NDIS Participants and Providers Australia

01/11/2026

From a mother who has had a gutful

To anyone who cares to read.
I am a Mum.

I am an Australian-born citizen. My children are Australian-born citizens. We are Australians. Yet inside the NDIS, too often, we are treated as less than that.

I am writing this as a mother who has had a gutful.

I am writing this as a mother who does not know how much more she can take.

I am writing this as a mother who has spent nine years fighting a system that was supposed to support my children, not break me.

Nine years.

Nine years of reports, reassessments, functional capacity assessments, forms, emails, planner meetings, evidence requests, reviews, explanations, follow-ups, trauma, silence and bureaucracy.

I have done more paperwork for the NDIS than I did in my entire schooling.

And still, somehow, I am expected to keep proving the same thing.

My children have significant, lifelong and permanent disabilities.

Permanent means permanent.

Lifelong means lifelong.

Severe and profound intellectual disability does not go away.

Rare genetic conditions do not go away.

Being non-speaking does not go away because a new planner is allocated.

Autism level 3 does not disappear because a plan period ends.

My children do not become less disabled because the NDIA wants a refreshed document.

Again, I need the paediatrician.

Again, I need the occupational therapist.

Again, I need the functional capacity assessment.

Again, I need doctors and therapists with decades of experience to explain what has already been explained to planners with no comparable clinical authority.

How many ordinary Australians have to keep going back to their doctors, paediatricians and treating specialists to be re-diagnosed with the same permanent condition over and over again?

How many average Australians have to repeatedly prove to a stranger that lifelong still means lifelong?

How many average Australians have to continually prove that their disability is really real, as though they are lying?

That burden is placed on us.

On NDIS participants.

On disabled people.

On parents and carers already living the reality every day.

So do not tell us we have equality.

We do not.

Do not tell us we have equity.

We do not.

Other Australians are not forced to repeatedly reopen medical evidence, trauma, diagnosis, vulnerability and dependence in front of non-clinical decision-makers just to keep basic support in place.

That is discrimination dressed up as bureaucracy.

That is systemic harm dressed up as process.

That is administrative abuse of a power imbalance.

It is also a waste of public money. It clogs up the health system. It wastes Medicare. It wastes doctors’ appointments. It wastes allied health time. It wastes family time. It wastes planner time. It wastes Tribunal time. It wastes government money.

All so a parent can hand yet another document to a planner who may not even understand the disability, the diagnosis, the functional impact or the lifelong support need.

I have the proof.

I have the documents.

I have the reports.

I have the email chains.

I have the hard drives full of evidence just for my children.

I am ready to show the media. I am ready to show any minister. I am ready to show the mountains of paperwork this system has forced onto one family just to prove what our treating professionals have already proven again and again.

The NDIS was supposed to help people with disability live ordinary lives like other Australians. The NDIS Act says the Scheme is meant to support independence, social and economic participation, reasonable and necessary supports, choice and control, full inclusion, safety from poor-quality or unsafe supports, dignity, lifetime certainty of care, and respect for families and carers. 

Instead, too often, it feels like being trapped in an abusive power relationship with a government agency.

I do not say that lightly.

The power imbalance speaks for itself. The NDIS holds the funding. The NDIS questions the evidence. The NDIS delays decisions. The NDIS asks for more reports. The NDIS changes interpretations. The NDIS can say no. Families are expected to stay polite, grateful and compliant while fighting for supports our children need to live safely.

The NDIS says it will not tolerate abuse, harm, threats or violence.

I agree.

But why does that standard not apply to the way the system treats families?

Harm is not only physical. Abuse is not only someone yelling. Threats are not only spoken out loud. Violence is not only what happens in a room.

There is administrative harm.

There is systemic abuse.

There is coercion through silence, delay, fear and funding control.

When a family depends on supports for their children’s safety and survival, and the agency can delay, deny, ignore, reassess, reduce, question, threaten review, demand more evidence, force trauma to be retold, or send families into a Tribunal against government-funded lawyers, that is not a neutral process.

That is power.

When that power is used without proper care, training, accountability or humanity, it becomes harmful.

The threat of losing supports.

The threat of being found not eligible.

The threat of being told your child’s permanent disability is not proven enough.

The threat of another reassessment.

The threat of another report.

The threat of being ignored until crisis.

The threat of having to fight lawyers.

The threat of being pushed back to services that do not exist.

The threat of being told your child’s lifelong disability is just an untreated problem.

That is not safety.

That is not dignity.

That is not choice and control.

I love my children with everything I have.

It is the honour of my life to be their mum.

They are two of the best humans you will ever meet. They are loved. They are cared for. They are not defective. They are not flawed. They are different.

But this system makes me feel like I am failing them.

The process tells me I am not enough. The media tells families like mine we are part of a “cost blowout”. Politicians talk about sustainability while our children are spoken about like numbers, risks, burdens and budget pressure.

We are not anti-reform.

We want the NDIS to work.

We want fraud stopped. We want exploitation stopped. We want dodgy providers removed. We want public money protected. We want the Scheme to survive because our children need it for life.

But do not call abandonment reform.

Do not call semantics reform.

Do not change words like “permanent”, “reasonable”, “appropriate treatment”, “functional capacity” and “support need” in ways that force families to prove the incurable is still incurable.

The Government says access changes will begin from 1 January 2028, with access based on a standardised functional-capacity assessment, existing participants progressively reassessed over three years, and the NDIA assessing whether treatment has happened, whether no other treatment is likely to help, and whether the impairment is permanent or lifelong. 

That language might sound technical in Parliament.

In a family home, it lands like a threat.

Therapy is not cure.

Medication is not cure.

Behaviour support is not cure.

Communication support is not cure.

Allied health is not cure.

Managing a lifelong disability is not evidence that the disability is temporary.

Do not ask what “appropriate treatment” we have exhausted for a rare genetic condition, severe intellectual disability, profound disability or autism level 3 unless the NDIA can identify a real, known, available, safe, clinically appropriate, evidence-based treatment that would actually remove the impairment or reduce lifelong support needs to the point NDIS support is no longer required.

The current NDIS Becoming a Participant Rules already say an impairment is permanent only where there are no known, available and appropriate evidence-based treatments likely to remedy the impairment. Those same rules also recognise that an impairment may still be permanent even if its functional impact may fluctuate or improve, and that treatment can continue after permanency has been demonstrated. 

So do not ask mothers to cure the incurable.

My children are exactly who this Scheme was created for.

They are the children the old system would have institutionalised.

They are the children the old system would have medicated to the eyeballs instead of properly supporting.

Even in 2025, I had a planner ask about medications and antipsychotics in a planning meeting, as though he had some authority to medically question or steer my child’s treatment. This happened in front of our paediatrician, a pre-eminent clinician and professor in his field.

That should never happen.

A planner is not a paediatrician.

A planner is not a psychiatrist.

A planner is not a geneticist.

A planner is not a treating doctor.

A planner should not imply medication is a substitute for disability support.

Families are being forced to sit across from people with no apparent clinical background, who often lack the training, humility or competence to properly understand rare genetic conditions, severe and profound intellectual disability, autism level 3, complex communication, behaviour as communication, trauma, medical fragility and lifelong vulnerability.

We have had two amazing planners.

Two.

Out of many.

That should shame the system.

And let me say something about parents, grandparents and carers like us.

When you have children like mine, you become a researcher whether you wanted to or not.

You become an investigator.

You become a case manager.

You become a risk assessor.

You become a clinician translator.

You become the person who reads the reports, tracks the patterns, learns the diagnoses, watches the behaviours, understands the triggers, checks the medication, studies the therapies, documents the evidence, follows the paper trail and connects the dots that systems keep missing.

There is a small group of families like ours.

Small, yes.

But we matter.

You will not find better researchers, better investigators or more determined advocates than parents, grandparents and carers of children with profound, severe, lifelong and complex disability.

Because if we get it wrong, our children suffer.

If we miss something, our children suffer.

If the system fails, our children suffer.

If a provider harms them, our children suffer.

If a planner misunderstands them, our children suffer.

If support is delayed, reduced or denied, our children can be harmed, hospitalised, traumatised, neglected or placed at risk.

This is not theory for us.

This is not policy.

This is not a job description.

This is our children’s lives.

I have been offered work by professors as a research assistant because the level of knowledge, investigation, pattern recognition and evidence gathering parents like me develop is real. We do not do this because we are trying to be difficult. We do it because our children’s safety depends on it.

After all of that, to have a planner, bureaucrat or decision-maker imply that we have not shown up, have not done enough, have not tried hard enough, have not provided enough, have not proved enough, have not treated enough, have not explained enough that is deeply insulting.

It is offensive.

It is demeaning.

It is ignorant.

Families like mine have shown up every day for years, often with no sleep, no break, no backup and no guarantee that anyone will help.

We have shown up in hospitals.

We have shown up in therapy rooms.

We have shown up in schools.

We have shown up in specialist appointments.

We have shown up in planning meetings.

We have shown up in complaints.

We have shown up in reviews.

We have shown up in trauma.

We have shown up when the system did not.

So do not sit across from us with a checklist and act as though we are the ones who have failed to do enough.

We are not the failure.

The failure is a system that cannot recognise the evidence already in front of it.

The failure is a system that makes families prove the same permanent disability over and over again.

The failure is a system that dismisses the knowledge of the people who know these children best.

The failure is a system that treats parent expertise as emotion, but treats planner ignorance as authority.

And then there is the silence.

I write emails to planners and do not even get a response. Not a proper answer. Not an acknowledgement. Not a clear decision. Not lawful reasons. Sometimes nothing.

Do you know how insulting that is?

Families are told to provide evidence, upload documents, attend meetings, justify supports, explain trauma, explain disability, explain vulnerability and produce paperwork on demand.

But when we ask questions, raise concerns, ask for clarity or beg for help, silence is treated as normal.

That is not administration.

That is harm.

What are planners being paid to do if families cannot even get a response?

From where I sit, too many families are doing the work. We chase. We follow up. We repeat ourselves. We send reports. We correct errors. We carry the emotional labour, the paperwork, the risk and the consequences.

The planner gets paid.

The family gets buried.

The child suffers.

And then the system wonders why parents break.

This silence does not only come from planners.

In my experience, writing to Minister Jenny McAllister’s office about NDIS matters gets pushed back into the same loop: send it to the NDIS.

That is not accountability.

That is a referral circle.

The official NDIS website lists Mark Butler as Minister for Health and Ageing, Disability and the National Disability Insurance Scheme, and Jenny McAllister as Minister for the National Disability Insurance Scheme. 

So when families write to ministers because the agency is failing them, do not send us back to the same agency we are complaining about.

That is bureaucracy protecting bureaucracy.

Families do not write to ministers because we enjoy paperwork. We write because planners will not answer. We write because decisions are wrong. We write because children are going without. We write because the regulator is not protecting people. We write because the system keeps pushing responsibility away from itself.

When Minister Butler stands in Parliament talking about “sustainability”, “permanence”, “appropriate treatment”, “functional capacity” and “reasonable supports”, families like mine hear something very different.

We hear fear.

We hear another test.

We hear another reassessment.

We hear another way to make permanent disability negotiable.

Maybe politicians need to stop hiding behind polished phrases and start understanding the actual meaning of the words they are using.

Because “choice and control” does not mean silence.

“Reform” does not mean abandonment.

“Sustainability” does not mean breaking families.

“Appropriate treatment” does not mean asking mothers to cure genetic conditions.

“Functional capacity” does not mean ignoring lifelong disability.

“Ministerial responsibility” does not mean forwarding desperate families back to the very machine that is failing them.

When Minister Butler talks about one in five plans going back for unscheduled reassessment, that should not be used as proof that participants are the problem.

It proves something else.

It proves too many original plans are wrong.

It proves planners are not getting it right the first time.

It proves families are going without support and then being forced into review, reassessment, internal review and the Administrative Review Tribunal just to get what should have been understood at the start.

If plans increase after reassessment, ask the obvious question: why were those plans underfunded in the first place?

Why are disabled people and carers forced to fight government-funded lawyers?

Why is a government agency allowed to make poor decisions and then use legal power against exhausted families?

Guardian Australia reported that the NDIA paid $60.7 million to six external law firms in 2024–25 to represent it at the Administrative Review Tribunal, while most NDIS participants were self-represented.  Guardian Australia also reported ART data saying that in nearly three-quarters of NDIS cases 73% in the eight months to June 2025, the NDIA decision was overturned. 

That is not justice.

That is exhaustion by design.

The NDIA says it has model litigant obligations and that it and its lawyers must act with honesty, integrity, fairness and the highest ethical standards in Tribunal matters. 

Then act like it.

Do not use lawyers to defend decisions that should never have been made.

Do not use legal power to exhaust disabled people.

Do not make parents of children with severe, profound, permanent and lifelong disability fight government-funded lawyers just to get supports their doctors, therapists and specialists have already said are necessary.

A government lawyer should not be used as a weapon against a disabled person.

A Tribunal should not be where planners’ mistakes go to be corrected after a family has been broken.

Many of us are burnt out beyond words.

We are not thriving.

We are barely functioning.

Some days we are not even living. We are existing because our hearts keep beating, because breathing is automatic, because our children still need us, because there is no one else who will step in when the system fails.

That is not resilience.

That is survival.

And how long can families keep surviving inside a system that keeps using its power against them?

Why does it always have to reach crisis point before anyone notices?

Why do families have to be breaking before the system acknowledges us?

So far this year nearly five months I have left my house only three times.

Three times.

I have a nearly 15-year-old child who depends on me for everything. Care. Safety. Regulation. Communication. Supervision. Advocacy. Daily living. Crisis prevention. Survival.

I challenge any Australian parent, disabled or not, to sit with that reality.

If an average Australian, parent said they had left their house only three times in five months because their child needed them for everything, people would call it a crisis.

For families like mine, the system calls it ordinary.

Do not wait until mothers break and then call it evidence.

Do not wait until children are in crisis and then call it support.

Do not wait until families are trapped, isolated and desperate before deciding their needs are valid.

And there is something else this system keeps doing to families: it makes us relive the worst moments of our children’s lives over and over again.

I live with complex post-traumatic stress disorder.

That is not a slogan. That is not drama. That is what happens when a parent has spent years living in crisis, fear, danger, sleep deprivation, bureaucracy and repeated retraumatisation while trying to keep children with significant lifelong disability safe.

Every time the NDIS asks for “fresh evidence”, it is not just paperwork.

It means going back through 2013.

It means going back through 2018.

It means going back through incidents that nearly destroyed us.

It means retelling, rewriting and reliving the day my daughter ran through a window and impaled herself. It means reliving the fear, the blood, the danger, the terror, the aftermath, and the reality that she was a child being forced to exist in a world that was not built for her.

It means explaining again that she broke window after window because distress, disability, environment, communication and safety were not properly understood.

And then I have to package that trauma into a report, an email, a planning document, a functional capacity assessment, a “support need”, a “risk”, a “behaviour of concern”, a line item for someone else to judge.

How many times does a mother have to relive her child’s worst moments before the system believes her?

How many times does trauma have to be converted into paperwork?

How many times does a child’s pain have to become evidence?

My nervous system does not switch off anymore. The stress lives in my body. My brain and body have been changed by years of crisis.

I cannot sleep.

We recently kept a sleep log over 76 days.

My average sleep was 1.9 hours a night.

One point nine hours.

How many people sleep like that and function?

How many people could care for children with profound and lifelong support needs on that little sleep, then answer emails, chase planners, gather evidence, attend meetings, fight decisions, manage providers, handle trauma, and keep being told to provide more?

And I need people to understand this clearly:

I am not on the NDIS.

My children are.

I am the mother holding the system together around them.

I am the one doing the unpaid labour.

I am the one losing sleep.

I am the one reliving trauma.

I am the one writing the emails.

I am the one collecting the reports.

I am the one explaining the same disability again and again.

I am the one being broken by a system that is supposed to support my children.

So when the Government talks about sustainability, I want them to ask a different question.

How sustainable is it to break the parent who is keeping two significantly disabled children safe?

How sustainable is it to make families relive trauma as evidence?

How sustainable is it to force mothers into crisis before anyone listens?

How sustainable is it to demand more paperwork from people who are already barely sleeping, barely coping, barely surviving?

This is not just inefficient.

It is cruel.

My children were diagnosed before the NDIS was ever an idea to most people.

Before the Scheme, families relied on charities, free information sessions, community groups, disability organisations, parent networks and whatever support we could find. It was not perfect. It was not enough. But there was community.

Now, the NDIS has turned many of us into signposts for providers. We have become referrals, billable hours, plan values and market opportunities. Disability has been turned into a commodity.

Families are told we have “choice and control”, but too often we are choosing between providers inside a market built around our children’s needs.

Some organisations that once felt like community now operate inside a system of funding streams, provider models, charitable status, grants, tax advantages and service delivery economics.

So when government talks about pushing people back to “mainstream services”, “community supports” or “foundational supports”, families hear something very different.

We hear: back to nowhere.

Where are those supports?

Where are the charities now?

Where are the free information sessions now?

Where is the mainstream system ready to support severe, profound, complex, lifelong disability?

If my children were taken off the NDIS tomorrow, who would actually come?

A couple of our providers who genuinely care about our family would ask why. They would worry.

But would the system come?

Would the NDIA come?

Would government come?

No.

Because when disabled people fall through gaps, it is always no one’s responsibility. Another form. Another review. Another department. Another “not us”. Another “health should do that”. Another “education should do that”. Another “mainstream should do that”. Another “please provide further evidence”.

Paper gets shuffled.

Responsibility gets shifted.

Families get exhausted.

Disabled people pay the price.

There is another silence no one wants to talk about.

Families like mine are not only silenced by government, planners, bureaucracy and media narratives. Sometimes we are silenced by our own disability community too.

Because our children cannot speak in the way Parliament listens.

Our children cannot sit in a Senate inquiry and explain their support needs.

Our children cannot write a media statement.

Our children cannot argue policy language.

Our children cannot defend themselves against planners, providers, lawyers, ministers or headlines.

My children have profound, severe, permanent, lifelong disabilities. They will need support 24 hours a day, seven days a week, for the rest of their lives.

So who speaks for them?

The people who love them.

The people who care for them.

The people who understand their communication, their distress, their joy, their pain, their danger, their needs and their dignity.

The people who keep showing up when they are exhausted, traumatised, burnt out and losing hope.

Parents and carers like me are not trying to erase disabled voices. We are trying to protect the disabled people whose voices are ignored because they do not communicate in neat, public, politically acceptable ways.

I am not speaking over my children.

I am speaking because I am responsible for them.

I am speaking because I know them.

I am speaking because if I stay silent, systems that already fail them will decide for them.

There is no mental health day here.

There is no clock-off time.

There is no “I cannot today.”

There is no break from profound disability because the parent is burnt out.

And the truth that keeps parents like me awake at night is this:

What happens when I die?

Who will love my children like I do?

Who will understand them like I do?

Who will protect them like I do?

Who will know what their sounds mean, what their behaviours mean, what their distress means, what their joy means?

Who do I leave them to?

And how could I ask anyone, with a clear conscience, to take on what this system has made almost impossible for even their mother to carry?

That is the fear behind every form, every plan, every reassessment, every unanswered email, every fight with the NDIA and every sleepless night.

There is also a safeguarding issue that must be spoken about carefully but directly.

Because matters are before the court, I will not name the practitioner, company or individuals here. But I will say this: my family was harmed by a registered practitioner operating inside the disability system.

Registration did not protect us.

Audits did not protect us.

The system did not protect us.

So do not lecture families about “registered providers” like registration automatically means safety.

Registration is not safety when audits are weak.

Registration is not safety when supervision fails.

Registration is not safety when families have to chase documents for months.

Registration is not safety when the practitioner, provider, company structure, owner, supervision and audit trail are not all properly examined when harm occurs.

I have records, emails and receipts raising serious concerns about many registered providers. I have seen providers hide behind the words, “We were audited” and “We passed.”

If that is the answer, then the audits are failing too.

Where is the accountability?

Where is the document trail?

Where is the regulator following the harm through the whole chain?

Where is the urgency?

The Disability Royal Commission exposed violence, abuse, neglect and exploitation of people with disability and made 222 recommendations on improving laws, policies, structures and practices so people with disability can live free from violence, abuse, neglect and exploitation.  It also identified ableism as a fundamental driver of violence, abuse, neglect and exploitation. 

Yet families are still living this. Still begging for safeguards to mean something. Still being harmed inside systems that claim to protect us.

The Government says it wants to restore the NDIS to its original intent of supporting people with permanent and significant disability, and says its reform pillars include fighting fraud, slowing rapid cost increases, clearer eligibility requirements, and delivering quality services and support. 

Then do that.

Do not frighten families.

Do not blame participants.

Do not punish children.

Do not tighten the front door while registered providers, failed audits, poor planning and weak safeguards keep hurting people.

Do not use fraud narratives that make disabled people look like the problem when families like mine have been raising fraud, rorts, provider misconduct and safeguarding failures for years.

If government wants reform, start there.

Train the planners.

Audit the auditors.

Fix the safeguards.

Stop the rorts.

Hold providers accountable.

Answer families’ emails.

Give lawful reasons.

Stop making families reprove permanent disability.

Stop using government lawyers to exhaust disabled people.

Stop pretending community supports exist where they do not.

Stop treating disabled Australians like commodities in a privatised market, then acting shocked when the market fails them.

Apply the law properly.

A planner should not be able to override decades of medical and allied health evidence with ignorance and a checklist.

A government agency should not be able to make poor decisions and then defend them with taxpayer-funded lawyers against exhausted disabled people and families.

A registered provider should not be able to point to an audit while families are harmed.

A minister should not be able to send desperate constituents back to the agency they are desperate about.

A media outlet should not be able to call the NDIS a blowout without showing the human beings behind the supports.

I am not asking for pity.

I am asking for lawful, competent, humane governance.

I am asking for reform that targets fraud, not children.

I am asking for reform that targets provider failure, not families.

I am asking for reform that protects the Scheme without breaking the people who need it.

I am asking for the Government and the media to remember that behind every “plan”, every “cost”, every “participant number” and every “eligibility reform” is a human being.

My children are not defective.

They are not failed treatment projects.

They are not budget blowouts.

They are not provider opportunities.

They are not paperwork.

They are Australians.

They are loved.

They matter.

And I have had a gutful of a system that keeps making families prove that.

I fed up Mum