Introduction
I want to acknowledge the Traditional Owners of the land on which we are gathered, the Gadigal people of the Eora Nation, and pay my respects to their Elders, past, present, and emerging.
I also want to acknowledge any other Elders who are with us today.
And I want to thank National Disability Services for inviting me to deliver the Kenneth Jenkins Oration. I am honoured and delighted to be here. To be amongst friends, allies, and fellow reformers.
Earlier this afternoon, Lisa Paul and I had the opportunity to have a conversation with you about the Independent Review of the NDIS – and I would like to thank you for engaging with us so openly and deeply.
Your advice and insights will help to inform the Review immensely.
With that in mind, I would like to have a different conversation in which I cast my net wider than the here and now – and frame the challenges and opportunities we face in the broadest possible terms.
I want to paint a bigger picture – to go back in time to explain how we came to be where we are right now.
And I want to leap ahead – beyond the 12-month remit of the Independent Panel – to the vital work that will need to continue once the Review is completed …
.. and the collective responsibility that we all share to maximise the benefits of the NDIS for Australians with disability, for the broader society, the economy and future generations.
I want to – in other words – focus on the question of perspective.
'The Loss of Perspective'
But, first, I need to make a confession: I did not know Kenneth Jenkins.
I regret to say that I never met him.
In one way, it's no surprise that our paths never crossed. Kenneth Jenkins retired in 1981 – meaning that his decades of work in disability services ended before mine even began in 1985, when I discovered that my oldest son, who was then aged one, had been born with cerebral palsy.
But I regret that we never met.
I regret not meeting Kenneth Jenkins because I could and would have learned from his experiences – and the perspective gained from those experiences.
That's one of the problems with the fast-forward lives we now live: the loss of perspective.
Too often, we're moving so fast, so focused on what's next, so trapped like goldfish in the fishbowl of the perpetual present and the imminent future, that we forget to learn about those who went before us.
We don't take the time to understand their failures and successes, to know their stories, to benefit from their hard-won experiences.
And – as a consequence of this social amnesia – we run the risk of repeating the mistakes that define our past, instead of making opportunities that define our future.
Take, for example, the year of Kenneth Jenkins' retirement: 1981.
That year was a turning point for disability activism in this country. But do we remember, celebrate and learn from the achievements of that generation of Australians?
Of course not.
But we should remember.
We should, because 1981 was the United Nations' International Year of Disabled Persons.
We should, because 1981 was a turning point for Australians with disability – because, for the first time, they had the resources to come together and campaign collectively for a fair go.
We should, because 1981 was the year that the Victorian Union of Intellectually Disadvantaged Citizens – the forerunner of Reinforce – was formed and presented a Code of Rights to the then-Minister for Social Services, Fred Chaney.
We should, because 1981 was the year the late Lesley Hall – former CEO of the Australian Federation of Disability Organisations – stormed the stage at the St Kilda Town Hall to protest the Miss Australia Quest.
Lesley was protesting the inherent contradiction of that beauty pageant: that the Miss Australia Quest raised money for children with cerebral palsy but objectified physical perfection and excluded people with disability.
It was a radical and iconic moment – and a radical and iconic time.
Of course, disability activism pre-dated 1981.
In 1979, for instance, a so-called 'wheelchair brigade' from the Australian Quadriplegic Association, led by the late Joan Hume, disrupted the opening of an inaccessible railway at Bondi Junction – and embarrassed then-Premier Neville Wran into introducing wheelchair-accessible taxis.
The first recorded disability protest was also staged here in Sydney in 1971.
That protest was led by the late John Roarty at the Weelwa institution in Ryde.
Weelwa was run like a prison and Roarty – a man with cerebral palsy who went on to co-found People With Disability Australia – and his fellow residents were literally fighting for their freedom.
And – after campaigning for two years – they won.
Why – you might ask – am I talking about Kenneth Jenkins and John Roarty and Joan Hume and Lesley Hall?
And what on earth does the past have to do with the Independent Review of the NDIS?
Let me answer those two questions in two ways: discursively and succinctly.
'Another Word for Wisdom'
My discursive answer first.
As you know, I was the inaugural Chair of the National Disability Insurance Agency.
I was there – together with many people in this room – in 2008 when service providers, families and carers, and people with disability came together to create what became the Every Australian Counts campaign – a movement that echoed the ambitions of 1981.
However, while echoing the ambitions of 1981, it was also a signature moment with a very significant difference.
Every Australian Counts was auspiced by the National Disability and Carer Alliance, which brought people with disability, families, carers and service providers together in a world-first alliance after the schisms and balkanisation of the 1980s.
Organisationally, this Alliance remains unique, globally, more than a decade later. It is also unique in its achievements.
For instance, when the Alliance started Lesley Hall was in the room representing people with disability.
I was there in my personal capacity, but also as the then-Chair of Yooralla.
Why is that significant?
This is why.
When Lesley stormed the stage to protest the Miss Australia Quest the organisation she was fighting was Yooralla.
That's right. The Quest was raising money for Yooralla.
That's some history. But Lesley and I put it aside and worked together for a common cause.
And if we could build bridges, if we could build mutual respect and trust, if we could create a united front, anyone could. And, more to the point, everyone should.
I was also there when the Gillard Government committed to the NDIS in 2011, and again in 2013 when Julia Gillard as Prime Minster introduced the NDIS Act in the House of Representatives.
I was there when the NDIS commenced operations on 1 July, 2013.
I was there every step of the way.
And then – when my term as Chair of the NDIA ended in 2016 – while proud that the NDIS had been delivered on time, on budget and with high-client satisfaction, I was not there.
I was no longer part of the largest socio-economic initiative since the establishment of Medicare in 1984 and the legislation of the Superannuation Guarantee in 1992.
But that did not mean I stopped thinking about disability issues.
To the contrary, thanks to the foresight of the then-Vice Chancellor of the University of Melbourne, Glyn Davis, I was given the opportunity to establish and become Director of the Melbourne Disability Institute.
As a result, I've had the opportunity to spend the past six years thinking more than ever about disability issues in general, and the NDIS in particular.
Most importantly, my role at MDI has enabled me to gain new perspectives, to learn more about research and data and to engage with researchers without the day-to-day challenges of implementing the NDIS.
I have learnt an enormous amount and so I would like to take the opportunity provided by this Oration to publicly express my gratitude to Glyn, to Professor Jim McCluskey, Deputy Vice Chancellor Research, and to Duncan Maskell who is now the Vice Chancellor of the University of Melbourne.
My role at MDI has also provided a platform from which I have been able to contribute to reform in ways I did not anticipate when I went to the University.
The change I am most proud of is the role MDI played in partnership with the Australian Network for Universal Housing Design, the Summer Foundation, and more than 100 other organisations and their members, through the Building Better Homes campaign, to introduce mandatory-accessible standards for new housing.
This achievement builds on decades of tireless work, particularly by the Australian Network for Universal Housing Design.
At the same time, it remains incomplete, as New South Wales and Western Australia are yet to implement these changes, despite the strong evidence that the benefits of accessible housing far exceed the costs.
So, these changes to the National Construction Code, which will benefit all Australians, is another example of what can be achieved when we build on the work of those who came before us.
Like Every Australian Counts, it also demonstrates that unity and evidence are essential preconditions for reform.
All of which now brings me to the succinct answer to the question of why I am speaking so much about the past:
Perspective.
If we want to make the most of the opportunity that is the Independent Review of the NDIS, if we want to maximise the social and economic benefits of the NDIS, if we want to harness the potential of people with disability and their families, if we want to create jobs and boost productivity, if we want a truly inclusive society, if we want to make the great Australian fair accessible to all, if we want all that – and more – we need to address the question of perspective.
We need to know where we come from as a people – our struggles and stories.
We need to know exactly where we stand and what's at stake – the facts and the figures.
We need to know what we want – our rights and responsibilities.
And we can't sustain that kind of purpose without historic, economic, and political perspectives.
Put it this way: the perspective I'm talking about and the one I believe needs to be applied in the Independent Review is another word for all the facts and figures and evidence we will assemble, and this word is wisdom.
We need to be wise.
And we need to be united.
United not in opposition to change, but united in our quest for further deep reform and progress.
'From Outside to Inside'
I've touched on the historic perspective.
Let me read you some recent quotations that go to the current economic and political perspective.
This is Treasurer Jim Chalmers speaking recently on Insiders:
'We need to work out how do we maintain a focus on Australians with a disability and their families? How do we put them front and centre and at the same time, make sure that spending on the NDIS is sustainable? An important part of that is making sure that we get value for money for every dollar that we spend.'
This is a quote from a recent editorial in the Daily Telegraph:
'It is important that the review into the NDIS operation is coming from a position of retaining and improving the scheme, rather than how it could be rewound with minimal disruption.'
This is a quote from a recent opinion piece by Peta Credlin, the former Chief of Staff to then-Prime Minister Tony Abbott:
'An NDIS that remains out-of-control would be a good idea gone badly wrong. To make it sustainable, both sides of politics, and all levels of government, must work together.'
And this is from a recent speech by the Minister for the NDIS, Bill Shorten:
'Look at the ledger, the balance sheet of the NDIS, and there's more on the plus side than the negative side, there's more on the credit than the debit. It is changing lives for the better.
'You know the truth of the matter is that the word – NDIS … It didn't really exist 12 years ago.
'We created something. But it needs to do better.'
These quotations – which I've taken almost at random – reveal something important: the disability sector has established itself beyond the wildest dreams of the activists of the 1970s and 1980s.
This shift in the tectonic plates that define our society was brought home to me in the lead up to the Federal Election in May.
On election eve, Tom Burton – who writes the Inside Government column for the Australian Financial Review – described NDIS participants and their families and carers as 'a potent political force'.
A potent political force.
This was a remarkable characterisation from a newspaper that usually only recognises the power of business – and what it demonstrates is the fact that the disability community is more powerful than it realises.
Far more powerful.
In less than a generation, disability – as a function of Government, as a political portfolio, as a subject of media attention and as a political force – has gone from outside to inside the political tent.
Remember, when the 2020 Summit was held in 2008, not one representative of the disability sector was even invited to Canberra.
Helen Sykes and I, with the help of our colleague and friend John Nairn, had to smuggle our submission for what became the NDIS into the 2020 Summit.
And, now, 14 years later,
- The NDIS has its own Cabinet Minister;
- The sustainability of the NDIS is front-of-mind for the Treasurer;
- Across the spectrum – the media is discussing how to retain and secure the NDIS;
- The NDIS, as a 'word', has become, as Bill Shorten put it, part of our national vocabulary;
- And the fact that we will spend the next 12 months looking for ways to improve the NDIS is front-page news.
The NDIS – and by extension the disability sector – is core business for the Commonwealth.
It's easy to see why the NDIS has taken disability from outside to inside the tent – and entered the national vocabulary.
After all, the Scheme now has more than 554,000 participants.
Disability, along with aged care, is the largest and fastest growing part of the workforce.
And, as Minister Shorten rightly points out, the NDIS is changing hundreds of thousands of lives for the better.
In other words, the NDIS has become embedded in the community and the economy – and is, overwhelmingly, a force for social and economic progress.
However, for the record, that does not mean the NDIS is perfect.
As Minister Shorten has said, 'It needs to do better' – that is why he established the Independent Panel.
But – and this point is important – the disability sector now needs to shake off its outsider thinking.
Yes, people with disability are still grossly disadvantaged – more likely to live in poverty, more likely to be abused, more likely to die before their time – …
.. but the disability sector is now a part of the economic and political mainstream and we need to think and act accordingly, because it is people with disability, their families and carers who have the biggest interest in the sustainability of the NDIS.
That is why we need to take responsibility for the efficiency and operations and measurable improvement of the NDIS, as well as advocating for the delivery of accessible services for people with disability.
And – unless we want disability issues to be defined by those outside the disability community – that is why we need our actions to be informed by an historic, social and economic perspective.
After all, if we lose track of where we have come from, we will lose track of where we need to go.
That is why we need a renewed perspective for the disability sector.
And that is what the Independent Panel is seeking – a renewed perspective and a renewed spirit of engagement, co-design and unity.
'The Spirit of 2011'
What do I mean by renewed perspective and a renewed spirit of engagement, co-design and unity?
I've spoken at length about the spirit of 1981.
But what has happened over the past decade is that we have drifted away from the spirit of 2011.
We have drifted away from the grassroots, community-driven, people-first perspective that drove the Every Australian Counts campaign and informed the establishment of the NDIS.
We have drifted away from co-design.
We have drifted away from people with disability, their families, carers and disability service providers not only designing their future but also shaping Australia and its lived values.
And we have drifted away from the principles of putting people with disability and their families at the centre of the NDIS – and from ensuring that mainstream services are universal services.
That is why services and service systems that were supposed to be seamless have become a labyrinth or, in some cases, disappeared.
My point?
The commitment every government in every jurisdiction made to work towards an inclusive society that enables people with disability to fulfill their potential as equal citizens has not been delivered.
As a result of this failure the NDIS has become the equivalent of the only oasis in the desert or the only lifeboat in the ocean.
These failures must be fixed.
This point is fundamental because the NDIS was not designed to be a segregated silo for all the services that people with disability need.
The NDIS was not designed to support the needs of all Australians with a disability.
There must be adequate disability supports for those people with disability not eligible for the NDIS.
The NDIS was designed to be part of an accessible ecosystem of universal federal, state and local services.
That is why the Commonwealth and State governments established Applied Principles that spelt out who was responsible for what both in the NDIS and in other service systems used by people with disability.
All of which leads me to this question:
Was it correct to try and draw hard boundaries between the NDIS and other service systems?
The reason I ask that question is because – in re-reading the Principles – COAG appears to have been more focused on the negatives – costs and cost shifting – than the positives – enabling and empowering people with disability.
Is that also why the NDIS has become more concerned about the needs of the system than the needs of the people it is supposed to serve?
I'm not sure whether that negative focus is the cause of the negative outcomes we are seeing, but I do know this: we must challenge our ways of thinking both in the Review and beyond.
We must come out of the review process with a renewed perspective that is all about making the systems that people with disability need for good lives are their servants – rather than the other way around.
'Adopt a Netflix Perspective'
Let me explain what I mean about making the system the servant of the individual.
As I said, disability services are not seamless.
In a nutshell, they are too bureaucratic to access and too complicated to navigate.
In fact, from a system-design perspective they seem almost designed to confound.
This byzantine approach would be problematic outside the disability sector.
Within the disability sector it is even more problematic – especially when you consider the fact that a high proportion of NDIS participants have an intellectual disability.
This needless complexity has created barriers to access that many people with disability will not be able to overcome on their own.
It has become a source of inequity and must change.
We must rethink the user experience – and at least have the ambition to make it as easy to navigate the NDIS as it is to stream a movie on Netflix.
I know, comparing the NDIS to Netflix is simplistic, but the point I'm trying to illustrate is important.
My point is that the NDIS is needlessly complex.
Let me be clear on this: I'm not talking about the back-of-house workings of the NDIS. I'm talking about the user interface.
Internally, the NDIS is and will always be a complex operation.
But there is no need for the external parts of the NDIS – the parts participants use – to be equally complex.
After all, the technologies behind services like Netflix or devices like the iPhone are complex, but their user interfaces are very simple.
Why can't the NDIS apply the same consumer-friendly logic?
Why can't the user interface for the NDIS at least strive to be as intuitive as an iPhone?
Why can't we adopt a Netflix perspective and take the complexity out of the user experience?
Why can't we do better?
'Open Source Mentality'
Here is another example.
I said we should take the complexity out of the user experience.
That doesn't mean we should ignore the complexities of the NDIS or the multiple needs of NDIS participants and their families.
To the contrary, the NDIS needs to fully embrace the complexity of disability but then delve into this complexity by generating insights based on the wealth of the Big Data the NDIS is creating.
We wanted to, as the statistician Nate Silver says, 'stop and smell the data' … and analyse the benefits as well as the costs of the Scheme – and identify longitudinal trends and emerging best practices.
After all, Big Data doesn't just tell us about what happened yesterday.
It can also tell us what is probably going to happen tomorrow – and that kind of insight is vital for an insurance scheme looking to make life-long investments.
That was the intention. But the reality has fallen short of that ideal.
The reason why the NDIS has fallen short of that ideal, in my view, comes back to perspective.
We are not using data to innovate – to, as Nate Silver puts it, find signals in the noise.
We are not making the NDIS data widely available for research.
This failure to maximise the use of data is a golden opportunity which is being missed – and I believe we can do better.
For example, last year, MDI was commissioned by the Commonwealth and Victorian Governments to examine NDIS plan utilisation and to see how equal this was across different groups which we thought could be disadvantaged.
The groups we looked at were Aboriginal and Torres Strait Islander participants, Culturally and Linguistically Diverse participants and participants from lower socio-economic groups.
A key part of this research was to ensure that our comparisons were accurate and so on a like-for-like basis. We therefore adjusted the comparisons to make sure that we corrected for differences in age, severity, disability type and Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL).
These adjustments are essential when using NDIS data to make comparisons because, for example, younger participants typically have smaller plans while those with SDA and SIL have larger plans. To ignore these factors would have meant that our comparisons were biased.
We found that, contrary to previous perceptions, Aboriginal and Torres Strait Islander Participants and those from Culturally and Linguistically Diverse backgrounds received higher plans, suggesting that the planning process was seeking to adjust for these disadvantage.
We also found that participants from lower socio-economic groups received similar or slightly smaller plans, rather than much smaller plans that had been hitherto suggested.
All of this demonstrated that the planning processes were resulting in more equal outcomes than previously suggested and so contradicted one of the major arguments for Independent Assessments.
However, utilisation of plans and, hence spending was much lower for those from lower socio-economic groups and also for Aboriginal and Torres Strait Islander participants pointing to market demand and supply being the major source of inequity rather than planning.
This was backed up by some causal analysis we did at the same time suggesting that more support coordination could reduce inequalities and some insights from qualitative research in Victoria.
These examples highlight the central importance of independent research as a foundation on which NDIS improvements should be built.
It's in the national interest to ensure that these kinds of questions – together with the many other questions generated by the NDIS data – can now be fully explored.
And the best way to find those answers is for there to be an open-source mentality when it comes to data.
Building the Evidence
The good news is that building blocks are being developed to complement the NDIS, and help Australia become a world-leader in disability research, analysis, and policy.
For example, over the past three years, people with disability and colleagues from other universities have been working with MDI to establish a National Disability Research Partnership (NDRP).
The Commonwealth Government has committed $15 million to NDRP over the next two-and-a-half years, as part of its recent election commitments.
NDRP will provide a new source of research funding directed to improving disability policy and practice.
The principles underpinning NDRP will ensure that the research it commissions will be by, with, and led by people with disability.
As a consequence, the research agenda will reflect the priorities of people with disability, as well as families, carers and service providers.
In addition, the Commonwealth has agreed to establish a National Disability Data Asset.
That National Disability Data Asset will bring together NDIS, social security, tax, employment, medical, health, education, justice, and housing data.
It will be an extraordinary platform for research on how our systems do, or do not, serve people with disability and their families.
The initial establishment work to design the NDDA was completed last year.
That work included governance mechanisms designed to ensure that the data is only used in ways which serve the needs of people with disability.
It's been an honour to have been involved in the development of this essential piece of social infrastructure.
More recently, I have had the privilege of working with the Achieve Foundation to help make the business case for philanthropy to make a greater investment in disability and, more broadly, to apply a disability lens when investing for impact.
This business case is essential because, when you analyse giving in Australia, disability is significantly under-represented.
We cannot expect government to do everything in the disability space, just as we do not expect governments to fund all medical research or to fully fund the arts.
And disability needs the excellence quotient and social risk capital only philanthropy can deliver.
The time is, therefore, right to seize new opportunities and put those resources to work because:
- New efficiencies can and must be found;
- New opportunities can and must be identified;
- And, most importantly, better outcomes for people with disabilities can and must be delivered.
Conclusion
In conclusion, let me come back to Kenneth Jenkins.
In 1981, on the day he retired, Kenneth Jenkins gave a speech to the people he worked with and for.
And, in that speech, he said these words:
'Thank you for what you are, for what you have been, and for what you will become.'
Those words resonate with me.
They resonate because they reflect the generational nature of progress – how each generation depends on the progressive endeavours of their forebears.
Many people of the generations of 1981 and 2011 are sadly no longer with us, but the disability movement would not have become what it has become without all that they were and all that they did.
So, next week, when you celebrate International Day of People with Disability please remember those who have gone before us.
After all, the NDIS was built on their shoulders.
John Roarty fought against institutionalisation.
Joan Hume stood up to a Premier.
Lesley Hall stormed the stage – then built a bridge.
The thousands of everyday Australians who joined the Every Australian Counts campaign – and, in the process, took the NDIS from the ultimate outsider idea to the heart of the Commonwealth of Australia – were following in the footsteps of those pioneers …
.. and creating their own progressive legacy.
Many of the people in this room and the organisations you represent are a part of that legacy.
For this, I thank you.
But the question for us all now is this: what are we prepared to do to secure the full legacy of the NDIS?
Because the future of the legacy will not be secured by Bill Shorten or the new Chair and CEO of the NDIA or the work of the Independent Panel.
The future of the NDIS depends on every part of the disability community – service providers, people with disability, families, carers, and researchers – coming together in a new grand and united coalition which uses data and evidence to create a brighter and better future ...
.. and embed the NDIS in civic society.
We must recreate the spirit of 2011 and become a united force for change.
That is the challenge that we must meet through the work of the Independent Review and thereafter, when its work is complete.
Not a day can be wasted, because only then will the NDIS take its place as a world leader.
Only then will the NDIS stand always ready to serve future Australian generations.
Only then will the NDIS become a light on the hill for people with disability and their families, world-wide.
That is the opportunity, which must be seized, today.
Thank you.