Submission 91
Submission Regarding Proposed NDIS
Reforms and the Impact on High
Complexity Multi-Participant Families
Submitted by: Mother, grandmother, primary carer, homeschool parent, self-manager of seven NDIS plans, lived-experience disability advocate and support coordinator.
Introduction
To the Members of Parliament and decision-makers considering reforms to the National
Disability Insurance Scheme,
My name is .
I am writing this submission not as a policy expert removed from reality, but as someone living the reality of disability every single day.
I am the primary carer in a household of eight people. Seven members of my household are NDIS participants — my husband and six children, including my grandson, for whom I hold parental responsibility.
I self-manage all seven plans.
I coordinate therapies, supports, schedules, workers, invoices, budgets, reports, reviews, homeschool planning, appointments, medications, behavioural supports, meal planning, transport, crises and day-to-day functioning while also navigating my own health conditions.
My husband also lives with disability.
We are not an exception.
We are the type of family the NDIS was created to support.
Yet I am deeply concerned that proposed NDIS reforms are being designed without fully understanding what disability looks like inside a high-complexity family home.
Much of the current language surrounding reform speaks about sustainability, efficiencies, cost reduction, tighter eligibility, foundational supports and standardised functional capacity.
But disability is not standardised.
Families are not standardised.
And when disability exists across an entire family system, support needs cannot be understood by assessing one individual in isolation.
Submission 91
I fear the unintended consequences of these reforms will not simply reduce services.
They will destabilise already vulnerable families.
And families like mine will not quietly “adjust.”
We will break.
Our Household Reality: Disability Does Not
Exist in Isolation
Our household includes six neurodivergent children and a husband with disability.
All my children have autism with significant functional impacts and PDA (Pathological Demand Avoidance) presentations.
No two children present the same.
This is one of the most important things policy makers must understand.
Autism is not one-size-fits-all.
Within the same household, disability can look completely different from child to child.
One child may become overwhelmed and withdraw.
Another may abscond.
Another may become dysregulated and aggressive.
Another may refuse hygiene, food, schoolwork or transitions.
Another may mask all day before collapsing emotionally at home.
What works for one child can completely fail another.
There is no “one routine.”
No universal behavioural strategy.
No simple parenting framework.
Every day requires constant adaptation, emotional regulation, supervision, planning, negotiation and co-regulation.
Our home functions because of supports.
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Without supports, we move from functioning to survival.
A Day in Our Home
When people think about disability funding, they often imagine appointments.
Therapy.
Programs.
A worker taking someone to an activity.
That is not what disability looks like in our home.
Disability begins before sunrise.
Our grandson, who lives with us full time and has autism, often wakes extremely early.
Sleep is inconsistent.
It is not unusual for him to climb into our bed around 3am and still be awake by 5am.
This means the day often starts after very little sleep.
By the time the rest of the household begins waking, the adults are already exhausted.
My husband lives with autism and a degenerative back condition causing significant pain and impacting cognition, planning and decision-making.
I live with chronic pain conditions including fibromyalgia.
Many mornings, one or both of us are already functioning through pain, fatigue and sensory overwhelm before the day has properly begun.
Support workers commonly begin at 7am because mornings are one of the highest-risk, highest-demand times of the day.
Their role is not “babysitting.”
Their role is disability support.
Morning routines may include:
supporting breakfast preparation regulating emotional overwhelm assisting transitions prompting medication
Submission 91
prompting or assisting showering, teeth brushing and hygiene reducing conflict between siblings co-regulating meltdowns helping children transition into learning or daily routines preventing escalation and absconding behaviours maintaining safety while multiple competing needs occur simultaneously
On paper, “prompting morning routine” sounds simple.
In reality, it can take many hours.
One child may refuse clothes because of sensory distress.
Another may become dysregulated over breakfast choices.
Another may react to a sibling and escalate into conflict.
Another may become emotionally overwhelmed and shut down.
Another may resist hygiene because demands trigger distress.
A parent may simultaneously be trying to administer medication, organise appointments, prepare meals, manage behaviours, coordinate transport and respond to competing emotional needs.
And no two days look the same.
Some mornings go smoothly.
Many do not.
Supports do not replace parenting.
They make parenting possible.
Without this practical, hands-on support, children’s needs do not get met consistently and the family unit becomes overwhelmed.
Burnout increases.
Stress increases.
Conflict increases.
Functioning decreases.
Submission 91
Disability Is More Than a Diagnosis
One of my sons lives with autism and requires management of a MACE (Malone Antegrade Continence Enema) due to lifelong bowel dysfunction.
However, this cannot simply be understood as a “medical issue.”
His autism profoundly affects how the condition presents and is managed.
He does not experience body cues or pain in typical ways.
He can become significantly impacted before recognising something is wrong.
When he becomes severely backed up, behaviours escalate dramatically.
This may present as:
increased aggression emotional dysregulation heightened meltdowns absconding behaviours increased defiance distress directed at siblings escalating behavioural risk within the home
What might look externally like “behavioural problems” is often an unmet disability-related need.
The management process itself is intensive.
His father must administer medication slowly via syringe through his MACE, which can take up to 45 minutes.
He then requires supervision while sitting on the toilet for approximately an hour.
This process alone significantly affects daily family functioning.
And this is one child.
In a home with multiple children requiring supervision, emotional regulation and support, one high-needs task can immediately create competing risks elsewhere in the home.
Who supports the child in distress?
Who supervises siblings?
Who manages absconding?
Who drives another child to therapy?
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Who cooks dinner?
Who helps regulate another child?
These are the realities policy rarely sees.
Autism and Identity: Why Disability
Cannot Be Separated into Silos
My eldest child, aged 17, is autistic and transgender.
However, this experience cannot simply be categorised under “mental health” or pushed into a generic identity framework.
Autism changes how identity, emotional regulation, social communication, sensory processing, anxiety and belonging are experienced.
He does not view himself as “transitioning.”
He sees himself as male.
At the same time, autism affects his ability to navigate social connection, emotional understanding and community participation.
He struggles to understand social dynamics.
He experiences significant anxiety.
He finds community access overwhelming.
He struggles to make and maintain friendships.
He isolates.
Without trusted support workers, his world becomes very small.
He often forms safer, more meaningful connections with consistent support workers because predictability, trust and relational safety are essential.
He dreams of future independence and loves cooking and baking.
We structure homeschool learning around these interests to build real-world skills and confidence.
Yet he struggles to leave the house independently, access community spaces or tolerate uncertainty.
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Support workers are not optional.
They are how independence is built.
Without support, isolation grows.
Anxiety worsens.
Skills regress.
Milestones such as community participation, employment readiness and even learning to drive become harder to achieve.
Parliamentary Submission — Part 2
Homeschooling Is Not a Lifestyle Choice —
It Is a Disability Accommodation
One of the greatest misunderstandings families like mine face is the assumption that homeschooling is a preference.
For our family, homeschooling is a disability accommodation.
Our children previously attempted mainstream education.
It did not work.
We experienced repeated school refusal, emotional dysregulation, absconding, severe anxiety, behavioural escalation, overwhelm, masking and emotional collapse.
At times, I was repeatedly called to schools because children were overwhelmed, dysregulated, flipping tables, absconding or unable to cope with demands.
In other cases, children masked heavily throughout the day and released distress once home, where they felt emotionally safe.
What followed was often hours of emotional fallout.
The period after school became survival.
Multiple dysregulated children, competing sensory needs, emotional overwhelm, aggression between siblings, exhaustion and parents attempting to co-regulate everyone at once.
School did not reduce pressure.
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It amplified it.
Homeschooling changed this.
Our children began to thrive because learning could finally be adapted to disability.
With PDA presentations, learning cannot be driven through pressure, forced compliance or rigid systems.
Interest-based learning works.
Hands-on learning works.
Relationship-based learning works.
Flexibility works.
Children retain information better when learning connects to interests and regulation.
We teach through cooking, sport, horses, gaming, baking, community activities, real-world mathematics, budgeting, communication, life skills and practical problem-solving.
This is not “less education.”
It is education adapted for disability.
Yet homeschooling within a high-complexity neurodivergent household is intensive.
There are six neurodivergent children requiring varying levels of prompting, regulation, supervision, encouragement and emotional support.
No single parent can realistically provide uninterrupted one-to-one support to six autistic children simultaneously.
This is why support workers are critical during school hours.
They are not replacing teachers.
They are helping children regulate, stay engaged, transition, remain emotionally safe and access learning.
Without support, the child who requires co-regulation misses learning.
The child who absconds becomes unsafe.
The child overwhelmed by sensory input shuts down.
The child struggling with emotional regulation escalates.
And the parent becomes spread impossibly thin.
Submission 91
Policy must recognise that in complex disability households, educational access is inseparable from regulation support.
Community Participation Is Not Recreation
— It Is Skill Building, Regulation and Early
Intervention
I am deeply concerned by language suggesting community participation may become more restricted or reframed as non-essential.
For my children, community participation is disability support.
It is intervention.
It is prevention.
It is skill building.
It is how future independence is created.
Without it, isolation increases.
For example, one of my daughters loves horses.
Horse riding and horse care regulate her nervous system in ways little else can.
When she misses this support, behavioural changes become obvious.
Emotional regulation worsens.
Anxiety increases.
Distress rises.
This is not recreation.
Her support worker is also experienced in horses and helps her:
regulate emotionally build confidence learn responsibility communicate tolerate transitions develop vocational interests learn practical skills that may one day support employment
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She is learning how to care for horses, how to interact safely, how to follow routines, how to communicate and how to work toward future independence.
This is real-world disability support.
It is building a future.
Removing this support would not create independence.
It would reduce it.
Likewise, sport and community activities are not simply hobbies.
For autistic children, sport teaches:
emotional regulation social communication tolerance of unpredictability teamwork resilience waiting turns coping with winning and losing following instructions community confidence
Without support workers, many of my children withdraw.
They stop participating.
They become overwhelmed.
They isolate.
Early intervention through supported community participation prevents future dependency.
It prevents crisis.
It prevents social isolation.
It prevents disengagement.
And, critically, it reduces future contact with overburdened mental health, emergency and justice systems.
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Safety Risks: What Happens in Real Life
Policy discussions often treat supports as optional extras.
In reality, they are risk mitigation.
There are times our family attempts to access the community together and things do not go to plan.
Crowds become overwhelming.
Sensory overload occurs.
Demands become too much.
Children dysregulate.
Some abscond.
As a parent, I am then forced into impossible decisions.
If one child runs:
Who do I follow?
Who stays with the others?
If two children abscond at once:
Who do I protect first?
What happens to the younger children?
Who ensures safety?
There are moments in disability parenting where you physically cannot be in more than one place at once.
Support workers are what make safety possible.
The alternative is increased risk.
Risk of wandering.
Risk of injury.
Risk of emotional escalation.
Risk of police involvement.
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Risk of crisis.
When supports are removed, these risks do not disappear.
They transfer to parents already stretched beyond capacity.
Appointments, Therapy and Why Families
Cannot “Just Manage”
Therapy sounds simple in policy language.
Attend appointment.
Receive support.
Go home.
The reality for high-complexity families is very different.
Appointments frequently overlap.
Children attend different providers across multiple locations.
Parents coordinate transport, medications, emotional regulation and supervision.
One child may need to attend therapy while another cannot tolerate waiting rooms.
One child may dysregulate in the car.
Another may refuse transitions.
Another may abscond.
Another may require close supervision for safety.
There are days where one parent attends one appointment, while another child attends elsewhere, while support workers supervise siblings or help transport another participant.
Without support workers, appointments become practically impossible.
Families begin cancelling.
Therapy attendance drops.
Intervention is delayed.
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Parents stop attending because the logistics become unmanageable.
The outcome is not savings.
The outcome is deterioration.
Mealtimes, Fatigue and Why Informal
Supports Cannot Be Infinite
Evenings are another high-demand period.
Meal preparation is not straightforward.
My husband often cooks, but chronic pain and disability mean this is not always possible.
Support workers frequently assist him to prepare meals while another worker or parent supports children with regulation, hygiene or transitions.
Bathing and hygiene are rarely simple.
Prompting children to shower or brush teeth can trigger distress because demands themselves are overwhelming.
Some children need prompting.
Some need emotional regulation.
Some require hands-on assistance.
Some refuse entirely.
Bedtime can continue for hours.
Children wake repeatedly.
Some remain dysregulated until late at night.
Parents remain “on” long after support shifts finish.
By midnight, parents are exhausted, in pain and preparing to start again after limited sleep.
The assumption that parents can simply absorb more responsibility ignores the reality of carer burnout.
Informal supports are not infinite.
Submission 91
Parents are human.
Parents have health conditions.
Parents break.
And when parents break, systems become far more expensive.
Prevention Costs Less Than Crisis
Without supports, families do not suddenly become more independent.
What happens instead is predictable.
Parents burn out.
Relationships collapse.
Children disengage from therapy.
Community participation stops.
Mental health worsens.
Emergency systems become involved.
Families require crisis responses.
Children become more vulnerable to hospitalisation, justice involvement, child protection involvement or long-term dependence.
The question Parliament must ask is not:
“How much can we reduce?”
It is:
“What happens when support disappears?”
Because in homes like mine, support is not excess.
Support is what keeps the family functioning.
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Parliamentary Submission — Part 3
What Happens When Systems Fail: My
Former Foster Daughter and Why Early
Support Matters
I understand what happens when systems fail because I have lived it.
For many years I was a foster carer.
One young person I cared for, my former foster daughter, lived with significant vulnerabilities including intellectual disability and complex support needs.
Despite clear indicators that she required consistent intervention, stability and long-term disability-informed support, the systems around her failed to adequately respond.
I eventually had to make the heartbreaking decision to relinquish care.
This was not because I stopped caring.
It was because the level of complexity, combined with inadequate supports and system failures, became unsustainable.
What followed has shaped how I see disability, prevention and support forever.
Without appropriate disability-informed intervention and continuity of support, vulnerability increased.
Her circumstances deteriorated significantly.
She experienced exploitation and trauma while still a child.
She became pregnant at fifteen.
The systems that were meant to safeguard and support her did not prevent harm.
Today, as a young adult, she continues to experience significant challenges engaging with systems due to disability-related barriers.
She struggles with engagement, trust, communication and navigating services.
Despite clear support needs, accessing and maintaining disability supports remains difficult.
Submission 91
The systems around her still struggle to meet her where she is.
This matters because it demonstrates something policymakers must understand:
When supports are missing, vulnerability does not disappear.
Need does not disappear.
Risk does not disappear.
It compounds.
And the long-term cost becomes significantly greater.
Why My Grandson Lives with Me — And
What Early Intervention Looks Like When
It Works
Today, I care for her son full time.
He is four years old.
He also has autism and an NDIS plan.
I hold parental responsibility for him because his mother, overwhelmed by disability and systemic failure, made the incredibly difficult decision to entrust his care to me to keep him safe and out of systems that had already failed her.
This child deserves a different outcome.
And because of the NDIS, early intervention and hands-on supports, he has one.
He accesses therapies.
He accesses support workers.
He receives regulation support.
He is learning emotional safety, communication and structure.
I understand the system.
I know how to advocate.
I know how to navigate supports.
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I know how to build teams around children.
But what happens to families who do not?
What happens if these supports are removed or reduced?
What happens if early intervention becomes inaccessible?
What happens when parents are too exhausted to navigate complex systems?
What happens when mainstream services say:
“You are too complex.”
Because that is not hypothetical.
That is lived experience.
Without meaningful supports, children fall through cracks.
Parents burn out.
Risk compounds.
And the long-term price paid by society becomes far greater.
The NDIS Did Not Create Dependence — It
Created Capacity
The NDIS changed our lives.
Not because it removed disability.
But because it gave us breathing room.
Before supports, our household existed in survival mode.
Every crisis sat solely on family shoulders.
Every meltdown.
Every appointment.
Every behaviour.
Every therapy.
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Every school issue.
Every safety concern.
Every transport problem.
Every emotional breakdown.
Every piece of paperwork.
Every moment of exhaustion.
The NDIS did not “fix” our family.
What it did was create capacity.
Capacity to parent.
Capacity to regulate.
Capacity to breathe.
Capacity to support our children in meaningful ways.
Capacity to think beyond surviving the next crisis.
It allowed us to create structure.
To build routines.
To stabilise.
To teach skills.
To help our children participate in society.
To imagine futures.
The greatest misunderstanding about disability support is the assumption that help creates dependence.
In our home, support creates independence.
The more regulated our children become, the more skills they learn.
The less isolated they are.
The more they access community.
The more they develop confidence.
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The more capable they become.
The goal is not lifelong dependence.
The goal is future capacity.
And that future capacity is built now.
Not later.
My Lived Experience Led Me to Become a
Support Coordinator
Because of my lived experience navigating disability, I eventually became a support coordinator.
I did this because I saw firsthand how overwhelmed families were.
Families receiving plans with no idea how to use them.
Families burnt out, traumatised and exhausted.
Families handed large budgets and confusing documents while being expected to somehow navigate a system they did not understand.
The reality is that when many participants receive a plan, they are already overwhelmed.
Implementation meetings can involve enormous amounts of information.
Funding categories.
Line items.
plan dates.
Capacity Building.
Core.
Consumables.
Reports.
Reviews.
Provider recommendations.
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Budgeting.
Service agreements.
Risk.
Consent.
Future evidence gathering.
Most families leave overwhelmed.
Not because they do not care.
Because they are exhausted.
Because disability already consumes every ounce of cognitive load.
Support coordination bridges this gap.
What Support Coordinators Actually Do
There appears to be a growing misunderstanding of what support coordinators do and why they matter.
We are not administrators.
We are not optional extras.
And we are not interchangeable with LACs or plan managers.
A good support coordinator helps families:
understand confusing plans interpret funding categories break budgets down into realistic weekly or quarterly spending prevent overspending or underspending source safe and suitable providers coordinate therapies align reports and evidence manage crises support reviews prepare evidence for reassessments problem solve when supports collapse coordinate stakeholder meetings advocate when systems fail teach participants and families how to self-manage effectively
Submission 91
help families understand what supports are reasonable, sustainable and achievable
Support coordination prevents plan breakdown.
It prevents misuse.
It prevents crisis.
It creates understanding.
Why LACs and Plan Managers Cannot
Replace Support Coordination
In my lived experience, LACs and support coordinators perform entirely different roles.
I rarely hear from LACs outside of plan reviews.
They do not walk alongside families through day-to-day complexity.
They do not coordinate providers.
They do not monitor household sustainability.
They do not create realistic budget systems.
They do not help families manage competing disability needs inside a household.
Plan managers serve another important function, but they are not support coordinators either.
They process invoices.
They tell you what funding remains.
But families are often left asking:
“What does this actually mean?”
“Can we afford this?”
“Will this last?”
“How do we stop overspending?”
“What happens if we increase supports?”
“How do we prioritise funding?”
Submission 91
Most plan managers do not break plans down into meaningful, practical budgeting systems for families.
The burden falls back onto participants already overwhelmed by disability.
Without support coordination, many families drown in complexity.
The Risk of Reducing or Commissioning
Support Coordination
I am deeply concerned about proposals that would reduce, restrict or commission support coordination in ways that reduce flexibility.
Support coordination should not be reduced.
It should be strengthened.
If government is concerned about sustainability, then invest in the role that prevents crisis.
Fund support coordinators to:
create budgeting systems educate participants support implementation reduce waste monitor sustainability coordinate providers gather evidence early prevent unnecessary reassessments stabilise families
Support coordination is prevention work.
And prevention costs less than crisis.
Parliamentary Submission — Part 4 (Recommendations &
Closing)
The Cost of Getting This Wrong
I understand government must think about sustainability.
Submission 91
I understand public money must be spent responsibly.
I understand systems must be accountable.
But sustainability cannot simply mean spending less.
It must mean spending wisely.
The question should not be:
“How do we reduce cost?”
The question should be:
“What prevents higher costs later?”
Because if supports are reduced for families like mine, the cost does not disappear.
It shifts.
And often, it multiplies.
When disability-related supports are not available, the pressure moves to:
emergency departments mental health systems child protection systems foster and residential care systems hospital admissions crisis accommodation services youth justice systems school refusal and disengagement pathways family violence and family breakdown responses Centrelink and long-term welfare dependency carer mental health systems GP and specialist services already under strain
The reality is this:
A regulated child costs less than a child in crisis.
A supported family costs less than a broken family.
A support worker helping a young person learn community participation costs less than future justice involvement, hospitalisation or lifelong isolation.
An overwhelmed parent given practical support costs less than parental burnout, family collapse or state intervention.
The NDIS should not be measured purely in annual expenditure.
Submission 91
It should be measured by what it prevents.
Because prevention is cheaper than repair.
Disability Exists Within Families, Not in
Isolation
One of the greatest concerns I have about proposed reforms is that they appear increasingly focused on individuals in isolation.
But disability does not live in isolation.
Disability lives in families.
In homes.
In kitchens.
In waiting rooms.
In sleepless nights.
In exhausted parents trying to split themselves across multiple competing needs.
A child’s functional capacity cannot be understood without understanding:
who regulates them who supervises them who manages safety risks who transports them who supports appointments who absorbs meltdowns who advocates in systems who provides emotional regulation who manages medications and therapies who carries the invisible mental load
The answer is usually families.
And families are not infinitely resourced.
The sustainability of informal supports should not be assumed.
It should be protected.
Submission 91
Recommendations to Parliament
I respectfully ask Parliament to consider the following recommendations when reviewing and implementing NDIS reforms.
- Recognise High-Complexity Multi-Participant Families Assessment systems must acknowledge cumulative disability load in households where multiple participants live together.
Planning should recognise:
competing care demands supervision requirements cumulative behavioural complexity impacts on informal supports logistical burden family-system sustainability
Families with multiple participants cannot reasonably be assessed through isolated, individual-only frameworks.
- Preserve Flexible Access to Independent Sole Trader
Support Workers
For many autistic participants, especially those with PDA presentations, trust, predictability and relationship-based support are essential.
Independent support workers often provide:
consistency relational safety flexibility lower overall cost sustainable shared supports within complex households
Provider models may not reflect the realities of high-complexity homes where multiple participants require support simultaneously.
Forcing families into inflexible staffing arrangements risks poorer outcomes, distress and disengagement.
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- Protect Community Participation Funding Community participation should be recognised as:
functional capacity building regulation support communication development vocational preparation social skill development emotional regulation support independence building
For neurodivergent children and young people, community participation is not recreational spending.
It is therapy in real life.
It is prevention.
It is early intervention.
- Ensure Homeschooling Families Are Not Disadvantaged For some families, homeschooling is a disability accommodation.
Supports provided during school hours should recognise:
emotional regulation needs supervision demands disability-related learning barriers capacity building through real-world experiences life-skills education community-based learning
Supports should not be excluded simply because learning occurs outside traditional school settings.
- Recognise Autism-Specific Support Needs Beyond
Generic Mental Health Frameworks
Autism affects:
identity development emotional regulation
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communication sensory processing anxiety community participation relationships and belonging
Policy must avoid oversimplifying neurodivergent experiences into systems that do not adequately understand autism-related functional impacts.
- Preserve and Strengthen Support Coordination Support coordination should not be reduced, commissioned into inflexible systems, or treated as optional.
Support coordinators provide essential functions including:
implementation support budget sustainability provider coordination crisis prevention participant education evidence gathering review preparation practical problem solving
Support coordination prevents waste and prevents crisis.
If sustainability is the goal, support coordination should be strengthened, not weakened.
- Ensure Foundational or Mainstream Supports Exist
Before Transitioning Families Away From the NDIS
Families should not be redirected to systems that:
lack capacity are inaccessible cannot manage complexity refuse high-needs families rely on unrealistic wait times
Foundational supports must be practical, funded and demonstrably available before any transition occurs.
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- Recognise the Sustainability of Informal Supports Parents are not an unlimited resource.
Carer burnout should be recognised as a legitimate disability-related risk.
Support funding helps maintain informal supports.
Without sustainable families, participant outcomes deteriorate.
Concerns Regarding Specific Provisions of
the National Disability Insurance Scheme
Amendment (Securing the NDIS for Future
Generations) Bill 2026
I understand and respect the Government’s intention to improve sustainability, reduce fraud and ensure the NDIS remains available for future generations. However, as someone living disability every day in a high-complexity household, I am deeply concerned that several proposed reforms risk unintentionally harming the very families the Scheme was created to support.
My concern is not simply about funding.
My concern is about unintended consequences.
For families like mine, these reforms may unintentionally shift disability burden away from practical support and back onto already exhausted informal carers, resulting in poorer participant outcomes, greater family breakdown and increased pressure on systems already stretched beyond capacity.
- Functional Capacity Cannot Be Understood Outside
Real Life
The Bill proposes a clearer definition of functional capacity that focuses on a participant’s intrinsic ability and excludes, as far as possible, environmental and personal circumstances when assessing functioning.
Submission 91
For autism, particularly PDA presentations, this approach risks fundamentally misunderstanding disability.
Autistic functioning is not fixed.
It fluctuates.
A child may appear capable in a quiet, one-to-one, highly regulated environment with a trusted person.
That same child may be entirely unable to complete the same task:
in a crowded environment under sensory pressure during emotional dysregulation during transitions under demand after poor sleep while competing family needs are occurring simultaneously
This is especially relevant in a household such as mine, where six autistic children live together and emotional regulation, sensory load and competing needs constantly interact.
A child who appears “functional” in a clinical room may be unable to function safely or consistently in real-world environments.
For autism, environment is not incidental.
Environment is central to functioning.
Removing environmental context risks creating assessments that are technically neat but practically inaccurate.
Disability does not occur in laboratory conditions.
It occurs in homes, schools, waiting rooms, shopping centres, sports fields and overwhelmed family systems.
I strongly recommend that functional assessments for neurodevelopmental disabilities explicitly include:
fluctuating functioning sensory impacts supervision requirements emotional regulation capacity demand avoidance and PDA presentations safety risks including absconding family-system complexity cumulative disability burden within households
Submission 91
- Disability Needs Cannot Always Be Separated Into “Direct” and “Indirect” Causes
The Bill proposes strengthening the requirement that NDIS supports arise directly from impairments meeting disability or early intervention criteria.
While I understand the intent to clarify boundaries, I am concerned this may unintentionally oversimplify disability in complex families.
In real life, disability does not occur neatly.
Conditions interact.
Support needs overlap.
My son who requires a MACE for lifelong bowel management demonstrates this clearly.
Medical specialists have explored whether his bowel issues are medical in isolation, however the practical reality is that autism significantly changes how this presents.
He does not recognise pain signals or bodily cues in typical ways.
When severely constipated, the consequences are not merely physical.
His autism-related functioning deteriorates.
We see:
increased aggression absconding behaviours emotional dysregulation meltdowns behavioural escalation increased conflict with siblings safety concerns
These are autism-related functional impacts.
Separating disability support from co-occurring complexity risks misunderstanding how disability actually operates.
Similarly, my eldest autistic child experiences identity-related challenges that cannot simply be placed under a generic mental health framework.
Autism changes:
emotional regulation
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social understanding identity processing communication anxiety tolerance belonging and community participation
A system that artificially separates these interacting realities risks denying practical supports that enable functioning.
I respectfully ask Parliament to recognise that for many neurodivergent participants:
Functional impact often exists at the intersection of disability, environment, emotional regulation and co-occurring needs.
- Restricting Reassessments Risks Ignoring Fluctuating
Disability Needs
The Bill introduces tighter controls around reassessments and requires significant ongoing changes to justify reassessment requests.
For autism and neurodevelopmental disability, support needs are rarely linear.
Needs fluctuate depending on:
puberty sensory overwhelm emotional regulation transitions into adolescence community expectations changing educational needs burnout family-system stress safety risks changes in informal supports
A child entering adolescence may suddenly require dramatically different supports.
A previously regulated participant may deteriorate due to burnout, hormonal changes or increased social demands.
Needs may not always fit a simple “major event” model.
I respectfully recommend that reassessment criteria explicitly recognise fluctuating functional needs for neurodevelopmental disability.
Submission 91
- Broad Funding Reductions Risk Destabilising Families The Bill introduces support determinations that allow reductions to categories of supports across the Scheme in the name of sustainability.
This is deeply concerning.
For my family, categories such as:
community participation support coordination daily living supports
are not luxuries.
They are stabilising supports.
Community participation is not recreation.
It is:
emotional regulation social learning community safety confidence building future employment preparation friendship building physical regulation independence development
Reducing these categories may reduce expenditure on paper.
But it risks increasing costs elsewhere through:
mental health deterioration family breakdown school disengagement justice involvement emergency services crisis presentations long-term dependency
I urge Parliament to consider sustainability across whole systems, not only within NDIS budget lines.
Submission 91
- Plan Suspension for Non-Response Risks Penalising
Disabled Families
The Bill also introduces greater ability to suspend or revoke plans where participants fail to respond to requests for information.
For many families affected by disability, executive functioning challenges, burnout and overwhelm are already immense.
In our home alone, I manage:
seven NDIS plans therapies invoices rostering homeschooling specialist appointments medication systems budgets transport safety supervision household management
Many autistic families struggle with:
paperwork overload memory difficulties email overwhelms cognitive fatigue burnout
A missed email should not place critical disability supports at risk.
I recommend mandatory disability-informed outreach and support before any suspension or revocation process occurs for high-complexity families.
- Sustainability Must Mean Preventing Collapse The explanatory memorandum repeatedly refers to sustainability.
I respectfully ask Parliament to broaden the definition of sustainability.
True sustainability is not simply reducing expenditure in one budget line.
True sustainability asks:
Submission 91
What costs are prevented through support?
Because without support:
parents burn out therapies stop children withdraw behaviours escalate safety risks increase systems become overwhelmed
My family’s lived experience has shown me what happens when systems fail vulnerable people.
It costs more.
Financially.
Emotionally.
Socially.
And, most importantly, humanly.
Support is not what creates dependency.
For families like mine:
Support is what prevents collapse.
Final Reflection: What Happens When Support
Disappears?
I ask Parliament to think carefully about what these reforms look like in a real home.
Not on paper.
Not in a budget forecast.
But in a kitchen at 7am where exhausted parents are trying to regulate multiple autistic children while managing pain and sleep deprivation.
In waiting rooms where one child absconds while another is meant to attend therapy.
In a home where support workers help children learn to communicate, tolerate the community, build friendships and imagine futures.
In homes where parents are already doing everything humanly possible.
Submission 91
The question is not:
“Can families do more?”
The question is:
“What happens when families can no longer hold everything together?”
Because families like mine are not asking for luxury.
We are asking for sustainability.
We are asking for practical supports that keep children safe, families functioning and futures possible.
The NDIS has not made my family dependent.
It has made us capable.
It gave us the chance to stop surviving and start building skills, safety, independence and hope.
Please do not remove the very supports that are helping our children become contributing members of society.
Because when families crumble, the cost is not only financial.
The cost is human.
Respectfully submitted,
Mother, grandmother, homeschool parent, carer, self-manager of seven NDIS plans, lived experience advocate and support coordinator