20160808-18037-1ssp5ki.png?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip">Rhonda Galbally and Bruce Bonyhady were both instrumental in the creation of the National Disability Insurance Scheme. Alan Porritt and Julian Smith (AAP)

This is the first program in a new podcast series, Change Agents. It will focus on examples of ordinary people who have brought about profound social, political and cultural change, celebrating their success and explaining how they did it.

The National Disability Insurance Scheme (NDIS) is the biggest social reform in Australia this century. By 2022 it will help half a million people access comprehensive disability support at a cost of around A$25 billion.

On this program, two of the NDIS’ founders explain how they developed something so radical and comprehensive and then won support for the idea. Bruce Bonyhady is the chairman and Rhonda Galbally is a board member of the National Disability Insurance Agency, the body that implements the NDIS.

You can read the transcript below.

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Andrew Dodd: Hello, I’m Andrew Dodd and this is Change Agents, a series about change and the people who make it happen. Today, the birth of the National Disability Insurance Scheme. The National Disability Insurance Scheme is Australia’s biggest social reform this century. By 2022 it’s estimated half a million people will be using it to access better disability support. By then, it’ll cost around $25 billion a year, funded in part by an increase in the Medicare levy.

Today we’ll meet two of its founders: Bruce Bonyhady is the chairman, and Rhonda Galbally is a board member, of the NDIA, the agency that runs the NDIS. They told a forum at Swinburne University that the idea has been around for a long time, as far back as the Whitlam years.

Bruce Bonyhady: Whitlam, following the introduction of Medicare, wanted to have a national compensation scheme. A similar scheme was introduced in New Zealand, but covering just people with disabilities who acquired that disability through an accident – so, it was a narrower scheme than what we have now.

But the idea that you could take the thinking that applies to workers’ compensation or motor vehicle compensation schemes and apply that to disability more generally dates back to then, and in fact is part of a movement that started in the 1890s when the first compulsory workers’ compensation schemes were developed – in fact in Germany.

AD: Am I right in saying it was on the books at the time the Whitlam government was dismissed, and that the Fraser government decided not to carry through with it?

BB: Yes, it was due to be debated in parliament on November 11, 1975, and then Fraser decided not to carry on the reform.

AD: So obviously then there wasn’t the bipartisanship that characterised what happened with the NDIS later.

BB: No, there was no bipartisanship around that, and in fact there was no bipartisanship at that stage around universal health insurance either.

AD: I’ve read that it was scuttled in part because the insurers saw that it was against their interests to support something that would undermine their business models. So, they were opposed to it.

BB: I don’t know that detail. I think the point about the NDIS, though, is that it provides insurance where there was no insurance before. There is no private insurer who will insure someone who was born with a disability, or acquires a disability through a progressive medical condition, and will insure catastrophic risk.

This is a classic case of market failure – there was no insurance available. And it’s a classic issue to which insurance applies – because the whole population is at risk. The consequences of major disability on those directly affected and their families is enormous. And so if we all pay a small amount, then we can insure us all – and it is the most efficient and effective way, as a society, to support people with disabilities.

And in fact, if you go back to the work of Kenneth Arrow in the 1960s, who won a Nobel Prize for his work on insurance, he, in his work, where he demonstrated that universal health insurance is the most efficient way for communities to support the risk of adverse health outcomes, he also had a category for what he called “failure to recover” – in other words, permanent disability. So, already in the 1960s the academic work had been done to demonstrate the veracity of this scheme.

Rhonda Galbally: But, what was missing then was that the disability rights movement hadn’t started in Australia. And there was no mobilisation or interest. In America, it started – really, for the world – with the Vietnam veterans coming back and just not putting up with being put in institutions. They said “no way” and started the independent living movement.

Ours would’ve started just in tiny little seeds towards the end of the 70s. And then in the early 80s they had a small voice, but they were responsible for the deinstitutionalisation movement. But then, by the time it came around for the NDIS, that mobilisation possibility was just as important as the idea – because if the idea had been there, which Bruce designed, without the possibility of the mobilisation then we’d be back to where we were with the Whitlam era. So I think that’s a very important part of the question of: “how come?”

AD: One of the people who deserves a lot of credit in bringing about the NDIS is the former deputy prime minister, Brian Howe. It’s said that back in 2005 he went back to the Woodhouse report – this report that had been commissioned by the Whitlam government – pulled it off the shelf, had a look at it, and started thinking about an insurance scheme that could address some of these issues. How fundamental was he to this?

BB: He was certainly fundamental to my involvement. In 2005 I was just starting to be interested in disability reform. I was very conscious that there was chronic underfunding; that many people were not getting the support they needed – either not enough support or were missing out entirely.

I was on a board with Brian at the time, and I said to him I wanted to talk to him about disability reform. And what he said to me was “you have to stop thinking about disability policy as welfare, and start thinking about it as risk and insurance and investment”. It was one of those lightbulb moments. So, it became a catalyst for me to start to explore how insurance could be applied to people with disability more generally.

I very quickly came across the work of John Walsh, who had developed a whole scheme for anyone who was catastrophically injured – not just those who were catastrophically injured in motor-vehicle or workplace accidents. I said to John “could we do this for all of disability?”, and he said “of course, we just need the data”. Both Brian and then John were incredibly important to how we got to where we are today.

AD: You were, at that stage, chair of Yooralla. And you came into this sector because of a personal family connection to these issues.

BB: Yeah. I’ve got two adult sons, both of whom have cerebral palsy. Prior to them being born – my older son is now in his 30s – I knew nothing about disability, so I became involved on the boards of disability organisations.

Initially my focus was on those organisations and their governance. In 2005 I started to think more broadly. The trigger for that was going to an early intervention centre that Yooralla was running near Dandenong and sitting down with the mother of a disabled boy. She said to me: “Why can’t my son get the early intervention services he needs?”. And I went into this long explanation about how we were doing the best we could with the funding we had, and then I went away appalled by the answer.

Here I was, with all of my connections and education, and I was defending the status quo. That was really the trigger for me to go and see Brian. I thought it was shocking, so that was how it started.

AD: Let’s go forward from 2005 to the election of the Rudd government. The parliamentary secretary for disability services, Bill Shorten, was appointed in 2007. He became very important to what ensued.

RG: Well I think Bill was really the important catalyst in a way. And I think he really was very striking from the very first time I met him in that he didn’t characterise disability as a sad tragedy or misery. He characterised it as an outrage, a real abrogation of human rights, and it was sort of like a non-welfare approach to it, and also a waste: he characterised it as wasteful of people’s potential.

There was a charitable view of disability. People were very happy to talk at length about raising money for poor disadvantaged people, but nobody was talking about it being an absolute outrage. That was Bill, and behind Bill was Jenny Macklin, who was very seasoned, and he had a view of especially mobilisation.

The sector was in complete disarray. And because it had been a charitable sad story, the media was characterised by burden. There were very important programs which probably helped the case but were really fragmenting, because you’d come out of it feeling like cutting your throat as a person with a disability because there you were, you’d ruined everyone’s lives and the families were in tragedy and so people with disabilities organisations didn’t get on at all with carers’ organisations, and both were united – probably quite rightly – in being highly critical of the services that hadn’t changed in about the last 50 years.

AD: I think I read something you wrote that said that these sectors were effectively at war with each other.

RG: They were at war. And they were at war in every country in the world. I can remember reading a Guardian article by the head of the Disability Rights Commission in the UK, and she said we will not make progress in this country until the carers organisations get together with the people with disabilities organisations and build an alliance.

AD: I want to find out more about how you did that and we’ll get to that in a second, but I want to go to the 2020 Summit now, because that also is very important to this. I’ve heard snippets of this story but I want you to tell the full story, Bruce, about how you got this issue on the agenda of the 2020 Summit. I don’t think you were even a delegate, were you?

BB: No, I wasn’t a delegate.

RG: There’s a club for them, for non-delegates.

AD: Are you in that club?

BB: I got together with Helen Sykes, who is the chairman of the James Macready Bryan Foundation, and one of my closest long-time friends, John Nairn, who was a director of that foundation. None of us were invited to the 2020 Summit so we got the list of delegates and we wrote to everyone and contacted everyone on that list that we knew.

We knew that no-one was going to take our idea to the summit as their top idea, so we knew we were going to be at best their second idea at the summit. So we figured that going into the Summit we were somewhere worse than position 1001, but somehow it emerged as one of the half-dozen big ideas of the summit. And – on reflection – it was undoubtedly the big idea of the 2020 Summit.

AD: How many of them put it as their second idea, do you know?

BB: I don’t know. Certainly a number of people I know well pushed it.

AD: How did you get people to say “OK, I will put your idea down as my second idea” at this big summit?

BB: I think it was a compelling case. Everyone knows someone with a disability, or they’ve got a relative with a disability, and they know how broken that old system was. Here was an idea which made reform affordable, and people responded. And I think we had some luck.

I think some of these things are: you work hard and you put all your effort in and you get some lucky breaks, so we obviously got some lucky breaks for that to happen.

AD: So it emerges as a big idea and – as you say – probably the big idea of the 2020 Summit. And then you were asked by Bill Shorten to look at the feasibility of the scheme and actually shore it all up with the right numbers behind it.

BB: Well we’d already started on that process. So a group of us, chaired by Ian Silk, worked for 18 months on this report. When you’re asked to recommend reform to governments you’ve got a choice – you can have a long shopping list of ideas, or you can essentially say “we’ve got one idea”, and that’s what we did.

We said: “We’ve got one idea and we think it’s a big idea and we think it requires further examination by government”.

AD: And I think this is about the time that Bill Shorten says to you and to the various groups: “come together and start working as a team”, and you led this group that became the alliance.

RG: There was internal-to-government and then there was external-to-government, and I facilitated the external-to-government coming together of the three and in fact it was very moving.

I think about it now in terms of the maturity of being able to think about what it was like from somebody else’s point of view. I can remember the first time we came together with carers and I was thinking about it from my mother’s point of view – how it had been for her and her life when I was disabled as a tiny baby. It was that expression and then them seeing it from the person’s point of view, instead of just from the family’s point of view, that made it quite a profound connection.

Internally to government, because the carers’ networks had been so powerful through the 1990s, there was a view that there should be a separate carers’ council. But because we’d mobilised and come together on the outside, it just didn’t make sense. So that was a persuasion job with Bill and Jenny, because the bureaucrats were pretty convinced that they should be separate.

I remember [the bureaucrats] saying “but carers look after old people” and I thought “well you’re not a carer of someone old until they’re disabled, actually, otherwise you’re just a son or a daughter – you don’t play that carer role until they’re disabled too”, so the topic is still disability.

So they then agreed to it being set up in joint services and carers, and then Bill insisted on putting business and unions on. I was very opposed and I said “Oh no, it should just be consumers” and he was proven to be right; they were tremendously valuable – they opened it out, they took it back to their networks, to the business council, to the AICD, to all sorts of places that had never heard of these issues, and the ACTU. It was really valuable, that move to broaden that group out.

BB: I think the other thing that we need to give Rhonda credit for is the alliance was her brainchild. This alliance outside government – it’s a world-first. This is the first time anywhere in the world that, the sector having split, as part of the disability rights movement, as a sign of its maturity came together to prosecute the case for big reform. You only get big reform when you’ve got unity and a single voice and a single point of advocacy to government and the community.

AD: You were saying earlier that some were pushing to include education in the campaign and other aspects of disability reform that were required, and it was about narrowing it down to one achievable – admittedly ambitious – but one achievable goal.

RG: Yes, and the trouble also was a matter of us – Bruce and I – thinking that the NDIS should be the focus, but also we decided to only work on something we could agree on. Education is still reasonably controversial in that some of the carers felt special education was good, and the people with disabilities organisations didn’t agree with that, so we put it off the agenda instead of having another war about content. On the NDIS, everyone agreed.

BB: The NDIS was and is a unifying idea because it says the support you will receive is based on your need. It’s no longer based on where you acquired your disability, when you acquired your disability, how you acquired your disability, or what your type of disability is: whether you’ve got autism or cerebral palsy or spina bifida.

It says need is the determinant, and that the support you receive is commensurate with that need. So, we were able to work through that – because even within that there was still a lot of debate in terms of language and other issues that we had to get right before we could agree that this was the single issue that we were going to pursue above all others.

AD: Can I ask you about the mobilisation, because at one stage – in fact you still have these kind of numbers – 150,000 people reachable by email who then have the flow-on effect of contacting others. The alliance didn’t have a lot of money but it had this incredibly powerful tool at its disposal: the people involved.

RG: They were very hot, and still are very, very hot contacts …

AD: What do you mean by hot?

RG: I mean they’ll take action. I mean they’re not just a contact list where half of them are old and you haven’t cleaned it. I mean this is a hot where people have kept up-to-date, where they’re vitally interested.

AD: How have you harnessed this resource?

RG: It was absolutely instrumental in getting the scheme. Wouldn’t you agree Bruce?

BB: Yeah.

RG: Very, very important. And it’s watching – it’s a marvellous check and balance, and it’s watching and anything that would not make the scheme happen in the way that everybody thinks that we’ve signed up for, it’s there, and it’s never before been in my experience, in my life, that I‘ve ever seen disability be a really political issue, a hot political issue.

It was in America, but that was the Vietnam veterans that did that and they made the American Disability Act that’s a really powerful act. But in Australia it’s never been but now it is, and I think it’s not going to go away – I think it’s just there, and it’s a really important instrument for all of us.

AD: Is it true that 120 House of Representatives MPs were visited by people with disabilities and carers in the lead-up to key decisions being made?

BB: I don’t know whether it was 120 but it was certainly of that order. People went to see their MPs, they wrote to them just prior to major COAG meetings; thousands of emails were sent to the prime minister and the premiers …

RG: Disability teas, do you remember those?

BB: Yes. This was a very active group. It’s worth remembering that at about the time the NDIS campaign – the Every Australian Counts campaign – was running, the miners were also running a campaign against a mining tax. They had millions and millions of dollars. What the NDIS campaign had were people. This was an old-fashioned – in many ways an old-fashioned grassroots campaign – mobilised through social media very, very effectively.

RG: I was chairing a hospital at the time and hadn’t mentioned it to my hospital – to the board or the staff – that they might have had any interest – I should’ve – but they came to me and said they were having a disability tea. And so they were everywhere, they were in hospitals, in local governments, in NGOs, in businesses – a lot of businesses had disability teas.

There were state co-ordinators that were part of the Every Australian Counts campaign – they did a lot of that work. There was Kirstin, there was John, and then there were the Australian Federation of Disability Organisations, and Carers Australia – a very powerful and important organisation. They’d get it out to their members and they’d all have disability teas so it wasn’t just that 150,000 very warm email contacts of citizens of Australia. They weren’t organisational, it was also all the organisations.

BB: And then there were all the people who just told their stories, without any sense of self-pity. They just explained what life was like as a person with a disability, or someone caring for a disability – frankly and openly – and those stories resonated with the Australian public, and the statistics also supported those stories.

When we found that in the OECD area, Australia ranked last in terms of people with disability living at or below the poverty line, people said: “In the midst of this great mining boom, we’ve got this?”.

So, the sense of, not just shame, but that it can’t be allowed to continue, just spread out from people with disabilities to the community as a whole and culminated in that moment when the government put forward the proposition that the Medicare levy should be increased to fund the NDIS, and 85% of the Australian population said: “we’re happy”. Never before has a tax increase been approved overnight.

AD: You referred to John Walsh before, and I don’t want to skip over that because this guy deserves enormous credit. This is somebody who worked at Pricewaterhousecoopers; he was an actuary. He had an accident at the age of 20 when he was playing rugby and became a quadriplegic, and focused as a result on this special skill he had as a number-cruncher and you guys used him throughout the process to shore up the numbers to convince the politicians and the departments that this thing was achievable.

BB: This scheme would not have been achieved without John.

RG: I agree.

BB: His analytical capability, his enormous intellect to apply the actuarial principles to disability as a whole, to get the data, to do the analysis. He was a member of the disability investment group, he was then the other commissioner with Patricia Scott on the Productivity Commission, he’s now on the board of the NDIA and chairs our sustainability committee.

His contribution is giant. He worked not just in Australia but in New Zealand so he understood the accident compensation scheme there, he’d worked on most of Australia’s workers compensation and transport accident schemes. His significance is enormous.

AD: He came with you both, I understand, to dinner at The Lodge, with Jenny Macklin and Bill Shorten. Have I got that right? How did that dinner go and what happened?

BB: We were at a point where this scheme needed true bipartisanship at the tops of all parties …

AD: I should say when this happened Julia Gillard was the prime minister …

BB: She was the prime minister. The Productivity Commission report had been presented and a number of us got the opportunity to have dinner with her and put the case for why the NDIS should be a priority for her government. Because, at the end of the day, big reforms need prime ministerial approval.

AD: Did she need much convincing?

BB: I don’t think so. I think she got it. But I think it was very important in the sense of hearing from people who had been deeply involved with the development of the idea.

The dinner was not conclusive; we didn’t know what the outcome was. We really put our case. It was actually quite short; the business part of it probably only took about 45 minutes for the key points to be made, and then it went to more general chit-chat. But all of the key points were made.

We then waited. Soon thereafter she said: “we’re going to get this thing done”.

RG: It was a very quick response after the commissioner’s report. It was about the quickest ever.

BB: Yeah, but it was that moment where she said “we’re going to get it done”. And from that point on, the machinery of the Commonwealth government swung fully into action behind the scheme.

AD: What does that look like, when it all swings behind you and everyone’s onside and wanting to make it happen quickly?

BB: It gets momentum.

AD: That word momentum keeps cropping up from this point on …

BB: Well I think when you have the prime minister’s department, the Treasury, the Finance Department, the Department of Family and Housing and Community Services, all behind an idea, and they’re the key departments, then it happens.

AD: The Medicare levy increased from 1.5 to 2%. How did you manage that?

BB: Craig Wallace was very significant in that. He’s the chairman of People With Disability Australia, and so he has always been very influential in disability circles and he wrote an opinion piece on it, and I think that was at a time when the government was thinking through how were they going to fund it. So I think that was certainly influential.

I think it’s important to remember that what the Productivity Commission said was that this scheme should be funded out of general revenue, and part of the reason they argued that was because they said this is one of the first things that government should do, it’s like defence.

If taxes aren’t going to go up then there are other things at the margin that government should cease doing in order to ensure that this scheme is funded. Their view was this was core government business.

RG: I’m just trying to think, though, who did come up with the Medicare levy? I think it is a really interesting question. It might have come out of Jenny Macklin’s office …

AD: Well, I remember reading that Jenny Macklin at one stage went to the Expenditure Review Committee [ERC] and, I don’t know how she got away with this, but just coolly asked for A$14 billion over five years to make this happen. She said afterwards it was the biggest thing she ever asked for from the ERC – as you’d kind of hope that that would be the biggest thing she ever asked for – but this is a massive amount of money.

RG: But she had a very good case. You make it sound quite casual, whereas she’s a very carefully prepared. She’s a top policy person herself, so she would have had all the i’s dotted and the t’s crossed.

AD: So it gathers this momentum, and I remember the announcement that it would be tied to Medicare and there was a little bit of opposition, there was some discussion about it. But what characterised it was how little opposition there was and how quickly the actual opposition, then the Coalition, fell in behind it.

BB: I think it’s not fair to say “at that point the opposition fell in behind it”. I think that the opposition, particularly Tony Abbott and senator Mitch Fifield, understood this scheme and its significance from very, very early on, so the bipartisanship began much earlier.

And I think what they grasped was that it was not just a social policy reform, but it was an economic reform, and it was about equity, and about opportunity. And this is about equality of opportunity for people with disabilities, and it was about equity for them and their families.

And so there was a basis for that emerging bipartisanship. And one of the things that we knew already at the time of the disability investment group was that this reform was probably going to take seven years in terms of introducing it, that it was going to be a long period of time, therefore it was going to go across multiple governments and so had to win the support of all parties and all governments, both federal and state.

AD: Rhonda, when did you know that you’d won the support of Tony Abbott?

RD: There was a systematic program of approaching and talking, and I met with Mitch Fifield quite often and he had supported it – he’d been very clear. But I bumped into Tony Abbott in the street in Sydney, and I said to him: “Mr Abbott, I’m hearing you’re supporting the NDIS and I’m so pleased”. And he said: “Well normally I’m Mr No, but on this occasion I’m Mr Yes”.

And so I had a Press Club appearance about two weeks later and I quoted it. He then picked it up and quoted it everywhere. So it became his phrase!

I’ve met millions of politicians over a long, long life – because I’m quite elderly by now – and a lot you don’t get past the goalposts because there isn’t that groundswell. Medicare had a groundswell, which was pretty good for its day when you think about it; this was about 50 times bigger than the Medicare groundswell. And I don’t think a politician in Australia could deny it.

AD: Rhonda Galbally, a board member of the National Disability Insurance Agency, and before her, Bruce Bonyhady, the chairman of that same organisation. Change Agents is a collaboration between The Conversation and the Swinburne Leadership Institute, and Swinburne University’s Department of Media and Communication. You can subscribe to this podcast on iTunes, or listen on Soundcloud. Production today: Heather Jarvis, Sam Wilson and Jonathan Lang. I’m Andrew Dodd, and I hope you can join me next time for Change Agents.

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Change Agents is a collaboration between The Conversation and the Swinburne Business School and Swinburne University’s Department of Media and Communication. It is presented by Andrew Dodd and produced by Samuel Wilson and Andrew Dodd, with production by Heather Jarvis.

The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.