“I’d rather die in the middle of a street, get run over by a truck or a bus. I would not go into a nursing home” – research participant (Flinders University study)
As shocking as this statement might be, sadly this is not a unique sentiment among Forgotten Australians / Care Leavers. While they may not be alone in wanting to avoid going into a nursing home (now called “aged care facilities”), they do have an especially heartbreaking and compelling reason for wanting to avoid it at all cost.
Care Leavers, generally, can be defined as people who were placed in out-of-home care, that is orphanages, children’s homes, missions or similar institutions, or foster homes, as children. Thus, in their early lives when they most needed the nurturing, belonging and safety of family, they were instead, tragically, placed in situations often devoid of love, affection, nurturing or safety. In fact these experiences were often filled with abuse, cruelty, neglect, deprivation, humiliation, desperate loneliness and extreme fear. Unfortunately, the trauma from those experiences in childhood doesn’t end when they leave the institution or foster home. Childhood trauma creates ongoing, often lifelong, impacts. So much so that, the threat of being re-institutionalised and going back into a similar situation towards the end of their life is harrowing. It is exactly the thing they have never wanted to happen again.
Forgotten Australians are one “group” of Care Leavers. Stolen Generations and Former Child Migrants are also groups included under the term Care Leavers. These three groups are distinct, were affected by different policies, and have their own issues and challenges. However, they all share common stories from their time in in out-of-home care and the life-long impacts those experiences often created. In all, there were estimated to have been 500 000 Forgotten Australians, Stolen Generations and Former Child Migrants.
However, there is good news! Work has been progressing to address some of the concerns and needs of Care Leavers in aged care, both in residential facilities and home care. This work includes research, consultations, collaborations, co-design, pilot programs, roundtables and reports. Put simply, it all points to an inescapable need to fix our aged care system if we want all Australians to enjoy a safe and dignified old age.
The quote which began this blog is from a report produced by Flinders University, in partnership with Helping Hand Aged Care and the Alliance for Forgotten Australians, on their research into Safe and inclusive aged care for Forgotten Australians / Care Leavers. The Report makes recommendations, based on that research.
Some of the recommendations require a strong commitment from the sector for implementation from the top down, and advocacy work continues to push for that. It is clear from the Royal Commission and the recent COVID 19 crisis in aged care facilities, that the aged care sector requires major improvements. This is the perfect time to be designing changes that will deliver on the goal of more person-centred care across the whole sector.
Other recommendations, however, can be implemented right now, by individuals and can actually apply to sectors other than just aged care. For instance,
Recommendation 3: “Avoid making assumptions about family (for example, by asking ‘Which of your family members provides care for you?’). Change language to instead refer to ‘support people’”.
Recommendation 6: “Involve the person in every decision made about every aspect of their care. Consent should be obtained (in some form) for all care tasks”.
Recommendation 7: “Always communicate what is going to happen before it happens. Explanations should not be rushed and Forgotten Australians / Care Leavers should be given time to ask questions, refuse any service, or make changes.”
Recommendation 8: “Always use the person’s preferred name”.
In actual fact, these recommendations reflect common decency and respect and should therefore be applied to every person receiving any form of care at any age. A key argument for implementing all of the recommendations in this report is that they would ensure every older person, not just Care Leavers, receives respectful, kind and comforting care. This is something all of us should want and demand.