If this Is ‘Sustainability’ Why Does it Feel Like Burning It to The Ground?

Why is fixing the NDIS so damn hard?

About a week ago, I tapped out. The endless debate about the NDIS had consumed every spare spoon I had left — between running a masterclass, parenting, recovering from a virus, and trying to keep my business afloat, I couldn’t hold it all anymore.

I told myself I’d just take a short break, and when I came back, things would be… well at very least, the same.

But they aren’t. Somehow, they’re worse.

They’re not just coming for kids anymore

It’s not only children being pushed out of the NDIS now.
It’s people with psychosocial disabilities too.

And I just don’t get it.
I actually had to check the date to make sure I hadn’t time-travelled.
Because the level of discrimination I’m witnessing right now toward people with invisible disabilities… I haven’t seen it in my lifetime. I’ve read about the human cost of this kind of policy, but I never thought I’d watch it unfold like this, here, now.

I don’t understand how anyone can look at the mountain of evidence about what happens when people with disability lose support — the trauma, the hospitalisations, the long-term costs — and still choose this.

I don’t understand how anyone can look at the chaos this is causing, the distress, the confusion, and the sheer human cost… and call it reform.

The Myth of “We just can’t afford it”

I get the theory. I grew up in conservative inland Queensland and NSW. I was raised with a firm understanding that the books have to balance first. I also, worked within government systems after mass redundancies, clearly understanding that I had to prove my value to the budget.

I understand that social policy needs funding to work.

But the narrative that ‘we just can’t afford it’ isn’t covering it for me anymore - not when the systems we do have aren’t working efficiently, not when those in charge don’t even follow their own rules, and not when politicians keep pointing fingers at each other, while failing to do the job they were elected for.

What I see is - Power. Money. Corruption .

And in the end, it’s everyday Australians who get screwed.

Yes, our social welfare, health, mental health, and education systems need reform. No one’s arguing that.

But how is this the solution?

How is taking already-vulnerable people — people who find change dysregulating, who carry trauma from the very systems meant to help them — and ripping their supports away, with vague promises of “something” to catch them (something that doesn’t even exist yet), supposed to help anyone?

It makes no sense.
Because it isn’t sense.
It’s politics.

The Deafening Silence

As one autistic person who has worked across health, education, and disability — and who’s lived through the cracks of these systems — the NDIS once felt like hope. Like someone was finally going to catch people like me.

But it came too late.

If only I’d been picked up at 17… or 18… or 21… or 23… or 25… or even 27. Instead, I got missed. Like so many do.

So when I say this reform is dangerous, I’m not speaking as an outsider.
I’ve seen the gaps.
I’ve fallen through them.
I’ve spent tens of thousands trying to climb back out.

And what I don’t understand is this: why aren’t they listening?

Even the Politicians don’t know what’s happening

It baffles me - the silence. It’s deafening.

This isn’t news to them.
The disability community has been screaming.
Families are begging.
Providers, advocates, and allied health professionals are all waving giant red flags.

And yet: nothing

In the past three months, I’ve met with multiple politicians. None of them knew what was happening in the NDIS space. Not the flow-on impacts, not how these changes will hurt people.

They aren’t briefed on the details.
They don’t see the ripple effects.
They aren’t living it.

It’s smoke and mirrors. An illusion of care.

Even Ali France posted this week about how the NDIS must be “sustainable” — and yes, sustainability matters — but how are they not seeing what so many of us can?

Or is it that they do see it, and they’re just hoping the country keeps buying their version of the narrative?

So … What’s the Motive?

Maybe this is what disturbs me the most about all of this.

If this was truly about sustainability, there would be transparency.
There would be data.
There would be co-design.
There would be actual support in place before funding is stripped away.

Instead, there’s secrecy.
There’s spin.
There’s carefully curated numbers that don’t match what’s happening on the ground.

We can keep asking for the real information, the real data, the release of reports and the unbiased stats… but the question I’d rather know is: why?

Where there’s smoke, it usually suggests fire.

If there’s something to hide, and the disability community is losing… who is winning?

Because someone always is.

No More Lip Service

Does it really need to be this complicated?
Do we really need another parliamentary inquiry?
Another round of “consultation”?
Another report that goes nowhere?

Or do we just need our leaders to actually do their jobs?

I don’t think it’s wrong to want systems to be sustainable - I want sustainable systems!

But this isn’t how you do it.

You don’t fix broken systems by breaking people.
You don’t heal trauma with bureaucracy.
You don’t build trust by ignoring the very people you claim to serve.

This isn’t reform.
It’s erasure.

And I’m tired of pretending otherwise.