Equal recognition before the law Balancing autonomy and protection in support for the exercise of legal capacity It is really great that you have come here to share your experiences and learn from each other. This hui has been intentionally created to bring together in the same space the diverse people and stakeholders to start, or continue, or build conversations on supported decision making. The key experience in common is challenges in making decisions about yourself, being able to access support to make decisions, and having those decisions made with support recognised by others as valid. And then having your decision implemented. I look forward to meeting you and learning more from you. While there is lots to talk about – to me it is important that we follow closely the practice of decision making with support, and understand clearly what it looks and feels like in practical, every day terms. At the end of the day, this is about helping as many people as possible lead good lives with choices and control like other people have. I know there are lots of different opinions and beliefs. These two days, for me, are a positive opportunity to move the conversation forward, and it may be the start of creating something better for New Zealand. Thanks to Auckland Disability Law for taking up the challenge with the hui, and great that Human Rights Commission joined up. Lots of thanks also to the Ministry of Social Development’ I would like to make a brief contribution by talking about that key obligation in the UN Convention on the Rights of Persons with Disabilities. It’s Article 12, called equal recognition before the law. Some people have said that Article 12 goes to the heart of what it means to be a person, to have an identity, and for other people to recognise that you can act in the world just maybe in a different way. The absence, therefore, equates to being a non-person. Paul Dickey, Senior Advisor, Office for Disability Issues 20 April 2016

International law States need to ensure equal rights for everyone. International Covenant on Civil and Political Rights: Article 1: All peoples have the right of self- determination. By virtue of that right they freely determine their political status and freely pursue their economic, social and cultural development. Article 16: Everyone shall have the right to recognition everywhere as a person before the law. Having choice and control about your life = is about self determination. From a legal and conceptual basis, there is a strong mandate with the international bill of human rights, particularly the International Covenant on Civil and Political Rights. It sets out obligations on States to ensure their people enjoy and exercise rights of citizenship. It sets the foundation of a rights-based approach – all people are born with an equal starting point and the same set of human rights.

Applies to disabled people 2006: Convention on the Rights of Persons with Disabilities Preamble: (n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices, (o) Considering that persons with disabilities should have the opportunity to be actively involved in decision- making processes about policies and programmes, including those directly concerning them. Over time, it become clear that some people were not experiencing human rights on an equal basis. States acting together at the United Nations developed separate treaties focusing on populations where more explicit clarity was needed to ensure equal experience of rights. In 2006, disabled people followed children and women, with the agreement to the Convention on the Rights of Persons with Disabilities. There were no new rights introduced. What the disabilities convention did is lay out for States what needs to happen so that their disabled people can have the same experience of rights, and be able to live a good life like other people. And by experience, this means both the recognition that you are holders of rights and that you can act on the rights.

A person with rights, who acts Article 12 says that every disabled person should have: the right to equal recognition before the law the right to enjoy legal capacity the right to exercise their legal capacity the right to access support to exercise their legal capacity safeguarding to protect their rights and prevent abuse and undue influence from the provision of support. The disabilities convention needs to be read as a whole, as many rights are interlinked. But Article 12 focuses specifically on what we are talking about today. Disabled people are recognised as persons before the law, who have the same rights as others. Further, it says that disabled people can also act on their rights. But some disabled people may need help or support to act or exercise their rights. The need for support should not diminish the disabled person’s ability to exercise their rights, or for their exercise to be any less likely to be implemented. Alongside the presence of support to enable a decision, safeguards should be in place to prevent abuse and neglect.

Rights-based approach Nothing should prevent a person from exercising their rights. Some people may need support. But the need for support does not transfer or mean the loss of legal capacity or responsibility. Focus moves … from whether a person has legal capacity or not to what support does a person need. The presence of support extends a person’s decision making ability. Applying a rights-based approach, nothing should be done to a person that limits or takes away their fundamental rights to self-determination. A rights-based approach changes the questions that need to be asked. The question moves away from asking whether a person has capacity or not – because, under a rights-based approach, this is always the case. Instead, the focus is on what support is needed so that the person can exercise their legal capacity. Either directly themselves, or for people with high support needs it may be through instructing others to act for them. What is new in Article 12, however, is how the presence of support for the exercise of legal capacity is treated. Some experts talk about redefining the concept of autonomy, so that in a disability space there are degrees of autonomy, and for people with high support needs, you get to a state of shared autonomy or supported decision making. That is, decision making can only happen with support. In the absence of support, the person could not normally make decisions independently.

Decision making context People need increasing support (impact, abilities, experience, place, time) Substituted Someone else decides Autonomous Decide by yourself Supported Decide together Here is simply diagram showing the relationships between the two old ways of thinking about decision making: You are autonomous and can make decisions yourself. Or you need another person to make decisions for you, because you can’t. Article 12 and the rights based approach brings a third space overlapping in between. Which is dynamic, porous, relational, and context dependent. Any one may need support in making decisions, depending on the impact of the decision and your experience with the type of decision. But in the end, you make the decision yourself and others accept your decision. Supported decisions are made together with the person and with support (for example, a person, technology or a mixture of things) Supported decision making is about dependencies, and is largely untested around the world. Introducing some recognition of supported decision making is intended to reduce the number of people with other people making decisions for them.

Balancing autonomy vs protection Common factors around the world driving change: growth of individualised living in the community increasing number of disabled people across all ages more older old people less natural social connections, busy lives, isolation shift in attitudes. Challenges to old ways of treating people. But also greater need for protection to preserve choice and control over life, and prevent abuse/neglect. Culture change, getting to a point of critical challenge, like in previous shifts. As more people living in the community, and the direction to more independent packages of support and person-directed support. Also, as the population ages and the growth of more older old people – both with dementia, and physical frailty, and social isolation. Similar question to be asked for younger people, looking at their peers same age group, want to do the same things, living in the community. Want to preserve informality and normal relationship as far as possible. And not have more paid people intruding in a person’s life. No where in the world is this paradigm shift happened. There are pockets of formal and informal practice, such as Canada, and in Australia some legislative change limited and pilot studies, but still in the current way of thinking.

From big ideas to ordinary practice Autonomy becomes shared and relational. ‘Rights, will and preference’ not ‘in their best interests’. Who decides? Who’s voice is it really? People with cognitive impairment affecting decision making are diverse – what’s in common? Keep it normal and informal? Or paid roles? Responsibility of authorities to protect, eg banks, hospitals, Work and Income, Inland Revenue. Need more research into how to implement safely and what works. One challenge with this area is that similar language can mean similar things. What is supported decision making to one person is substitute decision making to another, or it is just support for decision making. Some consistency in language and understanding would help make the conversations more real and progress change. What will also help is the emphasis on real life situations which show what is possible and the benefits. That is why a focus on building practice with supported decision making is important, if there is to be any widespread change. The Office for Disability Issues is pleased to have helped make this hui possible. We are also progressing work on the wider issue of support to exercise legal capacity this year, under the Disability Action Plan. Our first goal is to build a shared understanding of what we are talking about, and look at how New Zealand measures up.

Office for Disability Issues Focal point on disability within government, located within the Ministry of Social Development. Website: www.odi.govt.nz Email: odi@msd.govt.nz Facebook: nzofficefordisabilityissues Twitter: @nzodi Here is how to find out more information on the Office for Disability Issues.

Build a new disability strategy How can disabled New Zealanders and their whānau live a good life, feel valued, supported and able to participate in their communities? Fill in a survey, record a video, register for an event or find out how to run your own workshop. We are open for feedback until 24 May 2016. One more thing: we need your help in building a new disability strategy for New Zealand. The Office for Disability Issues has last week started public engagement that seeks to connect with as many disabled people, their families, organisations and anyone else that want to join the conversation on what it means to be able to live a good life. And for people that do not – what would enable them to reach having a good life? The new strategy will set out direction for Government for the next ten years. I encourage your active involvement in organised meetings, or you can set up discussions yourself. Go to this website www.jointheconversation.nz to find out more, get tools, or even to record a video to send in. www.jointheconversation.nz