Introduction 495 I. Adult Guardianship After Recent Reforms 500 A. The Mechanism of Guardianship 500 B. Recent Reform Efforts 504 II. Development of Supported Decision-Making and the Right to "Legal Capacity" 511 A. The Development of a Right to Legal Capacity 512 B Support in Practice 515 III. Supported Decision-Making and the Right to Legal Capacity for Older Adults 520 IV. Towards A Normative Justification of Supported Decision-Making for Older Persons 524 V. But Can It Work? Testing the Theoretical Against Practice 529 A. Tangible Benefits of the Right to Legal Capacity for Older Adults 529 B. Outstanding Questions 533 Conclusion 537 INTRODUCTION
Adult guardianship is the state law process by which a court appoints a surrogate to make decisions for an adult who is deemed "incapacitated," frequently by virtue of intellectual disability, mental illness, or cognitive impairment. (1) Once an individual is under guardianship, she loses her rights to make basic decisions about her life, including where she lives, how to spend her money, and whether to consent to health care. (2) For the last several decades, guardianship has been the subject of continual calls for reform, often spurred by revelations of guardian malfeasance and other abuses in the system. (3)
Recent developments in international human rights law and disability rights advocacy, however, pose a more fundamental challenge to the institution. Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), (4) with its declaration that everyone, regardless of mental disability or cognitive impairment, is entitled to make decisions and have those decisions recognized under the law, offers no less than a promise to end adult guardianship as we know it. (5)
Under Article 12, governments may not deprive individuals of their "legal capacity," or right to make decisions and have those decisions recognized, on the grounds of disability or impaired decision-making skills. (6) Instead, cognitive and other mental disabilities trigger a right to "support" in decision-making. (7) This support can take the form of accessible formats or technological assistance in communication. (8) Or it can take the form of "supported decision-making" arrangements, in which "supporters" assist individuals with decision-making in relationships of trust. (9) In whatever form, the support is an appropriate accommodation that enables the individual to enjoy the right to legal capacity. (10)
The United States signed, but, somewhat notoriously, has not ratified the CRPD. (11) Nonetheless, the concept of "supported decision-making" has generated significant excitement among disability rights advocates. The federal Department of Health and Human Services' Administration for Community Living, which promotes independent living for persons with disabilities and older adults, has endorsed the concept and funded a national resource center on the topic. (12) Pilot projects to provide supported decision-making services continue to spring up around the country. (13)
But as proponents of supported decision-making have made significant inroads in persuading the disability rights community that guardianships should be supplanted by this more rights-based alternative, questions persist about how it could and should work in practice. Nina Kohn and others have pointed to a dearth of empirical data on how supported decision-making actually functions to support the normative and ethical arguments for it. (14) Advocates are beginning to address those critiques by developing assessment tools for emerging pilot projects. (15)
Perhaps the most significant hurdle in shifting opinion toward supported decision-making is developing an argument for it that addresses the particular concerns of a significant, and likely growing, segment of those under guardianships: older persons, many of whom have cognitive impairments such as dementia. Older persons are believed to comprise a majority of the persons under guardianships (16) but, to date, their particular concerns have not been a central part of the legal capacity discussion. Supported decision-making has its roots in the disability rights movement. (17) Mental health consumers have also embraced the concept as a means of preserving their rights to make decisions about medical treatment and their lives. (18)
However, if supported decision-making is to take hold and supplant guardianship, attention must be paid to older persons and the particular ways that they might benefit from the shift. The legal model cannot change unless it makes sense to, and offers improvements for, the majority of people subject to it. Indeed, the aging of the population and the increase in Alzheimer's disease and dementia threaten to place a greater amount of older persons at risk of guardianship. The Alzheimer's Association predicts that the annual number of new cases of Alzheimer's and other dementias is expected to double by 2050. (19) Supported decision-making and/or other alternatives must be attractive and viable options if, for them, guardianship is to be supplanted, or at least minimized in its use. Without that embrace by older adult advocates, the movement toward supported decision-making is likely to stall or leave out a large portion of the population potentially subject to guardianship. (20)
This Article argues that the paradigm shift away from guardianship to a right to legal capacity can and should apply to older persons who would otherwise be at risk of guardianship. But, in order for it to take root, the theoretical underpinnings of the right to legal capacity should be expanded to more fully encompass the experience of older persons who would otherwise be at risk of guardianship. Proponents also need to grapple with legitimate hesitations and objections concerning potential for abuse, as well as practicability. This Article attempts to fill in those gaps by offering a normative argument for supported decision-making rooted in the particular concerns of older adults facing the loss of their rights. It then suggests a number of contexts in which a shift away from guardianship for older persons may be achieved most readily.
Part I describes guardianship and its limitations, even after the most recent wave of reform, which emphasized some preservation of autonomy for those with impaired decision-making abilities. Part II traces the emergence of the right to "legal capacity" and the development of supported decision-making as a replacement for guardianships in the intellectual disability community. Part III compares the concerns of older adults at risk of guardianship to those of persons with intellectual disabilities and describes the ways in which their interests and concerns with regard to legal capacity overlap and diverge. Part IV sketches out a normative justification for preserving the legal capacity of older adults. Finally, Part V discusses the practicability of moving toward a supported decision-making model. It identifies ways in which the availability of a supported decision-making model can offer tangible benefits and identifies areas where further thinking is needed.
ADULT GUARDIANSHIP AFTER RECENT REFORMS
In order to understand what supported decision-making and the right to legal capacity (21) can offer older persons, as well as the backdrop of what they might replace, it is first necessary to consider the current state of guardianship law and practice. This part describes the basic process of guardianship, and then discusses the most recent round of reforms that began nearly thirty years ago in the wake of media accounts of widespread exploitation and abuse in guardianship. It then concludes that reforms have only been a limited success in that practice has not conformed to legal changes that were supposed to preserve autonomy for persons under guardianship.
The Mechanism of Guardianship
Adult guardianship is a state law process, often occurring in probate court. It is the legal system's response to an adult who is or becomes mentally "incapacitated" and is deemed unable to make legally binding decisions. (22) Most definitions of incapacity require 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. (23) The central premise of guardianship is that the law will protect the person by appointing a surrogate to protect her from either her bad decisions or her inability to make decisions. (24) Guardianship removes the legal right of the incapacitated person to make decisions and vests that right with a surrogate. The person under guardianship ceases to be "a legal actor" whose decisions receive legal recognition. (25)
Guardianships have typically affected three main groups: (1) older adults with cognitive impairments, such as dementia and, to a lesser extent, those living with stroke-related conditions; (2) persons with intellectual disabilities; and (3) persons with psychosocial disabilities. (26) In recent years, as more attention has been brought to traumatic brain injury, that too has been counted as an impairment giving rise to guardianship. (27) Of course, an individual may fall into not just one but also two or three of these categories at the same time or over the course of a lifetime. Under many guardianship regimes, particularly now that many states use a functional assessment approach to incapacity determinations, 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. (28)
The removal of decision-making power is a significant deprivation of individual rights. (29) Once under guardianship, persons may lose the right to choose where they live, (30) how they spend their money, (31) with whom they spend their time, and with whom they have...