Introduction: Confronting the Culture of Guardianship · Web viewThe Guardianship Reform Project had a full-time Project Manager, whose responsibilities included conducting research

Illinois Guardianship Reform Project

Final Report

Prepared byMorris A. Fred, J.D., Ph.D.

with assistance fromE.G. Enbar, M.S.

This publication was made possible by funding from The Chicago Community Trust, the Polk Bros. Foundation, The Field Foundation of Illinois, Inc., the U.S. Department of Health and Human Services: the Administration on Developmental Disabilities, and the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration, and the Illinois Council on Developmental Disabilities. The contents of this publication are solely the responsibility of Equip for Equality and do not necessarily represent the official views of these foundations and agencies.

©Equip for EqualityFebruary 2001

EQUIP FOR EQUALITY

Pamela A. Hansen, Chairperson of the Board of DirectorsZena Naiditch, President and Chief Executive Officer

ILLINOIS REGIONAL OFFICES

Northeastern Region (Chicago)11 E. Adams, Suite 1200, Chicago, Illinois 60603312.341.0022 800.537.2632 Fax 312.341.0295TTY 800.610.2779 Se habla Español

Northwestern Region (Rock Island)1612 Second Ave., P.O. Box 3753, Rock Island, IL 61204309.786.6868 800.758.6869 (Voice/TTY) Fax 309.786.2393

Central/Southern Region (Springfield)427 E. Monroe, P.O. Box 276, Springfield, Illinois 62705217.544.0464 800.758.0464 (Voice/TTY) Fax 217.523.0720

Please contact Equip for Equality for permission to reproduce this publication or

for information regarding other publications.

ii

Table of Contents

Executive Summary

................................................................................................................................................

1

Chapter I Introduction: The Illinois Guardianship Reform Project

6

Chapter II Assessment: Ensuring an Appropriate Determination of the Need for

Guardianship

........................................................................................................................

16

Task Force Findings

25

Task Force Recommendations on Assessment

26

Chapter III Monitoring: Enduring Guardianship Accountability

27

Task Force Findings

35

Task Force Recommendations

36

Chapter IV Training and Support: Ensuring the Success of Guardians

38

Task Force Findings

42


43

Chapter V Public and Private Guardianship Service Programs: Ensuring a Sufficiency of Guardians

44

Task Force Findings

51

iii


52

Chapter VI Public Education and Professional Training: Ensuring the Success of Guardianship Reform

53

Task Force Findings

55


56

Appendix A Petition for Appointment of Guardian

57

Appendix B Medical Report

59

Appendix C Court Investigator Report

63

Appendix D Initial Guardianship Plan

68

Appendix E Annual Report of Guardian on Condition of Ward

70

Appendix F Court Monitor Report Form

73

Appendix G Proposed Statutory Revisions

79

Appendix H Report on Focus Groups of the Illinois Guardianship Project

88

Appendix I Guardianship Reform Project Public Hearings and Testimony Report

124

Appendix J Guardianship: An Overview of Key Issues

142

Appendix K Biographies of Senior Review Board, Task Force, Staff

145

iv

Illinois Guardianship Reform Project

Final Report

Publication funded by The Chicago Community Trust, Polk Bros. Foundation, Inc., The Field Foundation of Illinois, Inc., the U.S. Department of Health and Human Services, and the Illinois Council on Developmental Disabilities.

Public Policy Program

v

Acknowledgments

To complete a task as complex as the Guardianship Reform Project requires the support and dedication of many individuals and organizations. Equip for Equality would like to acknowledge the particular support of the following, without whom the project could not have succeeded:

The Chicago Community Trust, Polk Bros. Foundation, Inc., and The Field Foundation of Illinois, Inc. for providing the grants that made the Guardianship Reform Project a reality. Supplementing these grants were protection and advocacy funds from the United States Department of Health and Human Services, the Administration on Developmental Disabilities and the Center for Mental health Services, Substance Abuse and Mental Health Services Administration.

Chief Justice Charles E. Freeman of the Illinois Supreme Court and Erica Wood of the American Bar Association for inaugurating the project and energizing all involved to begin work to improve the guardianship system for future generations.

Professor Mark Heyrman, whose energetic oversight and chairmanship of the Task Force and Senior Review Board enabled the project to achieve its goals.

Members of the Task Force and Senior Review Board, who donated their time to tackle the many complex issues entailed in guardianship reform and who produced a comprehensive set of recommendations for implementation.

Many experts and practitioners throughout the United States who willingly and repeatedly provided information about their experiences with and research on guardianship. Particular appreciation goes to Penny Hommel of the Center for Social Gerontology in Ann Arbor, Michigan; Sally Balch Hurme of AARP; and Erica Wood of the Commission on Legal Problems of the Elderly, American Bar Association.

The many individuals, organizations, and advocacy groups who participated in the Focus Groups and Public Hearings.

Illinois Council for Developmental Disabilities for supporting the initial phase of implementing the Guardianship Reform Project Task Force recommendations.

vi

The Illinois Guardianship Reform Project

Executive Summary

Introduction

A significant number of individuals in Illinois, primarily the elderly and persons with disabilities, are affected by guardianship, the judicial process whereby a court determines that an adult no longer has the capacity to make personal decisions for himself or herself and such power is transferred to a guardian. In 1999, approximately 1500 new adult guardianship petitions were filed in Cook County alone; though similar statistics are not tracked on either a state or national level, this figure is an indicator of the vast number of individuals currently within the guardianship system.

Guardianship has many aspects which, when it is undertaken carefully, make it an ideal mechanism for protecting the rights of persons with decisional impairments. Well-trained and dedicated guardians can be vigorous advocates for the wards for whom they are responsible. They can protect them from financial exploitation, obtain services for them, and ensure that healthcare decisions are made in a timely and responsible fashion. In an ideal guardianship system, not only are there skilled guardians available for persons with decisional impairments, but the court also has the time and resources to supervise the guardian to ensure proper decision-making and the protection of the ward’s interest.

In Illinois we have many skilled and dedicated guardians as well as vigilant and resourceful judges. Unfortunately, the guardianship systems in many states, including Illinois, do not always accomplish the difficult task set for them, often due to a lack of funding and other resources. As will be discussed in detail in this report, not all guardians are well trained and many are overworked. Additionally, not all of the courts in Illinois have the resources to ensure that each of the guardians they have appointed is functioning effectively. Nor are the courts always provided with sufficient information to ensure that a guardian is actually needed.

In the last 20 years, the importance of guardianship has led to a proliferation of reports and studies that seek to develop the best system to care for individuals in need, while protecting their rights of self-determination. Among the most comprehensive studies were those of the American Bar Association and the Center for Social Gerontology (Ann Arbor, Michigan), both of which documented substantial deficiencies in state guardianship systems. Common problems cited in these and other reports include

inadequate assessments for determining decision-making capacity, which may result in the unnecessary appointment of guardians or in guardianships that are too broad in scope;

inadequate due process protections in guardianship proceedings (e.g. proper notice of hearings to determine whether an individual is in need of a guardian) to protect individuals from potentially serious restrictions of their constitutionally protected freedoms;

inadequate training of individuals serving as guardians so that they know what is expected of them and where to receive assistance;

vii

inadequate review of guardian reports and monitoring of guardians in the performance of their duties to ensure that no abuse or neglect is taking place; and

little or no public awareness of the alternatives to guardianship.

In light of these studies and with the support of individuals and organizations in Illinois with expertise and experience in guardianship, Equip for Equality established the Guardianship Reform Project. Its purpose was to identify state problems and develop a model reform plan for the adult guardianship system in Illinois, focusing upon guardianship of the person (as opposed to guardianship of the estate, which solely addresses financial issues). With the support of three foundations, The Chicago Community Trust, the Polk Bros. Foundation, Inc., and The Field Foundation of Illinois, Inc., and supplemented by protection and advocacy funds from the United States Department of Health and Human Services, the project was formally launched on June 30,1999, with keynote speeches by then-Chief Justice Charles E. Freeman of the Illinois Supreme Court and Erica Wood of the American Bar Association’s Commission on Legal Problems of the Elderly.

Task Force and Senior Review Board

The Guardianship Reform Project had a full-time Project Manager, whose responsibilities included conducting research and preparing materials for consideration by the decision-making body for the project, an interdisciplinary Task Force comprising 17 members who are experts and leaders in the fields of gerontology, mental and physical disabilities, law and behavioral health. The Task Force met monthly for more than a year and was responsible for identifying problem areas in guardianship in Illinois, reviewing alternative solutions, and ultimately reaching consensus on findings and recommendations to improve the adult guardianship system in Illinois. A second key committee that met less frequently, the Senior Review Board, consisted of 15 state legislators and judges. Although not responsible for approval of the Task Force recommendations, the Senior Review Board’s function was to review the progress of the Task Force and provide commentary, from a judicial and legislative perspective, as to the feasibility and desirability of implementing those recommendations.

The format used for the Task Force and Senior Review Board was as follows. The members of the Task Force would review the results of the Project Manager’s research and discussion with experts across the country regarding the specific issue under consideration. After much discussion, the Task Force members agreed upon proposed Findings and Recommendations on that particular subject. These draft Findings and Recommendations were then reviewed by the Senior Review Board. The Board, whose meetings were chaired by the Task Force chairman, made comments and offered its advice regarding the feasibility and desirability of changing the system as recommended by the Task Force. Based on the feedback from the Senior Review Board, the Task Force would then revisit the issue area and make whatever changes the group believed were appropriate.

viii

Focus Groups and Public Hearings

At the same time that the Task Force began its work, the Guardianship Reform Project began conducting focus groups as part of the process of obtaining the viewpoints of the elderly and people with disabilities, family members, service providers and others who have experience with the guardianship process. Six focus groups were conducted in Springfield and Chicago (three in each) by an independent market research firm. After all the focus groups were completed, the market research firm prepared a report summarizing the results. Copies of the report were distributed to all members of the Task Force and Senior Review Board.

To further provide an opportunity for members of the general public to comment upon guardianship issues, the Guardianship Reform Project held three public hearings, one each in Springfield, Carbondale and Chicago. Approximately 150 people attended the hearings, with 46 people testifying, while another 12 submitted written statements. The public hearings were videotaped, and a summary of all the testimony was provided to the Task Force and Senior Review Board for their consideration.

Recommendations

The enclosed report of the Guardianship Reform Project includes the recommendations of the Task Force, which are highlighted below:

I. Assessment: Ensuring an Appropriate Determination of the Need for Guardianship. Appointing guardians only in those cases in which individuals cannot make or communicate decisions for themselves and ensuring that guardianships, when ordered, are individualized and limited to the extent required by the individual’s needs.

Recommendations include

expanding the investigative role of the guardian ad litem, who is appointed as the “eyes and ears of the court” to report on the advisability of guardianship; and

promoting voluntary use of model medical and guardian ad litem report forms to provide the courts with sufficient information to make informed decisions about the need for and scope of the guardianship.

II. Monitoring: Ensuring Guardianship Accountability. Enhancing the courts’ resources for monitoring guardianships to ensure that individuals under guardianship are receiving the guardianship services they require, that no abuse or neglect is taking place, and that the guardianship order continues to be appropriate over time.

ix


conducting a demonstration project to assess the merits of establishing a statewide monitoring system;

mandating submission to the court of an initial guardianship plan to be submitted by all newly appointed guardians;

promoting the use of a standardized annual guardian report form; and

establishing a statewide guardianship registry to provide more efficient oversight.

III. Training and Support: Ensuring the Success of Guardians. Providing guardians with ongoing support and training to enhance their ability to perform their duties more effectively.


encouraging all newly appointed guardians to take a training and orientation course;

developing a manual for distribution to all guardians; and providing the Office of State Guardian with additional funding

for expanding, improving, and publicizing its statewide information service that provides information about guardian responsibilities and available community resources.

IV. Public and Private Guardianship Service Programs: Ensuring a Sufficiency of Guardians. Providing the public guardianship system with sufficient resources to guarantee its proper functioning and creating a mechanism for regulating private agencies that offer guardianship services.


securing funds for the Office of State Guardian, to hire additional caseworkers and other support staff;

modeled after an initiative of the Cook County Public Guardian, supporting efforts of other county Offices of Public Guardian in the state to expose and resolve financial exploitation cases and incidents where individuals with disabilities are victims of abuse or neglect; and

establishing a certification program for professional guardians in Illinois.

V. Public Education and Professional Training: Ensuring the Success of Guardianship Reform. Developing effective and efficient mechanisms to train professionals involved in the guardianship process and to disseminate information about guardianship and alternatives to guardianship to seniors and

x

people with disabilities and their families, legal, healthcare and social service professionals, and the general public.


developing model guardianship curricula for continuing education in conjunction with professional associations throughout the state for use with different audiences;

publicizing and expanding the Office of State Guardian’s telephone service and website; and

encouraging the public schools to provide information about guardianship and alternatives to guardianship to interested students and their parents.

A complete set of the Task Force’s findings and recommendations may be found in this final report of the Guardianship Report Project, which is also available on Equip for Equality’s website: www.equipforequality.org. The report presents 1) a research-based commentary that begins each chapter and provides background on the particular issue discussed by the Task Force, 2) the Findings and Recommendations of the Task Force, 3) appendices of statutory revisions and model report forms developed by the Task Force, and 4) summaries of focus groups and public hearings. Finally, it should be noted that the Task Force has agreed to meet periodically to support implementation of key recommendations.

xi

Chapter 1:Introduction: The Illinois Guardianship Reform Project

[T]he issues surrounding guardianship in Illinois, and around the country, require a timely and effective response. The Guardianship Reform Project will be highly instrumental

in shaping that response.

With these words, Chief Justice Charles E. Freeman of the Illinois Supreme Court, together with Erica Wood of the American Bar Association’s Commission on Legal Problems of the Elderly, and representatives from the three foundations supporting the project, The Chicago Community Trust, the Polk Bros. Foundation, Inc., and The Field Foundation of Illinois, Inc.1 formally inaugurated the Guardianship Reform Project (GRP) in June 1999. The groundwork had been laid for the project by Equip for Equality, a not-for-profit organization designated by the Governor of Illinois to administer the Federal Protection and Advocacy System. Equip for Equality had taken the initiative to design and find support for a process that would examine and assess the need for change in the Illinois adult guardianship system pertaining to guardianship of the person, the judicial process whereby a court determines that an adult no longer has the capacity to make personal decisions for himself or herself and transfers such power to a guardian. The project’s exclusive focus was on guardianship of the person (rather than of the estate).

The following is the final report of the Guardianship Reform Project, including the Findings and Recommendations of a Task Force of experts that met for more than a year to undertake a comprehensive examination of guardianship of the person in Illinois and to develop recommendations for legislative and other programmatic measures to improve that system. The report itself is comprised of 1) a research-based commentary that begins each chapter and provides background on the particular issue discussed by the Task Force, 2) the Findings and Recommendations that were agreed to by the Task Force, 3) appendices of statutory revisions and model report forms developed by the Task Force, and 4) summaries of focus groups and public hearings that were held to provide public input to the Task Force’s decision-making process.

It is noteworthy to point out that the report discusses problems that are being confronted throughout the country. In issuing its Findings and Recommendations, the Task Force seeks to make clear that nothing in the report should be construed as a criticism of any particular individual or agency. Rather, the Task Force focused on the guardianship system as a whole, which, often due to inadequate funding and other resources, does not always accomplish the difficult task of protecting individuals who are unable to make or communicate important decisions about their lives, while preserving individual autonomy to the greatest possible extent.

1 The Project has also been supplemented by protection and advocacy funds from the United States Department of Health and Human Services.

xii

BackgroundDemographic trends indicate a continuing rise in thenumber of vulnerable people who are most likely toneed and benefit from guardianship and other less intrusive surrogate decision-making alternatives.0

A significant number of individuals in Illinois, primarily the elderly and persons with disabilities, are affected by guardianship. In 1999, in Cook County, approximately 1500 new adult guardianship petitions were filed; though similar statistics are not tracked on either a state or national level, this figure is an indicator of the vast number of individuals currently within the guardianship system.0

Most people with disabilities lead highly productive independent lives. However, a small subset of individuals are unable, due to mental and physical conditions, to make and communicate decisions about important aspects of their lives. The number of such individuals will certainly increase as the elderly population expands rapidly in the next several decades. By 2035, one quarter of the population of the United States will be elderly. In addition, the number of non elderly individuals with disabilities (e.g. mental illness, developmental disabilities, AIDS) will continue to increase due to improved survival rates of infants born with disabilities and increases in life expectancy. Some of these individuals will require surrogate decision-makers, and the appropriate mechanisms must be in place to ensure that decisions may be made for this growing population. Thus, guardianship will remain a serious issue confronting individuals, family members, government agencies, and the judicial system well into the 21st century.

Guardianship has many aspects that, when it is undertaken carefully, make it an ideal mechanism for protecting the rights of persons with decisional impairments. Well-trained and dedicated guardians can be vigorous advocates for those for whom they are responsible. They can protect them from financial exploitation, obtain services for them and guarantee that healthcare decisions are made in a timely and responsible fashion. In an ideal guardianship system, not only are there skilled guardians available for persons with decisional impairments, but the court also has the time and resources to supervise the guardian to ensure proper decision-making and the protection of the wards interests.

While there is a generally recognized need for guardianship to protect some individuals from personal harm and economic exploitation, serious problems have been found in state guardianship systems. In the late 1980s, the Associated Press published a series of stories documenting serious and pervasive problems with guardianship throughout the nation. The AP series, which involved 57 reporters who reviewed 220 probate court files from every state, revealed problems of abuse, neglect, and mismanagement that were reinforced by findings of public hearings conducted by the U.S. House Committee on Aging,0 as well as by a report of the Subcommittee on Housing and Consumer Interests recommending standards to ensure quality

0 ABA COMM’N ON LEGAL PROBLEMS OF THE ELDERLY, GUARDIANSHIP: AN AGENDA FOR REFORM, iii (1989).0 At present, the Office of State Guardian alone carries a caseload of about 6000 wards.0 Guardians of the Elderly and Infirm: A National Disgrace, Select Committee on Aging, 100th Cong. (1987).

xiii

guardianship.0 Through the newspaper series and Congressional hearings that followed, it was learned that some of the more common deficiencies in state guardianship systems included 1) a lack of due process protections; 2) an unclear standard to determine decisional incapacity, which results in persons either being placed unnecessarily under guardianship or, when needed, being placed under a guardianship whose scope has been inappropriately defined; 3) little or no training or preparation for guardians before assuming their roles; 4) a lack of resources and systems to adequately monitor the performance of guardians; and 5) little or no public awareness of the alternatives to guardianship.0

Confronting these issues in a methodical fashion, the American Bar Association sponsored the Wingspread National Guardianship Symposium, comprising 38 guardianship experts from across the country in July 1988. With the goal of producing a set of recommendations for guardianship reform, these experts included judges, attorneys, guardianship service providers, doctors, representatives of senior organizations, mental health experts, governmental officials, a bioethicist, a state court administrator, a judicial educator, an anthropologist, and American Bar Association staff members. The resulting publication, which provided a summary of the key problems facing guardianship systems throughout the United States, is striking in its similarity to other studies published by researchers and professional associations.0 This set of recommendations provided a blueprint to guide statutory revisions in many states and can be reviewed in the American Bar Association’s annual summaries of these reform efforts.0

In Illinois, research conducted in Cook County during the 1980s raised serious concerns about the guardianship process. Madelyn Iris, of the Buehler Center on Aging at Northwestern University, found that despite the statutory reform creating limited guardianship, probate judges continued to routinely appoint plenary (or full) guardians.0 Moreover, further impetus for the Illinois Guardianship Reform project emerged from the 0 SURROGATE DECISIONMAKING FOR ADULTS: MODEL STANDARDS TO ENSURE QUALITY GUARDIANSHIP AND REPRESENTATIVE PAYEESHIP SERVICES, H.R. REP. 100-705 (1988) (report authored by Penelope A. Hommel & Lauren Barritt Lisi). 0 For an excellent review of these and other issues and problems surrounding guardianship by experts and practitioners alike, see ROUNDTABLE DISCUSSION ON GUARDIANSHIP: WORKSHOP BEFORE THE U.S. SENATE SPECIAL COMMITTEE ON AGING, S. DOC. NO. 101-22 (1992). For an historical overview of guardianship practices, see A. Frank Johns and Vicki Bowers. Guardianship Folly: The Misgovernment of Parens Patriae and the Forecast of its Crumbling Linkage to Unprotected Older Americans in the Twenty-First Century—A March of Folly? Or Just a Mask of Virtual Reality? 27 STETSON L. REV. 1 (1997).0Other influential publications encouraging reform developments throughout the country were: STATEMENT OF JUDICIAL PRACTICES (Erica Wood, ed., 1986); COMM. ON NAT’L PROBATE COURT STANDARDS, NATIONAL PROBATE COURT STANDARDS (1993); UNIF. PROBATE CODE §§ 5-101 to 505 (amended 1998), 8 U.L.A. 321 (1968); NAT’L CONFERENCE OF COMM’NS ON UNIF. STATE LAWS. UNIF. GUARDIANSHIP & PROTECTIVE PROCEEDINGS ACT ¶ 101-503 (amended 1998), 8 U.L.A. 439 (1968). While these and other works involving recommendations may differ in detail, they are strikingly similar in terms of recognition of problem areas, many if not most of which were also cited by the Task Force of the Illinois Guardianship Reform Project. 0 The ABA prepares an annual report which presents an overview of each state’s guardianship legislation during the year. See ERICA WOOD, STATE GUARDIANSHIP LEGISLATION: DIRECTIONS OF REFORM (1988-1999).0 MADELYN IRIS, THE USE OF LIMITED GUARDIANSHIP AS THE LEAST RESTRICTIVE ALTERNATIVES FOR THE IMPAIRED ELDERLY: AN ETHNOGRAPHIC EXAMINATION OF THE PROBATE COURT AND DECISION MAKING PROCESS (1986).

xiv

experiences of Equip for Equality. Over the years, Equip for Equality has represented hundreds of individuals in proceedings throughout the state, including many who were subjected to abuse or exploitation over long periods of time without the knowledge and intervention of the court because systems were not in place to monitor guardianships once appointed. Furthermore, Equip for Equality was aware of many situations in which petitions were processed without the appointment of a guardian ad litem to advise individuals of their rights and in which individuals were not present to provide evidence of their need for a guardian. Finally, there were a significant number of cases brought to the attention of Equip for Equality in which, because the changes in conditions had not been brought to the court’s attention, individuals remained under guardianship despite the fact that it was no longer necessary. These experiences and those of other advocacy organizations involved in guardianship suggested to Equip for Equality that the time was ripe to confront the present situation in order to prepare for the future.0

The Design of the Illinois Guardianship Reform Project

Illinois has many skilled and dedicated guardians as well as vigilant and resourceful judges. Unfortunately, often due to a lack of funding and other resources, the guardianship systems in many states, including Illinois, do not always accomplish the difficult tasks set for them. The design of the Guardianship Reform Project was meant to take advantage of a wide range of expertise in Illinois and from that to build a consensus for recommending improvements in the guardianship system. The framework chosen to make recommendations for the implementation of reforms has rested on the work of a Task Force, chaired by Professor Mark J. Heyrman of the University of Chicago’s Mandel Legal Aid Clinic, and supported by a Project Manager and assistant. This Task Force, which met monthly from May 1999 to June 2000, is composed of 17 experts in the fields of law, ethics, gerontology, and disability, whose cumulative professional experience with guardianship matters was critical in overcoming the dearth of existing quantitative data on guardianship issues in Illinois. Its responsibility has been to identify problem areas in guardianship, to review alternative solutions, and ultimately to reach consensus on a model adult guardianship system in Illinois. The original proposal for the project also included a cost analysis of the Task Force recommendations. Initial costing out of several of the proposals revealed, however, that the Task Force’s determination to delineate primarily broad systemic recommendations would make it preferable to postpone in-depth cost analysis until implementation of these recommendations.

0 The search for useful statewide statistical data on guardianship has been a continuous while somewhat fruitless quest, pointing to the need for a statewide guardianship registry represented in a Task Force recommendation (see infra p. 37 & no. 5). U.S. Census Bureau presents data that about 22.7% of Illinois population have some form of disability and 11.6% have a severe disability. See CENSUS DISABILITY DATA—ILLINOIS, tbl.3 at www.census.gov/cgi-bin/hhes/disapick.pl Statistics from the Office of State Guardian revealed that at the end of 1999, OSG was serving approximately 5,638 personal wards, 325 estate wards, and 66 representative payee wards with pending cases of 1,490 (personal communication on file). Of these, 1,340 were mentally ill, 3,112 were developmentally disabled, 696 had a dual diagnosis, 806 had an age-related disability, and 84 had physical disabilities. This number of course represents only those individuals who come under the protection of the Office of State Guardian and do not include those who are wards of county public guardians or those for whom a family member or professional serves as guardian.

xv

In addition to the Task Force, a Senior Review Board, consisting of 15 state legislators and judges, convened every several months. Although not responsible for approving the final recommendations of the Task Force, the Senior Review Board’s function was to comment on the feasibility and desirability of key recommendations of the Task Force, from both a judicial and legislative perspective. Together, these two committees, composed of a wide range of professional and geographic perspectives, were viewed as key to ensuring that the final recommendations would be viable and adaptable to the differing conditions in urban and rural Illinois. Moreover, this range of experiences was critical if the GRP was to meet its goal to create a statewide system with various local options, each of which could meet basic standards for guardianship. Despite unanticipated delays caused by complications in arriving at flexible solutions to complex problems, the inclusiveness was seen as an important factor in creating a unity of purpose for the project’s implementation phase. Thus, although it was a struggle to reach consensus within the Task Force of experts with different opinions, the deliberations required to do so were crucial in ensuring that the final recommendations represent a balance of the need to protect and the right to self-determination.

The Process

The Project Manager began preliminary work for the Guardianship Reform Project with a review of the literature on guardianship and discussions with experts throughout the country who had already been involved with reform efforts following the Associated Press series.0 Here, the most common refrain was that “things have changed, but still remain the same.” Thus, while most could agree that many of the most serious abuses had been addressed through statutory revisions, those revisions have failed to produce the desired outcomes in terms of number, scope, and monitoring of guardianships. This warning signal about the gap between recommendations and implementation influenced the GRP Task Force approach, which would focus on studying the relationship among various components of the guardianship system as a whole and thus identify the inconsistencies between the goals of the system and what is being done to achieve them.0

Working from a composite of their own experience and with support from the preliminary research, the Task Force initially agreed on a broad range of issues to tackle during its year-long tenure (see Appendix J). While recognizing that not all of these

0 One recent comprehensive effort at guardianship reform is that of Virginia, whose project design included many features similar to that of the Illinois Guardianship Reform Project. In 1989, the Virginia legislature submitted a comprehensive report revealing problems and recommending changes in its guardianship system similar to those identified by the GRP Task Force. See S. Doc. No. 29 (1989)( Report of the Joint Subcomm. Studying Legal Guardianship). Subsequent statutory revisions included redefinition of keys terms such as that of “incapacitated person;” specification of contents of incapacity assessment report; clear delineation of roles, powers and duties of guardians and guardians ad litem; greater specificity of information in petitions; imposition of annual reporting duties on guardians; education and training for guardians and guardians ad litem; focus on oversight of wards following adjudication; use of uniform assessment methods to determine incapacity; use of “model”court orders. For a description of the Virginia guardianship reform process, see Donaldson, Reform of Adult Guardianship Law, 32 U. RICH. L. REV. 1273 (1998). 0 For an example of systems analysis as it pertains to law, see Lynn LoPucki, The Systems Approach to Law, 82 CORNELL L. REV. 479 (1997).

xvi

issues could be covered in the limited time frame, the Task Force’s outlining of the key issues provided it with a comprehensive portrait of the key elements of the guardianship system and a foundation for its practical approach to reform.

The format used was first to have members of the Task Force discuss the findings and recommendations that were presented to them by the Project Manager, based on his research on identified issues. Once the Task Force had deliberated and agreed upon findings and recommendations for the particular issue (often after several revisions), the draft proposal was presented to the Senior Review Board for feedback. The Senior Review Board, in turn, made comments and offered its advice regarding the feasibility and desirability of key recommendations. The Task Force Chair, who also presided over the meetings of the Senior Review Board in order to ensure the efficient channeling of information between the two committees, would then resubmit the revised findings and recommendations to the Task Force, based on problems raised by the Senior Review Board. Finally, the resulting document would represent a consensus of the Task Force taking into consideration the diverse perspectives of it members.

A representative example of this process can be seen in the approach taken to examining the need for monitoring of guardianships once they have been ordered by the courts (see Chapter 3). Here, the Project Manager examined published research and spoke with practitioners and experts from Illinois and throughout the country in order to arrive at Findings and Recommendations to present to the Task Force for discussion. Because the research indicated that Illinois and most other states lacked an effective system for monitoring the work of guardians, the initial recommendations for ensuring guardianship accountability included, among other items, the creation of a statewide computerized monitoring system that would take the burden off individual courts. Discussion in both the Task Force and Senior Review Board led to an accord: Rather than mandate a statewide system, there was a need to first assess what kind of system would be most cost-effective and efficient in guaranteeing protection to wards. Thus, the Task Force arrived at the solution to recommend a pilot project to consider both the necessity for monitoring in Illinois and the model best suited for adaptation in different counties.

While the collective knowledge of members of the Task Force and Senior Review provided a strong foundation to consider most aspects of the guardianship system, it was planned from the outset that other experiences and viewpoints were to be included in the process. To expand the forum to include the perspectives of the elderly and people with disabilities, their families, and professionals engaged with the guardianship system, six independently conducted focus groups and three public hearings were held around the state. After these focus groups were held, the market research firm that conducted them prepared a report summarizing the results, which was then distributed to all members of the Task Force and Senior Review Board for consideration (see Appendix I). Additional public input came during three public hearings, held in Chicago, Carbondale and Springfield. These hearings were attended by approximately 150 individuals, with about 46 testifying orally and 12 submitting written statements to members of the Task Force and Senior Review Board (see Appendix I for summary of Public Hearings).0

0 Although not all members of the Task Force and Senior Review Board were able to be present for one or more of the hearings, a video of each hearing was made available. Similar concerns to those in the Illinois hearings and focus groups can be found in a 1993 report of the Virginia Guardianship Task Force, which held ten regional town meetings throughout the state. See VIRGINIA VOICES ON GUARDIANSHIP AND ALTERNATIVES: REPORT ON THE TOWN MEETINGS OF THE

xvii

To encourage involvement in the inaugural event, focus groups and public hearings, an integrated publicity campaign was developed by Equip for Equality’s Public

xviii

Information Director.0 The commitment to this campaign underscores the strongly held belief that a key to changing the guardianship system lies in developing public awareness and consciousness about cultural attitudes toward aging and disability, and about how these attitudes affect the increasingly significant role of guardianship in American society. Because technological advances enable individuals with disabilities to live independently in ways not considered possible 30 years ago, it is necessary to keep everyone apprised of these possibilities that have important implications for the guardianship system. It is therefore not surprising that the Task Force chose to recommend a public awareness campaign as part of the Guardianship Reform Project’s next implementation phase (see Chapter 6: Public Education and Professional Training: Ensuring the Success of Guardianship Reform, Recommendation 1).

The Distinctiveness of the Illinois Guardianship Reform Project

xix

One can see the many recommendations resulting from reform efforts across the

xx

country (and the world, as reflected in comparable projects in Europe and Canada)0 as variations on similar themes. Likewise, the Illinois Guardianship Reform Project’s distinctiveness is unlikely to be found in the substance of the final recommendations, but rather in the holistic and inclusive approach to problem-solving taken from the outset. In order to arrive at a complete picture of the guardianship system, the project was designed

xxi

to engage disparate perspectives on guardianship, many of which could be placed on a

xxii

continuum between the two values of protection and self-determination.0 The systems approach of the Illinois Guardianship Project was useful in several

ways. First, the fact that not every item on the original list of issues could be covered by Task Force recommendations became less problematic when it was recognized that each of the areas chosen for consideration were interconnected and had the capacity to create a lasting and far-reaching imprint on the guardianship system as a whole. In fact, the choice of which issue to consider was influenced by its capacity to have an impact on the greatest number of systemic problems, e.g. monitoring of guardianships.

A second constructive application of the systems approach was the emphasis placed on developing standardized report forms for use by the courts throughout the guardianship process. This approach evolved out of the realization that there is a gap between statutory revisions and actual policy implementation. Because statutory changes

xxiii

often do not lead to their intended results,0 it was deemed unwise to focus mainly on reforming the Illinois statute which, while requiring revision, is considered to be relatively good by those who have an expert overview of state guardianship statutes. Hence, detailed discussion over the development of standard forms provided the Task Force with opportunities to analyze and devise means to guide those involved in the guardianship system. Moreover, debate over tangible construction of the forms allowed the Task Force to overcome any tendency to drift towards abstract theory by putting the spotlight on concrete methods for guiding the practice of guardianship.

Rather than mandating their use throughout the state, the Task Force considered the standardized forms as drafts to be field-tested and made available as models for voluntary use by the courts. Such pragmatism was manifested in other recommendations that focused on the key principles for directing pilot projects to test the efficacy of programs in jurisdictions with significant differences in size and economic resources. The pilots--such as those recommended for monitoring--had the added advantage of allowing the committee to express principal areas of accord on the need for change without resolving disagreements about every detail.

Finally, if one were to highlight a critical challenge encountered by the project, it would be the lack of evaluation or outcomes from other states that have embarked on reforms in the past two decades. This deficiency has contributed to the difficulty in

xxiv

efficiently transferring relevant solutions to similar problems among the states.0 Hence, to allow others to build on the experiences of the Illinois Guardianship Project, the Task Force has consistently promoted the inclusion of evaluations during the project’s implementation phase.

Conclusion

The Illinois Guardianship Reform Project’s approach to defining its goals has been a dual one that recognized short-term objectives and the need for long-term systemic change. First, the focus was to provide courts with increased support and improved information in medical, guardian ad litem, and monitor reports so that guardianship is ordered only after consideration of less restrictive alternatives and maintained only to the extent required; second, to enhance the resources available in the community to support guardians and their wards; and finally, to revise those provisions of the Illinois Guardianship Statute (755 ILCS 5/11a) related to the various programmatic changes that have been recommended.

The projected aging of the population that will be served by the guardianship system, generated in part by technological advancement, makes it necessary to create an ongoing process for responding to new circumstances. Recognizing this need, the Guardianship Reform Project has chosen to seek ways to generate discussion about the implications of new research on aging and disability, both among professionals and within the general public. Here, education efforts about guardianship and its alternatives must reach the general public through effective use of the media. It is only then that American society will find an effective way to strike the proper balance between the values of self-determination and the requirement to protect people from harm.

Postscript

Although the entire work of the Task Force was anticipated to be completed within approximately one year, because of the pilots recommended by the committee, it was agreed that retaining the Task Force would be useful in order to adjust the recommendations in this report with subsequent data gathered during implementation. Moreover, the testing of model programs will include cost/benefit analyses to inform the legislature and other institutions responsible for financing improvements in the guardianship system about the fiscal impact of each reform.

Finally, the Task Force has struggled with a fundamental problem inherent in those reform efforts directed toward encouraging the use of alternatives so that guardianships will be used only when necessary to meet the needs of individuals with disabilities. During the meetings, as recommendations to promote various advance directives (e.g. powers of attorney) were proposed, they were often met with calls for restraint, since many of the identified alternatives were viewed as fraught with serious

xxv

flaws.0 At its final meeting, the Task Force agreed on the need to look closely at the issue of advance directives as well as any other issue that might come forward during the implementation process and stated its intention in the following recommendation:

While the Task Force has considered the prospect forencouraging public use of the Illinois Power of AttorneyAct, the Health Care Surrogate Act, the Mental HealthTreatment Preference Declaration Act, and others as alternatives to guardianship, the complexity of eachalternative has prevented the committee from reaching aconsensus during the first phase of the Guardianship ReformProject. Nonetheless, because of the significant relationshipof these statutes to many core guardianship issues, the Task

Force recommends that alternative measures to guardianship

xxvi

be examined during the project’s second phase.0

xxvii

Chapter 2: Assessment: Ensuring an Appropriate Determination of the Need

for Guardianship

Commentary

When I have a guardian, everybody thinks that I don’t know how to do stuff just because I have a guardian. And people get all paranoid and worried about me, but I really know how to handle things myself…0

VIRGINIA GUARDIANSHIP TASK FORCE (Sept. 1993).0 Examples of media coverage included 1) feature article on the project in Chicago’s legal newspaper. Elizabeth Neff, Disabilities Advocacy Group Out For Guardianship Reform, CHICAGO DAILY L. BULL. July 2, 1999; 2) a twenty-minute live business program featuring the GRP Project Manager and President of Equip for Equality on two Chicago business cable television stations with approximately 13,000 viewers. WCIU-TV Ch. 26 and WFBT Ch. 23, July 23, 1999; 3) interviews conducted on local radio stations, as well as posters, press releases distributed statewide prior to public hearings and articles about the GRP written in several issues of Equip for Equality’s newsletter EQUALIZER, which is sent to more than 13,000 individuals and organizations in and outside of Illinois. 0 For Canadian and European perspectives on these issues, see Office of the Public Guardian and Trustee, Ontario Ministry of the Attorney General, GUIDELINES FOR CONDUCTING ASSESSMENTS OF CAPACITY (1996); Special Issue: Competency, 20 INT’L J. L. & PSYCHIATRY (1997).0 This is not to say that members could be permanently placed at either end of the continuum. Viewpoints of individuals on the Task Force and Senior Review Board were nuanced, as each tried to balance these two important values as his or her experience dictated for each separate issue. 0 PAT KEITH & ROBBYN WACKER, OLDER WARDS AND THEIR GUARDIANS 9 (1994).0 There was hardly an expert contacted in another state about any particular reform who wasn’t asked at some point during the interview about whether or not there was data showing that a particular reform had reached its intended results. In one case in Florida, revelations that statutory requirements for monitoring were being haphazardly followed (if at all) in some jurisdictions led to a statewide pilot study of monitoring. Vermont is completing an evaluation of every guardianship file in the state as a basis for evaluating its guardianship system. This recognition of the need for evaluation after a decade of reform has spurred plans for what may be called a “Return to Wingspread” conference in 2001 to take a look at what has happened since the ABA recommendations were published in 1989.0 While powers of attorney are often seen as ways in which an individual can ensure that his or her interests are protected, many attorneys in particular expressed concern that the fact that there is no oversight of powers of attorney makes them susceptible to misuse and that guardianships at least have the advantage of remaining under the jurisdiction of the courts.0 That alternatives can have a major impact on guardianships is indicated in a set of interesting statistics from Cook County on the number of petitions presented to the court from 1990-1999 (data on petitions are useful because a high percentage of petitions lead to guardianships). There was a sharp 20% drop in the number of petitions between 1991 and 1992 after the Illinois Health Care Surrogate Act (HCSA) took effect, allowing for certain healthcare decisions to be made without court approval. (information on file with author). Because of this, the Task Force wanted to take particular care in ensuring that the HCSA and other alternatives provided adequate protection for the potential wards before advocating the widespread use of these alternatives. Another concern of the Task Force was the lack of penalties for guardians who abuse their trust. Because the Governor of Illinois has recently established a committee to revise the entire criminal code of Illinois, it was decided to postpone any specific recommendation about penalties until details of that become clear. 0 See infra app. H at p. 87( METRO CHI. INFO. CTR., REPORT ON FOCUS GROUPS OF THE ILL. GUARDIANSHIP REFORM PROJECT (1999)).

28

Guardianship shall be ordered only to the extent necessitated bythe individual’s actual mental, physical, and adaptive limitations.0

Any discussion of guardianship by experts will be suffused with examples representing either its underutilization or overutilization. In the former case, individuals in need of such support are not provided with the protection of guardianship; conversely, others with partial or full decisional capacity have been placed under guardianship inappropriately. The stated goal in Illinois, as well as in most other states, has been to ensure that guardianships are ordered as a last resort when necessary to guarantee the well-being of an individual and to protect him or her from possible neglect, exploitation or abuse. Moreover, the expressed ideal is that, when ordered, a guardianship should be tailored to focus on the particular areas in which an individual is unable to function, maximizing an individual’s self-reliance and independence. Ultimately, the goal is to create a process for balancing the two values of protection and self-determination.0 Maintaining this balance depends on the ability to make a proper assessment of an individual’s capacities, which lies at the core of an evaluation of any guardianship system. When ordered inappropriately, a guardianship can have the unintended consequence of accelerating the pace of functional decline by influencing self-efficacy beliefs.0 “[S]tudies by psychiatrists, psychologists, gerontologists, and environmental psychologists provide persuasive evidence that the mental health of many elderly individuals deteriorates greatly when they are denied the opportunity to make their own choices and exert control over their own lives.”0 That great care must be taken when ordering guardianship is further supported by a recent Minnesota study contrasting the degree of personal control exercised by adults with mental retardation with differing substitute decision-making status. This study confirmed that individuals with no court-appointed substitute decision-maker exercised significantly more personal control than those with a guardian. Most significantly, these differences remained even after preexisting between-group differences in adaptive behavior, IQ, and ICF/MR (Intermediate Care Facility for the Mentally Retarded) status were controlled statistically using covariance.0

The Minnesota study’s findings also suggest that “substitute decision-makers may have been appointed on an inconsistent basis…some individuals with guardians displayed self-determination competencies that were as good as or better than others who had not

0 755 ILCS 5/11a-3(b)(2000).0 For an example of creating a framework that balances liberty and protection, see Stanley S. Herr et al., Can Guardianship and Self-Determination Co-exist? 6 COMMON SENSE (1999). 0 “Through such influences on perceptions of disability, self-efficacy beliefs may importantly affect lifestyles and quality of life at older ages.” While the focus of this particular study was on elderly persons with physical disabilities, one can draw a similar conclusion regarding perception of functional disability and self-efficacy beliefs with those diagnosed as having some mental disability. Teresa Seeman et al., Self-Efficacy Beliefs and Perceived Declines in Functional Ability: MacArthur Studies of Successful Aging, 54B J. GERONTOLOGY: PSYCHOLOGICAL SCI. 214 (1999).0 Jan Ellen Rein. Preserving Dignity and Self-Determination of the Elderly in the Age of Competing Interests and Grim Alternatives: A Proposal for Statutory Refocus and Reform. 60 GEO. WASH. L. REV. 1838 (1992).0 Stancliffe, Abery, Springborg, & Elkin, Substitute Decision Making and Personal Control: Implications for Self-Determination, 38 (5) MENTAL RETARDATION 407,418 (2000).

29

been assigned substitute decision-makers.”0 Thus, as studies by the American Bar Association and the Center for Social Gerontology have concluded, in order to ensure that guardianships are ordered only when warranted and only to the extent necessary to protect the ward, it is imperative that courts be provided with an adequate assessment on which to base their decisions.0 This involves determining, first, what types of information are relevant for assessing the need for guardianship, and, second, how and by whom that information can best be conveyed to the courts.

Providing a Foundation for Assessment: Definitional Framework

The lack of useful evidence about functional ability not only leads to inappropriate guardianships but also increases the number of full guardianships granted unnecessarily.0

The guardianship process is guided by a statute’s definitional framework identifying the characteristics of those subject to guardianship. This definition represents underlying cultural values and norms that direct how society perceives and acts toward individuals with disabilities. Hence, it is not surprising that members of the disability community and other experts have sought to eliminate or change labels in definitions that might stigmatize individuals as being inherently unable to function normally in society:

The severe social disadvantages of labeling people as mentallyill or mentally retarded are augmented when the individual alsois labeled incompetent, thereby confirming general stereotypes about mental disability and providing a further rationalization for the deprivation of social, occupational, and educationalopportunities.0

In the context of guardianship, the result of such labeling can be a gap between the goal of creating tailor-made guardianships only when necessary and the reality in which there is infrequent use of limited guardianships, resulting in guardianships often being broader than necessary.0 Thus, bridging this gap becomes a starting point for any effort of guardianship reform.

Individuals with disabilities have, for some time, strongly protested equating the term “disabled” with “lack of capacity,” which suggests the need for guardianship.

0 Id. at 417.0 ABA COMM’N ON THE MENTALLY DISABLED AND COMM’N ON LEGAL PROBLEMS OF THE ELDERLY, GUARDIANSHIP: AN AGENDA FOR REFORM (1989)[hereinafter ABA]; THE CENTER FOR SOCIAL GERONTOLOGY, NATIONAL STUDY OF GUARDIANSHIP SYSTEMS: FINDINGS AND RECOMMENDATIONS (1994) [hereinafter CTR. FOR SOCIAL GERONTOLOGY].0 CTR. FOR SOCIAL GERONTOLOGY, . supra note 8 at 98.0 Bruce Winick, The Side Effects of Incompetency Labeling and the Implications for Mental Health Law, 1 PSYCHOL., PUB. POL’Y & L. 6-42 (1995). Recognizing its significance for self-determination, social movements in the United States (e.g. Black Power, feminism) often have sought to change attitudes by demanding control over the means of self-identification. 0 CTR. FOR SOCIAL GERONTOLOGY, supra note 8, at 64-65. Iris also notes this with regard to Illinois:. See MADELYN IRIS, THE USE OF LIMITED GUARDIANSHIPS AS THE LEAST RESTRICTIVE ALTERNATIVE FOR THE IMPAIRED ELDERLY: AN ETHNOGRAPHIC EXAMINATION OF THE PROBATE COURT AND THE DECISION-MAKING PROCESS (1986).

30

During the past decade, there has been a trend to change the definition of incapacity in guardianship statutes from one which relies on a diagnosis of the underlying cause of the disability to a functional one that focuses on whether a person is likely to suffer consequences because of an inability to make or communicate decisions in managing his tasks of daily living.0 This shift away from labels or status-based definitions (e.g. disabled, senile, spendthrift, schizophrenic) to those that emphasize a measurement of the functional skills related to one’s decision-making ability is elaborated in the American Bar Association’s AGENDA FOR REFORM. That report recommended that the “definitions of incapacity should focus upon, but not be exclusively limited to, the following elements: (a) incapacity may be partial or complete; (b) incapacity is a legal, not a medical term; (c) a finding of incapacity should be supported by evidence of functional impairment over time; (d) the finding of incapacity should include a determination that the person is likely to suffer substantial harm by reason of an inability to provide adequate personal care or management of property or financial affairs; and (e) age, eccentricity, poverty, or medical diagnosis alone should not be sufficient to justify a finding of incapacity.”0 Moreover, medical diagnosis and prognosis should be viewed as providing an essential consideration in decisions about capacity, but not the only one. “It is also necessary to show that the symptoms of the disorder specifically compromise the ability of the patient to make the decision at hand.”0 Consequently, “once the potentially disabling condition has been diagnosed, the physician must determine whether the condition is actually impairing decision-making ability.”0 Such focus on decision-making capacity is significant to drive home the fact that determinations of the need for guardianship “should never be based on a person’s need for support; [that] standards should make it clear that need for assistance is not necessarily the same as need for supervision.”0

Nonetheless, despite the fact that many states have revised their statutes to reflect a functional model that focuses on decisional capacity, the problem remains that these changes have failed to have the desired impact on how assessment of capacity is really made.0 Thus, while it is true that many states, like Illinois, require and encourage limited guardianships in their statutes (and Illinois, unlike some states, even requires a medical

0ABA COMM’N ON LEGAL PROBLEMS OF THE ELDERLY, CHARTS OF DEFINITION OF INCAPACITY (Suzanne Basinger & E. Wood eds. 1999). This trend to stress an individual’s decision-making capacities should also be framed in a cultural context in which changes in ideas about capacity reflect shifting social values and norms. 0 ABA, supra note 8, at 15.0 Robert Roca, Proceeding of the Conference on Ethical Issues in Representing Older Clients: Determining Decisional Capacity: A Medical Perspective. 62 FORDHAM L. REV. 1177, 1188 (1994).0 Robert Roca, Physicians and Guardianship: A Brief Commentary, 7 MD. J. OF CONTEMP. LEGAL ISSUES 239, 242 (1995-96). 0 David Flower, Legal Guardianship: The Implications of Law, Procedure, and Policy for the Lives of Persons with Developmental Disabilities, in CHALLENGES FOR A SERVICE SYSTEM IN TRANSITION ENSURING QUALITY COMMUNITY EXPERIENCES FOR PERSONS WITH DEVELOPMENTAL DISABILITIES 442 (M.F. Hayden and B.H. Abery eds. 1994).0 Charles Sabatino, Competency: Refining Our Legal Fictions, in OLDER ADULTS’ DECISION-MAKING AND THE LAW (Marshall .B. Kapp et al. eds. 1996). Calls around the country also produced no one who saw changes in statutes leading to more limited guardianships, although Keith does note some tendency in her study of three states (Missouri, Iowa, and Colorado): “Even though it happened infrequently, modification of the type of powers occurred more often following statutory revision.” Pat Keith and Robbyn Wacker, OLDER WARDS AND THEIR GUARDIANS 180 (1994) [hereinafter Keith].

31

report), such provisions seem to have minimal effect on increasing the numbers of limited orders, with the apparent exception of the state of Minnesota.0 In an ethnographic study that specifically looked for evidence of increased limited guardianships in three Illinois counties, Iris found that they were rarely ordered. Among the reasons given by those interviewed were that attorneys and judges perceive limited guardianships as time- consuming and difficult to administer and that some physicians seemed unable to either adequately assess or communicate partial incapacity. This fact was revealed in the failure of medical reports to provide information about an individual’s strengths in addition to his deficiencies.0

Trying to find the key to more limited or tailor-made guardianships by unlocking Minnesota’s secret leads to no precise explanation.0 Even those in Minnesota who work in the guardianship agency could only suggest some possible reasons: first, that its statute encourages limited orders by requiring the petitioner at the outset to petition for either limited or plenary guardianship; and, second, and possibly even more important, that there has been a concerted effort to change attitudes toward aging and disability to provide a foundation for such limited guardianship.0

It is, of course, impossible to expect that any change in attitudes towards the elderly or individuals with disabilities will take place quickly or automatically. In fact, as noted previously, these attitudes are complex and often reflect contradictory tendencies: in the case of guardianship, the fundamental American values of liberty and self-determination versus the responsibility to care for those in need. Once having identified the key components of the assessment process, the goal must then be to put into place tools for producing a system that equitably balances these two values.

0 CTR. FOR SOCIAL GERONTOLOGY, supra note 8, at 100-01. On the other hand, Keith notes that in the three states that were a part of her study, “there was some support for the hypothesis that more limited guardianships occurred as a result of statutory changes.” KEITH, supra note 17 at 177.0 See MADELYN IRIS, THE USE OF LIMITED GUARDIANSHIP AS THE LEAST RESTRICTIVE ALTERNATIVE FOR THE IMPAIRED ELDERLY: AN ETHNOGRAPHIC EXAMINATION OF THE PROBATE COURT AND THE DECISION MAKING PROCESS (1986). Other studies found a similar lack of limited orders: see Winsor Schmidt, Assessing the Guardianship Reform of Limited Guardianship: Tailoring Guardianship, or Expanding Inappropriate Guardianships? 2 J. ETHICS, L. & AGING 5-14 (1996). For further descriptions of Iris’ Illinois study, see also Madelyn Iris, Guardianship and the Elderly: A MultiPerspective View of the Decisionmaking Process, 28 THE GERONTOLOGIST 39-45 (Supp. 1988); Madelyn Iris, Threats to Autonomy in Guardianship Decision Making, GENERATIONS 41 (Supp. 1990); and Madelyn Iris, EXECUTIVE SUMMARY: IMPLEMENTATION OF THE DISABLED ADULTS STATUTE IN ILLINOIS: A SURVEY AND ANALYSIS OF THE 1985 DOCKET AND COURT RECORDS IN COOK, LAKE AND DUPAGE COUNTIES (1989).0 Here it should be noted that while most experts supported the goal of more limited guardianships, one suggested that encouraging such could lead to increased risk of inappropriate guardianships as “the guardianship net is expanded by limited guardianships.” He further concludes that “limited guardianship is probably not cost-effective in a cost-benefit analysis sense for a guardianship system that is first responsible for persons with total legal disability.” Schmidt, supra note 19, at 10. The question remains, however, whether one should put a price tag on individual liberties, and it is for this reason that the balancing act continues between the need for care and the value of self-determination.0 Here, too, it was agreed that success of the system depends on the initial evaluation of capacity and a continued monitoring of the functioning of the wards to check for any changes in capacity. A closer look at Minnesota would also “be useful to determine whether limited guardianship and conservatorships have had real implications for maintaining the maximum independence and dignity of respondents or if they have little actual effect on the respondents’ lives. CTR. FOR SOCIAL GERONTOLOGY, supra note 8, at 89.

32

Actualizing the Definition: The Assessment Process

Definitions of incapacity must shift the focus away from useof the physician’s medical diagnoses and psychiatric testing as sole measures of incapacity…The evaluation of incapacitymust be extended to include functional ability as well as cognitive functioning.”0

Guardianship adjudication links a statute’s definitional framework with a procedural mechanism to implement that definition. While a good definition is necessary to guide the adjudication process, it is not sufficient to guarantee that the principles inherent in the definition are carried out. As observers have long recognized, any such success depends “primarily, not so much on changes to statutory definitions, but on...retooling of the process for determining capacity and the need for guardianship.”0

Appraising this implementation process includes identifying the key professionals in assessment, creating pragmatic tools for these actors to conduct evaluations, and assuring that courts have access to the results of such evaluations. Here, access means not merely receiving the formal information but, even more important, receiving information in a lucid form that facilitates the court’s decision-making process and that, when necessary, can be translated into a tailor-made limited guardianship.

Identifying the Key Participants

I. CriteriaWho the key participants in the assessment process should be depends, first, on

the criteria for assessing whether or not individuals have the capacity to make or communicate decisions and then determining what professional expertise is necessary to evaluate such criteria. 0 It is generally agreed that the tendency to depend exclusively on the medical report for determining whether or not an individual is in need of a guardian is often inadequate0 and that any useful evaluation of decisional capacity requires a multidisciplinary approach including medical, psychological and social factors.0 Hence, while the report of a physician may be necessary, it may not be sufficient in answering 0 Keith., supra note 17, at 58.0 Sabatino, supra note 17, at 25.0 Here there is some progress in the MacArthur Assessment project and that of the Veterans’ Administration where procedures are being developed to focus primarily on those criteria related to decision-making impairments. It is recognized, however, that much further research is necessary to understand how the brain’s functions impact on the intricacies of decision-making. See THOMAS GRISSO & PAUL APPELBAUM, MACARTHUR COMPETENCE ASSESSMENT TOOL FOR TREATMENT (1998); see also VA NATIONAL CENTER FOR COST CONTAINMENT, ASSESSMENT OF COMPETENCY AND CAPACITY OF THE OLDER ADULT: A PRACTICE GUIDELINE FOR PSYCHOLOGISTS (1997). See also articles that discuss this and other approaches to competency in 2 PSYCH., PUB. POL’Y & L. (1996).0 M.C. Juretic et al., Physician input into guardianship cases involving the elderly, 8/1 INT’L J. OF GERIATRIC PSYCHIATRY 1009 (1993). Physician input was evaluated in Harris County, Texas. Of the 40 physician letters reviewed: 10 did not include a medical or psychiatric diagnosis; 37 did not include results of a formal mental status exam; 19 were unsupported statements of incompetence; and 29 failed to include a statement on prognosis or potential need for reevaluation. 0 For geriatric assessment, a multidisciplinary approach is generally favored. Bradley, Goals in Geriatric Assessment: Are We Measuring the Right Outcomes? 40 THE GERONTOLOGIST 191 (2000).

33

the questions regarding decisional capacity. This should form the foundation for a legal decision and thus should be supplemented with types of information gleaned from a multidisciplinary approach to capacity assessment. As noted in the National Probate Court Standards:

Although a physician may provide valuable informationregarding the capacity of the respondent, incapacity is amultifaceted issue and the court may consider using otherprofessionals whose expertise and training may give themgreater insight into representations of incapacity…Evaluationby a multidisciplinary team may provide the court with a fullerand more accurate understanding of the alleged incapacity of the respondent…0

II. Professionals

Engaging experts from multiple disciplines in the assessment process may take different forms. Florida, recognizing the need for a multidisciplinary approach, has set up a system whereby assessment is accomplished by a committee of three professionals: “[O]ne member must be a psychiatrist or other physician. The remaining members must be either a psychologist, gerontologist, another psychiatrist or other physician, a registered nurse, nurse practitioners, licensed social worker, a person with an advanced degree in gerontology from an accredited institution of higher education, or other person who by knowledge, skill, experience, training or education may, in the court’s discretion, advise the court in the form of an expert opinion. One of three members of the committee must have knowledge of the type of incapacity alleged in the petition.”0 Other states, such as Minnesota, have sought to create and recommend the use of forms that require expertise of professionals similar to the ones participating in the Florida system.

Generally speaking, beyond the role of physicians, psychologists, and social workers in the assessment process, the key link to the court has been the court investigator/guardian ad litem/court visitor who “serves as the eyes and ears of the court, making an independent assessment of the need for a guardianship”0 by providing courts with an assurance that the evaluation is complete and that the viewpoint of the potential ward has also been considered in the process. States vary in requiring appointment of a guardian ad litem.0 In the case of Illinois, while custom seems to promote the

0 Comm’n on Nat’l Probate Court Standards, National College of Probate Judges & Nat’l Ctr. for State Courts, Determination of Incapacity, in NAT’L PROBATE COURT STANDARDS § 3.3.9: (1993). This position has been reiterated in the compilation of recommended judicial practices of the National Conference of the Judiciary: “…the court should not automatically assign undue weight to the medical diagnosis but should balance it with information about the behavior and limitations of the proposed ward.” ABA COMM’N ON LEGAL PROBLEMS OF THE ELDERLY & THE NAT’L JUDICIAL COLLEGE, STATEMENT OF RECOMMENDED JUDICIAL PRACTICES 24 (Erica Wood ed., 1986).0 Fla. Sta. Ann para. 744.331(3)0 NAT’L PROBATE COURT STANDARDS, supra note 27, at 59.0 In the Center for Social Gerontology study, eight of the ten states provided for appointment of an investigator/guardian ad litem, two of which (Oregon and Washington) require such an appointment in all cases. See CTR. FOR SOCIAL GERONTOLOGY, supra note 8, at 16. On the other hand, Vermont requires the appointment of an attorney for every alleged incapacitated person, and then it is up to the attorney to

34

appointment of a guardian ad litem, the statute does allow that such an appointment “shall not be required when the court determines that such appointment is not necessary for the protection of the respondent or a reasonably informed decision on the petition.”0

In addressing the role of the guardian ad litem/court visitor/court investigator, two points of contention should be noted. First, with regard to the name itself, many states have adopted a term other than “guardian ad litem,” which is seen as “misleading in the context of guardianship proceeding since…the individual so termed does not perform duties normally associated with the role of guardians ad litem in traditional litigation.”0 In an interview with a guardianship official in Washington state, it was noted that if there were any one thing that he would revise after having lived with his state’s new statute for several years, it would be the name “guardian ad litem,” which continues to confuse and undermine the intended investigatory/evaluative role.0 Moreover, for the layman, both family members and service providers, using “guardian” in the designation “guardian ad litem” often contributes to an ambiguity and confusion over expectations, as revealed in remarks similar to the following one that came forth during the Guardianship Reform Project’s focus groups and hearings: “Can a guardian ad litem be appointed for a retarded person who is his/her own guardian? Is a close family member given primary consideration to serve as guardian ad litem?”

A second debate exists as to whether the role should be filled by an attorney or nonattorney. Arguing for the former is the fact that there are some legal matters (e.g. right to trial by jury) that must be explained to the potential ward by the court investigator. On the other side is the argument that since the most significant information for determining decisional capacity is medical, social, and psychological, attorneys are not necessarily the best-suited to perform this function for the courts. In fact, “legal training…may not qualify a person to evaluate and make recommendations in all the areas required by the statute.”0

Whatever name is used and whoever fills the role, if the duties to provide information about social, medical, and psychological facts are properly carried out, most experienced commentators agree that well-trained guardians ad litem/court investigators can have a significant impact on guardianship petitions.0 As noted in recommendations

recommend whether a guardian ad litem should be appointed. That state is now in the process of evaluating all 1,500 of its guardianships as a preliminary effort to assess where its guardianship system needs improvement. Interview with Erica Wood, Assoc. Staff Dir., ABA Comm’n on Legal Problems of the Elderly.0 755 ILCS 5/11a-10(a)(2000).0 James Peden, The Guardian ad Litem under the Guardianship Reform Act: A Profusion of Duties, A Confusion of Roles, 68 U. DET. L. REV. 30 (1990). 0 This advice, as well as similar complaints about the guardian ad litem nomenclature from many others in Illinois, was heeded in the recommended revision of 755 ILCS 5/11a-10, much of which was based on Washington’s guardianship statute, Rev. Code Wash. (ARCW) § 11.88.090 (2000).0 If, as desired, the statute requires the court investigator to describe the nature, cause, and degree of incapacity as well as the nature of the care, treatment and facilities required by the potential ward, such descriptions would depend on knowledge not commonly held by legal practitioners. Paul Clark, What Will We Do with Dad ?: Guardianship Reform in Idaho and Its Implications for the Elderly, 36 IDAHO L. REV. 269,292 (2000).0 Cook County has established training for pro bono guardians ad litem; for a well-developed and extensive training certification program, see GUARDIAN AD LITEM TRAINING PROGRAM ADVISORY GROUP AND AGING AND ADULT SERVICES ADMINISTRATION, THE TITLE 11 RCW MODEL GUARDIAN AD LITEM TRAINING PROGRAM (1997).

35

adopted by the National Conference of the Judiciary on Guardianship Proceeding for the Elderly, this includes providing the court with an overview of the potential ward’s capacity, appraising who should be a guardian, recommending placement of the potential ward, identifying services available, and assessing less restrictive alternatives to the creation of a guardianship.0 While quantitative data from across the country is limited, the results of one relatively long-term project affirm the potential significance of the guardian ad litem role. Borrowing on the protocol of the National Probate Court Standards, the University of Tulsa Legal Clinic began a guardian ad litem (GAL) program in 1996.0 In this program, students were required to visit with the proposed ward alone; they would arrange for the individual to be present at the hearing, when asked to do so by the individual, they would request that an attorney be appointed; and they would get financial, medical and other relevant social and psychological information about the individual to report to the court. In 23 percent of the 132 guardianship cases examined, the student assisted the proposed ward in asserting a statutory right and in 32 percent, the student GAL determined that some aspect of the petitioner’s request should not be granted.0 The significance of these results, despite the recognized complexity of the evaluation process, bodes well for any dedicated effort at improving the assessment process.

III. Tools for Evaluation

Finally, to design assessment tools requires taking into account both the above-mentioned criteria and individuals involved in the assessment process. Courts receive various written evaluations on which they are to make their decisions. Examples abound of forms (e.g. medical report forms, court investigator forms) that strive to provide a multidisciplinary perspective.0 It is imperative that such forms, which represent in their questions the underlying core principles of any state’s guardianship system, be field-tested for their efficacy in conveying the information to the courts about an individual’s decisional capacity. This is a first step to ensure that guardianships will be ordered only when necessary and only to the extent required by the person’s particular impairments.

0 STATEMENT OF RECOMMENDED JUDICIAL PRACTICES, supra note 27, at 4.0 Suzanne Levitt, Implementing National Probate Court Standards: A Model, 2 T.M. COOLEY J. PRAC. & CLINICAL L. 7 (1998). 0 Telephone interview with Prof. Suzanne Levitt, Drake University Law School (Oct. 7, 1999).0 The most expansive assessment system that was revealed during research was that in Ontario, Canada. Its Capacity Assessment Office provides an in-depth look at most of the criteria expounded upon by experts. While the Canadian political system may differ from that of the United States, it still bears looking at in the case of guardianship in that both countries share and are working within the same fundamental cultural value system. See OFFICE OF THE PUBLIC GUARDIAN AND TRUSTEE, ONTARIO MINISTRY OF THE ATTORNEY GENERAL, GUIDELINES FOR CONDUCTING ASSESSMENT OF CAPACITY (1996); CAPACITY ASSESSMENT OFFICE, MANUAL FOR CAPACITY ASSESSORS UNDER THE SUBSTITUTE DECISIONS ACT, 1992 (1995). See also forms developed for Maryland by JOAN O’SULLIVAN, CHECKLISTS AND FORMS FOR ADULT GUARDIANSHIP AND ALTERNATIVES (1999).

36

Task Force Findings

1. The failure to appoint a guardian when one is needed hinders the ability of individuals to receive appropriate services and achieve a reasonably adequate quality of life. It also imposes unnecessary burdens on relatives, friends, government, and private entities.

2. The inappropriate use of guardians, particularly when an individual has serious functional limitations but no decisional impairment, imposes unnecessary burdens on the court system and other government and private entities, and interferes with the autonomy of Illinois citizens. The unnecessary use of plenary rather than limited guardians also interferes with the autonomy of Illinois citizens.

3. The statutory definition for appointing a guardian sometimes contributes to the unnecessary appointment of a plenary guardian because it does not focus sufficiently on the capacity of the respondent to make and communicate specific decisions.

4. While many judges adhere to a clear and convincing standard of proof, there is no explicit standard in the Illinois guardianship statute and some confusion about the presence of any such standard in related case law.

37

5. Courts are often not provided with sufficient detailed information concerning the decision-making capacities of the respondent. Instead, courts are often provided with information about physical or other impairments, requiring other types of assistance, but not requiring the appointment of a guardian, or only requiring the appointment of a limited rather than a plenary guardian.

6. Many of the written physician reports which accompany guardianship petitions fail to provide the court with sufficient detailed information concerning the specific decision-making capacities of the respondent.

7. The current guardianship ad litem system often does not fulfill its function of assisting the court to make accurate decisions because

(a) courts are not required to appoint a GAL; therefore, one is often not appointed in cases involving guardianship of the person, particularly when the party is indigent;

(b) there are insufficient state and local funds to pay for GAL services when no estate is available to meet the costs;

(c) there is no statewide system in place to recruit persons to act as GALs; and(d) many GALs are not trained to perform the difficult tasks assigned to them.

38

Task Force Recommendations Ensuring the Appropriate Determination of the Need for Guardianship

1. Change all references to “disabled” and “disabled person” to “person in need of a guardian” in 755 ILL. COMP. STAT. 5/11a (1979). Modify statutory provisions 755 ILL. COMP. STAT. 5/11a-1,2,3, &11 (1979), which apply to the standard for appointing a guardian, to focus on the capacity of the respondent to make and communicate decisions. See pages 79-80 for revision of 755 ILL. COMP. STAT. 5/11a-1-3 and page 85-86 for revision of 755 ILL. COMP. STAT.5/11a-11.

2. Add a provision to 755 ILL. COMP. STAT. 5/11a-3 which designates the “clear and convincing” standard of proof for adjudicating guardianship petitions. See page 80 for revision of 755 ILL. COMP. STAT. 5/11a-3(c).

3. Revise the Petition for Guardianship form to reflect the above standards. See Appendix A, page 57, for proposed petition form.

4. Field-test the attached Medical Report form that focuses on the capacity of the respondent to make, communicate, and implement decisions. See Appendix B, page 59, for proposed Medical Report form and page 81 for related revision to 755 ILL. COMP. STAT. 5/11a-9.

5. Expand the investigative role of and revise the name of guardian ad litem to court investigator. The appointment of a court investigator may be made at the discretion of the court EXCEPT when the potential ward is not present in court at the time of adjudication, in which case, appointment is mandatory. See page 82-84 for revision of 755 ILL. COMP. STAT. 5/11a-10.

6. Fill the need for more court investigators by training and certification of non-lawyers with appropriate skills to fill this role when the court deems it necessary.

7. Ensure that, in cases concerning complex financial circumstances, persons serving as court investigators be qualified to assess financial issues.

8. Field-test a Court Investigator Report form that focuses on the ability of the respondent to make, communicate, and implement decisions. See Appendix C, page 63, for proposed Court Investigator Report form.

9. Design a program for creating a long-term funding mechanism to recruit, train, certify, and supervise court investigators.

39

Chapter 3Monitoring: Ensuring Guardianship Accountability

Commentary

Lest sight be lost of the fact, we remind all concerned that acourt of equity assumes jurisdiction in guardianship matters to protect those who, because of illness or other disability, are unable to care for themselves. In reality the court is the guardian; an individual who is given that title is merely an agent or arm of that tribunal in carrying out its sacred responsibility.0

I’ve seen horror stories about guardians…gone into homes where people have been caged, tied up to wheelchairs, andgagged…0

I had a guardian for seven years. I never was asked wouldI like to have my room painted or buy myself a new pair ofshoes out of my pension money. I had earned that money…I went to my job for 27 years…Today, I have my rights back, but the money for seven years has not been accounted for.

I would have loved to know how much money was being spent by my guardian, but I was never told—not once.0

Why is it that it’s very easy to get a guardian when you need one, but getting a guardianship dissolved is a major chore?…my family is contesting my attempt to dissolve it…they still think I’m incompetent…it’s very frustrating…I don’t want to sue them because they saved my life.0

Because an individual’s circumstances and condition may change over time, the monitoring of guardianships should be seen as an extension of the assessment process meant to ensure that a person is placed under guardianship only when necessary and only to the extent required by his or her decisional incapacities. Even when a guardianship order is appropriately based on the evaluation of decisional capacity and tailored to meet the particular needs of the ward, a system needs to be in place that allows courts to keep continually abreast of the condition and circumstances of the ward. Here, the purpose of court monitoring is to ensure that there are no instances of post-order abuse or neglect, and that the guardian is working for the benefit of the ward. This means not merely

0 Kicherer v. Kicherer, 400 A.2d 1097, 1100 (1979).0 Testimony by police officer at public hearing infra p.140. 0 Testimony at public hearing, infra p.130.0 Testimony at public hearing infra p.129.

40

maintaining the status quo with regard to decisional capacity but also seeking to “assist the ward in the development of maximum self-reliance and independence.”0

In guardianship reform efforts that followed the notable Associated Press Report, great attention was paid to enhancing the post-adjudication supervisory role of courts.0 Among the recommendations noted in a focused study of monitoring were

1. that guardians report at least yearly on the ward’s status;2. that guardians propose how they plan to enhance the ward’s well-being;3. that guardians be trained in how to fulfill their responsibilities;4. that a computer or tickler system be created to assure that the court knows when

guardians’ personal status reports and accounting are due or are late;5. that an effective system exists to review the guardians’ reports to the court;6. that wards’ personal circumstances are properly monitored; and7. that sufficient funds or revenues from state and local funding agencies exist to

monitor guardianship cases adequately.0

Although the above recommendations are meant to provide a blueprint for effective monitoring, current systems lie on a continuum from those that require annual reports to those that provide for an extensive inspection program.0 Even in the case of the more developed programs, many commentators continue to express frustration with the inconsistency in carrying out statutory monitoring requirements, such as a failure to develop well-considered initial guardianship plans or a laxity in closely scrutinizing annual reports.

There are several explanations for the present-day difficulties. The first pertains to an understandable reluctance to recognize that a “guardianship is not an ordinary type of lawsuit in which the court’s role is merely that of fact-finder and adjudicator. It has a much deeper involvement—a much more significant function,”0 which may require the court to go beyond remaining “wholly passive until some interested person invokes its power to secure resolution of a matter.”0 Recognition of this unique active role of the judiciary to mentor guardianship

0 The Illinois statute is representative of this goal to enhance a ward’s quality of life. 755 Ill. Comp. Stat. 5/11a-17(a) (2000).0 See ABA COMM’N ON LEGAL PROBLEM OF THE ELDERLY, GUARDIANSHIP: AN AGENDA FOR REFORM (1989).0 Sally Balch Hurme, STEPS TO ENHANCE GUARDIANSHIP MONITORING 1-3 (1991). Similar support for monitoring reports indicated in ABA COMM. ON LEGAL PROBLEMS OF THE ELDERLY, NATIONAL CONFERENCE OF THE JUDICIARY ON GUARDIANSHIP PROCEEDINGS FOR THE ELDERLY, STATEMENT OF RECOMMENDED JUDICIAL PRACTICES 5 (1986): “Guardians should be required to make a periodic report as to the ward’s present condition and the continuing need for a guardian, either limited or plenary…A system of calendaring such reports should be established to ensure prompt filing, with sanctions provided for failure to comply.” Id.0 Id. at Chart IV. This chart on the guardianship monitoring requirements in the fifty states and the District of Columbia has been updated. (on file) 0 Law v. John Hanson Sav. & Loan, 42 Md. App. 505, 512 (1979). See also FEASIBILITY STUDY OF VOLUNTEER GUARDIANSHIP MONITORING PROGRAM OF SPOKANE COUNTY SUPERIOR COURT (Feb. 2000).0 Unif. Probate Code art. III cmt., 8 U.L.A. 220 (1983 and Supp. 1994).

41

cases may be necessary to encourage court personnel to utilize skills not normally required.0

A second explanation suggests that the guardianship system has not been designed to efficiently handle “the myriad of issues that confront the guardians in managing the affairs of today’s [incapacitated] elderly after their initial appointment.”0 Thus, even when judges desire careful oversight, the courts, already overburdened with

heavy caseloads, are not equipped to carry out such a demanding task. It would require an increase in staff with funds that are often not forthcoming.0

Finally, a third factor contributing to weak monitoring is the understandable desire that family members, who are often considered the most suitable choice, should be encouraged in, or at least not discouraged from, becoming guardians when the need arises. This aim can make courts reluctant to impose too many burdens on family members who might become unwilling or afraid to take on the role of guardian.

The Benefits of Monitoring

It is clearly recognized that guardianship is often required to protect an individual. At the same time, since guardianship has also been considered as perhaps the most extensive deprivation of personal rights in our society other than imprisonment and involuntary commitment,0 attentive oversight by the state that imposed the guardianship is important to ensure that the dual goals of protection and self-determination are realized.

In terms of the need for vigilance about self-determination, since most statutes require that guardianships be limited only to an individual’s functional incapacities, it is imperative that periodic reporting and review take place in order to verify that no change in the guardianship order is necessary—either the restoration of some or all rights or, in the reverse, the need for more intervention in the ward’s life. Such consistent monitoring can overcome the tendency to presume that individuals with disabilities, particularly, but not exclusively, the elderly, are incapable of reversing what is viewed as an inevitable “downhill”

0 SALLY HURME, Current Trends in Guardianship Reform, 7 MD. J. CONTEMP. ISSUES 143,183 (1995). There is a growing movement to encourage the “therapeutic” role of courts, which, if adopted, could have an impact on how probate and other courts approach guardianship cases. See David Wexler and Bruce Winick, ESSAYS IN THERAPEUTIC JURISPRUDENCE (1991).0 Norman Fell, Guardianship and the Elderly: Oversight not Overlooked, 25 TOL. L. REV. 189, 193 (1994).0 One author who has surveyed the recent legislation on monitoring noted that despite the present trend toward proactive investigative approach to assure that a guardianship is necessary, the impact is questionable since “none of this new legislation authorizes sufficient funding for investigative staffs who would monitor the status of the guardianship cases.” Frank Johns & Vicki Joiner Bowers, Guardianship Folly: The Misgovernment of Parens Patriae and the Forecast of its Crumbling Linkage to Unprotected Older Americans in the Twenty-first Century—A March of Folly? Or Just a Mask of Virtual Reality? 27 STETSON L. REV. 1, 77 (1997). 0 CTR. FOR SOCIAL GERONTOLOGY, NATIONAL STUDY OF GUARDIANSHIP SYSTEMS: FINDINGS AND RECOMMENDATIONS 98 (1994)[hereinafter CTR. FOR SOCIAL GERONTOLOGY].

42

trend. In fact, many individuals “are able to limit or overcome decline because of personal characteristics, through treatment or by adaptation.”0

Moreover, from the standpoint of the guardian, effective court oversight to verify that the guardianship order is being followed has a positive value in guiding and assisting the guardian in his or her efforts to care for the ward. This begins with an initial guardianship plan, a proactive document that outlines the needs of the ward for the court, providing a framework for the guardian to consider specific solutions to a ward’s strengths and limitations, indicating the extent of the ward’s participation in these solutions, and finally, furnishing a reference point for subsequent accountability to the court. Probate courts are familiar with the value of an inventory to establish the baseline against which later accountings can be measured. In much the same way, the guardianship plan of personal guardians establishes a basis for comparing later personal status reports.

In this sense, the monitoring process can be seen not only as meeting the court’s responsibility to ensure that the ward is better off with a guardian than he would be without such support but also providing continual training for the guardian. Regular appraisal, from the initial guardianship plan through formal guardian annual reports, provides guardians with the opportunity to evaluate a ward’s medical, psychological, and social status and, together with the court, alter care plans when deemed necessary.

Evaluating Monitoring Systems

In the initial 1987 Associated Press examination of guardianship practices, it was revealed that accountings were missing or incomplete in 48 percent of the files examined and that in another 13 percent, the files were empty except for the court orders granting guardianship powers.0 Similarly, in Illinois, a 1989 study of more than 300 guardianship files in several counties found “that annual reports were on files in 67.4% of the cases, reports were current for 65.2% of the cases and inventories had been filed in 77%.”0 Over the last decade, these earlier disclosures have been reinforced by all too frequent newspaper revelations about guardianship abuses across the country, abuses that very well might not have occurred if there had been adequate monitoring of guardians by the courts.0 Such studies, together with revelations of systems abuse in the media, have led to support for legislative changes to encourage improved guardianship oversight throughout the country.

Since the Associated Press first brought to light such systemic failures, many states including Illinois, under the rubric of “guardianship reform,” have

0 See Fell, supra note 12, at 192. 0 See Hurme, supra note 7, at 8. Other studies in Florida, Missouri, and New York confirmed the AP results. Id. at 9-10. 0 Id. at 10. 0 Wendy Wendland-Bowyer, Who’s Watching the Guardians? DET. FREE PRESS, May 24-26, 2000. See also Peter Weaver. Guardians drawing increased scrutiny,40/5 AARP BULLETIN 9 (May 1999) and Christopher Manes, How three investigators uncovered a massive conservatorship scandal, CALIFORNIA LAWYER (Jan. 2000).

43

altered their statutes. One problem in trying to gauge the effectiveness of this reform is the lack of subsequent formal evaluation of systemic changes that have taken place. The result is often a dependence on both anecdotal evidence and composite expert opinion of individuals who have been engaged with guardianship matters over a long period of time. This is particularly true in the case of guardianship monitoring, where quantitative data about problems could be instructive in guiding efforts to ensure compliance with the intentions of the courts.0

The in-depth research on monitoring that has been conducted and published by the American Bar Association has noted that, while most states statutorily provide for some type of continued court supervision after the appointment of a guardian, there is a wide divergence in monitoring practices, involving both volunteers and professionals. At the time of the study, 43 states, including the District of Columbia, had “some requirement that the guardian of the person report on the personal well-being of the ward. Of these, 30 require[d] a report annually, 1 annually then biennially, 4 biennially, 1 semi-annually, and 7 as the court require[d].”0

However, as one expert noted, almost 20 years after California instituted its elaborate monitoring system, “few other states have actually provided the necessary funding and staffing [for monitoring]. Most states provide little or no oversight of a guardian’s actions, reviewing only accountings and reacting to petitions or other accusations. Most states offer no proactive oversight that determines whether the quality of the lives of wards…are maintained, let alone enhanced.”0

Public Volunteer and Professional Models

Various systems have been devised to monitor compliance with guardianship orders and to evaluate any changes that may have occurred in the ward’s capacities or circumstances. These range from California’s system of monitors (called “court investigators”), who both investigate the need for a guardianship and periodically visit with the wards afterwards, to volunteer programs, many of which came into being as a result of the AARP’s model program established in the late 1980s.

While all jurisdictions now have monitoring statutes governing the review and enforcement of guardianship orders,0 in many of these jurisdictions, like Illinois, reports regarding personal matters are left up to the discretion of judges, and often no court action is taken when guardians fail to file the required financial

0 Plans are now underway to conduct such a comparative study of state monitoring systems. Telephone interview with Erica Wood, Assoc. Staff Dir., ABA Commission on Legal Problems of the Elderly. 0 See Hurme, supra note 7, at 17.0 See Johns & Bowers, supra note 13, at 77. 0 “…all fifty states and the District of Columbia authorize courts to order financial accountings. In 1991, forty-three jurisdictions required guardians of the person to report on the incapacitated person’s personal status and ten states required guardians of the property to report on both financial and personal status. All of the new statutes, with the exception of Delaware’s, require the guardians of the person and of the estate to file annual financial and personal status reports.” Sally Hurme, Current Trends in Guardianship Reform, 7 MD. J. OF CONTEMP. LEGAL ISSUES 184 (1995-96).

44

or personal reports.0 In 1999, indications that statutory requirements for monitoring were not being met compelled the State of Florida to begin a complete review of its monitoring program and initiation of a one-year pilot program on auditing procedures.0 Likewise, one large district in New York conducted a similar evaluation of its monitoring, discovering and correcting the problem that, despite a monitoring system of court examiners established to reinforce the new Mental Hygiene Law Article 81,0 annual guardian reports were

neither being filed nor reviewed on a regular basis.0 Disparity in the quality of monitoring also exists among various counties

upon whom the responsibility rests for implementing the programs within jurisdictions. In California, with its active and independent fact-finding role for court investigators, the monitoring system has still been shown to be only as good as the commitment of the personnel.0 This also seems to be true in Texas, which borrowed from California’s court investigator program in designing its monitoring program and has prescribed an elaborate system for keeping courts informed of guardianship cases. Texas requires courts to review each guardianship annually to see if it should be continued, modified, or terminated. Despite these prescriptions and the fact that Texas letters of appointment expire one year and 120 days after their issuance and can be renewed only if the accounting has been filed and approved, many counties have not yet developed an operational system. Thus, some urban counties utilize their adequate resources, using auditors and court investigators to ensure accountability in guardianships. Because the financial burden for monitoring is placed on each county, the result has been that most of the smaller rural counties’ budgets cannot support staff for effective oversight. This problem of the lack of monitoring is exacerbated by the fact that elected county judges do not have to be attorneys, yet they are expected to handle a wide range of cases, only one type of which is guardianship. Ultimately, then, finding ways for statewide financing and support for monitoring may be a key step toward improving guardianship accountability.

0 Phillip Tor & Bruce Sales, A Social Science Perspective on the Law of Guardianship: Directions for Improving the Process and Practice, 18 LAW & PSYCHOL. REV.30 (1994).0 Telephone interview. The project in Broward County comprises seven professional staff, four of whom look at financial auditing, two who are involved in plans for personal care and one office manager. There is a three-level auditing process: level one involving limited review of every plan; level two, a sampling of reports among approximately 5,500 annual ones for Broward County; and level three, about 1% of the total, in which a detailed look at the entire case takes place. Id.0N.Y. MENTAL HYGIENE LAW §81, ¶32 (Consol. 1999). For discussion of Article 81, which created a single statute establishing a guardianship system that satisfies person and/or property management needs of an incapacitated person and affords the greatest amount of independence and self-determination. Neil Posner, The End of Parens Patriae in New York: Guardianship under the New Mental Hygiene Law Article 81, 79 MARQ. L. REV. 603, 614 (1996).0 Telephone Interview with Emily Olshansky, staff of New York Appellate Court (July 12, 2000). This has now been partially corrected through naming a court examiner immediately upon appointment of a guardian rather than waiting, as was previously done, until more than a year when the guardian’s first annual report would be due. 0 Monitoring is only as effective as those undertaking it, as seen in a recent scandal in California implicating a professional guardian and a judge. Christopher Manes, Guardian Angels, CALIFORNIA LAWYER (Jan. 2000).

45

On the other end of the spectrum, AARP’s volunteer program began in 1988 as a two-year demonstration project funded by the State Justice Institute and AARP. When a court was selected as a suitable site for its monitoring program, AARP provided instruction on volunteer management for court staff and training for the volunteers. Although AARP is no longer involved directly in establishing volunteer monitoring programs, the program had expanded to approximately 53 courts in 18 states during the first few years for which figures exist.0

Phone interviews with coordinators of several volunteer monitoring programs revealed some major concerns in designing such systems. First, the most difficult aspect has been recruiting and retaining new volunteers.0 AARP’s active participation in the initial stages of recruiting and training volunteers and coordinators was deemed extremely significant for getting the projects off to a strong start.0 The end of AARP’s active participation has created a resource gap that has not easily been filled, according to many informants who also noted difficulties in finding, retaining, and training good volunteers.0

Another need is for adequate professional staff to augment the work of the volunteers, whose personal plans and obligations can sometimes prove problematic for scheduling visits to guardians and wards. In a recent feasibility study for a volunteer guardianship program in Spokane County, Washington, it was noted that “[t]o be successful, a volunteer program needs program organization and development; procedures for volunteer recruiting, screening, and doing background checks; written mission statements and job descriptions; a coordinator who has administrative proficiency, interpersonal skills, and knowledge about the subject matter; and support of and commitment to the program by the supervising agency.”0 It concluded with a series of

0 Sally B. Hurme, National Guardianship Monitoring Program Current Sites (1998) (on file with author).0 Here, the need to have a careful selection process was emphasized to assure quality volunteers. 0Adaptation of materials developed by the AARP with instruction by community professionals seems to be a common process. See COUNSEL FOR THE ELDERLY, INC., AARP NATIONAL GUARDIANSHIP MONITORING PROGRAM: PART I: PROGRAM COORDINATOR’S MANUAL; PART II: TRAINERS’ MANUAL (1992). For materials adapted by the state for its AARP-initiated program, see ADMINISTRATIVE OFFICE OF THE COURTS, CIVIL PRACTICE DIVISION. NEW JERSEY GUARDIANSHIP MONITORING PROGRAM: COURT VISITORS TRAINING AND REFERENCE MANUAL AND COURT AUDITORS’ TRAINING & REFERENCE MANUAL (M. Perone ed. Fall 1998).0At the Illinois Guardianship Reform Project public hearings, remarks by the AARP representative expressing a willingness of the state organization to aid and support monitoring efforts were greeted with enthusiasm. Moreover, in some states, such as Washington, despite the fact that the national AARP organization no longer has guardianship as one of its priorities, AARP is still engaged in aiding with the volunteer program. Merry Kogut. Personal interview, July 26, 2000. 0 SPOKANE COUNTY SUPERIOR COURT. VOLUNTEER GUARDIANSHIP MONITORING PROGRAM: FEASIBILITY STUDY 8 (Feb. 2000). In Snohomish County, Washington, a retired judge is directing a monitoring project together with key volunteers, a psychiatric registered nurse, and a social worker. The first phase focused on recruitment of volunteers and getting computers and other equipment necessary for the program. In phase two, the group began analyzing guardian reports that had been received, finding a major problem in locating some wards, particularly those who had moved out of state. In those cases in which no reports had been submitted, letters were sent to the guardians. Often several court requests had to be made before any response was forthcoming from the guardian. Phase three, training and implementation of home visits, is expected to begin in January 2001. This is seen as a crucial element to allow monitors to evaluate whether what is

46

recommendations, among which were the need for “two part-time staff: a Volunteer Coordinator and Administrative Assistant as well as the utilization of staff from the Court Administrator’s office to provide Administrative Assistance.”0 The only formally structured volunteer monitoring program in Illinois is in Du Page County. Although this program has been coordinated by a volunteer, it still depends on the active participation of the judge who initiated it with AARP’s support and who continues to be actively involved to ensure the program’s success.0

Conclusion

In the recent three-part series about Michigan guardians in the DETROIT FREE PRESS, consequences of ineffective guardianship oversight were revealed in cases exposing examples of neglect and exploitation. The conclusion expressed by many was that “to truly improve [the] system, taxpayers must be willing to pay more to cover guardianship services and for state oversight.”0 This fits with the general pattern that, while most states statutorily provide for some type of continued court supervision after the appointment of a guardian, “in many instances, the content, submission, and court review of guardian reports was lacking, quantitatively as well as qualitatively.”0 Thus, in Illinois, although the statute designates the content of the reports, there is no mandate requiring guardians to file or courts to require any such report. Requiring such a report at least annually has the advantage of encouraging the guardian to continuously consider the practical implications of any status change in the ward, including whether there is any reason to change the scope of the guardianship order.

Moreover, despite general agreement regarding the need for some oversight, there is still a lack of good data to indicate what constitutes the most effective method of monitoring and what basic components must be present to ensure guardian accountability in caring for and protecting wards’ rights. This, then, argues for developing short-term pilot projects, where comparative costs and benefits of potential monitoring programs can be measured, leading to the development of a flexible system that is adaptive in counties of varying size and population and with different needs and resources.

being reported is accurate. Telephone interview with Judge Robert Bib (retired) (July 26, 2000). For more information on volunteer guardianship monitoring programs in other Washington counties, see Guardianship News (Wash. State Dep’t of Soc. & Health Servs.), available at www.wa.gov/dshs/aarp.0 Id. at 15.0 Materials relating to Du Page County’s volunteer monitoring program are available from the Circuit Court of the 18th Judicial Circuit, Judge Robert Byrne, presiding (Since Feb. 1, 2001, Judge Byrne has been a Justice of the Illinois Appellate Court, 2d Dist.) 0Wendy Wendland-Bowyer. Officials Push for Training and Laws to Improve Guardian System, DET. FREE PRESS, May 26, 2000. 0 See ABA, supra note 6, at 24.

47

Task Force Findings

1. Since it is difficult to predict the future course of some mental and physical conditions that cause decisional impairment and which may change over time, it is problematic that many courts do not receive an annual report concerning the status of the ward and his or her continued need for guardianship, particularly when there is no guardianship of the estate.

2. There is no system in place to ensure that the annual reports of a personal guardian provide the court with sufficient relevant information needed to monitor the functioning of the guardian or the continued need for guardianship.

3. Courts often lack the resources to effectively monitor the functioning of personal guardians or to review the ward’s current circumstances. Although the Office of State Guardian may assist a court at its request, in proceedings for the appointment of a guardian and in the supervision of persons and agencies which have been appointed as guardians (20 ILCS 3955/30), the State Guardian received no funding for this mandate and is able to provide the courts with little assistance.

4. Some jurisdictions, including Du Page County in Illinois, have used either volunteer or staff monitors to successfully improve the quality of guardianship services.

5. While a staff-based system of monitoring is considered best, it is recognized that the financial burden may require the use of volunteers as one tool for improving the monitoring system. However, to be effective, any monitoring system must be guided by a core of professionals.

48

6. Wards are often unable to initiate proceedings to determine whether guardianship is still needed, and often there is no one else with interest or resources to initiate such proceedings to modify or terminate a guardianship.

7. There is no efficient statewide system to disclose whether an individual has a guardian, who that guardian is, and what the scope of the guardianship order is.

Task Force Recommendations for Ensuring Guardianship Accountability

1. Personal guardians should develop an initial guardianship plan and submit it to the court within 60 days. This plan should be incorporated as a part of any guardianship monitoring system and should include a notice system for those failing to present plans within the required time period. See Appendix D, page 68, for model Initial Guardianship Plan and page 86 for related revision of 5/11a-17(c).

2. The personal guardian should be required to file with the court a report on the ward’s status no less than once a year and more frequently should the court so direct or if there has been a significant change in the ward’s condition. See page 86 for related revision to 5/11a-17(b).

3. A standardize Annual Guardian Report form, or one that is substantially compliant with this form, is recommended for use by the individual circuit courts. The information presented on this form should remain confidential but should be made available as a resource for evaluation by the court guardianship monitor.

See Appendix E, page 70, for model Annual Report of Guardian form.

4. An independent nonprofit organization should seek funding for a three-year demonstration project or projects for a statewide monitoring system. That pilot project should test the need for and efficacy, cost, and feasibility of a statewide monitoring system that incorporates the following:

49

Computer or tickler systems to inform each court when a guardian’s guardianship plan, personal status reports, and accountings are late and to notify the guardian that the report is delinquent.

Staff to review monitor reports whose responsibilities should include coordinating recruiting, training, and supervising volunteer monitors; reviewing monitoring reports; conducting independent investigations whenever the reports of the volunteers indicate the necessity of doing so; and reporting to the courts.

A sampling system for annually monitoring guardianships combined with a notice procedure about problem cases. Monitors will be responsible for verifying the contents of the guardian’s report, visiting the ward to observe the ward’s personal condition, and reporting to the court on a Court Monitor Report form about the guardianship, including any changes in circumstances relevant to the guardianship order, actions taken by the guardian during the reporting period, any significant changes in the decisional impairment of the individual; services being provided to the ward, and the reasons the guardianship should be terminated or why no less restrictive alternative would suffice. See Appendix F, page 73 for model Court Monitor Report Form

Training programs for court monitors Linkages with other relevant statewide programs such as the Illinois Guardianship

and Advocacy Commission, the Illinois Department of Aging’s Ombudsman Program and the Illinois Department of Human Services’ Office of Inspector General, with county public guardians, and with guardianship organizations, such as the National Guardianship Association and the Illinois Guardianship Association.

5. The Office of State Guardian of the Illinois Guardianship and Advocacy Commission should be provided with funds to create a statewide guardianship registry that lists the guardianship under the name of both the ward and the guardian and includes, among other information, the scope of the guardianship.

6. 755 ILL. COMP. STAT. 5/11A-20 (b) should be revised to allow a court-appointed monitor to recommend to the court that a guardianship be terminated or modified.

See p. 87.

50

Chapter 4Training and Support: Ensuring the Success of Guardians

Commentary

There is no training for individuals appointed as guardiansand far too little accountability. Guardianship is an enormousresponsibility, and I think we owe it to those family membersand friends who are willing to take it on, and to do it with care, at least some orientation as to their duties and legal responsibilities.0

I think a booklet...[would be useful] written in plain languagefor lay people[who] could be fully informed about what guardianship is, how to obtain it, what some of the provisions are in a [court]order…so they know what they’re undertaking,what they should be looking for.0

There needs to be a class on guardianship, like what is donefor traffic school.0

The duties of guardians are broad, complex, and sometimes confusing to those who may be highly dedicated to meeting their responsibilities to their wards. Yet, as noted in the above comments, despite the obvious need, there is, at present, a lack of “training, orientation, and ongoing support of guardians…quantitatively as well as qualitatively.”0 Here, training includes information about what services are available for different types of disabilities, what and how reports should be filed, and what legal requirements must be met. Such information has implications both for monitoring and training. For example, in terms of both initial guardianship plans and subsequent annual reports, these provide a mainstay of any effective monitoring system by encouraging the guardian to develop a blueprint for care and services that can be a point of reference for courts, which can then provide guidance to the guardians when necessary. It is for this reason, to ensure both the quality of these reports and adequate care of the ward, that “courts need to educate the guardians in the use of defined guardian performance standards and written individual guardianship plans.”0

Prospective guardians, of course, have different needs. Many come into the role without any experience whatsoever, lacking information about how to access available community

0 Public hearing testimony. See infra p.132. Similar comments about the need for training of guardians appear in VIRGINIA GUARDIANSHIP TASK FORCE. VIRGINIA VOICES ON GUARDIANSHIP AND ALTERNATIVES 10-11 (1993).0 Comment in Focus Group. See infra p. 102.0 See infra p.104.0 ABA COMM. ON LEGAL PROBLEMS OF THE ELDERLY: AN AGENDA FOR REFORM 23 (1989) [hereinafter ABA]. 0 Norman Fell, Guardianship and the Elderly: Oversight not Overlooked, 25 TOL. L. REV. 189, 204 (1994).

51

support services and how to resolve any problems that may occur with those services in properly caring for their wards. On the other hand, others may have been actively involved in their ward’s life prior to appointment and lack only experience with this formal legal role of guardian. Even for these individuals, many of whom are parents who have been caring for their children with disabilities for some time, it is important to clarify the changes in their role and legal responsibilities once they become a guardian of an adult child. While no training can take the place of the skills they acquired, the transition of the child to adult status imparts rights that cannot be ignored, often requiring a shift in attitude for the anxious parent who is now caring for an adult with rights of self-determination.

There are various measures described to guarantee that guardians have the guidance for meeting their legal responsibilities. The first, noted in the NATIONAL PROBATE COURT STANDARDS,0 is found in a well-constructed court order. This order should clearly delineate the particular powers and duties of the guardian with regard to the ward’s care and comfort, including shelter, health, and educational services necessary to achieve the greatest amount of self-determination, and when possible, even the eventual restoration of rights.

A second measure is to provide opportunities for training so that, after receiving a court order designating them as guardians, individuals understand what is expected of them and how they can manage what may seem like contradictory responsibilities to care for the ward and yet enhance the ward’s independence when possible. In the focus groups and public hearings conducted for the Illinois Guardianship Reform Project, as well as in discussions with family members and professionals in Illinois and other states, many guardians reported that they were not aware of all that they should do for their wards once appointed guardians. In fact, “my lack of training” has become one of the most recognizable mantras representing stresses faced by guardians in fulfilling their role.0 While some judges can and do provide information to appointed guardians, courts currently have limited time and resources to conduct adequate training. Consequently, recognizing the critical value of such training, the American Bar Association recommended increased support for guardian training through statewide development and distribution of model training and orientation handbooks and videos.0

Encouraging Effective Training

There is a scarcity of formal training for private guardians, even though it is strongly recommended by professionals and associations like the National Guardianship Association.0 Emphasizing that legal guardianship represents a unique status with specific requirements, the American Bar Association recommended mandatory training. Nonetheless, as in the case of monitoring, flexible methodologies and time schedules should be available so that such a requirement will not become an obstacle to family

0 COMM. ON NAT’L PROBATE CT. STANDARDS, NAT’L COLLEGE OF PROB. JUDGES & NAT’L CENTER FOR STATE CTS., NAT’L PROB. CT. STANDARDS (1993). 0 PAT KEITH & ROBBYN WACKER, OLDER WARDS AND THEIR GUARDIANS 107 (1994) [hereinafter KEITH]. 0 See ABA, supra 4, at 23.0 Over 90% of the staff of the Illinois Office of State Guardian are registered guardians under the certification program administered by the National Guardianship Foundation, in concert with the National Guardianship Association. The NGA has continually updated and revised the manual STUDY GUIDE FOR REGISTERED GUARDIANSHIP CERTIFICATION (1996). In addition, the NGA publishes a MODEL CODE OF ETHICS FOR GUARDIANS and a STANDARDS OF PRACTICE FOR GUARDIANS.

52

members becoming guardians. Hence, as a way to assure that training can become a key component of any guardianship system, initial guardianship plans and annual report forms should be field-tested so that they are minimally burdensome and sufficiently informative to guide both the guardian and court in evaluation of the ward.0 Given the need for training, the next issue becomes deciding its content and

methodology. In addition to specific types of information (e.g. services available, legal responsibilities, how to fill out forms), it is important to confront the equally important issue of emotional challenges facing guardians in carrying out their duties. For family members in particular, the most difficult tasks identified by the majority of guardians in one study found five general themes: “(1) observation of the deterioration of the ward; (2) management of the guardianship; (3) pressures of decision-making; (4) time constraints; and (5) contentious family relationships.”0

In general, the strain from making decisions on behalf of the ward was presented as the greatest difficulty by almost 20 percent of one study’s guardian respondents.0 This is understandable given the fact that one is expected in acting for the ward to balance what may sometimes be clashing aims to determine “what is best for the ward as well as what they would do if they could make the decision.”0 Here, as noted in the Illinois statute, there is the challenge of trying to seek what is best for the ward in promoting his well-being, “to protect him from neglect, exploitation, or abuse”0 yet to do so within the parameters of the standard of substituted judgment: “[w]here possible, the guardian shall determine how the ward would have made a decision based on the ward’s previously expressed preferences, and make decisions in accordance with the preferences of the ward.”0 Therefore, the pillars of any training program must be not only to supply specific information about resources and regulations but, equally important, to provide practical direction for surmounting difficulties in encouraging “the development of maximum self-reliance and independence”0 and for overcoming the emotional and psychological problems faced in actualizing the substituted judgment standard.

To build a training program that includes both information and practical techniques, there is a range of methodological choices that can be made, depending on the availability of and willingness to expend resources, both financial and personnel. Among the most extensive training is in the state of Florida, which has statutorily mandated “8 hours of instruction and education within 1 year after…appointment as

0 Phillip Tor &Bruce Sales, A Social Science Perspective on the Law of Guardianship: Directions for Improving the Process and Practice, 18 LAW AND PSYCHOL. REV.35 (1994).0 See KEITH, supra note 7, at 103.0 Id. at 107.0 Id. at 108.0 755 Ill. Comp. Stat. 5/11a-3(b)(2000).0 755 Ill. Comp. Stat. 5/11a-17(e)(2000).0 755 Ill. Comp. Stat. 5/11a-17(a)(2000).

53

guardian.”0 Other states have created videos and manuals for use by guardians.0 Because attitudes about disability and aging can be tackled most effectively in a personal setting, some amount of hands-on training is optimal, but this may not be possible in every jurisdiction. However, at a minimum, every new guardian should be required to view a video and read handbooks prepared by the court. Nonetheless, even here, some caution may be necessary. While several states have developed extensive manuals and some have used videos for training, no evaluation of their actual use or effectiveness is available. This leads some to speculate that, at least in the case of videos, the impact is minimal, since most use is nondirected.0

ConclusionSince Illinois has no mechanism in place to formally train guardians,0 the ultimate

challenge for any method is to prepare guardians to meet their obligations to care for their wards while seeking ways to enhance their wards’ independence whenever possible. A well-conceived training program could go a long way toward surmounting the disappointment often expressed by experts in the field that “reforms have not noticeably changed the climate of values that drive the guardianship system…[changes that could assist] individuals with reduced capacity to retain control of their lives.”0

0 Fla. Stat. Para. 744.3145(3)(2000). Here, “the instruction and education must be completed through a course approved by the chief judge of the circuit court and taught by a court-approved organization.” Material available from various organizations, such as Broward Community College, which has been certified by the court to teach courses. For other training materials, see also ARC MINNESOTA AND THE PUBLIC GUARDIANSHIP OFFICE, CONSERVATORSHIP AND GUARDIANSHIP IN MINNESOTA (1990). For Illinois lawyers a quick guide is available in disc and hard copy: ILLINOIS INSTITUTE FOR CONTINUING LEGAL EDUCATION: HOW TO HANDLE GUARDIANSHIP PROCEEDINGS FOR A DISABLED ADULT (Elizabeth Anderson and James Moses eds., 1999). Other materials have been developed for training by the Chicago Bar Association and the National Guardianship Association.0 Among the states that have developed videos for view by guardians are Alaska, Arizona, California, Michigan, and Texas. 0 Telephone interview with Winsor Schmidt, Prof. Of Health Policy and Administration., Washington State University (March 3, 2000). 0 Some judges do distribute one to two pages summarizing guardians’ responsibilities. 0Lawrence Frolik, Guardianship Reform: When the Best Is the Enemy of the Good, 9 STAN. L. AND POL’Y REV. 347 (1998).

54

Task Force Findings

1. Many individual guardians have limited experience and knowledge of the law governing guardianship or resources that may be available to assist them in caring for their wards.

2. Although training and certification is available for professional guardians through the National Guardianship Association, training is often not available to guardians and prospective guardians who are family members or friends of the ward.

3. Many individual guardians do not have the financial resources to retain an attorney or to seek assistance from an attorney once the guardianship has been established.

4. Ongoing technical support, e.g. information and referral, is frequently not available to individual guardians.

5. Many jurisdictions have found that providing orientation, training, and ongoing assistance to individual guardians is helpful to them in discharging their obligations.

6. The Office of State Guardian’s statewide telephone information service, which provides guidance and advice about guardianship issues to persons who request assistance, lacks sufficient funding and is not widely known by those who could benefit from the service.

55

Task Force Recommendations for Ensuring the Success of Guardians

1. A manual that outlines the duties and responsibilities of the guardian should be disseminated to the prospective guardian when the guardianship petition is filed. This manual should also be made available on the Office of State Guardian’s website. Contents should include all forms a guardian is required to complete, with instructions for completion, as well as a list of alternatives to guardianship.

2. All newly appointed guardians should be encouraged to take a training and orientation course with the court having the power to mandate such training when it is deemed necessary. With the cooperation of the Illinois and National Guardian Associations and appropriate state, county, and community agencies, funds should be acquired to develop a common course adaptable throughout Illinois. This course should focus on learning the key values, norms, and information necessary to guide the guardian in his surrogate decision-making. See page 86 for related revision of 5/11a-17(b).

3. Additional funding should be provided to the Office of State Guardian:

a. to expand, improve, and publicize its statewide information system and to create a statewide toll-free number that provides information and advice to guardians in accordance with the Commission’s mandate under Section 33 of the Guardianship and Advocacy Act;

b. to publish and distribute brochures and other information materials about guardians’ legal responsibilities and community resources available to guardians and their wards; and

c. to augment its website with information about those community services available to meet the health, social, and educational needs of individuals with disabilities and with information to guardians about changes in law related to guardianship.

56

Chapter 5Public and Private Guardianship Service Programs: Ensuring a

Sufficiency of Guardians

Commentary

Although we have always found them [the Office of State Guardian]to be very cooperative and helpful, we are also aware that theyare short-staffed and underfunded.0

[There] is a need for evaluation of the public guardian systemto determine its effectiveness in meeting the increasing demand for public guardians…Not all of our counties even have a publicguardian appointed. Those that do are sometimes ill-equippedto handle the complexities of cases we encounter.0

The state should sponsor ongoing programs to recruit, screen,train, and support qualified individuals who would volunteeras guardians for people who had no one else.0

The problem of unmet need for guardianship services will be exacerbated in the coming century by the aging of the American population.0 Even those in states with elaborate public guardianship systems complain that they are stretched to the limits of their capacity to serve as effective guardians due to insufficient funding. The result is an ongoing effort to find ways to fill the gap between supply and demand for guardians. Guardianship service programs that have been developed to meet this need can be divided into three main categories: public, volunteer, and corporate.0 Most states provide some level of each of these three categories.

Public Guardianship

Public guardianship may be defined as “a guardianship, conservatorship, and/or representative payeeship service that is provided by individuals who are employees of a governmental unit, such as a city, township, county, state, or probate court.”0 Professor Winsor 0App. I: Public Hearings testimony, infra p. 134.0 Id. 0 Id. at 141. 0Telephone interview with Prof. Winsor Schmidt, (March 3, 2000). This confirms his earlier case studies in which he found “a population of unspecified size in need of guardianship services.” Winsor Schmidt, Summary and Discussion of Major Findings from a National Study of Public Guardianship and the Elderly, in GUARDIANSHIP: THE COURT OF LAST RESORT FOR THE ELDERLY AND DISABLED 73 (Winsor Schmidt ed., 1995). The refrain about lack of resources or limitations in public guardianship systems is repeated throughout the literature.0 THE CENTER FOR SOCIAL GERONTOLOGY. GUIDELINES FOR GUARDIANSHIP SERVICE PROGRAMS (1987) [hereinafter CTR. FOR SOCIAL GERONTOLOGY].0 Id. at 3.

57

Schmidt, one of the leading experts on public guardianship, suggests that the public system may be seen primarily as filling the need when no private guardian is available:

The reasons for there being no private guardian include such situations as those where there are no willing and responsible family members or friends to serve as guardian; and where there is insufficient money in the estate, or noblesse oblige in the prospective guardian, to attract private attorneys, or banks, or other entities into guardianship service. A public guardian, then may be conceptualized as the product of a failure in the private sector or market. Specifically, a publicguardian is an agent of the government which has enteredthe guardianship market in response to a real or supposed demand and absence of supply.0

In a survey taken in 1993, it was found that more than 40 states had some type of public system,0 although only a few could be said to have as extensive a system as that in Illinois with both an independent state public guardianship agency (Office of State Guardian) and a county-based Office of Public Guardian system.0 Moreover, confirming the findings of an earlier study that found public guardian offices “understaffed and underfunded…approaching the saturation point in number of wards,”0 many working in public guardianship systems complain of being stretched beyond the limits of their capacity to serve as effective guardians.

This burden exists in Illinois, where figures from the Office of State Guardian (OSG) indicate a client/caseworker ratio of approximately 138:1 for personal guardians,0 far above the recommended level for guaranteeing adequate care suggested by the National Guardianship Association and other experts.0 To relieve this burden, the Office of State Guardian has submitted estimates necessary to improve the client/caseworker ratio.0 Besides assuring that 0 Schmidt et al., Issues in Public Guardianship, in Schmidt, supra note 4, at 53.0 One 1993 survey distinguished between systems based on “explicit” and “implicit” statutory provisions. Here models include: independent state public guardianship agency (7 states); public guardian office established with a preexisting social service agency at state or county level (12 states); private sector contracted with by county or state (12 states); public employees serving as public guardians but not providing social services (12 states); none or other (8 states). Siemon et al., Public Guardianship: Where Is It and What Does It Need?, CLEARINGHOUSE REV. 588 (1993).0 The Office of State Guardian serves as guardian for estates of less than $25,000, while county public guardians serve those with more than $25,000. 755 LL. COMP. STAT. 5/13-5 (2000). For statute pertaining to Office of State Guardian, see Guardianship and Advocacy Act, 20 ILL. COMP. STAT. 3955/1-36(2000); for that pertaining to public guardians, see 755 ILL. COMP. STAT. 5/13 seq. (2000).0 Schmidt, supra note 4, at 73. 0 Figures for each county public guardian are not readily available; however, the estimate given for Cook County’s staff was approximately 40:1. 0 Prof. Schmidt recommends the ideal of 30:1 if public guardianship system is to be effective and not to be so understaffed as to do more harm than good. Schmidt, Public Guardianship Issues for New York: Insights from Research, 6/3 ELDER L. ATT’Y (N.Y. State Bar Ass’n) 31, 36 (1996).0 Memorandum on file with author. The estimate given of what resources would be necessary to decrease this caseload to 80:1, was an increase of approximately 30 additional representatives (handling personal guardianships), 4 additional regional administrators, 8 lawyers, and 8 additional clerical workers. This would allow quarterly meetings as well as additional time to attend care plan conferences and interdisciplinary team meetings, and to

58

obligations to wards are being met, these additional staff members are necessary for the Office of State Guardian to respond to requests by private guardians for help in filling out forms. This is a current statutory requirement that could significantly improve the quality of private guardian annual reports and initial care plans, if properly implemented.0

Volunteer Guardianship Programs

A volunteer guardianship service program is defined as one “in which guardianship, conservatorship, and/or representative payeeship services are provided by individual volunteers who are recruited, trained, and supervised by paid staff. The individual volunteers are named on orders appointing them…and assume ultimate responsibility for the ward or beneficiary.”0 In the current environment of competition for limited public funding, some caution should be noted about the tendency to view volunteers as providing the most cost-effective means for guardianship. First, as noted in the latest report of the Texas Guardianship Advisory Board, almost all guardianship programs, including those using primarily volunteers and those using solely paid staff, have found that “a paid full-time director is a necessity.”0

While recognizing the “altruism, energy, caring, and humanity” exhibited by the most active volunteers in one pilot program, there is the warning that “the volunteer panacea should be sharply questioned. Volunteers must be recruited, trained, professionally supported, monitored, and replaced. All of this activity is at the opportunity cost of the direct client services that recruiters, trainers, professionals, and monitors could be performing instead.”0 Here, a close look at Kansas’ extensive volunteer system can be useful in identifying features of any successful volunteer program.

The Kansas Guardianship Program (KGP) was initiated in 1979 under the administration of Kansas Protection and Advocacy Services, Inc. In 1995, the Kansas Legislature established the program as a separate public instrumentality, governed by a seven-member board of directors, six of whom are appointed by the Governor and one by the Chief Justice.0 The KGP’s

key responsibilities are to1. recruit capable volunteers; 2. match the volunteer with the proposed ward; 3. contract with the appointed volunteer after appointment; 4. require monthly reports of activities;

address unmet placement, habilitative, and medical needs. To lower the caseload to an optimum 40:1, allowing for regular monthly or as-needed visits, approximately 108 additional representatives, 13 additional regional administrators, 16 additional lawyers, and 16 additional clerical workers would be needed. Note: Although these are to be considered only as first estimates, the figures do provide a sense of resources needed in order to bring the caseload down to satisfactory professional levels. Id. 0 “The Office of the State Guardian shall assist the guardian in filing the report when requested by the guardian.” 755 ILL. COMP. STAT. 5/11a-17(b) (2000).0 CTR. FOR SOCIAL GERONTOLOGY, supra note 5, at 3.0 Steven Fields, How to Start a Local Guardianship Program, in TEXAS GUARDIANSHIP ADVISORY BOARD. A REPORT TO THE GOVERNOR AND THE 76TH LEGISLATURE ON GUARDIANSHIP ISSUES, app. E, at 5 (1999).0 Winsor Schmidt et al., A Descriptive Analysis of Professional and Volunteer Programs for the Delivery of Public Guardianship Services, in Schmidt, supra note 4, at 176.0 KAN. STA. ANN. § 74-9601 et. seq., (2000).

59

5. provide a small monthly reimbursement stipend to volunteer guardians; and6. conduct ongoing formal and informal training for guardians in order to enhance

service provided to the ward.0

The KGP is involved “in most of the 105 counties in Kansas; to recruit volunteers, contact is made with community leaders to identify persons who would either consider volunteering or who might generate specific names of potential volunteers. Additionally, contacts are made with churches and civic groups as well as current providers of supports and services for persons with developmental disabilities, mental illness or aging disabilities.”0 Recognizing that being a good guardian is time- consuming, 75 percent of volunteers serve only one to two persons (volunteers may have up to five wards, but this usually occurs when individuals are in an institutional setting).0

In 1999, the KGP served approximately 1,700 persons, with 900 individuals serving as guardians/conservators during that period.0 The KGP’s Executive Director has noted that the program is dependent on the following for its continued growth and success: an ongoing funding base; sufficient staff to recruit, train, and maintain a core of volunteers;0 and clearly defined standards of operation to guide staff and volunteers alike.0

In southern Illinois, a two-year volunteer guardian project was conducted in the late 1980s. Funded by the Retirement Research Foundation, the project trained lay persons in Jackson and Perry counties and then matched these individuals to elderly persons with disabilities who required assistance. “In some cases the volunteer was appointed a representative payee by the Social Security Administration; in other cases the trained volunteer assisted the disabled person on an informal basis; while in other cases the volunteer was appointed guardian under the Illinois Probate Act. The project then monitored the activity of the volunteer and assured that all legal requirements were met and that the volunteer was provided continuing assistance as problems arose.”0 Training of volunteers was conducted by representatives from the Office of State Guardian and Southern Illinois University’s Legal Clinic and medical school.

0 KANSAS GUARDIANSHIP PROGRAM, PROGRAM OPERATIONS AND PROCEDURES 5 (Nov. 1999). KGP also works closely with the state’s Social and Rehabilitation Services (SRS), which identifies individuals who may be in need of a guardian and/or conservator, or voluntary conservator, determining first that no appropriate family member is available and the prospective ward meets financial eligibility guidelines established by SRS in order to participate in the program.0 Telephone interview with Jean Krahn, Executive Director of Kansas Guardianship Program. 0 Id. It was noted that volunteers tend to remain longer when the strain is minimized through focus on only one or two wards. 0 KANSAS GUARDIANSHIP PROGRAM PLAN FOR FY 2000. The total budget request for FY 2000 is $1.1 million, about 43% of which is for salaries, the rest for other administrative costs, such as guardian stipends (43%); rent (5%); communication (4%). Id.0 See KANSAS GUARDIANSHIP PROGRAM HANDBOOK (1997). This is a volume prepared for volunteers recruited and trained and who contract to serve as guardians with the KGP.0 For description of two other volunteer guardian systems, see Colleen Colton et al., The Use of Volunteer Guardians in Texas and Wyoming: A Viable Alternative, Presentation at National Guardianship Association Conference (Oct. 11,1999).0 VOLUNTEER GUARDIANSHIP PROJECT RETIREMENT RESEARCH FOUNDATION, ILL. GUARDIANSHIP MANUAL (1991). This volume was written as a compilation of materials to be used by a lay person appointed guardian and other individuals faced with how best to protect the interests of an adult not able to completely manage decision-making.

60

The project is currently dormant, primarily due to a lack of staff for training and recruitment. Although it has ceased to develop further, individuals who were trained as volunteer guardians during this period still act as guardians and are sometimes represented by the SIU Legal Services to Older Persons’ program.0 The need for volunteers to make up for the deficiency in guardians continues in other Illinois counties, where proposals for pilot projects to support such efforts have been forthcoming.0 Nonetheless, the success of volunteer programs will depend on adequate funding to ensure a sufficient number of qualified staff for continued support and monitoring of volunteers’ activities, in order to avoid potential for abuse.0

Corporate Guardianship Programs

A corporate guardianship program0 is one in which guardianship or representative payeeship is provided by either a for-profit or not-for-profit corporation, whose services are provided primarily by professional, paid staff.0 In a three-part series on Michigan guardians in the DETROIT FREE PRESS in May 2000,0 it was noted that guardianship has become a growing industry in which no one “knows how many professional guardians there are. Probate courts do not know guardians’ caseloads. No one requires guardians to visit their wards. No one routinely audits the financial reports they submit.”0 The result of this lack of regulation was viewed as being central to many of the Michigan guardianship system’s failure to protect wards from neglect and exploitation. This is particularly evident in excessively high caseloads that have resulted in wards being visited no more than once a year by their guardian.0

Exposes such as the one in Michigan have led several states to respond to unregulated guardianship industry growth by adopting standards for certification and proposing disciplinary

0 Telephone interview, Prof. John Erbes, Southern Ill. U. Law School.0 The Volunteer Guardianship Comm., The Volunteer Companion & Guardianship Project: A Proposal to the South Suburban Network Advisory Committee (Oct. 5, 1999). 0 Teaster et.al., Staff Service and Volunteer Staff Service Models for Public Guardian and ‘Alternatives’ Services: Who Is Served and With What Outcomes?, 5/2 J. OF ETHICS, L. & AGING 148 (1999).0 The problems with corporate guardians that are discussed in this section, as well as many other problems, are supported in the draft of a forthcoming report from the Center for Social Gerontology, based on a year-long in-depth investigation of corporate and non-family private guardians in three states: Michigan, Florida, and Washington. Among problems raised are high caseload; insufficient training; failure to consider alternatives and to petition for restoration of rights when possible; unnecessary appointment of guardians; failure to appoint available and appropriate family members; insufficient contact with wards; inadequate annual reports; primacy of financial management over provision of personal care; excessive fees. THE CENTER FOR SOCIAL GERONTOLOGY. FINAL REPORT ON AN IN-DEPTH INVESTIGATION OF THREE STATES OF THE CENTER FOR SOCIAL GERONTOLOGY’S NATIONAL GUARDIANSHIP SERVICE PROVIDER STUDY (draft) (forthcoming 2001).0 CTR. FOR SOC. GERONTOLOGY, supra note 5, at 4. 0 Wendy Wendland-Bowyer, Official push for training and laws to improve guardian system, DET. FREE PRESS, May 26, 2000.0 Wendy Wendland-Bowyer, Who’s Watching the Guardians?, DET. FREE PRESS, May 24, 2000.0 See Wendland-Bowyer, supra note 31. One Michigan guardianship agency with several full-time staff members, has only one person making visits. The result is that its 600 wards receive about one visit per year, a problem that one bill seeks to alleviate by requiring guardians to visit wards once a month and carry a caseload of one worker per 25 clients. The gravity of issues raised in this expose combined with a previous scandal resulting in the imprisonment of owners of a private guardianship agency (see Wendy Wendland-Bowyer, Jail Time, Fines for Guardian Officials, DET. FREE PRESS, Dec. 6, 1999) has led to the Michigan Supreme Court’s appointment of a Federal judge to serve as Guardianship Ombudsman to oversee reform of guardianship practice in Michigan.

61

regulations for guardians.0 There has not been a proliferation of professional guardianship agencies in Illinois to the same extent as those states without large-scale public guardianship systems. Nonetheless, because of the projected increase in the need for guardians and the fact that failure to properly perform one’s duty can be devastating to individuals requiring a guardian’s protection and care, there is also a concern to raise the standards of guardianship practice in Illinois. This is being accomplished through the training and certification programs developed under the rubric of the Illinois Guardianship Association, an affiliate of the National Guardianship Association.

The National Guardianship Association (NGA) was created in February 1988 as a non-profit national organization composed of individuals and organizations throughout the United States, Canada, and Australia. It includes guardians, physicians, attorneys, social workers, bankers, and public and private agencies and organizations. The NGA’s mission is “to provide education, training, and networking opportunities for guardians and about guardianship; to promote the highest levels of values, standards, and ethics; and to ensure a nationally recognized standard of excellence.”0 To satisfy this mission, the NGA holds annual conferences, publishes a newsletter for its members (NATIONAL GUARDIAN), has developed training and certification programs for guardians,0 and has produced, among its other materials, a Model Code of Ethics for Guardians0 and a volume of standards of practice for guardians.0 The work toward certification is seen to be one important way to improve standards by which guardians take care of their wards.0

There are dilemmas with professional guardianship that must be addressed in establishing any regulatory regime:0 The first, which also pertains to public guardianship systems, is that limited familiarity with the ward can sometimes undermine the guardian’s goal to base his decisions on an understanding of how the ward might act if he or she were able to do so. Second, there is the problem of the essential goal of private agencies to remain in business. This bottom-line imperative may come into conflict with the principal endeavor of a guardian, which is to try to make himself redundant by striving to improve the ward’s condition so that his or her rights may be restored. Moreover, because limited guardianships often require more work than plenary ones, there are few economic incentives to create more limited guardianships. Thus, the unintentional result could be that creating a regulatory system leads to even further growth of a private guardianship industry, which in turn could hinder attempts to decrease guardianships through the use of less restrictive alternatives.

0 Two states that require some training of guardians are Arizona and Washington. The latter has promulgated GR 23, a new rule for certifying professional guardians and has drafted proposed disciplinary regulations for guardians. W97 Disciplinary Regulations 8-19.0 National Guardianship Ass’n.: The Leading Authority on Excellence in Guardianship (brochure). 0 NATIONAL GUARDIANSHIP ASS’N, STUDY GUIDE FOR REGISTERED CERTIFICATION (1996); NAT’L GUARDIANSHIP ASS’N. BASIC TRAINING MANUAL FOR BEGINNING GUARDIANS. 0 MICHAEL CASASANTO ET AL., A MODEL CODE OF ETHICS FOR GUARDIANS (adopted by the National Guardianship Assn. 1988). 0 NAT’L GUARDIANSHIP ASS’N. STANDARDS FOR GUARDIANS (1999)(recently revised as STANDARDS OF PRACTICE, (2000)).0 As a result of the DET. FREE PRESS series noted previously, one Detroit judge issued a press release stating that beginning November 1, 2000, all guardians in his jurisdiction will have to be registered guardians, under the terms of the program offered by the National Guardianship Association/ National Guardianship Foundation. 0 Telephone interview with Penny Hommel, Exec. Dir., The Center for Social Gerontology, Ann Arbor, MI.

62

The solution to this problem, however, is complicated. Some have recommended, like The Center for Social Gerontology in its soon-to-be released study, that agencies serving as guardians, whether public or private, should also provide a range of alternative services, thus assuring that there will be no economic disincentive either to restore rights or limit guardianship orders whenever appropriate.0 The Cathedral Foundation of Jacksonville, Florida, provides one example of how such a dual role can create an environment in which a protective services agency becomes a guardian only as a last resort. Asserting the goal to intervene as little as possible in clients’ lives, the Cathedral Foundation first tries such alternative means as assistance with daily money management and creating advance directives. Often serving as representative payee will suffice for substitute decision-making. 0

Conclusion

There has been a national chorus crying out for more resources to meet the growing need for guardians throughout the United States. At the same time, there is a general recognition to be mindful that caring for individuals with decisional impairments by increasing the supply of guardians--whether within a public, volunteer, or corporate system--should be accomplished within the framework of achieving the desired target to eliminate or limit the scope of guardianships whenever possible. It is for this reason that crafting professional and ethical standards for guardians and developing a system of training and certification have been viewed by the National Guardianship Association and some state legislatures as vital steps toward ensuring a pool of qualified individuals to achieve the main objectives of guardianship: to protect while encouraging self-determination.

Task Force Findings

1. The need for guardians will grow in the coming decades as the population ages.

0 CTR. FOR SOCIAL GERONTOLOGY, supra note 29. The ABA’s Wingspread conferees took a contrary position on this dual guardian/service provider role, warning that guardianship agencies with dual roles could create a conflict of interest, which might “interfere with a guardian’s proper role to challenge service provider agencies that are not providing proper services.” See ABA COMM. ON LEGAL PROBLEMS OF THE ELDERLY. GUARDIANSHIP: AN AGENDA FOR REFORM 30 (1989). A solution to these differing viewpoints regarding the dual role of agencies may be to encourage such agencies to have varied services but to prohibit them from simultaneously serving the same ward as both guardian and service provider. 0 The Executive Director at Cathedral Foundation has noted that if advance directives and representative payeeship are in place, there is often little need to secure a guardianship. Funded in part by Title IIIB funds of the Older Americans Act, one key to the Cathedral Foundation’s success is the support and trust it engenders from members of the local financial, medical, and legal communities. Schmidt notes that without the Cathedral Foundation’s resistance to inappropriate guardianship, there is a potential problem in its active involvement in the initiation of guardianships. This is a conflict of interest that could in private agencies lead to self-aggrandizement. Winsor Schmidt et al., Alternatives to Public Guardianship, in Schmidt, supra note 4, at 84-85.

63

2. There are an insufficient number of individuals willing to meet the need for guardians in Illinois.

3. The Office of State Guardian’s present caseload average of 138:1 prevents it from meeting the National Guardianship Association’s recommendation of monthly visits to each ward in order to assure proper care and oversight.

4. Many service providers and members of the public outside of Cook County do not know who the public guardian is in their county.

5. There is a need for additional support for efforts to protect individuals with disabilities from financial exploitation, abuse, and neglect.

6. Volunteer guardian programs are useful in meeting the growing need for guardians when combined with and coordinated by a core of professional staff.

7. There is no procedure in Illinois to certify private professional guardians or to regulate the work of private guardianship agencies.

8. Illinois has no disciplinary regulations, including recommended sanctions and remedies, when a guardian has failed to meet his professional responsibilities.

Task Force Recommendations for Ensuring a Sufficiency of Guardians

64

1. Funds should be provided to the Office of State Guardian to hire additional caseworkers and other support staff. See Memorandum, supra note 13, at 46 for staffing estimates.

2. Each county in Illinois should publicize the name and address of its public guardian, along with information about the public guardian’s range of responsibilities. The Office of the Governor should maintain a publicly available list of public guardians’ names, professional credentials, qualifications, phone numbers, and addresses.

3. The state should support and coordinate efforts for exposing and resolving financial exploitation cases and incidents where individuals with disabilities are victims of abuse or neglect. The Cook County Public Guardian, working in concert with local law enforcement agencies, the Chicago and Suburban Areas on Aging, FLAG (Financial, Law Enforcement and other Government Agencies), the courts, and other interested parties, should assist other county public guardians with creating programs modeled after the FLAG Program in Cook County, with funding supplied by the state.

4. A committee comprised of members of the Guardianship Reform Project’s Task Force and Senior Review Board, together with representatives from other relevant associations and organizations in Illinois, should: a) develop model standards for the certification of professional guardians in Illinois; b) create a system for regulating the activities of private agencies or individuals engaged in guardianship services, including standards and means for disciplining guardians; and c) implement a volunteer guardian pilot project to evaluate the viability of using volunteers to meet the growing need for guardians in Illinois.

65

Chapter 6Public Education and Professional Training:

Ensuring the Success of Guardianship Reform

Commentary

Public education is a vital component to betterguardianship…I encounter public misinformationall the time. If we can have infomercials on othersubjects why not one on guardianship? Let’s utilizethe media better to reach the average citizen.0

To build a solid foundation for any successful implementation of reforms, it is imperative to provide for the effective education of the public and continuous training of professionals who have critical roles in the guardianship process. One such example of the recognition of this dual requirement for public and professional training is found in the comprehensive effort in Washtenaw County, Michigan, where a program was funded to create the position of probate counsel to serve as a guide for both laymen and professionals engaged in the guardianship system. There, probate counsel’s chief responsibility is to carefully screen petitions and to strive to divert any inappropriate guardianship cases by guiding petitioners’ to alternative community resources.0 In addition, he directs the training of attorneys, guardians ad litem, and guardians so that they can fulfill their roles more effectively.0

While having a probate counsel as gatekeeper may be a luxury for many jurisdictions, there should be some means to ensure public awareness of relevant statutes and their implications. Public education is essential to prevent inappropriate guardianships, since studies have indicated that once petitions reach the courts, there is only a negligible chance that any will be rejected.0 Moreover, an information campaign can raise public consciousness about significant issues on aging and disability, such as facts about technological advances that enable individuals with disabilities to live independently as never before. This will not only provide crucial support for the passage of proposed legislation but will also provide a foundation for its successful implementation, since “[p]erhaps no amount of statutory reform can alter the tendency for attitudes toward aging to overshadow and shape the interpretation and implementation of legislation.”0 Finally, public education campaigns can serve to guide future guardians in meeting their responsibilities. Equally important is to increase the impetus in the

0 Testimony by service provider at public hearing, infra p. 133.0 This position is consistent with the ABA recommendation that screening mechanisms, “if properly established, would save considerably more money in the long run and would improve the overall quality of guardianship dispositions.” Id. at 5.0 Bradley Geller, The Long and Winding Road: Guardianship Reform in Michigan, 1 ELDER L. J.177, 194-196 (1994). Because so many people are just not aware of alternative possibilities and community resources that could be utilized without need for guardianship, the role of probate counsel in this Michigan county provides an interesting model for consideration of best means to divert inappropriate cases and to encourage limited guardianship when that is sufficient. 0 Telephone interview with Bradley Geller, Counsel, Washtenaw County Probate Court, Ann Arbor, MI. 0 PAT KEITH AND ROBBYN WACKER, OLDER WARDS AND THEIR GUARDIANS 183 (1994).

66

general population and among service providers for advance planning through the use of alternatives, such as “designation of surrogate decision-makers prior to incapacity.”0

Professional Training

Initially, interested professionals--including judges, attorneys, and physicians--should be provided with opportunities to become skilled in training others in their respective fields about guardianship practice and the goals of guardianship reform. Such training at conferences and symposia can engender acceptance of and active involvement in improving the guardianship system by 1) providing the courts with the means for interpreting the latest data on disability in order to create effective limited guardianships;0 2) providing physicians with information on how to complete the forms on decisional impairment in such a way for the courts to determine if, and to what degree, an individual is in need of a guardian;0 and 3) providing attorneys with opportunities to closely analyze and compare their roles as guardians ad litem and advocates for potential wards. Ultimately, education about these and other key issues can serve to link the roles and perspectives of the various professional actors—each with separate responsibilities—into a coherent guardianship system that balances the underlying values of personal autonomy and independence with the need for protection. This may ensure the narrowing of the gap between statutory law and the realities of guardianship practice.

0 THE CENTER FOR SOCIAL GERONTOLOGY. NATIONAL STUDY OF GUARDIANSHIP SYSTEMS: FINDINGS AND RECOMMENDATIONS 96 (1994) [hereinafter CTR. FOR SOCIAL GERONTOLOGY]. It has been recognized that too often individuals turn to guardianship as a solution when they are unaware of availability and use of alternative mechanisms. Nonetheless, as noted in the introduction, the Guardianship Reform Project’s Task Force decided to postpone recommendations about specific alternatives until the committee has had a chance to review them and consider changes in Illinois law pertaining to powers of attorney and the Health Care Surrogate Act, to name two significant alternative mechanisms. Too often individuals turn to guardianship as a solution when they are unaware of availability and use of alternative mechanisms. 0 For an example of an educational tool for judges, see JOAN O’SULLIVAN & ANDREA IMREDY SAAH, THE GUARDIANSHIP BENCH BOOK: THE JUDICIARY’S GUIDE TO ADULT GUARDIANSHIP AND GUARDIANSHIP ALTERNATIVES IN MARYLAND (1999).0 Training of physicians and psychologists on guardianship assessment issues should be developed in consultation with national, state, and local medical associations in order that guidelines for assessing the need for guardianship be developed, maintained, and reevaluated. See CTR. FOR SOCIAL GERONTOLOGY, supra note 6, at 99.

67

Task Force Findings

1. In order to make appropriate decisions about guardianship, courts require information abouta. services and programs available in the community that could serve as less

restrictive alternatives to guardianship; b. the latest scientific data about the aging process, mental illness, developmental

disabilities; and c. new techniques for the assessment of decisional impairment.

2. Attorneys, physicians, educators, and service providers would benefit from information about assessment of decisional impairment and available community resources in order to ensure that individuals who need guardianship receive it and those who do not are provided appropriate alternatives.

3. There is insufficient information disseminated about alternatives to guardianship and available community resources to parents of minors with disabilities who are soon to become adults.

68

Task Force Recommendations for Ensuring the Success of Guardianship Reform

1. A model curriculum for continuing education on guardianship should be prepared in consultation with representatives from the judiciary and local and state bar and medical associations, along with representatives from the Office of State Guardian, county Public Guardians, and the national and Illinois Guardianship Associations. The curriculum should be flexible in order to be adapted for use with judges, attorneys, and service providers involved in the guardianship process. During the first year after preparing the curriculum, it should be tested throughout the state of Illinois in order to assess its effectiveness in meeting the needs of various target populations.

2. Professional associations such as the Illinois State Bar Association, Chicago Bar

Association, Illinois State Medical Society, the Illinois Judicial Conference, and the Illinois and National Guardianship Associations, among others, should be encouraged to provide continuing education opportunities on guardianship for their members, with certification offered.

3. The Office of State Guardian’s statewide telephone service and website should be publicized and expanded to provide information on service alternatives to guardianship and available community resources. See also Recommendation 3, supra at 43.

4. As part of the postsecondary transition process, public schools should provide information about guardianship and alternatives to guardianship to persons nearing adulthood who are believed to have decisional impairments, and to the parents of those persons.

69

Appendix ASTATE OF ILLINOISCOUNTY OF ______________

ESTATE OF Court File No. ______Docket ____________

________________________________ Page ______________Alleged Person in Need of a Guardian

Petition for Guardian of the PERSON___ ESTATE___

Petitioner__________________________________________________, on oath states:

1. ____________________________________________, whose date of birth is ________________and place of residence is _______________________________ is a Person in need of a Guardian as defined in 755 ILCS 5/11a-2: “a person 18 years or older who has a mental or physical condition that interferes with that person’s ability to understand or responsibly evaluate the risks and benefits of alternative courses of action or to make, communicate, or implement decisions about essential requirements of living, such as health, safety, self-care, or finances.”

2. The relationship to and interest of the petitioner in the alleged decisionally impaired person is:

3. The reason for requesting the guardianship is (specify examples in which the person is decisionally impaired):

4. Prior to petitioning for guardianship, the following alternatives were attempted to meet the needs noted in question 3:

5. The names and post-office addresses of alleged decisionally impaired person’s guardian, if any, agent(s) appointed under the Illinois Power of Attorney Act, if any, and nearest relatives, are listed on an attached page: “Nearest relatives” means spouse, adult children, parents, and adult brothers and sisters; if none, note nearest adult kindred.

70

6. a. The approximate values of estate: Personal $__________________ Real Estate $_______________________ b. The anticipated gross annual income and other receipts of alleged decisionally impaired: $__________

7. The petitioner asks that _______________________________________ be adjudged a decisionally impaired person and that the court order (check one or more):

Plenary Guardianship of the Person ____Plenary Guardianship of the Estate ____Limited Guardianship of the Person ____Limited Guardianship of the Estate ____

If a limited guardianship is requested, what are the specific areas to which guardianship should be limited?

8. The petitioner states that ________________________________________is willing and should be appointed guardian(s) of the alleged decisionally impaired person’s person.The relationship of the proposed guardian(s) is: ______________________________The occupation(s) of the proposed guardian(s) is: _____________________________

9. The petitioner states that _____________________________________ is willing and should be appointed guardian(s) of the alleged decisionally impaired person’s estate.The relationship of the proposed guardian(s) of the estate is: _____________________The occupation(s) of the proposed guardian(s) of the estate is: ____________________

Atty. Name Atty. No.Firm ______________________City and Zip Petitioner SignatureTelephone

___________________________ Date

Subscribed and sworn before

______________________ Notary

71

Appendix BReference Sheet for Guardianship Medical Report

Re: Assessment of Decisional Impairment

You are being asked to complete a Medical Report for a person who is alleged to be impaired in decision-making and in need of a guardian. Guardianship is a form of substitute decision-making established through a legal proceeding. The guardian is appointed by the court to act as a substitute decision-maker for another person. The court bases decisions on clear and convincing evidence that the person has been found to be unable to make necessary decisions on his or her own behalf. Guardianship should be used only when there is clear evidence that the individual meets the legal definition of a decisionally impaired person provided below.

A person in need of a guardian is “a person 18 years or older who has a mental or physical condition that interferes with that person’s ability tounderstand or responsibly evaluate the risks and benefits of alternative courses of action or to make, communicate, or implement decisions aboutessential requirements of living, such as health, safety, self-care, or finances.” 755 ILCS 5/11a-2

Thus, in guardianship adjudication, the concern is not whether the person’s actions or choices appear reasonable or will put them at increased risk, but whether the person is able to understand critical information and appreciate the reasonable foreseeable consequences of his or her decisions or lack of them. In short, are the decisions consistent with an expressed personal belief system, known values, and reality?

With regard to Question 4 (day-to-day decision-making):

Explore the factual understanding of present personal care circumstances. Can the person describe his/her present living arrangements, perceived physical and medical status, and recollection of services received?

Ask what activities must be performed in order to meet basic care needs and safety. Does the person have the requisite knowledge to meet these personal care needs? Can the person appraise the adequacy of his/her functioning in each area? Does the person recognize limitations and seek appropriate assistance when necessary?

Does the person’s capacity in specific areas vary over time, i.e. due to physical or mental illness or other influencing factors?

In addition to making a decision, is the person able to express or communicate decisions to others when the need arises?

*The use of the term “person in need of a guardian” and its definition is based on the recommended revision of 755 ILCS 5/11a-2.

72

STATE OF ILLINOISCOUNTY OF ___________________

IN THE MATTER OF THE GUARDIANSHIP OF Court File No. _____Docket ___________

___________________________________________ Page _____________Alleged Person in Need of a Guardian

MEDICAL REPORT

Note: This report will accompany the petition for guardianship and shall be based on examination(s) of the person that has (have) been completed within 3 months of filing the petition. Your completing this form is appreciated.

Date of examination: ________________________________

Personal data of individual examined: Male _____ Female _____ Age ______

Address ____________________________________________________________________

1. Known medical history and findings, including but not limited to functional, neurological, or psychiatric history: (Attach additional sheets, if necessary.)

2. Pertinent evaluations: Date

___ Complete medical examination:___ Mini-mental examination:___ Neurological testing for organic brain disorder or damage:___ Psychiatric or psychological testing:___ Other:

3. Diagnosis:

4. Please rank the person’s ability to make decisions in each of the areas below on a scale of 1 to 5: 1 = the person lacks the ability to make decisions and 5 = the person is fully able to make decisions. Capacity to make decisions Capacity varies Insufficient

over time (yes/no) information1 2 3 4 5

Personal safety ___ ___ ___ ___ ___ ___ ___Nutrition ___ ___ ___ ___ ___ ___ ___Clothing ___ ___ ___ ___ ___ ___ ___Personal hygiene ___ ___ ___ ___ ___ ___ ___Healthcare ___ ___ ___ ___ ___ ___ ___Day-to-day finances ___ ___ ___ ___ ___ ___ ___Property, investments ___ ___ ___ ___ ___ ___ ___5. Can the person communicate decisions in the areas listed above? Explain.

73

6. Does the person’s ability to communicate decisions vary over time? Explain.

7. Summarize the prognosis for recovery or improvement in the above areas:

8. State what interventions are necessary to achieve recovery or improvement in the ability to make decisions:

9. Do any of the following conditions affect the person’s capacity to make or communicate decisions regarding his/her personal care, medical, or financial needs?

Medical, Psychiatric, Developmental, or Physical Condition

____Hearing loss ____Vision loss ____Malnutrition ____Medication-related reaction ____Delirium ____Depression or other treatable mental disorders ____Dementia ____Mental retardation ____Receptive or expressive ____Stroke speech impairment ____Other: ____Traumatic brain injury ____Do not have enough information

Social/Cultural Context:

____Level of education which hinders ability to understand information and to develop essential life skills

____Limited life experience or opportunities for social interaction ____Language barrier ____Lack of awareness about community resources ____Other:

10. Please provide additional information, if any, which you think the court would find helpful to explain how any of the items above affect the person’s capacity to make or communicate decisions.

11. Are there interventions that would remediate the effect of those factors indicated above on the person’s ability to make or communicate decisions?

12. Based on this examination, summarize the medical, functional, neurological, or psychiatric status of the person. Include comments on the duration and course of the disease as appropriate.

74

13. Please list the names of persons who have provided information used in making this assessment.

Name Address Phone

______________________________________________________________________________Preparer of Report Specialty Signature Date

______________________________________________________________________________Address Telephone License Number

Provide a statement describing the license, or other credentials of the physician licensed to practice medicine in all its branches preparing this report or attach relevant information from the physician’s CV.

I have known the person, who is the subject of this report, since _____________________(date).

Place of examination: healthcare setting __ own home __ another setting(name): ____________

Examined in the presence of another individual (name and relationship)____________________

_________________________________________________________________, or alone_____.

Other person(s )who participated in the evaluation with the physician:

______________________________________________________________________________Name Profession/Credentials Date

______________________________________________________________________________Name Profession/Credentials Date

75

Appendix C

STATE OF ILLINOISCOUNTY OF ______________

IN THE MATTER OF THE GUARDIANSHIP OF Court File No. _____ Docket ___________

____________________________________________ Page _____________ Alleged Person in Need of a Guardian

COURT INVESTIGATOR REPORT

Review of Petition:

1. What are the reasons/examples given by the petitioner for requesting guardianship?

2. Do any of the above reasons relate to the capacity of the person to make or communicate decisions?

3. Is any evidence presented in the petition or medical report to support the above assertion?

4. How will the person’s incapacity to make or communicate decisions cause or expose him/her or others to harm? Specify the harm that could occur and to whom that harm would occur.

Alternatives:

76

5. Were any of the following alternatives tried prior to the petition for guardianship? If so, note the source of information:

Source of Information___ Persuasion to voluntarily accept services___ Persuasion to voluntarily leave residence___ Case management and community support services___ Home health services___ Home-delivered meals___ Specially arranged transportation to appointments___ Home visitors___ Other alternatives

What are the results of any alternatives used?

6. Prior to the petition for guardianship, if the person was deemed in need of assistance with activities of daily living or in need of supervision, were any of the following alternative housing arrangements tried?

___ Assisted living – housing units for people with disabilities___ Group home___ Adult foster care___ Nursing home admission___ Other community residential services___ Family/friends___ Other (explain)

If yes, what were the results?

7. Prior to petitioning for guardianship, did the person receive medical treatment for which another person consented? If yes, explain.

8. Prior to petitioning for guardianship, if the problem involved handling money, paying bills, or administering property or bank accounts, is there any evidence of the use of the following daily money management service alternatives? If yes, note the information source.

Source of Information

77

___ Power of attorney___ Authorized signers for bank accounts___ Electronic banking services for deposits and/or payment of bills___ Representative payee ___ Establishment of a trust ___ Other (explain)

Evaluations:

9. Were any of the following evaluations performed? If yes, provide the names of the evaluators and dates of service.

Evaluator Date ___ Complete medical examination___ Mini-mental examination___ Neurological testing for organic brain disorder or damage___ Neuropsychological examination to establish specific type and cause of dementia___ Psychiatric or psychological testing___ Occupational therapy assessment___ Social work assessment___ Other

Suitability of Proposed Guardian:

10. What is the relationship of the proposed guardian to the person?

11. How long has the proposed guardian known the person and under what circumstances?

12. How often has the proposed guardian had contact with the person?

13. Why does the individual want to be a guardian?

14. What, if any, is the proposed guardian’s personal interest in the property of the person?

15. What is the proposed guardian’s plan for the person if he/she is appointed guardian?

16. How often will the proposed guardian be able to visit the person?

78

17. Is the proposed guardian willing to confer with the person to the extent possible regarding decisions?

18. Is the proposed guardian aware of the duty to file an annual report to the court?

19. Is the proposed guardian willing to attend a training course for guardians? If not, why?

20. Are there other individuals available to be a guardian? Indicate who and what, if any, is their relationship with the potential ward.

Person’s View on Guardianship Petition

21. Does the person understand the consequences of guardianship on his/her right to make decisions ?

22. Does the person oppose the guardianship? Opposes/Does not oppose (circle)

23. If opposed, what is the reason? If person does not oppose, in what areas does he/she feel that the guardian should serve as substitute decision-maker?

24. If the person knows the proposed guardian, what is his/her opinion of this individual?

Recommendations:

25. I have informed the person of his/her right to: (check)___ an attorney___ be present at the hearing

26. In the opinion of the undersigned, it is recommended that: ___ person is/is not (circle) a person in need a guardian as defined in 755 ILCS 5/11a-2. State reason (s) for conclusions: ___ further evaluation take place prior to adjudication to ascertain the following:

79

27. If the person should have a guardian, the guardian’s specific areas of authority should be limited to:

_____________________________ ________________Court Investigator’s Signature Date

Appendix D

80

STATE OF ILLINOIS COUNTY OF _____________

IN THE MATTER OF THE GUARDIANSHIP OF Court File No. _____Docket ___________

__________________________________ Page _____________Ward

INITIAL GUARDIANSHIP PLAN

Name of guardian: _______________________________

Address of guardian: _____________________________

Date of appointment as guardian: ___________________

Based on the recommendations of the ward’s Medical Report, the Court Investigator’s Report, and the final Court Order, please describe the following plans for your ward:

RESIDENTIAL PLACEMENT

Where does the ward live?

Where does the ward wish to live?

If you are thinking about moving the ward, to where? Why?

REHABILITATIVE/VOCATIONAL STATUS

Which, if any, of the following rehabilitative services are planned to assist the ward to regain lost capacities? Describe plans. Note also how often you expect the ward to participate in activities.

Physical/Occupational/Speech therapies:

Vocational rehabilitation:

Education:

Sheltered work programs/Work evaluation: Medical treatment/services: Others (please be specific):

81

SERVICES/SOCIAL SUPPORTS

List names and relationships of the family and friends expected to remain involved with ward:

If the ward is living at home, what home services need to be arranged to maintain maximum independence?

What other recreational/social services will benefit the ward?

What transportation services are needed? Are the services available?

List any other community services to which a referral would be appropriate. Please be specific.

FINANCIAL PROPERTY, INSURANCE, GOVERNMENT OR OTHER

Check if the ward is receiving any of the following benefits. Write an “A” next to those benefits for which you are applying for the ward.

___ Veteran’s benefits ___ Medicare/Medicaid ___ Social Security disability___ Pensions ___ SSI (Supplemental Security Income) ___ Life insurance ___ Health/Accident insurance ___Trust ___Private disability insurance___ Other(describe):

Does the ward have access to spending money? Yes/No (circle) If Yes, how much per week?_____ If No, why not?

Is the ward in need of any medical device? (eyeglasses, dentures, etc.)

Does the ward have adequate food? Yes/No (circle) Clothing? Yes/No (circle)If No, what provision has been made for obtaining adequate food or clothing?

CERTIFICATION BY GUARDIAN

I hereby certify that I have consulted with the ward regarding the foregoing Guardianship Plan and have honored the ward’s wishes to the extent possible.

_______________________________________________________________________Guardian’s Signature Date

82

Appendix E

STATE OF ILLINOISCOUNTY OF _________

IN THE MATTER OF THE GUARDIANSHIP OF Court File No. _______ Docket______________ _____________________________________________ Page ________________Ward

ANNUAL REPORT OF GUARDIAN ON CONDITION OF WARD

1. I, _________________________________________, have been the guardian of the

above-named adult since _____________(date) and my annual report is as follows:

2. Present age of the ward: _______________ Date of birth: __________________

3. How often have you visited your ward during the past twelve months? ____ daily ____ weekly ____ monthly _____ quarterly _____1-3 times ____ never

How often did you speak with the ward on the phone?

Describe any contacts made with relatives and friends of the ward:

4. Living Arrangement a. Current address of the ward: ___________________________________________

Current telephone number of the ward: ___________________________________ b. The ward’s residence is

____ own home/apartment ____ guardian’s home/apartment ____ nursing home ____ hospital or medical facility ____ foster or boarding home ____ relative’s home (name and relationship): ____ other (describe):

c. The ward has been in the present residence since ___________________. If moved within the past year, state the changes and the reasons for change:

d. I recommend a different living arrangement for the ward as follows:

e. Is your ward living in the least restrictive environment consistent with his/her needs, i.e. the most independent living arrangement appropriate for the ward’s condition? ___ yes ___ no Explain:

83

5. Physical and Mental Healthcare Services a. The ward’s current physical condition is ___excellent ___ good ___fair ___ poor b. During the past year the ward’s physical condition has ____ remained the same ____ improved ____worsened Explain:

c. During the past year the ward received the following treatment and evaluation (include check-ups and dental work):

Date Ailment Type of Treatment Doctor’s Name

d. During the year, the ward’s mental condition has ____ remained the same ____ improved ____ worsened Explain:

e. During the past year, treatment or evaluation was provided by a ____ psychiatrist ____ psychologist ____ social worker

6. Social Activities/Services a. Describe the specific social activities in which the ward participated during the past year: recreational: educational:

social:

occupational:

b. During the past year, the ward’s participation in activities has ____ remained the same ____increased ____decreased Explain any change in participation:

7. Ward’s SatisfactionRate the ward’s level of satisfaction with the following:

Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied

Place of residence:Activities:Guardian:Healthcare:If the ward is dissatisfied in any way with any of the above, please explain:

8. Initial Guardianship Plan

84

Were there any activities or services documented in the initial guardianship plan that were not carried out during the year? Explain.

9. Recommendations of the Guardian a. Are there any problems or difficulties associated with the current guardianship?

___ yes ___ no If yes, explain:

b. Is a replacement guardian needed: ___ yes ___ no If yes, explain:

c. What additional information on or assistance with your role as guardian would you like to have?

d. Do you recommend the continuation of guardianship? ___ yes ___ no Explain:

e. Are there any factors not previously mentioned that you feel the court should know about? ___ yes ___ no If yes, explain:

___________________________________________ ______________________Signature Date

___________________________________________ Address

___________________________________________City, State, Zip

___________________________________________Phone Number

Appendix F

85

STATE OF ILLINOISCOUNTY OF ______________

IN THE MATTER OF THE GUARDIANSHIP OF Court File No. ______ Docket ____________

_________________________________________ Page ______________Ward

COURT MONITOR REPORT FORM

MONITOR RECOMMENDS THE FOLLOWING ACTION BY THE COURT:

1. ____ No further action needed2. ____Ward should be visited again on ____/____/____3. ____ Letter or call requesting information from guardian 4. ____ Letter or call advising guardian of resources5. ____ Letter requesting plan for improvements from guardian6. ____ Letter requesting guardian to take action within a specific time7. ____ Appoint court investigator 8. ____ Order for guardian to appear at hearing9. ____ Emergency appointment of new guardian10. ____ Removal of guardian – new guardian appointed11. ____ Termination of guardianship/restoration of rights12. ____ Revision of Guardianship Order13. ____ Other

Explain choice(s):

Monitor’s Signature: _____________________________________________

Address: _____________________________________________

_____________________________________________

Phone: _____________________________________________

Time spent on case: ___________________________________

Please attach documentation of mileage or other out-of-pocket expenses.

INFORMATION FROM GUARDIAN (Date of Contact: ____/____/____)

86

Instructions: This section asks for specific information about the relationship between the guardian and the ward. Record your observations at the end of this section.

Guardian’s Name __________________________________________________

Address __________________________________________________________

Phone ____________________________________________________________

1. Guardian of: ____ Person ____ Estate ____ Both

2. Guardian’s relationship to ward: ____ spouse ____ parent of ward ____ child of ward ____ other relative ____ friend ____ private attorney ____ public guardian/agency ____ other

3. What does the guardian do for the ward? ____Manages financial affairs. Specify:

____Provides for personal care. Specify:

4. In the past year have there been any significant changes in the ward’s physical health, decisional capacity, emotional health and living situation? Specify.

5. Has eligibility for such programs as Social security, Medicare, Medicaid, SSI, or Food Stamps ever been checked? ____ Yes ____ No

6. Does the guardian need assistance, whether from the court or from a community agency? Please specify:

7. Guardian’s assessment: 1=Excellent 2=Satisfactory 3=Fair 4=Poor 5=Don’t know Ward’s physical health ____

Ward’s emotional health ____ Ward’s intellectual functioning ____ Ward’s living situation ____

87

8. Within the past year, has the ward experienced any traumatic events or major disruptions or changes (e.g. death of a spouse, admission to a nursing home, abuse, major illness)? ____Yes ____ No If yes, please describe:

9. Is the ward in need of additional treatment or services not now provided for physical or emotional health conditions? Please specify:

10. Does the guardian feel that the guardianship should continue? ___Yes ___ No Why?

11. Does the guardian feel that any changes are needed in the scope of the guardianship? If so, describe:

12. Does the guardian feel that any changes are needed in the scope of the guardianship? If so, describe:

VISIT WITH WARD (Date of visit: ____/____/____ Length of visit_________)Instructions: The monitor should always make an effort to visit with the ward face-to-face and privately. Other sources of information about the ward include the guardian, caregivers, facility staff, relatives, and friends. Remember, you may need to talk to more than one person to get a full picture of the ward’s situation. The questions will give you specific information; you will also record your observations/impressions at the end of the session.

13. To whom did you speak to get the information for this section and how much time does he/she spend with the ward per week (check all that apply)?

Source: Time spent with ward per week (in minutes) Guardian _____Caregiver _____Facility staff _____Relative _____Friend _____Other _____

14. Ward’s age: ______ Marital status: ________ Sex: ________

88

Living Situation

15. The ward resides in:___ own home ____ group home (board & care, personal care, certified residential facility) ___ guardian’s home ____ hospital/state hospital ___ relative’s home____ nursing home ___ other ____________________________________________

Name of residence _____________________ Phone (if applicable)_______________Address______________________________________________________________

16. The ward has been in present residence since ________________ If moved in past year, state number of times _____ and reasons:

What services are provided by the facility (check all that apply)?____ administer medications ____ 24-hour supervision ____ nursing care____ help with bathing ____ help with dressing ____ help with grooming____ help in using bathroom ____ help with feeding ____ recreational activities____ physical therapy ____ day care program ____ others:

17. Monitor: Rate the quality of the ward’s living environment (take into account such things as condition of residence and furnishings, safety, handicapped accessibility, and staffing level): ____ Excellent ____ Satisfactory ____ Fair ____ Poor Note specific problems:

18. Aside from meals and personal care, how does the ward spend the day?

19. How often does the ward go away from the residence? For what purposes?

20. How are the ward’s recreational, socialization, and rehabilitation needs being met?

Physical and Mental Health

21. Does the ward have any conditions that impede communication? ____ Yes ____ No If so, please specify:___ hearing impairment ___ mentally ill ___ speech impairment

___ mental retardation ___ unwilling to speak ___ comatose ___ foreign language speaking ___ other (describe):

22. The ward ___is ___ is not under regular care by a physician: Doctor’s name __________________________________________________

89

23. How many times has this doctor seen the ward on an outpatient basis in the past year? Last visit: ___/___/___

How many times has the ward been hospitalized in the past year? _____

24. Medications prescribed:____ none ____ 1-4 ____ 5-9 ____ 10 or more

25. Describe any problems with medications (e.g., ward needs assistance or refuses to take medications, medications prescribed by multiple doctors)?

Intellectual Functioning

26. In what specific areas is the ward able to make decisions?

27. In the past year, this capacity to make decisions has ____ improved ____ declined Explain:

28. If improved, is the guardianship the least restrictive alternative for care of the ward?

Evaluation of Guardianship

Monitor: Ask these questions of the ward directly, whenever possible. If for some reason you cannot speak with the ward, answer these questions yourself using the information you have gathered and the observations you have made. 30. Who answered questions? Ward ____ Monitor ____ If Monitor, what prevented you from speaking with the ward?

31. Questions for ward: VS (very satisfied); S (Satisfied); NS (not satisfied); NA (unable to answer)

How satisfied is the ward with his/her care? ____ How satisfied is the ward with the caregiver? ____ How satisfied is the ward with the guardian? ____ If the ward answers “not satisfied” to any of these questions, please elaborate:

32. Does ward feel that the guardianship is still needed? ____Yes ____ No If no, why?

90

33. Are any changes (e.g. services, housing, guardian) requested by ward? If so, what?

34. What is your assessment of the following circumstances of the ward and what is the evidence (e.g. observation, medical report) for this assessment?

Excellent Satisfactory Fair Poor Don’t Know EvidencePhysical health ___ ___ ___ ___ ___Emotional health ___ ___ ___ ___ ___Decisional capacity ___ ___ ___ ___ ___Living situation ___ ___ ___ ___ ___Relationship with guardian ___ ___ ___ ___ ___Caregiver ___ ___ ___ ___ ___

PLEASE RETURN TO THE FIRST PAGE TO MAKE YOUR

RECOMMENDATIONS TO THE COURT.

91

Appendix G

PROPOSED STATUTORY REVISIONS

755 ILCS 5/11a-1. Developmental disability defined § 11a-1. Developmental disability defined. "Developmental disability" means a disability which is attributable to: (a) mental retardation, cerebral palsy, epilepsy or autism; or to (b) any other condition which results in impairment similar to that caused by mental retardation and which requires services similar to those required by mentally retarded persons. Such disability must originate before the age of 18 years, be expected to continue indefinitely, and constitute a substantial handicap.

755 ILCS 5/11a-2. Disabled Person in need of a Guardian defined §11a-2"Disabled A P erson in need of a Guardian " defined. "Disabled person" means a person 18 years or older who (a) because of mental deterioration or physical incapacity is not fully able to manage his person or estate, or (b) is a person with mental illness or a person with a developmental disability and who because of his mental illness or developmental disability is not fully able to manage his person or estate, or (c) because of gambling, idleness, debauchery or excessive use of intoxicants or drugs, so spends or wastes his estate as to expose himself or his family to want or suffering. has a mental or physical condition that interferes with that person’s ability to understand or responsibly evaluate the risks and benefits of alternative courses of action or to make, communicate or implement decisions about essential requirements of living such as health, safety, self-care or finances.

755 ILCS 5/11a-3. Adjudication of disability- Guardianship--Power to appoint guardian § 11a-3. Adjudication of disability Guardianship-Power to appoint guardian.

(a) Upon the filing of a petition by a reputable person or by the alleged disabled Person in need of a Guardian himself or on its own motion, the court may adjudge a person to be a disabled person in need of a guardian and may appoint

(1) a plenary guardian of his the person, if because of his disability he lacks sufficient understanding or capacity to make or communicate responsible decisions concerning the care of his person. It finds that all the powers and duties listed in Section 11a-17 are needed to provide the Person in need of a Guardian; or (2) a limited guardian of the person, if it finds that some, but not all, of the powers and duties listed in Section 11a-17 are needed to provide for the Person in need of a Guardian; and(3) (2) a plenary guardian of his the estate, if because of his disability he is unable to manage it finds that all the powers and duties listed in Section 11a-18 are needed to provide for the management of his estate or financial affairs; or(4)a limited guardian of the estate, if it finds that some, but not all, of the powers and duties listed in Section 11a-18 are needed to provide for the management of his estate or financial affairs. or

92

Consistent with the provisions of this Section, the court may appoint both a guardian of his the person and of his the estate.

(b) Guardianship shall be utilized only as is necessary to promote the well-being of the disabled Person in need of a Guardian, to protect him from neglect, exploitation, or abuse, and to encourage development of his maximum self-reliance and independence. Guardianship shall be ordered only after consideration of less restrictive alternatives and only to the extent necessitated by the individual's actual mental, physical, and adaptive limitations.(c) No guardian shall be appointed unless the court finds that the alleged Person in need of a Guardian meets the criteria defined in Section 11a-2 by clear and convincing evidence.

93

755 ILCS 5/11a-9. Report §11a-9. Report.(a) The petition for adjudication of disability the need for guardianship and for

appointment of a guardian should be accompanied by a report which contains the following report, which contains (1) a description of the nature and type of the respondent's disability decisional impairment and an assessment of how the disability decisional impairment impacts on affects the ability of the respondent to make decisions or to function independently; (2) an analysis and results of evaluations of the respondent's mental and physical condition and, where appropriate, educational condition, adaptive behavior and social skills, which have been performed within 3 months of the date of the filing of the petition; (3) additional reports by all social service agencies that have had contact with the respondent within a year of the date of filing the petition; an opinion as to whether guardianship is needed, the type and scope of the guardianship needed, and the reasons therefor; (4) a recommendation as to the most suitable living arrangement and, where appropriate, a treatment or habilitation plan for the respondent and the reasons therefor; (5) the signatures of all persons who performed the evaluations upon which the report is based, one of whom shall be a licensed physician, and a statement of the certification, license, or other credentials that qualify the evaluators who prepared the report and on whose evaluations the report is based. The court may order the use of a specific report form, including but not limited to the one that follows:

Medical Report form (see Appendix B)

(b) If for any reason no report accompanies the petition, the court shall order appropriate evaluations to be performed by a qualified person or persons and a report prepared and filed with the court at least 10 days prior to the hearing.

(c) Unless the court otherwise directs, any report prepared pursuant to this Section shall not be made part of the public record of the proceedings but shall be available to the court or an appellate court in which the proceedings are subject to review, to the respondent, the petitioner, the guardian, and their attorneys, to the respondent's guardian ad litem court investigator, and to such other persons as the court may direct.

94

755 ILCS 5/11a-10. Procedures preliminary to hearing § 11a-10. Procedures preliminary to hearing.

(a) Upon the filing of a petition pursuant to Section 11a-8, the court shall set a date and place for hearing to take place within 30 days. The court shall appoint a guardian ad litem court investigator to report to the court concerning the respondent's best interests consistent with the provisions of this Section, except that the appointment of a guardian ad litem court investigator shall not be required if both the respondent and designated guardian are present in court at the time of adjudication, and the court determines that such appointment is not necessary for the protection of the respondent or a reasonably informed decision on the petition. If the guardian ad litem court investigator is not a licensed attorney, he or she shall be qualified, by training or experience, to work with or advocate for individuals with the developmentally disabled disabilities, mentally illness, physically disabilities disabled, the elderly, or persons disabled impaired because of mental deterioration, depending on the type of disability decisional impairment that is alleged in the petition. The court may allow the guardian ad litem court investigator reasonable compensation. The guardian ad litem may consult with a person who by training or experience is qualified to work with persons with a developmental disability, persons with mental illness, or physically disabled persons, or persons disabled because of mental deterioration, depending on the type of disability that is alleged. The guardian ad litem shall personally observe the respondent prior to the hearing and shall inform him orally and in writing of the contents of the petition and of his rights under Section 11a-11. The guardian ad litem shall also attempt to elicit the respondent's position concerning the adjudication of disability, the proposed guardian, a proposed change in residential placement, changes in care that might result from the guardianship, and other areas of inquiry deemed appropriate by the court. At or before the hearing, the guardian ad litem shall file a written report detailing his or her observations of the respondent, the responses of the respondent to any of the inquires detailed in this Section, the opinion of the guardian ad litem or other professionals with whom the guardian ad litem consulted concerning the appropriateness of guardianship, and any other material issue discovered by the guardian ad litem. The guardian ad litem shall appear at the hearing and testify as to any issues presented in his or her report.(b) The circuit court of each county shall develop and maintain a registry of persons who are willing and qualified to serve as court investigator in guardianship matters. The court shall choose as court investigator a person whose name appears on the registry, except in extraordinary circumstances such as the need for particular expertise. (c) To be eligible for the registry, a person shall

(1) Present a written statement outlining his or her background and qualifications. The background statement shall include level of formal education; information regarding training related to the court investigator’s duties; number of years’ experience as a court investigator; number of appointments as a court investigator and the county or counties of appointment; criminal history; and evidence of the person’s knowledge, training and experience in each of the following: needs of impaired elderly people, mental illness, development disabilities, and other areas relevant to the needs of impaired persons.

95

(2) Except in extraordinary circumstances, to be eligible for the registry, a court investigator shall complete a training program designated by the circuit court.

(3) The court investigator appointed pursuant to this section shall have the following duties:

(A)To meet and consult with the alleged Person in need of a Guardian as soon as practical following appointment and explain, in language which such person can reasonably be expected to understand, the substance of the petition, the nature of the resultant proceedings, the person’s right to contest the petition, the identification of the proposed guardian, the right to independent legal counsel, and the right to be present in court at the hearing on the petition;(B)To obtain written or oral reports from qualified professionals as are necessary to permit the court investigator to complete the report required by this section;(C)To meet with the person whose appointment is sought as guardian and ascertain the proposed guardian’s knowledge of the duties, requirements, and limitations of a guardian and the steps the proposed guardian intends to take or has taken to identify and meet the needs of the alleged Person in need of a Guardian;(D)To consult as necessary to complete the investigation and report required by this section with those known relatives, friends, or other persons the court investigator determines have had a significant, continuing interest in the welfare of the alleged Person in need of a Guardian;(E)At least one week prior to the hearing, to provide the court with a written report which shall include the following:

(i) A description of the nature, cause, and degree of decisional impairment and the basis upon which this judgment was made;

(ii) A description of the needs of the alleged Person in need of a Guardian for care and treatment, the residential requirements of the alleged Person in need of a Guardian, and the basis upon which these findings were made;

(iii) An evaluation of the appropriateness of the guardian whose appointment is sought and a description of the steps the proposed guardian has taken or intends to take to identify and meet current and emerging needs of the alleged Person in need of a Guardian;

(iv)A description of any alternative arrangements previously made by the alleged Person in need of a Guardian;

(v) A description of the abilities of the alleged Person in need of a Guardian and a recommendation as to whether a guardian should be appointed. If appointment of a limited guardian is recommended, the court investigator shall recommend the specific areas of authority of the guardian;

(vi)Any expression of approval or disapproval made by the alleged Person in need of a Guardian concerning the guardianship or proposed guardian;

96

(vii) Unless independent counsel has appeared for the alleged Person in need of a Guardian, an explanation of how the person responded to the questions pertaining to his rights to independent counsel and to be present at the hearing on the petition.

(F) The guardian ad litem court investigator shall appear at the hearing and testify as to any issues presented in his or her report.

(b)(d) The court (1) may appoint counsel for the respondent, if the court finds that the interests of the respondent will be best served by the appointment, and (2) shall appoint counsel upon respondent’s request or if the respondent takes a position adverse to that of the guardian ad litem court investigator. The respondent shall be permitted to obtain the appointment of counsel either at the hearing or by any written or oral request communicated to the court prior to the hearing. The summons shall inform the respondent of this right to obtain appointed counsel. The court may allow counsel for the respondent reasonable compensation. (c)(e) If the respondent or respondent’s estate is unable to pay fully or in part the fee of the guardian ad litem court investigator or appointed counsel, or both, the cost of services for either or both shall be paid by the county in which respondent is residing at the time of the petition. the court may enter an order for the petitioner to pay all such fees or such amounts as the respondent or the respondent's estate may be unable to pay. However, in cases where the Office of State Guardian is the petitioner, consistent with Section 30 of the Guardianship and Advocacy Act, [FN1] or where an elder abuse provider agency is the petitioner, pursuant to Section 9 of the Elder Abuse and Neglect Act, [FN2] no guardian ad litem or legal fees shall be assessed against the Office of State Guardian or the elder abuse provider agency.(d)(f) The hearing may be held at such convenient place as the court directs, including at a facility in which the respondent resides. (e)(g) Unless he is the petitioner, the respondent shall be personally served with a copy of the petition and a summons not less than 14 days before the hearing. The summons shall be printed in large, bold type and shall include the following notice:

(Notice of Rights of Respondent form as in current statute)

(f)(h) Notice of the time and place of the hearing shall be given by the petitioner by mail or in person to those persons, including the proposed guardian, whose names and addresses appear in the petition and who do not waive notice, not less than 14 days before the hearing.

97

755 ILCS 5/11a-11. Hearing §11a-11

(a) The respondent is entitled to be represented by counsel, to demand a jury of 6 persons, to present evidence, and to confront and cross-examine all witnesses. The hearing may be closed to the public on request of the respondent, the guardian ad litem court investigator, or appointed or other counsel for the respondent. Unless excused by the court upon a showing that the respondent refuses to be present or will suffer harm if required to attend, the respondent shall be present at the hearing.(b) (Blank)

(c) Upon oral or written motion by the respondent or the guardian ad litem court investigator or on the court’s own motion, the court shall appoint one or more independent experts to examine the respondent. Upon the filing with the court of a verified statement of services rendered by the expert or experts, the court shall determine a reasonable fee for the services performed. If the respondent is unable to pay the fee, the court may enter an order upon the petitioner to pay the entire fee or such amount as the respondent is unable to pay. However, in cases where the Office of State Guardian is the petitioner, consistent with Section 30 of the Guardianship and Advocacy Act, [FN1] no expert services fees shall be assessed against the Office of the State Guardian.(d) In an uncontested proceeding for the appointment of a guardian the person who prepared the report required by Section 11a-9 will only be required to testify at trial upon order of court for cause shown.(e) At the hearing the court shall inquire regarding: (1) the nature and extent of respondent's general intellectual and physical functioning; (2) the extent of the impairment of his adaptive behavior if he is a person with a developmental disability, or the nature and severity of his mental illness if he is a person with mental illness; (3) the understanding and capacity of the respondent to make and communicate responsible decisions concerning his person; (4) the capacity of the respondent to manage his estate and his financial affairs; (5) the appropriateness of proposed and alternate living arrangements; (6) the impact effect of the disability decisional impairment upon the respondent's functioning in the basic activities of daily living and upon the important decisions faced by the respondent or normally faced by adult members of the respondent's community; and (7) any other area of inquiry deemed appropriate by the court. (f) An authenticated transcript of the evidence taken in a judicial proceeding concerning the respondent under the Mental Health and Developmental Disabilities Code [FN2] is admissible in evidence at the hearing.(g) If the petition is for the appointment of a guardian for a disabled beneficiary of the Veterans Administration, a certificate of the Administrator of Veterans Affairs or his representative stating that the beneficiary has been determined to be incompetent by the Veterans Administration on examination in accordance with the laws and regulations governing the Veterans Administration in effect upon the date of the issuance of the certificate and that the appointment of a guardian is a condition precedent to the payment of any money due the beneficiary by the Veterans Administration, is admissible in evidence at the hearing.

98

755 ILCS 5/11a-17. Duties and Training of personal guardian§ 11a-17. Duties and Training of personal guardian.

(a) To the extent ordered by the court and under the direction of the court, the guardian of the person: (1) shall have custody of the ward and the ward's minor and adult dependent children; (2) shall procure for them and shall make provision for their support, care, comfort, health, education and maintenance, and professional services as are appropriate, but the ward's spouse may not be deprived of the custody and education of the ward's minor and adult dependent children, without the consent of the spouse, unless the court finds that the spouse is not a fit and competent person to have that custody and education; and (3). Tthe guardian shall assist the ward in the development of maximum self-reliance and independence. The guardian of the person may petition the court for an order directing the guardian of the estate to pay an amount periodically for the provision of the services specified by the court order. If the ward's estate is insufficient to provide for education and the guardian of the ward's person fails to provide education, the court may award the custody of the ward to some other person for the purpose of providing education. If a person makes a settlement upon or provision for the support or education of a ward, the court may make an order for the visitation of the ward by the person making the settlement or provision as the court deems proper. (b) No more than 60 days after appointment, the guardian shall file with the court a written report setting forth future plans to provide for the ward’s care, allocate resources, and increase the ward’s functional capacities. The court shall encourage and may require the guardian of the person to undergo a training program designated by the court. (b) (c) If the court directs, the guardian of the person shall file with the court at intervals indicated by the court, a report that shall state briefly: The Guardian shall submit, at least annually but more often if the court so orders, a report that states: (1) the current mental, physical, and social condition of the ward and the ward's minor and adult dependent children; (2) their present living arrangement, and a description and the address of every residence where they lived during the reporting period and the length of stay at each place; (3) a summary of the medical, educational, vocational, and other professional services given to them; (4) a resume of the guardian's visits with and activities on behalf of the ward and the ward's minor and adult dependent children, including efforts made to increase the ward’s functional capacities; (5) if the ward is institutionalized, whether the guardian considers the current plan for care, treatment, or habilitation to be in the ward’s best interest; (6) plans for future care; (5)(7) a recommendation as to the need for continued guardianship; (6)(8) any other information requested by the court or useful in the opinion of the guardian. The Office of the State Guardian shall assist the guardian in filing the report when requested by the guardian. If the court finds significant problems with the guardianship disclosed in either the report of the guardian or the report of a court monitor, Tthe court may take such action as it deems appropriate pursuant to the report. The court may order the guardian to use a specific form, including but not limited to the one that follows:

Annual Report of Guardian form (see Appendix E)

99

755 ILCS 5/11a-20. Termination of adjudication of disability--Revocation of letters—Modification § 11a-20 (b) A request by the ward or any other person on the ward’s behalf, under this Section may be communicated to the court or judge by any means, including but not limited to informal letter, telephone call or visit. Upon receipt of a request from the ward or another person including a court monitor, the court may appoint a guardian ad litem court investigator to investigate and report to the court concerning the allegations made in conjunction with said request, and if the ward wishes to terminate, revoke, or modify the guardianship order or if the court monitor recommends termination or modification of the guardianship, to prepare the ward’s petition and to render such other services as the court directs.

100

Appendix H

Report on Focus Groups

for the Illinois Guardianship Reform Project

Prepared for:Equip for Equality, Inc.

Prepared by:Metro Chicago Information Center

360 N. Michigan, Suite 703Chicago, IL 60601

(312) 580-2873

101

TABLE OF CONTENTS

I. Introduction:................................................................................................................90

II. General Findings:........................................................................................................91

III. Findings: Consumers of Guardianship Services........................................................93

1. Guardianship as the consumers see it...........................................................................932. Getting a guardian.........................................................................................................953. Training and monitoring guardians..............................................................................964. Alternatives to guardianship.........................................................................................965. Guardianship - a permanent status?..............................................................................97

IV. Findings: Family Members.........................................................................................99

1. Reasons for guardianship............................................................................................1002. Experiences with the process......................................................................................1003. Needs of the family members.....................................................................................1014. Needs of the wards......................................................................................................1025. Recommendations for improving the guardianship system………103

V. Findings: Service Providers…………………………………………………… 105

1. Experiences with guardianship...................................................................................1052. Goals of the system.....................................................................................................1063. How the present system is working............................................................................1084. Monetary costs of guardianship..................................................................................1125. Differences between Cook County and downstate Illinois.........................................1156. Knowledge of the system............................................................................................1157. Length of the process..................................................................................................1168. What changes should be made to improve the guardianship process?.......................116

Focus Group Discussion Guide: Consumers 120Focus Group Discussion Guide: Family Members 122Focus Group Discussion Guide: Service Providers 123

102

I. Introduction:

The Metro Chicago Information Center (MCIC) conducted six focus groups (three each in Chicago and Springfield) as part of the Guardianship Reform Project, an initiative of Equip for Equality. These groups were held between May 24, 1999, and June 5, 1999. The purpose of these groups was to ascertain participants’ experience with the guardianship process, as well as to determine what alternatives existed for the guardianship process. The research was conducted to provide information to be used to develop a model reform program for Illinois’ Guardianship system. The focus groups will be one of the initial steps in the process. A Task Force has been formed to review focus group results and other data to develop a model guardianship system.

Focus groups were conducted at MCIC’s Chicago office on May 24-26 and at the Renaissance Hotel in Springfield on June 4 and 5. Groups and numbers (in parenthesis) participating in the focus groups were:

Consumers (10): Persons who currently have a guardian, who previously had a guardian, or who have a disability and have knowledge of the guardianship system.

Family Members (13): Persons who are, had been, or were considering being named guardian for a family member or friend.

Service Providers (21): Persons representing organizations who deal with guardianship issues on a regular basis.

Results from the Chicago and Springfield groups are combined by category in the following report.

The focus groups were designed and moderated by the Metro Chicago Information Center, (MCIC) with input from Equip for Equality, Inc. MCIC is an independent not-for-profit research consulting organization that provides research services on public policy issues to not-for-profit, academic, governmental, and corporate clients. Major MCIC funders include the Chicago Community Trust, the John D. and Catherine T. MacArthur Foundation, the McCormick-Tribune Foundation, and the United Way of Chicago.

Woody Carter, MCIC’s Director of Research, moderated focus group sessions in Chicago, and Tim Grzesiakowski, MCIC’s Director of Marketing, moderated the Springfield sessions. Each group ran approximately 120 minutes, and followed discussion guides developed by MCIC with input from Equip for Equality. The moderator’s guides are included in the Appendix of this Report.

103

II. General Findings: The following is a summary of the attitudes and opinions of the consumers, family members, and service providers who participated in the six focus groups in Chicago and Springfield.

Safety of the Client Participants in all six groups described a primary purpose of the guardianship

process to protect the safety of the person for whom guardianship was being sought. Service providers described the “safety and well-being of the client.” Family members called it “respect for the welfare of the client.” Consumers referred to it as “needing help with decisions.”

Clarification of the Guardianship Process There was a general consensus that clarification of the guardianship process was

needed for all parties involved in the procedure. Service providers felt that clear guidelines for their staff members were needed on

how to refer clients for guardianship. Family members discussed the need for a clarification of what some viewed as an

overwhelming process. Some family members expressed a concern that legal aspects of the guardianship process needed to be tightened up so clients would not be at a disadvantage.

Consumers described a need to know more options they would have for handling their affairs, or how they could have guardianship removed, once they were able to handle their affairs.

Education Improved education about the guardianship process was a recurring theme among

all three groups. Members in all groups felt there was a need for more training about the procedure for all parties (family members, clients, guardians and potential guardians, social service providers, judges, attorneys) involved. Suggested methods to disseminate information about guardianship included a website, workbooks, and classes.

Alternatives to Guardianship Social service providers and family members described the need for improved

awareness of having power of attorney of the client’s financial matters. They felt that power of attorney would be less restrictive than guardianship in some situations.

Social service providers described many alternatives to full guardianship. Depending on the client’s situation, these included limited or temporary guardianships, designated representative payees, skills trainers, assertive case managers, and personal attendants. It should be noted that many of these alternatives would require additional funding.

Consumers discussed the need to know what alternatives they had to guardianship. Some consumers were aware of social service agencies, Equip for Equality, and the Department of Rehabilitative Services providing these types of services. However, there was a general sense that if consumers had a better

104

understanding of what options were available to them, or who to contact about those options, it might reduce the need for guardianship in some instances.

Funding Participants in all six groups, service providers, family members, and consumers,

regardless of location, Chicago or Springfield, stressed the need for more funding for the guardianship process and issues pertaining to guardianship.

Both family members and service providers described the need to make the costs of filing for guardianship more affordable. Participants described wide variations of costs, depending on the nature of the case, geography, and attorney’s costs.

Other Issues Service providers raised statewide standardization of how guardianship cases are

adjudicated as an important issue. This appeared to be more of an issue downstate, where judges might be less likely to handle these types of cases, or handle them as one of many types of cases they heard. This was less of an issue in the major metropolitan areas such as Chicago and East St. Louis, where specific judges were assigned to handle guardianship cases.

Service providers in Springfield discussed the role of Public Guardians in great detail. Some had knowledge that each county in Illinois had a Public Guardian. Others were not aware of this. It was agreed that there needed to be standardization of the Public Guardian’s role statewide and that training should be included as part of that standardization. Too often, the Public Guardian appeared to be a political appointee.

Some family members who had children in state institutions, and were satisfied with their care, were concerned about the role of “professional guardians.” They felt that they, as parents, were making the best decision for their child, and they were very concerned that outsiders, who may not have their child’s best interest at heart, could be involved in deciding their treatment.

Service providers stated difficulties in harmonizing contradictory provisions of laws that concern clients.

Consumers all discussed the need for more education. They felt that they could use more education, such as living skills. Many consumers described their formal education as incomplete.

Some consumers felt that their guardians’ motives were not always in their best interest.

Consumers were primarily concerned with the loss of control of their own funds and if the guardians were making financial decisions in their best interest. Consumers also related incidents of losing other income (such as SSI) as the result of changes in status.

105

III. Findings: Consumers of Guardianship Services

1. Guardianship as the consumers see it

Guardianship consumers may not comprehend all the nuances of guardianship, but they clearly understand that its basic goal is to take away their decision-making rights and give them to others:

“The way I see it is when somebody kind of makes decisions for you and you don't have rights to make them on your own. It's more or less for people that really aren't capable, and that's what it means to me.” Chicago consumer

“I think guardianship is about someone who actually can't take care of himself, but also it's like take control of your money. Actually like my mom's my payee and my guardian, so she pays for my rent at the group home and she's my protective guardian in case something happens to me, like an emergency; whether I move around or whatever, she's a guardian. Sometimes she does make a decision for me, sometimes she doesn't.” Chicago consumer

“When someone is medically incompetent, not able to make decisions. I had a representative payee; I'm not sure if there’s a difference between the guardianship and payee, I don't know.” Chicago consumer

“You know what got taken away from me most of all, that hurt me the most…I can't have children now because my sister, when she got my guardianship, she took me to the hospital and got my tubes tied cause I'm too stupid to have a kid, so that right she took away from me.” Downstate consumer

Consumers would like to readjust the job description of guardian to place a higher priority on promoting collaborative decision-making:

“Cooperate more, I mean rather than be authoritarian about the whole situation.” Chicago consumer

“Maybe just explain things to them, help them, explain about maybe whatever state they're going to, just give them information like that.” Chicago consumer

“Maybe just helping [consumers] feel more confident about themselves.” Chicago consumer

Not surprisingly, this basic removal of rights creates problems for consumers who wish to make their own decisions differing from the guardian’s wishes:

“I wanted to move here to Chicago. To live here, it might be easier for me to go back and forth and save money. And my mom doesn't want me to be independent but I want to be independent. I know how to do things for myself, and I know my

106

friends will help me too ’cause I have my friends to help me. And I want to be around more deaf community and hang out with the deaf people and want to move to the Bridge Program. And so I'm waiting for them to contact me. Then I decided I didn't want the program; I want to live independently because for 13 years I've been in this independent program and so I know how to do stuff for myself and how to take care of myself.” Chicago consumer

“I can't go downtown by myself and I can't do this or that. And so it made me feel really bad about myself. I really felt awful; I had no self-esteem left because they kept on telling me all these things I couldn't do at all. And so finally, they weren't letting me do anything. I want to be equal with everyone else and I felt like it wasn't fair. So if we can work it out between myself and my guardian for me to be able to do stuff, that would make me feel great. But you know if I sort of fell down and failed at something, my guardian would be there to back me up. But that didn't happen.” Chicago consumer

“I'm always worried about whether or not I can do something, and I'm worried if they're going to say yes or no, so it gets really tense. And I get really bored at work, and I was worried all day yesterday at work because I didn't know if they were going to say yes or no.” Chicago consumer

Consumers may feel that guardianship is stigmatizing and can actually inhibit their ability to act effectively in the world:

“When I have a guardian everybody thinks that I don't know how to do stuff just because I have a guardian. And people get all paranoid and worried about me but I really know how to handle things myself. Like before, you know, I wasn't sure how to do all kinds of stuff for myself but I've learned a lot.” Chicago consumer

The importance of “independence” is a key phrase that came up frequently in the focus groups:

“I think independence is really, really good. I think people have a right to make their own decisions if they can. Sometimes when you really want to be independent, I think everybody has the right to make their own decisions with how much money they should have in their pockets…[My mom] gives me independence but sometimes she doesn't give me enough money to keep in my pocket to spend with my friends.” Chicago consumer

“I'm a mental health consumer, which means I have a disability myself, and I also work for a mental health agency. And we get a lot of people that come in that have guardianship problems, and one of the things that I hear a lot in the office is that of the struggle of independence between what the guardian thinks should be done and what the person is capable of doing.” Chicago consumer

107

“And deaf people, you know many people think deaf people can't do stuff just because we're deaf, but we really can do all kinds of stuff. And it's really because of hearing people oppressing us and telling us that we can't do stuff that makes us feel like crap about ourselves. You know, and that's really not the way it is. If we're left to our own devices, we really can do things that you don't think we can.” Chicago consumer

“You have to teach them to find where the responsibility starts and ends. You know there's a point at which an individual has to take responsibility for himself, and it's his personal choice if he doesn't want to take his medicine. It might be better in the guardian's mind or somebody else's mind for that person to take his medicine, but if the individual wants to try for a month or for a year or whenever, you know they should have that option.” Chicago consumer

“I think you know because there's all those things that have Braille, like the elevators have Braille numbers and the bathroom doors now have Braille on them and stuff like that, so why do people keep telling you that you can't do stuff if everything is accessible. Because there are so many things that you can do on your own because there's Braille everywhere.” Chicago consumer

2. Getting a guardian

Focus group participants were asked what they remembered about court or other steps in the guardianship process.

“It was a long time ago when my staff told me that my mom was going to be my guardian and the court had agreed to make my mom the guardian so she could take care of me. I didn't want it. That was before I graduated from school. My mom went to court and they agreed to make her the protective guardian. I sat there in the courtroom and watched what was going on. That was the first time I'd been to court, but they were all talking so fast. There was no [sign language] interpreter. Yeah, it was like something about problems with transportation or the bus or whatever. But there was no interpreter there, so I didn't know what was going on. Later, after I found out more information about deafness, I realized there should have been one.” Chicago consumer

“I don't know how I got a legal guardian; I don't know how the hell that happened. I don't know who gave me a legal guardian. They said that I couldn't make my own decisions and I couldn't take care of myself at the time when that happened.” Chicago consumer

“I don't know how it is with other disabilities, but I know with mental disabilities it's very overwhelming to have to go to court or even meet like a coordinator or somebody, you know somebody important; people get all upset about a meeting, and they really need like a peer or someone that knows the system that they could

108

relate to that could break it down for them so it wouldn't be such an exasperating situation.” Chicago consumer

3. Training and monitoring guardians

“Maybe Equip for Equality should offer some kind of training before someone becomes a guardian, and if they've gone through it then they can be okay, like certified.” Chicago consumer

“There should be a monitor and that's my own personal story. But what I think and what I've heard from people who call the office [at the mental health center] is that their money is sometimes not safe because the manager, the guardian, needs to be monitored too.” Chicago consumer

4. Alternatives to guardianship

We asked focus group participants to identify how they could secure help and support outside of the Guardianship system.

“We need more schooling. With a disability that I cannot read or write, maybe there should be a school that will do one-on-one. I've had tutors that will quit on me because they don't have the time or the energy.” Downstate consumer

“I know how to drive, but I came with him [another focus group participant] on the bus and the train, and he knows how to do that. I know how to get here by driving, and he knows how to get here on the bus and the train. He can get really lost on the train, so I had to teach him how to get here in the big city. And so we have two opposite skills, the two of us: one of us can drive and the other one can take public transportation better.” Chicago consumer

“I think you should turn to somebody that can help you out just a little bit if you have any questions or concerns about your checkbook, your landlord, or problems with bankruptcy that you couldn't understand. If you bring it over to someone's attention,[like] a brother. I would contact my brother and he would give me advice what to do. Or he would give me some information what to do about it.” Chicago consumer

“I try to connect with the mental health center because I don't have any family here. They're all in New York and other places, so I can't really rely on family members. One thing about the money is that the people that are in charge of your money should be monitored too because they could misuse your money, and that's what happened to me…they would get my check and then they would tell me how I could spend my money, like they wanted me to give so much money for tithing, and I thought it would be more important to get my food, you know, and then there was a struggle there. And because they were from the church they felt the tithing was important.” Chicago consumer

109

“I rely on social service agencies or mental health centers. Usually they have social workers or some kind of case worker that could be assigned to you, and then they could work, help you work out the details of calling Equip for Equality or someplace that they would be able to connect you with that would have the right, maybe, laws so you could do this.” Chicago consumer

“The Department of Rehabilitation -- I feel like sometimes they're a guardian to me. I know they're not, but it feels like they are sometimes. I told them I wanted to get into certain things and, you know, like right now I'm trying to better myself so I can get a job. I'm taking computer classes at Triton so I can get a job. Because the kind of job I want requires learning all kinds of computer skills. And I've been having to struggle with [the Department] since I've been in their program. No matter what agency I've been in I've had battles with them, ongoing.” Chicago consumer

“I think it's important to have a peer mentor or somebody who's had the same disability you have, been on the same path that you're trying to go on, and can show you the ropes. That would solve a lot of our problems in the court with the guardianship or whatever you are trying to do because you would have a better understanding.” Chicago consumer

“I went into a program where I learned how to do a whole lot of stuff for myself, just like everybody else, and so now I feel like I can handle things because I've learned so much about how to be independent. So now I know stuff and I feel like I have a guardian who's all paranoid and worried about what I'm doing all the time. It doesn't feel right.” Chicago consumer

5. Guardianship – a permanent status?

Consumers not only begin to think and talk about more independence within the system but also how to escape the system completely:

“Last April two or three friends of mine were talking about something that happened and they said, you know you can do stuff yourself, you're independent; forget about having a guardian, you should just get rid of your guardian. I've heard all these different things that my friends were saying and I finally agreed with them that it was really enough, that I had had enough of having a guardian and I didn't need one anymore.” Chicago consumer

“I don't want a guardian; I think I can handle[things] myself. I think I've lived 10 years, 12 years of my life without having a guardian.” Chicago consumer

“It's more like I'm trying to find the way where I could just become my own legal guardian, and right now I'm having problems becoming my own legal guardian.

110

And I'm still working…I’m 36 years old and I think that I am more responsible. I'm old enough to take care of myself, and I think that I don't need a legal guardian anymore.” Chicago consumer

It’s not clear to consumers how to end their guardianship, although some have working hypotheses and hopes:

“So it's basically when I prove to her that I'm more capable of being on my own, and I'm not impulsively spending a lot of money, then she won't be my guardian any more. So I'm halfway there.” Chicago consumer

“Maybe I can get some kind of a test where there's all kinds of situations where I tell them what I do in a certain situation, and if I pass, and it's obvious that I can do that stuff…like I can get my own job and that I know what to do in terms of going food shopping, paying my insurance, and all that kind of stuff, then I wouldn't need a guardian anymore. And the guardian would say you don't need me anymore. And you know there's certain things that I still don't know how to do that maybe I need another year or two with a guardian. It depends on how I feel, you know; it depends on how the guardian feels. You know it's good to sort of experiment. Maybe this summer when I move to Chicago to live in an apartment, I'll have a job and it will be easier- maybe two jobs- it will be easier for me to pay for my own apartment that way.” Chicago consumer

“Could be a lawyer or could be a judge. I was told to go to a judge. A judge or a lawyer and then when you speak to the judge and the lawyer, once you speak to either one of those people, they will be the one to take it from there. They'll be the one, okay Mr. [name], you don't need a legal guardian anymore, you're on your own now, you can make your own decisions, you no longer have a legal guardian. I feel that you're capable enough to take care of yourself. You can have a legal guardian for so many years but you have to sign a piece of paper and you will have to write it down and you want to make an appointment. You mail that to the judge, and the judge will tell you when to come in for your appointment. That's the only way you can get them off your back.” Chicago consumer

Communication difficulties and the legacy of their pasts may make it difficult for consumers to argue their case effectively for permanent independence:

“Usually [guardians] have a narrow picture of what you're able to do, and if you start talking to them and telling them what you think you should be able to do as independent, they don't respond back…[They say] you can't handle your money or you can't do this or you can't do that, so why should I work with you to end that guardianship?” Chicago consumer

“If you can't read… they'll give you a Dick and Jane book or you do your math one-on- one but they won't give us what we want to do. I want to go to school to

111

be a therapist for back rubs and stuff. I call the park district; they never call me back because my mom said I was mentally challenged, and they won't call me back now because of that.” Downstate consumer

“That's the part that's hard. Because we've all got dreams and things we want to try to accomplish with our lives because we have labels on there. People automatically take us and shove us in the corner somewhere.” Downstate consumer

IV. Findings: Family Members

“I live in Springfield; I have a developmentally disabled son. My wife and I have been co-guardian since 1980 and, it was a very easy process for us at the time…We got an attorney and became co-guardians of our son.” Springfield family member

“I’m trying to prevent guardianship for my niece…Her mother is very controlling and…she has attempted to get guardianship…and she’s incurred lots of abuse that no one picked up on or cared to look at the groups that were helping her, and it’s really a sad case…If none of us had ever stepped in to help her, mother would have guardianship and be able to do whatever she cares to do with her.” Springfield family member

“We actually relocated after many years of searching for placements. He is brain injured; our son has severe behavior involvement. We’ve been at community placements and he’s been let go just to go home. But when he turned 21, we needed to have an adult facility, so we looked across the country and decided that Illinois was the most enlightened state about having state-operated facilities. And I put our lives back together around him. So guardianship was very important. We’re very protective of his placement, of the things we know he needs, and we know that they are constantly in jeopardy, so we’re very watchful and advocate for his services very strenuously.” Springfield family member

“I was guardian for a great aunt and uncle…and I did that just about four years. I got too involved. I kind of got pushed into it by the social worker.” Chicago family member

“We’ve got a son who’s 41 years old with mental and physical disabilities and we got guardianship for him a few years ago when he went into a group home.” Chicago family member

“My father-in-law became incompetent a number of years ago, totally incompetent and we had to go to court and get guardianship for him. Then my wife’s younger sister became guardian for him.” Chicago family member

112

“When my severely retarded son turned 18, someone asked me if I filed for guardianship. I think people need to be made more aware that guardianship is not automatic in these cases. Parents should know this so they can do this the right way.” Chicago family member

“I’m not a guardian. We’re in the midst of [applying for guardianship] right now. We’re doing it out of commitment for a person who needs an advocate on their behalf. The State is not an adequate advocate.” Chicago family member

1. Reasons for guardianship

“I think it means standing in the place of that individual when you must and to the extent that you must. And making the appropriate, the best, decision for the individual. In other words, trying to restrict or define his life, but only to make those decisions which are in his best interest.” Springfield family member

“It’s managing the affairs of one who, because of his disability, is unable to manage his own affairs. But when one is able to manage his own affairs with help, which is the case when we’re dealing with somebody who only has physical problems, then the law in Illinois is pretty clear on that. If the person would be able to manage his own affairs with help, then a guardianship is inappropriate. Physical disability is not supposed to be a basis for a guardianship.” Springfield family member

“My primary role is to be a voice for the person who cannot make his own decisions. Therefore, I make decisions as if I were the person.” Chicago family member

“To watch out for family dynamics, which can turn into too much control of theperson, rather than support of the person’s needs.” Chicago family member

2. Experiences with the process

“Our son turned 18, and we realized that we needed to apply for guardianship for him… that we didn’t automatically have it, even though we are his parents.”Chicago family member

“I had to scream at the top of my lungs in letters and on phones, numerous phone calls, to get anyone to even hear me. Nothing against lawyers, but dollar signs were the majority of their motivation…The groups that are in place for the handicapped are wonderful…I had to complain several times about what the guardian had given to the court[about] why my niece should be under guardianship. They were going to let this go through until I picked it apart and presented it in a letter to the Chief Justice. Now they’ve got it on hold and hearing--I mean they are finally slowing it down and taking a good look. But this

113

is what one person had to do to get the wrong kind of guardianship to stop.” Springfield family member

“For people who are extremely vulnerable like our children, we feel that they’re in the safest environment in an institution because your guardian can’t be there 24 hours a day. When we walk out the door we want to know that that individual is safe.” Springfield family member

“My experience in obtaining guardianship was very positive. We had an attorney for our agency, and he did all the paperwork and he charged me -- and this was 19 years ago, so

I’m talking from memory, it seemed to me like $175 plus court costs.” Springfield family member

“I have mixed emotions about the experience. I went through a place that handles guardianship issues. Nice enough people, but we didn’t get much help from them. We had an attorney…The guy’s a peach. He does everything by the book down to the last detail. When my great uncle’s nephew applied for guardianship, my attorney had to prove that my great uncle was not being mistreated. He had answers to almost everything.” Chicago family member

“Our son was being moved into a group home, and we did not have guardianship for him. We applied for guardianship for his protection.” Chicago family member

“It was very good. We found that prices for filing for guardianship ranged from$300 - $1000 for doing the same thing. We did find a young attorney, and our group [Parents and Friends of Ludeman] applied in groups of 10 [to save on costs]. You have to pay for someone to come out to Ludeman and read rights to the child. I think it’s a good idea.” Chicago family member

“As I am going through it right now, I feel it could be streamlined. It can be a lengthy process.” Chicago family member

“Ours was not a typical case. We went to court. It went right through. The only question we were asked was why we wanted guardianship.” Chicago family member

3. Needs of the family members

“Expertise, good lawyer.” Chicago family member

“Have an attorney who is well versed in all aspects of the guardianship process.

114

Some of the social service agencies are of little help in the process.” Chicago family member“I want to make sure that my son gets proper care and good services in his residential program and in the vocational program that he’s in.” Chicago family member

“It would be very helpful if parents…and other family members or people who are going to assume the guardianship role could be educated [first] in terms of the need to get guardianship. Some people, as you said, didn’t realize how important it was until you heard what could happen when it happened. Secondly, that they would learn that there are different types of guardianships, limited and plenary…so that you only get the kind of guardianship the individual needs, not more and not less. Thirdly, you would get what a lot of people don’t know is that they have the option, the opportunity to have residential decision-making incorporated into their guardianship.” Springfield family member

“Down in Southern Illinois, the Office of State Guardian used to conduct courses for all of the 30 counties in Illinois where they acquainted the attorneys with a guardianship, how to obtain it, so they could properly serve people…I think a booklet like that[would be useful], written in plain language for lay people [ who] could be fully informed about what guardianship is, how to obtain it, what some of the provisions are in an order that they would want to have, so they know what they’re undertaking, what they should be looking for.” Springfield family member

“And education available for parents because I think what we’re afraid of is that it’s going to become kind of a professionalized field where you have to be certified to be a guardian and only the people who are holding some kind of a state position or are granted money to go to this school [can] become certified.” Springfield family member “I think the one thing that’s disturbed me over the years in my contact with parents is that some parents have the attitude that the state’s going to take care of my child from now on and [the parents] lose interest. I’m concerned about the state guardianship system. Their case loads are way too high.” Springfield family member

4. Needs of the wards

Participants in both groups were asked how well the current system was meeting their family member’s needs, and what those needs were.

“[The] first need is safety. That’s essential for all other things to exist or be available to them -- education, recreation, practice of their faith, work, if that’s appropriate…In our circumstance I think it’s actually meeting his needs very well.” Springfield family member

115

“Respect for the rights of the client, so that decisions are made in their best interest.” Chicago family member

“Protection of the ward.” Chicago family member

“Well in some cases I think they [have been] met. It’s been a struggle. For instance, my son has been diagnosed as having autistic traits for several years…he likes office work and they kept trying to find something for him to do…But finally we found him a job in the community where he works one hour a day, and he’s been on it steady since February, and that is meeting a need. But it took a lot of soul searching and a lot of arm twisting and a lot of work to get it done.” Springfield family member

“My son is severely retarded. He had to be pulled off all medications. Our son had to be admitted to the psychiatric unit of the hospital. He is incapable of admitting himself. Neither my husband or I could admit him, nor could the staff. He could only be admitted voluntarily by the court. He was kept in the hospital involuntarily for ten days. Our son received fine care in the hospital. It is the legal portion that makes no sense to me. It is the guardianship rules that make no sense. This boy, in no way, could make any decisions.” Chicago family member

“Many times there is too much control of the clients, rather than support for their needs.” Chicago family member

5. Recommendations for improving the guardianship system

Participants in both Chicago and Springfield had no shortage of suggestions for improving the process. Some respondents felt that the present system was working adequately, while others felt that major changes were needed in the system.

“Maybe for us it’s different. The process is easy. It is good that there isa report to the court on an annual basis. I think it is necessary.” Chicago family member

“I was placed in a group where many parents became guardians. There has to be something for people to be able to afford [the application process].” Chicago family member

“They need to find ways to tighten up the possibilities of somebody ripping the people off. There are so many loopholes. The court doesn’t always follow up with people who are under guardianship care. Anyone willing to do this endeavor is making a big sacrifice.” Chicago family member

“I understand that several attorneys say you don’t need an attorney for the

116

process. Cost is an issue [for people]. To be able to have a group that’s established to provide education would be helpful.” Chicago family member

Chicago family members discussed the need for improved education about the entire guardianship process.

“More education of judges is needed.” Chicago family member

“ Judges need to understand their role better. If money is available, the system is there. If money’s not available, the judge assumes the guardian makes the best decision. If the judge could better assess the situation where there’s no money involved, as well as when there’s money involved, it would help improve things.”Chicago family member

“It is good that it’s required that there’s a report to the court. I think it’s necessary.” Chicago family member

“Support among people who have gone through the process is important. This includes group support, emotional support, and education.” Chicago family member

“A networking system for guardians is needed.” Chicago family member

“More education of guardians. Have a place to go that describes the process.”Chicago family member

When asked who should be providing the education about guardianship, Chicago participants mentioned the Cook County Public Defender as one possible source. Having a website was cited as another option. One participant mentioned that one of the parent care groups issue a three- ring binder on guardianship issues. Schools and support groups were listed as other alternatives.

“There needs to be a class on guardianship, like what is done for traffic school.”Chicago family member

“The court system should issue a pamphlet or brochure on the guardianship process.” Chicago family member

“Schools should give information [for persons turning 18].” Chicago family member

“Education about the guardianship process has to be understandable by the family.” Chicago family member

117

Respondents raised the issue of the welfare of the person for whom guardianship is being sought. Some participants in both groups discussed the issue of professional guardians and questioned the validity of their motives.

“The plan for the person needing guardianship should be included in theprocess.” Chicago family member

“The only thing I’d be concerned about is the legitimacy of guardians. I understand that there’s an organization seeking out guardianship. I question their motives. The courts need to examine people who apply for guardianship to make sure they are qualified. They need to determine that the motives of the person applying for guardianship are the best for the client.” Chicago family member

“That the law continue to provide that family members be notified when apetition for guardianship has been made for an individual in sufficient time for them to respond by seeking guardianship themselves.” Springfield family member

V. Findings: Service Providers

1. Experiences with guardianship

Chicago area service providers represented a variety of organizations, including hospitals, social service agencies, and organizations dealing with specific illnesses. Exposure to the guardianship process ranged from limited knowledge of the system to dealing with it on a regular basis.

Springfield participants came from a much larger geographic area. Participants represented hospitals, social service agencies, and facilities for mentally and physically disabled, and a state department dealing with the elderly. Exposure to the guardianship process ranged from having some knowledge of the system to dealing with it on a regular basis.

Participants described their experiences as follows:

“The need is rising every day. I see clients on a regular basis, whereas before it was probably once or twice a year. Now I’m seeing three or four people every six months who could potentially benefit from guardianship services.” Chicago service provider

“I deal mainly with the Latino community in Chicago. We work, as you understand, with people with epilepsy. My concern with regard to guardianship is not predominant in my community, but it does come up and it’s not because of epilepsy. It’s due to some other complicating health matter. It could be Alzheimer’s disease or something of that nature, mental retardation, and so on.

118

It’s a very hard concept for the Latino community to accept. So far I’ve not gotten anyone to recognize the need for guardianship.” Chicago service provider

“I’m the only social worker in the hospital on the geriatric unit, and guardianship is a big issue for geriatrics with dementia and inability to make decisions.” Springfield service provider

“I work with Catholic Charities. I do guardianship work for 41 elderly developmentally disabled and mentally ill individuals. And we only take people where there are no family or anyone else to accept guardianship. We also have a program that actually does the court process, taking people through the court process to get guardianship for their family member or for a person in need.” Springfield service provider

“We have people that come into the hospital that cannot make decisions for themselves and no family available, or there is family available but we can’t discharge the patient, we can’t do anything with them until they’re sent a decision about guardianship.” Springfield service provider

“I service five counties and deal with persons that are 85 years or older that have no family. And I’m in court on a weekly basis for guardianship, either for continuing the guardianship or applying for emergency service.” Springfield service provider

2. Goals of the system

Participants in Chicago and Springfield discussed what they felt the goals of the guardianship system should be. Not surprisingly, safety of the client was mentioned regularly.

“Medical safety too…The guardian usually makes sure medications are bought, medications are given, those types of things.” Chicago service provider

“I would see a key goal as assuring that someone was making life decisions based on competent, sound advice being provided to them.” Springfield service provider

“Guaranteeing the safety and long-term security of the individual.” Springfield service provider

“That the senior doesn’t remain in an abusive situation. When they’re not capable of making their own decisions and, you know, there’s been not even anappointed caregiver but an informal caregiver…It’s oftentimes children that are making very, very bad decisions for this person. I mean you need a substitutedecision-maker just for the personal safety of it.” Chicago service provider

119

“Funding for their treatment…One of the things that I see a lot, as far as improving the quality of life, is improving the budgeting of available money the client has. That seems to be a very large issue because even if the person isn’t getting a lot of money, whether it’s benefits or family donations or whatever it is, even if it’s not a great deal of money, how you budget it is truly indicative of how your life is going to be.” Chicago service provider

“And generally if we’re advocating for guardianship it’s because there’s a situation, like you know the person has given all their money away or there’s something going on.” Springfield service provider

Social services professionals who work with guardianship issues expressed a need for clearer guidelines for staff to make referrals, as described in the following comments.

“I would say a goal would be to develop clear guidelines for staff, line staff, who are working with these individuals on how to make referrals for guardianship, and also more education maybe for the general public on this.” Chicago service provider

“If we’re going to have clear guidelines and staff are going to be able to refer, we need to have someone to finance that, and it’s got to be on a state or federallevel because it surely doesn’t exist in the not-for-profit agencies.” Chicago service provider

Participants also were in agreement that more education on the guardianship process was needed for the general public.

“I think one of the goals should be to have ongoing education about the system. It seems like there’s always a big buzz about a new system…They used to have ongoing education and pamphlets and information open to everybody about what it is and how it works.” Chicago service provider

“I think [what is needed is] ongoing education for the judges, the elder law attorneys, the social service providers, and even for the clients about guardianship and…[about] how the system has changed, what the goals are…not just the goals but what the actual process is like and how to better the process…I would say we should get all the players together: the lawyers, the social workers, the consumer, family members, representatives, so we can redevelop the policies and look at all that. Because now it’s just too piecemeal.” Chicago service provider

Access to resources was another issue that focus group participants felt should be considered a goal of the guardianship system.

120

“Our biggest concern has been trying to utilize the court systems with very little resources in terms of money and trying to identify a process that would allowfamilies to utilize that structured process without an attorney.” Springfield service provider

Another goal that was discussed was for sound decisions to be made for their clients.

“We serve persons with developmental disabilities, so I would see a key goalas assuring that someone was making life decisions based on competent, soundadvice being provided to him.” Springfield service provider

“The need to facilitate appropriate planning and for a facilitated access to appropriate resources and planning.” Springfield service provider

When guardianship should NOT be used as an option was also discussed, as described by a social services representative.

“We help families get guardianship, but we also discourage guardianship if we feel like the individual can make decisions by themselves.” Springfield service provider

3. How the present system is working

“We have clients who have been on the waiting list for years and who are in need of a guardianship, and the families don’t have money.” Springfield service provider

Many expressed frustrations with their experience in court with judges.

“We have judges that are just giving guardianship to families because they don’t like what their family member’s decision is. You know the person wants to live in an apartment on their own and get a job in the community. The family doesn’t want them to do that, so family goes for guardianship and the person is trapped.” Springfield service provider “We’re having the opposite problem. We just had a situation where a judge took guardianship away from someone because the town didn’t like the decisions the first guardian was making.” Springfield service provider

“If you go to a small county where there’s one or two judges in the whole courthouse that don’t see guardianship cases very much, they may go through every little piece of paperwork and documentation that you have and it may take a long time. Or they just don’t even care.” Springfield service provider

“A judge listens to certain individuals in the community, and I don’t know if there’s a legal aspect that he should actually take into consideration when

121

looking at the process. But we know that where we are we have difficulty getting a judge to hear it. He thinks that it’s not nearly as important as the criminal cases that he’s hearing. So we don’t get much assistance from them.” Springfield service provider“If we have a person who is living in a condemned home and is being abused by someone coming in and out of that house and we make someone the guardian, we get through the process; they become the guardian. If that little old lady doesn’t want to leave that house, that guardian can not make her go to the nursing home…So the guardianship system for those kinds of cases, we don’t even bother anymore. Because the judge is going to look right at them and say if she doesn’t want to go to the nursing home you can’t make her fix that situation. And yet, we’re back to there’s not money to fix that situation.” Chicago service provider

“And we had a situation where the judge was making really good decisions, and then got a call from another judge who lived in the town with this person, and there was an uproar, so all of a sudden his decision was changed.”Springfield service provider

It should be noted that not all participants had problems with judges, as described by one downstate participant.

“In our county the judge is very much up on guardianship issues, and he’s very familiar with our program. He knows we take a very conservative approach, and he’s helped out tremendously. And he hears cases very fairly, and he takes avery open mind about all the issues that have come before him. So he’s a verygood judge and we work well with him.” Springfield service provider

Another issue brought up by members of the Chicago group was that many guardians ad litem were untrained to assess a person’s mental status.

“Should the guardian ad litem be an attorney or should the guardian ad litem be a case manager? Because you’re assessing a person’s mental status, you have a lawyer going out to assess a mental status, and I don’t know whether they’re trained at all to do that.” Chicago service provider

Chicago participants also gave examples of clients under guardianship that need to be monitored and reevaluated on a periodic basis.

“I guess my concern is they’re worried about the money -- but for the people who have guardianship of the person, they don’t even ask what are you doing to make sure that this person is getting the services they need, the treatment they need, what are you doing as the guardian to make sure that they’re making it to their appointments, that they’re getting follow-up. We’re just worried about the money, you know. They figure the guardian had to go to so much trouble to get it that they must be wonderful people.” Chicago service provider

122

“The advice that I would give is that as my clients age and improve and get independent living services and mental services and all the services they need, nobody asks them about their guardian. I have a couple of clients that are going to be coming to your client’s focus group. I have a client that works full-time here in the city, downtown, runs his own life. I had to call his mom to ask if he could participate in this. He’s a full functioning member of society and yet cannot make his own decisions, and his mom doesn’t even live in the state. She’s not really aware of the extent to which he’s improved and the extent to which he’s able to manage his life.” Chicago service provider

“I would say that there needs to be a review of cases even if it’s on an annual basis or every two years that involves the clients.” Chicago service provider

Participants in both groups stressed the need for temporary or limited guardianships as an alternative to plenary guardianships.

“Some people clearly need a guardian; it’s very clear. Others may need assistance in other areas and not full guardianship. And I’m wondering about the whole issue of a limited guardianship.” Springfield service provider

“Many of the people that we petition for at the hospital don’t go for guardian of the estate. They don’t have money. But you know the only way that the hospital is willing to pay the bill…is to get somebody a guardian in order to get them placed, even a temporary guardian to get them placed legally than to keep them at the hospital for an indefinite period of time, and we end up eating some of the costs.”

Springfield service provider

Participants in the Chicago group described some of the issues regarding state-appointed guardians.

“I think the same thing can be said for state-appointed guardians. In the particular nursing home that my program is in, I’ve been there three years andwe’ve had three different guardians, and we don’t always know when they’re going to change. They just kind of show up and say, “Hi, I’m the new guardian.” And they have not only the whole nursing home for all the state-appointed guardians, they get all of those residents, plus then they have a whole geographic area that they have. So these poor folks don’t have an ice cube’s chance. I mean they’ve got so many people that they’ve got to be overseeing the treatment for. I don’t see how there’s enough hours in the days to even know all of the little service type referrals that are happening.”Chicago service provider

“We have a wonderful state guardian in the county that they really get good response from. They’re just overworked; they have a caseload of 120 to 1 ratio

123

and just can’t respond. Sometimes they have to deal with them more as emergency cases. So the ones that aren’t an emergency just kind of get set aside…for years.” Springfield service provider

“The Office of State Guardian, the Office of Public Guardian, they’re always viewed as the last resort. I use them when I have an elderly person who’s being abused or even one that’s being somewhat neglected because the person really doesn’t understand. I have a lot of mentally ill adult children or developmentally disabled adult children. They don’t know how to take care of this person. I have no option [other than] for a State Guardian. But they’re going no, no, no, you have a family member. And I’m going no, I don’t. And they’re going yes, you do. And so we’re in the middle of court arguing over whether or not they should be the guardian. And in the meantime the senior is sitting there because the Office of Public Guardian is going no, if you have a family member, we’re not the option…and just the cost of going through the guardianship process alone for that family member whether they’re really interested in being the guardian or not, a lot of times that amount of money is just cost-prohibitive for them…” Chicago service provider

“I just had a case with a domestic violence situation with a gun and an Alzheimer’s patient in there who didn’t even know this was happening. Could have been killed in an instant, and I’m asking for the Office of Public Guardian to be the guardian and put this lady in the nursing home. She doesn’t know where she is. The judge is going no, no, no, according to probate law she has the right to remain in her home…They gave guardianship to the Office of Public Guardian, but they kept her in the home. I’m, like, you didn’t help me any, but that’s what the probate law says. The last resort is to take them out of the community. The last resort is to give them a guardian…and the probate law in my estimation is where we begin with the problem from social service standpoint. It is numerous times not the last resort.” Chicago service provider

Participants discussed the length of time to obtain guardianship as a problem with the present system.

“We just did one last week -- it took us six days…that wasn’t too bad.” Chicago service provider

“For example, I petition and ask the Office of the Public Guardian to be the guardian for an elderly person, and the elderly person is contesting, and then there’s an abuser contesting; everybody gets to present all of their witnesses and why they feel their position is the appropriate one. And people come in and continue and then another lawyer comes in and continues, and, you know, we’ve had them go on for a year once it goes to hearing. Now if somebody is going in there, and there’s nobody to contest it and the senior is out of it enough that they don’t know what’s going on, it can go relatively quickly if the person has the finances to take the step. Sometimes they have to wait to bring about some more

124

money to go to the next step. And so, you know, that can happen relatively quickly over a few weeks, but it depends on the financial status of the person petitioning.” Chicago service provider

Another issue that was brought up was the needs of children who will be turning 18 years of age, and the need to educate parents on applying for guardianship for that child. Many times parents automatically assume they are the legal guardians after the child turns 18, which is only the case if they go before the court to get guardianship.

“When the child turns 17, the school district says…that in one year your child will turn 18; they will be their own legal guardian; you should start thinking about what you plan on doing about that.” Springfield service provider

“I found when I talk to parents about guardianship, they look at me like ‘well sure’; they assume, they don’t realize when their child turns 18, they’ll be making their own decisions. I’ve got a daughter with Down’s Syndrome. I’m sorry, I mean in a way it’s like you don’t want to think your child isn’t capable, but the reality strikes.” Springfield service provider

In general, both Chicago and Springfield participants mentioned the need for clarification of how the guardianship process works.

“Clarifying and consistency. Clarify the process and consistently adhere to the process.” Chicago service provider

“Knowing the laws is one thing, but knowing their rights under the laws is something else.” Springfield service provider

Members of both groups brought up having sufficient funds for the entire process, as well as alternatives to the process.

“[We need] more money for community support systems so that you can circumvent the need for guardianship.” Springfield service provider

“You talked about the lack of community resources. We never really touched on the healthcare surrogate for folks that need medical care and who are thereto make that kind of decision. You don’t need a guardian for that, but you do need someone in there perhaps helping with some kind of medical decisions.”Springfield service provider

“Also supporting innovative programs and duplicating them such as [the one at] Catholic Charities.” Springfield service provider

4. Monetary costs of guardianship

Cost factors in the guardianship process were brought up in both groups as a major issue. This included the cost to file for guardianship, whether for the family or for the agency.

125

Other costs included lack of funds for social workers and other professionals to work on cases, as described below.

“We try to secure guardianship when we need to, and we have the same issues in terms of trying to find money to pay for the guardianship process.” Springfield service provider

“We need to have someone to finance that, and it’s got to be on a state or federal level because it surely doesn’t exist in the not- for- profit agencies.” Chicago service provider

Springfield participants mentioned the problem of the not-for-profit organizations finding funds to pay for the guardianship as well as finding funds to pay for an attorney to take the case.

“The problem with speed becomes more evident when there’s no one to pay for the guardianship because…I’m at a not-for-profit hospital and getting my administration to authorize $800, $2,000 is not easy because we would be paying that completely out of non-existent profit.” Springfield service provider

“In terms of the public sector, I think probably what takes us the longest is tofigure out how to get the money to pay for it and then find the attorney who willdo the case.” Springfield service provider

Getting the court to respond to the need for guardianship in some cases was also mentioned as a problem, as described below.

“I had met a client in her 70s [with] two daughters. She had a history of mental illness, psychosis. The daughters went to court. I believe [they] spent close to $4,000 in attempting to get guardianship because the patient was medication noncompliant. She’d go halfway across the country, be sitting in a room with ketchup as her only food source because she had taken that from the local McDonalds. The family was denied guardianship because the patient took medication to go to the hearing [and spoke clearly] but is [often] medication non-compliant. So that’s a problem that I see, that I run into. I’ve got children of older adults crying, saying ‘what do I do?’ They’re [the client’s] going to kill themselves; they’re placing themselves at risk. In a court system that says, ’Well, they appear to be all right to me’...I understand the courts are protecting their rights to make their own decisions. The pendulum just seems to have swung a little too far in a life-threatening situation.” Springfield service provider

“The one thing that hasn’t been mentioned is that some of the cases that we’vehad where the person is physically disabled, you had that judge make a decision for guardianship based on the physical disability, even though the person knows what they want, knows everything--but is unable to [physically] go to court and the judge did not take the deposition…how they [the petitioner] were saying that

126

the person had money to give the nursing home $60 a day for a month - incredible kinds of things go on, you just can’t understand how it’s a part of our process.” Springfield service provider

“[The Public Guardian] is an appointed position, political appointment. They do not have to know anything…the one in Washington County is a contractor.”


“There’s no training, there are no guidelines, there is no supervision of the county guardians.” Springfield service provider

“We just did a contested guardianship with an abuser, and the end bill was $28,000. I mean that was a person fighting us on the situation. And one where we just go through, nobody’s fighting us except for the senior themselves saying, ‘I don’t want a guardian,’ and they have the right to contest. Those [cases] are running us between seven and eight thousand dollars.” Chicago service provider

“…But now he takes contested cases much more seriously, which is great, but it has driven up our costs four times for the petitioner-- instead of it costing $800 it costs $2,000, and that’s been a huge problem for us. So a lot of people who we thought needed guardianship, they haven’t gotten it.” Springfield service provider

“There’s some great private agencies that handle guardianship cases. They’re wonderful people, they get the job done, but their fee is quite a bit, too.” Chicago service provider

“And just the cost of going through the guardianship process alone for that family member, whether they’re really interested in being the guardian or not, a lot of times that amount of money is just cost-prohibitive for them; they can’t do it.” Chicago service provider

Springfield participants discussed problems with the cost involved in designating a successor guardian.

“I think they could make it easier in terms of once guardianship has been established to transfer it over without it costing again and going through thewhole process…identify someone. Even if it was just a paper filing…that would be more affordable.” Springfield service provider

“The case managers are not given a lot of authority right now…they’re told to do a certain job, but they don’t have the guardianship status…or we have case loads of 200 people…Case managers are usually the least paid people on the tier of services.” Chicago service provider

127

Participants in Chicago and Springfield both stressed that more money was needed to fund the entire process.

“From my viewpoint, it was down to money. We have to figure out where themoney is going to come from to do these things.” Springfield service provider

5. Differences between Cook County and downstate Illinois

“There are 102 county guardians doing it 102 different ways. Some were appointed with a plaque hanging in their den at home.” Springfield service provider

“It varies from county to county; I have five counties. Most of my guardianship is in St. Clair County because that covers the Metro East [St. Louis], my most popular area. And of course I work with them, like I said, on a weekly basis. So I have a greater success.” Springfield service provider

“We need to standardize it, and we need to get some help either through the counties or the state because otherwise it’s still going to be piecemeal. You’re talking to a group that’s dealt with all the problem cases.” Springfield service provider

6. Knowledge of the system

Both groups of service providers reported that knowledge of the guardianship process varied greatly, not only among family members, but among attorneys and judges as well. Elder law attorneys were ranked as being most knowledgeable, albeit expensive.

One state agency employee brought up the need for more money to fund guardianships as an alternative to placing clients in nursing homes.

“A terrible situation, not only for the mentally ill, but also for the elderly, is that there are not any resources out there for them to take care of these people…these people that we have in the nursing home, they don’t need to be there. And it’s costing you and I tax dollars to keep them there where it would be cheaper to maintain them in the community with a good guardianship.” Springfield service provider

Springfield participants mentioned that people learn about the guardianship process through school districts, support groups, self-help groups, and parent groups.

“The elder law attorneys I work with…I think are excellent. They cost an arm and a leg, that’s part of the problem, but they’re good at what they do. But the probate judges, I don’t think they have a clue as to what’s happening in our worlds when they’re making decisions.” Chicago service provider

128

“For the family members that go ahead and navigate this whole thing and become guardians, they’re pretty much left on their own to navigate the whole thing and sign off on things…The system isn’t really supporting the people that have said, ‘okay, fine, I’ll be the person to be the guardian.’ They’re just tossed out there to sink or swim.” Chicago service provider

7. Length of the process

Participants reported that the time it took for a court to grant guardianship varied greatly by circumstances of the case.

[Emergency temporary guardianship] “We just did one last week, it took us six days.” Chicago service provider

“We have success working fairly quickly…usually within a week.” Springfield service provider

“Most of the judges are adhering to the law that there has to be a hearing within 30 days for the final decision.” Springfield service provider

“It depends if it’s contested. If it’s contested, it goes to hearing. I’ve had hearings last for a year.” Chicago service provider

“One reason that I can think of that guardianship is so quick is because I am available under the Elder Abuse [and Neglect] Act that says we will have available early intervention money which is included for legal fees. So I can help; I don’t have to go look for the money, I just have to look for the doctor’s statement…” Springfield service provider

8. What changes should be made to improve the guardianship system?

Participants in Springfield and Chicago had no shortage of ideas on how to improve the process.

“Have two processes, one for contested [guardianships] and one for uncontested [guardianships].” Chicago service provider

“…Unless it’s contested; then you have to go to a full-blown hearing and everyone has to testify, and then the judge is wanting a whole lot of information from all sides. But if it’s you’re simply going in, and we did one not too long ago: A gentleman was coming in for a guardianship on his mom who’s 90 years old, living in a senior building. She’s not eating and she’s not taking her medication anymore. He’s the only son and we were in and out in I’d say ten minutes. I mean I didn’t do a lot of work until I physically get her to a doctor, those kinds of

129

things. But for the actual process [it] took a day and he was the guardian.” Chicago service provider

“I would say that there needs to be a review of cases even if it’s annual or every two years and involves the client.” Chicago service provider

“Education, standardization throughout the state…Also supporting innovative programs and duplicating them such as Catholic Charities…getting these people [attorneys] to do pro bono work.” Springfield service provider

“[When the student is] 14, they’re [the school district} mandated to begin their transition process, and we’d like to have a brochure that the school gives to families so that they understand what guardianship is, what the cost is, and if they feel it’s something they’ll need; perhaps that will give them the four to five years just to save.” Springfield service provider

“The brochure would need to outline for them that it’s [guardianship] a last resort.” Springfield service provider

Strengthening the power of attorney process was listed as one alternative to improving the guardianship situation.

“There’s not enough in the power of attorney law to protect people. The power of attorney law…the only recourse would be to sue.” Springfield service provider

“The big difference between a power of attorney and a guardianship is a power of attorney only comes into effect when someone becomes incapable of making their own decisions.” Springfield service provider

Another alternative to the guardianship process was for clients to have a designated representative payee to handle their financial matters.

“A lot of our guardianships...could be handled by a payee and the other services in the community if there was just someone to handle the money. Because you’vegot people who can’t write but do not need a guardian.”


“Well sometimes people just need a payee, a representative payee [for money matters] rather than making all their decisions.” Springfield service provider

“One client we have is living in a group-type setting, and he has a payee to pay his rent and he gets…an allowance. And it seems to be working pretty well for him because he used to spend his money on other stuff and not pay his rent…his bills are getting paid. he’s surviving and he has food and clothing…and he’s capable of taking care of himself, just not the money.” Springfield service provider

130

“My experience [is]…the community mental health centers being the payee. That seems to have worked well for many of the clients that I have…. it ensures that they have some place to live and see that they have food in the house…” Springfield service provider

Although payees were seen as a good alternative to the guardianship process, resources are an issue.

“We’d love to say we’ll get you a representative payee, and we have had to access that far more successfully in the last couple years. But we don’t have the support mechanism in the community that would allow us to utilize that versus getting a guardianship.” Springfield service provider

Assisted living communities where persons (primarily senior citizens) could live were suggested as another alternative to guardianship.

“One of the things the elderly population could benefit from were assisted living communities where Public Aid picked up because that’s going to be a much moreeconomical use of resources preserving dignity and allowing independence.”Springfield service provider

“If there were more money for…structured residential segments where people that live in a community…don’t necessarily need guardians. If they had more support systems, you might be able to do without guardianship for a lot of people.” Springfield service provider

Having qualified personal attendants care for persons needing assistance in daily living activities was seen as another alternative to guardianship.

“If they could just have a PA [personal assistant] or something in their apartment to help them get along outside, they don’t have to be in a nursing home…Springfield service provider

“We have services that provide PAs if they’re qualified, but they’re only allowed up to a maximum nine hours a day.” Springfield service provider

The idea of having Skills Trainers be available to provide living assistance to persons in need instead of guardianship was also discussed.

“We have someone called a skills trainer who goes into the home and helps people…They only work 15 hours a week and only work with so many people in that amount of time.” Springfield service provider

131

Another alternative to guardianship for persons needing mental health services was Assertive Case Management.

“The State has devised what they call linkage case management and assertive case management teams. And the linkage case management team takes a client for three months, tries to get him stabilized, and then hopefully develop that pattern where he doesn’t need case management or refer him to the ACT Team, which takes on responsibility on an ongoing basis. I think for clients who get connected with those, it’s a really good experience for them and really helps their quality of life. And it doesn’t require guardianship status all the time.” Chicago service provider

“However, the state makes it so difficult to get these people in[to ACT] they have to either be hospitalized at a state-operated facility three times within 12 months or for a total of 180 days…Then if you call and say this person meets the criteria, I’d like to get him in the ACT Team.” Chicago service provider

“Assertive Case Management Team and the Linkage Case Management Team…[Individuals with mental illness] can be referred to the teams, and the teams can follow up on them. [The case management teams] really don’t have the right to force any kind of treatment on them.” Chicago service provider

132

Focus Group Discussion Guide CONSUMERS

Set-up Hostess will set up focus group room and observation room with sandwiches and

refreshments. Review of and compliance with all access requirements for handicapped.

Greetings Signage in downstairs and 7th floor lobby. Hostess will greet participants in MCIC lobby, guide them to focus group room

and refreshments. Handwritten name tents with first names only. Hostess will greet observers, secure their signature on release form, and guide

them to observing room. Hostess will orient latecomers and introduce them into the ongoing focus group.

Introduction Thank participants for coming. MCIC is a research consulting firm working in the public interest. Introduce

MCIC staff. Purpose of our meeting today is to gain a better understanding of your views on

guardianship. We’re looking for feedback on what the issues are from your point of view and what kind of changes and improvements you can suggest in the system.

Logistics Session will last about an hour and a half and follow a discussion outline. Restroom locations. Taped session. There will be observers. We ask each of you to sign a release

form. Ground rules: no right or wrong answers; everyone’s opinion is important; active

discussion is encouraged; looking for input from everyone. We ask that you speak from your own experience and how you yourself feel about

things we will be discussing. Please address your comments in the spirit of creative brainstorming and

constructive criticism.

Icebreaker First, tell us a little about yourselves. Where you live, how long you have been in

the area. We’d like to understand things from your perspective. What help or support do

you need in your daily life? We’ll list the needs that you feel you need help and support with. [MODERATOR USES FLIP CHART TO RECORD ANSWERS]

133

Let’s go back and see how these needs can be met as you see it. [FOR EACH ITEM:] What support is available? What would you like to see available? How do you get support? [MODERATOR ANNOTATES CHART]

As you know, our conversation today is about guardianship and the guardianship system in Illinois. What does “guardian” or “guardian system” actually mean to you? [MODERATOR USES FLIP CHART TO RECORD ANSWERS]

What experiences have you had with the guardianship system that you’d like to tell us about? [PROBE: speed of action…protection of your rights…privacy…fairness…]

How satisfied are you with your guardian?

How the Process Works Another way to slice things is in terms of the process, how things actually work.

I’d like to paint a picture of the process of guardianship. How did you learn about guardianship? Do you have a guardian? What was the one most important thing that happened

that led to your having a guardian? Let’s go through the rest of the process step by step. Not all of you may have had

experience with each step. [USE CHART OF PROCESS] [PROBE: Notice of hearing…Access to a lawyer…Experience in court…Experience with a guardian…]

Impact of the System What does the guardian do for you? What else would you like the guardian to do

for you? How satisfied are you with your guardian? What changes or alternatives would you suggest to improve the system?

Close and Thanks Considering all the things we have talked about today, what’s the most important

advice you would give to people interested in improving the public guardianship system?

Thank you very much for your help. Guide participants to bathrooms, reimbursement checks, and paperwork.

Focus Group Discussion Guide FAMILIESSet-up, Greetings, Introduction, and Logistics (see previous section for Consumers)

Icebreaker First, tell us a little about yourselves. Where you live, how long you have been in

the area.

134

As you know, our conversation today is about guardianship and the guardianship system in Illinois. What does “guardian” or “guardian system” actually mean to you? [MODERATOR USES FLIP CHART TO RECORD ANSWERS]

What experiences have you had with the guardianship system that you’d like to tell us about? [PROBE: speed of action…protection of your rights…privacy…fairness…]

Let’s step back for a minute and look at things from a different perspective. You may have a family member or loved one who is frail, disabled, or infirm. What are their major needs? We’ll list the needs that people with disabilities have that you feel require help and support. [MODERATOR USES FLIP CHART TO RECORD ANSWERS]

Let’s go back and see which of these needs are met well by the guardianship system. What other ways can these needs be met? [MODERATOR ANNOTATES CHART]


I’d like us to paint a picture of the process of guardianship. How do people cope with these difficult situations before guardianship is even

considered? How do people learn about guardianship? What are the critical incidents that make guardianship the right option, or is it a

more gradual process? Let’s go through the rest of the process step by step. Not all of you may have

experienced each step. [USE CHART OF PROCESS] [PROBE: Filing the petition…Access to a lawyer…Experience in court…Experience as guardian]

Impact of the System What has been the effect of the situation, the system, and guardianship on you,

yourself? On your family? On the consumer of guardian services? What changes or alternatives would you suggest to improve the system?

Close and Thanks Considering all the things we have talked about today, what’s the most important

advice you would give to people interested in improving the guardianship system? Thank you very much for your help. Guide participants to bathrooms, reimbursement checks, and paperwork.

Focus Group Discussion Guide Service Providers

Greetings, Introduction, and Logistics (see previous section for Consumers)

Icebreaker First, tell us about yourselves. What you do, how you got started in this area.

135

As you know, our conversation today is about guardianship and the guardianship system in Illinois. What do you see as the key goals of the guardianship system? [MODERATOR USES FLIP CHART TO RECORD ANSWERS]

Relating to these goals, what experiences have you had with the guardianship system that you’d like to tell us about? Which of these goals does the system achieve and where does it need work? [PROBE: speed of action…protection of consumer rights…privacy…fairness]

Let’s step back for a minute and look at things from a different perspective. Think about the people you serve. What are the types of problems your clients have? We’ll list the needs that people with disabilities have that you feel require help and support. [MODERATOR USES FLIP CHART TO RECORD ANSWERS]

Let’s go back and see which of these needs are met well by the guardian system. [PROBE: What successes have you had in trying to solve these problems and support your clients?]

What other ways can these needs be met? [MODERATOR ANNOTATES CHART]


I’d like us to paint a picture of the process of guardianship. How do people cope with these difficult situations before guardianship is even

considered? How do people learn about guardianship? When do you think guardianship is needed? Is there a critical incident that makes

guardianship the right option? In what cases do you think a person needs a guardian? What alternatives are there?

How would you describe the process of seeking guardianship? How satisfied are you with the process?

Let’s go through the rest of the process step by step. Not all of you may have had experience with each step. [USE CHART OF PROCESS] [PROBE: Filing the petition…Access to a lawyer…Experience with Guardians ad Litem…Experience in court…Experience as guardian…Experience in withdrawal of guardianship]

Impact of the System What has been the effect of the situation, the system, and guardianship on you as

the service provider? On the person needing the guardian? What changes or alternatives would you suggest to improve the system?

Close and Thanks

Appendix IGUARDIANSHIP REFORM PROJECT

PUBLIC HEARINGS AND TESTIMONY REPORT

INTRODUCTION

136

Several studies and reports released over the past decade, including a comprehensive study by the American Bar Association, have documented deficiencies in guardianship systems throughout the country. Common problems cited include unclear standards for determining decision-making capacity, inadequate due process protections in guardianship proceedings, lack of awareness of alternatives to guardianship, lack of training for individuals serving as guardians, and the failure to monitor guardians in the performance of their duties. Equip for Equality established the Guardianship Reform Project for the purpose of developing a model reform plan for the adult guardianship system in Illinois, focusing upon guardianship of the person.

The Guardianship Reform Project has a Project Director, who is employed by Equip for Equality. The decision making body for the project is an interdisciplinary Task Force composed of 17 members who are experts and leaders in the fields of gerontology, mental and physical disabilities, law, and behavioral health. There is also a Senior Review Board consisting of 15 state legislators and judges, whose purpose is to review the progress of the Task Force and provide guidance, from a judicial and legislative perspective, as to the feasibility of implementing the Task Force recommendations.

At the same time that the Task Force initiated its work, the project began conducting focus groups as part of the process of obtaining viewpoints of people with disabilities, family members, and service providers. A total of six focus groups were conducted in Springfield and Chicago by an independent market research firm.

Public Hearings on guardianship reform in Illinois were held in Springfield, Carbondale, and Chicago. Each hearing was open to the public for a three and a half hour period. To ensure the maximum participation, an integrated publicity campaign was developed by Equip for Equality’s Public Information Director. Posters and flyers were distributed statewide and press releases were sent to the media. Newspaper advertisements were also taken out in each community where the hearings were held.

The first hearing in Springfield was held at the Renaissance Hotel, a centrally located area. Approximately 35 people registered at the hearing and nine people provided oral testimony.

The second hearing, in Carbondale, was held at the Southern Illinois University Law School. At this hearing 53 people registered and 16 people testified.

In Chicago, the final public hearing was held at the Center for Conflict Resolution. This hearing lasted the full duration of the time period with 21 people testifying from an approximate total of 60 attendees.

Each hearing was chaired by representatives from the Task Force and the Senior Review Board. These members listened to the testimony and asked questions of participants as necessary. Background information about the Guardianship Reform Project and a summary of key issues and proposals identified by the Task Force were available to

137

attendees at the registration table. This material was also available and disseminated to those who requested it in advance of the hearings.

In addition to the oral testimony, 12 individuals who were not able to attend a hearing submitted written testimony. Both written and oral testimony was provided by a full spectrum of individuals who represent different constituencies, points of view, and/or personal circumstances. The testimony was often heartfelt and moving as family members or service providers relayed experiences with the guardianship system that has impacted on them in some way.

Most of the testimony falls within the general categories identified by the Task Force as proposed areas of needed reform. These are outlined below.

ASSESSMENT

Task Force Considerations:The goal of assessments for guardianship is to ensure that guardians are appointed only when individuals cannot make or communicate decisions for themselves and that when guardianship is ordered by the courts, its scope is individualized and limited to the extent required by the individual’s actual inability to make or communicate decisions. Among the solutions being considered to improve the quality of the assessment of an individual’s ability to make decisions are: revising the statute to elucidate the decisional basis on which the need for guardianship is to be assessed; expanding the role of the guardian ad litem to better complement the medical report on which a guardianship petition is evaluated; and, developing model medical and guardian ad litem report forms to provide the courts with sufficient relevant information about each prospective ward.

Testimony on Assessment is categorized as follows: Guardian ad litem (GAL), Medical Report, Standards for Guardianship, Standard of Proof, and Court Procedure.

Testimony:

A. Guardian ad Litem:

“Every alleged disabled person should have a guardian ad litem appointed and should have easy access to an attorney to represent them.” Exec. Director, Service of Will, Grundy & Kankakee Counties, Inc.

“…of ultimate importance is: expansion of the role of guardian ad litem. This is the point at which the ultimate good of the individual can be objectively assessed. But, this can only occur if the role is expanded and strengthened…Those selected for the role should have a background and experience in the field of developmental disabilities.” Exec. Director, Seguin Retarded Citizens Assoc., Inc.

“There needs to be an extended waiting period between the filing of the guardianship papers and the court hearing. This would afford the guardian ad litem time to visit the individual with disabilities two or more times – perhaps in a

138

variety of environments – lending greater validity to the entire guardianship process.” Exec. Director, Seguin Retarded Citizens Assoc., Inc.

“The person appointed guardian ad litem should be someone who has training and experience in the area of disability alleged in the petition. Usually attorneys are not the best people to serve as guardian ad litem. AARP recommends that the role of guardian ad litem be opened to other professionals such as social workers. With appropriately developed forms for the GAL report, other professionals could just as easily perform this function.” Representative, AARP

“If the Task Force desires that the use of a guardian ad litems (GAL) should still be a mandatory requirement under the GDA (Guardians for Disabled Adults Act), it is suggested that the duties of the GAL be specifically defined. My recommendation is that GALs not be required. A person charged with being disabled should have the right to an attorney, either selected by the respondent or appointed by the court, if the respondent makes no selection for his own attorney. A GAL could still be used in exceptional cases, such as a possible conflict between a guardian and ward, where the court wishes to have the ward’s rights protected by the GAL.” Attorney

“The proposed expansion of the role of the GAL to improve the quality of the assessment is going entirely in the wrong direction…Some real expertise in the field of aging will be increasingly necessary…Instead of limiting the assessment process to GALs alone, it would be far more appropriate to open assessments up to persons [such as] geriatric care managers, social workers, and nurses.” Director, Services for Disability, Inc.

“The statute was changed a few years ago to include using nonattorneys…I think this was because there were not enough attorneys in the southern part of the state. I think the guardian ad litem should be an attorney.” Attorney

“Changing the name guardian ad litem changes the concept and will affect continuity. Guardian ad litem is also used in legal contexts…but admittedly the term guardian ad litem is confusing.” Attorney

B. Medical Report:

“There needs to be streamlining of the procedure for obtaining a medical evaluation of an individual who refuses to be examined and better clarification of the circumstances where involuntary evaluation is and is not necessary.” Case Coordinators, Senior Services of Central IL Inc.

“There should be a standardized and independent system of screening persons on their need for a guardian.” Exec. Dir., Service of Will, Grundy & Kankakee Counties, Inc.

“I understand the court’s emphasis on the opinions of physicians, but I believe that medical opinions are given too much weight. I feel the court should begin to consider the opinions of job coaches and vocational rehabilitation and training workers as having equal weight with opinions of physicians. In most instances the physician who submits a report in support of a guardianship petition has only seen the alleged disabled person on one occasion [as opposed to rehab workers]. After

139

all, guardianship is supposed to encourage the growth and development of the disabled person – not stunt it.” Attorney

“Vocational and other professionals involved with the individual should be involved in the assessment process and giving input.” Attorney

“There is some confusion under current law about who has the authority to obtain information regarding and assistance for individuals in situations who are unable to communicate their needs due to mental or physical conditions…The situation needs to be clarified to avoid conflict between agencies.”

Case Coordinators, Senior Services of Central IL Inc. “The current physician report has served people very well…There is the occasion

when the doctor doesn’t complete the report fully – the court then has the option of asking for more information.” Attorney

“Respondents should not be subjected to mental evaluations without a prior court order authorizing such mental examinations. The respondent has the right to counsel and due warning of his right to remain silent during such an examination.” Attorney

C. Standards for Guardianship:

“Guardianship in any form should always be reserved for use in cases only where it is absolutely necessary, and then the most limited form of guardianship appropriate to the person.” Chief, Bureau of Elder Rights, Illinois Dept. on Aging

“Guardianship must be based on a careful functional evaluation that addresses the need to balance protection and autonomous dignity of the person alleged to be incapacitated. Guardianships should not be established when guardianship cannot benefit or protect the individual.” Managing Administrator, Office of State Guardian

“[There should be] a shift from primarily adjudicating persons totally disabled when a limited guardian would be more appropriate.” Attorney

“The current definition of ‘disabled person’ could be clearer…The manner in which the definition is currently drafted makes it difficult for an alleged incapacitated person to defend the action…[and] makes it difficult for the court to appoint a limited guardianship. Therefore, AARP recommends that the Task Force consider a functional definition of ‘disabled person’ in which the person has a determined physical or mental impairment that causes an inability to provide for personal needs or property management, and as a result is likely to suffer harm. Guardians should only be appointed if there is potential harm to the alleged disabled person. In Illinois, it seems we use a process that tries to reach that result, but because of the present definition, it makes it difficult.” Representative, AARP

“I refer people to guardianship who can’t make decisions – most are indigent and don’t have any family.” Case Coordinators, Southern IL Case Coordination Services

“When you say ‘reform guardianship’ to us…we worry that [it] means making it more difficult to get guardianship, or that guardianships we have may be challenged…” Parents of Son with Developmental Disabilities

140

D. Standard of Proof:

“There ought to be a standard of proof of at least ‘clear and convincing’ [to adjudicate a person disabled] to meet US and IL Constitutional requirements…” Attorney

“The burden of proof in guardianship proceedings is clear and convincing evidence. Somewhere that should be made clear. You should not be able to strip a person of their rights ‘by a preponderance of evidence.’ ” Attorney

“It is incongruous that restoration under the Guardians for Disabled Adults Act (GDA) expressly requires the ward to prove the right to restoration by a burden of proof of a ‘clear and convincing’ standard. The GDA permits adjudication of total disability by a ‘preponderance of evidence’ standard. Proving disability ought to require ‘clear and convincing’ evidence, and a restoration of full capacity should be permitted with proof by a ‘preponderance of evidence.’ ” Attorney

“Many disabled people need some kind of assistance but do not need a guardian. Disabled people are still not accepted or treated as full human beings. People even have a hard time looking disabled people in the eye when they’re talking. They want to be full members of the community.” Disabilities Advocate/Consumer

E. Court Procedure

“Requiring all respondents to be represented by counsel, requiring the presence of the respondent, requiring the person evaluating the respondent, and recommending a guardian to be present in court and subject to examination…[provides] a better record to support the court’s determination than the secondhand hearsay report of a guardian ad litem.” Attorney

“It is fundamental that at the hearing of any person charged with being totally disabled and subject to a guardian…[the person] be present at the hearing unless his/her absence is excused for good cause…” Attorney

“There is a problem with the term change from ‘disabled’ to ‘decisionally impaired.’ Disabled is a legal term used with Social Security, the ADA, insurance, housing for the disabled, and other entitlements – nowhere is it mentioned ‘decisionally impaired.’ Doctors are asked to respond to a prospective disabled person using specific guidelines – by changing the terminology, certain protections could be taken away for the person.”Attorney, Office of Public Guardian

MONITORING OF GUARDIANSHIP

Task Force Considerations:

The goal is to create an effective system to monitor guardianships so as to ensure that wards are receiving all the services they need and that there has been no change in the ward’s condition that necessitates revising the original court order. Proposals being considered by the Task Force include requiring an Initial Guardianship Plan and an

141

Annual Report, and recommending a pilot project for testing the efficacy of various types of monitoring systems to be implemented in Illinois.

Testimony:

“[In our community] there needs to be a monitoring system established.” Senior Services Supervisor, Catholic Charities of Decatur

“Monitoring of guardianships should come from the legal system. Guardianship is always a legal process and, if mismanaged, the solution to mismanagement or abuse is found in the courts.” Managing Administrator, Office of State Guardian

“[In some courts] cases were still open for wards who were deceased or no longer in the state…The lack of monitoring by the court prevented such detection. If the court is not providing the oversight, the system fails.” Representative, AARP

“We would also like to see the court system enforce the rules that are in place. In many instances it is the guardian themselves that are abusing our seniors. Although guardians are required to file an annual financial statement with the court, our experience shows that this is not being completed. The court system is not monitoring itself in this regard. Each county should be mandated to appoint an official whose job specifically includes annual follow-up on all guardians once they are appointed.” Exec. Director, Midland Area Agency on Aging

“The system has lost sight of the people it’s supposed to protect.” Attorney “Monitoring is an excellent idea. This doesn’t need to be [done by] an attorney.”

Attorney “Guardianships should be terminated and the person with the legal incapacity

fully restored when the need for the protection provided by the guardianship is no longer necessary. Ongoing re-examination of the need for guardianship should be part of the performance of guardianship duties, the reporting process, and possibly the monitoring process.” Managing Administrator, Office of State Guardian

“Families are concerned and want to protect their family member with a disability. Who protects the person with a disability against the family/guardian? Over the years I have seen many kinds of abuse, most of which cannot be documented, but you know what’s going on. Who will stop it? No one, because there is no accountability.” President, Warren Achievement Center, Inc.

“Why is it that it’s very easy to get a guardian when you need one, but getting a guardianship dissolved is a major chore?…My family is contesting my attempt to dissolve it…They still think I’m incompetent…It’s very frustrating…I don’t want to sue them, because they saved my life.” College Student

“Monitor the guardians – an absolute must…If the individuals under guardianship aren’t to be railroaded.” Exec. Director, Seguin Retarded Citizens Assoc., Inc.

“You need to change the terms of the guardianship as the person changes…We need a monitoring program.” Assoc. Director, Shawnee Health Services

“I had a guardian for seven years, I never was asked would I like to have my room painted or buy myself a new pair of shoes out of my pension money. I had earned that money…I went to my job for 27 years with a mental problem. Today, I have my rights back, but the money for seven years has not been accounted for. I

142

would have loved to know how much money was being spent by my guardian, but I was never told – not once.” Mental Health Consumer

“Although guardians are required to file annual accountings, there is great concern about the effectiveness of judicial oversight in these cases. The court has an obligation to know the status of each disabled person…Submitted documents need to be reviewed.” Representative, AARP

“We have encountered guardians who no longer answer phone calls/letters from the nursing homes, thus inhibiting homes from making basic healthcare decisions or even being able to provide clothing and other needed items for the resident. In many instances, once the resident’s assets have been depleted, the resident is abandoned, whether by family or appointed guardian.” Exec. Director, Midland Area Agency on Aging

“[I was a caseworker for an] individual deemed to need a guardian who had co-guardians named. The guardians named do not speak to one another due to a dispute. The individual is asking for a residential service that the person is entitled to, but the guardians have repeatedly dismissed the request. One of the guardians has taken the opportunity to learn more about the residential option and in the past has agreed that such would be a benefit to the person; however, the other guardian refuses to become familiar with the option…This individual is currently living in a setting that is inappropriate and is now choosing to move to an appropriate setting but cannot do so as the guardians do not support the individual’s decision. Unfortunately, I know of other situations in which developmentally disabled adults would like to live in less restrictive environments, but the guardian refuses.” Service Coordinator, Champaign County Regional Planning Commission

“I know many developmentally disabled persons who have parents as guardians for many years, but they do not visit the person in the institution and are not involved in the person’s service planning. There have been instances where a resident can’t move into the community from the institution because the uninvolved guardian can’t be found or does not agree…My supervisors told me I can’t do anything about it.” Social Worker, State Institution

“A delinquency in the reporting on the care and progress of the ward should be ‘jumped on’ with a reminder letter in 30 days of delinquency…Failure of the guardian to report should be viewed as a signal of other possible problems…The court must take a proactive stance…to prevent further damage/exploitation of the ward.” Director, Services for Disability, Inc.

“Guardians who are not functioning should be removed by the court and replaced by someone who will be actively advocating for the ward.” Exec. Director, Service of Will, Grundy & Kankakee Counties

“Our judge will issue citations if annual reports are not filed.” Senior Services Supervisor, Catholic Charities of Decatur

“Judges don’t know that annual reports haven’t been filed.” Regional Ombudsman, I Care Long Term Care

“Fortunately, we were appointed guardians in a county which does not require any reporting whatsoever from the guardians…We have heard that other counties

143

in Illinois require annual reports…We dread the thought we might be required to file annual reports, thus wasting our time and money, and the time and money of the state facility, and clogging the legal system with useless paperwork.” Father of Son with Developmental Disabilities

“We don’t want additional reports to figure, fill out, or file…It’s already a painful process.” Parents of Son with Developmental Disabilities

“The court should stay away after the guardian is adjudicated unless you need a successor guardian. Rather, the State of Illinois should be mandated to get involved to assure every developmentally disabled person is getting appropriate services.” Attorney

“I think we also need a monitor for a person who was adjudicated as no longer needing a guardian but is fragile – a mentally ill person who might benefit from some monitoring initially.” Attorney

“We must establish a hotline for the report of possible abuse/exploitation of wards, just as we now have such reporting of elder abuse and child abuse.” Director, Services for Disability, Inc.

TRAINING AND EDUCATION ABOUT GUARDIANSHIP AND ITS ALTERNATIVES

Task Force Considerations:

One of the objectives of the Guardianship Reform Project is to promote ongoing training and support to guardians to enhance their ability to perform their respective duties more effectively. Various options for supporting and training guardians have been considered. These include a manual that outlines the duties and responsibilities of the guardian and an orientation course focusing on learning the key values, norms, and information necessary to guide the guardian in his or her surrogate decision-making. A statewide telephone information and referral service would provide another resource for guardians or prospective guardians to contact with questions, information, and/or concerns.

In addition, there is a need to develop effective and efficient mechanisms to disseminate information about guardianship and alternatives to guardianship to seniors and people with disabilities and their families, healthcare and social service professionals, and the general public. Public schools should provide information about guardianship and alternatives to guardianship to persons, and parents of persons, nearing adulthood who are believed to have decisional impairments. A model curriculum for continuing education on guardianship, prepared in consultation with representatives from the judiciary and from local and state bar and medical associations, would benefit all persons involved with making appropriate, informed decisions about guardianship.

Testimony on Guardians:

“There is no training for individuals appointed as guardians and far too little accountability. Guardianship is an enormous responsibility, and I think we owe it to those family members and friends who are willing to take it on, and to do it

144

with care, at least some orientation as to their duties and legal responsibilities.” Chief, Bureau of Elder Rights, Illinois Dept. on Aging

“Training for anyone who is appointed as guardian, whether family, friend, banking institution personnel, or other, should [also] be developed and implemented.” Exec. Director, Midland Area Agency on Aging

“A formal education program should occur so that appointed guardians understand the law and extent of their power.” President, Warren Achievement Center, Inc.

“Support and train the guardians and service agencies with whom [the client] is associated.” Exec. Director, Seguin Retarded Citizens Assoc., Inc.

“For lay guardians training is not only a good idea, it will prove to be a vital necessity...Better trained lay guardians will prevent some litigation which would have resulted from badly managed guardianships. Lay guardians should be required to take basic courses and submit their certificates of completion to the court at the first annual report…” Director, Services for Disability, Inc.

“The state should routinely provide screening, orientation and training for persons considering being guardians…[and] the state should have a resource to assist persons who have been appointed guardian that they can access for advice and counsel and for assistance in completing their annual reports.” Exec. Director, Service of Will, Grundy & Kankakee Counties, Inc.

“The knowledge that guardians must have about social services and public benefit programs can be overwhelming…The Task Force must consider ways of providing training to guardians.” Representative, AARP

“It may be more beneficial for the reformation of guardianship in Illinois to focus on improving the performance of guardianship activities…by clearly defining and adopting an acceptable performance level and supplying the guardianship system with uniform performance standards. This means educating guardians, educating court personnel, developing accountability systems, and so forth.” Managing Administrator, Office of State Guardian

Testimony on Education for the General Public:

“There’s a real lack of understanding of the guardianship role, for example, what the guardian can and cannot do. We need a statewide effort to educate guardians and providers.” Staff, Union County Counseling

“Some parents and family members are afraid to seek guardianship because they don’t know how and don’t know what guardianship requires of them. Guardianship should be demystified so that ordinary people can understand the process, their rights and obligations…A guidebook should be available to the public. Seminars and training sessions, tapes, etc. should also be made available.” Parents of Son with Developmental Disabilities

“Guardianship is a highly restrictive solution to a common problem, and before any guardianship is established, other alternatives must be examined. Alternatives to guardianship must be developed and used; some of those alternatives are advance directives, formal advocacy programs, and community social services to

145

assist and protect people in need with personal dignity without resorting to establishing guardianship.” Managing Administrator, Office of State Guardian

“We need a website…to disseminate information…The site could also be in Spanish, Polish, and Russian. Public education is a vital component to better guardianship…I encounter public misinformation all the time. If we can have infomercials on other subjects, why not one on guardianship? Let’s utilize the media better to reach the average citizen.” Director, Services for Disability, Inc.

“AARP believes that the guardianship petition can be more informative by requiring the petitioner to indicate what alternatives to guardianship were considered and why they were determined to be insufficient. In many instances, petitioners do not see guardianship as a last resort.” Representative, AARP

“Illinois, like many other states, has developed a range of alternatives to guardianship. However, the range of alternatives does not mean anything if no one knows about them. This is an area in which community organizations, advocates for the elderly, and state agencies can work in partnership to develop educational materials and trainings to make information about alternatives available for everyone, not just the elderly.” Representative, AARP

“We need a centralized number to call when a disabled person needs help or has a question about services. Many disabled people need some kind of assistance but do not need a guardian. It can be very frustrating trying to access services that you need…” Disability Advocate/Consumer

“Many biological parents assume that they automatically become the guardian when their child turns 18. They need education.” Service Worker, Community Service Options, Inc.

“Because of inconsistencies [between agencies/organizations] I have to hand out my guardianship papers everywhere I go…There’s a lack of common understanding about guardianship.” Mother of Son with Mental Illness

“I became a caretaker for my mother, and I had a lot of questions when she came home from the hospital – I looked in the yellow pages under the State of Illinois to try to get help. I called the Department on Aging and was transferred five times and never did get help. I was only helped by social workers in the hospital, but once you leave the hospital their social workers aren’t available to you. You need to motivate the State of Illinois to create a list of how to access information.” Caregiver

Testimony on Education for Professionals:

“Guardians ad litem, or GALs, present several difficulties. In many instances, they provide invaluable service to the older person and to the court. In others, however, they are poorly trained, not familiar with the issues, and may present recommendations that are not in the best interest of the person.” Chief, Bur. of Elder Rights, Illinois Dept. on Aging

“We need protocols and best-practice methods for guardians ad litem – standardize the approach to serve best the needs of the client. I would like to see

146

agencies develop guardian ad litem training for non lawyers.” Assoc. Director, Shawnee Health Services

“A quarterly newsletter comes to our office from the Guardianship & Advocacy Commission. I am not sure whether lay guardians receive this as well. It should go to all guardians, lay and professional…The letter could be a forum for relaying information on changes in the law, appellate decisions, and any proposed legislation which can affect guardians. Alongside the information should be a section for guardians to write in with questions…‘Dear Abby’ style for lay guardians.” Director, Services for Disability, Inc.

“We believe that developing and providing training for those who serve in public guardian positions would go a long way toward strengthening the system. We recommend that the training be mandatory for all appointed public guardians prior to assuming their responsibilities.” Exec. Director, Midland Area Agency on Aging

PUBLIC GUARDIANSHIP SYSTEM

The goal of the Guardianship Reform Project is to assure that all persons who require a guardian receive one and all those who do not require a guardian or need only a limited guardian are appropriately adjudicated. Since the Illinois public guardianship system seeks to provide guardians to those in need, it is a major concern of the Guardianship Reform Project to ensure that both the state guardian and the county public guardian have sufficient resources to accomplish this task.

Testimony:

“Although we have always found them [Office of State Guardian] to be very cooperative and helpful, we are also aware that they are short-staffed and underfunded. This has been a long-standing problem…We also see a need for our clients to be able to receive more home visits and more supervision from their state guardian, which can only be accomplished with more staff.” Exec. Director Midland Area Agency on Aging

“We also see a need for evaluation of the public guardian system to determine its effectiveness in meeting the increasing demand for public guardians…Not all of our counties even have a public guardian appointed. Those that do are sometimes ill-equipped to handle the complexities of cases we encounter.” Exec. Director, Midland Area Agency on Aging

“The Long Term Care Ombudsman has identified the problem as a lack of viable petitioners for guardianship. The State of Illinois Guardianship System needs to re-look at the public guardianship process. A reduction of the asset limit may allow public guardians to serve more clients/residents…Increase resources to the Illinois Advocacy and Guardianship Commission to address such gaps in guardianship roles and functions.” Community Service-Grants Mgr., East Central IL Area Agency on Aging

147

“The Office [of State Guardian] has too few personnel and each office covers too large a territory…There is simply insufficient staffing and resources allocated.” Case Coordinators, Senior Services of IL Inc.

“It is of concern that the caseload size of guardians is too large. The caseload size makes it difficult for Choate staff to obtain needed information from the guardian. Often the guardian’s caseload is so large that they are not familiar enough with the individual clients to provide needed critical information, e.g. client history, medication history, etc…[due to the caseload size] the guardian has limited time to be involved in the client’s care planning at the hospital, e.g. treatment team meetings, discharge planning, etc.” Clinical Staff, Choate Mental Health and Developmental Center

“The caseload of guardian representatives of the Office of State Guardian should be reduced to a maximum of 60 individuals.” Exec. Director, Service of Will, Grundy & Kankakee Counties, Inc.

“I don’t know who the public guardians are in my area.” Assoc. Director, Shawnee Health Services

“The Office of State Guardian (OSG) needs a lot more support, especially in the south, where they have to travel long distances….Three-quarters of my 66 client caseload is with the OSG.” Caseworker, Intermediate Care Facility for Persons with Developmental Disabilities

“There is a need for more qualified guardians who are trained in decision making. The National Guardianship Association, of which Catholic Charities is a member, recommends a caseload of not more than 30 wards.” Senior Services Supervisor Catholic Charities of Decatur

“As an organization, it’s difficult to petition for guardianship…The Guardianship and Advocacy Commission has knowledge of how guardianship should work, but they have a lot to do.” Regional Ombudsman, I Care Long Term Care

“For nursing home residents, there is often no one to petition for guardianship, even where the state will act as guardian…It is often very difficult to find responsible people to act as guardians. The need is greater than the supply of willing, able, and trustworthy persons or agencies to act on behalf of these, our most vulnerable citizens.” Chief, Bur. of Elder Rights, Illinois Dept. on Aging

“The public guardian has taken many people out of nursing homes into the community…If they trample on individual rights, it is only because they want to protect them [the people].” Trust Officer, US Bank (former Office of Public Guardian employee)

“I have great concern that this very vulnerable population of people [elderly demented patients] has been deprived of their right to refuse medical treatment when the benefits to them do not outweigh the risks. State-appointed guardians seem to feel that the most aggressive care is in the best interest of the ward…The best care at certain times may be one that does not subject the ward to burdensome medical care but rather aims instead to assure comfort.” Physician and Ethics Consultant, a community hospital

“When I found that people needed additional supports, I looked to community social service agencies and the public and state guardian. I always had good

148

experiences referring people to the public guardian or the state guardian…They were always very helpful.” Attorney, State’s Attorney’s Office

“Public guardians should not be permitted to file petitions seeking themselves as guardian unless there is representation to the court that there is no other person, such as a relative or a friend, willing to act as guardian.” Attorney

“[When no family member is available to assume guardianship it is a difficult situation for the hospital] unless the patient has sufficient assets for the public guardian, the state guardianship (Office of State Guardian) process is time-consuming, cumbersome, and costly. This creates a double functional standard in Illinois whereby persons with assets greater than $25,000 can obtain a public guardian, but those with less must turn to the Office of State Guardian, which often fails to assume responsibility. Frequently patients who are in need of guardianship return to the community without care and supervision. This puts their health and safety as risk as well as presenting a risk to the community in which they live…The State of Illinois should provide sufficient funds so that the Guardianship and Advocacy Commission can perform their essential function.” Social Workers, Rush North Shore Med Center

“The guardian appointed should be as close to the person as possible, meaning family or friend, or a professional from the community in which the person resides…The Office of State Guardian, and other public guardians, should continue to be seen only as guardians of last resort when there are no other guardians closer to the individual capable or willing to serve.” Managing Administrator, Office of State Guardian

“A worker from the Office of Cook County Public Guardian contacted me and advised me by telephone that an ‘anonymous person’ had contacted their office and filed a report indicating that they had reason to believe that my friend was incapable of handling his personal and financial affairs and questioned his mental stability in general…I asked her why she was calling me and not [my friend]. Her answer was vague and evasive…I assured her that [my friend] did not need their assistance...She indicated that their office would require [him] to undergo a psychiatric evaluation and that they would take action if he were determined to be mentally unstable…The public guardian worker contacted his physician without getting permission to do so.” Private Citizen

“Professional guardians should adhere to a defined ethic of guardianship practice…Currently the National Guardianship Association has developed and adopted for guardians a Code of Ethics and Standards of Practice, and some states have codified these ethical precepts into state laws.” Managing Administrator, Office of State Guardian

COST OF GUARDIANSHIP

The cost involved in the guardianship process is a significant issue voiced by family members and service providers. It is a factor that impacts the speed of adjudicating a guardianship for a person who is decisionally impaired. If lack of monetary resources is an issue for a prospective guardian, a petition cannot be filed to initiate the process.

149

“It is difficult to find low- or no-cost legal assistance to petition for guardianship, even where an appropriate guardian has been identified. Many legal assistance offices will not assist with guardianship, as they do not want to be in the role of depriving a person of their rights. In the meantime, the person may be seriously mistreated, stripped of their assets and income, and lose their home and the ability to pay for their own care.” Chief, Bur. of Elder Rights, Illinois Dept. on Aging

“Some parents and family members believe that they cannot afford to seek guardianship for their loved ones, and they may be right. In no case where a parent or family member is willing to be a guardian should the cost be the prohibitive determining factor. [They] should be provided with lists of legal clinics and attorneys who are willing to do that work pro bono. Other creative options should be pursued.” Parents of Son with Developmental Disabilities

“GAL [guardian ad litem] payment is an ongoing problem. We have cases where indigent elders are forced to pay for the GAL’s services even for time that the GAL spent trying to get paid.” Chief, Bur. of Elder Affairs, Illinois Dept. on Aging

“[My agency recommends to] waive filing and court fees associated with the petitioning for guardianship…[The fees] also make it difficult in recruiting an appropriate petitioner.” Community Services-Grants Mgr., East Central IL Area Agency on Aging

“There is a serious lack of funding for qualified guardians. The costs associated with the legal process to obtain guardianship for many individuals who need guardianship can be prohibitive. Many of the clients we see are indigent, and funding needs to be established for the petitioning process through the court.” Senior Services Supervisor, Catholic Charities of Decatur

“The legal expenses involved in obtaining guardianship of a child with disabilities is prohibitive, so much so that it can be a burden even for families with incomes that are average or above average. Many times parents are told there is legal assistance available, only to discover that, when they try to access assistance, it is either difficult to find or does not exist in their part of the state. Any reform of the guardianship system should include provisions to assist parents with the cost of obtaining guardianship.” Family Advocate, Soyland Access to Independent Living

“The state should have a fund accessible to families and individuals who need to file for guardianship but cannot afford the expenses.” Exec. Director, Service of Will, Grundy & Kankakee Counties, Inc.

“How can we make the guardianship process something that everyone can afford?” Service Provider, Community Service Options, Inc.

“GALs [guardians ad litems] are typically paid if there’s money in the estate – sometimes the petitioner has to pay. It’s usually not a lot of money, like $400-$600. There’s pro bono if no one has any money.” Attorney, Coordinator of Pro Bono GAL Program

“Currently the petitioner bears the expense, which can be considerable…The problem with expanding the role of GAL is there’s not enough funds.” Private Guardian

150

“There’s no funding for indigent persons to petition the court.” Caseworker, Prairie Council on Aging

“Any changes you make to guardianship proceedings recognize that the seniors we serve are low income. The financial burden on families is great.” Assoc. Director, Shawnee Health Service

Families who don’t have the financial resources are referred to Office of State Guardian – but the referral process with them is very long.” Case Coordinators, Senior Services of Central IL Inc.

“The Medical Center has never been reimbursed for the costs of guardianship on behalf of these patients. In most of these cases the Medical Center petitions the court for temporary guardianship, paying the legal fees and court costs. In many cases the Medical Center continues to assume the financial burden for these patients and often must continue to follow the court process even long after the patient has left the Medical Center.” Social Workers, Rush North Shore Med Center

OTHER ISSUES OF CONCERN

There were several other issues raised in written and/or oral testimony, in addition to those listed above, which interface in some way with the overall subject of guardianship. These include the Illinois Healthcare Surrogate Act, mediation, responsibility of hospitals, sanctions to guardians, power of attorney, alternatives to guardianship, volunteer guardians, and temporary guardianship orders.

Testimony on the Illinois Health Care Surrogate Act:

“The amendments and protections that the Task Force proposes will have no impact on most Seniors who lose capacity to make decisions. Why? The 1998 Amendments to the Health Care Surrogate Act provide a method for medial decisions to be made without resort to the judiciary, i.e., the guardianship process.” Clinical Prof., SIU Law School

“Presently the Health Care Surrogate Act allows for medical decisions to be made whenever one physician determines that a patient lacks capacity to make medical decisions. The Act does not define medical treatment. Therefore it does not limit the type of medical decisions that a surrogate can make – which directly conflicts with the common law that has developed surrounding guardianships.” Clinical Prof., SIU Law School

The Act does not require the physician to notify the patient that the physician has determined that he lacks decisional capacity…does not require the physician to inform the patient that a surrogate’s decisions will be followed…does not give the patient the right to reject the surrogate’s decision…does not give a process for the patient to contest the physician’s determination that he lacks capacity…” Clinical Prof., SIU Law School

“…this Act circumvents people from the process and protection that you [the Task Force] propose to give them.” Clinical Prof., SIU Law School

151

Testimony on Use of Mediation:

“Mediation is an effective option in adult guardianships. It’s a process in which a trained third party helps people discuss issues and explore options and reach agreement without making judgments or imposing solutions. Mediation can be used before or after the petition has been filed [however,] if mediation is initiated before the petition is filed, conflicts or issues could be resolved in advance…It’s particularly well-suited to guardianship situations because of the family dynamics involved…It gives a voice to everyone in the process in a safe and nonintimidating environment, and it’s very flexible to time and place.” Exec. Director, Center for Conflict Resolution

“The mediator does not act as arbitrator or judge, does not make decisions for people. Nor does the mediator become a therapist. Rather, the mediator receives training in helping people talk out problems in a way that moves from the past to the future, and from blaming to problem-solving and consensus-building, in the shadow of the legal system…Courts find dealing with [emotional family issues] difficult [and] the court’s hands are tied by remedies available under the statutes…Through mediation, people involved in a dispute can have their say, free from rules and restrictions of evidence – this is a different way to resolve disputes, one that has advantages that the court cannot offer…Mediation tends to be more time- and cost-effective than litigation.” Professor, SIU Law School

Testimony on Hospital Dilemma Persons with Decisional Impairments:

“The Medical Center is caught in the middle with regard to obtaining guardianships. It should be the responsibility of the State – not hospitals – to make sure that a guardian is appointed to address the needs of the individual. The disparity between services available to citizens who qualify for public [county] guardianship versus state [Office of State Guardian] guardianship is striking.” Social Workers, Rush North Shore Med Center

“Even when the patient has a guardian, the requirement to obtain a court order for discharge to a nursing home or other facility unnecessarily prolongs the patient’s hospitalization. It burdens the hospital with the costs of caring for a patient who no longer needs hospitalization but does not have the ability to make the appropriate decisions about his or her placement or care.” Social Workers, Rush North Shore Med Center

“We are often faced with patients lacking decisional capacity who come to our Medical Center for acute care but do not have anyone with legal authority to make admission, treatment, or discharge decisions on their behalf. Surprisingly, many patients who lack decisional capacity come to our facility from nursing homes without guardians, agents under the durable power of attorney for healthcare law, or even friends and family members who could act as healthcare surrogates. Without legal representatives to make treatment decisions on behalf of patients, the Medical Center is faced with the responsibility of obtaining a guardian to protect the interests of these patients and make appropriate arrangements for their

152

care and well-being after discharge. As a result, there is delay in implementing nonemergency care.” Social Workers, Rush North Shore Med Center

Testimony on Sanctions for Guardians:

“I would urge some sanctions that would discourage people who have ulterior motives, who only want to exploit people or abuse power – but not too harsh that you would discourage people from being a guardian.” Judge

“I’ve seen horror stories about guardians…gone into homes where people have been caged, tied up to wheelchairs, and gagged…There’s an overwhelming issue of greed. We should initiate into law something that would cause people not to take advantage of people who are elderly or disabled…People need protections…There needs to be increased criminal sanctions…and do more about financial exploitation.” Sergeant, Chicago Police Dept., FLAG (Financial, Law Enforcement, and Government) Program

Testimony on Powers of Attorney:

“[The] power of attorney [POA] is on its way to being our next big crisis…In the past three years, we’ve recorded over 115 financial exploitations, and in 60% of these it was misuse of POA….Crime rings were discovered…Many elderly people don’t have family around, and they can be easily taken advantage of…” Staff, Bank One, FLAG Program

“Some people had several powers of attorney…it’s very easy for a POA to be handled between an individual and a bank…now we’re asking straightforward, simple questions, such as ‘how long have you known this person?’…We won’t honor the POA if we’re suspicious.” Staff, Bank One, FLAG Program

“POA is not an alternative to guardianship unless there are more protections. POAs are unaccounted for, unlike guardianship.” Staff, Bank One, FLAG Program

Testimony on Use of Volunteer Guardians:

“Volunteers are better used in less demanding situations, such as in money management programs or court monitoring of guardianships…Volunteer programs only work well if the volunteer is trained at the outset, and then supervised and helped during the process.” Field Coordinator, Egyptian Area Agency on Aging, Inc.

“The state should sponsor ongoing programs to recruit, screen, train, and support qualified individuals who would volunteer as guardians for people who had no one else…” Exec. Director, Service of Will, Grundy & Kankakee Counties, Inc.

Testimony on Temporary Guardianship:

“Under Illinois law, orders appointing temporary guardianship are valid for 60 days. If a guardianship is contested, that time frame is often unrealistic, especially

153

if a jury trial becomes necessary. There is no provision for extensions of this order…There needs to be some mechanism where the temporary guardianship can be extended…This could be done by granting the court overseeing the guardianship hearings the ability to renew the order prior to its expiration. An alternative would be to extend the validity length of the order appointing temporary guardianship past 60 days, such as to 120 days.” Case Coordinators, Senior Services of Central IL Inc.

“I would like the 60 day temporary guardianship to be extended. As things stand now, it can’t be extended if it hasn’t been permanent by 60 days. Sometimes this causes a hardship.” Private Guardian

“There also needs to be an extension of the 60-day temporary order. Many times the 60- day emergency order is not enough time to prepare the evidence before the plenary hearing.” Senior Services Supervisor, Catholic Charities of Decatur

Miscellaneous Testimony:

“There needs to be a mechanism for agencies performing investigations of allegations of abuse/neglect/exploitation to petition the court for access to the alleged victim and information relevant to the alleged victim’s situation without the guardian’s permission in cases where the guardian is the alleged abuser.” Case Coordinators, Senior Services of Central IL Inc.

“It would be beneficial if the guardian could make the decision for emergency psychiatric care…The mental health code doesn’t allow it…Sometimes we have to wait a long time before we can start treatment if the patient doesn’t agree…” Psychiatrist, Choate Mental Health and Developmental Center

Appendix J

Guardianship: An Overview of Key Issues

This outline of issues and questions about guardianship has been compiled by the Project Manager of the Guardianship Reform Project after a review of the literature and discussions with a vast array of experts from throughout the United States. The list

154

should not be considered as either exhaustive or definitive, but rather as providing guideposts for the Task Force’s initial discussions.

I. Appropriateness of GuardianshipA. Objectives of guardianship: To be a protective system of last resort; to balance protection and liberty interestsB. Evidentiary burden of proof: Is the Illinois standard in accord with the above objectives?C. Standards for determining incapacity

1. Are they sufficiently stringent to avoid unnecessary guardianships? 2. How does the court assess whether an individual meets standards

(i.e. how does it assess competency/decisional capacity)?a. What are the tests used to assess competency?b. Is there sufficient distinction of criteria for different capacities?c. Are there sufficient statutory qualifications for the physician who assesses capacity?

D. Standards for restoration of rights/termination of guardianship

II. Procedures for Appointing GuardiansA. Filing

1. Who can file?2. Does the petition form have adequate information?

B. Notice1. Is the language of the summons sufficiently clear? Is the print sufficiently large?2. Does the potential ward have adequate understanding of his/her rights and sufficient time to prepare for the hearing?3. Has the potential ward been given all information necessary to prepare for the hearing? (e.g. doctor’s report, other evidence offered by petitioner?)

C. Guardian ad Litem (GAL)1. What should the role of the GAL be?2. Under what circumstances should he/she be appointed?3. Are there an adequate number of GALs to meet the need? If not, what is

necessary to alleviate the deficiency?. Attorneys

1. Should legal counsel for guardianship hearings be mandatory?2. What is the proper role of legal counsel: adversarial vs. best interest of client? How does the attorney’s perceived role affect the guardianship decision-making process? Should the role change and, if so, how should this be accomplished?

E. Presence at Hearing1. Should the potential ward’s presence be mandatory except in extreme cases? If there is to be judicial discretion regarding the potential ward’s presence at the hearing, should parameters for such discretion be delineated in the statute?

155

2. Should the scheduling of the hearing meet the particular needs of the potential ward (e.g. those times of day when lucidity is greatest)?

F. Mediation: In what circumstances should this be encouraged by the court in lieu of hearing?G. Restoration: Termination of guardianship/restoration of rights: standards and procedures H. Costs: What are the costs of each of above procedures? Is the funding level

adequate?

III. Alternatives to GuardianshipA. Statute: Does it provide sufficient motivations to look for alternatives to guardianship which should be treated as the last resort?B. Demands for guardianship: From where/whom and in what situations come the greatest demands for guardianship? e.g. hospitals, family members, nursing homes. C. Alternatives to plenary guardianship of the person: When are they used? If they are not being used sufficiently, what are the reasons? What are the advantages and disadvantages of each? What are the costs associated with each alternative?:

1. Limited guardianship2. Durable powers of attorney3. Representative payees4. Limited court orders5. Advanced directives/Living wills6. Trusts7. Surrogate consent8. Other

D. Services: What services exist and what should be added in the community to encourage the use of alternatives? E. Public awareness: How can awareness of alternatives be increased?

IV. Standards for the Conduct of GuardiansA. Threshold standard: What is the threshold standard for appointment as a guardian? Is this standard adequate?B. Controls: What controls exist or need to be created to assure that standards are being met by each type of guardian?:

1. Public guardian2. Private: family/nonfamily member3. Private: agency (should certification be required ?)

C. Responsibilities of a guardian: What responsibilities should a guardian have and what are the limitations on what a guardian can do? How and by whom are guardians informed of their responsibilities?D. Training: Should there be a mandatory training course for guardians? How can training be most effectively and efficiently provided? E. Monitoring: Examine existing court monitoring systems in Illinois

1. Are they satisfactory? If not, what aspects need to be improved?

156

a. Reporting: what should be the content of reports? Who should be submitting reports and how often (e.g. the guardians themselves or independent evaluators)?b. Courts’ assessment of reports: need for additional staff?c. Methods to remedy those problems revealed through monitoring

2. Alternative models of monitoring: paid professionals or volunteers: what are the costs and benefits of each model?

F. Resources for Guardians: What are free or low-cost resources available to assist guardians in satisfying their duties?

Appendix KBIOGRAPHIES

Task Force Chairperson

Mark J. Heyrman, J.D., is a Clinical Professor at the Edwin F. Mandel Legal Aid Clinic of the University of Chicago Law School. He teaches law students to be effective advocates for indigent persons with mental illness through supervised litigation and work to enact amendments to the mental health laws in Illinois. He is immediate Past President

157

of the Mental Health Association in Illinois and Chair of its Public Policy Committee. In 1988, Mr. Heyrman served as Executive Director of the Governor’s Commission to Revise the Mental Health and Disabilities Code of Illinois.

Senior Review Board

Judge Thomas R. Appleton serves as a Circuit Judge in the Seventh Circuit where he is the Presiding Judge in the probate division. He was elected to the bench in 1992, serving both before and after his election on the Boards of numerous civic organizations, including Lutheran Child and Family Services and Land of Lincoln Goodwill.

Representative Patti Bellock represents the 81st legislative district. Her legislative committee assignments have included Mental Health, Aging, Children and Youth, Human Services and Appropriations, as well as the tobacco settlement committee. Prior to her tenure as a state representative, Rep. Bellock served six years on the DuPage County Board.

Justice Robert E. Byrne serves as a Justice of the Illinois Appellate Court in the 2d District. Prior to this appointment, he served as Circuit Judge of the 18th Judicial Circuit of DuPage County, Presiding Judge of the Chancery Division, and Judge of the Probate Court. Judge Byrne is the founder of Court Friends, a Guardian Monitor Program that provides an independent annual appraisal of the living conditions and finances of adult wards with disabilities.

Judge Maureen E. Connors was selected as an Associate Judge in 1988. Her assignments have included Traffic Court, Domestic Violence Court and the Fifth Municipal District. Judge Connors was elected Judge of the Circuit Court of Cook County in 1994 and was assigned to the Probate Division, hearing cases on the Disabled Adults calendar.

Representative Barbara Flynn Currie represents the 25th legislative district. She currently serves as the Majority Leader of the Illinois House. Her legislative accomplishments include sponsorship of the Illinois Freedom of Information Act and the state program that funds pre-school services for disadvantaged youngsters. Rep. Currie sponsored legislation to protect Illinois groundwater, to protect nursing home residents, and to improve child support enforcement.

Senator Laura Kent Donahue represents the 48th legislative district. She has sponsored legislation affecting health care, nursing homes, child support collections, as well as legislation to expand the state’s new interactive educational network. Sen. Donahue is Vice Chairman of the Senate Appropriations Committee and a member of the Senate Environment and Economic and the Senate Public Health and Welfare Committees, among others.

Judge Miriam Harrison became an Associate Judge in the Circuit Court of Cook County in 1985. Previous to her appointment as Judge, she was in private general law

158

practice. Judge Harrison was assigned to the Probate Division in 1986, where she oversees adult guardianship cases.

Representative Kevin McCarthy represents the 37th legislative district. He is a former public school teacher and has supported several laws and initiatives in education, including school safety programs and raising academic standards. Rep. McCarthy is a member of the following House Committees: Child Support Enforcement, Computer Technology, Urban Revitalization, Elections and Campaign Reform, and the Special Committee on Mental Health and Patient Abuse.

Representative Rosemary Mulligan represents the 55th legislative district. She serves on the Governor’s Work Force Development Board and was a program chair of the White House Women’s Economic Leadership Summit. Rep. Mulligan has served on the Mental Health Task Force, the Governor’s Work Group on Early Childhood Education, and the Citizens Committee on the Juvenile Court Advisory.

Senator Barack Obama, J.D., represents the 13th legislative district. Senator Obama serves as the Minority Spokesperson for the Senate Public Health and Welfare Committee. In 1991, he joined the law firm of Miner, Barnhill & Galland, where he specializes in voting and employment rights cases. He is also a Senior Lecturer at the University of Chicago Law School.

Senator Kathleen Parker represents the 29th legislative district. She is Chair of the Senate Transportation Committee and a member of the Senate Commerce and Industry Committee. Senator Parker chairs the Senate Mental Health Treatment Task Force. She has sponsored legislation to improve the quality of life for individuals with disabilities, improve the quality of health care in Illinois, and keep the state’s business climate conducive to job growth and expansion.

Judge Stephen G. Sawyer has served as an Associate Judge on the Second Judicial Circuit Court of Illinois since his appointment in 1992. He has held court throughout the twelve-county Second Judicial Circuit, presiding in both criminal cases and civil cases, including guardianship cases on a frequent basis. Prior to his bench appointment, Judge Sawyer was in private practice in Mt. Carmel for 13 years and served as the elected State’s Attorney for Wabash County for 11 years.

Judge Joseph Schneider is a Retired Judge of Circuit Court of Cook County. Prior to his retirement in 1992, he was the Presiding Judge of the County Division of the Circuit Court for 10 years. Judge Schneider served as Chairman of the Governor’s Commission that drafted the new Mental Health and Developmental Disabilities Code for Illinois in the early 1980’s. Since retirement, he has served as Federal Court monitor, overseeing compliance of settlements involving class action cases dealing with wards of the State and children with disabilities in the Chicago Public Schools.

159

Representative Jeffrey Schoenberg represents the 58th legislative district, which includes Glencoe, Winnetka, Kenilworth, Wilmette and sections of Evanston, Skokie, Glenview, and Northfield. He serves as Chairman of the House Appropriations Committee for General Services and Government Oversight, Chairman of the House Special Committee on State Procurement, and Vice Chairman of the Human Services Committee.

Judge E. Kenneth Wright, Jr. is a Judge of the Circuit Court for Cook County since 1994. He has practiced general law with special emphasis on Probate Practice. Judge Wright was assigned to the Probate Division in 1995.

Task Force

Michael S. Appleby, Ph.D., is on the faculty and medical staff of Loyola University Medical Center as a clinical neuropsychologist. Dr. Appleby also maintains a private practice. He has particular interest in the assessment and case management of developmental and acquired neurological conditions.

Howard Berk, J.D., (representing Kerry R. Peck) is a consulting attorney for the Cook County Public Guardian. He is the Executive Director of the Illinois Disability Association, a not-for-profit organization which acts as co-trustee along with LaSalle Bank N.A. of the Illinois Disability Pooled Trust. Mr. Berk is the previous President of the Illinois Chapter of the National Academy of Elder Law Attorneys and Chair of the CBA’s Special Committee celebrating Older Persons. He has published several articles on trust related matters in the Illinois Bar Journal and Illinois Institute of Continuing Legal Education.

Tom Berkshire is the President of Inclusive Environments Inc., a newly-formed development services company specializing in inclusive settings for persons with disabilities. For the last 10 years, he has been the Executive Director of Easter Seals Illinois. Prior to that, Mr. Berkshire was a human services and senior policy analyst for Governor James R. Thompson. In that capacity, he served as Chairman of the Planning Council on Developmental Disabilities.

Irene Clarke David, J.D., (representing Cheryl Niro) is engaged in the private practice of law in Barrington, IL. She concentrates her practice in estate planning, elder law, real estate, and business law. Ms. David is a member of the National Network of Estate Planning Attorneys, and serves on the Illinois State Bar Association Section Council on Trusts and Estates.

Mark B. Epstein, J.D., maintains a general and litigation law practice in Chicago that concentrates in the areas of mental health law, elder law, and probate and estate administration. He is an Adjunct Professor at the Northwestern University Law School and lectures on various mental health law topics. Mr. Epstein is currently the Legislative Liaison for the Chicago Bar Association Mental Health Law Committee and has published several articles that address legal issues for persons with mental illness.

160

John F. Erbes, J.D., an Assistant Clinical Professor at Southern Illinois University School of Law, teaches and supervises law students in a civil legal clinic that represents citizens aged 60 and over in Illinois’ 13 southern-most counties. He regularly writes articles on senior and health issues and speaks to senior audiences and groups associated with older individuals. Professor Erbes is active in state and national bar associations and is co-editor of the Illinois State Bar Association’s Elder Law Section’s Newsletter.

Steven C. Fox, D.O., is a licensed physician/surgeon. His practice includes assessing decision-making capacity, care planning and treatment for cognitively and psychologically impaired individuals. Dr. Fox has participated in more than 400 guardianship cases over the past 15 years. He serves as a testifying expert in civil cases of nursing home malpractice/negligence and in criminal elder abuse and financial exploitation cases.

Deborah Gaebler-Spira, M.D., is a Board certified pediatrician and physiatrist. She has directed the cerebral palsy program at the Rehabilitation Institute of Chicago for the past 15 years. Dr. Gaebler-Spira is an Associate Professor at Northwestern University Medical School and is a consultant for children with physical disabilities at the Chicago Board of Education and Children’s Memorial Hospital.

Benedict Gierl, M.D., is a Geriatric Psychiatrist who maintains an active practice that includes consultations, nursing homes, and competency evaluations. He has been a consultant to the Rush Alzheimer’s Disease Center since 1990. Dr. Gierl’s main focus is emotional and behavioral problems, especially with individuals who also suffer from neurological issues.

Madelyn Iris, Ph.D., is Interim Director at the Buehler Center on Aging, Northwestern University Medical School. She is an Assistant Professor in the Department of Medicine and holds an adjunct appointment in the Department of Anthropology. Dr. Iris has conducted research on the guardianship system in Illinois over a period of 15 years and is currently completing a book on the multi-disciplinary perspective of guardianship. She was a founding member of the National Guardianship Association.

Mary Briody Mahowald, Ph.D., is a Professor at the University of Chicago in the Department of Obstetrics and Gynecology and Assistant Director of the MacLean Center for Clinical Medical Ethics. She teaches medical students and doctors and is routinely involved in clinical ethics consultations. Besides serving on various national ethics panels, Dr. Mahowald has published over 100 articles and five books, mainly on topics in medical ethics.

Joseph T. Monahan, J.D., is the co-founder of the Chicago firm, Monahan & Cohen. Mr. Monahan has represented hundreds of clients in adult guardianship proceedings. He has lectured extensively on legal issues concerning guardianship law, powers of attorney and various aspects of mental health law. Mr. Monahan is an Adjunct Professor at the Loyola University School of Law.

161

Zena Naiditch has served as President and Chief Executive Officer of Equip for Equality, Inc. since its inception in 1985. Prior to entering the private sector, she served as the Director of the Governor’s Long-Term Care Policy Project, a special one-year initiative aimed at improving the planning, management, and delivery of service to older persons. She also served as a Staff Associate with the Commission on Mental Health and Developmental Disabilities, a bi-partisan legislative body which advised the state legislature on disability-related policy issues.

Cheryl Niro, J.D., is a partner at the Chicago law firm of Quinlan & Crisham, Ltd., and is President of Judicial Dispute Resolution, Inc. Her practice is concentrated on advising, counseling and negotiating diverse disputes. Ms. Niro is the immediate Past President of the Illinois Bar Association.

Kerry R. Peck, J.D., is the senior partner with Peck, Bloom, Miller & Mitchell, LLC, a seven attorney law firm with offices in Chicago and Northbrook, Illinois and in Ft. Lauderdale and Sarasota, Florida. Mr. Peck’s law practice specializes in Probate, Elder Law, Estate Planning, and Guardianship/Probate litigation. He is the immediate Past President of the Chicago Bar Association.

Peter J. Schmiedel, J.D., is the Deputy Public Guardian for the Adult Guardianship Division of the Cook County Public Guardian’s Office. The office is the court appointed guardian for approximately 400 disabled adult clients. Mr. Schmiedel previously spent twenty-one years with the People’s Law Office, where he specialized in civil rights litigation.

Scott K. Summers, J.D., maintains a private law practice in a Chicago suburb. His publications include Guardianship and Conservatorship: A Handbook for Lawyers, which was published in 1996 by the American Bar Association.

John H. Wank, J.D., is the Director of Programs and General Counsel for the Illinois Guardianship and Advocacy Commission. He served as Director of the Office of State Guardian from 1991 to 1999 and has been Office of State Guardian Chief Counsel since 1990. Mr. Wank is the President Elect of the National Guardianship Association and a board member of the Illinois Guardianship Association.

Staff

Morris A. Fred, J.D., Ph.D. (Anthropology), is the Manager of the Guardianship Reform Project, Senior Policy Analyst for Equip for Equality, and Senior Lecturer at the University of Chicago. He has conducted research in Taiwan and in Sweden, where he taught at Stockholm University and served as a consultant for the Swedish National Board of Health and Welfare on immigration and refugee policy.

162

E.G. Enbar is Assistant Manager of the Guardianship Reform Project and Policy Assistant for Equip for Equality. She has worked as an Advocate and Consultant for agencies that provide services to people with disabilities for over 20 years, as well as an advocate for patients in healthcare settings. Ms. Enbar serves on the Oak Park Mental Health Board.

163

Documents

Introduction: Confronting the Culture of Guardianship · Web viewThe Guardianship Reform Project had a full-time Project Manager, whose responsibilities included conducting research