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The other side of the glass

Jul 7, 2020 • 15m 38s

Seven years after the NDIS was established, thousands of young people are still being forced to live in aged-care homes.

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The other side of the glass

259 • Jul 7, 2020

The other side of the glass

RUBY:

From Schwartz Media, I’m Ruby Jones, this is 7am.

Thousands of young people with disabilities are living in aged-care homes across the country.

The NDIS promised to change this… but seven years on, it’s been revealed only five per cent of people have been able to get out.

Today, Rick Morton on the young people trapped in the aged-care system.


RUBY:

So, Rick, when we're talking about young people who are in aged care homes. What is that situation like?

RICK:

They're not meant to be there.

These nursing homes are not built for young people. In fact, they're set up specifically to look after the medical and social care needs of older Australians because that's what the system does. But young people with disabilities end up there because there's literally nowhere else for them to go.

RUBY:

Rick Morton is a senior reporter at The Saturday Paper.

RICK:

So, you know, oftentimes they're much younger than the rest of the aged care residents. You know, I covered an inquiry and I think it is 2014 or 2015. And there was one young man in his 30s who told the inquiry they just didn't bother making friends anymore because they kept dying.

And that kind of gets to the heart of it, but also from a medical and a care point of view, it's not a prime environment to live a fulfilled life with access to the community. You are kind of shut away. And it's particularly egregious for younger people who have their whole lives ahead of them and face living in these places for decades.

RUBY:

Mm hmm. They must feel like it will be the rest of their life?

RICK:

Well, in some cases, it has been. You know, people have died in there waiting for somewhere else to go. Or, they've turned 65 - so they never got the chance to do what you or I get to do, which is to kind of live with their friends or family partners.

Oftentimes, they do have people they could live with. If only there was a funding stream or mechanism that would allow them to get the support they need so they could do it and they just don't. So it's almost like they've been banished, like they're kind of constantly on the other side of this frosted glass, looking out, and there's no one there.

RUBY:

And Rick, how long has this been going on for?

RICK:

I mean, this is one of the age old problems in Australian policy. Since the 2000s and the Howard government, we've had inquiry after inquiry. There was another one during the early days of the Coalition government, Tony Abbott's government.

So, you know, when the NDIS was first starting to be brainstormed, this particular group, when you think about the people with the most profound disabilities and the most profound needs, the NDIS was like - well, this is the ticket, this is how we do this. And, you know, that was seven years ago when it began and we're still here.

RUBY:

So the NDIS was supposed to change things and reduce the number of young people in aged care. What was the plan?

RICK:

Well, it was the great beacon of hope, right.

Archival tape -- unknown:

Disability Care Australia will ensure Sophie and Sandy and so many other young people with disability will have the security and dignity every Australian deserves.

RICK:

It's all ancient history now. But there was a lot of debate at the time about whether the NDIS was a good idea. And certainly it took a lot of convincing to get a bit of political leverage, actually, to get Tony Abbott while he was opposition leader to support it.

Archival tape -- unknown:

Disability Care starts in seven weeks time and there will be no turning back. I commend this bill to the house.

RICK:

One of the key arguments that was made was that this program could be a way to finally solve that protracted problem of young people in nursing homes. They didn't belong there. Everyone agreed they didn't belong there. No one had done anything about it. And so as a way to sell the NDIS, among many other things, advocates and political leaders were like, this is how we do it.

And so the NDIS was, you know, this extra bucket of money. But also this extra tool for flexibility, choice and control. And it was gonna get them out.

And then, you know, I remember writing about the housing policy - they call it specialist disability accommodation - in 2014 and kind of people were saying ‘where is it? Where is it? We were meant to have it by now’ - and it was delayed and delayed and delayed. And, you know, the royal commission last year, the Aged Care Royal Commission, the counsel assisting, just tore strips off the NDIA.

Archival tape -- Royal Commission:

It’s just unclear to me, with respect Ms Rundle, why that didn’t happen much much earlier...

RICK:

Saying you knew that you had to get specialist disability accommodation off the ground.

Archival tape -- Rundle:

I’m really sorry, I can’t answer that-

Archival tape -- Royal Commission:

Do you agree that as a matter of commonsense, just point out obviously in the face of the projected shortfall from 2011 as ways to mitigate or alleviate that?

Archival tape -- Rundle:

I agree that in hindsight...

RICK:

And it really only began happening with full gusto in early 2019.

So we've waited years for this point, and now finally we get some numbers from the NDIA, the agency in charge of the NDIS, about how many people, young people in nursing homes have been freed.

And across the lifetime, seven years of this scheme. We finally find out that it's between 180 and 320 people who were likely moved out of aged care.

RUBY:

So if 320 people have been able to leave - how many young people are still living in aged care?

RICK:

Yeah, that's a good question, because so in December last year, there were 5200 young people with disabilities in aged care still. And I think it was actually down from a little over 6000 in the middle of 2017.

Archival tape -- Scott Morrison:

One of my first acts as Prime Minister was to call a Royal Commission into the aged care sector. And also to look specifically at the issues of young Australians who find themselves in aged care facilities around the country.

RICK:

Now, if you read the most recent kind of update from the NDIA, which was put out in May, they recorded this as an 18 percent decrease in the number of young people living in nursing homes.

Archival tape -- Scott Morrison:

Already, we have seen the number of young people in aged care facilities fall from 6287 to 5606 on the most recent information...

RICK:

And that's actually quite misleading because they didn't leave nursing homes. These people. There is about 1050 people in the decreased numbers - they didn't leave nursing homes, they just turned 65.

So then they are no longer counted as young people. Some of them did die waiting, but they are in the minority. Most of the times you just wait long enough and they age out.

So, you know, when you look at it, young people with disabilities are caught at the intersection of two enormous social programs. You know, you've got the aged care system, And the NDIS, And both of them are now the subject of royal commissions.

RUBY:

We'll be back in a moment.

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RUBY:

Rick, we're talking about the thousands of young people with disabilities in nursing homes. We've talked a bit about the NDIS, but the aged care system has some responsibility for this, too.

RICK:

It does. And, you know, the aged care commission looked at this issue. And they released their interim report in October last year, and it was absolutely damning.

It said there had been a failure to develop a proper understanding of the circumstances and needs of younger people in residential aged care. And they were going on to say, you know, that combined with the continued entry of younger people into residential aged care at undiminished rates indicated a lack of sufficient interest by the government in the plight of these young people. The report said there was a level of complacency.

Archival tape -- reporter:

A scathing assessment served up to one of the federal health department’s senior officials.

Archival tape -- unknown:

I put it to you Dr Hartland that the current system is at best a national embarrassment, and at worst a national disgrace.

RICK:

So it ended with this call to action saying Australia now finds itself with a human rights issue that is costing people their independence, dignity and wellbeing.

Archival tape -- unknown:

How do you reconcile long-term placement of younger people with disabilities in residential aged care with our human rights obligations concerning the rights of people with disabilities to live independently in the community.

RICK:

Action must be swift. It must be thorough and it must be considered.

Archival tape -- unknown:

It’s put the government on notice, it’s put the industry on notice, but I think as importantly as anything it’s put the entire industry on notice.

RICK:

You know, the explosive testimony in this report and that sparked those words kind of put a bomb under the Australian government and led to them completely redrawing what was already a lackluster action plan to tackle the issue.

RUBY:

When we say ‘lack of sufficient interest,’ are we saying that the government just doesn't really care?

RICK:

Yes, I mean, if you measure care in terms of action, the government could have done something about this. They could have funded it for, you know, the two decades prior to this moment and they didn't. And so I think the only kind of takeaway you can get from that is that they didn't care enough to actually do anything about it.

Thank God they've now redrawn this plan and it promises that no young person with a disability will be living in residential aged care within five years. So by 2025.

Archival tape -- Scott Morrison:

And there will be additional funds - just under 5 million - to help meet new targets to remove younger people with disabilities from residential aged care...

RUBY:

Right. So there's a plan and a promise from the federal government. But what happens in the meantime in the next five years?

RICK:

Look, I want to be fair. I was talking to some people at the NDIS and they were saying, look, after all these years of inaction, the NDIS really is the best hope. It's the best opportunity in government to actually make a lasting impact here.

And the NDIS minister, Stuart Robert, has made a couple of announcements that are really important. At the end of last year, they announced a kind of a transitional medium term accommodation option for people who need a place to live while they wait for a permanent home to be built or modified. So a medium term accommodation option is actually a really important middle step.

And last month, Stuart Robert also relaxed the rules on using permanent housing funding so that’s the specialist disability accommodation funding in the NDIS to allow young people to live with their family, their partners or even their friends, because they want to do that in many cases. And they could do that quite happily if they had the support to do it.

Archival tape -- unknown:

We’ll be now joined by minister Roberts for the grand opening of the Ability Apartments Guilford...

RICK:

The reality of change is slow, but the anger from people who have been affected by this has always been directed at just the sheer lethargy of the agency. While admittedly juggling a whole bunch of different balls in the air at the one time. We had seven years to get to this point. They should have been working on specialist disability accommodation earlier because there's a gap of at least, I think, 12,000 to 20,000 residences that need to be built to allow people to live in the community.

So, yeah, we've had time and people are tired of waiting.

RUBY:

And is part of the problem, until now, that people just aren’t interested enough in this?

RICK:

Yeah, and I think if there's a way that you want to quantify that. I mean, up until literally in March, we didn't even know how many people were in nursing homes who had managed to get out like the NDIS, just didn’t count them.

And aged care in particular is a system that doesn't get a lot of insight. You know, I remember when the royal commission was first called, I think something close to 45 percent of older people, or all people, in nursing homes don't even get a single visitor from family or relatives in any given year.

So you're relying on advocates and people who don't don't even know necessarily that these young people are there because there's such opaque institutions and you can't change what you can't see.

So we need to kind of elevate them, I think, in the spotlight to make sure that there is change and to make sure that it's followed up, because sitting there in that kind of silence, I imagine, would be really heartbreaking.

RUBY:

Rick, thank you so much for your time today.

RICK:

Thanks, Ruby.

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RUBY:

Also in the news:

NSW has closed its border with Victoria, after the spike in new coronavirus cases recorded in Melbourne.

The decision was made after advice from the state's chief health officer.

The NSW police commissioner said he would seek extra powers to turn away people at the border.

And investors who are owed more than owed $2 billion by Virgin Australia have interjected in a takeover bid for the airline, led by Bain Capital.

The group of bondholders say the process has been unacceptable and the deal with Bain would stop them voting on alternatives at a creditors meeting next month.

I’m Ruby Jones. This is 7am. See you tomorrow.

There are thousands of young people in aged-care homes across Australia, because they don’t have their own facilities. The NDIS was meant to solve this, but seven years on only a few hundred young people have got out.

Guest: Senior reporter for The Saturday Paper Rick Morton.

Background reading:

Young people with disabilities still living in aged care in The Saturday Paper
The Saturday Paper
The Monthly

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7am is a daily show from The Monthly and The Saturday Paper. It’s produced by Ruby Schwartz, Atticus Bastow, and Michelle Macklem.

Elle Marsh is our features and field producer, in a position supported by the Judith Neilson Institute for Journalism and Ideas.

Brian Campeau mixes the show. Our editor is Osman Faruqi. Erik Jensen is our editor-in-chief.
Our theme music is by Ned Beckley and Josh Hogan of Envelope Audio.

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259: The other side of the glass