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When the System Stops Listening: Why the New NDIS Changes Hurt Neurodivergent Families

You might have seen the headlines or the handful of carefully worded political statements, but here’s the lived-in version of what the new NDIS changes actually mean: From May 19, 2025, all new and renewed plans are being delivered in monthly or quarterly instalments.

That means:

  • Families can no longer access their full plan upfront

  • You can’t book ahead

  • Support can’t be shaped around what you know your child needs


And maybe worst of all, unused funds don’t automatically carry over if your plan is renewed. They vanish.


Let me be really clear: this isn't just a minor admin shift. This is a structural change with very real consequences.


It’s families hesitating to book school holiday support because they’re not sure what they'll be “allowed” to access. It’s kids missing out on the therapists who best support them because you can't afford to wait six months to accumulate the funds. It’s parents filling out paperwork for the hundredth time, still second-guessing if they’ve done it “right” in the eyes of a system that moves the goalposts constantly. That’s what I did this week, and I still don’t know if I’ve done it correctly.


These New NDIS Changes Are More Than Red Tape

When you drip-feed access to support, what you’re really doing is stripping away agency. You're saying, “You can have help… but only in predictable chunks.” But neurodivergence is not predictable or linear. We know this. We live this. So why does the system continue to behave as if it doesn’t?


The Danger Of Ignoring Lived Experience

Families like mine — and yours — are full of hard-earned insight. We know what helps, we know what harms, and we know that one-size-fits-all models are rarely the answer. So when changes like this are rolled out without genuine consultation — without listening to the very people who live and breathe these supports — it’s more than frustrating. It’s disempowering.


At its core, the NDIS was designed to support people. Not ration care, gatekeep access, or reduce our children’s needs into quarterly quotas. It’s not just about therapy hours. It’s about trusting families to know what they need, and giving them the flexibility to access it when and how they need to.

Children and an adult play with colorful alphabet blocks on a blue carpet. Sunlight creates a warm atmosphere.

Every Brain Is Different — So Why Isn’t The System?

We say it often: every brain is different, but when the system ignores that truth, when it clings to neat, clinical timeframes and budget drops, it becomes clear that those making the decisions aren’t the ones doing the work on the ground. They’re not chasing support workers, trying to schedule therapy around school transitions, regressions, or burnout, holding their breath while waiting for just one spot to open up with the right therapist.


But we are.


And we need more than polite nods to inclusion — we need action rooted in reality. We need frameworks that adapt to people, not the other way around.

 
 
 

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