Challenging Aged Care Rejection

How do we encourage trust in ageing, dying and the Australian care sector?

Elephants come in many forms. But all of them won’t fit into the average Australian lounge room. Not without knocking over Nan’s favourite crockery or Mum’s favourite settee.

And yet, we’ve invited the elephant not only into the room, but to inhabit the space as we move slowly but surely towards the necessity of care.

Luckily, we live in a country where ageing is where we land before we die. We dangle grandkids, downsize empty nests, plan retirements, and find the version of ageing that suits us best.

But for most Australians, while the plans for adventures and family may be front and centre, they stop short. There is a man behind the curtain in the Land of Oz that is ageing, care requirements and dying.

As practitioners and sector advocates, we know that early intervention matters. We have seen the difference when ageing people accept help early and commit to incremental steps that support wellness and well-being. The impact is dramatic when compared to those who make do in silence. We understand that receiving care helps maintain vital physical, emotional, psychological, intellectual and social wellbeing and that it opens the door to accepting more help as needs change.

Yet we also know that the headlines garnered about aged care are designed to frighten people. And that there are genuine reasons for that fear.

We’re tense about how far behind some of the rollout is. Or how under-resourced or vulnerable we still are as a sector.

And we’re sad because the progress we have made isn’t receiving the same coverage and attention.

I am not here to salt the wounds or question the validity of what can be done. What I’d like to show is that the light at the end of the tunnel isn’t an oncoming train. And that there are things we could do that are not necessarily aged care sector related to help things improve.

“Baltimore is broken. Where should we try next?”

David Simon was talking about the hit show, The Wire, at the Sydney Opera House many years ago for the Festival of Dangerous Ideas. As the showrunner, he’d spent years telling the story of Baltimore’s drugs, crime and underbelly from the perspective of dealers, journalists, politicians and the medical establishment. He loved the work and the people. The dark story was not commercially successful in its time but took on a cult love and gained critical acclaim. It also spawned several community initiatives with policing, youth work and utilising the arts to give at-risk kids and their families alternatives to the worst outcomes Baltimore could offer.

But every time they invited Simon to talk to people with budget and power prior to these community-based initiatives seeking change, he hit the same sentiment.

“Baltimore is broken. Where should we try next?”

It’s moments like this that keep community nerds nodding and people who believe in the power of a street or a suburb to turn things around somewhat suspicious of the more formalised structures that advocate for change.

A place or a system isn’t broken. It may be without a clear direction. It might be exhausted and find the idea of the responsibility of change a little too much to cope with. And even if it is broken to the point of looking like rubble littering the bare face of society, there is still work to be done mending or cleaning up the space for an alternative approach to take hold.

No one place, person, system or idea can transform the world. And neglect, abuse and a run of hard luck can create layers of issues and problems.

But is there ever such a moment where it’s ok to condemn an entire city or a vital system? I don’t think so. Do you?

Innovation is our friend. So too is the painfully na?ve social worker, teacher, concerned parent, neighbour dreaming for a better tomorrow, the outcast with a conscience or principled police officer in a landscape like the Wire.

In aged care, we’re still forgetting the power in not only engaging the people to get them involved in the systems and structures that exist. We’re forgetting that if they need time to trust, we need to give it to them. But we also need to be accepting of what form that trust might take. And that it might look like criticism, advocacy, frustration and grassroots change. It might also look like challenging the poor headlines and the misconceptions, too, instead of allowing guilt and shame to silence our advocacy for the change we’re undertaking.

All of which can be valuable – and most certainly acceptable – in what we are trying to achieve.

Listening to the crowd

No single survey, event or meeting can transform rusted on ideas. Instead of meeting for a cup of tea or a cupcake, we have to come prepared to drink the teapot and come carrying a dozen cakes in the box.

Innovation comes not only from software companies and startups, accelerators and idea building initiatives. It comes from a frustrated adult child wanting to see something better for their ageing parent. Or from the community that loves knowing who is on their street and after building bonds through growing children and taking part as good neighbours, would prefer to help each other age well, too.

Change doesn’t come from an ageing or dying person who is happy to play the game. Usually, it is the insatiably curious, challenging, and even rebellious people who need aged care or palliative care, but won’t be settling for things that don’t feel right or stifle their individuality as the price they have to pay for access.

How we challenge the rejection of aged care and the misunderstanding takes many interesting forms.

These forms can include:

·???????Working with local initiatives and advocacy groups that centre on ageing and dying to understand and achieve their aims. And promoting their good work, even if sometimes they highlight areas of improvement or outright deficiencies.

·???????Embracing the criticism and the feedback as a way of learning what deters them from engaging with the systems before or after their experiences

·???????Adopting an incredibly transparent approach to the financial side of aged care to allay fears about hidden costs, help with budgeting and make a case for the investment in services

·???????Giving nurses and carers the opportunity to spend the time they need listening to people in care and before they get there in community forums, panels and direct-to-market events. Put the caring face (not the corporate or financial side) back on aged care where it belongs

·???????Admitting the mistakes and the missteps. Providing plain language, readable reports and regular updates about the changes made to ensure the same problems won’t present themselves in a different guise

·???????Challenging the stigma surrounding ageing and death. Working with advocacy groups, academics, community groups and healthcare to raise the rates of people that are filling out advance care plans, hearing about age-related to services at the crucial ages of 45 to 60 so that decisions for elderly parents and their future selves are made with appropriate, customised and factual information

·???????Countering health wash and the culture misinformation while actively promoting helpful lived experience advocacy in health, mental health, death literacy and positive ageing

·???????Helping people plan better for the later stages in life. Even if that sometimes means promoting services that are not directly linked to an organisation’s bottom line.

In the short term, it may also be about recognising the importance of people’s questions as they enquire about aged care without the wiggle words. Take, for example, these questions we crowdsourced from people about values-based care and aged care.

Even if it is a tough, long and windy road out of the shadows of rejection, it’s a journey worth the steps, don’t you think?