This paper presents a number of proposals for a more robust framework than currently exists in Ontario and other jurisdictions for protecting and advancing the right to legal capacity and autonomy without discrimination on the basis of disability. The main proposals are summarized in this section.
A. Key Concepts and Principles
1. Legal Capacity
Legal capacity reflects an individual’s right to make decisions and have those decisions respected by others. It is not to be equated with mental capacity. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) breaks the link between the two; mental capacity can no longer be considered a criterion for recognizing the right to legal capacity as it is discriminatory on the basis of disability. We describe the principle of equal recognition of legal capacity this way:
People enjoy and exercise their right to legal capacity differently depending on a person’s unique characteristics. A person’s autonomy and legal capacity is maximized equally to the extent that they access the supports and accommodations they need to exercise their legal capacity; and to the extent that supports and accommodations adapt to each person’s evolving decision-making abilities and capabilities.
The main concepts used in stating this principle are described below.
2. Decision-making Capability
‘Decision-making capability’ is proposed as a core concept for a new paradigm for maximizing autonomy and the right to legal capacity. The concept recognizes that people have a range of decision-making abilities. Combined with supports and accommodations by others, a person’s capability to make personal life/care, health care and financial decisions about their lives can be enhanced sufficient for making those decisions.
3. Decision-making Ability
People have a range of decision-making abilities including, for some, the ability to understand information and appreciate the nature and consequences of a decision, and communicate that decision to others in ways they will understand. This ability has been defined in much legislation and case law as the deciding criterion for determining whether or not a person’s right to legal capacity will be recognized and in what respects. Such provisions violate the right to equal recognition of legal capacity without discrimination on the basis of disability under the CRPD.
We define the minimum threshold of decision-making ability as follows:
to act in a way that at least one other person who has personal knowledge of an individual can reasonably ascribe to that individual’s actions: personal intention or will; memory; coherence of the person’s identity through time; and communicative abilities to that effect.
We suggest that competent decision-making processes can be designed guided by such abilities.
4. Decision-making Supports
People require a range of decision-making supports to make decisions in their lives, and to turn their decision-making abilities into decision-making capabilities. Governments should ensure access to at least six main types of decision-making supports under Article 12(3) of the CRPD, including:
· Life planning
· Independent advocacy
· Communicational and Interpretive
5. Decision-making Accommodations
Legal capacity laws have usually been designed on the basis that only those individuals who can meet the traditional ‘understand and appreciate’ test can legally engage in decision-making transactions. The duty to accommodate in Canadian law and in Article 5 of the CRPD provides a clear foundation for applying this duty to parties in decision-making processes.
6. Decision-making Status
Three distinct decision-making statuses are proposed through which people are recognized to exercise their legal capacity. These statuses are based on distinctions already emerging in law in Canada, and their definition is also guided by the CRPD’s mandate to ensure supports that enable the exercise and enjoyment of legal capacity without discrimination on the basis of disability.
a) Legally independent decision-making status –The minimum threshold for a person to act in this status is defined by the re-formulated ‘understand and appreciate’ test. That is, in a legally independent status there is reasonable evidence that the person:
· has the ability, by him or herself or with assistance, to understand information that is relevant to making a decision; and
· has the ability, by him or herself or with assistance, to appreciate the reasonably foreseeable consequences of a decision.
b) Supported decision-making status – People in this status access supports for the purpose of expressing and representing themselves to third parties, and/or processing information. People in this status do not meet the minimum threshold for acting legally independently. The minimum threshold for acting through the supported decision-making status is that there is reasonable evidence that:
· An individual can act in a way that at least one other person who has personal knowledge of the individual:
o can reasonably ascribe to the individual’s actions, personal will and/or intentions consistent with the person’s identity; and
o can take reasonable consequential actions to give effect to the will and/or intentions of the individual, which respect the individual’s dignity of risk.
c) Facilitated decision-making status – This status is for those individuals with significant disabilities who do not meet either of the minimum threshold tests for legal independence or supported decision making with respect to a particular decision or set of decisions.
A person could be in a facilitated status in respect to some or all areas of their lives. The fact that a person is in a facilitated status is no judgment about their cognitive abilities. It simply reflects the fact that there are not, as of yet, any relationships in place for this person where others can reasonably discern their will and/or intention and describe it to others.
Facilitators could be appointed by an administrative tribunal or through a planning document in which a decision-maker is appointed at a time when the individual was acting legally independently or in a supported decision-making status in respect of that appointment.
While legal capacity cannot be removed, the decision-making status through which one exercises it can be changed.
7. Presumption of Legal Independence
To ensure that no individual is denied the opportunity to be considered able to exercise their legal capacity through a legally independent status, a newly formulated principle of ‘presumption of legal independence’ is proposed based on the minimum threshold defined above:
All persons are presumed capable of:
· having the ability, by him or herself or with assistance, to understand information that is relevant to making a decision; and
· having the ability, by him or herself or with assistance, to appreciate the reasonably foreseeable consequences of a decision.
8. Functional Assessment of Decision-making Capability and Status
In making status determinations a ‘functional assessment’ of decision-making capability would be needed to deal with situations where there is reasonable question as to whether a person meets the minimum thresholds of either legal independence and/or supported decision making. The assessment should address the following questions:
1) Does the person appear to have the decision-making abilities to understand and appreciate the nature and consequences of a particular decision?
2) If not, would additional supports and/or accommodations enable the person to satisfy (1) above? Have the supports been put in place to assist this person to understand and appreciate the nature and consequences of his or her intention and to engage and communicate in this decision-making process?
3) If not, can at least one other person who has personal knowledge of the individual reasonably ascribe to his or her actions: personal intention or will; memory; coherence of the person’s identity through time; and communicative abilities to that effect?
4) Are other parties to this decision reasonably accommodating the person?
5) Has the State provided sufficient supports to maximize the person’s decision-making capability?
9. Duty to Accommodate
One of the main elements of the framework proposed in this paper is a legislated duty to accommodate. Without reasonable accommodations by other parties in the decision-making process, individuals will not be able to turn their unique decision-making abilities into real capabilities to make decisions and enter agreements with others.
Both the government and third parties have duties to ensure supports and reasonable accommodations to assist people with disabilities in maximizing exercise and enjoyment of their legal capacity. These duties should be exercised interdependently, according to the following principles:
1) People with a disability have a right to supports – to assist in development, participation in community life, to enable access and to exercise legal capacity.
2) Third parties have a duty to accommodate people with disabilities in transactions and decision-making processes. This means that third parties must:
a) accommodate whatever supports a person brings into the decision-making process; and
b) must provide additional supports, to the point of undue hardship, to enable the person to exercise legal capacity in a manner that maximizes their autonomy.
3) Assessment of needed supports and accommodations should be decision and individual specific, and cannot be based on disability status. The focus of the assessment is to determine what supports the individual requires to make their own decisions – either independently or with the support of others.
4) Where additional supports are required in order to maximize the exercise and enjoyment of legal capacity beyond what the person brings to the transaction or decision-making process, and beyond what a third party can reasonably provide as an accommodation, governments have an obligation in accordance with the CRPD to provide such measures. This obligation should include to:
§ maintain an office dedicated solely to assisting people to access supports;
§ provide information and resources to people with disabilities and third parties outlining the types of supports that may be of benefit along with practical mechanisms for putting the supports into practice;
§ provide funding for supports to people whose decision-making capability is in question and who are in need of supports; and,
§ maintain a registry of planning documents (e.g. representation agreements) which name supporters.
B. Proposed Institutional Framework for Safeguarding Integrity of Decision-making Processes
Safeguards must be designed to protect and respect the integrity of all aspects of decision-making. An institutional framework for safeguarding decision-making processes that enhance, protect and promote an equal right to legal capacity should be based on three guiding principles:
· Respect for autonomy in decision-making;
· Respect for personal dignity;
· Safety and the duty to protect.
Eight main features are proposed to safeguard the integrity of decision-making processes:
1. Legislated Framework for Legal Capacity and Decision-making Supports
The CRPD recognizes a right to legal capacity, and the obligation of States Parties to ensure supports are available to exercise legal capacity. Indeed many other Articles in the CRPD reference State Parties’ obligations to provide for needed supports to realize recognized rights. A legislative framework outlining supports and services benefits would give full effect to these obligations.
Ideally, a legislative framework would mandate provision of supports needed for people to exercise legal capacity, and would provide for the institutional framework outlined in this section. A legislative mandate for these supports would also give effect to the interdependence we outline in the previous section between third party duties to accommodate in decision-making processes, and the role of governments to make reasonable efforts in providing supports beyond the point of undue hardship to these parties. In the Canadian context, such legislation would likely fall primarily within the powers of provincial and territorial governments.
2. Legislated Duties of Representatives and Facilitators
Essential duties include to:
Act diligently, honestly and in good faith;
Act in accordance with all applicable legislation;
Act in accordance with any relevant agreements or Administrative Tribunal orders;
Keep information about the adult, and his/her affairs, confidential;
Keep records in relation to all aspects of their role; and,
Involve supportive family members and friends.
Representatives and facilitators who comply with the above duties would not be liable for any injury death, loss or damage that results from actions they have taken in their role as representatives or facilitators.
Monitors should be appointed to protect the decision-making rights of the adult where a supported decision-making representative or facilitator is involved. Monitors must ensure that the representative or facilitator complies with all legal duties expected of them. If the monitor finds wrongdoing, attempts to resolve it with the representative/facilitator and the person should be made. If these efforts fail, resort should be had to the Administrative Tribunal for adjudication.
4. Community-Based Resource Centre
A community based resource centre must be established in legislation, with an arms-length, independent status and a board of directors, a majority of whom are people with disabilities. It would provide information and assistance to individuals with disabilities, support representatives, facilitators and third parties in developing and accessing needed supports and accommodations for decision making processes. The centre would maintain a registration system of representation agreements, monitors and facilitators.
5. Legal Capacity and Support Office
This Office would be required to investigate allegations of serious adverse effects as well as act as a facilitator or monitor of last resort. It would arrange for needed supports to address situations where serious adverse effects are occurring or may occur.
6. Administrative Tribunal with a Focus Exclusively on Decision-Making
The role of the Administrative Tribunal would be to have exclusive jurisdiction over decision-making cases. The Tribunal could give direction on any question related to a person’s decision-making status, or role of other persons in relation to that status, including where questions or issues relate to:
· Duty to accommodate;
· State provision of supports;
· Decision-making status;
· Appointment of supporters and facilitators and the approval of people applying to act as supporters;
· Appointment of monitors – where the Administrative Tribunal determines that supporters or facilitators are not meeting their legal obligations, it would have authority to appoint monitors.
7. Access to Legal Counsel
People who wish to take cases to the Tribunal related to decision-making supports, accommodations or status should have access to state funding for legal counsel, should an individual be unable to pay.
8. Formal Advocate
Independent advocacy should be established to:
· Provide advice in relation to decision-making statuses that may be of relevance to the person;
· Provide information to people in relation to legal processes and options where there is a capacity issue;
· Explain to an individual who is the subject of a capacity proceeding the nature and implications of the proceeding, including explaining the significance of any possible orders or consequences;
· Support individuals who are in the supported or facilitated status, including assisting the person to address neglect and abuse by the representative or facilitator.
C. Safeguards to Ensure Appropriate Decision-making Status is Recognized, Accommodated and Supported
There is substantial risk that a person could be inappropriately placed in a particular decision-making status because of lack of access to supports and reasonable accommodation. Given that this would unnecessarily restrict a person in exercising their legal capacity, the following safeguards are proposed:
1) Any status determination must begin with a presumption of legal independence as defined above. Where a party seeks to rebut this presumption, inquiry must be made into whether third parties and governments have met their obligations to provide reasonable accommodations and supports to assist a person in exercising their legal capacity.
2) If the Tribunal is not satisfied that reasonable accommodations and efforts have been made by third parties and governments, then it would order remedies to that effect; and require implementation and assessment of those remedies prior to making a determination that the person cannot act legally independently.
3) If there is reasonable evidence to rebut the presumption of legal independence, and the Tribunal is satisfied that reasonable accommodation and effort has been made by third parties and governments to provide supports for decision making in a legally independent status, a presumption exists that the person meets the criterion for supported decision-making status as defined above.
4) If the Tribunal makes a finding that a person cannot act in a legally independent status, it shall not determine that the person is in a facilitated status unless it is satisfied that:
o no reasonable accommodations and support arrangements could currently be established that would enable a person to meet the minimum threshold for supported decision making; and
o that the person would benefit from having decisions made through a facilitated status.
5) If the Tribunal is not satisfied that reasonable accommodations and supports have been provided, then it would order remedies to that effect, as above, and not make a determination that a person can only act through a facilitated status until their efficacy was assessed.
6) Status determinations must afford the person being assessed the opportunity to involve their supports in any manner and to any extent necessary to accommodate his/her ability to participate in the assessment. The right to access supports in this manner was articulated in Koch (Re).
7) Status determinations must afford a person the right to have a lawyer present at the assessment, and be advised of that right.
8) Prior to undertaking a status determination, the person must be advised of the purpose of the assessment, the significance and effect of a status finding, and depending on the circumstances, the person’s right to refuse to be assessed (see, for example, Ontario’s Substitute Decisions Act, s. 78(2)).
9) Objective and disability-sensitive guidelines must be created and legislatively entrenched with which all status assessments must comply.
10) Upon the determination that a person should be placed in a facilitated status, the State has an obligation to invest in supports that assist the person to develop personal support relationships sufficient to act in a supported decision-making or legally independent status at some point in the future. Periodic reviews must be established to determine whether adequate investment is being made in developing such relationships, and whether a person should remain in a facilitated status.
D. Safeguards Where Decisions Fundamentally Affect Personal Integrity
Some decisions raise particular risk of abuse and exploitation because they so fundamentally affect personal integrity, including: non-therapeutic sterilization, non-therapeutic abortion, cochlear implant surgery, non-therapeutic plastic surgery, sex re-assignment surgery, assisted suicide (in jurisdictions that provide for this), etc.
We propose the following guidelines with respect to these types of decisions:
1) People exercising their legal capacity through a legally independent decision-making status should not be restricted in any way from making decisions which are allowable under law, even if people require supports and accommodations to do so.
2) Where people who exercise their legal capacity through a supported decision-making status wish to consider these types of decisions, the decisions should be reviewed by the Administrative Tribunal, given the risks for exploitation and abuse. The Tribunal must be confident that persons making high risk decisions that significantly affect personal integrity are making them with free and informed consent even if with the assistance of a supported decision-making representative. Monitors could review such decisions in an effort to determine whether the individual’s intention is accurately being interpreted and expressed by the representative.
3) Because of the risks of misinterpretation of a person’s will and/or intention for those who exercise their legal capacity through facilitated decision-making, decisions that substantially affect personal integrity like those listed above, should never be legally permitted to be facilitated for persons in this decision-making status.
E. Safeguarding Against Serious Adverse Effects
We propose a definition of serious adverse effects as follows:
A situation of serious adverse effects occurs when a person, as a result of his/her actions or those of others,:
a) Experiences loss of a significant part of a person’s property, or a person’s failure to provide necessities of life for himself or herself or for dependants; or
b) Experiences serious illness or injury, and deprivation of liberty or personal security; or
c) Has threatened or attempted or is threatening or attempting to cause physical and/or psychological harm to himself or herself; or
d) Has behaved or is behaving violently towards another person or has caused or is causing another person to fear physical and/or psychological harm from him or her.
Serious adverse effects can attach to the individual in question as well as to others who are directly involved in the situation. In addressing serious adverse effects, the following roles would be required:
1. Role of the Legal Capacity and Support Office
The Legal Capacity and Support office would be authorized to investigate allegations of serious adverse effects in situations where individuals are in a supported or facilitated decision-making status, or where there are reasonable grounds to indicate that a person is unable to act legally independently. The assessment and provision of supports would address two forms: community resources and decision-making supports.
2. Role of the Administrative Tribunal
The Administrative Tribunal, upon recommendations from the Legal Capacity and Support Office, would make determinations about an individual’s decision-making status and authorize accommodations and/or state provision of needed supports. Legal counsel and independent advocates would be made available to those whose cases are investigated by the Legal Capacity and Support Office and/or brought before the Tribunal.
3. Role of a Monitor
The monitor would be legally required to make inquiries into whether or not, and the extent to which, representatives and facilitators are acting appropriately in the face of serious adverse effects.
F. Protocol for Responding to Allegations of Serious Adverse Effects
For cases of suspected serious adverse effects the following protocol is proposed for the Legal Capacity and Support Office to follow:
1) Determine whether serious adverse effects are actually occurring, and if so which types; whether or not the person is able to act legally independently, with supports as needed, or whether they can act only through either a supported or facilitated decision-making status in relation to a particular decision or set of decisions; and what interventions (i.e. supports and safeguards) are required to address the situation.
2) Determine whether a medical emergency and/or criminal behavior is involved, and make referrals as needed, to emergency services or to the police. Where the Office is of the opinion that the possible criminal conduct is a result of lack of needed supports, it may take advantage of other options before referring the matter on to the police.
3) Where a finding of serious adverse effects is made, findings and recommendations would be presented to the Administrative Tribunal where: there is a dispute about a person’s decision-making status; or the Office believes that action is required but does not have the necessary resources or jurisdiction.
4) For those in a legally independent status, if it is determined that the person is able to act legally independently with or without any additional decision-making supports, the Legal Capacity and Support Office would offer an assessment of needs and supports to the individual and others involved. The Community-based Resource Centre would be engaged as required. If the offer were refused, the Office may, based on its own assessment of risk, initiate periodic contact with those involved to offer support and assistance. A person acting through a legally independent status cannot be involuntarily committed to a psychiatric facility for psychiatric assessment or treatment.
5) For those in a supported decision-making status, once the Legal Capacity and Support Office determines that there are serious adverse effects, and that it is not a medical emergency, it may find that: a) the individual already has supported decision-making arrangements in place; or b) the individual is not able to act legally independently; and/or c) that the individual requires support representatives but no such persons are available to play this role. In situations related to either (b) or (c), the Office would apply to the Tribunal for an order relating to establishing representational supports.
· The Office determines whether the support representatives are meeting their fiduciary responsibility. If not, the Office could require supports be provided to the representatives and arrange with the community resource centre for this purpose; recommend to the Tribunal that support representatives be replaced; and/or request the Tribunal to appoint a representative including, as a last resort, the Office itself. Where the Office determines that supporters are meeting their fiduciary responsibilities, and an assessment of need for supports is refused by both the individual and support representatives, the Office may initiate periodic contact with those involved to offer support and assistance.
· Once a determination is made of serious adverse effects, the Office may involve any appointed monitor in the investigation, arrange for appointment of a monitor, and/or question whether the monitor is fulfilling his/her duties.
· A person acting through a supported decision-making status cannot be involuntarily committed to a psychiatric facility for psychiatric assessment or treatment.
6) For those in a facilitated decision-making status, a facilitator should not be able to consent on a person’s behalf to have them placed, or remain, in a situation of serious adverse effects. Some dignity of risk should be available to the person as the facilitator begins to discern their will and/or intentions, or has prior knowledge of the person’s wishes with respect to the risks they wish to assume.
· Once the Legal Capacity and Support Office determines that there are serious adverse effects, and that it is not a medical emergency, and that the person is in a facilitated decision-making status, the Office determines if the facilitator is meeting his/her fiduciary responsibility. If not, the Office can require supports be provided to the facilitator to assist them in meeting their responsibilities, or recommend to the Tribunal that the facilitator be replaced. If no other facilitator is available, the Office may seek to be appointed by the Administrative Tribunal as facilitator of last resort.
· At any time, the Office may undertake an assessment related to needs for decision-making supports and other community resources, and make arrangements for supports as needed. Unlike the other two statuses, the facilitator cannot refuse the assessment of needs, given the vulnerability of the individual in this status.
· The Office may involve any appointed monitor in the investigation, and/or question whether the monitor is fulfilling his/her duties.
· The facilitator may seek to admit a person to a medical or psychiatric facility for assessment and/or treatment. A physician cannot admit a person to a facility for this purpose, but the Office, Tribunal or facilitator can request a recommendation from a physician in this regard. If the individual resists the admission, they have a right to a Tribunal hearing to make a determination as to their status and/or the legitimacy of the facilitator’s decision.
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