Speech by Senator the Hon Jan McLucas

Inclusion Melbourne’s Inaugural Gawith Lecture ‘The National Disability Insurance Scheme: What does it mean for you?’

Location: Melbourne

(Check against delivery)

Thank you Daniel for your warm welcome.

Good evening everyone.

I would like to acknowledge the Traditional Owners of the land that we are meeting on, the Wurundjeri people, and pay respects to their Elders, past and present.

Thank you for the invitation to be here today.

Introduction

It’s a real honour to be speaking at an event that also forms part of your celebration of International Day of People with a Disability at the Inclusion Melbourne’s Inaugural Gawith Lecture.

It is amazing, that it’s been 20 years since the UN General Assembly declared 3 December International Day of People with Disability.

Declaring it a day to promote awareness of disability issues and the abilities of people with a disability.

A day to increase awareness of the benefits of inclusion of people with disability in every aspect of political, social, economic and cultural life.

And we have made good progress over the past two decades.

The expansion of the digital age has enabled people with disability to connect more easily with friends, family, and information.

Between 2003 and 2009, the number of people with disability over the age of 15 with access to a computer at home increased by 50 precent.

The digital revolution is helping people with disability become more connected, more included in society.

Physical accessibility is another example – compared to 20 years ago, we have far more accessible public transport options, accessible public conveniences, accessible public buildings.

I am proud of the Australian Government’s $11 million Accessible Communities initiative, which is delivering practical support to local councils across Australia to ensure people with disability, their friends and carers can get involved in community life – by building, for instance, inclusive playgrounds that local children with disability can play on or making stages accessible so everyone can participate in performing arts.

And through that $11million dollar investment, we leveraged over $20 million from local councils – a great example of multiple levels of Government focusing on achieving inclusion.

But it’s certainly not time to rest on our laurels.

In the words of one of the Diversity Managers at Woolworths:

I think we’ve got a long way to go, and I think there is a huge amount of opportunity, I think we’ve recognized that we’ve come up quite poorly as a country in international standards.

Or in the words of Damien Griffis, the Executive Officer of First Persons Disability Network:

The disability service system has failed Aboriginal people with disability. That’s government and non-government and within the Aboriginal sector.

So yes, we have made progress – but we still have so far to go.

NDIS

That brings me to the topic of today’s lecture – ‘The National Disability Insurance Scheme: What does it mean for you?

People with disability, their families and carers are among our nation’s most disadvantaged groups in terms of social isolation, financial status and personal well-being.

We have a cruel lottery where the support people with disability, their families and carers receive depends on where they live, what disability they have, and how they got that disability.

Doing something different is desperately needed in disability.

We have made good progress towards the delivery of a National Disability Insurance Scheme since the Prime Minister, Julia Gillard, released the Productivity Commission’s final report into care and support for people with disability over 15 months ago on 10 August last year.

“Underfunded, unfair, fragmented, and inefficient, giving people with disability little choice or certainty over the care and support they receive” was how the Productivity Commission described the system.

It found that the current disability system is a long way from being adequate and from truly meeting the needs of people with disability, their families and carers.

The Commission found that ageing carers are left desperately worried about what will happen to their child once they are no longer able to care for their child.

And those they care for also feel the pressure of uncertainty, worrying about what the future holds for them.

Like Ron, an aged pensioner who cares for his intellectually disabled son, and shared his story on our NDIS Your Say website, saying it is becoming too much for him.

Yet no provision seems to have been made to ensure that he continues to get this most valuable support.

Or Wendy, who is 53, and depends on her 77-year-old mother for support:

I have no idea what will happen when my mother is unable to care for me. This is quite scary for me as my biggest fear is to be placed in a nursing home.

There are many stories like Ron’s and Wendy’s on our NDIS Your Say website, where so many people have posted their stories, their struggles and their hopes.

And every one of them makes us more determined to establish a system that is also sensitive to carers’ circumstances and takes into account the sustainability of each person’s caring arrangements.

These stories are far too common, and as a country that has the ‘fair go’ at its core – we need to do better, and people with disability deserve that fair go as much as you and I.

The scheme will provide the support and services Australians expect to see for people with disability, their families and carers.

An NDIS will insure all Australians against the cost of significant disability, and provide care and support for about 410,000 people with significant disability.

It will transform disability services in Australia. Rather than funding being eked out and rationed, funding will be purely based on need.

It will recognise that disability is for a lifetime and will take a lifelong approach to providing care and support.

This is a truly historic reform – whose time has come.

A total transformation, rather than incremental change, is required to provide adequate support for people with disability who need assistance with daily activities such as communication, mobility, self-care or self-management.

There is a tremendous amount of work involved in building an NDIS.

We committed $1 billion in the 2012-13 Budget to deliver the first stage of an NDIS.

This means that from July next year, more than 20,000 people with a permanent and significant disability, their families and carers will start to benefit from an NDIS.

An NDIS will give people with disability, their families and carers certainty that they’ll receive support over their lifetimes, and will help give all Australians the peace of mind that if something happens to them or to a loved one, there will be a helping hand when they need it.

Under an NDIS eligible people with disability will:

  • receive supports that are individually tailored to their circumstances, and respond to each individual’s goals and aspirations;
  • have decision-making power about their care and support, including choice of service provider;
  • be assisted by local coordinators to help manage and deliver their support; and
  • access a system they can easily navigate and that will link them to mainstream and community services.

For many people this will involve the type of support that they are familiar with, for example a support worker who comes to assist them with activities that they cannot do without help, or help with aids and equipment like a wheelchair or a hoist.

It’s useful to envisage the NDIS as comprising three key elements:

    • that it will be an insurance-based scheme,
    • that it will protect and enhance choice and control for participants,
    • and that it will draw on a full range of community based and mainstream supports for people with disability.

I’ll now explain each of these elements a little.

An NDIS will be based on a social insurance approach which will share the costs of disability services and supports across the community.

This will provide long-term certainty for the resourcing of disability care and support.

A system based on insurance principles also makes financial sense….it is cheaper to invest early, to get results, so people can live a more independent life.

The new scheme will also aim to expand each person’s choice and control over their disability supports.

This is both in recognition of the rights of people with disability to exercise control over their supports and services, and is also a proven way to support better outcomes.

People with disability should be able to determine the types of supports and services they use, who provides them and where they are provided, how resources are used and how their funding is managed.

Finally, the NDIS will actively foster community based supports for people with disability and draw on mainstream supports.

It will draw together the often ad hoc and disparate disability services into a coherent national scheme of supports.

An NDIS will change the way disability care and support is provided. It will provide peace of mind for people with a significant and permanent disability and those who care for them.

Launch

Minister Macklin recently detailed some of the important elements that will be part of the legislation set to be introduced to Parliament in just a couple of weeks.

We anticipate that the legislation will be referred to a Parliamentary committee so that we can get feedback from people with disabilities, families, carers, and service providers.

The legislation will set out the core elements of the scheme, including who is eligible and establish a definition of reasonable and necessary support.

It will also establish the NDIS Launch Transition Agency as an independent body.

It will allow the Agency to work with people with disability to identify their goals and aspirations as part of the process of developing a personal plan.

The plan will give people certainty by better connecting them to mainstream and community services they require and detailing the packages of supports they will receive.

Importantly the plan will also include strategies for maintaining the sustainability of informal care.

The legislation will also allow participants to manage their own funding if they wish – because we know more flexibility and choice is what many people with disability want, so they can get the right support when they need it.

Under the legislation, the Agency will work with service providers to make sure that services are of high-quality and meet people’s needs.

And to ensure a fair and equitable process, the legislation specifies that individuals can seek a review of NDIS decisions.

This framework for the national scheme will ensure individual people with disability across the country are given care and support based on their needs, and will give them access to real choice and control over these supports—meaning more control over their lives.

And I am pleased that everyone is pulling together to prepare for the launch in the Hunter in New South Wales, the Barwon area in Victoria, and in South Australia, Tasmania and the Australian Capital Territory.

These sites will benefit more than 20,000 Australians with disability.

And whilst we are preparing for a launch we are also working with the States and Territories on the rollout of the full national scheme, irrespective of whether they currently have a launch site or not.

So it doesn’t matter where you live or how you acquired the disability, you will be provided with support and services to live a full life.

I am conscious that there are some people with disability, their families and carers who are concerned about the implications of transitioning to an NDIS and what it may mean for the viability of the services they currently receive.

We understand that ensuring the disability service sector has the ability to harness the opportunities available in an NDIS world is absolutely critical to the Scheme’s success and to ensure people with disability receive high quality, flexible and effective services.

And we know that this needs to happen for the five launch sites.

The development and implementation of this first stage will test key features of the new scheme, including how to provide support on an individualised basis that gives a person with disability choice and control, and how to manage disability care and support on the basis of insurance principles.

An NDIS will involve individually funded support packages for many people.

People with disability who are eligible for services in the scheme will be making choices about the supports they receive and the providers they use in a market based environment.

Overall, we are acutely aware that we need to manage the transition to an NDIS well.

It will not be a matter of waking up one morning and telling people an NDIS has started, then sitting back to see whether the new Scheme works.

As we prepare for the launch, we are looking very closely at what works well currently, and how we can build on this under the new Scheme.

We are very keen to ensure that the existing knowledge base that has been built up over many years is preserved and used to inform the development of the service system.

If people with disability are to be able to exercise choice and control, they need to have around them high quality, diverse and responsive providers.

We also recognise that many people with disability will need support to move from being told what services they get to making their own choices about the services they receive.

We really want to get this right – for everyone involved.

We want to make sure that an NDIS will allow people with disability, who are already receiving high quality support, to continue with their existing arrangements under an NDIS – so no one will be worse off.

An NDIS will bring significant increases in spending to better meet needs and enable individuals to make progress towards their goals.

The national rollout will be informed by the lessons we learn from this first stage.

Engagement

A key part of the Government’s commitment to making an NDIS real is to engage with key stakeholders at all stages of building the NDIS.

To ensure people with disability, their families and carers are involved, we have established the NDIS Advisory Group and expert groups focusing on

  • a national approach to control and choice;
  • eligibility and assessment;
  • quality safeguards and standards; and
  • disability workforce and sector capacity.

These groups have been tasked with actively engaging with the community to ensure we are building a scheme that meets the needs of people with disability, their families and carers.

The expert groups meet regularly and provide advice on key design aspects of an NDIS.

The Advisory Group has met with experts and stakeholders in many of the capital cities in Australia and talked about what really matters for people with disability, their families and carers.

The Government has also established a Disability Workforce and Sector Capacity expert group to help ensure a smooth transition for the delivery of services under an NDIS.

It is providing advice about how the disability sector should be supported to deliver services under the new scheme, and how the disability care workforce can be prepared for the change.

The Government wants this transition to be as smooth as possible and to support the disability sector and its workforce through the change.

The advice of this expert group over the next few months will be critical as we move towards the first stage of a scheme.

We have also provided funding to the National Disability and Carer Alliance to engage people with disability, their families and carers and service providers across Australia (and not just the capital cities) about what they believe is important in the design and implementation of the NDIS.

And I have also conducted 39 NDIS Forums around the country over the past 15 months – discussing what an NDIS will mean for people with disability their families and carers – and this has been an eye opening experience.

In July 2012, COAG agreed the need to publically discuss who would be eligible for an NDIS and what constitutes a reasonable and necessary level of support for people with disability, their carers and families, and there were hundreds of responses were received.

In September the NDIS ‘Your Say’ online forum was launched, giving people an opportunity to get involved as we transform the way disability care and support is provided.

More than 4000 people have visited this website and provided feedback.

Both of these exercises have been used to inform us of the design details on reasonable and necessary supports and eligibility included in the legislation.

For example, we heard that it was vital that we explicitly include ‘early intervention’ in the definition of eligibility.

Of course, support for early intervention is one of the key pillars of an NDIS, but the feedback we received made us realise how important it was that this was stated upfront.

Early intervention will now be explicitly included in the legislation.

This means the scheme will fund supports that help minimise the impact of a person’s disability from its earliest appearance – helping to improve their functioning or prevent the progression of their disability over their lifetime.

Effective early intervention can make a huge difference to the development and independence of adults and children with disability.

And this makes financial sense….it is cheaper to invest early, to get results, so that people can live a more independent life.

We know that we need the expert advice of people with disability, their families, carers, service providers, disability care workers and advocates as we do the detailed work to design a scheme.

Conclusion

A National Disability Insurance Scheme will give all Australians the peace of mind to know that if they have or acquire a disability that leaves them needing daily assistance with everyday life, that they will be supported.

This means building a sustainable system that is insurance based, and which will insure all Australians for the cost of care and support in the event of significant and permanent disability.

And whilst I am talking about the need for stability for the scheme I would just like to touch on some of the media coverage today about the cost of an NDIS. The coverage today is based on a report requested by the Government of the Australian Government Actuary, to provide due diligence on the Productivity Commission’s report.

I can assure you that there has been no cost blow out to an NDIS.

And that the figures contained in the Australian Government Actuary’s report are consistent with the model the Productivity Commission set out.

It is unfortunate that some creative mathematics, on data that has already been in the public sphere for some times can whip up such a frenzy.

It’s disappointing that it appears to be designed to shock rather than contribute meaningfully to public debate.

And as Dr Ken Baker said today, “Economically literate policy-makers who read beyond the headlines will realise that the report’s alarmist claims lack substance.

“It’s hardly a revelation that the cost of the NDIS will rise over time; the cost of virtually everything rises over time with inflation and wage growth. The report conveniently ignores the fact that Australia’s economy and tax revenue will also grow over time.”

I want to reassure you that we are working in great detail to ensure the NDIS is built to be strong – and sustainable. I want to reassure you that our commitment to an NDIS is as steadfast as it has ever been

The main changes will be aimed at those who are most in need, providing long term, high quality support for around 410,000 people who have a disability that significantly affects their communication, mobility, self-care or self-management.

It will take account of a person’s situation and needs, including their aspirations, their support network and their potential.

An NDIS will look beyond immediate need, and will focus on what’s required across a person’s lifetime. This means recognising that at different life stages, funded supports might change as new needs arise, or transitions are successfully implemented.

Importantly, an NDIS will recognise the critical role of friends and families as carers, and will invest to help nurture and sustain the informal care system to improve the wellbeing of carers.

The Government wants Australians with disability, their families and carers to start benefiting from an NDIS as quickly as possible – because we understand how long people have waited for change.

And change is on its way – change that has been a long time coming.

In 2022, when we’re gearing up for the 10th anniversary of the launch of the NDIS in Australia, we will be able to reflect on the amazing progress that we have made.

And we will have cause to celebrate.

Thanks for listening. I am now happy to take any questions you may have.

ENDS