My body, my health, my decision

Care without Coercion, Inside Out & Associates and the Social Policy Research Centre, UNSW

Graeme Innes AM
Disability Discrimination Commissioner
Australian Human Rights Commission

Wednesday 14 November 2012

I acknowledge the traditional owners of the land on which we meet.

Peter and Ben rely on their parents daily support. Both have severe schizophrenia.

Both men acquired their disabilities 20 years ago. Neither of them work, nor do they have daily activities, or relationships with people outside their family.

Peter currently lives in a residential facility, with others who have psycho-social disability, not far from his parents home. Before his disability, Peter was working as a fitter and turner, just like his dad. When he was 20 years old he was assaulted, and has a brain injury. This brain injury triggered schizophrenia, which he's lived with ever since.

Ben lives just around the block from his parents, in a home they bought for him. He visits his parents several times a day, and relies on them for meals. Years of heavy anti-anxiety medication have left him intellectually impaired. Keith, Ben's father, is his best and only friend. The highlight of Ben's day is going fishing with his dad.

On a good day, both sons come home, and sit on their parents porch.

Keith and Patricia's dream is that their son's have more interaction with the community. Their greatest fear is what will happen to their boys once they are no longer alive to support them.

This is just one of the films the Australian Human Rights Commission will make for our Twenty Years: Twenty Stories project, celebrating 20 years of the Disability Discrimination Act in March next year. Unlike many others, the DDA, which is only a piece of equality or discrimination legislation, has not improved their lives. For them, some of the other human rights, which I'll talk about today, will need to take effect.

Back in 1993 the Australian Human Rights Commission conducted an inquiry into the human rights of people with mental illness. Sadly, many of the findings of that inquiry still remain relevant today.

The inquiry uncovered evidence that many thousands of Australians affected by mental health issues struggled daily to have their rights respected. Submissions to the inquiry noted that

Ultimately, human rights are not about words on paper, or ideas one talks about - real human rights for the psychiatrically disabled are about optimum care, and access to services in illness, and ensuring that in recovery your diagnosis does not deny you access to aspects of society others can fully partake of...

Quite often they [people] don't get what they want, they get what other people think they want.

Many witnesses to the inquiry appealed for appropriate public recognition of their rights.

[We want] the right to speak and represent ourselves directly, …

The inquiry found that there were many barriers that prevent people with mental health issues from participating in the advocacy and decision-making processes which directly affect them. For most, this exclusion is probably still the case. Yet, the right to health includes the 'right to control one's health and body, including … the right to be free from interferences, such as … non-consensual medical treatment'.

The issue here is the importance of autonomy, and inherent in this is the participation of people in health decisions that affect them. Participation is a fundamental principle of a human rights framework.

But what is a human rights framework?

A human rights framework is a set of essential principles that provide a baseline for human rights protection. The principles include non-discrimination - embodied in the Disability Discrimination Act, participation, monitoring and accountability. Today I want to focus on one of these principles, participation. It is intimately connected to 'care without coercion'.

The human rights framework can guide participatory decision-making, and promote relevant and sensitive programmes.

Now that's quite technical, so - what does it mean in practice?

Let me tell you about an organisation in Belfast, the Participation and the Practice of Rights (PPR) project. The project provides an example of how this technical framework can be used as a tool, to ensure that people are able to be involved in the decisions that affect them.

The main focus of the PPR project is the principle of participation. It works with disadvantaged groups, by assisting them to assert their right to be part of social and economic decisions which affect their lives. PPR currently works on a number of issues, including mental health. The project has found that people can utilise a human rights framework as a mechanism to ensure that the dignity of everyone is properly and equally respected. It can also be used to monitor what government is doing regarding the implementation of human rights, and observe the extent of people's participation in decisions that affect them.

An example of this is the Public Initiative for the Prevention of Suicide-Greater Shankill Bereaved Families (PIPS-GSBF) Rights Group, who have been working with PPR since 2007. Their aim is to improve mental health services in Northern Ireland, and to increase people's participation in health related decision making.

During the process of conducting the 'Card Before You Leave' program - the adoption of a new appointment system for all mental health patients in Northern Ireland to ensure they had an appointment within one week of discharge - the group monitored how government engaged with them during the implementation of the appointment system.  You might call it 'the terms of engagement'.

The group monitored the way meetings would work, and whose voices were heard. They measured whether participants could place items on the agenda, whether service users could chair meetings at times, and looked for evidence that service users views influenced the shape of decisions.

They also monitored whether the participation of service users was encouraged, for example, were there expenses to cover transportation and childcare; did participants have the resources they needed to be prepared for the meeting, to attend the meeting, and to participate in the meeting. Did they have sufficient advance notice to attend, papers and documents in accessible formats. At the meeting itself, was there the avoidance of the use of jargon and abbreviations, each of which could exclude people from discussion.

These terms of engagement came about in part due to service users own descriptions of their experience with existing public consultation structures about mental health:

• Important decisions were made without us
• Government always controlled the agenda
• We felt talked down to, because of the language used
• We felt afraid of feeling stupid
• There was too much waffle, and not enough focus on the purpose of the meeting from government

These comments are all well-known barriers to active and informed participation.

By monitoring the 'terms of engagement' or indicators - designed by the group - the group were able to discuss with the relevant health authorities how best to improve the process of participatory decision making.

While all issues have not been resolved, and work continues, the human rights framework enabled this group to use human rights as tools, and demand participation as a right.

The story is an example that begins to show to mental health service users, their families, their carers, and their representative organisations, how they can implement the human rights of people with a disability. It also shows to government workers, and health workers, be they doctors, nurses, allied health professionals and others, how to respect and protect the human rights of those in their care.
If you would like to know more about the work of this group, their website is www.pprproject.org

So what's happening in Australia in this area?

The Convention on the Rights of Persons with Disabilities, or the DisCo as I like to refer to it, not just because its a catchy acronym1 but because I love the image of people with disability being able to go anywhere, even to the disco. The DisCo makes these things plain-
the importance of individual autonomy, and independence,
the freedom of people with disability to make their own choices,
that people with disability should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them.

Government, at all levels, is to closely consult with, and actively involve, people with disability through their representative organisations.

There are indications that government is actively working toward involving people with disability in decisions that affect us. For example, through the National Disability Strategy (NDS), the National Disability Insurance Scheme (NDIS), and indeed through the Mental Health Commission.

Australia's NDS is the central mechanism for implementation of the DisCo in this country. One of the priorities is ensuring inclusion and participation in community and person-centred care. This priority is directly connected to the NDIS.

The NDIS is intended to replace a rationed, demand driven service system, with a system that empowers the individual, based on need, with ability to purchase and direct their own system of supports. It will enable greater choice and control. It will intervene early after acquisition or diagnosis of a disability, and aim to maximise the person's economic and social participation. It will not define the person by their disability. And it will aspire to the sort of economic and social equality that is required to address the inequality that people with disability currently experience. It is aimed to address the dreams and fears of people such as Patricia and Keith.

It is an approach that demands participation!
Minister Macklin spoke recently at the National Press Club on the NDIS. During the speech she talked about how the NDIS draft legislation has been heavily shaped by what they have heard from people with disability, their families and carers. She also spoke of the NDIS Launch Transition Agency that will work with people with disability to deliver care and support.

The Minister talked of the feedback they have received about how best to include mental illness, and episodic disabilities, in the definition of eligibility. They have now included reference to psychosocial disability, because they heard clearly that this is necessary to properly recognise the impact of mental illness on a person's social abilities, and need for support, to function in society - for a person to manage their relationships, their home life, and work life. To make decisions about their life.

The Minister also spoke of monitoring the implementation of the scheme, and making sure that they would continue to hear from people with disability, their families and their carers, as the scheme continues to be built and implemented. These approaches mean that the NDIS has the potential to fulfil important components of a human rights framework.

Now I've been mainly talking about participation. Another important principle of the human rights framework is accountability - another technical term.

Accountability in human rights is not only about naming and shaming. It's also about identifying what is working well, and what is not working well - so changes can be made. Hopefully, those changes are to what is not working well. Let's leave what is working well alone! Or perhaps just keep an eye on it.

Of relevance to this principle of a human rights framework is the National Mental Health Commission - a component of the National Human Rights Action Plan and the National Mental Health Reform package. After all, one of the Commission's functions is to produce an annual Report Card on Mental Health, and Suicide Prevention.

The report card - you could call it an accountability card -  will let us know where we are doing well, and where we need to do better in mental health. Not only will it look at facts and figures, but also the everyday experiences of Australians.

Participation again. Monitoring for the accountability of mental health in Australia will necessarily involve participation. And indeed, in recognition of the need for this, the Commission has released their 'Paid Participation Policy'. This is an innovative policy. If implemented successfully, it will go some way to addressing a traditional barrier to the participation of people in decisions that affect their lives - the economic costs of participation.

It's refreshing to see the recognition of these costs to people with disability. One of the ironies of participatory endeavours is that they have frequently not considered the economic costs - while traditional decision makers sitting at the table were paid to be there - part of their salary - the ordinary person was frequently expected to be there on a voluntary basis. While not directly referring to a human rights framework, both the NDIS and the Mental Health Commission, with their concerns for hearing (and hopefully heeding) the voices of people with disability, could add immense value, and play critical roles in ensuring the adoption of essential elements of a human rights framework - participation, and monitoring, and accountability- and truly work for the benefit of people with disability including Peter and Ben.

These may provide the tools for service users, families, providers and communities, to free themselves from that constraint of people with disability, and unlock possibilities for support without the use of force. As Mary Robinson, former President of Ireland, and former UN Commissioner for Human Rights has said "Participation and the active involvement in the determination of one's own destiny is the essence of human dignity." This essence demands that if it's my body, and my health, it's my decision.

Thanks for the chance to speak with you today.