ACT for Autism

Changes to the law have weakened appeal rights under the new system.

If your plan isn’t enough, it may be harder to get it fixed.

That’s not strong protection.

People with disability need real rights to challenge decisions and get fair outcomes.

Read more: https://everyaustraliancounts.com.au/new-framework-planning-what-we-know-so-far/

[Image description: Red textured background with a white panel. Warning icon at top. Text reads: “New Framework Planning: What We Know So Far. Harder to appeal unfair decisions.” Every Australian Counts logo at bottom.]

Mark Butler MP
Jenny McAllister
Senator Jordon Steele-John
Melissa McIntosh MP
NDIS National Disability Insurance Scheme

Heading to the Perth Children's Hospital?

Our Hospital Support team are here to help!

From Monday to Friday, 9am – 4pm, our team is on-site at the hospital and ready to support you wherever you are on your journey.

If you’re waiting between appointments, have questions, or need guidance navigating the world of disability, you’re welcome to stop by the Kiind office during your visit.

Our team can offer families:

💜 Emotional support
💜 Emergency care packs
💜 Practical guidance on NDIS, carer and financial supports, education and more
💜 Accessible information resources
💜 Connection to other families

📍Find us on the Ground Floor in the Family Resource Centre.

For more information about our Hospital Support Program, please visit: https://bit.ly/46kgNCY

Thank you so much to Telethon7 Perth for supporting this program.

Why Does the NDIS Feel So Hard—Even When the Need Is Obvious?

A friend asked me recently:

“Why is it so hard for families like yours to get support from the NDIS? Surely in your case it should be straightforward?”

And on the surface… yes.
It should be straightforward.

Severe autism. High daily needs. Safety concerns.
Not exactly a borderline case.

And yet, like many families, we’ve found ourselves deep in reports, applications and reviews—still somehow needing to prove that help would, in fact, be helpful.

⸻

It’s Not Actually Based on “Need”

Most people assume the system works like this:

More need → more support.

Simple. Logical. Almost suspiciously reasonable.

But the National Disability Insurance Agency doesn’t fund based on how hard things are or how obvious the need is. It funds based on whether something meets the legal definition of “reasonable and necessary.”

So instead of saying, “Here is our situation,” you’re effectively saying:

“Please find attached Exhibit A through K, cross-referenced against subsection 34(1)(a).”

⸻

You’re Not Just a Parent Anymore

Accessing support means gathering assessments, therapy reports, behaviour reports and specialist letters—ideally written in fluent NDIS.

They can cost thousands of dollars.

Which creates one of the more unusual features of the system:

you often need funding… to prove you deserve funding.

It’s a bit like being asked to submit architectural plans before being approved to build a tent. Every year.

⸻

The System Doesn’t Really Do “Obvious”

“Obvious” turns out not to be an accepted category.

Even when needs are significant and visible, everything still has to be documented, justified and carefully phrased—clear enough to be compelling, but not so urgent it starts to sound like your child should be removed from your care while you get taken away by the nice people in the white coats

Because decisions aren’t based on what seems clear. They’re based on what can be evidenced on paper.

⸻

Meanwhile, Everything Around It Is Thriving

There is no shortage of activity around the system.

Therapists, support workers, coordinators, plan managers, report writers—many of them excellent, and absolutely needed.

But it can sometimes feel like a lot of money is being spent… just not always in ways that make Tuesday afternoon easier.

There’s even something of a “report economy,” where thousands of dollars go toward explaining, in increasingly sophisticated language, that things are still quite hard.

⸻

The Gap No One Warns You About

There’s a quiet gap between real life and what the system can recognise.

Families live one. The system processes the other.

And somewhere in between, you find yourself translating:

“I haven’t slept properly in years”
into
“functional impairment across multiple domains.”

⸻

So Who Is Benefiting?

At some point, most families wonder where all the money is actually going.

There isn’t a single villain. It’s a system trying to create a market, control costs, ensure fairness and avoid being taken advantage of—all at once.

The result is something very structured, very careful… and often very hard to access.

⸻

The Reality for Families

What looks like support often feels like managing professionals, coordinating services, commissioning reports and persistently advocating—while still parenting a child with significant needs.

So yes, technically we have “support.”

It just comes with a side role as coordinator, administrator, researcher and part-time legal representative.

⸻

And Then—Plot Twist

Let’s say you succeed.

You gather the reports, learn the language, submit the evidence—and you get the funding.

Amazing. Life-changing. System working as intended.

Except… now you have to spend it.

Which sounds simple.

Until you realise it’s less “here’s some support” and more “welcome to your new part-time job in administrative gymnastics.”

Want to use a great therapist who isn’t NDIS registered?
No problem. Just become self-managed, learn some accounting, navigate the portal, upload invoices correctly and hope you haven’t breached a guideline that seems to have been written in interpretive dance.

And the funding itself isn’t just money—it’s very specifically categorised money.

So you might have funding for one thing, while the support you actually need sits just slightly outside it.

And suddenly you’re wondering:

Is this therapeutic?
Is this capacity building?
Is this… allowed?

Meanwhile, your child still needs the support. Immediately. Obviously.

So yes—getting funding is one battle.

But using it in a way that actually helps your child?

That’s the sequel.

And honestly… it might be worse.

⸻

Final Thought

The issue isn’t that families are asking for too much.

It’s that even when the need is obvious, the system requires you to prove it—carefully, repeatedly, and preferably in PDF form—before it responds.

And then, once it does, you need to become just qualified enough to use it correctly.

And that’s where things start to feel less like support…
and more like a process you have to get very, very good at.