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Chapter 1: What are the main concerns about the NDIS overhaul?
Now, these are all hard decisions, but they're unavoidable and they're urgent. And I'll be seeking passage of these immediate spending controls in the budget session of Parliament.
The government says the NDIS has drifted too far from its original purpose, has grown too fast and too loosely, and that it now needs a major reset.
The NDIS, remember, was established to support people with significant and permanent disability, but its scope has expanded to cover many Australians with less significant support needs.
Mark Butler says the changes, which will see eligibility tightened, participants reassessed and 160,000 people booted from the NDIS, are about making the scheme sustainable and pulling it back to the people it was originally designed to support.
We can't afford for the NDIS to continue growing at its present rate. But far more importantly, we can't afford for the NDIS to fail.
But for people with a disability, families and carers, the language has done little to calm anxiety. Because this is not just a crackdown on fraud and dodgy providers. It's a change to who gets support, how that support is judged, and what happens to people who no longer meet the new test. I'm Daniel James, and you're listening to 7am.
Today, Australian Autism Alliance co-chair Jenny Caravolos on the government's NDIS overhaul and why it's causing so much apprehension across the community. It's Friday, April 24. Jenny, what did you make of Mark Butler's press conference on Wednesday?
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Chapter 2: How will the changes to eligibility affect NDIS participants?
There was a lot to absorb actually. If I look for the positives in what was being said, it was great that it was being recognised that it was a system failure problem and it wasn't based on people with disability and in particular autistic people.
The Diagnosis Gateway has funnelled people onto a scheme that was never designed for them. Now that's not their fault. They've been told this is the only program available.
And it was also great to hear that it was being said, which is something we've espoused for a long time, that fraud is not being done by people with disability.
When we talk about fraud in the NDIS, we're not talking about people with disability. We're not talking about families who've been put on a plan and offered support. They're not doing anything wrong.
What struck you about the type of language he was using?
The language for me, there was a difference between when you hear about aged care, which absolutely I support, it was about respect and investment. And when you heard about disability in the same context, you hear about costs.
slowing these rapid cost increases, clearer eligibility requirements and so importantly delivering high quality supports and services for participants. Because Australians expect the NDIS to support people with a disability and their families and to continue to transform their lives in the way we've seen happen.
And it was said that human rights was an achievement, which is great, but still everything was couched in terms of costs and making sure things were sustainable.
These are huge announcements that mean the NDIS participants, like your son, will be reassessed and that over 160,000 people will be moved off the scheme, while others will have their budgets cut by as much as 50%.
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Chapter 3: What are the implications of the NDIS funding cuts?
Can you explain just how significant that is?
It is huge. It is absolutely huge. I have a saying at the moment and it's autistic people should not be the shock absorbers of systems governments have not yet fixed. The issue here is the risk is losing what's been working before.
many people that they're referring to as low and moderate support needs, they receive a great outcome because a little goes a long way in sustaining education and employment. Before the NDIS, there was no coherent system for people with mild to moderate needs. Access and supports were inconsistent.
And in fact, there was a Senate inquiry into autism that confirmed that systems were fragmented, complex and failing to deliver outcomes. The evidence is clear that autistic people experience poorer outcomes across The whole lifespan, education, employment, health and inclusion, generic systems didn't deliver effective outcomes and the NDIS has delivered real benefits.
So if autistic people aren't in that scheme, what scheme were they meant to be in?
You spoke a little bit about the positives and about some of the risks. What were some of the negatives from your perspective about Mark Butler's announcement on Wednesday?
Well, definitely the issue that it came across that there's all these initiatives, which we absolutely support reform and that the need for the NDIA is to be sustainable. But there's a capping, for instance, on supports. So as soon as there's capping on supports, it still means what happens to the need. So you can cap a budget, but that doesn't mean the need has disappeared.
So there's still a huge amount of work to be done. The other thing was about eligibility and who would be getting access and who wouldn't.
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Chapter 4: What is the community's reaction to the NDIS reforms?
They're all huge structural reforms. There is confusion and distrust about assessments. That's what community is telling us. People don't understand how decisions will be made about access. There's strong anxiety about cap supports, as I said, versus real need. And there's fears of gaps, which are legitimate, about falling through the cracks.
My reaction is one of shock and of deep sadness. The disability community knew that this announcement would be bad, but this is quite frankly terrifying for us and our families.
So is there a real sense within the community that you represent, the autism community, that you are being targeted through these reforms?
Absolutely. It's been referenced specifically that autism is the largest cohort in the NDIS, that reforms specifically do affect children under nine, and as I said, mild to moderate autism. So the interpretation in community spaces is that autistic people are the ones being moved out.
Jenny, your 20-year-old son, Stefan, is an autistic person on the NDIS. How crucial is it for your lives? And are you worried that he could be one of those who's affected by these cuts?
Absolutely.
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Chapter 5: How does the language used by the government impact the disability community?
It has played a role for my son, interestingly, predominantly through education, to help support him to be the best that he can be. And as a result of that, it was said that he's teachable, he learns, and he progresses. For us, it means that we're going back into uncertainty. His next life stage would be employment. So what does that mean for us?
And the other thing is, I actually stepped out of a CEO role in order to support my child. Doing that meant I'm a less productive member of the Australian economy. So the more pressure that is put on individuals and families, the more it impacts and we end up with that informal carer economy, which currently costs $79 billion. $79 billion.
We've also worked out that if something happens to us by the age of, say, 70, although we would have provided for our son to have a home and to have an asset behind him, he would still need supports. If he doesn't stay on his path and things break along the education to employment transition path, it'll cost government $16.5 million to sustain our son.
Coming up, the NDIS cut that could see participants cut off from their communities. Jenny, the government has made a lot of noise about consultation and negotiating with the various communities that are impacted by this. Do you feel like you've been consulted with these reforms?
With the reforms, there has been consultation about the new framework planning. In terms of the specific reforms that were called out, there hasn't been consultation, but that's been indicated by the Minister himself, indicating there's a lot to be done. He had stated that specifically with Thriving Kids. And there's still a lot to be done in terms of readiness.
And we strongly support being involved and being able to be part of the solution because it is our community with lived experience. and the disability representative organisations and other support agencies that have that evidence-based research, evidence in practice, lived experience, so that we can focus on real solutions and make sure that we get it right.
One of the cuts Mark Butler announced was a 30% cut to the social and community participation budget. Now, $200 million is instead being allocated to a new inclusive communities fund, but it does mean that the average NDIS participant will lose roughly $7,000 in funding for the kinds of things that help them lead an ordinary life. How big an impact will that have?
It's significant.
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Chapter 6: What are the risks of losing support for individuals with mild to moderate needs?
Again, for autistic people in particular, but all people with disability, generalised supports don't work. So it's been about individualised supports. Already people are excluded, autistic people. It's been demonstrated. We had a Senate inquiry on autism and people are completely socially isolated, a significant portion because of their needs. So when education systems break down and you're
at home, that means you don't get the social interaction. When employment systems break down and you're not in meaningful employment to interact with others, again, your social network breaks down. And then just having those supports to be part of the community are absolutely invaluable.
The government says fraud inside the NDIS has become a major problem. How big a problem is it? And what does it say about how the scheme has been policed?
Fraud is a significant problem. I mean, I don't need to repeat or come up with different statistics to Minister Butler. He has indicated, I mean, and this is a telltale sign, that it has been a focus for criminal activity and fraudulent activity by not all providers, but some providers.
The fraud in the NDIS is being perpetrated by low lives who are scamming both the taxpayer, but more importantly, people with a disability.
But again, government is openly now saying that those critical controls and systems haven't been in place. The gates have been open and it's time to close them. So we absolutely agree. But what I am going to say is...
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Chapter 7: What role do consultations play in shaping the NDIS reforms?
We're expecting that it is the systems that are being controlled and not individuals. The NDIS was set up about choice and control. We cannot lose that as a fundamental principle to people. That is what equity is about. That is what rights are about.
And finally, Jetty, how much confidence do you have in the government and the systems that are required to change to make this thing work? How much confidence do you have that this reset will actually work?
I have absolute confidence if the disability representative organisations and other support organisations across researchers, educators, lived experience are all working together to being part of the solutions, testing the assumptions and actually doing trials. If we do great system testing and ensure we're clear on the outcomes and measuring them along the way, it'll happen.
If we do reform the way that's been done in the past, where we start making the changes before the system is ready, then all we've done is created a problem and it will reveal itself in other systems instead.
Jenny, thank you so much for your time.
Thank you.
Also in the news, the states have already begun flagging issues with the federal government's NDIS overhaul. The New South Wales Premier says his government won't be able to provide an equivalent level of care for those who are cut from the scheme. About a third of the 160,000 people set to be booted from the NDIS are expected to come from New South Wales.
And Kyle Sandilands has been accused of berating radio listeners and bosses in expletive-ridden rants. Details of the alleged attacks have been revealed in court documents for ARN's defence against the $85 million claim filed by Sandilands. Kyle and Jackie O's former employer is also suing the pair, demanding they pay for the advertising loss by Kiss FM after their show was pulled off air.
I'm Daniel James. Thanks for listening to 7am. We'll be back tomorrow.
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