4 hours ago
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April 10, 2026 — 5:00am
Over Easter, my sister Caroline and her daughter Mattea came and stayed for a few nights in Canberra. Mattea is like most three-year-olds: boisterous, bursting with energy, constantly talking and demanding attention from her three older cousins.
Mattea is also not like most three-year-olds: from the moment she was born, her parents have had to grapple with a complex set of problems that make life very, very different.
After years of appointments with an army of specialists, Mattea was diagnosed a year ago with Jansen-de Vries syndrome, a rare neurodevelopmental disorder first identified in 2017, the many symptoms of which include intellectual disability, speech delays, anxiety, and feeding, drinking and gastrointestinal difficulties. Mattea receives significant support from the National Disability Insurance Scheme.
Almost from the moment the NDIS was brought to life by the Gillard government in 2013, there have been complaints about the size and cost of the scheme. It costs the government about $50 billion a year and has about 760,000 participants. It’s growing at about 10 per cent a year, which means it will cost more than $100 billion annually by the 2030s.
It is one of the federal budget’s five most expensive items and easily the most expensive social program. In recent years, each May budget has been a cue for Liberal and Labor governments to promise crackdowns on spending, stop the rorts and tighten the rules to stop people being overcharged for everything from physical therapy to wheelchair cushions.
Also, over Easter, my colleague Natassia Chrysanthos published a series of stories about the NDIS and how in the coming budget, Health Minister Mark Butler will look to cut the scheme’s growth rate to about 6 per cent a year to deliver needed savings.
Teal MPs led by doctor-turned MP Monique Ryan have warned the government off major changes until other supports, such as the nascent Thriving Kids program, are up and running. But two Labor MPs who are also doctors, Michelle Ananda-Rajah and Mike Freelander, back reining in the cost of the scheme while the peak industry body National Disability Services has told its 1000 member organisations that big changes are coming and “this moment should be embraced”.
All of this sounds perfectly reasonable.
As far as Caro knows, her daughter is one of five people in Australia to have been diagnosed with JdVS. The Facebook support group Caro joined for JdVS families around the world has about 200 members. Worldwide, the syndrome has been identified in just 26 countries, though there are almost certainly others who have it but have been misdiagnosed with another disability.
Other symptoms of JdVS include global developmental delay, chronic constipation, chronic vomiting, low muscle tone (known as hypotonia), growth hormone deficiency, small hands and feet, poor vision, poor fine motor skills and hypersensitivity to sound. Mattea has now also been diagnosed with autism and ADHD, though she is too young for the medications that could help her.
It is not yet known whether people with JdVS live shorter lives because identification of the syndrome is so new.
My little niece has every one of the above-listed symptoms other than chronic vomiting (though, as Caro remarked half-jokingly one night, there is still plenty of time for her to develop that).
The NDIS was built for people like Mattea, though she doesn’t receive her funding because of JdVS. Again, as the syndrome is so new, it isn’t specifically recognised by the scheme. Instead, her development delays and intellectual disability are what qualify her. She receives a high level of support now, at a critical stage when early intervention can make a big difference, but when she reaches six, her funding could drop unless it is judged that she still has a significant intellectual disability. If she had qualified because of her autism, much of the funding would be cut.
You’d think that, with her list of symptoms, Mattea would not be affected by changes to the NDIS. She probably won’t be, but there are no guarantees of support. Most years, she is reassessed by the NDIA, as are many users of the scheme. That can cost my sister dearly, as each of her four specialists charges about $1000 per letter to support her remaining on the scheme. Her support team of specialists meets four times a year to discuss Mattea’s conditions, which costs another $800 per meeting.
It’s an expensive way to confirm to the NDIS that Mattea does, in fact, have the same condition she was born with. And surely this bureaucracy could be pared back?
At the moment, my sister estimates the cost of all that care and all those specialists is about $100,000 a year, of which the NDIS pays less than half.
Mattea can feed herself (mostly) by hand, but not with cutlery. She struggles to drink from a sippy cup because she chokes on all liquids, so she drinks thickened water. She is tiny of stature and still wobbly on her little feet, but she’s getting there. And while she has a vocabulary of about 100 words, most of them are hard to understand unless you listen closely, or you can see the context of what she is saying or asking for. You’d think, with that list of burdens, Mattea would be living a miserable existence. And yet, she is one of the happiest kids I’ve met.
There is certainly a burden carried by my sister and her husband: frequent specialist appointments, trips to the emergency department at the Royal Children’s Hospital in Melbourne and 15 hours of speech, occupational, physio and behavioural therapy every week. The NDIS money makes a massive difference to Mattea’s life, just as it does for all, or nearly all, of the scheme’s participants.
The federal government is right to crack down on rorts, dodgy operators and waste in the scheme, which has already cost taxpayers billions. It is also correct that the scheme’s current growth rate and cost are not sustainable. But every time a politician complains the NDIS is a rort, or too costly, or argues that too many people with autism with lower support needs – about 40 per cent of participants – are using the scheme, they should stop and take a breath.
Because they aren’t just talking about people with less severe needs, who may need less support – they’re also talking about kids like Mattea who, even with her complex disabilities, are not guaranteed the funding they need to keep developing skills the rest of us take for granted.
Over the long weekend, I got a brief snapshot of how much extra my sister has to do to care for her daughter. Having not seen the family for a couple of months, it was a stark reminder of the challenges they face. I also discovered which new words Mattea had learnt in speech therapy. She can now say Carlo, Sabina and Giacy, my three kids’ names, and she was in her element chasing them through the James Turrell sculpture at the National Gallery.
But the best bit was adding two more words to her vocabulary – “Maxy goal!” – after the Melbourne captain kicked one, to the horror of Mattea’s Collingwood-supporting dad.
Mark Butler does need to cut back the NDIS. It must be fiscally sustainable. But he should do it with a scalpel, not a chainsaw, and remember it needs to be done with the best interests of the people who use it in mind, not just the bean counters.
James Massola is chief political commentator at The Sydney Morning Herald and The Age.
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