She Was The Watchdog for the Sandwich Generation | Natalie Siegel-Brown, Former Inspector General for Aged Care | Club Sandwich

Thank you. It's wonderful to be here.

Well, Sandwich generation is potentially the best way to frame it. I have an 11 year old child, I have aging parents and, and trying to do a part time role for a UN agency while being the Inspector General of Aged care had me travelling all the time and giving no time for anyone. And probably like many of your listeners, incredibly plagued with guilt about what I wasn't giving to my family. And I knew very squarely where my responsibilities lay. But also satisfaction in life comes from being there for those people. And as many of your listeners would know, once your child turns 11, there's not a whole lot of time you got left that they want to hang out with you. So I wanted to make sure I took advantage of that. I would also have to say that the role of holding the government to account for the aged care system could never be important than right now. And I was attempting to do the job four days a week while I did my international work and it just was not feasible when there was so much that needed to be done. It is a time of great reform and great opportunity, but unfortunately, the number of unintended consequences and potentially perverse outcomes that are Arising from the way the changes are being implemented mean that there needs to be somebody more vigilant and more attentive than ever to those things.

think about it, with aged care, the system actually very heavily relies on the sandwich generation. But the way in which the system has been designed seems to fail to position us anywhere within that. There are so many things going on at the moment. We used to have a society where every player in society had a responsibility to care for older people. And in fact, older people were not considered to be the drain on society that I think they are perceived to be now. Older people were still considered to have a contribution to make. And one of the saddest things I'm observing is that there's this collective perception that as we age, we lose our identity and we are a physical body that is just to be maintained. And in many ways I see an aged care system that recognises through law that we have this full, valuable life to live. But in practice, in implementation, it feels very much oriented towards just this flat we will meet your physical needs and everything beyond that is your responsibility, particularly in the supported home space. What that means for the sandwich generation is that there is no attention given to where children, whether they be biological or otherwise loved ones, fit within that ecosystem. Actually, so much of care runs off love, off the involuntary feelings that you have towards wanting to care for somebody, and indeed off that volunteerism to people in your community. As soon as I finish this podcast, I'm going to go and visit my elderly neighbor. Why not? Out of obligation. Because I love him and these are the things that keep people well and functioning. And a system that doesn't recognize that that is such a critical ingredient can not only to create incentives to facilitate that happening, but indeed can create consequences that undermine it. So when we think about the fact that almost everybody wants to age in their home, and those of us in the sandwich generation mostly want our parents to age at home, yet we have a system that delays care, and in that delay the decline increases. It makes the job impossible for that sandwich generation, that sandwich generation that we're relying on to deliver that care.

That's exactly right. And this is what I argued fairly fervently while I was Inspector General. Let's say for a minute that we didn't care about older people and let's say for a minute that we didn't care about the sandwich generation or carers. And let's not forget that there are many carers who are partners of people who need support and they themselves need support.

That's exactly right. Let's put all of that aside and just think about the dollars. It becomes a much more expensive system when by delaying the delivery of care at home, people decline quicker and therefore unnecessarily or prematurely end up in residential aged care. So let's just take the stats for a minute. It costs between 30 and $40,000 on average to keep somebody ageing well at home a year. A year to the taxpayer once they receive their support. For a person staying in residential aged care, the cost to the taxpayer sits at around $123,000 once you take into account ANAC and the Hotelling supplement. These are all the government jargon for the. For the funding. So you can see one cost three or four times the other. I can see that when you're looking at average wait times of around a year for care. Let's not forget most people come to the assessment process in desperate need at that time. So if you're coming in desperation and you've got a year's wait, chances are decline will be quick.

They can't wait that year. So what happens? People give up or people end up in hospital and then the next step is residential aged care. So if I look at it from the government's perspective, what I see is that we're paying more money for accelerated decline. So we have a system that is failing to help people early enough and that has a very human consequence and we care about that. The new Aged Care act is based entirely on compassion and kindness and dignity. Economically we're probably undermining our own objectives and the system will become unsustainable if everybody's declining so quickly. They need residential aged care. The constant refrain that you'll hear in the news from government is we are never going to have enough residential aged care beds to keep up with demand.

That's right, that's right. So if you think about it, support at home. And there's another program called chsp, the Commonwealth Home Support Program that is designed to be even the step before support at home. Those two programs are effectively your core preventative infrastructure. They are the things that drop the demand for the residential aged care system and they are the things that keep our sandwich generation able to support mum and dad longer at home. It's devastating that process often of having to put a loved one into residential aged care. It's a huge psychological step for the older person. But it also is for children who often experience a lot of guilt at the fact that they feel like they have to give up.

Exactly right. And when we have a society that's now moved to these assumptions around what we'll do with our career and if you have a career break, can you come back to your career? If I'm with mum, am I giving enough time to my child? What happens is your self care falls off the back of the truck, doesn't it?

There you go.

Which is devastating. But how many times do we hear that story in our community?

When in fact actually it's the love and care of our sandwich generation and our carers that make so much of this system work and we need to support them. And I've often argued that if we had, it's in government policy terms we call it a theory of change. So if we started from the fact that we wanted an aged care system as it's described in the new aged care law, Full of dignity, full of compassion, full of kindness. An aged care system that actually prioritises an older person's ability to live in their community, in place, living a fulfilling life. I think what we would have done is built a very different system that thinks about carers and the sandwich generation very squarely about their role within that. How we support them, how could we have done that?

I'll start with where, where we've ended up and then I'll give you some comparisons as to how it could have been designed. So, prior to the big Royal commission into aged care that many of you will be familiar with, we had an aged care system that was not really so much based on markets. There was an element of CO payments and things like that that those of you who are dealing with the aged care system would be familiar with. But it was still very much a system that was aimed at regulating providers. It wasn't a system that said, what are the incentives and disincentives? What's the funding mechanisms? What's the regulatory system that would deliver on a system that is truly about ageing in place, keeping people supported at home? I dare say one of the first things we' is how we ensure there is no wait time for care and that the fundamental aim of all of our systems, whether it be the regulation or the administration or the funding, that they are all aimed at ensuring that we halt decline as much as we can and in fact, remember that people can actually recover some capability when they've lost it. Reablement is the term that the allied health sector uses.

We haven't done that. What we've done is we've doubled down on that old rigid system that was about regulating providers. We've tweaked some of the old processes, but we haven't fundamentally changed the system we had. Even though the goal of what we're trying to do with aged care is fundamentally different.

That's absolutely right. So if we did start from how do we gear the incentives and disincentives? What we would have done is Put the carers front and centre of that and saying, if these guys are absolutely quintessential to people staying at home, what are the things we need to incentivise across the government system and indeed across the private sector to be able to facilitate them to feel that they can sustainably and satisfactorily deliver that care. And so that could be a range of different initiatives that even go beyond the aged care system itself. So if I look across the world, there are systems who've started from that paradigm and worked backwards. Singapore is a primary example. So in Singapore they've had an ageing strategy in place now for 11 or 12 years. It is very wide ranging. It ensures that older people live in communities surrounded by young people who can help young people who might, on their way home from work, collect medication from the chemist for an older person, receive a small bonus from the government of five or ten dollars. There are different things built in across the system. Then if I say, okay, well, Singapore's a very different system to us. Have a look at Denmark. Denmark has an aged care system that has pretty much the same ingredients as ours around support at home and around that chsp, that Commonwealth Home Support Program that I mentioned. They started from the proposition of we cannot make residential aged care the destiny of everybody in the system. What can we do to reduce, decline and keep people happily ageing in place? They have a population that is ageing at a rate equivalent to or greater than our own. But the numbers of people in residential aged care have dropped. So while you will often hear in the media, we'd need to build a residential aged care facility every three days to meet the demand, the theirs has gone in reverse.

Why?

Because they've frontloaded the system all in relation to providing that support at home and monitor, which is what we're meant to be doing, which is what we're meant to be doing. But indeed, you don't have to reapply for assessment when you think that things might be heading downhill. And let's be honest, well, I'm going to convey my own and project my own experience here. It is hard for a parent to admit that things are going downhill. It is hard for a kid to say to their parent, hey, things aren't going right. Then to get them to the point where we say, hey, I think we're gonna need to be reassessed for more care. That is a long, arduous process and we know that waiting to get that assessment takes a long time. In Denmark, there are people constantly moving between the homes to ensure that people's decline hasn't accelerated, to keep an eye on whether the level of care is right. So it takes all of that dependency and weight out of it and that has a huge impact as.

Correct. Now you might say, well, Denmark, the Nordics.

They do everything right. They're this complete unicorn. Not true. We actually have a system like that operating far from people's view here in Australia. It's called the Veterans Care nursing program and despite the fact it has the word nursing in it, it's not purely about nursing. It is a system that runs very similarly and it is very much premised on social support within the community. We know that social engagement, the veterans

But for parent care it is exceptional.

There's an interesting system in Thailand at the moment in the Northern region which I read about not so long ago where they have these stunning resorts. Now bear in mind you have to be of means to be able to obtain this. Where I read about a couple from Adelaide where his decline was very significant and he was going to have to go into residential aged care. It was far away from their home. It would have been very difficult for mum to go and visit dad and they wanted to stay together and she obviously wasn't in a position to want to go into residential aged care or needing of aged care. These resorts in Thailand enable the couple to live together in a beautiful unit inside the resort. He receives all the 24 hour nursing support that he needs while she can do various activities with him.

So they've moved to Thailand and their super is paying the monthly fee.

What I would love to share with you about the Veterans Care nursing program is not only do we have that program working well in Australia, but one might question, well, what are the results? Does it really make a change? A really brilliant researcher From Sydney University, Yoon Hee Jun did a brilliant evaluation of the program which showed that people in that program entered residential aged care for half as long as people in the mainstream aged care program, just right

So we have one of the longest stays in residential aged care in the OECD, roughly two years. In this program, people stayed for about 13 months. Now if you applied that across the population, that would mean we'd have people staying in residential aged care for shorter periods. And why were they staying for shorter periods? Because they were able to live at home for longer.

And the rate at which people went into residential aged care was something like halved really.

Absolutely. And communication is, is a key deficit here. There is no doubt about that, while I've never heard explicitly what the intention is by failing to communicate how long the wait is, my guess would be is that the government is hoping that those wait times will reduce.

Right.

And so therefore the expectation is that what might be a 300 day wait today might be a 250 day wait or less tomorrow. There are targets that we have currently around how long it should take for an assessment to occur. My argument still comes back to the fact that actually, again, even if we didn't care about the human cost of the wait, which for me will always be the priority front and centre, there's a financial cost to making people wait this long. So my fear is that these 300 day waits that you're referring to are being treated by government as a measure to manage a budget, when in fact in the medium term and maybe even less, they actually create a great deal of cost by making greater care costs.

It does appear that the trajectory is reducing, certainly the number of people I have noticed on the wait list itself. So number of people is different to the time you wait, right? Yeah, but the number of people is slowly reducing. Not in huge proportions, but it is by some measure. And one would think that if the number of people is reducing, then the amount of time you wait for care is reducing. But of course that doesn't assist when we think about the CO payments issue, that's sitting behind that as well. So you might be approved for a particular amount of care, but whether you can afford the CO payment associated with that care is another question.

One element of it, one element.

That's right. So there are effectively three limbs to the CO payment. One is what's considered clinical care for which the government pays the full amount. And showering and wound dressing used to sit outside of that category. If you needed support with those things you used to have to make a CO payment. Now, those things as of October, so not yet as of October, that will move into showering and dressing, will move into the clinical category and therefore not attract a CO payment. Anything to do with what's called independent and everyday living attracts a CO payment. And quite a significant CO payment if you're a pensioner. Now, unfortunately, 75% of people accessing support at home are full or part pensioners. So when you start accumulating the number of types of care they might need and the contribution they have to make, it can be a very significant proportion of their potentially $600 a week pension. And that's where I see a lot of children stepping up. Stepping up, that's right.

That's 100% the case. So we see it happen in several places. Many listeners will be very familiar with the My Aged Care system. The Office of the Inspector General did a big review of the My Aged Care system, finding it was incredibly onerous, hard to navigate and sometimes it was potluck as to whether you reached the end of the the system at all. The number of. If I had a dollar for every time someone said to me, I've got a PhD and I still can't work out how to use this bloody thing,

I definitely have never seen any evidence that it was designed to alienate you.

certainly feels that way. And there are occasions when I think we over complicate and over bureaucratise government systems and we do need to step back and rethink the whole thing again. And sometimes appetite to rethink things in government can be very low. But I see two big places where people drop out and give up in the system. One is my aged care. This is just too hard to navigate. I can't do this. Then by the time people get through My aged care, they're either waiting so long for care or they discover that the CO payments associated with receiving care are so high that it's actually inequitable to access them. Yeah, there's no point doing that and not feasible. They either give up or try and find a standard of care that may not be up to scratch from Somewhere else, whatever that may look like. And that's where people drop out too. Now you might think, oh, well, that works for the government, but it doesn't. It doesn't work for the government when people drop out of the system because those people don't leave the system. They come back months later, sicker, frailer and in a situation where they're far more desperate. And actually that costs a whole lot more.

That's right, the very same budget.

And I haven't seen hard evidence of that, but that would certainly be my observation.

But perhaps my most standout observation while I was Inspector General and the evidence is showing this time and time again, is that, that those with the least means are actually bearing the greatest impact. So to give you an example, in at the moment, aged care subsidies are means tested and means testing is a well proven concept. We have that across most areas of Australian government policy. And it comes from a very sound principle that those who can pay and those who can't are supported by those who can. However, the way it works in every other system is that you never pay more than a particular proportion of your income towards care. That's no longer the way it works. So if I'm a full pensioner and you're a full pensioner, if I'm sicker and frailer and need more support, I pay more from my pension because each type of care attracts a different co payment from me. And although that might be means tested, that co payment for independent living, it sits somewhere between 5 to 15% of the cost of care. If it's an item from everyday living, which could be just getting out in the community or transport, I can be paying 50% of that cost. The more items I need, the more I pay. And Suddenly I'm paying 3,$350 out of my $600 a week for that kind of care. Now if I have to decide whether I'm paying the electricity bill or turning on my air conditioning versus receiving care, what am I going to choose? And so what happens is the sickest and the frailest give up the care amongst our pensioners so they can pay

That's right. So that's where I see the greatest burden being born at the moment.

And I don't think that's the intent of the system.

So a little bit of background as to how this occurred. There was an inquiry about why the government wasn't releasing more aged care packages. And the government committed to releasing thousands of new aged care packages to try and stay up with demand. And that commitment was made towards the end of last year. However, in order to financially meet that demand, the packages that were released more quickly only attracted a 60% interim funding level. The idea is that that is interim, meaning that within, for example, two to three months, you'll go back up to 100%. However, if your care has been assessed as needing a raft of particular things urgently and that you need 100% of those things, 60% will go some way, but the remaining 40% doesn't suddenly disappear out of your needs. You still urgently need those things. So decline will still occur when you don't have that 40%. But it is intended that the 60% is a temporary measure. And at the moment, I think where last, last I looked at was around eight to 12 weeks before you'd reach your full package.

That's right. And then it's an interim period for which you get 60% until they can find the remaining 40% to apply.

So it's to give you something once you've reached that point in the queue, but not everything until they're financially ready to give you everything.

Well, we've certainly seen some significant statistics around the number of people dying before they get any package at all, before

However, I'm also aware that some may argue, well, you know, how do you know that wasn't going to happen anyway? I think what irks me the most, and is probably most destabilising, is to hear, for example, somebody who's been under assessed goes back for reassessment, and in the period where they know they've been under assessed for care, and in the period that the reassessment is occurring because they haven't received that care, they pass away. And I've seen some very sad examples of that.

So the intention of the algorithm originally was that there would be clinicians who would make ultimately the decision. It would. The idea of an algorithm should be that it assists in making a decision. And where we've been at in aged care is that it's one of the few areas in Australia where clinicians do the data entry but don't make the final decision about care. With many other areas of, for example, healthcare in Australia, where it's always left to the clinician to make the decision, understanding that human judgment is the ultimate. There's a lot of things that an algorithm could never pick up. So it's that ability for clinicians to give that human override that is absolutely critical here. But there is no doubt that there are aspects where it can inform particular decisions, but there will also be cases where it's nonsensical as well, and you need a clinician to decode that. The calls have come, as you would have seen on ABC's Four Corners, for the algorithm to be reviewed. So there have been numerous reviews of the fact that is, the algorithm is biased towards particular things. It hasn't had any clinical validation.

And that while a decision can be remitted for review at the department, there's no ability to clinically override the decision of the algorithm. And so we are starting to see a number of cases emerge where under assessment has occurred. And I can recall a case coming to my office that somebody shared, indeed, it was a provider who said that, a gentleman who had been receiving medication support at home for his Parkinson's disease was declining and he needed to be reassessed. So the provider supported him to access reassessment. The reassessment halved his original medication support needs. And after months of begging for the reassessment to occur, when the reassessment process was meant to start again, the day before he passed away, when the heat came on about the algorithm, the government committed to reviewing the algorithm and committed money to to reviewing that assessment process, that part of the assessment process. However, the algorithm is still operating. We are still hearing cases whereby people are being under assessed. There is some suggestion now that there are a lot of people receiving less than what they did previously receive. Of course, that will have to form part of the review. It's not a categoric finding, but as we know, Cathy Eager has somewhat reverse engineered the algorithm and been able to demonstrate where some of the problems are lying in the way it's arriving at its decisions. The government has also committed now to remitting decisions where the clinician has a problem to another decision maker. But that is not the same as having a clinician able to critically assess the algorithm's decision and determine whether it's nonsensical or not.

It's a great point and of course it's very easy to look at the countries that are doing it well and doing it better than us and think, well, why can't we be like that? And in some ways fair enough, because we've legislated this new ambition. Let's find the means to get there. That said, absolutely, we are a wonderful place to grow old and we are doing better than many. In fact, the quality of residential aged care in this country is probably a lot better than many places in the world which don't really have options for people whose care needs exceed those of that that their people around them can support. I think one of the difficulties, and I never like saying that there are difficulties with making comparisons, is that we also can look to countries where aging is treated differently, where the collective responsibility for looking after our elders sits not just with the biological children, but with neighbours, with those around you. It is a much wider responsibility. There are many countries where the concept of removing an older person from the family unit is anathema. You could say sometimes comparisons are odious, but there is no doubt that the amount of government funding and support that we put into aged care is really something quite phenomenal. Where I think we have the greatest opportunity is to spend it better. Because I think the money we're spending, I'm not. I won't criticise that for one minute. But what I will say is that if we front loaded it into that prevention and early intervention and supporting our carers and our sandwich generation to support their family, we could make it go a lot further.

We have great intention legislated now in our new Aged Care act, but I think what we have is a fundamental design problem in the way we're administering that funding.

That's right. Yeah. No, they. They're definitely used to my advocating harder when the answer is no.

Thank you.

Thank you so much.

this period of your life with some

You make one phone call to get help for your ageing mum or dad and suddenly you are drowning in acronyms and waiting lists. The aged care system, it's a bit

of a wall of these acronyms.

Phone calls, waiting lists, and nobody's really giving you a map or a guide. Well, we see you. We want you to know that you're not behind. You haven't left it too late. And wherever you're starting from is the right place to start. You should. You don't have to hold all of this in your head on your own. And you can keep what matters most to your ageing mum or dad right at the centre of every decision. That's what Vera is here for, any time of the day or night at Vera Guide. It's free, safe and secure, built right here in Australia with families and the experts who know this journey.