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World Mental Health Day Address

Chris Sidoti
Human Rights Commissioner and Acting Disability Discrimination Commissioner

Australian Psychiatric Disability Coalition National Forum
Canberra, October 10 1998

 Chris Sidoti

Introduction

Thank you for the opportunity to speak here today, World Mental Health Day. I am very pleased that World Mental Health Day this year is dedicated to the theme Human Rights and Mental Health. This theme recognises that mental health issues are human rights issues - a view argued strongly and consistently by our Human Rights Commission for many years.

This view is not simply our opinion. It is based on the attention given by international human rights law to issues related to human rights and mental illness. All general human rights treaties apply to people with mental illness. The International Covenant on Civil and Political Rights protects them against arbitrary detention and cruel and inhuman treatment. The International Covenant on Economic, Social and Cultural Rights assures them of their rights to medical care and attention, to income security when required and to a decent standard of living. There are also other human rights instruments that provide more particularly for the rights of people with mental illness: the Declaration on the Rights of Disabled Persons, the Standard Minimum Rules on the Equalisation of Opportunities for People with Disabilities and the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care. They emphasise the right of people with mental illness to participate in social and economic life as fully as possible.

In inviting me to speak, the Executive Director of the Australian Psychiatric Disability Coalition, Paul Cain, suggested that this would be an opportunity to discuss implementation of the Commission's National Inquiry into Human Rights of People with Mental Illness, five years on, as well as contributing thoughts on directions forthe second National Mental Health Strategy. I will be saying something relevant, I hope, in each of those areas.

The report on human rights and mental illness

The Commission's two volume report on the human rights of people with mental illness was completed before I commenced my term as Human Rights Commissioner.

With that degree of detachment I can express my view that the Commission made a very substantial contribution in this area through its National Inquiry. I consider that that is now virtually universally accepted. The major purposes of the National Inquiry report - apart from shocking public and political consciences into action - were to put before policy makers and service deliverers and into the hands of advocates and consumers clear statements of the application of human rights law to the provision of services to people with mental illness and the simple facts of human rights violation.

For that reason, the inquiry made major recommendations on accountability and participation and on action to improve service direction, funding, availability and delivery.

In my view some of the most significant and lasting effects of the Commission's inquiry are to be found in its contribution to the development of a national mental health strategy that includes a degree of open evaluation and accountability of policy making and service delivery. It was never going to be possible for the Commission to perform this sort of role on a continuing basis or to maintain a standing national inquiry in this area of the scale of its initial national inquiry. It became absolutely impossible when the Commission's budget was cut by 40%. Although we did dedicate considerable time and effort to following up the inquiry rather than stopping all effort with the release of the inquiry report, clearly there had to be a handing over of responsibility to mainstream government and non-government processes.

That is one reason why I cannot claim to be in a position to conduct a comprehensive evaluation of the implementation of recommendations of its National Inquiry. However, there are some areas in which the achievement has been obvious and great.

The inquiry changed perceptions of mental illness. While the medical and welfare needs of people with mental illness were recognised, the inquiry based its analysis not on a medical or welfare model but on Australia's human rights commitments. It brought to attention violations of the human rights of those affected, violations of commission in the mistreatment they often suffered and violations of omission in the denial of the resources and services required to ensure the observance of rights. Its views and recommendations on these important principles have been adopted by governments and generally within the community.

The human rights approach is reflected in the National Mental Health Strategy. The Strategy is a welcome and overdue acknowledgement of the Commonwealth's role in mental health. Although it was under negotiation and was adopted before the inquiry reported, it reflects the impact the inquiry had on perceptions and policies and indeed on the Commonwealth's acceptance of its share of responsibility in this area. In many respects it pre-empted the inquiry's findings and recommendations.

The same changes in approach have been reflected in important changes in law. Every state and territory has amended or is amending its mental health legislation to move away from an emphasis on detention to a model based more properly on human rights. The model national legislation reflects those principles. It has been the basis for the amendments already enacted. There remains need for a good deal further legislative reform but the process is well underway.

Accompanying the changed approach has been a very significant increase in resources. First and foremost this increase is seen at the federal level where the Commonwealth, under the National Mental Health Strategy, allocated funds for the first time specifically for mental health services. The states and territories increased their funding too, although it must be said that the level of funding remains well short of that necessary and appropriate to meet the needs of those with mental illness.

Employment

Some of the National Inquiry's most important recommendations concerned employment. This reflected the fact that, unless people with mental illness can seek and obtain employment without discrimination, their right to participate as fully as possible in the broader community will be violated. The National Inquiry recommended that all equal employment opportunity planning and policy should address mental illness issues. It is difficult to ascertain whether or how well this has happened, especially as federal affirmative action legislation and reporting requirements continue to relate only to the employment of women.

The importance of employment was recognised too under the National Strategy which included programs to improve community acceptance of people with mental illness and to promote employment opportunities for them. I cannot help thinking, however, that there has to be a more substantial role for government in this area than in the past. Promotional posters on EEO and people with a mental illness are important but not enough.

I am considering at present provisions to ensure a greater linkage between EEO policies and procedures and the DDA. These could be particularly important for more effective realisation of equality of opportunity for people who have or have had a mental illness. One idea to discuss in this area is the use of the exemption provisions in the DDA to give teeth to government and private sector EEO policies and procedures. We could grant an employer a temporary exemption from the DDA on condition that it applies appropriate policies and procedures. We could also consider what improvements would be needed to any existing EEO policies and procedures before we grant an application for an exemption. Perhaps a systematic employer by employer approach along those lines has more prospects for moving things forward, in the short term at least, than case by case complaint handling or the attempt to achieve standards across the board.

The distance still to go

While acknowledging the achievements of the Commission's National Inquiry and of the National Mental Health Strategy I must also acknowledge that there is a great distance still to travel before we can be satisfied that we are responding adequately to the human rights needs of people who have or have had mental illness. The comments I have made about employment indicate that in only one area. There are many other areas that require attention - research and analysis, policy development and legal and program reform. The Commission has a continuing role to play in this but a greatly reduced capacity to play that role.

Last year, after the Government announced budget cuts to the Commission totalling around 40%, I reluctantly announced here in Canberra that we would be unable to undertake any further work on human rights issues relating to mental illness. I felt that, in view of the enormous amount of work we had done on these issues in the past few years, we had to allocate priority in the use of our remaining resources to issues that had received less attention. I am pleased to say today that we have been able to continue our work here in a couple of areas, not because we had the resources to do so but because we were fortunate to have the voluntary assistance of Noah Costelloe for four months as part of his social work studies at the University of Sydney. Some people present today would have met or spoken with Mr Costelloe in the course of the consultations he conducted. I want to record here my thanks to him for his capable and enthusiastic work.

As a result of Mr Costelloe's assistance earlier this year I was able to announce that the Commission planned to review progress of relevant aspects of the National Mental Health Strategy by reference to Australia's human rights commitments and the recommendations made by the Commission's National Inquiry. This has not been an "inquiry" intended to lead to a formal report and should not be seen as competing with the evaluation of the Strategy conducted by Health Ministers. The first stage has been a round of consultations intended to inform the Commission of current perspectives of key stakeholders, including government, consumers, carers, service providers and research bodies, and identify possible avenues for effective involvement by the Commission.

Following those consultations discussion papers have been prepared on two priority areas that emerged - "living wills" and community treatment orders. I would like to discuss each for a short time.

Living wills

Our consultations suggested that there is widespread interest in and support for the application of advance directives, or "living wills", to the area of mental health. The Commission's discussion paper is intended

A living will is a voluntary statement outlining the types and conditions of medical care that a person would prefer in a given situation prior to requiring care. A person may also nominate one or a number of substitute decision-makers (Power of Attorney) to make decisions on his or her own behalf. A living will sets out in advance a consumer's wishes in relation to treatment decisions.

Living wills identify

A living will may cover financial, personal and medical decisions concurrently.

A number of publications and consultations with consumers, carers and advocates suggest that decision-making and informed consent in the area of mental health are issues of considerable concern. The recognition of participation and consultation is a cornerstone of the National Mental Health Strategy and is recognised by most legislative frameworks and policy statements. However, participation in decision-making and the exercise of informed consent appear to be restricted in practice for a number of reasons.

Precisely because of mental illness, a person may be or may be perceived to be unable to make decisions in his or her own best interests. Instead of an individual being able to make decisions prior to becoming unwell or having a substitute rights carrier available to make decisions on his or her behalf, the approach has generally been to transfer responsibility for decision-making to a health professional, court or tribunal.

Incapacity may well unavoidably restrict the opportunities for people with a mental illness to participate in decision making and therefore consent to treatment. But it has not always been sufficiently recognised that they may experience incapacity in one area or at one time but capacity in another area or at another time. An assumption of universal incapacity in all spheres restricts the capacities of and opportunities for people to participate in decision-making.

The United Nations Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care recognise exceptional circumstances where the right to informed consent can be waived on the grounds that a person may be of imminent or immediate risk to self or others or where treatment and detention are in the best interests of the person (Principle 11.1). Most Mental Health Acts stipulate these two grounds as the basis for involuntary treatment and detention. It appears therefore that the right to informed consent and involvement in decision-making may often be effectively bypassed or ignored.

Comments to the Commission indicate that individual treatment plans are often developed without involving the person with a mental illness and other interested parties. A living will might provide a means for outlining a preferred plan which identifies medication, side-effects of current and past medications, primary health concerns and other special needs such as diet, allergies or religious concerns. A living will might also outline a preferred action plan that identifies non-medical forms of care, expected periods of illness, illness patterns, intervention strategies and preferences for mental health staff that take into account gender, profession or particular individuals. Concerns such as contacting employers or maintaining housing might also be included and accounted for. These issues may apply whether treatment is to occur in an institutional or a community setting.

Our consultations indicate that a living will may help a consumer to control his or her care options and that, even if a living will is not accorded fully legally binding status, it may usefully influence and inform treatment decisions and disputes between interested parties.

The Commission's discussion paper raises questions about

This paper will be released in the next month and comments will be invited.

Community treatment orders

The "living wills" paper raises important issues but I recognise that this is a fairly specific law reform proposal rather than a paper which canvasses the breadth of issues dealt with in the Commission's report on human rights and mental illness or in the National Mental Health Strategy. We will also be releasing another discussion paper, this time dealing with a broader range of service and treatment issues.

During the Commission's recent consultations a number of serious concerns were constantly raised regarding community treatment orders. We were told that community treatment orders are in effect drug treatment orders that do not meet the objectives of community treatment, as outlined in the National Standards for Mental Health Services (Standard 11.4.A). Views expressed to the Commission suggest that the right of people with mental illness to live, work and participate in the community to the full extent of their capabilities without discrimination (as recognised by the Mental Health Statement of Rights and Responsibilities) is being compromised by a lack of available community based services and care options.

It has not been possible to include all stakeholders in this area in the consultation process leading to this paper or to ensure, therefore, that all views and knowledge are reflected. That is why we are releasing the paper for discussion. I regard the issues that have been raised in it as significant and warranting further consideration.

It has been suggested to the Commission that

The Commission has heard criticism that community treatment orders are an excuse for minimal care, on the basis that people with mental illness living in the community do not have access to a range of services equivalent to those in mental health facilities or to the range of services advocated in the National Mental Health Strategy.

Consultations suggest that the term 'community' is still often used as a motherhood statement in mental health and that there needs to be clear distinctions between evaluative and descriptive usage of the term.

The majority of those consulted expressed the view that community based services are often non-existent or fragmented or unevenly distributed.

It was suggested to the Commission that an audit of community based services is necessary to establish a complete picture of service types, regulatory structures, standards mechanisms and service distribution as people with mental illness are living in the community without adequate care and support services.

Views expressed to the Commission suggest that we need to have impact statements in areas of change to ensure that there are adequate or equivalent service provisions in the community.

The Commission's National Inquiry recommended that "mental health services should not attempt to care for people in the community until it can be demonstrated that appropriate accommodation and sufficient numbers of trained community mental health staff are available to provide adequate care and support". This recommendation, consultations suggest, still needs attention, given the lack of adequate community care and support services.

Views were expressed in consultations that without a broad committed community based sector to support the objectives of community treatment the costs of mental health care are transferred to people with mental illness and carers.

As with the living wills paper, the discussion paper on community treatment orders should be publicly available for comment within the next month.

Further agenda

I also intend to continue with further papers and other activities on particular issues within the psychiatric disability area. I cannot foresee the Commission being in a position in the near future to undertake a large scale inquiry like its initial Mental Illness Inquiry - but we may hope to do much of the same task piece by piece by less spectacular means.

Experience with the DDA

I would also like to make some more general comments today on the operation of the Disability Discrimination Act 1992 (Cth). Over the last five years the Commission has given priority to the implementation of the Act, compared to more generalised approaches to human rights and disability.

This Act, of course, applies to people with a psychiatric disability along with other classes of people with a disability. As the National Inquiry report emphasised, human rights for people with a mental illness require dealing with discrimination across the full spectrum of economic, social, cultural, civil and political activity. Their human rights are not properly viewed solely as issues of availability and appropriateness of mental health services - important though those are.

The DDA has a great advantage over the Commission's more general human rights jurisdiction in that legally enforceable remedies are available, rather than the Commission being restricted to techniques of exposure and persuasion.

The efforts of the Commission and other organisations, especially disability community organisations, for the implementation of the DDA have unquestionably resulted in some major achievements for the human rights of people with a disability in Australia. There have been major advances on transport, access to premises and telecommunications in particular. There have been some benefits for all people with a disability in this. But clearly these areas of achievement are most directly relevant to people with physical and sensory disabilities and less so to people with a psychiatric disability.

The majority of DDA complaints from people with psychiatric disability have been in the areas of employment and education, with some also in the areas of insurance and accommodation. I have to acknowledge that the results achieved under the DDA in these areas, for people with a disability generally and for people with a psychiatric disability in particular, have been less impressive. In particular, employment rates for people with a disability do not appear to have been improved markedly since the passage of the DDA. In fact representation of people with a disability within Commonwealth employment has decreased. It has been said that there are more people with a disability in Commonwealth employment than have been reported, since people are not voluntarily disclosing their disability. But this in itself is a disturbing sign if it indicates that even within the Commonwealth public sector people remain fearful of disclosing psychiatric or other hidden disabilities because of issues of stigma and potential discrimination - and perhaps also that they do not expect sufficient benefits in terms of adjustments to accommodate their disability to justify the risk or stigma that may result from disclosure.

It is difficult to find evidence of complaints of disability discrimination in employment achieving change on a systemic basis rather than only addressing a relative handful of individual situations. There are limitations in complaint handling and in general anti-discrimination provisions in achieving real progress towards equal opportunity, at least for people with a disability This of course was the reason for the provision in the DDA for making disability standards, so that rights and responsibilities could be specified more clearly and fully and so be made easier to implement and, if necessary, enforce.

Consultative processes regarding disability standards in employment have run from 1995 to 1998, with considerable investment of time and effort by disability community organisations, by employer organisations and by the Commission. These processes have failed to identify non-prescriptive approaches with any broad support. They have confirmed the difficulty of identifying appropriate prescriptive approaches across differing employment situations. I do not mean to write off the prospect of achieving standards. There is a very important role for standards if they can be achieved, particularly in making plainer the existence and meaning of the duty under the DDA to make reasonable adjustment where required.

In the preparation of the draft employment standards, there was considerable support for the idea of incorporating practical examples of reasonable adjustments. Regrettably, there seems to be little information on good practice in accommodating psychiatric disability in employment.

Much of the Commission's work on disability issues consists of advising, encouraging and persuading mainstream regulatory bodies, as with our work on building access and telecommunications. These processes are often low profile and unspectacular but achieve important, far reaching reforms to enable people with a disability to be fully equal participants in Australian society.

I am convinced, however, that disability rights issues require a higher profile approach than has been adopted in the past. In our work on disability rights we are now using some of the approaches used in the more general human rights area. They include an increased emphasis on publicity for and public participation in the Commission's work. In particular, the public inquiry model seems very suitable for broad policy issues affecting access and equality for people with a disability, such as those covered by our recently announced inquiry into closed captioning of television for deaf and hearing impaired people.

I intend to apply this model to other disability issues in future where appropriate, including as a possible part of the investigation of significant complaints of broad relevance to people with disabilities. In the Commission's present budgetary circumstances, this is only possible where an inquiry can be conducted with minimal resources and within existing staffing. I propose to discuss with government in the coming year some disability rights issues where an effective inquiry could be conducted with specific additional funding.

Conclusion

The rights of people with disabilities require more and more urgent attention than they have received to date.

People with disabilities continue to endure rights violations, exclusion and poverty more than any other group of Australians other than Indigenous people. That is why

I am so pleased that the theme of this year's World Mental Health Day is Human Rights and Mental Health and that a major focus of the Day is the Proclamation prepared by the World Federation for Mental Health. That Proclamation re-affirms existing international commitments to respect, protect and promote the human rights of people with mental illness. I am pleased today to commend it to the Australian Government for its support and signature.

The continuing violations of the human rights of people with mental illness is also the reason why I am determined to adopt new directions and new approaches in our work. A higher and more effective level of performance is required of the Commission - difficult to build and sustain with our budget cut so drastically but nonetheless essential if there is to be any significant improvement in ensuring basic human rights.