A. Summary

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.

Supported decision-making is generally not well known or broadly accessed within any of the jurisdictions where it exists. People who care passionately about it as a way to preserve autonomy and rights are highly engaged around this topic, but the awareness has not yet filtered through into the everyday consciousness of ordinary citizens or legal professionals. There was a sense that substitute decision-making concepts were hard enough, and supported decision-making had not yet reached a tipping point of understanding in terms of use.

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 parti