C

Study Activities

This appendix describes source material used by the committee and documents the diverse activities carried out over the 12-month data collection and analysis period of the project. The initial contract between the Institute of Medicine (IOM) and Administration on Aging (AoA) for this study was for a 15-month project, beginning in October 1993. The contract was subsequently amended to allow four additional months for publication and dissemination of the committee’s report and close-out activities.

Faced with the great diversity of the state long-term care (LTC) ombudsman programs and the limitations of data, time, and resources, the committee used a multifaceted approach: gathering systematic data from numerous key informants and commissioning formal background papers. As expected given the many state and local offices that compose the national ombudsman program, these multiple sources frequently provided contradictory information.

Additionally, the committee used information relevant to its study that was available in the public domain from such sources as the AoA, American Association of Retired Persons (AARP), and the current and prior national ombudsman resource centers. When used in the report, citations to the appropriate sources are provided. The committee made multiple efforts to obtain current, accurate state-specific descriptive information so that the committee could build its findings, conclusions, and recommendations on a known and reasonably consistent set of variables. However, within the time and resources available, the committee was unable to reconfirm state-specific information about certain features of the ombudsman program, such as the number of full-time equivalent staff, the amount of nonfederal funds supporting the ombudsman program, and the number of local ombudsman programs operating within a state. Thus, at the end of the study the committee



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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act C Study Activities This appendix describes source material used by the committee and documents the diverse activities carried out over the 12-month data collection and analysis period of the project. The initial contract between the Institute of Medicine (IOM) and Administration on Aging (AoA) for this study was for a 15-month project, beginning in October 1993. The contract was subsequently amended to allow four additional months for publication and dissemination of the committee’s report and close-out activities. Faced with the great diversity of the state long-term care (LTC) ombudsman programs and the limitations of data, time, and resources, the committee used a multifaceted approach: gathering systematic data from numerous key informants and commissioning formal background papers. As expected given the many state and local offices that compose the national ombudsman program, these multiple sources frequently provided contradictory information. Additionally, the committee used information relevant to its study that was available in the public domain from such sources as the AoA, American Association of Retired Persons (AARP), and the current and prior national ombudsman resource centers. When used in the report, citations to the appropriate sources are provided. The committee made multiple efforts to obtain current, accurate state-specific descriptive information so that the committee could build its findings, conclusions, and recommendations on a known and reasonably consistent set of variables. However, within the time and resources available, the committee was unable to reconfirm state-specific information about certain features of the ombudsman program, such as the number of full-time equivalent staff, the amount of nonfederal funds supporting the ombudsman program, and the number of local ombudsman programs operating within a state. Thus, at the end of the study the committee

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act did not try to update state-specific descriptive data through direct contacts with each state because of an expectation of less than a 100 percent response rate in the time remaining and the resulting dilemma of having yet another incomplete database. STUDY COMMITTEE AND TECHNICAL PANEL Study Committee Studies undertaken by the National Academy of Sciences (NAS) and the IOM are conducted by expert committees. These committees comprise individuals selected for their expertise who can provide information and insights from all disciplines and social sectors that are important to the topic under study. The IOM committee for this study, which was appointed in the fall of 1993, consisted of 16 members with expertise in medicine, medical sociology, health care policy and research, clinical research, health law, health care administration, state government policy and program administration, consumer advocacy, public health, voluntarism, and the LTC ombudsman program itself. The committee had a broad representation by age, sex, and geographic location. Technical Panel The Older Americans Act (OAA) Amendments of 1992 specified that specific organizations and constituency groups that have interests in the LTC ombudsman programs be consulted regarding the effectiveness study. To that purpose, early in the study the IOM appointed a technical panel composed of a former LTC ombudsman and one representative from each of the following groups: the National Association of Area Agencies on Aging, the National Association of State Long-Term Care Ombudsman Programs, the National Association of State Units on Aging, the National Long-Term Care Ombudsman Resource Center, and the National Senior Citizens Law Center. Throughout the study, the committee turned to individuals on the technical panel for assistance. Table C.1 lists the technical panel members and their affiliations.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act TABLE C.1 Technical Panel Members ESTHER HOUSER ALLGOOD, President, National Association of State Long-Term Care Ombudsman Programs, Oklahoma State Long-Term Care Ombudsman, Oklahoma City VIRGINIA L.DIZE, Program Associate, National Association of State Units on Aging, Washington, D.C. TOBY EDELMAN, Attorney, National Senior Citizens’ Law Center, Washington, D.C. ROLAND HORNBOSTEL, Chief, Program Development and Planning, Ohio Department of Aging, Columbus SARA S.HUNT, Consultant, National Long-Term Care Ombudsman Resource Center, Midland, Michigan BRINA MELEMED, Director, Long-Term Care Policy, National Association of Area Agencies on Aging, Washington, D.C. DATA COLLECTION AND OTHER STUDY ACTIVITIES The committee and IOM staff carried out several major activities during this study: convening meetings; gathering background information through commissioned papers and structured, systematic contacts with a diverse set of interest groups; conducting site visits to six states; and consulting with numerous groups across the country. The committee adopted a policy on confidentiality to assure respondents that data collected during the course of the study would be reported in a manner that would not identify or attribute it to particular individuals or states. This policy was considered to be essential to protect study respondents and to enhance the validity of the data. State-specific information used by the committee that was in the public domain was not treated as confidential material. Meetings Convened by the Committee IOM Committee Meetings The committee met four times for two-day or three-day meetings. At its first meeting, the committee heard a presentation from Virginia Fraser, Colorado state LTC ombudsman. At the committee’s second meeting, Colleen Galambos, of the Maryland Gerontological Association, reported on her research in Baltimore nursing facilities. Additionally, at this second meeting,

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act representatives of four national LTC facility organizations provided overview information on their respective groups’ awareness of and perspectives about the strengths and weaknesses of the LTC ombudsman programs. Table C.2 lists the organizations present at that meeting. The third and fourth committee meetings were executive sessions during which the committee formulated its findings, conclusions, and recommendations. Symposium In February 1994, the committee hosted an invitational symposium that was attended by approximately 100 individuals representing the ombudsman community, patient rights’ groups, nursing facility administrators, public regulatory agencies, health policy analysts, and health care professionals. The symposium agenda is given in Table C.3. TABLE C.2 Provider Organizations that Participated in the February 4, 1994, Committee Meeting American Health Care Association Janet A.Myder, Director, Regulatory Systems Ronald E.Retzke, Organization Member American Association of Homes and Services For the Aging Susan Pettey, Director of Health Policy Shawn Bloom, Health Policy Analyst Evvie Munley, Health Policy Analyst Assisted Living Facilities Association of America Carol Fraser Fisk, Executive Director National Association of Residential Care Facilities George Cate, Executive Director Louis Iovieno, Vice President

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act TABLE C.3 Invitational Symposium Convened on February 3, 1994 Contributions of the Ombudsman Programs Toward Improving Long-Term Care 8:30 Welcome and Overview of the IOM Study Carroll L.Estes, Committee Chair, University of California, San Francisco Enriqueta Bond, Institute of Medicine Executive Officer Overview of the Symposium Rebecca D.Elon, Symposium Chair, Johns Hopkins Geriatrics Center 8:45 Keynote: Advocates for Quality in Long-Term Care Within the Larger Context of Health Reform Bruce C.Vladeck, Health Care Financing Administration 9:30 Examining the Effectiveness of the Long-Term Care Ombudsman Programs Moderator: Elma L.Holder, National Citizens’ Coalition for Nursing Home Reform Iris C.Freeman, Minnesota Alliance of Health Care Consumers Carol Scott, Missouri Long Term-Care Ombudsman Albert D.Buford, III, City View Medical Appeals Project Sara A.Best, Montgomery County, Maryland Commission on Aging 11:00 Commentary Barbara Frank, Connecticut Long-Term Care Ombudsman 11:20 Discussion 1:00 Dispute Resolution Methodologies: What Works Best for Whom? Moderator: Charles P.Sabatino, American Bar Association Commission on Legal Problems of the Elderly Curtis Decker, National Association of Protection and Advocacy Systems Michael Schuster, Legal Counsel for the Elderly 1:45 Discussion

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 2:30 Expanding Long-Term Care Ombudsman Services to Other Settings and Populations Moderator: Janice M.Caldwell, Texas Department of Protective and Regulatory Services Meredith Cote, Oregon Long-Term Care Ombudsman Marshall B.Kapp, Wright State University School of Medicine Virginia L.Dize, National Association of State Units on Aging John M.Newmann, Board of Directors, American Association of Kidney Patients 3:30 Discussion 4:00 Ombudsmen as Agents for Enhancing the Quality of Long-Term Care Services: What Is the Message, Who Is the Messenger, and to Whom Should the Message Be Delivered? William F.Benson, Administration on Aging Patricia S.Riley, National Academy for State Health Policy 4:45 A Word of Appreciation and Adjournment Rebecca D.Elon Technical Panel Meetings The technical panel was convened twice. At its first meeting, the technical panel agreed, in response to the committee’s request, to oversee production of two papers—one on conflicts of interest in the ombudsman programs and the other on expansion of ombudsman services to nonfacility-based settings. One panel member, Roland Hornbostel, wrote the paper on conflicts of interest. The panel asked Deborah Lower, consultant with David M. Griffith & Associates, Ltd., to write the paper on expanding the program. Sara Hunt, a member of the panel, provided oversight. The second meeting was convened in San Antonio, Texas, in conjunction with the Seventh Annual National Training Conference for State LTC Ombudsmen sponsored by the National LTC Ombudsman Resource Center. At that meeting, the technical panel reviewed and discussed the drafts of the two papers—both of which were circulated widely for review prior to the meeting. Approximately 40 conference attendees sat in on the discussions, and many provided suggestions and feedback.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Public Hearing The annual ombudsman conference in Texas provided the opportunity for a subgroup of the IOM committee to explore multiple perspectives on the critical aspects of operating an effective ombudsman program. Through a public hearing, the committee heard testimony from the Texas state unit on aging director, the Texas state ombudsman, and representatives from three local ombudsman programs. The public hearing agenda is Table C.4. TABLE C.4 Public Hearing Convened on April 24, 1994 What Makes a Long-Term Care Ombudsman Program Effective? Perspectives from Texas 4:45 Opening Statement Carroll L.Estes, Committee Chair Members Present: Janice Caldwell, Elma Holder, Rosalie Kane, John Skinner, Hollis Turnham 4:55 Managing a Statewide Ombudsman Program: When Do the Parts Make a Whole? Can the Whole Be Divided into Parts? Mary Sapp, Executive Director, Texas Department on Aging John Willis, State Long-Term Care Ombudsman, Texas Discussion 5:30 Panel: Local Ombudsman Perspective Beth O’Neill, Ombudsman, Area Agency on Aging of Southeast Texas; President, Texas Association of LTC Ombudsmen Mercedes Patterson, Ombudsman, Senior Citizens of Greater Dallas Pat Nuckols, Ombudsman, Tricounty Senior Nutrition Program Discussion 6:10 The Committee Welcomes Comments From All Substate Ombudsmen 6:30 Adjourn

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Background Information Commissioned Papers Seven papers were commissioned; Table C.5 lists the authors and titles of the papers. The committee made extensive use of the information presented in these papers in its report. Martha Holstein analyzed the ombudsman program from its historical and philosophical perspective using secondary data. Roland Hornbostel and Deborah Lower interviewed selected individuals in the course of writing their respective papers. Ruth Huber analyzed complaint-specific data already collected by 10 state ombudsman programs. James Kautz relied chiefly on secondary sources for his paper; these included annual reports TABLE C.5 Commissioned Papers and Authors Conceptual, Philosophical, and Historical Underpinnings of the Ombudsman Program Martha Holstein, M.A., Institute for the Medical Humanities, University of Texas Medical Branch, Galveston Conflict of Interest in the Long-Term Care Ombudsman Program Roland Hornbostel, J.D., Ohio Department of Aging, Columbus Analysis of Complaint-Specific Data from 10 State Long-Term Care Ombudsman Programs Ruth Huber, Ph.D., Kent School of Social Work, University of Louisville, Kentucky The Status of the Long-Term Care Ombudsman Programs James R.Kautz, III, Ph.D., Georgia Department of Human Resources, Atlanta Need for and Feasibility of Expanding Ombudsman Services to Older Adults in Non-Facility Long-Term Care Settings Deborah J.Lower, Ph.D., David M. Griffith and Associates, Ltd., Denver, Colorado Provider Attitudes Towards the Nursing Home Ombudsman Program Richard A.Lusky, Ph.D., Hiram Friedsam, Ph.D., and Stanley R.Ingman, Ph.D., Center for Studies on Aging, University of North Texas, Denton Long-Term Care Ombudsman Activity in Board and Care Facilities Charles D.Phillips, Ph.D., M.P.H.; Judith Wildfire, M.P.H., M.A; Linda Lux, M.P.A., and Catherine Hawes, Ph.D., Program on Aging and Long-Term Care, Research Triangle Institute, North Carolina

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act and preliminary FY 1994 LTC ombudsman program data from the AoA, including state-level information on organization, funding, and complaints. Kautz also asked all state ombudsmen to complete a brief questionnaire on descriptive items, such as frequency of and standards for routine visits to nursing facilities and board and care (B&C) homes, level of paid and volunteer staff resources, and percentage of time that state ombudsmen spend on selected duties. Thirty-seven states responded and gave the author permission to report the state-specific information in public documents. Charles Phillips and colleagues drew on their own studies for a paper on ombudsman activities in B&C facilities. The authors analyzed data obtained from a 1990–1991 survey they conducted for the AARP asking ombudsmen about their role in B&C. Additionally, they reported the results of a 1994 survey of ombudsmen in 50 counties in 10 states as part of a study of B&C facilities for the Department of Health and Human Services Office of Assistant Secretary of Planning and Evaluation (ASPE). As part of the ASPE study, Phillips and colleagues also interviewed staff and residents in approximately 530 B&C homes in the 10 states regarding their knowledge and use of the ombudsman program. To obtain information from providers, Richard Lusky and colleagues identified a sample of 24 facilities that were distributed across the 6 states that were the hosts for the IOM committee’s site visits (see below). Facilities were selected through a sampling plan that yielded one large (>100 beds) and one small (100 beds) proprietary facility and one large and one small nonprofit facility for each of the six states. In each facility, the researchers interviewed the administrator, director of nursing, and social worker by telephone about their perceptions of and experiences with the ombudsman program; they used a five-page interview schedule comprising 60 structured and open-ended items. Additionally, the researchers conducted two modified focus group sessions with providers. One group was made up of six members of the Texas Association of Homes for the Aged; the other was made up of eight members of the American Health Care Association. Overall, participants represented facility administrators, state association directors, and national leaders in the proprietary nursing facility industry. The committee also had access to a preliminary draft of a background paper on legal counsel for ombudsmen. The paper was prepared by Lori Owen and Michael Schuster under the auspices of the National State LTC Ombudsman Resource Center. Canvasses by the IOM Committee The IOM committee invited all 52 state offices of the LTC ombudsman to participate in the study through structured interviews. Lynn Chaitovitz, in

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act a consultant capacity, managed this activity for the committee. Using 16 open-ended questions, several with multiple subparts, Chaitovitz obtained information from 50 respondents (response rate, 96 percent); most respondents replied to all items. Twenty respondents were interviewed by telephone and the remaining 30 responded by mail. The IOM committee also invited directors of state units on aging to participate in the study through responses to a letter and a list of 11 open-ended items. Forty-one states (78 percent) responded. The committee also contacted a sample of local ombudsmen through a structured questionnaire process. Working from a list of 616 addresses provided by the National LTC Ombudsman Resource Center (the best available mailing list of local ombudsman programs), IOM study staff randomly selected 194 local addressees, representing 35 percent of the total number of local programs within each state. These local entities were invited to provide information to the committee through 10 specific issues. Of those entities, 104 (53 percent) provided written comments to some or all of the issues posed to them. With the help of committee member Rebecca Elon, LTC physicians attending the 1994 annual meeting of the American Medical Directors Association were asked to assess their knowledge and opinions about the ombudsman programs. Of the 800 registrants, 111 (14 percent) provided written responses to an 8-item form. With the help of committee member Elma Holder, 14 nursing facility consumer advocacy groups participated in structured telephone interviews conducted by a volunteer. The 11 open-ended questions sought the interviewees’ perceptions about the strengths and weaknesses of the ombudsman program, including its visibility to residents, families of residents, and the community. Site Visits The IOM committee conducted a series of six site visits, two-day or three-day trips to California, Colorado, Florida, Massachusetts, Minnesota, and Virginia. Together, these states constituted a purposive sample intended to maximize opportunities for the committee to learn about a wide range of state and local concerns and accomplishments of the LTC ombudsman program. The states varied in the organizational placement of state programs, the organizational placement of substate or local programs, the frequency of ombudsmen visits to LTC facilities, and the level of funding of the ombudsman program. The committee included two states (Minnesota and Virginia) that provided ombudsman coverage to home care consumers.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act In these site visits, committee members and staff visited a wide array of organizations, agencies, and individuals, including LTC facilities and facility organizations; state, regional, and local ombudsmen programs; sponsors of local ombudsman programs; nursing facility consumer advocacy groups; legal services groups; state regulatory groups such as licensing and certification programs and adult protective services; state and area agencies on aging; and other organizations. In all states, meetings were organized with volunteers serving in the ombudsman program. To provide uniformity among the site visits, each site visit team worked from a standardized interview guide. Altogether, site visitors spoke with more than 400 individuals. The site visits allowed committee members to learn about the diversity of programs in terms of operations, intensity, and funding throughout the country. All members attended at least one site visit, and the committee set aside extensive time at two meetings to discuss the findings from these visits. Other Consultations The committee took advantage of other opportunities to consult broadly about the LTC ombudsman programs. For example, at the invitation of the National State LTC Ombudsman Resource Center, several committee members participated in an “open-mike” session with state ombudsmen at the April 1994 training conference in Texas. Similarly, in response to an invitation extended by the National Association of State Units on Aging, some committee members and staff participated in a similar session with the state unit on aging directors as part of their annual conference in June 1994. Additionally, some committee members and staff met with the board and advisory council of these two organizations during the study. The committee also accepted the invitation extended by the American Health Care Association to meet with their Facility Standards Committee in February 1994. In all these contacts, the committee sought evidence on the effectiveness of the LTC ombudsman programs and clarity on what factors enhanced or hindered the programs’ effectiveness. Finally, as time and opportunity allowed, staff and committee met informally with other groups. For example, staff gave progress reports on the study at the 1993 annual meeting of the National Citizens’ Coalition for Nursing Home Reform and two monthly meetings of the Campaign for Quality Care Coalition. Several times throughout the study, the committee and IOM staff consulted with staff at Administration on Aging.

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