Is it your decision, our decision or my decision when you need help making decisions? Iris Reuvecamp NASCA Conference 7 September 2017

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Is it your decision, our decision or my decision when you need help making decisions? Iris Reuvecamp NASCA Conference 7 September 2017

Setting the scene

UN Convention on the Rights of Persons with Disabilities (UNCRPD) UNCRPD promulgated to clarify, enshrine and enact the rights of persons with disabilities in its members states (Kerzner, 2011) Committee on the Rights of Persons with Disabilities = monitors compliance with the UNCRPD

UNCRPD - Purpose Article 1: To promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity

New Zealand and the UNCRPD New Zealand is a state party to the UNCRPD that is, it recognises that it has an obligation to give effect to the right in Article 12

Key points Persons with disabilities: Have the right to recognition everywhere as persons before the law Enjoy legal capacity on an equal basis with others in all aspects of life The State shall: Provide access to support persons with disabilities may require in exercising their legal capacity Ensure appropriate and effective safeguards are in place to prevent abuse

Some further clarification The General Comment to the Convention (General Comment No. 1, 2014) introduces the concept of supported decision-making and suggests that it is intended to replace substitute decision-making in all its forms, including guardianship and other proxy decision-making mechanisms, irrespective of a person s disability

Because Substitute decision-making: Involves the removal of a person s legal capacity Can involve the appointment of a substitute decision-maker, who is someone other than the person concerned Involves an objective `best interests judgement rather than the rights, will and preference of the person

And. Is therefore inconsistent with the UNCRPD

No one is entirely sure! Ongoing discussions/debate about: The abolishment of substituted decision-making and capacity testing The extent to which will and preference can be realised through supported decision-making The distinction between rights to legal standing (ability to hold rights and duties) and rights to legal agency (ability to exercise rights and duties) The factors that obstruct a person s legal capacity and how to remove them

Our current law

Principle of Autonomy

But - it all hinges on capacity

Capacity Presumption of competence: the Code of Rights (Right 7(2)) PPPR Act (ss5 and 93B) Age is not determinative of decision making capacity Suffering from a particular condition (e.g. dementia or mental illness) is not determinative of decision making capacity

It s not all or nothing Capacity is decision specific So you can have capacity to make some decisions and not others

For example Someone may have capacity to appoint an EPOA, but not make a decision about where they live/whether or not they wish to go ahead with a particular treatment

The legal test A person will be competent to make a particular decision if they can (KR v MR [2004] 2 NZLR 847; Re C [1994] 1 All ER 819): communicate a choice understand relevant information, such as the nature and purpose of proposed treatment appreciate the situation and likely consequences; and manipulate information, following a logical sequence of thought in order to reach a decision

Stupidity isn t enough

Not bad? Presumption of capacity Not related to age or condition Decision-specific

Capacity test is value-laden and discriminatory This is a functional assessment of capacity i.e. a person is found to not have capacity on the basis that a person s decision-making skills are considered to be deficient Traditionally seen as value-neutral But UN Committee test is valueladen and discriminatory towards disabled people

How is supported decisionmaking reflected in current law?

What is supported decisionmaking? Supported decision-making for disabled persons means making your own decisions about your lives. Sometimes you need support to make this happen. Supported decision making assists disabled persons to have control and choice in your lives (Auckland Disability Law Let s talk about Supported Decision-making )

What does it mean in practice? Supported decision making is a right, and needs to take account of your will and preferences. Sometimes we need support to make decisions. At times others may not agree with your decisions. Information about your options needs to be given to us in a way that we understand, and we need to have ways to communicate which work for us. We might need time to think about the choices, and we should have the opportunity to weigh up the pros and cons before making decisions (Auckland Disability Law Let s talk about Supported Decision-making )

Right to effective communication 1) Every consumer has the right to effective communication in a form, language, and manner that enables the consumer to understand the information provided. Where necessary and reasonably practicable, this includes the right to a competent interpreter. 2) Every consumer has the right to an environment that enables both consumer and provider to communicate openly, honestly, and effectively.

Diminished capacity Every consumer has the right to make informed choices and give informed consent, to the extent appropriate to his/her level of competence (Right 7(3) of the Code of Rights) Making a decision for you You make the decision Supporting you in making a decision

Right 7(4)

Not too bad? Best interests test But take into account consumer s will and preferences

Substitute decision-makers

Person lawfully entitled The people who may be lawfully entitled to make decisions on behalf of an incompetent adult are: An enduring power of attorney ("EPOA") for personal care and welfare or an enduring power of attorney for property (depending on the type of decision to be made) A welfare guardian or property manager, depending on the type of decision to be made Another person appointed under a court order

Two steps Does the Court have jurisdiction? If so, the court shall determine whether or not it should make an order, and (if so) what kind of order or orders, having regard to the primary objectives

The PPPR Act - jurisdiction Personal care and welfare: Presumption of competence Jurisdiction if the subject person lacks, wholly or partly, the capacity to understand the nature, and to foresee the consequences, of decisions in respect of matters relating to his or her personal care and welfare or lacks the capacity to communicate

The PPPR Act - jurisdiction Property: Presumption of competence Jurisdiction if the subject person lacks wholly or partly the competence to manage his or her own affairs in relation to his or her property

Primary objectives To make the least restrictive intervention possible in the life of the person in respect of whom the application is made, having regard to the degree of that person s incapacity To enable or encourage that person to exercise and develop such capacity as he or she has to the greatest extent possible

Protective mechanisms Lawyer for the subject person Careful consideration given to: Capacity Subject Person s views Appropriateness of orders (necessary/least restrictive intervention) Suitability of welfare guardian/property manager

Duties on legal guardians First and paramount consideration = promotion and protection of the welfare and best interests of the person While seeking at all times to encourage that person to develop and exercise such capacity as that person has to understand the nature and foresee the consequences of decisions relating to the personal care and welfare of that person.

And obligation to. encourage the person for whom the welfare guardian is acting to act on his or her own behalf to the greatest extent possible; and seek to facilitate the integration of the person for whom the welfare guardian is acting into the community to the greatest extent possible

And obligation to. consult, so far as may be practicable, the person for whom the welfare guardian is acting; and such other persons, as are, in the opinion of the welfare guardian, interested in the welfare of the person and competent to advise the welfare guardian in relation to the personal care and welfare of that person; and a representative of any group that is engaged, otherwise than for commercial gain, in the provision of services and facilities for the welfare of persons in respect of whom the court has jurisdiction in accordance with section 6, and that, in the opinion of the welfare guardian, is interested in the welfare of the person and competent to advise the welfare guardian in relation to the personal care and welfare of that person.

UN Committee The Committee recommends that the State party take immediate steps to revise the relevant laws and replace substituted decision-making with supported decision-making. This should provide a wide range of measures that respect the person s autonomy, will and preferences, and is in full conformity with article 12 of the Convention, including with respect to the individual s right, in his or her own capacity, to give and withdraw informed consent, in particular for medical treatment, to access justice, to marry, and to work, among other things, consistent with the Committee s general comment No. 1 (2014) on equal recognition before the law.

Questions/comments?

Acknowledgement Mirfin-Veitch, B. (2016). Exploring Article 12 of the United Nations Convention on the Rights of Persons with Disabilities: An Integrative Literature Review. Donald Beasley Institute: Dunedin

Contact Details Iris Reuvecamp Vida Law Ph: 021 869 361 Email: iris@vidalaw.co.nz