Kurt Fearnley: Harry, what's a disability?
Harry Fearnley: It means like you have a wheelchair and you've grown up and you have short legs.
Kurt Fearnley: What else? It's not just people with short legs!
Harry Fearnley: Well, you can be blind. You can have one arm. Or you can have no feet. Or you can have no hands.
Kurt Fearnley: Does your dad have a disability?
Harry Fearnley: Yes, a wheelchair.
Kurt Fearnley (to Emilia): Hey! Do you know what a disability is? What is it?
(Emilia Fearnley makes gibberish noises)
Kurt (to Emilia): Speak up!
(Emilia says more gibberish, Kurt laughs)
Kurt Fearnley: Do you know what a wheelchair is?
Emilia Fearnley: Yep!
Kurt Fearnley: Who's got a wheelchair.
Emilia Fearnley: Dad…
Kurt Fearnley: Who??
Emilia Fearnley: Daddy!
Kurt Fearnley: Do you know what we spoke about, what an NDIS is?
Harry Fearnley: It pays people to go to work.
Kurt Fearnley: It gets people with disabilities to go to work. Do you think that you would give your pocket money so that somebody with a disability could feel like they're the same as you?
Harry Fearnley: Yes!
Kurt Fearnley: You'd pay your pocket money??
Harry Fearnley: Yes.
Kurt Fearnley: Good!
Voice-over [Kurt Fearnley]: I’m Kurt Fearnley and this is A Nation Changed. I’m talking about disability with my kids, because it’s a part of our life. For us - for them - disability is a physical disability - my disability. But disability comes in all shapes and sizes - some physical, some intellectual, some invisible. 4.5 million Australian families all experience disability in their very own way. Nearly half a million people are on the NDIS. But the NDIS is a system that’s been put in place to support all Australians. Because any of us, one day, could come to rely on it. Which is why it’s vital we ask - is the NDIS living up to its principles?
This is the question I’ve been trying to answer with this series, by peeling back layers and understanding how this once in a generation social reform was born. In the last few episodes, we’ve heard about how the NDIS is changing lives for the better, but also about the ways it’s letting people down. In this last episode, we’re looking at getting the NDIS back on track. And to do that, we first have to take a trip to the Senate.
Voice-over [Kurt Fearnley]: In March this year, Martin Hoffman - the CEO of the National Disability Insurance Agency - went to a Senate estimates hearing. An estimates hearing is where senators meet to take a closer look at how the government is spending taxpayer money. At this hearing, the head of the NDIA appeared to reveal something shocking. Between 2016 and 2019 - in the transition to the NDIS - 1,279 people were assessed as eligible for the scheme, but died before receiving their first plan.
Jordon Steele-John: Those are thirteen hundred human beings.
Voice-over [Kurt Fearnley]: Jordon Steele-John is a Senator for the Australian Greens. He’s also the only Australian Senator with a disability. Steele-John was at this hearing.
Jordon Steele-John: And there is a high probability that at least one of them may be in a better space with their health now if the agency delivered them the services they need.
Voice-over [Kurt Fearnley]: Of those who died, 30 were children between seven and eighteen years of age. 35 were under six. But the idea that nearly 1300 people died because the NDIS didn’t get to them in time - is one that Stuart Robert, the Minister for the NDIS, rejects.
Stuart Robert: Yeah. I reject it again, completely and utterly disagree with you on that. That dreadful headline that I refuted saying twelve hundred people died waiting for support, no they didn't.
Voice-over [Kurt Fearnley]: Minister Stuart Robert says those who died were still receiving disability support from the states and territories until they transitioned to the NDIS.
Stuart Robert: And ipso facto, if the NDIS had been there for them, they wouldn't have died. That is absolutely and utterly not the case. They were receiving the best care that the states and territories provided whilst transitioning through to the NDIS.
Jordon Steele-John: My entire community of four million people, of which the best part of 500,000 are reliant on this scheme to live a life of meaning and purpose and have hope that things will get better. Being administered by a man, who I’ve just heard, basically said that thirteen hundred people dying without the services they need, it's not his problem? It's just... it's... yeah. It's so not okay.
Voice-over [Kurt Fearnley]: Okay so in previous episodes we heard how a rushed start to the NDIS caused problems. Now we’re hearing that because the NDIS wasn’t rolled out fast enough, people may have died as a result. It’s a bit of a paradox, and a confusing one at that, but really it speaks to the complexity of the scheme.
Martin Hoffman: Any death of course, particularly early death, is tragic for obviously the individual, but for their families and loved ones as well...
Voice-over [Kurt Fearnley]: This is Martin Hoffman, the boss of the NDIA...
Martin Hoffman: The NDIS is not the health system and is not responsible for the provision of life saving or life preserving therapy or treatment or hospitalization. And so issues around death are issues for the health system. It's not that if they had got their plan more quickly, they would not have died because the cause of death is a health issue.
Voice-over [Kurt Fearnley]: For Senator Jordon Steele-John, this is personal.
Jordon Steele-John: God, I’ve just got to take a second as a disabled person to absorb that. He has absolutely no way of telling whether the provision of those services that they were waiting for would have saved their lives or not. What anybody could tell him is that the lack of services and supports are often a key factor in the development of negative health conditions that then lead to death, prematurely. I find that actually really, as you can maybe hear in my voice, really quite personally distressing to hear. We deserve as disabled people so much better than that.
Voice-over [Kurt Fearnley]: What was revealed in March is just one example in a long list of concerns. Concerns about not just the NDIS, but what’s going on in the disability sector overall. Many believe the revolutionary social reform is failing to meet its potential. And they believe the key to making it better is putting people with disability in the driver's seat of their own lives.
Jordon Steele-John: When we say that the NDIS is ours, we mean it. It belongs to disabled people. We will defend it to the end because the prospect of doing otherwise is to live a life of the denial of our humanity. And that is not something that we are willing to accept.
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Kurt Fearnley: One, two, three, four, five. Yes, everything's below the red.
Kurt Fearnley: Nas can I get you to introduce yourself just for the top of it.
Nas Campanella: I'm Nas Campanella and I am the disability affairs reporter at the ABC.
Kurt Fearnley: (excitedly) You're a professional, I love the radio voice!
(Kurt and Nas laugh)
Voice-over [Kurt Fearnley]: Before we look at the changes being made to the NDIS, you have to know what's going in the disability sector. In April, 2019, a Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability was established. Nas, who is blind, is the ABC’s lead reporter on the Royal Commission.
Nas Campanella: I would be lying if I said that ah this hasn't affected me at all. Obviously, I live with a disability myself. I have friends and family who live with a disability. And, you know this is my community, this is our community. There have been several times where I've caught myself sort of shedding a tear while listening to the hearing while writing my stories. Some of those have included things like people being left without support during COVID-19.
People being left to feel like they were going to die alone without support and people struggling to get access to medication, food, the essentials that they could normally get a hold of ordinarily. And then hearings like in education, where people were saying that they were verbally or physically abused by teachers, that teachers didn't understand the needs of their children.
A really heartbreaking one where a mum of a girl who lives with Down Syndrome said that she was participating in a dance performance in front of the school, but her daughter was made to stand 10 feet away from the rest of the group, you know, a real physical representation of segregation and something that I think a lot of people think doesn't happen anymore.
Voice-over [Kurt Fearnley]: While the royal commision isn’t an inquiry into the NDIS, Nas says the scheme is a critical part of the conversation. The good AND the bad.
Nas Campanella: The NDIS is factored in in a couple of ways. I heard from a mum whose son had a 13 year ordeal adjusting to group homes. Before the NDIS, she had real trouble sort of getting funding for one on one supports and things like that. And then, when the group homes just weren't working for him, you know, she was able to, through an NDIS package, get 2 support workers during the day one overnight. And he was able to pursue his love of art and have a really fulfilling life. And she told the Royal Commission that that had been life changing.
Nas Campanella: There have been lots of people who have talked about some of the shortcomings and whether it be in the COVID-19 inquiry, for example, umm the fact that it took a little while to get access to particular support.
Voice-over [Kurt Fearnley]: Nas says the hearings have been tough, but they’ve also helped create a real sense of hope in the disability community.
Nas Campanella: I think many in the disability community want long-lasting change. They want to know that the things that are being heard, some of the really sad, depressing stories are not going to be repeated and that we learn from some of these mistakes or shortcomings.
Nas Campanella: I think some of the issues that are being canvassed are issues that the disability community has wanted canvassed for a very long time.
Voice-over [Kurt Fearnley]: Some of the testimony from the Royal Commission has been absolutely compelling.
Sam Petersen: I will explain why I see the whole system with shared supported accommodation as wrong.
Voice-over [Kurt Fearnley]: This is Sam Petersen. Sam gave evidence at a hearing in Melbourne.
Sam Petersen: In the shared supported accommodation, there was a buzzer system which I would press to let support workers know I needed assistance, for example, to let them know I was ready to get off the toilet or out of the shower. I could be waiting regularly for up to an hour or an hour and a half. My bottom would get sore from sitting on the commode chair. Sometimes the buzzer did not work. I complained internally with little result. They really needed a better buzzer system. A couple of the support workers said I buzzed too much, but I'm hyper aware of not crying wolf and only buzzed after fifteen minutes if someone had not attended to me. So it was very insulting.
Voice-over [Kurt Fearnley]: There have been dozens of equally harrowing stories. When I spoke with the ABC’s Nas Campanella in late September, the most recent Royal Commission hearings were on the use of psychotropic drugs.
Nas Campanella: We're talking about things like antipsychotics, antidepressants and mood stabilizers. So some of the things like Valium, Xanax. The distinction is that these drugs are not being used to necessarily treat a mental illness, they're being used to alter the behavior and emotions of people living with disability.
Nas Campanella: Some of the things we heard was that these drugs are being overprescribed. They're being used to mask the behavior or change it rather than, I guess, address the root cause of the problem. And the royal commission also heard that doctors are often all too willing to prescribe these medications as a quick fix.
Voice-over [Kurt Fearnley]: At the estimates hearing in March, there were more revelations. The NDIS watchdog, the Quality and Safeguards Commission, reported that NDIS service providers used unauthorised restraints more than 65,000 times. These restraints included seclusion, physical restraints such as strapping people down, as well as chemical restraints or sedation, in some cases the use of psychotropic drugs. NDIS Minister Stuart Robert’s response is that the use of unauthorised restraints is nothing new.
Stuart Robert: What you're also seeing for the first time ever, is reporting. None of this reporting existed ever in the state and territory schemes ever. There's not a great increase in the use of behavioral support or use of restraints or the areas we're talking about here. It's been commonplace right across state and territory schemes for a very long time. Just none of it has been reported. There hasn't been a Quality and Safeguards Commissioner who can get a grip of it, who can publish it and be transparent and then seek ways for the sector to adjust.
Voice-over [Kurt Fearnley]: More figures show despite receiving more than 8000 complaints, the Quality and Safeguards Commission has issued only one fine and banned one service provider. This fine and ban were the result of the death of Adelaide woman Ann Marie Smith in April. Ann Marie Smith died from septic shock, organ failure, pressure sores, malnutrition and issues connected with her cerebral palsy after she was stuck in a cane chair for 24 hours a day. Her service provider, Integrity Care, has been banned from the NDIS. But this tough response is incredibly rare.
Stuart Robert: The answer is not fining people. The answer is working with providers who are trying to do the right thing. Testing them wherever possible and helping providers to be better. Would it make everyone feel better if there were a thousand fines? I'm not sure it would make the scheme better. You can't judge a regulator and their output and what they're doing by the number of fines they produce.
Voice-over [Kurt Fearnley]: As the Royal Commission continues on, the federal government also announced their response to the David Tune review. The Tune Review is one of the biggest inquiries into the performance of the NDIS so far. It included 29 recommendations to improve the scheme. We spoke about some of these in episode 3, but another recommendation that’s really making waves is the introduction of independent assessments.
Nas Campanella: The independent assessments will involve someone paid for by the NDIS to come in and assess the level of funding, but also eligibility to be on the scheme, to remain on the scheme.
Voice-over [Kurt Fearnley]: NDIA boss Martin Hoffman says these assessments will make getting on the scheme a faster process.
Martin Hoffman: We want to use those to make it clearer and simpler and quicker. And then allow participants to make their own decisions about how best to use their plan budget in order to assist them pursue, pursue their goals and aspirations.
Voice-over [Kurt Fearnley]: But Nas Campanella from the ABC says these announcements have raised some massive red flags for the disability community.
Nas Campanella: People within the disability community are quite concerned, at a couple of things. Namely, the template that's being used umm to do these assessments, that the people doing the assessments don't necessarily know them, their history, the context at which their condition manifests, and really that it's going to be done very quickly. And a lot of people are quite worried that it's, it’s a way of weeding people out of the scheme.
Voice-over [Kurt Fearnley]: Jo Berry, an NDIS participant from Sydney, shares these concerns.
Jo Berry: Now, this person doesn't know you and the assessments are going to be like 20 minutes to an hour. If you've A) got a complex condition, B) have any kind of difficulty advocating for yourself or explaining things, how are you meant to get across all that you need to a complete stranger in that amount of time? Like there's a lot of concern about what this means for people in all sorts of situations and why, why take it out when you finally built relationships with therapists that know you?
Voice-over [Kurt Fearnley]: Minister Stuart Robert pushes back against any doubt around these assessments, saying the NDIS was always designed with them in mind.
Stuart Robert: Independent assessments were always a function of the NDIS, as outlined by the Productivity Commission, recommended by the Productivity Commission, recommended by the Tune Review.
Voice-over [Kurt Fearnley]: But Greens Senator Jordon Steele-John says independent assessments on paper are very different than in practice. A pilot of these assessments ran between November 2018 and April 2019, which the Greens Senator says didn’t demonstrate the results they set out to show.
Jordon Steele-John: If things like independent assessments get up. Many of the other changes that are being proposed by the government are successful, the NDIS will turn a corner from a scheme that we are relentlessly attempting to preserve, to something that has to be navigated and resisted by disabled people in this country. And that is the very last thing that this scheme was meant to be. This scheme is meant to be centred around choice and control. This policy is a command and control policy that has no place in the scheme whatsoever.
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Voice-over [Kurt Fearnley]: Another concern from the disability community is that the people steering changes for the NDIS have little to no lived experience of disability. I asked Minister Stuart Robert, the biggest political power in the country when it comes to the NDIS, what he thought about this.
Kurt Fearnley: How can you make decisions about what’s best for people with disability when you yourself don’t have that lived experience?
Stuart Robert: Yeah, I'm not too sure I agree with you on that one. I grew up with my Auntie Sue and her two children, Alex and Joel, who my cousins Alex, unfortunately, passed away. So my life growing up was with my two little cousins who both had Down Syndrome, who were both unable to speak, unable to hear, as well as other substantial intellectual challenges. That was my growing up. Now sure wasn't in my immediate family, they were my first cousins, but we spent a lot of time together. So my experience in terms of people with disability has been substantial. But regardless, the scheme needed managerial expertise and leadership and strong ministerial guidance to bring the scheme to fullness. And that's what we've achieved.
Voice-over [Kurt Fearnley]: Senator Jordon Steele-John says while having family members or friends with a disability does play a part, it isn’t personal lived experience.
Jordon Steele-John: And it speaks to the critical need for people with lived experience of disability leading the solutions to these problems and in positions of power in the agency.
Voice-over [Kurt Fearnley]: Trish Jackson, an NDIS participant from Queensland, feels just as strongly.
Trish Jackson: Get some disabled people with lived experiences up in the hierarchy. Get the disabled people to run it. You have people that have no idea on disabilities, no idea what it's like day in, day out. And they’re making decisions that could change your life for the better and yet they don't understand. And so they just deny stuff.
Trish Jackson: So yeah, I think NDIS should be run by disabled people.
Jo Berry: Anyone could end up disabled at any time.
Voice-over [Kurt Fearnley]: Here’s Jo Berry again.
Jo Berry: No one thinks they're gonna end up in an accident or be diagnosed with a condition that's gonna, you know, disable them.
Jo Berry: I didn't think it would happen to me. I have had my condition my whole life, but it didn't become really bad until my teens. And from then on, it's progressed quite significantly. And so, if you’d asked little me if big me was gonna be in this situation, I would've said no. It doesn't mean it's bad, but it's not how I pictured it. I guess the point is that anyone may end up disabled and we want to live in a society that will provide for us, and care for us and include us.
Jo Berry: No one should be marginalised for any reason, like whether that be disability or whether that be your race or your gender or... So we live in a country that provides those things and yeah we pay taxes to make that happen.
Voice-over [Kurt Fearnley]: There is a strong held belief that having people with disabilities at the helm of the NDIS will help to get the scheme back on track. And in turn, change more lives for the better, like it has for Kathy and her daughter Emily, who we met in episode 1.
Kurt Fearnley: How has your experience changed both yours and Emily's life since you've been able to participate in the NDIS?
Kathy Herbert: I'd have to say it's been enormous. It really has. Emily is able to do the things she wants to do. What do you do on Mondays?
Emily Herbert: Meals on Wheels.
Kathy Herbert: Meals on Wheels with Tara.
Emily Herbert: Yup.
Kathy Herbert: And then on Tuesdays?
Emily Herbert: NRMA.
Kathy Herbert: NRMA service centre. And so what do you do there?
Emily Herbert: Wash cars. (To Kurt) I should wash your car!
Kurt Fearnley: (Laughs) I don't want you to see my car, Emily. I haven’t washed my car in about two years.
Kathy Herbert: You'd love to wash and polish Kurt's car, wouldn't you?
Emily Herbert: Yeah.
Kurt (asking Emily): If you could choose anything to do today, what would that be Emily?
Emily Herbert: I like the light rail depot.
Kurt Fearnley: Ah, go to the light rail depot. What do you like about that?
Emily Herbert: I'd give Locky a hug.
Kurt Fearnley: Who's Locky?
Emily Herbert: Locky the light rail, it’s a tram.
Kurt Fearnley: Ah, you’d get to give the actual tram a hug. Now I know why you like trains!
Kathy Herbert (asking Emily): I think you've got a pretty great life, haven't you Ems? The world's Emily’s oyster, really.
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Voice-over [Kurt Fearnley]: A decade ago, four prime ministers ago, the NDIS was still a dream. A dream that had some momentum, for sure, but a dream nonetheless.
One that had a political battle ahead of it, a funding battle, and a national roll-out to hundreds of thousands of people. Today, it’s here. From having lagged the developed world on disability, Australia can now be proud of its system.
Is everything perfect? Far from it.
In this series I’ve heard from people who’ve explained how the bureaucracy of the NDIS is beyond challenging. I’ve heard how some feel the launch of the NDIS was too rushed - and others think not rolling it out fast enough and may have even cost lives. Stories told at the Royal Commission show how far we still have to go.
But step back and look at what’s been achieved - and it’s not hard to feel a sense of pride.
That tens of thousands of Australians could come together to campaign for something that has changed not just their lives, but the lives of many, many, people to come.
I have struggled in the past to be critical of the NDIS, because I want it so badly to work.
I want to see the lives of people with disabilities be given the same choice and control that was given to me. I want them to experience, every other person with disability, to experience the idea - no, the fact - that they deserve to be part of the community.
The NDIS is a work in progress; to keep it on track we, not just politicians and bureaucrats, we need to keep fighting for it. We need to make sure it lives up to its principles and ambitions.
The road ahead - it’s long. But already because of the NDIS Australia is ‘A Nation Changed’.
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A Nation Changed is hosted by me, Kurt Fearnley.
If you enjoyed the series, feel free to leave us a review - it really helps others find the show.
Our Lead Producer is Jake Morcom. Jasmine Mee Lee is our Assistant Producer, and Jess Bineth is Executive Producer of the series.
This podcast is a collaboration between Hireup Australia and Audiocraft.
You can subscribe to A Nation Changed wherever you listen to podcasts or listen to episodes individually at Hireup-dot-com-dot-A-U forward slash A Nation Changed.
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