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Changing the disability rights climate

2nd Annual National Disability Summit
Melbourne, 15 September 2011
Graeme Innes AM, Disability Discrimination Commissioner

I acknowledge the traditional owners of the land on which we meet.

How many of you saw the story, on Monday this week, that this summer the area of the Arctic covered by sea ice was a record low for recent history? And that the scientists say we are on track for no Arctic sea ice at all in 2030, for the first time in 125,000 years?

Why do I mention that? I'm not actually here to talk about climate change, even though it raises serious human rights issues. Our neighbours in the Pacific, and much of Asia, face displacement from large areas, or even from whole countries, to an extent which looks likely to make current refugee flows around the world and to Australia seem very, very small stuff indeed. Within Australia itself, Torres Strait Islander people, and some Aboriginal people, are already facing displacement from their traditional lands, and loss of culture from rising sea levels.

Even closer to home, as a parent as well as a human rights practitioner, my children have the right to a world that's fit for them into their future.

But why I mention the sea ice today is that, on many disability rights issues, we're used to a glacial pace of change at best.

It's over 60 years since the Universal Declaration of Human Rights declared human rights for everyone, without discrimination - but somehow managed to miss mentioning disability. It's 30 years since the International Year of Disabled Persons. It's already 20 years since the start of drafting of Australia's Disability Discrimination Act.

We've spent decades so far trying to build a society that's fit for all of us to live in. Chipping away at the ice - at the barriers that exclude men, women and children with disability from full and equal participation in, and contribution to, our society.

Certainly, we've seen progress. I'm pleased to have been part of movement forward, in partnership with people with disability and governments and industry, on issues like access to public transport, and buildings, and information and communications. But it's painfully slow, and patchy, and incomplete. Progress on the scales of geological time is hardly what we should be aiming for, when we and our children live our lives on the much shorter human timescale.

And on top of that, we see winters of discontent, where barriers gradually build up again, in areas where we hoped the ice was clearing. I'm thinking of things like people with disability continuing to have no choice but to live in institutional environments, including the disproportionate numbers in our prison populations. Things like disability employment rates in the Australian Public Service - going backwards, not forwards, over the last two decades. And this in a period where technological developments ought to have been reducing, or eliminating, many barriers. I won't repeat the details here, but there are recent speeches I've given on these issues available on the Commission website.

Even in the area of technology, barriers keep building up. I'm thinking of consumer appliances, which somehow manage to use digital displays and controls, to produce a result which is less accessible than the manual controls they replace. So that people are needlessly, and expensively, deprived of years of independence and dignity, for the want of a bit of programming, or a chip costing a few cents.

Years, in fact decades, go by in our work, and in the lives of people with disability around Australia, with barriers still shutting people out and shutting people in.

It's no secret: systemic change takes determined effort, and can take time.

But sometimes, a moment comes when glacial change actually happens very fast. When the ice melts, and when huge chunks of ice shelf break off, and fall into the sea. And at a moment like this, we can see a need to respond quickly, to watch out for icebergs, and to look for what to do about the changing climate.

I won't take the climate change comparison too much further today. It's not my role as a statutory officer to get into partisan debate. And climate change is obviously an area where, despite cross party recognition of the problem, and shared emissions reduction targets between the major parties, there is sharp disagreement on preferred solutions. And all this is in the context of a persistent campaign, by some sections of the media, that there isn't a problem at all, or that nothing should be done about it anyway. Claims, for example, that carbon dioxide emitted can't be measured because it's invisible, and weightless. I did like Malcolm Turnbull's suggestion recently, that anyone making that claim should try dropping a bag of dry ice on their foot, and see how weightless it feels.

But what's striking in the disability rights area, in contrast to many other areas of public policy, is how much agreement has been achieved in recent months, and how quickly: not only that there is a serious problem that has to be addressed, but on what the way forward should be.

At last year's National Disability Summit we were still looking forward to the Productivity Commission starting the public phase of its inquiry into a National Disability Insurance Scheme.

Before that, we had the ground-breaking - or icebreaking - recommendation for a NDIS initiated by Bruce Bonyhady at the 2020 summit. And the report of the Disability Investment Group recommending an NDIS, and an early investment in a major disability research and policy body. But as important as those developments were, that was hardly even the tip of the iceberg compared to what has come since.

As you know, the Productivity Commission delivered its final report on 31 July 2011, recommending a national disability insurance scheme, involving close to doubling of current funding for disability services and supports, and major shifts towards consumer choice.

Just 8 days later, the Prime Minister, the Assistant Treasurer, the Minister for Families, Housing, Community Services and Indigenous Affairs, and the Parliamentary Secretary for Disability were out in public releasing the report, committing in principle to implementing it, and allocating $10 million for initial processes to work towards implementation. Almost immediately, support for the recommendations came from the Opposition (both by its Leader and its disability spokesman) and by most State and Territory Governments. And just 10 days after that, the Council of Australian Governments signed on- not to every detail happening immediately, but to working in quite a short period to having an NDIS in place.

Quite fast movement then, even in the human world, let alone in the world of glaciers.

And leading up to the release of the report, and day after day in the Federal Parliament since then, members from both sides, and the cross-benches, support the implementation. I can't remember any other major public policy initiative in the last 30 years with support like that.

How did this happen?

We should acknowledge first up the work of the Productivity Commission, and the decision by government to ask them to conduct this inquiry. This is a report with great weight - and I don't just mean the two volume paper version.

I said to last year's National Disability Summit that we could expect excellence from the Productivity Commission in this process, but that doesn't mean the same thing as taking it for granted. The Productivity Commission has done people with disability in Australia, and the nation, a great service - in highlighting and analysing exclusion, and loss of opportunities for people with disability, as major economic issues worth significant investments to address.

I'm not saying the battle is won. But the tide is turning.

[[Some of you will recognise there some lines from a song which was performed by Roger Waters and the Bleeding Hearts Band at a concert over 20 years ago, to celebrate the fall of the Berlin Wall. One big advantage of the inquiry into an NDIS being conducted by the Productivity Commission, is that it isn’t an institution that could possibly be dismissed as bleeding hearts. And through many years of work on issues of microeconomic reform they have built up expertise and credibility in tearing down walls.]

The Productivity Commission report provides strong analysis, supporting the argument by a number of organisations, including my own, over the years, that an NDIS would have overall economic benefits likely to substantially exceed scheme costs, by facilitating greater economic and social participation by people with disability, and families and carers.

The report also gives welcome emphasis to the point that limitation of individuals' social participation, and life choices, is itself an economic issue, even when it can't be measured directly in dollars. This is consistent with the approach of Treasury, and the Australian Bureau of Statistics, which both emphasise human wellbeing, rather than solely GDP, as the appropriate measure of economic progress.

The report shows that thwarted potential, and limited life chances, for people with disability don't need to be invisible to policy makers, and to the wider Australian community, if we decide to look. And that social and economic arrangements that exclude or restrict participation by people with disability do have a weight, that is felt in people's lives - like a bag of dry ice dropped on your foot - and that can, and should, be measured and reduced.

For too long, people with disability in Australia, and their families, have been paying for disability with social and economic exclusion, and lack of choices. As a whole, Australia has been paying as well - both economically and socially - by missing out on making the most of the contribution that the millions of people with disability in this country have to offer. Bill Shorten has said that this is as unjust, and unacceptable, as putting a wall around one of our capital cities, and condemning everyone inside to inferior life chances and outcomes.

The Productivity Commission has shown evidence that better equality in economic participation for people with disability, could bring billions of dollars of economic benefits, and that a society which effectively includes all its members will be a more prosperous, as well as a fairer place.

The report does not neglect the human dimension of all this. There are passages which describe starkly the injustice faced by people with disability right now in Australia, and present an irresistible case to change it. Here's one:

Mike has an annual income of $150,000, which he spends on basics of life, but also holidays, a nice house and a car. In contrast, Mary, who has a severe disability, has an annual income - after government transfers - of $25,000, and she gets around half of her reasonable personal care needs met.

Beyond the basics, she can't buy the things that Mike can. She is so poor that she can't afford to top up her support needs to an adequate level. She would need another $15 000 to do so. She can't get out much, she needs a nappy because she can't get enough personal care, and she endures discomfort and indignity.

Earlier this year I wrote a media piece saying that I was over seeing claims on newspaper front pages about people who are on twice the median income, in one of the most prosperous countries in the world, still somehow being hard done by, and deserving of government assistance, ahead of people in real need. And that people on $150,000 were in the sort of poverty trap that most people with disability could only dream of. I decided to tone that down just a bit for publication. Maybe I shouldn't have.

But fortunately, the Productivity Commission has been at least as severe on this sort of thing as I wanted to be.

There are many people like Mike in Australia, and relatively few people like Mary. Under the NDIS, 15 'Mikes' give up $1000 each … Mary now has an income equivalent to around $40 000, and the 15 'Mikes' have $149 000 each, only a very little lower than before. The loss in wellbeing experienced by each Mike is low. The gain for Mary is high.

Of course, being able to present this sort of story, and analysis, depended on listening to, and taking seriously, the experience of people with disability and their families and organisations, and relaying that experience to the public, and to decision makers. Also critical was the extensive input from such a wide range of organisations. To mention just one, the Business Council of Australia were clear in their support for an NDIS.

Another key factor has been how clear and consistent the message from people with disability, and their families and organisations, has been. I pay particular tribute to the continuing work of the Every Australian Counts campaign.

Some people expressed concerns about how far the language of insurance and risk might imply a negative view of disability. But overwhelmingly, it was recognised that support for an insurance approach, rather than other possible responses, such as expanded welfare schemes, would be a key factor in moving disability issues from a welfare/charity model, to one based on rights and entitlements. And also in ensuring that a scheme promotes access and participation in all areas of life, rather than only providing an improved funding model for segregated services and segregated lives.

Despite how many of us there actually are as people with disability in Australia, disability has too often been strangely invisible in public discussion. Media professionals tell us that nothing cuts through like real human stories. And we've seen that in the media response to the report, which has been overwhelmingly supportive, and calling for action faster than proposed by the Productivity Commission.

I agree with the Productivity Commission that an NDIS is such a major reform that it's important to get it right. But I am immensely encouraged by the enthusiasm of some State leaders, and the government of Victoria in particular, to move forward with large scale trials as early as possible.

I'm also very encouraged by the decision by the federal government to allocate $10million immediately to start work on the governance arrangements for the NDIS. That sounds small compared to $6.5billion, but it is a critical investment.

I repeat what I said to last year's Summit:

There's more to a social insurance scheme than payments to insured individuals. Simply, there also has to be an insurer (or insurers). As well as paying benefits to individuals, insurers do all sorts of other things to manage risk. And these things, as it happens, look very similar to many of the major mechanisms for social change provided in the obligations in the Convention on the Rights of Persons with Disabilities.

…there are substantial precedents for roles for insurers - even in private insurance, but definitely in social insurance - as agents of social change through:

  • Awareness raising and attitudinal changeResearch and development of new technologies
  • Promotion of standards and guidelines
  • Funding and promotion of access to necessary equipment, facilities, information, services and supports
  • Individual and systemic advocacy including through the legal system.

On that last point, I note that the Productivity Commission recommended against the scheme funding advocacy, because of issues of conflict of interest when advocates want to challenge decisions within the scheme. That's an issue which I'd like to discuss further as the implementation process progresses.

But more broadly, the Productivity Commission clearly contemplates a National Disability Insurance Authority having most of the sorts of social change roles we argued for as part of accepting a social model of disability, and as a major means of meeting Australia's obligations under Article 4 and Article 8 of the Convention.

As the Productivity Commission points out, funding needed for these sorts of roles is very, very small, when compared to the total or the additional funding needed for support for individuals: a few tens of millions of dollars compared to billions. Or just a few dollars from each of us. It's barely small change in the context of an economy, with GDP approaching two trillion dollars. But in the world of disability rights in Australia right now, it would represent a huge difference.

For example, throughout my term as Disability Discrimination Commissioner, I have also been at first, Human Rights Commissioner, and more recently Race Discrimination Commissioner. With the very welcome appointment this month of Victoria's Dr Helen Szoke as Federal Race Discrimination Commissioner, I became the first full time Disability Discrimination Commissioner Australia has had since Elizabeth Hastings - another Victorian - completed her term almost 14 years ago. But to support that role, I have two and a half staff, and after paying them I have a project budget of about $30,000. You will see at once why I'm looking forward to having a National Disability Insurance Authority to work with, in pursuing the removal of barriers to participation and opportunity, and full enjoyment of human rights, for people with disability in Australia.

In the same way, I very much welcome the government's decision to establish a National Mental Health Commission. A very significant development from the draft to the final report is that the Productivity Commission accepted that people with psychosocial disability should be within scheme coverage, with issues of co-ordination with mental health and related services being issues to manage, rather than leading to exclusion of this group from the scheme. I hope the new Commission give early priority to establishing close working relationships with the NDIS, to ensure that the rights of people with psychosocial disability get the maximum benefit from the scheme.

It's been argued, rightly, that the budget bottom line shouldn't be a barrier to implementing the whole NDIS as soon as possible - because of the urgent human needs involved, and because the economic benefits will quickly outweigh additional fiscal costs.

Depending how the scheme is set up, it might even be possible to have little or no upfront impact on the budget bottom line.

I don't mean there won't be substantial costs, of course there will have to be. But my understanding is that when the Commonwealth allocates additional funds to the Australian Rail Track Corporation, for example, it does that by way of equity injection. Meaning that ownership of additional equity for the Commonwealth shows up in the "assets" column, to balance the amount in the "expenditure" column, instead of the expenditure all coming off a budget surplus figure, or onto a deficit figure.

This seems a fair enough approach. Long term investment in the economic and social benefits of better connecting us all together, is clearly different from current expenditure. And the same point would apply whether we are talking equity in a corporation that pursues those benefits by building and improving railway tracks; or a corporation that invests in removing barriers to participation by people with disability.

In my organisation's submission to the Productivity Commission, we noted that the "social change" roles of a National Disability Insurance Authority do not appear closely dependent on other major elements of scheme choice and design. Accordingly, we argued that establishment of institutional arrangements to undertake these social change roles should be an item for early implementation, and should not wait for determination and commencement of other roles for the scheme. I repeat that point here. I will pursue it further, both with governments and with the advisory group which is being established.

I turn now to the relationship between the NDIS and the NDS. One of the reasons I am keen for early establishment of what we might call the "social change" division of a National Disability Insurance Agency, is because of the role this could play in driving the implementation of the National Disability Strategy.

It's already seven months since the NDS was endorsed by COAG. The NDS declared a shared vision for an inclusive Australian society that enables people with disability to fulfil their potential as equal citizens. The strategy points to economic, social and human rights imperatives for the achievement of this vision.

Like my organisation, other social policy advocates within and outside government are seeking to link social policy agendas to major economic agendas. But for opportunity and participation for people with disability, this linkage is not just a matter of "they would say that wouldn't they". Rather, it's a linkage made in the highest level advice from the government's professional economic advisers. As well as the Productivity Commission, that includes the Departments of Treasury and Finance, whose briefs to the incoming government after last year's election both stressed equity and participation as essential to enhancing economic performance and potential.

The NDS identified an NDIS as a potential major component of the NDS in two of the six priority areas:

I agree with that of course. But I see a National Disability Insurance Authority as being an important driver for action under the NDS across the board.

The same point applies to a Mental Health Commission, in ensuring that all areas of the NDS address issues for people with psychosocial disability.

These institutions could add immense value, and play critical roles by

Let me stay with communication and partnerships for a moment. In recognition of the significance of the NDS as a framework for the implementation of the Convention, and the recognition of an important role for the Commission within the NDS itself, the Australian Human Rights Commission has framed our own workplan for the foreseeable future around the NDS.

The NDS, of course, requires that disability Ministers, and their departments, co-ordinate development of detailed implementation plans for each of the priority areas identified, and bring these back to COAG early in 2012. The Commission doesn't believe, however, that it's necessary to wait til the NDS implementation plans are finalised next year to start taking action around the NDS.

As noted in the NDS itself, there are already a range of current relevant commitments, and existing initiatives. The Commission is engaged in a number of these, in partnership with relevant Commonwealth agencies, with representatives of people with disability, and with States and Territories and relevant industry bodies.

There are also a range of areas under the Strategy, with clear scope for action, rather than needing to await further agreements at intergovernmental level. With this in mind, we've commenced discussions with a number of Federal ministers, and with their departments, as well as some discussions with States, on specific issues.

To keep people in other areas of government, and in disability community organisations, in touch with what we're doing, and thinking, we've re-commenced our regular "Disability Rights Update" newsletter on the Commission website, together with continuing brief blog entries, and even briefer tweets, on news and developments. Please take a look at the September newsletter if you haven't already. And follow me on twitter at Graemeinnes.

Two recent developments:

Of course communication is a two way street. We set up our disability rights blog last year, with the intent of making communication easier and more effective. It's a bit disappointing that in response to most posts we get offers for fake Viagra, rather than comments or questions on the issues. We will keep trying of course - better communication, not the Viagra! - and I'd welcome your suggestions.

Disability Ministers are due to take detailed implementation plans for the NDS back to COAG early next year. I know there has been a lot of work within and between governments, and I applaud that.

I don't think it's just me, though, that thinks that while titanic endeavours are going on within government to advance disability rights agendas, there are a few too many icebergs around.

I mean, that on many of the actions flagged in the NDS, we are not stuck on the glacier any more, we are heading out to new destinations, and that's exciting: but only one tenth of what is being considered seems to be visible, with the rest going on below the surface.

I was pleased to be included in the initial briefing to disability advisory bodies by the National Disability Strategy Development Officials Working Group last month. We noted the urgency of involving representative organisations of people with disability more directly, and of ensuring improved information flows. So I'm looking forward to more discussion through this Summit of what everyone is doing. Early 2012 is already very close.

The Commission will contribute anything and everything it can to ensure that we get the best results possible out of this stage of development of the NDS, and I'm sure the same is true for everyone else in the sector.

Change in the disability rights climate is one sort of climate change that we really do want to see happen. And it will only keep happening if we humans keep working together to induce that change. So I look forward to continuing to work together.

Thanks for the chance to speak with you today.