Voice-over [Kurt Fearnley]: In this episode, we’re going to hear a lot about these:
George Taleporos: independent assessment.
Bruce Bonyhady: independent assessment.
Nicole Rogerson: independent assessment.
Voice-over [Kurt Fearnley]: You’ll hear some strong views along the way.
Dougie Herd: Nobody is putting me in a box and giving me a score.
Nicole Rogerson: I’ve test-driven this. This is shit, so do better.
George Taleporos: For a lot of people it can be really traumatising.
Voice-over [Kurt Fearnley]: You’re going to hear from people who’ve had an independent assessment - and been happy with the experience, but also from those who have been left upset by the process. You’ll hear from the new Minister for the NDIS about why the government is committed to introducing independent assessments. And why independent assessments are just the beginning of her planned reforms.
Linda Reynolds: From everything that I’ve seen, independent assessments won’t put ah the NDIS on a sustainable footing alone. There’s a lot of things that need to be discussed.
Voice-over [Kurt Fearnley]: We’ll hear from a journalist whose stories have kept independent assessments at the top of the news.
Rick Morton: I started getting lots of leaks from actual serving and and former Disability Insurance Agency staff.
Kurt Fearnley: So you always saw that independent assessments would be the only way to enter into the NDIS.
John Walsh: That’s always been the intention.
Bruce Bonyhady: One of the major deficiencies with robo-planning is it says here your functional impairments and now fit your goals within that funding envelope.
Voice-over [Kurt Fearnley]: I’m Kurt Fearnley. Welcome to episode five of A Nation Changed.
*END MUSIC BED
NDIS independent assessment promotional video with background music: They will use internationally recognised, standardised assessment tools to make sure assessments are fair and consistent for everyone.
Voice-over [Kurt Fearnley]: But it's these ‘standardised assessment tools’ that has the disability community worried. This process involves assessors putting people’s details into a computer and having it allocate funding according to an algorithm. Some call that, ‘robo-planning’. But the government says independent assessments will mean people who can’t easily navigate the current system will have better access to the NDIS. When did we start hearing about independent assessments becoming part of the scheme? To answer this question we need to go back to episode four. I spoke with NDIA boss Martin Hoffman at the end of last year and he said that independent assessments were going to make getting on to the scheme more straightforward.
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 their, pursue their goals and aspirations.
Voice-over [Kurt Fearnley]: But since my interview with Mr Hoffman late last year, the issue of independent assessments has blown up. We’ve seen a sustained campaign of confidential NDIA documents leaked to the media, a parliamentary inquiry into the issue of independent assessments and Senate estimates have grilled Mr Hoffman about this issue. Not to mention protests at NDIA headquarters in Canberra.
Crowd chanting: No NDIS assessments, no medical model. No NDIS assessments, no medical model.
Voice-over [Kurt Fearnley]: Independent assessments aren’t officially part of the NIDS yet. And scheme participants have been asked to take part in two separate independent assessment pilots. So what’s the independent assessment process really like? Rachael Sowden lives in regional NSW with her family. She spoke to the show’s producer Sarah Shands about her experience participating in the independent assessment pilot.
Sarah Shands: Hello!
Rachael Sowden: Hello!
Sarah Shands: Alright I’ll umm just grab my questions...now Rachael, what’s your experience been with independent assessments?
Rachael Sowden: Well my experience was I was terrified about them to start with and I wasn't sure that whether they’d be any good or not, but I sit on the NSW Disability Council and also the NSW Carers Council so I thought it was like kind of my, not my duty, but I I thought it was important to participate and see what they were like. Got an offer to do one with our daughter who is twenty. There were lots of different questions asked around what Sarah-Kate does, so we sort of talked about what her days looked like and.
Sarah Shands: Is the question as straightforward as so can you tell me what your day is like?
Rachael Sowden: It can be and like the assessor in trying to make Sarah feel more comfortable like got her to show him her dog and some of her artwork. Um and it was you know, what can you do on a good day and what can you do on a, on a not so good day. And on those days what you know can you still get up or are those the days you need your dog to come and give you a cuddle. And it wasn’t talking down to her and it wasn’t too invasive. And my daughter is Aboriginal so I was,you know, doubly concerned that it might not be culturally appropriate. Um the person who did it he spent five hours on Tele-Health with us and he was great, it was culturally appropriate for her and he was very respectful of her um while he was doing the assessment. And the assessment came back as an accurate reflection of where she is. Which you know, while while distressing that’s exactly the reason why she’s on the NDIS because she has she has significant needs.
Voice-over [Kurt Fearnley]: While Rachael may have had a positive experience, there are some people who have also taken part in the pilot who have been left traumatised. George Taleporos is a disability advocate and he took part in the independent assessment pilot.
George Taleporos: I found it really confronting and very intense and I found some of the questions quite difficult to answer. I was asked to talk about t-t-to say how my life would be without support and I just felt to be asked that question over and over with all different aspects of my life, it was incredibly exhausting and and quite painful really, to be put through.
Voice-over [Kurt Fearnley]: George’s experience is far from unique. Nicole Rogerson is the CEO of Autism Awareness Australia. Her son Jack has autism and an intellectual disability.
Nicole Rogerson: What really bothered me and I think it's important for me to clarify that Jack has autism and an intellectual disability so our experience might be very different to somebody with a different type of disability. But in Jack’s case he’s twenty-five, he has a disability but he doesn’t understand his disability in the context of how it makes his life terribly different from anyone else's. And we don’t spend a lot of time talking to him about, you know, the scaffolding that goes on around his life to make his life be as independent as it is. You know it’s just not our role to make him feel bad about his disability and so so, to all of a sudden for the questions to start bang on on and totally focus on the things he can’t do. What offended me was not necessarily the questions, I know what they are trying to get to the bottom of, but it was they were all negatives, they were all about his disability. Never once asked him what he was good at. Um and then proceeded to ask him questions that were very simple and he could answer but only partially truthfully and I don’t mean he’d tell a lie, it’s he just doesn’t necessarily know the answer. So one of the questions was do you manage your own finances? Can you take care of umm your financial life and planning? And he answered, sure no problem, yep I do all of that. So I’m sitting there thinking, no he doesn’t. Um he knows how to use a keycard. Like he can tap and go and buy things. Um we’re increasingly trying to teach him to look on the app to see the balance etcetera but that’s the limit of it. So it was a series of those types of questions. You know, do you need help at work? Does your disability affect how you work? And he answered oh, i’m really good at my job. And it was almost like well does that mean he’ll get rated down on that and do I have to interject to say oh no that’s right Jack remember they only give you a few hours a week because you’re the disability person, you know like, really!
KURT:
The thing about the NDIS is that even the smallest changes can have a big impact on people’s lives. So with something big, like independent assessments, the potential impact is massive. You’ve met Jo Berry in previous episodes, she’s feeling concerned about her future.
Dog barking in the background.
Jo Berry: The gate is just at the end. Do you need help opening it?
Gate opening.
Kurt Fearnley: There we go.
Kurt Fearnley: Billie is actually well behaved. Right, he’s got that out of the way. How excited he was to see everyone and now he’s ready to sit down and have a yarn.
Jo Berry: I know. Yep
Kurt Fearnley: Jo, can you tell me about your feelings behind the independent assessments?
Jo Berry: I think like, the really core feeling you get is just anxiety. I have a social life, and I have access to therapies and things that keep my body in good form, oh and equipment as well, and to be honest the fear of losing those things means losing parts of my life a, the way they are and b, with as much independence as I can have.
Voice-over [Kurt Fearnley]: As more stories surfaced about real problems with the independent assessment pilot, the grassroots community campaign aimed squarely at getting the government to scrap them spread rapidly across the country. But the NDIA is reporting that the scheme is on track to cost more than 40 billion dollars a year within three years. This is a 10 billion dollar blowout on recent federal budget projections. So can we afford to do nothing? One person who can shed some light on the need for independent assessments is John Walsh. You may remember him from episode one. He’s an actuary and also known as an architect of the scheme.
Birds tweeting, door opening.
Kurt Fearnley: Hey how you doing?
Michelle Walsh: Hi
Kurt Fearnley: I’ll go straight to the straight to the what I think is the most important question around the NDIS and that’s, is the NDIS broken?
John Walsh: Um not permanently. I think it, well let me answer it in a different way Kurt. The NDIS as proposed by the Productivity Commission has never been implemented. So it’s not broken because it’s never been there. Um what we have now is an opportunity to go back to square one and build it properly. The trouble is, what’s been done to date makes it much more difficult to start from. Like that old joke, if I was going to Dublin I wouldn’t start here. So to implement the NDIS as was originally intended needs a lot of serious rethinking and reinvestment.
Kurt Fearnley: So where does, where do independent assessments fit in that?
John Walsh: They’re part of it because the three technical building blocks of the NDIS are independent assessments, reasonable and necessary packages at a package level and full flexibility for people to use that package in the way that most suits their personal support needs. But as well as those three technical building blocks there’s also a whole ecosystem of community empowerment, capacity building, sector development that hasn’t been done.
Kurt Fearnley: And never was done?
John Walsh: Never was done.
Kurt Fearnley: So tell me about your version of independent assessments.
John Walsh: So independent assessments are a way of ensuring that the right people have access into individual packages of support. People who really need it get access to individual packages of support. And the level of support they get, the level of package they get, is appropriate to their support needs. And unless you do that in a way that’s independent of advocacy or personal biases it becomes unfair and it becomes unstable.
Kurt Fearnley: So you always saw that independent assessments would be the only way to enter into the NDIS?
John Walsh: That’s always been the intention.
Voice-over [Kurt Fearnley]: The NDIS we have today is not the NDIS John Walsh and the Productivity Commission envisaged all those years ago. And if it was always the intention to have independent assessments, why are they only being introduced now? Bruce Bonyhady was the first chairman of the NDIA and helped create the NDIS we have today. He’s now the Chair and Director of the Melbourne Disability Institute and recently presented his submission about independent assessments to the Federal Parliament's Joint Standing Committee on the National Disability Insurance Scheme. Quite the mouth full!
Bruce Bonyhady: So I’ll just turn my video on cause I just realised it’s off, so you can now see me. Yep that’s all good.
Sarah Shands: Yeah you’re right. There we go. Oh technology right? Ha ha ha.
Bruce Bonyhady: Yeah I know I know. It’s just umm there to frustrate us I think. But there you go.
Sarah Shands: Let’s kick things off with what are independent assessments?
Bruce Bonyhady: So independent assessments are a process that the National Disability Insurance Agency or NDIA has designed. It’s an automated process to drive and determine who was going to be eligible for the NDIS and what sort of funding they’re going to receive. Ah it should actually be described as robo-planning.
Voice-over [Kurt Fearnley]: Bruce Bonyhady is concerned that the government is looking for a simple solution to a complex problem. And as he sees it, that simple solution just doesn’t exist. In other words, independent assessments generate plans based on a computer algorithm. And this can never take into account the complexity of a person's life.
Bruce Bonyhady: The process starts with people’s functional impairments, so it’s a deficit based approach. The current approach to planning starts with people's goals because we always said that the NDIS needs to provide equal opportunity for people with disability. We need to recognise their goals, recognise that their goals change over their lifetime and the plans then need to reflect the goals and provide sufficient funding to meet those goals. One of the major deficiencies with robo-planning is it says here are your functional impairments and now fit your goals within that funding envelope. And so instead of recognising the breadth of diversity within the disability community - not just in terms of functional impairments but in terms of people’s family circumstances, in terms of their environment, in terms of whether they're living in metropolitan Australia or the most remote corners of Australia and in terms of their goals, all that now needs to be squeezed into whatever funding envelope is derived out of this automated process.
Voice-over [Kurt Fearnley]: While negative experience of the pilot have fueled a community campaign to put a stop to independent assessments, there have also been several highly confidential NDIA documents leaked to journalists. One of the more controversial documents journalists got their hands on was an early version of the Tune Review. Now, this review was an independent look at the NDIS act. And politicians often point to the Tune Review’s recommendations of independent assessments as one of the justifications for them. But were they in the earliest drafts?
We need to speak to Mr Tune.
Phone outgoing call sound: Ring. Ring.
Voice-over [Kurt Fearnley]: I’ve tried to get David Tune on this podcast to get his take on independent assessments. To find out once and for all, if they were actually among his initial recommendations or whether he faced pressure to include them. But his only response has been via sms to the show’s producer:
Text message alert sound. Bing!
Voice-over [Joshua Bartel]: Sorry but I do not do media at all.
Voice-over [Kurt Fearnley]: But David, If you change your mind you’ve got my number. I'm responsible for that long list of missed phone calls.
Voice-over [Kurt Fearnley]: What has the impact been of those leaked documents? The Saturday Paper’s senior reporter, Rick Morton.
Rick Morton: Between myself, Rob Harris at the Age and Luke Henriques-Gomes at the Guardian we had the leaked legislation umm we had the FOI document of of the original David Tune Review of the NDIS which umm included track changes from umm both the Department of Social Services and National Disability Insurance Agency kind of putting in what they wanted about independent assessments ah and then I started getting lots of leaks from actual serving and and former Disability Insurance Agency staff. Now those leaks were memos from the Chief Executive Officer, they were pieces of intel about work that Mckinsey & Co had done in terms of the scheme workforce of the future. Um this was little bits of information indicating that they could get rid of twelve-hundred planners, because of these reforms. That they could get plan build times down from about eight hours and forty-five minutes to about forty-five minutes. All through this kind of process of automation.
Voice-over [Kurt Fearnley]: For the first time these leaked documents confirmed the concerns of the disability community. That independent assessments will be used for cost cutting and automating the planning process. So the biggest leak Rick Morton got?
Rick Morton: The biggest one I think I got, leak wise was the existence of the new sustainability action task force. Then I got some memos that come alongside that from the CEO Martin Hoffman, um essentially saying that they are embarking on a six-month programme of work to try and curtail spending in the scheme. And it’s spending not just in terms of access you know they want to slow access to the scheme, so limiting the number of people who can get in, but also limiting the value of plans, which is one of the big bugbears certainly from the government’s point of view - which is that they think plans are growing in value too fast, year on year. Um so this was the first real sign that all of these things were targeted toward cost cutting.
Voice-over [Kurt Fearnley]: In mid March, there are confidential documents landing in journalists’ inboxes. The grassroots campaign against independent assessments is growing. And at the same time, the Prime Minister is facing issues of his own.
Nine News report - archive: The Prime Minister's cabinet reshuffle is aimed squarely at fixing his women problem. Christian Porter and Lynda Reynolds have been shunted from their jobs as Attorney General and Defence Minister, but stay in cabinet.
Voice-over [Kurt Fearnley]: Linda Reynolds has taken over as Minister for the NDIS and was met on day one with some serious pressure from the disability community which prompted her to pause the rollout of independent assessments. It was a move that surprised many and raised more questions about what the future looks like for the scheme. So it’s off to Canberra to find out what the new Minister has planned.
Kurt Fearnley: Mate, so, i’m off to ah Parliament House. How’s your day?
Taxi driver: Not bad, so can we go this way out or no?
Kurt Fearnley: I have no Idea…
Kurt Fearnley: Minister
Linda Reynolds: Hello lovely to meet you.
Kurt Fearnley: Thanks for finding the time
Linda Reynolds: Oh you are most welcome I was delighted to do it and welcome you to Canberra.
Hand clap.
Kurt Fearnley: Ahh am I following? Do you mind if I take a few minutes just to set up, it shouldn't take long.
Linda Reynolds: Please come on in. We have plenty of time.
Kurt Fearnley: One of the biggest concerns is that independent assessments will be used for austerity and there are stories about um, prominent Australians with disability going into an independent assessment trial and losing eighty per cent of their funding which has a huge impact on outcomes, life, employment. What is your position now on independent assessments?
Linda Reynolds: So my my belief is that at the moment is with the current level of concern about them, that there isn’t a pathway through the Senate at the moment. But the reason I've put a pause on this legislative process is so that I can do what I’m doing. I’m consulting with groups all you know round the nation to hear from them.
Kurt Fearnley: The larger peak bodies came back and said independent assessments, compulsory independent assessments weren’t, weren’t going to work.
Linda Reynolds: Mmm, well independent assessments have - Independent functional assessments have always been you know they’ve in the legislation and they’ve always been intended to be introduced and I think that an independent functional assessment is really important. So what I’ve said is that we will be proceeding with some form of independent functional assessment. But what form they take you know there are concerns and a lot of the concerns that have been raised with me I think are quite reasonable and do need to be addressed. But I’d point out Kurt, that is the purpose of a trial, is to, so any of the trial outcomes are not aren't don’t, aren’t being used in someone’s plan. They are just that, they’re trial outcomes. From everything that I’ve seen, independent assessments won’t put the NDIS on a sustainable footing alone. There’s a lot of things that need to be discussed, considered.
Kurt Fearnley: In your initial assessment, is the NDIS broken?
Linda Reynolds: I don’t think the NDIS is broken but what I think is that we do need to have a look at where we’ve come and having a look at where we want the NDIS to go as an insurance scheme. We’re approaching now 450-thousand Australians to give you an idea of the scope and we could in the next couple of years, we’re likely to go up to between 530 and 550-thousand which is well beyond what we’d initially thought. So there are cost pressures obviously, ah for the fund.
Kurt Fearnley: Have you spoken to David Tune since you’ve come into office?
Linda Reynolds: I have not yet, but that is absolutely, ha ha.
Kurt Fearnley: He’s a hard man to get a hold of.
Minister Reynolds: ha ha.
Kurt Fearnley: Back to the independent assessments. There has been a push to make independent assessments potentially from advocacy groups or people disability organisations to make them an option. Is that on the table?
Linda Reynolds: From my perspective at the moment I- if they’re not compulsory I can’t see how we can really have a fair system. So much of the feedback that I’ve had so far is that people are not seeing that it is consistent or fair. So I'll give you some examples and the next quarterly report will be out in the next couple of weeks I think from the NDIS and that clearly shows, very very clearly shows that your postcode matters. So take my own state. If you’re a participant from Halls Creek, in the Kimberly and you’re someone with you know a similar disability in Perth, um your postcode matters in terms of your package.
Kurt Fearnley: Part of me wants to go, well that kid in the Kimberly, I want to bring him up, or her up. I want to give him or her access to the same level of advocacy as as somebody in the city but the fear is that independent assessments will be to take.
Linda Reynolds: Actually Kurt that’s a really really really good point and it’s something I’ve heard a lot already from a range of people expressed in different ways but that sense of fair is really quite profound and you know some people have said to me, including in Sydney, that’s one of the reasons they think is driving people’s assessments of you know lower functionality ah is fear of losing out, losing out of the package, losing out of funds. In my mind, my job as custodian of this scheme at this point, is to get it to the next stage of endurance so that children, you know, generations of children who are not yet born still have a scheme there that meets their needs.
Voice-over [Kurt Fearnley]: So there we have it. The government is pushing forward with making independent assessments part of the future of our NDIS. In fact, the Minister says independent assessments alone, won’t be enough to make the scheme more sustainable.
Voice-over [Kurt Fearnley]: While our community is largely against the introduction of independent assessment there remains the question, how do we make the scheme fair for all? Bruce Bonyhady again.
Bruce Bonyhady: So instead of looking for simplistic solutions to complex problems which is what robo-planning is and in the process risking the vision of the NDIS it needs to embrace the complexity.
Voice-over [Kurt Fearnley]: And, in May, this point was reiterated to the Australian Parliament’s Joint Standing Committee looking at independent assessments by disability activist Dougie Herd.
Dougie Herd: Nobody is putting me in a box and giving me a score. The Minister needs to rethink it. But I can assure you I am not having, as an individual, some recently graduated speech therapist from a university somewhere come into my life thirty-seven years after I broke my neck and ask me, ask me if I can make a cuppa tea and then give me a score on the basis on my answer, which can be either yes or no when in fact the answer is much more complex than that.
Voice-over [Kurt Fearnley]: The one thing I think that we all want is to see that the NDIS is here for future generations. We fought so hard to get this scheme off the ground and It has made a real difference in hundreds of thousands of people’s lives. So if the government is committed to the introduction of independent assessments, is there a way for people with disabilities to have a genuine say in what they look like? Disability advocate George Taleporos thinks co-design is essential to this process.
George Taleporos: People that want independent assessments can access them. But it also means that the whole assessment process is co-designed with people with disabilities and with people who have expertise in understanding how to appropriately um recognise what people need in their plan. There are all kinds of things that your, that your process needs to take into account and some of that is about how that person wants to live their life and none of that really is being measured in the current assessment process.
Voice-over [Kurt Fearnley]: One of main reasons the NDIS is so successful is that it was co-designed with people who have disabilities. It meant that for the first time we got a system that worked. Really truly worked. Dougie Herd again.
Dougie Herd: And the really really really disappointing thing about all this is, there is a model for co-design that could have been, should have been and must be used to make the National Disability Insurance Scheme work for everybody into the future. There is nothing more personal going on in the National Disability Insurance Scheme than what is happening at the moment and if one has lived one's life for thirty-seven years in a wheelchair and you find that you are being pushed back to the future it is taken personally because it is. Because when the Minister moves on and the Chief Executive moves on; forgive me for putting it in this very clear but straightforward way, I will still need someone to come through my shower room door and conduct a complex bowel management support, because I don’t get away from my quadriplegia. Never have, never will but I still need support through the door and multiply that story 432-thousand times across the scheme.
Voice-over [Kurt Fearnley]: Independent Assessments are stuck in a hurricane. A storm of controversy because we don’t know what they’ll mean for our lives. And as I mentioned to the Minister, I’ve got friends who’ve had their plans cut by up to eighty per cent under the independent assessment pilot. It’s these experiences that have left our community really worried about what their life will look like under an independent assessment.
Dougie Herd is spot on when he says that people with disability won’t be put in a box. We shouldn't be asked to either. I’ve been in those boxes and we cannot go back there again. We’ve fought for too long to get the NDIS we have today. And while the scheme is potentially growing quicker than anyone predicted. Going back to a system similar to what we had in the past, it’s not the answer. So what is the answer? How do we ensure that the NDIS is here for generations to come? Right now, I don't know, but I will keep looking.
A Nation Changed is hosted by me, Kurt Fearnley.
Our Executive Producer is Sarah Shands.
Have you listened to the previous episodes yet? You should - and you can find them wherever you get your podcasts. Just search A Nation Changed.
Or you can find them at Hireup-dot-com-dot-A-U forward slash A Nation Changed.
There are transcripts too at that same address.
