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An insider who spoke on the condition of anonymity out of concern for their livelihood said NDIA staff have been directed to use an internal practice guide for determining how many hours of therapy children need. But they’ve also been directed not to speak publicly about the guide.

What happened then was incredible. I spent longer talking to the lawyer, the NDIS’s lawyer, the lawyer I was opposing in the tribunal, about my daughter’s needs than I have ever spoken to anyone employed by or working for the NDIS, about her needs.  That is, or should be, a damning statement.

“No one is talking about the [more than] 85 per cent of people with disabilities who aren’t on the NDIS and many of those people are struggling to get the services and supports they need to live ordinary lives,” Professor Kavanagh said.

The NDIA has introduced a new plan review process. Instead of each participant attending a scheduled plan review when their plan is due to end, they will now receive a phone call to participate in what the NDIA calls a Participant Check-In. During this call, the NDIA representative will discuss the participant’s well-being and see if their supports are meeting their needs.

“We went to the AAT last time to actually obtain adequate services for him. Then 12 months later, at the review, the services then deemed “reasonable and necessary” by the tribunal were slashed. We’re now looking ahead and saying does this have to happen every year?”

Both sides of politics remain fully committed to the scheme, publicly, amid fears of another “mediscare”-like campaign. The scheme’s participants and the large diaspora of carers and their families are a potent political force and have been rallying to ensure the scheme remains supported.

“It’s obviously very topical at the moment,” Reynolds said. “I think the context of this is really important … Remembering we’ve got half a million people now on the scheme, the overall percentage of people who are going through to the AAT appeals process is still minuscule.

Kerriene Minjoot never felt like her blindness was a barrier to her succeeding at work, until she joined the very government agency tasked with improving the lives of Australians with disabilities.  “I did not expect to go into working at the National Disability Insurance Agency (NDIA) and ending up feeling more disabled than I ever have before,” she said.

Many have been forced to close their books. Waiting times for an AAT decision have blown out.  “It’s more like civil litigation, going up against lawyers,” says Toby’s advocate, Belinda Horne, who notes she is not a trained lawyer. “Like if I had a broken arm, I could go to the doctor and show up. I don’t have to go to a solicitor.”

“Our policy on the NDIS is to defend and fix the NDIS, lifting the NDIA staffing cap, doubling existing funding for advocacy, fixing regional access and stopping waste… it’s to put people at the centre of the NDIS,” Albanese said.

“It’s been so difficult historically for people with disability and families to get heard and be treated like their concerns are worthy and important enough to consider”

Functions which were to be conducted by staff with delegations could not be outsourced: delegation for decision making remained within the agency. Processes as well as functions needed to be broken up. Outsourced functions would be information gatherers and information givers, ruled by KPIs. These KPIs would become problematic.

the NDIS is a microcosm of so much that is wrong with the way we deliver services across the care economy from disabilities, to aged care, to health care and education. It is sucking up and revealing the shortcomings of the rest of our social services.