Bruce Bonyhady Speech: ‘Reducing the Inequality of Luck’

Bruce Bonyhady, Chairman, National Disability Insurance Agency
ASID Annual Conference
Melbourne
11 November 2015

Introduction

Good morning.

I would like to 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 congratulate the Australasian Society for Intellectual Disability on achieving a rare milestone.

This Conference – ‘Making It Real Together’ – is the 50th annual ASID conference.

When this organisation held its first Conference – in Melbourne in 1965 – the world was a different place:

  • Robert Menzies was Prime Minister;
  • Charles Perkins was leading the Freedom Ride through regional New South Wales to highlight the everyday discrimination faced by Indigenous Australians;
  • And if you were born with an intellectual disability you were sent to live in an institution like Kew Cottages in Melbourne – unless your family was bloody-minded enough to take you home.

Much has changed for people with a disability since 1965 not all of it overnight.

For instance,

Kew Cottages remained for another 43 years after that first ASID conference;

It would take nine years before the United Nations introduced the Declaration of Rights of Disabled Persons;

And 41 years before the UN’s Convention on the Rights of Persons with Disabilities was introduced.

As a consequence of the slow speed of change we are yet to make the rights of persons with a disability a reality.

Most of the institutions have gone – but the barriers remain.

According to the OECD, 45 per cent of Australians with a disability were living at or below the poverty line in 2010 – the worst outcome of any OECD country.

Our record in terms of employment of people with disability is also very poor, ranking in the bottom one-third of OECD countries.

And, most disturbingly, people with a disability are significantly overrepresented in Australia’s jails.

More change is necessary – and, ladies and gentlemen, that change does not begin and end with the National Disability Insurance Scheme.

And that’s what I want to talk to you about this morning.

NDIS Overview

Let me start by defining the size and the scope of the opportunity that is the NDIS.

The NDIS is the most significant economic and social reform since the introduction of the original Medicare scheme in the 1970s and compulsory superannuation in the 1980s.

It will make our country more prosperous, more equitable and more accessible.

The Scheme was established on 1 July 2013.

Currently, the Scheme is in eight sites and has close to 20,000 participants, with another site due to commence shortly in North Queensland.

About 70 per cent of those participants have an intellectual disability.

And 85 per cent of participants aged between 15 and 24 have an intellectual disability.

When it is fully operational, in 2019, the Scheme will serve around 460,000 participants.

NDIS participants include people with intellectual, physical, sensory and psychosocial disabilities.

There are also early intervention services for children with significant developmental delay and manifest disabilities, and adults with progressive disabling conditions.

The assistance those participants receive is based on meeting their ‘reasonable and necessary’ needs – primarily using a functional assessment, rather than a medical diagnostic, approach.

Each participant has a plan and goals that focus on maximising independence and social and economic participation.

And each participant receives a funding allocation, split into three broad categories:

  1. Equipment and capital items;
  2. Capacity building and investment, including therapy services and early intervention; and
  3. Core supports, such as personal care and access to the community.

Funding for equipment, such as a wheelchair, must be used for that purpose.

Capacity building supports are based on an evidence base of best practice, while core supports provide participants with great flexibility to purchase the supports that best meet their needs and budget within the overall framework of ‘reasonable and necessary’ benefits.

This requires participants and their families and carers to become informed consumers, which will take time. Participants and their families and carers will need accessible, reliable and timely information.

Once the NDIS is in place, every Australian who is born with or acquires a disability before the age of 65 and whose disability is permanent, which significantly affects their functional capacity and who require ongoing support, will be covered.

Insurance Principles

In short, the NDIS is an insurance scheme and is based on insurance principles.

Let me spell out those principles for you.

Traditionally, the costs of disability services have been approached using a short- to medium-term outlook.

Governments plan for expenditures over a 12-month period to – at most – a five-year time frame.

As a consequence, the funds available for disability can change – depending on the economy, tax revenues and the requirements of other portfolios.

That means disability services have had to perennially justify their existence – and there are always short- to medium-term pressures to cap or cut costs.

Insurance models are very different.

Under an insurance model, expenditure is factored in over the life of an individual – and scheme 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 example, the best way to reduce long-term costs is to increase an individual’s independence and lift his or her participation in the community and the workforce.

A second aspect of insurance schemes is that they continually compare experience with forecasts.

Divergences are investigated carefully, as part of an insurance prudential governance cycle, to control long-term costs and ensure Scheme sustainability.

To shape future directions of the NDIS we are also building an outcomes framework to measure the medium- and long-term benefits of the NDIS for participants and their families.

The measures include choice and control, independent living, relationships, health and well-being, home, lifelong learning, work and social, community and civic participation.

Monitoring the outcomes across these domains over time, as well as the financial metrics, will help us ensure the Scheme is sustainable. It will also help participants in the NDIS build better lives.

This shift from a welfare to an insurance model for disability services – together with the alignment it creates between the interests of the Scheme and the interests of participants, families and carers – is revolutionary.

It is revolutionary because the NDIS is not just reforming the old system – it is replacing and transforming it.

But there are challenges, as well as opportunities, with every revolution.

Let me focus on these aspects of the NDIS, with a particular focus on putting people with intellectual disability at its centre.

People with Intellectual Disability are at the Centre of the NDIS

The starting point for the Scheme is its legislation, the NDIS Act.

That legislation is based on a presumption of capacity, control and choice.

It is the right framework, as it is consistent with the UN Convention on the Rights of Persons with Disability.

Given that around 70 per cent of the participants in the NDIS have an intellectual disability, this means that the National Disability Insurance Agency must ensure the Scheme is person centred, and provide maximum control and choice for people with an intellectual disability.

In other words, it has been essential to operationalise the NDIS in inclusive ways.

Over the past two-and-a-half years through the trials, we have responded significantly to these opportunities and challenges and continue to learn and refine our approaches.

First, we are co-designing the NDIS with people with intellectual disability. In response to feedback, we have simplified our communication products and plans, to make them more easily understandable, and people with intellectual disability are providing feedback on the new IT system.

The Independent Advisory Council has established an Intellectual Disability Reference Group, which includes people with intellectual disability, other experts and senior Agency staff.

The Group is developing advice to ensure the Agency, in all its functions, creates opportunities for people with intellectual disability to live ordinary lives, including:

  • A framework to ensure the NDIS supports inclusion in the community and other contemporary practices;
  • Principles to guide our practices in working with participants;
  • NDIS staff recruitment and training, which highlights the needs of people with intellectual disability; and
  • Outcomes measures to ensure our policies and practices are effective.

Second, we are using the nominee provisions in the Act and a range of other strategies to facilitate supported decision-making for people with intellectual disability.

Those strategies include more intensive planning sessions and working with participants over extended time frames.

The Agency is also liaising closely with the Australian Guardianship and Administration Council and its members regarding the legislative frameworks for supported decision-making, which vary across jurisdictions.

On two recent overseas trips I have also been very interested to understand international approaches to supported decision-making – including the ‘got man’ legislation in Sweden and Representation Agreements in British Columbia.

The purpose of the Representation Agreements is to best represent the interests of the person with a disability.

The aim is to ‘stand in their shoes’.

There is an obligation to foster independence and involve the person with disability as much as possible, and so provide for the dignity of risk.

As we continue to learn and build the NDIS, I expect international experiences and practices will be very relevant.

Third, the NDIS invests in participants, including their social capital.

We are therefore encouraging the development of circles of support and innovations such as Micro-boards.

The outcomes framework includes succession plans for carers.

The proposed National Quality and Safeguards Framework emphasises Developmental Safeguards, which are particularly relevant for people with intellectual disability.

Fourth, the Vision of the NDIS is to maximise independence and social and economic participation.

We are therefore committed to addressing the broad range of barriers for scheme participants, so they can become more economically independent through employment.

We know that transition points are critical to future outcomes.

As a result, over the past two-and-a-half years we have worked with participants who are moving from school to post-school options.

Our view is that a more comprehensive approach is required to prepare people to enter the mainstream workforce and community life.

The trial sites have been developing a package of supports that assist students with disability who are completing Year 12 in 2015

The new support packages will be trialled in early 2016.

The packages will help around 150 participants to identify their work goals, then provide them with a range of supports that give them the confidence, skills and qualifications they need to achieve those goals.

We are also trialling new approaches to building self-advocacy and leadership skills amongst people with intellectual disability.

Fifth, technology represents a major opportunity for people with intellectual disability.

Last week, the Agency hosted the NDIS New World Conference.

The goal of that conference was to turbocharge investment in technology that benefits people with a disability.

All the major technology companies, including Microsoft, Apple, Google and IBM, attended the conference because accessibility is now part of the DNA of every major global technology company.

Think about that. In 1965, accessibility was an alien concept. Now, it is a routine part of technology research and development.

That change in approach is an extraordinary development.

Looking ahead, change promises to be exponential, because Moore’s Law, which says that computing power doubles every two years, is now being applied to the benefit of people with disability.

The digital divide is being replaced by digital inclusion for people with disability.

An example is voice-to-text and text-to-voice software.

This software was developed primarily for able-bodied people but is of enormous benefit to people with an intellectual disability who may have comparatively limited literacy skills.

Finally, the NDIS must be accessible and inclusive if you have an intellectual disability and you are Aboriginal, a Torres Strait Islander, from a culturally and linguistically-diverse background or you are highly marginalised.

Our results in the Barkly Shire, which is also one of the most remote parts of Australia – an area of 329,000 square kilometres and with a population of just 8,500 people – shows considerable progress has been made to support inclusion of Scheme participants who are Aboriginal and have an intellectual disability.

People with intellectual disability who are also very marginalised are likely to have multiple intersections with other systems, such as the justice system, mental health and homelessness. This leads to additional complexities and as a result the Agency is building in a ‘triaging’ approach to coordinate responses to these additional needs.

But more is required, because the NDIS is part of a bigger picture: the National Disability Strategy.

The National Disability Strategy

Every Commonwealth, State and Territory, and Local government body, agency and department has an obligation to ensure their programs, services and premises are accessible and inclusive to all Australians.

This is because mainstream government services have universal service obligations – to all Australians

The NDIS is not responsible for mainstreaming in our schools.

Nor are we responsible for the healthcare of people with a disability – be that illness, a chronic disease such as Type 2 diabetes or the treatment of a substance abuse problem.

Nor are we responsible for the incarceration – nor the rehabilitation – of people with a disability who have committed a crime.

Nor are we responsible for guardianship.

Nor are we responsible for the clinical aspects of mental health services.

Nor are we responsible for ensuring local council and public transport services are accessible and inclusive.

The risk is that some government agencies and departments may see the NDIS as an opportunity to shift costs.

If anything, the NDIS makes government agencies, departments and councils more accountable for the obligations they owe to people with a disability.

This was recognised by the Productivity Commission back in 2011.

In addition, the private sector has an important role to play – employing people with disability and making buildings and homes accessible.

That is why the NDIS is not now – and nor will it ever be – Australia’s one-stop-shop for all things relating to disability.

And that is why the goals of the National Disability Strategy are critical.

Building the NDIS on Strong Foundations

When fully rolled out, around 460,000 people will receive individual funding packages through the NDIS.

Yet, there are 2.5 million Australians with a disability aged under 65. Many in this group have a mild or moderate intellectual disability.

And more than 900,000 of those 2.5 million citizens say they need help at least once a week.

The Productivity Commission found that they would still need some additional supports, following the introduction of the NDIS.

The Commission called the collection of activities that would cater to these individuals – together with their families and carers – as ‘Tier 2’.

The Disability Reform Council later agreed to rename ‘Tier 2’ as ‘Information, Linkages and Capacity Building’ – or ILC – to reflect the kinds of activities that would actually be delivered.

The ILC is critical to the sustainability of the NDIS and the equity and culture of the Scheme.

In fact, the ILC is one of the foundations on which the NDIS is being built.

Let me explain why that is the case.

Equity requires that the last person to receive an individual package receives little more than the people most reliant on the ILC.

If this is not the case then people with a disability who are not eligible for an individual package will become more disabled, requiring more support in the future. This would make the NDIS less sustainable.

Further, if those who do not qualify for an individual package do not receive the supports they need, they will need to prove how disabled they are in order to enter the NDIS.

This would undermine the culture of opportunity and independence of the Scheme.

Earlier this year, in July, every Australian government agreed to a Policy Framework for ILC.

That Policy Framework makes it clear that ILC supports will not replace or duplicate mainstream programs and services delivered to people with a disability.

That means the ILC supports will be designed to bolster or support those mainstream programs and services.

Those ILC supports are broken down into five ‘streams’.

  1. Information, Linkages and Referrals;
  2. Capacity building for mainstream services;
  3. Community awareness and capacity building;
  4. Individual capacity building; and
  5. Local area coordination.

Let me dwell on that second stream for a moment.

The Policy Framework makes is clear that ‘Capacity building for mainstream services’ does not mean the ILC is a funding source for organisations looking to fulfill their obligations under the UN Convention or the National Disability Strategy.

Given the large variation in the impact of disability, a significant proportion of the 2.5 million Australians who have a disability are likely to receive most, if not all, of the supports they need through mainstream systems.

It makes sense, then, to ensure mainstream services and programs are as accessible and inclusive as possible.

Making mainstream services and programs more accessible and inclusive will strengthen the NDIS because less people with a disability will need to access individual packages.

Beyond mainstream services and programs it also makes sense to make the communities in which all people with a disability live and work more inclusive as well.

That’s where the ILC comes in.

The purpose of Information, Linkages and Capacity Building is to influence and shape the delivery of mainstream services and programs to people with a disability – and change community attitudes to disability.

That might mean

  • 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 providing more supports – including peer support – and counseling for carers;
  • 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, for the Scheme, is we want to minimise unnecessary demand for individually-funded responses.

We want to encourage and enable people with disability to be part of mainstream community – and one way to achieve that is through systemic change to make our society more inclusive.

We are now finalising the ILC Commissioning Framework.

It is being co-designed, aligned to our outcomes framework and will be released before the end of the year.

And provided it has sufficient resources, it will have the additional benefit of improving the long-term sustainability of the Scheme.

Performance

Speaking of sustainability, the Scheme is on time and on budget – and client satisfaction is above 90 per cent.

In other words, we’re exactly where we need to be.

One of the key goals in the Strategic Plan of the National Disability Insurance Agency is to keep building public confidence in the Scheme.

That means continuing to meet goals, and maintaining and building a performance culture within the Agency.

In short, performance is everything and that means continuing to achieve the quarterly targets set by governments.

For the NDIS, though, there’s more to performance than just meeting quarterly targets.

We must also keep learning as we build the Scheme so that it performs over the lifetime of each and every participant, because the real impact of the NDIS will be measured in generations, rather than quarterly reports.

That’s why, during the trial period, we have refined the design and operation of the NDIS – to ensure it best meets the needs of people with disability and is sustainable.

However, the learning will not end with the conclusion of the trial period in the middle of next year.

The Scheme will keep learning and refining its operations each and every year.

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 NDIA 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 benefits of the NDIS greatly exceed the costs.

Scheme Benefits

Consider the evidence.

Doing nothing would have cost more than implementing the NDIS.

The cost of the NDIS, once fully operational, will be $22 billion a year in 2019-20.

That sounds expensive until you consider the alternative.

Since the 1990s, disability expenditures by Australian governments have increased at between 7 and 8 per cent per annum in real terms, which is completely unsustainable.

There are demographic reasons for this surge in demand.

  • People with disability are living much longer;
  • Families are smaller, and more geographically dispersed;
  • And there are increasing rates of marital breakdown, especially amongst families with children with a disability.

Until the NDIS was introduced about 80 per cent of the care for people with disabilities was provided informally by families and friends.

Consequently, every 1 percentage point reduction in informal care, for example, from 80 per cent to 79 per cent, has translated into a five per cent increase in government spending – without any net increase in total support.

In short, without the NDIS, governments were being forced to spend more on crisis and emergency supports and government funded disability services were in a death spiral.

In 2011 PricewaterhouseCoopers found that – without the NDIS – government expenditures on disability would increase to two-to-three times the projected costs of the NDIS.

In other words, the NDIS is a smart investment.

After all, the Productivity Commission found that the NDIS would result in an additional 320,000 people with a disability and 80,000 carers being employed and boost GDP by 1 per cent by 2050.

Let me put that another way: national expenditure on disability services is projected to increase by 0.5 per cent as a result of the NDIS – but, in return, the economy is projected to increase by 1 per cent.

By any measure, the NDIS is in the national interest.

Conclusion

Let me leave you with this thought.

Today is the 40th anniversary of the dismissal of the Whitlam Government.

Much has already been written and more will be written and said today about the rights and wrongs of the dismissal – as well as the strengths and weaknesses of that Government.

I’m not about to buy into the merits and demerits of those debates.

But I will note that on the day of the dismissal legislation for a scheme much like the NDIS was before Federal Parliament.

That 1975-era scheme was strongly opposed by vested interests – and was subsequently abandoned by the Fraser Government.

It took another 36 years before Federal Parliament was able to see past that missed opportunity and establish a national disability insurance scheme to operate in the interests of all Australians.

Speaking in 1974, Gough Whitlam had this to say about the need of a disability insurance scheme:

‘Australians should not have to live in doubt or anxiety lest injury or illness reduce them to poverty We want to reduce hardships imposed by one of the great factors for inequality in society – inequality of luck.’

Speaking in 2011 when the NDIS was before Parliament, Malcolm Turnbull supported a Scheme that is all about reducing the ‘inequality of luck’.

Mr Turnbull said:

‘The present system for disability welfare is as inefficient as it is limited; as frayed as it is broken.

‘It is a system where funding is directed to service providers rather than towards the people who need that care themselves or, indeed, towards their carers.

‘If the service providers are not able to meet the requirements of the person suffering from disabilities, that is too bad; if they are, then join the queue.

‘These challenges are multiplied when moving across local boundaries, let alone to a different state.’

What those words demonstrate for me is how much progress has been made since 1975.

Disability is no longer a marginal policy issue.

It is a mainstream issue with a great deal of common ground between the major political parties.

That’s why the NDIS is a unique opportunity to build on this bipartisanship and make Australia one of the most inclusive societies in the world.

After all, the NDIS is not just for the 460,000 participants.

The Scheme is for everyone .and for future generations.

In the years and decades to come, thousands of Australian citizens will either be born with or acquire a disability.

And the probability is that some of those future participants will be related to people sitting in this room.

Those boys and girls may be your children or grandchildren.

Those men and women may be your partner.

Or it might be you.

Whoever they are, those Australians will be people with ambitions and abilities.

They will be like you and me – and they will deserve a fair go so they can harness their abilities and realise their ambitions as equal citizens.

Thank you.