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. 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 organis
