Adequate Housing for People with a Serious Mental Illness: Policy Obstacles and Practice Solutions

HOUSING AS A HUMAN RIGHT

Satisfying the housing needs of people with a serious mental illness is a major social issue in terms of health, wellbeing and human rights. The 1993 Burdekin Inquiry stated: ‘One of the biggest obstacles in the lives of people with a mental illness is the absence of adequate, affordable and secure accommodation’ [1; p. 337]; and ‘The shortage – and in many cases total absence – of appropriate accommodation for people with a mental illness was one of the most common complaints made to the Inquiry. Many saw it as the biggest obstacle to mentally ill people's treatment and quality of life’ [1; p. 338].

The Inquiry found it alarming that, although most people with a severe mental illness were poor enough to qualify for public housing, the proportion living in State Government Housing was very low. In the United States federal funding for low-income housing was cut by 80% between 1981 and 1988. Similar cuts are being made in public housing funds in Australia. (Carling 1993, p. 345). ‘The failure of the Commonwealth and States Governments to agree on their respective financial arrangements has been a major factor inhibiting the expansion of public housing in Australia.’ [2; p. 27].

Chief Justice Marcus Einfeld [3] commented that little had changed since the Burdekin report and that the Australian Government was failing in its obligations to people with a serious mental illness by not providing them with a basic human right, a home of their own. He added that this was not a matter of choice for government, but a matter of fulfilling basic obligations to citizens in accordance with international norms and treaties.

THE CONCEPT OF ‘ADEQUATE’ HOUSING

‘In 1975 the Commonwealth ratified the International Covenant on Economic, Social and Cultural Rights which imposes on the Australian State inter alia an obligation to recognise, respect and protect a right to “adequate housing”. Adequate housing means more than shelter. It implies that even the least vulnerable of adults, have a right to housing which is secure, hygienic affordable and of a standard consistent with human dignity’ [4; p. 223–225]. It should be noted that there is no Federally funded housing program for people with a mental illness. The Supported Accommodation Program for people with a disability still excludes people with mental illness.

Concern has been expressed about the progressive reduction in inpatient beds for people with mental illness and questions raised about whether too little money is spent on community care.

PSYCHIATRIC PATIENTS ARE MORE OFTEN HOMELESS

In Australia people with serious mental illness are often both socially isolated and homeless, living a transient lifestyle, thereby becoming targets of assault and murder. As Kavanagh stated, ‘for people who are homeless, the inverse care law applies: those in most need receive least health and social care’ [5; p. 209].

In a review article on homelessness, Susser et al. [6] stated ‘that homelessness represents only “the tip of the iceberg” of residential dislocation’ (p. 546) and afflicts disproportionately people with disabling mental illness such as schizophrenia. Susser et al. [6] found that serious mental illness was a major risk factor for homelessness and that, among the homeless, the lifetime prevalence of schizophrenia and bipolar disorders is five times the rate in the general population.

Similar results have been found in Australia where over half of a group of 346 homeless people in Melbourne were diagnosed with a current severe mental disorder and over 70% received a diagnosis of lifetime severe mental disorder [7]. There is a high risk of suicide amongst the homeless in Australia – about six times the level in the general population. These estimates were based on a case review of 741 adults conducted in the first six months of 1997 [8].

In Australia in 1997, there were 78 833 persons or 15.8% of all those on a Disability Pension, who had a psychiatric illness. Of those who have a serious mental illness, there is a large proportion who are homeless or whose accommodation does not fulfil the criteria for ‘adequate housing’ [4]. Most people with severe mental illness are reliant on accommodation from family or friends, hostels, some of which are specifically catering for people with a mental illness, boarding houses and, for those who can afford it, the private rental market. In reality, there is little choice for people with a severe mental illness. ‘The accommodation available is often expensive, substandard or inappropriate. Crowded, dilapidated boarding houses have become the “new institutions”’ [1].

Although deinstitutionalisation has meant that most people with a serious mental illness have been treated in community settings for the last 30 years, institutions have in fact followed psychiatric patients into the community. There has been an inadequate separation of ‘having a home’ from treatment and social support. Lack of choice due to financial limitations has meant that many psychiatric patients live in a total care or alternatively in a no-care situation.

SUPPORT NEEDS INCREASE IN ‘INSTITUTIONAL’ SETTINGS

Based on recent prevalence data from the United Kingdom [9] concerning people with a psychotic disorder living in the community, about two-thirds had difficulty with one or more tasks of daily living. The major areas where people with a psychiatric disability required support were dealing with paperwork, writing letters, sending cards and filling in forms, practical activities like gardening, decorating and doing household repairs, household activities such as preparing meals, shopping, laundry and housework and managing money including budgeting and paying bills. Having a physical illness was shown to be significantly associated with reporting four or more difficulties with tasks of daily living.

Those in supported accommodation were more likely to have difficulties with daily living tasks such as dealing with paperwork than those in private households. Those in supported accommodation had a smaller social network [9]. Whether this reflects a prior higher degree of disability or the increased dependency of an ‘institutional’ setting is open to question.

CONSUMER PREFERENCE: SEPARATION OF TREATMENT FROM A HOME WITH SUPPORTS

Several surveys and consultancies have collected information recently from consumers about what they want. The overwhelming conclusion is that consumers want a home of their own, but with adequate supports [10]. A recent study from Sydney concluded that consumers wanted an environment that ‘ensured living alone in settings of low behavioural demand’ [11; p. 628].

The literature describing consumers' housing preferences [12] cites independent, integrated housing living with either friends, partners or alone as the most desired housing arrangements. Consumers prefer not to live with other people with psychiatric disability and to prefer support that is available on a 24 hour basis but not live-in. Also privacy and freedom are very important components according to consumer surveys. Consumers also want opportunities to contribute to the maintenance and upkeep of their home. In addition they want to feel part of their neighbourhood and to be integrated with the community. People with psychiatric disability have the same housing expectations as the rest of the community. The opportunity to choose their own accommodation from a wide array of possibilities and live independently in adequate supported housing is a prerequisite for achieving stability, security and improved mental health.

THE POLICY: PRACTICE CONTEXT

The National Mental Health Policy and Plan sets the framework for the provision of services for people with a serious mental illness. It sets clear directions for the future incorporating a change from an institutional to a community-oriented approach. A key feature of the new National Mental Health Strategy will be a broadening of focus to include social factors [13]. One outcome of the shift in the mental health policy is that providing support for those with mental illness living in independent accommodation is going to play an increasing role in health care. The question is how this can be implemented when one department is responsible for providing support under the Home and Community Care scheme and other departments are responsible for housing and disability policy.

There are several national avenues through which accommodation and support is administered and funded: accommodation through the Commonwealth – State Housing Agreements and support through the Disability Agreement and Home and Community Care Program. Through these funding agreements, the States have assumed formal responsibility for how accommodation and support for people with psychiatric disability can be designed and managed.

Despite the increasing numbers of people requiring assistance and the formal recognition of psychiatric disability by the Disability Services Act 1986 the availability of or access to disability services has not matched the intention of the legislation. Historically these services have had a low base of funding. Resource allocations have not followed policy development, especially for those with disability resulting from a mental illness. Similarly, the Housing Agreements have been limited by lack of agreement between Commonwealth and State governments on key issues such as rental rebates, definition of appropriate housing, capital finance and how the states can increase their long-term housing stock, and other financial matters concerning taxation and housing subsidies [2].

The Commonwealth Human Rights and Equal Opportunity Commission ‘has jurisdiction over matters pertaining to the right to adequate housing of the disabled, the mentally ill and children although this does not represent the universal protection of the right’ [4; p. 229]. However, this role of the Commission remains untested with respect to housing and support for the mentally ill.

LITTLE COORDINATION BETWEEN HOUSING AND SUPPORT SERVICES

Despite the fact that disability legislation gives people with a psychiatric disability priority, in practice there is little cooperation between mental health community teams and Departments of Housing. Evidence from a project in Sydney suggested that people with a psychiatric disability have in fact not been provided priority access. ‘People with psychiatric disabilities often have less personal resources in terms of financial and social support than the general population, and also are hampered by their disability which makes negotiating the private market or accessing priority housing extremely difficult’ [14; p. 36].

Implementing the coordination of housing supply and community support is, in practice, extremely difficult. Demonstration projects have been set up to try to deal with these difficulties. These projects have commonly established a joint strategy between the State Government Departments of Health and Housing and community organisations enlisted to provide support for daily living [14,15]. Other projects have developed models of supported accommodation that can provide useful experience. Landmark, Karakan, and Richmond Fellowship, Queensland, all run programs that coordinate the acquisition of housing and provision of support services. Support workers teach budgeting, living skills and so on.

CONSUMER AND STAKEHOLDERS’ VIEWPOINTS

Interviews were conducted by social work students with a range of stakeholders representing hostels, shelters, day activity centres, voluntary organisations, advocacy organisations, government departments and 46 consumers in the Brisbane inner city area during August–October 1997. Consumers discharged from an inner city hospital were contacted by their social workers who had placed them in accommodation to find out what had happened to them as part of a quality assurance evaluation, 3–6 months later. A total of 81 consumers were contacted. Thirty-six responses were received from consumers or their carers.

Consumers value choice of accommodation. They view the presence of social support and activities as important. Some consumers have moved from one type of accommodation to another to fulfil their need for more support or greater freedom. For many, choice was limited by affordability, as the social security pension is their only income. Some found a hostel a viable option because everything was provided, food, electricity and gas, without the person having to worry further about paying these bills, which is the case if they choose to rent a unit. Public housing, which is available at cheaper rents, is not a common choice unless there are friends or relatives willing to help the person obtain this form of housing and support the consumer in tasks such as paying the rent and other bills. Renting a unit or house is outside the price range of consumers with a serious mental illness unless they are sharing accommodation. To do this successfully would probably require some planning and inbuilt support such as that being offered by the Landmark Project and the Richmond Fellowship Independent Living Service.

Those consumers living with their parents at home are often only doing so because of financial need. The hospital discharge data show that younger people are frequently discharged to their parents' home, only to move on as quickly as possible without trace or follow-up. This is in keeping with high mobility rates for this age group in the general population [16], but makes it difficult to achieve stability in a secure social environment. Interviews showed that the relationship between parents and the younger consumer were often strained, as neither party was really happy with the arrangement. Some parents were able to establish their offspring in a unit and support them more satisfactorily from a distance.

Results from the hospital follow-up indicated that the needs of the younger age group with serious mental illness are quite different to those of the older age group. The younger people between late teens and age 30 years, like their age group generally, want to be more mobile and flexible in terms of choosing accommodation. They are keen to share accommodation with their peers. The social workers reported that despite considerable efforts to place people in what they thought was reasonable accommodation, they had already moved on and could not be traced at follow-up.

Where families are able to support their ill family member and provide regular support, the outcome could be satisfactory for all. Otherwise, there were few supports available from either clinical or welfare agencies for consumers to be successfully established in independent accommodation.

The result of these multiple constraints, such as lack of financial resources, lack of support with daily tasks, particularly tasks such as paying bills, and lack of regular social support, are that many consumers find group accommodation in hostels or boarding houses the only viable option.

The major reason for people not staying on in public housing or private rental was the lack of support for daily living tasks and for providing assistance at critical times of their illness. Relapse of their condition necessitating an emergency admission could mean loss of that accommodation because there was nobody there to pay the rent on the consumer's behalf. Departments did not communicate with each other or even between sectors of the one department. People thus became easily lost in the system and lost their entitlements in the process. There is a real lack of coordination and advocacy with respect to consumer's financial and accommodation rights, which the Public Trustee provides for their clients, but only if they are deemed to be incapable of managing their affairs under the terms of the legislation.

A COORDINATING BODY: A ROLE FOR THE SECOND MENTAL HEALTH STRATEGY?

Our review of the literature, and our interviews with community stakeholders and consumers, raise issues of lack of affordable housing with appropriate support services for people with a serious mental illness. There is lack of coordination in the provision of housing for people with a serious mental illness at all levels, between major government sectors, within government departments themselves, in the private housing and voluntary sectors.

There is clearly a need for a coordinating body capable of driving forward the provision of affordable housing with appropriate community supports for people with serious mental illness. Such an organisation would need to have input from consumers and carers as well as voluntary organisations, dedicated government representatives and members of the broader community.

Such a coordinating body is needed to coordinate the supply of adequate housing whether in the public or private rental market or hostel/boarding house facilities with appropriate support services for the consumer needing housing. Other functions of such a body might be to:

There is a need to negotiate better coordination between housing, social support and clinical support services, so that partnership principles can be enacted nationally. At present, the agenda for mental health is set by the National Mental Health Policy while responsibility for housing lies with the Commonwealth–State Housing Agreements and for disability supports with similar Commonwealth–State Disability Agreements. The lack of agreement between Commonwealth and State governments on key housing issues has limited the growth of public housing in Australia, which affects all those on reduced income [2].

The provision of individual care packages for people with serious mental illness living at home, under the Home and Community Care Scheme, is a viable solution to funding and implementing home support across the nation. The HACC Scheme needs to be more tailored towards the needs of the severely mentally ill. Support workers and voluntary organisations need better education in providing this type of care.

An issue which touches the conditions of people with serious mental illness is that of rental subsidy and one where the States and Commonwealth have been unable to find agreement. The mental health sector needs to negotiate with the Commonwealth Department of Housing for suitable rental rebates for people with psychiatric disability, while awaiting public housing, in accordance with their priority rights under Disability legislation.