The timeline for this project – from start to draft report – was approximately two and a half months. It took place in three broad stages, intended to locate personal support networks within the existing literature; provide information about how they are presently functioning in Ontario and British Columbia; and analyze their current and potential legal significance.
A. Literature survey
The first stage was a survey of the literature relating to personal support networks. The purpose of this step was to review some of the history and conceptual foundations of efforts to support personal support network creation in Canada (and particularly in Ontario and British Columbia) to provide a context within to locate the remainder of this study. This review did not substantially examine the broader literature relating to the importance of relationships, social inclusion and social capital to persons with disabilities (and indeed, to everyone). Rather, it focused on literature relating to concrete attempts to support the creation and maintenance of personal support networks with some degree of formality – i.e., entities such as “Microboards” and PLAN support networks (see the definition of “personal support network” below). It examined formal academic literature relating to these attempts (of which there was relatively little) using academic search tools, as well as the more voluminous other writing such as reports, websites, and ‘blogs’. The results were primarily relevant to, and are described in, Section IV below.
A core purpose of this project was to obtain information about the practical functioning of personal support networks as it relates to decision-making. To this end, the second stage of this project was a series of semi-structured interviews with persons with knowledge and/or experience with personal support networks (“informants”).
1. Who was interviewed
There was a total of 19 informants, falling into four broad groups:
1. “Professional participants” (n=8; Ontario, 5; British Columbia, 3) defined as people who work with networks in a professional capacity – e.g., lawyers who advise on their structure and operation; professional facilitators; and employees of organizations directly involved in personal support network work.
2. “Lay participants” (n=4; Ontario, 3; British Columbia, 1) who were people participating in personal support networks in a voluntary, non-professional capacity – i.e. parents and non-parent members;
3. “Professional non-participants” (n=9; Ontario, 5; British Columbia, 3; Saskatchewan, 1) with expert knowledge of personal support networks – e.g., through policy work, advocacy, or academic study – but no direct personal experience with them; and
4. “Third parties” (n=1; Ontario, 1; British Columbia, 0), meaning government and private parties who interact in some way with the decisions made in personal support networks.
These are not neat categorizations. First, three informants self-identified as wearing several ‘hats’, and provided information from their experience as, for example, both a professional working with personal support networks and a lay member of a particular network. In these cases I tried to take into account the informants’ views from both roles, meaning that they were “double counted”. (For this reason, the sum of the informants across the four categories is greater than the total number of persons interviewed.) There was also some subjectivity involved in allocating informants to these categories, for instance, in determining whether a person employed in a community organization was sufficiently directly involved to be called a “participant”. Finally, the term “lay” in this context refers to participants’ voluntary (non-paid or non-professional) participation in the networks on which their interviews focused. All of the “lay participants” were, however, long-time advocates with substantial expertise in the area of personal support networks.
2. Identification and recruitment of informants
The process of identifying and obtaining the agreement to participate of informants initially relied on existing relationships with the LCO. The LCO reached out to contacts in a number of organizations in Ontario and British Columbia. These individuals served as early informants through which the Conversation Guide was refined, and provided further information about whom to contact. At the conclusion of every interview I asked the participant whether they could identify anyone else with whom I should speak. In this way, there was a ‘snowball’ process of identifying and recruiting individuals. Where there were gaps in the perspectives I was obtaining, or where there were organizations or people known to me through my research but where I had no personal contact, I reached out directly. I attempted to ensure an adequate spread of informants as between Ontario and British Columbia, and between the categorizations described above. However, this was not always possible. At the point when I had to conclude the interview process, there was only one lay participant from British Columbia, and only one informant (from Ontario) had spoken to the third party perspective.
3. Interview process
In all but a few early exploratory interviews, I sent a preliminary introductory email outlining the kinds of questions that I wanted to discuss. This email also explained that the interview would be confidential (specifically, that that their names would be provided to the LCO, but that neither names nor other identifying information would be included in any report); that I would not be recording but would take notes; that I would use my notes for the purposes of a report for the LCO; and that I would not include direct quotes unless I had express prior consent to do so. Where I did not send an introductory email I conveyed this information at the outset of the interview. All but three interviews were conducted over the phone. They ranged from 20 minutes to two hours. Several individuals spoke with me twice.
The interviews were semi-structured, meaning that I was prepared with a Conversation Guide (attached as Appendix A) with a list of questions. However, I also indicated to each informant that this was not meant as a ‘script’, and that they should feel free to redirect the conversation as they deemed appropriate. The interviews were conversational in tone and many informants were very frank with their experiences and perspectives. Finally, the informants – whether they were parents, professionals, or academics – consistently spoke with remarkable energy and enthusiasm about the creative design of supports and protections for persons with disabilities, making the interviews both educational and a privilege.
C. Legal research
The final stage of this project required research into (i) the laws and standards currently applicable to personal support networks, and (ii) the possible legal implications of building on or formalizing this approach in decision-making laws. This required preliminary research into the laws and policies relating to government direct funding programs; the law governing non-profit organizations; employment law; and human rights law among other areas.
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