10-Oct-2011 Stringent industry regulation is often couched in terms of how it negatively impacts on providers and staff. Here, industry figures tell Darragh O Keeffe why it's the residents who are losing out the most, and that it's time for the industry to push back.
"Heaven help the person who tells me at aged 90 that I can't have my brie. Heaven help the person who says I can't have my bagel and cream cheese."
Stephen Judd has been talking about cream cheese, brie and other soft cheeses for the past 20 minutes. Not that the CEO of Hammond Care is a closet foodie. Rather, he's using food as just one example of how the regulation governing aged care has numerous unintended negative consequences.
Simply put, residents lose a lot of their rights, freedom and choice when they enter residential care. Regardless of how they lived their lives at home, once they enter residential care they effectively relinquish control over their lives to the system.
It is the kind of stuff he says, quite rightly, that you and I would "go nuts about".
"I don't think anyone wakes up and says, 'How can we make the lives of people in residential care more miserable today?' It's what regulatory researchers like John Braithwaite call a 'protective disciplinary culture'. Its 'protective' because there are imposed rules; they're actually disciplining people for their own good. They're saying 'OK, we don't want that person to wander out into the street and therefore we will restrict their liberty'. And, frankly, we actually don't have that right. There is nothing under the Aged Care Act that says we can restrict someone's liberty."
Judd brings this 'protective disciplinary culture' to life, most vividly, through the food example.
He cites the food safety regime, which covers vulnerable people such as residents, and 'high risk' foods - the aforementioned soft cheeses, seafood, loose leaf vegetables, cold meats and soft boiled eggs.
"The interesting thing is, this regime can't tell Mapel, who's 95 and living actively in the community, that she can't buy that lettuce in Woolworths. They can't tell her she can't go to the fish shop and get sashimi. But, they can regulate these high risk foods in residential facilities. So, on the basis of where you live, not who you are, there's a regime that effectively disciplines what you can eat," he says.
He adds that the regulatory regime doesn't actually say that providers can't provide these high risk foods, rather they must demonstrate they have the sufficient regime in place to deal with the risk.
Unsurprisingly, this ensures providers become risk averse. "Rather than giving the residents camembert or brie, they give plastic cheese slices, tinned vegetables rather than loose leaf vegetables. They'll remove cold meats from the menu."
To make matters worse, Judd says the regime is not "terribly evidence based...and is bordering on nonsense". In some ways, it's about perceived rather than actual risk.
"I mean, does salmonella occur? Yes. Does listeria occur? Yes. But, if you actually look up the number of reports, you're more at risk of getting typhoid in this country than you are of getting listeriosis. There are about 60 cases of listeria in Australia every year and I suspect they are where the water quality is poor. Hammond Care is going to be doing research around this area."
Earlier Judd had referenced the regulatory researcher John Braithwaite, who coined the term 'protective disciplinary culture'.
The ANU academic, quite literally, wrote the book on aged care regulation. Regulating Aged Care, published in 2007, looked at the regulatory framework governing the aged care systems in Australia, the UK and US.
Braithwaite agrees with Judd's views on how the regulations are reducing resident choice and, in many ways, the quality of life in residential care.
"If for example you're a person who enjoys sweet things and have done throughout your life and you are overweight, the dietitian is going to insist you go on a diet in the nursing home, so in a sense you lose your right to be fat," he tells INsite.
"We all have a right not to be disciplined. Obviously if we're overweight it's good to be disciplined in our diet. But that's a discipline we should choose for ourselves, not one that should be enforced upon us in old age in a way that never is when we're younger," he says.
For Wendy Moyle, aged care researcher at Griffith University, it is the funding regime that is largely driving aged care's paternalistic culture.
Her recently published research has shown that ACFI drives staff to carry out care tasks that residents are often willing and able to do for themselves. In the process resident autonomy is further eroded; they are no longer allowed to perform the tasks they used to, before entering residential care.
Her research, based on surveys and interviews with 60 residents, as well as staff and relatives, showed residents often wanted to do many of the things that had been taken away from them since they entered residential care.
Moyle emphasizes that she doesn't blame the carers or providers. Rather, the funding regime must change so as to encourage staff to focus on residents' capabilities, rather than on their deficits - as it currently does.
"Take, for example, a resident who used to give himself his insulin," she says. "He comes into a nursing home and that thing he used to do himself is now taken away from him. Instead, it's done for him. There are two issues at play here. One, it's about risk management. And two, it's about ACFI; it's about showing the higher level of care is required. As a result of all this, the care staff end up spending more time on physical tasks, the care tasks, rather than on social or emotional wellbeing."
Moyle, who has been conducting this research in various stages over the past seven years, says all the findings are saying the same thing. "When we looked at the factors impacting on the residents' quality of life, they clearly wanted to do things they had been doing previously. They wanted to maintain their skill set."
She echoes Judd when she says the framework creates a risk averse environment, and risk averse practice.
She uses the example of the specifically designed gardens that many facilities now offer and market heavily.
"You have these beautiful gardens. But, as often happens, the garden is locked, for fear that a resident would go out unaccompanied. Or someone will go wandering. Or someone will go for a walk and have a fall. So, residents are left without the option of going for a walk; a freedom they'd enjoyed all their lives," she says.
Moyle also says that much of this is counter-productive.
If care plans were not so risk averse, if they allowed an element of self determination, there may be a reduction in disruptive behaviours.
"Often, people with late stage dementia demonstrate agitated behaviours. But, if you restrict someone's access to the environment, you restrict their ability to make a cup of tea, or go for a wander; the likelihood is they'll become more agitated. This is all very straightforward, very understandable, and very disappointing," she says.
All of this reminds Greg Mundy of the ABC program The Young Ones.
The aged care commentator and former ACSA CEO tells INsite the documentary illustrated that if you give responsibility and an element of decision making back to the older person "it can make a world of difference".
Like Judd, Mundy says the framework is driven by a view that it's protecting people from harm, "but it actually may be hastening their decline".
"You know, we used to talk about 'institutionalising' people. The institutional model affects everyone in it. It affects the residents, the staff and the management to a degree. There's a mindset within it that says it can't change, it's too hard; we've tried that before years ago and it didn't work. I mean a lot of that is true of aged care."
Mundy feels the Department of Health and Ageing is part of the culture, "and to a fair degree they've acted to reinforce it".
"I remember when the policy around notification of missing residents was introduced and I lobbied against that; I asked them what they meant by 'missing'. Were they saying residents were not allowed to leave facilities?"
As restrictive and counterproductive as the regulatory regime may be, it is certainly not going to change. So what are providers to do?
For Falinski, providers should start to push back, and he says there are three ways of doing just that.
First, he wants to start hearing consumer groups say that they won't put it with it anymore.
"I don't want to hear, 'I don't want anything bad to happen to mum, so make sure she's restrained'. That's not about mum, that's about a guilty daughter or son, or a fearful spouse. I want to hear them saying, 'What can we do to actually ensure mum or dad, or my husband, actually enjoys their life?'
"It's about time the consumer groups actually encourage people to take risks, because life is about risk. As it currently stands, residents of aged care facilities are more at risk of boredom, disempowerment and depression than they are of anything tragic that might occur."
Second, providers need to know the regulations better than the authorities. "No one wants unsafe food. I don't want to be misunderstood. It's about making sure you have good food systems in place. Maggie Beer is passionate about this...She doesn't put any preservatives in her food. But she makes sure she's got the system in place to satisfy authorities."
Thirdly, further regulatory research is needed. "I'm at loss to understand why departments don't engage with the regulatory researchers about what works, as opposed to making up the rules themselves," says Jason Falinski.
Falinski is optimistic about the new model of dementia care she has developed as a result of her research. The model is based on resident capabilities, rather than deficits and already it is producing promising results in its trials.
For Falinski, the changes proposed in the Productivity Commission's draft report might help bring about reform in this area.
"One facet of the PC's draft report I very much support is the opening up of the system to greater diversity. If we broke the mould a bit and didn't put all our eggs in the institutional basket we might get more options. We might end up with options that carry a bit more risk but provide people choice and the room to make decisions for themselves. And some people will chose that option, and they will be better off for it," he says.
Falinski also feels that the more providers question the status quo, the better.
"There are some innovative providers out there like Hammond Care who aren't happy with the current model and realise it's not good for residents and are working to change it. If some providers can break out and do new things, it shows everyone else that there's hope."
"Heaven help the person who tells me at aged 90 that I can't have my brie. Heaven help the person who says I can't have my bagel and cream cheese."
Stephen Judd has been talking about cream cheese, brie and other soft cheeses for the past 20 minutes. Not that the CEO of Hammond Care is a closet foodie. Rather, he's using food as just one example of how the regulation governing aged care has numerous unintended negative consequences.
Simply put, residents lose a lot of their rights, freedom and choice when they enter residential care. Regardless of how they lived their lives at home, once they enter residential care they effectively relinquish control over their lives to the system.
It is the kind of stuff he says, quite rightly, that you and I would "go nuts about".
"I don't think anyone wakes up and says, 'How can we make the lives of people in residential care more miserable today?' It's what regulatory researchers like John Braithwaite call a 'protective disciplinary culture'. Its 'protective' because there are imposed rules; they're actually disciplining people for their own good. They're saying 'OK, we don't want that person to wander out into the street and therefore we will restrict their liberty'. And, frankly, we actually don't have that right. There is nothing under the Aged Care Act that says we can restrict someone's liberty."
Judd brings this 'protective disciplinary culture' to life, most vividly, through the food example.
He cites the food safety regime, which covers vulnerable people such as residents, and 'high risk' foods - the aforementioned soft cheeses, seafood, loose leaf vegetables, cold meats and soft boiled eggs.
"The interesting thing is, this regime can't tell Mapel, who's 95 and living actively in the community, that she can't buy that lettuce in Woolworths. They can't tell her she can't go to the fish shop and get sashimi. But, they can regulate these high risk foods in residential facilities. So, on the basis of where you live, not who you are, there's a regime that effectively disciplines what you can eat," he says.
He adds that the regulatory regime doesn't actually say that providers can't provide these high risk foods, rather they must demonstrate they have the sufficient regime in place to deal with the risk.
Unsurprisingly, this ensures providers become risk averse. "Rather than giving the residents camembert or brie, they give plastic cheese slices, tinned vegetables rather than loose leaf vegetables. They'll remove cold meats from the menu."
To make matters worse, Judd says the regime is not "terribly evidence based...and is bordering on nonsense". In some ways, it's about perceived rather than actual risk.
"I mean, does salmonella occur? Yes. Does listeria occur? Yes. But, if you actually look up the number of reports, you're more at risk of getting typhoid in this country than you are of getting listeriosis. There are about 60 cases of listeria in Australia every year and I suspect they are where the water quality is poor. Hammond Care is going to be doing research around this area."
Earlier Judd had referenced the regulatory researcher John Braithwaite, who coined the term 'protective disciplinary culture'.
The ANU academic, quite literally, wrote the book on aged care regulation. Regulating Aged Care, published in 2007, looked at the regulatory framework governing the aged care systems in Australia, the UK and US.
Braithwaite agrees with Judd's views on how the regulations are reducing resident choice and, in many ways, the quality of life in residential care.
"If for example you're a person who enjoys sweet things and have done throughout your life and you are overweight, the dietitian is going to insist you go on a diet in the nursing home, so in a sense you lose your right to be fat," he tells INsite.
"We all have a right not to be disciplined. Obviously if we're overweight it's good to be disciplined in our diet. But that's a discipline we should choose for ourselves, not one that should be enforced upon us in old age in a way that never is when we're younger," he says.
For Wendy Moyle, aged care researcher at Griffith University, it is the funding regime that is largely driving aged care's paternalistic culture.
Her recently published research has shown that ACFI drives staff to carry out care tasks that residents are often willing and able to do for themselves. In the process resident autonomy is further eroded; they are no longer allowed to perform the tasks they used to, before entering residential care.
Her research, based on surveys and interviews with 60 residents, as well as staff and relatives, showed residents often wanted to do many of the things that had been taken away from them since they entered residential care.
Moyle emphasizes that she doesn't blame the carers or providers. Rather, the funding regime must change so as to encourage staff to focus on residents' capabilities, rather than on their deficits - as it currently does.
"Take, for example, a resident who used to give himself his insulin," she says. "He comes into a nursing home and that thing he used to do himself is now taken away from him. Instead, it's done for him. There are two issues at play here. One, it's about risk management. And two, it's about ACFI; it's about showing the higher level of care is required. As a result of all this, the care staff end up spending more time on physical tasks, the care tasks, rather than on social or emotional wellbeing."
Moyle, who has been conducting this research in various stages over the past seven years, says all the findings are saying the same thing. "When we looked at the factors impacting on the residents' quality of life, they clearly wanted to do things they had been doing previously. They wanted to maintain their skill set."
She echoes Judd when she says the framework creates a risk averse environment, and risk averse practice.
She uses the example of the specifically designed gardens that many facilities now offer and market heavily.
"You have these beautiful gardens. But, as often happens, the garden is locked, for fear that a resident would go out unaccompanied. Or someone will go wandering. Or someone will go for a walk and have a fall. So, residents are left without the option of going for a walk; a freedom they'd enjoyed all their lives," she says.
Moyle also says that much of this is counter-productive.
If care plans were not so risk averse, if they allowed an element of self determination, there may be a reduction in disruptive behaviours.
"Often, people with late stage dementia demonstrate agitated behaviours. But, if you restrict someone's access to the environment, you restrict their ability to make a cup of tea, or go for a wander; the likelihood is they'll become more agitated. This is all very straightforward, very understandable, and very disappointing," she says.
All of this reminds Greg Mundy of the ABC program The Young Ones.
The aged care commentator and former ACSA CEO tells INsite the documentary illustrated that if you give responsibility and an element of decision making back to the older person "it can make a world of difference".
Like Judd, Mundy says the framework is driven by a view that it's protecting people from harm, "but it actually may be hastening their decline".
"You know, we used to talk about 'institutionalising' people. The institutional model affects everyone in it. It affects the residents, the staff and the management to a degree. There's a mindset within it that says it can't change, it's too hard; we've tried that before years ago and it didn't work. I mean a lot of that is true of aged care."
Mundy feels the Department of Health and Ageing is part of the culture, "and to a fair degree they've acted to reinforce it".
"I remember when the policy around notification of missing residents was introduced and I lobbied against that; I asked them what they meant by 'missing'. Were they saying residents were not allowed to leave facilities?"
As restrictive and counterproductive as the regulatory regime may be, it is certainly not going to change. So what are providers to do?
For Falinski, providers should start to push back, and he says there are three ways of doing just that.
First, he wants to start hearing consumer groups say that they won't put it with it anymore.
"I don't want to hear, 'I don't want anything bad to happen to mum, so make sure she's restrained'. That's not about mum, that's about a guilty daughter or son, or a fearful spouse. I want to hear them saying, 'What can we do to actually ensure mum or dad, or my husband, actually enjoys their life?'
"It's about time the consumer groups actually encourage people to take risks, because life is about risk. As it currently stands, residents of aged care facilities are more at risk of boredom, disempowerment and depression than they are of anything tragic that might occur."
Second, providers need to know the regulations better than the authorities. "No one wants unsafe food. I don't want to be misunderstood. It's about making sure you have good food systems in place. Maggie Beer is passionate about this...She doesn't put any preservatives in her food. But she makes sure she's got the system in place to satisfy authorities."
Thirdly, further regulatory research is needed. "I'm at loss to understand why departments don't engage with the regulatory researchers about what works, as opposed to making up the rules themselves," says Jason Falinski.
Falinski is optimistic about the new model of dementia care she has developed as a result of her research. The model is based on resident capabilities, rather than deficits and already it is producing promising results in its trials.
For Falinski, the changes proposed in the Productivity Commission's draft report might help bring about reform in this area.
"One facet of the PC's draft report I very much support is the opening up of the system to greater diversity. If we broke the mould a bit and didn't put all our eggs in the institutional basket we might get more options. We might end up with options that carry a bit more risk but provide people choice and the room to make decisions for themselves. And some people will chose that option, and they will be better off for it," he says.
Falinski also feels that the more providers question the status quo, the better.
"There are some innovative providers out there like Hammond Care who aren't happy with the current model and realise it's not good for residents and are working to change it. If some providers can break out and do new things, it shows everyone else that there's hope."
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