Trapped in the System


A man aged thirty-six recently began his ninth footy season resident in an old people’s nursing home. Each week his friends and family visit him, talking to him, laughing with him, joining him in the silences of his Fitzroy twilight zone. Since he suffered the catastrophe of a brain injury in 1996 some have drifted away. Others are drawn back by the irresistible force of his character which is still there despite his injuries.

In those darkest days nine years ago, his mother whispered to him that she would understand if he let go, if he followed her only other child to whatever lies beyond. But he did not let go and instead drove off the illness which stole his body from him, saw off the ventilators which inflated his collapsed lungs, overcame the gruelling regimen of the dialysis machine. He graduated to life in a nursing home. To a life where thirteen fellow residents died in his first small room as he lay there, listening to the rattles of their final breaths. To a life of surgery which slices his contracted tendons to free his contorted limbs. To a life of silence filled with infinite boredom and broken by the patronising voices of those who forget that he is blind, not deaf.

Chris Nolan and Jeremy Smith at the nursing home

Chris Nolan and Jeremy Smith at the nursing home

Were he able to speak to his visitors he might complain about his being trapped in a body which does not work, but those who know the man say he would not. This despite eight long years parked in purgatory struggling to lift an index finger, while his friends travelled the world, lost or discovered love, found new horizons, started families while he has for company only the frail, the elderly and the demented.

Recently he was told that his nursing home will soon close. While they could find a place for him in another, his family and friends have decided that to do so would be to accept the absurdity of these last nine years. Instead this group has decided that it is time to get him out; however, getting him out is not easy. His place in the nursing home is funded federally, meaning that the Commonwealth pays for his bed. The State of Victoria provides some additional funding for treatment but maintaining this contribution is a constant battle. Last year the physiotherapy component was reduced to eight hours per year to keep those once powerful limbs from becoming mallee roots (after an exhausting appeal it was increased to twenty-four hours per annum). The group of family and friends has come up with a notional ‘right place’ for him to live. It is nothing extraordinary, simply a small purpose-built house where he and others can live a dignified life with the support they need, but at the moment that small house floats above the horizon like a shimmering apparition.

In recent months the group has met with no fewer than six federal and state ministers. Ms Pike, the Victorian Minister for Health, was sympathetic but explained that this is a federal problem. Ms Bishop, the federal Minister for Aged Care, was sympathetic but explained that this is a state problem. Just drive your bus down that cul de sac, as one friend put it. Neither minister is entirely to blame, but neither position is conscionable.

The Victorian government says that it cannot take on the cost of alternative accommodation for this man despite its unquestionable obligations towards the disabled. The Commonwealth says that it will continue to pay almost $65 000 per year to provide a bed in an old people’s home but will provide nothing if he is moved to somewhere better – it will pay to keep him in the wrong place but will not pay to keep him in the right place. And while each government relies on irrelevant constitutional demarcations to deny responsibility, each covets jurisdictions of the other which might generate revenue or votes: ports, industrial relations. There are no easy dollars or votes to be had in the torturous world of the profoundly disabled.

It seems inconceivable that in this time of record surpluses such a deadlock can remain, but it does and it is demonstrably clear that senior ministers cannot fix it. That power resides with the premiers and the Prime Minister. They met on 3 June for the Council of Australian Governments, the donnybrook formerly known as the premiers’ conference. This issue was on the agenda and the young man’s family and friends wondered whether this congress had the compassion, the imagination, the common sense to fix it. They waited for an announcement, some with naive optimism, others with resigned cynicism. And then it came, a ‘communiqué‘, the very term conjuring images of agreement between powerful leaders. And what was the bounty of this communiqué, after so many years of obfuscation and intellectual dishonesty? A committee will be formed to draft a report!

If that is the best that our leaders can do they should at least have the grace to drop in to the nursing home in Fitzroy and explain why.

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