Community and residential service are complements to each other, not alternatives.
What happens when it’s no longer possible to keep someone you love, someone who needs care due to their frail old age, at home? Do we betray those we have promised to support at home if we need to turn to residential care?
These are some of the issues I’ve been wrestling with over the summer. This time it’s not another academic study, nor another piece of objective research. It is the reality facing my own mother and father. And unlike in my research, where I have to take responsibility for every bit of data and analysis, I’ve also found that I’m not the only one making the decision; the responsibility belongs to the full family council. With three generations spread out over Eastern Australia, sometimes sitting around the table linked to others by phone and email, it has not been simple wrestling with the recognition of my parents’ increased needs for support, our capabilities and the possible options.
In the 1970s, there was little community care available in Australia, but gradually this has changed, so that Australia now has one of the better, most fair and most financially sustainable systems of aged care in the world. My own research into aged care began at that time, with a two year in-depth study of a Dutch nursing home and the welfare state system in that country, but I later began to focus on community care, or better said, care at home.
When the Home and Community Care (HACC) program was first introduced in 1985, community care was explicitly proposed as an alternative to residential care. And for many of those admitted to nursing homes or hostels at the time, services that provided support at home indeed proved to be an alternative. From the 1960s onwards, almost all public expenditure on aged care had been for nursing homes or hostels. Consequently, they contained many residents who weren’t thought to require such a high level of care. The provision of HACC services and the introduction of aged-care assessment teams (ACATs) in the late 1980s finally served to give many people an alternative.
Now, almost 30 years on, the HACC program has grown significantly. Alongside this we also have care packages, or consumer directed care (CDC) as it’s to be known into the future. But despite the growth in these programs and the existence of additional private in-home services, there are still limitations on community care.
First, the work of unpaid family carers remains essential when care needs are high. Although many of these carers are superheroes in what they manage, there are limits on what they can do, especially if they are also employed or if they, too, are frail and need help. Second, there are still significant problems with accessing extra skilled help at home. There are long waiting lists for high-level care packages and problems with the availability of care staff, especially if there is not to be a procession of different anonymous care workers through the home every day.
This was the situation that we faced in the lead up to Christmas. My mother, now aged well over 90, suddenly needed ongoing care that we were not able to provide at home. There was also a 12-month wait or longer, we were told, for a more intensive care package at home. But even with private extra care services there would be many more hours each day she needed help. What good fortune, we thought, when after a period in hospital and a few weeks in rehabilitation, she was placed in a friendly, caring nursing home on respite, a few blocks from her home.
But what about my father, her husband and, unbelievably, still her lover after 60 years? Both remain very much in love, but despite him suffering dementia he was not assessed as needing the same high level, or residential, care as her. Visiting was nice – we could bring her home for a few hours or bring him to visit her in the facility – but could they ever live together again?
Most residential care facilities we inquired at told us about the person centred care they offered but would not allow my parents to share a bedroom. My mother’s would. And after a wait of a few weeks, the vacancy came up and the room shuffle was finally organised. Back together, both parents are doing well, enjoying activities such as the geri gym, the music and craft programs and the recreational outings, as well as our visits and the excursions we take them on.
The experience has reinforced what research has taught me over the past 30 years. A priority for aged-care policy in the next five years must be increasing the availability of support services to keep people at home. We still urgently need an expansion of high-level support services, as well as increased aid for those who cut in at an early stage, to provide preventative and restorative forms of help at home.
It is also time to recognise that community care is not an alternative to residential. The two types of assistance are complementary. I’m convinced the care at home over the past few years kept my parents out of a residential centre, preventing their premature admission and sustaining their sense of independence and control in their own place. But we need good quality, affordable and accessible residential care, as well.
Michael Fine is an adjunct professor in the department of sociology at Macquarie University.Do you have an idea for a story?
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