Over the last decade, there has been more movement to seek less restrictive alternatives to guardianship. Supported decision-making has emerged as one of the most popular options, although its prevalence varies widely depending on what state you live in. This article will provide an overview of supported decision-making and discuss how it can be used as an alternative to guardianship.
Supported decision-making is a model that empowers the individual with a disability to be the ultimate decision-maker for themselves, while providing a system of support from others to provide them with the resources they need to make decisions. While the United States has been slow to implement supported decision-making it has been widely adopted in other countries,1 as outlined by the United Nations Committee on the Rights of Persons with a Disability. Under this model:
The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of the individual. Even when an individual with a disability requires total support, the support person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible, according to the wishes of the individual.
In Canada, Prince Edward Island enacted the Supported Decision-Making and Adult Guardianship Act in 1997,2 which provides for a “supported decision-making agreement” for persons with disabilities over 18. Before that, British Columbia had established “representation agreements,” which provide for a contractual agreement between two or more adults to formalize a support relationship.
Supported decision-making starts from a different premise than guardianship and other alternatives. With a supported decision-making agreement (SDMA), the individual with a disability retains complete decision-making authority. The agreement outlines the areas of support they desire, who will provide that support, and where in the decision-making process the support will be provided. The supporter must consent to accept the decisions of the principal and not to step in and act for them. In addition, the supported decision-making agreement can be changed or revoked at any time.
In contrast, in a Power of Attorney document the individual with a disability appoints another person to act for them in certain situations. A POA can still be changed or revoked by the individual appointing the Agent (which is one reason some parents choose guardianship over a POA). Guardianship is the most restrictive alternative because it requires a finding of incapacity, but also because it can only be changed or revoked by the Court (upon petition by any party). Supported decision-making rejects (or at least separates) the issue of legal capacity. It recognizes that one can be found not to have mental capacity, but to still exercise legal agency with support.
Although supported decision-making takes a differing approach than a POA, they are not mutually exclusive. An individual could have both a SMDA and a POA, where they appoint an individual to act for them in certain situations. The framework for when each would apply would need to be carefully delineated. Some families will consider a limited guardianship, which carves out areas of retained capacity where the individual is able to make their own decisions. For example, a guardianship order might state that the individual can make decisions regarding their daily activities, employment, and ability to manage small amounts of money, but that amounts over a certain threshold must be handled by the Guardian. This is fundamentally different from supported decision-making where the premise is that the individual has decision-making authority in all areas, but needs support in making certain (or all) decisions.
At a practical level, even states that do not have a formally supported decision-making process generally encompass into their guardianship system the idea of involving the individual with a disability in decision-making. For example, in New Jersey, courts must consider the least restrictive alternative and the court-appointed attorney is required to specifically report on what alternatives were considered and why they were rejected. In addition, the guardianship order requires, even in a full (plenary) guardianship, that the Guardian must consult with and give appropriate deference to the wishes of the incapacitated person.
With traditional guardianship, the involvement of the individual with a disability in decision-making will often vary on a case-by-case basis. I serve as Guardian for a man with intellectual and mental health disabilities. He is very independent and makes his own decisions in many realms. His finances is the one area that he has less authority over. He overcomes this by doing odd jobs for a neighbor for cash, which he then spends as he wishes. Does it matter that he has a full guardian if he is free to act independently in most ways? It is easy to miss how the psychology of the approaches is totally different, and how meaningful that can be for the individual. With supported decision making, the individual with a disability is autonomous to make decisions in the same way as we all do, seeking support where needed. If I were to buy a car, I would seek out the input of someone with more experience with cars than I have. Similarly, my clients who are turning 65 come to me to ask about their Medicare and Social Security options.
Since we all use support in decision-making, this begs the question of why a formally supported decision-making process is necessary. Some legislation is focused on providing the mechanism for support and recognition of the arrangement by third parties such as banks and hospitals. This would give the support person certain authority, such as access to information and the ability to assist in communicating the individual’s wishes. At a more fundamental level, the formally supported decision-making framework is aimed at ensuring that the individual with a disability has the information they need to fully consider and understand the decision and the implications of their choice. In some instances, it can be seen as a way of slowing down and parsing out the decision-making process. In other circumstances, it is a matter of being able to communicate the wishes of the individual and ensuring that their wishes are heard and respected.
The American Civil Liberties Union has a great guide to creating a supported decision-making agreement3 and it provides a comprehensive list of types of support:
- Plain-language information
- Information in pictures or explained
- Research to learn more about choices
- Help in knowing what choices you have
- Visits and trials
- Reminders about important dates and times
- Help in thinking about pros and cons
- Having a supporter come to meetings and appointments with you
- Talking to experts who know a lot about my choice
- Extra time to think about choices
- Reminding you of about your values
- Classes to learn about healthy choices
- Technological support
- Help communicating a choice
The ACLU form also includes the option to appoint a monitor, who will review financial statements and make sure that the supporters are acting honestly and in keeping with the person with disability’s wishes. It also addresses release forms such as HIPAA release and a Family Educational Rights and Privacy Act (“FERPA”) release, which should be executed along with the SDMA to allow the supporters to access the information they will need to provide support to the decisionmaker.
Approximately 14 states and the District of Columbia have enacted supported decision-making laws.4 Some states limit who can serve as the formal supporter. For example, in the District of Columbia, the supporter cannot be someone who provides services to the decisionmaker, which could be a real limitation for many people. New York has some interesting provisions as part of its legislation. Every person is presumed to have the capacity to enter into a SDMA, unless they have a legal guardian. A decision made pursuant to such an agreement must be honored by third parties, unless the third party (not the supporter) has substantial cause to believe that: the agreement has been revoked, the decision-maker is being victimized, or that “the decision will cause substantial and imminent physical or financial harm to the decision-maker.”5
This provision recognizes the concerns that some stakeholders have with supported decision-making – fear of victimization or harm. In places where there is no provision for not following the individual’s decision, supported decision-making can result in individuals making decisions that can be imprudent or harmful. Government institutions, providers of services to individuals with disabilities, and families are often risk averse and tend to err on the side of protection. However, disability advocates argue that individuals with disabilities should be allowed to make mistakes and learn from them, as we all do. While guardianship is rightly seen as a protective measure, supported decision-making can be paired with other safeguards to protect against exploitation.
Supported decision-making may not be appropriate for all people. An individual who cannot fundamentally understand a decision and its risks, even with support, or cannot communicate preferences in any way, cannot use supported decision-making effectively. Another challenge of supported decision-making is how to apply it with individuals with severe mental illness. Supported decision-making is certainly easier for people with mild to moderate intellectual and cognitive impairments, as compared to people with psychosis and other types of extreme mental stress, whose decision-making abilities may fluctuate rapidly. The serious issues of self-harm and aggression have to be considered.
While supported decision-making may not be right for every individual with a disability, or for all decisions, it does provide an important shift in perspective which can be applied widely. Individuals with disabilities should be presumed capable of making decisions with support unless there is clear evidence that they cannot. Even individuals who are determined not to be capable of making or communicating their decisions6 can still be engaged in the process through the types of supports outlined in SMDA agreements, such as the ACLU document. Capacity and independence can be maximized through the use of the supported decision-making process.
References
1. https://www.un.org/development/desa/disabilities/resources/handbook-for-parliamentarians-on-the-convention-on-the-rights-of-persons-with-disabilities/chapter-six-from-provisions-to-practice-implementing-the-convention-5.html
2. https://supporteddecisions.org/about-supported-decision-making/sdm-as-an-international-movement
3. How to Make a Supported Decision-Making Agreement, available at https://www.aclu.org/documents/supported-decision-making-resource-library
4. Alaska, Colorado, Delaware, Illinois, Indiana, Louisiana, Nevada, New Hampshire, Rhode Island, Texas, Virginia, Washington, and Wisconsin
5. NY Mental Hygiene Law Sec. 82.11.
6. Perhaps in a certain arena or decisions that are particularly complex and/or harmful and involve risks that the individual cannot fully understand even with support.
ABOUT THE AUTHOR:
Shana Siegel concentrates her practice on representing seniors, individuals with disabilities, and their families with life care planning, public benefits, trust and estate planning and administration, resident rights, health care decisionmaking, guardianships and long-term care advocacy. Shana has been certified by the National Elder Law Foundation (NELF) and is recognized as a member of the Counsel of Advanced Practitioners. Prior to joining Norris McLaughlin, P.A., Shana was with WanderPolo & Siegel for over 10 years. She is a past president of the New Jersey Chapter of the National Academy of Elder Law Attorneys (NAELA). Additionally, she has been an officer for the New Jersey State Bar Elder & Disability Law Section.
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