VII. Are Personal Support Networks Providing Supported Decision-Making?

A.    What is supported decision-making?

While there is no agreed-upon definition of supported decision-making, there are common themes. As the LCO points out, supported decision-making models generally aim to enable persons to “exercise control over decisions that affect them through supports… without any loss of legal capacity.  Indeed, a central intent of supported decision-making is to avoid any assessment of capacity or label of incapacity.  And, relatedly, most models specify that the supported person retains legal responsibility for their decisions, and that those decisions are legally binding (a point returned to below).  Most definitions also emphasize that supported decision-making should take place within “relationships of trust and intimacy”.  Beyond this, however, there is more variability, particularly with respect to the degree of “control” or agency that the supported person must exercise, and the specific roles of supporters.

Some use the term “supported decision-making” broadly to encompass situations in which there is a process in place to discern the person’s preferences. Thus, the supported person is the legal decision-maker, “but is provided support from one or more persons who explain issues to the individual and, where necessary, interpret the individual’s words and behavior to determine his or her preferences”.  For example, Bach and Kerzner and the Coalition on Alternatives to Guardianship recommend a “will and preferences” approach that requires that the person be “able to express their will and preferences in a manner that at least one other person can understand”.  They suggest that supporters be subject to a standard of “best interpretation”, acknowledging that there may be disputes over how to interpret a person’s will and preferences.  They also argue that in some circumstances, the law should allow for individuals to have decision-making supporters appointed for them.

Other writers appear to impose a more stringent agency requirement, both with respect to establishing and ending the decision-making process (for instance, ensuring that the person has  “voluntarily entered into the arrangement”) and the process itself.   Thus, some argue that the person must enter the arrangement freely and with consent.  Others emphasize that the person must “actively participate in decision making” and be able to “terminate the relationship at any point in time”.  For instance, the Office of the Public Advocate in Victoria, Australia, states that “[c]onsultation, respect for a person’s wishes and the promotion of a person’s rights are not, of themselves, supported decision-making.”  Rather, “any supported decision-making arrangement must have the free agreement of the person”, and the person must be able to terminate the arrangement at any time.  Kohn, Blumenthal and Campbell also appear to be in this latter camp of writers when they specifically consider what would be required for personal support networks to qualify as supported decision-making:

To the extent that a circle of support helps a person understand various life choices and choose among them, or that a microboard is structured to allow the person with a disability to direct its actions (e.g., such as by having that individual serve as the President of the Board), both approaches can be mechanisms for implementing supported decision-making. By contrast, if the members of a micro-board or circle of support ultimately make decisions on behalf of the person with a disability—even if they consult with that person and consider the person’s wishes—then such arrangements should not be classified as supported decision-making.

These different definitions of supported decision-making reflect a tension. On the one hand, writers are aware of the need for clear indicia that a person is being empowered and permitted autonomy to “make decisions for themselves” rather than being coerced in the name of ‘supports’  On the other hand, many argue that supported decision-making mechanisms are most needed by people who do not meet traditional, or even more flexible, capacity standards and methods of participation. (For instance, some informants expressed concern that supported decision-making under British Columbia’s Representation Agreement Act, with its continued use of a capacity threshold, “leaves people out”.)

Finally, to assess whether personal support networks are providing “supported decision-making”, requires a position on what counts as ‘support’, and how narrowly we define the decision-making process. Bach and Kerzner argue that “decision-making supports” for the purpose of Article 12(3) of the CRPD should be interpreted to include “life planning supports” (such as the person directed planning and facilitation tools discussed above ); advocacy; and “relationship-building supports”, among other things.  For example, they observe that “the outcome of relationship-building supports is the development of relationships and support networks which can provide representational supports at some point in the future”.  This broad definition of “supports” would seem to require that all personal support networks be classified as supported decision-making because they are building relationships on which a person could draw in the future. The approach taken in this paper is, however, narrower. Recognizing that there may be many important background conditions for supported decision-making, to which networks might contribute, it nonetheless focuses on the more immediate process of decision-making at a particular time and place.

B.    Are personal support networks playing this role?

As noted above, every informant who was directly involved in a personal support network said his or her particular network was engaged in supported decision-making. At the same time, a significant theme among some informants was skepticism about whether all networks are providing supported decision-making, or at least, recognition that it might not be done uniformly well.
Some participants referred to personal support networks that are created without any intention of engaging in supported decision-making. For instance, a lawyer in Ontario said some families incorporate networks with administrative functions – such as managing funding – in mind. A lawyer in British Columbia said that he tries to talk to his clients about supported decision-making, but that sometimes people just want a result. An independent facilitator in Ontario said that that some networks are intended to address social ends, and do not make supported decision-making a central focus.
Others observed that networks and members intending to engage in supported decision-making have varying levels of skill and understanding, and that supporters may slip between supported and substitute decision-making. A lawyer said he was concerned that family members, while well meaning, sometimes favour safety and protection over autonomy and freedom. He cautioned that, without the necessary safeguards, giving sanctioned decision-making roles to networks could devolve into a means for families to reinforce each other and engage in substitute decision-making by another name.
Whether personal support networks are providing supported decision-making will obviously vary, both with one’s definition of supported decision-making, and the particular network under study. However, many of the personal networks discussed by informants are, at least on the broader definition of supported definition described above, apparently engaged in supported decision-making. The discussion below briefly analyses the professional and lay participants’ statements about network decision-making in the context of the following factors, drawn from definitions of supported decision-making: (i) concepts of capacity; (ii) the supported person’s consent to create the network; (iii) whether networks members are in relationships of trust and intimacy with the person; (iv) the supported person’s participation in decision-making processes; and (v) legal responsibility for decisions. As discussed above, the scope of this study was such that it can only provide some initial impressions. Further work could build on these findings, for instance, by asking the whether these processes are experienced as empowering.

1.    Concepts of capacity

Every informant who spoke to the issue rejected traditional concepts of capacity, consistent with principles of supported decision-making. Indeed, the most common sentiment was that everyone can benefit from personal support networks and supported decision-making. Where capacity was referred to, it was in statements to the effect that there must always be a presumption of capacity; that a network can help maximize, or “supply… whatever is missing” in, a person’s capacity; and that a person with capacity might need others to help him or her carry out wishes. One informant (whose son is generally recognized by third parties as having capacity with supports) said her son sometimes lacks legal capacity for medical reasons, and that in these situations it can be useful to pair supported decision-making with a Ulysses agreement. The majority of informants, however, preferred to avoid any context in which there might be a finding of legal incapacity.

2.    Entered into freely and with consent?

If one were to make it a strict requirement that a person ‘consent’ (following the conventional meaning of that term) to network formation, most of the networks described in this study would fall short. This is not surprising, as traditional ideas of consent go hand-in-hand with traditional legal capacity. Only one informant discussed a network in which the supported person expressly chose to enter into a network arrangement, and that person apparently met conventional capacity standards when supported. One other informant talked about a supported person ‘owning’ his Microboard such that he was free to terminate the arrangement should he wish. The other informants described approaches ranging from: ensuring that the person understands what is happening, to making sure the person is comfortable, to situations where a network might be created notwithstanding the person’s initial objections.

In general, as with decision-making principles more broadly, network members appear to involve the supported person as much as possible. Informants recognized that some people will not be able to ‘choose (or terminate) a network in the traditional sense, but took the position that people of all levels of abilities should benefit from personal support network arrangements. On the other hand, one informant cautioned that there can be slippage or confusion over who is choosing to create a network. This came through in several interviews, in which it was not clear whether the impetus for creating a network was the wishes of the supported person or his or her parents.

3.    Relationships of trust and intimacy

Without exception, informants talked about the central importance of the network being comprised of people in relationships of trust and intimacy with the supported person. Some counseled vigilance to ensure people are chosen for the supported person and not the parents. Several also said relationships might vary with the purpose of the network (for instance, socializing versus hiring workers). Finally, some referred to other networks that might be set up without the real intention of being a personal support network. For instance, a network might be set up temporarily for personal planning purposes, with no intention of longevity. However, more than any other factor, the core focus on caring relationships was evident in every network in which informants had participated.

4.    Active participation in the decision-making process

Not every definition of supported decision-making requires the active participation of the supported person. Like the requirement that the person consent to enter into the arrangement, there is a tension between requiring a particular level of ability to participate, and making supported decision-making accessible. And, whether a personal support network is seen to engage in supported decision-making will often depend significantly on the position one takes on this agency-related factor.
In general, informants took the position that the supported person should be involved in decision-making as much as possible. Many people spoke in terms of keeping the person ‘at the center’ of the decision-making process rather than any particular degree or method of participation. Thus, for a person capable of actively participating through assisted communication, it was seen as essential that network members take direction from him. In other situations, the person might not be physically present for decision-making. One person spoke of decision-making as a communal or collective process. She emphasized that supported decision-making for her daughter does not necessarily entail following her wishes in every case; rather, the important thing is to have a group of people make decisions based on a deep understanding of who her daughter is.
Many of these networks would not meet Kohn, Blumenthal and Campbell’s requirement that the person “understand various life choices and choose among them” or that they “direct” the network’s actions.  On the other hand, many would meet the standard recommended by Bach and Kerzner and the Coalition on Alternatives to Guardianship, that the person be able to express their “will and preferences” in a manner that at least one other person can understand, subject to a standard of “best interpretation”. 

5.    Legal responsibility for decisions and the corporate decision-making agent

Decision-making rights and legal responsibility for decisions are usually corollaries. This makes the question of who is the decision-making agent important. Indeed, this is important both for the decision-maker (who may be legally responsible in the event of, say, breach of a service contract), and for third parties who require clarity about who is the responsible legal agent.

Few of the informants had thought about the issue of legal responsibility for decisions. In unincorporated networks, decision-making responsibility was sometimes perceived to reside with the supported person’s family (even in the absence of any guardianship order or power or attorney). Incorporation, in turn, was often seen as a means of obtaining legal powers that might facilitate practical objectives like succession planning. Informants had not always reflected on the corollary, legal responsibility.

What, then, are the legal principles applicable to these networks, and what do these principles mean for concepts of supported decision-making? Generally, a legally responsible supported adult (i.e., who has not had his or her legal responsibility altered by, for instance, a guardianship order) will remain responsible for his or her decisions whether or not a network is providing support. Indeed, some view this maintaining of legal agency as integral to the very concept of supported decision-making.

On the other hand, where an incorporated network makes and implements decisions (for instance, to hire service workers or lease property) in its corporate capacity, it is legally responsible for these decisions. In these circumstances the network, not the person, is the decision-making agent. This is so because a corporate entity has the status of a legal person. As one plain-language guide puts it:

A legally incorporated organization is a separate legal entity, just like a real person. The Society’s existence does not depend on any one person remaining alive. Rather, the organization will “live” as long as it continues to meet the requirements set out by the provincial government. Consequently, an incorporated organization may enter contracts and/or sue other entities in its own corporate name. 

Thus, where a corporation has the legal authority to enter into a transaction (for instance, contracts with service workers or a residential lease), and it does so within this legal authority, it will be the legally responsible agent.

The fact of incorporation does not mean that a Microboard is the decision-making entity for all purposes. A Microboard will have the legal powers generally accorded at law and common law to corporations. A corporation has no legal authority to represent a person in health care (or banking, or lawyer’s office) settings. Personal decision-making for another is not a power granted to corporations. Thus, while Microboard members might give informal guidance relating to medical care (and there could be a debate as to what directors’ duties of care require in this context), the corporation is not a medical decision-making entity. In short, a corporation’s status as decision-making entity is coextensive with its legal powers. Incorporated networks in British Columbia are recognized in government policy as eligible to receive funding and hire workers in accordance with their contacts with the ministry and applicable laws. And, like most other corporations, they can do things like open corporate bank accounts, rent property, and purchase liability insurance. Those in Ontario will also have these standard corporate powers and can also enter into contractual arrangements with transfer payment agencies, assuming those arrangements are not contrary to law. However, in neither province is the incorporated network the decision-making agent for all purposes.  

What does this mean for supported decision-making? The removal of legal responsibility from the supported person for some decisions could be seen as a departure from ordinary supported decision-making principles. Indeed, some informants viewed the removal of full legal agency from the person as anathema to principles of supported decision-making and equality. On the other hand, it could be argued that the corporate model is more consistent with the principles of supported decision-making in that it expressly recognizes the interdependent, group nature of decision-making, and matches legal responsibility to the locus of decision-making. Indeed, although it identifies a new legal agent (the incorporated network), making this different from most models of supported decision-making, it is not quite substitute decision-making either. Most importantly, it does not require any finding of legal incapacity, and the person him or herself is part of the collective that is the new decision-making agent.

In summary, it is impossible to make general or definitive statements about whether personal support networks are engaged in supported decision-making. Some are (even on the strictest definition) and some aren’t (even on the most inclusive definition). Most informants acknowledged that some people form networks that might technically fall into the definition of “personal support network” used for this paper that are not intended to support decision-making. On the other hand, in the networks in which informants had directly participated, the most common approach was to apply decision-making principles that are generally consistent with the “will and preferences” approach to supported decision-making. Finally, in the case of incorporated networks that make decisions in their corporate capacity, this could be seen as a distinct approach that lies somewhere between substitute and supported decision-making. While it removes legal responsibility for decisions from the supported person, it appears consistent with other key principles of supported decision-making. In particular, it seems to provide a means for some personal decision-making to take place in a way that maximizes the person’s participation but does not require any legal capacity assessment.