Speech: Disability Reform is All About the Power of "And"

Posted on 7 September 2015

Speech details

Disability Reform is All About the Power of "And"
Sixth International Carers Conference, Gothenburg, Sweden
5 September 2015

Introduction

Ladies and gentlemen, good morning. It is a great pleasure and privilege to be here.

Twenty-six months ago, on 1 July 2013, Australia’s largest social and economic reform since the introduction of universal medical and health insurance in the 1970s was launched.

This landmark social and economic reform is the National Disability Insurance Scheme – or NDIS – which our Prime Minister, the Hon. Tony Abbott, referred to during his video message.

The aim of the NDIS is simple … and profound:

To provide all Australians who acquire a permanent and significant disability before the age of 65 with the reasonable and necessary supports they need to live a life of inclusion.

In his message, Mr Abbott called carers the ‘unsung heroes’ of society.

In Australia, carers were also unsung heroes of the grassroots campaign that made the NDIS not just possible, but inevitable.

Unity has been the driving force of the NDIS – from its genesis to its rollout.

That’s because our cause united people with a disability and families and carers and service providers and, ultimately, the Australian community.

It is an honour to represent the interests of so many people today. And a responsibility.

A responsibility because I not only have oversight of the governance of the NDIS as Chairman of the National Disability Insurance Agency – I also have a personal interest as a carer.

My wife, Rae, and I have three sons.

Our boys are no longer boys. They are all adults. All men.

But they weren’t given the same start in life.

You see, two of my sons have cerebral palsy.

Now, Rae and I love our sons equally.

Consequently, we have the same aspirations for all of our young men.

But we know the world does not treat our sons and their friends with disability equally.

We have seen the ways in which people with a disability and their families can be shut out of mainstream life – and the ways in which those barriers can be overcome.

And that’s why I’m here today.

I’m here because of the private responsibility I have to my family – and the public responsibility I have to the countless other families like mine in Australia and around the world.

I’m here because I know all-too-well the great fear that the carers and families of a person with a disability have … the What if? questions.

What if … I can no longer care for the person I love?

What if … I die?

What then?

And I believe that the story of the NDIS – is the answer to that and many other questions, including the four key questions which are being debated at this conference.

Let me explain.

‘On Time and On Budget’

The rollout of the NDIS is a monumental undertaking.

It will lead to a complete restructuring of Australia’s disability sector.

It represents a doubling of spending on disability by Australian governments from 0.5% of GDP to 1%.

And it is being funded through an increase in the surcharge that Australians pay for medical and health insurance, the Medicare levy, and general revenue.

In the two years since the Scheme’s operations commenced 19,817 participants have become eligible for the Scheme. This is in line with expectations.

The rollout of the Scheme is, therefore, on time.

Of these participants, 17,303 had approved plans at a total cost of $953 million. This was consistent with the original cost estimates.

The Scheme is, therefore, on budget.

And, most importantly, client satisfaction is remarkably high at over 90%.

The Scheme is scheduled to be fully operational by 2020.

In 2020, the NDIS will have around 460,000 participants, out of a total Australian population of around 24 million people.

It will then be national and the benefits will be portable no matter where a person lives in Australia.

As I said at the start, the Scheme’s clients will include all those Australians who are born with or acquire a disability before the age of 65 and whose disability is permanent and which significantly affects their functional capacity.

The age cut off of 65 reflects the fact that the NDIS is an insurance scheme.

The disabilities that most of us will acquire as we get old are almost inevitable and therefore are not insurable risks.

You can save to cover these costs and assist with caring, but you cannot insure against them.

The NDIS includes people with intellectual, physical, sensory and psychosocial disabilities, as well as early intervention services, especially for children.

The Scheme seeks to maximise independence and social and economic participation and all participants receive reasonable and necessary supports based on their needs.

Most importantly, the NDIS is controlled by the individual with a disability and their family. They have the power.

The Scheme therefore embraces the shift to consumer directed supports that have emerged in a number of countries.

In this trial phase, we are continuously monitoring the Scheme to compare experience or actual results with the forecasts – and thereby identify improvements, as well as deviations from expectations.

We are learning and building, building and learning.

We are also taking a lifetime approach.

Our aim is to maximise opportunities and minimise the costs of supporting a participant over their lifetime, rather than seeking to minimise costs in the short term.

This long term investment approach is also of great benefit to carers as it minimises unnecessary reliance on them. The NDIS therefore invests in sustainable care, balancing individual, family and government responsibilities.

The NDIS also sees early intervention, equipment and technology as investments and we believe the purchasing power of the NDIS market will drive innovation and so contribute to Scheme sustainability.

For instance, some leading global technology companies—Apple, Microsoft and Google—are considering incubating accessibility ideas in Australia as a direct result of the NDIS.

We are looking to create an e-market that helps participants become informed consumers.

We are also building an outcomes framework to measure the medium and long-term benefits of the NDIS for participants and their families.

Those outcomes for families and carers cover five domains. They are:

  • Families and carers have the support they need to care.
  • Families and carers know their rights and advocate effectively for the person they are caring for.
  • Families and carers are able to gain access to services, programs and activities in their communities.
  • Families and carers have succession plans.
  • Families and carers enjoy good health and well-being.

For people with disability the key outcomes are choice and control, independent living, relationships, health and well-being, home, lifelong learning, work and social, community and civic participation, including volunteering. Achievement of these goals will benefit families and carers, too, as they lead to greater independence and participation.

Monitoring the outcomes across these domains, as well as the financial metrics, will help us ensure the Scheme is sustainable and an economic reform.

The NDIS is therefore a radical departure from the welfare-model of disability– as well as conventional thinking about how best to support carers.

‘An Orphan of an Idea’

How did this radical departure in disability policy come to fruition?

Seven years ago, the then-Prime Minister of Australia, the Hon. Kevin Rudd, invited 1,000 prominent Australians to a convention in Canberra.

Those Australians represented indigenous and regional Australia as well as fields such as business, academia, the arts, science, medicine, the environment, the public service and the community sector.

The convention was called the Australia2020Summit.

The idea behind the Summit was to ‘help shape a long term strategy for the nation’s future’ – but Australia’s disability sector was largely shut out of that Summit.

We were shut out because, back then, disability issues were considered peripheral – out of sight and mind.

So far out of sight and mind that, in the lead up to the Summit, I – together with other people from the sector – lobbied the delegates to the Summit, because we had not been invited.

We asked the delegates to put forward an idea on our behalf: the establishment of the NDIS.

Like its aim, the thinking behind the NDIS was simple … and profound:

We knew the risk of significant and permanent disability at a young age was low, but the impact was very high and growing due to increased life expectancies;

And we knew that, if we approached significant and permanent disability as questions of insurance and investment, rather than welfare, we could change people’s lives and make our community more equitable and productive.

The NDIS was put forward at the Summit, but was an orphan of an idea.

Yet, out of the 138 recommendations at the conclusion of the Summit, the only one that is transforming Australia is the NDIS.

How did that happen?

How was this orphan then adopted by mainstream Australia?

The answer comes back to the power of unity – of being prepared to work alongside disparate groups for a common purpose – of making it clear the NDIS was about people with a disability and families and carers … instead of ‘either/or’. And that the entire Australian population would benefit from the peace of mind that the NDIS brings.

In short, success depended on the power of ‘And’.

‘A Unifying Idea’

Many factors account for the adoption of the NDIS:

  • leadership,
  • vision,
  • a sustained community campaign, and
  • evidence which framed disability as an economic issue, not just a social policy or human rights issue.

 
For example, in 2011, Australia’s pre-eminent independent economic think tank – the Productivity Commission – handed down a landmark report on the feasibility of the NDIS.

The Productivity Commission concluded that the economic benefits of the NDIS would far outweigh its costs and add close to 1 per cent to GDP.

PricewaterhouseCoopers followed up with an analysis, which found that without the NDIS government spending on disability would increase to two-to-three times the projected costs of the NDIS.

This economic evidence was compelling.

Ultimately, though, what made the NDIS irresistible was unity.

The disability movement created a new peak body, the National Disability and Carer Alliance, which brought together people with a disability, families, carers and disability service providers.

It was the catalyst for the disability sector to unite and speak with one voice.

Together, we created a united grassroots campaign, “Every Australian Counts”. It featured people with disability, their families and carers telling their stories with great courage and authenticity and used technology brilliantly.

Ultimately, though, the focus of the Every Australian Counts campaign – and the focus of the NDIS – was, and is, the needs of the individual with a disability.

This focus on the person with a disability was deliberate.

We focused on the person with a disability because everyone benefits if the quality of that individual’s life improves.

And we were fortunate that Carers Australia championed that strategy.

The leadership of people like Carer Australia’s CEO, Ara Creswell, and former President, Tim Moore, helped turn a fractious disability ‘sector’ into a united disability ‘movement’.

That unity gave momentum and purpose to the Every Australian Counts campaign – and made the NDIS possible, then inevitable.

Now, the challenge we face is to remain focused on the task of turning this orphan of an idea into a lasting, life-changing reform for hundreds of thousands of people with a disability, and their carers and families.

And as we do so the NDIS will answer the four big questions this Conference seeks to address.

  • How do societies and economies manage care in the face of demographic change and more mobile populations?

The NDIS manages care by taking a lifetime approach. And it’s portable within Australia and seeks to nurture and sustain carers in their roles. 

  • How can we support people to manage their working and caring lives, contributing to business, economic and social sustainability? 

The NDIS is a genuine win-win for the economy, the community, people with disability and carers. It makes mainstream life and employment more accessible, and will boost Australia’s GDP.

  • How can we share the costs of care – and ensure there is a vibrant market for care? 

The NDIS carefully balances the roles and responsibilities of the individual, families, the market and government to make the NDIS sustainable over time and as the Scheme grows it will create a national market for care and support – driving greater efficiencies and effectiveness. 

  • How can new technologies support the delivery of care, transform the lives of individuals and families and drive economic growth? 

The NDIS is using new technologies to inform consumers, support the delivery of services and assist with daily living and participation. By creating a national market, we are also attracting the interest of global technology companies.

Conclusion

In conclusion, let me come back to the notion of responsibility.

Thirty years ago, my wife Rae chose to care fulltime for our boys.

More than once in the years since then, we have wondered what would happen to our sons if something were to happen to us.

Such is the responsibility of parenthood … of being a carer.

However, we all share a greater responsibility – one that goes beyond the lives of ourselves or our children.

The greater responsibility we share is to those who follow us – the next generation of people with a disability and their families and their carers.

We owe it to those who follow us to forever remove the barriers to equality and opportunity.

We owe it to tomorrow to focus more on the ‘and’ than the ‘either/or’ of today.

And that is why I have worked so long and hard – arm in arm with so many others – to make Australia’s NDIS a reality.

Reform and especially big reforms are all about harnessing the power of And – of inclusion.

Yesterday, Baroness Pitkeathley in her inspiring opening address outlined the enormous successes of the carer movement over the last 50 years, to which she has contributed so significantly, and the challenges which lie ahead.

Her powerful message was that every movement to be effective needs a constituency, clear messages and respect. And to these I would add And.

Thank you.