Critical forum on disability

On Tuesday April 12 the La Trobe University Ideas & Society Program, convened by Professor Robert Manne, held an important forum on the question of disability insurance, the new challenge confronting Australia’s welfare state.

Transcript

Robert Manne:

My name’s Robert Manne and I’m the convenor of something that we call the Ideas and Society Program at La Trobe. The idea of this is to have staff and students, but also members of the general community to come for serious discussions of ideas and to participate in questions. I’m really delighted to see the audience here today. This session is an experiment for us. In general we’ve had topics that are very broad. This is the first time we’ve tried a discussion of a fundamental issue, but one with a particular set of interests and I’m absolutely delighted and I thank you all for coming, because it’s convinced me that discussions of serious policy issues and matters that will make this possibly a better society can be conducted in our forum. I’m not going to introduce the speakers that will be done in a minute by Christine Bigby. I just want to thank the four speakers very much for coming today. I’m an interested part of the audience, really, and have come here to learn. It’s not an area I have a great familiarity with. It is however an issue that I think is of fundamental seriousness and I hope La Trobe University through this forum can play a small part in helping the cause of a humane system of welfare and a humane system in general for the disabled sections of society.

So with that, I’ll introduce Christine Bigby, who’s the Chair in Social Work at this university with responsibility I believe for post-graduate studies. Christine will be chairing the session today and introducing the speakers. So, with that, I thank you from the bottom of my heart for having come and I hope this is a fruitful occasion.

[applause]

Christine Bigby:

Thank you all again very much for coming today and I think we’ve got a very wide and varied audience. I know there’s academics here, there’s students here, there’s family members of people with disabilities, there’s people with disabilities themselves and there’s a whole range of people from various service organisations that provide services for people with disabilities.

The aim of today is to discuss the Productivity Commission report on support and care for people with a disability and its proposal to establish a National Disability Insurance Scheme for people with disabilities, which would be a very significant landmark in the reform of a welfare state in Australia. It would probably be, if it gets enacted, the most important reform since Medibank was introduced in 1975. But from the perspective of an academic, and a student of the welfare state, this report probably has the same standing as the 1942 Beveridge Report in the UK on social insurance and allied services which laid the foundations for the British welfare state by addressing the five giants that were identified at that time of want, disease, ignorance, squalor and idleness. In that report, disability was framed very much in welfare terms, so there was a compensation scheme for people who were injured and there was income support for people who were unable to work. So the main form of welfare was income support. And since that time, both in the UK and in Australia, there’s been a very strong welfare flavour to policy for people with disabilities. People had to the right to income support if they can’t work, but they’ve had no rights for support services to enable them to participate in the community. Budgets for services to enable participation have never matched needs, and that’s resulted in rationing and waiting lists, and in Australia, very high levels of unmet need, which has both obstructed people’s participation in the community, but also interfered with the quality of service provision that has been available.

Central to the National Disability Insurance Scheme that’s being proposed by the Productivity Commission is not welfare and compensation, but a right to provide support for people with disabilities to be included and to participate in society. The scheme aims to fund the reasonable assessed needs of people with a disability to establish a properly financed and cohesive scheme and to provide high quality care and support. It aims to give people with disabilities choice and control over their own lives and over the services that they receive. But also alongside the support for an estimated 360,000 people with disabilities, the scheme would also champion changing community attitudes and the removal of obstacles that interfere with the social participation of people with disabilities.

This scheme and the report and the proposals in it are remarkable not only for the sense of an entitlement that they would give to people with disabilities to support services. It would remove the mismatch between policy intent and allocated resources. So there would no longer be capped budgets, services would no longer be rationed and people would no longer be at need to get into a queue for them. Support would be a right, just as health care is at the moment.

It’s remarkable too for its bipartisan political support and for the community support that’s out there in the community. And as the editorial in The Australian said a number of weeks ago, the advantages of this scheme are so self-evident, why are we having the debate about it? Today I think is a chance to hear the rationale of why we need this scheme, what the scheme might look like, but also to have some debate about it, and to begin to critique some of the detail beneath the over-arching scheme and try and move some of those ideas forward so that when the scheme is finally enacted, over the next few years, it is the best possible scheme that we can have.

So I want to introduce the first speaker today. Each speaker is going to talk for about ten minutes, ten to fifteen minutes, and then each will speak and then we’ll have some questions and debate.

The first speaker is Bruce Bonyhady who I think is one of the chief initiators of the NDIS. He took this big idea to the 20-20 summit, and then became part of the Disability Investment Group that was established by Bill Shorten, the then Parliamentary Secretary for Disability, which has laid the groundwork for the Productivity Commission’s report. He’s also Chair of Yooralla and Chair of Philanthropy Australia and in June 2010 was appointed as a Member of the Order of Australia, for his services to people with disabilities, their families, and carers. And in between doing all that he earns a living as a very successful businessman. So Bruce, over to you. [applause]

Bruce Bonyhady:

Chris, thank you very much for that warm introduction, and Robert also. I’m delighted to be here and to have the opportunity to talk to you about this idea for a National Disability Insurance Scheme. I’d really like to talk about, concentrate my remarks on three particular areas. I would first of all like to talk about why this is in a sense a big idea. I’d then like to give you an overview of the Productivity Commission report because I expect that some of you will not be as familiar with that report as others. And then I’d just like to make some remarks about the report and what I think are some of the most significant elements in their recommendations.

Essentially, as Chris has indicated, disability has been framed as a welfare and a charity issue in our society from its very beginnings. If you trace the history of our society back into the United Kingdom, you can find that the first reference to disability as an object, and it really is an object of charity, comes in 1601, when the statute of charity was developed under Queen Elizabeth. And essentially, disability has been seen as a charity and a welfare issue for now some five hundred years. But what has changed has been the life expectancy of people with disabilities, the capacity of the community to provide in formal care, and the capacity as a result of a charity system and a welfare system to cope with such extraordinary demographic and social change. And as a result, what we find today is that the system that we have… and here I’m going to use the words of the Productivity Commission… is inequitable, underfunded, fragmented and inefficient. And what’s interesting I think is that for over one hundred years, in fact since the late nineteenth century in Germany, there has been a different approach taken to disability and that is the disability that arises through workplace accidents, and then, following that, accidents involving motor vehicles. And that is to think about disability as something that can be estimated and funded on the basis of that estimated need. And so shifting the funding and the structuring of disability services from that welfare approach to an insurance approach and an insurance approach with a long term focus based on participation of people in our society, in all aspects of our society, community and work and more general participation.

And so in a sense what this idea for a National Disability Insurance Scheme does, is it says, can we take those ideas that have applied for over a hundred years to injuries in the workplace and apply them to disability more generally? Can we estimate the incidence of disability and plan for the funding that’s needed and the support structures that are needed? And that’s in essence what the Productivity Commission has recommended. So what it’s done is to say, we know as a society, what the incidence is of different types of disabilities, so we know that for every one thousand children that are born, two and a half will develop cerebral palsy or will be born with cerebral palsy. We similarly know the incidence of spina bifida, autism, and we know the incidence of progressive medical conditions like motor neurone disease and multiple sclerosis.

So let’s estimate as a society what those incidences are, what the severity of the disabilities are likely to be, what the life expectancy of people with those disabilities is likely to be, and then let’s say what is reasonable and fair for families to be responsible for, and what should be the community responsibility. So while we cannot estimate each individual’s risk of acquiring a disability or having a child or a grandchild with a disability, we can do that very accurately as a society. And so let’s take those actuarial principles and apply them to disability more generally in just the same way we’ve been applying them to workplace accidents and motor vehicle accidents.

So that’s the big idea, if you like. What the Productivity Commission has done is that it has endorsed this idea and I think it’s important to recognise that they had extraordinarily broad terms of reference to examine all sorts of different approaches to disability, funding and structure of services, and within that complete range which includes an examination of systems that are used internationally. They have come down in favour of an insurance approach.

What they’ve actually recommended is two schemes. A scheme which would cover the vast majority of people with disabilities, which they’ve termed a National Disability Insurance Scheme, so it would cover people born with a disability, it would cover people who acquire a disability through a progressive medical condition, it would cover people who are injured, except for people who are catastrophically injured, who would be covered by a smaller scheme which they’re calling the National Injury Insurance Scheme. There are some technical reasons why they have recommended these two schemes which I can talk about later, if you’re interested. But essentially what they’re saying is, we should take an insurance approach to disability throughout our society. There would be in their estimation, about 360.000 people covered by these schemes. So these are people with significant disabilities. They may reflect a significant limitation in self-care, mobility or communication. It would include people with intellectual disability, people who would benefit from early intervention and there are two essential groups who would benefit children who are newly born and newly diagnosed with disabilities, but also people who are acquiring a disability later in life, through a progressive medical condition. Many of the effects of those disabilities can be delayed and their participation in community and work can be continued and extended through early intervention services and finally a group of people who would benefit significantly from the scheme. So one of the things that the Productivity Commission has recognised is, you cannot always diagnose the condition that leads to disability, so that final group is designed to embrace those individuals who would benefit from the scheme.

According to the Productivity Commission, about a hundred people each day in Australia are diagnosed with a significant disability that would then make them eligible for support under the scheme. So far from this being a minor scheme, a minor change, we’re talking about one hundred people a day, who today have no entitlement to services and almost all of whom will be dependent on family and friends for their primary source of support.

Those eligible would be eligible for care and support for those daily needs in terms of self-care, in terms of mobility and communication, they would be eligible for therapy services, physiotherapy, occupational therapy, speech therapy, importantly early intervention, because it’s investment and in the long term leads to reduced costs and also they’d be assisted in terms of access to community, education and work. And the level of benefits that’s stipulated is what the Productivity Commission has described as “reasonable and necessary”. So this is not some construct that individuals might come up with of a wish list this is reasonable and necessary support, taking account of the support that families would provide and then saying, look, over and above that, it’s unreasonable for families or individuals to provide this themselves, and we as a community need to provide it.

Importantly, too, and Chris mentioned this, the services will be individualised and people shall be given choice. So, instead of the current system, which relies on block funding of service providers, the money would go to individuals and their families and they would be able to go shopping. They would be able to participate in a marketplace which is likely to be characterised by much greater innovation, much greater choice than we have today. The funding for the scheme as proposed by the Productivity Commission would come from general revenue, and by that I mean, it would come from our existing taxes that we all pay. The approximate cost, according to the PC, is $281 per person. It’s not a lot of money for the peace of mind that would come from this scheme. And an important point they make is that insurance schemes are of benefit, not only to those who claim on it, but also to those who know it is there as a source of support, if it’s needed.

So this is a social insurance model, where the premiums we would all pay would be based on a community rating principle related to or driven, or reflecting the levels of disability across our society.

In terms of the significance of the report itself, there are three things that I’d just like to mention. The first is that the Productivity Commission has said that if there is one thing that should rank significantly higher amongst government expenditures today, it’s disability. Today, disability expenditure is often the runt of the litter it’s the thing that governments put money towards when they’ve paid for all the other things that they need, or they think they need to pay for. There are, and have been, exceptions to that but by and large, that has been the practice. One notable example is the shift of the establishment of Stronger Together in New South Wales that John was responsible for, where he argued successfully within government that disability expenditure should be re-prioritised. But when I look across the history of disability expenditure in Australia, that is a very rare shining light.

So what they’re saying is that disability expenditure should be amongst the highest priorities of government, the amount that needs to be set aside should be actuarially estimated and then put with the National Disability Insurance Agency for that money to be allocated to individuals to provide, as they say, reasonable and necessary benefits.

So the first point to make about the PC report is that they are recommending a complete re-positioning of disability amongst government expenditure from one of the lowest priorities to one of the highest priorities. In essence, a priority that should be seen along with things like defence.

The second important aspect is this notion of insurance or the structure of the scheme as insurance. And I think that there are four issues that are central to that reframing and make a compelling case for it. The first is that insurance schemes, unlike welfare schemes, seek to minimise costs over a person’s lifetime, whereas the welfare approach is just focused on short term cost minimisation. What that leads to, that long term focus leads to, is an alignment of interest, a fundamental alignment of interest between people with disabilities, their families and the funders and managers of the scheme, because they’re all focused on that long term outcome of minimum cost and maximum participation. The second reason is that insurance schemes estimate and rely on forecasts. And so they’re forever comparing experience against forecast and with that comes increased efficiency. Great efficiency over time. The third reason is that insurers can play an enormously positive role in terms of social change and we only have to look at the Transport Accident Commission in Victoria to see how that can occur. And the fourth reason is that insurance schemes embed research and best practice into the very core of their structure and so over time lead to improved outcomes.

The final point I just want to make is that there’s been, since the Productivity Commission report was announced, some focus on the cost of $6.3 billion. It’s important to make clear that this is an additional gross cost. It’s not a net cost, it’s a gross cost. Improved outcomes will lead to a lower net cost. And the final point is that the $6.3 billion needs to be compared with what is happening today, which is that as the informal care system collapses under the strain, government expenditures in this area are rising at 8% per annum. Which is just not sustainable. So we don’t just need more money, we need a much more efficient system and that’s what the NDIS embraces. Thank you very much. [applause]

Christine Bigby:

Our second speaker this afternoon is Rhonda Galbally, who also has an Order of Australia, which was awarded in 1991. And I think probably the best way of describing her is as a long term disability activist and agent of social change. She’s been the CEO of some key organisations during her career that have made some key differences in Victoria and nationally. She was CEO of VCOSS, the Victorian Health Foundation, Our Community and the Myer Foundation and she was also the founding managing director of what is now the Nossal Institute at the University of Melbourne. She holds honorary doctorate degrees from the University of Melbourne and at La Trobe University. She’s the previous Chair of the Disability Advisory Council of Victoria and the current Chair of the National People with Disabilities and Carers’ Council that was responsible for the Shut Out Report which was another significant pusher along the way for the Productivity Commission reference. She’s a member now of the independent advisory panel for the Productivity Commission enquiry and so has been very involved in advising around that. So, over to you Rhonda.

Rhonda Galbally:

Look, I’m going to outline a couple of challenges that I think we’ve got, around this idea for a National Disability Insurance Scheme. The first challenge I think is the way in which the $6.3 billion has been greeted inside what I would call the family, and the family are really the people with disabilities and their movers, their organisations, service delivery organisation and carer organisations. And it’s interesting that in going around talking about the National Disability Insurance Scheme, the numbers of people who will speak out and say “Yeah, but how can we afford it? How can we afford $6.3 billion. That’s a lot of money.” And as Bruce has said, if you look at it compared with other expenditures, that are just undertaken in commitments all the time, if you look at it compared with the total expenditure by the Australian government of well over $300 billion a year, if you look at it from the point of view of your average corporate going into negotiate with government over funding for something where it’s really “Why aren’t we spending this? When will we?” I think it actually points to an inner, the inner family view of disability as being very low down. The unhappiness with what’s delivered is absolutely palpable and has come out right through the enquiry and into a Productivity Commission report but the apology for it being around this sort of money I think is one of the challenges we face. That somehow we have to get our act together inside the family, to say, yes, $6.3 billion, and when is it coming? Not, gee, it’s a lot of money for the Treasurer to find. We have to sort of get the mindset that the average telco in Australia would have every day of the week. And I think that comes from a history that I won’t go into, you know, of being oppressed. I think it’s the reaction of an oppressed sector. But it can’t happen now. Here, we’ve got to this stage where for the first time in Australia, the Productivity Commission, a quite conservative body, not known for its left wing approaches, has come out with a report that says, it’s shameful. Things have got to change. Have come out with a strong and reasonably sensible, I know there’ll be critiques of their approach and that’s another challenge that I’ll come to in a minute. But come out with a series of quite sensible, serious recommendations and we have to, inside, say, “and it’s about time now”. So that’s a challenge.

That relates to the second challenge which is the disarray amongst the family that for various reasons that I completely understand, that are extremely painfully, really, there has been tremendous splits between carers and their organisations, between people with disabilities and their organisations, between service providers who’ve been the common enemy, I must say, for carers and people with disabilities, so that’s been one point of unity. And these splits have really fuelled a lot of fire and brimstone, and actually, back in the late 70s and early 80s, probably fuelled the move to independent living and integration so it probably did have a purpose. But now that doesn’t have a purpose any longer, because splits in the family are a challenge in that that’s a divide and conquer type of arrangement which means we won’t get up if ever there’s a need for unity, it’s now. And in that respect it’s really great to see the National Disability and Carer Alliance that’s been built still a very fragile alliance, politically extremely important, incredibly important to Australia that that alliance is maintained because that brings together carers, people with disabilities and service providers for the first time in this country, and we really wouldn’t be where we are now if we hadn’t had that alliance. But we need that to be also out in the community. Time for the divisions to be put aside to get this big idea up.

The third challenge relates to the big idea. Because you go through it and I noticed in the media that greeted it, there was some shock and a bit of surprise that there are two schemes instead of one, that there are issues of the architecture of it, that one could improve and that hopefully those submissions will get into the Productivity Commission in time for it to come out with its final report and take account of it. But basically our big challenge is, and this is a challenge I don’t know if I know the answer to, I’ve never known the answer to this one. Are we better off trying to get what we can up now, or should we allow the critique to inform the campaign so that we’re not united in getting up something now. It might not be exactly what we all want but at least it will be something. And I’ve always been… I’ve erred often on the side of “let’s get the scheme right” and really go for a really excellent scheme, let’s not compromise. But now that I’m in my sixties and we still haven’t got anywhere in this field. We’re still shamefully behind every other country in the Western world. I now wonder whether the challenge isn’t for us to do the critique we can to get where we can before the Productivity Commission report comes out and then once it comes out in July, to get behind it, whatever’s in it, and to really campaign hard for it. Because I don’t think that would be the time to offer the critique after that time.

The fourth and final challenge of course is really big “P” political. We’ve got a hung parliament. The Greens and Independents are incredibly important. The Labor government we wouldn’t be where we are without Jenny Macklin and Bill Shorten. You know, they’ve been vital to where we are now. That government, the hung parliament, has to want to carry this forward, has to come out at the middle of November when the government must release the Productivity Commission report with a way forward, not just “here’s the report” but a way forward, a commitment. They won’t have to put any money into it in this electoral cycle. It will be the next electoral cycle that will require the money, but if we don’t get a commitment to a way forward, then we’re in trouble. We want the Opposition to support it but not own it, because if it isn’t a government initiative it won’t get up. So we want them to be bi-partisan. And that all has to be not with the family the family of carers, people with disabilities and service providers have to be united but the big question is how do we bring this to every Australian? You know, even this room, as great as it is to have all these people here today, I still think that if the topic had been about immigration or refugees, I don’t know if I’m right about this, they might not be here either, maybe Robert would say this is a time in our history when nobody’s active about anything. But this requires activism for every Australian. That’s what we had to do to get Medicare up. Medicare was a highly populist campaign that was run where every Australian actually came on board and wanted it. They wanted universal health care. And I think we’re a long way from having the world outside the family actually tackle this. And it would be great to see and this is me as a 70s hippie of course but wouldn’t it be great to see a march down Federation Square and Bourke Street and Swanston Street with hundreds of thousands of people demanding the National Disability Insurance Scheme. I mean, that’s what we want really. At the very least, come to the congress about this topic won’t you, on May the second and third, because that’s a rally of a kind. That’s where politicians are going to see the numbers of people behind this scheme. We wanted a thousand, it looks like we’ll have five hundred. It’s an extremely hard slog to get this topic up for every Australian. And I think that’s the biggest challenge of all. Because frankly, even with Macklin, even with Shorten, even with others in the Cabinet, and even with the Greens and the Independents, we have to let the government know that they can’t not do this. If we don’t get the response we need in November, I think it is a serious setback, really, for this campaign. And I think it’s a highly political discussion that we need to have that we’ve never had in this space before. We’ve been too busy really pulling each other apart and we need to now unite in a highly political discussion.

This should be a number one political topic in Australia.

[applause]

Christine Bigby:

I think that’s really interesting. We almost got an opinion piece in The Age today but it got misplaced by what was happening with the army, so it’s hard slog getting high profile for disability issues.

Our third speaker is John Della Bosca who probably needs less introduction than anybody else who has held senior ministerial positions in the New South Wales Labor government from 1999 to 2009. During that time amongst other things he was Minister for Health and Minister for Disability Services. And I think was the instigator of the no fault insurance scheme in New South Wales, and certainly for the redevelopment of the large (??) institutional services in New South Wales and significant injections of funds into the disability service system there. He resigned in 2010 and became, somewhat controversially, the Campaign Director for the National Disability and Carer Alliance and is aiming now to assist in the establishment of the National Disability Insurance Scheme. And he’s now heading up the campaign Every Australian Counts. So over to you, John.

John Della Bosca:

Well, thank you very much everybody and I think the starting point for this discussion from my perspective is that a campaign is about solving a problem. And what is a problem? So I’ve been kindly introduced as having a previous life. And my predecessors in a previous life, very directly in a sense, returned from a conference, that’s a conference in 1946, it was the post-war ALP Conference. They lost by one vote a motion to make sure that the Commonwealth Government honoured its promise, the Curtin and Chifley governments honoured their promise to return the taxation powers to the states after the war. In losing that vote, that led to a series of changes that we now know as the new federation and started something that we call vertical fiscal imbalance. It probably started a long time before that, but it certainly accelerated it. So essentially, the first of our problems is the people who are responsible for disability support don’t have the money, don’t have the capacity, to fund it. That’s the first problem. It’s a simple fact that the largest of our states has a budget of a little under… I can’t remember what the last New South Wales budget was but round about 40 billion, which is a little over 10% of the Commonwealth budget. It starts giving you a sense of the level of difference and so you have that heritage now for a long time three generations, where the states are the providers of services but they have scarce funds in order to deliver on them.

That’s straight out of the culture on disability in particular I think and it’s very important for us to focus on disability as distinct from the other areas of social policy and the way in which they have been regarded in Australia in that same time period, that disability, as Bruce has alluded to, has one of the features of absolute best practice in early intervention, but any system that involves rationing, by its nature, is the opposite of best practice, which I suppose is worst practice, I’ve never heard it expressed that way. So we have a system in Australia and have had it for a very long time now, apart from the debate over institutionalisation and de-institutionalisation, we are, apart from other debates in disability, just in terms of the resources available to do the job, we have two things. First, the people responsible don’t have the money. Secondly, their response to not having the money is to simply ration the system. Which leads to the other key finding of the Productivity Commission report which is again alluded to by both Rhonda and Bruce, which is when you talk about the size of the Productivity Commission’s findings and the approach the Productivity Commission took, because they took it because they think that’s how the system needs to be funded, what you find is a simple proposition that at a national level, disability funding is around about half what it needs to be. Now, if you think about that and applied that to universities, applied it to high school education or primary school education, applied it to the health care system, there would be absolute outrage if the funding allocated was half of what the real need was. And yet we know from the numbers, that’s exactly what we’ve been doing in disability for at least a couple of generations, and probably really forever.

So there’s the fundamental political problems. The fundamental political problem is that the people that… the organisations, the state governments that are responsible for disability can no longer do it, haven’t been able to do it for a long time, so it has to become a national responsibility, and secondly, an artefact of that reality is that it’s been massively underfunded, rationed and led to absolute worst practice in service delivery, or near enough to worst practice in service delivery.

So what’s the other thing that’s been going on, and I think it relates to Rhonda’s point, and she talked about every Australian, and this is probably getting into a controversial view of speculating about the ideology that’s allowed this to happen. We like to think of ourselves, we characterise ourselves… when I say “ourselves” I’m talking about the national “we”… Australians tend to characterise themselves concerned with fairness and equity, and we’ve all heard those things from politicians of all ideological and political persuasions and in fact all of us tend to say it from time to time when we feel particularly misty about the national character, whatever we perceive the national character to be. And yet, again, applying that idea, if you think about health, you think about education, you think about universities, you think of any of the things that are measured by the OECD as a national standard, Australia does pretty well. In a lot of these policy areas I dare say Australia is one of the leaders. Usually in the top… certainly in the top five or six, and often in the top three or four, in all sorts of areas of social policy. But in disability we are consistently a very poor performer. We are consistently in the bottom 25% and in some areas, below that. So that tells you there’s something fundamentally wrong here. I speculate that there’s probably an ideological element that came back the way Bruce did, that came back a long way into the Australian psyche. I can only speculate that when those gentlemen returned from the national ALP conference to find that their state governments were no longer going to have very much money, that it was also a society that was intensely and deeply and fundamentally racist and also where frankly, we don’t like talking about it much, but eugenic views of the world were almost assumed as the starting point for the way in which debates about health and what we now describe as debates about disability were conducted. And so I think what we’ve really got here is part of a deep national shame that we really need to start thinking about and communicate as a national concern, something we have to make good on, because we’re starting from a long way behind. It’s not just about service provision, because in a sense, if you apply it across the board, we’re not that bad at it. What we’re bad at is completely and viscerally ignoring the needs of Australians living with disability. And I say the “we” there in a very unkind way, applying it to everybody when I’m probably talking to people that are fairly deeply concerned about it, because you’re all here. But I am making a bit of a judgment about how we could have got here politically and I think you have to have some explanation that’s as good as it is.

The other point of course for why we are where we are Bruce has already made the point compensation schemes work all right this is another clue to the whole reason why we think that’s fair enough. If you’re disabled because of an accident, we think something should be done about it you should be compensated for it, and so I think that’s another clue to the visceral, ideological reasons why we have so badly ignored this area of social policy for so long.

But it also means the stakes of the owners of the insurance policy schemes, the insurance schemes, the statutory insurance schemes, so you do something about that, and the Productivity Commission proposes to do that.

So that’s where we are. That’s the problem. The Productivity Commission provides the solution and what we’re doing is campaigning to get a government to implement the Productivity Commission or substantially implement the Productivity Commission’s recommendations. And they haven’t made their final recommendations yet. We don’t exactly know in detail what they’ll be, but we speculate from the fact that the interim report is pretty good, pretty solid, that the final report will detail things that we would very much like to see implemented as soon as possible.

So running through where we’ve ended up as of now we’re in the rundown to a period, where, as Rhonda says, we really have an opportunity over the next three to six months, perhaps a little bit longer, perhaps shorter, but I suspect a bit longer, to make an impact. To get the Commonwealth government to come to an implementation or to deliver an implementation program which is meaningful, that they are going to put in place a scheme, a starting date and a program in order to do that. Because it’s a big job. For a start, just transferring the schemes across from the states is a massive job in terms of the bureaucratic issues, let alone the functional, legal issues and everything else. So all those things need to be started pretty quickly if we’re going to do this at any time like the next few years.

So, when the Productivity Commission report came out, our campaign needed four things to happen. First, the report needed to be good, and it was. Second, the report needed to be embraced by the government, and it was, not quite as warm an embrace as we wanted, yeah, Rhonda’s frowning at me, but no, I think it was a reasonably warm embrace. There was a bit of a move back from it after a couple of days and of course I think importantly, and to be fair to the Opposition, a fairly strong representation of bi-partisanship from the Opposition. So the Opposition’s spokespeople were pretty strong, saying that they would support the initiatives if the government were to pursue them, or they would pursue them themselves if they were in government.

Last minute leaks which were critically important to us, and I didn’t think we would get it, was a very strong support from the commentariat. So what we found is there is this sense I think, amongst people, a wide variety of commentators from the most conservative to the most left wing, if you like, journalists, social commentators, columnists that something needs to happen in this. Something needs to change, there is something wrong. So we had this quite generous kind of response from the media and from the commentators and that was a pleasant surprise. So, that set us up for a run-down into I think a dual exercise. We are running a… I wouldn’t have said this only a few years ago, even only a year ago I think, when I was first engaged to do this job… we are running a social media campaign. A year ago I would have said, don’t ask me what that is. But it means you’ve got a web page and you’ve getting people to Twitter, and you’re getting people to participate in the virtual world, rather than necessarily the march down Federation Square in Melbourne, yes, so we’ve that, if anyone doesn’t know it, it’s everyaustraliancounts.com.org.au and that’s I think, essentially the key starting point for the rest of what we’re doing. We’ve got the commentariat, we’ve got the parties, we need to get Australians to understand that something needs to be done about this, because only they can put the pressure, we can, Bruce can, Rhonda, me, anyone, Robert, can go down and talk to anyone we like, Jenny Macklin, Bill Shorten they’re not going to move, we live in a democracy whether we like it or not, and I like it, we live in a democracy and they’re going to move, they’re going to respond when they feel that people want them to respond. They’re going to make judgments that they think is about the way in which they can take policy based on what public support there is for certain policy initiatives.

So we need to get the Australian people to think about this in terms of their own language about fairness and to speculate about why this major unfairness could continue to exist and to explain that in as simple terms as we can. So that’s our website. The other thing we’re doing, following on from that point, is making sure that we go and see, or we provide people with disability the training to go and talk and recruit members of parliament as their champions. Rhonda made the point we’re in a new… it’s suddenly become unfashionable to say a new paradigm, it was very fashionable for a while, but a new paradigm where of course every member of parliament, I think it’s a misquote of somebody famous, I can’t remember now, but every member of parliament is a king, or queen, because any one of them can change the whole course of the parliamentary future of the government or the opposition. So it’s not just the Independents. So we’re recruiting champions in all the political parties to support our cause.

So essentially that’s what we’re doing at a political level. We’re trying to overcome I think, I won’t say centuries, Bruce brought us back to Elizabethan times. But we’re trying to overcome many generations of inbuilt prejudice against doing something serious to make sure that people with a disability have independence and experience the kind of fairness that every other Australian expects as a right. Thank you. [applause]

Christine Bigby:

And the final speaker this afternoon is Professor Jim Mansell who is coming from a different perspective but similar in many ways. He’s been involved in the policy and practice and research around intellectual disability services since 1970, when as a student he was involved in the closure of one of the large institutions for people with intellectual disabilities in Wales. He was the founding director of the Tizard Centre at the University of Kent, Canterbury and he’s now Professor Emeritus there. He’s also been a Commissioner in the UK National Social Care Inspectorate and been a member of number of independent enquiries into disability services in the UK. Throughout his career he’s created much of the knowledge about the provision of support for people, particularly with challenging behaviour, and around active support as an intervention as a means of supporting people to be engaged in their own lives. More recently, he’s completed a major report for the UK government called Raising Your Sights, which was just that, about raising the sights of what is possible for lives of people who have severe and profound intellectual disability. He’s been visiting Australia and collaborating with us at La Trobe around research and advising on services in Australia since 2000, so he’s not just a blow-in from overseas, he’s got significant knowledge about our context here in Australia. And I’m really pleased to announce that he’s just been appointed as a Professor of Disability Studies here at La Trobe as part of the commitment by the university, putting more resources into strengthening the disability research that we undertake here. So welcome, Jim.

Jim Mansell:

Thank you. Well, first of all I want to say that I think the Productivity Commission report is an extraordinarily important step forward. It’s a cogent, balanced, considered proposal that would make a huge difference to people with disabilities, their families, and actually for the quality of life in Australian society as a whole in the future. So I want you to see my comments in the context of that general welcome and support.

The report’s been heavily informed by the experience of people with physical and sensory disabilities using individualised funding arrangements to direct their own support. That’s entirely appropriate because these pioneers are people who’ve led the way in changing our thinking about what’s possible in this area. But of course, many, perhaps most of the people using specialist disability services are people with cognitive impairments like intellectual disability. For these people, decision making often needs to be assisted. And so the appropriate model of support is therefore not just one of attendant care but one of skilled facilitation, to help the person develop and grow and to enable them to successfully take part in the activities of their own daily lives and in the life of the community.

So, for example, a person with severe intellectual disabilities and serious challenging behaviour needs support from someone who not only has a good relationship with them, but who also knows how to manage the level of demand in everyday situations so as not to trigger challenging behaviour. And that has implications I think for the way the Productivity Commission report approaches the provision of direct support workers that hopefully we’ll see addressed in the final report.

The second implication of assisted decision making is I think that we mustn’t underestimate the extent of ignorance, prejudice and low expectations towards people with severe and profound disabilities among the public and among professionals. Many people still believe that much poorer standards for these people are all that can be achieved and are acceptable and appropriate. Now the Commission report acknowledges that there’s a problem of bad judgment in selecting support in respect of interventions, where it says that they must be evidenced based. So it won’t be open to people to blow their individual budget on sending their autistic child to go swimming with dolphins because they’ve been told that swimming with dolphins cures autism. A pending disappointment on return from Florida.

I think that families beaten down by their long experience of lack of services or poor quality services, and responding to the marketing brochures of service providers, might, as things stand, end up choosing institutional care it wouldn’t be called institutional care of course but they’d choose institutional care instead of supporting people in the community.

This would not only achieve less than could be achieved for their disabled sons and daughters, but it would create an easy option for people looking for cheap services. When the shine wears off, these places present huge problems, which take an enormous amount of money, effort and time to undo. I speak from a country which as it began to close its Victorian institutions for people with intellectual disabilities, in the places where people had least wit, imagination and commitment, built new institutions. And twenty, thirty years on, we are now closing those institutions, recognising that they shouldn’t be part of the solution for the future. So I would want to extend the requirement that services purchase should be based on best practice, on evidence, to all of the services concerned within the scheme.

My third and last comment also relates to supported accommodation services. I was actually surprised that the report didn’t explicitly embrace the separation of housing and support that’s been a common theme in disability discourse for many years. In many countries, the development of group homes has given way to the provision of housing, social housing, rented housing in the private sector, part or sole ownership of housing, and the separate provision of support on the domiciliary care model. The advantages of this are seen to be that separate housing and support usually gives the person more housing rights, and it also tends to avoid the re-creation of institutional practices when staff think of the group home as their place, rather than the residents’ home. Separating housing and support doesn’t stop people choosing to live together but it does stop people being forced into situations that are administratively expedient but actually unworkable. And of course we should note that everyone, no matter how severe or complex their needs, can be supported well in their own home, in the community, if we have the will to do so. Thank you very much. [applause]

Christine Bigby:

Just before we open up for questions I’d just like to pose a question to members of the panel for each to answer fairly quickly. What changes are necessary in other systems if the NDIS is to be introduced and is to be successful? Because at the moment the way the Productivity Commission report stands, it leaves out housing, education, the health system and places enormous reliance on mainstream services and the use of mainstream services. So what other changes might we need to bring about in those other systems or in the broader legal system to make the whole thing work better together. Bruce?

Bruce Bonyhady:

John, do you want to…

John Della Bosca:

Well, I think one of the longstanding issues is the whole issue around, should we, without getting too far down the track, should we have special things to deal with a disability at all? Should not society generally be shaped so that people with a disability can have fairly universal access to the transport system that everyone else uses, to the education system that everybody else has, and so on. So I suppose my point is, my starting point would be that the NDIS would take us a lot closer to that kind of framework that perhaps the housing system would need to change along lines to allow for the kinds of things that Jim’s described, to be much more universally put in place, and obviously the education system needs to change in several important respects. Similarly so, it seems to me a lot of those things around simple points like access, but the big gorilla in this debate that none of us has spoken about is the workplace, and when you think about the modern workplace, one of the things that will be happening to the Commonwealth government and all state governments is that employers will be screaming at governments for the next ten years in Australia as to where are the workers where are we going to get the workers. So if we’re not going to have very large scale immigration and we can’t get the people with the right mix of skills to emigrate anyway, then why aren’t we making sure that we remove the barriers to people with disability to be able to enter the workplace in much larger numbers than they currently do. So it seems to me while lots of areas of social and government service would have to change, the biggest thing that needs to change is the attitudes of Australians generally to their work colleagues and I suppose employers, to their workers.

Bruce Bonyhady:

Chris, I think one has to start with the question about, what are the boundaries of this scheme? And I think that the Productivity Commission has got that very right. You know, it says this is about funding and structuring people’s special needs in terms of their disability and that necessarily then, you have all the interface issues as you say, with education, with housing, with health, with aged care, with the income support system, and I think what they say in the report, again which I think is right, is that there needs to be detailed Memorandums of Understanding between the National Disability Insurance Agency and those other sectors. And so I think part of the answer will lie in the way those memoranda are framed and structured. But in thinking about it, I think in addition to the point that John made, that we should never underestimate what the agency itself is going to be able to do, to force change in those other systems that are going to be vital to the successful implementation of this scheme. You know, as individuals, we have limited ability to advocate. As an agency with an annual budget of $12 billion, you have a very different capacity to advocate. You can write annual reports, you can quantify what some of these barriers are costing in terms of the scheme itself but also in terms of opportunity cost so I think the agency itself will become a huge force for positive change and deal with many of the issues that you’re concerned about.

Christine Bigby:

Rhonda?

Rhonda Galbally:

I ought to sound as optimistic as Bruce. The National Disability Strategy sits there as I speak. I think it’s a very good, high level strategy that I hope you’ve all read. It’s an inter-sectoral strategy as it must be because it’s about changes of every system to do with disability. And it sits inside a functional department the department with the largest budget, one of the largest budgets. There was some discussion when we did the Shut Out report, the consultation, that there should be a Disability Office in Prime Ministers and Cabinet, the history of those offices is that they don’t achieve anything, because they have no budget. So sitting in facsia (??) seemed a very good idea and yet, that leads to the dreaded construction called an interdepartmental committee and if you’ve ever been in government, when an interdepartmental committee is set up between other government departments and you, it’s a recipe for usually defensive nothingness. You know, people sit there defending their own patch and they’re very uncreative, unhelpful structures, usually. So the thought of an authority with money makes me very hopeful. On the other side, the Health Insurance Commission hasn’t given much change in health and medical issues where I think those paradigms needed to be challenged. So I think it would have to be a very conscious decision on behalf of the authority that’s proposed. The governance doesn’t lead one to think that would be likely to come from the governance, as the governance that’s proposed is mainly around financial and fiduciary responsibility, not around innovation, intersectoral reform. So I think that something would need to be done to really have that as an imperative, that authority, as it sits it wouldn’t happen. And of course, the trouble with work John, is that it’s a system of a kind but it’s not a system that government has done much about in a very systematic way, if you know what I mean, including not even employing, in their own right, so that the numbers employed by the Commonwealth Public Service have halved in the last six years of people with disabilities instead of increasing, so that would be a system which one would think could be fixed fairly easily, but hasn’t been.

The education system is the one that I’m hoping there would be maximum pressure on, as there needs to be major reform in that system which currently does not focus on the learning and development needs of children with disabilities at all, but focuses on disability, which is a completely different topic. And by not focusing on learning and development of all students it means that programmatically you cannot go to school and expect anything, particularly, if you have a child with disabilities. And I include all schools in that brief summation.

I would love to see this… and clearly it will be… but it would have to be a bit more conscious and in fact it makes me think Bruce, that that’s something the independent panel should push on. We’ve got a run-up till the submissions are cut off and really having it structurally embedded, that body takes on as its task reform in other systems, I think would be a major requirement of it. Really, we should put that on the agenda as well, because I don’t think it’s there as we speak, except in the size of it which doesn’t necessarily yield the results you want.

Bruce Bonyhady:

Rhonda, I’d already made a note, but it’s now been underlined.

Christine Bigby:

Do you have some thoughts on that?

Jim Mansell:

Well, the kinds of interaction that Bruce describes makes sense. I rather suspect that one of the things that’s also needed is a progressive approach to anti-discrimination legislation so that services that are provided for the general population are very clear that they’re provided for the entire population, and not for that bits of it that they choose to select. I served on the committee of enquiry in England after the death by indifference case in which six people with intellectual disabilities died in general hospitals in conditions of appalling maltreatment and neglect. And when that committee first started working, many of the medical professionals appearing before it wanted to argue that this was a disability issue. And it was an absolute light bulb moment when the committee realised that it was actually a legal issue. The law in England required public bodies to take reasonable steps to adjust their provision to the needs of people with disabilities, just as it does in relation to people from ethnic minorities. And these hospitals were failing to meet that legal duty. I have never seen such an effective response in the National Health Service as the report of that committee. Every single hospital trust in England has been working like fury because it’s technically in breach of the law until it makes reasonable adjustments. Far more effective than any of the reports about disability and health care that we’ve had over the years.

So I think that the new organisation will be very potent for the reasons Bruce has given but I wouldn’t give up on that overarching legal framework that increasingly needs to define it as the responsibility of everybody in society to make reasonable adjustments so that people with disabilities can live their lives.

Christine Bigby:

Thank you. We have time for some questions. If you have a question please put your hand up. There’s some people roaming with the mikes. There’s Bruce Wood over there in the corner. And the second one, John, here. OK Brian first.

Question:

It’s actually not Brian, it’s Julia Gillard, and I’m thinking of the beginning, the now famous beginning, of the PC’s report which described the current system as inequitable, underfunded, fragmented and inefficient and I would venture to suggest that a lot of Australians would regard the health system in exactly the same way, and yet it is an entitlement-based system. It uses the same approaches, holistic care, carefully described points of access, things like early intervention and most particularly it endorses the principle of reasonable and necessary care. So I’m thinking particularly of Bruce and John because you’re the political animals, I’m Julia Gillard, how can you convince me that the NDIS will not take us into the same sets of problems that health care has encountered?

John Della Bosca:

Well, I still make the point more than anything else that whatever problems people believe exist in the health system in Australia, they are dwarfed compared with the problems in the disability system. The same can be said of the education system and every other area of social policy. So while you can select failures within the health system, the overall point is that the health system is well resourced compared with the disability system I think is a no brainer. The health system is adequately resourced. You can argue at the margins two or three or four per cent a year but you’re not arguing fifty per cent a year, which is what the difference in the disability system is. That’s the first point. I think the second point which I think is quite important is there’s a massive cost to doing nothing with disability. If we leave the systems to continue to overheat as the Productivity Commission indicates they are, by overheating I mean, when there’s complete system failure, so one narrow example is when respite services break down, that means you get a massive knock-on effect, which then starts causing family breakdown which causes more permanent occupation of respite beds, more blockage, less respite available, more families go into crisis and so on. That just happens when the system is rationed and underfunded, almost as a matter of cycle. That will happen every three or four years in each state, at different times, maybe more often. So that will continue to occur and there are massive costs associated with that, because the only way to fix it is to tip heaps of money into it.

The other thing I think is there’s a massive cost to doing nothing, but there’s a massive cost offsets, even in the health system. The fact is there are large numbers of acute beds being occupied by people that could be adequately supporting themselves or could be living with families in the community, who aren’t because disability services simply doesn’t pick them up, and that’s a massive cost to the health system. Also, I would dispute one thing. I think one area of policy failure in the Australian health care system is early intervention it’s something we’re particularly bad at I would have thought, compared to other similar jurisdictions but we’re going to get a lot better because Rhonda’s now running that. But I think the other thing that I’ll come back to my point and I’ll use an analogy which may be unpopular, the point was made earlier that today the newspapers weren’t talking about disabilities, they were talking about the defence forces and the role of women in the defence forces, and you know, going back to Bruce’s Elizabethan times, men used to be the soldiers because they were big and they were able to… allegedly all the differences between the genders, now it doesn’t matter if you’re 55 kilos or 155 kilos if you’ve got a sub machine gun and a grenade. So in a sense, that’s really the issue with the workplace. We imagine a workplace which absolutely restricts people with a disability to roles which now they can have way beyond our current imagination with just a little bit of work and a little bit of thought. So, the NDIS, proper independence and security for people with a disability is the key to unlocking a massive amount of lost productivity in the Australian economy. So, are you convinced, Julia?

Bruce Bonyhady:

I’d just like to elaborate for your benefit Julia, and that is I think to compare disability with health… as John’s indicated, significantly underestimated the difference in terms of the current shortfall. No one would suggest that health expenditure is half what it should be. The second point is that we are talking here about reasonable and necessary support we’re not talking about families no longer doing what one would expect any family to do. To replace informal care with formal care would not cost an additional 6 billion dollars but an additional 30 billion dollars. So we’re talking about a marginal increase compared with that 30 billion. We’re saying we’ve gone too far in getting the balance right between informal care and formal care. We have leant far too much toward informal care. As John’s indicated, what that is doing is putting enormous pressure on the system. I’m told that in one state, they no longer have any free respite beds because every bed is filled by children and adults who have been relinquished by their families. So this is a system teetering on the edge of crisis. When you then project out the demographic trends and the social trends, what we have is a growth in demand for disability services around 7 to 8% per annum. If you put that together with what is happening in the hospital system and the health system, which is also growing at 8 per cent, and you compare it to GST revenues that the states have, those two items together, health and disability, when you add in the $6 billion, consume the entire GST revenues of the states. So the fiscal imbalance that John referred to is acute and unsustainable.

So the one growth source that the states have is already fully consumed by health and disability, and every year that we let the current system remain as it is, it is being outstripped by about 3%. So there is a fiscal imperative as well as a social imperative to act here. Are you convinced Julia?

Christine Bigby:

I might just say here to Julia too that it would only begin bringing the level of expenditure on disability up to the level of expenditure in the UK. So it’s not out of the ordinary it’s not more than other nations are spending.

One question from John here and then we’ll go over there.

Question:

John McKenna, Individual Support Package with VALID. Jim, I was delighted to hear your comments in relation to people with intellectual disabilities. You’ve also said a favourite word of mine and that’s relinquishment, as we all know it is a big issue. Can you give us any more heads up, I guess, examples from the UK where ideally we’re on the same agenda, but people with disabilities haven’t had the equal voice?

Jim Mansell:

Have had an equal voice. Right OK. Well I think there are plenty of examples. I think it’s trickier than people often think. I’ve certainly been present at occasions where there’ve been people with intellectual disabilities who I think have been unsupported and out of their depth. Sometimes this works to their advantage. I appeared before a House of Commons committee talking about people with profound and multiple disabilities and this was just after the general election and the incoming government was disinclined to respond to my report it was hoping it would just go away. And the civil servant briefed to attend was the co-director of services for people with intellectual disabilities in England, a man called Scott Watkin, who is himself a man with moderate intellectual disabilities. He sat next to me, I know him well, and I looked over his shoulder and read his brief and read the bit that said that if he was asked would the minister respond to my report, he was to say something equivocal (a form of words was suggested) and sure enough of course, members of parliament asked, will the Minister respond to Professor Mansell’s report? Yes, he said. Good on him.

I think that we have to acknowledge that for some people assisted decision making is important. Our approach to assisted decision making should be specific to what people need assistance with and not global. And if you do that, if you take that approach, I have worked with people with the most severe disabilities in our community who are still able to direct, at least to some extent, the framework of support and provision around them. It does require of course that people are listening. And so you have to train people to notice. But that’s probably true anyway.

But let me say, there are good examples in the UK, but you have great examples here too. Don’t think that things are always much better elsewhere they’re not. I see just as much very good practice in Australia as I do anywhere else in the world actually. And I also see bad practice too.

Christine Bigby:

And I think it does raise that issue that not everybody can drive their lives independently and there needs to be recognition within the new scheme that it’s not automatically parents or it’s not automatically service providers, but there needs to be a group around each individual to support them to make the decisions collectively. People who know them well and who care about them. And you can’t always assume that there’s always one person around who’s going to be able to represent their best interests and I think that’s something that the report is fairly silent on and I’m sure there will be lots of responses to the report around that issue.

Jim Mansell:

It would actually be a good working principle. There’s never one person who can act as a proxy. There should always be some checks and balances in the debate.

Question:

My name’s Shauna, and I just wanted to ask, because I know that there’s three tiers and I know what the three tiers are but I go around to small groups of people with disabilities and we talk about our concerns about this scheme, and the biggest one is, which this report doesn’t answer, is who’s in, who’s out. And the labels of profoundly disabled, we are … the word disability has negative connotations as it is, and now we’re going to be categorised even more. We have to be profoundly disabled to get into this scheme. So, there are a lot of people sitting out there worried and concerned that things aren’t going to change drastically for them because they may fall into tier two, which is just mere referral to services.

Bruce Bonyhady:

Look, the question that you’ve raised is a very important one and it’s certainly one that I and the independent panel have raised with them, which is to try and get some greater clarity about where that boundary line sits between who’s in and who’s out. What happens to people who may be getting minor service support now but may not be scheduled or proposed to get support under the NDIA. The responses we’ve got is that there’s not… they haven’t intentionally left people out, these are the best estimates as to who’s got a significant support need, and if you’ve got a concern about that, and you’re not alone, I think the best way of dealing with it is to ask the PC join with others who are asking the same question for some greater clarity on that point, about where the boundary line is likely to be, particularly between tier two and tier three. And I think it’s also an issue that’s of great interest to state governments because under the proposal, if you like, most of the disability services would go to the NDIA, but are there going to be some services that they’re going to be left to provide or is that done by local government? How does that boundary system work? How do things work at the boundary and close to the boundary?

So it’s a very legitimate question to be asking and one that I would encourage you to ask directly of the PC, because I think the answer, as you say, is just not very clear at this point. Having said that, they have done an enormous amount of work on the data, these are the best estimates that we’ve seen of those people who need significant support. They’ve taken the work that we’ve done at the Disability Investment Group to a whole other level in terms of its sophistication and quality. And they’ll do further analysis on the data they’ve got between now and the final report. So just make sure that your view is heard. It’s important.

Christine Bigby:

Thank you. There’s one more question down here.

Question:

I feel quite strange. The only question directed at Rhonda. But my name’s Carl and I’m a student here. And you were talking about the family, and I might be wrong but I think I’m the only student who receives, I might be wrong, as I said, who receives support from the university who’s actually here. I don’t recognise very many people. I think that goes against what you were saying about it may be it agrees with what you’re saying about being a family. There’s not much of a family. I think it’s very disjointed I think. And I think there’s a lot more advocates here and service providers than people who are actually directly involved. I know people who are involved. I just want to say to everyone as well how can you get momentum for your scheme if you are not talking to people who are not directly related to the scheme? In my opinion you need to expand to people who aren’t directly involved to make them want to get directly involved. Otherwise you’re preaching to the choir. So how can you expand your net I suppose to encompass people who aren’t directly involved but who should be involved? Because every Australian counts but you’re preaching to a small population at the moment.

Rhonda Galbally:

Could you keep the microphone there and could I ask you for your ideas because it is extraordinary that every person with a disability at La Trobe University isn’t here. Why wouldn’t they be here.

Question:

Can I say again, some people have driven hours to get here. I had to come one minute from my class, before it started. So it’s not hard. And I think this is what you’re saying it’s not really a question, I’m sort of going on my own little rant here, but advocates advocate to people with a disability, and I think in a way it’s appreciated by many people, especially people who have an intellectual disability, but I think people with a disability should advocate for themselves a lot more, and it’s not blaming anyone, but it’s sort of the notion that advocates can do it for us. When I think if you want proper change, which marching on the street, you can’t get one advocate to march on behalf of 3,000 people they serve. And if you want real change, you have to get people, your friends who aren’t necessarily affected but could be affected, and definitely… I mean, I don’t have all the answers but I definitely think we should look past this room here to outside.

Rhonda Galbally:

I think that’s very good.

Question:

Sorry, it’s not a question but what do you think you can do, what do you think should be done? By November. What can be done by November?

Rhonda Galbally:

Well, John, you’re running the campaign.

John Della Bosca:

Well I think you can just keep on going with what you’re doing. And obviously we might get to being a little bit sharper in terms of communications publicly. We’re speculating now in our campaign plans and preparations about the role about reaching out with some advertising and looking at other ways of extending the human base of our campaign. Like, I think some of these things are unpredictable. I’ll give you some extreme examples and they’re from New South Wales, only by coincidence. I’m not New South Wales obsessed, because this is a national campaign and the forums have been going on across all the states. But within two days we had a forum into a town called Port Macquarie which is within the electorate of Rob Oakeshott, the famous Rob Oakeshott and in the electorate of Wagga which is a Coalition held seat in New South Wales, sorry, the Riverina, the Coalition held seat in New South Wales. Now those two towns are almost the same size, very similar attitudes and aspects, probably roughly the same number of people with disabilities in them. At the Wagga forum there were 360 people, at the Port Macquarie forum there were 5. So I don’t really understand what goes on sometimes. I’m trying to do a bit of a de-brief on why those inconsistencies occur in campaigns but there is a patchy acceptance, you’re absolutely right and one of the frustrating things is there’s a lot of people living with disability who are not grasping the idea as clearly as they might that this is a one-off opportunity to fix a lot of things, so we’re working away, improving our social media campaigning, intensifying our lobbying, and, as I said, trying to recruit more people into campaign activity and we’re trying to make that as friendly as we can for people who might be living with disability. So again, there’s a big focus on social media. So they’re the kinds of things we’ve been doing.

Question:

We’ve got a question from the internet. Nick on line wants to know a question for Bruce. Is the principle of mutual obligation as applied to the unemployment benefits scheme a key component of the NDIS? This appears to be necessary to the benefits mooted to arise from an alignment of interest between service providers, users and family. It also seems implied in the argument relating to the gross and net costs of the proposal. Do you believe this could be a source of unintended negative consequences if the proposal is put into action?

Bruce Bonyhady:

Could you just repeat…

Christine Bigby:

Whether there would be a mutual expectation as there is in getting unemployment benefits, that you have to go out and do work for the dole if you’re going to be paid.

Bruce Bonyhady:

As it’s framed, it’s an entitlement scheme, so your level of disability and your need determines what you’re entitled to. So there is no, in that sense, there is no mutual obligation here, there is no means testing. The only means testing would apply when people reach the age of sixty-five and the Productivity Commission says that for people who have been born with a disability or have acquired a disability early in life, they certainly won’t be means tested out but a few people who acquire a disability late in life, just before they are aged 65, will. In that sense this an extraordinarily generous change, because what is says is, there is an entitlement based on need where there is no entitlement today.

Christine Bigby:

I think we might have time for one more question. Daniel, over here.

Question:

My question really follows on from the comment earlier around, I’m concerned that we’ve got a long way to go towards achieving an NDIS. Two stories in this morning’s Melbourne papers really highlight that. The first one was a very unscientific survey in the Herald Sun asking respondents around the role of women in the armed services and being able to take on any role, and 70% of respondents said it was inappropriate for women to take on any role within the armed services. And the second was in this morning’s Age where they quite cheerily report on the opening of a 14 bed facility, for want of a better word, for the accommodation for people with mental illness. Now in both of those arguments, one around gender equality and one around accommodation support for people, I would have thought, or we would have all hoped I imagine within this room, that those debates were dead and buried twenty years ago, but the two leading papers in Melbourne seem to be quite comfortable running stories which suggest we’ve got a hell of a way to go to change community attitudes. So in line with the earlier comment, my concern is, how do we effectively get the message of the benefits of an NDIS out to the wider population, and how well are we doing this task?

Christine Bigby:

Who wants to…

John Della Bosca:

Well, I suppose I think we’re doing reasonably well. I like to compare this… again, you can get yourself into trouble with these things, but a couple of weeks before the Productivity Commission enquiry on disability came out was the aged care Productivity Commission report, which, even though there is intense, and should be intense interest in aged care issues, has essentially sunk without a trace. So, I think we’re doing all right keeping at least a debate afloat. It’s happening, it’s going on. The extent to which we’re recruiting enough people to serious activism around the debate, I think that is a major question mark. It goes back to the point made previously. And it’s tough. I think there’s a number of points. Someone mentioned this is… this tends to be the lot of oppressed people. It’s perhaps a rather extreme way to put it, but when people are not used to getting fair treatment, they assume that they won’t, so they respond that way. And in responding that way they create the expectation amongst the powerful that they can continue to be dealt with in that way. So I think it is, there is a bit of work to do to get people with disability focused on the fact that they can make a big change. The second thing I think is, back to Rhonda’s point about unity. There is a little bit of disunity in the family over, or there has been historically, around even competition between different shall I say, impairment groups, over… there’s a limited pie, back to this whole idea of rationing. There’s such limited resources, who’s going to get what? Is it going to be children or old people, or is it going to be people with, you know, physical disabilities, people with intellectual disabilities, all that sort of argument goes on. There are going to be people with cerebral palsy, there’s going to be people who have disabilities as a result of accidents or brain injury or so on. Unfortunately that is a real part of the politics of this issue and it’s back to Rhonda’s point about divide and rule. So we have to overcome all those things. But I think we are getting there. This is a campaign that’s changed disability from shall I say a fairly narrowly focused issue, which it was very hard to get Australians focused on, to being a serious issue which is being taken very seriously, and indeed, some of the evasion tactics being taken by some of the people in the federal government to get away from this debate, I think underlines the fact that we are being quite successful at forcing a debate about this.

Bruce Bonyhady:

I’d just like to add a couple of points. I liken this… I’m an Aussie Rules fan so I liken this to quarter time, where at quarter time, our side’s played well, we’re a couple of goals up, but it’s quarter time. We might even be three or four goals up, but it’s quarter time. There’s three quarters to play and anything can change here. OK? And we could lose completely. And I think that has to be remembered by us all. We are a quarter of the way through the biggest game certainly I’ve played in my life. And to get from here to victory, I think there are a few things we have to remember. The first is that the reason the NDIS has been so successful to date is because it’s been a unifying claim. For the first time the sector has argued for the one thing, rather than for different things, vans, accommodation, cerebral palsy, autism, it said need is the basis. So I think the way Jim framed his comments on the PC report were just the way we need to do it. This is a terrific report and here are some ways the outcome could be improved and be even better than envisaged in this report. As opposed to what I’ve heard in some quarters where the sentences begin “the difficulty I have”, “my concern is”, you know, that negative approach. Our politicians will only endorse this if they think it’s an electoral winner and they can satisfy the disability community and everyone who attaches to it.

The second issue I think we have to overcome and John on many occasions have referred to that, is what I call the exhaustion and the tiredness of this sector. Most of the people in it are tired. They’ve battled for years, and here we’re sort of saying, look, there’s another battle, it’s a bigger battle, it’s a better battle, it’s a more important battle, but get your battle gear on. And they’re just tired. And so, getting people to realise that they’re empowered and can fundamentally change the outcome for themselves and future generations is a huge effort. And so the work that John and others are doing is just vitally important in all of that.

And the final point I think is that a lot of the focus in the discussion today has been around the Commonwealth government. The other critical aspect in this is how the state governments respond because disability, notionally at least now, is a state responsibility. So we have to work on both our Commonwealth and state politicians and have got to work on them to work together which they’re not exactly good at, to effect this reform. And so that political pressure I think is critical to getting the outcome that we know.

Christine Bigby:

Jim and then Rhonda, and then we’ll finish.

Jim Mansell:

OK. I first of all suggest that you don’t use what appears in the press as your barometer of public opinion. It’s not a very sensitive measure I think. I think what you’re doing here and I think you’ve made much more progress than, Daniel, your comments imply, is that you’re shifting the frame within which the debate takes place. And I think an enormous of progress has been made just be the publication of this report. In the spirit of brevity I want to respond partly to the earlier comments about what more could we do to build support for this and I want to pick up on something Bruce said that hasn’t really recurred in the conversation, which is that this isn’t actually just about Australians who are disabled now. It’s about all Australians in the future. Every family, every single family, every prospective parent, every prospective grandparent, is terrified at the point of the birth of a child or a grandchild that that child might have a significant disability. For all sorts of reasons but not least because we treat disabled people terribly badly. They’re an enormous potential resource. And they’re not tired, they’re not exhausted, they’re people who are fearful of what might happen if an NDS isn’t created. It doesn’t exist properly. So it might be worth thinking about focusing some of the attention more widely than just the disability community.

Rhonda Galbally:

The only thing I would add is that I think to get this scheme up, it’s going to require what I would call a generosity of spirit from almost everybody really. Like, what Jim just said made me remember the work I’m currently doing which is back in preventative health, thinking about the Quit campaign with the ads with blood on the hanky which don’t change behaviour according to a lot of research but do create an enabling culture that has led to plain packaging now sitting in the House of Representatives. Now what would be the similar approach to this topic? And I think Jim hit the nail on the head actually. And it would require a generosity of spirit from people with disabilities ourselves, to enable a really hard hitting fear campaign, because we’ve spent all our lives saying, “Hey, it’s not so bad to be disabled actually” and yet the fear that people would have a child where there isn’t adequate capacity in the community might do the trick. The fear that in my lifetime or in yours, with the colleagues you’re talking to, that they won’t get something out of the scheme, there’s a generosity of spirit in that, saying “well, you may not actually” because there has to be a cut-off point somewhere, but it still will be a much better world for hundreds of thousands of people and we’ve got to somehow get that generosity of spirit into those discussions too. Because it’s a matter of age, we might be too old to be part of it, it’s a matter of disability and you might not be disabled enough to be part of it, but still it’s better. And so I just think we’ve got to… it’s how do you get that into what we’re doing. And how do we get people willing to take the step, to take the action to come to the rallying points, whether they’re conferences or congresses, or forums, to really stand up and be counted, to write the letters to the media. I mean, maybe we need the kits to help you write the letters. Maybe we need to provide more tools. But it is around that“ Well I’m not going to do that tonight. I’m gonna do this.” That’s a generosity of spirit. And at the end of the day, that’s the big… this is the biggest reform as Chris said, she started the forum where I think we should end. It’s the biggest reform since Medicare. I mean, it would make a life better for 360,000 people and more because there will be more at the margins and more as time goes on. And I just think we’ve got Paul Kelly, again, not a radical left wing commentator, coming out writing the most unambiguous piece I’ve ever seen. I mean, the Australian media well, that needs to be reproduced a million times. And how can we where’s The Age? They’ve hardly said anything really. Our very Victorian media is letting us down a bit. So I think there’s a lot we could all do really. I’m just hoping we’ll get there by November because I do think that if there’s not something positive said in November it does worry me. So we haven’t got very long really.

Christine Bigby:

And I think the Productivity Commission had the largest number of submissions from the public that any of its enquiries has ever had. The responses to the report are due by the end of this month and it would be good if they had the largest number of follow-up responses. So if everybody in this room decided to make a response that started with Jim’s phrase “This is a major step forward, this is a great report” I think that might show some of that support, and if we all got five friends to do it, I think that’s one of the steps along the way as well as supporting the campaign that’s being run at the national level.

So, thank you very much for coming, all four of you, and thanks to the audience for your participation today. Thank you.

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