Recording: Dementia Justice

Thank you for joining us at today's event.  Before I begin, I want to acknowledge, for those of us in Australia, we are all on the traditional lands of First Nations peoples.  This land was never ceded.  I particularly want to acknowledge the Gadigal people of the Eora Nation, whose ancestral lands our city campus now stands, and it's also where I'm joining you from today.  I'd like to pay respect to Elders past and present, acknowledging them as traditional custodians of knowledge for this land and also acknowledge the traditional custodians from wherever all of you are joining us from, including our panellists.  

  

My name is Verity Firth, I'm the Pro Vice-Chancellor of Social Justice & Inclusion here at UTS, and it's my real pleasure today to be joined by a distinguished panel of speakers, Dr Linda Steele, Kate Swaffer, Yumi Lee, Bill Mitchell, and Theresa Flavin. 

 

eople living with dementia in Australia have been subject to significant harm, including violence, abuse and neglect in aged care.  A new report, Reparations for Harm to People Living with Dementia in Residential Aged Care, finds that government, the justice system, healthcare and aged care providers are failing to recognise, redress and repair this harm and hold those responsible to account.    

  

With more than 480,000 people currently living with dementia in Australia, it's vital to bring awareness to the need for reparations as well as changes to policy and practice around access to justice.  Our panellists today have all contributed to the report, which we're linking to in the chat now for you to access.    

  

It's my honour to now introduce our panellists, Dr Linda Steele, Kate Swaffer, Yumi Lee, Bill Mitchell, and Theresa Flavin.    

  

Dr Linda Steele - Dr Linda Steele is a sociolegal scholar whose research focuses on the role of law, human rights and transitional justice in the perpetration and redress of violence against disabled people.  She is currently leading a program of research 'Truth Justice Repair' through which she is exploring how we reckon with and repair the harms associated with violence, institutionalisation and segregation of disabled people.  Welcome, Linda.    

  

Kate Swaffer is an independent researcher and awardwinning campaigner, international speaker and author.  Her work focuses on human rights, disability rights, and desegregation and deinstitutionalisation of people in residential care homes.  She also lives with a rare form of younger onset dementia and continues to work locally, nationally and internationally.  Welcome, Kate.    

  

Yumi Lee is a peace and human rights activist and CEO of the Older Women's Network NSW.  Her work focuses on advocating and lobbying on issues impacting older women, including housing insecurity and homelessness, and violence against older women.  Recently the Older Women's Network NSW engaged in the 'Ready to Listen' project, aimed at raising awareness of the shocking level of sexual assaults that take place in residential aged care.  Welcome, Yumi.    

  

Bill Mitchell is a Principal Solicitor at Townsville Community Law.  He has written and presented extensively on the human rights of older persons and has been involved in program service design in diverse areas, including elder abuse and disaster legal response.  He has been an expert contributor and presenter to national, regional and international processes on human rights issues.  Welcome, Bill.  

  

Theresa Flavin is an activist and advocate for the dignity and human rights of people living with dementia.  Theresa lives with younger onset dementia and has worked with leading advocacy organisations and the Department of Health to provide them with a lived experience perspective.  Welcome, Theresa.    

  

So we're going to go straight into a panel discussion, but I thought the first question for today would be directed primarily to Linda and Kate.  To start today's discussion, can you tell us what was the catalyst for you to investigate these issues and write your report Reparations For Harm to People Living with Dementia in Residential Aged Care?  Perhaps to you first, Linda.  

  

ASSOCIATE PROF. LINDA STEELE:  Thanks, Verity.  Kate, I don't know if you wanted to provide some of the broader context for the project.    

  

KATE SWAFFER:  Sure, I'm happy to do that, Linda, and thank you, Verity, and also everyone here today to help Linda and I celebrate the launch of this important report, and also thanks to Leah for all of your support and our speakers and attendees.  

  

I think just some background, most of you in the Zoom room today will know that since my own diagnosis of young onset dementia, which was almost 15 years ago, it highlighted the experience of rights violations and that became a catalyst for me to become an activist and then a researcher.  The diagnosis of dementia clearly highlighted the denial of universal health coverage, including rehabilitation and multiple other disability and human rights violations, resulting in a prescription of disengagement from my pre diagnosis life.    

  

So despite dementia being defined as a condition causing major disabilities by the World Health Organization for over a decade, we still have a health sector using a medicalised approach which mostly manages the symptoms of dementia as a pathway to deficits and death instead of as acquired disabilities, which is an approach that could and should be supported to ensure people with dementia have a high quality of life and can maintain independence for longer.  This potentially also can improve support for people with dementia and help us to see that we need to move away from institutionalisation and segregation.  

  

So whilst there's been some positive progress to address the systemic experience of abuse, violence and neglect in residential aged care in Australia to improve outcomes for people with dementia over the past 20 years, or 25 years, we are still facing many of the same challenges.  This is highlighted by more than 20 years of formal inquiries in Australia into residential aged care, including a Royal Commission into Quality and Safety in Aged Care and a Disability Royal Commission, but we find ourselves facing a situation where violations of rights and multiple forms of abuse, violence and neglect in Australian residential aged care institutions continues almost unchecked.    

  

The approach of business as usual in dementia and aged care contributes to this and recommendations from these inquiries have consistently failed to address redress and reparations of violations of human rights in aged care, also contributing to the reality that they continue to occur.  This failure of the Royal Commission led me in part to this project with Linda.    

  

Whilst we consistently fail to stop violence, abuse, neglect and prevent future violations of people's human rights, we are failing all Australians, and particularly those living with dementia and our care partners and families.  Perpetrators of harm must be held accountable for these violations to stop now and into the future, also the reason for this work that we've been doing.  Thanks, Linda.  

  

ASSOCIATE PROF. LINDA STEELE:  Thanks, Kate.  And I guess just to further elaborate on the situation that Kate has described, the Royal Commission into Aged Care Quality and Safety documented that people living with dementia are experiencing wideranging harms in residential aged care, including physical and sexual violence, emotional abuse, misuse of psychotropic medication, and use of restrictive practices, and as Kate noted, these harms violate the human rights of people living with dementia, including those found in the UN Convention on the Rights of People with Disabilities.    

  

Being in residential aged care in the first place is itself a violation of human rights when that decision is made by others without the consent of the person living with dementia and is made in a context of lack of resources and support to live in the community.  These harms have ongoing impacts on people living with dementia, causing physical and mental health to deteriorate and sometimes even causing death.    

  

Family members who have witnessed the harm and tried to intervene, often in the course of doing that being positioned as a problem in the process, experience grief, distress and anger and where family members have supported individuals to move into aged care in the first place, often under the belief it was the best or only option, they can also experience guilt and moral injury from having been involved in the circumstances that give rise to harm.  The existing justice regulatory and political systems have largely failed to recognise and redress and repair this harm and to hold perpetrators accountable.  Litigation is expensive and lengthy.  Complaint processes are experienced as exacerbating trauma and lacking transparency and meaningful outcomes, and government inquiries, as Kate mentioned, have failed to deliver reform.  The Aged Care Royal Commission did not make any recommendations for redressing past harm.  

  

Now, this lack of action in the aged care context is in contrast to official responses to other institutional harm.  For example, we have a National Redress Scheme and a National Apology in relation to institutional child sexual abuse.  So ultimately we found what brought us to this project was that the systems that allow harm to occur are continuing to allow harm to continue to be perpetrated because there's no recognition of the systemic problem and no attempts to repair that.  

  

So our project explored reparations as one way to respond to harm in aged care and address this current justice gap.  Reparations, for those who are unsure what that means, are actions of making amends and of righting wrongs and they can take various forms outside of the aged care context, including monetary payments, apologies, memorials and truth telling.  

  

THE HON. PROF. VERITY FIRTH:  Well, I was going to ask around the key findings of your report, but you've really outlined them in your first responses.  Is there anything else you want to add to that, Linda or Kate, in terms of key findings?    

  

KATE SWAFFER:  Perhaps I'll add to that, thank you, Verity.  There's no research or existing practices internationally on reparations for people living with dementia in residential aged care.  Hence we've been starting from scratch.  We didn't want to just cut and paste from other contexts because we wanted reparations to be designed by the community of people with dementia and their care partners and those that work in that area and respond to their needs and experiences.  So we ran focus groups with people living with dementia and care partners and family members as well as formal advocates and lawyers to ask whether they thought that reparations are necessary and, if so, what the forms and processes of reparation should be.  

  

THE HON. PROF. VERITY FIRTH:  Linda, did you have anything to add?  

  

ASSOCIATE PROF. LINDA STEELE:  I guess just briefly that in speaking to people through the focus groups, we had unanimous support for the need for reparations based on the failure of existing systems, the justice system, complaints systems, and so on, and also that recognition that if redress has been delivered for other groups in the face of widespread harm, that really also needs to be brought to the aged care context to ensure the equality of people living with dementia and also as a way to humanise them in the face of dehumanisation and them being devalued and also as a way to bring about a sense of recognition of what has been occurring and also validation given the ways in which people living with dementia trying to speak out, or care partners and family members trying to intervene, is often encountered with an experience of being disbelieved and problematised and pathologised in that.    

  

So it's really about recognition and accountability for what has been occurring, but ultimately about change as well.  So people told us that apologies, monetary payments, anything like that will simply be tokenistic if its ultimate goal is short of a drive and action to actually change and transform the system.  So people really recognised that we can't fix the past, but we can certainly learn from that and take meaningful, concrete action to ensure that that is not going to happen in the future.  

  

THE HON. PROF. VERITY FIRTH:  I might open up now to some of the other panellists.  Theresa, maybe coming to you first, why are reparations needed for people with dementia in aged care and what type of reparations would you like to see provided to those affected?  

  

THERESA FLAVIN:  I think I actually struggle with the question why are they needed as in why wouldn't they be provided?  It just  I really can't quite understand the difference between a person living with dementia being excluded, locked up and all of those things and a younger person.  Why are we different, and I think it's coming back to our culture of utility and this model of you're not useful.    

  

The way I see it in the community is that older people, once they become a little disabled, a little infirm, are placed in the equivalent of cold storage, out of sight out of mind, but when you've got dementia you're in the deep freeze.  We call it care.  It's not.  It's just keeping bodies alive.    

  

When that goes wrong, reparations are needed because, the same as anyone else in the community, we'd like to be placed back in the position we were in before the abuse, and that can take many, many forms.  But one thing that's often overlooked is the need for some sort of emergency provision so that when someone is being severely abused, or has been, they can be effectively airlifted out of that horrible situation.  The expectation of the community is that the person will continue to live in that room with the same staff with everything the same and just wait for someone to come with some cash or some sort of reparation and it's simply not good enough to leave people in the same traumatic, frightening situation, and I think a lot of thought needs to be given to the first aid that we give to people who are in this situation and enabling people to move from one facility to another when abuse has occurred without financial penalties.  

  

THE HON. PROF. VERITY FIRTH:  Mmm, it's a really good point.  Bill, do you have anything to add to this?  

  

BILL MITCHELL OAM LLD:  Just to say that I think that it's a good example of where we see intersectional impacts and I realise that not all people with dementia are older persons, but where they are older persons, they are doubly invisible but for the negative impacts that problematise them.  So I think reparations are an important aspect in dealing with structural ageism and how it intersects with ableism and, of course, with any other structural inequality.  So this is very important to bring to light the specific needs of those who are living with dementia, but also to shine a light on the various abuses that they experience within various institutional care settings.  

  

THE HON. PROF. VERITY FIRTH:  And Yumi?  

  

YUMI LEE:  Thank you, Verity.  I'd just first like to acknowledge that I'm joining you from Darug country and pay my respects to all First Nations people present.    

  

I would like to respond to that question by deconstructing the word "people" because the majority of the people that we talk about who are in aged care are women.  So 2 in 3 people living in aged care are women, especially when we look at the demographic above 80, and nearly 70% of residents have moderate to severe cognitive impairment.  So we're looking at a cohort of very vulnerable older people, the majority of whom are women, who are having to survive an aged care system which doesn't serve their needs.    

  

We know the Aged Care Royal Commission exposed some of the horrors perpetrated in aged care, and as Theresa and Linda and Kate mentioned, sadly, it still continues today.  You know, we have 50% of residents who are malnourished; 40,000 serious incidents reported to the Aged Care Quality and Safety Commission in the 2021 to 2022 financial year, and that includes about 50 sexual assaults taking place every week in aged care.    

  

So it appears that demanding reparations for the harm perpetrated against people with dementia in aged care is one strategy that we should pursue.  This is absolutely necessary because the system we've put in place to provide safeguards and to protect the elderly receiving aged care, we have to admit it's just not working.  It's all set up in favour of providers, especially the large forprofit providers who've just been allowed to operate with near impunity.  

  

I mean, if we just look at Bupa, for instance, at the end of 2019 half of the nursing homes run by Bupa were failing basic standards of care, with 30% of them  you know, they were putting the health and safety of the elderly at serious risk.  That's 30% and yet those homes were allowed to continue to run because the Government wasn't bold enough to close Bupa down.  I mean, we've really created a monster that's just too big to kill.    

  

We've seen maggots growing in residents who are literally starving to death, ants crawling out of bandages, and yet not a single provider has been held to account, not one government department has been held to account, not a single aged care executive has been held to account.     

  

Instead, providers are being protected to pursue detrimental and dangerous practices by the Government through, for example, schedule 9 of the Aged Care Act, which gives immunity to providers from both criminal and civil claims for the use of restrictive practices without having obtained lawful consent.    

  

I mean, this is truly incredible and mind boggling.  It means the Federal Government has granted aged care providers immunity from key legislation enacted by all the states and territories, and that includes immunity from consumer law, the common law crimes of unlawful restraint, assault and battery, and writs of habeas corpus.    

  

Now, if we are to consider the findings of the first national audit of psychiatric medication prevalence in aged care homes, we can see why the providers push for this because nearly twothirds of the residents are being prescribed psychotropic agents regularly, with more than 41% taking antidepressants, 22% antipsychotics, and 22% of residents taking benzodiazepine.    

  

So in answer to the question to the type of reparations I would like to see provided to those affected, you know, we can refer to the UN Convention on Human Rights, which says that victims  all victims have a right to reparation.  The redress must provide the range of material and symbolic benefits to victims or their families as well as affected communities and reparations has to be adequate, effective, prompt and should be proportional to the gravity of the violations and the harms suffered.  

  

So financial compensation is just one part of it.  The other part, as Theresa mentioned, is the settings, the practices, the ecosystem which enables the perpetration of the violation of the rights of people with dementia.  All of this should be dismantled really.  That's when we get real reparation.  

  

THE HON. PROF. VERITY FIRTH:  Yes.  That's a perfect point to lead to my next question, Yumi, because all of you have talked about really the fundamental structural or systemic issues we're facing.  You know, Bill talked about structural ageism.  Linda, you talked about how when you talk to the community, when they talk about reparations, yes they're saying recognition, yes they're saying accountability, but they're also saying they want reparations to lead to change.    

  

So how can reparations change systemic issues?  Often reparations are individual solutions.  How do we make sure that this call for reparations actually changes systemic issues?  Who would like to go first?  Linda?    

  

ASSOCIATE PROF. LINDA STEELE:  Yes, thank you.  Thanks, Verity, and thanks to all the speakers for their thoughts.    

  

Yes, so I guess reparations can be individual in responding to the impacts of past harm and to providing monetary payments, rehabilitation, legal services, and so on, to assist people in addressing the impacts of that harm and how it's impacting their lives and bodies and so on, but reparations also operate at the collective level as well and can be directed towards not only looking back to what's happened, but looking forward to how we prevent harm in the future.  So that could be when reparations take the form of truth telling and that can provide opportunities for people to share their experiences of harm or witnessing that harm and that in itself is important in validating those experiences.    

  

As I said, in aged care often people aren't believed or are problematised when they try to raise issues that have occurred, but also that then provides an opportunity for the broader public and for government and aged care providers to listen and consider what that truth means for their own practices and their own accountability and then relatedly to work together with people living with dementia as leaders in this process in designing systems that are going to overcome the particular problems and causes of harm in the past.    

  

So that truth telling can be particularly important as a foundation for reform because it's directly linking any reform or, more importantly, transformation to the lessons from the past and while we do have a current situation where there is a lot of momentum in government to reform the aged care system in light of the Royal Commission, it's not clear that that process is really acknowledging and engaging with what has come out of the Royal Commission in terms of those past harms.  If one of the main past harms is use of restrictive practices, well, what does that mean for then designing a system in the future that will actually prohibit the use of restrictive practices moving forward?  Instead, we're seeing that restrictive practices are being allowed.  So that's an example where reform is happening, but is not in a reparative framework because it's not engaging with and learning from the past to inform the future change.  

  

THE HON. PROF. VERITY FIRTH:  Bill, you had a view you wanted to express?  

  

BILL MITCHELL OAM LLD:  Look, I think if the central tenet of the disability convention is deinstitutionalisation, we're still in a situation here where we're in a rights vacuum for older persons.  Aged care is seen as an absolutely acceptable default position.  Why aren't we talking about deinstitutionalisation as the driving imperative?    

  

The main reason for that is that we don't have an international convention on the rights of older persons.  There's no normative pressure brought to bear on member states in this regard.  Nor does Australia have a set of national human rights standards that are enforceable by people, and nor does Australia have an Aged Care Act that is based on enforceable human rights.    

  

We're told that this is being developed and yet all I'm hearing is that it's watering down to a consumer rights basis.  And so it's critical that government right now in the design of the new system, in the absence of proper normative standards, take these issues very seriously.    

  

So I think the Federal Government has been very relaxed and comfortable about the situation, notwithstanding decades of inquiries, notwithstanding the issues Yumi reiterated from the Royal Commission and the Commission itself.  Why do we have a Commission into Care Quality and Safety when in fact the Disability Royal Commission is about violence, abuse, neglect and exploitation, because that's driven by the disability convention.  We don't have the same pressure brought to bear.  So it's time that government stepped up and really embedded human rights, including the right to reparations, within a national scheme.  

  

THE HON. PROF. VERITY FIRTH:  Kate, what would you like to say?    

  

KATE SWAFFER:  I'd like to add to Linda's and Bill's comments really, and Linda, particularly your comment about truth telling.  During the Royal Commission into aged care, there was a lot of truth telling by family members of people with dementia or people living in residential care and also by some people with dementia, but there's been followup harm that people like myself have experienced because of the lack of change, because of the lack of implementation of any of the 148 recommendations, because of the lack of any recommendation that talked about redress or making perpetrators accountable.  That's another form of harm that we're experiencing because of a Royal Commission which is meant to make things better.  

  

THE HON. PROF. VERITY FIRTH:  Yumi, how do you think reparations can change systemic issues?  

  

YUMI LEE:  Well, Verity, I worry that, based on the current settings that we have, reparations will just be written into the business model and there will be no change because we don't see the commitment to really get to the heart of the matter in aged care, and as Bill mentioned, it is one  we really need to put the human rights of older people at the centre and we need to recognise that aged care is not a commodity and it just hasn't worked to leave it up to the market to decide how best to deliver care.  

  

I can bet I think with more than my KitKat that none of us on this webinar and our likeminded colleagues and aged care advocates who are online have been consulted in the drafting of the new Aged Care Act, for example.  Last Friday Greens Senator Janet Rice brought a group of aged care advocates together in person and online and not one of us were involved in the drafting of the new Aged Care Act.    

  

We have a situation where aged care providers have paid lobbyists, they indulge in political donations, and they've got the system set up to suit their needs and the people who are vulnerable, the ones in aged care, those of us who are advocating and helping to get their voices out there, we just don't have those resources at all.  So the whole system is unfortunately rigged against us at the moment.  

  

THE HON. PROF. VERITY FIRTH:  Theresa, do you have anything to add?  

  

THERESA FLAVIN:  I do.  From my perspective, residential care is looming in my future.  It's certainly not going to be a choice for me.  For most older people living with dementia it's not a choice.  We're funneled because of the policies and I refer to Bill and what he said, because the aged care packages for home care are so small and the supplement for dementia care is something around $16 extra a day to help support someone living with dementia in the community, we can't stay in the community at a certain point in the disease trajectory.    

  

So from where I'm sitting, I see a government that is guaranteeing and underwriting a market and that just makes me feel really ill that not only are these providers shielded and protected by things like schedule 9, their market is effectively guaranteed by the policies and the continuation of policies that were set back in times where we had stay at home mums and people could afford not to work, working was a choice, and we have all of these social constructs that are no longer relevant built into the context of aged care funding, including this context that you really shouldn't have too much on the taxpayer dollar.  And these sorts of concepts that are embedded for us means that the only way we have to address this is through clear obvious and public reparations, including acknowledgment and public acknowledgment and a denial of an ability for these organisations to shield themselves from these negative consequences.  

  

THE HON. PROF. VERITY FIRTH:  So Bill, we've all just been talking about the numerous formal inquiries that have been happening over the last two decades, obviously most importantly the Royal Commission.  It's uncovered significant harm.  All of these issues have been, I suppose, brought to light through these inquiries.  Why hasn't there been more improvement to date?  

  

BILL MITCHELL OAM LLD:  Well, I think the simple answer is that when you talk to government, you discover very quickly that the human rights of older persons is simply not a priority.  It means that they don't attend places like the Openended Working Group on Ageing to contribute to discussion around a new convention or new normative standards.  They don't engage in widespread consultation about where the Aged Care Act might go.  Certainly I've not been consulted in any way, nor have many people I know.  

  

But I think the deeper problem is that at a national level we do have a commitment nationally to move with some kind of due act in a way that is so quick that it has to simply miss out on the key issues that we're talking about here today.  It will pay  you know, tip its hat to the Royal Commission's report, which as I've said, in itself was completely inadequate and completely deficient.  It recommended only one enforceable human right, which was in respect of restrictive practices, and it also cobbled together a hodgepodge of human rights which are all about, again, projecting the right to care, which of course is critical, with no emphasis on the right to not be in care in the first place, the prevention of institutionalisation.  You know, the CRPD committee has released its guidelines on deinstitutionalisation and the principal first point this is not even really in the picture.    

  

So I just think it's not a priority for the Federal Government and I don't know why it isn't.  It should be as front and centre national priority.  

  

THE HON. PROF. VERITY FIRTH:  So I'm going to move to the questions from the audience soon, but before I do that, I do want to ask how we can ensure that any actions taken to address issues faced by people with dementia are led by people with dementia and their families and care partners, and I might come to you first on that, Kate, and then to you, Theresa.  

  

KATE SWAFFER:  I was hoping you wouldn't do that, Verity.  

  

THE HON. PROF. VERITY FIRTH:  Oh, sorry.  

  

KATE SWAFFER:  No, that's quite alright.  I think that when I was first diagnosed with dementia, I very quickly realised that I was attending events and conferences and meetings about dementia telling me what was best for me and how I felt by people who didn't themselves have dementia, so that initially was what kind of inspired me to have a voice.    

  

But still having a voice as a person with dementia is especially hard.  You tend to be left out of lots of meetings, particularly if you have a known different opinion on a topic, so not just left out, sometimes actively excluded.  Sometimes in the advocacy space, including in research, it's often the same voices of people with dementia, so it's not representative of the broader community.  We don't have diverse representation yet of people with dementia almost anywhere at any meeting.  And I think it's great that Theresa is going to the UN soon for the Openended Working Group meeting.  I've been there for the Conference of States Parties on the CRPD and curiously found that one of the most disability inaccessible meetings that I've ever been to.    

  

So I think we just have to keep working on having a voice, but much, much more than a voice.  I'm kind of tired of the old we need to have a voice of everybody.  We actually need action and change and we need people who are causing harm to become accountable, to be made accountable.  

  

THE HON. PROF. VERITY FIRTH:  What do you think, Theresa?  How can we ensure that people with dementia and their families and care partners are part of the process?  

  

THERESA FLAVIN:  I think  I have a sense that the Government are quite interested in this concept.  However, it looks like it's going to be extremely clumsy in its approach because, again, coming back to the fact that we are not designing it ourselves.  And the difficulty from where I sit is that there is no framework to support through a voice equality in this conversation and, for example, when I tried to develop a framework to support consultation, to support consistent engagement of people living with dementia, the professors that saw it were so frightened by the change that they would have to implement that it was immediately not funded.  That will never be funded when the people that are making those decisions have something to lose.  And that's where we're at in this journey at the minute where we want an equal seat at the table.  That will not be given to us because that involves changes of attitudes of primarily older men, unfortunately  sorry, Bill  but older men who have vested interest in inertia.  And that's where I see it at the minute is trying to burst through this inertia of people who have vested interest in nothing changing is really difficult because we are individuals living with dementia probably the most powerless cohort in Australia.  

  

THE HON. PROF. VERITY FIRTH:  Is there anyone else on the panel who wants to talk explicitly about how we ensure the voices of people with lived experience?  Yumi.  

  

YUMI LEE:  Not exactly, you know, addressing it directly, just referring more to the culture around the act itself because, you know, the question of how can we ensure those who are impacted the most are included, I think it can only come about when there is a general acceptance in a community of the sanctity of life and of all life regardless of your age, your gender, your sexual orientation, ethnicity and ability.    

  

COVID has really proved the harsh truth to us, which continues to be told to us weekly, that the lives of older people are not as important as the lives of others and this was also shown up by the Robodebt Royal Commission, you know, where we saw that the lives of those who are on "welfare" were seen as less important because they're painted to be undeserving of being supported.  They were painted out to be dole bludgers.  And similarly, you know, our elderly are not seen as productive economic contributors and they're at the last stages of their lives, so there is no concerted effort to fix the system to support them.  

  

THE HON. PROF. VERITY FIRTH:  I might move  if there's noone else who wants to add to that, I might move to some of our questions from the audience.  Bill, I know that you were saying that noone has yet got in touch with you about the Aged Care Act, but I think it is quite a good question from Yvonne around how can we use this study to impact on the Aged Care Act.  We've got this piece of work now, how do we actually make sure it has an impact on the drafting that is now happening?  Bill, do you want to take that first, and then maybe Linda?  

  

BILL MITCHELL OAM LLD:  Yes, look, sure, and I notice that Val Fell has also responded in the chat box to say that the Council of Elders is engaged in the consultations, as have many persons through the hub.  But I want to differentiate between those sorts of consultations, and I don't mean you, Val, but online, largescale formal consultations, they would be an example for me that are not meaningful.  I mean the opportunity to sit down with the people drafting this to make sure that they do actually have front and centre and the words are important.  You can talk about rights and that's a neat way of actually making sure that perhaps you're not talking about human rights, perhaps you're talking about consumer rights.  So the words are important.  

  

The centrepiece of the legislation has to include strong objects that are about recognising, embedding, promoting and enforcing human rights and you also need to spell out what those rights are.  It's not enough just to  I'm not going to take them just on their word that it's going to be centred around those issues because I've heard that many times before and it doesn't necessarily come to fruition.    

  

So I think meaningful consultation with the words is important.  That may happen through the committee process, but at this stage what I'm seeing is a lot of behind closed doors talks that are not in the domain of the broader community or even in the broader domain of some of the interest groups, such as the organisation that I work for.  

  

THE HON. PROF. VERITY FIRTH:  Linda, do you have anything to add to that in terms of influencing the Act?  

  

ASSOCIATE PROF. LINDA STEELE:  I guess just to note that there's probably a lot we can learn from other contexts, such as, say, the NDIS legislation that says that it's about upholding human rights, but then in its substantive provisions goes on to allow all kinds of things, such as the funding of services, it allows segregation and violence through restrictive practices.    

  

So I think that, going to Bill's point about human rights being meaningful in legislation, it's not enough to just simply refer to a convention or to come out with a blanket statement that, you know, this legislation will further human rights.  If there's no alignment between those general statements and substantive provisions that are actually about how aged care services are going to be provided, then they're completely meaningless and they undermine the potential of human rights.  So if aged care legislation is still allowing restrictive practices, is still allowing institutionalisation and segregation and discrimination, then any statement about human rights is completely false and is simply there to try to placate people.    

  

And just as another note, the Government is currently developing a national action plan on dementia and that contains no reference to human rights, so that's kind of one even more aggressive compared to any aged care legislation, but goes to this idea that it's really not a priority for government and it's not really a way in which we're framing the issue.    

  

I just wanted to flag, sorry, before you go to the questions, Verity, before I miss the opportunity  I just wanted to thank the project partners, People With Disabilities Australia and Dementia Alliance International, and our advisory group members and all of the research participants that spoke to us.  Going to that question about how we include  involve people living with dementia in change, we're trying to make this report and the projects part of that change and we really  Kate and I really acknowledge the weight of responsibility we have, having spoken to so many people and heard their experiences and what they want.  Yes, so we certainly acknowledge that and hope that we can  one way in which we can show that they have been included in the research is to follow through and continue to advocate for these issues.  

  

THE HON. PROF. VERITY FIRTH:  Yes.  So one of the questions which has a large amount of upvotes, so I feel I should follow democracy, is from Amanda Crombie, who wants to know what actions can we take as a community to hold perpetrators to account.  She goes on to say that she's spent the last decade and a half "observing ongoing harms being perpetrated against people living with dementia and voicing my concerns into a chasm.  Residential aged care in my community is so beyond acceptable, I hold the view that those living with dementia who need support are better off staying at home and doing the best they can do on their own because at least they will not have others causing them harm".  So this is really around actions that we can take as a community to hold perpetrators to account.  Who would like to talk about that first  Yumi?    

  

YUMI LEE:  Thank you, Verity.  I think the question is an excellent one and I think it speaks to how we see ourselves as a nation and each one of us being active participants in shaping the type of country that we want to live in and we have to I think join groups, you know, be part of collective action.  Individually we can do so little, but collectively we can do a lot more.  We can use our collective voices and power to effect change.  

  

I think it is important for all of us to be more active in getting change to happen and it is absolutely massive.  You know, the aged care industry generates millions in profits for providers and they will not let go of this so easily and we really need concerted action.  And, you know, we have advocates on this line who have been on this issue for decades and I'm sure, you know, they would like to see change happen sooner rather than later.  So I think we as advocates need to find a way where we can harness our collective power to do more.    

  

I think where do we start?  You know, there is also the media which is controlled by certain elements that drive certain narratives.  So everything is so interconnected.  You know, the people living with dementia who are suffering in aged care facilities are an integral part of our community and fixing things for them will fix a lot of other things for others as well in the community.  

  

THE HON. PROF. VERITY FIRTH:  That's so often the case, isn't it?  Does anyone else want to talk about community pressure?    

  

KATE SWAFFER:  Yes, I'd quite like to, Verity.  I think that we have a challenge in getting the community to engage in the need for things like reparations or accountability of violence, abuse and harms in residential aged care because apart from news stories, most people don't really believe it happens.  It's that old "it happens to other people's family, but it wouldn't happen to mine".  And so many people in the community have been active in placing someone they love and care for into an aged care facility, so to face up to the fact that the person you love is being abused and I've done that, I've had to do that, is really confronting.    

  

So sometimes there's a bit of a  we need to bury our head in the sand partly because there's no other alternative accommodation for people with dementia who need to be in some sort of assisted living environment.  So currently in almost all states the only option we've got is large institutional settings which are segregated and locked.  So there's a lack of awareness in the community about what we need to change.  

  

THE HON. PROF. VERITY FIRTH:  Mmm.  Bill?    

  

BILL MITCHELL OAM LLD:  I just wanted to let people know that there's some building momentum with a group called Rights of Older Persons Australia, or ROPA, and that includes many, many peak bodies who work in this area, particularly around older persons' interests, not just across aged care.  So there are certainly organisations that are mobilising around this issue, but unfortunately members of the general public still haven't really moved like they should, notwithstanding what they saw in Four Corners and in the Commission.  So I think we need to make sure people know about the issue as well and understand just how dire it can be for some people because awareness is critical to the moving forward.  

  

THE HON. PROF. VERITY FIRTH:  Theresa, would you like to comment on that?  

  

THERESA FLAVIN:  Yes, I probably would echo everyone else's suggestions and frustrations on that.  It is really difficult to combat the fear that we all have.  You know, we all know someone who's had a bad experience in residential aged care and the guilt and the pain and because it's a round robin situation because there isn't acknowledgment and because there isn't reparation, we know it's a dead end and you just sort of do the bury your head because it's just all too much.  But again, our voices together combined may make some change and it's probably the best thing  maybe as a group we can put out email or some sort of circulation of some groups that are worthwhile joining that will give us a voice that have interest in this.  I think that might be a really good start.  

  

THE HON. PROF. VERITY FIRTH:  So I'm going to ask one more question from the audience and then a final question of my own.  The question from the audience is from Anthony Brown and he makes the point that it's not just the aged care sector that harms people with dementia, "How do we draw other sectors, such as health"  sorry, it moved on me  I think it just got taken off.  It got answered  anyway, I can now read it to you.  "How do we draw other sectors, such as healthcare, into this discussion on accountability and reparation?"  I thought that was a good point.  So it's not just the aged care sector.  It's obviously an intersection with other government agencies and services.  Who would like to have a stab at this one?  How do we draw other sectors into this conversation  Bill?  You're muted.  

  

BILL MITCHELL OAM LLD:  Human rights are indivisible and interconnected and inalienable, so if we provide people with proper human rights, then it shouldn't matter what the setting or placing is.  They should be able to access the same rights irrespective of their setting.  So for me, universality of human rights is the critical point here.  

  

THE HON. PROF. VERITY FIRTH:  And Linda, what would you like to say?  

  

ASSOCIATE PROF. LINDA STEELE:  Just that our project  obviously there was a lot of focus on the role of aged care providers and the boards and managers of aged care facilities, but people also spoke about the importance of accountability and repair in relation to healthcare providers, particularly if they are involved in restrictive practices and forced medication, and also the legal profession as well.  And as a member of the legal profession, I certainly recognise the role of law in this, not only because most of what happens is completely legal, which shows the way in which the legal system and lawyers and judges, and so on, are complicit in this process in practice, but also because at an individual level restrictive practices, forced movement into aged care, and so on, is enabled by guardianship law, restrictive practice laws, and so on.  

  

So I think we've got to really, yeah, take a broad approach to the various professions that are complicit or implicated in these practices and look at engaging professional associations, unions, and also the universities as well because if a lot of this, what's happening is considered ethical and legal, you know, we've got a lot to be accountable for in the university sector for what we teach and the kind of knowledge we generate that provides a foundation for these practices to occur.  So that's about how we're approaching our teaching of future professionals, the kind of research we do, and thinking about accountability in academia as well.  

  

THE HON. PROF. VERITY FIRTH:  Yes, that's a very good point.  Alright, well, there's five minutes to go, so I'm just going to ask my final question of each of the panellists.  I will say that Phillippa Carnemolla has said a very nice message in the Q&A thanking us for raising the importance of inclusive practices, "We can learn from inclusive practices in other sectors, including research policy led by people with intellectual disability.  This webinar is a call to action that inclusive practice is critical in research in this area", and I think that that's spot on.    

  

So my final question to everyone is a positive question, hopefully, ending on a little bit of a higher note, which is what do you hope will change with the information made available through this new research and of course the accompanying campaign for dementia justice?  And I might start with you, Yumi, what do you hope will change?    

  

YUMI LEE:  Well, I thank Linda and Kate for this research because it really highlights the fact that we have a very vulnerable group of people whose rights for safety and care are being violated on a daily basis.  If we flipped the age groups and if it were children in school who were being neglected and abused in this manner, there's no question that heads would roll.  You know, the Aged Care Royal Commission stated that about 39% of residents are abused, so if 39% of children in our schools are being abused in a similar manner, what do you think will happen?  So I think this research enables us to stop and interrogate why we are not collectively outraged.    

  

And I'm hoping the campaign will lead to better staffing, and by this I mean both in terms of training and numbers for aged care because people don't go into aged care as a lifestyle choice.  They go into aged care because they can't care for themselves anymore.  It means they really need assistance provided by trained staff, and that includes training on the specific needs of people with dementia and the poor understanding of dementia can be seen in the fact that aged care staff believe that in 58% of cases of sexual assault there is no impact on the victim.  And just this morning in the Sydney Morning Herald there was the news article about an 83yearold woman with dementia was not believed when she reported three times about being sexually assaulted.  The facility manager said something like "that would never happen here" because she knows all the staff.  It's time to upgrade our knowledge base, our compassion and our resolve to get things right for some of the most vulnerable people in our country.  

  

THE HON. PROF. VERITY FIRTH:  Thank you, Yumi.  Linda, what do you hope will change?  

  

ASSOCIATE PROF. LINDA STEELE:  Well, yes, I mean, I guess I hope that we will have more recognition of the need to take the kind of approach that we've taken in other contexts such as with the National Redress Scheme and National Apology, and so on, in the context of aged care and for people living with dementia and to stop having a situation where the human rights, the justice available to people living with dementia is substandard or nonexistent and also, though, really looking at our mainstream justice processes.  Just as much as people living with dementia should be equal in terms of accessing specialised reparations, they should also have equal access to justice through our courts and complaint processes, so those really need to be fixed as well.  

  

THE HON. PROF. VERITY FIRTH:  Thanks, Linda.  Theresa, what would you like to change?  

  

THERESA FLAVIN:  Well, I'm hoping that this report will bring some attention  in the community we've got this sort of sense of security that we live in the west and we have human rights and if someone is harmed, that harm is addressed and we have this sense that everything is okay.  This brings us to a really pain point where we realise there is a part of our community that are not being treated fairly.  So by the time that we encounter that in our own lives, we have this information say actually that's not fair and I can point to this report to show you why it's not fair.  So this, if anything, is giving us a little bit of ammunition so that when we come to that point in our own lives when it's our own family member that's affected, we have a little tiny bit of a shard of something to begin that individual fight that whatever proportion of us here today will have to fight when it comes to our own time.  

  

THE HON. PROF. VERITY FIRTH:  Bill?  

  

BILL MITCHELL OAM LLD:  Well, I hope that people living with dementia become visible rights bearers as opposed to invisible objects of charity.  I think if this can help along that way, then that's a big help.  

  

THE HON. PROF. VERITY FIRTH:  Wonderful.  And last but not least, Kate?    

  

KATE SWAFFER:  Thanks everyone for such great sort of final comments about what you would like.  I would really like to see the law changed in so many areas so that there aren't loopholes for aged care providers who aren't providing adequate care  for example, poor nutrition or no oral hygiene  I would like to see some legislation changed so that people are made accountable for that, but also when you look at the vulnerability of people with dementia, it's not just an Australian issue, it's absolutely global and anecdotally all of the work that I've been doing around the world with people with dementia or attending events, it's the same problem, just a different reason for the problem, but generally it's the marginalisation, the paternalism and that everybody without dementia knows best for people with dementia, not themselves.  

  

THE HON. PROF. VERITY FIRTH:  Mmm.  Well, thank you to our panel.  You've been absolutely wonderful today.  We really appreciate your time to talk to our audience.  Thank you to the audience for attending.  We've had wonderful participation throughout this session, so thank you.  Everyone who registered for this session will also receive a link with a recording, so please share it far and wide.  That can be part of the campaign for dementia justice.  So thanks again, everyone, and we'll see you next time.  

  

KATE SWAFFER:  Thanks, everyone.