Transcript
Ash de Neef: Daniela. Thank you so much for joining us on the podcast.
Daniella Greenwood: It’s a pleasure. Thanks for having me.
Ash de Neef: Can we start with a little bit about your background and how you got to where you are now?
Daniella Greenwood: Previous to working in the senior aged care space. I was in the arts in a completely different profession and ended up volunteering in aged care one day. And fell in love went back to uni, worked as everything from a volunteer to a personal carer, to a lifestyle coordinator. And then I studied long distance to get a degree around lifestyle therapeutic recreation, and worked in a range of roles across aged care and came to it from probably a different perspective than people who’d come from a medical background or had been in it their whole lives.
You see kind of possibilities. When you enter something new. I worked for a few different organisations and then eventually worked my way up. And my last roles in an organisation was with Arcare where I was national strategy and innovation manager. And I also supported lifestyle at the same time.
And I had a fantastic time with Arcare actually, and then went out onto my own as a consultant around three years ago – Arcare were my first client for about six months. And then I’ve worked with quite a few different organisations here in Australia and in Canada, and in the U S since then.
I just recently finished an honours degree, a dissertation that looked at long-term care and residential aged care settings, and specifically people living in the moderate to later stages of dementia. And what human rights and citizenship meant for people who were at that level of vulnerability, living in institutions.
Ash de Neef: Fantastic. And I do want to touch on the human rights stuff in a little bit, but maybe we can dip into your consulting work here. What kind of circumstances are you often brought in to help an aged care provider?
Daniella Greenwood: That’s a great question. Someone said to me, do you have a website or a business card?
And that isn’t my deal. Since I left Arcare I’ve been lucky enough to be able to get invited, to be engaged with good organisations and good projects. And it means that I’ve got the space thankfully, to not get involved in things that I’m not connected to or don’t feel are ethical.
The first few things I was hired for was to put in a model of staffing that I introduced at Arcare and we trialed and then introduced across the whole organisation. And that’s consistent staff assignment -when I was with Arcare we called it dedicated staff assignment. But it just means that the same staff work with exactly the same residents every time they come to work.
And that was one of the things, like I said earlier, you would think wouldn’t they be doing that? Anyway. I know when I said to my mum, “I’ve come up with this new model and we’ve researched it for a year.” And when I told her what it was, she said, “yeah, but wouldn’t that be what they did.”
And you would think it was common sense. What people don’t know is that even in institutions where it looks like you see the same faces. If you’ve got about a hundred residents in one of those big places, you’re looking at any one resident over a month having between 28 to 49 different people having access to their naked body.
Ash de Neef: Wow.
Daniella Greenwood: And you could talk about all of the medical and clinical benefits of having a consistent person. But at the end of the day, it’s just asking ourselves how many different people do you want taking you to the toilet? And that’s the kind of question we do need to ask is…
This is us in aged care. If we’re lucky enough, they’re not others they’re us. Do we really want a system that allows that to happen and just thinks it’s okay?
I remember when I first researched it, one man I was talking to, I said “tell me about what it was like before you had this consistency and after”, and he just said, “look, it’s confronting enough to be physically vulnerable to the point where you need help in the shower and especially need help going to the toilet.”
They’re really confronting and it’s a vulnerable place to be. So you have the same couple of people assisting you with that. You get used to it, you can build up a kind of relationship. But if it’s a different person all the time, your humanity and dignity – where does that go?
Ash de Neef: Yeah, it’s terrifying to think about yourself in that position and how, I don’t know how I would cope in that sort of circumstance. So I know that consistent staffing assignment is something that’s, it’s talked about more these days, but there are still some barriers preventing from its widespread implementation.
What do you think is the biggest barrier that needs to be overcome?
Daniella Greenwood: Yeah, that’s a fantastic question. Having worked with so many different types of organisations implementing this now from really tiny places to the small household models. To really big institutions and again, in the US Canada and Australia.
And I would say the very first thing that is the biggest barrier is the fact that it’s not seen as an immediate non-negotiable operational imperative. That it’s seen, that organisations might think, “Oh, look, we’d really like to do it, but it’s hard to get our staff to it” never should have gotten to that stage.
This is a basic human right around dignity. And there’s a whole lot of other reasons it’s related to human rights too, in terms of decision-making. If you’ve got dementia or you express yourself non-verbally, when you know someone really well, even if they’re smiling, you can tell if they’re in pain. Like my sister gets this kind of wooden smile, and I know she’s got that lower back pain.
Can you imagine being in that space and being around people who knew you so well, that they were like, something’s not right with John. I’m a bit worried. I think he might be in pain, or I think there’s something that he’s not liking here. It’s the fact that organisations, that the industry that we as humans, haven’t just said, this is the only way we do this.
And we’ll sort out details after that. We have to do this. You wouldn’t talk someone in a maternity ward into trying to feed babies. You wouldn’t say “it’d be nice if they fed the babies, but it’s hard to get our nurses to.”
And that’s where a bit of ageism comes in. Professionals work in this space and haven’t thought to themselves, “wow, that’s a lot of different people helping these really vulnerable people.”
And the fact that’s accepted. That’s the first thing we need to look at. Why is it so invisible? How horrific that is? Once we can get past that. I think it, this is where it needs to be built into the legislation. It needs to be built into, if you are going to say that you’re an aged care provider, this is what you need to do.
Ash de Neef: That sounds like it’s going to require massive reforms, maybe led from legislation as you’re saying. But the sort of changes that need to be made across the whole industry to make that possible would be massive.
Daniella Greenwood: I think as soon as the powers that be use whatever legislative power and expectations around compliance, as soon as it becomes that believe me, organisations will find a way.
And look, I’ve worked with stuff implementing this and never have I found staff who want to go back doing it the other way.
Ash de Neef: Yeah. It feels like a no brainer.
Daniella Greenwood: Yeah, it is. And it’s just crazy that it’s still seen as an aspirational goal. And I think linking in with where you wanted to go with the Royal Commission or even thinking about human rights in terms of how that all links.
I think that’s what a human rights lens brings.
Ash de Neef: Yeah, absolutely. You’ve used a really powerful quote from CS Lewis. If I might just quote you here, “a tyranny, sincerely exercise for the good of its victims may be the most oppressive.” So that’s implying some pretty dangerous misunderstandings. Right?
What do you think some of these are?
Daniella Greenwood: I think the second half of that quote is the most important, because it goes on to say “those who torment us for our own good, they’ll torment us without end”. That they do so with the approval of their own conscience. So you can have really awful people who’ve got no morals and do terrible things to people and even they will occasionally go, “Oh, maybe I crossed the line there”.
But when people think they’re doing good, their conscience isn’t going to kick in. So that quote is used as a fantastic, one of the best definitions of paternalism that I’ve heard. We’ve got do-gooders doing things that think are really good and it’s actually really oppressive stuff. And then people most vulnerable, of course, to that kind of oppression by well-meaning people, are the vulnerable people living in institutions and particularly people living with dementia. You’ve a perfect storm.
This system in Australia, that calls itself market-based, we’re going for a market-based aged care system and that’s supposedly going to inspire innovation. And it’s supposedly going to make providers really compete with one another.
But what they’ve missed in this little equation is, or perhaps not missed, but strategically forgotten is that those vulnerable people aren’t consumers. These aren’t people who can engage themselves in complaint processes.
These aren’t people who can vote with their hip pocket. These aren’t people who can say I’m paying so much money for this, and this is a terrible service. I’m going to move somewhere else. That’s not the way it works. So you’ve got people thinking they’re doing something for someone’s own good, and a lot of that comes from that medical model.
And when I say medical model it’s a sociological term that talks about human beings being seen for their deficits and come under the purview of medical experts. Like old age is now seen as a sickness that’s controlled by medical people, rather than as a blessing that we know.
We’re not surprised that people get vulnerable. We’re stuck in these bodies, they break down and our brains [and] bodies, they break down in different ways uniquely to each person. But they don’t go on forever as is the idea that we can’t build institutions that support that part of people’s lives and just try and make it amazing for them rather than all of these approaches that are so based on making people do things for their own good.
I was reading just today about something, this wonderful idea of improving food in aged care. And I couldn’t agree more, but then it goes straight to nutritionists. And again, as I said, at my Royal commission and the commissioner laughed, I said “what if I don’t want nutritious food? What if I want like red wine pizza? Or is that your speed?”
And he laughed and said, “Daniella, there’s nothing wrong with red wine and pizza.” But then quite seriously, I looked at him and I said “good luck with that if you move into aged care” Because there’s going to be a whole support plan that says that’s not nutritious enough for you or good for you.
The second you move in everything is owned by medicine. And I don’t think that’s what any of us want. Would you want that? No, me either.
Ash de Neef: You mentioned there that you’ve been working in the Royal commission process and you were an expert witness for a panel on it. You mentioned there that perhaps change should come first from legislation or should come from the government’s approach.
Do you think we need this top down approach?
Daniella Greenwood: I think five years ago would have said that’s nonsense, but it’s necessary. There needs to be in place some absolute non-negotiables. They shouldn’t be up for discussion. It shouldn’t be up to someone’s decision about what their model of care is. And who’s bought the latest copyrighted model of care and sent their staff off to expensive training and hoo-haa stuff when they come back into a system.
For instance, just day-to-day life, like waking up, they’ll send staff to expensive training or dementia training, that’ll say it’s important to be flexible, but then they come back to work and having been a personal carer. I can tell you you get there at seven and if you’ve got to get eight residents up, you’ve got between the hours of seven and roundabout eight to get them in the dining room breakfast.
That’s just a basic operational non-negotiable meals need to be flexible.
They can do it in the Qantas lounge. They should be able to do it for our most vulnerable people.
So the staff are run off their feet working with people’s bodies. It’s time-consuming work. If you want to do it with dignity, to help a person get ready for the day, get their identity in place, get their lipstick on, get their hair, get their clothes on. So they feel like themselves.
And not these people who are dragged in and out of a shower, into a dining room. So an operational non-negotiable has to support human rights. Has to be all meals need to be flexible and people need access to food in between set meal-times. And I think consistency in staffing is a non-negotiable. It has to be. There needs to be some operational non-negotiables that the whole industry does.
I think there needs to be someone with legislative connection to government, but they need to be external from government who oversee this, someone who takes the position of the United Nations. So as each organisation gets given these non-negotiables they create action plans to put them in place.
Then they have to be transparent with their own stake holders and then they have to come and report back to the UN. Well, it’s not really the UN it’s, whatever this body sanctioned with codified authority as each organisation begins to get these key operational and practice non-negotiables in place.
And that’s just the start.
Ash de Neef: Could you give us a few other examples of things that you might think should be non-negotiable?
Daniella Greenwood: Absolutely things around privacy at the moment, people come into aged care and it’s just assumed that everyone can hear their business. So in a lot of the electronic care planning, they’ve got a drop down list called next of kin, and it’s got no link to whether that person has any challenges that might need someone to help them with decisions or to hear their personal information.
It’s got no link to legal powers. It’s just the second someone moves in it’s assumed someone else will speak for them, or at the very least have to give their sanction to decision, be there to hear the care plan reviews and to give their opinion and information.
That would be considered illegal in any other context, can you imagine your GP, calling your partner and saying, “Oh yeah this is what’s happened to Ash today we’ve put him on some antibiotics”? You could sue them.
But for some reason, older people don’t get that same kind of respect. And again, we have to start by saying most of this kind of paternalism is completely invisible because the paternalism has been so normalised to say to these really well-meaning people within this food group who are really good people.
To say to them can you just stop? Why have you got nutritionists calling the shots? Why don’t you have asking actual individuals, what they might want to eat or not eat.
And people go, “Oh yeah, I didn’t think about that.” Why didn’t we think about that? Because this paternalism is so normalised in day-to-day life, all of these things that a lot of them quite horrific, [become] so normalised that they become invisible, they just become, this is the way we do things around here.
Really just business as usual. The OECD puts up at least 70% of older people living in these institutions had kind of cognitive changes that would mean they couldn’t engage in resident surveys. They couldn’t do their own assessments. They cannot engage in complaint processes.
But again, nobody’s gone “well obviously we’re using the wrong methods if only 30% at the most, this works for.”
So those kinds of non-negotiables to make sure as you would in disability, you wouldn’t have a place where people living in wheelchairs could come that only had stairs. But in the disability field, those kind of things are a lot more “wow that’s wrong”.
But we lose that once people get older. And of course that’s because of ageism, dementia-ism and just that deeply embedded paternalism that comes by saying “make them eat food that’s good and nutritious whether they want it or not.”
Ash de Neef: Starting with the top down approach that if it’s legislation first and it’s enforcing these minimum standards, where do you see the responsibility of aged care providers of the industry itself?
Daniella Greenwood: I think within the framework of what we set up, these are the non-negotiables and we make, as we said before, their responsibility first and foremost is to get the non-negotiables right.
And then they have to come to that external body and say “we said we’d have that done in three months, but we’re not there yet -his is the reason why”.
This is how they have to be transparent to everyone around these non-negotiables. And of course, there’s so much of what we’re talking about now isn’t legislatable
And even if it was, it wouldn’t cover this. So these are human rights laws, and they’re also human rights norms. And the best, most well-meaning people around culture change and people talk about person centered care, which is about really individualised care.
But again, if you don’t move that paternalism and there’s making people do stuff for their own good, usually their own clinical or health good – health, isn’t the only human right.
Then you’re still getting people who are bossed around just in a much more individualised way. Do you know what I mean? Like “John will play lawn bowls to improve dexterity.”
Yeah, no… John plays lawn bowls cause he really likes to get away from his wife once a week. He likes having a beer with his mates and is quite competitive.
Isn’t that enough? Not once you move into aged care, all of a sudden it’s got to have these medical kind of therapeutic… We just got to leave people alone. Honestly, that the norms will take longer. But I think we’ve got to stop working on staff psychology, which is where all the pressure is gone now.
So it’s up to staff for them to see the whole person for them to be better people. It doesn’t allow for bad people or people just having a bad day. The kind of practices that we’re talking about need to be observable and measurable, which means if you use pet names, you can’t work with vulnerable people.
If you’re going to go, “come on, darling. There’s a good girl.” You can’t work in this space. That should be a practice non-negotiable those types of – and tone of voice. And just that air of authority, bossing people around. All of those practice non-negotiables that you can witness need to stop.
And it doesn’t matter what culture you come from. I’m not trying to get into people’s heads. I’m just saying, if you work in this space, this is what you can and cannot do. And I think the work to date has gone really in that philosophical “let’s try and turn all these aged care workers into nicer people”, rather than let’s not be so arrogant.
Let’s just put them in a system where they’re not forced to wrench people out of bed. That they’re not praised when they get four people done quickly. Where the actual operational environment supports their human rights practice, rather than works against it – actually makes it impossible. And I’ve got to say, it’s very stressful for staff – they don’t want to work that way.
Ash de Neef: I have to admit that before coming into this conversation, I think I had an idea about that – It would be a difficult process to I think I used the word unify in one of the questions. And that your unifying industry and government under the Royal commissions findings or anything that comes out of that.
The way you’re speaking seems to be ignoring the need to unify and just setting “this is the hard limits and you need to comply with these because we’re talking about individuals.”
Daniella Greenwood: Believe me when people are given rules and absolutes, it is easier. They are combined in that one purpose. And we do know that out of the Royal commission will come a new aged care act and that aged care act will be underpinned by human rights principles. So we’re going to get into aged care what was missing since the act came into play.
A Senator said, “oh we’re going to…” the government was going to relinquish their own responsibility for our citizens and give it to the free market.
And that’s all well and good, except then you miss out on everything. Then you miss out on the protections that human rights law would bring and social workers and human rights lawyers into that space. Because now there’s this pretend market-based system where market forces are going to determine quality.
And again, human rights puts our attention firmly on the most vulnerable who up to now Ash they’ve got no protections. They’re not protected by law. They’re not protected by norms. They’re not protected by these surveys or by market ideology. These people are the most vulnerable. These are your parents. This is you when you get older.
These are our sisters and brothers and parents and lovers. There’s nothing right now to protect them because what is currently in place to set up for people who are really functioning in a way that they can either vote with their pocket or complain.
So I think it’s exciting. I think the commitment of the Royal commission moving forward to build what it does on human rights principles. Which believe me brings with it non-negotiables. So to define them for industry so it’s not gray anymore. We’ve had this kind of system that looks at outcome. You can’t do that. There’s got to be non-negotiables that underpin the way this service is provided.
In Australia at the moment, I could take any older person and put them in a doubly locked dementia specific unit, and there would be nothing they could do about it. I could have a daughter saying “mum’s a bit…you know, she gets a bit of aggressive…” Straight into a dementia – and then her house is up for sale.
I’m telling you there’s a myriad. And guess what? All of the surveys and work they’ve done with the Royal commission, they released a survey a while ago and they admittedly said, “we didn’t get a chance to really look carefully at financial elder abuse.” And they certainly didn’t look closely enough at sexual abuse.
So human rights would create a level playing field that everyone can understand. And we’re going to need a role. That’s like a human rights executive for Australia who makes sure that – not a medical head. A human rights head because as I said, health is one only one human, right. And often you and I choose to forego health to have a drink, have a cigarette, not exercise like we should, stay up all night binge watching Netflix. Am I just talking about myself? No.
But we make decisions that aren’t always in our best health interests and people living in aged care should be able to make the same kind of choices that you and I can make and not have to wait for their family to say, it’s okay for the medical community to say it’s okay.
Or for it to fit into the schedule of the aged care home meal times. I think it will bring everyone together. Having that human rights lens, a new aged care act underpinned by human rights principles. I think once and for all will really create some clarity..
Ash de Neef: Great. What else is known and what is hoped for? We’ve talked about a lot of things that should happen here – I guess I’m trying to understand through your experience in the Royal commission, what do you know that will happen after this?
Daniella Greenwood: I know what I hope. I hope that home care gets more funding. So people aren’t on waiting lists and that’s seen as unacceptable. Again, I was speaking to someone just yesterday who said, “what do you think those intergenerational programs in aged care?” I said, “you mean normal living?” We all live into generationally, just put money into home care so people can live in normal neighbourhoods.
This is crazy thinking. It’ll actually probably save money in the end, but I hope that they stop keeping people on those waiting lists in home care. I hope and pray that they provide more support to the family members who were supporting vulnerable people who aren’t going into aged care.
Because that’s an abuse of government trying to squeeze out extra resources from families who are already run off their feet and stressed. There should be a range of options for respite and stay in overnight help for people. We need to be focusing on that, but I deeply hope that. I know that you could tinker around the edges and you could talk about staff ratios and skill mix, and a whole range of things.
But that’s not enough, all of that will come. If you put human rights at the center of care and of care practices, I think human rights will lay all of that out. I really do for the other recommendations for certain.
Ash de Neef: Great. Now you mentioned the problem of funding. Are you anticipating that through a human rights based approach, we’ll see more funding distributed.
Because that seems to be coming from the industry. That seems to be a key concern that yes, “we’d love to make these changes, but we don’t have the funding or the staffing to do them”. Do you think that’s something that will change?
Daniella Greenwood: I hear that every day. I think as the Royal commission has pointed out, we need absolute transparency around where our money’s going.
Yeah. So 28 billion in aged care services, 18 billion in residential aged care, 13 from government another further five from consumers themselves. We need to know where that’s going.
But I don’t know that’s the question. I think the question is as a society, and this is not on government and it’s not on providers, this is as an Australian community, whether it’s franking credits or whatever.
This is about the Australian community answering a question like how do we want to grow old together in Australia? That’s the question, the money side. This is us. This is our trajectory. If we’re lucky enough to get old, these are citizens who have just as much as right to live lives in the community and engaging in the community.
At the moment, we’ve got a system that’s perfectly set up for about 20 years of people’s lives. It’s no longer good fit for purpose. So it’s the Australian community who’s going to have to say, “let’s stop talking about value for money and start talking about how we want to grow old together.”
So the government, no matter who you vote in is going to have to be guided by the community. And it’s up to the community to say, “no, we don’t want this to happen anymore. We don’t want people to live this way. Not on my watch.”
And that’s where the money will come from. We’ve got enough money in government. to support vulnerable people. There’s some people living with profound disabilities in their own home that are getting between 200,000 and $800,000 a year to help them live on independently. But not once you turn 65. Yeah. That’s not. Okay.
Ash de Neef: So let me play the cynic here for a moment. We’re talking about a conversation change and we’re talking about the Australian community gathering around this issue and saying enough is enough, and we need to change the way that we approaching this. This hasn’t happened yet. So what’s going to need to happen for it to be the case?
Daniella Greenwood: That’s a fantastic question too. Great questions and confronting questions. I think it’s so important for everybody to say it hasn’t happened so far.
All of this money. We’ve spent all of this research, all of this money that all of us invested, and we continue to invest every year and we’re spending all this money on something nobody wants. We’re spending all of this money on something where we get. Those graphic images that came out of the Royal commission, like those horrific videos of people being abused, this is what the systems create?
And we’ve had people selling person centered care products for 20 years. We’ve had them selling all these models of care and architecture and still it’s failed. So I think the first point is to say it’s failed, and that’s the starting point. Because I don’t think people are aware. I don’t think they’re aware of what needs to happen and how things can be different.
They really can be these, we can live together and not treat each other in these sometimes house of horrors. You know you’ve got people being drugged for dementia behaviours when they’re just protesting being wrenched out of bed at seven in the morning. And we’re drugging people for not wanting to have showers when they’re not in the mood.
This is a house of horrors at the moment. The answer has been to train staff around person centered care. And how victim blaming is that for staff? When the whole system set up and codified, and even incentivised aged care homes, get paid more money, the more behaviours they find.
Ash de Neef: Can we just circle back for a second there?
Just so I can really understand, because I haven’t heard that before. You’re saying that aged cares will receive additional funding based on how many incidents of dementia related behaviour they record.
Daniella Greenwood: Yeah. Yeah. So people are on a behaviour chart and that gosh, I’m so glad I haven’t been put on a behaviour chart because the type of things that are written there [are] things most of us would do.
If you just get up and think, “Oh, I’m so bored, I’ll have a bit of a walk around.” That’s wandering. Yeah. That’s wandering that’s a behaviour. That’s fundable.
I can send you some information on this, but it’s so linked to people receiving anti-psychotics and other drugs to other psychotropic medication to calm them down when it could be based on the way they were spoken to, or it could be…
Yeah, just a recognition that dementia is a real mystery and we’re not always going to know what’s going on for someone. But we can be decent to them because the main reason we should be interested in why someone is distressed, just because we’re humans and not monsters. And we think, “Oh, what can I do to make it better?” And sometimes, the first thing we should be looking at is pain.
But when staff are told that all of these expressions are just symptoms of dementia, they even cut off from things they’d normally notice in their friends and family and even in themselves, so she’s calling out that’s because that’s a symptom of dementia rather than I wonder what’s going on for her.
Is she in pain? She needs something or is it just a really valid protest about being shoved into this place. They can’t get out really. When you think about it, they say it’s a house of horrors and it’s become so normalised. And so business as usual that people aren’t questioning it. So I think that’s where a human rights lens is going to really help too, because these things are unacceptable.
Ash de Neef: Yeah.
Daniella always we’ve covered a lot and in a lot of really interesting detail, is there anything else you wanted to talk about today?
Daniella Greenwood: No, it’s been a fantastic conversation, actually gone places I hadn’t preempted, which is always really lovely. And thank you for your thoughtful questions, especially the nuances of, will it be peak bodies, government, all of these nuances, which of course are the questions.
And hopefully the Royal commission helps and what the government accept from that and decide to go with, I think you’ll get bipartisan support for the human rights principles and framework. And I think anything that could happen that’s where we need to start.
Ash de Neef: Fantastic. Thank you so much for your time Daniella.
Daniella Greenwood: Thank you.
