Bruce Bonyhady, Chairman, National Disability Insurance Agency
Aussie Deaf Kids Conference
6 March 2016
I acknowledge the traditional owners of the land on which we are meeting, the Wurundjeri people, and pay my respects to their Elders – past and present.
I also want to thank Aussie Deaf Kids – particularly the chair, Steve Pascoe, and the chief executive officer, Ann Porter – for inviting me to speak this morning about the National Disability Insurance Scheme, or NDIS.
Ann and I have known each other for several years and I have great regard for her leadership and practical advice. We also have the shared experience of both being parents of children with disabilities.
For everyone in the disability community this is an exciting … and challenging … time.
Exciting – because, for the first time since deinstitutionalisation, we are on the cusp of transformational change.
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Challenging – because, to make the most of this transformational change, we must adapt.
What do I mean by ‘adapt’?
What I mean is each of us must get informed – and stay informed – about the changes that are coming; …
… we must be prepared to adjust our thinking and actions in response to evidence, because the NDIS is a journey of transformation; …
… and we must learn and grow.
I will have more to say about learning and growing later – in the context of the changes to the Agency’s approach to early intervention, which we announced a week ago.
But, for now, let me say this:
Lasting, sustainable progress will only come if the designs we make and the actions we take are based on evidence – and focused on maximising the independence, strengths and capabilities of people with disability.
Without an evidence-based approach, we run the risk of inadvertently creating new dependencies or reinforcing previous concepts of deficits.
With an evidence-based approach, we can – through the NDIS – open social and economic doors previously closed to people with disability.
And that is exciting. And that is challenging.
Now, you’re going to hear a great deal about the NDIS today.
What I want to do is put the NDIS in context – both personally and nationally.
Let me start with the personal.
Every Australian Counts
My wife, Rae, and I have three sons.
Our boys are no longer boys. They are all adults. All men.
But they were not 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 are shut out of mainstream life – and the ways in which those barriers can be overcome.
And that is why I – together with many people in this room – was proud to be a part of the Every Australian Counts campaign.
And that is why I serve as the chair of the National Disability Insurance Agency.
And that is why I am here this morning.
I am here because I have responsibilities to fulfil:
A private responsibility to my family – to be the best parent I can be and in doing so to support Rae as the primary carer of our sons;
And a public responsibility to do everything I can to ensure the next generation of families does not have to fight as hard as this generation has had to battle for a system which is, above all, equitable and decent – and consistent with the quintessentially Australian value of a “fair go”.
I am here because I know all-too-well the great fear that the carers and families of a person with a disability have … the What and how? questions.
What are the best early intervention services for my son or daughter?
How can I be confident?
What if … I can no longer care for my child?
What if … I die?
And I believe that the story of the NDIS is the answer to these and many other questions, because while we must all adapt as part of the NDIS journey, the NDIS, through its Act, provides a framework which gives certainty and facilitates optimisation.
Let me explain what I mean by that last point.
The National Disability Insurance Scheme was launched 32 months ago – on 1 July 2013.
The Scheme is Australia’s largest social and economic reform since the introduction of universal medical and health insurance in the 1970s.
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 an ordinary life.
Make no mistake, the NDIS is a nation building project to rival the Snowy Mountain Scheme …
… because it is an investment in the human capital of the Australian people that will last for the entirety of their collective lifetime.
It should come as no surprise, then, that the rollout of the NDIS is a monumental undertaking.
Consider the facts.
It represents a doubling of Australian government spending on disability from 0.5% of GDP to 1%.
It will lead to a complete restructuring of the disability sector.
And it is the start of a lifetime journey for each and every participant.
Since the Scheme’s operations commenced, 22,281 participants have entered the Scheme with approved plans.
This is in line with expectations.
The rollout of the Scheme is, therefore, on time.
The total cost of those plans is $1.5 billion. This is consistent with the original Productivity Commission estimates.
The Scheme is, therefore, on budget.
And, most importantly, client satisfaction is remarkably high, at over 90 per cent.
The Scheme is scheduled to be fully operational by 2020.
By then, the NDIS will have around 460,000 participants.
Those participants will include people with sensory, intellectual, physical, and psychosocial disabilities.
The Scheme includes early intervention services for children and adults with progressive conditions.
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.
It is participants and their families who determine what best meets their needs; not governments.
The Scheme therefore embraces the shift by governments to consumer-directed supports and creating new markets that have emerged in a number of countries.
However, we are undertaking this on a scale never seen before.
In this and many other respects the NDIS is world-leading.
Based on two international conferences I attended last year, the world is watching the development of the NDIS with enormous interest.
In this trial phase, we are learning and building, building and learning.
The notion of continual improvement is important and the Scheme will keep learning and refining its operations each and every year.
We are looking to create an e-market that helps participants become informed consumers.
Insurance Principles and Scheme Governance
It helps, when thinking about the NDIS, to reframe our thinking.
The NDIS is not like the old system. It is based on insurance principles.
Let me spell out those principles for you.
Traditionally, disability services took a short- to medium-term view.
Governments planned for expenditures over a 12-month period to – at most – a five-year time frame.
In contrast the NDIS is taking a lifetime approach.
Under an insurance model, expenditure is factored in over the life of an individual – and the scheme’s sustainability is measured by calculating the total future costs of all those who are insured.
This approach creates an incentive to make short-term investments that maximise lifetime opportunities and reduce long-term costs.
For instance, it’s a smart long-term investment to spend more on early intervention – because we know that maximises a child’s chances of succeeding in adolescence and adulthood.
Equipment and technology which increase functional capacity and independence are also investments, improving both quality of life and reducing total scheme costs.
Another essential aspect of insurance schemes is that they continually compare estimated and actual expenditure.
If the results are not as forecast the divergence is audited as part of an insurance prudential governance cycle – because that’s the way you control long-term costs and ensure Scheme sustainability.
As part of the insurance structure, our Scheme Actuary has built an outcomes framework to measure the medium and long-term benefits of the NDIS for participants and their families.
Monitoring outcomes, as well as the financial metrics, will help us ensure the Scheme is sustainable and economic – and keeps improving.
We will also keep monitoring any and all risks to the Scheme’s sustainability – such as scope-creep and cost-shifting.
Needless to say, there are a number of risks associated with a reform as complex as the NDIS – such is the nature of nation building schemes.
But you should have confidence that the Board is well aware of the risks and has a comprehensive risk management strategy in place.
Besides, the rewards of the NDIS far outweigh the risks, just as the Productivity Commission, Australia’s pre-eminent economic think-tank, found that the benefits of the NDIS greatly exceed the costs.
The shift to an insurance model is therefore revolutionary in terms of its structure, commitment to excellent governance and its focus on economic as well as social benefits.
It is revolutionary because the NDIS is not just reforming the old system – it is replacing and transforming that system.
Early Intervention- a Major Challenge and Opportunity
Of course, there are challenges and opportunities with every revolution.
Let me focus on one of those challenges – early intervention.
What we’ve found is that children with a disability are treated differently from jurisdiction to jurisdiction.
For instance, Victoria decided 20 years ago to take early childhood intervention out of disability and make it an educational issue.
A decade ago, New South Wales decided to build a state-wide network of early childhood intervention organisations, based in their communities.
In contrast, some other jurisdictions are essentially using a medical model which gives primacy to medical diagnosis and therapy.
As an Australia-wide scheme with equity at its heart, it is obvious that we need to adopt a consistent national approach to early intervention and rely on the best evidence to inform and continuously improve it.
We know that children learn best when they are in loving and supported environments.
As a father of children with disabilities, I understand the anger and grief that can follow diagnosis of a disability, the fear of the unknown, the challenge to accept an unexpected reality and the extreme stress within families, which disability can trigger.
It is therefore vital that families feel supported and receive reliable, accessible and timely information, so they can make informed choices.
Last week we announced a redesigned approach to early intervention, following extensive consultations.
We are describing our new model as Early Childhood Early Intervention or ECEI, because we are embedding our approach to early intervention within family centred, or early childhood, best practices.
We are setting up a network of ECEI providers, who will be our access partners. This will provide a wide gateway for parents who believe their child has a disability and a calm and supportive environment in which the functional impairments and needs of each child can be determined.
For example, for children with autism we will rely on advice from multi-disciplinary teams and they will observe children in multiple settings.
We also recognise that some children have multiple disabilities, for example, a mix of physical, intellectual and sensory disabilities, and so ‘one size most definitely does not fit all’.
Each child will receive a tailored package, which will be reviewed as needs change.
It is also important to recognise that ‘reasonable and necessary’ is a bounded concept. Investments funded by the NDIS must deliver value for money.
Value-for-money is essential because public confidence in the Scheme demands that the NDIS is sustainable for this and future generations.
For children experiencing significant hearing loss, we have also been consulting widely and have set up an Expert Reference Group.
Some of the members of this group are here today. I want to thank each and every one of you for your wisdom, knowledge and experiences – and for your generosity of time.
Through the Reference Group and the trials we have learnt a great deal – and those lessons are being integrated into our Early Childhood Early Intervention approach.
For children with hearing loss there must be an integrated and smooth referral path between the health system and the Agency.
This usually starts with Newborn Hearing Screening programs, but hearing loss can be diagnosed at any age.
That is why we want to keep building our relationships with audiology services and Australian Hearing.
In setting the NDIS framework for early intervention for children with significant hearing loss, the following objectives are paramount.
First, early intervention must not just focus on the child.
Families must also be supported, including through peer support. Our ECEI framework will be well positioned to deliver this.
Second, the links between the health system and the NDIS must be seamless and timely.
Third, there is strong evidence that time lost through delayed intervention or poor follow up can never be regained.
That is why early intervention and close monitoring of progress will be priorities.
Fourth, families need access to timely, reliable information so they can make informed choices. Creating an e-market will help in this area.
Fifth, we are working through the different eligibility criteria currently used by the NDIS and Australian Hearing.
The Expert Reference Group is guiding us through this process – and the Office of Hearing has advised that there will be continuity of support.
We want to ensure no child currently receiving support falls through the cracks.
Sixth, support must be based on need.
In some cases active therapy will work best. In other cases parent-based support will work best.
People with disability are individuals and will be treated as individuals with individual strengths and needs.
Finally, in building the new ECEI approach and selecting our access partners, we do recognise the special needs of children who have hearing impairments.
That is why we are identifying partners who have knowledge and experience – and share the NDIS’s values of maximising independence and control and choice.
As I said earlier, the Scheme will be guided by data and research.
We want to adopt the best-practices nationally – and ensure children with a disability receive efficient, equitable care and support.
To become a truly national scheme the NDIS must be driven by evidence – otherwise it will be as inefficient, inconsistent and inequitable as the patchwork of disability services that currently exist around our Federation.
I mentioned technology earlier.
We believe that another way we can maximise the independence of people with a disability is to harness next-generation technologies.
Late last year the National Disability Insurance Agency hosted the NDIS New World Conference.
Our goal was to turbocharge investment in technologies that benefit people with a disability – and we were encouraged by the response.
Global technology companies – including Microsoft, Apple, Google and IBM – attended the conference.
What we learned is that accessibility is now part of the DNA of these global technology titans.
Consider how far voice-to-text and text-to-voice software has advanced in recent years.
This software is fast becoming a primary user interface for tech products as varied as smartphones and personal computers.
There are now many apps to assist people with hearing impairments.
I recently read about a prototype smart device, worn on the wrist, which translates sign language into text and which is nearly 96% [ninety-six per cent] accurate!
The potential for progress through technology is enormous.
And the purchasing power of the NDIS market will help drive innovation – because we are creating a new market for inclusive technologies.
But we also need to keep pushing for progress in communities and workplaces.
Building the NDIS on Strong Foundations
I mentioned that around 460,000 people will receive individual funding packages when the NDIS is fully rolled out.
That is a fraction of the 2.5 million Australians with a disability aged under 65.
The vast majority of Australians with a disability will still receive most, if not all, of the supports they need through mainstream systems.
That’s where NDIS’s Information, Linkages and Capacity Building program – or ILC – comes in.
The purpose of the ILC is to influence and shape the delivery of mainstream services and programs to people with a disability – and change community attitudes to disability, including the hearing impaired.
That might mean …
tailoring information across all major disability groups and delivering it in culturally appropriate ways, including to the deaf community;
or helping people with a disability navigate the maze of services and programs offered in everything from education to health to transport to housing;
or using our expertise to help community service providers become more efficient and innovative in their dealings with people with a disability;
or building formal and informal networks between people with a disability, their carers and families, and their local community.
The point I am making is that ILC will mean different things to different people.
The bottom line is this:
We want people with disability to take their place in the mainstream of Australian society – and one way to achieve that is through systemic change to make our society more inclusive.
Let me leave you with this thought.
The NDIS belongs to the people in this room.
It is an idea that that came out of the disability community – and initially did not have the support of any state or territory or federal government.
It was an idea that we – and by ‘we’ I mean tens of thousands of people with a disability, as well as mums and dads and friends and carers – fought for.
And we won the community’s support and the support of all governments for the NDIS.
Today, I stand here as Chair of the Board of the NDIA that is charged with building this ambitious scheme.
I am proud that despite very significant implementation complexities, the NDIS is meeting all its targets. It is on time and is on budget.
The NDIS will – in the years and decades to come – open up this great country to generations of boys and girls, men and women, with a disability.
We have come a long way, but we still have so much further to travel.
And as we push on – as we create a fairer, more efficient and more productive Australia through the NDIS – let us not forget the years of struggle that laid the foundation for this progress …
… because the ground we have gained must never be surrendered.