Tim Stainton, UBC Centre for Inclusion and Citizenship, Brisbane, 2016 Supported Decision Making: An International Overview of Policy and Practice Tim Stainton, UBC Centre for Inclusion and Citizenship, Brisbane, 2016

UNCRPD: Article 12 affirms the rights of persons with disabilities to recognition as persons before the law (Art.12.1.) It further states that: States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. (Art.12.2.) States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. (Art.12.3.)

CIVIL DEATH = an exclusion from society and civil life. Article 12 challenges some of the most enduring and deeply embedded assumption in western jurisprudence: But if through defects that may happen out of the ordinary course of Nature, any one comes not to such a degree of reason wherein he might be supposed capable of knowing the law,...he is never capable of being a free man,...So lunatics and idiots are never set free from the government of their parents. (Locke, Two Treatises of Government, 1690) To make a Man capable of (I) giving a ferious and firm Confent, tis above all things necessary that he be mafter of his Reafon…if one is incurably lacking in reason that he is in all Legal and Moral Confideration to be accounted Dead. (Pufendorf , 1717) CIVIL DEATH = an exclusion from society and civil life.

RESERVATIONS Canada recognises that persons with disabilities are presumed to have legal capacity on an equal basis with others in all aspects of their lives. Canada declares its understanding that Article 12 permits supported and substitute decision-making arrangements in appropriate circumstances and in accordance with the law.

Australia made the following declaration in respect of Article 12: Australia declares its understanding that the CRPD allows for fully supported or substituted decision-making arrangements, which provide for decisions to be made on behalf of a person, only where such arrangements are necessary, as a last resort and subject to safeguards.

TWO KEY AREAS OF ACTION LAW REFORM SUPPORT PRACTICE SUPPORTED OR SUBSTITUTED SCOPE (HEALTH CARE, FINANCIAL, PERSONAL…ID, MH, AGING…) BALANCE (SDM VS SUBSTITUTED) REGULATORY AND OVERSIGHT (AUTHORITY OF SDM, SAFEGUARDS, APPEALS ETC.) SUPPORT PRACTICE DECISION MAKING SUPPORTS (communication, active support etc.) IDENTIFYING & SUPPORTING SDMs

LAW REFORM MOST COUNTRIES STRUGGLING WITH FULL IMPLEMENTATION OF SDM SOME EXCEPTIONS: COLUMBIA & BULGARIA ARE BOTH CURRENTLY DEVELOPING LEGISLATION MANY COUNTRIES INTRODUCING SDM ALONG SIDE TRADITIONAL MODELS

MAJOR CHALLENGES Lack of clear legislative framework in most jurisdictions – guardianship law and practice still predominate Confusion between guardianship reform (that rests on legal incapacity) and supported decision making that protects legal capacity lack of policy, funding and community capacity for developing and maintaining support networks (critical for those without appropriate relationships) Use of SDM for person experiencing acute psychiatric illness (elimination of compulsory treatment/hospitalization)

CHALLENGES CONTINUED Recognition in financial/contract situations Absence of mechanisms to protect against abuse Reluctance to recognize ‘relational capacity’ over traditional ‘understand the nature and consent’ Lack of safeguards to ensure SDM does not become covert substitute decision making Entrenched medico-legal culture

THE CANADIAN CONTEXT a lot of attention given to the legal framework of SDM since the passage of the CRPD Issues related to the service and support side have been acknowledge for some time, in recent years there has been an increase focus on legally recognized SDM in other areas, notably finance and health care. The Registered Disability Savings Plan (RDSP) has raised issues with regards to the control of financial instruments and the validity of SDM in this context. Challeneges provide learning opportunities but only if substitute DM is clearly acknowledged as last resort

Most Canadian province do not currently formally recognize SDM in Law. However, the landmark 1996 Representation Agreement Act in British Columbia was the first Act in the world to provide a legal basis for SDM and provide a true, legally binding alternative to guardianship or other forms of substituted decision making (Gordon, 2000). Similar legislative initiatives have followed in Manitoba, the Yukon Territory and Alberta (See The Vulnerable Persons Living with a Mental Disability Act, C.C.S.M. c. V90; The Adult Guardianship and Co-decision-making Act, S.S. 2000, c. A-5.3; Adult Guardianship and Trusteeship Act, S.A. 2008, c. A-4.2.)

Representation Agreement Act (British Columbia, 1996) The real innovation in this Act is its change to the way capacity is viewed and understood. relies on expanding the traditional concepts around communication and the nature and quality of the relationship. Section 3(2) notes that ‘An adults way of communicating with others is not grounds for deciding that he or she is incapable of understanding anything referred to in sub-section (1). Section 8 states that determining capacity should include whether the adult demonstrates choices and preferences and can express feelings of approval or disapproval of others and, whether the adult has a relationship with the representative that is characterized by trust.

Representation Agreement with Section 7 Standard Powers Minor and major health care Personal care Legal affairs and Routine management of financial affairs no specific capability requirement in order to make this type of Agreement. Adult needs help today Don’t need a legal professional

EPA & Representation Agreement with Section 9 Broader Powers Enduring Power of Attorney Complex financial and legal affairs Representation Agreement Sect. 9 Complex Health and personal care matters (refusal of life sustaining treatment, Ulysses override, experimental treatments, ECT, restraint) Arrangements for the care of minor children specific capability requirement must understand the types of decisions covered and the possible effects of giving these powers to your representative. Requires lawyer to complete

Making a RA There are 3 roles that can be assigned in a Representation Agreement: Representative Legal authority to assist you or to act on your behalf. Alternate representative Back-up Monitor Safeguard

Key strengths of RAA low cost and relatively straightforward means of setting up, the ability to adapt the instrument to the unique needs of the person, its reliance on trusting relationships as the basis for representation rather than one’s ability to formally express understanding the nature and effect of decisions, the legal authority it conveys on the representative. The basis of the representative’s authority is not their ability to make decision on behalf of the person, but their ability to best interpret what the person would choose based on their personal knowledge of the individual’s communication style and their social and cultural context.

NIDUS-Personal Planning Resource Centre and Registry provides a range of resources and training to assist people in setting up Representation Agreements and other personal planning instruments. This includes free or inexpensive forms to allow people to set up their Agreements. houses a voluntary registry for personal planning instruments to aid in finding appropriate documents when the need arises.

Key elements of a SDM system: an enforceable and easily accessible legal framework which guarantees both the persons right to make decisions for themselves and to receive the support to actualize it recognition of alternative means of communication recognition of relationships of trust as basis for SDM rather than capacity

means to develop and support strong personal networks particularly for those who lack any relationships of trust suitable for an SDM integration of SDM into daily practice as well as specific decision making events a system of support and registration for personal planning document development and utilization Mechanisms for dispute resolution & protection

THANK YOU DIVERSITY INCLUDES Tim Stainton, Centre for Inclusion and Citizenship University of British Columbia timst@mail.ubc.ca