In this and the next two sections we highlight a number of risks that a legal, policy and practice framework to support the exercise of legal capacity must account for. We suggest that an institutional framework for safeguarding decision-making processes that enhances, protects and promotes 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
The CRPD recognition of the right to legal capacity without discrimination on the basis of disability requires a re-balancing of these principles in the direction of maximizing autonomy, and preventing the traditionally paternalistic approaches towards people with disabilities and older adults in the name of safety and protection. Safeguards are necessary to promote the integrity and utility of each of the decision-making statuses to ensure that people are not unnecessarily denied a decision-making status that would more effectively enable them to enjoy and exercise their legal capacity. Moreover, there may be a particularly high risk of abuse when the person has a disability or is an older adult as isolation and/or limited financial and other resources often come into play with these groups.
Safeguards must be designed to protect and respect the integrity of all aspects of decision-making. They must also take into account the overarching principles which guide our framework, being respect for autonomy, respect for personal dignity and protection against abuse and neglect. In order to promote and protect legal capacity without discrimination on the basis of disability, there are four main areas to be safeguarded:
· Safeguarding the integrity of the decision-making process
· Safeguards to ensure appropriate decision-making status is recognized, accommodated and supported
· Safeguards where decisions fundamentally affect personal integrity
· Safeguarding against serious adverse effects, including neglect and abuse
In this section we address the first three areas of safeguards. Given the particular complexity of safeguarding against serious adverse effects and at the same time respecting the right to legal capacity without discrimination, we devote the next section to this area on its own.
A. Proposed Institutional Framework for Safeguarding Integrity of Decision-making Processes
We propose eight main features of a system to safeguard the integrity of decision-making processes that maximize exercise and enjoyment of the right to legal capacity without discrimination on the basis of disability:
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 and Liability of Representatives and Facilitators
Representatives and facilitators are in a fiduciary relationship with the person. Essential duties of representatives and facilitators include:
Act diligently, honestly and in good faith;
Act in accordance with all applicable legislation and any Administrative Tribunal orders;
Act in accordance with any relevant agreements;
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.
In the British Columbia Representation Agreement Act representatives who comply with the legislated duties would not be liable “for injury to or death of the adult or for loss or damage to the adult’s financial affairs, business or assets. We recommend comparable but more expansive protections and recommend the following language:
Representatives and facilitators who comply with all legislated 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.
A monitor is a person whose role would be to protect the decision-making rights of the adult and oversee the work of the representative or facilitator. More specifically, monitors must ensure that the representative or facilitator complies with all legal duties expected of them. They can be appointed by the one who creates the role of representative/facilitator. This will usually be either the person whose decision-making status is affected or the Administrative Tribunal (outlined below).
Monitors should be required to make reasonable efforts to determine whether the representative or facilitator is complying with their legal duties. Monitors may require the representative or facilitator to produce accounts and records. If the monitor finds wrongdoing, either intentional or not, he/she should make all attempts to resolve it with the representative/facilitator and the person. However, if these efforts fail, resort should be had to the Administrative Tribunal, whose job it will be to adjudicate such disputes.
The monitor role could be modeled after that created in British Columbia’s Representation Agreement Act, with necessary modifications, taking into account the successes and limitations of that system.
4. Community-based Resource Centre
People whose decision-making status is in issue, as well as third parties with whom they interact, require a resource to provide information and assistance with the practicalities of the accommodation process and accessing of supports. To this end, a community based resource centre must be established in legislation. It should be government funded but at arm’s length, and run by a board of directors, the majority of whom are people with disabilities. The Nidus Personal Planning Resource Centre and Registry in British Columbia is an example of such a resource centre. However, its role and impact are limited by the absence of legislative authority for its existence.
An important role for the Resource Centre would be to create and maintain a registration system. The system would keep track of every supported and facilitated decision-making arrangement in existence, including names of representatives, facilitators and monitors. This allows third parties to satisfy themselves that people who are acting as representatives or facilitators, prima facie, have legitimate authority to do so.
Examples of registration systems are:
· Nidus Personal Planning Resource Centre and Registry in British Columbia operates a centralized registry for representation agreements and enduring powers of attorney (www.nidus.ca); and
· Registration systems in Quebec. There are two types of Quebec mandates (planning documents). “Notarized mandates” are registered with the Chambre des notaries (http://www.cdnq.org) and registration of “mandates before witnesses” is done with the Barreau du Quebec’s Registre des mandats.
5. Legal Capacity and Support Office
It is not an uncommon experience for people with disabilities and older adults to experience isolation and abuse. A Legal Capacity and Support Office must exist to address these concerns. It would have a dual role, not dissimilar to some roles of Ontario’s Public Guardian and Trustee. It would be required to investigate allegations of serious adverse effects as defined in Section VI.A below as well as act as a facilitator or monitor of last resort. Each of these roles would be undertaken in conjunction with appropriate input and direction from the Administrative Tribunal. One role of the Legal Capacity and Support Office will be to arrange for supports as needed to address situations where serious adverse effects are occurring or may occur and there is reason to believe that a person’s ability to make and/or act on their decisions will be enhanced by such supports.
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 were raised related to:
· Duty to accommodate;
· State provision of supports;
· Decision-making status;
· The appointment of supporters and facilitators – the Administrative Tribunal would have authority to appoint supporters and facilitators, adjudicate any conflicts about whether one or more persons should be appointed in this capacity instead of others, and hear any matter to informal appointment of supporters;
· The appointment of monitors – where the Administrative Tribunal determines that supporters or facilitators are not meeting their legal obligations, it should have the power to appoint monitors;
· Applications to approve and recognize people wishing to act as supporters;
· Decisions fundamentally affecting people’s personal integrity (for people in the supported status).
In summary, the Administrative Tribunal would adjudicate in disputes over what type of support is required; whether reasonable accommodations have in fact been made; and the status through which a person should be empowered to exercise their legal capacity. As well, it would be empowered to make judgments in cases where representational support is required to exercise legal capacity, and there is dispute over who will provide that representational support if the person is not able to indicate a choice in ways that others understand. The extent to which an Administrative Tribunal, in the context of administrative law in Canada, could compel private entities as well as the government to provide accommodations and/or supports requires further analysis. The scope of its mandate would likely need to be laid out in a related statute.
While some of the concerns the Tribunal would be mandated to address may be pursued by launching human rights complaints/applications or pursuing remedies for Charter violations in court, the Tribunal would provide for a more comprehensive remedial scheme specifically tailored to the decision-making context. Human rights and Charter remedies can be time consuming and expensive to pursue. Decisions about the most fundamental aspects of people’s lives cannot be held up waiting for processes and decisions by slow moving court and tribunal processes. This is particularly so because litigation involving people whose capacity is in question has its own unique complexities.
Any remedial process, like that provided by an Administrative Tribunal, must take into account the inevitable barriers that people with intellectual, cognitive and/or psychosocial disabilities experience in pursuing legal avenues. A host of barriers have been documented in relation to both courts and administrative tribunals. These include difficulty understanding court/tribunal processes, lack of accommodation during the hearing and having the very right of their participation challenged on the basis of alleged incapacity.
For example, access to remedies for a breach of the duty to accommodate in the decision-making process must not pose a further barrier for people with disabilities to make their own decisions. A remedial process must be established which does not require the person with the disability to expend an inordinate amount of time or money to prove his/her right to make his/her own decisions. There must be an expeditious, fair and accessible method of adjudicating and resolving disputes about supports. This must require that a dispute resolution mechanism (e.g. adjudicative hearing or mediation) be activated almost immediately. Ontario’s Consent and Capacity Board adjudicates consent and capacity issues and should be explored to determine the applicability of its model.
The Administrative Tribunal would be legislatively created. Because the cases in the Administrative Tribunal’s mandate impact upon the core values of liberty and autonomy, its decisions must be reviewable. The Tribunal should approach cases in a manner that maximizes an individual’s legal capacity. For example, if there is concern about supporters or facilitators breaching their fiduciary duties, an initial approach might be to require relationship-building supports to strengthen the supported decision-making relationship. However, if there is an intentional breach of fiduciary duties, an alternative support arrangement is required. Thus, the Administrative Tribunal would have to have a wide degree of latitude to deal with each case on its own facts with a goal to promoting autonomy as much as possible. This relies on highly skilled and knowledgeable tribunal members, who have training in capacity issues and experience with people with disabilities and older adults.
Mediation is often an effective dispute resolution mechanism. It is more informal and expeditious than a tribunal process. It has the potential to more effectively preserve existing relationships between the person and representatives/facilitators. These relationships are often built on trust and close personal relationships, and every effort should be made to encourage and support them. Thus, mandatory mediation should be part of the Administrative Tribunal process.
7. Access to Legal Counsel
Any decision-making status other than that of being legally independent necessitates the involvement of other people in an individual’s life, people whose actions can have a significant impact on their lives. While the Administrative Tribunal described above is a necessary safeguard, the safeguard is only of significance to the extent that it is used. As the Administrative Tribunal is a legal forum, people whose decision-making status is in issue should have access to that forum; access must not be impeded by their inability to access and/or pay for a lawyer. Thus, state funding must be available to hire a lawyer, should an individual be unable to pay.
8. Formal Advocate
Independent advocacy is an important aspect of an individual’s right to make their own decisions. In general, advocates can assist the individual in expressing their wishes and inform other parties of the individual’s rights, and of their corresponding duties. The roles played by the advocate could include the following:
· Provide advice in relation to decision-making statuses that may be of relevance to the person;
· Provide information to an individual 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.
B. Safeguards to Ensure Appropriate Decision-making Status is Recognized, Accommodated and Supported
There may be times when parties in a decision-making process disagree about the decision-making status through which a person should exercise their legal capacity. For example, a person with an intellectual disability may wish to make a health care decision on his or her own – i.e. to act legally independently in this decision. The physician may believe the person is unable to do so and that he/she requires representational support and a supported decision-making status. However, the person and his/her advocate may believe the person requires only interpretive assistance and plainer language about the procedure in question.
A person should have access to necessary appeal processes for this determination, because what is at stake is their right to act legally independently – without support from others in a representational role. The defense of other parties in such appeal processes may be that they have provided reasonable accommodations and are still not satisfied that the person, on his or her own, is able to understand and appreciate the consequences of the decision; and that representational supports are required. This may raise questions of whether the government has fulfilled its responsibility to provide supports for decision-making beyond the point of undue hardship on the part of the third party.
There are likely to be other challenging situations which call for a determination of a person’s decision-making status, for example, where a person’s actions and communication indicate intentional behaviour which places the individual and/or others at substantial risk of harm. If others are seeking to have a person designated in a facilitated status because they believe the person’s behavior is in conflict with his or her own will, intentions or other expressed desires, the safeguards outlined below will be particularly important to follow. The challenge here is whether it can be reasonably claimed that a person’s actions and intentions are in conflict with what others know about their will as it has been demonstrated in the past.
Where there are disputes about the decision-making status through which a person will exercise their legal capacity, the Legal Capacity and Support Office must provide timely and accessible information, mediation and dispute resolution mechanisms. Where these are not satisfactory to resolve the dispute, parties may take their disputes to the Administrative Tribunal. The Tribunal should be mandated to make determinations about decision-making status, and related reasonable accommodations and supports required. Individuals must be provided legal counsel and any other needed supports in order to access and participate in these processes.
In making status determinations, especially about whether someone should be in a facilitated status, the Administrative Tribunal must adhere to strict safeguards to protect against erroneous or discriminatory allocation of this status. Safeguards should include the following:
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.
C. Safeguards Where Decisions Fundamentally Affect Personal Integrity
Some decisions are considered by people with disabilities, their families and/or advocates to raise particular risk of abuse and exploitation because they so fundamentally affect personal integrity. Such decisions may include 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. The list of these types of decisions is not fixed, and certainly evolves over time.
Should people with disabilities who exercise their legal capacity through other types of decision-making status than legally independent status, be denied the opportunity to make these decisions? Is the risk of exploitation too high? The opportunity to make these decisions should not, by definition, be excluded from people with disabilities who make them by a supported status. However, where people exercising their capacity through this 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 what are considered 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. For these types of decisions, in a supported status, monitors, too, play an important safeguarding role. Monitors appointed as part of the creation of a support mechanism could review such decisions in an effort to determine whether the individual’s intention is accurately being interpreted and expressed by the representative.
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.
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