Li is a 70-year old man with fluctuating capacity due to brain injury caused by a fall 15 years ago. It is important to him that he have the dignity to make most of his own decisions but he is aware that sometimes he can’t think as well as other times. He is interested in a supported decision-making arrangement, but knows that pragmatically it needs to have a provision to let his supported decision-maker make substitute decisions as well. He’s not sure how he will know the difference or even if this matters. The bank manager, Mr. Tong, also knows Li’s son Alexander. Mr. Tong wants to help but he’s uncertain who he is supposed to take instructions from and when. How will he know when he is to take instructions from Li, and when to take instructions from Alexander? In the end, a supported decision-making agreement is made up by a lawyer, appointing Alexander as the supported decision-maker. However, significant time is taken with Mr. Tong working out, on a pragmatic basis, what banking limits and controls can be put in place to make it work. Everyone agrees to try it out, as they all want to help Li; however, some practical worries remain. Alexander’s sister seems sure to be annoyed, and is worried about protecting her future expected inheritance.
Overall, supported decision-making was found to be a welcome option in the five jurisdictions. However, in each of these jurisdictions, the same types of comments emerged: “we like having it but we do not really know how to use it well”. All informants referenced a lack of available information on supported decision-making. Even individuals engaged in supported decision-making relationships shared some confusion about what it was and how it was different from substitute decision-making.
Some jurisdictions have supported decision-making in statute but still most practitioners functionally prefer to use a plenary guardianship model. Other jurisdictions have openly embraced the concept of having a vulnerable adult keep decision-making autonomy, but despite this intention, are still somewhat challenged to integrate supported decision-making. Even where supported decision-making occurs it is challenging to monitor that slippage between supported and substitute decision-making, and ensure that practices honour the intensions of the supported adult, because even in jurisdictions such as British Columbia, which has a rich supported decision-making community, the term representative is used to denote both substitute and supported decision-makers.
Supported decision-making is seen by many as a way to get around the roadblock of privacy limitations. Generally, where the system is easy to access, cost was not a major barrier, and personal liability was also not an overwhelming worry for those engaged in supported decision-making.
Abuse and neglect will occur in all systems, legal or not. There was no expectation that supported decision-making would increase, or decrease, the risk of abuse or neglect. Rather, it is viewed as an option that allows individual autonomy to be protected to a greater degree, at least in theory. In practice, concerns still exist that the day-to-day decision-making is actually substituted.
There are no toolkits, educational standards or best practices for how to do supported decision-making specifically. Increased education for all parties is required, including, but not limited to: people with intellectual disabilities and their supporters, seniors and their supporters, caregivers, health care providers, social service workers, community case workers, non-profit organization staff, lawyers and judges.
B. Key Themes from the Research
1. Supported Decision-making: An Inherently Informal Process Made Formal
The act of supported decision-making is inherently an informal process. The laws governing supported decision-making are often making the flexible, trust-based relationships formal and binding in some way. It is not always an easy fit.
In essence, supported decision-making regimes are simply a legal framework formalizing what many community-based and grass-roots organizations, predominately in the field of intellectual disabilities, already do. In this sense, supported decision-making works very well on its own, outside the legal sphere. It happens on a daily, functional level. Where good relationships exist, the handling of funds and entering into arrangements is managed without much in the way of legal formality.
However, there are areas where increased formality is required. In particular, lawyers, health care professionals, government agencies and financial institutions often express the need for a more formalistic decision-making arrangement, with a clear sense of who is making what decision, and on whose proverbial shoulders liability sits.
2. Who is the Most Appropriate User of Supported Decision-making?
Supported decision-making seems to work best when a person with an intellectual disability is assisted by one or more key people in their lives who they can consistently turn to and involve in discussions about making a decision. Supported decision-making appears less appropriate for people with mental health and psycho-social challenges in periods where they may be involved in a mental health break.
Older adults have not yet generally embraced supported decision-making as a formalistic concept of autonomy or personhood, but rather engage in it informally by including family members or friends in discussions. Use of supported decision-making documents for older persons with dementia is generally viewed as an interim measure only, until the adult is able to put substitute decision-making regimes in place.
There is no clear evidence that supported decision-making is particularly affected by gender, race or ethnicity. Many cultures have a more communal sense of decision-making and supported decision-making may be a good option for those with these types of cultural norms.
There is not enough evidence at this point to determine whether literacy levels, indigenous culture, or regionality impact on the use or acceptance of supported decision-making in general.
3. Measures or Supports which Aid Supported Decision-making
In each of the jurisdictions, experts strongly indicated that funded NGOs working in the field of aging, mental health and intellectual disabilities should play an important role in educating their constituencies about supported decision-making. Where they exist, programs which assist in form-filling, advocacy and brokering knowledge have a positive impact on the uptake of supported decision-making. Government systems (Public Guardian, Public Guardian and Trustee, Vulnerable Persons’ Commissioner, etc) benefit by having designated staff who are engaged in community outreach, support and education, as well as to support in-house cases involving supported decision-making.
Increased education to the involved third parties, such as lawyers, health professionals and members of the financial sector, was consistently called for. With good understandings of supported decision-making, both formal and informal, these third parties can both have their concerns alleviated as well as help to support the autonomy of individuals. On the other side of the coin, increased understanding of the roles of substitute and supported decision-making, particularly in the financial sector, can help staff to be vigilant and act appropriately if abuse or neglect is suspected.
4. Use of Monitors
The use of monitors was generally seen as a positive option for supported decision-making. While there was a lack of clarity around the specifics of the role and day-to-day functions of the monitor, the idea that there is someone who can help support the overall review of the process and to aid the parties was considered a positive.
This paper was produced to support the work of the Law Commission of Ontario with respect to a project focused on amending Ontario’s legislation; however, significant themes emerged that point to current challenges experienced in all the jurisdictions we considered as part of this research. The recommendations below are provided for consideration of any jurisdiction exploring creating or enhancing supported decision-making regimes and practices. There is much for all of us to learn by considering what is working well, and not so well, in the various provinces and territories. Where helpful, we have constructed the language of the recommendations to reflect some of the unique features of the existing Ontario regime.
The Albertan “downloadable” Supported Decision-making form has been very positively received. It is free, easy to access and generally easy to understand. Informants considered this form a useful and practical formalization of an inherently informal process. For people who wish to reduce third party concerns about privacy and inclusion, this approach has been generally helpful. If a more layered approach is preferred, the Yukon legislation provides a “something for everyone” approach that allows people to pick and choose levels of support. The court-based Albertan co-decision-making approach is still too novel to accurately gauge effectiveness.
An easy to use, downloadable form that allows an adult to appoint a supported decision-maker should be considered, if an open model is preferred in Ontario. If a more formal model is preferred, a still very flexible approach exists in the Yukon, which should be considered. If a court-based model is considered, the Albertan co-decision-making model should be further explored through deeper client-based research before being recommended.
Use of the term “representation agreement” in both British Columbia and the Yukon has been confusing and is not recommended. “Assisted decision-making” and “co-decision-making” are less confusing but still make it unclear who is the final decision-maker. Use of the term “Supported decision-making” is the best understood term, and the one that has gained the greatest understanding in terms of function and purpose.
Use the term “supported decision-making” and “supported decision-maker” for greatest clarity and uptake.
3. Tribunal and Court Involvement
The administrative tribunal system was overwhelmingly held to be the most promising approach for supported decision-making systems. Administrative tribunals were considered more accessible, less intimidating, and more expert in their deliberations around issues such as decision-making, least intrusive approaches and community linkages.
The Ontario Consent and Capacity Board seems well-placed to oversee supported decision-making challenges, with an appeal to Superior Court. Where court-based systems are in place, ensuring that public funding and advocacy is available is critical. Providing appropriate training to lawyers and judges about supported decision-making is essential. While the s.3 Counsel model exists in Ontario, possible expansion of this approach may be required.
Privacy concerns by third parties is one of the key drivers to formalize the often already informal supported decision-making systems in place for vulnerable adults. Some of those privacy concerns are real; others are a reaction to lack of confidence in privacy laws and obligations, including the law of consent.
Third party actors such as lawyers, health care providers, risk managers, government service workers, community support workers and financial institution staff need significant support and training on issues of privacy, consent and working to support the capacities of socially vulnerable adults in order to avoid inappropriate substitute decision-making on their behalf.
While supported decision-making makes common sense to many people, and has generally been embraced as a concept that supports autonomy, few people feel confident that they know what it truly means, or how to effect it. Education in this area is required.
Develop a series of educational and training materials in a variety of formats which provides practical “how to” training on best practices, micro-skills, obligations, risks and things to avoid. Ensure that companion materials are also available for the third party actors noted above, but in particular health care providers and financial institution staff. Roll-out this material effectively across the province, preferably before the legislation comes into full effect, but certainly after any legislative implementation.
6. Access to Justice
Access to justice is a real and significant concern in the area of supported decision-making, particularly with adults who may have social vulnerability and/or cognitive impairment. Ensuring that NGOs who work directly with community are appropriately funded to provide their clients with practical as well as advocacy supports is critical.
Community-based organizations should be funded to assist clients with form-filling, education delivery, outreach, and advocacy supports.
Multiple barriers such as language, ethno-cultural heritage, disability, mobility challenges, newcomer status, gender and sexual orientation are likely to create increased difficulties for accessing justice in this field. However, research is lacking in drawing specific conclusions between the linkages of these barriers and supported decision-making.
Increased sociological and legal research into multiple barriers and their impact on supported decision-making is required.