Essay

The words to say it

THE FUNERAL WAS held in a rural town in New South Wales on the hottest day that year. I nodded at the priest and he nodded at me and then we avoided each other's eyes for the rest of the brief service. A coffin sat in between us unadorned with flowers or symbolic belongings. The silent dry land surrounding the crematorium seemed a fitting backdrop to the event.

There was no eulogy about the great man he was, no generous accounts of the achievements of his forty-six years, no photocopied sheet containing his photo, a prayer and the words of a hymn to be sung. Just thin words that echoed around a room, two sweating professionals waving flies from their faces.

I don't know where he grew up. He was moved to a boarding house when the psychiatric hospital closed down. No historical records accompanied him. I don't know if he had a psychiatric illness, as he couldn't speak, was partially deaf and couldn't be assessed. I know that he had Hepatitis B, as it was written in large red texta on the front of a file with his name on it. He no doubt had a story to tell, but was never taught the words to say it. The boarding house was "for profit", and services from speech pathologists were not provided.

His name was George. I don't know if he had any family. For fifteen years, he lived in this rambling old house with thirty others also discharged from various psychiatric hospitals. They became his people. Sometimes he was "looked after" by other male residents, who occasionally spoke for him. "He needs the toilet," they might say. "He wants his tablets." During these brief relationships, he ran around waving his arms, scratching his legs until they bled, covering his face and hiding in corners. A local GP prescribed Haloperidol to make it easier for him "to be settled". He sometimes spat out the medication and stayed up all night. His end of the bedroom was empty, save for a single bed and mattress; his clothes often went missing. Nobody staffed the place after dark.

I don't know if he liked his tea sweet and white, but that is how it was served to him every morning because that is how it was served to everyone. Large aluminium pots were prepared with no-frills tea bags, powdered milk and sugar. Given the scale of abuse he experienced, it seemed trivial to ask what happened if he wanted his tea black, or in a mug rather than a plastic beaker.

He didn't smoke or drink, he was frightened of dogs, but he seemed to like sitting in the garden, stroking the family of cats who visited. He spent most days waiting at the front gate, his pallid face and distant expression melting into a childlike grin as he rushed to shake hands with the infrequent visitors who came and went. He wore shorts all year round, with his pale distended belly hanging over the top, and grey shoes with zips up the side. His skin was dry and scaly, his hands always cold.

He rarely left the boarding house grounds. Cut off from consumerism, he had neither litter to throw, nor unwanted goods to make landfill. In the pockets of his shorts, he sometimes kept a few smooth round pebbles. His presence was light. Any marks he left treading his small world were fragile, momentary, like footprints in the sand.

George died in hospital just after the boarding house had been closed down when the operator had to shut up shop. Government funding was suddenly made available and residents were moved to smaller community-based houses. He died just after he was given the opportunity to live with paid staff to support him, where perhaps someone would have been able to get to know who he was.

There are many more people buried in George's situation, but no one just like him. Forgotten people, living and dying in a parallel underworld, their voices silenced by neglect, their stories missing from our common history.

Back on that day in the rural west, the coffin creaked its way into the embers, and the priest cleared his throat. We looked at one another, perhaps both aware of a strange fleeting kind of intimacy now hanging in the air between us. The priest had rather kind brown eyes. I said "thank you" for some reason, and I left. I didn't ask what would happen to the ashes. On the drive back, I felt compelled to sing Amazing Grace loudly and out of tune to my car windscreen that was dotted with the blood of dead flies.

 

GEORGE'S LIFE AND death have a bigger picture than the small country town where he and I first met. To look back at the story in a wider context might explain why, forty-six years after his birth, he was buried with only a priest and social worker looking on.

Since the 1980s, there has been at least one report every decade that highlights the failure of government to uphold the basic human rights of people with mental illness. The 2005 Not for Service Experiences of Injustice and Despair in Mental Health Care by the Mental Health Council of Australia and the Human Rights and Equal Opportunity Commission cites New South Wales as one of the worst states in the country for responding to the needs of people with a mental illness. Although this story refers to New South Wales, the patterns are repeated in other states.

The deinstitutionalisation of large psychiatric hospitals from the late 1960s to the 1980s resulted in the discharge of substantial numbers of former patients into "the community". The movement was prompted by a number of factors. Psychotropic medications improved the management of symptoms of mental illness and/or the kind of trauma or pain that is sometimes conveyed in socially unacceptable ways. Although this improvement in treatment often represented a cost to the individual, in terms of side-effects it did also mean that more troubling behaviours were reduced and people no longer needed to be "contained". A philosophical shift promoted the integration of people with mental illness and disability into the community, where it was believed access to more normal lifestyles would be improved.

Unfortunately, the necessary resources did not accompany the movement of people. Even when the process involved the sale of hospital sites on large blocks of waterfront land, funding was not transferred back in any meaningful way to support the people who used to live there. Instead, psychiatric nurses – among other entrepreneurs – bought large buildings in the Blue Mountains, Hunter Valley and Sydney's inner west, then applied for licences and took in busloads of former patients. In short, the care of perhaps the state's most vulnerable people was placed in the hands of those looking for a small business to run.

Of course, standards in boarding houses differ – some provide better care than others – but the motive for all is essentially profit. People affected by mental illness, intellectual disability, brain injury, age-related illness, poverty and all of the above supply this profit by contributing their pensions for board and lodgings. They aren't protected by any of the tenancy rights of other rental situations and many are afraid to make complaints for fear of reprisals. They usually lack family or friends to check on them regularly.

Visit a boarding house in the inner west of Sydney and two things will be immediately conspicuous by their absence. One is light. Houses are characterised by gloomy, damp corridors and windowless rooms. The other is meaningful activity. Residents are often to be found sitting silently in rows of plastic chairs, smoking. They wait for the next cigarette to be handed out, or for the next mealtime to arrive, or they wait for visitors. Mostly, they just wait.

 

IN THE EARLY '90s, the Carr Government launched the Department of Ageing and Disability and awarded it the responsibility for licensing boarding houses under the Youth and Community Services Act 1973. Initially, the new Licensing Branch was a dynamic. forward-thinking team of professionals determined to improve conditions and enhance people's lives. As a result of its early work, many operators could no longer rely on the profits they had been making, licences were revoked, places closed down. The work of the licensing branch, however, soon began to present the government with a dilemma as places closed; residents still needed somewhere to live. In George's situation, the local community took some interest in residents and there was a well-planned relocation into government-funded community houses. In other situations, places were closed down and people were moved to another boarding house owned by a friend of the first owner. In more than one situation, people who had lived together for twenty years were given a few hours' notice and then sent to live at opposite ends of the state.

While the government was tightening up on conditions, the boarding house operators themselves began to get organised and the Residential Carers' Association was formed. Some members sought legal advice and resisted the imposition of conditions by the licensing branch. As one owner commented: "When I got my licence in 1973 they nearly kissed me. I could go away and do as I liked. No one came near me for twenty years. Now they want to set standards."

In 2002, following complaints from community representatives, the NSW Ombudsman investigated the monitoring of boarding houses by the department, which by then had undergone a costly restructure and changed its name to the Department of Ageing Disability and Homecare (DADHC). The Ombudsman's report cites examples of inadequate investigation, documentation and resolution of allegations of neglect, sexual assault, abuse and financial mismanagement. In response, the department refers to 1999 legal opinion that advised it was beyond its power to legally enforce conditions other than the number of residents, the physical and structural requirements of the premises and certain record-keeping responsibilities. This Crown advice was received after seven successful prosecutions under this Act up until 1998.

A second Ombudsman's report released in 2006 raised concerns that the department was "still progressing" the integral issue of legislative review. Seven years after the gaps had been identified by several expensive consultants' reports, the inadequate legislation had still not been addressed because of what the department described as "competing priorities".

The tightly knit centralised licensing team has now long been disbanded. Instead, positions are regionalised and a more conciliatory approach to the monitoring of licences has been adopted. This is partly because the legislation doesn't support more uncompromising approaches and partly because the government does not want to deal with the problem of what to do with residents if sub-standard places close.

The department cannot insist that the criminal records of staff employed in boarding houses are checked. Nor can it ensure that residents are adequately nourished, or have medication dispensed properly. Although in some situations the act of monitoring and reviewing boarding houses has lifted standards, there is no legal weight behind department officers if they insist that an operator does something differently. The limitations of the legislation mean the department charged with responsibility for ensuring their care lacks the legislative power to protect residents. In one establishment, two women paying full board and lodgings with three-quarters of their pensions were also doing the cleaning and laundry for all other residents with no pay. In another, where there was allegedly no continuous staff presence and a front door that didn't lock, three women reported that they had been raped.

In a service model for vulnerable people that relies on "for profit" accommodation, monitoring of conditions and insistence on standards is vital to safeguard their wellbeing. While DADHC attended to its other more competing priorities, the people it can't legally protect have continued to wait and a new issue has begun to emerge.

A mysterious dwindling of the number of people reportedly living in licensed boarding houses has occurred since the early 1990s. In 1993 there were 179 licensed facilities across New South Wales, providing 3,900 beds. Currently there are fifty-five licensed facilities providing nine hundred beds across the state. Even allowing for the relocation of a group of five hundred very high-support needs people in the late 1990s, coupled with referrals to aged care and deaths, nobody officially knows exactly where the other thousand people have gone.

The department recently advised that there is now a closure process in place that incorporates an inter-departmental approach to assisting residents who might need relocation from a boarding house. It advised that "the majority of residents are able to choose their own accommodation in the event of relocation and the Department does not maintain records on their choices".

This policy decision makes it very difficult for long-lost family or friends who might want to regain contact to find a resident. "Choice" of alternative accommodation is often illusory. As the numbers of available beds in licensed facilities have decreased, there has been an increase in the number of operators who simply set up shop without applying for a licence. In the inner west of Sydney, there are an estimated ninety unlicensed boarding houses. Across the state, there are many more. Although a government licence does not guarantee a standard of care, it is almost impossible to monitor the unlicensed sector. In the same square of the city famous for its "baby chinos" and home renovations, there are reports of rooms in unlicensed boarding houses infested with cockroaches and other vermin, as well as unsafe structures – a ceiling fell in on a bed – which come from the nongovernment service providers who walk a fine line between supporting residents and not upsetting owners. It is hard to know how many people with disabilities or mental illness wait out their lives in these places. Since premises are not licensed, officially they do not exist. The residents remain something like patients of the old state asylums, confined to a parallel underworld – unseen, unheard and unknown.

 

SELF-ADVOCACY IS a vital skill when your human rights clearly can't be upheld by legislation. For those who can choose, who perhaps have family support, life in a profit-making facility where conditions are reasonable might be preferable to living alone in a towering Department of Housing block. Most boarding house residents have, however, had years of disempowerment and little family contact. Those who cannot speak for themselves should be covered under the various treaties and international declaration of principles that Australia has been involved in developing, such as the Principles for the Protection of Persons with Mental Illness and for the improvement of Mental Health Care (United Nations General Assembly, 1991) for example. However, it is one thing to subscribe to human rights treaties, and quite another to implement them.

Sister Myree Harris of the Gethsemane Community has been an advocate on behalf of people living in boarding houses who cannot negotiate the system for themselves for over a decade. As part of the Coalition for Appropriate Supported Accommodation for People with Disabilities, she lobbies government departments and acts as a watchdog of the industry. She writes a lot of letters. Recently, she sent off another round to try to figure out why the 2006 year's funding for allied health was not transferred from DADHC to local health services. The lack of money meant that some boarding house residents who had been funded to receive essential podiatry services "to enable one woman to stand up" or dental care had to pay for it. One man had all his teeth removed and then had to wait twelve months for dentures. When he was finally eligible, his gums had shrunk and he could no longer wear them. Sister Myree painstakingly documents the human costs of bureaucratic slip-ups in her letters to various ministers and departmental heads. She tries to effect change, and freely admits to the frustrations inherent in her work. "It's the absolute poverty that gets you down," she says.

For the past two years, she has received a grant from the Paul Newman Charitable Trust. She uses the money to buy shoes for those who might otherwise manage through all seasons in a worn out pair of rubber thongs.

"Someone will go out with a volunteer, might have a coffee and buy a pair of shoes – have the sort of day at least once a year the rest of us take totally for granted," she said.

It's not enough money for all residents who might need shoes, but it is enough to help some. It's tempting to wonder where priorities might lie if our politicians and business leaders were to walk a mile in the old shoes of a boarding house resident.

It is easy to demonise the proprietors of licensed boarding houses for wanting to make money by cutting costs when providing care. However, some are people of goodwill who represent both the market's response to a shortage of low-cost affordable housing and the state's opting out of the responsibility for its most vulnerable. There is a lack of affordable housing in major cities across Australia – the kind of accommodation that can be secured by someone without rental references and a credit card to put the bond on.

In the sector generally, and certainly within DADHC, there has been a gradual tacit acceptance of conditions that the community and licensing teams once lobbied to change. Long-time workers in the field now find themselves saying that "some places aren't too bad" and others are "good enough". The yardstick "good enough" has plummeted since the deinstitutionalisation promises of community living. What we mean by "good enough" seems to progressively drop, year after year, as house prices rise.

Sister Myree fears that a crisis – a large-scale disaster – is what is needed before anyone will take this matter seriously.

"What kind of crisis?" I wonder out loud. "A resident being killed?"

"Nobody will care about that!" she snorts.

 

MARTIN PLACE IS in Sydney's CBD. During weekdays at lunchtime, men and women in suits form impatient pin-striped traffic jams in a food hall that boasts cuisine from across the globe. One night I walked through this enclave where the banks and office towers rub shoulders like marble giants. An unusual stillness surrounded the place. Underneath security lights, a couple of men in a lone white van handed out plates of steaming food to a crooked queue of more than two dozen people. A young woman in a filthy tracksuit ate hers propped against a Harvey Norman store sign. Above her head, desktop devices to display digital photographs were advertised. From out of the shadows, a wild-haired man shuffled forward conducting a florid argument with an unseen entity, his feet pink with cold and black with city grime.

It's not really a mystery where the missing boarding house residents might have ended up, on a journey from state hospitals to licensed boarding house, and from unlicensed boarding house to the street. They're not even missing, really, but hidden. To be missing, someone has to officially notice that you're gone.

If we accept that the market can take care of impoverished people who have no choice, or that funding to mental health services in Australia at half the rate per capita than in the United Kingdom, the United States and New Zealand is satisfactory, are we not also supporting a view that people with mental illness, complex needs or disability do not deserve the lifestyles and conditions enjoyed by the rest? As many of us work long hours and struggle with our mortgages, other people's neediness seems to become another demand we don't want to think about. Meanwhile, we allow our elected representatives – who three decades ago had responsibility to support people with complex needs – concern themselves with more pressing vote-catching issues.

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