Older Adults and Access to Justice WINTER 2019–20 volume 43 number 4

Journal of the American Society on Aging

Older Adults and Access to Justice

Parsing the people’s principle The perils and particulars of adult guardianship How to navigate civil rights protections for older adults

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GENERATIONS – Journal of the American Society on Aging

ASA & USC announce schedule of online courses for 2020 American Society on Aging and the University of Southern California, Leonard Davis School of Gerontology are partnering again to bring you five different 5-week courses. • Understanding Abuse and Neglect • Prevention of Abuse and Neglect • Fundamentals of Gerontology • Managing Health and Chronic Conditions in Older Adults • Advanced Concepts in an Aging Society Successful participants will earn a certificate of completion from USC, and CE credits are offered from select accreditation providers. Courses are offered April 20–May 22 and August 31–October 2.

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is the quarterly journal of the American Society on Aging.

Each issue is devoted to bringing together the most useful and current knowledge about a specific topic in the field of aging, with emphasis on practice, research, and policy.

Peer review consists of the following practice: the Genera- tions editorial board invites a guest editor, selected because of prominence within his or her subject area, to organize an issue of the publication around themes identified by the board. Authors are then proposed by the guest editor and are evaluated by the board on the basis of demon- strated knowledge, achievement, and excellence in their respec- tive fields. All manuscripts are reviewed by the guest editor, editor, and, when appropriate, members of the editorial board. As occurs in any peer review process, revisions may be re- quired, and articles that do not meet the editorial standards of Generations will not be published. Generations (ISSN 0738-7806) is published quarterly by the American Society on Aging, 575 Market Street, Suite 2100, San Francisco, California 94105-2869. The American Society on Aging (ASA) is the essential resource to cultivate leadership, advance knowledge, and strengthen the skills of those who work with, and on behalf of, older adults.

Subscription rates are as follows: for institutions, $136, either print or online; $171.50, both print and online (outside North America, online only offered). For individu- als, $93.50, both print and online (outside North America, online only offered). For access to indi- vidual articles from prior issues with powerful search capability, visit Ingenta Connect at http:// asag/gen . Individual copies of Generations can be purchased at online/members/createorder.asa . To purchase print or digital subscrip-

Postmaster: Send address changes to Generations , 575 Market Street, Suite 2100, San Francisco, California 94105-2869. The contents of Generations are indexed or abstracted in the following: Abstracts in Social Gerontology; AgeLine; CCCs Bibliographic Database; CARL UnCoverIngentaConnect; CINAHL Database (Cumulative Index to Nursing and Allied Health Literature); Current Contents/Social and Behavioral Sciences; Elsevier Bibliographic Databases; ERIC; Family & Society Studies Worldwide; Institute for Scientific Informa- tion Basic Social Sciences Index; Microsoft Academic Search (MAS); MLA International Bibliography; Research Alerts; SAGE Family Studies Abstracts; SCIE Care Data; Social Sciences Citation Index; Social SciSearch; Social Services Abstracts; Social Work Abstracts; Sociological Abstracts; Web of Science; Wilson Social Sciences Index/ Abstracts. For digital access to the current and back issues of Generations , visit Ingenta Connect at http:// asag/gen.

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GENERATIONS – Journal of the American Society on Aging

ASA Executive Committee Chair, Board of Directors Karyne Jones, Washington, DC Chair-Elect Michael Adams, New York, NY Secretary Jean Accius, Washington, DC Treasurer Lisa Gables, Alexandria, VA Member at Large Deborah Royster, Washington, DC ASA Board of Directors Ginna Baik, San Diego, CA Connie Benton Wolfe, Fort Wayne, IN Richard Browdie, Alexandria, VA


Alison Hood Senior Editor Alison Biggar Typography & Production Michael Zipkin | Lucid Design, Berkeley Generations cover and book design by Lisa Rosowsky, Blue Studio. Generations Editorial Advisory Board Wendy Lustbader Chair Susan C. Reinhard Immediate Past Chair Tobi Abramson Jean Accius Patrick Arbore David Bass

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Letia Boseman Louis Colbert Walter Dawson

Robert Espinoza, New York, NY Maria Henke, Los Angeles, CA Brooke A. Hollister, San Francisco, CA Karen N. Kolb Flude, Chicago, IL Daniel Lai, Hong Kong Rebecca C. Morgan, Gulfport, FL Scott Peifer, San Francisco, CA Kevin Prindiville, Oakland, CA Phil Stafford, Bloomington, IN Joyce Walker, Richmond Heights, OH Interim CEO Cynthia D. Banks, San Francisco, CA

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Kevin Prindiville Anne Tumlinson

Front cover image ©iStockPhoto/ Soubrette © 2019 American Society on Aging

Union Bug

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Older Adults and Access to Justice

ins ide generat ions Older Adults and Access to Justice

4 Our Guest Editor Charles P. Sabatino 6 Access to Justice: The People’s Principle By Charles P. Sabatino

how shi f t ing pol i cy dynami cs impact access to jus t i ce 67 Legal Services Are Under Stress, but Enduring By David Godfrey 73 Assessing the Federal Response to Elder Abuse, While the Opioid Crisis Rages On By Pamela B. Teaster, Brian W. Lindberg, and Haley B. Gallo 80 Human Rights and Aging By William B.T. Mock 87 Supported Decision-Making for Older Adults with Age-Related Cognitive Decline By Dari Pogach mode l s that suppor t bet ter access to jus t i ce 94 The Self-Help Center of the Utah State Courts: An Essential Component of Access to Justice By Mary Jane Ciccarello 99 The Medical–Legal Partnership Model: A Focus on Older Adults and Social Determinants of Health By Sarah Hooper 104 The WINGS Initiative: Supporting and Improving Alaska’s Guardianship System By Lisa Wawrzonek and Stacey Marz 108 Taking the Initiative: Office of the Cook County Public Guardian’s Financial

what to do when (access to) r i ght s go wrong 11 The Adult Guardianship Pipeline: Supports, Safeguards, and Off-Ramps By Erica F. Wood 18 Apply, Deny, Appeal: The Difficult Process of Claiming Disability Benefits By Kate Lang 25 Protecting Medicaid LTSS: By Judith A. Stein and David A. Lipschutz 38 Exercising Personal Health Information Access Rights By Linda L. Kloss 46 Managing a Nursing Facility Stay By Lori Smetanka 52 Getting What You Deserve in Assisted Living By Eric Carlson 59 Navigating the Patchwork of Civil Rights Protections for Older Adults By Kevin Prindiville and Denny Chan Appealing Denials and Terminations By Eric Carlson and Jennifer Goldberg 32 Surmounting Barriers to Medicare-Covered Care

Recovery Program By Charles P. Golbert

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GENERATIONS – Journal of the American Society on Aging

Our Guest Editor

Transforming the Invisibility of Age: A Legal Advocate Carries on the Cause of Elder Justice F or thirty-six years, Winter 2019–20 Generations Guest Editor Charles Sabatino has been working on access to

More to the point, since his frst job out of law school as an Older Americans Act–funded attorney in a legal aid office, Sabatino has been a passionate pro- tector of the rights of older adults, and takes every opportunity to gain visibil- ity for this work. “Through my clients’ eyes, the invisibility of old age became visible [to me], and I saw the brushing aside of impoverishment and disability, the deadening culture of nursing homes, age discrimination in the workplace, a multitude of threats to fnancial secu- rity, repeated erosions of independence, the lack of access to community sup- ports, and healthcare institutions that did not listen to my clients.” When an opportunity to join the staff of the ABA’s Commission on Law and Aging came along, Sabatino says, “it opened the door to working on access to justice issues of aging on a much larger scale.” Sabatino’s years at the ABA’s Com- mission on Law and Aging have led to a kaleidoscope of policy and practice chal- lenges in ever greater complexity and impact. “It has defnitely been gratifying to play some small role in major legisla- tive policy successes such as the Elder Justice Act, and, much further back, the Patient Self-Determination Act. “But the more meaningful changes are the cultural shifts that have been

justice issues around aging, ever since he joined the staff of the American Bar Asso- ciation’s (ABA) Commission on Law and Aging. Now, as director of the Commission, he heads up this multidis- ciplinary body of experts in aging, which was established to empower advocates, edu-

Breakneck change most threatens to leave behind the oldest, those with disabilities, and minorities. CHARLES SABATINO

cators, practitioners, clinicians, and pol- icy makers in their efforts to strengthen and protect the rights of older adults. To further this work, he was happy to accept ASA’s invitation to act as guest editor for this issue of the journal on aging and access to justice. As he noted, Generations reaches an audience that can really use the knowl- edge imparted in this issue: “So for me, guest-editing was an opportunity for creativity, sharing substantive con- tent, and having a practical impact. The motivation came naturally. “Having the opportunity to pull together so many authors on so many topics dear to my heart is a thrilling experience, kind of like composing and conducting a symphony played by some of the most talented musicians in the country,” he adds.

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gradual and variable, but real,” Sabatino says. He counts among these the empow- erment of patients’ voices in healthcare decision-making, the strengthening of legal capacity of individuals with dis- abilities, and prioritization of home- and community-based care options. And, he says that the work “has also become more personal as the reality of aging has become my own reality.” Sabatino is cognizant of the chal- lenges around access to justice for older adults that continue and will acceler­ ate with ever-rising age population growth, rapid changes in medical sci- ence, advances in technology, climate change, evolution of social norms, and our nation’s increasing diversity. “We have difficulty making access to justice real, even in the context of long- established institutions,” he says. He quotes Justice OliverWendell Holmes, who said, “It cannot be helped, it is as it should be, that the law is behind the times,” and observes that behaviors, conditions, and institutions that the law regulates have to come into existence frst, before the lawhas a chance to respond. “But as change accelerates, the law too often falls increasingly behind the times. This is most evident in matters such as privacy protections, new medi- cal therapies, and when major changes occur in safety net programs. “Breakneck change most threatens to leave behind the oldest, those with dis- abilities, and minorities,” Sabatino adds.

Going forward, Sabatino worries about the dearth of publicly funded and private attorneys concentrating on aging issues. But at the same time, he sees evi- dence of a growing awareness of elder justice and elder rights concerns across society; this awareness manifests in cur- rent and ongoing efforts to combat elder abuse and fnancial exploitation via di­ verse stakeholders in medicine, educa- tion, government, social services, and in the fnancial and legal sectors. The answer to helping fnd systemic solutions that strengthen and protect the rights and quality of life of older adults. “Breaking out of silos and reaching across disciplines and across cultures is a culture change process itself, and it is the only way to master the increasing complexity of a society that strives to be just,” he says. As Sabatino points out in his intro- ductory article to the issue (see page 6), all stakeholders need to play a role to ensure elders have access to justice— involvement that will help to shape the responsible institutions. “It will always be a work in progress,” he says. But, he adds, “on a societal as well as a personal level, there is no good aging without engaging.” —Alison Biggar and Alison Hood older adults to gain access to justice lies in collaboration between all of these stakehold- ers, to identify problems and

‘Through my clients’ eyes, the invisibility of old age became visible.’

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Access to Justice : The People’s Principle By Charles P. Sabatino

How access to justice shapes—and challenges— the civil lives of older adults.

A ccess to justice is a people’s principle imbued with fundamental human rights ideals, but as a practical matter, few people can articulate what it means in everyday life, especially with respect to older persons. This issue of Generations aims to provide an understanding of its varied shapes and challenges in the civil lives of older adults, and to empower those who serve elders to help facilitate access when it is most needed. Defining Access to Justice Access to justice is a core element of the rule of law, its parent concept. The Secretary-General of the United Nations defnes the rule of law as “a principle of governance in which all persons, institutions and entities, public and private, in­ cluding the State itself, are accountable to laws that are publicly promulgated, equally enforced and independently adjudicated, and which are consistent with international human rights norms and standards” (United Nations Security Council, 2004). A joint document of the U.S. Agency for International Development, the U.S. Depart- ment of State, and the U.S. Department of Defense (2009) adopts an identical defni-

tion. The defnition is rooted in the 1948 Univer- sal Declaration of Human Rights , which states, “. . . it is essential, if man is not to be compelled to have recourse, as a last resort, to rebellion against tyranny and oppression, that human rights should be protected by the rule of law . . .” (United Nations, 1948). Access to justice is the individual empow- erment and enforcement component of the rule of law, which depends upon individuals’ knowl- edge of their rights and access to tools to enforce those rights effectively and affordably. In the absence of access to justice, people are unable to have their voices heard, exercise their rights, challenge discrimination, or hold decision mak- ers accountable (United Nations, 2019). In the United Nations, access to justice has also been prominently recognized in the 2030 Agenda for Sustainable Development (United Nations, 2015). Seventeen sustainable develop- ment goals serve as a blueprint for peace and prosperity and as a call for action for all coun- tries. They recognize that ending poverty and other deprivations must go hand-in-hand with strategies that improve health and education, reduce inequality, and spur economic growth,

abstract The concept of access to justice is difficult for most people to articulate, especially as it relates to older adults. This article outlines its meaning, how various entities define and measure it, and details how this issue of Generations is organized around the American Bar Association’s Rule of Law Initiative conceptual framework. | key words : access to justice, rule of law, United Nations, human rights, World Justice Project, American Bar Association Rule of Law Initiative

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all while tackling climate change and preserving the environment. Access to justice is at the heart of Goal 16: “Promote peaceful and inclusive societies for sustainable development, provide access to jus- tice for all and build effective, accountable and inclusive institutions at all levels.” The United Nations Development Programme (UNDP) (2005) defnes access to justice as: “The ability of people to seek and obtain a remedy through formal or informal institutions of justice, and in conformity with human rights standards.” The UNDP further explains that access to jus- tice is “much more than improving an individual’s access to courts, or guaranteeing legal representa- tion. It must be defned in terms of ensuring that legal and judicial outcomes are just and equitable” (UNDP, 2005). It identifes the fve capacities that are needed to achieve access to justice—legal pro- tection; legal awareness; legal aid counsel; adjudi- cation; enforcement and oversight. While access to justice encompasses civil and criminal systems, this issue of Generations focuses on the civil side, wherein older people are likely to experience most of the rights, disputes, and options for resolution. Access to justice pro- vides an effective conceptual framework to thread together the articles and to highlight the practi- cal roles professionals of all disciplines can play to ensure that the rights of aging clients, patients, family, and friends are recognized and enforced. Measuring and Protecting Access to Justice Attempts have been made to measure the extent to which both the rule of law and access to jus- tice are experienced in various nations. The most notable of these is that of the World Justice Proj- ect (WJP, 2019a)—an international civil society organization working to advance the rule of law around the world—founded in 2006 as a presi- dential initiative of the American Bar Associa- tion, with the support of twenty-one partners. The WJP Rule of Law Index (WJP, 2019b) is an assessment tool designed to measure how the rule of law is experienced and perceived by

the public. With input from more than 120,000 households and 3,800 surveys in 126 countries and jurisdictions, the 2019 Index measures a country’s performance across eight rule-of-law factors: Constraints on Government Powers; Absence of Corruption; Open Government; Fun- damental Rights; Order and Security; Regulatory Enforcement; Civil Justice; and Criminal Justice. The 2019 Index rates the United States as ranking 20th, behind countries such as Denmark (1), Canada (9), Japan (15), and the Republic of Korea (18). The WJP also developed measures of grass- roots perceptions of access to justice as a sub- set of its rule of law surveys. Of 340 questions included in its population surveys for assessing the rule of law, more than a third address access- to-justice issues and have been extracted to cre- ate access-to-justice profles for 101 countries in its recent report (WJP, 2019a). The profles do not provide an overall score, but consist of six parts—legal problems; legal capability; sources of help; problem status; process; and hardship— providing a rich, bottoms-up picture of access- to-justice data for each country, based upon the population’s legal problems and their experi- ences in resolving or not resolving them. Another group directly involved in promot- ing access to justice is the American Bar Asso- ciation’s Rule of Law Initiative (ROLI), which works in more than 100 countries to strengthen legal institutions, support legal professionals, foster respect for human rights, and advance public understanding of the law and of citizen rights. ROLI developed an Access to Justice Assessment Tool (American Bar Association Rule of Law Initiative, 2012) to encourage civil society organizations to conduct research on access to justice and to design reforms and pro- grams to address key obstacles. The framework Access to justice is a core element of its parent concept, the rule of law.

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Element 2: Legal Knowledge. This ele- ment considers the extent to which citizens are aware of the legal framework, their rights and duties under it, and the mechanisms available for solving their problems under law. This issue of Generations is itself an example of a means to enhance that legal knowledge. However, private efforts are not enough. Government has an obli- gation to make its rules visible and the processes of law transparent. In our contemporary digital world, provid- ing information to citizens online is integral to the conduct of state government in the 21st cen- tury. The availability of government information online facilitates transparency and accountabil- ity, enabling widespread access and citizen par- ticipation in the democratic process. However, The 2019 World Justice Project Rule of Law Index rates the United States as ranking 20th, behind the Republic of Korea. because digital information is so easily altered as it moves through multiple servers and users, there is a need to provide and manage electronic government information in a manner that guar- antees trustworthiness and continued access. The Uniform Law Commission (2011) cre- ated the Uniform Electronic Legal Material Act, which provides states with a uniform, outcomes- based approach to accomplish that goal. The Commission is a body of legal professionals, legis- lators, and law professors, appointed by state and territorial governments to research, draft, and promote enactment of uniform state laws. Since its approval as a model in 2011, twenty-one states and the District of Columbia have adopted it. Element 3: Advice and Representation. Access to competent legal advice and representa- tion is in many ways the nucleus of access to jus- tice. Despite its centrality, it is persistently the most shortchanged in resources, especially for

echoes the access to justice capacities enumer- ated by the UNDP. Because it provides thoughtful, practical questions for understanding access to justice, the ROLI assessment tool offers a conceptually sound and practical way to connect the articles in this issue of Generations and reflects how the issue is organized. Rule of Law Initiative: An Organizing Framework for Articles in this Issue The Access to Justice Assessment Tool sets forth six elements, described below, essential to access to justice. Element 1: The Legal Framework. The frst eight articles highlight a range of common legal issues older persons face in everyday life and pro- vide “how-to” steps professionals can take to help prevent or resolve common problems. The arti- cles in Part 2 examine four areas in which law and policy are under considerable stress with respect to ensuring access to justice: legal assistance for older persons; elder abuse and exploitation; global human rights standards; and changing legal no­ tions of legal capacity. Part 3 spotlights four pro- grams representing new and promising models that directly impact access to justice. The range of laws and issues affecting older persons in the United States encompasses a vast array of legislative codes, regulations, and administrative and judicial case law. Not sur- prisingly, health and long-term-care rights and entitlements under law have an immense impact on the lives of older adults. Those legal frame- works are underscored in the articles in this issue of Generations that explain key compo- nents of federal laws (Medicare, Social Secu- rity, and Supplemental Security Income, nursing homes residents’ rights, health privacy rights); state laws (guardianship and assisted living); and both federal and state (Medicaid long-term supportive services). In addition to providing navigation tools to protect elders’ rights, these articles illustrate both strengths and weaknesses of those legal frameworks.

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‘All of us play a role in ensuring access to justice and in shaping the responsible institutions.’ Element 4: Access to Justice Institutions. This element focuses on both formal and infor- mal institutions available for the resolution of problems—specifcally their affordability, acces- poor and marginalized persons. Articles on legal services and medical−legal partnerships sketch a picture of both challenges and innovations. sibility, and timeliness in resolving problems. The articles in this issue examine a broad range of these institutions that consist not only of the courts, but also an array of administrative agen- cies at the state and federal levels. Element 5: Fair Procedure. This ele- ment asks, “To what extent do citizens have an opportunity to present their case effectively in a fair and impartial process?” The concern is closely linked to the availability of representa- tion because success is signifcantly enhanced (according to several of the authors in the issue) when individuals are represented by skilled advocates in appeals under programs such as Social Security, Medicare, and Medicaid, and especially in state guardianship proceedings.

Complexity raises fairness concerns when it dis- courages people from asserting their claims. Element 6: Enforceable Solution. The end- point of access to justice is a remedy that is fully implemented. That result depends upon the extent to which justice institutions are able to enforce their decisions and monitor the results. The articles describe a range of successes and shortcomings in enforcing and monitoring, from successful major recoveries from fnan- cial exploiters by a public guardian, to the ever- present reality that citizens ultimately must rely on self-advocacy. The take-home message of this Winter 2019−20 issue of Generations is that all of us play a role in ensuring access to justice and in shap- ing the responsible institutions. It will always be challenging, but each one of us can make a differ- ence. Dr. Martin Luther King, Jr. (1987) summed it up this way: “Human progress is neither auto- matic nor inevitable . . . every step toward the goal of justice requires sacrifce, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.” Charles P. Sabatino, J.D., directs the American Bar Association Commission on Law and Aging, in Washington, D.C., and is an adjunct professor at the Georgetown University Law Center, where he has taught a seminar on law and aging since 1987.

References American Bar Association Rule of Law Initiative. 2012. Access to Jus- tice Assessment Tool: A Guide to Analyzing Access to Justice for Civil Society Organizations . y6ovt3y7. Retrieved October 25, 2019. King, M. L. 1987. “Where Do We Go From Here?” In Stride Toward Freedom: The Montgomery Story . New York: Harper Collins.

Uniform Law Commission. 2011. Electronic Legal Material Act . Retrieved October 25, 2019. United Nations. 1948. Univer- sal Declaration of Human Rights . Retrieved October 25, 2019. United Nations. 2015. The Sustain- able Development Agenda: 17 Goals to Change Our World. y6wkm685. Retrieved October 25, 2019.

United Nations. 2019. “Access to Justice.” United Nations and the Rule of Law . Retrieved October 25, 2019. United Nations Development Pro- gramme (UNDP). 2005. Program- ming for Justice: Access for All—A Practitioner’s Guide to Human Rights–Based Approach to Access to Justice. Retrieved October 25, 2019.

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United Nations Security Council. 2004. The Rule of Law and Transi- tional Justice in Conflict and Post- Conflict Societies: Report of the Secretary-General, S/2004/616 . Retrieved October 25, 2019.

U.S. Agency for International Development, U.S. Department of State, U.S. Department of Defense, Security Sector Reform. 2009 . Security Sector Reform: USAID, DOD, DOS Policy Statement. Retrieved October 25, 2019.

World Justice Project (WJP). 2019a. Global Insights on Access to Justice . Retrieved October 25, 2019. WJP. 2019b. The WJP Rule of Law Index 2019 . Retrieved October 25, 2019.

Photo credits

Pg 4

Courtesy Charles Sabatino

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The Adult Guardianship Pipeline : Supports, Safeguards, and Off-Ramps By Erica F. Wood Knowing rights under the law is critical to ensure proper guardianship—or avoid it altogether.

P eople who work with older adults likely have seen the following six common scenarios that lead to guardianship: The medical crisis . Mrs. X, 87, is rushed to the hospital and stabilized. Critical medical decisions are needed, but she is unable to artic- ulate her wishes, has no advance directive, and no immediate family. The hospital fles for emer- gency guardianship. The family feud . Mr. Y, 82, has dementia. His two sons are arguing heatedly over their dad’s care, and use of his funds. Both fle for guardianship. The discharge . Ms. M, 93, lives at home but was admitted to the hospital, which now seeks to discharge her to a nursing home. She refuses to go to the nursing home, and the hospital fles for guardianship. The abuse . Ms. G, 80, lives with her grandson, who uses her Social Security checks to support his drug habit, and routinely neglects her needs. A neighbor suspects abuse and calls Adult Protec- tive Services (APS), which fles for guardianship. The eviction . Mr. B, 72, is a loner and a hoarder with mental health problems. He fails

to pay the rent on his apartment and the land- lord moves to evict him. A county social services agency fles for guardianship. The unpaid care bill . Ms. C, 90, lives in a nursing home. Her son in another state rou- tinely pays the nursing home bill, but recently has failed to do so. The nursing home fles for guardianship. Guardianship is “appointment by a court of one person or entity to make personal and/or property decisions for another whom the court fnds unable to do so” (Karp and Wood, 2007). Guardians may be family members, friends, professionals, private nonprofts, for-profts, or public agencies. Historically, guardianship was a protec- tive device for society to care for those need- ing help—individuals of all ages, but including many older persons. It often functions that way today, particularly when there are no other options, and guardians step in at crisis points. But in naming a guardian, the court removes fundamental rights and transfers them to the guardian, which virtually “un-persons” an adult

abstract Changes in decision-making abilities due to dementia or other causes may lead to guardian- ship—and a loss of fundamental rights. Guardianship often is seen as a panacea when older individuals have medical emergencies, family conflicts, elder abuse, or evictions. When faced with guardianship, it is impor- tant to know how the systemworks, and to seek legal representation. Asking the right questions at the beginning of a guardianship (prior to the court appointment) and after appointment can prevent unneces- sary or overbroad interventions, helping to ensure guardians are maximizing rights and quality of life. | key words : guardianship, decision-making abilities, dementia

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(Bayles and McCartney, 1987), stripping him or her of self-determination. Guardianship all too often is perceived as a “fx”—a ready solution to common scenarios that may stem from larger societal failures. Medical emergencies, family feuds, elder abuse, mental health problems, evictions, opposition of an older adult or adult with disabilities to plans for care—all of these can be fodder for a fast track to guardianship. As one New York elder law expert said, such situations “present signifcant problems and challenges; however, there is no reason that these thorny problems should necessar- ily be resolved by stripping individuals of their legal capacity . . . [through] the sometimes rela- tively casual way that guardianship is resorted to when problems concerning older adults arise” (Diller, 2016). Impacts of Guardianship Sometimes guardianship can be a good thing. When there are no other options, a guardian can stop elder abuse, apply for benefts, fnd a place for a needy older adult to live, obtain services and healthcare, and help the adult to make con- nections with the community. Consider the following case from New York City’s Vera Guardianship Program. The Program was appointed guardian for a 79-year-old bedbound woman with conges- tive heart failure who lived in a basement apart- ment that she owned. Her reverse mortgage was in default and pending foreclosure because her niece had taken the mortgage proceeds and fled. The apartment was unsafe and needed repair, and there were staggering unpaid utility bills. The woman wanted to remain in her home of forty years. The Program worked to settle the foreclosure action, set up utility payment plans, began making repairs, brought an action to recover the lost funds, and reported the fraud to the district attorney (Teaster et al., 2019). At the same time, guardianship is one of soci- ety’s most drastic interventions. Chairing an

early congressional hearing on guardianship, the late Sen. (D−FL) and Rep. Claude Pepper (D−FL) famously said, “The typical ward has fewer rights than the typical convicted felon . . . . By appoint- ing a guardian, the court entrusts to someone else the power to choose where they will live, what medical treatment they will get and, in rare cases, when they will die” (U.S. House Commit­ tee on Aging, 1987). While there is little evidence- Guardianship virtually “un-persons” an adult. based outcomes research, unnecessary guardian­ ship can have negative effects on well-being (Wright, 2010). Moreover, although there are few statistics, guardian performance ranges from heroic to suf- fcient to defcient to abusive, but the propor- tions have not been determined (Wood, 2012). An unknown number of guardians, highlighted in multiple press accounts, are bad actors. Both the U.S. Government Accountability Office and the U.S. Senate Special Committee on Aging have con- frmed selected cases of abusive guardians, but found insufficient data to quantify the problem (U.S. Government Accountability Office, 2016; U.S. Senate Special Committee on Aging, 2018). The key to getting justice in the guardianship system is legal counsel. An attorney can avoid unnecessary guardianship, narrow guardianship to only what is needed, and make sure the per- son’s voice is heard. Guardianship is a judicial process. There are Legal Representation: Leveraging Changes in the Process procedural steps according to state law and there is a court hearing. Several attorneys can be involved, and it is important to distinguish between their roles—the petitioner’s attorney, the “guardian ad litem” attorney, and the attorney for the individual. The job of the petitioner’s attorney is to put before the court the best evidence of why a guardian should be appointed. The job of a

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Older Adults and Access to Justice

Often, attorney fees are paid out of the per- son’s estate, but if the person is indigent, the state may pay. The lawyer who is appointed or retained may be a private attorney experienced in probate, elder law, or disability law. In many communities, legal aid receives Older Ameri- cans Act funds for legal assistance, which can include representing the individual in guard- ianship proceedings. Some states have senior legal hotlines that can help to identify sources of representation. Area agencies on aging or the Administration on Aging (Eldercare Locator) (Administration for Community Living, 2019) have information about such hotlines. Pre-Appointment Steps: What Can Be Done at the Front End If a client or family member is faced with a guardianship petition, there’s a good chance that a guardian will be appointed. But with an attor-

guardian ad litem attorney , required in many states (American Bar Association Commission on Law and Aging and Hurme, 2019), is to inter- view the adult, collect evidence, and report to the court on the need for a guardian. (In some states, instead of a guardian ad litem, there may be a non-lawyer investigator or “visitor.”) Here’s the critical point: a guardian ad litem does not represent the individual, but functions more as an investigative arm of the court. An attorney is still needed to zealously advocate for the wishes of the individual. Some state laws require the court to appoint such an attorney (American Bar Association Commission on Law and Aging and Hurme, 2019). However, sometimes the difference be­ tween the role of the attorney as advocate and as guardian ad litem is unclear in the law and in practice—and it can be difficult to tell which role the attorney is playing.

The Checklist: What to Ask When Faced with Guardianship Prior to the guardian’s appointment:

√ Does the person have a trusted agent under a financial power of attorney? √ Does the person have a representative payee for government benefits? √ Does the person have an advance directive for healthcare? √ Does the person have family members who could make healthcare decisions? √ With help from supportive people and services, could the person make some or all decisions for themselves? √ Did the person receive notice of the guardianship petition that complies with state law? √ Does the person have counsel to represent them for the guardianship proceeding? If not, is there a legal services or private attorney who can represent them? √ Can the person attend the hearing? √ Is there a recent doctors statement about the person’s abilities and limitations? √ Is there evidence from family members or others that would be important for the judge’s decision? Affecting the guardian appointment and order: √ Who should be the guardian? √ Can the guardian’s authority be restricted to certain kinds of decisions? √ If a guardian is needed, does the person have a preference for who should serve? √ Does the guardian have a plan for services and finances? √ Can the guardian’s financial authority be restricted to a certain amount or certain funds? After the guardian has been appointed: √ Does the guardian have a bond? √ Does the guardian regularly submit reports and accountings to court? √ Is there a need to make a complaint to court against the guardian, or report to APS or to law enforcement? √ If things change, can the guardianship be ended and the rights restored?

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GENERATIONS – Journal of the American Society on Aging

ney’s help, while the guardianship train may be barreling ahead, there are procedural safeguards and off-ramps that can influence what happens. Support the Person in Making Decisions. Sometimes an individual already has support- ive people and services that allow them to make their own decisions with help—or these sup- ports can be put in place. For example, a family member comes to live with the person and helps them to make and to communicate decisions— or the person moves to a more supportive envi- ronment with friends and professional help. Bring evidence of this “supported decision-mak- ing” to the court’s attention to show a guard- ianship may not be needed or can be narrowed (Blanck and Martinis, 2015; for more on suppor­ ted decision-making, see Dari Pogach’s article on page 87). Screen for Less Restrictive Options. In addition to naming supports, identify or put in place a legal option that is less restrictive than guardianship (Wood, 2018; American Bar Asso- ciation, 2017). Most state statutes direct the court to fnd that such options have been considered An attorney is needed to zealously advocate for the wishes of the individual. before appointing a guardian (Blecher, 2018). For instance, the person may have designated an agent under a healthcare or fnancial power of attorney—or may still have the ability to do so. The Social Security Administration may have authorized a representative payee to man- age benefts—and if there are no other assets, this should make a guardian of property unnec- essary. Under many state laws, selected family members can make certain healthcare decisions without the need for a guardianship or health- care power of attorney. Check for Procedural Compliance. Guard- ianship is a complicated process. There are state laws and court rules that require strict compli-

ance with procedures. An attorney can check to see if the rules were followed and, if not, can have the petition set aside or delayed. For instance, a case may be stopped in its tracks if the notice is not in proper form, not properly served on the individual, or not within the statu- tory timeframe. Get the Evidence Needed. Evidence is at the heart of a court fnding that a person is “inca- pacitated” and needs a guardian. Evidence can include a clinical statement about the person’s condition and abilities, as well as “lay” or non- professional evidence of how the person functions on a day-to-day basis. Make sure the clinician is qualifed to make such an assessment, that the statement does more than simply name a medi- cal condition, and that the clinician has examined the person recently. Help to uncover appropriate evidence by fnding case workers, family mem- bers, friends, or neighbors who can describe the person’s ability to care for himself or herself and make at least some fnancial decisions. Affecting the Appointment and Order While the court may decide a guardian is needed, there are important considerations about who should be the guardian, the scope and specifcity of the order, and the plans for care. Who Should Be Guardian. The petitioner may ask to be appointed as guardian, may name another person or entity, or the court may iden- tify someone to serve. The court may name a family member who knows the person well—or a professional “stranger” guardian if there is no one else to serve or if family members are argu- ing. If there is a choice, many states require the wishes of the person to be taken into account. Limit the Order. An in-depth assessment often can show that the person has decision-mak- ing abilities in some areas, at least with support. Maybe the person can make healthcare or resi- dential decisions, manage cash on a daily basis, or control limited amounts of money, but cannot make major investments. If so, the court can write a “limited order” specifying the rights retained.

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Older Adults and Access to Justice

What Will the Guardian Do. The court order may name specifc actions the guardian should take. Additionally, some states require the guardian to submit a plan of care or a proposed budget for managing fnances. The plan could include a change in residence, proposed medi- cal care, or sale of property. Find out if a plan is required, and if the individual as well as speci- fed third parties will receive notice of the plan and have an opportunity to influence it. What Safeguards Will Protect Assets? The court may order the guardian to secure a bond, which is like an insurance policy to protect the person’s money and property against guard- ian malfeasance or exploitation. Alternatively, the court may restrict the amount of assets available to the guardian. If the guardian needs an amount over what is named in the order, the guardian must request specifc court approval. Post-Appointment Steps: Opening Doors at the Back End Just because a guardian has been appointed does not mean the case is over. In fact, in some ways the case is just beginning. There are essential steps that can still affect the case. Review Guardian Reports and Accounts. All states require a guardian of the person to fle with the court annually, or periodically, a report on the person’s well-being, and a guardian of the property to fle an accounting. Courts generally provide forms for the report and accounting. The individual and others named by the court should receive a copy of the report or accounting, and can challenge it if there are errors, omissions, or inconsistencies. File a Complaint; or Request Court Action. A few states require—and some courts provide—a specifc process to make a complaint against the guardian without a formal legal motion (American Bar Association Commission on Law and Aging, 2017). Even if there is no such process, the court may respond to an infor- mal complaint, and may investigate. Or more for- mally, an attorney can fle a motion asking the

court to examine the guardian’s actions, to audit the accounts, or to take a specifc action like allowing family member visits. Report Abuse, Neglect, or Exploitation. It is important to contact the court if the guard- ian is suspected of abuse, neglect, or exploi- tation. However, one cannot rely only on the court, and should make a report to APS. Any- one named by state law as a mandated reporter is required to report immediately. In addition, it is important to contact law enforcement. A guard- ian who breaches his or her duties may violate state or federal laws—such as laws against elder abuse, embezzlement, fnancial exploitation, fraud, neglect, theft, or more. If the guardian is an attorney, the state lawyer disciplinary com- mittee should be contacted. If the state certifes professional guardians, contact the state certif- cation agency (Hurme, 2018). Use Civil Legal Remedies. Outside of the guardianship system, there are various civil actions that can apply to abusive guardians. For instance, a state may have statutory actions for breach of fduciary duty, breach of contract, void- ing of documents due to fraud or undue influ- ence, and more. Seek Restoration of Rights. Finally, the court could terminate the guardianship and restore the rights of the individual. This could occur under three scenarios: the person’s con- dition has improved; the person’s supports have improved; or there is additional evidence to show the person does not need a guardian (Wood, Teaster, and Cassidy, 2017). For example, recently in the District of Columbia, the guardianship of an 87-year-old woman was terminated when she convinced the court that with help from other people in her life and supportive services she could make her own decisions (Vargas, 2018). Conclusion While guardianship often can provide needed help in a crisis, it is a drastic intervention that removes fundamental rights. Once the guard- ianship process has begun, it can be difficult to

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GENERATIONS – Journal of the American Society on Aging

stop or to divert, but knowing the system and asking the right questions can influence the out- come. For instance, in this article’s introductory ‘The court could terminate the guardianship and restore the rights of the individual.’ scenarios, a search might reveal a relative who could consent to Mrs. X’s medical treatment; and mediation might address the feuding of Mr. Y’s sons. A guardianship order for hospital dis- charge and admission to a nursing home for Ms. M could be limited in scope and duration.

If guardianship ceases to be seen as a “quick fx” for social problems, creative solutions may emerge, and if judicial intervention is needed, it could be curtailed to preserve rights. Erica F. Wood, J.D., is the assistant director at the American Bar Association Commission on Law and Aging, in Washington, D.C. Author’s Note States’ terminology varies. In this article, the generic terms “guardian” or “guardianship” re­ fer to guardians of the person as well as guard- ians of the property, called “conservators” in many states, unless otherwise indicated.

References Administration for Community Living. 2019. “Eldercare Locator.” Retrieved September 16, 2019. American Bar Association Com- mission on Law and Aging. 2017. “State Statutes and Court Rules on Guardianship Complaint Processes.” tiny.url/yymcljb3. Retrieved September 16, 2019. American Bar Association Com- mission on Law and Aging, Com- mission on Disability Rights, Section on Civil Rights and Social Justice, and Section on Real Prop- erty, Trust and Estate Law. 2017. PRACTICAL Tool for Lawyers: Steps in Supporting Decision- Making. . Retrieved September 16, 2019. American Bar Association Com- mission on Law and Aging and Hurme, S. 2019. “Representation and Investigation in Guardianship Proceedings.” 5say. September 16, 2019. Bayles, F., and McCartney, S. 1987. “Guardianship of the Elderly: An Ailing System.” Associated Press , September 20.

Blanck, P., and Martinis, J. 2015. “The Right to Make Choices: The National Resource Center for Supported Decision-Making.” Inclusion 3(1): 24–5. Blecher, H. 2018. “Least Restric- tive Alternative References in State Guardianship Statutes.” Washing- ton, DC: American Bar Association Commission on Law and Aging. Retrieved September 16, 2019. Diller, R. 2016. “Legal Capacity for All: Including Older Persons in the Shift from Adult Guardianship to Supported Decision-Making.” Fordham Urban Law Journal 43(3): Article 2. Hurme, S. 2018. “State Guardian- ship Certifcation.” Washington, DC: American Bar Association Commission on Law and Aging. Retrieved September 16, 2019. Karp, N., and Wood, E. 2007. Guarding the Guardians: Promis- ing Practices for Court Monitor- ing ( #2007-21). Washington, DC: AARP Public Policy Institute.

Teaster, P., et al. 2018. Incapaci- tated, Indigent, and Alone: Meeting Guardianship and Decision Support Needs in New York . New York: The Guardianship Project, The Vera Institute of Justice. U.S. Government Accountabil- ity Office. 2016. Elder Abuse: The Extent of Abuse by Guardians Is Unknown, but Some Measures Exist to Help Protect Older Adults. GAO- 17-33. Retrieved September 16, 2019. U.S. House Committee on Aging. 1987. Abuses in Guardianship of the Elderly and Infirm: A National Dis- grace . H.R. Rep. No. 100–641. U.S. Senate Special Committee on Aging. 2018. Ensuring Trust: Strengthening State Efforts to Over- haul the Guardianship process and Protect Older Americans . tinyurl. com/y6ph9unb. Retrieved Septem- ber 16, 2019. Vargas, T. 2018. “At 87, She Helped Save a Freedom Dear to All.” The Washington Post , June 28.

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