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My niece needs the NDIS. Yes, it must be cut – but with a scalpel, not a chainsaw
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- [00:04]
A
As our journalist James Masolo puts it, his niece Matea is like most three year olds, boisterous and bursting with energy. Mattea is also not like most 3 year olds. From the moment she was born, her parents have had to grapple with a complex set of problems that make life very different. I'm Samantha Salinger Morris and you're listening to the Morning Edition from, from the Age and the Sydney Morning Herald. Today, chief political commentator James Mussola on Australia's national Disability Insurance scheme and what next month's expected cuts to the scheme really mean. It's April 15th. James, welcome back to the podcast.
- [00:50]
B
Great to be here, Sam. Thank you.
- [00:51]
A
Now, you've just written a personal piece about how the government's disability scheme has really been a lifeline for your sister and her three year old daughter. So can you just tell me about your sister Caroline's journey to becoming a parent and her longed for daughter, your niece. Cause many of us have had, you know, longed for children, fought hard to have them. I know I have. But very few have had the experience that your sister has had after her daughter was born.
- [01:15]
B
Yeah, look, that's right. My sister and her husband tried for a couple of years. I mean, my wife and I had the same thing. It's not uncommon these days, Sam, is it? They eventually, Caroline, my sister, got pregnant with Mattea and that was, you know, obviously a great moment for them. But how do I put this? Almost from, well, from the very early months after she was born, it was, I think, clear that not everything was quite right with Matea in sort of a growth and developmental sense. She, you know, saw a range of specialists for the first couple of years. You know, Caro and her husband would be taking Matea to various specialists and what have you. And over time they sort of worked out a couple of things wrong. Like she can't kind of drink properly or close her mouth properly to drink properly, you know, from her sippy cup, things like that. So they identified little bits and pieces of things that weren't quite working. Eventually, some genetic testing was done and it was found that Matteo has a syndrome called Janssen de Vere syndrome, which is, which is only discovered in 2017. It's very rare at this stage. Cara was aware of there being perhaps five people in Australia who have it. You know, the Facebook group she's in, the worldwide Facebook group she's in has about 200 members, you know, sort of a support group if you like. And it's only been identified in 26 countries now. It's probably more widespread than that, but it's just, you know, sophisticated testing is required to diagnose it. Some of its symptoms include having an intellectual disability, delays in sort of speech, in walking, anxiety. Yeah. And difficulty, as I said, feeding, drinking and gastrointestinal issues. So it has an impact on the whole person. Um, and. And you know, really it has shaped or will shape Mate's life for the rest of her days.
- [03:05]
A
And you've written that your sister, and therefore Matea, received funding from the ndis, of course, to help support her. So what sort of funding does she get and how does it help Matea on a day to day basis?
- [03:17]
B
So she gets us, she gets a stack of different therapies. She gets OT occupational therapy, speech therapy, physical therapy. She has some work done on, I guess. Oh, well, yeah, it's behavioral therapy, I guess it's called, because she has trouble regulating her emotions sometimes because she gets frustrated, because she can't say how she's feeling.
- [03:40]
A
Okay, but you've written that even though the NDIS was actually built for people like Matea and her condition is severe, she's also, I think, believe got poor vision, poor fine motor skills. Like you've mentioned, feeding, drinking and gastrointestinal difficulties. She's also got intellectual disability in addition to autism and adhd. But that the funding she receives under the dis, even under its current setup, could either drop or be cut for various reasons. So how so? And why? Because on the face of it, like, as a lay person, this sounds nonsensical or even cruel.
- [04:15]
B
Yeah, yeah, Look, I mean, I don't think it's deliberately cruel, but it is nonsensical. And I'm only obviously relaying Caro's, you know, experience. It's, I'm sure, not necessarily the experience of everyone in the ndis. And I should say as well, Sam, I'm talking about Caro and Mateo's experience with. With their permission, of course. So what happens in the NDIS is you get your package essentially reviewed not every year, but most years. Some years they roll it over. It allocates a certain amount of money that you can use for those physical therapies that I mentioned before. You know, you could use them to get a support worker who's sort of highly trained to come in, I don't know, let's say three days a week or whatever it might be, and help Matea, or help Carol and Mattea and Vaughan, her husband, get her ready for school, those sorts of things. Do some of the therapy so that mum and dad can kind of get ready to go to work, those sorts of things. So in that sense, a tremendous help. It also Caro, she estimated that it probably cuts and it's a generous package. She didn't want me to say exactly how much, but it's probably covers less than half of what Caro and her husband are having to outlay each year, which is, you know, approximately sort of 80 to $90,000. NDIS covers less than half, which is great, but it's not everything. And in terms of the uncertainty and in terms of reviews, I mean, this year Cara was saying that they did roll over review, sorry, her package, and it was fine. But the preceding year she'd had to sort of go through the hoops and prove various things. Now, I think some of this is about integrity in the NDIs. Like there's this perception that no one's doing anything to monitor the system. That's not right. You know, NDIA staff are doing this work, but it doesn't necessarily seem to me to make sense in Mateo's case. But, you know, there it is.
- [06:04]
A
But there were some things that you wrote in your column that I thought, wow, because for one thing, you said that this incredibly rare syndrome that she's got that like you say, presents really whole person challenges, it's hard to imagine any parent being able to manage this without help, but that she actually isn't even getting NDIS funding because of this syndrome, because it's so new it isn't even recognized by the scheme, but rather it's actually her development delays in intellectual disability or qualify her. So you said she receives a high level of support now at this critical stage, of course, when early intervention can make a big difference. But you said that when she reaches 6, her funding could drop unless it's judged that she still has a significant intellectual disability. Now, that would seem, as a layperson, again problematic, because if her intellectual disability improves, let's just say, and it isn't as strong, her funding could be cut, even though she's got all of these incredibly severe challenges that are associated with this syndrome. So isn't this not good enough or what?
- [07:03]
B
In a sense, yes. I mean, look, she is as, as you just touched on, JDVS isn't covered, but it's a sort of global developmental delay category. So that means she's in pretty good shape until she's six. It's not specific to Matteo that her funding could go down once she gets to six. That's pretty. I think that's pretty standard for the scheme. I mean, the Other thing, and this is no knock on anyone, we don't know the extent of her intellectual disability like some JDVs kids have. It's almost impossible to identify that they've got it. You know, the syndrome, it's very mild. Some, it's less mild. Personally, you know, I see Cara, she's in Melbourne, I'm in Canberra, maybe once every two or three months. And so I see how many new words Matea's learned. She's maybe got a hundred now and you can pick them out. Oh, she can say my kids names now or oh, she can say this now. I'm an optimist and I'm hoping that she'll get, you know, much further down the track of developing her language, but we just don't know. And if, if, you know, if things don't go quite as we might hope, then, you know, I guess the converse of that is she's more likely to stay on the higher support plan going into the future. It's. So there's a sort of a general uncertainty there, some of which is NDIS related and some of which is just, you know, the vicissitudes of life, essentially.
- [08:21]
A
But you also wrote that if she had qualified because of her autism, because she's also got that, that much of the funding would be cut. So. Riddle me that, James.
- [08:29]
B
Yeah, so this is, I mean, autism and its coverage by the NDIS is very much in, or rather under the spotlight at the moment because about 40% of people on the scheme now have developmental delays, or I think it's called, I might get the term wrong, lower level autism. So it's not severe autism. And what the government has been saying, look, that's too many, that's hundreds of thousands of kids, we need to wind that back now again, it's simply the case that we don't know the level of severity of Matea's autism yet. So until she gets older, until they can actually calibrate that, it could be the case that she would lose a chunk of funding because she's judged to have only mild or moderate autism. But then as I said before, kind of counterbalancing that, there's the question of how big is the global developmental delay. So she might be covered under that stream, if not the autism stream. It's a bit, I mean this is the thing about the NDIs, almost from the moment it was born, became the kind of catch all and fix all for everything and states pulled back from providing some of the services in terms of ADHD and autism, for example, that they'd been providing for years and the NDIS became the thing that fixes everything. And it's not supposed to be that. And that's not to say that some of the people accessing are, you know, roaring the system or undeserving. I'm not saying anything like that. But it was meant for people with more severe disabilities. And that's what the government is grappling with now is how do we give that support to high needs people? How do we give it to low needs people? There's a program coming online called Thriving Kids, which will be state delivered, but partially, I think, federally funded. Funded, that's going to be for kids at the lower level on the autism spectrum that they're hoping will take some of the burden off ndis. There are so many moving parts here. It's a hell of a thing to try and get a handle on. But it's something that we do need to get a handle on because the cost of the ndis, it's one of the top five most expensive budget items.
- [10:27]
A
After the break.
- [10:29]
B
There are kids and adults and families affected by this and hopefully they, you know, cut with a scalpel and not with a chainsaw.
- [10:40]
A
Let's get into this because as you've just written, the Prime Minister has declared that the government is about to make changes to the ndis. And you wrote that he's actually just made the strongest comments yet on this count. So what has he flagged?
- [10:53]
B
So what the Prime Minister said, Sam, was that essentially the scheme has to be sustainable, it has to be affordable, and indeed that it risks potentially losing its social license if the government can't shape it into a more manageable expense on the budget, bottom line. Now, moving forward from that, Mark Butler has indicated it's going to be one of the major areas that they'll seek savings in the coming federal budget. He wants the scheme to stop growing at a rate of 10% per year and wind it back to 5 or 6%. Next week he's at the press club. He's going to outline some of the changes that he's making. And interestingly, the peak body for the disability sector, you know, the people who provide some of these services, has actually said to its members, this is a moment to lean into. This is a moment to embrace change. Like, you know, I think reading between the lines, what they're saying is they'd rather a Labor government was doing this work than a Liberal government. Perhaps maybe that's unkind of me to the Liberal Party, but that's. That was my interpretation of what they're getting at. So there will be, you know, we'll know more about what's being cut, what's being wound back, what's being reprioritised. I think it's next Thursday or next Wednesday at the press club.
- [12:02]
A
Okay, but let's get into, you know, for those who haven't been following this closely, because we know that people, bureaucrats, disability insiders, they've been wringing their hands over the NDIS for years. So can you briefly sum up for us? How bad have things blown out? How bad is the rorting and the frauding, which we keep seeing reports about? Has it just been badly managed? Something else entirely, because you've written that almost from the moment the NDIS was brought to life by the Julia Gillard government in 20, that there have been complaints about the size and the cost of the scheme.
- [12:35]
B
Yeah, look, that's right. The scheme now costs a bit over $50 billion a year. I think that's sort of roughly, not quite double, but close to double what it was estimated to cost at this point in time. The number of participants has gone. It's about 760,000 people. I think that's about 220,000, 250,000 people more than were expected to be accessing the scheme. It's projected to be costing over a hundred billion dollars a year by the early 2000 and 30s. Like, there is a. There is a bit of a problem there, if you. If you see what I mean, Sam, that is a massive amount of money. And then that's not to say that people don't need that help. Of course they do. That's the point of the piece about Matea. But the other thing that's been playing out is that there has been. Have been rather some rots. There's been allegations of criminal gangs getting involved in providing services through third parties, obviously. And that one of the chief knocks, I guess, against the scheme is once, you know, the claim goes that once, let's say a cushion for your wheelchair or whatever is certified as acceptable for the ndis. You know, you see the prices on it double or triple or quadruple. You know, there's complaints about physical therapists for kids, you know, kids learning to walk like my niece, costing sort of $150 an hour, whereas if they weren't accessing the care through the ndis might be $75 an hour or something like that. I'm sure those figures aren't quite right, but you get the idea it significantly more expensive. And then there's a question of accreditation. So this does seem to be something that the government's moving towards. It seems like. It seems likely there'll be more stringent guidelines for people to qualify as an NDIS provider. So you'll have to do a bit more bureaucratic paperwork, frankly. But the idea being that that will weed out some of the sort of misuse of funds, the rorts that are taking place and essentially bring a bit more stringency to how the program spends money.
- [14:28]
A
Yeah. And so. And why are some people within the disability sector viewing this upcoming federal budget as something like a D day for the ndis? Because I saw that one expert, Martin Laverty, he was on the first National Disability Insurance Agency Board, he now runs a large non profit provider. He told our colleague Natasia Chrysanthos that he thinks, quote, this is the last budget in which the Australian government can save the ndis. If we don't chart a course to cost correction, it will spiral and those that need the scheme the most will be those hardest hit when inevitably a future government needs to cut the scheme back. So first off, is this hyperbole or is there some truth that this could be the last budget for the government to save the ndis?
- [15:11]
B
Look, I think it's slightly, there's a, there's an element of hyperbole there. But I understand what Martin's saying is essentially if we don't do it in a kind of do it now in a careful, cautious and sensitive way, it will continue to grow and we'll get to a point where it really does need a chainsaw, you know, taken to it because it's just rising in cost so quickly. So I think that's where he's coming from. Do it now and do it the right way rather than letting it slip into disaster territory.
- [15:40]
A
And what would the chainsaw approach look like? Like if we're looking down the sticky end of again, because obviously so many governments arguably have not managed this, it has continued to blow out. It has been rife, reportedly with roaring, which is not helping any of us. So who will be hit hardest? I guess if this chainsaw approach comes
- [15:59]
B
in, it would, it would presumably be kids or people ra with the lowest or relatively speaking, the lowest need for these services. So you might see a, and I'm not saying this is going to happen in this budget because they're trying to avoid doing this, but you might get to a point where you suddenly say, right, anyone with autism is off the NDIs rather than the gradations. So, you know, if you're in sort of this category, you should do Thriving kids. And if you're in this category, you can get this much support, but not that much support. And if you're in this category, you get more support. It would, it would, yeah. I mean, it would be a blunt, to use another metaphor, a blunt stick approach, basically, rather than a nuanced and careful approach.
- [16:40]
A
And James, just wrap up, I guess. How are you and your sister and Matea feeling in advance? I mean, the budget's just coming down next month. Is, is Caroline very nervous?
- [16:52]
B
No, I think she's watching with interest, like most participants in the ndis. I mean, one of the, one of the things that really struck me about the piece I wrote last Friday about Mattea, Sam, was just how much feedback I've had from, you know, across the political spectrum, from our loyal readers and subscribers. Like, I've had dozens of messages and LinkedIn posts and what have you. It's been, it's been great. And people have been sort of saying, like, thank you for saying this. You know, we do need to course correct on the ndis, but we do need to remember that there are kids and adults and families affected by this and hopefully they, you know, cut with a scalpel and not with a chainsaw, as I said in the piece. So I think she's watching with interest. Yeah.
- [17:35]
A
It's so important and I'm so grateful to you and your sister for sharing, being, being happy to share her story and Mattea's story. So thanks so much, James, as always, for your time.
- [17:45]
B
Your pleasure, Sam. Thank you.
- [17:49]
A
In other news today, Qantas has flagged cuts to domestic routes as it grapples with up to $800 million in additional fuel costs due to the US Israel war with Iran. Harry and Meghan are in Melbourne again today. Harry heads to Western Bulldogs HQ for Movember and then travels to Canberra for a series of engagements at the Australian War Memorial, including a reception for Invictus, Australia. Follow our live coverage@the age.comau and smh.comau Today's episode of the Morning Edition was produced by Tammy Mills with technical assistance by Josh Towers. Tom McKendrick is our head of audio. To listen to our episodes as soon as they drop, follow the Morning Edition on Apple, Spotify or wherever you listen to podcasts. And to stay up to date, sign up to our Morning Edition newsletter to receive a summary of the day's most important news in your inbox every morning. Links are in the show Notes. I'm Samantha Sellinger Morris. Thanks for listening.