additional barriers
Living in Tasmania creates additional barriers to accessing appropriate supports.
There are major workforce shortages, limited specialist knowledge, and long waitlists for clinicians with expertise in complex disability.
Provider choice is limited.
Transport barriers are significant.
Changing providers is often extremely difficult because there may simply be nobody else available.
I have struggled to find occupational therapists with adequate understanding of Ehlers-Danlos Syndrome, POTS and fatigue-related disability to complete assessments for mobility supports.
Regional participants are constantly expected to somehow “exercise choice and control” within systems where genuine choice barely exists.
People in regional areas are often forced to accept unsuitable supports because there are no alternatives.
Submission 1990
These reforms do not appear to adequately account for those realities.
Anti-fraud rhetoric is already causing harm
The government’s repeated focus on “fraud”, “rorting” and excessive spending has already created hostility toward disabled people in the broader community.
Disabled people are increasingly treated as suspicious simply for existing in public.
I was accused of fraud by a service provider because I could walk to my front door and because my husband happened to be home when they attended the property.
That is the environment disabled people are now living in.
People believe they can judge disability based on appearance alone.
They believe they can determine who is “really disabled”.
Meanwhile many disabled people become extremely skilled at masking distress, masking pain and masking functional impairment because we have spent our entire lives trying to survive systems that punish vulnerability.
A person may appear outwardly functional while privately collapsing.
A person may smile through an interaction and then spend the next two days in bed recovering.
A person may force themselves through appointments while falling apart internally because they know they will not be believed otherwise.
Disabled people are increasingly being watched, judged and socially surveilled by strangers who have absorbed the message that we are somehow suspect.
That culture is dangerous.
It impacts dignity.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1990
It impacts safety.
It impacts people’s willingness to seek support at all.
The rhetoric surrounding these reforms is making it worse.
Conclusion
Disabled people are not failing the system.
The system is failing disabled people.
The NDIS absolutely requires improvement, accountability and reform.
But these proposed changes do not address the actual causes of systemic failure.
Instead, they risk:
- increasing fear and insecurity for participants
- intensifying reassessment and surveillance
- narrowing recognition of disability
- undermining participant choice and control
- shifting more labour onto women and families
- excluding people with fluctuating and invisible disability
- worsening barriers for regional participants
- increasing institutional and crisis-driven outcomes
I urge the Committee to:
- reject reforms that narrow recognition of disability and reduce complex people into narrow diagnostic categories that fail to reflect how disability is actually experienced in daily life
- protect recognition of fluctuating and invisible disability, including the reality that people can appear functional in short interactions while still being significantly disabled and unsafe without support
Submission 1990
limit reassessment powers and stop forcing people with permanent disability to repeatedly prove the same impairments through exhausting and retraumatising processes
reduce repeated evidentiary demands that place enormous emotional, financial and administrative burdens on disabled people and families already operating beyond capacity
protect genuine participant choice and control, including the ability to choose supports and workers based on trust, relational safety and individual needs
protect access to trusted non-registered supports and recognise that registration status alone does not guarantee safe, effective or neuroaffirming support
implement genuinely trauma-informed planning and review processes that recognise the psychological harm many participants already experience when engaging with the NDIA
improve communication accessibility, including respecting requests for written communication and reducing reliance on inaccessible phone-based planning processes
reject excessive reliance on “natural supports”, particularly where this language is being used to shift more unpaid labour and responsibility onto women, carers and already exhausted families
ensure genuine co-design with disabled people, carers and families, including people with lived experience of complex, fluctuating and invisible disability
protect participants’ rights to internal reviews, external appeals and tribunal processes, including access to procedural fairness and independent oversight of NDIA decision-making
strengthen safeguarding and accountability within the NDIA to ensure decisions are being made in accordance with legislation, evidence and participant rights, rather than internal policies, unofficial practices or cost-cutting pressures Disabled people are not asking for luxury.
We are asking to survive.
Submission 1990
We are asking for safety.
We are asking for systems that do not retraumatise, disbelieve and exhaust us simply for being disabled.
Because right now, many disabled people and carers are already holding together a system that depends heavily on invisible unpaid labour.
Families are exhausted.
Women are exhausted.
Disabled people are exhausted.
People are already breaking.
And instead of recognising that reality, these reforms threaten to push even more people into fear, crisis, institutionalisation and collapse.
These reforms risk formalising many of the exact harms the NDIS was originally created to prevent.