Human rights for people with intellectual disabilities in Australia: where to from here?

Human rights for people with
intellectual disabilities in Australia: where to from here?

Dr Sev Ozdowski OAM

Australian Federal Human Rights Commissioner and Disability Discrimination
Commissioner

Inclusion International 13th Congress, Melbourne 24 September

Speaking notes only: to be confirmed against delivery

Introduction

Allow me to commence by paying my respects to the Wurundjeri people of
the Kulin nation, the traditional custodians of the land on which we meet.

The abstract for my paper today indicated that I would discuss

• the limited use made by people with an intellectual disability of
  anti-discrimination laws in Australia;
• what prospects there are for more effective use of anti-discrimination
  law to advance human rights for people with disabilities; and
• needs for other human rights strategies alongside anti-discrimination
  law.

I will come to the uses of anti-discrimination law later. I want to start
with a few words about human rights and disability more broadly.

Human rights debate needs to acknowledge disability

I will not speak in detail about human rights conventions and disability
because this topic is addressed by my co-speaker in this session, Karl
Lachwitz. I will say though that international human rights law and human
rights debate has not yet acknowledged adequately or sufficiently clearly
that people with a disability are part of what the "human" in
human rights means. Equally, there has not always been enough attention
to human rights dimensions in disability discourse.

Clearer recognition of disability is needed in international
standards

I regard as very positive the consideration which has commenced within
the United Nations of developing a Convention, a binding treaty, on human
rights and disability.

The Universal Declaration of Human Rights, which was adopted in 1948
by the United Nations General Assembly, proclaims that all human beings
are born free and equal in dignity and rights and that everyone is entitled
to all rights and freedoms set out therein, without distinction of any
kind.

The two human rights Covenants of 1966 seek to translate the aspirations
of this Declaration into binding legal terms. Both of them set out a range
of rights and require these rights to be respected and ensured to all
individuals without any discrimination.

It should be clear that the "all" people whose rights are to
be respected and ensured includes people with disabilities, and similarly
that "any" discrimination includes disability discrimination.
Unfortunately, though, the drafters of these Covenants went on to list
a series of prohibited grounds of discrimination, such as sex, race, national
origin, political opinion and so on, and did not include disability in
the lists. These lists give people with disabilities the familiar feeling
of being overlooked, even though the Covenants actually do apply legally
to people with disabilities.

(The more recently drafted Convention on the Rights of the Child does
better in this respect, including disability in the grounds of discrimination
listed and containing some specific provisions on rights of children with
disabilities, including an equal right to education.)

Another problem with the human rights covenants as a basis for action
and international accountability on disability rights is that they do
not present anything like a detailed program of action.

In other areas such as women's rights, racial discrimination and the
prevention of torture it has been recognised that more detailed documents
were needed to spell out how human rights apply to a particular problem
or the situation of a particular group. This need it seems to me is particularly
strong for human rights and disability.

A more detailed document, the Standard Rules on the Equalization of Opportunities
for Persons with Disabilities, was adopted in 1993. The major problem
with this document is that it is non-binding.

It does not create legal obligations on governments to implement it.
It does not have the same provision for reporting and accountability built
into it as the human rights Covenants, or the Conventions on elimination
of racial discrimination or discrimination against women or the Convention
on the Rights of the Child.

It is this element of accountability that I regard as particularly important,
although the existing mechanisms for accountability in the human rights
system are in need of major improvement.



Australia has played a very substantial role in the development of human
rights instruments in the past.

I was pleased that my Deputy Commissioner Graeme Innes was able to participate
as part of the Australian delegation to the initial meeting to discuss
the proposed Convention on human rights and disability. I hope that we
can continue to participate in this process and that we can assist in
promoting wider involvement by the disability community in Australia.

International standards need national implementation

It should always be remembered, however, that international standards
at best only a guide and an inspiration.

The idea of standards imposed and enforced from overseas by some sort
of world government is really a fantasy. The United Nations is just that,
an organisation of nations, made up of sovereign states which all value
their independence as much as Australia does.

Very few Australians know that our country is usually extensively involved
in drafting UN human rights instruments; that each convention needs to
be signed and ratified; and that, even then, it has no domestic legal
status unless conferred by specific domestic legislation.

For international standards to make a difference in the lives of Australians
with disabilities there needs to be action here at home, not just in New
York or Geneva.

Human rights are rights recognised as inherent in each and every one
of us by virtue of our common humanity and innate dignity as human beings.
They are the rights that must be respected if we are each to fulfil our
potential as human beings. They are not luxuries - they are the basic
and minimum necessities for living together in human society.

By ratifying - becoming a party to - human rights treaties such as the
International Covenant on Civil and Political Rights and the International
Covenant on Economic Social and Cultural Rights, the Australian government
has undertaken obligations, including obligations to

• respect the human rights listed
• protect human rights from violation by others
• ensure the enjoyment of human rights without discrimination of any
  kind
• take the necessary steps to give effect to human rights
• ensure that victims of human rights violations have an effective remedy
  which can be enforced

A bill of rights for Australia?

Some of you may be aware that this year I have been promoting a National
Human Rights Dialogue. One of the aims has been to reinvigorate debate
about the possibility of a Bill of Rights for Australia, which could translate
the major international human rights standards into a form that has meaning
and effect here in Australia.

Australia is now the last country with the common law system to not have
that system supplemented by a Bill of Rights. Of course, that is not a
conclusive argument that we should follow the lead of other countries,
but it is at least a reason for thought.

I am not here to promote the idea of a Bill of Rights as the solution
to all human rights problems, or in particular as the response to all
issue of human rights and disability.

And I have admitted in speeches before now that I have been a late convert
to the need for a Bill of Rights in Australia.

The range of restrictions on civil liberties contemplated in response
to last September's terrorist outrage persuaded me that our fundamental
civil rights need more anchoring so that they are not swept away in times
of crisis.

But it is also clear that, crisis or not, rights taken for granted by
other citizens are more precarious for people with disabilities.

Issues of liberty and disability may justify a Bill
of Rights

As I have said, recent concerns regarding surveillance and intrusions
into privacy in the context of the "war on terror" have prompted
renewed public interest in a need for improved human rights protection.

But surveillance and a lack of privacy are daily realities for those
people with disabilities who are living in institutional environments.

One of the most direct impacts of the international human rights regime
on Australian law in recent years was in the area of sexual privacy.

An appeal to the international Human Rights Committee under the International
Covenant on Civil and Political Rights led to the federal government overriding
the provision of the Tasmanian criminal code which banned sexual acts
"against the order of nature" - whatever that means.

Human rights activists hailed this result as removing the last prohibition
in law of sex between consenting adults in private.

But in practice there remain restrictions on the sexual life, freedom
and privacy of many people with disabilities - for example, again, through
constraints imposed on people living in institutional accommodation.



The right to a fair trial and to equal treatment in the criminal justice
system is at the core of interest for human rights theorists and activists.
Even without a Bill of Rights or similar fundamental guarantees it is
one of those areas where Australians probably believe our system works
well in protecting the rights of accused people - perhaps even too well.

And yet, the strikingly higher level of representation of people with
intellectual and psychiatric disabilities in the prison population has
not very much public attention at all. It has not had anywhere near the
level of public attention that - rightly - the rate of detention of indigenous
people has had.

In the USA, fairness of investigation and trial for people with mental
disabilities is a subject regularly considered by superior courts as a
major constitutional law issue - even if that is largely because the death
penalty awaits at the end of the process in that country.

Here, the treatment of people with mental disabilities in the criminal
justice system is a specialised subject for a few dedicated advocates
and for too easily shelved law reform commission discussion papers.

Human rights is more than the right to be left alone

The overall title for today's conference sessions is "Liberty".
The sorts of rights I have been talking about are liberty rights. These
are the kind of rights which are most commonly considered for legal protection
in a bill of rights.

The perspective of much human rights thinking, influenced by common law
traditions and United States constitutional law, is that human rights
are about these kinds of liberties - about restricting intrusions by government.
Human rights are seen as the right to be left alone.

As someone who grew up in Eastern Europe in the communist era I would
be the last to downplay rights for citizens to be free from surveillance
and other arbitrary intrusions by government.

Equally, though, I grew up with the idea that rights are not always and
entirely the individual right to be left alone - that there are some positive
rights which require government action and resources to secure them.

All of us sometimes need to call on the resources of community and government
to be able to exercise some of our rights - even including the classical
"freedom from" or liberty rights.

You cannot have a right to fair trial unless government provides and
resources impartial courts and a fair system of investigation.

You cannot have free and fair elections without investing in an electoral
system secure from interference with results.

Disability rights have clear social dimensions

This social dimension of rights is particularly clear for rights for
people with disabilities.

It is now widely understood - at least within the disability community
- that the effect of a person's disability on their participation in society
depends on the social response to disability.

For example: of course a blind person cannot see. But whether he or she
can read depends on how education and information are provided.

A person with an intellectual disability may have more difficulty understanding
information. But whether they can succeed in understanding may depend
on the social context - how information is provided and what assistance
is available - rather than being a purely personal issue of level of impairment.

Inclusion for people with disabilities requires social
resources

Let me move from abstract issues to a specific example.

Nothing is more fundamental than education to a person's prospects for
effective or equal participation in our modern society and economy.

At the same time, everyone from the Prime Minister down now recognises
that the fit between work and family presents critical issues for our
society and economy, and for the opportunities open to parents of young
children, particularly women.

Child care, preschool education and after school care are part of that
picture.

Recognising these factors, a Special Needs Subsidy Scheme was introduced
in 1997 by the Commonwealth to facilitate inclusion of children with high
ongoing needs into mainstream child care services. This scheme provides
ongoing funding for additional staff and equipment where a child's needs
could not be met through the normal resources available to the child care
service.

However, from this year, funding for this scheme has been capped by the
Commonwealth. Looked at another way, demand for this assistance has expanded
to a point beyond the funds allocated.

I have been informed that this means that new applications are being
put on a waiting list, and in effect new approvals may only occur as children
in existing places move on.

It seems inevitable that these changes will restrict access to child
care for families with children with disabilities.

In a country like Australia, any assertion that there is just not enough
public money to go around is difficult to believe. It is always a matter
of priorities.



Is there really not enough money to ensure that children with additional
needs have an opportunity to benefit from child care and pre-school education;
or even to benefit effectively from mainstream school education? Is everything
else that public money is spent on really a higher priority than this?

Why should we accept that this is just another instance of "unmet
needs" instead of naming it for what it is - a lack of sufficient
action to ensure the human rights which as a nation we claim to be committed
to.

Of course there are limits to government resources. And calls for expansion
of the welfare state are very much out of fashion. But we are not really
talking about welfare here. We are not only talking about "unmet
needs".

We are talking about resources to enable people to enjoy free and equal
citizenship. To participate in society. In fact, in many cases we are
talking about resources to enable people to contribute and be productive,
rather than being dependent on more passive forms of welfare assistance.

Australia : the land of the fair go?

Australians do have a strong core national value of basic justice and
fairness, expressed vividly in the 'fair go' ideal. In opinion surveys
over the last decade or so, Australians have overwhelmingly agreed on
various rights as fundamental. Some of them received 100% endorsement,
including protection of rights of people with disabilities.

And in fact, much has been done in Australia to advance equal rights
for people with disabilities - particularly since the 1981 International
Year. My point is that much more still needs to be done.

Legislative developments

In the early 1980s those States which already had anti-discrimination
legislation, covering grounds such as race and sex discrimination, added
coverage of disability. Other later State and Territory discrimination
laws followed suit.

1981 also saw the passage of the federal Human Rights Commission Act.
The new Commission's jurisdiction was defined by reference to a number
of international instruments - including the Declaration on the Rights
of Disabled Persons and the Declaration on the Rights of Mentally Retarded
Persons. That was an important start, even though very little legal power
went with it.

Some of the content of international declarations on disability was given
more definite legal form in the Disability Services Acts which were passed
later in the 1980s. These set standards for how specific services for
people with disabilities should operate - including provisions for dealing
with complaints of abuse and for participation in how services operate.

What they did not do, however, was to create any enforceable right for
people who require support, assistance or other services to receive it.

To repeat the point, there is overwhelming considerable evidence in 2002
of continuing unmet need for disability services, support and assistance
- in areas including personal assistance and care, respite support for
family carers, accommodation, interpreting services, education aides,
and access to assistive technology.

Some of these issues may need to be advanced through public and political
pressure, and through improved human rights tools at the international
and national level.

Discrimination law and its uses

But I want to turn now to discuss a different set of tools that we already
have for advancing equality and human rights. I refer to the Disability
Discrimination Act and the closely equivalent provisions which exist in
State and Territory discrimination laws.

This is where the main focus of HREOC's disability rights work has been
over the last decade - although we have also done some important work
outside of the scope of the DDA, for example on sterilisation issues.

One reason for this focus is that the discrimination acts provide an
enforceable legal foundation for rights. Outside the areas covered by
these specific laws HREOC is limited to political and publicity approaches
- inquiries, reports, submissions, press conferences and so on.

These approaches can also be made to be very effective.

But a major part of the purpose of the passage of the DDA was to provide
people with disabilities with enforceable rights to deal with discrimination,
assisted by a national human rights commission, rather than that commission
being only able to issue reports which frankly might or might not ever
be implemented.

I will not spend time here detailing the provisions of the DDA, or the
record of what has and has not been achieved with it in almost ten years
since the Act commenced operation in 1993.

There are a number of recent speeches on these subjects and much else
on our web site.

The DDA has been underused on intellectual disability
issues

I want to come quickly now to the central point for this paper.

Far less has been achieved for people with intellectual disabilities
using the Disability Discrimination Act than has been achieved for people
with physical and sensory disabilities.

As I hope you will accept at once, that has not been a result of any
lack of appreciation by me, by my predecessors as Commissioner or by Commission
staff of the human rights of people with intellectual disabilities.

Part of the reason has been that it has been easier to find effective
strategic opportunities in other areas.

Not that it has been easy negotiating multi million dollar programs to
make public transport accessible - as we have done - or getting agreement
to make telecommunications accessible for deaf people - where great progress
has been made even though more remains to be done. But it has been possible
to find a path forward on these issues.

One reason is that lack of access in these areas is clearly covered by
the unlawful discrimination provisions of the DDA. By contrast, application
of the DDA to issues like institutional living has been much less clear.
Most progress in this area has come through political processes and through
use of Disability Services legislation.

Standards development has not yet benefited people with
intellectual disabilities

Another reason is that for a variety of reasons there has been less progress
in developing Disability Standards under the DDA where there are particular
issues for people with intellectual disabilities than in areas where the
major issues are for other parts of the disability community.

When the Act was passed, setting of detailed standards was seen as the
main means for achieving large scale systemic progress towards eliminating
discrimination, instead of relying only on individual complaints under
the very general provisions which already existed in other anti-discrimination
laws.

Standards for accessible public transport are expected to enter force
next month, and good progress is being made towards standards for access
to buildings to be completed next year.

After extensive discussions and consultation, in June this year disability
standards on education appear to have been close to being recommended
by education officials to the Ministerial Council on Employment Education
Training and Youth Affairs for approval.

Regrettably, at a very late stage one major State - the name of which
sounds a lot like New South Wales - introduced legal advice into the process
which appeared to assert that the draft Standards go well beyond the existing
scope of the DDA. This was on the basis of a view that the DDA only requires
formal equality rather than any substantive measures to achieve equality.

This argument is obvious nonsense, as my staff pointed out at the meeting
of officials concerned.

If the DDA only required formal equality where everyone is treated the
same, then, for example, what on earth have transport ministers been doing
agreeing to spend hundreds of millions of dollars installing lifts at
railway stations and buying low floor buses? If there are steps for everyone,
that is formal equality, after all.

If only formal equality is required, what was Telstra doing agreeing
to provide deaf people with TTYs to be able to use the phone network?
Giving a standard handset to everyone provides formal equality even if
some people cannot use it.

However, education officials and Ministers understandably felt unable
to proceed until the legal issues raised were clarified. I am not clear
at this point what further clarification can be provided, or how.

If standards in this area do not progress we may be driven to the less
satisfactory option (for all concerned) of relying on litigation to resolve
issues. With that in mind, HREOC has filed submissions supporting an application
for the High Court to grant special leave to hear an appeal in the case
of Purvis v State of New South Wales. If the standards do move
forward, we would clearly be reconsidering the need for our involvement
in those proceedings.

Use of the Commissioner's amicus role could be developed
further

I want to say something briefly here about my role and that of the Commission
in appearing in court proceedings involving human rights and disability
discrimination issues.

With permission from the court, I can appear as an amicus curiae, or
friend of the court, in cases under the DDA which are not settled at the
conciliation stage within the Human Rights and Equal Opportunity Commission
and which the complainant decides to take to court.

This is not a role of appearing as an advocate for the complainant.

But this role does allow me to present perspectives on the interpretation
of the DDA and how it applies in particular situations. This could include
putting information before the court which we have gathered through public
inquiry processes or through other processes of consultation with the
disability community and other experts.

I am interested in working more closely with disability community organisations
in exercising this function. I would welcome suggestions towards criteria
and priorities that should be applied in deciding which cases to become
involved in.

If you want a public inquiry you need to ask for it

You may also be aware that the Commission has the ability to conduct
public inquiries into issues within our jurisdiction. Public inquiries
are one of the most important methods which the Commission has used to
collect views and information on pressing human rights issues, and to
gain increased attention for and action on those issues.

The best way to see HREOC conduct an inquiry on an issue is to write
or email to us asking for it to happen. I am not saying we will automatically
agree: we do have issues of jurisdiction and available resources to consider.
I am saying that I and my colleagues treat such requests seriously.

Complaints are the main vehicle for raising issues
under the DDA

The primary way for disability issues to be presented to the Commission,
however, is through formal complaints under the DDA.

Our legislative charter means we have to deal with complaints which are
within our jurisdiction. This contrasts with a request for an inquiry
not based on a complaint, which we may well not to be able to accept as
a matter of priorities.

We receive hundreds of complaints each year under the DDA - although
few of these seem to be targeted for large scale impact in eliminating
discrimination.

It is also clear that the DDA has been very much under-used by and on
behalf of people with intellectual disabilities.

Most of the high profile success stories have been

• in areas of access for people with sensory disabilities - like TTY
  telephone access for deaf and speech impaired people; and
• in physical access to public transport and other facilities.
  

It seems to me there are many issues affecting people with intellectual
disabilities where complaints could make a difference.

The Commissioner no longer has a "self start"
complaint power

When the Disability Discrimination Act was introduced there was also
provision for the Disability Discrimination Commissioner to pursue discrimination
issues as if a complaint had been lodged.

This "self-start" power had some technical defects which in
practice made it unusable, and it was removed when the machinery provisions
of the legislation were revised in 1999. It would be timely to consider
how an enforcement role such as this could be reinstituted.

For the present, however, we are left without such a power and so issues
will only be taken up if the community brings them forward.

Discussion is needed of how to get more impact from
complaitns about intellectual disability issues

I would like to promote discussion about

• how can we see more complaints made which are designed to have some
  strategic impact; and
• how we can make it easier for the community to use the power of the
  legislation.

Conclusion

Those are the questions I want to leave you with today.

I do want to move forward with you in developing new human rights tools.

I do want the Commission to stand with you in using political and public
processes to see issues of unmet need identified and addressed as fundamental
human rights issues.

Most immediately, I want your involvement in ensuring that we use the
tools that we already have as effectively as possible to advance the human
rights of people with disabilities in Australia.

Thank you.