Latest / The Morning Edition / My niece needs the NDIS. Yes, it must be cut – but with a scalpel, not a chainsaw

Transcript

My niece needs the NDIS. Yes, it must be cut – but with a scalpel, not a chainsaw · The Morning Edition

• 0:03
  S1: As our journalist James Massola puts it, his niece Masha is,
• 0:07
  S1: like most three year olds, boisterous and bursting with energy.
• 0:12
  S1: Masha is also not like most three year olds. From
• 0:16
  S1: the moment she was born, her parents have had to
• 0:18
  S1: grapple with a complex set of problems that make life
• 0:21
  S1: very different. I'm Samantha Selinger Morris, and you're listening to
• 0:26
  S1: Morning Edition from The Age and The Sydney Morning Herald today,
• 0:30
  S1: chief political commentator James Massola on Australia's National Disability Insurance
• 0:35
  S1: scheme and what next month's expected cuts to the scheme
• 0:39
  S1: really mean. It's April the 15th. James, welcome back to
• 0:48
  S1: the podcast.
• 0:49
  S2: Great to be here, Sam. Thank you.
• 0:51
  S3: Now you've just written a personal.
• 0:52
  S1: Piece about how the government's disability scheme has really been
• 0:56
  S1: a lifeline for your sister and her three year old daughter.
• 0:59
  S1: So can you just tell me about your sister Caroline's
• 1:02
  S1: journey to becoming a parent and her longed for daughter, Eunice.
• 1:05
  S1: Because many of us have had, you know, longed for children,
• 1:08
  S1: fought hard to have them. I know I have, but
• 1:10
  S1: very few have had the experience that your sister has
• 1:12
  S1: had after her daughter was born.
• 1:14
  S2: Yeah, look. That's right. My sister and her husband tried
• 1:17
  S2: for a couple of years. I mean, my wife and
• 1:19
  S2: I had the same thing. It's not uncommon these days, Sam,
• 1:21
  S2: is it? Um. They eventually. Caroline. My sister got pregnant
• 1:24
  S2: with Mateo, and that was, you know, obviously a great
• 1:27
  S2: moment for them, but, um, how do I put this?
• 1:31
  S2: Almost from the well, from the very early months, um,
• 1:35
  S2: after she was born, it was, I think, clear that
• 1:38
  S2: not everything was quite right with Mateo. Um, in sort
• 1:42
  S2: of a growth and developmental sense. She, uh, you know,
• 1:45
  S2: saw a range of specialists for the first couple of years. Um,
• 1:48
  S2: you know, Caro and her husband would be taking Mateo
• 1:52
  S2: to various specialists and what have you. And over time,
• 1:54
  S2: they sort of worked out a couple of things wrong. Like,
• 1:56
  S2: she can't kind of drink properly or close her mouth
• 1:59
  S2: properly to drink properly, you know, know, from her sippy cup.
• 2:01
  S2: Things like that. So they identified little bits and pieces
• 2:05
  S2: of things that weren't quite working. Eventually, some genetic testing
• 2:10
  S2: was done and it was found that Mateo has a
• 2:14
  S2: syndrome called Jansen de Vries syndrome, which is which was
• 2:17
  S2: only discovered in 2017. Um, uh, it's very rare at
• 2:22
  S2: this stage. Karel is aware of there being perhaps five
• 2:25
  S2: people in Australia who have it. Um, you know, the
• 2:27
  S2: Facebook group she's in the worldwide Facebook group she's in
• 2:31
  S2: has about 200 members. You know, sort of a support
• 2:33
  S2: group if you like. And it's only been identified in
• 2:36
  S2: 26 countries now. It's probably more widespread than that. But
• 2:39
  S2: it's just, you know, sophisticated testing is required to diagnose it.
• 2:43
  S2: Some of its symptoms include having an intellectual disability, um,
• 2:47
  S2: delays in sort of speech in walking. Anxiety. Yeah. And difficulty,
• 2:51
  S2: as I said, uh, feeding, drinking and gastrointestinal issues. So
• 2:55
  S2: it has an impact on the whole person. Um, and,
• 2:58
  S2: you know, really it has shaped or will shape Mateo's
• 3:02
  S2: life for the rest of her days.
• 3:05
  S3: And you've written.
• 3:06
  S1: That your sister and therefore Mateo receive funding from the NDIS.
• 3:09
  S1: Of course, to help support her. So what sort of
• 3:12
  S1: funding does she get and how does it help Mateo
• 3:15
  S1: on a day to day basis?
• 3:16
  S2: So she gets this. She gets a stack of different therapies.
• 3:19
  S2: She gets ot occupational therapy, speech therapy, physical therapy. She
• 3:25
  S2: has some work done on I guess. Oh, well, yeah,
• 3:29
  S2: it's behavioural therapy. I guess it's called because she has
• 3:32
  S2: trouble regulating her emotions sometimes because she gets frustrated because
• 3:36
  S2: she can't say how she's feeling.
• 3:39
  S3: Okay, but you've written that.
• 3:40
  S1: Even though the NDIS was actually built for people like
• 3:43
  S1: Mateo and her condition is severe, she's also, I think
• 3:47
  S1: believe got poor vision, uh, poor fine motor skills. Like
• 3:51
  S1: you've mentioned, feeding, drinking and gastrointestinal difficulties. She's also got
• 3:55
  S1: intellectual disability in addition to autism and ADHD, but that
• 3:59
  S1: the funding she receives under the NDIS. Even under its
• 4:03
  S1: current setup, could either drop or be cut for various reasons.
• 4:06
  S1: So how so and why? Because on the face of it,
• 4:09
  S1: like as a layperson, this sounds nonsensical or even cruel.
• 4:14
  S2: Yeah, yeah. Look, I mean, I don't think it's deliberately cruel,
• 4:16
  S2: but it is nonsensical. And I'm only obviously relaying, um, kairo's,
• 4:21
  S2: you know, experience, I'm sure not necessarily the experience of
• 4:25
  S2: everyone in the NDIS. And I should say as well, Sam,
• 4:27
  S2: I'm talking about Caro and Mateo's experience with their permission,
• 4:31
  S2: of course. So what happens in the NDIS is you
• 4:34
  S2: get your, um, uh, your package essentially reviewed not every year,
• 4:39
  S2: but most years, some years they roll it over. It
• 4:42
  S2: allocates a certain amount of money that you can use
• 4:44
  S2: for those physical therapies that I mentioned before. You know,
• 4:47
  S2: you could use them to get a support worker who's
• 4:50
  S2: sort of highly trained, um, to come in. I don't know,
• 4:52
  S2: let's say three days a week or whatever it might
• 4:54
  S2: be and help Mateo or help Caro and Mateo and Vaughn,
• 4:57
  S2: her husband, get her ready for school, those sorts of things.
• 5:00
  S2: Do some of the therapy with her so that mum
• 5:03
  S2: and dad can kind of get ready to go to work.
• 5:05
  S2: Those sorts of things. So in that sense, a tremendous help. Um,
• 5:09
  S2: it also, uh, Cara was a, she estimated that it
• 5:13
  S2: probably cuts and it's a generous package. She didn't want
• 5:16
  S2: me to say exactly how much, but it's probably covers
• 5:19
  S2: less than half of what Cara and her husband are
• 5:22
  S2: having to outlay each year, which is, you know, approximately
• 5:26
  S2: sort of 80 to $90,000. Um, NDIS covers less than half,
• 5:30
  S2: which is great, but it's not everything. And in terms
• 5:32
  S2: of the uncertainty and in terms of reviews, I mean
• 5:35
  S2: this year Cara was saying that they did roll over
• 5:37
  S2: review sorry, her package and it was fine. But the
• 5:40
  S2: preceding year she'd had to sort of go through the
• 5:43
  S2: hoops and prove various things. Now, I think some of
• 5:45
  S2: this is about integrity in the NDIS. Like there's this
• 5:48
  S2: perception that no one's doing anything to monitor the system.
• 5:51
  S2: That's not right. You know, Ndia staff are doing this work,
• 5:56
  S2: but it doesn't necessarily seem to me to make sense. Uh,
• 6:00
  S2: in Mateo's case. But, you know, there it is.
• 6:03
  S1: But there were some things that you wrote in your
• 6:05
  S1: column that I thought, wow. Because for one thing, you
• 6:08
  S1: said that this incredibly rare syndrome that she's got that,
• 6:11
  S1: like you say, presents really whole person challenges. Uh, it's
• 6:15
  S1: hard to imagine any parent being able to manage this
• 6:17
  S1: without help, but that she actually isn't even getting NDIS
• 6:22
  S1: funding because of this syndrome. Because it's so new, it
• 6:24
  S1: isn't even recognised by the scheme, but rather it's actually
• 6:27
  S1: her development delays in intellectual disability or qualify her. So
• 6:32
  S1: you said she receives a high level of support now
• 6:34
  S1: at this critical stage. Of course, when early intervention can
• 6:37
  S1: make a big difference. But you said that when she
• 6:39
  S1: reaches six, her funding could drop unless it's judged that
• 6:42
  S1: she still has a significant intellectual disability. Now, that would seem,
• 6:45
  S1: as a layperson, again, problematic because if her intellectual disability improves,
• 6:51
  S1: let's just say, and it isn't as strong, her funding
• 6:54
  S1: could be cut, even though she's got all of these
• 6:56
  S1: incredibly severe challenges that are associated with this syndrome. So
• 7:01
  S1: isn't this not good enough or what?
• 7:03
  S2: In a sense, yes. I mean, look, she is, as
• 7:05
  S2: you just touched on, Jeeves isn't covered, but it's a
• 7:09
  S2: sort of global developmental delay category. So that means she's
• 7:14
  S2: in pretty good shape until she's six. It's not specific
• 7:16
  S2: to Mateo that her funding could go down once she
• 7:19
  S2: gets to six. That's pretty I think that's pretty standard
• 7:22
  S2: for the scheme. I mean, the other thing, and this
• 7:24
  S2: is no knock on anyone, um we don't know the
• 7:28
  S2: extent of her intellectual disability like some jdavies kids have.
• 7:32
  S2: It's almost impossible to identify that they've got it. Um,
• 7:35
  S2: you know the syndrome, it's very mild. Some it's, uh,
• 7:39
  S2: less mild. Personally, I'm, you know, I see characters in Melbourne.
• 7:43
  S2: I'm in Canberra maybe once every 2 or 3 months.
• 7:45
  S2: And so I see how many new words Mateo has learned.
• 7:48
  S2: She's maybe got 100 now and you can pick them out. Oh,
• 7:50
  S2: she can say my kids names now or she can
• 7:53
  S2: say this now. I'm an optimist and I'm hoping that
• 7:55
  S2: she'll get, you know, much further down the track of
• 7:58
  S2: developing her language. But we just don't know. And if
• 8:01
  S2: if you know, if things don't go quite as we
• 8:04
  S2: might hope. Then, um, you know, I guess the converse
• 8:07
  S2: of that is she's more likely to stay on the
• 8:09
  S2: higher support plan going into the future. So there's a
• 8:13
  S2: sort of a general uncertainty there, some of which is
• 8:16
  S2: NDIS related and some of which is just, you know,
• 8:18
  S2: the vicissitudes of life essentially.
• 8:20
  S1: But you also wrote that if she had qualified because
• 8:22
  S1: of her autism, because she's also got that that much
• 8:25
  S1: of the funding would be cut. So riddle me that, James.
• 8:29
  S2: Yeah. So this is I mean, autism and its coverage
• 8:32
  S2: by the NDIS is very much in or are rather
• 8:35
  S2: under the spotlight at the moment, because about 40% of
• 8:38
  S2: people on the scheme now have developmental delays or I
• 8:42
  S2: think it's called I might get the term wrong, lower
• 8:45
  S2: level autism. So it's not severe autism. And what the
• 8:48
  S2: government has been saying, look, that's too many. That's hundreds
• 8:51
  S2: of thousands of kids. We need to win that back. Now. Again,
• 8:55
  S2: it's simply the case that we don't know the level
• 8:57
  S2: of severity of Mateo's autism yet. So it, uh. Until
• 9:02
  S2: she gets older, until they can actually calibrate that, it
• 9:05
  S2: could be the case that she would lose a chunk
• 9:08
  S2: of funding because she judged to have only mild or
• 9:10
  S2: moderate autism. But then, as I said before, kind of
• 9:13
  S2: counterbalancing that, there's the question of how big is the
• 9:15
  S2: global developmental delay? So she might be covered under that stream,
• 9:19
  S2: if not the autism stream. Um, it's a bit I mean,
• 9:23
  S2: this is the thing about the NDIS, almost from the
• 9:25
  S2: moment it was born, became the kind of catch all
• 9:28
  S2: and fix all for everything. And states pulled back from
• 9:32
  S2: providing some of the services in terms of ADHD and autism,
• 9:35
  S2: for example, that they'd been providing for years. And the
• 9:39
  S2: NDIS became the thing that fixes everything. And it's not
• 9:42
  S2: supposed to be that. And that's not to say that
• 9:44
  S2: some of the people accessing it, you know, rorting the
• 9:47
  S2: system or undeserving, I'm not saying anything like that, but
• 9:50
  S2: it was meant for people with more severe disabilities. And
• 9:53
  S2: that's what the government is grappling with now, is how
• 9:55
  S2: do we give that support to high needs people? How
• 9:58
  S2: do we give it to low needs people? There's a
• 10:00
  S2: program coming online called Thriving Kids, which will be state delivered,
• 10:05
  S2: but partially, I think federally funded. That's going to be
• 10:08
  S2: for kids at the lower level on the autism spectrum
• 10:11
  S2: that they're hoping will take some of the burden off NDIS.
• 10:14
  S2: There are so many moving parts here. It's a hell
• 10:17
  S2: of a thing to try and get a handle on,
• 10:18
  S2: but it's something that we do need to get a
• 10:20
  S2: handle on because the cost of the NDIS, it's one
• 10:22
  S2: of the top five most expensive budget items.
• 10:27
  S1: After the break.
• 10:29
  S2: There are kids and adults and families affected by this.
• 10:33
  S2: And hopefully they, you know, cut with a scalpel and
• 10:36
  S2: not with a chainsaw.
• 10:39
  S1: Let's get into this because as you've just written, the
• 10:41
  S1: Prime Minister has declared that the government is about to
• 10:45
  S1: make changes to the NDIS. And you wrote that he's
• 10:47
  S1: actually just made the strongest comments yet on this count.
• 10:50
  S1: So what is he flagged?
• 10:52
  S2: So what the Prime Minister said, Sam, was that essentially
• 10:56
  S2: the scheme has to be sustainable, it has to be
• 10:59
  S2: affordable and indeed that it risks potentially losing its social
• 11:03
  S2: licence if the government can't shape it into a more
• 11:06
  S2: manageable expense on the budget. Bottom line now. Moving forward
• 11:10
  S2: from that, um Mark Butler has indicated it's going to
• 11:13
  S2: be one of the major areas that they'll seek savings
• 11:15
  S2: in the coming federal budget. He wants the scheme to
• 11:18
  S2: stop growing at a rate of 10% per year, and
• 11:21
  S2: wind it back to 5 or 6% next week. He's
• 11:24
  S2: at the Press Club. He's going to outline some of
• 11:26
  S2: the changes that he's making. And interestingly, the peak body
• 11:29
  S2: for the disability sector, you know, the people who provide
• 11:32
  S2: some of these services has actually said to its members,
• 11:36
  S2: this is a moment to lean into. This is a
• 11:38
  S2: moment to embrace change. Like, you know, I think reading
• 11:41
  S2: between the lines, what they're saying is they'd rather a
• 11:44
  S2: Labour government was doing this work than a Liberal government, perhaps.
• 11:47
  S2: Maybe that's unkind of me to the Liberal Party. But
• 11:49
  S2: that's that was my interpretation of what they're getting at. Um,
• 11:53
  S2: so there will be, you know, we'll know more about
• 11:55
  S2: what's been cut, what's being wound back, what's being reprioritized.
• 11:58
  S2: I think it's next Thursday or next Wednesday at the
• 12:01
  S2: Press Club.
• 12:01
  S1: Okay, but let's get into, you know, for those who
• 12:04
  S1: haven't been following this closely, because we know that people, bureaucrats,
• 12:07
  S1: disability insiders, they've been wringing their hands over the NDIS
• 12:11
  S1: for years. So can you briefly sum up for us
• 12:14
  S1: how bad have things blown out? How bad is the
• 12:17
  S1: rorting and the frauding which we keep seeing reports about?
• 12:21
  S1: Has it just been badly managed or something else entirely?
• 12:24
  S1: Because you've written that almost from the moment the NDIS
• 12:27
  S1: was brought to life by the Julia Gillard government in 2013,
• 12:31
  S1: that there have been complaints about the size and the
• 12:33
  S1: cost of the scheme.
• 12:34
  S2: Yeah, look. That's right, the scheme now costs a bit
• 12:37
  S2: over $50 billion a year. I think that's sort of
• 12:40
  S2: roughly not quite double, but close to double what it
• 12:42
  S2: was estimated to cost. At this point in time, the
• 12:46
  S2: number of participants has gone. It's about 760,000 people. I
• 12:50
  S2: think that's about 220,000 250,000 people more than were expected
• 12:55
  S2: to be accessing the scheme. It's projected to be costing
• 12:58
  S2: over $100 billion a year by the early 2030s. Like
• 13:03
  S2: there is a there is a bit of a problem there.
• 13:05
  S2: If you if you see what I mean, Sam, that
• 13:07
  S2: is a massive amount of money. And then that's not
• 13:09
  S2: to say that, uh, people don't need that help. Of
• 13:12
  S2: course they do. That's the point of the piece about Mateo.
• 13:14
  S2: But the other thing that's been playing out is that
• 13:16
  S2: there has been, um, have been rather some rorts. There's
• 13:19
  S2: been allegations of criminal gangs getting involved in providing services
• 13:23
  S2: through third parties, obviously, and that one of the chief knocks,
• 13:26
  S2: I guess, against the scheme is once, you know, the
• 13:30
  S2: claim goes that once, let's say a cushion for your
• 13:34
  S2: wheelchair or whatever is certified as acceptable for the NDIS,
• 13:39
  S2: you know, you see the prices on it double or
• 13:41
  S2: triple or quadruple. You know, there's complaints about physical therapists
• 13:45
  S2: for kids, you know, kids learning to walk like my
• 13:47
  S2: niece costing sort of $150 an hour. Whereas if they
• 13:51
  S2: weren't accessing the care through the NDIS, it might be
• 13:54
  S2: $75 an hour or something like that. I'm sure those
• 13:56
  S2: figures aren't quite right, but you get the idea. Um,
• 13:58
  S2: it's significantly more expensive. And then there's a question of accreditation.
• 14:02
  S2: So this does seem to be something that the government's
• 14:05
  S2: moving towards. It seems like it seems likely there'll be
• 14:08
  S2: more stringent guidelines for people to qualify as an NDIS provider.
• 14:13
  S2: So you'll have to do a bit more bureaucratic paperwork, frankly.
• 14:16
  S2: But the idea being that that will weed out some
• 14:19
  S2: of the sort of misuse of funds, the rorts that
• 14:22
  S2: are taking place and essentially bring a bit more stringency
• 14:26
  S2: to how the program spends money.
• 14:27
  S1: Yeah. And so and why are some people within the
• 14:30
  S1: disability sector viewing this upcoming federal budget as something like
• 14:34
  S1: a D-Day for the NDIS? Because I saw that one expert,
• 14:37
  S1: Martin Laverty, he was on the first National Disability Insurance
• 14:40
  S1: Agency board. He now runs a large non-profit provider. He
• 14:44
  S1: told our colleague Natassia Chrysanthos that he thinks, quote, this
• 14:47
  S1: is the last budget in which the Australian government can
• 14:50
  S1: save the NDIS. If we don't chart a course to
• 14:53
  S1: cost correction, it will spiral and those that need the
• 14:56
  S1: scheme the most will be those hardest hit. When inevitably
• 15:00
  S1: a future government needs to cut the scheme back. So
• 15:02
  S1: first off, is this hyperbole or is there some truth
• 15:05
  S1: that this could be the last budget for the government
• 15:08
  S1: to save the NDIS?
• 15:10
  S2: Look, I think it's slightly there's an element of hyperbole there,
• 15:14
  S2: but I understand what Martin's saying is essentially, if we
• 15:17
  S2: don't do it in a kind of, um, do it
• 15:20
  S2: now in a careful, cautious and sensitive way, it will
• 15:23
  S2: continue to grow and we'll get to a point where
• 15:26
  S2: it really does need a chainsaw, you know, taken to
• 15:29
  S2: it because it's just rising in cost so quickly. Um,
• 15:33
  S2: so I think that's where he's coming from. Do it
• 15:35
  S2: now and do it the right way rather than letting
• 15:37
  S2: it slip into disaster territory.
• 15:39
  S4: And what would the chainsaw.
• 15:40
  S1: Approach look like? Like if we're looking down the sticky
• 15:42
  S1: end of again, because obviously so many governments arguably have
• 15:46
  S1: not managed this, it has continued to blow out. It
• 15:49
  S1: has been rife reportedly with rorting, which is not helping
• 15:52
  S1: any of us. Uh, so who will be hit hardest?
• 15:56
  S1: I guess if this chainsaw approach comes in.
• 15:59
  S2: It would it would presumably be kids or people rather
• 16:02
  S2: with the lowest or relatively speaking, the lowest need for
• 16:06
  S2: these services. So you might see, um, a and I'm
• 16:10
  S2: not saying this is going to happen in this budget
• 16:11
  S2: because they're trying to avoid doing this, but you might
• 16:14
  S2: get to a point where you suddenly say, right, anyone
• 16:17
  S2: with autism is off the NDIS rather than the gradations. So,
• 16:21
  S2: you know, if you're sort of this category, you should
• 16:23
  S2: do thriving kids. And if you're in this category, you
• 16:25
  S2: can get this much support but not that much support.
• 16:27
  S2: And if you're in this category, you get more support.
• 16:29
  S2: It would it would. Yeah. I mean, it would be
• 16:31
  S2: a blunt, to use another metaphor, a blunt stick approach, basically,
• 16:35
  S2: rather than a nuanced and careful approach.
• 16:40
  S1: And James, just to wrap up, I guess, how are
• 16:42
  S1: you and your sister and Mateo feeling in advance? I mean,
• 16:46
  S1: the budget's just coming down next month. Is, is Caroline
• 16:50
  S1: very nervous?
• 16:51
  S2: Uh, no, I think she's watching with interest, like most
• 16:54
  S2: participants in the NDIS. I mean, one of the, one
• 16:57
  S2: of the things that really struck me about the piece
• 16:59
  S2: I wrote last Friday about Mateo. Sam, um, was just
• 17:02
  S2: how much feedback I've had from, you know, across the
• 17:04
  S2: political spectrum from our, our loyal readers and subscribers. Like
• 17:08
  S2: I've had dozens of messages and LinkedIn posts and what
• 17:12
  S2: have you. It's been, it's been great. And people have
• 17:14
  S2: been sort of saying like, thank you for saying this.
• 17:17
  S2: You know, we do need to course correct on the NDIS,
• 17:20
  S2: but we do need to remember that there are kids
• 17:22
  S2: and adults and families affected by this. And hopefully they,
• 17:27
  S2: you know, cut with a scalpel and not with a chainsaw,
• 17:30
  S2: as I said in the piece. Um, so I think
• 17:32
  S2: she's watching with interest. Yeah.
• 17:35
  S1: It's so important. And I'm so grateful to you and
• 17:37
  S1: your sister for sharing, being happy to share her story
• 17:40
  S1: and Mateo's story. So thanks so much, James, as always,
• 17:43
  S1: for your time.
• 17:45
  S2: Your pleasure Sam. Thank you.
• 17:48
  S1: In other news today, Qantas has flagged cuts to domestic
• 17:52
  S1: routes as it grapples with up to $800 million in
• 17:55
  S1: additional fuel costs due to the US Israel war with Iran.
• 18:00
  S1: Harry and Meghan are in Melbourne again today. Harry heads
• 18:03
  S1: to Western Bulldogs HQ for Movember and then travels to
• 18:06
  S1: Canberra for a series of engagements at the Australian War Memorial,
• 18:10
  S1: including a reception for Invictus, Australia. Follow our live coverage
• 18:15
  S1: at the age.com and view. Today's episode of The Morning
• 18:24
  S1: Edition was produced by Tammy Mills, with technical assistance by
• 18:27
  S1: Josh towers. Tom McKendrick is our head of audio. To
• 18:31
  S1: listen to our episodes as soon as they drop, follow
• 18:34
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• 18:37
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  S1: the day's most important news in your inbox every morning.
• 18:48
  S1: Links are in the show notes. I'm Samantha Selinger Morris,
• 18:51
  S1: thanks for listening.