A year ago on 5 September 2022 I was honoured to assume the role of Acting Chief Executive of COTA SA. It’s a position I love and to which, proudly, I was formally appointed in March this year.

My opportunity to take on the leadership at COTA SA came on the same day that my mother died (age 76), and not quite seven months after the death of my father (age 82). It has been an incredibly challenging time, but one that has provided me with deep insights into the experience of older Australians as they navigate our health and aged care systems. I am pleased to have the opportunity to draw on this in my work advocating for system improvement, and I want to encourage you to speak up too.

Each of my parents died as a result of a terminal cancer. My father Russell’s death came swiftly and shockingly, just six weeks after his leukaemia diagnosis. My mother, Ruth, suffered two agonising years of gradual decline; a process which was confronting and distressing for her and us. Through my experience caring for each of them and acting as their health advocate, I experienced first-hand the challenges of navigating our health and aged care systems. I saw how ageist attitudes can make some people dismissive when responding to an older person’s health concerns (“what did you expect at your age?”), and I observed how an already complex system is made completely overwhelming because those trying to access support are doing so at a time when they are particularly vulnerable.

In the case of my mother, her care needs changed from month to month as her cancer progressed and interacted with other pre-existing health conditions, medication and treatment. She became easily tired, weak, and prone to falling and this prevented her from living her normal full and active life inside and outside her home. Her magnificent plans for post-COVID travel, her ability to drive to the library, or to take her grandson on outings, her appetite for good food, and her preferences to sleep, shower, work and socialise when it suited her, all fell away bit by bit.

Over an extended period, my sister and I experienced carer burn out, living on edge as we waited for the next urgent call about a fall, ambulance call out or hospital admission, on top of a full schedule of aged care, palliative and medical appointments, and keeping her house clean, fridge full and bills paid.

It felt like we could never keep up or pre-empt what care would be needed when, trying to make a slow-moving system work quickly for us. We waited lengthy periods for assessments and appointments. We drowned in paperwork, asset tests and applications. We interacted with multiple government and health agencies, hospitals, practitioners and providers each week, with barely any of these talking to one another to coordinate care that put my mother and her best interests at the centre. It felt like there were fundamental flaws in the system design as we continued to hit brick walls in a maze of options. It felt like my sister and I were expected to be already equipped with the knowledge and skills to know what to do to support our mum through this evolving situation. Ultimately, it felt like we could not help our mother to live her final years without an enormous level of stress or with the quality of life she wanted.

Three months before she died, following a week of three ambulance call outs and one hospital admission, and when we had all reached our limit, my mother decided it would be best to move into a residential aged care facility. It was an impressive set up and mum had a lovely room with French doors opening to a leafy street. She could have wine with her meal and make strong espresso when she wanted. She could have an aromatherapy massage once a week. She received excellent attention from wonderful staff who respected her independence and personal choices. But, like most older Australians, she would much rather have continued to live in her home.

I often hear declarations that older people should not need any special assistance to navigate the aged care system if they are digitally literate or have a family member who can help. There is an assumption that all it takes is access to a computer and a younger person to sit with you while you make a phone call and you should have no trouble at all. I hope that my story demonstrates that it is never this simple. After all, if the Chief Executive of Council on the Ageing SA has trouble navigating the aged care system then what hope does everyone else have?

I am thankful for the help I received from COTA SA Let’s Talk Aged Care team, who were some of the only experts I found who could offer quick, accurate, trusted, independent advice in the most difficult moments. With their helicopter view of the complex aged care system, our team of very caring and knowledgeable navigators always knew who to call and how to advocate in a way that would lead to action.

Every day the COTA SA Reception volunteers receive dozens of calls from older people, family members and advocates who are struggling to navigate through our aged care system and who need our help. Our Care Finder program operating across metro Adelaide is funded by the Department of Health to help the most vulnerable older people with one-on-one intensive system navigation services in their home, while referring ineligible customers to other services and information that we hope can help them. I wish we could do so much more. But more than this, I wish for a system that does not require specialist navigation at all!

Right now, we all have an opportunity to share our experiences of the aged care system and our thoughts on what it should look like in the future. COTA together with the OPAN network is helping bring the voice of older people to the table as the Australian Government undertakes major sector reform through a new Aged Care Act and six funding principles for a sustainable aged care system. Last week’s community consultations in Adelaide and Victor Harbor gave South Australians the opportunity to tell their stories and ask questions about what is being proposed. If you missed the chance to participate in these forums, you still have the opportunity to submit your feedback through a national survey and I encourage you to make your voice heard.

Miranda Starke
Chief Executive
COTA SA