People See The Performance, Not The Cost
A lived and professional perspective on invisible disability, support,
and the proposed NDIS reforms
Fiona Fonti
18 May 2026
An Auslan version of this piece is in development.
I want to talk honestly about the proposed NDIS reforms — and why many people with disability are scared about what may happen next.
This is difficult for me to say publicly. It feels vulnerable. But it matters, so I’m saying it anyway.
I’m speaking from my own lived experience as someone who is profoundly Deaf, Autistic, ADHD, with neurological disability and chronic health conditions.
I’m also speaking as an occupational therapist, a business owner, a parent, and someone who is trying very hard to keep contributing.
I’m speaking from my own lived experience. I do not speak for every Deaf person, every Autistic person, every neurodivergent person, or every person with disability.
Even when people share the same diagnosis or disability, our needs, experiences, communication preferences, support needs, culture, identity, and access requirements can be very different.
I’m sharing my experience because it helps explain what is often invisible.
Government systems and policies need to understand that disability support cannot be designed around assumptions about what people appear to be able to do on the surface — without understanding the invisible support, scaffolding, adjustments, and effort needed to make that possible.
Invisible Disability Is Still Misunderstood
One of the biggest problems in these reform conversations is that invisible disability is still deeply misunderstood.
Because people often only see the outcome or the performance.
They see:
- someone working Page 1 of 10
- someone speaking
- someone parenting, advocating, and showing up
- someone who looks “high functioning” But they do not see what it takes to make that possible.
They don’t see:
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the masking
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the constant adjustments
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the preparation before… and the shutdown after They don’t see:
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the cognitive load
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the sensory overload
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the communication effort They don’t see:
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the technology
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the supports
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the family labour
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the sheer amount of energy it takes just to hold things together They see the performance, but not the cost.
And I’ll be honest — that part is exhausting.
Because what isn’t seen is the years it has taken to get here.
That has included:
- months in rehab and hospital
- years rebuilding after that
- four years where I wasn’t medically allowed to drive because of my disabilities All while raising young children — and trying not to let my disabilities mean they missed out on normal childhood things.
That was only possible because of support.
Support from:
- my family
- my allied health team
- formal supports through the NDIS
- my work team
- and all the additional supports I’ve had to self-fund and put in place outside of the system
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It has been a long fight — supported by all of those people — to get to a plan that mostly meets my needs.
Not perfect, but it has provided some stability.
And that stability is what has enabled me to get to where I am now.
But “now” is only possible because those support systems are in place.
Any reduction or change to my supports doesn’t just “adjust” or “correct” things.
It destabilises everything.
It risks whether I can maintain:
- work
- parenting
- functioning Even though all of the invisible challenges are still there.
My support needs have evolved over time — but they have been consistent.
And the anxiety of losing that, or losing a significant part of that, is real.
That’s what isn’t being understood.
Where Government, the NDIS and Other Systems Are Getting
It Wrong
And this is where systems are getting it wrong.
There’s an assumption that if someone can speak, or work, or communicate well sometimes, then they must not need as much support.
That’s not true.
It’s actually one of the most harmful assumptions there is.
What “Functioning” Actually Hides
I am profoundly Deaf, and I can speak.
But I can speak because that was the only option my parents were given when I was a child.
I didn’t start accessing Auslan until my late teens.
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I’m not fluent in expressing myself through Auslan in complex situations. Processing my thoughts into accurate signing can be difficult for me, especially when I’m already overwhelmed or exhausted.
And I have not had the capacity to work on this more, because learning new skills when I am overwhelmed and trying to cope day to day can feel impossible.
But I can understand Auslan signed to me, and it makes a significant difference to my capacity to participate in many situations.
For example:
- where there are multiple people speaking
- if I cannot see the speaker, which removes my access to visual cues and lipreading
- or when I need to take off my cochlear because the noise is too much and I am exhausted from lipreading
Accessing Auslan interpreters through Video Remote Interpreting, or VRI, at these times enables me to continue participating as best as I can.
But VRI does not work for everyone.
Not every Deaf person can lipread.
Not every Deaf person uses Auslan.
And not every communication style works for every person.
This is just my experience and what I need.
It is one example of what invisible “adjustments” and “supports” can look like in real life.
If this access is reduced, then my participation is reduced.
If there is a “standardised” approach to planning, this completely ignores the fact that the same disability does not equal the same needs or the same supports.
Everyone is different.
Supports must be tailored to:
- what works for the person
- their life
- their environment
- their needs
- and any other compounding factors affecting them One of the biggest misconceptions is that if someone can speak, articulate well, or communicate effectively at times, it means they have lower support needs.
That’s not true.
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What people see is what’s visible.
I can speak… and still miss critical information.
I can communicate well… and still experience overload.
I can articulate clearly… and still shut down.
I can present as capable… and still need significant support.
What people don’t see is what it takes to make that possible.
Because what looks like “functioning” is often masking.
It’s:
- preparation
- compensation
- pushing through — over and over again And when that’s what people are seeing, they assume less support is needed.
When in reality, it’s often the opposite.
Lipreading, captions, and spoken communication do not remove the access barrier.
I still:
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miss words
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lose context
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scan constantly for visual cues
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struggle to identify where voices are coming from And I often need:
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transcripts
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written information
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communication support
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Auslan That communication effort is constant.
And it is exhausting.
What People with Disability Are Hearing Right Now
And this misunderstanding is invalidating so many people right now — Deaf people, neurodivergent people, people with psychosocial disability, and people with invisible disability.
Especially in the context of these proposed reforms.
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Because what many people with disability are hearing is:
- less support
- less community access
- more reassessments
- more pressure to repeatedly prove permanent disability
- more systems to navigate — systems that are already inaccessible People are already struggling.
Right now.
The Reality of Disability and Support
The real truth is this: my disabilities are permanent.
What changes is not whether I am disabled.
What changes is:
- how much effort it takes to function
- how much support is needed
- how much recovery time is needed
- how much adjustment is required
- how much strain is happening behind the scenes That distinction matters.
It really matters.
Because right now, systems are interpreting survival as evidence that we need less support.
But the reality is:
- many people are only surviving because of those supports
- and sometimes it’s not even “surviving”
- it’s barely holding on
What Happens When Supports Are Reduced
Supports are what allow people to:
- work
- parent
- stay regulated
- stay connected
- keep contributing Page 6 of 10
Without them, the cost doesn’t disappear.
It just shifts:
- onto families
- onto children
- onto relationships
- onto hospitals
- onto crisis systems
- onto exhausted people with disability And that is not a plan.
That is not reform.
That is harm.
A Gap That’s Often Overlooked
There’s something else that is almost never talked about — especially for women.
Hormones and life stages.
I’m in late perimenopause, and it has significantly increased the impact of my disabilities.
My:
- executive functioning is worse
- sensory tolerance is lower
- fatigue is higher
- recovery is slower That doesn’t make my disability temporary.
It changes the severity.
It changes whether functioning is actually sustainable.
And this is a major gap in how disability is understood.
Because people assume functioning should stay stable across life.
But for many women — especially neurodivergent women — burnout, hormones, stress, parenting, and unstable supports can significantly intensify disability.
And a lot of women are quietly drowning while still trying to look “functional enough” to get through the day.
And honestly?
That’s me sometimes too.
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The Invisible Labour of Communication
Even communicating something like this takes an enormous amount of effort.
I’ve had to think about how to say this — a lot.
Many people with disability are constantly:
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translating ourselves
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trying to be understood
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trying not to be dismissed Trying to get the wording right:
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not too emotional
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not too much
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not too little Just enough to be taken seriously.
That labour is invisible too.
I’m Not Against Change
I’m not against change at all.
I support sustainability.
I support reform that actually works.
I support a functioning economy.
I work.
I employ people.
I contribute professionally.
I’m also actively involved in trying to improve systems — to make them more accessible, more connected, and less fragmented.
Because we don’t need more crisis.
We need better design.
Why These Reforms Must Pause
I’m asking Government to pause these reforms until there is a clear, accessible, and properly designed plan in place for what comes next.
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Because right now, there is no clear pathway explaining how people will safely navigate what replaces their current supports.
There is no clarity on how people are expected to coordinate across:
- multiple systems
- different programs
- services that already don’t work well together And while the intent might be good, in reality, navigating across silos, different eligibility criteria, and disconnected systems is not simple.
It is:
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complex
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exhausting
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often not accessible Especially for:
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people with communication barriers
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people with trauma
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people who already struggle to trust systems enough to engage with support And in regional and remote communities, where:
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services are limited
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communication can already be a barrier
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trust takes time to build this doesn’t just create inconvenience.
It creates real gaps in support.
This kind of change cannot be rushed.
It needs:
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careful planning
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proper consultation
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input from people who live this every day
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input from professionals who work in it every day Because support only works when it is:
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accessible
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coordinated
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trusted And that takes time.
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I’m asking Government to genuinely listen to people with lived experience before changes are implemented.
To protect essential supports while changes are being considered.
And to make sure any future system is:
- accessible
- coordinated
- safe
- designed with people with disability — not just for them This is not only what I have lived personally. It is also what I see repeatedly through my work, my advocacy, the people who reach out, and the communication barriers that keep surfacing again and again.
The problem is not isolated. It is systemic.
And too often, the greatest burden falls on the people already using enormous energy just trying to keep functioning, participating, communicating, and holding everyday life together.
Because many people are already surviving right at the edge while looking “fine” from the outside.
And when systems misunderstand invisible disability, communication barriers, and the hidden cost of functioning, they do not just risk inconvenience.
They risk pushing people past capacity — at the cost of health, stability, participation, families, and sometimes lives.
Fiona Fonti
18 May 2026
This is my experience, and I am one person — not everyone. We all have unique needs, even if “labels” are the same.
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