A point frequently made in the interviews was that personal support networks can be created for a variety of purposes. As one informant emphasised, it is important to always ask: “what are you hoping to achieve”? Personal support networks cannot be neatly categorized; there are nearly as many approaches to, and nuances among, personal support networks as there are networks. That being said, some common themes emerge. Three of these are: (i) individualized funding and service delivery; (ii) friendship and community (and, relatedly, security for when parents are gone); and (iii) person-directed planning and facilitation. While these themes or approaches may (and often do) overlap, different networks emphasize them to varying degrees.
A. Networks to facilitate individualized funding and service delivery
The first “Microboards” appear to have been created by David and Faye Wetherow, in 1984, in Manitoba. An important motivation for the creation of these early Microboards was frustration with then-available funding and service delivery mechanisms. Indeed, establishing Microboards was one part of a multipronged effort to transform support services for persons with disabilities in Manitoba, which, at that time, were limited to residential services and day programs provided by agencies. These efforts began with persuading the government to provide some of the first individualized funding – that is, funding specifically based on a single person’s support needs, and segregated for those purposes – alongside development of both a housing cooperative that was de-linked from services, and a services cooperative that could help people manage their individualized funding and obtain the necessary services.
Microboards then built on this model. The Wetherows explain that individualized funding and the two cooperatives “paved the way for the creation of the first Microboards” in part because of their shortcomings. While they were an improvement over the older system (given that everyone’s funds were segregated and portable), having a single services cooperative maintained some of the weaknesses of the traditional “agency model” – for instance, the challenges of board members having to make decisions about when and for whom to advocate, given that peoples’ interests might not coincide. Microboards were proposed as a solution to these problems, which would “bring the structures for providing supports more into line with person-centered and family-centered principles”. As the Wetherows explain:
The structure of the first Microboards began with a simple question. We asked our friends in government, “what is the smallest unit of human organization that would be eligible to receive ‘agency’-level funding?” The answer was ‘a 3-person non-profit corporation which could be organized to support as little as one named individual’. Hence, the ‘Microboard’.
Beginning in 1990, Vela Microboard Association of British Columbia began to provide services to persons wishing to establish Microboards in that province, copyrighting and trademarking the term. Since 1990, Vela has assisted with the creation of over 900 Microboards, and interest in Vela Microboards is reportedly growing. Eighty new Vela Microboards were established in 2013 alone, and a Vela employee indicated that more than half of the Microboards currently in existence were created within the last four years. As in the Manitoba model, Vela Microboards may (but do not have to) receive funds earmarked for the supported individual, arrange for services, and act as employer of record. The idea is that a person with his or her Microboard can “create services that are creative, flexible and reflect the needs of the individual”. Some people in British Columbia have also created incorporated personal support networks (called “person-centered societies”) outside the Vela model.
“Probably the first Ontario ‘microboard'” was created in 2002 around a man in Guelph. The creators of that network decided to adopt a model different from Vela’s, and replaced the word “Microboard” with “Aroha entity”. The path to this first Aroha entity was also somewhat different from the early Microboards, as there was already an active informal personal support network in place, along with a number of legal arrangements for individualized funding and housing through the Guelph Services for the Autistic (GSA) housing trust. However, the group formalized the “core” of the network as an incorporated entity in order to take on legal powers that it viewed as essential to continuity after the man’s parents were gone. As an incorporated entity, the Aroha could receive and administer individualized funds, act as employer of record, and make contracts relating to housing. The creators of this model argue that Aroha entities have a greater ability “to address the vulnerable person’s planning and support needs, to create solutions, and to manage resources in ways that are responsive and accountable”.
Incorporation and a desire to directly receive and manage funds often go together. Networks will not normally incorporate unless there is a reason to do so, and foremost among these reasons is recognition from government as eligible to receive funding, and from private third parties as eligible to enter into legally binding arrangements. However, individualized funding and incorporated networks are not always perfectly aligned.
First, incorporated networks sometimes have other purposes. While some people opt to create Microboards in keeping with the pure service-delivery model (sometimes alongside another network with social purposes), others have more social objectives. For instance, David and Faye Wetherow describe Microboards as a means of “engaging members of the larger community in purposeful personal support networks.” In setting out the qualities that “define the identity and purpose of a true Microboard”, they emphasize values such as “[a]n unencumbered focus on the identity, needs and express wishes of the person” and maintaining an active and engaged “circle of support” more than they do services. Similarly, Vela has broadened it mandate and, since 2009, has supported Microboards that do not receive funding or act as employer. In these cases the Microboard is intended to provide advocacy and supports that might include helping the person: “plan his/her life; brainstorm ideas; advocate for what they need; monitor services and ensure they are safe; connect to his/her wider community; and do fun things together”. Vela Microboards are also expected to participate in person-directed planning, another of the themes discussed below. Consistent with this, a scholar writing about microboards suggests:
[T]he microboard approach is much more than a funding arrangement and is concerned with much more than how support funds are channelled to the person with a disability and how these funds are spent. The microboard provides a circle of support that both forms a microcommunity for the person with a disability and opens the desired pathways to the community at large. In these ways, it works for empowerment-in-community.
Second, there are instances of unincorporated personal support networks facilitating individualized funding and supports. For example, Manitoba Family Services has a program whereby it offers direct individualized funding to persons with disabilities on the condition that they have a personal support network, which need not be incorporated. An organization called LIFE provides assistance with creating a network to those who need it, and, with the help of the support network the individual him or herself hires and manages staff. Although Ontario does not have a comparable program, one informant discussed an arrangement in which unincorporated support circles in Ontario appear to be playing an active role in directing funding and supports.
These initiatives again reflect inevitable variability. However, the point here is that Microboards and other incorporated network models have generally been organized around the central motivating theme of individualized funding and service delivery.
B. Networks to support friendship, community and security
Another significant theme underlying some initiatives in personal support networks is the social isolation experienced by many vulnerable adults, and the belief that intentional network building can both improve people’s quality of life in the present, and provide greater security for the future. For example, PLAN was created in 1989 in British Columbia out of “the conviction that isolation and loneliness were the biggest challenges faced by people with disabilities”. The organization works from the principle that “[c]aring relationships are the key to safety, security and a good life”. That is, caring relationships are essential to a person’s quality of life (or the concept of “a good life” ) and, “the number of caring and committed family members and friends actively involved in their life” is also the “best guarantee of a safe and secure future”. PLAN provides fee-based services, such as a hired “community connector” to help with personal network creation. It also offers lifetime memberships, which bring with it a “promise to be there after the parents are no longer able to”. There are also PLAN Affiliate organizations (that follow the same objectives and values) in British Columbia, Alberta, Saskatchewan, Ontario, and several U.S. States.
Other initiatives relating to personal support networks build on similar ideals relating to quality of life and security. The founder of the online tool Tyze Personal Networks (who was also a co-founder of PLAN) emphasizes the critical importance of social networks to “health and social outcomes”. Focusing on the ‘security’ side of the equation, the authors of a guide to Aroha entities in Ontario describe friends as “the greatest resource for a vulnerable person”. They explain that “[t]he only real protection for our sons and daughters with a disability is with the quality of the committed relationships they have” (and take an approach to succession planning that pairs these enduring relationships with an incorporated structure).
Numerous organizations, disability scholars, and others emphasize these themes of countering loneliness and isolation; supporting meaningful connections and contributions within the community; and providing greater security for the future. These discussions sometimes take place in the context of assessing service delivery models, with some expressing frustration with the “confines of the disability services system”. For example, a Toronto organization states on its website that “[p]eople who have disabilities are at risk of becoming isolated and surrounded by people who are paid to be in their life”. Similarly, an informant took the view that government policy in British Columbia supports a services model that can act as a barrier to authentic relationships with unpaid persons.
Thus, although it is difficult to categorize personal support networks (they all invariably have a range of purposes and underlying philosophies), one common theme is friendship and its importance to well-being and security. And, some personal support network initiatives, more than others, reflect this particular focus on “the social support that comes through having a network of car