Scott Taylor: Honestly, I haven't had lunch yet. I'm not, I’m not that much of an eater. I only tend to eat when I’m really hungry.
Kurt Fearnley: I had cheese puffs. They were in the car, and they were delicious! But they’re not very good for you…
(Scott and Kurt laugh)
Voice-over [Kurt Fearnley]: I’m sitting with Scott Taylor in his kitchen.
Kurt Fearnley: They're like umm, they’re like Cheezels.
Kurt Fearnley: I don't know if cheese could cry, they're the tears of cheese puffed up.
Voice-over [Kurt Fearnley]: You met Scott in the second episode.
Scott Taylor: Hi, my name's Scott Taylor. I'm originally from Newcastle, but have been living in Sydney now for 18 months.
Voice-over [Kurt Fearnley]: Scott lives on one of the busiest streets in the Sydney CBD, but you wouldn’t know it. His apartment is quiet and cosy. Scott lives by himself, which is a fairly new thing and it’s something that he’s really grown to love.
Scott Taylor: Making that move from Newcastle to Sydney, it was a tough move. I was literally leaving my comfortable rural life kind of out in the sticks where it was very quiet, and I was moving right into the big smoke right into the city.
Kurt Fearnley: What did your family think about that?
Scott Taylor: It was very much a feeling of worry, concern. Oh my god, how is he going to do this? Is he going to manage? Is he going to be okay?
Voice-over [Kurt Fearnley]: Scott uses a power wheelchair. Living on his own in a city more than two hours from where he grew up isn’t something he ever imagined for himself.
Scott Taylor: Look, honestly, I just thought that life for me was just going to be very routine, very monotonous. It was one where my family had to make a lot of sacrifices, not just physically and emotionally, but definitely financially.
Scott Taylor: I didn't really know where my life was going to head or what turn it was going to take. So I just thought, well, what's the point of setting goals when there's not really anything to strive for? And to look at where I am now and what's happened, it really flipped my world on its head.
Scott Taylor: The NDIS has truly opened up a whole new world for me. And it's a world that I never even knew would exist.
Voice-over [Kurt Fearnley]: I’m Kurt Fearnley and this is A Nation Changed - a four part series about the National Disability Insurance Scheme.
Today, the NDIS supports more than 400,000 Australians with disabilities, many receiving this type of support for the very first time. But it hasn’t always been this way. An independent report published in 2011 ranked Australia last out of 27 OECD countries when it came to poverty risk for people with disability. But things, they are improving. Scott says the choice and control that come with the NDIS has allowed him to forge a future for himself.
Scott Taylor: For me to be able to have that choice and control is, yeah, it's so important to me. It's integral. It was a moment where I, probably for one of the first times, I really felt myself as an equal.
Voice-over [Kurt Fearnley]: Scott’s story is one that speaks to the success of the NDIS. But it’s not the reality for everyone. Many Australians with disabilities continue to face significant hurdles when accessing NDIS support – some facing flat out rejection.
In this episode, we hear different stories from people relying on the NDIS. You’ll learn about what it takes to get on the scheme, where the process is working, where it isn’t. And why one of the greatest social reforms in Australia’s history is leaving many behind.
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Voice-over [Kurt Fearnley]: There are a bunch of boxes you have to tick to be approved for the NDIS.
Voice-over [Kurt Fearnley]: You need to be between 7 and 65 years old, an Australian resident, and have a permanent or significant disability. The first step is to contact the National Disability Insurance Agency - the NDIA. If you’re somebody who received support under the old state based system, the NDIA may contact you first. Then you get connected with your “Local Area Coordinator”, or LAC, who either becomes your NDIS planner or sets you up with one. From there, you set up a planning meeting to talk about your situation, your support needs, and also your goals for the future. Yeah, it’s a pretty complicated process. Scott remembers there was a lot he needed to prepare before he went into that first meeting.
Scott Taylor: The process entering into this scheme, there was a lot of paperwork. Doctor's notes, assessments from physiotherapists, from an occupational therapist. Basically, to outline the nature of my disability and obviously the support that I would require.
Voice-over [Kurt Fearnley]: In his first meeting, Scott talked about what support he was after.
Scott Taylor: Just services like respite care and equipment-wise and a lot of physiotherapy sessions and occupational therapy sessions. They were obviously the things that were really difficult for me to really access on a consistent regular basis. Which for someone like me with my disability, I need that kind of consistent and regular umm attention.
Voice-over [Kurt Fearnley]: Once the first meeting’s over and the paperwork is in, Jo Berry - an NDIS participant from Sydney, who we spoke to in the our first episode - says the next step is to wait.
Jo Berry: You wait and hope, and wait and wait. There's a lot of waiting. And it's just quite frustrating, especially if you're waiting on something that's actually an impactful thing in your life.
Voice-over [Kurt Fearnley]: After waiting and waiting, Jo was finally approved. So was Scott.
Scott Taylor: It's certainly a period now that I look back on and go well, even though it did take that little bit of time to put that effort in, it's certainly proven to be more than worthwhile.
Kurt Fearnley: Has the NDIS helped you? Have you got those goals?
Scott Taylor: I have got those goals and more.
Scott Taylor: If you'd spoken to anybody about growing up and sort of what I wanted to do, then that one goal was always to work for one of the massive companies that I now work for.
Voice-over [Kurt Fearnley]: Scott works at Sydney’s Apple Store.
Scott Taylor: I live pretty much on my own. I have a team of people that come in and help me for a few hours, a few days a week. But apart from that, I'm pretty much living on my own. I do my own thing. I go to work, I come home, I hang out with workmates. I go down to Darling Harbor, Circular Quay... The NDIS has transformed my life completely.
Voice-over [Kurt Fearnley]: But it hasn't been so easy for other Australians living with a disability.
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Trish Jackson: Oh well, for breakfast, I had toast with strawberry jam on it. Very yummy. And then for lunch, I pigged out and had a pie!
Voice-over [Kurt Fearnley]: This is Trish Jackson.
Trish Jackson: Hi, I'm Trish Jackson and I am a thalidomide survivor.
Voice-over [Kurt Fearnley]: Trish is an artist and photographer from the Moreton Bay region in Queensland.
Trish Jackson: So for those who don't know what thalidomide is, it was a drug that was around in the late 1950s, early 60s, and it was commonly used for morning sickness. Unfortunately, the tablet was never properly researched or tested and it caused severe birth deformities for those babies.
Voice-over [Kurt Fearnley]: Thalidomide prevented Trish’s arms from growing, so instead she uses her feet for pretty much everything. To paint, take photos, and to move around on her scooter.
Trish Jackson: I drive it with my feet. There aren't many around that have little arms like myself.
Voice-over [Kurt Fearnley]: When Trish first heard about the NDIS, she loved the idea.
Trish Jackson: From what I read on paper, it sounded absolutely fabulous for all disabled people. And for all of those people that hadn't had funding before. You know, it was a great opportunity for them to thrive and to get things that they hadn't got before.
Voice-over [Kurt Fearnley]: But getting on the scheme was a different story. Trish had previously received support through Disability Services, the state system in Queensland. When the NDIS started, her name was given to the NDIA.
Trish Jackson: And I got a letter probably nine months prior to that first meeting saying that I was on the waiting list and I would be contacted soon.
Voice-over [Kurt Fearnley]: After waiting for nine months, Trish finally got a call to set up her first planning meeting. But it didn’t go the way she had hoped.
Trish Jackson: Gosh. I got rung up on a Friday and I was told to be at a NDIS office on a Wednesday morning at a certain time. And there was no, "oh, I can't do that. I've got to change it." It was just, be there or you'll miss out, basically.
Trish Jackson: When I went there, the lady said, what would you like? And I said, I really would like doors that are self opening because I use my mouth to hold my key and put the key in the door lock and I would like to stop that. And she just looked at me and said, “oh, you'd have to be assessed as to why you would need something like that.” Umm the fact that I've got no arms, and how I told her I did, made no difference. And yeah, the first meeting didn't go well.
Voice-over [Kurt Fearnley]: After her first meeting, there was more waiting.
Trish Jackson: Just wait and there would be a plan sent out to me. And that was it. And that was my plan for the year. And that was it. I couldn't change, couldn't challenge it. It just said my husband was my carer. And he would do everything for me. I liked to garden, I think, and do photography. And I think that was about it. And that was that was all she wrote as my goals.
Trish Jackson: My goals were to have an accessible house, to have an assistance dog, to have home modifications, lots of things like that, but it just wasn't written in my plan.
Voice-over [Kurt Fearnley]: Trish pushed back against her planner to get the self opening doors she’d asked for. But making any sort of change to your plan can be incredibly difficult. It was this way for Jo too.
Jo Berry: The review system is probably my biggest frustration with it all. So you apply and say this is not right, even if it's a simple thing like changing a tick box you've got to go through a whole review. You can call as many times as you need but you're not necessarily going to get anywhere.
Jo Berry: I applied for some foot orthotics and they got approved but they wrote it in the plan wrong. And I ended up taking nearly 18 months for that whole process to be complete. And when you’re dislocating your ankle as a result of it, it’s quite frustrating.
Voice-over [Kurt Fearnley]: The NDIS responded to Trish’s request for self opening doors. They said before they would sign off, she would have to find an occupational therapist. The OT would assess whether or not they were even necessary for her situation. Trish said hearing this was tough, but not as tough as finding an OT to make the approval.
Trish Jackson: I've had OTs all my life. One OT told me that I was extremely lazy because I didn't hang my washing on the line. My arms don't even reach my ears so I'm not quite sure how I’m supposed to get the washing on the clothesline, but she just kept telling me I was extremely lazy. That's the kind of attitude I get.
Voice-over [Kurt Fearnley]: After a long search, Trish found an OT.
Trish Jackson: All I wanted was a door that I could push buttons on it and it would open and let me in. And it was just a nightmare from day one, basically. The builder that was approved for me, he just did absolutely awful work. It was poor quality. He overcharged. And so when I rang NDIS and I said, hey, this door isn't very good. It's not suiting my needs. It's dangerous because it nearly knocked me over because of the way it opened. They basically weren't interested at all.
Trish Jackson: I went to the Queensland Building and Commission or whatever, and spoke to them and once they got involved, NDIS changed their tune and then they had to pay another ten thousand dollars to get the workmanship fixed.
Trish Jackson: It was awful. The stress it caused me was just unbelievable. It was (sigh), yeah. I've never felt stress like that before. It was just horrible. I can honestly say that NDIS has broken my spirit.
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Jordon Steele-John: There are many arbitrary boundaries that sit around the NDIS and the way of thinking about individuals that don't really make sense if you hold them up to the cold light of day.
Voice-over [Kurt Fearnley]: Jordon Steele-John is a Senator for the Australian Greens. He’s also the only person with a disability in the entire parliament. He’s also in the process of applying for the NDIS himself.
Jordon Steele-John: The NDIS fully phased into my area in 20… ooh I’m testing my own memory now... in 2018, I believe it was? Previous to that I've had wheelchairs, I've had physio. La la dah dah, you know.
Jordon Steele-John: I've done my Hogwartian style letter and my initial conversation with somebody that was then going to pass me on to the secondary team that you go through. But so far, I've already picked up worrying signs.
Jordon Steele-John: The most serious of which was the fact that they had no information on me. So they have my name and my email. And that was it. They didn't know where I lived. And they, most worryingly, had no understanding of any of the previous services or equipment that I've had throughout my life. When I said that I was part of the former CAP funding system that existed here in W.A., the response of the person that I spoke to was what's the CAP system to which I go oh, oh dear. This is a… this is a problem.
Voice-over [Kurt Fearnley]: Senator Steele-John says his disability support information not being transferred over to the NDIS, is just one in a series of problems. He believes there are three key issues holding the NDIS back from where it needs to be. The first are staffing caps placed on the NDIA. We talked about these in episode 2.
Jordon Steele-John: The Productivity Commission in 2009 said that the scheme would need at least 10,000 employees. It currently has, give or take, 4,500 odd. And the difference is made up by an outsourced workforce.
Jordon Steele-John: So it's an unnecessary, additional bureaucratic layer which actually means that people can never talk to the person or find it very difficult to talk to the person that can actually make a decision. And it means that the agency isn't able to develop and retain the institutional knowledge that is needed to actually learn as it solves problems. It also means that the agency isn't able to take the time to develop the relationships with the community that is needed to run a scheme like the NDIS.
Voice-over [Kurt Fearnley]: Trish also experienced this. Her frustration with NDIS staff only became worse when she requested financial support for her mobility scooter. Trish says what should have been a simple solution turned into an incredibly stressful process.
Trish Jackson: Now I had already bought a scooter and had modified it to suit me because I drive it with my feet. But this scooter only had really tiny, tiny wheels. So it was only good on very flat surfaces. Nobody would modify a scooter.
Trish Jackson: Now I told NDIS that nobody would modify it. And they said I had to go and get letters from scooter shops to say that they won't modify it. I went around with my husband, he took me around and I think we went to about five scooter shops in the area, got letters to say that they won't modify scooters. So I handed that documentation into NDIS and they said that wasn't good enough. I had to get my OT to get the same letters. Which it just, it blew my head, like, why? Because I got the letters, why weren't they good enough?
Voice-over [Kurt Fearnley]: With no other options locally, Trish started looking for a scooter online.
Trish Jackson: I found this scooter in Denmark that already comes modified to put the control wherever you like on the machine. So it comes with it on the floor, so perfect for me. NDIS said, no, we don't import stuff.
The company said that they were appointing an Australian distributor. I went down to the scooter shop, which was in Wagga Wagga and I'm in Queensland. I went down and I test drove it. It was absolutely beautiful. Fitted me like a glove. Most perfect thing I've ever, ever had. Went back, OT saw me ride it. She said it's perfect, sent all the paperwork into the NDIS.
Trish Jackson: NDIS said that it was too expensive for a scooter. They wanted to pay an extra $7000 on an electric wheelchair that I wouldn't be able to use instead of paying that much for a scooter that I could use. It just didn't make sense, like, (exacerbated sigh), why pay an extra seven grand for something that I wouldn't be able to use?
Trish Jackson: It's really funny, everyone just assumes that I get everything I want or everybody gets everything they want under NDIS. They don't realize that we have to fight and we have to battle and we have to get report after report after report and then get rejected. And then you have to start again. (Exacerbated sigh) People's perception is that we just get everything handed to us on a platter and that's not how it works. They don't understand the bureaucracy of trying to get things from NDIS.
Voice-over [Kurt Fearnley]: Jordon Steele-John, the Greens Senator also trying to get on the NDIS, says another major roadblock is a systems issue.
Jordon Steele-John: The I.T. system that the agency uses is not really fit for purpose and it has never been fit for purpose. But it’s also created ridiculous situations where the system requires you record a primary and secondary disability. Now, there is no such thing as a primary and a secondary disability. If I'm disabled, but I'm also blind, you tell me which one is my primary disability.
Voice-over [Kurt Fearnley]: Greg Bruce, an NDIS participant from the Hunter region in New South Wales, found the online system frustrating too. Greg is vision impaired and believes the system wasn’t designed with him in mind.
Greg Bruce: I think initially it had issues with being accessible for people that were visually impaired. The software we had was not reading the information fully. There was stuff put up as an image file that had text on it, and of course our screen reading software doesn't read what's on an image. So (laughter) it made it really hard.
Voice-over [Kurt Fearnley]: Jordon Steele-John says this goes against the underlying principles of the NDIS.
Jordon Steele-John: I think it should be a scheme that exists for all disabled people, that we should work to expand the scope as much as possible.
Jordon Steele-John: Underpinning all of this, we have a cultural challenge, the leadership of the agency. A vast majority of the leadership of the agency, and most certainly the minister and many members of the board don't understand what disability is all of these years later so far into this scheme.
Martin Hoffman: When I first started, which is almost a year ago now, being quite honest about it, I didn't have great experience in the disability sector itself. I had a lot of other important experience, I hope, and capabilities, but not directly in the disability sector, so.
Voice-over [Kurt Fearnley]: Martin Hoffman is the current CEO of the National Disability Insurance Agency.
Martin Hoffman: Certainly, one of my priorities was to learn, meet people, talk and really get a deep sense of what the underpinning philosophy or intention of the scheme was. The focus has to move to: how do we improve the experience and how do we improve the use of plans to achieve the outcomes, the goals, the aspirations of people.
Voice-over [Kurt Fearnley]: In December 2019, when Martin was one month into the job, an independent review of the NDIS was released. The Tune Review, conducted by retired public servant David Tune, is the most significant review into the performance of the NDIS so far. One major finding was that participants felt NDIA staff failed to grasp what it was like to live with a disability.
Martin Hoffman: We make about 10,000 decisions every week be it for access or for planning or for reviews or appeals or whatever. About 10,000 a week. And that's being done across 150 different offices and about 5000 people directly involved in that sort of process.
Martin Hoffman: Many, many of our staff, in fact, more than any other government agency, identify themselves as people with disability. But gee, as I said, you know, 10,000 decisions every week and even more interactions, does every one of those go as sympathetically and as knowledgeably as you might want in the ideal? No, probably not.
Voice-over [Kurt Fearnley]: Greg Bruce from the Hunter, says his first experience with the NDIA and his Local Area Coordinator - or ‘LAC’ - weren’t good.
Greg Bruce: My first LAC, that's where I felt things fell down. Which made me feel like I was a child.
Voice-over [Kurt Fearnley]: But when he changed to a different LAC things were much better.
Greg Bruce: My current LAC, the way she puts stuff is incredible. Is very supportive, understands. I think it comes from the background the LACs have. If the LAC hasn't dealt with somebody with your disability, they don't understand. And I think I'm lucky with my current LAC, she previously had some dealing with people with vision impairment, so she had a better understanding of what we were up against in life.
Voice-over [Kurt Fearnley]: Jo Berry says she’s also been lucky with her LAC’s.
Jo Berry: I've been fairly fortunate in terms of having Local Area Coordinators that are generally fairly good. But I have had people that have Local Area Coordinators that have really missed the point. Cause what it is, is a bit of Chinese whispers. If you tell someone something and then they tell the next person something that they've kind of misunderstood something or missed something out, then you then don't get it. Whereas if you’re speaking directly with someone, you’re much less likely to have those little errors.
Voice-over [Kurt Fearnley]: NDIA boss Martin Hoffman says the agency continues to invest in training for their staff.
Martin Hoffman: Particularly of our frontline staff, on disability types and particular cohorts be it Indigenous, be it culturally and linguistically diverse, to try and give people that empathy and understanding.
Kurt Fearnley: What is this training?
Martin Hoffman: There's a range of modules about how to do the job, how the planning system works, what does ‘reasonable and necessary supports’ mean. So there's a range of structured training programs at the start and refreshers.
Martin Hoffman: At the end, there is a point that we have to make decisions about funding and those funding decisions impact on people's lives. And so there can be disagreements. The view is sometimes, well, we didn't understand the person well enough. That might be the case.
Martin Hoffman: The great thing and the hard thing is, this scheme is attempting to be individualized and personalized. That's why it has a subjective test for funding, which is ‘a reasonable and necessary support’, rather than a set of objective, hard rules about if you've got this, you get that. And I completely get why some people would say you don't understand me well enough, that may well be true in sometimes. In other times, the agency has to make a decision consistent with the act and consistent with the evidence.
Voice-over [Kurt Fearnley]: Senator Jordon Steele-John says while this is a step in the right direction, he’s not sure it’s enough.
Jordon Steele-John: There's all the old stories of people saying, oh, excuse me, just want to clarify you're saying Down Syndrome is a permanent disability? Or you're an amputee, is that a permanent condition? Like those, they retain a mythic status within the disability community.
Jordon Steele-John: Disabled people's lives, our lives are complicated. We are subject to some of the most entrenched forms of discrimination that still exist in our society. We're constantly struggling against either the result of that discrimination or other things happening in our diverse human lives.
Jordon Steele-John: To be able to make something like this work, particularly in the context where our dominant experience with previous service provision has been systemic failure, there is not the demonstrated understanding of a social model of disability. Of the idea that somebodies barriers, the discrimination that they face, comes from society rather than being a natural by-product of their impairment and difference.
Jordon Steele-John: That is where we are now. That is where we are as a disability community.
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Voice-over [Kurt Fearnley]: The David Tune review into the NDIS made 29 recommendations. In August the federal government released it’s official response and the Minister for the NDIS, Stuart Robert, outlined the government's next steps to get the scheme back on track. One step is something called the NDIS Participant Service Guarantee.
Martin Hoffman: Yeah this was a commitment that the government made at the last election, I think it's supported by both sides of politics, and was really saying, look, things were just taking too long and it would benefit by having some defined time standards for what people could expect.
Voice-over [Kurt Fearnley]: The goal of the guarantee is to reduce the amount of time people wait at each stage of receiving NDIS support. This includes scheduling a first planning meeting, having their plans approved and cutting time spent on the review process.The aim was to have this guarantee in law by July 1st this year. But Martin Hoffman - CEO of the NDIA - says because of the coronavirus pandemic, it’s been delayed.
Voice-over [Kurt Fearnley]: There have been other announcements following the Tune Review – one which we’ll talk about more in our next and final episode. As you’ll hear, it’s causing some serious concern in the disability community.
Nas Campanella: A lot of people are quite worried that it's, it’s a way of weeding people out of the scheme.
Jo Berry: 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’ve finally built relationships with therapists that know you?
Voice-over [Kurt Fearnley]: And you’ll hear how an ongoing Royal Commission is shining a bright light on how deep the problems in the disability sector go.
Nas Campanella: I would be lying if I said that this hasn't affected me at all.
Jordon Steele-John: Thirteen hundred people die before they get the support they need, not our problem? And he… mmm, wow. That is so profoundly inappropriate and unacceptable.
Nas Campanella: This is my community. This is our community!
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A Nation Changed is hosted by me, Kurt Fearnley.
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.
There are transcripts too at that same address – hireup-dot-com-dot-au forward slash A Nation Changed.
