1. Maximizing Decision-making capabilities for the exercise of legal capacity
Presentation to Conference on Disability and Legal Capacity under the CRPD
Harvard Law School – February
By Michael Bach
Canadian Association for Community Living

2. Legal Capacity: Recognition of a Person’s Right to Make
Health Care Decisions
CRPD Articles: 15, 25, 26
Financial/Property Decisions (purchase, sale, credit, investment, will) CRPD Articles: 12(5),28
We all want to make our own decisions about how we live our lives.
In this project we are focused on three kinds of personal decisions that adults have a right to make for themselves. Give examples of each:
Personal care and personal life decisions – where do we live? What to do in the day?
Health care decisions – giving consent for certain medical procedures
Financial and property decisions – how to spend our own money, applying for credit, buying things.
Personal Life Decisions (where to live, relationships, participation, access, employment, mobility and supports) CRPD Articles: 13, 14, 15, 18, 19, 20, 23, 25, 26, 27, 28, 29, 30

3. To whom does this recognition of legal capacity get ascribed
To whom does this recognition of legal capacity get ascribed? On what basis?
An adult/individual of age of majority – to whom, at a minimum, personal will can reasonably be ascribed by at least one other person.

4. Types of Decision Making Status
community
Autonomous
Supported
It is important to view these types of decision making status in very practical terms, to visualize where supported decision making fits, and the role that it could play in assisting people to maintain full legal capacity.
Types of decision making status are about the rights and relationships of individuals to other parties they rely on for access to needed goods and services. We start with a presumption of capacity, as does Article 12, of individuals who face making decisions in their adult lives – about their health care, personal care, and their property and finances.
The State recognizes the rights of individuals with disabilities to make personal decisions, based on a recognition of respect for the autonomy of individuals.
But individuals do not make decisions in isolation. They make them in relation to others
Health care professionals from whom they may need interventions
Financial institutions – who determine access to credit and enter contracts with individuals to hold and invest financial assets (e.g. bank accounts)
Various other third parties in the community – to rent or purchase housing, space for small businesses, transportation, employment, etc.
The way that most people access these goods and services, and enter contracts and agreements for that purpose, is via the ‘autonomous’ decision making status. This status assumes that the individual considers decisions, and options in his/her own mind, fully understands the nature and consequences of entering an agreement, or giving consent, for goods and services, and can communicate his/her decision in ways understood by others.
All these parties (on the left hand of the slide) must be satisfied the individual can enter the agreement for these goods and services. If a physician is not satisfied, for example, that a person can give informed consent – i.e. understand the nature and consequences of a medical intervention, and communicate this to a physician, along with a ‘yes’ or ‘no’ to the intervention, the physician cannot proceed to give the intervention. To do so, without some formal procedure for obtaining consent would expose the physician to liability for battery. Unless, it was an emergency situation – the fact of the emergency usually protects the doctor from liability in acting unilaterally without consent, as long as he/she can demonstrate due care and diligence in acting. For third parties entering any other kind of contract with an individual, they too have responsibility to make sure the individual understands the nature and consequences of a decision to enter the contract (e.g. for a lease for an apartment). If they knowingly enter an agreement with an individual they believe is not able to understand the nature and consequences of entering the agreement, the law usually provides that the agreement can later be declared null and void, leaving the party liable for any costs incurred under the contract to that point.
In cases where one of these parties is not satisfied that a individual can give informed consent, or enter an agreement, the only other option has been to have the agreement made under some kind of substituted authority to make decisions for individuals. For people with disabilities in community and institutional care, this authority is often assumed informally by the service provider, or automatically granted to the institutional authority in cases of ‘involuntary committal if no other substituted authority is in place. Increasingly, people with significant intellectual, communication and psycho social disabilities are under some form of guardianship, based on applications by others (family, the state) to have their legal capacity to act removed and vested in these other authorities. As well, in many jurisdictions people who for most of their lives presume they will maintain their autonomous decision making status, can designate powers of attorney and other decision makers through advance directives – that define a ‘triggering’ point at which the person voluntarily submits to others making decisions for him/her, but on conditions established by the individual in the advance directive or enduring power of attorney.
Article 12 of the UN Convention, provides an alternative to the very restricted understanding of what autonomous decision making is presumed to require (an individual acting entirely on his/her own to understand the nature and consequences of a decision and to communicate his/her choice), and substitute decision making – which places people with disabilities at such risk of abusive treatment by others in institutional and community settings. The problem with substitute decision making is not only that it removes the legal capacity to act, usually in the case of people with disabilities, against their will and often without their knowledge. This very act, results in the social perception by others that the individual is not a full person, rather an object to be managed by others. This denial of legal capacity results in objectification and marginalization of people with disabilities, making them that more vulnerable to abuse by others – which we know from the research on violence against women, people with disabilities, children, results most fundamentally from a power differential between victims and perpetrators.
The CRPD recognizes a right to reasonable accommodation. With respect to legal capacity this should mean that people may require accommodations (plain language, translators and interpretors, training of the physicians or other parties about different forms of communication), in order to maintain their autonomous decision making status.
If, even with these accommodations, a person cannot be understood by other parties to an agreement, the alternative is specified in para 3 of Article 12, which recognizes a right to support in decision making. Supported decision making has been conceptualized, designed, tested, and to some extent written into law and policy over the past 15 years in a few jurisdictions in Canada, and is increasingly recognized in other jurisdictions. It is based on an understanding that persons are fundamentally interdependent beings, not autonomous, atomistic selves, who think and act in isolation from others. Our very understanding of ourselves is made in relation to others. Supported decision making provides for recognizing others as a personal network of support in decision making – who can provide assistance to an individual in understanding the nature and consequences of a decision, and in communicating to third parties an individual’s intent. This, then is a third decision making status. In many cases it will replace the need for substitute decision making, as long as a supported decision making network can be created, a group of people who know an individual well, their history, are committed to presenting and representing the individual as a full person to others, and who are committed to assisting in the decision making process.
The supported decision making status can be seen as a second to last resort of substitute decision making. Because there are many people with intellectual, communicational and psychosocial disabilities in institutions and community care, who do not have a group of committed people around them, this will take time to develop and investment by the state. Article 12 makes clear that this is an obligation of the state. However, until the conditions of supported decision making can be put into place (like a network), physicians and other parties are likely going to have to rely on some form of co-decision making or substitute decision making in those instances where they cannot assure themselves that an individual is providing informed consent. To do otherwise, would be to force physicians and other third parties to expose themselves to liability for entering agreements to provide goods and services without consent of the other party.
Co-decision-making status is a fourth type of status. In cases where a other parties do not feel they can obtain consent from a person, and the person is isolated in an institution or in the community and does not have people in their lives whom the person trusts to appoint as supportive decision makers, co-decision-makers could be appointed as an interim step, as long as the State continues to invest in developing personal relationships for an individual that he/she could later appoint as representatives for supported decision making. Co-decision makers have an obligation to assist the person in making decisions, guided by their best understanding of the person’s intentions and wishes.
Co-Decision-
Making
Facilitated

5. To achieve ‘equal’ recognition before the law requires a just allocation of decision-making status. So…
How do we decide who gets what decision-making status?

6. How do we allocate decision-making status ?
By maximizing each person’s decision-making ‘capability’ to carry out the ‘function’ of making personal decisions that give effect to, develop and constitute one’s personhood.

7. Sen: ‘Functionings’ and ‘Capabilities’
Functionings – the beings and doings of a person – like the doing of making decisions
Capabilities – the effectively possible – a capability is not an individual skill, but a possibility created through inputs of goods and services, social relationships, environmental context, etc.

8. ‘Tests’ of whether reasonable effort has been made to maximize decision-making capability
Autonomous – With decision-making assistance and reasonable accommodation on the part of other parties, are the other parties able to understand the person’s will/intention sufficient to enter an agreement?
Supported – If not, is the person able to appoint a trusted representative/network to assist in expressing will/making decisions?

9. ‘Tests’ of whether reasonable effort has been made to maximize decision-making capability
Co-Decision-Making – If not, would another person, with supports and by providing accommodations, be able to discern a person’s will and intention sufficient to assist them in making decisions?

10. ‘Tests’ of whether reasonable effort have been made to maximize decision-making capability
4. Facilitated – If not, as a last resort, appoint a facilitator – time-limited, decision-specific to facilitate making of needed decisions, with ongoing duty to invest in creation of decision-making capabilities – assistance, enabling relationships with others who commit to assisting a person in developing and expressing his/her will, etc.

11. Autonomous decision-making status
Supports & Accommodation
not yet feasible
Supports & Accommodationsufficient
Supported decision-making status
Supports & Accommodation
not yet feasible
Maximizing D-M Capability to exercise Legal Capacity
Supports & Accommodation
sufficient
Co-decision-making status
Supports & Accommodation not yet feasible
Supports & Accommodation
sufficient
Facilitated
decision-making