IV. History and Context: Three Themes in Personal Support Networks

IV. History and Context: Three Themes in Personal Support Networks2017-03-03T18:33:24+00:00

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 caring relationships”.  

 

C.    Person-directed planning and facilitation

Although it again overlaps significantly with the other themes discussed, the theme of person-directed planning and facilitation deserves separate treatment. Newly a policy focus in Ontario, Developmental Services Ontario describes “person-directed planning” as a process that “helps a person with a developmental disability to find the tools and funding they need to live their dreams and meet their goals”.  A guide published by the Individualized Funding Coalition for Ontario defines it simply as “an ongoing process that helps you think about the future”.  A number of tools and techniques have been developed to assist with personal planning, usually with the assistance of a facilitator.  People may access these planning supports through a community agency that provides them, or by paying an independent facilitator. 

Ontario policy allows persons receiving funding under the Passport Program to use up to $2,500 in Passport funds for person-directed planning.  Person-directed planning is also recognized under Ontario’s new services legislation – the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008 (“Social Inclusion Act”). The Act defines “person-directed planning services and supports” as those that “assist persons with developmental disabilities in identifying their life vision and goals and finding and using services and supports to meet their identified goals…”

Regulations passed under the Act (though not yet in force) state that person-directed planning services and supports will qualify for inclusion in direct funding agreements.  The Ministry of Community and Social Services has also published a Person-Directed Planning and Facilitation Guide intended to “educate people about the value of well delivered person-directed planning and facilitation and establish key parameters surrounding best practice”.  It discusses the numerous facilitators and facilitator networks now in Ontario, describing independent facilitation as an “emergent profession”. 

Person-directed planning and facilitation does not automatically imply a personal support network, and even where a person has a network, he or she may choose not to involve it in the planning process. However, the two often go hand-in-hand. For example, a 2008 study by Lord and Hutchinson found that “[n]etwork building was an intentional focus” among families with access to both individualized funding and facilitation, with 54% of participants meeting “regularly” with “support circles” or “personal networks”.  They found that participants often created networks before developing a support plan, and that facilitators “played a major role” in helping people to develop their support networks and to plan.

The Social Inclusion Act also recognizes that persons may participate in person directed planning “with the help of their families or significant others of their choice”.  The MCSS Person-Directed Planning and Facilitation Guide observes that this ‘help’ may come from a personal support network:

Person-directed planning and facilitation intends to assist people of ALL abilities to create a better life. While in some cases the person may have the ability to “direct” the process, this will not be true in all cases. In situations where people may need to rely to a greater degree on those around them the process may be initiated by someone other than the person. This may include involvement either of family, of [a] support network/ circle of support, or in some cases a service provider. [Italics added.]

The planning and facilitation process itself may also involve the development or expanding of a person’s support network. Ontario’s Ministry Community and Social Services describes “relationship building” – “gathering people who will be involved in planning (sometimes known as the ‘circle of support’) and orienting the focus on the person, their dreams and goals” – as a typical step in the planning process. 

It is difficult to know how this is working in practice. Several informants suggested that notwithstanding Ontario’s apparent policy shift towards individual choice, planning, and facilitation, this hasn’t yet been implemented to a significant degree.  On the other hand, there are indications that a range of active facilitated networks existed in Canada even previous to Ontario’s policy shift. A 2004 study observed “resilient and sustainable facilitated social networks across Canada”, and predicted “ever-expanding numbers involved in this work”.  The comments of some informants (to the effect that Ontarians are increasingly taking up facilitated planning within their personal support networks) provide some support for this prediction. On the other hand, an Ontario parent and independent facilitator said that parents are very often reluctant to set up sustained networks for their sons and daughters, and that networks set up specifically for planning purposes do not always last.

This section was intended to, first, provide some context and history to clarify the nature of the entities under study, and second, highlight the heterogeneity of personal support networks in both their practical operations (discussed further in the next section) and their basic premises and purposes. These different purposes are often rooted in common values, which values may also be consistent with supported decision-making. At the same time, in considering the potential of ‘network approaches’ for supported decision-making, it will be important to recall the variety of possible objectives and approaches, and to be clear about which ones (if any) should be formalized in law.

 

 

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