MODEL LANGUAGE FOR SUPPORTED DECISION-MAKING STATUTES.

• Author: Phillips, Rachel Mattingly

INTRODUCTION

Approximately 16.1 million Americans over fifteen years old had a "reported mental, cognitive, or emotional disability" in 2005, (1) and nearly 50 million Americans are affected by neurodegenerative conditions each year. (2) Such disabilities can lead courts to determine that these individuals are incompetent--incapable of managing their own affairs. (3) When such a determination is made, the Western legal tradition imposes an obligation on the State as parens patriae, or "parent of the country," to protect that person and their property. (4) In practice, the State often imposes guardianship on people whose disabilities interefere with their decision-making ability, thereby entrusting another person with decision-making on their behalf. (5) People with disabilities, activists, and scholars have critiqued the guardianship system for not doing enough to investigate the actual limitations of those subjected to guardianship and for denying too many of their rights. (6) As respected jurist Judge Cardozo wrote, "[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body." (7) Guardianship exposes the tension between protecting an individual's best interests (from the view of the State) and recognizing the right to self-determination and decision-making.

Supported decision-making offers a different approach to balancing the rights of the individual with the State's obligation to protect people with disabilities. Put simply, the person with a disability retains decision-making authority over their own life and receives any necessary decision-making assistance from others per a voluntary agreement. (8) While advocates initially promoted the model primarily for use by people with intellectual or psychosocial disabilities, (9) there has been a trend to extend its use to other groups, such as older persons (10) and people with dementia. (11)

In light of the growing interest in supported decision-making, this Note examines existing supported decision-making statutes to propose model language that best serves people with disabilities. Part I of this Note provides a brief introduction to medical and legal determinations of capacity or competency. These concepts are necessary to understand the circumstances in which guardianship and supported decision-making agreements apply. Part II of this Note then explores the use and history of substituted decision-making, specifically guardianship, and the subsequent development of supported decision-making as an alternative. Part III delves into an analysis of existing statutes on supported decision-making, considering how each answers several key questions: What is required of the principal to enter a supported decision-making agreement? How does supported decision-making relate to guardianship? What is required of the supporter? And finally, what is the role of the State? Part IV takes up these questions again, but this time proposes model statutory language to suggest how legislatures should answer them to better serve people with disabilities.

1. DETERMINING MEDICAL CAPACITY AND LEGAL COMPETENCY

   For the purpose of this Note, capacity will be treated as a medical determination and competency as a legal one; in reality, the terms are often used interchangeably. As a medical determination, "capacity" is found by physicians and psychiatrists (12) and is best understood as existing on a continuum (13)--capacity can range from high to average to low and may vary based on context. "Competency," however, is a legal determination often made by probate courts (14) and exists as a binary (15)--a person is either competent or incompetent. Judges, then, must decide at which point on the capacity continuum an individual moves from competent to incompetent. (16) As will be seen, both determinations have tremendous implications for individual rights, and the methods by which these determinations are made are subject to strong criticism. (17)

   1. Medical Determinations of Mental Capacity

      Individuals use a variety of skills to manage their affairs, and these skills--including "memory, reasoning, judgment, and decision making"- collectively form mental capacity. (18) Capacity exists on a "continuum" as it may vary across skills and over time. (19) Adults are assumed to have capacity, (20) so physicians are unlikely to evaluate an individual's level of capacity "without cause." (21) When an evaluation is considered necessary, it generally focuses on the individual's capacity to make a specific decision or perform a specific action. (22) Although evaluations vary, four criteria are commonly considered: (23)

      1. The ability to "maintain and communicate a choice or decision," (24)

      2. The ability to "understand relevant information," including the ability "to recall the information" and "to comprehend the meaning of the information provided," (25)

      3. The ability to "appreciate his or her situation," in that the individual can "apply the consequences of a decision or action to her circumstances," (26) and

      4. The ability to apply the individual's own values to the information provided in reaching a decision, called "[r]ational manipulation." (27) Researchers consider capacity to be "a domain-specific and risk-sensitive concept." (28) Domain-specific means capacity can vary across different decisions or actions, (29) so an evaluation must consider the types and level of skills needed for the decision or action being assessed. (30) For example, the abilities necessary to drive a car safely to a familiar destination are different than the abilities necessary to plan a budget, so an individual may have capacity in one domain and not the other. Risk-sensitive means that "the threshold for capacity should be adjusted to the risk-benefit profile of the decision." (31) For example, driving a car and driving a riding lawnmower require a similar set of skills, but the risks involved are different. To the extent that driving a car is higher risk because it involves greater speeds and more interactions with other drivers, it requires a higher degree of capacity. (32)

      Capacity evaluations face a number of criticisms. The most significant is that "clinical judgments of capacity can often be inaccurate, unreliable, and even invalid." (33) So far there is no consensus on what criteria to evaluate to determine capacity, (34) so assessment tools themselves differ and cannot be validated. (35) Different doctors using the same assessment tools, or the same doctor using different assessment tools, may reach different conclusions regarding an individual's capacity, particularly with regard to appreciation and reasoning. (36) The choice of competency assessment or doctor may therefore be the true determinative factor in an evaluation's outcome. (37) In addition, "it is not at all clear that persons with typical decision-making abilities and no disabilities would be found to have capacity if formally evaluated," (38) which further undermines the legitimacy of restricting an individual's rights based on such an evaluation. (39) Finally, despite the decision-specific nature of capacity assessments, the tests do not always account for the context of the actual decisions, which means that these tests may not make an accurate prediction of decision-making capacity in real-life situations. (40)

      To the extent these assessments provide at least some basis for determining capacity, it is of additional concern that clinicians do not always engage in a formal evaluation to make a finding of incapacity before removing a patient's decision-making authority. (41) Instead, these clinicians base their decision on "history, diagnosis, disability, age, appearance, behaviour or the fact that someone was making an unwise decision." (42) For example, doctors have presumed that dementia patients are incapacitated after conducting only an informal assessment or no assessment at all. (43) If a physician reaches a finding of incapacity, they may turn to other sources (such as an advance directive or surrogate decision-maker) for medical decisions. (44) A finding of incapacity can also be used to inform a legal determination of incompetency.

   2. Legal Determinations of Competency

      Incompetency is usually determined after a family member, friend, or agency files a guardianship petition following some event that suggests a potential need for guardianship, such as "an acute illness, financial mismanagement, or institutional placement." (45) Physicians or mental health professionals may then file reports that evaluate the individual's "medical condition, cognitive and functional capacities, attempts to increase capacity, and level of supervision needed" as part of the guardianship process. (46) Court personnel (e.g. a court investigator or guardian ad litem) may make a separate evaluation, and the individual as well as family members, friends, and other sources may provide input as appropriate. (47) A probate judge makes the final determination of competency when deciding the guardianship petition. (48)

      For a judge to hold that an individual is incompetent usually "require[s] two findings: (1) the individual is at risk of harm because of an inability to provide for personal or financial needs; and (2) the individual lacks the cognitive ability to understand and appreciate decisions." (49) In determining incompetency, "the individual's particular diagnosis or condition is not supposed to be determinative; what is supposed to matter is the functional ability to make decisions." (50) If a judge determines that an individual lacks the capacity to manage her own medical, financial, and daily affairs, the judge will find that person incompetent (51)--at which point the person loses the legal right to manage those affairs. (52) Unlike in the medical context, where physicians evaluate capacity in relation to a specific activity, in the legal context, judges usually evaluate competence on an...