Rainbow Inclusive Aged Care - Research Updates

Funding restrictions remain: while people have the right to have their needs assessed and to receive quality aged care services, the extent to which these rights can be realised remains restricted by funding and we continue to see rationing of services and wait lists.  This is most noticeable with the Support at Home program with not enough funding released for home care, assessment bottlenecks and workforce shortages limiting the range of services that can be accessed. The recent Productivity Commission report on government services revealed that in the last financial year the median time to assessment increased from 22 to 27 days, and the median time from assessment approval to service commencement increased from 118 to 245 days.

For residential aged care: there continue to be key challenges that threaten the implementation of the reforms. These include resource constraints, workforce shortages and training gaps, market pressures and gaps, and ongoing ageism, ableism and cognonormativity intersecting with gender and sexuality discrimination. The model of rainbow-inclusive care that we are co-creating through this project will need to promote safety and high-quality care as well as be implementable within the existing aged care system, with all its strengths and weaknesses. The model co-creation process is deeply connected to lived experience, such as that articulated by the co-researchers and lived experience advisors profiled in this research update.  

Meaghan: What are some key care needs of older people living with the Human Immunodeficiency Virus (HIV)?   

Neale: Despite HIV being well-controlled and non-transmissible, some care workers still hold fears and misconceptions. This can lead to undue focus on past STI history, breaches of privacy and confidentiality, and discriminatory care. 

Older people living with HIV often have complex, intersecting health needs requiring well-coordinated and dignity-centred care. My husband is a long-term survivor with multiple chronic conditions – not uncommon for our cohort – requiring specialist medical and clinical input for past cancer and repeated surgeries, stoma care and difficult-to-manage asthma along with careful symptom management and medication review for chronic pain, frequent nausea and associated weight loss. Many of us experience age-related decline earlier than expected. 

By 2023, 98% of the 30,000 Australians living with HIV had an undetectable viral load (Health Equity Matters, 2025). For those diagnosed in the 1980s and 1990s when HIV led to terminal illnesses, this shift is profound! Many lived through intense stigma and discrimination from family, workplaces, health services, the media and the law while dealing with the multiple losses of partners, friends and peers. These experiences can contribute to social isolation, complex grief and anxiety about whether health and aged care services will be safe and understanding. 

This is why rainbow-inclusive and compassionate care is a necessity, not tokenism/window dressing. We need stigma-free services that recognise each person’s life experiences and provides respectful clinical, emotional and social support.

Meaghan: What are your thoughts on rainbow inclusion and dementia care?

Neale: As a Memory Lane Café  volunteer for the rainbow community and a contributor to local dementia-friendly activities, I often reflect on what good dementia care would look like for me.  

I enjoy watching classic musicals, and I’d happily watch Singin’ in the Rain and The Sound of Music on repeat. I’d love sing-a-longs of disco anthems like Love is in the Air and It’s Raining Men, and video reels of same-sex couples dancing.

If I experience cognitive decline, I want support that nurtures my emotional and social wellbeing, understands the community that shaped me, and celebrates the full colour and richness of my life, my relationships and the joys that make me who I am. We need champions and allies who can coach staff to respond inclusively, safely and with empathy.

Meaghan: Given the history of health inequities faced by older people living with HIV, what are key issues for end-of-life care?

Neale: End-of-life care must be compassionate and reflect each person’s values and experiences. When the time comes, I want my choices honoured, my advance care directives upheld, and the right to access to lawful options that support a dignified end on my own terms, while keeping me connected to the people who matter most.

That’s one of the reasons researching with LGBTQIA+ older people feels so important to me. There seems to be this strange and persistent idea that LGBTQIA+ people somehow stop existing as they age. Obviously, that’s not true, but when enough people are telling you something it starts to feel like a fact. I see this project as a chance to push back against that, to acknowledge the rich and diverse experiences of all people as the transition into a new phase of their life.

Doing this research in Western Australia also feels especially meaningful. It’s as recent as last year that Western Australia released its first whole-of-government LGBTQIA+ inclusion strategy. Whilst monumental, it goes to show that we have plenty of work to do to continue transforming our culture as a society to be more inclusive and affirming  of LGBTQIA+ rights, including in aged care.

One of the biggest surprises working in this project has been just how different residential aged care environments can be, even within the same organisation. The level of resourcing, the culture of care, and the way staff and residents interact can vary hugely. I’ve also been struck by people’s different journeys into aged care. Some move in gradually and on their own terms, while others arrive after sudden illness, trauma, and often in really difficult circumstances. Those transitions matter, and they deserve care, sensitivity, and respect.

When I think about my own future (fast-forwarding 60 years or so), my ideal day in aged care actually sounds pretty simple. I’d love to wake up without rushing, spend some time reading, sit outside in the sun, and feel part of a community where I feel represented and valued. That’s ultimately what this work is about: helping create spaces where people can age with dignity, autonomy, and a real sense of belonging.