III. Summary of Research2017-04-04T15:11:55+00:00

A. Methodology

1. Overview of Methodology

The goal of this project was to capture the experience of what it is like to be ‘working within’ a supported decision-making regime in Canada. In order to capture a picture of how the regimes function on the ground, it was necessary to go beyond mere doctrinal analysis of legislation and engage in a more dynamic research methodology to extract information not readily apparent through doctrinal means. Thus, in order to get a more accurate snapshot of how supported decision-making regimes work, researchers adopted a mixed methodological approach. Researchers employed the following research methods:

  • Semi-structured interviews with expert interviewees (n=20) with at least 3 informants from each of Manitoba, Saskatchewan, Alberta, British Columbia and the Yukon (the “expert interviews”)
  • A series of interviews with adults (n=10) who have been directly engaged with supported decision-making in British Columbia, including both adults with some capacity challenges and people acting as their legal decision-making supporters (the “British Columbia experiential interviews”)[80]
  • A brief secondary anonymous survey to expert informants for any additional information or quotes, forming a separate document (the “follow-up survey”)
  • Doctrinal legislative research (the “legislative research”)

The research that led to the choice of these particular methodologies is explored below.

2. Interviews with Individuals with Professional Experience with Supported Decision-making—the Expert Interviews

a. Background Research into Methodology

A confidential semi-structured interview process was selected for expert interviews in the five designated jurisdictions. This section discusses the methodology for expert interviews with particular attention to study design and relevant research.

i. Semi-structured Interview: Strengths, Weaknesses and Challenges of this Approach

Several different methodologies were considered for expert interviews. Given the vast geographical distribution of experts across four provinces and one territory it was not plausible to conduct a focus group, and so this methodology was eliminated from consideration. Fully structured interviews would not provide the appropriate “back and forth” flow required to deeply probe. Further, an unstructured interview is too difficult to analyze and quantify.

Semi-structured interviews were then considered. The advantages of semi-structured interviews are myriad. A semi-structured interview can:

Help to define the areas to be explored, but also allows the interviewer or interviewee to diverge in order to pursue an idea or response in more detail. This interview format is used most frequently in healthcare, as it provides participants with some guidance on what to talk about, which many find helpful. The flexibility of this approach, particularly compared to structured interviews, also allows for the discovery or elaboration of information that is important to participants but may not have previously been thought of as pertinent by the research team.[81]

The strengths of semi-structured interviews include:

  • The depth of the information able to be extracted;
  • The fact that the respondent can influence the topic so that unexpected issues and topics emerge;
  • The researcher can probe to understand perspectives and experiences; and
  • The topic guide [of questions] ensures that a core list of questions is asked in each interview, and because the order of questions is not fixed the flow and sharing of views can be more natural.[82]

The weaknesses or challenges of semi-structured interviews are:

  • Trained interviewers are needed to probe without being directive or judgmental;
  • The analysis of findings is more difficult as it must be done by the person or people who conducted the interviews;
  • The researcher has to try to avoid bias in analysis;
  • The researcher needs to know something of the local culture to capture the interviewees’ real meaning;
  • The analysis can be time-consuming; and
  • In some cases it can be difficult to generalize findings.[83]

The weaknesses were mitigated by using a trained social science researcher experienced in interview research, having all findings analyzed by the researcher, ensuring that the researcher did have familiarity with each of the jurisdictions,[84] ensuring that the interview schedule was planned as far as practical in advance, and using conscious “checks” to reduce bias.

As the strengths significantly outweighed any weaknesses, and a plan was established to reduce weaknesses, the semi-structured interview format was adopted.

ii. Informant Selection, Confidentiality, and Research Questions

Semi-structured interviews depend not only on skilled researchers, but also on having “good informants”. A “good informant” for a semi-structured expert interview must have the following attributes:

  • Be knowledgeable about the topic—an expert by virtue of involvement in specific life events
  • Be able to reflect and provide detailed experiential information about the area under investigation
  • Be willing to talk[85]

This 3-step model of a “good informant” was adopted for the research methodology and applied in the selection of interviewees.

This research initiative follows the World Health Organization model (WHO guide), for group selection and recommended sample size for semi-structured interviews.[86] In particular, guidelines for a semi-structured interview methodology in community research is explained in s. 3.4 of this WHO guide as follows:

You will need to limit the number of interviews, as semi-structured interviews are quite time-consuming to conduct and analyse. The aim is not to get a representative sample of the various categories of informants, but to gather a substantial body of information from them. Try to limit the list of the people you will interview to around 20-30 who are likely to give you most information on the problem and can choose from a variety of perspectives. You usually only need to interview 3-5 people from each of the identified groups.

While the research proposal only called for 15 total respondents initially, this number was increased to 20 in accordance with the WHO recommendations. Identified groups were also considered, and 3-4 “types” of experts were grouped across jurisdictions. Further discussion of these groups is found under Qualitative Techniques below.

Hardon, Hodgkin and Fresle describe well the semi-structured interview approach:

When conducting semi-structured interviews, the interviewer is prepared with a list of questions and topics to be discussed. The order of the questions and topics parameters are left undefined and are adapted to the flow of the discussion. It is best to start with a topic that is not sensitive and is important to the respondent. Thus, an informal, friendly atmosphere can be created, facilitating a ‘natural’ flow of ideas and opinions. The researcher acts as a moderator, guiding the respondent from one topic to another. Conducting such interviews requires a skilled moderator.[87]

The WHO guide suggests that a foundational step of successful semi-structured interviews is to have a checklist of questions to ask each participant. Moreover, having broader “prompt questions” also helps to shape the scope of the discussion.[88] Prompt questions are useful to ensure that:

…key issues are addressed and the flow of the interview is maintained. The planned order of the prompt questions does not need to be strictly adhered to…for this style of interviewing. Consideration should be given to the phrasing of prompt questions to avoid leading the participant. This is crucial because the interviewer’s expectations can affect the participant’s response.[89]

As such, a checklist of five questions was developed, with ten prompt questions for the expert interviews.

Expert interviewees feel safest providing frank information if they are freed from fear of being quoted and if the interviewer assures the expert interviewee that they will not be identified by their revealed experiences. Confidentiality was thus built into the interview process. One of the findings of a significant literature review on ethical issues and concerns on the part of interviewees suggests that interviewee worry over confidentiality is an inhibiting factor for semi-structured interviews. Further, the “most common threat” felt by interviewees, was that they would be “identified…in writing up of reports and, particularly, the use of quotes. Whilst individuals may not be identifiable to the general public, they may well be identifiable to…the peers also involved in the study”.[90]

In order to confirm whether the issue of confidentiality was valid in this research study, a short series of key informant discussions (n=5) was held. Of these key informant discussions, all agreed that confidential interviews would provide the most candid and frank results.

The semi-structured interviews were thus designed to be confidential, with explanations to interviewees that their name and organizations would be cited as having participated, but that no quotations would be used, and that while institutions may be cited, no reference to “who said what” would be included in the study.

The literature review of best techniques in semi-structured interviews noted above suggested that use of stories and hypotheticals was also encouraged as a method of animating the information garnered through the confidential interviews.[91]

Cases or examples were solicited from expert interviewees wherever possible. Also, stories of people with disabilities were included in the analysis portion of the research project.

iii. Expert Interviewee Recruitment and Process

Key informants who would be “good interviewees” were identified on issues relating to supported decision-making in each jurisdiction. Each of the appropriate offices of the Public Guardians (PG) and Trustees (in Alberta the PG, in Manitoba, the Vulnerable Persons’ Commissioner) was contacted and representatives from each agreed to participate. Existing relationships were of significant assistance in recruitment, due to a higher knowledge of the research organization and pre-existing trust.

Each of the associations for Community Living was contacted as well, with introductions from a known leader in the disability community. Due to the compressed time of this study, there was limited time to build trust in this community and it took somewhat longer than ideal to recruit participants. However, once a relationship was established participants from different organizations dedicated to issues of Community Living were willing to be interviewed. Additionally, leading professors who had been involved with community engaged research and law reform in elder and disability law were canvassed.

Members of capacity or rights-related tribunals or non-profit organizations were also approached to participate in this study. Several members who were recruited were very engaged in this issue and willing to participate. Last, members of the legal profession in the different jurisdictions were approached in order to garner those viewpoints.

In order to ensure full frankness, expert interviewees were assured that while their names would be credited, no specific quotes would be attributed to them, and the resulting research paper would focus on the content of their observations, rather than the positions of the people giving them. In many cases, experts were pleased to be able to provide a frank report with the appropriate assurances.

The interviewees were provided with a Backgrounder to the Project, an email explaining the purpose of the interview, and the five questions that would be central to the interview. They were also provided with the ten “prompt” questions in advance.

Two interviews took as little as fifteen minutes to complete. Two interviews took 90 minutes or longer due to the interest on the part of the interviewee to continue discussing the topic. On average the interviews lasted 20-30 minutes.

The questions were designed to capture a rounded picture of supported decision-making relationships, including instances where they have been used successfully, barriers and how people navigated challenges effectively. A strength-based perspective in this approach was key. Due attention was given to identifying issues that require clarification in the process of supported decision-making. A full list of questions asked in the semi-structured expert interviews can be found in the Section V Appendix.

3. Experiential Experts

a. Background Research on Methodology

For people with disabilities, the goal of the experiential methodology was to ensure the greatest level of inclusion and accessibility possible, taking into consideration the time limitations of the study. Significant research into best research practices was undertaken before designing the experiential interview portion of this study.

The importance of including people with a disability in research on disability issues was notably underscored in the Report of the Commission on the Status of People with Disabilities[92], and the United Nation’s Convention on the Rights of Persons with Disability[93], adopted in December 2006. Significant literature supporting these foundational declarations suggest a need for research methodology which respects that individuals who have a disability are considered experts in their own experience. Use of stories[94] and sharing of experience is foundational to good research methods in this field, particularly on how to overcome challenges uniquely faced by people with disability or cognitive impairment.[95]

To understand the lived experience of people with disabilities, significant attention was given to the methodological process of involving people with disabilities in the research—specifically in identifying what research methods can best accommodate people with disabilities in communicating their experiences of supported decision-making in British Columbia. Background research in exploring disability research ideals, realities and qualitative methodology was undertaken.

Inherent in this focus is the core philosophical question: is the research on or with people with a disability. Participatory action and emancipatory research show promise because they explore practical solutions to the issues of pressing concern to people with disabilities.[96] Action within the lens of social research is addressed well by Oliver:

The development of such a paradigm stems from the gradual rejection of the positivist view of social research as the pursuit of absolute knowledge through the scientific method and the gradual disillusionment with the interpretative view of such research as the generation of socially useful knowledge within particular historical and social contexts. The emancipatory paradigm, as the name implies, is about the facilitating of a politics of the possible by confronting social oppression at whatever level it occurs.[97]

More recently, researchers have restated the emancipatory paradigm as central to research on disability policy.[98] The agenda has become one where research highlights multiple and significant social inequalities while aiding people with impairment in politicizing and mobilizing, pointing hopefully to some better future.[99]

Alternatively, a critical realist approach skirts the discussion of disability as a social construction or creation and instead focuses on the experimental basis of impairment and an exploration of the day-to-day problems associated with living with a disability.[100] Research to date has embraced the idea of changing and removing the barriers faced by people with disabilities largely in an ideological way. The principles guiding disability research, while conceptually well grounded, in practice often remain broad in scope and are seldom mapped out in plain, practical terms. A number of concerns have been raised regarding research involving people with disabilities.[101] It is important to question the extent that a research project can empower participants or result in positive impacts on their lives.

It may be more challenging for people with profound intellectual or communication skills to participate in research and caution is needed when determining how to include people with diverse abilities in research. Notably, there is a concern that if persons are only partially included in the research, it may also be understood as partially rejecting or excluding them.[102] Setting the criteria for research and obtaining consensus from the disability community is a difficult task, in which there is an inherent danger of priorities being lost in the focus on a desire to define what constitutes disability research and how it should be conducted.[103] With this balance in mind, we set to investigate potential methodological approaches that can accommodate, empower and include people not only ranging in mental and physical abilities, but also from diverse backgrounds, including gender, ethnicity, class and sexuality.

b. Qualitative Techniques

The most prevalent methods for conducting research with individuals with impairment include semi-structured interviews, photographic techniques and proxy responses.[104] The majority of disability research to date follows a semi-structured interview approach. Less popular methods include focus groups, questionnaires and surveys, narratives and ethnography. Many researchers agree that there needs to be flexibility in methods for data collection in response to the changing needs of disabled people. Most researchers favour a mixed methods approach.[105]

People with learning disabilities need to believe that their views are valid and important in order to feel the research process is relevant and worthwhile. Semi-structured interviews provide the opportunity to develop a relationship with the participant and assure them that they will be listened to and understood. This requires sensitivity from the interviewer. It may also be helpful to offer the accompaniment of a familiar, valued person in the interview process.[106]

Generally, open-ended questions or the use of narrative yield more data than the use of statements. Narrative methods enable people with learning difficulties to recall, recount and review their lives, valuing them as experts.  Questionnaires can be interpreted as limiting the respondents’ flexibility in answering questions, leading to limited responses. Questions asked outside a meaningful context that have no relevance to the individual being interviewed would likely be dismissed. The challenge here is that people with emotional, learning or communication difficulties may require highly structured support in answering questions. Yet, such support may skew results through the nature and phrasing of questions.[107] Ottmann and Crosbie explore this concept further and suggest methods that elicit a person’s view may produce a number of biases including: recency effects, a tendency to agree with the viewpoint of the interviewer, providing information that is not factual, and positive response bias.[108]

A powerful approach to help develop trust and respect is to check back in a process of participant validation. This “checking back” stage becomes even more important when the individual’s communication difficulties may pose barriers to understanding what the participant is trying to communicate with words.[109]

For individuals with profound learning or communication difficulties, the whole interview may rely on interpretation by a representative who is emotionally and communicatively involved. Often this person is a caregiver or relative who is emotionally connected to the person with a disability who is being interviewed. The support person can act as a proxy, answering questions as if they were the other person. Research suggests that approximately half the time proxy responses matched with those provided by people with a disability in an interview setting.[110] Inherent in this gap is the tendency for proxies to address issues of importance for the individual with a disability rather than issues important to them. This is particularly complex, and ironic, when the focus of the research itself involves discussion of substitute, “proxy”, and supportive decision-makers. This may place the experiential research interviewee with a disability in a conflicted position, and may create confirmation bias or “interpretative filtering”.

Nonetheless, additional emotional support of a familiar, valued person involved in the interview process can provide comfort to a participant that helps empower them to express their views. Focus groups have also successfully been used to help build confidence among participants by providing safe, non-threatening environments.[111] Unfortunately, focus groups can be difficult to organize and produce uneven outcomes.[112]

The research methodology comparative study by Ottmann and Crosbie suggest a combination of qualitative techniques which can be helpful when conducting disability research.[113] Visual cues can accompany interviews as useful prompts. When time permits, using programs such as “Photovoice”[114] may also be a useful tool to use in conjunction with interviews.[115] Photovoice, however, can be somewhat less appropriate for people with an intellectual disability, particularly those with obsessive tendencies.[116]

In conclusion, it is likely that the most appropriate mix of methods will depend on the time, budget and focus of the research to be conducted. Flexibility is key. Rigid assumptions about individuals who have a disability requiring a particular methodology may be a more significant constraint on the research than anything the individual brings to the situation.

c. Recruitment Strategies and Questions

Finding experiential experts—people who were engaged in supported decision-making in British Columbia —was a significant challenge. Many representation agreements are done informally and within a family structure. While there is an opportunity for people to register their representation agreement, this is not required, nor is the register easily accessible by researchers. Nidus (the Representation Agreement Resource Centre) indicated that it was under significant funding strain and was not willing to participate in the research initiative. Different relationship strategies including offering honoraria to non-profit organizations to act as research partners in the recruitment process were somewhat successful.

Discussions with Community Living BC suggested interest and willingness to support contact with their community members. Outreach was also undertaken to a variety of non-profit organizations, the BC Adult Abuse and Neglect Collaborative, and to lawyers who work in the fields of capacity and planning, with the goal of encouraging these groups to reach within their own networks to help find users of supported decision-making to participate in the group research.

Materials were posted on the CCEL website and distributed by email to existing contacts. Overall, while research recruitment was initially slow, as trust relationships increased, so did the ability to connect with potential experiential interviewees. The information provided for outreach is included in the Section V Appendix.

The majority of interviewed experiential experts were affiliated with the Planned Lifetime Advocacy Network and the Family Caregivers Network Society, and all interviews were conducted in Vancouver and Victoria, British Columbia.

 

4. Rationale for Methodological Approaches—Summary

A mixed methodological approach was used to access information about how supported decision-making is functioning “on the ground” in the five jurisdictions. Doctrinal legislative research on the legislation provides the starting framework of the legal models. Both a narrative set of descriptions and comparative chart formats allows for readers to access often difficult to compare legislation in a clearer fashion. Chart formats also allow for increased accessibility by providing a visual comparator model.

Semi-structured confidential expert interviews were chosen as the best methodology to create a horizontal review of how, in practice, people in the five jurisdictions found the supported decision-making regimes to be working. The WHO methodological format, plus research gained from extensive literature reviews, provide strong rationale for this methodological choice.

Semi-structured interviews with people who used or were using supported decision-making in the jurisdiction where this legislative option has been available longest (British Columbia) was undertaken. The semi-structured interview process was augmented to ensure accessibility and to increase trust. Research partners were used to access participants and to create a discourse framework for the experience. Study design methodology was adaptive to the needs of participants.

A survey of ten questions was distributed to people who have been engaged in the research. This survey acts as both a research “follow up” and a secondary data source. Research participants were invited to distribute the survey electronically to their networks. By using this mixed methodological approach, the researchers were able to access significant data results.

a. Challenges and Limitations

The original design was to significantly limit the expert interviews, with a minimum of three experts per jurisdiction to a total of fifteen interviews (n=15). This data set was expanded to twenty at the design stage in accordance with the WHO methodology adopted, detailed above.

While nearly all of the experts were very well connected to community experience and very sensitive to the needs to persons with intellectual, psycho-social or other disabilities including cogitative impairment due to age-related illness, predominately they were not speaking from lived experience.[117] While the interview numbers were appropriate, a larger pool of experts to choose from would be additionally helpful. As expert interviewers became more confident that they were part of a cohort of colleagues being interviewed, their willingness to be involved in this project increased.

Finding research participants in British Columbia who were actively involved in supported decision-making was challenging. There is no one central data set to access. Working from trusting relationships is critical when researching a group of potentially vulnerable adults; a high level of research comfort and trust was required before the research team was able to access experiential interviewees. Working with community partners to conduct research requires a high degree of transparency, organization and bridge-building. Working within such a compressed research period, some of this relationship support had to be expedited. Ultimately, we conducted most of the interviews in December, more than two months later than hoped, because it took so long to build trust with stakeholder organizations who could link us to experiential experts, and because the key organization which we had expected to link us to interview subjects, Community Living BC, was not able to connect us with participants.

Attempts were made to engage an appropriate representative group in the knowledge that such groups are sometimes not appropriately diverse or representative. For this project we interviewed a mix of supported decision-makers (one), representatives (supportive decision-makers, seven) and caregivers of adults with supported decision-making agreements (two). The research team took thoughtful steps to try and mitigate this limitation, but the inclusion of only one supported decision-maker remains a limitation of the research.

B. Findings

1. Expert Interviews

Genevieve is a 23-year old woman with Down’s Syndrome. She has a part-time job at a local library shelving books. She has never had the legal capacity to make a power of attorney to deal with her property and financial matters. Her 55-year old parents are active in encouraging her community engagement and development but are also highly concerned with their daughter’s inability to manage finances. They are both financially protective of her, and want her to have as much independence as possible. They give their daughter a routine allowance for spending money, but they pay her bills directly.

There is a supported decision-making document in place, naming her parents the joint supportive decision-makers. However, recently Genevieve inherited $40,000 from her aunt. Her parents took Genevieve to their financial institution to open a Registered Disability Saving Plan (RDSP) in their daughter’s name. Because Genevieve did not have the legal capacity to make financial decisions, she could not open an RDSP account herself. She cannot make a power of attorney due to her capacity challenges not meeting the standards required.

Her current supportive decision-making arrangement does not allow someone to make complex higher lever decisions for Genevieve on a substituted basis; rather, her supportive decision-making agreement only has the scope to support Genevieve in making her own decisions. She needs a legal substitute decision-maker to legally “stand in her shoes” and act as her full decision-maker. In short, Genevieve will need a guardianship in place in order to open an RDSP account.

In the end, her parents have to choose between making a costly guardianship application that would have the effect of declaring Genevieve incapable (something which the family has always specifically avoided doing), and not having an RSDP for their daughter.

a. British Columbia

i. Functionally, how is it all working in your jurisdiction?  What is the “on the ground” experience in your expert opinion?

Representation agreements in British Columbia were one of the first legal and social experiments in trying to find ways to formalize an inherently informal type of decision-making. The representation agreement regime was predominately designed in response to the disability community’s desire to ensure that people with intellectual disabilities have the highest degree of choice in maintaining their own legal autonomy over decisions. There was widespread agreement across those interviewed that this innovative model has been embraced predominately by this community, and was not seen as particularly helpful to older adults or to people with other types of fluctuating cognitive impairment, such as people with traumatic brain injury. People in the “community living movement” seem generally appreciative of both the framework and the innovative atmosphere that British Columbia has around it.

As a mechanism to organize supported decision-making, the representative agreement system is seen by some as problematic. One respondent agreed to go on the record as saying that:

The lawyers didn’t like [representation agreements] because they thought that representation agreements were too open to abuse, and too unclear. The folks in the intellectual disabilities movement wanted to get rid of all the powers of attorneys and to replace the entire thing. But of course it takes time to understand new systems. The goal of representation agreements was to formalize what was already happening informally. They might not work for everyone but they work well for some.[118]

British Columbia experts whom we interviewed raised questions about the level of capacity that an adult would have to possess to sign such a document. In particular, the representation agreement’s movement away from the common law test for capacity, based on the ability to “understand and appreciate”, was difficult for many to accept.

There is a sense that British Columbia has some of the most progressive practice and service models for delivery, which can strongly support persons with intellectual disabilities. However, concerns remain that in practice there is “slippage”. The concern is that instead of using representation agreements for supported decision-making, in some people’s hands they are a more palatably branded version of substitute decision-making. They may, in some cases, be used to overprotect within a nearly plenary guardianship-type purview, under the guise of a supported decision-making system.

Two British Columbia experts indicated that they knew of instances where parties have moved ahead with representation agreements knowing that the person that they are supporting has a very limited understanding of the document or the framework. Within certain circles this concern is discussed openly. However, the concern about possible liability or negative effect remains low. When queried about why concerns about this are low, both responded that most people who are using supported decision-making documents in British Columbia are members of a small community where representatives are highly engaged in the lives of the person they are supporting.

The spirit of the supported decision-making arrangement is not one which people challenge; rather, the practice is easily circumnavigated, particularly in times of stress. In British Columbia, the system appears to be more about formalizing an inherently private, pre-existing type of decision-making, rather than imposing benchmarks or protective regimes. At this point, there is no evidence that this system has any markedly increased outcome of abuse, and people we interviewed suggested no particularly different level of concern about abuse in supportive decision-making systems versus substitute decision-making systems.

In British Columbia, the supported decision-making provisions in s.7 of the Representation Agreement Act[119] appear to be more an opportunity to provide dignity, accessibility and personhood with the increased comfort of a document for third parties. It seems less a system designed to regulate personal activities step-by-step.

Overall, supported decision-making pursuant to British Columbia representation agreements have not had a wide adoption. People outside of the disability community, particularly seniors and people with psycho-social or brain injury, prefer an easier-to-understand and perhaps a more “legal” framework. There is a sense that the philosophy of supported decision-making is a good one to have imbued in law, but that the system is not yet one which people can yet execute with ease or confidence. For people who are not overly worried about abuse, formalities and liabilities, supported decision-making occurs “off the books” in terms of legal documentation. It is a practice that occurs in families and circles of supporters on an everyday basis.

Supported decision-making is working in some environments. Lawyers and third parties struggle with what the agreements mean in terms of liability and who is responsible for the decision. Third parties, in particular, emphasize the need for clarity and responsibility, when they are uncomfortable or not well trained in the decision-making continuum. It is not surprising then, that the findings support that supportive decision-making arrangements work best with third parties who know the vulnerable adult and the supporter.

Monitors, which are permitted in section 12 of the Representation Agreement Act, are generally seen as a positive option. Having a monitor allows more easily for more than one person to be involved, which can better support making difficult decisions in the “grey zone.” Monitors are seen as acting as a sober second thought and a further check or balance before having to go to court.

There is a tension between people who understand supported decision-making as a system that supports and enables an everyday or familial practices, and those who understand supported decision-making as a specific legal framework. The former is well-acknowledged and agreed upon. The latter is a source of struggle and some difficulty.

The supported decision-making arrangement can work well if there is a supporter who cares, but there are numbers of people who do not have anyone close in their life that would be an appropriate “supporter”.

Generally there was a sanguine sense that third parties within health care often do not seek consent appropriately regardless of the legal decision-making framework.

There is very little litigation around representation agreements and essentially none around supported decision-making pursuant to a representation agreement. However, there is also very little litigation around capacity and guardianship issues in general. As there are relatively few supported decision-making agreements in comparison to powers of attorney or guardianship, it would be unlikely that many cases would surface. Further there may be issues of self-selection at play. Families who are more prone to paternalism or are shy about liability will still seek a court ordered committeeship (guardianship); families who are actively involved in supported decision-making circles and networks may be more naturally comfortable with the informal and the grey areas. Overall, however, it is notable that the court-bases processes are difficult for people with capacity issues to access, and there are nearly no legal aid systems available to support substitute decision-making cases.

Representation agreements with supported decision-making are sometimes used when the more vulnerable adult wants to make decisions that “push back” against their family. Supported decision-making via a representation agreement can be a declaration of difference. It can be a way that more vulnerable adults can formalize their values, wishes and beliefs as different from those of their families.

There was a concern that supported decision-making is not particularly appropriate for people with psycho-social / psychiatric disordered disabilities. The concern lies particularly in the inability of the person who may be experiencing a mental break to understand and appreciate their own situation. It is inappropriate to try to reason within a supported decision-making framework with someone who is in a psychotic state, for instance.

Older adults who have degenerative diseases of aging can also benefit from supported decision-making in the early stages of their disease; however, there is a strong tendency to move to substitute decision-making for this group. Substitute decision-making is easier and more convenient for many in the older adult cohort. For older people with degenerating capacity issues, timeliness of decisions is often of the essence. There is evidence to suggest that there are different types of issues being dealt with at different stages of the lifecourse. For instance, younger people with intellectual disabilities may be building functional capacities and looking to support positive ways of increasingly ability to manage money, engage with employment opportunities and consider future options for marriage or children. By contrast, older people with dementia may be most concerned about health and personal care planning, financial arrangements such as wills or use of life-long saved assets, and quality of life / end of life decision. While there are certainly cross-over areas, it remains that lifecourse can have an important impact on the type of decisions being made, and as a result, the appropriateness of supported decision-making. Further, a good substitute decision-maker will, in practice and by legislative requirement, include the vulnerable adult as much as possible in decision-making.

Indeed, while there may be value in the early months or years for older people with diseases like dementia, that value deteriorates with their condition and actually can become a tool of abuse. The question remains unresolved as to whether a certain minimum level of capacity is required to enjoy the possible benefits of supported decision-making.

There are some concerns about the effect of the lifecourse. While people with intellectual disabilities have not historically lived long lives, this is changing. It is expected to see entirely new socio-medical issues arise in the next decade, as people with Down Syndrome are living longer lives with dementia[120].

There was a moderate concern that there would not be enough people to volunteer to be supported decision-makers. There was a sense that the farther away one went from a close familial relationship, the harder it is to recruit supported decision-makers and engage in supported decision-making. In other fields, such as in criminal law circles of support, some evidence suggests that the idea of surrounding, supporting and monitoring another adult is good in theory, but unless it is underpinned by strong relationship bonds, that volunteer enthusiasm soon wanes[121].

Others noted that the positive and enriching relationships which people can have with adults with cognitive impairment or intellectual disabilities is just not well understood yet. Increased education, normalization and better systems can bring about social change which will encourage reciprocal values exchanges between adults with diminished capacity and other adults in the community. However, these positive relationships can be inhibited by the effect of widespread attitudinal barriers, such as ageism or ableism, thus negatively impacting the prospects of effective implementation of supported decision-making.

ii. What, if any, roadblocks or uncertainties exist which frustrate the process?

While representation agreements have existed for some time now in British Columbia, they are not widely understood. Pockets of comprehension about the legislative system exist, predominately within intellectual disabilities communities, but this is offset by a more general bewilderment about the law and the practice. The comprehension is highest with people who are fully acquainted with the benefits of supported decision-making and who have family, friends and professionals surrounding them who will provide support. There are roadblocks to accessing or understanding supported decision-making through representation agreements if these conditions are not in place.

There was a mixed sense of which professionals cause roadblocks, and the needs and uncertainties of third parties that often frustrate the process. Some noted that health care providers and lawyers did not trust supported decision-making and that it was awkward and too imprecise a system to “take instructions from”. There was a strong sense that health authorities are involved in highly inappropriate “forced planning” which overrides any supported decision-making opportunity. When one connects with the health authority, there is a push in place for people to declare substitute decision-makers.

Micro-boards are not well understood. However, some systems, which are in place to provide structural safeguards, such as trusts, meet with more comfort from the third party professionals.

There was a general agreement that financial institutions do not feel comfortable with supported decision-making and the “push back” from the financial sector is one reason why supporters often turn to more formal or even court ordered options.

Overall there was a sense that the majority of British Columbians neither know about, nor care about, supported decision-making. The small pockets of passionate advocates are the few who understand the opportunity supported decision-making holds.

Further, there was a general agreement that the sectors supporting adults with cogitative impairment are being squeezed. When services are being cut and when non-profit organizations are fighting for every dollar, there is a slip backwards into congregated services and plenary substitute decision-making.

The costs of putting supported decision-making in place are unclear. The real or perceived cost, can still act as a roadblock.

In summary, the lack of general awareness of supported decision-making is augmented by the general discomfort of third party professionals. There is a general consensus that, no matter the structure in place, people will stop talking to the adult in question and take substituted decision-making from the supported decision-maker instead. Many lawyers in British Columbia have a poor opinion of representation agreements. Their concerns centre around the lack of clarity around who is liable for which types of decisions, the risk of abuse or not being able to take clear instructions from a person with a significantly impaired level of capacity, and the general lack of understanding of how supported decision-making works in practice. Lawyers are still much more familiar with substitute decision-making pursuant to powers of attorney or guardianship and these systems seem more “clear”. They fit the other concepts of decision-making and responsibility found in law, and do not require a nuanced understanding of capacity or rights of personhood to effect legal transactions. However, it is important to note that there are lawyers who specialize in these areas of law who are much more comfortable and familiar with the regime.

iii. What issue(s) need clarifying in the process

Overall the biggest concern requiring clarification is “what does supported decision-making mean in practice?” Many people have ideas of what they think supported decision-making is, but no one really knows how to do it. There is a complete lack of teaching for supported decision-makers around best practices, expectations and pragmatic skills.

iv. What works really well?

The opportunity to have supported decision-making is good, but it is quite abstract. There is the positive sense that people’s rights and dignity are being respected. Informal arrangements are also working well in British Columbia. However, there is significant importance in having a legal document that can recognize the autonomy and independence of an adult who might otherwise be brushed aside. To some extent, having a supported decision-making legal document can help to overcome third party concerns about privacy issues.

When education is available, it is always a positive. Representation agreements and supported decision-making are better understood when there are educational sessions and a variety of different ways to access information, particularly at the community level.

 

v. What thoughts / recommendations do you have? 

There is no real research done on the effectiveness or methods of good supported decision-making. There needs to be a significant amount of work done on this beyond anecdotes. This is especially important now that the CRPD has embedded the concept. People have embraced it at face value because it seems like a “good idea”—and it probably is—but there is no actual evidence to support this notion.

There should be an independent evaluation of the legislation, in Canada at least, along with a review of the practices.

Education and training should particularly be made available to the Public Guardian and Trustee. This group is actively involved in the field, but like everyone else, is struggling with the practicalities of it.

Overwhelmingly there is a need for a focused educational campaign at several levels—both at the community level and the governmental level—but also a strong educational outreach to third parties such as health care providers and financial institutions. Supporters or potential supporters need some type of education that they can access which can help them understand their roles and responsibilities, including how to make decisions.

Some informants believed that there should be no mental competency tests at all in an ideal world, and that the conversation should be all about accommodation.

There was a strong consensus that community-based non-governmental organizations need to have a strong and stable role to engage in this work.

b. Yukon

i. Functionally, how is it all working in your jurisdiction?  What is the “on the ground” experience in your expert opinion?

The Yukon has a very small community, which is very closely connected.  Supported decision-making is used, although it is quite often informally done. Because of the strong rural nature of the Yukon, supporting people who need help is very dependent on the family or members of the community. Social services are few and far between and are mostly centred in the capital. Court formalities are not preferred for decision-making, but guardianships often get used in order to more easily access benefits and services. If people are using supported decision-making it is really because they are actively engaged in the strong community living groups, particularly for people with intellectual disabilities or foetal alcohol syndrome. Overall, the supported decision-making legislative regime is a formalization of what has been happening informally for years. The community is close-knit and built on personal relationships, rather than legal ones.

There are few complaints, but then there are very few cases of supported decision-making being formalized either. Uptake of this legal option has not been very strong. People are more concerned about capacity issues within the issues associated with foetal alcohol syndrome or within the criminal justice context.

Overall, supported decision-making is seen as being a good thing to have “on the books”, but it has not had significant uptake or impact in the Yukon.

ii. What, if any, roadblocks or uncertainties exist which frustrate the process?

In the Yukon, getting information is a challenge. This is particularly true if you are outside of the capital. While government services work and people are trying to help, resources are not well known. The supported decision-making regime is not well understood either, which creates a challenge for people wishing to find alternatives to substitute decision-making. Guardianship orders for people with intellectual disabilities are more often than not required as minors acquire the age of majority, as government and health services often want the comfort and clarity of this type of document.

Overall, supported decision-making utilizing an associate decision-maker is not well understood by citizens, the legal profession or third parties. However, where these supported decision-making arrangements exist, they are not generally challenged.

 

iii. What issue(s) need clarifying in the process

The systems are opaque. While the legislation is innovative and provides multiple choices for people, that knowledge about the innovation is not transmitted to citizens. Very few people have a clear idea on how to navigate the system required to create, foster or maintain supported decision-making circles. In practice, it is also somewhat unclear where the line between substitute and supported decision-making lies.

iv. What works really well?

Overwhelmingly, the “small town effect” is what makes supported decision-making work. There is a sense that everyone helps everybody, and people take care of their own.

The existing non-profits who work on issues related to community living and also related to seniors are helpful. While none of them have much in terms of stable funding, the culture in the Yukon is one of collaboration and thrift. People in the community feel that they can do a lot with a little.

v. What thoughts / recommendations do you have? 

Any project on issues related to supported decision-making, or decision-making in general, needs to seriously consider the issue of sustainability and knowledge transfer in the Yukon. People rotate back to the south and the brain trust related to key social issues can be so easily lost. Other projects in the Yukon are funded as pilots, but then are not followed with appropriate resources to actually sustain or spread the knowledge around supported or other forms of decision-making. It would be helpful if there were clinics to help people fill out forms. It would also be helpful to have a system of advocacy which links the PGT’s office with community groups around the issue of how supported decision-making skills should be developed.

c. Alberta

i. Functionally, how is it all working in your jurisdiction? What is the “on the ground” experience in your expert opinion?

Alberta is historically shaped by having its Dependent Adult Act (DDA). While the DDA allowed for a “gentler” form of only partial guardianship, the ideals of less restrictive approaches were subverted. People sought nearly plenary guardianship, save and except one area, in order to be able to represent that the adult was only under a partial guardianship. The data in the province, then, seemed to indicate that it was historically a forward thinking jurisdiction, but the practices belied this. When designing the new legislation, there was a strong desire to overcome this history and to find real and practical ways in which supported decision-making could work.

The new legislation has met with great favour in the province, although is still not very well understood. Albertans now understand that they have three choices: supported decision-making, which is a formalized by a free downloadable form and signed by the parties involved; co-decision-making, which is a court-based process and significantly more formalized, and, guardianship, which is the court-based formal substitute decision-making process Albertans have been used to.

When the new legislation was being released there was more information about these supported and co-decision-making options. As that initial push has waned somewhat, so has the level of understanding about these options.

There is a sense that lack of widespread uptake of supported or co-decision-making in Alberta may come from a generational source. Historically, there was a stronger sense that families with adult children with intellectual disabilities should be protected, and that full guardianship was the right course to pursue. As generations shift, the siblings of these adult children are starting to become the supports, rather than the aging parents. This cohort of siblings are much more open to supported and co-decision-making on a principled basis. However, there is strong consensus that in order to help make the shift from a default guardianship model to supported or co-decision-making, there must be structures in place on a paid on-going basis in the field. Dedicated supports from funded NGOS, the Public Guardian and other agencies are necessary to achieve the required shift in culture and knowledge base.

Enquiries from people who have been guardians are now increasing. People are casting about to understand the new regime, but generally feel comfortable with the bifurcated approach.

The supported decision-making form is very easily completed. It is free, easy to use, and can be filed online. While the document is by its nature informal and easy to change, it is seen as having the backing of legislation. The co-decision-making model leans more closely to a substituted decision-making model. Third parties are often more re-assured by the documents made pursuant to this co-decision-making process, as it is viewed as indicating a higher level of both capacity on the part of the vulnerable adult, as well as a higher level of authority on the part of the co-decision-maker.

When one is seeking a supported or co-decision-making formalization, there were differences in advice and reaction. Lawyers, friends and family often encourage the more formal co-decision-making process. There is still an overall comfort with having the “blessing” of the court.

In practice, the interchange with between the individual and the person providing advice and assistance is more person-centred when using the supported decision-making form model. There is a concern that where the co-decision-making model is used there is a shift towards more authority on the part of the co-decision-maker, which feels more like a substitute model of authority.

One of the reasons why people are looking for supported or co-decision-making for people who may “borderline not need it” otherwise, is a fear for what will happen in an emergency health crisis. Without a document allowing inclusion in the decision-making process, family and supporters are concerned about being cut out of health information and decisions. Additionally, there is concern that in emergency situations health care professionals will add a Do Not Resuscitate order to a vulnerable adult’s chart without consultation.

However, it was noted that some health care and financial third parties are becoming increasingly familiar with both supported and co-decision-making models and are not discriminating between them. It was suggested that one alternative explanation for this decrease in anxiety on the part of third parties was their lack of overall understanding of the process of decision-making generally, and their confusion over capacity issues specifically.

There was a general sense that cost was not a significant barrier to supported decision-making. The supported decision-making forms are free for download and no third parties are required in order to formalize the arrangement.

There was a mixed response when asked if cost was a barrier in co-decision-making. For the court-based co-decision-making model people are not required to hire a lawyer, particularly if the matter is a simple and uncontested one. However, in cases where lawyers and expert documents are needed, an adult can apply to have those costs covered by the state. A doctor’s or designated assessor’s report can cost $500-$700. For legal fees, families can ask the Crown to pay the costs, or if the matter before the court involves a sizable estate (more often found in cases involving seniors) then the parties can apply to have that estate pay. Full co-decision-making hearings, especially contested ones, could have costs similar to guardianship hearings.

However, community living advocacy groups and other supporters have been active in trying to ensure access to justice. There is a sense that if people are supported by an active community and if there is a reasonable plan to manage the question of cost, then people tend to be eager to move forward.

As the legislation is still quite new, there have been very few challenges to it in the courts. It is still unclear what will happen in a co-decision-making arrangement where either party is no longer capable of functioning in their roles.

Older adults are using the supported decision-making model to avoid privacy issues. It is being used as a justification for allowing family members or friends to attend doctor’s appointments or to receive health information in particular.

Liability concerns on the part of supported or co-decision-makers are low.  There is little concern about being held to a standard of support or co-decision-making, as the adult remains the one in control. This holding of the final veto allows the adult to revoke the arrangement. It does little, however, to address undue influence or emotional abuse.

The people best suited to supported or co-decision-making include: people with language barriers, especially older adults with language barriers; and high functioning adults with intellectual disabilities, where their families are pushing the adult’s rights forward in a positive way—but are still interested in being kept in the loop regarding a few key issues. The approach can be helpful for people with brain injury or learning disabilities. Supported and co-decision-making are not viewed as viable longer-term options for people with dementia. Use of a supported decision-making document may help in early stages, but after that, these adults should be supported to make their advance directives or plan for a substituted decision-making model in future.

As the legislation was only brought into force in 2009, there has been an adjustment period while people work out appropriate checks and balances.  For instance, there is no formal review process in the co-decision-making model similar to the guardianship six-year review process, which gave rise to some concerns. However, getting rid of that review process has considerably assisted some families, for the cost of the review process was significant. Instead, there is a much stronger front-end system of vetting put in place, including criminal records checks for co-decision-makers, notifications to interested parties, and the ability to have anyone complain. There is a sense that abuse will happen in all systems, as it is a societal issue. However, the delicate balance of accessibility, appropriate formality and cost seems better with the new legislation overall.

ii. What, if any, roadblocks or uncertainties exist which frustrate the process?

People do not really know what skills they should employ to be a supportive or co-decision-makers. It is a real gap. People are trying to sort out the responsibilities, the methodology, and the steps to supporting a good decision—but people are really on their own. Without good models, there can be slippage back to a de facto substituted system. It would be helpful to have some models or education around best practices that could be shared.

Additionally, some people who have been institutionally or historically in the field of working with adults with intellectual disabilities have a set way of doing things. Use of supported or co-decision-making may be adopted easily in language and philosophy, but in practice there are calcified ways of doing things that are difficult to dislodge or change.

 

iii. What issue(s) need clarifying in the process

Some people cannot be persuaded that they will not be held liable. While this does not seem to be an issue in fact, there is fear around it, and it shapes some people’s refusal to act as supported or co-decision-makers.

The rights, roles and responsibilities should be made more clear, in order to encourage people to step into these supportive or co-decision-making roles. Careful and detail-oriented people often make the best supported or co-decision-makers because they take the matter seriously. Without enough clarity, a cohort of good people is being missed in this process.

Some lawyers have great difficulty in taking instructions from people with capacity challenges or intellectual disabilities. Other lawyers feel very uncomfortable balancing their professional obligations of confidentiality with the reality of supported or co-decision-making. It is unclear to many lawyers if and where there is a breach to solicitor-client privilege.

It is unclear if there are enough people to be supportive or co-decision-makers. For those people relying on families, when their parents age-out, they will be dependent on social services, where the staff turn over rates are very high. There are significant numbers of marginalized individuals who are without someone to provide free help and support. For these people the chances of them ending up under guardianship is high; while for others of the same abilities, they may end up being their own decision-makers. There is a sense of inequity to this.

iv. What works really well?

There are some excellent support organizations and advocacy organizations. Some of these community organizations are contracted by the Public Guardian to help people with paperwork, which can include paperwork associated with supported or co-decision-making. This assistance is seen as especially useful in helping people overcome their fear about using supported and co-decision-making, particularly around seniors’ issues. Community and Public Guardian presentations are also very helpful in transferring knowledge and allying fears.

The community living organizations do excellent work in providing coaching and family supports. This work has extended to issues relating to supported or co-decision-making.

Some third parties really understand the new system or are more comfortable with the idea of supported decision-making. For instance, pharmacists have been leaders in this, likely because the idea of taking medications has always been one which has a family or group support system.

The supported decision-making document is easy to use, free, and simple to understand. The co-decision-making system is more complex, but it still allows those who wish to have the court’s blessing to receive it without going under a fully guardianship system.

Having a system which fundamentally allows the control to remain in the hands of the autonomous adult is important and successful.

v. What thoughts / recommendations do you have? 

Continuing to move to a single point of entry for information and services is highly recommended. Often people are forced to chase down information and become distressed trying to use the internet to click on various forms. Having material, including forms and guidebooks, exclusively available online is a barrier. It is much better to maintain an in person service delivery model. Increasing connection between the Public Guardian and the Public Trustee is needed and ongoing; however, this also needs to be augmented by good information about social services. Having this fuller understanding of the services and options can help to reduce the reflex of moving to guardianship.

d. Saskatchewan

i. Functionally, how is it all working in your jurisdiction? What is the “on the ground” experience in your expert opinion?

In theory, the decision-making legislation in Saskatchewan, like most other modern generations of decision-making statutes, is supposed to be infused with a co- or supported decision-making approach wherever possible. There are excellent statements of principles which clearly indicate that the vulnerable or capacity-challenged adult should be in charge of, or involved in, as much of the decision-making as possible. That does not mean, however, that this happens “on the ground”.

Supported decision-making and guardianship are addressed in the same statute. It is unclear if this is a blessing or a curse. If each had their own statutes, then these regimes might be seen as more equal, and people might have to make a more conscious decision as to their route. In fact, co / supported decision-making is ghettoized.

The legislative models on paper are in a vastly different place then the reality. Plenary guardianships are very much still the norm. The legislative changes were not useless, and they are important, but overwhelmingly the orders granted are plenary. Where a co-decision-making model is used in formality, the reality is still that it is plenary substitute decision-making in practice. Since the legislative option has been made available, only approximately 7% of cases involved any co-decision-making.

The harsh reality is that with the exception of the adult in question, the other actors want as much control, in the broadest version, as possible. Family, supporters, social service workers and third parties all prefer that plenary-type powers are sought; then people are allowed in practice to consult and support as they see fit.

Very often, no one in authority actually meets with the adult in question. Save and except a medical doctor, the adult may not actually have an opportunity to be seen, or connected with, social supports and services. The basis for the affidavit regarding capacity is generally provided by the medical doctor.

Lawyers are not fond of the co-decision-making legislation, and do not have a good understanding of what it means. Lawyers are also usually retained by the family members, who want to ensure that they can “get it all taken care of” in one fell swoop. The costs associated with formalizing supported decision-making can be significant. As such, it is often seen as being more practical and effective to reach for the broadest possible set of rights, to avoid having to redo the process later and spend more money (when capacity becomes further reduced).

The principles governing decision-making require that a court not grant an order for a form of substituted decision-making unless less intrusive options have been considered. However, in reality, this is often not done and the legal community does not prioritize this. This reality may be skewed by the fact that most people who are spending money on a lawyer to formalize decision-making processes are fairly far down the road in terms of needing substitute decision-making. Informal supported decision-making is likely happening on an ongoing basis within families of persons with capacity challenges, but these arrangements are not formalized in any way. These are considered ‘de facto’ orders.

There are two very different communities that are affected by decision-making legislation in Saskatchewan. The communities of seniors are by far the largest number of people under guardianship. The communities of people who have or who support people with intellectual disabilities are numerically smaller, but have a much stronger advocacy system around them. Overall, these two communities have opposite views. Seniors have often come from a life where they used to make their decisions and now cannot do so easily because of later life impairment. They can use some private planning like enduring powers of attorney ahead of time. Persons with intellectual disabilities and their supporters come from a place of less social power, in that the adults in question may have never been able to make their own decisions or craft their lives. They may have needed various supports their whole lives.

If there were greater education of all parties, including the third parties, then decision-making could move more towards the social work realm, and away from the legal realm. This would be a great leap forward in terms of culture and “on the ground” respect for persons with cognitive impairment and need of supports.

There was consensus that the Saskatchewan model leaned more towards the “assisted” rather than the “supported” decision-making model. It still has a high functional bent towards thinking of it as substituted or “highly advised” decision-making rather than the decisions being more in the hands of the adult with capacity challenges.

There was also consensus that the system of co-decision-making was designed in response to advocacy on the part of families of people with Down Syndrome and other intellectual disabilities. It was never really designed with the aging population in mind, nor to support people with psycho-social or brain injury impairment.

Regardless, having co-decision-making was considered a good idea, although the culture and supports to make it work in truth are not in place.

It was also agreed that the Public Guardian and Trustee was not in a good position to act as a co- or supported decision-maker due to practical considerations. Provincial auditor requirements and other rules and regulations do not lend themselves well to the co-decision-making processes. The ideal co-decision-making arrangement is typified by the caring and involved sibling who lives close by to the adult with an intellectual disability, and can help on a day–to-day basis, rather than an institutional representative.

 

ii. What, if any, roadblocks or uncertainties exist which frustrate the process?

For older adults, or family members supporting them, the requirement to “air their dirty laundry” in public is inhibiting. For many families, admitting that their family member has dementia is a matter of losing face and public status. This is particularly true for older adults who have been leading members of the community. Families would rather cover it up and keep it quiet. The co-decision-making process requires a certain level of divulgence to the public, which is inhibiting. Further, people who are interested in being substitute or co-decision-makers do not like having to put their own finances into the public sphere. As a result, many appropriate supporters are inhibited from stepping forward. However, there is a sense that if people understand why they need to divulge the financial information and that it can be kept private, then this might go a ways towards helping increase acceptance.

There is a significant lack of public legal education on co-decision-making. Co-decision-making applications do not need to be expensive or difficult, although this is not well-understood. In fact, much of the process is really just filling in forms and should not require a lawyer to be involved, but for the fact that the process is in the Court of Queen’s Bench. The fact that the process resides in the court system actually blocks access to justice.

Judicial education is also needed. Judges are not given the education needed to appropriately support co-decision-making and least intrusive approaches.

With respect to liability, co-decision-making in Saskatchewan can’t go against the decision of the adult unless property or person will be harmed (and this is not defined in terms of level). So the person is responsible for helping manage the process of the decision-making to give the adult the tools to come to the decision. Outside of fraud or theft it is hard to imagine someone concocting a process.

There is some concern about liability by third parties but not as much worry about the liability of co-decision-makers. The lawyers, however, are in fact quite concerned about the liability and the duties of the co-decision-maker and the liability of the third parties.

 

iii. What issue(s) need clarifying in the process

Lawyers find the process clear in the legislation and the forms are also quite clear. However, in practice, the process is very complex, and people need a lawyer to get through the system. Words like “service” or “style of cause” are utterly intimidating and confusing to people who are not in the legal field. However, there are in fact very few lawyers who practice in this area.

When the legislation was developed it tried to balance a simple and understandable process with protection against unreasonable family and health care professionals. Overwhelmingly, the culture swung to the side of protection, and thus the system became more complex and less clear.

Additionally, there is a lack of clarity around what types of decisions a co-decision-maker can block or have to allow, even if they do not agree with. The legislation requires that the co-decision-maker cannot stand in the way of the decision that the adult wants to make which is reasonable “on its face”. However, if the concern is deeper than “on its face” what role does the co-decision-maker have and how should they proceed?

iv. What works really well?

In Saskatchewan what works well is the property management aspect of the decision-making. There are good provisions for accountings to be rendered, provisions for reporting and overall supervision of the property. This is not actually always done in practice but the system is there. Courts feel comfortable working in the area of property, but not in the area of personal care decisions.

v. What thoughts / recommendations do you have? 

Getting co-decision-making out of the Court of Queen’s Bench would be very helpful. Movement towards a more informal tribunal system, or a system such as Manitoba’s Vulnerable Person’s Commissioner should be considered. Requiring a co-decision-making plan including a budget would be helpful. Having NGOs actively engaged in supporting people to use less intrusive approaches would be very useful. Having at least a full-time staff member at the Public Guardian and Trustee office dedicated to co-decision-making would very useful.

There should be dedicated education to judges, lawyers, social workers, advocacy groups and the community about how to do co-decision-making and why it is important. Training for co-decision-makers might even be mandatory and plans and metrics should be established so that it can be measured against.

Co-decision-making should be closer to the model of sentencing circles than guardianship. Ideally, there should be a panel of individuals with a lawyer as one of the supporters helping a person with intellectual disabilities make decisions, or in the case of an older adult, then a geriatric specialist as well. This is unlikely to ever work in practice, however, as resources are not available.

There should be a continuing outreach component on this subject. People need to understand what is being asked of them so that they do not inappropriately agree to be a co-decision-maker without understanding the time, effort and requirements.

A new legislative model should allow for a range of options, with different levels of support, and report to an informal tribunal.

e. Manitoba

i. Functionally, how is it all working in your jurisdiction? What is the “on the ground” experience in your expert opinion?

In Manitoba, the Vulnerable Person’s Commission derives authority from the Vulnerable Persons Living with a Mental Disability Act.[122] The Commission appoints substitute decision-makers for people with mental disabilities who require assistance. Typically these “deficiencies” must manifest before the age of 18. Clients of the Commissioner’s office include people with such conditions as Down Syndrome, traumatic brain injury, and cerebral palsy. When any person turns 18 in Manitoba they are presumed to have the rights of a capable adult. If they are not able to make their own decisions, then an application can be made to the Commissioner for a substitute decision-maker for personal or financial issues.

If the adult is captured by the vulnerable person’s legislation, then the Commissioner will make an assessment as to what areas of support or substituted decision-making are needed. If there is no appropriate friend or family member then the adult will be placed with the Public Guardian and Trustee. Accountings are required and cases are reviewed minimum every 5 years. The Commissioner accepts complaints as well, as appropriate.

Supported decision-making in Manitoba is only legislatively referred to in a very limited fashion. In s.6(1) of the Act supported decision-making is defined. However, if it is read closely, one sees that it is defined and referred to only in that section and then it is not referred as a term again anywhere else in the Act. Section 6 (2) notes that people providing support should be recognized and respected, but not really how that is to be accomplished. The term supported decision-making is alluded to again in the guiding principles to the Act, including references to “providing support” and “support network” of a vulnerable person.

On the ground, supported decision-making is really about trying to get a network of people around a person with cognitive impairment to help in everyday decisions, and less about formal financial or life decisions. The existence of a solid support network, even informally, can avoid a person being put under a substitute decision-making regime. Often, the support network is deemed enough to support the capacity of the vulnerable person.

The principles of respecting supporters combined with the obligation to use least intrusive measures infuses supported decision-making throughout the broader regime. As such, even if one is appointed to be a substitute, this does not obviate responsibility to be engaged in supported decision-making as well. Rather, it is included in the substituted decision-maker’s responsibilities. The adult in question must be aided in their capacity to understand the decisions in their lives, and any substitute must continually involve the adult in decisions to the greatest extent possible. It is, however, not pure supported decision-making in that the ultimate decision does not belong to the adult, but rather to a proxy.

Functionally, the community living associations are predominately against substituted decision-making. A few requests are made to terminate substituted decision-making arrangements in favour of supported decision-making; but they are rare. More often, people work within informal networks of support until there is significant need and then application to the courts for a guardianship order is the next step.

The Commission has approximately 5000 “vulnerable persons” under their ageis, but only 1600 of them have formal substitute decision-makers. As such, supported decision-making is clearly happening in this void, as only 35% of clients have a substitute. De facto supported decision-making often works fine, until a third party such as financial institutions, health care service workers or government agencies become involved. When these types of third parties become involved there usually is a movement towards changing the relationship to a substituted decision-making model. Third parties are often not comfortable with supported decision-making.

 

ii. What, if any, roadblocks or uncertainties exist which frustrate the process?

The process has been taken out of the court system in Manitoba, but the appeal system is to the Court of Queen’s Bench. Not everyone understands this multi-tiered system. Overall, people do not understand how supported decision-making is supposed to work in Manitoba and the legislative interpretation is unclear.

Social workers are also quite overprotective in Manitoba. This can be true of community service workers as well. Guardianships are supposed to be the last resort, but they are often looked to as a first option instead.

Not having enough legal aid in this area is a problem. But even if legal aid was available, the lawyers may not want to take on the client out of fear of being able to take direction. Ironically some lawyers have indicated that they will take instruction from a substitute decision-maker only, and not the vulnerable adult, when the very issue at hand is about avoiding having a substitute decision-maker appointed. It can be a vicious circle.

In many cases, supported decision-making is not presented at all as an option to families. Some social service workers are quite afraid of having a support network involved. The process also requires the community worker to attend monthly meetings and be actively involved, which they may not feel that they have the time or knowledge base to do.

iii. What issue(s) need clarifying in the process

There was consensus that research and evaluation of what works and what does not work should be undertaken. There is no ongoing contact with monitors to see if supported decision-making is actually happening or not.

Information is generally lacking on supported decision-making. Community living organizations have done work on education regarding the Vulnerable Persons Living with a Mental Disability Act and other supported decision-making issues, but some members of the community are uncertain as to how supported decision-making affects them. Workers in the social service system feel comfortable with guardianship or substituted decision-making much more than supported decisions-making systems. There is a lack of clarity about who makes the decision and what the liabilities or implications of that decision are.

There is a lack of clarity between certain systems. For instance, if a vulnerable adult wants to leave high school and move out of the family house at 18, and not stay until age 21, then they can fall into a black hole of services relating to housing. Supporters will have a very difficult time trying to exert authority or get information on behalf of the adult. The supported decision-making platform does not seem strong or clear enough to provide real leverage in advocacy.

Some people think supported decision-making is a right in Manitoba. It is not actually a right, but the guiding principles are important and should infuse the entire area. Whether this is achieved, however, is highly doubtful.

iv. What works really well?

Informal supported decision-making systems work well. Supported decision-making has been defined, however obliquely, in Manitoba law since 1996, and is part of its guiding principles, which is good. The message is out there for people to embrace.

Funded NGOs working in this area around community living do a good job.  They require stable funding in order to ensure that they can continue to do their work.

Community organizations are generally good at working in this area, providing workshops. One organization works directly with older people and gives educational seminars on supported decision-making. The government generally has not actively engaged in providing educational programs, but the non-profit sector can do a good job if it have appropriate funding.

 

v. What thoughts / recommendations do you have? 

The whole concept of having a supported decision-maker for people with intellectual disabilities needs to start when the individual is a child. If it was understood and embraced by family, schools and third party systems along the lifecourse, then there would be fewer abrupt roadblocks later on. Support networks are not built easily or overnight, so years need to be invested in this process. There is significant interest in Manitoba for revising its system to make supported decision-making more front-and-centre and more clearly understood. However, having the informal Commissioner process was seen as a leading model in Canada.

2. Experiential Experts 

Beverley is in the advanced stages of Multiple Sclerosis and doctors are recommending many different medical options. Her main caregiver, her daughter Samantha, is an excellent supporter and caregiver for her mother. She also understands her mother and knows how to communicate with her, even when Beverly’s speech and writing become limited by her condition.

Samantha does not feel comfortable with having the sole responsibility for helping Beverly to make health care decisions or end of life related decisions, and access appropriate care as her health conditions become more complex. Samantha is overwhelmed by the medical information about her mother’s condition and feels a lot of pressure around making the best decisions when her mother loses the ability to communicate her wishes and make decisions.

Beverly does not want to overburden Samantha with the upcoming medical decisions so she has decided to create a representation agreement. She has appointed her nephew and a close family friend to act as representatives alongside Samantha. The understanding is that the group will act as joint supported decision-makers as long as possible, and become substitute decision-makers once Beverly is no longer able to participate in decision-making. This arrangement allows for a communal decision making process, and Samantha feels more comfortable and better able to continue to support her mother, knowing she will not have to make all the decisions regarding her mother’s medical treatments.

 

a. Introduction to the Role of Representation Agreements 

In total, ten interviews were conducted with supported decision makers, representatives (supportive decision-makers) and caregivers of supported decision makers. The average participant in this sample had been a part of a representation agreement for five years, with a maximum of nine years and minimum of three months. None of the participants had altered their agreement at any time. Most were unaware that you were able to alter a representation agreement.

Although participants all described themselves as being part of a supported decision-making relationship, they generally characterized representation agreements as a legal means to make decisions on another person’s behalf when they are no longer able to do so, suggesting a substitute, advance planning framework. Half of the representatives interviewed were also the designated power of attorney for their supported decision maker. There was a general agreement that representation agreements differ from powers of attorney and advanced directives. Powers of attorney were identified as a legal means for financial arrangements, whereas a representation agreement was seen to primarily concern healthcare decisions.

Day-to-day use of the agreement varied widely. Some participants described using their representation agreement to oversee small household matters, such as paying the telephone bill for the supported decision maker. Others utilized the agreement to monitor finances, arrange personal care and navigate the healthcare system. Several representatives had used the agreement to successfully set up Registered Disability Saving Plans and Guaranteed Investment saving accounts for their supported decision maker.

Representatives also use representation agreements to advocate for their supported decision maker. This was most often detailed with respect to hospitals and care homes. Overall, representation agreements were described as a tool to ensure health, welfare and safety.

b. Creating an Agreement 

Most participants went to a lawyer to help them draft their agreement. One participant relied exclusively on Internet documents to set up their arrangement. Others used the help of organizations such as the Planned Lifetime Advocacy Network, Family Caregiver’s Network Society, NIDUS and the Law Society of British Columbia.

The process of setting up an agreement was described as confusing.  Participants were grateful to have the support of organizations to help them draft the agreements and questioned why there were not more resources dedicated to supporting this process. Many participants were glad to have completed their agreement but were unsure of how to direct friends or family in setting up their own. Accessibility is a large barrier for people to set up a representation agreement.

Participants who researched representation agreements themselves were often confused by the vocabulary: supported decision maker, adult, representative, representee and monitor. Seeking legal help was expensive for many of the participants and cost was identified as a barrier in obtaining an agreement.

There were various rationales for selecting whom to include in an agreement. Often, more than one representative would be named, most often three in total. Participants described a mechanism to help representatives make decisions by using a two out of three consensus. This approach was seen as beneficial to protect both the interests of the supported decision maker as well as a mechanism to relieve stress from the representatives.

Young adults were most likely to have their parents as representatives.  Extended family and friends also took on representative roles. In situations where there were no family or friends in place members from the represented religious community stepped in.

Selection of representative(s) was based on geographic location, family relation and knowledge of the agreement. Logically, lawyers who had experience in this field were noted as knowledgeable while those without experience were described as less helpful in deciding whom to include in the agreement. Overall monitors were not seen as very helpful and only one agreement had a monitor in place; participants were more likely to use 2:3 representative decision-making process or entrust an alternative representative.

c. Forming a Supported Decision Making Network   

Participants described their decision-making process in detail. Spouses and siblings were noted as common sources to turn to for advice. Some participants had a core group of five or more decision makers with only one or two appointed as designated representatives. Others described receiving help indirectly from their family—not with making the decision itself but with living with the results of their decision. The most common experience of this was spouses helping care for their in-laws.

Representatives expressed that they consult with their supported decision maker before showing the agreement to others. For agreements that worked well, the supported decision-maker was at the centre of all decisions. Representatives, friends, family and healthcare professionals would all surround the supported decision maker.

This is in accordance with most supported decision-makers wishing for their representatives to check in with them prior to using the agreement to enforce a decision. People that receive and interact with the agreement include: doctors, specialists, lawyers, social workers, financial institutions, social services and organizations that support peoples with disabilities.

d. What Participants Like Best About Being in an Agreement 

Representatives explained that one of the best things about being a part of a representation agreement is a rewarding feeling from knowing you are helping the supported decision-maker. Other themes identified include: reducing uncertainty regarding end of life decisions, trying to prevent undue family stress, and a sense of security knowing that things are in place to care for the supported decision-maker.

From the perspective of the supported decision-maker, entrusting their rights to another individual can be both scary and empowering. Participants expressed that knowing they are not leaving any loose ends for their family is comforting. Creating a representation agreement was viewed as a proactive step in controlling future care decisions.

By and large representatives understood the weight of this obligation and also felt honored to be a part of the process. It was noted many times that the process of creating an agreement was difficult, expensive and confusing. Many participants were proud and relieved to have completed a representation agreement.

 

e. Representation Agreements and Authority 

Valerie is a supported decision-maker for her daughter, Hazel, who has Down’s Syndrome. When Valerie heard about using representation agreements for supported decision-making in British Columbia, she thought this kind of document would be a great vehicle for supporting Hazel’s significant independence, while still allowing her to jump in to help Hazel communicate her wishes when people in authority failed to listen to her views. She had learned from personal experience that service providers often did not respect Hazel’s insights into her own experience and needs, and doubted her judgement. Hazel’s aunt Joan was also named as supported decision-maker. Hazel and Joan were very close, and sometimes lately Valerie had to be out of town for work, and was not available to respond to issues right away.

The representation agreement worked very well with people who knew the family well, such as teachers and social workers. However, when problems arose with Hazel’s welfare cheque, Valerie and Joan found that due to frequent staff changes, few front line staff knew Hazel’s situation. Few of them understood what a representation agreement was, and they were all reluctant to talk to Joan or Valerie until they came to the office in person to sign new Ministry forms. This meant that in practice helping Hazel out proved challenging and frustrating.

One day, Hazel was injured in a car accident. She was taken to emergency. The accident happened when her mother was out of town. The health care staff on duty did not know what a representation agreement was. Joan and Hazel had to spend a lot of time explaining supported decision-making to hospital staff, which delayed Hazel’s care. When staff finally agreed to talk to Joan, instead of Hazel’s estranged father, they still had a hard time accommodating Joan and Hazel’s slow and interactive decision-making process. The busy staff tried to rush Hazel, which made her anxious and less able to problem-solve.

Many participants expressed frustration regarding dealing with social services, care home, hospital and healthcare staff. Several common experiences emerged in this vein.

Participants who were in interaction with the BC Ministry of Social Development felt that representation agreements were not dependable. It was noted that the Ministry requires that designated decision-makers have separate authorization under a form specific to the department. Participants did not understand why this one Ministry in particular does not honour representation agreements, and were frustrated at not being able to help their supported decision-maker within this area.

The second theme that emerged was disrespect by hospital, healthcare and care home staff. Representatives described many situations where the supported decision-maker was ill or required extra care, and they would try their best to support them by learning about their often complex medical condition. Hospital and healthcare staff were often too busy to explain treatment options or medications to both the supported decision-maker and their representative. As a result, participants felt overwhelmed and uneasy about the care provided for their loved ones.

Recognition of the document within health and social service sectors varied widely. Participants described that some organizations would take the word of the representative and would not require actually seeing a signed agreement. Others reported they are consistently required to show their agreement, and in some situations describe and provide education about what a representation agreement meant in terms of rights and responsibilities. In the health care field, reception of representation agreements seemed to vary depending on health authority, hospital and staff member.

Participants also described situations where medical and care staff were uninformed of representation agreements. When this situation occurred representatives would go to great lengths to describe to staff the legal weight, their rights as a representative and implications that the document entailed—often to varying results. Participants were frustrated that they had put in considerable effort to create a legal document that some hospital and healthcare staff were not knowledgeable. They felt that often staff did not listen to them when they tried to explain that they were legally appointed to help the supported decision-maker.

Representatives also described situations where they would act on behalf of the supported decision-maker without using or showing the representation agreement. Overall representation agreements are used in hospital and healthcare settings inconsistently.

f. Levers to Better Support the Decision-making Process

Participants were asked what would better support their decision making process. Common themes identified were accessibility, affordability and respect. Participants noted that finding information about representation agreements was a challenging task and agreed that the process of setting up an agreement should be made easier. This was particularly noted by older participants who may not be comfortable using the Internet to access online supports to create a representation agreement.

The expenses involved in setting up an agreement were identified as a barrier. Some participants wanted to set up an agreement by themselves but were overwhelmed with the process and so sought legal help. This legal assistance was a financial expense that not all participants could afford. It was also noted that people with a disability may not be able to work and so have less disposable income to seek help creating an agreement with a lawyer.

g. Education and Support of Representatives

Representatives described the pressure that is put on them to make decisions on behalf of another person. Participants noted that when creating an agreement, it would be helpful to have specific case scenarios outlined with how the supported decision-maker would like the representative to act.

In our sample, supported decision-makers said they were aware of their rights and stated that they understood their agreement very well. Representatives were said they were aware of their rights. However, descriptions and definitions of supported decision-making provided by participants—notions of making decisions on behalf of another adult—suggest a substitute decision-making approach.

h. Participant Attentions and Concerns 

Although participants were generally pleased with their own agreement, there was also a concern for the potential that representation agreements can be used inappropriately. It was questioned how the supported decision-maker is deemed to be legally capable to create an agreement. The notion of informed consent, and the ability for a supported decision-maker to entrust another person when they may not be able to understand the ramifications is central. There were also concerns that a representative may bully a supported decision-maker into signing an agreement so they may take advantage of them financially. Participants wanted to know what checks were in place to prevent abuse, financial or otherwise.

Participants stated that their agreement was important to them because it helped provide clarity and support to their decision-making process. It was comforting for both representatives and extended family to know the wishes of the supported decision-maker would be followed when the adult was no longer able to make decisions for him or herself. Supported decision-makers were also pleased that their wishes are being looked after and their family will not be left to make decisions unadvised.

Participants noted that it is important for people to know representation agreements can be a powerful tool. Difficulties arise when health and social service workers do not respect the agreement. It is not easy to be a representative and there will be difficult decisions to make, and yet, it is also a huge honour to be entrusted to act on the behalf of another person.  Representation agreements are seen as legally binding, yet fragile, documents, that are helpful only in as much as they are respected.