Who Cares?

Recently, at a restaurant, an aspiring post graduate candidate expressed interest in studying mental health recovery in a third world setting. "Then why not study Queensland," I suggested dryly.

As a Brisbane mother and principal carer of a son with a psychiatric disability and complex needs, I have spent a decade observing a few changes in attitude towards this once taboo subject. It has also been a privilege to work with dedicated women and men to promote and generate a much needed community conversation.

The chief misconception I held was that a first class mental health system existed in Queensland. When my son began exhibiting alarming signs of prodromal schizophrenia, I thought that all I had to do was to mention it quietly; much as women do to request gynaecology services.

How wrong I was! Unfortunately, Queensland still lags well behind the other states in providing models of best practice in the management of housing and support for people living with schizophrenia and allied disorders. And it is women who bear the lion's share of the burden of care when a family is impacted by mental illness.

Robert Kennedy reminded us that as westerners, we are pretty good at costing, so good, in fact, that we know the price of everything and the value of nothing.

Having lost my place in the workforce due to structural inequities and structural inadequacies, I am interested in generating awareness about the measures that are needed to achieve social reforms coupled with those shifts in understanding that are required for some much needed changes to occur. Ironically, despite a much-reduced income, I have moved to editing and mentoring work that I find highly rewarding and satisfying.

In 2004, the Schizophrenia Fellowship commissioned a study into the funding allocation of disability services in Queensland, according to disability affected life years.

It revealed an astoundingly skewed allocation, with families of people living with schizophrenia getting one third of one cent of the disability dollar. Of course this meant that most families missed out altogether. Today, families still struggle to find housing and support that is sustainable for family members with psychiatric disability.

One of the models of oversight that I have investigated in Brisbane provides a community centre where workers from Centrelink and the housing provider are available one morning a week. This ticks the box for bringing the services to residents, not the reverse.

However higher needs clients with tenancy needs, have not been successful in this model. For such clients, smaller groupings with more flexible support hours are needed.

Recent social experiments have demonstrated that seniors who have declined physically and mentally, undergo a dramatic rejuvenation when placed in stimulating surroundings. In mental health jargon, this is known as a therapeutic environment.

The changes that occur via the endocrine system, provide a persuasive argument in the case for congregate housing. In addition, the need for well-informed oversight is crucial for people who have impaired planning and decision-making capabilities.

Anyone who has had no exposure to frontal lobe impairment, might well struggle to grasp how a person who can offer the French equivalent to a crossword clue, would need such support and oversight.

Government forms traditionally screen out people with psychiatric disability when they apply for assistance. Yet, if an intentional community is allowed to form naturally, much of the support is inherent. A variety of interests and talents can make for a therapeutic environment. This, together with measured and highly experienced oversight, is what will determine the success of a congregate housing and support model.

Typically, disability support workers have as their reference point a failed group housing scheme, with inappropriately designed housing and/or an ad hoc mix of residents.

It is satisfying to be able to report that congregate care units for people with high needs, including mental health clients, are now available within at least one Queensland prison. Designs were supplied to Corrective Service Planners, after extensive communication with a talented graduate architect, who lives with mental illness.

Nevertheless, it does seem ironic that something we have advocated for, even more strongly in the mainstream community, is accepted as essential in the prison community. Perhaps the severe health impacts on carers living in their own homes are less obvious and thus much easier to downplay or to conveniently ignore.

Ignoring the housing and support issue of people with psychiatric disability also ignores the reality of lives half-lived. This applies not only for exhausted carers who lose their place in the workforce, but also for their often talented sons and daughters. They are capable of contributing to society in a more flexibly structured working environment. It is a disgrace that their options are so limited that regression to perpetual adolescence is almost inevitable.

One notable exception to the heavily skewed gender based caring burden is the Victorian, Professor Allan Fels. As a public figure and a carer for his daughter who lives with schizophrenia, Allan has captured the attention of the media.

It is the exception that is of interest to us, and the publicity that he has generated has promoted awareness across state borders for the congregate Haven Initiative.

However, given that Victoria is a decade ahead of Queensland in its housing and support initiatives, it may be quite some time before a mainstream community congregate model is established here. Currently, housing stocks are in short supply. Furthermore, the type of housing design that is appropriate for intentional communities is almost nonexistent.

What is needed is a frank and informed discussion not only about the value of intentional communities, but also about particular aspects of housing design that are crucial to a harmonious social environment.

It is my dream that before another decade has passed, there will be a common acceptance of the value of congregate housing, for people whose shared experience binds them in a common goal to achieve a meaningful and satisfying life.

Moreover, principal carers – we mothers, that is, with few exceptions – will be able to focus on providing unconditional loving support to all family members and to live out our later years with dignity and peace of mind, which is presently denied to us.