Julienne Verhagen spoke last week with the World Socialist Web Site about the Albanese government’s $36 billion cut to the National Disability Insurance Scheme (NDIS). Labor’s measures will drive at least 300,000 people off the scheme by 2030 through the replacement of diagnosis-based eligibility with “functional assessments,” the imposition of a 16 percent reduction in social and community participation programs, the removal of thousands of autistic children from the NDIS and other brutal cost-cutting measures.

Verhagen is a highly skilled disability support worker and a full-time family carer with years of experience in disability service management, including involvement in the hiring and training of support staff. She is also the author of The Power of Interactive Care: Breaking the Mould of Traditional Disability Support. The following interview was edited for brevity and clarity.

Richard Phillips: Labor’s attack on the NDIS has been building for some time. What were you expecting, and what was your immediate response when Health Minister Mark Butler made the announcements?

Julienne Verhagen: I didn’t know exactly when it was going to be announced, but I wasn’t surprised. The government and the media have been going on and on about the NDIS being unsustainable and making all sorts of false allegations.

All the rhetoric about the NDIS being too big, and that we shouldn’t have children or people with milder disabilities on plans, is false and despicable. How dare they blame the disabled and put even more pressure on families who are already doing everything they can!

I’m a full-time carer for my sibling, who has severe and complex disabilities—he’s quadriplegic and blind—and cannot do anything for himself. And yet the NDIA [National Disability Insurance Agency] absolutely gutted his plan, so I’ve seen how the system works and what happens when you challenge its decisions.

The NDIS was designed to ensure that providers made a profit and that services were made available for people with disabilities—support workers, disability housing, speech therapists, occupational therapists, and others willing to develop those resources. This wasn’t meant to be a temporary measure to get the system started, but was built into the system itself, with the promise of reasonable profit margins of maybe 10 or 20 percent. Instead, we now have inflated provider rates, overpriced equipment, and ballooning profit margins.

We spend thousands of dollars a year on my sibling’s pads, urine bags, and so on. If we order them through NDIS-accredited suppliers, they cost at least 30, sometimes 40 percent more than if I ring the same company with the same order and say I’m a private customer paying by credit card. I then send the invoice to the plan manager and get reimbursed. We also buy special chemical-free soaps and handwashes, which he must have, from Coles supermarkets for much less than through NDIS medical suppliers. There are many other examples of this sort of thing, and it also applies to medical equipment, beds, wheelchairs, and so on.

Government concerns about efficiency are laughable, especially when considering that the privatisation and profit-gouging model will remain in place. And things will get much worse under “functional assessments,” which they’re planning. This will be a tick-box or AI-based process and will lead to more wrong decisions that people will have to fight.

The public should know that 78 percent of tribunal decisions involving the NDIA have been reversed, settled, or otherwise changed in favour of the participant. The NDIA’s legal spending at the tribunal was $75.4 million in the past year, with about $60 million spent on external law firms in 2024–25. Yes, there are people who try to milk the system, but rarely on the scale they claim. And there have only been about 25 successful fraud prosecutions, all of them involving providers, none of them involving people with disabilities.

My family spent nearly two years in tribunal hell fighting a brutal reduction in the care plan for my sibling. The reduction would have made safe daily living impossible for him. I was grilled on the witness stand for nearly three hours by a QC. No expense was spared by the NDIA in trying to stop us from winning back physiotherapy, home support, and other essential needs. We had to fund reports, legal representation, endless conferences, and mountains of evidence just to secure the support he needs to survive. We eventually won, but the emotional and financial damage was enormous, and we had to take out a second mortgage to pay the lawyers. It took five months before the NDIS implemented some of the gains we won during the case conference process.

RP: What will be the impact of the government cuts on those removed from NDIS support?

JV: It will be disastrous for tens of thousands of people, including workers in the sector. Without exaggeration, my sibling’s life is threatened if he doesn’t receive NDIS support. It won’t just be his quality of life or mental health. The most likely scenario is that he would be fed incorrectly, aspirate, develop severe pneumonia, and die. It’s that simple.

RP: The government claims those with so-called lesser disabilities will be transferred to other programs.

JV: That’s nonsense. Proper programs take years to develop. What it really means is that the burden will fall onto families, creating even more physical, mental, and financial pain. The government and the media are trying to cover up all this by demonising those on the NDIS, and if you’re not in the disability sector, you might believe it.

The government wants to slash community participation programs, but these are essential. On March 15, the public was told the NDIS spends $12 billion on things like walks, movies, and haircuts, as if the money disappears. But this money pays workers and circulates in the economy. Studies have found that for every $1 spent, around $2.25 is generated in economic activity.

I’m incredulous that this is happening under a Labor government. At a time when everyone is struggling with rising petrol prices, rents, and the cost of living, scapegoating and demonising the disabled—the most vulnerable people in society—and shutting down community programs is despicable. It’s treating the disabled like pot plants—fed, watered, and occasionally cleaned, but not truly living.

There’s a difference between being alive and having a life. Having a life means access to the community—interaction, relationships, and meaningful activity. If you’re denied that, it’s like being taken back to the conditions of the 1950s and 1960s: segregation, invisibility, and greater risk of abuse and neglect. My family member would not be alive today if he had been born 20 years earlier. Even in the 1970s, people with cerebral palsy were still dying because the government would not provide enough money for basic support.

Don’t get me wrong, there are lots of problems with the NDIS, but it has meant freedom for thousands of disabled people and has been instrumental in giving my family member a life. For the government to suddenly declare it is going to fix the NDIS is like trying to fix a plane while it is in the air and full of passengers. If you were really going to fix it, the first thing to do would be to land the plane and then get the passengers off safely.

We should be investing more money into disability, mental health, aged care, and other social needs. You really do get your money back when you invest in the people in our community who need help.

The government claims that it has no money, but there is plenty of finance for AUKUS submarines and other military spending. We get nothing back from defence spending, and why aren’t the incredibly wealthy gas companies and other big corporations paying tax? It’s outrageous.

RP: Have you heard anything from the unions about the NDIS cuts?

JV: Not a peep.

RP: What’s been the response from the community to the government’s attacks?

JV: Obviously, there’s a lot of anger, but also fear about what’s coming and the dangers of Trumpism and the attacks on social welfare throughout the Western world. Attempts to portray the disabled as blood-sucking people who do not need anything, or who are trying to rort the system, are appalling. It’s Nazi Germany-type stuff, where you blame the weak for all of society’s ills.

We really need those who are not down in the trenches to get up and fight for us. That’s why we need organisations like yours, pushing out from the grassroots and getting everybody involved. This is not just a disability issue. Supporting people who cannot support themselves is in the interests of all of society.