World Mental Health Day Address
Disability Rights
World Mental Health Day Address
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Chris Australian Psychiatric Disability Coalition National Forum |
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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
- to promote discussion of the potential benefits that might be gained
by providing for "living wills" in this area - to identify difficulties or barriers for the effective implementation
of living wills and - to seek information on research or policy development which has been
conducted or is being considered in this area.
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
- when, and under what conditions, the agreement or Power of Attorney
should take effect - who is to have responsibility for substitute decision-making and
for what decisions - what cross-consultation is to occur and
- the circumstances when revocation may be possible.
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
- appropriate terminology
- decision making
- substitute decision-makers
- participation and consultation
- relationship to individual treatment plans
- advocacy and self-advocacy implications
- issues of safeguards, capacity
- resource implications
- legislative and service considerations
- other interests and obligations.
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
- community treatment orders often amount to nothing more than a fortnightly
injection at a local medical clinic or a community mental health service - mental health consumers are often subject to a community treatment
order without receiving adequate case management, review or follow-up - mental health consumers subject to community treatment orders do
not have access to or support in accessing an appropriate range of services
that meet their needs for leisure, recreation, education, training,
work, accommodation and employment, as outlined in Standards for Mental
Health Services (Standard 11.4.A.4) - there is a preference for injection medication in the administration
of community treatment orders that is detrimental to consumers, as older
style medications with greater potential for harmful side-effects are
being used - community treatment orders restrict consumer participation in decision-making
about treatment and rehabilitation, without any formal provision for
negotiation of the orders and issues around medication.
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.