A. Introduction and scope of investigation
The informant interviews yielded substantial information relating to the practical operations of personal support networks. The discussion below summarizes the interview results dividing them into four themes: personal support network creation; decision-making; interactions with third parties; and who is using personal support networks. In some instances the information obtained through interviews is supplemented with documents that informants provided, or with information from organization websites and published materials.
B. Personal support network creation
1. Identifying members
Every informant said the core requirement for membership in a personal support network is either a genuine relationship with the supported person, or a commitment to creating one. Indeed, a common theme across all personal support networks was ‘friendship’. People involved in networks, whether in a personal or professional capacity, consistently identified as the most important factor that members know and understand the supported person well, and be committed to a trusting and respectful relationship (and in some cases, to spending time with the person). One informant referred to this as requiring friendship in the most profound sense. Several also spoke about the need for a shared philosophy, and one emphasized that members must view the supported person as an equal. A man supported by an Aroha entity states (in his ‘blog’): “The most important qualifications for being director of my Aroha are: knowing me, listening to me, caring about what matters to me, and sharing time and interests with me.”
Some informants said that it can be useful to include people with a range of ages and perspectives. Several noted the need to guard against the tendency of some parents to choose members who can be their friends, rather than friends to their son or daughter. Without exception, informants speaking about incorporated personal support networks said that the supported person should ideally be a director of his or her own network.
2. Family members
Several informants spoke about the appropriateness of having a personal support network comprised only of family members. Generally, people said that it is better to have some members who are not family members, as they will bring different perspectives to the group, and will be disinterested in any family issues (such as inheritance) that might arise. However, informants had different views as to whether having non-family members should be a firm requirement. Some said there is a place for networks comprised only of family. On the other hand, a facilitator said we must distinguish between “family” and “support networks” as by definition the latter bring into play a broader group of people. Another informant, who is a parent and facilitator, said that it is important to have non-family members in the network because it is too easy for parents to interpret their sons’ and daughters’ expressions in particular ways, effectively ‘putting words in their mouths’. She said having people who know the person from different perspectives can provide balance. Two lawyers commented from a safeguards perspective; they worried that having only family members present without ‘outsiders looking in’ might increase the risk of members imposing rather that supporting decisions out of a desire to (over) protect.
3. Network size
Informants indicated an enormous range in network size. One person referred to a “network” with one active member. Another knew of a network with 25 to 30 people that met regularly. The Vela Microboard model requires a minimum of five people, and recommends that boards have between five and eight directors (including the supported person). The Ontario Adult Autism Research and Support Network recommends that people creating Aroha entities have as directors the focus person and four to five others “of different ages, abilities, and interests.”
4. Skill sets
Informants also had different views about the relevance of particular skill sets. Two informants (both professionals who do work relating to personal support networks, one in Ontario and one in British Columbia) suggested that those setting up incorporated entities might seek out a lawyer or a person with budgeting experience, while persons forming less formal personal support networks might favour people close in age and temperament to the supported person. In other words, a network intended to play more of a social role, and a Microboard that is receiving funds and acting as employer, might be comprised of different people. On the other hand, an informant from Vela said that in Microboards also, members should be chosen based on the quality of the relationship, as any necessary skills can be learned. An Ontario informant agreed, saying that particular skill sets like bookkeeping and accounting are helpful but not crucial. She again emphasized that the most important thing is having people who really know the person and will be a friend.
5. Geographic proximity
Not all personal support network members live in geographic proximity to the supported person. A parent noted that the members of her son’s personal support network live across Canada, and that they don’t see this as a problem; all of the members know her son well and are committed to him, even if they don’t see him often. Another parent said that members should sometimes be physically present. A facilitator agreed, saying that if a member is physically present only once or twice a year they will have difficulty understanding what is happening. She said many people come to personal support networks with a variety of preconceptions about who a person is and what they need. Distance, in this informant’s view, can exacerbate this problem and make it harder for the member to learn good discernment as to what a person truly needs and wants.
6. People in paid relationships
With the exception of one informant, everyone who spoke about network membership said that members should not be in any formal or paid relationship with the supported person. Some spoke about the potential for a conflict of interest. Others emphasized the importance of the network flowing from ‘natural supports’ that can be contrasted with (and be a buffer against) agency supports. One informant took the position that it can be good to include as members people in paid relationships with the supported person. While she recognized some of the risks of this approach, and that paid people are not the same as ‘friends’, she said having them present helps them to understand what is needed to support ‘a good life’ for the person, and allows them to implement decisions with greater enthusiasm. One informant observed that in the PLAN model, people often include as network members former support workers, and that this can work very well.
7. Process for establishing a network
Informants generally recognized that personal support networks can be created in a variety of ways, and that some people start with many people in their lives, while others are more isolated and require more support. Thus, while some families may create networks entirely informally and independently, others seek out the assistance of an organization such as PLAN or of an independent facilitator. Families in British Columbia who want assistance creating an incorporated network have access to several organizations, of which Vela is most prominent. While there is no Ontario organization providing systematic support for incorporated networks, the Ontario Adult Autism Research and Support Network provides some information and guidance on its website (and there is also a published guide with information and sample agreements), and some people hire a lawyer to assist with the process.
Facilitators take different approaches to finding network members. PLAN’s approach is to hire a “Community Connector” who looks for potential network members based on previous relationships among family, friends, neighbours and others, and works to identify opportunities to meet new people. PLAN materials emphasizes that this is about friendship, which “takes chemistry and time”. An independent facilitator explained that she tries to develop the initial list of potential members with the supported person, and then takes it to the family for negotiation. She sometimes begins with a person’s photograph book, going through it with the person and asking him or her to identify people. She said families are often surprised by the initial list (and skeptical that people will help) but that this can yield good results. This facilitator also described an initial process of meetings to bring potential members together, which might include social events like ‘pot luck’ dinners to gauge interest and comfort levels. Like PLAN, she emphasized that this process takes time, and that networks should ideally not be born from crisis – rather, people should begin creating their networks early, giving them time to become strong.
Every informant who spoke to the issue agreed that having access to professional assistance (whether through an organization or an independent professional) can be helpful, particularly for people who are isolated. However, not everyone viewed this as equally important. On the one hand were people who said that facilitation is essential. A parent said that creating a personal support network is extremely challenging, and that without a facilitator’s help it is just too hard. She said parents often need help getting over the barriers – for example, the fear of asking others for help, and of ‘letting go’. In a similar vein, an independent facilitator spoke about how difficult it can be for parents to give up control. She also emphasized that personal support networks are fragile and that facilitators can help with the constant tending that is required, particularly in their early stages.
At the other end of the spectrum, an informant in British Columbia expressed wariness about overly ‘professionalizing’ personal support networks. She took the position that if we had good education and supports, and legal tools like British Columbia’s representation agreements, people would seldom need professionals. In her view it is the current ‘systems’ that discourage the natural formation of personal support networks. Other informants took a position somewhere in between, to the effect that facilitation is a useful resource that should be made available to those who need or want it.
8. Role of the supported person in establishing the network
It is usually the family that initiates the personal support network. As one person explained, occasionally the interest comes from the focus person, but usually not; most people don’t know what these are until they are introduced to the idea. On the other hand, the man around whom the first Aroha entity was created explains that the impetus for his Aroha was his anxiety about what would happen after his parents were gone. His parents reportedly learned about and adapted the Microboard model in response to his concerns.
Whatever the impetus, the supported person might have varying levels of ability to agree or consent to the network’s creation. One informant, a facilitator, said that consent is essential, as there is risk inherent in opening one’s most private details to group discussion; while this can provide support, it also brings a measure of accountability for decisions because the members are now ‘watching’. She explained that before setting up a new network, she takes the focus person to another person’s support network to help them understand what a network entails. She also observes new networks closely for the first six months to a year to ensure that it is still working well for the person.
A lawyer observed that issues of legal capacity are rarely raised even in incorporated networks. However, he said that person must, at a minimum, understand in a general way what is being done (for instance, family members might explain, “we’re creating an organization to support you”). On the other hand, one informant said that networks might appropriately be formed for persons who do not (at least initially) want one. She said that some people require gradual introduction to the idea of a support network because, perhaps, they don’t like the idea of people talking about them. It might be that members gather and the supported person initially does not participate, but later becomes comfortable with the process.
With respect to selecting network members, every informant who spoke to the issue said that the supported person should be involved as much as possible. One person, a parent, said that the supported person must choose members, and cautioned that family members must be very careful not to impose their preferences about network membership. She emphasized that the focus person may have views that diverge from those of family members, and they may specifically want to ensure the presence of non-family members. Thus, in her view, family members must avoid being overly protective or prescriptive about the network’s form, and must allow the supported person as much direction as possible. Other informants pointed out that many people are not able to ‘choose’ network members, but that it is possible to discern a person’s comfort level in the presence of potential members.
9. Network structures and degrees of formality
People create networks with different degrees of formality. At one end of the spectrum are Vela Microboards, which must comply with British Columbia’s not-for-profits legislation and the rules set by Vela. At the other end of the formality spectrum are very informal circles of support. For instance, an independent facilitator in Ontario said she is cautious about recommending “circles” in any defined sense, as these often don’t work, either for the supported person or for members. She said that expecting a group of people to come together on a regular basis is often unrealistic, and many supported persons don’t feel comfortable in groups in any event. She suggested that a better approach can be to have a larger network as well as a number of small circles, within that larger group, that can attend to particular kinds of decisions. Other issues might also get worked out one-on-one over the telephone, and then discussed with the supported person in private. She also suggested that some feel more comfortable when group meetings are blended with social occasions that put the supported person at the center. Many other informants also talked about the value of flexibility in network membership and functioning.
Some people have several intersecting personal support networks with different purposes. For instance, in the Aroha model in Ontario, the incorporated network (the Aroha) is seen as the core, equipped with legal powers, of a larger circle of fiends. In British Columbia some people reportedly have both a Vela Microboard and a PLAN support network.
C. Decision-making
It is hard to really get inside decision-making. This is particularly so without having personally observed network decision-making processes or communicated with the supported persons. Many people involved in personal support networks clearly have a strong commitment to principles of supported decision-making. At the same time, beyond the articulation of principle, it difficult to know what exactly people understand supported decision-making to require; how they implement it; and what is the experience of the supported person. Moreover, to a large extent, the parents and facilitators with whom I spoke are leading the charge around supported decision-making and personal support networks. I do not know how many others in British Columbia and Ontario are setting up personal support networks without this kind of commitment to philosophy and practice. This is, in part, a limitation born of the research methods used for this study; a ‘call’ to people to speak about personal support networks and supported decision-making will yield people who have thought about these two concepts as linked. While several informants alluded to ‘other’ personal support networks that are not engaged – or intending to engage – in supported decision-making, the recruitment phase of this project did not lead to the latter people coming forward.
1. Do personal support networks make decisions and if so what kind?
Personal support networks clearly participate in a range of decision-making. There is variability in the kinds of decisions made; the roles played by network members; the principles applied; and the conduct and legal positions of networks vis-à-vis third parties. (And, some informants did not think of their networks as engaged in “decision-making”, preferring the language of “planning”.) In general, however, the informants agreed that networks are (or could be) involved in decisions relating to some or all of: where the person should live; whether the person should have a roommate; food; other matters relating to the home; budgeting; romantic and other personal relationships; what kinds of funding should be applied for; services; relationships with service workers; whether and when to initiate advocacy; work and volunteer life; health care; planning for when parents are gone; and any other issue that might arise in daily life or long-range planning.
There were important caveats. One informant, a parent, cautioned that support networks should not, and should not be seen to, be making decisions all the time. She emphasized that most people can live quite competently with supports and don’t need a network to be constantly managing decisions. In her view, the support network should view its decision-making role as limited to ‘major’ decisions, relating to issues such as where to live, and health care. As these major issues had not yet arisen in her son’s network, it was mainly providing advice, which she considers to be the appropriate role for a network most of the time.
Another informant had similar views, stating that networks should be concerned with the broad aspects of a person’s life – for instance, their goals and objectives – rather than the day-to-day. Another, a facilitator, said decisions are about ‘what is a meaningful day’. For instance, should a particular support worker be hired? Should the person work as a volunteer? A lawyer noted that the extent to which a network is helping with ‘soft’ decisions (such as helping with appointments) might depend on whether the person is also being supported by an agency. He observed that some networks choose to work with agencies, while others endeavour to operate as much as possible outside the agency system. It was also apparent that the extent of a network’s participation in decision-making might depend on the degree to which a parent is actively involved. For instance, the parent who said her son’s network has not yet needed to make weighty decisions recognized that it will need to play a larger role after she is gone.
Another theme was privacy, and the idea that some decisions might appropriately be kept outside the personal support network. For instance, an informant noted that a Microboard might support health care decisions, but that often these kinds of deeply personal decisions are instead made with close family members. She explained that Vela recommends representation agreements for health care purposes. Another informant, a facilitator, emphasized that not everything is (or should be) disclosed to a personal support network. The supported individual may legitimately choose to keep some matters private. Other matters might be raised within a smaller subset of the network. For instance, questions about personal relationships or sex might arise and be more comfortably talked about in a smaller group or one-on-one.
2. Decisions relating to the employer role
In addition to the day-to-day decisions described above, incorporated networks can (in British Columbia at least) directly receive funds earmarked for the supported individual and make decisions relating to services and workers. In Ontario, the ability of incorporated networks to directly receive funding as act as employer is less clear, but some groups have developed innovative ways to direct service provision (and some unincorporated networks may be directing services as well). The ways in which Ontario networks are doing this are discussed below, in section ‘D – relationships with third parties’.
3. Decision-making processes and principles
How do decisions get made? What is the role of the supported person? Every informant who had directly participated in a personal support network, whether in a personal or professional role, said that the network was engaged in supported decision-making. At the same time, a number of informants expressed skepticism about whether other personal support networks necessarily do this, or do this well. Also while some networks had consciously elaborated a philosophy or set of principles related to supported decision-making, others were more vague about what supported decision-making entails. There is no single approach to (supported or other) decision-making, and decision-making processes are sometimes hard to describe. However, this section sets out some of the approaches to decision-making that were described by informants.
A parent’s perspective: An unincorporated network in Ontario
A parent in Ontario explained that her son doesn’t speak and cannot conceive of what a ‘decision’ is on a conceptual level, but that he has likes and dislikes like everyone and can express what he wants as situations arise. In this way, he can indicate his understanding. The network views its role as being to provide advice and to interpret the hundreds of decisions her son makes every day through expressions of his will. She said that the network knows her son very well and, like family, they know when something is right or wrong for him.
This informant explained that there are no formal roles governing network decision-making, but that it operates on the principle that decisions affecting her son’s life must do no harm, and hopefully, be to his benefit. The network also has a voluntary document that states that they will employ supported decision-making in accordance with Article 12 of the UN Convention on the Rights of Persons with Disabilities. It provides that they will treat her son “as an equal” and will “supply for him whatever is missing in his own capacity to maintain his own quality of life within the means, financial or otherwise, that are available to him”. It also describes the network as “the embodiment” of her son’s “supported decision-making capacity”. At the same time, this parent recognized that under current law, some of this is aspirational. For instance, when dealing with third parties, the network has no authority; rather, she participates personally (though often informally) or her son must act independently.
A parent’s perspective: An Ontario Aroha entity
Another parent explained that the entire approach taken by her son’s Aroha entity is grounded in the potential that he has shown for making good decisions. Her son and the Aroha directors start from the position that he has demonstrated capacity, but needs others to help him to carry out his wishes. Thus, while the Aroha has other purposes as well, supported decision-making is fundamental to what they do. This entails ensuring that her son’s voice comes first and that directors listen, respect what they hear, and commit to carrying out his wishes. She emphasized the presumption of competence, that people have different ways of communicating, and that people who do not speak may have remarkable levels of comprehension and expressive abilities if they have the right supports.
This Aroha entity has elaborated many of its decision-making principles in writing. First, as an incorporated entity, it has corporate by-laws and objects. A sample Aroha bylaw includes provisions stating that:
– the supported person has “asked trusted friends to help him to manage the supports and services he needs for a good life in his community”;
– the Aroha must “respond to the initiatives he expresses, and…ensure his wishes are heeded”;
– the Aroha will receive and manage funds “upon receiving the appropriate authority” from him and “at his direction”;
– directors must “understand and respect” his “life plan and priorities”; and
– “any new director must be well known and acceptable” to him.
The person at the center of this Aroha also has a written “supported decision-making agreement”, setting out relevant principles and providing at least moral authority for supported decision-making. A sample agreement includes:
– the names of the person(s) in the Aroha who will “support, guide, and/or represent the person in particular kinds of decisions”;
– the supported person’s statement: “I want the supporters to agree on their decisions. If there is a disagreement between the two supporters, there will be consultation among at least three supporters to make a decision that is acceptable to everyone present”;
– an appendix setting out an “expression of preferences”; and
– space to attach a Ulysses agreement, which a person may want to create for times when he or she cannot consent, such as medical emergencies.
Yet another written model agreement – an “Aroha Agreement” – states, among other things, that the directors will ensure that the supported person “has ways to understand options and to make decisions about his life, using whatever communication works for him and maintaining his supported decision-making agreement”.
An independent facilitator’s perspective: Ontario personal support networks
An independent facilitator emphasized that not all personal support networks are providing supported decision-making. Rather, some networks are set up for other purposes, such as friendship. She said that supported decision-making is appropriate for people at all levels of capacity, but that if this is to be an objective, it must be articulated from the start. Moreover, building this process takes time. For instance, some people do not speak or are limited to ‘yes’/’no’ answers. Network members must learn to understand the person and the ways in which he or she expresses will and intent. This may require modeling, as most people do not start with a presumption of capacity, and many people do not know how to listen well. The informant also explained that there must be a willingness on the part of the family to accept a shift in power, as the family will not carry all the decisions as it might have before. To help networks develop their capacities for supported decision-making, this facilitator might use tools such as social occasions; informal spaces for relationship building; hospitality; and structured planning processes. She described how, in the right circumstances, it is possible to observe the person “relaxing into the wisdom of the group”.
This informant said the network must support the person to make his or her own decisions to the extent possible, always guarding against “best interests” thinking. She emphasized that this can be very challenging, especially when the network is created at a time of crisis. She also talked about the importance of network members allowing the supported person to make mistakes and to make choices counter to the network’s advice. The network’s role is not to tell the person what to do, but rather to help the person understand the ways in which he or she is vulnerable, and options for navigating those vulnerabilities. She clarified that none of the people she works with can make autonomous decisions without supports, as they don’t have the critical analysis skills to understand their jeopardies. But by bringing knowledge of the person’s vulnerabilities, the network can make it safer for the person to make decisions. On the other hand, this informant acknowledged that there might also be times when a person cannot decide for him or herself.
Finally, this informant indicated that the networks she works with do not generally follow any written agreement or statement of decision-making principles, but that facilitation is a safeguard. She said a facilitator can ensure that the network is set up for the ‘right’ reasons; that questions are asked appropriately; that the group remains focused on the supported person; and that members are not imposing their own views on the person.
A second facilitator perspective: Ontario personal support networks
Another person who had worked in a facilitator role appeared to take a looser approach to supported decision-making. She emphasized that networks are providing supported decision-making, but that this is not always done in a formal circle setting. Like the other informants, she explained that network members must listen deeply to really understand what the focus person is trying to say. However, she said that the ‘messiness’ of circles doesn’t always get talked about. In her view, what is really needed is a core group of three or four people, who might be a subset of a larger group, who know the person well enough to deal with important decisions as they arise. They can bring these decisions to the larger group for additional input and perspectives, but consensus (which she viewed as unrealistic) should not be required in her view. She also suggested that many decisions are, in any event, too personal to be aired in a group setting.
With respect to the role of the supported person, this informant said that the person is always the center of decision-making, but that this does not necessarily require him or her to be physically present or engaged at the time that the issue is discussed. For instance, in a discussion about a possible medical procedure, the supported person might not engage, or might fall asleep. In these situations the task of the network is to put themselves in the shoes of the person as well as they can and to think about what the different options would mean for him or her. This might also involve a preliminary conversation about how to discern what the person thinks and wants. If the supported person was not present, or was not engaged in the discussion, a family member might later talk to him or her on a one-on-basis.
Like the previous facilitator, this informant said the networks she works with do not usually have written principles for supported decision-making, but she considered facilitation to be a safeguard. In her experience it was the families who asked her to be present, as they wanted an outside person who would challenge them if they departed from the principles of supported decision-making. She said this kind of safeguard can be important, as families sometimes slip away from supported decision-making principles in the interests of ‘getting the job done’.
A professional / director’s perspective: Vela Microboards in British Columbia
An informant who was employed by Vela and had also sat on a Microboard in a personal capacity said that Vela Microboards are intended to provide a forum for supported decision-making. She acknowledged that there are likely Microboards that don’t do supported decision-making, or don’t do it well, but said Vela facilitators speak with directors about supported decision-making early on in the process. Ongoing Vela involvement in Microboards is voluntary, meaning that there is no current accounting of decision-making processes across the more than 900 Microboards that have been established in British Columbia. However, the informant indicated that the Microboard with which she had direct experience was following the intended philosophy.
One of the stated roles of Vela Microboard directors is to “help the individual plan his/her life”. Another principle is: “All people are assumed to have the capacity for self-determination”, which capacity is to be “acknowledged, respected, and demonstrated in all of the dealings of the Microboard”. The informant explained that in the board she sat on they were not concerned with formal capacity – rather, they tried to understand how the person indicates her preferences, and how best to support her in understanding the consequences of her decisions. She said Vela facilitators teach this kind of lens – that is, of always asking how to maximize the person’s capacity – to new directors. If the person can’t articulate what they want, directors look to what the person has done in the past and other contextual information to help them make the best choice on the person’s behalf.
This informant also emphasized that the Microboard belongs to the supported person. She recalled a man who felt his Microboard wasn’t listening to him. She reminded him that he could fire his board – that this was his Microboard. She said the man subsequently confronted the directors and that they agreed to listen better.
Microboards can specify some of their decision-making principles in their constitutions and by-laws. Sample constitutions provided by Vela include statements:
– that the purpose of the society is “to solely meet the needs of” the person;
– that each society member must “make a personal commitment to establishing and maintaining a relationship with” the person; and
– indicating that the society will “plan, acquire, and/or deliver all recreational, educational, vocational, social and residential programs”, specifying the involvement of the supported person in varying ways, depending on his or her level of ability. Thus, the board might do this:
– “as indicated by” the person and regarding the “programs that s/he demonstrates need or interest in developing”;
– “with” the person, and “with consideration given to his/her interest[s] and strengths”; or
– it might simply plan (without reference to the focus person’s involvement) “with consistent respect for her wishes, interests and strengths”.
This informant also viewed facilitation as important to the decision-making process. She explained that supported decision-making represents a paradigm shift for many families, who are not accustomed to truly respecting their relative’s wishes. With respect to the source of facilitation supports, she thought these could be provided by an organization or an independent facilitator (provided they have the skills to provide guidance on both the philosophical and practical matters like payroll) but that facilitation and services should never be provided by the same organization.
Other themes and perspectives relating to decision-making
Informants raised a variety of other themes relating to decision-making processes. One was the reality of varying levels of ability to participate in decision-making. An Ontario informant observed that directors must involve the person to the extent possible, and that irrespective of the person’s level of participation, directors must have a genuine and supportive relationship with him or her, but that some persons will not be able to provide any actual input into decision-making. Another informant who is a parent and independent facilitator explained that supported decision-making is not as ‘black and white’ as following the person’s wishes. She said her daughter’s network follows a communal process that always keeps her daughter at the center, but that in addition to considering what she wants, they will consider her needs and what, from past experiences, makes her happy. She also acknowledged that in interpreting preferences, members will not ‘get it right’ all of the time.
Some informants spoke about the approach to conflict or disagreement between the network and the supported person. Generally, people said that ideally the supported person is never ‘overruled’. However, most informants acknowledged that this will depend on the situation and the person’s ability and understanding. One informant, a parent, said that if the members of her son’s Aroha do not agree, they wait and try to work to a solution; they do not act counter to her son’s wishes unless it is an emergency, or he is determined to lack capacity (e.g., for medical reasons). Others said that the weight given the supported person’s preferences might vary with the riskiness of the decision and the person’s comprehension of that risk.
Indeed, safety and risk in general were common themes. Several people said that where safety is at issue – for example, a medical procedure or a particular living arrangement – the network must mitigate the risk, but that it should do so in a way that is as respectful as possible of the person’s wishes. This could lead to a compromise decision; for instance, a person wanting to live alone might be allowed to do so on the condition that a ‘panic button’ is installed for emergencies. A facilitator in Ontario emphasized that parents sometimes need guidance on how to support their son or daughter’s autonomy and right to take risks. On the other hand, a person who was resisting a medical procedure that he didn’t fully understand might be required to undergo the procedure if the network thought that the consequences of not having it would be even more unbearable for him. In still other situations, a network might come to understand a decision to forgo a life-saving medical procedure as the authentic choice of the individual. Indeed, an informant in British Columbia talked about the powerful role that personal networks can have in supporting people through healthcare decisions and, in some cases, helping them to have a good death.
D. Relationships with third parties
For a network to move beyond ‘advice-giving’ to providing meaningful supports in the outside world, it must have some ability to interact with third parties on the person’s behalf. The legal status of a supporter would ordinarily come from a supported decision-making law. The section below examines the extent to which different kinds of networks in Ontario and British Columbia are already interacting with government and private third parties, focusing in particular on network relationships with (i) government funders and service workers; and (ii) private third parties such as banks and health care providers.
1. Government funding & the employer role
British Columbia
The Wetherows (who innovated the first Microboards in Manitoba) have suggested that the appropriate relationship between a Microboard and government is one in which “[t]he Microboard has the same standing as a provider agency – it is a provider agency, for one person”. This is essentially the model that has been adopted in British Columbia, where a number of government ministries have recognized the authority of Microboards to receive and manage a person’s individualized funds and to act as employer of record for service workers. Funding may come, for example, from the Ministry of Children and Family Development, Community Living BC, the Ministry of Health, or from a trust or a settlement. Where a ministry accepts a particular Microboard as entitled to receive funding, it will enter into a contract with the Microboard (similar to the contracts it uses for agencies) stating, among things, that the Microboard is the employer of record. Service workers, in turn, accept the Microboard’s authority to act as employer by virtue of government recognition of this role.
A Microboard that is receiving funds and acting as employer is responsible for complying with the Ministry contract and all laws and common law obligations relating to the employer role, such as employment standards, human rights, workplace safety, and tax laws. Directors may also need to understand principles relating to contract, budgeting, and bookkeeping and payroll. Vela recommends that Microboards purchase directors’ and officers’ liability insurance to minimize individual risk, and provides guidance to new Microboard members on how to minimize risk of liability.
Ontario: Incorporated networks
The ability of incorporated networks to receive and manage individualized funds is much less clear in Ontario. A lawyer indicated that he has set up ‘Microboard’-type entities (or “self-directed support organizations”) for Ontarians seeking to provide for long-term management of individualized funding. However, there is no Ontario law or policy that addresses the ability of incorporated networks to play this role. Indeed, notwithstanding this lawyer’s experience, the informant interviews indicate that there is confusion and a lack of information about whether incorporated networks are eligible to receive funds in Ontario. Several informants said there is no reason to incorporate a support network in Ontario because the government will not allow it to receive funding.
Among Ontario networks that do receive and manage funding, they are apparently doing so as a result of creative arrangements with transfer payment agencies supportive of their objectives. The lawyer noted above explained that some transfer payment agencies agree to flow funds earmarked for individuals to ‘microboard’-type networks. However, because there are no applicable laws or policies, any safeguards (for instance, related to use of funds or reporting) must be set out in the individual agency’s policies, or by contract between the agency and the network. Informants whose networks directly receive funds confirmed this, also highlighting that the lack of official policy means they are sometimes required to piece together funding from a variety of sources, only some of which might flow through the network.
For example, an Aroha entity has an arrangement with a transfer payment agency pursuant to which the agency directs funds earmarked for the supported person to the Aroha, and the Aroha provides the agency with monthly reports. On the other hand, this person also receives some Passport funding, which must be delivered directly to him (his mother co-signs in an informal capacity), as the Aroha does not have authority to receive these funds. The Aroha entity then uses the funds available to it to employ personal support workers.
In another example, a group of families has created several layers of structures to support their sons and daughters with disabilities. First, there is an incorporated support network that serves seven individuals and their families. Second, each individual has an unincorporated support circle. Funding flows to each individual in their family and circle on a monthly basis in at least two different ways: (1) The larger network has a contractual arrangement with a transfer payment agency that allows it to receive funding intended for the seven individuals, which it in turn allocates to each individual within their circle. (2) The network has another contract with the local Passport office granting it authority to receive Passport funds for specified individuals, which it again allocates among families. Families use these funds to purchase supports directly, using simple individual service contracts. Decisions relating to services and supports are made in the context of each person’s support circle.
As in British Columbia, a person or corporate body that is acting as employer is responsible for complying with the laws (such as employment standards, human rights, contract, and tax) that relate to that role. In the context of an incorporated network, directors might receive some protection through directors’ and officers’ liability insurance.
Ontario: Unincorporated networks
Generally, when people want their networks to directly engage in funding and employment decisions, they seek incorporation. It is precisely the legal powers associated with being an incorporated entity that attracts some people to this model. On the other hand, an informant from a transfer payment agency in Ontario described an arrangement by which the agency receives the individualized funds for particular persons, and technically acts as employer, but takes direction on services and staffing issues from individuals’ support circles. She also said that a person and his or her support circle could choose to use the agency as ‘just the banker’, and to contract for services directly.
On the other hand, this informant appeared to refer to “support circles” and “family” somewhat interchangeably. For example, a sample Employment Agreement used by the agency states that “hiring decisions are made by the family and person who is supported” and does not expressly recognize the support circle. A parent whose son obtains services from this agency said that she makes decisions relating to staffing and services. However, she was confident that after she is gone the agency will take direction from her son’s support circle, and said the circle will develop protocols so that agency staff know whom to contact for particular decisions. She thought that this agency might be unique in having a policy of working directly with support circles.
2. Interactions with other third parties: Banks, health care providers, lawyers
Informants’ comments with respect to interactions with other third parties – such as doctors, lawyers, and bankers – were relatively consistent. In both British Columbia and Ontario, incorporated and unincorporated networks alike have no real authority in the eyes of these third parties. Neither banks, nor health care providers, nor lawyers, have any basis for accepting the authority of a personal support network member to represent the decisions of another. In British Columbia this is less significant given that a person can enter into an agreement under the Representation Agreement Act, giving named individuals (who could also be network members) legal status. However, in the absence of such an agreement in British Columbia, and in Ontario, personal support network members have no such authority.
For example, a parent in Ontario said that neither she nor others in her son’s personal support network have been able to help him open a personal bank account, as the bank requires a guardianship order or a power of attorney. Several Ontario informants said that personal support network members are often present during periods of hospitalization or other critical health care issues, but that medical decisions are generally made by family members included in the hierarchy of substitute decision makers in the Health Care Consent Act. An informant in British Columbia confirmed that Microboards do not have authority to make health care decisions and said that, in any event, a representation agreement is generally the better approach. A single exception surfaced in the interviews; a lawyer described a situation in which the personal support network of an Ontario woman, who did not have family, was able to petition the hospital to allow it to act as substitute decision-maker. This, however, was the exception to the rule.
Several informants described situations wherein third parties recognized an individual as legally capable when supported by his or her personal network. These cases represent more of an accommodation approach – that is, traditional legal capacity thresholds are applied, but with the understanding that a person might need assistance to reach that threshold. Thus, an informant explained that her son’s lawyer, bank, and doctors all accept that her son has capacity when supported by his Aroha entity. Legal documents are in his name, and his mother co-signs as a kind of informal guardian. An informant who works as a facilitator similarly referred to a number of individuals who have been considered by banks as capable for purposes of opening an RDSP, when supported by a personal support network. Another informant described a woman who has significant health issues and is supported in medical appointments by members of her support circle. The informant said that this woman makes her own decisions; however, she and her health care workers know that she is more comfortable and can make better decisions with supports.
None of this changes for incorporated networks. Microboards and their ilk have authority to enter into the kinds of arrangements that are available to any corporate entity. For example, they can purchase or lease property, open corporate bank accounts, enter into contracts (e.g., with service providers), and purchase insurance. However, third parties do not recognize them as having authority to represent or ‘act’ for a supported person.
E. Who is using personal support networks?
Most informants did not know how many in Canada have established personal support networks, but thought that people with networks are likely in the minority. Some people thought there might be growing interest in opportunities for network building. An informant said roughly 50 people have sought out information about Aroha entities, but did not know how many have gone on to create them. A facilitator said that people using support circles are still few in number but that these numbers might grow alongside the facilitation movement. A lawyer said that while incorporated networks are still uncommon in Ontario, many people are seeking out information. He speculated that their usage might increase as parents get older and seek out ways to ensure continuity in funding and services for their sons and daughters. Another facilitator said that there is a lot of ‘talk’ about creating circles and networks but that families often don’t carry through, either because they have difficulty giving up control, or because they think there aren’t enough people who will help. Another informant, a parent and independent facilitator, emphasized that many parents are reluctant to create personal support networks because their time is already overburdened and social network creation is a foreign concept. On the other hand, Microboards appear to be very well established in British Columbia. An informant indicated that about 900 have been created in total and that over half of the boards that exist today were created within the last four years. She also suggested that there is substantial overseas interest in Microboards.
Nearly all of the personal support networks described by informants were created for persons with developmental disabilities. Indeed, most of the informants for this study came from this perspective. Two exceptions surfaced in British Columbia: An informant said that approximately 55% of Vela Microboards are supporting persons with developmental disabilities, but that the other 45% are supporting persons with other disabilities. Another informant said that perhaps 10 per cent of clients supported by PLAN are seeking support for a mental health disability.
Several informants opined that personal support networks could be a useful resource for any vulnerable adult (and one person emphasized that they are important for everyone, whether or not they are ‘vulnerable’). On the other hand, some cautioned that personal support networks might not work for everyone. For instance, one informant observed that people with fluctuating capacity due to mental illness might prefer a power of attorney approach. Another suggested that older adults might not be drawn to the personal support network model, either because they don’t have enough people in their lives who can be involved to the required degree, or because they already do have these supports, informally, within their family.
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