Disability Research and Education.
The Donald Beasley Institute is a national, independent, non-profit organisation based in Dunedin, New Zealand.
Plain English Summary
The Donald Beasley Institute has just finished a project on Article 12 of the United Nations Convention on the Rights of People with Disabilities (UNCRPD).
Article 12 says that all people, no matter what their disability is, have full legal rights, just like non-disabled people do.
As a state party to the UNCRPD, Aotearoa New Zealand has to make sure people have this right.
Some of the ways that they can do this is by:
“Supported decision-making” is when family, friends, or other people help a person with a disability think more about a small or important decision and its consequences. When people think more about a decision, they can find a decision that gives them what they want or they can avoid decisions that give them what they don’t want.
The people who have most often been stopped from making their own decisions are people with developmental and learning disabilities, dementia, acquired brain injuries, and mental distress.
Most people agree that the UNCRPD is a good thing but some think that we still need laws that allow decisions to be made for people with disabilities by other people, whether or not the person agrees with the decisions. This is called substitute decision-making.
New Zealand has laws that allow substitute decision-making. The UNCRPD is making us look at those laws to see if they should stay the same or be changed.
The research from other countries tells us what makes it hard for Article 12 to become part of life for people with disabilities. Some of the problems are that:
Aotearoa New Zealand and other countries that have signed the UNCRPD, still have to do a lot of work to make sure people have the rights in Article 12.
Laws and policies may need to be changed, and opportunity for people to practice supported decision-making in all areas of life needs to be put in place.
About the research
In 2016 the Donald Beasley Institute was commissioned to undertake an integrative literature review exploring Article 12 of the United Nations Convention on the Rights of People with Disabilities (the "UNCRPD"). The purpose of the report was to provide information and direction about the ways in which Aotearoa New Zealand could give effect Article 12 of the UNCRPD; the right of disabled people to equal recognition before the law. As a state party to the Convention, Aotearoa New Zealand has recognised that it has an obligation to give effect to the rights in Article 12. Specifically, the report responded to a series of questions provided by the Office for Disability Issues and begins with an overview of states parties’ obligations set out in the Convention and Article 12, including obligations to adjust legislation, policy, and practice so to:
The significance of the obligations in Article 12, and the subsequent radical departures from traditional understandings of legal and mental capacity they require, pertain to all disabled persons but relate most significantly to groups most who have frequently been obstructed from exercising their legal capacity. Most typically, these are people with developmental and learning disabilities, dementia, acquired brain injuries, and mental distress.
Although there is general consensus with the spirit of the Convention, issues of tension remain due to dramatically different interpretations being posited about the nature and extent of states parties’ obligations, particularly those related to the implementation of supported decision-making at a systemic and practice level, including debates about:
Most critically, there is strong disagreement regarding whether substituted decision-making is a necessary last resort option or whether it can be replaced in its entirety by different forms of supported decision-making, for example, facilitated decision-making.
The Article 12 report identifies and explores specific approaches and mechanisms for supported decision-making that have been signalled in the literature, or have been implemented by states parties committed to embedding Article 12 of the Convention in the daily lives of disabled people. The most extensive body of research relating to Article 12 of the Convention articulates the critical elements required to ensure that will and preference remains central in all situations involving disabled people who require assistance with decision-making. A significant volume of literature also outlines the ways in which states parties, non-governmental organisations, and disabled persons’ organisations have implemented legislative and policy change and / or provisions for support in practice or pilot programs that give effect to Article 12.
A number of challenges have been identified in the literature as having the potential to derail states parties’ efforts to give effect to Article 12 and embed supported decision-making within their particular jurisdictions. These challenges include: out dated understandings and perceptions of disability and their subsequent impact on the treatment of disabled people; ensuring supporters are trained to provide effective support, given the limited resources available; the complex and subjective process of obtaining people’s will and preferences; system and service issues that frustrate the realisation of disabled persons’ will and preference; the tendency to favour risk-avoidance and paternalistic intervention; implementing robust and appropriate safeguards; and disabled people often having limited or absent close support networks who could provide support with decision-making.
Available literature has evidenced that states parties have often taken a conservative position on the implementation of Article 12; that is they perceive substituted decision-making (and thus involuntary treatment or detention) as sometimes being necessary in last resort and extreme cases and, consequently, have developed supported decision-making initiatives alongside the traditional paradigm of substituted decision-making. It is apparent that considerable tension exists in relation to how to interpret the wider intent of Article 12 of the UNCRPD, and consequently, how states parties should proceed to implement it in legislation, policy, and practice. While there are robust and well-considered arguments emerging from both sides of the debate, to date, no states parties have implemented the required level of legislative, policy, and practice change for their efforts to be recognised as giving full expression to Article 12, according to the interpretation of Article 12 held by the Committee on the Rights of Persons with Disabilities. In order to align with the Committee’s interpretation, states parties need to: be prepared to undertake significant change to legislation, policy, and practice; and expend time and effort to identify, develop and embed supported decision-making processes and the necessary safeguards for both disabled people and their supporters.
Dissemination of research findings