Is the placement of young
people with high support needs in nursing homes a breach of their human
rights?

Dr Sev Ozdowski OAM, Acting Disability Discrimination Commissioner Paper presented to Conference on Young People In Nursing Homes 17 June 2003 Melbourne

 

Introduction

Allow me to commence by acknowledging the traditional owners of the land
on which we meet today, and by so doing remind ourselves that Australia's
cultural traditions stretch back many thousands of years. I acknowledge
also people with disabilities here together with advocates and other conference
participants.

May I apologise that Graeme Innes, my deputy disability discrimination
commissioner, is not participating in this conference as planned. This
is because I have asked him to represent the Commission at the second
United Nations General Assembly working group meeting considering the
development of an international convention on the rights of people with
disabilities. He will be doing this very important work in New York for
two weeks.

In return, he asked me if I would take his place and deliver this paper,
and I am pleased to be able to do so. Because both of us, and staff in
the disability rights area of the Human Rights Commission, hold the clear
view that leaving young people with high support needs in age-inappropriate
situations such as nursing homes for older people is an important issue
which the Australian community must address.

My task today is to consider the problem from the human rights context-
an appropriate one in my roles as Human Rights Commissioner and acting
Disability Discrimination Commissioner.

I want to firstly consider Australia's Disability Discrimination Act.
Secondly, I will examine Australia's Human Rights legislation, taking
into account our national and international obligations in this area.
I then want to comment on the practical problems of seeking an inquiry
by the Human Rights Commission. Finally, if such an inquiry were sought
and agreed to by the Commission, consider how its results may progress
the issue. That's a lot to consider, so I had better get on with it.

The Disability Discrimination Act

The Disability Discrimination Act, or DDA for short, came into force
in March 1993. It makes unlawful direct and indirect discrimination against
people with disabilities and their associates on the grounds of those
disabilities. It is complaints based legislation, so unlawful actions
may continue until a complaint is successful in preventing them.

So what impact has the DDA had so far?

As I have said before, perhaps assessing the impact of the DDA is like
what Chou En Lai is reported to have said when he was asked in the 1970s
about the impact of the French Revolution: "It's too soon to tell".

But I think it is clear that, as with race and sex discrimination, we
have seen some major shifts in social and institutional attitudes about
disability.

It is becoming more broadly accepted that people with disabilities are
inherently members of the Australian community, rather than a separate
group to be pitied, segregated or ignored.

Segregated life is no longer thought of by most people as the best and
inevitable thing for everyone who happens to have a disability -- although
not all of the resources to make community living a success for as many
people as possible have followed this change in attitudes.

Therein lies part of the problem this conference is considering.

These changes in attitudes are hugely important. Time and again voices
from the disability community remind us that attitudinal barriers can
block access and opportunity just as effectively as physical barriers
can.

Paradoxically, though, I think that the Disability Discrimination Act
has had a bigger impact because we have not tried to change community
attitudes head on. The Commission has not spent most of its money on advertising
campaigns attempting to change attitudes, or lecturing people about what
to think or say. Australians do not seem to take very well to that sort
of thing anyway.

What we have tried to do more directly is to make a difference to things
that affect the ability of people with disabilities to participate in
major parts of the life of our society:



Complaints, standards development and other processes under the DDA have
achieved major change in public transport access, such as the introduction
of accessible trams now happening here in Melbourne.

The Scott v Telstra case had a major impact on telecommunications for
people who are deaf by making TTY's available.

The Maguire v SOCOG case has made the world wide web more accessible
for vision impaired people.

We are working on standards to provide improved equity in education and
better access to buildings.

Some of the work going on under the DDA will improve the ability of people
with disabilities to live in the community and in their own homes - through
more accessible transport systems, and more accessible facilities in areas
such as shopping and health care facilities. We are in the early stages
of work to ensure that more private housing is available which is accessible
or at least adaptable for access when someone acquires a disability or
when someone with a disability wants to move in to a new house. In the
long term this work should expand the range of accommodation options available.

Limitations of the DDA

But at the same time we need to be clear that the DDA is not an all purpose
tool.

The DDA is a discrimination act, not an act establishing positive rights
to receive whatever assistance and services may be required to secure
equal participation and access in the community.

There is a distinction between requiring non-discrimination and access
in the services which are provided -- which the DDA does require -- and
requiring services to be provided which are not -- which the DDA does
not require.

This is not a distinction which necessarily makes sense to someone who
is seeking equality and access, and the line is not always clear, but
it is a distinction which is there in the law as we have it.

I would not want to deter anyone from testing out the application of
disability discrimination law to important issues such as this but I have
to say that I am not sure that discrimination complaints under the law
as we have it now in Australia would provide a remedy.

Recognition of broader human rights

There is some recognition in United Nations human rights documents of
broader human rights for people with disabilities to receive necessary
supports and services. This includes the Declaration on the Rights of
Disabled Persons and the UN Standard Rules On The Equalisation Of Opportunities
For Persons With Disabilities. However, these documents do not represent
binding international law. While they provide a useful program for action,
they provide no means of monitoring and accountability.

For these reasons I regard as very positive the current work towards
developing a Convention, a binding treaty, on human rights and disability.
If completed, it should provide specific recognition of people with disabilities
and their rights.

But even with a binding treaty, international standards are at best only
a guide and an inspiration for action here at home. 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.

Each UN convention needs to be signed and ratified by the Australian
government before it is binding on Australia in international law. Even
then, an international treaty has very little status in Australian law
unless implemented by Australian legislation.

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

Human rights developments on disability in Australia

As in many other countries, the 1981 International Year for people with
disabilities provided a pivotal point for community activism on disability
issues.

1981 also saw the passage of the federal Human Rights Commission Act.
This Act, and the Human Rights and Equal Opportunity Commission Act which
followed in 1986, incorporated international rights into federal law --
but only very indirectly and incompletely. These laws only applied to
actions of the federal government. Also, they did not create any enforceable
rights or duties -- only a power for the Commission to investigate complaints,
seek to resolve them by conciliation, and report to Parliament on matters
that could not be resolved.

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.
There is of course much evidence in 2003 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.

How to advance a broader human rights agenda?

It is not acceptable for us as a whole society to say we do not have
the resources to provide equal access in the form of age-appropriate accommodation
for people with high support needs.

These are the sorts of needs which are all too commonly discussed in
disability circles as "unmet needs". And all too commonly these
needs are not discussed in wider public and political debate at all.

But if as a society we are serious about human rights then these needs
must not remain unmet.

The numbers of young people with high support needs are relatively small.
The position of young people with high support needs as a small minority,
even among people with disabilities, no doubt has contributed to their
issues often being overlooked. The small numbers involved, though, mean
that the overall costs of more appropriate accommodation would also be
small in the context of overall government resources.

In my view, some of the stories about young people with high support
needs and their inappropriate accommodation clearly constitute cruel inhuman
and degrading treatment as it is defined in Australia's existing human
rights treaty obligations.

Of course we should not tolerate such a situation for a person simply
because he or she has a disability.

This is a society that can afford to spend over four billion dollars
a year on home renovations. Surely we, or government on our behalf, can
afford to provide Australians with the means of living as independently
as their disabilities will allow in accommodation with their age-appropriate
peers.

I do not have legal powers to compel governments to make resources and
programs available where they are lacking. But on behalf of the Human
Rights and Equal Opportunity Commission I do want to offer what assistance
and cooperation we can in pursuing issues facing young people with high
support needs more effectively as human rights issues, using the powers
that we do have available.

A possible area for public inquiry by the Commission

One possibility I want to leave with you for consideration is the possibility
of using the power of the Commission 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.

In a small number of cases we have conducted public inquiries into formal
complaints of discrimination under the DDA, or complaints of breaches
of human rights by the Commonwealth Government under the Human Rights
and Equal Opportunity Commission Act.

As I have said, though, there may be some difficulty in identifying appropriate
grounds for complaint in this area under the legislation that we have.

However, we also have power to inquire into particular areas of discrimination
or denial of human rights affecting people with disabilities.

An inquiry which is based on this broader power rather than on an act
of unlawful discrimination has the disadvantage that the end product is
the publication of a report rather than a binding legal finding.

A report and the process of conducting an inquiry could still be a valuable
tool in further highlighting the issues in this area.

On the other hand, though, you might take the view that yet another
report would not substantially advance the issues, and that what is required
is the taking of more specific actions.

In making a decision whether to run such an inquiry I would also have
to take into account the limited resources available to the Commission.

I currently have a team of three people, plus a deputy Commissioner working
on a part-time basis, taking responsibility across all areas of policy
under the DDA, so you can see that we have to plan the use of such a small
resource fairly carefully.

This conference will, no doubt, set agendas for future action in addressing
the problem under discussion. Any inquiry by HREOC would only be a part
of that agenda. If undertaken it could focus some further attention on
the issue in the broader public arena. It could draw out information from
governments and service providers on costs of current services, and be
able to look at some comparative costings for alternative services. It
would probably take submissions from across Australia, and end with a
published report. If this fits with the other strategies upon which you
decide, I would certainly give requests for such an inquiry serious consideration.

Whether or not an inquiry by HREOC proves a feasible and desirable part
of strategies in this area, I want to conclude by again assuring you that
I am very interested in contributing to effective action to provide young
people with disabilities with more appropriate accommodation options consistent
with their human rights.