Hayes
In the still of darkness, you hear a whisper foretelling that you will live until your centennial birthday. But that’s not all. The whisper reveals that today you have made the last decision you will ever make. Tomorrow and for all days henceforth, every decision will be made for you.
Would this be a welcome whisper? How would you feel the next day, year, and decades knowing that you would be a muted passenger on your own life’s journey? When you reach the age of 100, would you still be you?
Dreadfully, the overbroad application of guardianship and conservatorship statutes makes the midnight whisper a reality for many individuals with intellectual and developmental disabilities, cognitive impairments, dementia, psychiatric disabilities, traumatic brain injuries, older adults, and other vulnerable persons (collectively referred to in this article as “individuals with disabilities”). Too often, petitions for involuntary guardianship and conservatorship are granted without adequate scrutiny, based on the presumption that individuals with disabilities lack legal capacity to make decisions. As a result, individuals with disabilities are stripped of their liberty rights and subjugated to the will of the appointed guardian or conservator.
Supported decision-making is a legal concept that promotes self-determination and serves as an alternative to guardianship and conservatorship. The concept of supported decision-making first gained traction in the 2006 United Nations Convention on the Rights of Persons with Disabilities. Article 12 of the Convention recognizes that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” It further directs states to “take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” Thus, individuals with disabilities shall not be presumed to lack legal capacity, even if they require assistance in making decisions.
Following the United Nations Convention, supported decision-making began to take root as an alternative to guardianship and conservatorship, both nationally and internationally. Today within the United States, 31 states and Washington, D.C., have enacted supported decision-making legislation. This legislation generally takes two forms, referred to in this article as informal and formal supported decision-making.
Informal supported decision-making occurs when an individual relies on natural supports for assistance with life choices. Every day, people of all abilities seek the advice of family members, friends, lawyers, doctors, accountants, religious leaders, therapists, etcetera, to make decisions both big and small. In essence, informal supported decision-making recognizes that decisions are not made in a vacuum. Rather, decision-making is a dynamic process that is usually guided by the counsel of trusted advisors. Reliance on others for support does not connote incapacity; conversely, interdependence is germane to decision-making.
The Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act (UGCOPAA) incorporates the concept of informal supported decision-making. UGCOPAA defines supported decision-making as
“assistance from one or more persons of an individual’s choosing in understanding the nature and consequences of potential personal and financial decisions, which enables the individual to make the decisions, and in communicating a decision once made if consistent with the individual’s wishes.”
UGCOPAA identifies supported decision-making as a less restrictive alternative to guardianship and conservatorship, directing that a petition for guardianship or conservatorship shall be denied if the individual can make decisions with assistance. Today, 2 states have adopted UGCOPAA, and 7 more states have passed legislation that identifies supported decision-making as a less restrictive alternative to guardianship and conservatorship. Additionally, 8 states incorporate informal supported decision-making in statutes dedicated to non-discrimination in access to organ transplantation. Moreover, Connecticut, Texas, and Oregon have enacted legislation requiring that students be advised of supported decision-making as an alternative to guardianship and conservatorship as part of special education transition planning.
In addition to informal supported decision-making, 16 states and Washington, D.C., have enacted legislation that formalizes the supported decision-making process. Formal supported decision-making occurs when an individual creates a written agreement identifying the individual’s particular support needs and designating trusted individuals as supporters. Under some statutes, a supported decision-making agreement can be created by any adult, without restriction. Other statutes require that the agreement be created by an individual with a disability.
The statutes often (though not always) provide the capacity threshold for creating a supported decision-making agreement. Virtually all of the statutes require that the agreement be entered into “voluntarily,” while many also add “without undue influence or coercion.” The majority of statutes require that the agreement be signed by the individual and the designated supporters in the presence of two witnesses or a notary public. Some states, such as Texas and Delaware, have created model supported decision-making agreements.
For both formal and informal supported decision-making, the supporter’s role may include (but is not limited to) gathering information, presenting information in a manner that the individual understands, helping the individual to evaluate the pros and cons of different choices, providing communication assistance, and assisting the individual in implementing a decision. Importantly, a supporter is never authorized to make a decision for the individual. In this sense, a formal supported decision-making agreement is distinct from a power of attorney and advance directive because the supporter cannot exercise substituted judgment on behalf of the individual. However, it is often advisable for an individual to create a supported decision-making agreement in conjunction with a power of attorney and advance directive, given that the latter documents generally remain effective in the event of the individual’s incapacity.
The codification of supported decision-making in multiple states is a significant step in promoting the self-determination of individuals with disabilities. However, it is important to recognize that regardless of whether supported decision-making legislation has been expressly enacted, federal and state laws, as well as policy, arguably prohibit the implementation of guardianship or conservatorship for individuals capable of making decisions with assistance.
The American Bar Association (ABA) issued a Resolution finding that
“ABA policy, federal and state constitutions, the UGCOPAA, most state guardianship [and conservatorship] statutes, and, quite possibly, the Americans with Disabilities Act . . . embrace the principle of the least restrictive alternative.” (citing to Shelton v. Tucker, 364 U.S. 479, 493-94 (1960); and Olmstead v. L.C., 57 U.S. 581 (1999), among other sources).
Moreover, the National Probate Court Standards require consideration of less restrictive alternatives to guardianship and conservatorship, and the 2021 Fourth National Guardianship Summit urges the Department of Justice and federal and state agencies to recognize that supported decision-making is a reasonable accommodation under the Americans with Disabilities Act. In summary, various sources of law and policy support the conclusion that courts shall deny petitions for guardianship and conservatorship where the respondent is capable of exercising supported decision-making.
As lawyers, it is our duty to safeguard the autonomy of individuals with disabilities. To aid the legal community in this regard, the ABA published a step-by-step guide for incorporating supported decision-making into daily practice. The first step is to “presume guardianship [or conservatorship] is not needed.” By exercising this default presumption and exploring supported decision-making as a less restrictive alternative to guardianship and conservatorship, we collectively act as defenders of liberty and drive the unsavory midnight whisper deeper and deeper into the night.