NEALE:

I was on a friend's houseboat at the time and dived off the houseboat into the water.

RUBY:

Neale Radley was on a day off from his job as a truck driver, enjoying the sun with some friends in regional Victoria.

He looked off the side of the houseboat – no branches, the water was clear. He decided to jump. What he hadn’t seen was a sandbar.

NEALE:

When I passed out in the water, my friends, I think, thought I was mucking around and trying to hold my breath, then realised that I wasn't. They dragged me out of the water and they got the water out of my stomach. I can remember that I was semi-conscious while I was going through all that. And, I remember when it really hit home was when the ambulance came there and asked me whether I could move my hands or toes. And then I realised that nothing was moving and yeah, that really hit home, you know, then I thought, well, I’ve really done something big this time, yeah.

RUBY:

Neale remembers being carried into a chopper, the door closing and the chopper taking off. After that, his memory goes blank.

NEALE:

I woke up one day in ICU and you got all these machines beeping and stuff like that, and it was a bit of a shock. You’re just coming to the realisation that your whole life is going to change. You don't realise at the time how much it's going to change, but you know it's never going to be the same as what it was, that's for sure.

RUBY:

Neale was in the ICU for eight weeks. It was here he was told he’d broken his neck. He later learned he would live the rest of his life as a high needs quadriplegic.

He realised he needed somewhere to live, and his options were limited.

NEALE:

My mum and dad are in their 80s. If they'd been a bit younger, they probably would have looked after me, but it was too much to ask for them and that. So, you know, because the NDIS wasn't in then I virtually slipped through the cracks and there was nothing for me. So aged care was about the only choice that I had.

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RUBY:

Neale was in his early 40 and suddenly, he was dealing with the prospect of living the rest of his life in aged care.

There are currently close to 1500 younger people with disabilities living in aged care across Australia. The federal government wants to pass a law that could see that number rise.

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

Today, Neale Radley on the reality of living in aged care and The Saturday Paper's senior reporter Rick Morton on the plan that might make the problem worse.

It’s Tuesday August 13.

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RUBY:

Neale, when it became clear that you would need to move into aged care after your accident, what was your first thought?

NEALE:

Well, I thought basically if someone said to you what would be the worst thing that could happen to you, I'd probably say that. Mainly because I was such an independent, active person. It was more you had to sort of come to grips with that this was your life now.

From straight away, you really felt like you didn't fit. You're a young person, and, you know, just examples like the music you listen to is not the same. In the end, I sort of shut off from being friends with a lot of them because they’re getting older in life and sometimes they’re here and the next day gone. You just felt like you always wanted to get out.

RUBY:

Can you tell me about your room? About your life there?

NEALE:

Well, I couldn't really open the doors myself because there's not an automatic door and there's a handle on it and that. And after a while, I sort of felt like, you know, I was virtually in a cell because I couldn't get out unless I rang the buzzer and got let out. Sometimes they would leave the door open, but at night it was closed. I couldn't get out if I wanted to.

I had a few times where it wasn't their fault, a few people with dementia come into your room and you're sort of thinking, well, without that buzzer, I'm pretty much helpless here. I can't get out of bed and run away. I can't do it. So it's the lack of freedom, the lack of consistency and reliability in care. Yeah, it wasn't good, that's for sure and it definitely over time wears you down and plays on your mental health. It doesn't matter how strong and how stubborn you are, it's gonna get to you sooner or later. And, yeah, the longer you stay there, probably the worse it's going to get, I think, yeah.

RUBY:

So Rick, Neale spent four years of his life in a nursing home, but he is far from alone and being forced into that position. Tell me what we know about how common this is.

RICK:

It used to be a lot more common for, you know, a young person under the age of 65 with pretty profound disabilities to be stuck living in a nursing home or what we call a residential aged care facility, particularly since the closure of large scale disability institutions. You know, suddenly these big, hulking, awful institutions were closed and there was really nowhere left for people with disabilities to live. And nursing homes became literally a dumping ground to the point where, you know, people just gave up trying to find a solution to, you know, where these people could live. And you know, just a few years ago, there were more than 6000 people under the age of 65 who had disabilities, but who did not have an ageing related illness or condition, who were in residential aged care. They should have had somewhere else to go, but they didn't. And pretty much since that peak of around 6000, 7000 people, we've been trying really hard to get them out of there.

RUBY:

So there has been this push to get young people out of nursing homes for years. The Royal Commission into aged care explicitly called for that. How have governments responded?

RICK:

When the Morrison government finally responded to that aged care royal commission report, the interim report in particular, they kind of come up with an implementation plan and there were areas of immediate action, and there were kind of stage steps where initially there were meant to basically get rid of everyone under the age of 45 to start off with and to stop new people entering aged care if they were under the age of 65. And then finally make sure that from next year no one is living there that shouldn't be. We have already failed the first two of those steps, and the Albanese government has inherited these targets and they're now in government and they're about to fail the third and final hurdle.

RUBY:

Right. So what is it that's going on here then, Rick, if there is this consensus among commissioners, ministers, departments, that this is something that shouldn't happen, young people just shouldn't be in nursing homes. Yet it continues. So why is that?

RICK:

I mean, partly it's this game of institutional buck shoving. So for a long time there wasn't really anywhere else to go and the funding had dried up. But then along comes the National Disability Insurance Scheme, right? And out of everyone, people with profound disabilities and long term, round the clock physical and mental and intellectual care needs were the people who were supposed to have been looked after by the National Disability Insurance Scheme, and the NDIS just went real slow. They dragged their heels and they didn't want to touch this issue because they were too busy trying to sort out everything else about the scheme. And of course, they got hauled over the coals by the Aged Care Royal Commission by saying, you know, we’ve got this semi commitment to get people out of nursing homes and you've done nothing about it.
But it's not just the National Insurance Scheme. You've got state and territory governments who themselves have played silly buggers, I think, with the NDIS in the early stages of the scheme, who themselves have responsibility for building houses and providing housing.

But with the clarion call of the Aged Care Royal Commission, we finally had not just bipartisan support for this, but also a pretty clear indicator of what needed to happen. And the numbers were going down not nearly as fast as they should have been. But, you know, the last time I checked, there were about 1400 people under the age of 65 in nursing homes across the country as of the end of December. But people are still going in and there were 44, I think, that went into nursing homes in just in the last quarter from September to December 2023. So the practice hasn't stopped, it hasn't gone away.

But we were making some progress and that seems to now be unravelling.

RUBY:

Coming up after the break – the new law that could see even more young people end up in aged care.

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RUBY:

Rick, you’ve been looking into changes the federal government is planning to the Aged Care Act. Tell me what you’ve uncovered?

RICK:

It has a new eligibility criteria for someone who can go into a nursing home or receive home care services under the Aged Care Act. And the key part of this eligibility criteria is that you can have an assessment made if you are under the age of 65 but older than the age of 50, if you are homeless or at risk of being homeless.

The problem with that is that there is no definition in this act about what constitutes homelessness and people with disabilities who have been put into hospital or who do not have the right funded support for them to live in the community anymore. Those people will be classed as homeless or at risk of being homeless.

And so we are now introducing, for the first time ever, an explicit clause in the federal legislation that governs aged care, which will actually codify in legislation pretty much the same thing that happened to Neale happening to a bunch of people who are aged between 50 and 65.

If you're a young person under the age of 50, you have to show all this evidence that you've tried every single service system, that they've rejected you. You have to put it in writing, and basically you have to show evidence that there is nowhere else for this person to go. But if you're over the age of 50 and under the age of 65 and you're at risk of homelessness, then all you have to show or all someone who wants to get rid of you from their services has to show before they can put you in a nursing home, is that you've been informed of other options.

So essentially, and I've been talking to people from the Young People in Nursing Homes National Alliance, Doctor Bronwyn Morkham in particular, who says that this is now legislating bad practice and this will actually unwind decades of effort to get people out of nursing homes. And over the next decade, we'll possibly see an uptick in the numbers because exemptions in legislation are fraught. And this is poorly designed, poorly drafted, poorly written, and the government doesn't seem to have responded to that key criticism.

RUBY:

And so what is the federal government saying about why it's putting this into the legislation?

RICK:

To be honest, I didn't really understand their response to me when I put questions in. They said that, you know, this new legislation is an example of how they're taking the next step to making sure that young people can't be in nursing homes. And what they say, quite rightly, and I wish they'd recognise this across the government when it comes to the stress of being on the low poverty level welfare payments. But they say that someone who is homeless or at risk of homelessness, who's aged over 50, in particular, the stress of living like that can prematurely age them. And that's the reason they say that they're including this particular eligibility exemption in the Aged Care Act, so that these people can go into a nursing home if they're sleeping rough or they've got nowhere else to go. That's great for people who are homeless. It's not great for someone who can be excused away by the NDIS or state and territory housing departments.

RUBY:

What does it say to you, Rick, that after multiple royal commissions, which have had firsthand testimony presented by people like Neale, who spoke to how diminished his life was by living in this way, how we're now in this situation where it seems like everything that people who have been in nursing homes are saying about their needs is being ignored.

RICK:

You know, if there wasn't an NDIS, you could find yourself having an argument saying, well, maybe there's nowhere else. Maybe there is nowhere else. It's not good. And maybe we should find somewhere else, but we don't have an NDIS. But we do, and we have had it for a decade. And if it can't do this job, what's the point of any of it?

And I feel like this is a cohort of people, amongst a cohort of people that are really profoundly disabled people. Who are already part of the broader disability community, who are often ignored. Who have decisions made about them when very few people are taking notice. And the government might think that not enough people are going to say anything about it to stop them from making a bad decision.

RUBY:

Rick, thank you for your time.

RICK:

Thanks, Ruby, I appreciate it.

RUBY:

After four years in aged care, Neale found a way out. He’s now living in his own place. He can come and go as he wishes and has 24 hour care.

NEALE:

Oh, I love life now, yeah. It's great. It’s like I said, it's about as close I think as what you could get to living without an injury. As far as the choices and the freedom you have, you can go anywhere. You can pretty much do anything you can. It makes you feel a whole lot better. You feel like you got a purpose now that, you know, and I've also helped a few advocate groups out as well. I think I've got a little bit to give hopefully.

But where I am now is pretty good. I want to keep it as long as I can, that's for sure.

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RUBY:

Also in the news today,

Leading gambling reform advocate, Tim Costello, says Labor risks an internal rebellion if it waters down gambling reforms.

A 2022 inquiry into the harms of online gambling called for a total ban on gambling ads, but reports suggest the Albanese government is considering a partial ban.

Mr Costello, who leads the Alliance for Gambling Reform, says he’s spoken with several Labor MPs who are pressuring the government to deliver on the inquiry's recommendations.

And

The UN says Israel has forcibly evacuated roughly 75,000 Palestinians from Khan Younis, as it again expands operations into the region.

The news comes as Hamas is calling on Qatari, Egyptian and US mediators to implement a ceasefire plan that was put forward by US President Joe Biden.

I’m Ruby Jones. This is 7am.

Thanks for listening.

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