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01 July 2022

Good morning, everybody. My name is Bill Shorten. I'm the Federal Minister for the National Disability Insurance Scheme amongst other matters.

I'd like to acknowledge that this convention centre, this expo for people with disability and service providers and their carers, is being held on Gadigal land, I pay my respects to the Gadigal people of the Eora nation.

I also just first of all want to acknowledge all of the people with disability who are here, and all of the people who care for them, provide services and who love them.

I'm here today to make a few remarks about the National Disability Insurance Scheme. But I always like to give a talk by starting off with a little bit of history.

Ten years ago, there was a decision, finally after several years of grassroots campaigning to create a National Disability Insurance Scheme. In fact, it was on this day, only nine years ago in four trial sites across Australia, under then Prime Minister Julia Gillard that the NDIS started to deliver its work.

But I want to take you back to a little bit more history just in those years before the Scheme starting. Kevin Rudd got elected at the end of 2007, and he made me the Junior Minister for Disabilities.

And I thought as a union rep, which is the job I used to do before I went into Parliament, that I'd seen unfair treatment, and sometimes I had.

But in 2008, and 2009, nothing prepared me for witnessing the systemic, second class exile in our own lucky country of people with disability, profoundly severely impaired people in particular, and their carers.

And what used to happen in 2008, 2009, 2010 is that the only way you could get resources and support was you had to be in crisis. And the more crisis you got into, then you would probably get more support.

And what I discovered is that people with disability doing amazing things and their families, but they are often treated as invisible in the rest of the national political debate. Never on the media, except when it was crisis. Never on the media except for remarkable charity efforts.

So there was this almost fantasy view that people with disability are different. My diagnosis, though, drew a different conclusion. Disability is a fact of life, you can acquire it at birth. In the genetic lottery, you can acquire it in the blink of an eye on a country road, late at night driving. You can acquire it just for the onset of ageing.

Disability is any one of us at any time.

The real problem with disability in Australia is the lack of money, and a lack of power. You might argue that's the problem generally in life, but disability was no exception.

So we got to thinking, working with grassroots activists, mums, those carers in their 80s up at midnight, anxious for who will look after their adult child, the tired and exhausted disability support workers, people with disability, time poor, just trying to make ends meet.

And each individual on their own didn't have a lot of power, but together… together, we became something different, a lot more significant. And with Prime Minister Julia Gillard and my colleague, Jenny Macklin, the Labor Minister and myself and thousands of people; service providers, unions, employers, people with disability first and foremost.

We organised around one idea, a National Disability Insurance Scheme.

The notion of modest packages of individual support would allow people with disability to be consumers, not just treated as charity. The idea that if you could pull together a significant enough amount of money in totality, it will attract new business. It'll mean that disability carers working in the sector can make a living. It was a rising tide to lift all boats – there was a great idea.

And in 2022, when we look at the wasteland which has too often been Australian politics since the start of this century, the NDIS is an exception. It's genuine change, grassroots change, and a bit of political change.

But now there's been an election. Anthony Albanese has been elected Prime Minister, and we have come back into Government. And I've got the privilege to be coming back to the thing I'm probably most proud of in politics, which is the NDIS.

Well, I'm gravely concerned that the NDIS, which we wanted to create, has gone off track. There's a lot of good things happening in it… no question, which is great, a lot of success stories.

But I am gravely worried that for people working to get their packages on the NDIS, it's become a second full time job. This is wrong.

I'm gravely worried as I spoke to a very nice lady and her mum here earlier just as coming up here. She looks after her mum in her 60s, who had a stroke. She's looked after her since the age of four. Every year she has to, on behalf of her and her mother, have that anxiety that when one package finishes, they have to prove again from the start, that she hasn't gotten any better. The stroke is the stroke is the stroke, and the consequences of the consequences are the consequences.

But this is not fair.

We set the Scheme up to relieve the midnight anxiety of ageing carers who will look after their adult child. We set up the Scheme to get people with profound, severe impairment choice and control. And instead it’s becoming a bureaucratic maze, a nightmare.

So now we formed Government. The very first thing that we've done; is I've met with the medical experts, with stakeholders, with government agencies to make sure that COVID preparations are up to scratch.

COVID has been a nightmare for people with disability. You know, some people act as if it's over and the hoons who carry on and, you know, bag the vaccines and all that. But for a lot of other people. They still can't leave their home, they have had workforce shortages, isolation, it is scary. So we want to make sure that never again are people with disability at the back of the queue.

But the next thing we've been doing is we want to get profoundly disabled people out of the hospital beds into the proper accommodation. We want to stop the log jam, the traffic jam.

We also want to tackle the legacy cases in the Administrative Appeals Tribunal. Four and a half thousand people on the NDIS are currently in court. They had to take the government to court to sort out home mods, assistive technology, unfair cuts, massive cuts in their packages. So we're going to blitz those waiting lists, because you shouldn't have to have a lawyer to sort out a government package.

We're also starting to talk about how we get pricing right. We've already announced increases in the Price Guide, which will make sure that disability carers get their pay rise, but it doesn't take away from the number of hours a participant has in resources to allocate.

And we're going to have to have a conversation about making sure that this big field of unregistered providers have minimum standards of quality, that they can't just send in invoices and no one ever checks them.

Underpinning all of this has to be co-design with people with disability.

There's a lot of good people working in the disability agency, in the service providers and the advocates, the carers, people with disability, they are all doing great things. But at the moment, the way that we all talk to each other is not working properly.

The fact that when you talk to a planner to set up your plan, if you ring back in six months, they're gone. And it's someone else.

The fact that when you talk to your Local Area Coordinator, some of them are brilliant, but some of them are very new on the job.

The fact that when we have complex cases, we're only looking at a person's primary diagnosis. The point about impairment is, it's not just functional impairment, it's your environment.

And the point about the NDIS is the third leg to this, which is; “how about your dreams?”

I just want to promise you that there's a lot to be done. We want to tackle some of the issues in the ‘too hard’ basket. The court cases, the housing blockages for approval, the hospital beds being blocked up, the people in aged care who would like to have an alternative.

We want to talk about how we train up the workforce, how the workforce is properly remunerated, and we want accountability. So the shonkies, the people ripping off both people with disabilities and the taxpayers get their comeuppance.

But all of this is underpinned by one proposition; we seek to restore trust.

We seek to make the NDIS the best scheme in the world, because only when we have the best deal for people with disability in the world, only then can we relieve that midnight anxiety.

This country shouldn't be just measured by the number of billionaires, the number of gold medals. It should be measured by how we treat the most vulnerable and most powerless in our nation.

The NDIS is a test of the nation that we want to see in the mirror.

It is a test of the nation we want our kids to see. Disability is a fact of life. But if we put barriers in the path of those with disability, we're actually saying to our kids, that we're not as smart as we think we are. We're saying to our grandkids, we're not as generous as we think we are.

So friends, it's great to be here with you. It's great you're doing this, the stories, the connections are so important.

The good news needs to be heard.

The good news must be heard.

But most of all, all that I want for people with disability, for the people who love them, for the people who work with them is, hope.

Hope is what gets us out of bed.

Hope is what drives our dreams.

The NDIS should be a vehicle of hope. Together, let's put the hope back into the NDIS.

Thank you very much for listening.