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Disability Rights

DIG it at the DisCo: or, Money Changes Everything, but What's Insurance Got To Do With It?

National Disability Summit keynote address, 30 April 2010, Melbourne

Graeme Innes AM, Disability Discrimination Commissioner and Race Discrimination Commissioner

Introduction

I acknowledge the traditional owners of the land on which we meet, and I pay my respects to their elders past and present.

Acknowledgment of where we stand and where we are is, it seems to me, an essential precondition to good decisions about where we want to go, and how we might get there.

The national apology in the Federal Parliament to the Stolen Generations was an acknowledgment that made front pages around Australia.

In the disability world, of course, we are not much used to front pages. A recent and very welcome exception was the tabling in Parliament of Disability Standards for access to premises.

In the spirit of acknowledgment of that achievement, can I pay tribute to the people in this and previous governments, in industry and regulatory bodies and in the disability community who have got the Standards to this point.

These standards, I think, rate as one of the biggest achievements in human rights that the Australian Human Rights Commission has been involved in during its whole existence: in terms of the numbers of people who will benefit into the future, and the level of practical change in social inclusion which will result.

Yes, we can. And yes, we have: together.

But I think it’s clear - including from Parliamentary Secretary Bill Shorten's address yesterday to this Summit - that we have even bigger things ahead of us.

Transforming a whole social order

Last December, when the Prime Minister announced an inquiry by the Productivity Commission into a National Disability Insurance Scheme (or NDIS) or similar options as a key plank of the National Disability Strategy, he referred to Bill Shorten’s description of a NDIS as a “big idea” as “something of an understatement”. He described an NDIS as involving transformative change to the disability services sector, which could help in building a fairer Australia.

At the Australian Human Rights Commission, I and my colleagues as independent statutory officers can and do from time to time take a different view to that of government. So in turn, I can say that I think the Prime Minister may have actually understated the potential transformative effect of a NDIS.

As we have heard in other sessions at this Summit, there are important debates to be had, and hard work to be done, in giving real meaning to concepts of person - centred services and individualised funding. Many of the hard issues about an NDIS are in the details of the possibilities for transforming the availability, adequacy and responsiveness of the disability services sector to ensure that the result really is to enhance independence and freedom and opportunity for individuals.

I’m not going to add much to those aspects of discussion of a NDIS today. There are other people here better placed to do that. The Australian Human Rights Commission has mostly focused its disability work on equality in mainstream services and systems rather than on specific disability services.

So I will be fairly briefly in my contribution about what a rights based framework built on the DisCo would mean to individual entitlements under a NDIS.

The DisCo requires that the rights it recognises be implemented progressively to the maximum of available resources.

Equal enjoyment of human rights sometimes involves making laws, which can happen relatively quickly. But often it involves changing social systems and supports and structures and attitudes - and investing resources over time to make that happen as a strategy for progressive change.

One of the points I want to emphasise about the relationship between human rights and a NDIS as I would want to see it, is that we should not start with the idea of an NDIS as only about access to funding for a limited basket of services. I think it has the potential to be about access to the full range of human rights.

I know there has been some community discussion that an insurance model is too narrow and focuses only on economics.

I’m also aware of fears and criticism that discussion of disability as something to be insured against, risks reinforcing views of disability as a burden and purely an individual misfortune, rather than being about the interaction between impairment and social attitudes, environments and other responses.

But as the disability movement has been saying for decades now, the experience of disability does involve costs falling on individuals and families -  which could be better and more fairly met socially.

I read an article by Al Gore recently where he talked about taking action on climate change both in the “democracy sphere” and the “market sphere”.

Some of our choices we exercise by voting in elections - which are now at last being made accessible for people with disability. Some of our choices we exercise by voting with dollars in the market.

I see the NDIS concept as presenting opportunities for acting in the democracy sphere to create the missing market for comprehensive disability insurance that economists like Jack Frisch have talked about for years.

Yes, this is about money. But those of us who have been around for a while will recall that the DDA itself originated in part with an agenda to reduce the welfare bill - not by cutting entitlements but by facilitating employment participation. This is of course the sort of outcome we are hoping for from the welfare review being conducted by Dr Jeff Harmer -  who 20 years ago was one of the people who made the DDA happen. 

What I mostly want to talk about today are some potential impacts of a social insurance scheme for disability on social and systemic levels.

These are not set positions or finished thoughts. We have ahead of us a public inquiry process - which I am confident the Productivity Commission will conduct with its customary openness to ideas and experience brought in through submissions, and its usual excellence in drawing out recommendations for government.

I am sure that we will all learn a lot – even those of us who have been in disability policy for decades -  as we go through the process.

But I think that the report that we already have from the government’s Disability Investment Group - The way forward: a new disability policy framework for Australia - gives some important directions to pursue both in looking at a NDIS and in developing the broader National Disability Strategy.

I am particularly interested in and excited by possible roles for the DIG’s proposed National Disability Commission (within a NDIS) and National Disability Research Institute (which the DIG recommended should be established and funded in advance of a NDIS but then should be significantly expanded when an NDIS is in place).

Why am I talking about institutions and research and public policy when I was invited to talk about rights and entitlements? Let me try to explain.

Disability is not purely individual and human rights are not purely about individual entitlements

Within the disability movement we have been insisting since the 1980s on a social or environmental model of disability.

Disability, we have emphasised, is not simply a matter of individual impairment which can be summed up or addressed in purely medical terms.

Rather, disability involves interaction between a person’s impairment and social environments, systems, structures and attitudes which are too often disabling and excluding in their effect, instead of being enabling and inclusive.

So, much of the change we have wanted to see is at this systemic and societal level.

I have a favourite quote on human rights, which I use as often as possible. It’s this one, from the French jurist Rene Cassin during the drafting of the international Bill of Rights:

... it would be deceiving the peoples of the world to let them think that a legal provision was all that was required ... when in fact an entire social structure had to be transformed.

One of the many good things about the DisCo is that it does incorporate this understanding of disability, and this understanding of human rights, in setting out an agenda for action, and for translating human rights concepts into realities.

This is why I attach such importance to the commitment by the Prime Minister to develop a truly National Disability Strategy through COAG processes, and through this to address the obligations which Australia has accepted under the DisCo.

Individual entitlements and social change

Since 1993 the Australian Human Rights Commission has been working, using a particular “legal provision”, the DDA, to move towards “transforming an entire social structure”.

We have worked in partnerships with industries and governments and the disability community – through standards development, through exemptions processes and through assisting voluntary actions by industries and enterprises and through dealing with thousands of complaints.

There have been some notable successes:

  • disability access incorporated within the standard telephone service
  • a national strategy for accessible transport
  • captioning levels on TV more than doubled
  • and the access to premises standards showing the way to massive improvements in access into the future.

But there are also many areas where positive change is much harder to find.

  • Despite thousands of employment discrimination complaints, the majority of them successfully resolved by conciliation, overall Australian employment outcomes for people with disability are if anything worse than in 1993.
  • For people with a mental illness or an intellectual or cognitive disability or brain injury in particular, but for people with disability and their families more broadly, many of the most pressing issues either are not dealt with by the DDA or else it has not been easy enough to find effective strategies for change.
  • People continue to live in institutional or quasi institutional environments – and in those categories I include life on the streets or in prison – in circumstances of needlessly wasted potential, and exposure to violence, harassment and abuse. 
  • Even in those areas where there are more positive stories to tell, we have not had clear measures of where we are now and any very clear idea of where we should expect to get to, or of how well the strategies that have been applied to the task of eliminating discrimination are going in achieving their objectives and thus where we might need to focus more resources and refine our approaches.

People with disability deserve better from Australian society and its governments - including the human rights system.

And just last week the Attorney-General announced a review to look at ways that Australia’s discrimination laws might be made more effective and efficient.

The review of federal discrimination law offers opportunities to get the best out of complaint and legal processes - among other compliance mechanisms such as improved procedures for development of codes and standards.

There are issues in particular about legal standing  - who can complain and who can take proceedings in court; should this be restricted to persons aggrieved,  or should organisations, perhaps including the Commission itself, have the ability to go to court too if necessary.

To quote Clint Eastwood: “ A man alone is easy prey”.

But a person whose cause is represented by an organisation, or a statutory authority -  or perhaps an insurer with an interest in favourable and efficient resolution of the matter?  – is not a man, or woman, alone anymore.

I’ll come back to the point about the connection between social insurance and implementation of disability discrimination law.

But even the best administration of the best anti-discrimination law or human rights law, or law of whatever sort is not the whole answer.

It is always useful for lawyers in particular to remind ourselves of another Clint Eastwood quote: "A man's got to know his limitations."

Lawyers see ourselves as essential agents of access to justice. Economists and insurers are more likely to file lawyers in the folder marked “transaction costs”.

So while the DisCo does require legislation against discrimination it goes much further than this.

Full and equal enjoyment of human rights across the board and in all areas of life is called for.

Parties undertake to adopt all appropriate measures for the implementation of the rights recognized and for the removal of discrimination.

There are also some more specific obligations.

There are obligations  to promote research, development and availability at the least cost of enabling technologies, assistive devices, universally designed goods, services, equipment and facilities and to promote universal design in standards and guidelines.

There are obligations to adopt “immediate, effective and appropriate measures” to raise awareness throughout society regarding disability and foster respect for the rights and dignity of persons with disabilities; to combat stereotypes, prejudices and harmful practices relating to persons with disabilities, and to promote awareness of the capabilities and contributions of persons with disabilities.

This of course reflects an understanding that disability is a social not a purely individual phenomenon and that disabling attitudes are a major part of what turns impairment into disability.

Similarly the obligations in DisCo about accessibility and universal design and enabling use of technologies and human assistance are not restricted to equipment and services designed only or specifically for people with disability. There are wide ranging obligations to promote physical, information and communications access in all facilities, services and places open or available to the public.

Finally, there are a range of procedural obligations in DisCo to ensure that all these things are actually happening.

Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the Convention.

They undertake to compile and publish regular reports on progress in implementation.

They undertake to put in place frameworks for co-ordination of implementation and for monitoring.

What’s insurance got to do with it?

O.K. But as Tina Turner so nearly said, what’s insurance got to do with it?

I confess that until a few months ago I thought, not all that much.

I thought that, although an NDIS had huge potential to transform adequacy and access to specific disability services and supports, it did not have much direct relevance to other aspects of access and opportunity. That it would be an important but specific component of a National Disability Strategy, rather than being one of the major drivers and source of cross cutting strategies for change across the board .

Of course I did get the point that better access to individual disability supports and services would have important impacts on access and opportunity in mainstream systems. Whether people can get out of bed in the morning and whether they can afford a taxi to get to work are pretty big determinants of equal employment opportunity for example.

Discrimination laws do talk about reasonable adjustments in employment and education, but better funding streams could make a big difference to how far and how well and how quickly and reliably reasonable adjustments actually happen in practice.

But still, I was thinking an NDIS could only have limited impacts beyond specific disability services and supports, and that most of the work would need to be done through other components of the National Disability Strategy.

After all, an individual with money in her pocket thanks to an NDIS can buy an accessible taxi trip, but can’t buy an accessible railway system. Disability insurance can assist with workplace or home modifications, but can’t buy national standards for access to premises or universal housing design.

Right? Well, no.

There is 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 DisCo.

Sometimes they do these other things purely because it is in their economic interest to do so, to minimise the amount of paying out to individuals they have to do.

An authority or authorities responsible for a national disability insurance scheme would clearly have an interest in keeping the costs of the scheme down.  

Of course there are potentially problematic issues arising from this in terms of adequacy and reach of the support to be provided, which the Productivity Commission inquiry will need to address.

But the incentive for insurers to minimise costs also includes a clear incentive to reduce the social and environmental causes of the harm insured against.

For example: Fire insurance companies led the development of fire brigades in England and the drafting of building code provisions for fire prevention in the United States.

They recognised that insurers could and did have an economic interest in changing regulatory and physical environments and bringing into being social systems and services which no individual could have bought for themselves.

Sometimes that economic interest for insurers is reinforced by statutory charters. I am thinking here of bodies like Transport Accident Commissions or WorkCover authorities. Victoria’s Transport Accident Commission for example has produced an internationally famous series of road safety advertisements over the past 20 years promoting awareness of and attitudinal change towards safety issues.

Either way, 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 change
  • Research 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..

I want to talk for a minute about that last point about insurers as advocates.

As some of you may know, insurance law includes a principle called subrogation. If I incur a loss covered by insurance, the insurer pays me to compensate that loss. In return, the insurer often gets the right to stand in my shoes to pursue whatever remedies I might have against persons responsible for that loss.

I’d be very interested to have some discussion on how this or a similar approach might work in connecting a national disability insurance scheme with disability discrimination law.

Instead of individuals or families deciding whether to risk incurring court costs, perhaps risking their houses, and deciding that they cannot afford the risk, you could have insurers doing what it’s their business to do: managing risk; and making decisions about whether to pursue a matter purely on the basis of its merits and prospects of success - and having the resources for all the legal firepower required if it does come to litigation.

Of course this in turn might often help in getting other parties to the table to negotiate solutions.

With or without formal involvement in anti-discrimination cases, I would expect insurers to focus considerable effort on preventing discrimination happening in the first place and thus reducing the costs of disability to individuals, to the insurers and to Australian society.

Workplace and other compensation and safety authorities commonly have dual functions of insurance and compensation on the one hand and prevention, awareness and regulatory roles on the other, as a means of reducing incidents which lead to insurance costs, .as well as functions in funding workplace and other adjustments.

I have seen some sceptical reactions to the mention of “prevention” of disability in the terms of reference for the NDIS inquiry. I think that it will be important for people and organisations in the field to engage constructively on this issue to emphasise that prevention of disability does not only mean prevention of impairment.

We need to ensure that in this and other respects the Productivity Commission inquiry and responses to it do encompass a social model of disability. Understood this way, prevention also includes prevention of disablement by inaccessible environments and systems, lack of supports and services, and disabling attitudes.

Let's take an example.

Access Economics estimated in 2006 that productivity costs of lower employment rates for people who are deaf or have a hearing impairment in Australia amounted to $6.7 billion annually even before costs of administering resulting welfare payments were taken into account. Is anything like that amount of money being spent to improve participation and opportunity in employment and education for deaf people and people with hearing impairments? Of course not, because without a national social insurance scheme or something similar this is not anyone’s responsibility. Access Economics estimated there was about $191 million being spent on education and support services, about $378 million on hearing aids,  and another $287 million on health system expenditures – so about $676 million in total being spent compared to a potential $6.7 billion.

There would clearly be an interest for a national disability insurance authority in measures to reduce preventable hearing impairment. But there would also be a clear interest in measures to prevent or reduce economic and social disability for people who do have hearing impairments or are deaf. Yes, things like easy and affordable access to assistive devices - but also things like promotion of accessible communications and information and other accommodations in education, employment and other areas of economic and social life, through research and technical development, through development of standards, and through funding or conduct of advocacy for these results.

It’s striking that the Access Economics research was conducted by a private consulting firm on behalf of a disability organisation: not by any public authority.

As I have mentioned, the DisCo does now provide obligations to conduct research and collect data on disability. And the costs of this sort of research look like very small change compared to the costs that could be saved for the community and for people with disability and their families.

Again, that’s not only about impairment but about disability in its wider sense - including whether environments and systems are disabling or enabling and how far we might be moving forward.

For a national disability insurance authority or similar body this sort of research would be bread and butter stuff. The report of the government’s Disability Investment Group makes the same point, saying:

A key plank of insurance-type schemes like this is the collection and analysis of data to help manage scheme liabilities.

The DIG pointed out that at present

Governments in Australia spend over $25 billion on disability each year. Yet there is virtually no investment in disability-related research.

Alongside its recommendation for work towards an NDIS, the DIG made a recommendation for a substantially funded disability research centre. The DIG presented this as an early initiative to take whether or not there is an NDIS, but with an NDIS then providing scope for further expansion and sustainability.

Anyone involved in disability I am sure could think instantly of dozens of issues where such an institution could make a big difference.

Think back for example to the development of the Disability Standards for Access to Premises. In the United States this sort of work is conducted by a substantial federal agency, the Access Board. In Australia by contrast we basically have Michael Small (plus the largely unpaid input of experts from the disability community and voluntary input from industry). .

It seems very likely to me that there are large scale savings to be had through greater investment in work that makes it easier to construct an accessible and inclusive Australia.

For example I’d expect that the whole cost of developing codes or standards for adaptable housing could be recouped through the savings achieved in modifying just a handful of houses out of the millions out there.

I’d like to quote a few more lines from the DIG report:

… more investment is needed in research directly related to the lives of people with disability. The research can then be translated into evidence-based policy and best practice. This new research effort should cover the broadest practical range and encompass policy-relevant social research, practice research, engineering and technology, and medical research.

There is potential for strong partnerships with non-profit disability service providers, the corporate sector through its corporate community investments, between researchers and industry, and with the philanthropic sector to ensure the commercial application of innovative ideas.

The DIG recommends the establishment of a National Disability Research Institute as a centre of excellence for disability research in Australia … Funding for the centre could come from a NDIS if that model is adopted. In the meantime, the centre could be set up with a contribution from the Commonwealth and State and Territory Governments as part of the National Disability Agreement.

To me these are some of the most important human rights recommendations made about disability in Australia.

Conclusion: DIG in and DisCo down

The disability sector will have a great range of experience and expertise to contribute to the Productivity Commission’s inquiry on a NDIS. I would urge everyone in the disability sector to work to ensure that those views do get contributed. Yes, this is about money: but it’s not one just to leave to the actuaries and the chartered accountants.

An NDIS and the accompanying institutions which the DIG recommended can I think enable us to chart a course to equality and freedom for people with disability in Australia. You might say, an NDIS could enable people with disability and their families to charter their human rights – and sail with them to lives and futures of their own choosing.

The DIG report gives me great confidence that an NDIS can have the roles I have been talking about, as one of the major enabling mechanisms within the NDS for the realisation of human rights for people with disability.

I came to these views first by looking at the obligations provided in the DisCo and then reflecting on what roles insurance and insurers can play. The DIG report starts from the other end.  So you can go to the DisCo and find something to DIG, or find something you DIG and then realise that it’s DisCo. Either way, that’s the way I like it.