Making a National Disability Insurance Scheme Real

OPINION: As the Federal Government prepares to release its draft legislation to establish the National Disability Insurance Scheme, the Minister for Disability Reform, Jenny Macklin has outlined the elements of the Bill in a speech to the National Press Club in Canberra.

This is an edited version of that speech.

The National Disability Insurance Scheme is about to be real for people with disability, their families and carers. Set out in national legislation.

Legislation that, at its heart, is designed to address the frustrations, the sense of missed opportunities driving (those) stories that have been around for years.

Legislation that is practical, so that all of us – governments, people with disability, families, the disability sector – are clear about this radical change we are about to undertake.

I will be releasing the draft of this legislation shortly and I would like to take you through some of the most important elements. It is our intention to introduce the legislation to Parliament in the final week of sitting this year.

This will allow us to continue to do the necessary work to prepare for launch of an NDIS in five sites from mid-next year.

It will also provide sufficient time to allow for it to be referred to a Parliamentary Committee, so that we can continue to receive valuable feedback from people with disability, their families, carers and those in the disability sector.

The draft legislation has already been heavily shaped by what we have heard from these people, and the work we have done with our colleagues in the states and territories.

The NDIS Launch Transition Agency

The legislation will establish the NDIS Launch Transition Agency as an independent body.

The Agency will work with people with disability, their families and carers, providers and their local communities to deliver care and support .

It will be a constant for people as they interact with the new scheme.

And will play the central role in ending the frustration and confusion too many people currently face, as they knock on the door of service provider after service provider looking for the support they need.

The Agency, under the stewardship of CEO David Bowen, is already working hard to prepare for launch in the five sites from mid-next year.

The legislation establishes the Agency as a Commonwealth Authorities and Corporations (CAC) Act body, independent of governments.

This was recommended by the Productivity Commission because of the importance, for an insurance approach, of taking care and support out of the cycle of budgets and elections.
To ensure the Agency is accountable to governments, we will establish a Ministerial Council.

All governments, state, territory and Commonwealth, will be represented on the Ministerial Council.

And this represents a significant point about the scheme we are working to build – it is a national scheme, because each of us, states, territories and the Commonwealth, has an interest in building a scheme that delivers for Australians – all Australians – with disability.

The Agency will be overseen by a Board made up of people with extensive experience in the provision or use of disability services; financial management, governance, and the operation of insurance schemes, as well as an Advisory Council of experts in the lived experience of disability and caring.

A National Scheme

The legislation will establish a framework for a national scheme. Because the level of support you receive shouldn’t depend on where you live, or how you acquired your disability.

I know some of you, after so many years of having your stories go untold or not listened too, still struggle with allowing yourselves to believe that a national scheme is being created. It will be in legislation. And it will be on the ground starting from the middle of next year.

This Government intends to build a national scheme.

Of course, we know for a national scheme to work, we cannot do it alone. That is why we are continuing to work through the Council of Australian Governments on the details of funding and governance for a full scheme.

And I am pleased that all governments – state, territory and federal – are coming together to work constructively towards a full scheme. We already have agreement for a launch in five sites around Australia from the middle of next year.

And I thank my colleagues in the states and territories for the positive work they are doing with us to prepare for launch.
In the Hunter in New South Wales, the Barwon region in Victoria, and in South Australia, Tasmania and the Australian Capital Territory.

The legislation sets out a framework for a national scheme – a framework which will initially operate in these five launch sites.

This framework includes the approach the scheme will take to eligibility, reasonable and necessary supports, and planning – including for carers, compensation and merits review.

The framework will embed the principles agreed to by the Prime Minister and other COAG Ministers earlier this year.

Principles including giving people with disability individual care and support based on their needs. And giving them real choice and control over these supports – meaning more control over their lives. Ending a situation where people aren’t told what support is available, or how to access that support.

Principles that include fostering innovative services that are delivered and coordinated by local people. And importantly – the principle of bringing long-term certainty to the resourcing of disability care and support.

So people with disability can feel secure that they’ll get what they need and deserve over their lifetimes. The scheme will be supported by detailed rules that will allow us to ensure it is flexible enough to incorporate changes as it matures.

Importantly, this will also ensure that we can respond to the experience we gain from the launch sites. This will be invaluable as we continue to work towards a national scheme.

As we have been working to build a scheme, we have been listening to people with disability, their families and their carers and to people who work in the disability sector.

Some of the best knowledge rests with people who live with disability every day.

As I have been travelling around the country to talk to people at the many forums we have held, I’ve been struck by how ready people are to engage on the detail of how a scheme will work, and how it will affect their life at all levels.

I was in Adelaide a few weeks ago, and met with 12 year old Caleb.
He was certain what an NDIS would mean for him.

He told me:

“An NDIS is funding for myself, so I can choose the kinds of things that will help me do the things I want to do.”

And what Caleb wants to do is play basketball, as well as bocce, and he wants a new wheelchair that will help allow him to do this.

Of course, the details of how Caleb’s funding package under an NDIS will best support him to do the things he wants to do will still need to be determined.

And they need to be developed in collaboration with Caleb – and because of his age, with his parents too.

But an NDIS will work for Caleb like this.

The Launch Transition Agency will work with Caleb and his family to develop his goal-based plan – setting out the supports he needs and the funding for those supports. Caleb and his parents will have discussions with a qualified Agency planner to identify his capacities, goals and aspirations.

These will be the starting point for creating a plan that provides supports that are reasonable and necessary for him to achieve those goals and to help him on his way to sporting greatness.

And of course to give him lots of other opportunities to participate in community life.

His parents – as his carers – will also talk to the Agency about any support they might need to help sustain them in their caring role. They will also be able to choose how to manage the funding that accompanies the plan. They might decide they want to choose the organisations that provide him with services and manage the spending to meet Caleb’s needs.

Or they might decide they want a local Agency coordinator to help them manage the funding.
If they want to take on more management of his package as they gain experience in the scheme, they can do that too. And as Caleb grows and his needs and goals change, his supports can change with him. That’s what lifetime care and support means.

And the legislation will help set out how all of this occurs.

I said before that we have been listening hard as we draft the legislation. To the more than 4000 people who have visited the ‘Your Say’ website, where we asked for feedback about definitions of eligibility and what ‘reasonable and necessary’ support might be.

‘Reasonable and necessary’ support is an important part of the NDIS and is the concept that will determine the scope of what the scheme provides.

It means that the scheme will provide a person with disability with what is necessary to achieve their goals and take part in the community, and what is reasonable to expect a scheme to provide.

The current system provides so many people with disability less support than they need – so it’s really important an NDIS changes this. We are listening to the feedback we have received from our advisory group and our expert working groups, who have been discussing design detail and considering relevant research for us.

To members of the National Disability and Carers Alliance, who have also been holding dozens of forums around the country. And what we have heard has already influenced our design of a scheme and the draft legislation. We heard that it was vital that we explicitly included ‘early intervention’ in the definition of eligibility.

Of course, support for early intervention is one of the key ideas behind 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 draft 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. We also received feedback about how best to include mental illness and episodic disabilities in the definition of eligibility.

We know some people have conditions that vary in their severity over time. We are ensuring the scheme will identify and support people to manage the impact this can have on their abilities and need for support. We have also now included reference to psychosocial disability because we heard clearly that this is necessary to properly recognise the impact of mental illness on a person’s social abilities and need for support.

That a person’s condition might be psychiatric but their disability is psychosocial, and what they need is support to function in society – to manage their relationships, their home life and work life.

Just a few examples of how people with lived experiences of disability have given us vital advice on how to make this work. Real, practical definitions in the legislation. So that we all understand what is ahead of us as we continue to work towards a national scheme.

Ongoing consultation

As I said, I intend to release the draft legislation shortly. And we will be seeking further feedback from people with disability, their families and carers and the disability sector.

We will ask the Parliament to refer the legislation to a committee for consideration. We will also continue to work with our colleagues in the states and territories.

On Friday, the Select Council on Disability Reform will meet here in Canberra. This is an important meeting, bringing together the work of people with disability, their families and carers, service providers and officials, on the detailed design of the scheme.

Ministers, from around the country, will come together to consider the elements of the scheme we have been working to develop – things like the planning and assessment process that people will use to develop their individual support package, and the role of local coordination workers in helping people manage their support package.

We are considering the states and territories feedback on the draft legislation. And we need to introduce the Bill to the Parliament before the year is out.

The legislation must be in place at launch, to give people with disability, their families and carers participating in the launch certainty and security. The Agency must be on firm footing while it gets on with the job of building a scheme.

Benefitting around 20,000 people with disability, their families and carers, in five locations around the country – in the ACT, in South Australia, and in Tasmania. In the Hunter region of New South Wales. And in the Barwon region of Victoria.

I know that there has been a lot said and a lot written about political fights with the states about getting this scheme going.

The people who have been crying out in frustration for years deserve to know that their elected representatives can work together to achieve major national reform.

And that’s what we are working – with our partners in the states and territories – to build.
So that by mid-next year thousands people in the five launch sites will begin benefitting from a National Disability Insurance Scheme.

Conclusion

It has been an enormous privilege for me to be able to hear the stories of so many people who have been waiting too long for this reform. I know that I will continue to hear from people with disability, their families and their carers as we continue to build a National Disability Insurance Scheme. I can assure you that this Government will continue to listen and to make sure that what you tell us continues to shape our approach.