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 faci