X. Education and Information: Understanding Rights and Responsibilities

////X. Education and Information: Understanding Rights and Responsibilities
X. Education and Information: Understanding Rights and Responsibilities2017-03-09T18:44:03+00:00

A. INTRODUCTION AND BACKGROUND

During the LCO’s consultations, all stakeholders pointed to shortcomings in understandings of the law and in the skills necessary to apply it as key issues to be addressed in any review. The need for improvements in education and information has therefore been a theme throughout this project, and arises in every Chapter of this Report. This Chapter does not attempt to replicate this material, but to provide a focussed examination of some key elements).

It should be noted that, despite its importance, the provision of information and education is not a panacea for every issue affecting this area of the law. Nor is information the same thing as advice, and on its own does not create the ability to act on it. Nor can education and information themselves create solutions to difficult situations: they can only assist in identifying and accessing what is available.

B. CURRENT ONTARIO LAW AND PRACTICE

1. Understanding Needs for Education and Information

In considering reforms to promote better understanding (and therefore better implementation) of the law, the needs of four groups must be taken into account.

Persons directly affected by the law will be the most profoundly affected by the quality and extent of the information they receive about the law. The information that they receive will substantially shape their ability to make meaningful choices in this context and to protect and enforce their rights. Except for those persons granting powers of attorney who have sophistication in handling affairs or easy access to professional assistance, this is also the group that will likely have the most challenges in receiving adequate information, or even in realizing that they could benefit from information. The conditions affecting their legal capacity will affect their ability to understand and appreciate information about the law itself. Many persons directly affected by the law will require accommodations or supports in receiving or accessing information. As well, they will very often encounter the law at a time of crisis, when it is difficult to seek out and process information.

Persons who act as substitutes or supporters will, for the most part, be family members or friends with no particular expertise in understanding or applying the law. Many will also be acting as caregivers, and in most cases, they will not be paid for their activities. In their roles, they will be often required to navigate extensive processes or intimidating institutions, understand novel medical or financial concepts, develop skills as advocates, and manage difficult family or professional relationships. In the LCO’s consultations, these family members often emphasized the challenges of their roles, and the lack of supports available to them.

The employees of third parties such as banks, trust companies, community agencies or many government departments are unlikely to have specialized expertise in this area. Large organizations, such as financial institutions or hospitals, will generally develop internal expertise, perhaps including policies, protocols or guidelines. Smaller organizations may not have the ability to develop these kinds of internal resources. It is important to emphasize that third parties are, by and large, well-intentioned in their efforts to serve their clients, and that they may be operating in contexts of considerable constraint and difficulty. There may be no simple solutions to the ethical, practical or resource challenges that these institutions or professionals may face in providing services to what may at times be their most vulnerable clients, although opportunities do exist to deepen provider competencies in this area through existing institutions and programs.

Professionals who must apply or provide advice on the law as part of their professional duties have the most significant responsibility for ensuring the effective and appropriate implementation of the law. This group includes the professionals who carry out the different forms of assessment of capacity; lawyers who assist with the preparation of powers of attorney or with resolving disputes arising under the law; and hospital or long-term care home staff who develop internal policies and procedures for addressing these issues.

2. Some Legislative History: The Advocacy Act Requirements

When the current legislative scheme was initially proposed, it contained three statutes: the Substitute Decisions Act, 1992 (SDA), the Consent to Treatment Act, 1992 (the predecessor to the Health Care Consent Act, 1992) and the Advocacy Act.

• The Advocacy Act is described at length in the Discussion Paper, Part Four, Ch III.B.

For the purposes of this discussion, it suffices to note that the Advocacy Act and the accompanying provisions in the SDA and Consent to Treatment Act made extensive provision for rights advice. At key transition points in the lives of persons affected by the law where important rights were at stake, advocates were made responsible for and otherwise interacting with the individual in various ways, including the following:

• notifying the individual of the decision or determination that had been made about her or him;

• explaining the significance of the decision or determination in a way that took into account the special needs of that person;

• explaining the rights that the individual had in that circumstance, such as a right to appeal the decision or determination; and

• in some cases, ascertaining the wishes of the individual (e.g., whether he or she wished to challenge the decision or determination) and to convey those wishes to the appropriate body (e.g., the Public Guardian and Trustee).

Action on these decisions or determinations could not be taken until the advocate had carried out these duties, or had made efforts to do so and had been prevented, for example by contravention of their rights of entry. This role was engaged in the following situations, among others:

• the appointment of a statutory guardian of property following an examination under the Mental Health Act;

• the appointment of the Public Guardian and Trustee (PGT) as a temporary guardian following an investigation into serious adverse effects;

• applications for validation or registration of powers of attorney for personal care;

• applications for court-appointed guardianships;

• court orders for assessment of capacity, including orders for apprehension of the individual to enforce assessments;

• findings of incapacity with respect to treatment made within a psychiatric facility;

• findings of incapacity with respect to “controlled acts” in a non-psychiatric facility;

• applications to the Consent and Capacity Board (CCB) for directions regarding the prior expressed wishes of an individual; and

• applications to the CCB for permission to depart from the prior expressed wishes of an individual.

These requirements were removed in 1996, when the Advocacy Act was repealed and the Consent to Treatment Act, 1992 replaced by the current Health Care Consent Act, 1996 (HCCA). While the current legislation contains some provisions related to the provision of information (as is described below), they are minimal compared to the original legislative requirements.

3. Current Statutory Requirements

Currently, the SDA, Part III of the Mental Health Act (MHA) and the HCCA include the following requirements for information to be provided to affected individuals at a limited number of key transition points.

Assessing Capacity: Because an assessment of capacity can in a number of circumstances have very significant automatic effects on the individual’s status and choices, information about the legal effect of the assessment, the rights of the individual and the options available is crucial.

• The provision of rights advice and rights information in these circumstances was discussed at length in Chapter 5.

MHA examinations of capacity to manage property: those undergoing these examinations have a right to notice of the issuance of a certificate of incapacity, and to timely provision of rights advice by a specialized Rights Adviser. The Rights Adviser will provide information to the patient about the significance of the certificate and the right of appeal.

HCCA assessments of capacity to consent to treatment: a finding of lack of capacity must be communicated to the individual. Outside of psychiatric facilities, the form and content of the notice depends on the guidelines of the health regulatory college.

HCCA evaluations of capacity to consent to admission to long-term care or to personal assistance services: the HCCA does not require provision of information to the affected individual; however, the form for evaluators includes an information sheet that must be provided to the individual and a box to tick that the individual has been informed about the finding and the right to appeal.

SDA Assessments by designated Capacity Assessors: the individual must be provided with information about the purpose, significance and potential effect of the assessment, as well as written notice of the findings of the assessment. Where a statutory guardianship results, the PGT must inform the individual that it has become the guardian and that there is a right to apply for review of the finding.

The significant shortfalls in the rights information regime under the HCCA were discussed at length in Chapter 5, and are the subject of several recommendations for reform. It is also worth noting that even where information is provided to individuals, they may face many barriers to acting on that information without further assistance, whether because of disabilities or impairments, a lack of supports or the constraints of their environments.

Roles and responsibilities of Substitute Decision-makers (SDMs): the SDA currently includes several provisions that promote information about rights and assistance. For example, the SDA requires SDMs appointed either through a power of attorney (POA) or a guardianship, to explain their powers and duties to the affected individual. Section 70 of the SDA requires a proposed guardian in a court application for guardianship to include in the application a signed statement either that the person alleged to be incapable has been informed of the nature of the application and the right to oppose it, or explaining why this was not possible. Sections 32(2) and 66(2) require SDMs under the SDA to explain to the individual the powers and duties of the guardian (although not, notably, any means of rights enforcement for the individual).

It is important to note, however, that these provisions are limited: For example, there is no formal mechanism for ensuring that the duties under sections 32(2) and 66(2) are carried out. Nor does the SDA include formal requirements or supports to inform or educate SDMs, or third parties. Persons appointed under a POA need not even be informed that they have been appointed, and there are no mechanisms for ensuring that attorneys understand their role.

4. Non-statutory Provision of Education and Information

There has been considerable effort by a variety of institutions to provide affected individuals, family members and SDMs, professionals and third parties with the information required for the effective functioning of this area of the law.

Educational institutions: Many of the service providers or professionals charged with advising on, applying or supporting the application of the law must meet certain educational requirements prior to entering their professions. This is true for social workers, health professionals and lawyers, for example. Educational institutions may provide information related to this area of the law, either as mandatory or voluntary course material.

Professional regulatory bodies: Professional regulatory bodies play an important role in providing information and education to their members across a wide range of subject areas. Professional regulatory bodies, such as the health regulatory colleges or the Law Society of Upper Canada, may require practitioners to demonstrate specific knowledge or skills to join the profession, and may provide ongoing education and training opportunities. They may develop policies and guidelines of practice that are binding on their members and may be the subject of complaints where there is non- compliance.

Employing institutions: For professionals working in large institutions, such as hospitals, long-term care homes, Community Care Access Centres, or large social service agencies, their implementation of the law will be significantly shaped by their employer. Institutions may develop internal policies dictating how the law is to be interpreted and applied, create internal training programs or resources, or provide access to information and advice through internal legal or ethics departments.

Government mandated training and education: Government does not legislatively or otherwise mandate training or education except in very limited circumstances. The current statutory regime requires those carrying out the various forms of formal capacity assessments to be members of specified professions, and thereby to have completed the requisite education and met accreditation standards. Capacity Assessors who are designated under the SDA, must also complete certain training and requirements to maintain qualification, as is described in Chapter 5 of this Final Report.

Professional associations: Professional associations may also provide materials or continuing education opportunities. For example, the Canadian Medical Association’s Concerns regarding education, information and understanding of the law were prominent in all focus groups, as well as in most of the written submissions that the LCO received.

Code of Ethics includes provisions related to respecting the right to accept or reject treatment, ascertaining wishes and provision of information to patients. The Ontario Bar Association’s Trusts and Estates Section regularly provides Continuing Professional Development related to powers of attorney, as does the Health Law Section with respect to capacity and consent.

Government bodies: The Consent and Capacity Board (CCB), the Ontario Seniors Secretariat, and the Public Guardian and Trustee (PGT) provide informational materials and conduct presentations aimed both at professionals and institutions, and at families and those directly affected. Both the PGT and the Capacity Assessment Office (CAO) receive thousands of phone calls each year, through which they provide information and referral to appropriate resources.

Advocacy and consumer organizations: Organizations that work with and advocate for persons directly affected may develop education and training for professionals, as part of initiatives aimed at closing the implementation gap and promoting the rights of the individuals that they serve, as well as providing information materials and advice to those directly affected. For example, ARCH Disability Law Centre, the Advocacy Centre for the Elderly and Elder Abuse Ontario regularly engage in public education activities in this area.

Academics and experts: Academics and experts may use their skills to develop tools for “knowledge translation”, aiming to turn complex issues of law and professional practice into practical tools or resources. For example, the National Initiative for the Care of the Elderly (NICE) has as its goals to help close the gap between evidence- based research and actual practice; improve the training of existing practitioners and geriatric educational curricula; interest new students in specializing in geriatric care; and effect positive policy changes for the care of older adults.564

C. AREAS OF CONCERN

Concerns regarding education, information and understanding of the law were prominent in all focus groups, as well as in most of the written submissions that the LCO received. In fact, widespread confusion regarding the law among family members, individuals directly affected and many service providers was evident in the focus group discussions.

It is useful to note that similar concerns were raised in the LCO’s project on Capacity and Legal Representation for the Federal RDSP. The LCO there identified that the provision of information in accessible formats, languages and locations would be crucial to the success of any streamlined process, and recommended that Government of Ontario distribute public legal education to potential users of the recommended streamlined process, in a variety of accessible languages and formats.565

Individuals Directly Affected

I think it’s important [if you] give people the ability to take away people’s rights then you have to have the mechanism in place for people to inform them when it happens. And right now it is only in our [Schedule 1] facilities and yet their rights are being taken away in group homes and long term care and in the community where they’re not being advised. And if it [rights advice] happens in the [psychiatric] facility and they’re still, you know, somewhat abused, what’s happening in the community? And why aren’t there some people out in the community having their rights respected?

Focus Group, Rights Advisers and Advocates, September 25, 2014

ARCH Disability Law Centre, in its 2014 submission to the LCO, emphasized the importance of providing those directly affected by this area of the law with rights advice, so that they understand the kinds of assistance with which they will be provided, the legal obligations of those providing assistance, their rights, the available mechanisms for dispute resolution, and the safeguards in place to address abuse and misuse of statutory powers.566

As was discussed in Chapter 5, there was considerable and widespread concern that rights information, as required under the HCCA, is provided inconsistently, cursorily, or not at all. The Advocacy Centre for the Elderly commented that “persons found incapable under the HCCA (with the exception of Mental Health Act patients) are rarely advised of this finding and are even more seldom advised of their rights”.567

Ontario legislation does provide clear and strong rights for persons directly affected by legal capacity, decision-making and guardianship law. However, without knowledge of their rights under the law – or even of the fact that they have rights under the law – individuals directly affected are very unlikely to be able to effectively access those rights.

Family Members

Many consultees, in both submissions and focus group discussions, emphasized the lack of understanding and skill among many family members who must deal with this area of the law, and advocated for better education and supports for this group.

Many stakeholders identified a pressing need to provide SDMs with at least basic information on their statutory duties, so that they are able to comply.

[T]he only time an SDM gets any sort of knowledge on what their actual duties as an SDM are is in the cases of community treatment orders where a person’s been made incapable. SDMs actually need to be given an opportunity to know what their responsibilities and rights are under the law because most of them don’t really understand what’s being placed upon them when they are taking on that mantle. So, it might be helpful if they, the SDMs, whether it’s for property or treatment, but SDMs be required to actually speak to a rights adviser or other professional just so that they, that knowledge gap for them is filled in.

Focus Group, Rights Advisers and Advocates, September 25, 2014

In its 2014 submission, the Mental Health Legal Committee (MHLC) commented,

Beyond the prevention of harm to the incapable person, requirements that information and advice be provided to attorneys and guardians before their actions are under scrutiny would be preventative and could result in a net costs savings in government and judicial resources otherwise directed at enforcement.

Similar concerns apply to persons appointed to make treatment or admission to long- term care decisions under the HCCA.

Indeed, the LCO facilitator of the focus groups of family members acting as SDMs observed that they very often lacked even the most rudimentary knowledge of the laws under which they were operating, despite their obvious commitment to the wellbeing of their loved ones. Participants were often unaware of the distinction between a power of attorney and a health care proxy or a guardianship, or even of the difference between a power of attorney and a will. Most were unaware of the obligation to keep accounts, let alone the nuances surrounding the concept of legal capacity, the requirements regarding decision-making practices or the processes for enforcing rights.

LCO Consultation Surveys: Responses of Family Members on Information and Education

Based on self-reports by family members indicating that they assisted a loved one with decision-making needs:

• 42 of 97 respondents indicated that they had received some explanation of their roles when commencing their responsibilities while 55 had not received any explanation.

• 59 of 98 respondents either agreed or strongly agreed that they had a good understanding of their legal role and responsibilities as someone providing assistance with decision-making.

Beyond basic understanding of the law, many spoke of a need, not just for compliance information, but for tools and supports for SDMs that would help them to carry out
their roles. As one Rights Advisor pointed out, “The reality is that SDMs are just plain folks trying to get through the day with a responsibility they’re not trained for, they’re
not prepared for, and without some supports or some advice then it’s a very difficult, emotional if not intellectual duty”. In its submission, the Ontario Brain Injury Association commented, not prepared for, and without some supports or some advice then it’s a very difficult, emotional if not intellectual duty”. In its submission, the Ontario Brain Injury
Association commented,

When the role of a decision-maker is given to the caregiver, the learning curve is immense and daunting. In many instances, the specific roles and responsibilities of a decision-maker are not fully understood, or applied and those caregivers are left to twist in the wind, in most cases alone with no outside guidance or support. Not only do they need to understand their loved one post-injury and how to relate and maintain close relationships, but also to learn how to navigate the health care system.

Due to the tremendous pressures and stress there is a high risk of caregiver burnout which could potentially be managed if the right amounts and types of supports were provided. Respite services, training and education on the role as a decision-maker and how to navigate the system would be extremely helpful. Having training resources or modules for those in a decision-making role would be an essential tool for both unpaid caregivers to have at their disposal and for publicly funded service providers who can support decision-makers initially.568

Should government implement the LCO’s recommendations with respect to supported decision-making, education and information for supporters would be vital. The role of a supporter is potentially even more complex and challenging than that of a substitute decision-maker, and in many cases may require supporters to change deeply embedded practices. As was highlighted in Chapter 4, pilot projects in Israel and Australia emphasized that for this approach to be meaningful and successful, supporters themselves require supports.

Professionals and Other Service Providers

The 2014 MHLC submission also emphasized the importance of providing further education about the roles and responsibilities of attorneys and guardians to both members of the bar and the judiciary. Similar concerns were voiced by other stakeholders.

The other problem with the lawyers is there’s not a lot of education out there on this [mental health and capacity] issue and, you know, to a large degree they have to comply with the panel requirements that Legal Aid has got and for some lawyers, especially lawyers in areas where there’s not a lot of mental health going on, it’s hard for them to do that. So, we don’t want to, you know, we want them to be updated but we don’t really want them to make it so onerous that people don’t want to be on the panel any more.

Focus Group, Rights Advisers and Advocates, September 25, 2014

The need for greater information and education targeted to professionals, including members of health regulatory colleges was emphasized in the submission from the Centre for Addiction and Mental Health.

Capacity, decision making and guardianship legislation spans several Acts and is designed to cover the myriad of circumstances where a person may be incapable of making their own decisions. The complexity of this legislation can make it impractical and inaccessible to those who must use it every day.… Consultations with CAMH clinicians about capacity, decision making and guardianship legislation indicate that there is ongoing confusion and uncertainty about the current law in this area. Therefore, CAMH recommends that the LCO’s final report highlight the overall need for education, training and resources for clinicians, individuals, and their families on capacity, decision making and guardianship legislation. This should be a shared effort of government, universities, professional regulatory bodies and large employment institutions.

ACE, in the commissioned paper jointly completed with Dykeman Dewhirst O’Brien for this project, in its 2014 submission to the LCO, and in a 2016 paper completed by Mary Jane Dykeman and Tara Walton, emphasized concerns about endemic misunderstandings of the requirements of the HCCA regarding capacity and consent among health practitioners, and the connected issue of the widespread use of forms, guides, tools and policies that were not in compliance with Ontario law. A review of a sample of materials from hospitals and long-term care homes by ACE and DDO revealed that many of these documents incorporated significant misunderstandings of the law: for example, several documents incorrectly suggested that SDMs could engage in advance care planning on behalf of individuals lacking legal capacity, and several institutions were using materials from other jurisdictions without adaptations to ensure compliance with Ontario law. This is of particular concern because focus groups with health practitioners indicated that “health care organizations’ forms drive practice”.569

Beyond the specifics of the law, professionals would also benefit from greater practical support and guidance on applying the law in the context of the wide range of needs and individual circumstances that they are likely to encounter. For example, professionals may benefit from support in addressing issues of cultural diversity in the context of legal capacity and decision-making.

And again, should the LCO’s recommendations with respect to supported decision- making and network decision-making be adopted, professionals and service providers would need significant education and information to enable them to appropriately advise on and apply the law.

To sum up, there was very widespread agreement both as to the importance of education and information all those interacting with legal capacity and guardianship law, and as to the inadequacy of current means of imparting education and information, despite the best efforts of a wide range of organizations.

D. APPLYING THE FRAMEWORKS

The LCO’s Framework for the law as it affects persons with disabilities comments,

Many laws are exceedingly complex, so that understanding and navigating them requires considerable effort and expertise, and persons with disabilities may be expected to do so on their own, without supports or appropriate accommodation. Those operating such systems may have an imperfect understanding of the needs and circumstances of persons with disabilities, or may harbor ableist attitudes or assumptions.570

The companion Framework for the law and older adults makes a similar comment. This is certainly a true statement for law regarding legal capacity and decision-making.

The Frameworks directly connect this challenge to the importance of access to information and education, both for those directly affected by the law and for those charged with implementing it. Both Frameworks ask whether “mechanisms have been developed to ensure that [older adults or persons with disabilities] are informed about their rights and responsibilities under the law, and that they have access to the information necessary to seek access to their rights”.

The Frameworks also emphasize the importance of ensuring that information and education is truly accessible to a diverse population and individual needs. Older adults and persons with disabilities may face a range of barriers to accessing information, including a lack of disability-accessible information and heavy reliance on online forms of information. Further, needs for information often arise at a point when individuals are in crisis, and at such times, these individuals will have additional difficulties in navigating complex systems and multi-layered bureaucracies.571

The Frameworks remind us that some groups of older adults or persons with disabilities will find it more difficult than others to access information and education. Many service providers pointed to the additional challenges faced by older persons and persons with disabilities who are newcomers. Language may be a barrier; as well, these individuals may not have the social networks or navigational knowledge to be able to identify where they can seek information or assistance. Francophone communities raised similar concerns regarding access to information and services, particularly in areas that are more rural or remote. As well, those who live in low- income may have more challenges in locating accurate and comprehensive information that relates to them, and both persons with disabilities and older adults are more likely to live in low-income. A focus group with members of the Residents Councils for long-term care homes highlighted the many barriers to information experienced by people who live in these settings.

The Frameworks recommend considering whether those charged with implementing the law have been provided with adequate ongoing training and education to enable them to perform their duties in a way that respects the principles, including training and education on the Charter, Human Rights Code and the Accessibility for Ontarians with Disabilities Act, anti-ageism and anti-ableism. It was the strong view of the vast majority of stakeholders consulted during this project that Ontario’s system falls significantly short in this respect, and that the proper implementation of the law is jeopardized as a result.

E. THE LCO’S APPROACH TO REFORM

Improving access to education, information and skills development is a central priority for the LCO’s approach to reform of law, policy and practice related to legal capacity and decision-making. These elements are fundamental to reducing the implementation gap; promoting dignity, autonomy, security, and participation and inclusion; and responding to diverse needs.

As a result, the LCO’s recommendations focus on achieving the following objectives:

1. Promoting education and information that is:

• accessible in the broadest sense of the term, taking into account disability- related accommodation needs, the diversity among those affected by the law (including cultural and linguistic diversity), the circumstances of those living in congregate settings and remote or rural areas, and the barriers faced by those living in low-income;

• timely, so that individuals and institutions are able to access the information at those key transition points when they require it, including proactive provision of information as necessary;

• appropriate in terms of the kind of information that is provided; and

• trustworthy, in that it is free of bias or conflict of interest, as well as accurately reflecting Ontario’s laws and good practice.

2. Increasing the coordination of the provision of education and information, so as to provide users with a clearer point of access, as well as enabling the identification of gaps and the development of priorities and innovative strategies.

3. Maintaining a collaborative approach to the development of resources, so that organizations with expertise in the subject and intimate knowledge of user needs can be supported to develop information and educational resources that meet user needs.

4. Identifying clear accountability for the coordination and provision of education and information related to legal capacity and decision-making.

F. RECOMMENDATIONS

Overall, the draft recommendations put forward by the LCO in the Interim Report

received strong support from a broad range of stakeholders, including the Alzheimer

EDUCATION AND INFORMATION: UNDERSTANDING RIGHTS AND RESPONSIBILITIES

Society of Ontario, the Advocacy Centre for the Elderly, the Ontario Caregiver Coalition, the Mental Health Legal Committee, Elder Abuse Ontario and others.

1. Improving Coordination and Strategic Focus in the Provision of Education and Information

Clear statutory accountability for education and information related to legal capacity and decision-making laws

There is no central or single institution in Ontario with a dedicated mandate to promote education and information on legal capacity and decision-making. As a result, there is confusion among stakeholders and the public as to authoritative sources of information, and a lack of coordination in the development of information and education. The LCO’s consultations revealed widespread confusion among almost all key stakeholder groups about where the information that they needed could be found. Consultations also revealed that system users are regularly relying on information that is inaccurate, outdated, or simply inapplicable to Ontario. Given that this legislation is now two decades old, the level of misunderstanding, confusion and simple ignorance is both surprising and disturbing. This is particularly so because of the fundamental nature of the rights at issue.

Many stakeholders advocated for the benefits of a strong, central coordinating body for this area of the law. ARCH Disability Law Centre has proposed that persons affected by legal capacity and decision-making laws would be best served by a system that includes a central coordinating body, though one with a mandate much broader than education and information:

Persons with capacity issues require a central body that they can turn to for information about their rights, access to a dispute resolution mechanism, and legal advice or referral where required. Equally, support persons will need access to information and training to enable them to carry out their role effectively.This requires that there be a central body that can ensure that qualified and trained professionals are available to offer support and assistance to persons with capacity issues, train and monitor support persons, and resolve disputes between individuals and their support persons. … A central body would be well placed to monitor the entire supported decision-making regime and identify trends and issues that require investigation and reform.572

The LCO believes that the provincial government should establish a clear, statutory mandate to improve access to education and information related to this area of the law. This reform would:

• Help stakeholders and system users more easily able to identify a starting point for accessing the information and resources that they need, and to be appropriately confident about the trustworthiness and applicability of the information that they source;

• Improve coordination of the resources now being allocated to information and education in this area, ensuring that work is shared rather than replicated, and that scarce resources are effectively deployed; and

• Promote a more strategic approach to the development and dissemination of information and resources than is possible within the current extremely decentralized approach, so that gaps, promising approaches and potential partnerships are systemically identified, and resources are targeted where they will have the most significant impact.

This proposal is not meant to undermine the important work carried out by many organizations, but to allow for the development of a more coherent and strategic approach to education and information in this area, by identifying a central location of responsibility. Such a clear statutory statement would also have the effect of recognizing the essential role of information and education in the successful implementation of these laws, and in protecting the autonomy and safeguarding the rights and wellbeing of those directly affected.

This proposal received strong support during the LCO’s consultations. The Alzheimer Society of Ontario, for example, commented,

This recommendation should be enacted as early as possible since this mandate is a foundation for improving the application of law in this area. While other parts of the report may require “progressive” or gradual implementation, this should be acted upon early in the process.

Similarly, the City of Toronto’s Stakeholder Consultation Results emphasized that “education and creating a ‘one stop shop’ for authoritative information will go a long way, right away, to correcting misunderstanding and potential for abuse”. Service provider stakeholders at the City of Toronto highlighted the value of consistent messaging and standardized, accessible information. 573

It is not uncommon in other jurisdictions to provide a statutory mandate for education and information in this area of the law. The 2015 Irish legislation that reforms that nation’s legal capacity and decision-making laws specifically tasks the new Director of the Decision Support Service with promoting “public awareness of matters (including the United Nations Convention on the Rights of Persons with Disabilities…) relating to the exercise of their capacity by persons who require or may shortly require assistance in exercising their capacity.”574 More specifically, the statute gives the Public Guardian and Trustee responsibility for establishing a website or otherwise providing for electronic dissemination of information to members of the public. The Public Guardian and Trustee is also responsible for promoting public awareness of the law to persons directly affected, as well as those who have responsibilities under the Act.

In the Australian state of Victoria, the Office of the Public Advocate is required, among other functions, to “arrange, co-ordinate and promote informed public awareness and understanding by the dissemination of information” about the provisions of their legal capacity and decision-making legislation, the role of the Tribunal and the Public Advocate, the duties and powers of guardianships and administrators, and the protection of persons with disabilities from abuse and exploitation, as well as the protection of their rights.575 The Public Advocate undertakes a range of education and information activities, including the provision of community education sessions to a range of stakeholders, publication of fact sheets and other information documents, and provision of support to persons using the system.576

Ontario already has several examples of legislation that include a dedicated mandate to promote education.577 That is, this proposal is not unusual in the context of legislation that directly affects rights, as does this area of the law.

Examples of Ontario legislation including mandates for education and training

Provincial Advocate for Children and Youth Act, 2007: the Provincial Advocate is responsible to “educate children, youth and their caregivers regarding the rights of children and youth”.

Accessibility for Ontarians with Disabilities Act, 2005: the Accessibility Directorate includes among its functions “conduct[ing] research and develop[ing] and conduct[ing] programs of public information on the purpose and implementation of this Act”.

Human Rights Code: the functions of the Ontario Human Rights Commission include developing and conducting programs of public information and education and promoting awareness and understanding of, respect for and compliance with the Code.

The LCO does not take a position on which organization or government department should be given this legislative mandate. The provincial government will be in the best position to decide this issue. The LCO notes, however, that there are at least four potential options: the PGT, a new department, an expanded and re-envisioned Capacity Assessment Office, or the tribunal proposed in chapter 7. Each option may have benefits and drawbacks which will require further review.

It is the LCO’s view that the central coordinating office should not supplant, but coordinate, support and enhance the valuable work already being done by community, advocacy and service organizations that have direct ties to those using or implementing the laws. These organizations often have, in addition to existing relationships as trusted sources of information, deep knowledge of information and education gaps, and considerable experience in devising education strategies that are appropriate for their particular communities. Given the wide range of individuals and institutions affected by this area of the law, no one organization can single-handedly meet all needs.

Priorities for education and information

The LCO’s research and consultations demonstrate that there are at least four pressing educational and informational priorities in this area:

• Improving visibility of and access to information: Because there is currently no central information source, individuals and smaller organizations are often unsure where to look for the information that they need. Many individuals participating in focus groups mentioned contacting three or four different offices to find information. Others had difficulty identifying where they would begin the search for information. Creation of a central source for information and education on these issues would make it easier for individuals to locate information.

• Ensuring access to accurate information: Concerns have been raised about the accuracy of the information that individuals or institutions are accessing. Individuals or organizations may inadvertently rely on outdated information, or on sources from other jurisdictions. As well, because this is a complex area of the law, some resources may inadvertently incorporate errors. ACE and DDO identified the problem of reliance on inaccurate information about the law governing health care consent and advance care planning as a major concern.578

• Developing a more strategic, proactive and coordinated approach: Because education and information in this area has been developed in a fragmented fashion as organizations develop materials or initiatives to meet their own mandates and the needs of their own communities, they may not be aware of each other’s work, and so efforts may be unnecessarily replicated. As well, there may be communities or needs that are not being served, because there is no organization that has the resources or the mandate to address them. The new function could work with existing structures and institutions to identify needs and develop strategies, initiatives and appropriate materials.

The LCO believes that the creation of a visible, accessible, authoritative source of information would make a significant contribution, given the widespread confusion among those interacting with the law. For the organization allocated responsibility for education and information, the creation and maintenance of such a clearinghouse should be a priority, whether it creates it in-house or works organizations with relevant expertise, such as Community Legal Information Ontario.

General Informational and Educational Needs

While particular groups will have specific needs to be addressed, in general, education and information in this area should include the following areas:

• rights and responsibilities under law, including means of enforcing rights and resolving disputes;

• the concepts underlying the law, including legal capacity, and substitute and supported decision-making;

• the principles that animate the law, and their links to the fundamental human

EDUCATION AND INFORMATION: UNDERSTANDING RIGHTS AND RESPONSIBILITIES

Consistency in the content of information is central, but dissemination may be local, rely on partnerships and community networks, and respond to the needs and strengths of particular communities.
rights as expressed in the Human Rights Code, Charter of Rights and Freedoms and international instruments, including the Convention on the Rights of Persons with Disabilities;

• autonomy-enhancing decision-making practices; and

• resources and supports available to persons directly affected, to family caregivers and to those acting as supporters or substitutes.

In a province as large and diverse as Ontario, there will always be challenges to disseminating and accessing information, challenges thoughtfully considered in the Law Foundation of Ontario’s Connecting Across Language and Distance Report.579 Consistency in the content of information is central, but dissemination may be local, rely on partnerships and community networks, and respond to the needs and strengths of particular communities.

Many consultees highlighted the value of creating practical plain language tools or guides in a number of different languages or targeted to the needs of specific communities, such as Aboriginal older adults, or members of particular newcomer communities, recognizing where appropriate that different cultural understandings of the same concept may require sensitive translation or preferably, guides originally written in languages other than English or French.

In addition to general priorities and needs for information and education, the LCO also heard about priorities and needs for specific audiences.

Persons Directly Affected

Key information gaps identified for persons directly affected include the following circumstances in particular:

• the importance of planning ahead, including both the benefits and risks of powers of attorney (and if implemented, the proposed support authorizations and decision-making networks), as well as information about how these documents can be customized to the needs of the individual;

• the nature of assessments of capacity, including the appropriate usage of such assessments and the rights of individuals related to assessments of capacity;

• the roles and responsibilities of substitute decision-makers (and supporters if incorporated into Ontario law); and

• their rights to recourse under the law, should they feel that they have improperly been found incapable or that a substitute or supporter has misused their powers.

Families and Substitute Decision-makers

The following were among the many gaps family caregivers and substitute decision- makers identified:

• the purpose and impact of a power of attorney or a guardianship;

• the specific responsibilities of an attorney or guardian;

• the concept of legal capacity, especially including its decision-specific nature;

• principles and good practices for decision-making, including the responsibilities to encourage participation, and to take into account the values and wishes of the individual;

• the rights of persons directly affected by decision-making laws, including rights to request a new capacity assessment or to challenge a finding of incapacity under the HCCA;

• practical guidance on keeping accounts, encouraging participation in decision- making and respecting existing decision-making abilities, managing financial responsibilities, and advocating for the individual that they have been appointed to assist;

• information about practical supports and resources that are available to them; and

• appropriate methods of addressing family disputes or concerns about misuse or abuse of an appointment.

Tools might also focus on areas where there are widespread shortfalls in skills or understandings among SDMs: for example, it was suggested that it would be helpful to make available resources to assist substitute decision-makers with keeping records, or developing management plans. The Alzheimer Society of Ontario commented “These materials should help families as a whole understand substitute decision- making processes and reasonable expectations family members may have in terms of information sharing”.

The information and education needs of professionals and third parties will vary widely, depending on the nature of their interaction with the law and the particular communities or clients they serve or interact with. Professionals who are responsible for implementing the law (such as health practitioners, lawyers and social workers) will often require in-depth, comprehensive training and tools, as the issues that they deal with are frequently extremely complicated. Service providers may need access to more basic information: the LCO heard considerable need for information on issues related to the concept of capacity, the various mechanisms for assessing capacity, and the appropriate response to concerns about abuse or misuse.

Education and information may take on a variety of forms, including print or online materials, public awareness campaigns, in-person training or education sessions, or information hotlines, among others. It would be the role of the mandated institution to identify the most pressing needs and develop the appropriate strategies to meet them. In addressing the needs of persons directly affected, the mandated institution should take into account the factors identified in the Frameworks, including the needs of individuals in rural and remote settings, as well as those in congregate settings where access to information may be more challenging; outreach to cultural communities; disability accessibility; and involving persons directly affected in strategies for outreach to those groups.

THE LCO RECOMMENDS:

49: The Government of Ontario

a) assume a dedicated statutory mandate to:

i. identify strategies and priorities for outreach, education and information;

ii. coordinate and develop ongoing outreach, education and information initiatives;

iii. develop and distribute materials regarding legal capacity and decision-making;

b) delegate this mandate to an appropriate institution.

50: The education and informational materials referred to in Recommendation 49 address the information and education needs of:

a) persons directly affected by the law;

b) family members and substitute decision-makers and supporters;

c) professionals who advise on and apply the law; and

d) service providers who interact with the law.

51: In developing education and information strategies and materials, the responsible institution:

a) take into account the needs of diverse communities affected by the law, including provision of materials in plain language, in multiple languages, in a variety of disability-accessible formats, and in non-print formats (such as, for example, in-person or telephone information) and digital formats;

b) address the needs of linguistic and cultural communities;

c) give specific attention to the needs of persons living in settings such as long-term care homes, psychiatric facilities, hospitals and other settings where access to the broader community may be limited;

d) consult persons directly affected by the law, families, and those who work with or represent these individuals.

e) work in partnership with other institutions and stakeholders with interests or expertise in this area;

f) ) identify opportunities to work with and build on the strengths of community institutions, including religious and cultural institutions; and

g) develop and maintain a central clearinghouse for education and information materials.

2. Improving Information for Substitute Decision-Makers and Supporters

Provision of information and education to family members acting as SDMs was widely identified as a priority across multiple stakeholder groups. A number of stakeholders suggested that at least some education be mandatory. For example, in its 2014 submission, the Mental Health Legal Committee (MHLC) recommended mandatory education respecting the roles and obligations of attorneys and guardians. Completion of qualifications or a course ought, in the view of the MHLC, to be part of the appointment process or required on the commencement of the appointment. The MHLC noted in its submission,

Beyond the prevention of harm to the incapable person, requirements that information and advice be provided to attorneys and guardians before their actions are under scrutiny would be preventative and could result in a net cost savings in government and judicial resources otherwise directed at enforcement.

Kerri Joffe and Edgar-Andre Montigny of ARCH Disability Law Centre took a similar view in their paper commissioned by the LCO.

At minimum, the training should educate decision-makers about their legal obligations under the SDA; the scope and limits of their decision-making authority; and the rights of the ‘incapable’ person. The training should educate decision-makers about how to carry out their functions in a manner that respects the rights-based principled approach to legal capacity. For example, decision-makers should understand the principle of protecting and promoting the autonomy and independence of ‘incapable’ persons, and should be aware of their role in implementing this principle in practice.580

The Australian state of Victoria currently provides optional training sessions for newly appointed guardians and administrators. The Victorian Law Reform Commission, in its review of guardianship law in that state, supported reforms to allow the Victorian Civil and Administrative Tribunal (VCAT) to order individuals to complete training as a condition of appointment as a guardian or administrator.581

The LCO agrees that a central component of a renewed focus on education and information should target SDMs and supporters (if included in reformed laws). Given that the numbers of persons who act as SDMs in Ontario is very large, the LCO does not believe it is feasible to institute a mandatory certification or training program, at least not within the resources presently available.

THE LCO RECOMMENDS:

52: Information provided in materials for those acting as substitute decision- makers or supporters include instruction on the legislation, statutory duties and the rights of the affected individual, effective and autonomy-enhancing decision-making practices, tools (for example, for maintaining records) and resources where further information and supports can be found.

As a simple means of further supporting access to information for personal appointments, standard forms for powers of attorney and the proposed support authorizations should identify how these individuals can access further information and education, through links to the proposed central clearinghouse, for example. In addition to amendments to the existing standard forms for powers of attorney including such information, it could be included in the proposed forms for support authorizations, statements of commitment and notices of attorney acting.

THE LCO RECOMMENDS:

53: The Government of Ontario include appropriate information materials on the standard forms for personal appointments.

For individuals appointed through the automatic process under the HCCA, a relatively simple means of improving access would be to ensure that the health practitioner, upon identifying an SDM in order to seek consent, provides basic information to the SDM about the role, their duties and how to access further information.

The Ontario Court of Appeal in M. (A.) v. Benes canvassed the importance of the provision of information to a substitute decision-maker under the HCCA, to allow that person to fulfill their obligations under the Act.582 A prior decision by the Superior Court of Justice had found that the principles of fundamental justice required that SDMs be informed early in the process of their rights and duties under section 21 of the HCCA, including the criteria by which their treatment decisions would be judged by the Consent and Capacity Board (CCB) and the powers of the CCB on review. The Court held that the failure of the HCCA to include effective provisions for explaining their rights and duties to SDMs was unconstitutional, since it violated section 7 of the Charter of Rights and Freedoms.583 The Court of Appeal overturned this ruling, finding that properly construed, section 10(1)(b) of the HCCA already imposes a statutory obligation on health practitioners to ensure that SDMs understand the statutory criteria when deciding whether consent to a proposed treatment should be given or refused.

In practice, as the submissions of stakeholders indicate, SDMs under the HCCA are not consistently provided with such information. As part of the reform of the rights information regime under the HCCA proposed in Chapter 5, the LCO suggests that the duty of the health practitioner to provide this information be codified and clarified. To be of use, this need not be a complicated process: provision even of a standard pamphlet to all SDMs appointed in this way would be a considerable advance on the current state of affairs in which SDMs may find themselves making important and difficult decisions with no guidance as to their legal responsibilities.

THE LCO RECOMMENDS:

54: The Government of Ontario amend the Health Care Consent Act, 1996 to create a clear and specific duty for health practitioners to provide information to substitute decision-makers regarding their roles and duties under the Act, as part of the process of seeking consent; the creation of a standard, statutorily mandated form may support health practitioners in carrying out this responsibility.

As well, the LCO believes that, where an external appointment is made, the adjudicator should have the power to order the appointee to complete training where the circumstances warrant: obviously personal appointments do not offer the same opportunity to require training at the outset of the appointment, but adjudicators should have the power to order training of SDMs or supporters in other circumstances where disputes are brought before them.

THE LCO RECOMMENDS:

55: Adjudicators be empowered, in a matter before them with respect to the Substitute Decisions Act, 1992, to require a guardian or person acting under a power of attorney or support authorization to obtain education on specific aspects of her or his duties and responsibilities.

3. Strengthening Education and Training for Professionals

As was briefly described above, professionals who must apply legal capacity, decision- making and guardianship laws in the course of their work potentially receive information and education about their roles and responsibilities from a wide array of sources, including their educational institutions, regulatory bodies, professional associations and employers, as well as from government and from experts and academics (such as the National Initiative for the Care of the Elderly, for example).

The plethora of professions involved in applying legal capacity, decision-making and guardianship laws, together with the multitude of information providers, makes developing recommendations for improving education and information tailored to these needs challenging.

The recommendations in Chapter 5 regarding the role of Health Quality Ontario, the compliance mechanisms related to the Long-term Care Home Act and the Local Health Integration Networks (LHINs) are also substantially relevant to issues of training, education and information among professionals and others working in the field of health and long-term care. The recommendations outlined below should be understood in concert with those recommendations.

Educational institutions provide the foundation for professional understandings and attitudes, as well as often providing access to ongoing information and education programs. Service providers participating in the City of Toronto’s consultations commented that “Service providers should not have to go to law school to understand capacity issues. This kind of education could be embedded in the training of social workers, nurses, etc.”.584 It is important to remember, however, that many professionals are now educated outside Ontario, whether elsewhere in Canada or abroad, which places some limitations on the immediate potential impact of reforms in educational curricula on practice in the field: this is a point emphasized in the submission of the College of Audiologists and Speech Language Pathologists of Ontario (CASLPO).

The LCO believes that the health regulatory colleges can play a strong role in the education of health professionals in this area. The Regulated Health Professions Act (RHPA) provides Ontario’s health regulatory colleges with a common legislative framework for regulating their members’ skills, practices and conduct.585

Section 4 of the RHPA creates a Health Professions Procedural Code, which is deemed to be part of each health profession act.586 The responsibilities of the colleges include, regulating the practice of the profession and governing the members; developing, establishing and maintaining standards of qualification; developing, establishing and maintaining programs and standards of practice; and developing, establishing and maintaining standards of knowledge and skill and programs to promote continuing evaluation, competence and improvement among the members.587 The RHPA sets out a general governance template, with each regulated health profession governed by a “profession-specific statute outlining its scope of practice, the controlled acts its members can perform (if any), and titles restricted to members”.588

As well, the RHPA has institutionalized the concept of “quality assurance” in the regulation of Ontario’s health professionals.589 Though the health regulatory colleges maintain discretion in designing quality assurance programs, all are required to: (i) leverage continuous education and professional development to improve patient outcomes and (ii) regularly assess and improve its members’ competency.590

All regulated health professionals are expected to participate in a continuing competence program that encourages members to “demonstrate the ways in which they have maintained their professional competence and enhanced their practice”.591 As well, members should be well-acquainted with their college’s quality improvement strategy which “aims to improve work processes in order to provide better quality service”.592

The health regulatory colleges employ a number of quality assurance mechanisms, including mandatory examinations and performance assessments, to stimulate continuous learning, monitor compliance, and trigger enforcement protocol when necessary. The RHPA allows for variation in the design of quality assurance programs across health professions to ensure colleges have the flexibility they need to fulfill their overarching public interest mandate in a way that addresses the unique needs and concerns associated with their context. Each college outlines how continuous learning and professional development initiatives are implemented, most likely through a centralized template so as to allow for comparative analysis and systematic evaluation of the results.593

Professional colleges also play very significant roles in the ongoing education of their members. The health regulatory colleges develop educational tools, guidelines, courses and other materials to assist their members with their professional responsibilities. The range of activities and materials is very wide, as is to be expected given the diversity of contexts in which health professionals operate, and may include videos, webinars, interactive tools, conferences and presentations, practice guidelines, practice advice services and more. This educational mandate may of course include information or tools related to capacity and consent. For example, the College of Audiologists and Speech Language Pathologists of Ontario has developed an interactive “Consent Tool”, which provides suggestions for discussion points in various contexts.594 The College of Physicians and Surgeons has regularly used its publications to communicate with members regarding frequently occurring issues related to consent and capacity. The educational efforts of the health regulatory colleges can play a very important role in improving the effective implementation of this area of the law. While capacity and consent are important across the health care spectrum, the contexts in which these issues arise vary considerably from profession to profession. The law and the principles which animate it should be consistently applied, but health regulatory colleges can play an essential role in identifying effective approaches for implementation in their particular context.

The Royal College of Dental Surgeons of Ontario commented in its submission on the Interim Report,

Each college will have to work with their quality assurance departments and committees to produce educational material and other resources that help health care providers to better understand the rights and responsibilities surrounding legal capacity and decision-making. Depending on how the Ministry of Health directs health regulatory colleges to address this issue, these colleges will have to work collectively and separately to ensure their members are educated about legal capacity and decision-making rights and responsibilities through their quality assurance programs. RCDSO believes that consideration should also be given to the consistency of this information among regulatory colleges and the various health care providers they oversee. Consideration should also be given to the time and resources required for regulatory health Colleges to implement such changes.

Stakeholders pointed out that, for many family caregivers who act as SDMs, health professionals and social workers are their key points of contact and sources of information: it is therefore essential that these professionals are well-equipped, not only to apply the law correctly, but to provide at least basic assistance to individuals directly affected and their families.

The Law Society of Upper Canada which regulates lawyers and paralegals in the public interest, also has a strong educational mandate. In additional to licensing requirements, lawyers and paralegals who are practising law or providing legal services must complete in each calendar year at least 12 Continuing Professional Development Hours in “Eligible Educational Activities”. The aim of this requirement is the maintenance and enhancement of a lawyer’s or paralegal’s professional knowledge, skills, attitudes and professionalism throughout the individual’s career. The LSUC itself provides a wide range of educational offerings on many subjects, including issues related to legal capacity and decision-making.

THE LCO RECOMMENDS:

56: Institutions responsible for educating lawyers, health practitioners, social workers and other professions involved in this area strengthen their activities with a view to devoting greater focus to issues related to legal capacity, decision-making and guardianship, as they affect their particular profession, and in particular:

a) Professional educational institutions re-examine their curricula in order to strengthen coverage of issues related to legal capacity, decision-making and consent, particularly in the context of training in ethics and professionalism; and

b) Professional regulatory bodies examine their educational offerings and consider developing further practice guidelines or standards.

57: Health regulatory colleges falling under the Regulated Health Professionals Act include issues related to legal capacity and consent as a priority in their quality assurance programs, including identification and assessment of core competencies in this area.

58: The Ministry of Health and Long-term Care support and encourage the health regulatory colleges in developing quality assurance programs related to legal capacity and consent that promote legal rights and advance best practices.

G. SUMMARY

Based on the results of public consultations and research, the LCO has identified as a priority for reform the strengthening of the provision of education and information to those interacting with this area of the law. The LCO’s public consultations clearly identify widespread shortfalls in this area at the current time: these shortfalls affect the quality of the implementation of every aspect of this area of the law.

The Frameworks emphasize the importance of ensuring that persons with disabilities and older adults have the information necessary to understand and access their rights, and that those charged with implementing or applying the law have been provided with adequate ongoing training and education to enable them to perform their duties in a way that respects the Framework principles.

We have identified the following key priorities for strengthening the provision of education and information:

• identifying clearer accountability for the provision of appropriate and accurate information and education;

• increasing the accessibility of education and information for all those interacting with the law; and

• enabling a more coordinated and strategic approach to the development and delivery of education and information.

To these ends, the LCO recommends the following measures:

• inclusion in legislation of a clear responsibility for the development and coordination of education and information initiatives;

• creation of the capacity to identify gaps and priorities for the development and delivery of information and education; development and coordination of initiatives to meet these needs; and creation of a central clearinghouse where stakeholders can locate accessible, relevant and trustworthy information;

• strengthening of the ability to connect families and substitute decision-makers to education and information resources; and

• strengthening of the provision of information and education to professionals who are charged with implementing or applying the law.

These recommendations should be understood in the context of the recommendations in Chapter 5 to improve the quality of assessments of capacity under the HCCA and in Chapter 6 to promote understanding of persons acting under personal appointments of the responsibility which they are undertaking.