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At times of extreme dysregulation, I turn to the safest of safe foods: a particular frozen cheeseburger that has changed its recipe once since last century. I knew it was time to throw one in the microwave when the federal health minister, Mark Butler, began wrapping up his address to the National Press Club on the topic of “reforms” to the national disability insurance scheme. For those playing along at home, this need for a safe food is because my functional capacity is adversely affected by the abject terror that accompanies the idea of savage cuts to the NDIS – and on Wednesday those fears turned out to be well founded.

In the pleasant words of the ABC’s headline: “More than 160,000 people to be kicked off NDIS as government overhauls eligibility test.” We have to do it, so the general vibe of Butler’s address ran, because the NDIS’s “social licence” is in the gutter. Panic among NDIS participants and their families was widespread and is ongoing. People With Disability Australia immediately launched a campaign against the cuts.

As Butler spoke of “standardised, evidence-based assessments” and “new eligibility rules” for NDIS participants, my head spun. Which evidence? Will there be one standardised assessment for each so-called primary disability? How do you account for the ways in which people’s disabilities may differently affect the various domains of their life? Does the government understand the very notion of a lifelong disability?

I’m very familiar with the dreaded functional capacity test; as an autistic NDIS participant I’ve flunked a few. Even in the best-case scenario (that is, carried out in the home, with a caring occupational therapist) these tests are draining, can contribute to poor self-worth and perpetuate a deficit lens. The thought of every NDIS participant having to potentially do one yearly, conducted by a random pen-pusher continually glancing at their official “standardised, evidence-based assessment” folder, fills me with dread.

Particularly devastating was the announcement of cuts to participants’ social and community participation budgets. As the name suggests, this is the funding that helps disabled people get out and about. During the Q&A, Butler put on his serious face when he gravely intoned that cutting this funding is “a hard decision but it’s the responsible, the right decision for us to take as a government”. Is it, though, Mark? Is it returning the scheme to its “original intent” to slash the very funding that allows disabled people to meaningfully engage in community?

To be clear, some of what Butler announced is overdue. Yes, it’s a good thing to address the issue of shonky providers, third-party money sinks and “support” workers who shove their clients into a mall food court and then play Candy Crush. More oversight of providers whose workers are engaged in higher-intensity support is a good thing, provided it doesn’t lead to mandatory registration for all support workers (many participants, particularly those living regionally, have expressed concern about not being able to use existing, trusted support teams if this were the case). It was good to hear him give detail about some of the so-called “cost blowouts” that parts of the media (and consultants employed by Labor) have used as a boogeyman to spin NDIS cuts.

Despite this, all afternoon, I kept returning to the moment, early in his address, when Butler assured the assembled press that “reforms that go to the nature of the scheme and the type of supports it delivers should always be framed by the commitment: ‘Nothing about us, without us!’”

No doubt Butler thought that by prefacing the announcement of his devastating cuts by spouting the disability community’s treasured adage, he is winning our hearts and minds. I’ve seen that movie before, Minister. Indeed, I have a PhD in the types of films where characters who enthusiastically declare themselves allies of a particular community generally have a mask-rip moment in the third act.

Hearing those words tumble from the lips of the man in charge of swinging the axe only added insult to injury. We know that the NDIS has been hamstrung by a general lack of co-design with the disability community, particularly when it comes to more recent cuts and reforms such as 2024’s NDIS amendment bill.

Through it all, I thought of those titans of the disability rights movement who are no longer with us: Alice Wong, Judy Heumann, Stella Young, and how the inclusive world they fought so hard for is in danger of being torn apart by ruthless, ableist bureaucracy. And I thought of all the potential “Judy Heumanns” and “Alice Wongs” and “Stella Youngs” in Australia who will no longer have the support they need in order to flourish; who will withdraw from society because their budgets have been cut; who won’t be able to enter the scheme in the first place; who now face an uncertain future.

Nothing for us, designed without us.

• Dr Clem Bastow is an autistic advocate and critical autism studies scholar