I recently sat down with Robert Fitzgerald AM for the new podcast, WTFH - Where To From Here? The podcast looks at what makes a good life as we get older. Robert Fitzgerald is Australia’s Age Discrimination Commissioner and has spent much of his working life thinking about ageing, community and the systems we build around people.
One issue kept surfacing in our conversation: who gets to make the decisions that affect us as we grow older? Most of us will eventually need more help. Good support should make it easier to live your best life, it shouldn't take control away from you.
When care becomes a service system
Robert makes an important distinction between a care system and a service system.
Robert was a Productivity Commissioner when the Commission recommended the creation of the NDIS and the shift towards greater choice and control. But he argues that the NDIS became increasingly individualised, transactional and fee-for-service. It became a new service system but relationships and connection were weakened.
There is a warning here for Support at Home.
Support at Home needs assessments, budgets, prices, service categories and safeguards around public money. But there is a point where the machinery designed to support care starts shaping the care itself.
We can already see that tension in the care partner role. Care partners deal with budgets, service coordination, compliance and transactions. All of that has a purpose but all of it takes time.
Under Support at Home, less time is allocated to the care partner role than under the previous program of Home Care Packages. Less time to notice that someone isn't quite themselves today. Less time for a conversation that isn't tied to the next service. Less time to understand what is changing in someone's life.
The risk is that care starts to become a service transaction. The care partner role shifts towards administration and away from the relationship that helps make sense of what is happening in a person's life.
That shift is also changing the job itself. Care partners came into aged care to make a difference in the lives of older people. Increasingly, we are hearing about high turnover and growing dissatisfaction as administration, complexity and confused clients are taking their toll. We are losing the care in care partner.
We are getting better at defining, pricing and purchasing the individual components of Support at Home. But care is not simply the sum of those transactions. Robert describes a care system as one built around dignity, rights, agency and relationships. Relationships aren't an added extra; they are part of the care.
Choice isn't the same as control
Support at Home talks a lot about choice and control. But giving someone choices doesn't necessarily give them control. During our conversation, I raised an observation from Adrian Morgan, General Manager of Flexi Care, who spoke with Invox earlier this year.
Imagine an age pension system where you couldn't work out why you qualified, how your entitlement had been calculated or why someone else received something different. People would quite rightly demand answers. Yet in home care we have built assessment and service systems where people can struggle to understand how decisions about them have been made.
If you don't understand the assessment, how the decision was reached or what your real options are, how much control do you actually have? Robert's response was simple: agency only works if it is informed.
We can give someone a list of providers and call it choice. We can give them a budget and call it control. But if the system is so complicated that they need someone else to explain what they are entitled to and how the rules work, we should be careful about congratulating ourselves on their independence.
Good support should provide enough help to make things possible without taking over the things people can still decide and do for themselves. The test isn't how much Support at Home can do for someone. It is how much it enables them to keep doing for themselves.
When the system becomes the problem
Complexity is more than an administrative problem. Robert has seen what happens when people can't navigate systems. A confusing assessment, another form, another phone call, another person telling you to contact somebody else. Eventually, some people give up.
And the system that was supposed to fit around the person starts requiring the person to fit around the system. Robert put it this way:
“If the system is so complex that nobody can actually navigate it … that also reduces your level of agency.”
That brings us back to the question we started with: who makes the decisions? As people get older, many will need more help. Some will need a great deal of it. But needing help with showering, transport, meals or shopping doesn't mean surrendering control over the rest of your life.
The danger isn't that Support at Home provides too much support. It is that complexity, administration and the way services are organised gradually shift control from the older person to the system.
The real test of Support at Home is not simply how much care it delivers. It is whether, as people need more help, they remain in control of their own lives.
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The full conversation with Robert Fitzgerald, is available in the first episode of WTFH - Where To From Here? - You can watch or listen to the full conversation here.