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[Title card animation: Dementia Australia Research Foundation - Care]
[Dr Linda Steele, University of Technology Sydney]
Dr Linda: I am Dr Linda Steele, and I'm a senior lecturer in the faculty of law at the University of Technology Sydney. My interest in dementia and human rights started when I worked as a solicitor at a legal centre for people with intellectual disability. Following that, I began doing research at university, looking at disability and human rights. And in the course of that research, I met Kate Swaffer, who is a leading international activist on dementia and human rights, and she alerted me to the specific circumstances for people living with dementia in residential aged care. And so, meeting her was fundamental to me expanding my focus on disability human rights to the context of people living with dementia.
The problem is that we have a long history in the past 30 or 40 years in Australia of deinstitutionalisation of welfare institutions. We've seen that in the child welfare context, mental health institutions, and disability residential institutions, but we are not seeing that in the context of residential aged care facilities, even though we know they are places where there's systemic abuse and neglect, where there's systemic use of restraint - chemical and physical restraint - where people living with dementia are segregated from other residents, and where there's little ability for people living with dementia to access the broader community.
My research project, which was done in collaboration with Kate Swaffer, associate Professor Lyn Phillipson, and Professor Richard Fleming tried to address this problem by looking at how the disability human rights approach might enable us to see residential aged care facilities as institutions that segregate and detain people living with dementia. And through doing that, provide a basis on which we can push for improved conditions within them, and ultimately, deinstitutionalisation.
Our recommendations centred on the need for a broader discussion around human rights and people living with dementia. There's a need to challenge the assumptions that people living with dementia are incapable of being recognised as full citizens. There's a need to challenge the assumption that they can't speak for themselves and they can't articulate their views, and that they can't express resistance to the circumstances that face them. And there's a need to train people who work in aged care facilities as well as lawyers and advocates, and the broader community around human rights, and how they can and should apply in the residential aged care context.
We wouldn't have been able to have reached these findings without the help of Dementia Australia Research Foundation funding. Specifically, we received a Dementia Australia Research Foundation Victoria project grant, and that was essential to being able to conduct the focus groups, to being able to hold a summit where we brought together a range of people from the community, lawyers, advocates, academics to share the findings, and to produce an anthology on human rights and people living with dementia, which included the perspectives of people living with dementia care partners, lawyers, advocates, and academics. And we provided a copy of the anthology and our project report and publications to the Aged Care Royal Commission and the Disability Royal Commission. We hope that that will impact our work of those commissions.
One problem that emerged from our first project was the matter of redress. By that, I mean, how do we actually respond to or set right the systemic human rights violations that we were seeing occurring in residential aged care? And specifically, how do we do that when some of the things that happen in residential aged care are actually legal, or there's so many barriers to accessing the courts that we can't simply rely on the justice system to provide that redress? And so, in our next project, we are looking broadly at the question of redress - how do we, as a government, as an aged care sector, or as a community, respond to and set right the wrongs of abuse and neglect in aged care?
The project is looking beyond the court system to these other forums for righting the wrongs of abuse and neglect. Through the focus groups, we are going to explore two key areas. The first is redress necessary? Why is it necessary? And what does redress mean for people living with dementia? And secondly, we're going to be looking at the more technical and operational issues of how do we go about doing redress, and who should be involved in that process, and what's the role of people living with dementia, and the dementia community in leading the redress process?
I'm really excited about this new project because in this project, really taking it to the next level in not only providing more recommendations around the Australian legal system, but also looking at how we can forge greater connections with international dementia organisations and overseas academics as well. And I'm confident that with this next project, that will really position me to be able to take on further dementia related projects in the future, and continue my collaborations with people living with dementia, and organisations that are advocating for the rights of people living with dementia. And this is all going to be possible thanks to the support of Dementia Australia Research Foundation, specifically the Dementia Centre for Research Collaboration, Dementia Australia Research Foundation pilot grant.
[Title card]
This research is supported by:
Dementia Australia Research Foundation - Victoria Project Grant
Dementia Centre for Research Collaboration - Dementia Australia Research Foundation Pilot Grant
Faculty of Law, University of Technology Sydney
Dr Steele would like to acknowledge:
The research team (Kate Swaffer, Associate Professor Lyn Phillipson and Professor Richard Fleming), People with Disability Australia, Dementia Alliance International, Interrelate, project advisory group members, and the research participants.
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[Title card]
Dementia Australia Research Foundation:
A cure is just the beginning
If you would like to see dementia research make real impact, donate today:
1300 636 679
www.dementia.org.au/donate-research
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