A. Terminology in the field
As one informant emphasized, we are all involved in “personal support networks” in some way or another. Although the term has taken on a set of meanings with particular relevance to persons with intellectual and developmental disabilities and their supporters, it is important not to lose sight of the ‘natural’ basis for personal support networks, and the reality that everyone draws on a variety of personal supports in the making of personal decisions. Indeed, this kind of ‘normalization’ of supports is one of the core insights of supported decision-making models, and the approach to legal capacity in Article 12 of the Convention on the Rights of Persons with Disabilities. The principle often expressed by proponents of supported decision-making models is that nobody makes decisions independently; some people simply require more supports than others in order to exercise their decision-making capacity.
At the same time, terms such as “personal support network”; “circle of friends”; “support circle”; “Microboard”; “Aroha entity”; “self-directed support corporation”; and “person centered society” get used to mean particular things (though not always in a consistent way), thus requiring some preliminary discussion of terminology. At the most general level, these terms can all be applied to groups of people coming together on a voluntary basis, with varying levels of formality, to in some way support a single individual through relationships of trust and intimacy. On the other hand, the details and precise purposes of these arrangements can vary significantly.
The easiest of the terms to define is “Microboard”. Although the term originated in Manitoba, it was placed under copyright and trademark protection by the Vela Microboard Association in British Columbia. Although one occasionally sees other references to “microboards”, the term has been legally reserved for use by organizations following the Vela Microboard model – that is, an incorporated not-for-profit organization to support a single individual and with certain features (e.g., a minimum of five directors). The Vela Microboard model has been adopted and promoted in some other jurisdictions, such as Tennessee (through the Tennessee Association of Microboards and Cooperatives ) and Texas (see the Texas Microboard Collaboration ). People wishing to incorporate a personal support network without following all required elements of the Vela model use a variety of other names, such as “self-directed support corporation” (common in the United States); “Aroha entity” (groups following a model developed in Guelph, Ontario); and “person centered society” (in use in British Columbia). This paper sometimes uses the generic term “incorporated network”.
Among incorporated models, groups may of course have different structures, practices, purposes and ideas of what is required to “support” the focus person. However, a commonality is that they have greater legal powers and, in some jurisdictions, the ability to receive and manage funds. As one author puts it: “What distinguishes the microboard approach from… other individualized approaches to support is that the individual, through the microboard structure, receives and controls the dollars…” Another explains that an Aroha entity is “the incorporated core of a person’s circle of friends” with “the objects and legal powers to address the vulnerable person’s planning and support needs”.
Unincorporated models are (by definition) less formal in their legal structure, but may still be more or less formal in their organization and functions. People sometimes use the term “personal support network” to denote a group with more structure and regularity, and the term “support circle” or “circle of friends” to mean a looser group of supporters that does not necessarily have defined membership or roles. On the other hand, the terms are sometimes employed in precisely the opposite way. For instance, a group in the United Kingdom defines a “circle of support” as “a group of people who meet together on a regular basis to help somebody accomplish their personal goals in life”. In a similar vein, the Ontario Ministry of Community and Social Services has defined “circle of support” as “a group of non-paid people who connect on a regular basis to help a person with a developmental disability to undertake a planning process… and spend social time together.” The Ministry says “this term is slightly different from a similar and commonly used term: personal support network”, which is “generally considered to include a wider range of people” and “can extend to almost anyone that someone may know.” Other groups use the language of “networks” to refer to more defined groups intended to have stability and longevity. For instance, Planned Lifetime Advocacy Network (“PLAN”) helps people to establish “personal networks” and commits to providing lifelong supports to encourage network continuity. Finally, the same or similar groups may use different language over time. (For instance, an informant spoke of a group that began using the language of “circles” but now prefers to speak about “networks”.)
These are terms with a degree of malleability. However, irrespective of their precise usage, they often refer to groups with shared values. For instance, they tend to emphasize “the critical importance of relationships with friends”, the value of “community allies”, and the need for effective planning to ensure a “more secure future.”
B. “Personal support networks” for this paper
In this paper, the term “personal support network” is used as an umbrella term capable of encompassing all of the terms listed above, when they refer to intentional networks with identifiable members. That is, it includes incorporated entities such as Microboards and Aroha entities, as well as less formal (but still intentional) “circles of support”, but does not refer to the broader web of relationships in which a person might be located. Thus, for this paper, a “personal support network” must:
– be a group of people (a minimum of 3 and usually more) generally including, but also often extending beyond, family members;
– who are in relationships of trust and intimacy with the supported person;
– who consciously undertake as a collective to support a single individual;
– who are not in paid relationships with the supported person ; and
– who meet and/or function with some degree of intentionality and regularity.
Notably, personal support networks may vary in what they understand to comprise their supporting role(s) (e.g., friendship, planning, practical supports), a point taken up below. Finally, there is a degree of tension between the core concept of “individualization” – a principle at the heart of many developments in deinstitutionalization, funding, service delivery, and principles of “normalization” – and efforts to define personal support networks. A number of informants emphasized that the power of personal support networks lies partly in their ability to be responsive to individual needs, and that we should be very cautious about either requiring people to have personal support networks, or requiring those networks to take a particular form. (For instance, one person emphasized that some people are more comfortable in one-on-one settings than in groups or “circles”.) In defining personal support networks here, the objective is not to prescribe any particular form as ideal – rather, it is to identify the groups under study.