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quinn-1.qxd 10/7/2004 1:58 PM Page 1 Chapter 1 Introduction to Guardianship THE BLIND MEN AND THE ELEPHANT BY JOHN GODFREY SAXE American poet John Godfrey Saxe (1816–1887) based the following poem on a fable that was told in India many years ago. It was six men of Indostan To learning much inclined, Who went to see the Elephant (Though all of them were blind), That each by observation Might satisfy his mind. The First approached the Elephant, And happening to fall Against his broad and sturdy side, At once began to bawl: God bless me! but the Elephant Is very like a wall! The Second, feeling of the tusk, Cried, Ho! what have we here So very round and smooth and sharp? To me tis mighty clear This wonder of an Elephant Is very like a spear! The Third approached the animal, And happening to take The squirming trunk within his hands, Thus boldly up and spake: I see, quoth he, the Elephant Is very like a snake! 1 quinn-1.qxd 10/7/2004 1:58 PM Page 2 2 Guardianships of Adults The Fourth reached out an eager hand, And felt about the knee. What most this wondrous beast is like Is mighty plain, quoth he; Tis clear enough the Elephant Is very like a tree! The Fifth, who chanced to touch the ear, Said: Een the blindest man Can tell what this resembles most; Deny the fact who can, This marvel of an Elephant Is very like a fan! The Sixth no sooner had begun About the beast to grope, Than, seizing on the swinging tail That fell within his scope, I see, quoth he, the Elephant Is very like a rope! And so these men of Indostan Disputed loud and long, Each in his own opinion Exceeding stiff and strong, Though each was partly in the right, And all were in the wrong! Moral: So oft in theologic wars, The disputants, I ween, Rail on in utter ignorance Of what each other mean, And prate about an Elephant Not one of them has seen! (San Francisco State University College of Ethnic Studies, 2002) The subject of guardianship has long been a source of confusion and even conflict among attorneys, health and social services practitioners, judges, families, and the adults with diminished capacities and physical and/or mental impairments who find themselves the subjects of guardianships in the United States. Attorneys in in private practice rou- tinely file petitions with courts to establish guardianships. Attorneys in quinn-1.qxd 10/7/2004 1:58 PM Page 3 Introduction to Guardianship 3 academia and those oriented to civil liberties point out the lack of mean- ingful due process protections and the very serious and far reaching dep- rivations of personal freedom in guardianships. Medical and social serv- ice workers seek guardianships, sometimes in desperation, to protect impaired people they feel are in jeopardy from abuse by others or simply unable to take care of the necessities of life. Families are confused about what to do, unable to grasp that a loved one, perhaps one who has al- ways dominated the family, is now losing capacity or has been abused by other family members or by strangers. Judges try to make cogent and measured decisions about the need for guardianship or possible alterna- tives to guardianship in the absence of sound and measured information from petitioners. Judges must also deal with laws that are generalized as well as the lack of adequate court staff to implement judicial safeguards both before and after a guardianship is established. The person who is the focus of all this attention may be aware that her personal and financial affairs are slipping out of her control and she may be bewildered, distressed, and frightened. On the other hand, many adults with diminished capacity who are coming into guardianship are not aware that it is happening because their disabilities are so severe. Others are grateful that at last, someone is taking charge and will help them. Some fight it with all their financial resources despite clear and convincing evidence that they desperately need the protection that only a guardianship can provide. Very little information is generally available about guardianships. For example, states do not keep statistics on guardianships. Conse- quently, we do not know with certainty how many guardianships there are in the United States at any given time. A study done in six states found petitions for guardianship were filed in 1979 at the rate of 1 for every 1,706 persons. This represented .059% of the population in those states. Most likely, nearly all the petitions resulted in the establishment of a guardianship. If those same statistics are applied to the entire United States, it would mean that that over 1,000,000 petitions for guardianship were filed in 1979 (Schmidt, 1995). The Associated Press studied guardianships nationally in 1987 and estimated that there were 300,000 to 400,000 guardianships at that time (Bayles and McCartney, 1987). This seems like a conservative number now, given what we know about the numbers of adults with diminished capacities, especially the growing numbers of elders. The process of establishing a guardianship, guardian- ship law, court procedures. and the role of attorneys can seem in- scrutable. Judicial decisions may seem arbitrary, incomprehensible, and unfair. Attorneys who represent the person who is appointed to be the guardian are knowledgeable about guardianship law but understand- ably not trained to assist guardians with placement decisions or medical quinn-1.qxd 10/7/2004 1:58 PM Page 4 4 Guardianships of Adults decisions. The functions of a guardian are not defined specifically in guardianship law. Many but not all courts provide training for guardians in the form of handbooks and videos. As a result of this lack of clarity, guardians can be very isolated and uninformed and may handle their re- sponsibilities inappropriately. Some guardians, puffed up with the power of a court appointment, become autocratic and dismissive of oth- ers who are involved with the disabled adult or elder. Other guardians perform heroically and beyond the call of duty. Still others are creative in extraordinary ways and all practitioners can learn from them. Sadly, some guardians become abusive or neglectful. Medical and social service practitioners may not know how to work with guardians or what to do if a guardian is abusive or neglectful, or less than knowledgeable. They may not know what the actual responsi- bilities of the guardian are. The guardian or the attorney for the guardian may be intimidating to the practitioner. Not knowing court procedures and oversight responsibilities, practitioners can feel realistically helpless in providing optimal care for an adult with disabilities who is in guardianship. Practitioners may not know how to communicate with the court. For instance, a practitioner may have vital information about a proposed guardian or the person who is the subject of the guardianship but not know how to convey that information to the judge who is making the decision about guardianship. Practitioners may lack information about legal terminology, court procedures, and protocols. Adding to this confusion, state laws vary as to the criteria for guardianship, the process of establishing a guardianship, who may serve as guardian, and how a guardianship is monitored. National guidelines for all aspects of guardianship exist but states can choose to adopt them whole, in part, or not at all. The Uniform Guardianship and Protective Pro- ceedings Act, drafted by the National Conference of Commissioners on Uniform State Laws (NCCUSL), provides meaningful guidelines for en- actment of laws in all states (NCCUSL, 1997, 1998). An example of the way state law may or may not follow the Act is terminology. The Act refers to the person who is the subject of a proposed guardianship as a respondent. However, state laws refer to the person variously as an allegedly incapaci- tated person, a proposed conservatee, or a proposed ward. Following establish- ment of the guardianship or conservatorship, the person may be called a conservatee, a ward, a protected person, and in Louisiana, an interdict. The term for the person who is appointed by the court to take legal responsi- bility for another adult’s personal and/or financial affairs is also variable. The Act defines a conservator as a person who is appointed by the court to manage the estate of a protected person. The estate includes such assets as income, real property, bank accounts, stocks, cash, and jewelry. The Act refers to a guardian as a person who is appointed by the court to manage quinn-1.qxd 10/7/2004 1:58 PM Page 5 Introduction to Guardianship 5 the personal affairs of a person such as food, clothing, medical decision- making, and living situations. Some states have adapted the terms as set out by the Act. However, others have decided to use the term conservator or guardian for the individual who manages both personal and financial affairs of an impaired adult. For the purposes of this book only, the term guardian will be used to apply to a person or agency appointed through a court process to manage the personal and/or financial affairs of an adult. Adults with disabilities who are the focus of guardianship proceedings will be referred to as persons with diminished capacity. If a guardianship was established, the term used will be person in guardianship. WHAT IS A GUARDIANSHIP? In the United States, all adults are considered capable of handling their personal and financial affairs unless a court determines otherwise. Guardianship is only one of several legal approaches available to manage the personal and financial affairs of adults who cannot manage them for themselves. Unlike the other legal approaches such as trusts and powers of attorney, which are private arrangements, guardianships involve a for- mal court process which is public although some documents may be con- fidential. Guardianships are considered to be matters for the civil justice system. The “guardianship court” may have a different name depending on the state. It could be Probate Court, County Court, District Court, Cir- cuit Court, Court of Common Pleas, Chancery Court, Surrogate Court, or Superior Court (Benton, 1998). Some states handle guardianship of estate in the Probate Division and guardianship of person in the Family Court. In order to establish a guardianship, information must be formally filed with the court in a document stating that an individual lacks the ability to handle her personal and/or financial affairs and explaining why. This document is called a petition. The petition should include ex- amples of dysfunctional or self-endangering behavior. There may be alle- gations of physical abuse, financial exploitation, or neglect by others. Usually a report by a physician is filed with the court that provides the person’s medical diagnoses. This report may be called a declaration in some states. The petition also names the person or agency that is request- ing appointment as guardian. The attorney who files the petition must, by law, formally notify close blood relatives of the filing of the petition and provide copies of the petition. Someone from the court may go out to see the allegedly impaired person and prepare a written report to the judge. In some states, the law requires that an attorney be appointed by the court to represent the person with diminished capacity in guardian- ship proceedings. In other states, the judge has the option of doing so. quinn-1.qxd 10/7/2004 1:58 PM Page 6 6 Guardianships of Adults After all the required documents and reports are filed, the judge has the opportunity to review them. If the judge decides that the adult is suffi- ciently impaired and unable to take care of herself, a guardian is ap- pointed. This appointment usually takes place at a scheduled time in a courtroom and is called a hearing. Most judges make every effort to keep sensitive information out of the public arena. However, a court hearing is a public matter and anyone can appear and state their opinions or objec- tions. If a guardian is appointed, he must periodically file certain re- quired documents with the court, such as a general plan, accountings of financial dealings, and reports of the status of the person with disabili- ties. Court personnel and the judge review these documents for proper format and content. Although guardianships can be terminated for a number of reasons, typically a guardianship continues as long as the adult with disabilities is alive. GUARDIANSHIP MODELS Courts approach guardianships as determined by the law in that particu- lar state. Traditionally, there have been three ways of thinking about guardianship (Frolik, 1981). These are: 1) “Parent-Child Model” or the “Developmental Model,” 2) “Therapeutic State Model,” and 3) “Substi- tuted Judgment Model.” Parent-Child Model The first model, the Parent-Child Model, or Developmental Model, now somewhat outdated, presumes that the purpose of a guardian is to take care of an adult with disabilities much as a parent would. The elderly adult with impairments is viewed as childlike and therefore must have help and guidance. The elder cannot protect himself or act in his best in- terests and therefore a guardian must intervene in his life. Developmen- tally disabled people also fall into this category, but more in the sense that they are seen as overgrown children who need guidance and assis- tance to reach their potential. The guardian is, in fact, a “parent” and a caregiver. The actions taken by the guardian in this model must be “so conservative and so commonplace as to be beyond reproach” (Frolik, 1981). The guardian maintains the status quo and acts in a conservative manner. Any actions taken out of the ordinary must meet the standard of best interests of the adult with disabilities as determined by a judge. In this model, the court is seen as delegating authority to private individu- als who, as guardians, will act carefully and conservatively. In this model, there is little concern about protecting the rights of the person quinn-1.qxd 10/7/2004 1:58 PM Page 7 Introduction to Guardianship 7 coming into guardianship or oversight after the guardianship is estab- lished. Guardianships are viewed as inherently beneficial. Court pro- ceedings are minimal with little formal process involved because it would cause delays and expense. The hearing for the appointment of the guardian may not even be public. Little formal notice is given to con- cerned parties; there is no need for the proposed ward to be given infor- mation about the proceeding, to come to the hearing, or to have an attor- ney to represent him. Unlike other civil court proceedings, judges are not presented with conflicting evidence between people who are opposing each other. There are no opposing parties. The role of the judge is to de- termine if the guardianship is warranted given the evidence presented by the proposed guardian and her attorney. Therapeutic Model In the Therapeutic Model, the guardian is also acting as protector with the added element of being a case manager. The clear goal in this model is for guardians to take care of those who might benefit from help as de- termined by their dysfunctional behavior or the results of “bad” deci- sion-making. Advocates of this model stress that the adult in guardian- ship should participate in decisions as much as possible. But they reserve the right to “trump” the decisions of the adult if the decisions are not “appropriate” (Frolik, 1981). In this model, the guardian secures needed services for the adult with disabilities, even if the adult does not want the services and assistance. This approach eliminates the traditional require- ment that the proposed ward lack mental capacity or suffer from an iden- tifiable disorder. Here the basic purpose of guardianship is to “protect and promote the well-being of seriously disabled persons who cannot fend for themselves in a perilous world” (Kapp, 2002, p. 1048), and to do so with the least amount of cost in both economic and psychological terms. Courts become therapeutic agencies rather than neutral referees of disputed facts and technical points of law. This is therapeutic jurispru- dence at work (Zimmerman, 1998; Kapp). While this model does allow for legal options less restrictive than guardianships, it still relies on good will and takes an optimistic, even naïve approach to the subject of guardianships. The rights of the proposed ward are not seen as a major issue. The guardian acts in the “best interests” of the person in guardian- ship. Substituted Judgment Model The third model described by Frolik (1981) is the Substituted Judgment Model. Here guardianship provides a means of making the decisions the quinn-1.qxd 10/7/2004 1:58 PM Page 8 8 Guardianships of Adults adult with disabilities would have made if only he did not have disabili- ties. Such decisions allow guardians to provide financial support for fam- ily members from the assets of the disabled person, make medical deci- sions, give gifts to individuals, or prepare estate planning documents. In some jurisdictions, state law allows guardians to obtain attorney assis- tance to prepare and sign trusts, after which the guardianship quite likely can be terminated. There are times, however, when it is not known what the individual in guardianship would have wanted. Then the court can rely on the reasonable person standard, i.e., what a reasonable person would do under the particular circumstances. The shortcomings of this model are fairly obvious. For instance, the court must rely on what some- one else says the adult with disabilities would have wanted, not what the individual has said he wants. Proponents of the Substituted Judgment model call for a more legal- istic or adversarial approach to guardianships (Frolik, 1981; Kapp, 2002). Guardianship, which after all is the involvement of public authority, is seen as appropriate only when the adult with diminished capacity clearly lacks the ability to formulate decisions and when a host of due process procedures are fulfilled. This approach “emphasizes and embraces the adversarial, due-process aspects of the legal system, in which allegations of opponents are hotly contested until the ultimate available level of review has been exhausted, and a presumption of impermissible conflicts of interest encourages a multi- plying of layers of protection” (Kapp, p. 1048). This approach is much like the adversarial proceedings now found in civil courtrooms and in civil commitment hearings. This approach has been criticized as being time consuming, causing more expense, and fos- tering alienation between family members. Over the years, elements of these three models of guardianship have been combined, used, abused, mulled over, refined, been found wanting, and then partially discarded, sometimes with disillusionment (Quinn, 1996). In reality, however, parts of each of the three models can be found in most guardianship proceedings. Succeeding chapters will address the elements that are in use as well as newly formulated standards and pro- cedures. WHO IS AFFECTED BY GUARDIANSHIPS? Guardianships deeply affect many people. Primarily, of course, they af- fect those who are the subject of a guardianship and those who serve as quinn-1.qxd 10/7/2004 1:58 PM Page 9 Introduction to Guardianship 9 their guardians. To a lesser extent, they also affect other parts of the “sys- tem,” namely judges, attorneys, families, adult protective services work- ers, friends, doctors, and community health or social services workers. Elders Most people affected by guardianship are over the age of 65. This group of Americans, especially those over 75 years of age, is the most likely group of people to lose the ability to take care of themselves and to han- dle their affairs due to physical and/or mental impairments. This is also the group of Americans who historically own their homes and have as- sets such as bank accounts, stock holdings, and income-producing prop- erty. The simple act of buying a home several decades ago greatly in- creases the possibility of wealth because of real estate appreciation. People over the age of fifty control at least 70% of the nation’s household net worth (Wasik, 2000). The median net worth of elder households in 2000 was $108,885 compared with $55,000 for the total population. The largest asset type is home ownership. Over 78% of elders own their own homes (Administration on Aging [AoA], 2001). Their assets can make them targets of unscrupulous people. If elders develop chronic condi- tions associated with aging that make them vulnerable or dependent, they may lose the ability and judgment to handle their financial affairs properly. Younger Adults with Diminished Capacity Adults between the ages of 18–64 can also be involved in guardianships, although to a lesser degree than elders. This group includes people with developmental disabilities or a debilitating mental illness, people who were disabled as the result of war injuries, people who have suffered a catastrophic illness or accident, and those who have substance abuse problems. According to the 2000 census, 2.8% of people between the ages of 25 and 64 have difficulties with Activities of Daily Living (ADLs), which include bathing, dressing, eating, toileting, and getting around the house. Four percent have problems with Instrumental Activities of Daily Living (IADLs), which include preparing meals, shopping, managing money, using the telephone, doing housework and taking medication (Administration on Aging, 2001). Perhaps the largest category of younger adults in guardianship is the group with developmental disabilities. These conditions are severe and chronic disabilities that are manifested before a person attains age 22. These disabilities, which usually continue indefinitely, result in substan- tial functional limitations in major life activities such as self-care, com- quinn-1.qxd 10/7/2004 1:58 PM Page 10 10 Guardianships of Adults munication, mobility, self-direction and learning, living independently, and economic self-sufficiency. People with these disabilities require a combination and sequence of specialized interdisciplinary treatment and services. The services are of lifelong or extended duration and are indi- vidually planned or coordinated (Administration on Developmental Dis- abilities [AoDD], 2002). Examples of these conditions are mental retarda- tion, infantile cerebral palsy, congenital anomalies including spina bifida and Down’s syndrome, psychoses with origin in childhood, and cystic fi- brosis (AoDD). Petitions for guardianship are frequently filed when people who are developmentally disabled turn 18, become legal adults, and can legally make their own decisions. Parents petition the court for guardianship in order to have continued authority to make decisions for their adult child. In other instances, petitions may be filed when the care-giving parent dies, leaving the adult with disabilities literally home alone. Typically a sibling petitions the court for guardianship in those cases. At least one state, California, has adopted a type of guardianship (limited conserva- torship) that is specific for people with developmental disabilities. People who have a chronic mental illness may also be in guardian- ship. Parents or siblings may be appointed when the person is dis- charged from a state mental hospital, or a neutral person or agency may be appointed to serve as guardian because the family is “burnt out” due to the stress of taking care of the chronically mentally ill family member. People with a chronic mental illness or those with substance abuse prob- lems may be wealthy or may be coming into an inheritance. Families or care providers may be concerned as to how the money will be used and if it will last for the lifetime of the person. In one instance, a 48-year-old man with chronic alcoholism was advised that his widowed mother had died and he was going to inherit over $500,000. He was elated and told all his friends, several of whom also had chronic alcoholism. Everyone was greatly cheered. But then, the friends began pestering him with re- quests for money “when your ship comes in.” The man began to feel harassed. He felt conflicted and was fearful that he would lose his friends if he did not ful- fill their demands. He was very relieved when a guardianship was established and he was able to tell his friends that he did not have access to his money. Guardians A wide variety of individuals and agencies serve as guardians. Individ- ual state law determines who may serve. Most state laws provide that family members have first priority. And, in fact, approximately 70% of guardians are family members (Bayles & McCartney, 1987). These quinn-1.qxd 10/7/2004 1:58 PM Page 11 Introduction to Guardianship 11 guardians may be a spouse, an adult child, a sibling, or a grandchild. When family members are unable to serve or no family is available, other individuals such as neighbors, friends, and long-time professional associ- ates such as accountants or attorneys may be appointed to serve as guardians. Most states have Public Guardian programs and, in some states, private professional guardians or agencies can be appointed. Some state laws permit volunteers to serve as guardians. Usually volun- teers are appointed for adults with disabilities who have no family and whose assets consist of public benefits. People designating themselves as private professional guardians may also be appointed to serve as guardians. These individuals, who charge court-approved fees for their work, may be attorneys, social workers, trust officers, or nurses. However, since there is not much regu- lation in the field, any adult with little or no experience in the field could be appointed. Courts have few guidelines or prohibitions to appointing individuals who call themselves private professional guardians, particu- larly when the person with diminished capacity or family members nom- inate them or petition for their appointment. The role of private professional guardian began emerging in the 1980s and was termed a “new industry” (American Bar Association [ABA], 1989). At that time, entrepreneurial professionals started petition- ing courts for appointment as guardians, usually because no one else was available to serve as guardian or because family members were inappro- priate or the family was in conflict. In some states, private professional guardians must register with each court where they hope to be appointed to serve as guardians. Usually, there are no educational or license re- quirements to serve as a private professional guardian and there is no state agency providing oversight. The exceptions are the states of Ari- zona and Washington. Public and private agencies also serve as guardians. Some state laws require that the private agencies, whether they are profit or non-profit, meet certain standards before they are eligible to be appointed to serve as a guardian. Most states have laws that allow public agencies, such as Public Guardians, to serve as guardians. These agencies may be located in the local Department of Aging or in various other governmental agen- cies. WHY STUDY GUARDIANSHIPS NOW? Guardianships have existed in one form or another for centuries. The im- petus to study them more closely is the result of the gathering of many forces over the last three decades. The most obvious forces are judicial at- quinn-1.qxd 10/7/2004 1:58 PM Page 12 12 Guardianships of Adults tention to the issue at the national level, the involvement of the American Bar Association’s Commission on Law and Aging (formerly the Commis- sion on the Legal Problems of the Elderly), the national study of guardianships by the Associated Press in 1987, the congressional hear- ings that followed the publication of the AP study, and the reform of state laws that swept the country. While the above forces are the major factors in the focus on guardian- ships, there are other developments that have contributed significantly. Less obvious is the “discovery” of elder abuse and neglect, the growing awareness of ageism, the development of multidisciplinary groups to solve complex elder abuse and neglect cases, the importation of the con- cept of the least restrictive alternative from mental health law to guardian- ship law, the articulation of the rights of people with disabilities as em- bodied in the 1990 American with Disabilities Act (Public Law 101-336), and the changing emphasis of mental health treatment from large hospi- tals to community settings. Perhaps the most dramatic force is the grow- ing numbers of people over the age of 65, and especially those over 75 be- cause that is the group most likely to be affected by guardianships. Graying of America The United States is experiencing an unprecedented growth in the num- ber of people over the age of 65. There are more older people than ever before and they are living longer. For example, a person born in 1900 could expect to live an average of 47 years, but a person born in 2000 can expect to live almost 77 years. The percentage of Americans age 65+ has more than tripled from 4.1% in 1900 to 12.4% in 2000. Amazingly, the number of people over 100 years of age increased by 35% between 1990 and 2000 (Administration on Aging [AoA], 2001). The older population itself is getting older. According to the Admin- istration on Aging, in 2000 the 65-74 age group (18.4 million) was 8 times larger than in 1900, but the 75-84 age group (12.4 million) was 16 times larger and the 85+ age group (4.2 million) was 34 times larger (Adminis- tration on Aging, 2001). The growth in the population over 65 will con- tinue to increase significantly. Between the years 2010 and 2030, the pop- ulation over 65 will double. This growth will culminate in 2030 when the “baby boomers” reach 65. At that time, there will be more than twice the number of people over 65 than in 2000. The age group 75+ will also more than double by 2030. Age, health status, and chronic conditions are related. Chronic con- ditions and disabilities requiring assistance rise with age. In 1999, 16% of people between the ages of 75-79 reported needing assistance with daily activities. Of the people over 80, over 75% reported needing assistance quinn-1.qxd 10/7/2004 1:58 PM Page 13 Introduction to Guardianship 13 with daily activities (AoA, 2001). Obviously, disabilities take the biggest toll on adults who are very old. According to anecdotal evidence, these are the Americans most likely to have a guardianship, especially when there is a dementia. The number of guardianship petitions will increase as the population over 65 grows, especially the group over 75 years of age. Civil Rights and Guardianships Before the 1960s, the civil rights of people in guardianship proceedings were not a consideration. Family members or others who offered to be guardians were viewed as always having benevolent intentions and as simply stepping forward to assist someone who needed help. The pro- posed guardian retained an attorney to file for the guardianship and the attorney never met the person with diminished capacity who was the subject of the proposed guardianship and from whose estate the attorney fees would be paid. The attorney for the intended guardian filed the ap- propriate documents with the court and appeared at the court at the time set for the case to be considered by the judge. The person who was the subject of the guardianship was usually not represented by an attorney and most likely had not been informed of his rights by anyone. In some states, the granting of a guardianship was done without a public hearing, which meant that there was no opportunity for anyone to express an opinion except the proposed guardian and his attorney. A guardianship could be imposed without the person knowing it was being done or had been done. Judges usually did not have a complete picture of the per- son’s situation because they were given very little neutral information. Until fairly recently, the only neutral information given to a judge in a guardianship proceeding was a brief statement from a physician who gave a diagnosis and often concluded that the person needed a guardian- ship. Depending on the individual state law, once a person was placed in guardianship, she was deprived of basic rights such as the right to marry, to vote, to control finances, perhaps to drive, to choose a medical provider, and to decide where to live. Once the guardianship was estab- lished, courts frequently had no further contact with the guardian or the person in guardianship. The civil rights movement of the 1960s, with its emphasis on the rights of minorities, women, and people with disabilities, brought a number of changes to guardianship. It is now generally acknowledged by those practitioners involved in guardianships that the person who is the subject of a proposed guardianship has a right to know that the peti- tion is pending and to know what her legal rights are in relation to this legal proceeding, such as the right to be present at the hearing, to object quinn-1.qxd 10/7/2004 1:58 PM Page 14 14 Guardianships of Adults to the person who is proposed as the guardian, to name someone else to be the guardian, to have an attorney, and to have the matter heard by a jury. Many states now provide for court-designated professionals to physically go to the place of residence of the person with diminished ca- pacity and to tell him what his legal rights are. The person from the court also assesses the person’s functioning as well as the circumstances. The proposed guardian is interviewed and, in complex or conflicted cases, many other people might be interviewed. Another major change in guardianship since the 1960s has been the focus in state law and the professional literature on the concept of the least restrictive alternative and the companion concept of limited or tai- lored guardianship. The least restrictive alternative means that a guardianship should not be imposed if there is a legal device that is not as complex or as public. Such alternatives or options are discussed in chapter 5 and include trusts, powers of attorney, and joint tenancy on bank accounts, real property, and other assets. In a limited or tailored guardianship, the judge does not remove all legal rights from a person with diminished capacity who is in guardianship. Rather, the judge adapts the removal of rights to the person’s situation. For example, the judge might order that a person capable of handling daily finances have a bank account that is regularly funded and exempt from court account- ings. Or, a judge might order that a person not be moved out of her home without court review. The concept of limited or tailored guardianship is further discussed in chapter 6. Rise of Elder Abuse and Neglect In 1978, domestic elder abuse and neglect came to the national conscious- ness when Dr. Suzanne Steinmetz, a domestic violence researcher, testi- fied in Congress that elder abuse existed. Other forms of domestic mis- treatment, namely child abuse and neglect, child sexual assault, woman battering, and rape had been “discovered” in the 1960s and 1970s and much was known about them. However, elder abuse and neglect re- mained hidden for many reasons, including the inability of some victims to tell anyone due to diminished capacity. Since the late 1970s, there have been other Congressional hearings, conferences, research, and textbooks. Mandatory reporting laws have been passed in most states. Six states have chosen to pass voluntary reporting laws (Choi & Mayer, 2000). These states provide for immunity against criminal or civil liability for those persons who make voluntary reports. In fact, all states provide im- munity if the report is made in good faith. According to the 1998 National Elder Abuse Incidence Study, both men and women are abused, but women are abused at a higher rate, quinn-1.qxd 10/7/2004 1:58 PM Page 15 Introduction to Guardianship 15 even accounting for their higher numbers in the aging population (65+). People over the age of 80 are abused or neglected at two to three times their proportion of the elderly population. In nearly 90% of the incidents of abuse or neglect in which there is a known perpetrator, it is a family member, usually a spouse or adult child. The study addressed the issue of incidence by reviewing reports made to Adult Protective Service agen- cies and by collecting data from “sentinels” who were people in a variety of agencies having frequent contact with the elderly. The estimated inci- dence (new cases) for the year studied (1996) of people 60 years old and over who were abused or neglected by others was nearly half a million. Of that total, 16% of the cases were reported and substantiated by Adult Protective Service agencies. This means that an astonishing 84% of the cases were not reported to Adult Protective Services. When self-neglect is added to the other types of abuse and neglect, the numbers rise markedly, with 21% of cases reported and substantiated and the remain- ing 79% not reported (AoA, 1998). Other incidence and prevalence stud- ies suggest that the prevalence rate of abuse is approximately 3-5%, or about 1 million individuals 65 years old or older, depending on the cate- gories of abuse cited (Wilber & McNeilly, 2001). Multidisciplinary Teams One of the major approaches to dealing with elder abuse and neglect has been the formation of multidisciplinary teams. The teams vary as to the professionals who are part of the them but can include social service per- sonnel, ombudsmen, public health nurses, public interest lawyers, physi- cians, hospital discharge planners, prosecutors, public guardian staff, city attorneys, police officers, and others who deal directly with victims of elder abuse and neglect and their alleged abusers. Many elders being abused or neglected are commonly being served by many agencies si- multaneously. Many communities have multidisciplinary teams that meet regularly and provide a problem-solving forum for discussing diffi- cult cases and sharing information, expertise, and resources (Nerenberg, 1995; 2000). The teams promote coordination between agencies by clari- fying each agency’s policies, procedures, and roles. They also reduce “turf battles” and finger pointing (Quinn & Heisler, 2002). They enhance the professional skills and knowledge of individual team members by providing an opportunity to learn more about the perspectives, strate- gies, resources, language, and approach used by various disciplines. The subject of guardianship is a common one in multidisciplinary team meet- ings. For the first time, professionals who work directly with elders have a forum that enables them to focus on the criteria for guardianship, the need for guardianship, the process of guardianship and often, the dearth quinn-1.qxd 10/7/2004 1:58 PM Page 16 16 Guardianships of Adults of appropriate people or agencies to serve as guardians. Practitioners are learning about powers of attorney, trusts, and other legal issues. They are also learning that in many instances, the only way to stop the abuse or neglect is to establish a guardianship. The concept of multidisciplinary teams has also been raised in the arena of guardianships as a way to sort out alternatives to guardianship, and to ensure that proper assessments are done before a guardianship petition is filed. SUMMARY Although guardianships have existed for centuries, they have not re- ceived much attention in the United States until the last three decades. The rise of civil rights for disadvantaged people, the burgeoning elder population, the emergence of elder abuse and neglect, and other factors, have led to a heightened focus on guardianships. Practitioners from vari- ous disciplines involved in guardianships are beginning to talk to each other. However, practitioners who first encounter adults and elders with disabilities in their caseloads are still faced with barriers when they be- lieve guardianship is appropriate for their client. Judges in many juris- dictions still are not receiving the information they need to make mean- ingful decisions in guardianship proceedings. In many jurisdictions, family members who serve as guardians are not receiving the informa- tion and support they need to carry out their duties. It is unclear if civil rights are being observed as a matter of practice in each and every guardianship. Some progress has been made but much more understand- ing and clarification is needed.
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