I. Introduction2017-03-03T18:33:24+00:00

A. Context

This project arose out of a much larger investigation, being conducted by the Law Commission of Ontario (LCO), into Ontario’s legal capacity, guardianship and decision-making laws.  The LCO’s multi-year project is considering Ontario’s Health Care Consent Act , Substitute Decisions Act , and certain elements of the Mental Health Act , with a view to determining whether, and if so how, Ontario’s laws, policies or practices, or the practices of non-governmental parties, ought to change. A central focus of that project is the different possible approaches to legal capacity and assistance with decision-making, and the extent to which they are consistent with respect for the dignity and autonomy of older adults and persons with disabilities, as well as the importance of preventing and addressing abuse. More broadly, the LCO’s project is informed by the principles identified in two earlier “framework” LCO projects on the laws affecting older adults, and persons with disabilities, respectively. 

One of the areas being examined in the LCO’s project is supported decision-making. Although there is no single agreed-upon model or definition, supported decision-making models generally reject the basing of legal capacity rights on particular levels of ability, in favour of requiring supports and accommodation to enable the exercise of capacity. Rooted in a social model of disability, supported decision-making has found more recent support in the s. 12 equality guarantee of the Convention on the Rights of Persons with Disabilities (CRPD). 

In its discussion of supported decision-making in its Legal Capacity, Decision-Making and Guardianship Discussion Paper (“Discussion Paper”), the LCO observes that despite the enthusiasm that many have expressed for supported decision-making, there remain some challenges and concerns. Three of these are the importance of guarding against misuse or abuse of the supporter role; the difficulty of making people legally responsible for decisions they might not have fully understood; and the need for clarity and security for third parties who need to know when they can rely on a decision as authoritative.  A further concern is the lack of empirical evidence as to how supported decision-making is working in practice. As others have observed, there is “almost no evidence” regarding the practical operation of supported decision-making. 

Against the backdrop of these concerns, and drawing on the principle that any legal implementation of supported decision-making should take into consideration local contexts and experiences, the LCO determined the need for additional research into the decision-making supports that currently exist in Ontario. Moreover, it identified “personal support networks” (sometimes called “networks” in this paper) as one such support deserving greater scrutiny, and commissioned this research project to take up this challenge. 


B. Project purpose & research questions

The purpose of this project was “to consider whether or how ‘personal support networks’ as currently operating in Canada, may or may not provide a practical foundation for formalized, legally protected supported decision-making in Ontario”.  More specifically, it addresses the following research questions:
–    How are personal support networks currently operating in Ontario and British Columbia?

–    Are these personal support networks providing a form of supported decision-making?

–    Can personal support networks be understood as decision-making entities?

–    If so, what would be the implications of formalizing, or building on, this approach in decision-making laws?

In answering these questions, I tried to pay particular attention to the importance of protections for vulnerable decision-makers, and the needs of third parties.


C.    Limitations

This study has several limitations. First, personal support networks as they are discussed here arose largely out of the community living movement. Although some informants discussed small pockets of use in other communities, the vast majority of the work pertaining to personal support networks and decision-making appears to be directed to supporting people with intellectual and developmental disabilities. While some informants expressed views about whether this approach could be helpful for other vulnerable adults (such as older adults or persons with mental health challenges), this study primarily addresses how personal support networks are being used now. It does not consider to any significant degree whether networks hold promise for a wider community.

A second significant limitation is that this study does not directly take into account the perspectives of the individuals supported by personal networks. While informants – e.g., parents and other network members – sometimes provided third party accounts of the views of some supported persons, and at least one supported person has publicly shared writing describing some of his experiences, my understanding of this perspective is necessarily limited.  The reasons for proceeding in this way were two-fold. First, the timelines for this study were short, requiring that the vast majority of interviews be conducted over the telephone. Second, the ‘nuts and bolts’ practical functioning and legal contexts of personal support networks were thought to be issues that could be adequately captured – at least in an initial way – by speaking with others involved in the process. The result of this approach is that this study provides some evidence as to how networks are operating in practice and the decision-making process in which participants are intending to engage. However, it does not fully assess (i) whether there are gaps between stated principles and practice; or (ii) the more subjective and substantive elements of supported decision-making – for instance, whether supported individuals experience personal support networks as empowering or whether they result in ‘better’ decisions. 

Finally, this study has a limited scope. It does not purport to consider all networks from all angles. I did not (and did not attempt to) consider every personal support network in Ontario and British Columbia. This would, after all, be impossible. First, there is no easy way to locate them all. There has been over 30 years of writing, thinking, and experimenting with these issues. While some of the people devising network supports for their loved ones have written books and founded organizations, others are quietly going about this work without websites or formal assistance. Second, even among the people identified (whether because their names and contacts were generously offered, or because they are associated with organizations with websites and telephone numbers) I was not able to speak with everyone. Some did not respond to my requests for an interview or were unavailable in the time allotted. In other cases there was simply insufficient time. This study can therefore only be illustrative. It provides a rough picture of some kinds of personal support networks that people are using, and how they fit into the legal landscape.

 

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