Rainbow Inclusive Aged Care - Research Updates

The survey was developed by the Australian Research Centre in Sex, Health and Society (ARCSHS) in consultation with the project’s National Reference Group, Lived Experience Advisory Group, Management Committee and Communities of Practice.

Senior Research Fellow Dr Ruby Grant led the survey development and consultation, and said:

“Every single survey response contributes to strengthening our ability to advocate for aged care services that are inclusive, responsive, and respectful of all people”.

ARCSHS is internationally recognised for its research in sexuality, gender, health, and social inclusion, and has a strong track record of undertaking large-scale studies that inform service delivery and government policy. Their work includes projects such as the Private Lives survey, the largest and most comprehensive study of LGBTQ+ health and wellbeing in Australia, and the Writing Themselves In series, which explores the experiences of LGBTQ+ young people. Ultimately, the findings will support aged care organisations to implement meaningful change and assist organisations with resources.

Meaghan: You cared for both parents for many years, including visiting in residential aged care almost daily. Can you tell us about your best day, in terms of feeling included?

Emme: After coming out in my art therapy training I started letting some of the nurses know who I really am. I was always sensing who was safe and affirming. My 90-year-old mum fully accepted me and said she’d always known, but she didn’t know the term ‘transgender’. I told mum’s best friend, a woman whose husband was a pastor, and from then on always called me ‘Emme’ and ‘she’. I was blown away. Then COVID came. Until then, some knew me as Emme and others only knew my birth name and assigned gender. I decided that if I was going to be here, I would be 100% here. I let the director of nursing know, and she fully welcomed who I am. It made a huge difference in my sense of safety to have people who loved, cherished and treasured me for who I am. That blew me away. 

During COVID lockdown, I was allowed to come and go anytime, day or night into the high care home. When Mum was approaching end-of-life, they moved Mum’s roommate out and I was invited to stay. The next afternoon Mum said, ‘I'd like you to come and live here.’ So, I did for the last weeks of her life. I just turned up and I was in my dresses and some makeup every single day.

I lived there fully visible as Emme/she until Mum passed. Because there weren't a lot of people coming and going, I wasn't having to negotiate other residents or nurses in the dining room and hallways. That made it safer. Soon all the staff who cared for my mum knew my name, transgender identity and pronouns. I was very much loved and accepted by them, that's what made it really safe.

There was only one guy I wasn't sure about. One day I met him in the corridor, working alongside a nurse who had been fully loving and accepting of me. I explained my identity and story. He said, ‘I’ve always called you “he: and I’ve always called you [birth name]. That's not going to change’. But the nurse just straight away said, ‘that's not OK. This is who she is’. The next day when those two arrived at Mum’s room, the guy called me Emme and used the pronouns she and her. How wonderful to have that advocate!

Advocacy doesn’t need to be fighting or speaking to stir things up more. I’ve seen a nurse who challenged anything anti-LGBTQ+ with wisdom, love, and care. When we’re using services, we need to know, not just hope, that people are accepting, that they’ve been trained. I know how important this would be if I was a resident.

Meaghan: What do we need to do to make accessing residential aged care a real option for people who need it?

Emme: It would be good to have staff who are across all kinds of diversity. It’s not just words or slogans that say, ‘we treat everyone well’. They need to demonstrate clearly and visibly that they are inclusive of different ways of being that people manifest. We don't have to go around telling everyone our sexual, gender and relationship preferences all the time. But there are things that come out as we talk – little signs or indications. Many LGBTQ+ older people are careful to not reveal much, but if staff knew and accepted us, they could read those signs and let us know we are seen and safe.

Because of who we are and our life experiences, many of us have our sensitivities on high alert, and we pick up things that others just don't even know. So, for people who are working in and managing these places, we need them to realise there are things that they don't see and don't know. This isn’t just about addressing the LGBTQIA+ issues. This is about asking ‘how do we make it so it's really safe for all?’ It benefits everyone if we live that out. 

We are humans! There is so much else in our lives other than our gender, sexual and relationship identities and preferences. It’s important to focus on LGBTQ+ AND the rest of us, to make it safe and accepting, loving as they can. 

The day after Dad moved into the aged care home, the nursing director said, ‘We want to give the best care to you, for your family. But there's lots we don't know, and we need you to teach us and help us to learn about how we can make this the best experience.’ That really touched me and I've taken that into my life in many ways.  We can guess what old people need or think we know what they need. But asking, observing, and learning what people need is best. If Dad was on our rainbow spectrum, I’d want to feel safe and affirmed so we could say, ‘We need you to know these things to love him and treat him well.’

We thrive and shine when we are known, loved, safe, protected and affirmed as we are. I desire this for all people in aged care: all rainbow people, all staff, family and visitors.

“What we see is our older people may delay accessing health and social care until they’re in crisis,” says Kedy, “which can mean sudden hospital admissions and unplanned moves into aged care.” Kedy also challenges the well-meaning hospital workers who may not see the wider context of LGBTQ+ older people’s lives and histories.

Kedy sees rainbow inclusion in aged care as essential and is encouraged by the Australian Government’s funding of the MRFF research program on building models of care for LGBTQ+ people. Still, she notes the irony of their decision to cut funding to Silver Rainbow, a training program that has supported aged care providers’ awareness of rainbow inclusion for many years.

As a member of the Community of Practice (CoP), Kedy most appreciates the involvement of co-researchers with lived experience. “They bring such empathy and engagement. The stories and insights they share are incredibly valuable,” she says. The CoPs have been building the project’s research methods and forming the foundations of collaborative practice that will collaboratively analyse the observation data this month, then dive into the interview and survey findings in 2026. In 2027, the CoPs will engage in co-design workshops to build the resources and guidelines needed to implement the rainbow inclusive model of residential aged care.

While she acknowledges there’s still a long way to go, Kedy believes the rainbow inclusive aged care project has a unique opportunity to shift attitudes and practices across aged care. “It’s great to see Amana Living and WMQ, the project’s aged care providers, so enthusiastic and committed to change, and that gives me hope. The challenge is making sure that commitment spreads right across the sector,” said Kedy.

Roy says that while the Rainbow Inclusive Aged Care Project is going to be incredibly challenging, it also presents some big opportunities. ‘The big opportunity is looking at cultural differences. Because when we say “LGBTQ+”, it sounds like we are one homogeneous group of people, but in reality we are from all walks of life, all cultural and linguistic backgrounds, and may never have had the chance to fully express ourselves within our communities, including in residential aged care. How do we negotiate those differences without leaving anyone behind?’

He insists that the project must consider much more than whether residents, staff and visitors are ‘out’ or ‘closeted’. ‘We need to think more deeply about preferences, orientation and identity in the residential care space. There are cultural nuances that need to be acknowledged.’

Roy is also a member of the NSW Ministerial Advisory Committee on Ageing, and has learned a thing or two about policy and systemic change. ‘With this being a longer-term co-design project, we have the opportunity to engage people from different communities. The aged care workforce is highly culturally diverse, and they may not get access to good education and training. We all want more than tolerance, yet there are very complex cultural narratives to understand.’

Aware of the kinds of negative attitudes that can be prevalent in pockets of residential aged care towards LGBTQ+ people and people from culturally diverse backgrounds, Roy points to the importance of good policy that improves wellbeing through building equitable, accessible and inclusive aged care settings. ‘People think because we have same sex marriage and anti-discrimination laws that “you’ve got your rights now”. We got our first LGBTQ+ ageing strategy back in 2017, but strategies sit on bookshelves and are very hard to implement,’ says Roy. ‘The best thing about this project is the co-development of a model with implementable practices and measurable change by understanding real people’s lives’.

‘Take people living with HIV in residential aged care,’ says Roy. ‘It’s not just about infection control, reducing stigma and respecting privacy legislation. In aged care, we also need to think about maintaining the person’s medications, minimising viral load and access to GPs who are trained in HIV primary health care’. Roy also points to the complexity of transgender residential aged care services, again, relying on much more than understanding medication and privacy.

Roy is particularly keen to see a big step up in provision of equity, diversity and inclusion training across the health and aged care sectors, from HIV to LGBTQ+ inclusion and cultural safety with First Nations people. ‘They are our community and we are living longer, we are working in aged care and we are caring for others. A lot of people want to improve the culture of their agencies,’ says Roy, ‘and for that, we need to improve vocational education access. I used to do a regular spot in the aged care certificate. One afternoon is not enough, but it’s about bringing people with lived experience in’.

We’re delighted that ethics approval has been granted to proceed with our fieldwork research at Amana Living and Wesley Mission Qld. This will include observations, interviews and focus groups in 6 residential aged care communities in WA and 6 in Qld. Our co-researchers and lived experience advisors were instrumental in refining the fieldwork methods and working on resources to support ethical research practice. This has included developing a safety protocol, distress protocol and processes to help participants understand their rights and provide consent.  The observations kick off in June and July.

Our partners at the Australian Research Centre in Sex, Health and Society (ARCSHS), La Trobe University, are continuing to develop the national survey for residential aged care workers. Dr Ruby Grant (also profiled in this research update) from ARCSHS is spearheading the design and consulting with lived experience advisors, communities of practice, the national reference group and our chief investigators. Thank you to all those who have provided input into its development. See below for more information on the project stages. 

The project is funded by the Medical Research Future Fund (MRFF) - 2023 MRFF Models of Care for Sexuality and Gender Diverse People & People with Innate Variations of Sex Characteristics - Stream 2. This research aims to:

• improve the quality of care provided to gender and sexually diverse people, and
• increase safety and inclusion of all gender and sexually diverse people living, visiting and working in residential aged care.

Southern Cross University leads the research project, with four other universities involved: La Trobe University (Australian Research Centre in Sex, Health and Society, Rainbow Health Australia, and Val’s Ageing and Aged Care), University of New South Wales (Centre for Social Research in Health, and Ageing Futures Institute), University of Queensland (Centre for Health Services Research) and Edith Cowan University (SAGE Futures Lab). Partner organisations include: Amana Living (WA) and Wesley Mission Qld, along with GLBTI Rights in Ageing Inc, LGBTIQ+ Health Australia, Australian Association of Gerontology, Ageing Australia, and Older Persons Advocacy Network.