Submission Opposing Proposed Changes to the NDIS

I am writing this submission as both a disabled parent and the primary carer of children with significant disabilities and complex support needs.

I am also writing as someone who works alongside other families navigating disability, caring responsibilities, and the NDIS every day.

This submission is not simply about my family.

It is about the growing disconnect between policy decisions and the lived reality of disabled people and their families.

Disabled people are people.

We are not budget lines.

We are not administrative problems to be managed.

We are not costs to be reduced.

We are human beings with the same rights, dignity, value, and worth as every other Australian.

Disabled children are still children.

They have the same right to safety, inclusion, education, healthcare, friendship, community participation, and opportunity as any other child.

Any reform that makes it harder for disabled people to access supports, participate in their communities, remain safe, or live with dignity is a step away from those principles.

My family lives with the reality of disability every day.

My 15-year-old son has never been able to leave the house independently. He cannot simply ride a bike around the neighbourhood, walk the dog, catch public transport, meet friends, or enjoy the freedoms that many teenagers take for granted. Every activity requires planning, supervision, risk assessment, support, and contingency plans.

My 6-year-old son cannot reliably communicate his needs in many situations and cannot always swallow safely in certain environments. Everyday activities can carry significant risks, including choking, medical emergencies, sensory overwhelm, dysregulation, and loss of safety.

Seizures are a constant concern in our household.

Medical emergencies are a constant concern.

Safety is a constant concern.

There is never a moment where I can completely switch off.

Concerns Regarding Proposed Changes to the National Disability Insurance Scheme

I am deeply concerned about the proposed changes to the National Disability Insurance Scheme and the National Disability Insurance Scheme Amendment Bill. Consistent with the concerns raised by People with Disability Australia and many disability advocates, I believe these changes risk reducing participant rights, increasing uncertainty, and shifting greater responsibility onto disabled people and their families without adequate safeguards.

The proposed reforms appear to expand the discretion of the NDIA while reducing transparency and limiting the ability of participants to understand, challenge, and influence decisions that directly affect their lives. For families already managing complex disability-related responsibilities, this creates additional stress, confusion, and insecurity.

I am particularly concerned about changes that may restrict access to supports through narrower definitions of what can be funded, increased administrative requirements, and greater barriers to obtaining reasonable and necessary supports. These measures risk undermining the principles of choice and control that sit at the heart of the NDIS.

The proposed framework also raises concerns regarding Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities. Disabled people have the right to live independently, participate fully in community life, and access the supports necessary to exercise those rights. Legislative changes should strengthen these protections, not weaken them.

Meaningful consultation with disabled people must remain central to any reform process. Decisions about disability supports should not be made without the direct involvement of those most affected. Disabled people, families, carers, and representative organisations possess expertise that cannot be replicated through administrative processes alone.

I urge the Government and Parliament to reconsider any amendments that reduce participant autonomy, increase barriers to support, weaken review rights, or create uncertainty regarding future access to essential services. Reform should focus on improving the operation of the Scheme, reducing administrative waste, increasing transparency, and ensuring supports are delivered efficiently and fairly.

My children also have a right to have their mum simply be their mum.

They deserve time with a parent who is not constantly acting as a case manager, administrator, advocate, crisis coordinator, trainer, or system navigator.

Even support coordination cannot do the job of a parent, nor should it have to.

No service can replace the role of a mother, and no parent should be forced to spend so much time holding together fragmented systems that they lose the opportunity to simply parent their children.

To understand the reality of caring for children with complex disabilities

Imagine being the only adult providing feeding support to your 6-year-old child when your 15-year-old suddenly has a seizure. You know you may have only minutes to administer emergency seizure medication. As you leave your younger child to retrieve that medication, he begins choking and requires immediate intervention to clear his airway. Before you can return to your teenager, you must respond to the choking emergency. Then, while administering emergency medication to your older child, you must also ensure your younger child remains safe.

If doors are not secured, he may abscond due to his Level 3 autism and lack of awareness of danger. If he misunderstands what is happening, he may physically intervene or attack you because he believes you are hurting his brother. All of this can unfold within the space of five minutes. It can happen during the day, in the middle of the night, during a meal, while travelling, or at any other time without warning.

I am a disabled parent myself.

I live with my own disabilities and health conditions while caring for children with complex needs. Despite this, I am expected to perform a role that would challenge even a multidisciplinary professional team.

The NDIS often recognises individual services but fails to recognise the enormous workload required to make those services function in real life.

I am expected to act as a support coordinator, case manager, therapist liaison, educator, medical advocate, scheduler, administrator, transport provider, behaviour support implementer, trainer, crisis responder, and parent simultaneously.

I manage support workers and staff.

I recruit workers.

I train workers.

I coordinate rosters.

I oversee therapy recommendations.

I communicate between schools, specialists, therapists, hospitals, service providers, and government agencies.

I complete paperwork, gather evidence, monitor funding, respond to crises, and advocate continuously for my children’s needs.

At the same time, I am navigating housing applications, accommodation requests, community participation programs, disability systems, education systems, healthcare systems, and social support services.

Every service operates as though it is the only service involved.

Every agency requires forms.

Every agency requires meetings.

Every agency requires evidence.

Every agency requires follow-up.

Every agency requires administration.

Yet no one is responsible for overseeing the whole picture.

There is no dedicated “house manager” for families with complex disability needs.

There is no dedicated stream of support for disabled parents caring for disabled children.

There is no coordinated system that recognises the reality of what families like mine carry every day.

The result is that parents become the system.

My life is spent triaging one urgent issue after another.

I do not have the capacity to work consistently.

I often do not have the capacity to prepare meals.

Basic household tasks become difficult.

Many days are spent responding to immediate crises rather than living a life.

Community participation is often impossible without extensive support.

Without adequate funding and flexibility, our family becomes trapped at home.

This isolation affects not only disabled children but entire families.

The emotional toll is immense.

The physical toll is immense.

The financial toll is immense.

I have experienced complete burnout.

I have experienced breakdowns.

I have been physically assaulted while carrying out my caring role.

I have experienced trauma associated with years of managing extreme dysregulation, safety risks, medical concerns, and constant vigilance.

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The pressures associated with caring contribute to relationship breakdown, social isolation, financial hardship, deteriorating health, and in many families, domestic and family violence.

These realities are rarely acknowledged when policy decisions are made.

The burden placed on carers is already unsustainable.

When supports are reduced, delayed, restricted, or made harder to access, the burden does not disappear.

It shifts onto families.

And when families reach breaking point, children suffer.

I genuinely fear that without meaningful recognition and support for families like mine, the outcomes will be family collapse, relinquishment of care, hospitalisation, institutionalisation, homelessness, or serious harm.

That is not alarmism.

That is the reality many families are already living.

The impact on my own health has been profound.

There have been times when I have required medical treatment but could not access it because there was no safe alternative care available for my children.

There have been times when hospitalisation for one family member would realistically require multiple family members to be admitted because there was simply no safe care option available.

Even child protection systems, emergency services, and mainstream services are often not adequately equipped to support children with complex disability needs.

The reality is that many families are holding together systems that would otherwise collapse.

Adding to this burden is the constant requirement to repeatedly prove disabilities that have already been extensively assessed and documented.

My family has already been through years of reviews, assessments, evidence gathering, and legal processes.

We have already fought through the Administrative Appeals Tribunal.

We have already spent years proving what specialists, therapists, schools, doctors, and families have known all along.

Yet families continue to be asked to prove disability again and again.

This process consumes enormous amounts of time, money, energy, and funding that could be better spent supporting people.

We have spent close to $150,000 in NDIS funding simply trying to get the agency to apply its own rules correctly.

That should concern every taxpayer.

Far too much money is being spent fixing administrative failures, litigation, reviews, appeals, and repeated reassessments rather than providing meaningful supports.

At the same time, disabled people continue to face barriers accessing basic supports, accessible communication, and genuinely person-centred decision making.

The answer is not to make support harder to access.

The answer is to build a system that works properly that is implemented consistently by trained humans not by a one size fits all test like the ICAN.

It is also important to recognise that disability is not something that happens only to a small group of people.

Any one of us could become disabled at any time.

A stroke.

A car accident.

Cancer.

A neurological condition.

A genetic condition.

A premature birth.

A serious illness.

Disability is part of the human experience.

The NDIS exists because Australia recognised that disability support should not depend on luck, wealth, geography, or whether families can continue sacrificing themselves indefinitely.

Supporting disabled people is not charity.

It is not waste.

It is not generosity.

It is the practical application of human rights.

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It is a reflection of the kind of society we choose to be.

When disabled people are supported, they participate in their communities.

When families are supported, children remain safely with their families.

When carers are supported, crises are prevented.

When supports are provided early and appropriately, we prevent hospital admissions, mental health crises, family breakdown, homelessness, child protection involvement, and far more expensive interventions later.

Supporting disabled people and their families is not only morally right.

It is socially responsible.

It is economically responsible.

Most importantly, it is human.

I ask decision-makers to remember that behind every policy, every funding decision, every legislative amendment, and every budget measure are real people.

People who are trying to survive.

People who are trying to raise their children.

People who are trying to participate in their communities.

People who are trying to live meaningful lives.

Disabled Australians deserve dignity.

Disabled Australians deserve opportunity.

Disabled Australians deserve safety.

Disabled Australians deserve support.

And disabled children deserve a future in which their value is never measured against a balance sheet.

I strongly oppose any changes that increase administrative burden, reduce flexibility, restrict access to supports, diminish participant choice and control, or transfer additional responsibility onto families who are already carrying more than should ever be expected of them.

The measure of a society is not how it treats those with the most power.

It is how it treats those who are most vulnerable.

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I urge the Government to protect the rights, dignity, safety, and futures of disabled Australians and the families who support them every day.