Submission 2262

Submission to the Senate Inquiry

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

28 May 2026

Preliminary Statement: A note to our Ministers

Before beginning this submission, I want to acknowledge that it may not be perfectly

structured, concise, or professionally formatted in the way submissions to the Senate are often expected to be.

I am an autistic person with a communication disability being asked to explain, in writing,

why proposed legislation may profoundly impact my safety, functioning, parenting capacity, employment, and future.

                          That task itself is difficult.

Many autistic people struggle to organise thoughts linearly, summarise complex lived experiences briefly, regulate emotionally while recounting distressing realities, or translate years of invisible labour and disability into language that feels “professional enough” to be taken seriously.

Yet we are repeatedly required to do exactly that in order to access support, defend support, justify support, and now fight to keep support.

Even writing this submission has required enormous emotional, cognitive, and executive effort.

I ask that this submission be read not for perfect formatting, but for the reality it describes.

Position on the Bill

I am writing to strongly oppose the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am one of the people this bill appears designed to push out of the NDIS.

I am one of the “160,000 participants” being discussed in policy papers, projections, and media commentary as though we are numbers on a spreadsheet instead of human beings.

Submission 2262

Personal Context

I am an autistic Level 1 woman living with complex trauma related to family violence and coercive abuse. My daughter is autistic Level 2.

Under the proposed tightening of eligibility and functional capacity requirements, both of us could be considered the type of participants the government wants redirected away from the NDIS and into underfunded “foundational supports” or mainstream systems that are already overwhelmed.

My daughter may be told to rely on programs like Thriving Kids instead of the individualised disability supports she actually needs.

Functional Capacity

What this bill fails to understand is that many autistic people — particularly women and children — survive by masking.

We are not “less disabled” because we can sometimes appear articulate, compliant, intelligent, or functional in short assessments.

We are often exhausted, burnt out, dysregulated, and barely coping behind closed doors.

This bill appears to punish people for surviving or not being “disabled enough”.

Limitations of Functional Capacity Assessments

The proposed emphasis on “functional capacity assessments” is deeply concerning because functioning fluctuates.

I can when supported communicate professionally, advocate for my child, or appear composed in appointments while privately struggling to regulate sensory overload, hypervigilance, executive dysfunction, trauma responses, and burnout.

Professionals often see a small snapshot of our lives. They do not see the aftermath. They do not see me sitting in my car crying after appointments because every interaction has required enormous effort to hold myself together. They do not see the nights where I am so overwhelmed by the cumulative demands of parenting, administration, therapies, mental load and daily functioning that I cannot speak properly or move from exhaustion.

They do not see how long simple tasks take when both my daughter and I are dys regulated.

They do not see the constant mental load involved in trying to keep our lives stable and safe.

Disability does not disappear simply because it is hidden.

These changes ignore reality.

Submission 2262

Failure of “Foundational Supports” and Mainstream Systems

The reality is that mainstream systems are already failing disabled families.

Schools are overwhelmed. Mental health systems are overwhelmed. Public paediatrics are overwhelmed. Family violence systems are overwhelmed. Parents are overwhelmed.

Redirecting disabled children and adults away from the NDIS does not magically create support elsewhere. It simply leaves families unsupported until they reach crisis point.

For autistic women especially, the consequences are severe.

Many of us were diagnosed late because we spent years masking and internalising distress.

We already struggle to be believed.

We are already told we are “too functional” for help while privately drowning.

The government speaks about “foundational supports,” “reasonable and necessary,” and “scheme sustainability” in abstract policy language.

I need Parliament to understand what these changes actually look like in real life for

families like mine.

Flexible Funding and Parenting Reality

I am a single parent.

One of the most important things my current funding allows me to do is use supports flexibly.

Around 70% of my funding is categorised as social and community participation, but under the current legislation I can use this flexibly for assistance in the home when required.

This flexibility is not a loophole or misuse of funding.

It is the only reason my household functions safely.

By taking my funding from social participation, you effectively leave me housebound WITHOUT in home support, because I would have NO OTHER funding. Effectively my core supports would be NIL.

What Support Actually Looks Like

Submission 2262

Support workers are often the difference between my daughter getting to kindergarten or not.

On difficult mornings, my daughter can become so distressed about attending kinder that the process of leaving the house can take an additional one to three hours.

She may refuse to dress, refuse to get in the car, become physically dysregulated, scream, hit, kick, or attempt to flee.

This is not “bad behaviour.”

It is disability.

Without support workers, I am left trapped in impossible situations.

I have had mornings where I am forced to choose between:

• arriving at work one or two hours late yet again and hoping my employer understands for the third time that week,

OR

• attempting to drive an unrestrained, highly distressed child to daycare while she kicks me, screams, and dysregulates in the car, praying I do not crash the vehicle, get pulled over by police, or lose control while trying to keep us both safe.

Then we arrive at daycare, where I leave my child screaming and requiring physical restraint by educators while I drive away shaking, dysregulated, traumatised, and trying to somehow function at work afterward.

This is the reality hidden behind discussions about “scheme sustainability.”

These are not abstract administrative changes. These decisions determine whether disabled parents can safely transport their children, maintain employment, regulate their nervous systems, and keep their families stable.

Without support, the choices become unsafe no matter which option we take.

This is what unsupported parenting looks like.

What Support Workers Actually Do

People hear “support worker” and imagine luxury or convenience.

In reality, support workers are often helping with things most people take for granted:

• helping transition my daughter into the car safely
• helping calm her enough to leave the house
• supervising while I shower or regulate after severe overwhelm
• helping me manage household tasks when executive functioning collapses
• assisting with emotional co-regulation during meltdowns

Submission 2262

• helping maintain routines that prevent crisis escalation
• and simply providing another regulated adult presence so everything does not fall apart

There are days where the additional hour or two of support is the difference between:

      -  my daughter attending kinder versus complete school refusal
      -  me remaining employed versus losing my job
      -  a regulated household versus both of us spiralling into distress
      -   or a safe environment versus a crisis situation

Breakdown Without Supports

Without supports, basic daily functioning begins to collapse very quickly.

Meals become harder. Cleaning becomes impossible. Paperwork piles up. Phone calls go unanswered. Appointments are missed. I become increasingly isolated and housebound. Burnout escalates.

My daughter becomes more dysregulated because children absorb the stress of overwhelmed parents.

Purpose of Supports

People often assume parenting support means someone else is raising your child.

That is not what this is.

The NDIS support allows me to remain the stable parent my daughter needs.

It allows me to recover enough from overload to respond calmly instead of reactively. It allows me to meet her sensory and emotional needs more consistently. It allows me to continue working part-time despite disability and significant caregiving demands. It allows me to keep our home functioning.

It allows me to survive.

Flow-On Effects: Workforce and Economic Impact

I am also part of the workforce that supports the NDIS.

Submission 2262

I work in a very specific role, working with autistic Level 3 participants, severe intellectual disability, complex participants in the NDIA complex pathway, youth justice clients and out of home care clients.

There are very very few people that can and want to be employed in this area.

These are often plans that sit between $1—5 million per year.

My plan is 60k. That 60k of support actually allows me to earn 80k in income, which is then taxed and put back into the economy. Without that 60k, it is not a saving.

It becomes:

      -   approximately 40k in Centrelink income support
      -  A loss of tax contribution
      -    It means I cannot pay private health insurance.
            It means I cannot afford a private paediatrician or psychiatrist, which then adds
      burden to public systems.
      -    It means I join a public housing waitlist because I cannot afford private rental.
      -    It means I cannot recover from carer burnout.
      -  And that means I begin to deteriorate.
      -   For autistic people, that can mean:
       o  self-injury
       o  shutdown
       o  severe mental health decline
      -  Which then leads to:
       o  emergency departments
       o  inpatient units
       o  child protection involvement

My child, without support, also escalates and enters those same systems.

Support Workforce Efficiency

My three support workers are not registered providers.

They include:

      -  an occupational therapy student supporting herself through study so she can
        give back to this community
      -  a nursing student doing the same
      -  a mother of three children with years of experience in autism support and
       education

They charge less than an agency. More importantly, they do not charge for kilometres, set- up fees, notes, administrative time, the extra 10—15 minutes of a shift that real life requires. So yes, I can go to an agency. But it will cost you more. For far less.

Submission 2262

System Impact

These reforms claim to reduce costs, but the likely outcome for many families will be increased involvement with:

      -   child protection
      -  emergency mental health systems
      -   family violence services
      -   hospital systems
      -  homelessness services

The NDIS currently prevents these outcomes for my family and saves your government hundreds of thousands of dollars.

Early Intervention

Finally, the position on early intervention — and the proposal to redirect children with “mild delay” and “moderate delay” into other systems — fundamentally delays the very purpose and nature of early intervention.

It does not reduce need. It delays it.

I was part of the Barwon NDIS trial. At that time, we had “packages” of $12k, $16k and $22k— the Level 1, 2 and 3 of transdisciplinary early intervention support. This was around 2017.

There is now discussion about returning to “packages”.

But do you have the data from those trial sites? Because this was already trialled. It was then removed in favour of ECEI partners — NDIA design decisions. And now we are spending significant resources to restructure back toward something that previously existed.

My daughter is often described as the poster child for early intervention.

She began receiving support at 2.5. At that time she had global developmental delay. She was traumatised. There was DFFH legal involvement.

Children in this position do not simply “catch up” without individualised support.

Many of them go on to become the young people you later see in youth justice systems. They become the highly traumatised, dysregulated adolescents. The substance-affected young people. The cases that require intensive, high-cost intervention. The ones later described in the media in extreme terms — the “machete kids”.

That is the trajectory without early intervention. NDIS changed that trajectory for my daughter.

Submission 2262

She received speech therapy, occupational therapy, play therapy, and psychology. I received parent support, because early intervention is not only about the child — it is about stabilising the environment around them.

As a result, she is now preparing to enter Prep in a mainstream school in 2027.

That is what early intervention is supposed to do.

It reduces long-term complexity. It reduces long-term cost. It allows children and families to stabilise instead of escalate.

Redirecting children with early developmental delay away from the NDIS does not save money. It delays support until needs are more entrenched, more complex, and far more expensive to address.

Early intervention is not where you save money.

It is where you avoid much higher costs later.

The flexibility within my funding is not wasteful spending.

It is early intervention, crisis prevention, child safety, and family preservation.

This bill risks creating a system where only the most visibly impaired qualify, while everyone else is expected to survive unsupported until they break.

My daughter and I are not budget figures.

We are human beings trying to survive in systems that are already failing us.

When you vote for this bill, remember you are not removing cost.

I urge you to consider - What is the actual “saving” in this Bill?

A short-term reduction in a budget line, but a long-term increase in system demand, complexity and human harm.

You are deciding where that cost, and that harm, will go.

Sincerely,

1 of your 160,000.