Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings [1 ed.] 9780309572408

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings

Jill C. Feasley, Editor

Committee on the Quality of Long-Term-Care Services in Home and Community-Based Settings Division of Health Care Services INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS Washington, D.C. 1996

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

Copyright © 1996. National Academies Press. All rights reserved.

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ii National Academy Press 2101 Constitution Avenue, N.W. Washington, DC 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competencies and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. Support for this project was provided by the Administration on Aging, U.S. Department of Health and Human Services, under Grant No. 90-AR-0129. The views presented are those of the Institute of Medicine Committee on the Quality of Long-Term-Care Services in Home and Community-Based Settings: Defining the Issues and are not necessarily those of the funding organization. Additional copies of this report are available in limited quantities from: Division of Health Care Services Institute of Medicine 2101 Constitution Avenue, N.W. Washington, DC 20418 Copyright 1996 by the National Academy of Sciences . All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held in the Staatlichemuseen in Berlin.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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COMMITTEE ON THE QUALITY OF LONG-TERM-CARE SERVICES IN HOME AND COMMUNITY-BASED SETTINGS: DEFINING THE ISSUES ALAN R. NELSON,* Chair, Executive Vice President, American Society of Internal Medicine, Washington, D.C. MICHAEL J. DEMMER, Executive Vice President, Kensington Management Group, Inc., Golden Valley, Minnesota CARROLL L. ESTES,* Professor and Director, Institute for Health and Aging, University of California at San Francisco, San Francisco, California CHRISTINE GIANOPOULOS, Director, Maine Bureau of Elder and Adult Services, Augusta, Maine ROSALIE A. KANE, Professor, School of Public Health, University of Minnesota, Minneapolis, Minnesota DENNIS S. O'LEARY,* President, Joint Commission on Accreditation of Healthcare Organizations, Oakbrook Terrace, Illinois JAMES M. PERRIN, Associate Professor of Pediatrics, Director of Ambulatory Care Programs and General Pediatrics, Massachusetts General Hospital, Boston, Massachusetts RUBY VAN CROFT, Director of Community Relations, Visiting Nurses Association, and President, Capital Home Health Association, Washington, D.C. Study Staff KATHLEEN LOHR, Director, Division of Health Care Services JILL FEASLEY, Program Officer DON TILLER, Administrative Assistant RICHARD JULIAN, Project Assistant

*Member, Institute of Medicine

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

Copyright © 1996. National Academies Press. All rights reserved.

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iv

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PREFACE

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Preface

Most people want to live in places where they are comfortable and where they can be surrounded by familiar objects, friends, and family. Older and disabled individuals are certainly no different. Now, thanks to advances in medical care and innovative service delivery systems, this preference to remain in our own homes and residences is often a real possibility. Concerns exist, however, about the quality of the care that is provided in these settings. Countless allegations are heard about home care workers who steal from the frail, elderly clients for whom they are working. Newspaper stories detail accounts of negligence in residential care facilities geared toward serving individuals with Alzheimer's disease or of managed care organizations that refuse to cover the medical services needed for a disabled child to remain at home. At the same time, we know that an estimated 10 million Americans of all ages currently need some type of home and community-based long-term care (LTC) and that they—and we—can fairly safely assume that not all of the care being provided is of substandard quality. Complicating this picture is the rapid transformation of how such services are paid for and delivered. As this report is being written, Congress is considering major changes to Medicare and Medicaid—the two largest payers of home and community-based LTC. State programs, which have traditionally been the most innovative in their use of home and community-based services, are being reexamined and redesigned to address concerns about rising costs and growing populations. Private industry is expanding rapidly to meet the increasing demand for both home and residential care. What efforts should and can be taken to assure that this evolving world of LTC continues to improve the quality of the services it provides?

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

Copyright © 1996. National Academies Press. All rights reserved.

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PREFACE

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One thing is clear: Achieving quality care cannot be considered without also taking costs into account. Regulating and enforcing quality standards have financial implications for both providers and purchasers. At a time when budgets are being slashed, there is a temptation to divert money from quality assurance and improvement activities in order to underwrite basic services. At some level, it may not matter whether services are of high quality if one cannot afford them in the first place. The challenge for policymakers and the public will be to support both activities—cost containment and quality assurance—because this committee believes that poor quality care affects everyone: consumers, their families, care providers, and the communities in which they live. This report briefly examines the ways in which consumers and their families, payers, and providers try to ensure that the care received in home and community-based settings is of the highest quality possible. It sets out the conceptual framework and provisional design for a much larger Institute of Medicine study, which would explore these issues in greater detail and recommend ways to enhance current quality assurance and improvement systems. The motivation behind this proposed study is a desire to help inform both the public and its designated policymakers about the nature of the problems this nation is confronting in providing quality care to its older and disabled citizens, and, in so doing, to provide objective assessments of the feasibility of a range of possible responses. This committee hopes that the recommendations that emerge from the larger study will be of practical use to a wide range of audiences— consumers, caregivers, regulators, providers, and purchasers—and that the strategies developed or refined as a result of the study will encourage all parties to continue to be as innovative as possible in their quest for quality. Alan R. Nelson, M.D. Chair

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ACKNOWLEDGMENTS

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Acknowledgments

Special words of thanks are due to several individuals to whom the committee and staff are particularly indebted. Jo Harris-Wehling, formerly of the Institute of Medicine (IOM) and now with the Johns Hopkins Geriatric Center, began working on this project in 1990; she was responsible for successfully shepherding the initial study proposal through the IOM's internal approval procedures and the Administration on Aging's funding process. Karl Yordy, former director of the IOM's Division of Health Care Services, also worked on this project in the early 1990s and has continued to provide sage guidance and historical perspective to the study staff. Don Tiller and Richard Julian have provided unswerving support to the project, often despite having to juggle numerous other responsibilities. Michael Anderson, of the National Academy of Sciences' Meetings Office, went above and beyond his assigned duty to help produce the video shown at the committee's workshop. Finally, Kathy Lohr, current director of the Division of Health Care Services, provided a great deal of leadership and support during this planning activity. The committee is especially grateful to the following individuals who agreed to share their personal experiences and thoughts about the quality of home and community-based long-term care through video interviews: Lynne Aktar, June Brown, Warren Hardy, Erica Nash, Lenora Pennypacker, William Stokoe, and Etelka Wade. The video provided moving testimony to these consumers' courage, persistence, and delightful senses of humor.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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CONTENTS

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Contents

SUMMARY

1

1

INTRODUCTION AND BACKGROUND Introduction Origins of This Planning Activity Study Approach Definitions and Concepts Used in This Report Organization of This Report

7 7 8 9 9 11

2

LONG-TERM CARE IN HOME AND COMMUNITY-BASED SETTINGS Overview Trends in Home and Community-Based Care Summary

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CURRENT QUALITY ASSURANCE AND IMPROVEMENT STRATEGIES Quality Measures Types of Quality Assurance and Improvement Programs Assessment of Quality Assurance and Improvement Strategies Summary

29

3

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13 21 27

29 31 36 42

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4 FUTURE STUDY PLAN Study Concept and Key Questions Study Activities Conclusion 43 43 48 50

5 CONCLUSIONS 53

REFERENCES 57

APPENDIXES

A Legislative Mandate for IOM Studies 63

B Committee Biographies 67

C Workshop Agenda and Participants 71

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SUMMARY

1

Summary

Millions of Americans—both old and young—currently receive some type of long-term care (LTC) in their own homes or in residential care settings other than nursing facilities. For many—if not the majority—this embodies their emphatic choice to stay in their own homes and communities for as long as possible. Equally compelling to lawmakers and the general public eager to cut skyrocketing health care costs is the potential for home and community-based care to be a cost-effective alternative to institutional LTC. Yet concerns abound about the quality of service provided in all the settings that make up the LTC system. The quality of care in nursing facilities has long been questioned, resulting in numerous studies and regulatory efforts. This report, however, focuses on the quality of care provided within individuals' homes— however they define home—whether it is an apartment in a residential care facility, a room in their adult child's home, or the single family dwelling they have lived in for years. This report also briefly examines how the quality of that care is currently assured and improved, and presents a study plan for a much more thorough examination of these issues to be done by the Institute of Medicine (IOM). ORIGINS OF THIS PLANNING ACTIVITY The 1992 reauthorization of the Older Americans Act (OAA) directs the Secretary of the U.S. Department of Health and Human Services to arrange for the IOM to conduct two studies on the quality of care for older and disabled individuals. Despite the legislative mandate to conduct the studies, no specific funding has ever been appropriated for them. In the spring of 1995, the Administration on Aging decided to provide funding for the IOM to develop

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

Copyright © 1996. National Academies Press. All rights reserved.

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SUMMARY

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recommendations regarding the conceptual framework and provisional design for these two studies or for a single, comprehensive study. A planning committee was convened in July to explore the topic. This report represents the culmination of the committee's work, which was informed through a number of processes. These involved a thorough review of the relevant literature; presentations given at an invitational workshop held by the committee that included input from consumers, leading researchers, and state officials; and the actual deliberations of the committee and a discussion of members' expert opinions. OVERVIEW OF HOME AND COMMUNITY-BASED LONGTERM CARE As detailed in Chapter 2, more than 10 million Americans of all ages currently need some type of LTC to remain in their own homes or in other community-based settings (compared with only 2 million persons in institutions such as nursing facilities or chronic care hospitals). Contrary to most stereotypes, only a little more than half of the total population of home and community-based LTC users are elderly individuals (ages 65 and older). Most of the rest (twofifths) are working-age adults; children under age 18 represent a very small segment of the total population of these LTC users. Estimates of the number of residential care settings vary a great deal—from 18,000 to more than 65,000 settings serving 1 million residents, depending on the way in which such settings are defined. Several recent studies have found serious levels of disability among residents and suggest that the population is aging and experiencing profound levels of chronic disease, functional impairment, cognitive impairment, and chronic mental illness. Again, however, this varies according to the definition being used. Each year, billions of dollars are paid for LTC through a variety of funding sources. Along with substantial contributions from the recipients themselves and their families, more than 100 federal programs provide support of some sort for LTC. Several major government programs finance the majority of such care, however, including Medicare, Medicaid, OAA programs, Social Services Block Grants, the Supplemental Security Income and Social Security Disability Insurance programs, and a variety of state programs that are funded through individual states' general revenues. In recent years, several changes have been proposed for financing LTC. As this report is being written, Congress is considering major legislation to reform both the Medicaid and the Medicare programs. Changes to the Medicaid program include block granting the program to the states, allowing eligibility to be defined and determined by the individual states, and increasing the use of managed care. Medicare proposals also call for increasing the use of managed

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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SUMMARY

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care, as well as introducing greater cost-sharing requirements from high-income beneficiaries, and increasing the premiums and copayments paid by all beneficiaries. Several trends in recent years have changed the nature of home and community-based care and will continue to affect its development over the next several decades. Some reflect positive changes that will ultimately benefit everyone; others are much more troubling. Among the more important trends are shifts in attitudes about the provision of care; a growing population; changes in the supply and role of informal caregivers; heightened concerns about cost, access, and availability of services; and an increase in service delivery experimentation. Specific quality problems have also been noted regarding paraprofessional workers, as well as problems at the systems level, such as fraud and abuse, ethical and liability issues, and overregulation. However, very few data exist regarding the extent or seriousness of quality problems in home and community-based LTC, although allegations and anecdotes abound. CURRENT QUALITY ASSURANCE AND IMPROVEMENT STRATEGIES Chapter 3 comments on the structure, process, and outcome variables important to fully conceptualize quality of care; it also briefly discusses different types of quality assurance or improvement Programs that can be mounted externally by regulatory agencies or by private voluntary entities, as well as those that can be implemented by provider organizations themselves. Recently, the emphasis of regulation at all levels of government and industry has shifted to improving performance based on outcomes measurement. Although structure and process measures are still considered valuable, greater importance has been placed on ensuring that a regulated entity achieves a desired goal, instead of merely complying with basic capacity standards and procedural steps that presumably lead to the achievement of that goal. In the public sector, external quality assurance and improvement strategies might be carried out at the federal, state, and local levels through regulation and by private, voluntary accreditation. Other external strategies may involve structuring or financing care in ways believed to promote the quality of care; such steps might include the use of case management or managed care procedures of many sorts. Finally, an array of consumer advocacy or complaint resolution programs exist to offer some protections against poor care, fraud, and abuse. Internal quality assurance and improvement programs are developed and used by provider organizations of their own accord as a way to improve the systems and processes that help them realize the goal of providing excellent care that continues to improve over time. Embodied in many of these internal programs

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SUMMARY

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are the principles of “total quality management” and “continuous quality improvement.” These programs might include development of internal procedures and information systems, ongoing data gathering and analysis, staffing policies, case management, and consumer feedback mechanisms. The original legislative charge for the larger studies of the quality of board and care facilities and home care services called for an examination of whether existing quality, health, and safety requirements and their enforcement are (1) appropriate, (2) effective, and (3) adequate. This committee could not and did not seek to answer those questions. Rather, it has identified several problem areas in regard to the overall appropriateness, effectiveness, and adequacy of existing quality assurance and improvement strategies as they are directed at services rendered in home and community settings. In identifying these issues, the committee noted, with concern, how little information is presently available that would permit a quantitative examination of these topics. To answer the question of whether the “right” or appropriate strategies for measuring and managing the quality of resident or patient services are in place, one ought first to have a clear view of what quality is. Determining this can be difficult because consumers, caregivers, providers, and purchasers all have differing views of what constitutes quality. Differences between consumers or residents (on the one hand) and providers or purchasers (on the other) can be difficult to resolve, because of differences in preferences, in the kind of information brought to bear on the question, or in the criteria used to evaluate quality. Apart from how judgments about quality may differ, depending on who is doing the evaluation, is the issue of differences between intended and achieved effects. Some strategies to ensure quality may have quite the opposite effect in practice. Some strategies to protect the health and safety of residents may, even with all good intent, go too far and deny some individuals certain fundamental rights. Finally, assessing and improving quality involve costs. Decisions and tradeoffs have and will continue to be made about how much we as a society are willing to invest to achieve and sustain high-quality services, especially in these newer settings for services. A perennial debate, worth revisiting particularly in the home care context, is how best to invest resources in quality assurance activities in an arena widely believed to have limited resources for actual service provision. The committee found both encouraging and discouraging indications about whether existing quality assurance and improvement strategies are effective. For example, a recent study of board and care facilities found that in states rated as having extensive regulation, several quality indicators were higher than in states rated as being less regulated. Conversely, little evidence exists to show that the use of such common structural measures as professional credentials and minimum

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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SUMMARY

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training has an impact on outcomes measures in home and community-based care. A more significant issue, however, is that typical external quality assurance efforts are not established or conducted with the aim of steadily improving the average performance of providers over time—that is, of “shifting the curve upward.” In this regard, traditional approaches may or may not be effective in weeding out poor performance and ensuring that practitioners or others meet some minimal standards, but they are rarely effective in promoting sustained efforts at continual improvement within organizations or agencies. The question of whether quality assurance and improvement programs are adequate is difficult to answer because knowledge of the extent or seriousness of quality problems is extremely limited. What seems clear to this committee is that achieving good quality home and community-based services will require a variety of both external and internal programs. Taken together, well-founded regulatory requirements, sensible outside monitoring of performance, and solid internal programs that capitalize on such steps as periodic reassessment of the consumer's individualized care plan and appropriate use of data can all contribute to a much improved probability of consumers and residents receiving the highest level of quality possible. The challenge will be to develop means by which the appropriateness, effectiveness, and adequacy of these efforts can be defined and evaluated. FUTURE STUDY PLAN As noted earlier, the original OAA legislation called for two studies: one regarding the quality of board and care facilities, and the other regarding the quality of home care services. For both conceptual and practical reasons, the IOM committee concluded that a single study would suffice. It proposes therefore that one study look at quality assurance in both home care and residential care settings. The committee also decided to keep the current broad focus on all users of home and community-based LTC, rather than focusing only on either the elderly or the disabled population. The committee identified six major areas to be examined in the study: 1.

What key features define home care services and the consumers receiving them? What key features define residential care settings and the residents living there? To what extent do home care consumers and residents in residential care settings differ from or resemble each other? 2. What are the type, frequency, and severity of quality problems in home care and in residential care? 3. What factors enhance or impede the provision of quality care in home and residential care settings?

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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SUMMARY

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4. How can the appropriateness, effectiveness, and adequacy of current and proposed quality assessment and improvement strategies for home care services and residential care services be optimized? 5. What role should consumers and their informal caregivers play in defining and evaluating quality? 6. Are national minimum standards or model standards needed to ensure the quality of home and residential care? If so, what should they address or emphasize and how can compliance with these standards be encouraged and enforced? The committee laid out a study design to examine these key questions in a process that would be conducted over an 18-month period, guided by a study committee of 16 to 18 members. Studies at the IOM typically include the collection of existing data; analysis of that information; and the development of conclusions and recommendations that culminate in a published report. In addition to its final report, the planning committee concluded that the full study committee should prepare an interim report that defines the taxonomy of home and community-based services under study. Both reports would be reviewed by a separate and independent group of experts according to the procedures of the National Research Council and disseminated widely through a variety of means such as press conferences, briefings, and derivative publications. The IOM is well qualified to lead such a project. The potentially contentious nature and broad scope of the study point to the utility of the IOM model, which employs a study committee composed of experts from a variety of disciplines who hold a range of different perspectives. Recommendations are formulated after a rigorous process of seeking input from many sources and developing consensus among the committee's different stakeholders. The IOM's national reputation as an objective, scientific, and policy-relevant organization adds the considerable credibility necessary to influence policies at all levels of government. The product of this particular study is also intended to be of immediate, practical value to individual providers and consumers as well. The IOM was asked to examine these important issues several years ago, at a time when the sweeping changes confronting the world of health care and LTC had just begun to gather force. The concerns that led Congress to seek guidance on how best to address those changes remain just as vital today. So, too, do the opportunities to create meaningful differences in the way care is provided to countless older and disabled individuals and their families.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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INTRODUCTION AND BACKGROUND

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1 Introduction and Background

I just like it best at home. This wonderful little apartment has been my home for the last 48 years. There is nowhere else I'd rather be. It's where I feel most comfortable. I'm the one who's in charge around here and that's important to someone who's 91 years old like me. —Lenora Pennypacker, home care consumer

INTRODUCTION Millions of Americans—both old and young—currently receive some type of long-term care (LTC) in their own homes or in residential care settings other than nursing facilities. For many—if not the majority—this embodies their emphatic choice to stay in their own homes and communities for as long as possible. They feel it is the setting in which they can exercise the greatest amount of autonomy; it is the place where they will be treated with dignity and respect. Equally compelling to lawmakers and the general public eager to cut skyrocketing health care costs is the potential for home and community-based care to be a cost-effective alternative to institutional LTC. Yet concerns abound about the quality of service provided in all the settings that make up the LTC system. The quality of care in nursing facilities has long been questioned, resulting in numerous studies and regulatory efforts (IOM, 1986, 1994, 1995, in press). This report, however, examines the quality of care provided within individuals' homes—however they define home—whether it be an apartment in a residential care facility, a room in their adult child's home, or the single family dwelling they have lived in for years. Addressing these concerns in a way that is suitable to the incredibly diverse population that receives LTC services—from ventilator-assisted children to quadriplegic young adults to elderly individuals suffering from Alzheimer's disease—will be a monumental challenge. Adding to that challenge is the rapid and dramatic restructuring of the way care is financed and provided. The LTC landscape, which varies markedly from state to state, now must contend with managed care systems, block grants, spending caps, outcomes measurement, and report cards. How the landscape will look—even within the next few years— remains disturbingly unclear.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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INTRODUCTION AND BACKGROUND

8

This report identifies problem areas regarding the quality of care for individuals receiving home care services or living in residential care settings, briefly reviews the current strategies under way or planned to assess and improve that care, and assesses the likelihood that these strategies can significantly address the major areas of concern. It also provides recommendations on what further work should be undertaken by the Institute of Medicine (IOM) in this area. ORIGINS OF THIS PLANNING ACTIVITY The 1992 reauthorization of the Older Americans Act1 directs the Secretary of the U.S. Department of Health and Human Services (DHHS) to arrange for the IOM to conduct two studies on the quality of care for older and disabled individuals (Appendix A contains the legislative mandate). Specifically, the two studies are to examine (1) the quality of board and care facilities and (2) the quality of home care services. The legislation sets forth several specific areas of investigation. Among the more important are • the appropriate roles of federal, state, and local governments in ensuring the health and safety of patients and clients receiving home care services or living in board and care facilities; and • whether or not existing quality, health, and safety requirements, as well as licensing and certification requirements and their enforcement, are appropriate, effective, and adequate. Despite the legislative mandate to conduct the studies, no specific funding has ever been appropriated for them. In the spring of 1995, the Administration on Aging (AoA) decided to provide funding for the IOM to develop recommendations regarding the conceptual framework and provisional design for these two studies or for a single, comprehensive study. A planning committee was convened in July to explore the topic. Although AoA is sponsoring the current planning activity, the larger work will be of interest to many other parties. Within the federal government, several other departments have missions that include responsibilities pertinent to these two topics. Within DHHS, these include the Health Care Financing Administration, the National Institute on Aging, the Bureau of Maternal and Child Health, the Administration for Developmental Disabilities, and the Office of the Assistant Secretary for Planning and Evaluation. Other departments include the Social Security Administration and the Department of Education (in particular, its Office of Special Education and Rehabilitative Services and the National Institute

1P.L.

102-375, §212, 106 Stat. 1195.

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INTRODUCTION AND BACKGROUND

9

on Disability and Rehabilitation Research). The work will also be useful to members of Congress as they consider the various LTC reform bills currently before them. State officials, who ultimately must develop and implement the quality assurance systems to be used for most aspects of the LTC delivery system, will also benefit from the blueprint furnished by the study. The study will likewise be of value to a variety of patient and consumer advocacy groups, such as the American Association of Retired Persons and the World Institute on Disability, as they press for changes in the system. Private accreditors and service providers will be able to use the report to assess and possibly improve their ways of operation. Ultimately, however, it is hoped that consumers and their families will receive the greatest benefit by receiving the highest-quality services possible. STUDY APPROACH To oversee this planning activity, the IOM appointed an eight-member committee. It included individuals with expertise in LTC policy, regulation and accreditation, advocacy, quality assurance and improvement, and the provision of home and residential care services (see Appendix B). The committee was convened twice through conference calls and once as part of an invitational workshop held in Washington, D.C. (see Appendix C for the workshop agenda and participants). The committee's work was informed through a number of processes. These involved a thorough review of the relevant literature; presentations given at the invitational workshop that included input from consumers, leading researchers, and state officials; and the actual deliberations of the committee and the discussion of members' expert opinions. DEFINITIONS AND CONCEPTS USED IN THIS REPORT Long-Term Care Long-term care, broadly defined, encompasses a constellation of health, personal care, and social services used by people with disabilities over a sustained period of time. It includes high-technology medical services such as the administration of medicines, as well as low-technology assistance with activities of daily living (ADLs) or with household chores that the individual can no longer perform. It can be provided in a nursing facility, a hospital outpatient facility, an adult day care center, a group foster home, an individual's own home, or elsewhere. Depending on the services, LTC might be provided by registered

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INTRODUCTION AND BACKGROUND

10

nurses, other licensed or unlicensed health care professionals paraprofessionals, or by trained or untrained family members or volunteers.

or

Disability Disability has been defined as the “expression of a physical or mental limitation in a social context—the gap between a person's capabilities and the demands of the environment” (IOM, 1991, p. 1). Disability is often measured in terms of ADLs; these include tasks such as eating, getting in or out of a bed or chair, toileting, bathing, and dressing (Katz et al., 1963). A more expansive view takes into account whether a person can perform “instrumental” ADLs (IADLs); these are activities required for independence, such as preparing meals, grocery shopping, arranging for transportation, managing personal finances, taking medications, telephoning, and housekeeping. Measuring ADLs for young children is especially difficult and disability may more reflect variations from norms of physical and mental development than from the ability to perform certain daily activities. Home Care Home care is considered to be any kind of LTC service aimed at maintaining functionally impaired, disabled, or ill individuals in their home or other community-based setting (excluding a nursing facility). Importantly, this includes nonmedical services such as assistance with cooking, shopping, transportation, and laundry, as well as medical services such as those provided by a home health nurse or therapist. Also included are such services as rehabilitation services, respite services, and case management programs. The term “personal assistance services” is sometimes used within the disability community to describe these services that are rendered in the home. Residential Care Settings One difficult problem faced by the committee revolved around how to define a “board and care facility.” No single definition exists or is widely agreed upon. The legislation authorizing the IOM study uses a rather narrow definition, namely, that a board and care facility is any category of institution, foster home, or group living arrangement in which (as determined by a state) a significant number of recipients of Supplemental Security Income benefits are residing or

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INTRODUCTION AND BACKGROUND

11

likely to reside and that is regulated by a state.2 Each state, therefore, defines board and care in its own way; as might be expected, definitions vary widely across states. Even the terms used to refer to such a facility vary. Depending on the state, a board and care home might actually be called a personal care home, domiciliary home, rest home, congregate living facility, or assisted living facility. The committee decided that the definition used in this report and the planned study should be broadened to encompass the great degree of variation found in all of these types of facilities. It settled on the term “residential care setting” and defined it as any group residential facility for older or disabled individuals that is not licensed as a nursing facility. These facilities may provide personal care to persons with a desire or need for assistance with their ADLs. The term includes foster homes and small group or family homes. Home and Community-Based Care The expression “home and community-based care” is used repeatedly throughout this report. It refers to the full range of services and settings available to both older and disabled consumers living either in their own homes or in residential care settings. Quality of Care For purposes of this work, the committee defined quality of care as “the degree to which health and social services for individuals and populations increase the likelihood of desired health and social outcomes and are consistent with current professional knowledge.” This is a slightly revised version of the definition developed by the IOM in its study of Medicare quality assurance (IOM, 1990); the differences from the original are intended solely to highlight the social services aspects of the LTC world. ORGANIZATION OF THIS REPORT Chapter 2 provides an overview of home and community-based LTC. Beyond the demographics of the people who use such care, issues of who pays for and who provides care are explored. Trends—both promising and troubling —that are shaping the direction and delivery of home and community-based

2These regulations are found in Section 1616(e) of the Social Security Act (42 U.S.C. 1372e(e)), also known as the “Keys Amendments.”

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INTRODUCTION AND BACKGROUND

12

care are also discussed. Chapter 3 reviews the quality assurance and improvement strategies currently in use and assesses the extent to which they are appropriate, effective, and adequate. Chapter 4 details the study plan envisioned for a more comprehensive examination of the key issues and questions raised in the preceding chapters. Chapter 5 presents the committee's conclusion about why such an examination should be conducted and how the IOM is uniquely situated to carry it out.

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LONG-TERM CARE IN HOME AND COMMUNITY-BASED SETTINGS

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2 Long-Term Care in Home and CommunityBased Settings This chapter presents an overview of the current home and community-based long-term-care (LTC) system and discusses some of the major trends that are influencing that system. Important changes are occurring in both home care and residential care regarding who is being served, how services are financed, who provides those services, and how they are delivered. How these changes could ultimately affect the system of home and community-based LTC is briefly explored. OVERVIEW A great deal of information and research is available to answer questions about who uses home and community-based LTC, who pays for it, who provides it, and how it is delivered. This overview is not meant to be an exhaustive review of all that is known; rather, it provides basic descriptions of the key factors influencing the policy context the planning committee examined. People Who Use Home and Community-Based Long-Term Care More than 10 million Americans of all ages currently need some type of LTC to remain in their own homes or in other community-based settings (compared with only 2 million persons in institutions such as nursing facilities or chronic care hospitals). Contrary to most stereotypes, only a little more than

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FIGURE 2.1 Age distribution of individuals in community settings in need of long-term care. NOTE: Children are those under 18 years old, working-age adults are those 18 to 64 years old, and the elderly are those 65 years and older. SOURCE: GAO 1995c. half of the total population of home and community-based LTC users are elderly individuals (ages 65 and older) (see Figure 2.1). Most of the rest (twofifths) are working-age adults (people ages 18 to 64); children under age 18 represent a very small segment of the total population of these LTC users (GAO, 1995c). Just as the ages of the users of LTC vary greatly, so does the extent of their disabilities (IOM, 1991). Importantly, the presence of a disability does not automatically mean that a person requires outside assistance; an estimated 40.1 million Americans are living in the community with one or more disabilities because of a physical or mental health condition (Eustis et al., 1995). Some users, however, require 24-hour care that involves assistance with fundamental activities of daily living (ADLs) such as getting in and out of bed and administering complex medical procedures; others need only occasional help with such tasks as cleaning or going grocery shopping. Although all kinds of users can be found in both home and residential care settings, on the aggregate level some notable differences exist between the users in these two types of settings.

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Home Care The need for personal assistance with everyday activities increases with age. In 1990–1991, 50 percent of the civilian noninstitutional population 85 years and older needed such assistance compared with only 9 percent of the population aged 65–69 years (Bureau of the Census, 1995). An estimated 1.4 million people received home health care (as opposed to other types of long-term-care services such as personal assistance) in 1993. Statistically, this group tended to be elderly (about 75 percent were 65 years or older), female (about 65 percent), and white (68 percent) (Strahan, 1994). Residential Care Although estimates vary depending on how the term is defined, the total number of people residing in both licensed and unlicensed residential care settings may be as high as 1 million (Clark et al., 1994). Several recent studies (cited below) have found serious levels of disability among these residents; they suggest that the population is aging and experiencing profound levels of chronic disease, functional impairment, cognitive impairment, and chronic mental illness. One study found that half of the residents in residential care settings1 were over 65 years of age and another 43 percent were 22–64 years of age (Sirrocco, 1994). This breakdown changes dramatically depending on the type of setting examined. For example, in settings that were not for the mentally retarded, 70 percent of all residents were 65 years and older; in settings for the mentally retarded, only about 10 percent of the residents were 65 or older. Recent data imply that the level of impairment for residents in such settings2 may have increased over the past decade. Studies in the early 1980s found that less than 10 percent of residents had problems with bladder incontinence, whereas a 1993 study found that more than 20 percent had this problem (Hawes et al., 1994). Dittmar and Smith (1983) found only 3 percent of residents using wheelchairs and only 2 percent bed- or chair-bound in 1983, but again, 10 years later, Hawes and colleagues (1994) found that 15 percent of residents were using wheelchairs and 7 percent were bed- or chair-bound. Estimates of impairments

1 Sirrocco (1994) actually used the term “board and care home,” defined as “a residential setting that provides either routine general protective oversight or assistance with activities necessary for independent living to mentally or physically limited persons.” 2 The statistics cited in this section refer primarily to residents of board and care facilities. Little information is known collectively about residents of the much more broadly defined residential care settings covered in this report.

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LONG-TERM CARE IN HOME AND COMMUNITY-BASED SETTINGS

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TABLE 2.1 Government Funding for Home and Community-Based Long-Term Care, by Source, FY 1993 Source

Amount

Medicare

$10.1 billion

Medicaid

$7.4 billion

State programs

$702 million

Older Americans Act

$654 million

Social Services Block Grants Supplemental Security

Incomea

Social Security Disability

Insurancea

$500 million $23.6 billion $31.2 billion

a The exact amount of these funds that go specifically to support home and communitybased long-term care cannot be determined. It is certainly not the entire amount.

SOURCES: AoA, 1994; U.S. House of Representatives, 1995.

in mobility sufficient to limit physical activity outside the facility range from 31 to 44 percent (Dittmar and Smith, 1983; Mor et al., 1986). These studies also suggest a relatively high level of cognitive impairment. Hawes and colleagues (1994) found that slightly more than one-third of residents had moderate to severe cognitive impairments. Some studies indicate much higher percentages (Hawes et al., 1995). Likewise, studies consistently find that between 10 and 15 percent of residents in these settings experience developmental disabilities and that approximately 33 percent are diagnosed as having a chronic mental illness (Dittmar and Smith, 1983; Mor et al., 1986; Hawes et al., 1994). Payers for Home and Community-Based Long-Term Care Long-term care is paid for by many different sources. Along with substantial contributions from the recipients themselves and their families, more than 100 federal programs provide support of some sort for LTC. As shown in Table 2.1, however, several major government programs finance the majority of such care (NASHP, 1994). Funding is provided through Medicare, Medicaid, a variety of state programs that are funded through individual states' general revenues, Older Americans Act (OAA) programs, Social Services Block Grants (SSBGs), and the Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs. The Department of Veterans Affairs and the Department of Defense (through its Civilian Health and Medical Program of the Uniformed

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Services, or CHAMPUS) also provide funding for home and community-based LTC. Medicare provides home health benefits for individuals who are in need of skilled nursing care on an intermittent basis or who need physical or speech therapy. Medicare spent $10.1 billion on such care in 1993. Of concern to many policymakers is the recent rapid increase in Medicare home health payments. In 1988, Medicare spent only $1.9 billion on home health services. Thus, today's spending represents a 530 percent increase from just eight years ago (U.S. House of Representatives, 1995). This increase is largely accounted for by an increase in the intensity of service per participant and by liberalization of the eligibility rules, rather than an increase in the number of beneficiaries (Bishop and Skwara, 1993). Medicaid also provides a major source of funding for home and community-based LTC. In 1993, Medicaid outlays for such care totaled $7.4 billion. This amount is dwarfed, however, by the $36.3 billion that Medicaid spent on institutional LTC during the same period. On their own initiative, many individual states have also developed a variety of home and community-based LTC programs in addition to providing substantial amounts of matching funds for federal programs. Funding for state home and community-based LTC programs totaled $702 million in FY 1993 (AoA, 1994). The OAA funds a range of nonmedical in-home services, such as homedelivered meals and chore aides, for individuals age 60 and older. It also provides funding for the LTC ombudsman program, which provides advocacy and quality assurance for residents in board and care (B&C) facilities and, in a few states, home care consumers. In FY 1993, the OAA provided $654 million for home and community-based services (AoA, 1994). Social Services Block Grant funds can be used for such home and community-based services as case management, homemaker services, and transportation; each state is allowed to determine what services should be offered to whom. In FY 1993, about $500 million in SSBG funds were spent on such services (AoA, 1994). The federal SSI and SSDI programs provide cash assistance to aged, blind, and disabled individuals and to their dependent spouses and children. Many states supplement the federal SSI allotment given to these individuals. In FY 1993, funding for the SSI program equaled $23.6 billion and funding for SSDI equaled $31.2 billion (U.S. House of Representatives, 1995). Importantly, only a portion of the money provided through these two programs goes directly to pay for LTC services for older and disabled individuals. One of the important services paid for through these programs, however, is care provided to low-income residents of B&C homes. A very small amount of home and community-based LTC is paid through private LTC insurance policies. In 1993, these policies accounted for only 0.02

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percent of total LTC spending3 (U.S. House of Representatives, 1995). Possible reasons for this low level include consumers' lack of familiarity with the policies, their perceived lack of need (exacerbated by uncertainty over whether the government will eventually provide benefits duplicating those provided under the policies), and the relatively high cost of the contracts, especially for the older individuals most likely to purchase them (HIAA, 1992; Estes and Bodenheimer, 1993). Additionally, concerns have been raised about the design and marketing of long-term-care insurance policies, such as not selling policies to people with preexisting health conditions or disabilities and high-pressure sales pitches (Consumer Reports, 1991; GAO, 1993). In recent years, several changes have been proposed for the financing of LTC. Some proposals would use Medicare financing to pay for LTC benefits. Several other proposals call for changes in the tax laws, such as offering tax credits to family caregivers or providing special tax deductions to individuals who purchase private LTC insurance. All of these changes would result in substantially greater public subsidy of LTC. Concurrently, however, Congress is also considering major legislation that would turn the Medicaid program over to the states through block grants; such legislation would impose substantial spending limits on federal contributions to the program and would allow states to define and determine program eligibility individually. Various cost-cutting measures are also being considered for the Medicare program; these include increased use of managed care, greater cost-sharing requirements from highincome beneficiaries, and increases in the premiums and copayments paid by all beneficiaries. All in all, the outlook for governmental financial support of LTC services, especially for home and community-based care, is uncertain at best. Providers of Home and Community-Based Long-Term Care Home Care Home care services are provided by both informal caregivers such as family members and friends, and formal caregivers such as home health nurses and chore aides. Close to 67 percent of all home and community-based LTC consumers receive care from informal caregivers, 19 percent from a mix of informal and formal caregivers, and 14 percent solely from formal caregivers (Hing and Bloom, 1990). The type of care provided ranges from low-technology assistance such as housecleaning to high-technology services such as administering intravenous medications.

3 This figure for LTC insurance policies represents primarily nursing facility costs, not costs in home and community-based settings.

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As noted above, most home care is provided by informal caregivers. Eight of every 10 of these caregivers provide unpaid assistance an average of 4 hours a day, 7 days a week. Most of these informal caregivers are women (75 percent), and nearly one-third are over the age of 65 (Pepper Commission, 1990). Information on the number of formal home care workers, both professional and paraprofessional, is limited. In part, this results from the variety of employment settings. Home care workers may be employed directly by an agency (either certified or uncertified), listed in a referral registry, or hired independently by a consumer (Close et al., 1994). Nonetheless, some information does exist. In 1992, for example, approximately 14,000 home care agencies were in operation in the United States; slightly more than half of these agencies were certified to participate in the Medicare program (NAHC, 1993). To give a sense of the size of the workforce, in 1990, Medicare-certified home health agencies employed 146,958 full-timeequivalent workers including nurses, therapists, and personal care aides. Estimates of the total number of paraprofessional aides alone in the home care industry range from 300,000 to 500,000 (Feldman et al., 1990). Paraprofessional home care workers, who provide the bulk of formal home care, tend to be overwhelmingly female, to be disproportionately nonwhite, and to have low educational levels (Feldman et al., 1990). Even full-time workers have incomes that are barely above poverty level. Furthermore, very few workers enjoy fringe benefits such as health insurance, pensions, or sick or vacation pay, and most have irregular hours of work as well. Compared with health aides employed in hospitals and nursing homes, home care workers tend to be older and the least well paid (Crown et al., 1995). In some areas of the country and with certain types of agencies (primarily non-Medicare-certified for-profit agencies), problems with recruitment and high staff turnover exist (Capitman et al., 1994b). Residential Care Estimates of the number of residential care settings vary a great deal. In part, this arises from differences in the way such settings are defined. One recent survey found approximately 18,000 B&C homes in operation in the United States in 1991 (Delfosse, 1995).4 Most of these homes were located in the Pacific and South Atlantic regions of the country; almost half were located in urban areas.

4 For that study (Delfosse, 1995), a B&C home was defined as “a residential setting that provides either routine general protective oversight or assistance with activities necessary for independent living to physically limited persons (excludes those for the mentally retarded).”

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Another study found approximately 34,000 licensed B&C homes5 and an unknown number of unlicensed homes, although the number of unlicensed homes is thought to be large—perhaps equaling the number of licensed homes (Clark et al., 1994). Several other studies have provided estimates of as many as 65,372 residential care facilities, housing between 104,803 and 1 million residents, depending on how the facility is defined (ALFAA, 1995). Residential care settings vary tremendously in several ways: size (from 2 beds to more than 1,000), monthly charge (some charge on a sliding scale and can accommodate a low-income person with the ability to pay less than $100; others charge more than $4,000), and the range and intensity of services provided (from no services to daily nursing care). Some settings are targeted or marketed to younger persons with chronic mental illnesses or developmental disabilities, others are targeted exclusively to the elderly, and yet others serve a mixed-age population. The supply and use of both home care providers and residential care settings also varies enormously by region of the country; for example in the Midwest there is greater use of home care providers and fewer residential care setings compared to the West, where this trend is reversed—with a greater overall supply and use of residential care settings and less reliance on home care providers (Sirrocco, 1994). Staffing in residential care settings also varies a great deal depending on the setting type. In general, a typical staff might include administrative personnel, kitchen workers, housekeepers, and personal care aides (Kane and Wilson, 1993). Compared with staff duties in nursing facilities, staff responsibilities in residential care settings, particularly smaller facilities, are less complex and differentiated; a housekeeper may help prepare meals as well as provide transportation to medical appointments. A number of concerns have been raised about the qualifications, supervision, training, and turnover associated with staff in residential care settings (Hawes et al., 1995). Of special concern, given the increasing frailty of residents in these settings, is the administration of medications by inadequately trained or unqualified workers (GAO, 1992). Although a great deal of variation exists in the number and nature of residential care settings, one thing is certain: The number and use of these types of settings are growing rapidly. Financial analysts predict that the residential care industry will grow almost threefold within the next five years, from a $10- to $12-billion market in 1994–1995 to a $35-billion market in the year 2000 (ALFAA, 1995).

5 This estimate also excludes homes for the mentally retarded as well as other homes licensed by departments of mental health for special populations (Clark et al., 1994).

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TRENDS IN HOME AND COMMUNITY-BASED CARE Several trends in recent years have changed the nature of home and community-based care and will continue to affect its development over the next several decades. Some trends reflect positive changes that will ultimately benefit everyone; others are much more troubling. Among the more important are shifts in attitudes about the provision of care; a growing population; changes in the supply and role of informal caregivers; heightened concerns about cost, access, and availability of services; and an increase in service delivery experimentation. These trends are discussed in more detail below. Specific quality problems have also been observed in this area; these are noted briefly below and explored in more detail in Chapter 3. Shifts in Attitudes About the Provision of Care Our health care system has traditionally been based upon the goal of successfully diagnosing, treating, and curing illnesses. Most chronic and disabling conditions that lead to the need for LTC, however, do not fit easily into this framework. In the LTC context, some change in emphasis has been identified: from focusing on extending life for as long as possible to ensuring that the quality of life is the best possible for the individual who is ill or disabled. This shift has been especially notable in the treatment of younger individuals with disabilities. The passage of the Americans with Disabilities Act in 1990 provided the touchstone for a new conceptualization of how to treat disability; it seeks to maximize people's autonomy, to find the least restrictive environment in which the person can live, and to achieve a more consumer-directed system of care. This new way of thinking rejects the old view of disability as a social problem and of disabilities themselves as conditions to be cured. It seeks to view people with disabilities as people with problems that can be solved, if society provides sufficient support and access (Lewin-VHI, 1995a). However, in all aspects of LTC, the trend toward greater consumer empowerment is gaining sway. More programs are putting a priority on consumer-directed care. More providers are training consumers to perform self-care. These changes represent a significant departure from old schools of thought, but they also pose more challenges for consumers, providers, and society at large. Not the least of these relate to the quality of services and the quality of life achieved for individuals requiring noninstitutional LTC.

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Growing Population of Consumers The population most likely to need home and community-based LTC services is growing. Much of this growth will occur as the baby boom generation ages. While, today, 1 in 8 Americans is over the age of 65, by 2050 that ratio will change to 1 in 5, with the fastest period of growth occurring between 2010 and 2030 (Bureau of the Census, 1995). The growth of the “oldest old,” those 85 and older, will be the most dramatic; although they compose only 10 percent of the current elderly population, by 2050 they will make up 24 percent of the elderly population. As discussed earlier, the need for LTC generally increases dramatically with advanced age. More growth will occur in the population of LTC users as a consequence of medical innovations that allow individuals—both young and old—to live longer and to survive disabling accidents. New chronic and acute illnesses and disabilities, such as those arising from the acquired immune deficiency syndrome (AIDS) epidemic, also threaten to increase the overall need for LTC (IOM, 1990). The need for home and community-based care is also driven in part by changes in the financing and provision of health care generally. For example, changes to Medicare's prospective payment system in the 1980s caused more people to be released from hospitals back into the community “quicker and sicker” (Estes and Bodenheimer, 1993). Additionally, far more medical procedures are being done on an outpatient basis. High-technology equipment has been developed and adapted to allow individuals with medically complex conditions to be treated outside of hospitals and nursing facilities. For example, large, hospital-based ventilators have been replaced with smaller portable models that can be used at home, on the job, or at school (Perrin et al., 1993). Changes in the Supply and Roles of Informal Caregivers The majority of LTC services continue to be provided by informal caregivers such as family members and friends. However, a combination of demographic changes has resulted in a decrease in the number of these caregivers. Whereas in the past, elderly and disabled individuals typically were cared for in the home by family members, today this pattern is complicated by the reality of the geographic dispersion of families, overall smaller family size, and an increase in the number of people working outside the home (GAO, 1995c). Additionally, given the overall aging of the population, even when family members are nearby, they may not be able to care adequately for their relatives as a result of their own illnesses and disabilities. The push to care for sick and disabled individuals at home, supported by increasingly complex medical technology, has also meant that many informal

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caregivers are now responsible for learning and performing extremely technical procedures that once were the domain of medical professionals and other formal caregivers. This can be problematic when little follow-up or monitoring is provided after discharge or initial orientation. For example, a family member might receive some training on how to use a piece of medical equipment, such as a ventilator, when a patient is discharged from the hospital, but may not receive any follow-up to ensure that the equipment is being used and maintained properly. Often, systems of home and community care work well in the first several weeks after a person is discharged from a hospital. After that point, however, nurses, therapists, or other care providers may change, and the new staff may less well trained to care for caring for the person's needs. Equipment may malfunction, and complex multidisiciplinary services may break down. Without appropriate follow-up and monitoring, preventable problems could lead to rehospitalization or even death if they are undetected. Heightened Concerns About Cost, Access, and Availability of Services The federal deficit and tight state budgets, coupled with the exponential growth in health care spending, particularly for both institutional and home and community-based LTC, have increased the general public's and policymakers' desires to cut costs. As a result, policymakers have proposed solutions such as spending caps, block grants, limitations on provider fees and new nursing facility beds, and case management or gatekeeper systems. Importantly, almost every new federal or state proposal for Medicare and Medicaid has called for the increased use of managed care in an effort to decrease costs. The growth—both actual and potential—in the use of managed care for Medicare and Medicaid beneficiaries is dramatic. Although only 2.6 million Medicare beneficiaries are currently enrolled in the managed care risk contract program—about 7 percent of the total Medicare population—the rate of increase in the number of beneficiaries in these programs has averaged 23 percent over the past two years, and preliminary data suggest a growth rate approaching 30 percent in 1995 (GAO, 1995b). The potential for future growth is even greater; three-fourths of all Medicare beneficiaries now live in areas where they could enroll in a risk contract health maintenance organization (GAO, 1995b). Medicaid managed care programs have experienced similar growth; from June 1993 to June 1994, enrollment jumped 57 percent to 7.6 million recipients (Lewin-VHI, 1995b). States vary significantly in how many of their Medicaid beneficiaries are enrolled in managed care and what type of managed care they offer. In 1994, only three states (Arizona, Tennessee, and Oregon) paid a significant percentage of their Medicaid expenditures in capitation (Lewin-VHI, 1995b).

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This new and rapidly growing reliance on managed care for Medicare and Medicaid populations presents both opportunities for improvement in the delivery of care and dangers of a decrease in quality. On the one hand, some claim that such plans have the theoretical potential to enhance quality by better coordinating and monitoring the care a consumer receives. In some instances, managed care systems can offer more services than do regular fee-for-service arrangements; notable examples include the Social Health Maintenance Organization and Program for All-Inclusive Care for the Elderly demonstration programs (IOM, 1995). On the other hand, managed care also gives providers clear financial incentives to underserve and to limit the amount of care consumers receive. Shaughnessy and colleagues (1994), for example, compared home health services in fee-for-service and capitated environments and found patient outcomes were significantly better for fee-for-service recipients. The difference appeared to occur mostly as a result of capitated organizations' limitation on the number of home health visits. Additionally, few managed care organizations have experience in providing LTC services to older and disabled individuals (Lewin-VHI, 1995a). In part this has occurred as a result of legislation that specifically excludes these populations from managed care programs, as is often found in enabling legislation for state waiver programs. The reluctance of managed care organizations to market heavily to this service-dependent and high resource-utilizing population has also been given as a possible reason. Managed care also has a philosophical orientation that presents difficulties when applied to LTC. Although the advent of managed care has helped to switch the emphasis of the health care system away from acute care hospitals toward a delivery system centered on primary care physicians, yet another shift will be required to create a system that is consumer centered and home and community oriented (Shortell et al., 1994). With or without managed care, the desire to cut or contain costs will pose several problems. According to Families USA (1994), these trends are likely to increase the number of consumers who are denied access to services through more stringent eligibility requirements; who must be placed on already long waiting lists to receive what services are available; and who must do the best they can with the limited range of services that are currently available. Increase in Service Delivery Experimentation Increasingly, LTC is being provided in individuals' homes and communities rather than in institutions such as hospitals and nursing facilities (Bishop and Skwara, 1993). Certainly the desire to limit the skyrocketing cost of institutional LTC has contributed to this change. Equally important, however, has been the

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desire to deliver services in ways that acknowledge and respect consumers' preferences to remain in their own homes and communities as long as possible. The availability of affordable home care has provided an immeasurable increase in quality of life to many consumers and their families (Perrin et al., 1993). States have taken the lead in developing innovative home and communitybased LTC service delivery systems. Most states have received approval from the Health Care Financing Administration to waive federal Medicaid requirements in order to experiment with new delivery systems designed to prevent at-risk individuals from being institutionalized (Folkemer, 1994). While the target population may vary, most programs share common characteristics in their focus on functional eligibility criteria, emphasis on service delivery in the least restrictive setting, and increased reliance on consumer input in the care planning process. In the absence of a federal LTC policy, it is expected that states will continue to try different approaches to meet the supportive service needs of individuals with disabilities. Some states have aggressively pursued reform of their LTC programs; others have done virtually nothing (CRS, 1993). This varied level of innovation and experimentation has led to an LTC delivery system in the United States that is patchwork on the national level and fragmented even within states. As a result, no single “LTC delivery system” exists today; rather, literally hundreds of systems proliferate at all levels of government. This trend will likely continue into the foreseeable future. Growing Concerns About Quality Very few systematic data exist regarding the extent or seriousness of quality problems in home and community-based LTC. Allegations and anecdotes abound. Most of the information that is available focuses on concerns with paraprofessional providers (Kane et al., 1991). Problems at the systems level such as fraud and abuse, ethical and liability issues, program inflexibility, and overregulation have also been noted (IOM, 1990, 1994, in press). Problems with the work force are commonplace and deeply affect the quality of care that is provided. Consumers complain about workers who arrive late and leave early or, worse yet, do not show up at all. Many workers have cultural or language differences that make it difficult to establish a good relationship with consumers. Some have not received appropriate training on how best to handle the patients in their care. For instance, many home care workers receive training on how to care for geriatric clients, but they may have no idea of how to care for a quadriplegic adolescent. Naturally, concerns remain about workers who physically or verbally abuse or steal from clients. For many consumers, staffing inconsistencies and high turnover pose the most problems; quality of care suffers when there is a constantly changing cast of workers who have to be trained and

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oriented to the consumers' special needs (Perrin et al., 1993). This is especially true in residential care settings that depend heavily on outside contractors to provide personal care services (Kane and Wilson, 1993). Fraud or abuse detract from the quality of LTC services in a number of ways. Most directly, these losses mean that money that could be spent on care is not, thereby denying access to care for those in need. It also means that consumers may receive care from unlicensed or untrained staff. They might be billed for services they never received or might receive services they do not need (GAO, 1995a). Although the government has recently begun a major initiative— Operation Restore Trust—to curb these activities, fraud and abuse will likely continue to affect the quality of LTC adversely. Ethical and liability problems in home and community-based care are also of concern. How much risk should all the parties—consumers, providers, and payers—be allowed to assume? Should a provider be permitted to discharge or refuse to accept a consumer if, in the provider's view, the consumer needs more care than the consumer is willing to accept or is able to pay for? How should staff in a residential care setting deal with residents whose needs change beyond a level that can be accommodated? Parents of children and adolescents with disabilities describe problems with key transitions in family life such as school entry, adolescence, school graduation, or stressful times of family change (e.g., loss of a family member or change of employment). These are times when home and community care systems may need strengthening, yet home and community programs often lack the flexibility to change with changing family needs (Committee on Children with Disabilities, 1986). Finally, many consumers and their advocates worry that attempts to improve and protect consumers' health and safety may actually force a consumer to accept undesirable services. Many state and local governments, for example, have standards regarding admission and discharge of individuals in residential care settings. At the committee's workshop, participants heard testimony about a women who fell and broke her hip shortly after moving into a small group home for Alzheimer's patients. She was unable to walk and, therefore, was unable to get out on her own in an emergency. As a result, her husband was told by county regulators that his wife would be evicted and should be placed in a setting that could provide a higher level of care, such as a nursing facility. He fought the eviction—and won—because he was able to convince the judge that his wife would obtain better care in the group home where she would receive more oneon-one attention on a daily basis. Unlike the county regulators, he was willing to trade less protection for what he considered to be more desirable service overall.

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SUMMARY

This chapter gave a brief overview of the current home and communitybased LTC system and discussed some of the major trends that are influencing that system. In keeping with its overall charge, the committee now turns to an examination of the ways quality of care is assured and improved in that system.

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3 Current Quality Assurance and Improvement Strategies Quality assurance strategies seek to prevent, detect, and correct problems in the quality of services provided to individuals and populations. Quality improvement strategies attempt to improve quality through continuous study and modification of the services being provided. Although these approaches tend to have different quantitative techniques and philosophical perspectives, they are inextricably linked (IOM, 1990). Put another way, an effective quality assurance program is not an end in itself; rather, it is a means of maintaining and improving care (O'Leary, 1988). This chapter introduces elements of quality to be assessed and improved, briefly describes different types of quality assurance or improvement programs, and offers some of the committee's ideas about the appropriateness, effectiveness, and adequacy of existing strategies in the home and communitybased context. It is intended to provide a conceptual background for the issues and study questions posed in Chapter 4, but it does not purport to be an exhaustive review of this field. QUALITY MEASURES To assess the quality of service, three elements or types of measures need to be considered: structure, process, and outcomes (Donabedian, 1966, 1980). Structural measures refer to the organization and elements of the system of care. Process measures examine how the care is provided. Outcomes relate to the ultimate effects or results of the care rendered.

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Although choosing which criteria to examine can be difficult, assessing structural elements tends to be fairly straightforward. With respect to structure, one can ask the following: Does the facility meet appropriate fire, safety, and sanitation codes? Do staff have relevant or legally required professional credentials? Are adequate records kept? In home care and residential care, process elements are slightly more difficult to assess than is true for care rendered in hospitals or physicians' offices because the actual processes of care are invisible and cannot always be inferred from records. Moreover, the more socially oriented aspects of care concerning the way personnel relate to consumers are difficult to observe and measure. Nonetheless, regarding the processes of care, questions such as the following arise: Did a nurse visit the consumer in a timely manner? Was her assessment accurate and comprehensive? Did she follow the correct procedures for treating the consumer's condition? Did she inform the consumer about his or her condition? Did she treat the consumer with respect and involve him or her in the decisionmaking process? Outcomes can be viewed from the perspective of consumers and their families, care providers, and the community. Outcomes are somewhat more elusive to measure than is the case for structural or process variables, but arguably they are the most important aspect of quality. Outcomes measures prompt questions such as: Did the provision of care achieve the goals intended and expected? Was the patient, resident, or consumer satisfied with the services rendered and the results achieved? Recently, the emphasis of regulation at all levels of government and industry has shifted to improving performance based on outcomes measurement. Although structure and process measures are still considered valuable, greater importance has been placed on ensuring that a regulated entity achieves a desired goal, instead of merely complying with basic capacity standards and procedural steps that presumably lead to the achievement of that goal. This shift can be seen in the Clinton administration's initiation of a far-ranging series of regulatory reforms and in Congress' passage of the Government Performance and Results Act of 1993, which requires federal agencies to develop clear statements of what their regulations are intended to accomplish (GAO, 1995d). The shift to outcomes measurement has recently picked up momentum in the field of home and community-based care. The Health Care Financing Administration (HCFA) is sponsoring work on the development of an outcomesbased quality improvement approach, which has the capability to examine specific patient-level outcomes, for use by Medicare home health agencies and the Medicare system (Peter Shaughnessy, University of Colorado, personal communication, September 22, 1995). Similarly, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has recently restructured its survey and accreditation procedures for home health agencies to be much more focused on outcomes measurement (JCAHO, 1994). Many residential care

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facilities are also reviewing their practices to place a greater focus on achieving better resident outcomes (MAHA, 1994). TYPES OF QUALITY ASSURANCE AND IMPROVEMENT PROGRAMS Although the division is somewhat arbitrary and the lines are sometimes blurred, quality assurance and improvement strategies and programs can be classified in two ways: external programs and internal programs. Both types of programs are needed; neither is sufficient on its own to ensure that the highest quality of care is provided (IOM, 1990). Thus, in understanding how issues of measuring and assuring high-quality care in home and community-based environments might best be addressed, all parties (from patients and residents to providers and clinicians, researchers, payers, and policymakers) will need to take both external and internal quality assurance strategies into account. External Quality Assurance Programs External quality assurance programs are, in general, those implemented by outside agencies and entities such as the federal government or private accreditation organizations. They attempt to define and maintain at least minimum standards for quality; often, they can serve as a catalyst for provider organizations to establish or enhance their own quality improvement efforts. External programs typically follow a variety of approaches to establish criteria, set quality standards (structure, process, and/or outcome), assess quality, and correct problems. These approaches classically involve regulation—various kinds of licensure, certification, and accreditation; inspection and audit functions—and a focus on poor performance. In this context, external programs might be directed at home care agencies, at individually employed home care providers, or at occupations. In the public sector, they might be carried out on the federal, state, or local level, but the private, voluntary role is not insignificant. Other external strategies may involve structuring or financing care in ways believed to promote quality of care; such steps might involve the use of case management or managed care procedures of many sorts. Finally, an array of consumer advocacy or complaint resolution programs exists to offer some protection against poor care, fraud, and abuse.

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Federal and State Regulation Generally, home care and residential care are regulated separately. Some overlap occurs, however, because certain of the same types of services can be furnished in either setting. For example, home health care services are often provided in residential care settings. Home care. Both federal and state governments have enacted a number of laws and regulations regarding home care services. Some of the most far-reaching involve the conditions that agencies and providers must meet to become certified to participate in Medicare and Medicaid. Many states have also imposed their own licensure requirements on agencies and providers. As part of their licensing and certification duties, states conduct inspections and surveys. They can impose civil fines, order the suspension of payments, or decertify providers giving substandard care. The regulation of home care services varies tremendously from state to state. One indication of this can be seen in state licensure laws; in 1992, 39 states required compliance with their own licensure requirements in addition to federal requirements for Medicare-certified home health agencies, 35 states applied such licensure requirements to non-Medicare-certified agencies, and 20 required individual providers of home care (home care aides, homemakers, personal care assistants) to obtain a license from the state (NAHC, 1993). For example, Massachusetts and Ohio do not license home care agencies at all, whereas California licenses only those agencies that are certified to provide services to Medicare beneficiaries. Regulation also varies within states; for example, home health agencies in Minnesota are classified into one of five separate categories, each with its own set of standards. Residential care. Unlike home care, which receives a fair degree of federal oversight as a result of Medicare and Medicaid's role as a major purchaser of care, the regulation of residential care is primarily a state responsibility. In fact, federal regulation is limited to oversight of the Keys Amendments mentioned in Chapter 1, which simply require states to certify that board and care (B&C) facilities (as defined by the state) meet appropriate standards (as defined by the state). As a result, no uniform regulations and no single definition of what constitutes a B&C facility—let alone a residential care setting—exist. Even within a single state, multiple classes of facilities can exist, each with its own target population and its own set of rates and regulations concerning staffing, admissions, and standards of care (Hawes et al., 1993). A recent survey of assisted living entities (again, defined differently by each state) by the National Academy of State Health Policy revealed that 22 states had passed or issued regulations or otherwise implemented assisted living regulatory programs through Medicaid home and community-based waiver programs

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(Mollica et al., 1995). An additional six states have issued draft regulations or have legislation pending that would establish such a regulatory program. Throughout the country, many local officials such as county fire marshals, health inspectors, and building inspectors also exert considerable influence on and regulation of residential care facilities. The abovementioned survey also revealed that states have typically chosen one of three approaches in their regulation of residential care: institutional, housing and services, and services. Institutional approaches focus on the facility's physical structure and generally maintain strict admission and retention standards to exclude individuals who could qualify for care in a nursing facility. Housing and services approaches are designed for two purposes: (1) to address the needs of individuals who receive care comparable to that of a nursing facility in a residential care setting, and (2) to examine both the physical structure and the services provided. Services approaches require that the provider of services be licensed and certified, rather than the setting in which those services are provided. Voluntary Accreditation Two private national accreditation organizations have been granted deeming status for home health agencies by HCFA: JCAHO and the National League of Nursing. Agencies that receive accreditation through these organizations are deemed to have met, and in some places, to have exceeded the federal conditions for participation in the Medicare program. No similar accrediting organizations currently exist for residential care settings. Several groups, however, including the Assisted Living Facilities Association of America, the Association of Homes and Services for the Aging, and JCAHO, are considering implementing an accreditation program for such settings. Agencies and providers seek such accreditation for several reasons. First, it can provide important marketing benefits; consumers view it as a type of “Good Housekeeping Seal of Approval” by which they might distinguish better from poorer agencies and providers. Second, in some states, deemed status allows providers to bypass the state survey process, which they may regard as more intrusive, onerous, or unenlightening than the professional accreditation effort. Finally, many payers, such as managed care organizations, are now requiring private accreditation as a condition of participation in their own programs. As these market forces gain more power, agencies across the quality spectrum are increasingly seeking accreditation in an effort to remain competitive. According to JCAHO, the profile of agencies that it now accredits (which exceeds 4,100 organizations) is changing. Whereas a group in the past often achieved accreditation with commendations, agencies seeking and receiving

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accreditation now are increasingly accredited with some known deficiencies (about two-thirds of home care organizations in 1995; Dennis O'Leary, President, JCAHO, personal communication, October 17, 1995). Other Quality-Related Mechanisms Various mechanisms are available for advocacy and complaint resolution in both home and residential care settings. The long-term-care (LTC) ombudsman program is mandated to investigate complaints made by residents of B&C facilities and to advocate on their behalf. In a few states ombudsmen also investigate home care complaints, but the implementation of such programs has been extremely limited to date (IOM, 1994). Protection and advocacy agencies are more broadly charged with advocating for the rights of individuals with disabilities. In addition, many states operate consumer complaint hotlines, hold public hearings, and utilize appeals processes to detect and resolve consumer complaints. Under home and community-based waivers and state-funded programs, most states have developed well-articulated case management programs separate from the internal case management programs sometimes offered by home care providers (Justice, 1993). Such case managers (usually social workers, nurses, or teams of both) typically act as the consumer's advocate by assessing the client's need for service, developing a service plan, and monitoring the cost and quality of care given by providers, as well as client outcomes. Thus, case managers have the potential to assess and influence quality. Some programs consciously expect their case managers to perform this function (Kane and Degenholtz, 1995). A few states have developed computerized information systems used by their case managers to inform a quality assessment and improvement effort (Kinney et al., 1994.) Yet other efforts may be directed more specifically at certain types of caregivers. For example, the 1987 Omnibus Budget Reconciliation Act (OBRA 87) requires states to maintain a registry of nursing aides who have been found to have been abusive to patients. Internal Quality Assurance Programs Internal quality assurance and improvement programs are developed and used by provider organizations of their own accord as a way to improve the systems and processes that help them realize the goal of providing excellent care that continues to improve over time (JCAHO, 1994). Embodied in many of these internal programs are the principles of “total quality management” and “continuous quality improvement.” The procedures followed by organizations

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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with stable quality improvement programs include development of internal procedures and information systems, ongoing data gathering and analysis, staffing policies, case management, and consumer feedback mechanisms. Hospitals, hospital systems, and various types of managed care organizations tend to be in the forefront of implementing quality improvement programs. Little if any progress has been made in adapting these approaches fully to providers such as home care agencies or to settings such as homes or residential care settings, although some providers (primarily Medicare-certified or privately accredited home care agencies) have developed and begun implementing elements that are critical to successful quality improvement efforts. Many agencies and residential care settings develop internal guidelines or standard operating procedures to guide the way in which services are to be provided by their organizations. These steps increase the consistency of services and provide a benchmark against which to gauge the quality of service provision. Although the actual procedures followed may vary according to the needs and desires of the individual consumer, many organizations with good internal quality improvement programs develop individualized care plans for consumers that are based on input from the consumers, their families, and the various professionals and paraprofessionals involved with the consumers' care. Care plans are then monitored, through ongoing involvement as well as retrospective record reviews, to ensure that the plan remains suitable for the consumer's needs. Having a highly trained and motivated staff is one way for an organization to ensure that it has the basic capacity to provide quality services. Therefore, many organizations expend a sizable effort on such issues as staff recruitment, training, placement, and supervision. Nevertheless, in certain settings (e.g., hospitals and nursing facilities), the training of the nursing staff continues to be an obstacle to high-quality care (IOM, in press). For settings and providers in which organized quality assurance programs or staff development efforts are less well established, this situation doubtless is also an appreciable issue. Training in quality assurance and improvement is an important element of long-term staff development. Internally provided case management or utilization management typically plays a very different role from externally provided case management. In this situation, case management is used to coordinate and control the services given to a consumer. Although greater coordination is generally seen as beneficial, concerns arise when the dominant function of a case manager is to limit costs or find alternatives to costly services, rather than to fill the breadth of services that the consumer needs. The degree to which services are limited by a case manager may have a negative impact on the consumer's overall well-being. Conversely, internal case managers may want to maximize service use if they are being paid on a fee-for-service basis and might arrange unnecessary services.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

Copyright © 1996. National Academies Press. All rights reserved.

About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesetting-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution.

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ASSESSMENT OF QUALITY ASSURANCE AND IMPROVEMENT STRATEGIES The original legislative charge for the studies of the quality of B&C facilities and home care services called for an examination of whether existing quality, health, and safety requirements and their enforcement are (1) appropriate, (2) effective, and (3) adequate. Put another way, in terms of assuring and improving quality, the questions could be posed as follows: (1) Are the right things being done (appropriateness)? (2) Are those things being done well (effectiveness)? and (3) Are enough of those things being done (adequacy)? This committee could not and did not seek to answer those questions definitively. Rather, it has identified several problem areas in regard to the overall appropriateness, effectiveness, and adequacy of existing quality assurance and improvement strategies as they might be directed at services rendered in home and community-based settings. In identifying these issues, the committee noted, with concern, how little information is presently available that would permit a quantitative examination of these topics. Are Quality Assurance and Improvement Strategies Appropriate? To answer the question of whether the “right” strategies for measuring and managing the quality of resident or patient services are in place, one ought first to have a clear view of what quality is. In the broad area of home and communitybased care, this is often a more difficult issue to come to terms with than it might be in the general area of inpatient and outpatient medical care rendered in traditional settings. For one thing, in this broader arena, the services stretch beyond well-known medical, nursing, or rehabilitation care to a variety of other personal assistance and social services that have not traditionally been the focus of organized quality assurance programs. Thus, what exactly constitutes a set of appropriate quality assurance or improvement procedures for this growing area of care cannot be answered definitively by this committee. Moreover, as is true in health care as a whole, consumers, caregivers, providers, and purchasers all have differing views of what constitutes quality. One consumer may consider a service to be of high quality; another may regard it as poor. Differences between consumers or residents (on the one hand) and providers or purchasers (on the other) may be even greater, because of differences in preferences, in the kind of information brought to bear on the question, or in the criteria used to evaluate quality. Some programs have begun to develop frameworks and practical tools to help reconcile these differences, but much work remains to be done in this arena (New England SERVE, 1989). Apart from how judgments about quality may differ depending on who is doing the evaluation, there is the issue of differences between intended and

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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achieved effects. Some strategies to ensure quality may have the opposite effect in practice. For example, Florida requires that any resident of an adult congregate living facility who remains bedfast for longer than 14 days has to move to a facility that can provide a higher—and presumably more appropriate—level of care. For many residents who are then forced out their “homes,” however, this represents a significant decrease in quality. An approach that allowed more flexibility so that consumers could remain in the least restrictive setting could, in fact, prevent some individuals from receiving care in an institution. Some strategies to protect the health and safety of residents may, even with all good intent, go too far and deny some individuals certain rights established under the Americans with Disabilities Act and other laws. As a case in point, a recent study sponsored by the American Association of Retired Persons found that some residents of group residences for frail and disabled older persons have had their “housing choices and personal autonomy limited by overt acts of discrimination or by rules and regulations regarding health, safety, and land use” (Edelstein, 1995, p. iv). Thus, what on paper may appear appropriate as a quality assurance mechanism may, in the event of its implementation or enforcement, have entirely unintended consequences. How actually to implement quality assurance and improvement strategies can be a complicated proposition, particularly given the remarkable diversity of the population receiving home and community-based care. Substantive evaluation never relies on only one type of measure or approach. A variety of flexible strategies needs to be developed to deal with a variety of situations; one predetermined strategy may well not be appropriate for all circumstances. For instance, an approach that relies heavily on consumer input and feedback to monitor the quality of care may not be suitable when consumers are cognitively impaired, even if surrogates or proxies for those individuals are available. Similarly, functional assessment is different for children, adults, and the elderly (NRC/IOM, 1994), and this variation must be considered when developing appropriate outcomes measures to be used in quality improvement programs. Finally, assessing and improving care involve costs. Decisions and tradeoffs have and will continue to be made about how much we as a society are willing to invest to achieve and sustain high-quality services, especially in these newer settings for services. We will need to look particularly at the trade-off between the quantity of service that an individual may receive and the formal credentials demanded of those who provide the care. For example, to the extent that licensed nursing personnel are used to provide care (often considered a structural characteristic of high-quality care), the services will almost certainly be more expensive and the individual will have less flexible coverage at irregular hours (as is feasible with some unlicensed workers, including the self-employed). Another trade-off concerns the cost of quality assurance versus the cost of care itself. A perennial debate, worth revisiting particularly in the home care context,

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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is how best to invest resources in quality assurance activities in an arena widely believed to have limited resources for actual service provision.1 Are Quality Assurance and Improvement Strategies Effective? The legislation authorizing these studies directed the IOM to determine whether existing quality assurance and improvement strategies are effective in promoting good personal care. Again, a distinction between external (or regulatory) and internal quality management programs is relevant, and the committee found both encouraging and discouraging indications about this matter. For example, a recent study of B&C facilities by the Research Triangle Institute found that in states rated as having extensive regulation, several quality indicators were higher than in states rated as being less regulated (Hawes et al., 1995). These indicators include lower use of psychotropic drugs, lower use of medications contraindicated for the elderly, more provider training, and greater availability of social aids and supportive devices thought to improve overall quality. Recent studies about the effects of nursing home regulations enacted in OBRA 87 (based in part on the recommendations of the IOM study [1986] on reforming nursing home care) also suggest that these steps have improved the situation for residents of nursing facilities in terms of lower use of physical or chemical restraints, for example, and better attention to residents' rights (Phillips et al., 1993). Conversely, little evidence exists to show that using the common structural measures of professional credentials and minimum training has an impact on quality outcome measures in home and community-based care (Perrin et al.,

1 An example from Minnesota illustrates the dilemma. A state-licensed residential care facility provides home care services, but it is not certified to receive reimbursement from Medicare or Medicaid. Therefore, whereas private pay residents can receive services directly from the residential care facility, Medicare and Medicaid beneficiaries must receive services from a Medicare-certified home health agency in order to have the costs reimbursed. The facility charges are much lower than those of the agency. For example, a bath provided through the facility costs a resident $12 compared to $40 charged by the certified agency. Similarly, the facility charges residents $25 a month for medication supervision and management; the same services provided through the agency cost $50 a month. The additional charges for baths and medication supervision and management alone equal about $200 a month per resident on Medicaid or Medicare, or about $72,000 a year on a facility-wide basis (Michael Demmer, Executive Vice President, Kensington Management Group, Inc., personal communication, September 29, 1995).

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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1993).2 Part of the problem here is methodologic: Structural measures are proxies for actual assessments of process and outcome, and they are notoriously difficult to link directly to process and outcome variables with reliable, valid empirical data. It is clear, however, that requiring these standards to be met does raise costs and reduce the availability of services (Kane, 1995). Additionally, several studies have shown that consumers place greater value on the characteristics, rather than credentials, of their care providers; that is, they want people who are honest, reliable, and caring and who do a good job, not simply those who have a professional degree or have completed a training course (Eustis et al., 1993; Kane et al., 1994). In general, however, the traditional focus of much externally imposed regulation has been primarily on identifying and dealing with “outliers,” the small percentage of providers who give extremely bad service. Experts can argue about the extent to which such programs are effective in removing such practitioners or providers from practice. For example, considerable experience with the Medicare program (through both the Professional Standards Review Organization program and the Peer Review Organization [PRO] program) suggests an uneven pattern of success with respect to hospital care (IOM, 1990). There is little if any empirical evidence on the question for outpatient medical care or (especially) for home and community-based care. Problems have also been noted in the effectiveness of existing complaint resolution mechanisms. A recent study by the IOM (1994) noted barriers to the effectiveness of LTC ombudsmen working in B&C facilities, including limited access: It found that in most states ombudsmen are not a major presence in such facilities.3 As noted earlier, ombudsan involvement with home care consumers is extremely rare; given the likelihood of federal cuts to the ombudsman program, it is not expected to expand significantly. Sabatino (1992) found a low utilization of Medicare complaint hotlines and questioned their effectiveness as a complaint resolution strategy. The effectiveness of provider registries has also been questioned (IOM, in press). Although required by law, many are not updated regularly, include information only on cases that are resolved, and may not be utilized by employers who fear litigation from former employees. Most importantly, these registries cannot prevent abuse from happening in the first place.

2 More research on this subject has been done in settings such as hospitals and nursing facilities where clearer links between these structure and outcome measures have been determined (IOM, in press). 3 Ombudsmen had similar problems gaining access to nursing facilities until federal legislation was enacted guaranteeing them access. These same provisions also cover access to B&C homes, but because states regulate these homes independently, access has varied tremendously from state to state.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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A more significant issue, however, is that typical external quality assurance efforts are not established or conducted with the aim of steadily improving the average performance of providers over time—that is, of “shifting the curve upward.” In this regard, traditional approaches may or may not be effective in weeding out poor performance and ensuring that practitioners or others meet some minimal standards, but they are rarely effective in promoting sustained efforts at continual improvement within organizations or agencies. Most programs are “not in a position to identify exemplary providers or to offer assistance in reaching higher levels of quality of care” (IOM, 1990, p. 48). This is one reason that, in recent years, quality-of-care experts, organizations such as the JCAHO, and government agencies such as HCFA have all advocated and facilitated the adoption and implementation of rigorous quality improvement programs by provider organizations and facilities. Such programs cannot be regarded a priori as the answer to effective quality management, however. Apart from the usual barriers to effective quality improvement, internal programs may be of limited effectiveness because “conflict over authority, lack of commitment or expertise, concern about financial repercussions for individuals or of financial stress in the organization may result in inaction despite well-known and well-documented problems” (IOM, 1990, p. 48). However, health care providers in recent years have begun to develop far more sophisticated quality improvement and quality management programs than were known even a decade ago, and some are beginning to demonstrate real improvements in quality of care (Lohr, 1995). For example, nursing staff interventions in a continuous quality improvement context at an Intermountain Health Care hospital dramatically lowered the rate of decubitus ulcers among inpatients (Susan Horn, Ph.D., Senior Scientist, Institute for Clinical Outcomes Research, personal communication, July 10, 1995). Consumer satisfaction surveys are a well-known adjunct to quality improvement efforts by provider organizations, but their record with respect to effectiveness is not conclusive. In particular, the validity and utility of these surveys have been questioned for use with such a vulnerable and servicedependent population as consumers of LTC, who may be hesitant to provide potentially negative feedback about services on which they depend (Davies and Ware, 1988). Promising strategies to deal with this and other problems include assuring anonymity, rewording questions, and using in-person and telephone interviews rather than written surveys (Capitman et al., 1994a). Nonetheless, although consumer input is critically necessary, it is probably insufficient to judge the technical aspects of care.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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Are Quality Assurance and Improvement Strategies Adequate? As noted earlier, whether quality assurance and improvement programs are adequate should be judged in terms of whether enough of them are being conducted, recognizing that prior questions of appropriateness and effectiveness also need to be answered. Moreover, the issue of adequacy has to be evaluated in terms of the levels of quality problems (i.e., frequency, severity) that must be tackled. Thus, this question will be difficult to answer, because knowledge of the extent or seriousness of quality problems is extremely limited. A fundamental problem is that many home and community-based services are provided in isolated settings such as individuals' homes and apartments. Public and peer oversight is extremely limited or nonexistent for these environments and services, and virtually no systematic data have been collected about quality of care apart from those amassed through research projects. Even federal regulatory efforts that have had formal legislative mandates to collect and use quality-related information in the home health care arena, such as the PRO program for Medicare, have not developed as clear a picture of the types, frequency, and seriousness of quality problems in these settings as would be either desirable or necessary to comment on the adequacy of quality assurance efforts. As a general proposition, the adequacy of quality-of-care programs in this area can probably be called into serious question. Concluding Thoughts What seems clear to this committee is that achieving good quality of home and community-based services will require a variety of both external and internal programs. For example, given the infrequency of licensure and accreditation surveys, these programs on their own have little capacity to oversee how well care fits the needs of consumers who age in place or who have a change of status. Conversely, reliance solely on putative quality improvement efforts undertaken by provider groups or agencies with little formal training in quality measurement or little history of successful implementation of such programs would be foolhardy. Taken together, however, well-founded regulatory requirements, sensible outside monitoring of performance, and solid internal programs that capitalize on such steps as periodic reassessment of the consumer's individualized care plans and appropriate use of data can increase the likelyhood that consumers and residents receive the highest quality services possible. The challenge will be to develop means by which the appropriateness, effectiveness, and adequacy of these efforts can be defined and evaluated.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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SUMMARY This chapter has commented on the structure, process, and outcomes variables important to a full conceptualization of quality of care; it has also briefly discussed different types of quality assurance or improvement programs that can be mounted externally by regulatory agencies or by private voluntary entities, as well as those that can be implemented by provider organizations themselves. Given the original legislation's emphasis on the appropriateness, effectiveness, and adequacy of existing quality-of-care strategies in the home and community-based context, the committee has also offered its ideas on how these aspects of quality improvement programs might be considered and assessed. These points lay the groundwork for the conceptual framework, empirical questions, and recommendations about a further study that are taken up in Chapter 4.

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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4 Future Study Plan

The major purpose of the committee's planning activity involved the development of recommendations regarding the conceptual framework and provisional design for the two studies (or a single comprehensive study) mandated for the Institute of Medicine (IOM) in the 1992 reauthorization of the Older Americans Act (OAA). Even without that legislative imperative, the committee concluded that a thorough examination of ways to ensure the quality of home and community-based long-term-care (LTC) services is needed. This chapter poses critical study questions and describes some of the planned activities that would be carried out in such an examination. STUDY CONCEPT AND KEY QUESTIONS As noted, the original OAA legislation called for the IOM to conduct two studies: one regarding the quality of board and care (B&C) facilities, and the other regarding the quality of home care services. For both conceptual and practical reasons, this IOM committee concluded that a single study would suffice to look at quality and quality assurance issues in both home care and residential care settings. The committee also decided to keep the current broad focus on all users of home and community-based LTC, rather than focusing only on either the elderly or the disabled population. The committee's rationale for calling for such a combined study relates primarily to its desire to reduce the amount of duplication that already exists in these areas. In so doing, the committee does not want to discount the very real

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differences that exist in home and residential care and between older and younger individuals with disabilities; the differences are important and must be considered within their own contexts. Ultimately, however, the committee believes that the similarities among these services and populations are great enough to allow for a unified approach in addressing all the needs identified in the study. In fact, the committee believes such an approach will contribute significantly to efforts to eliminate much of the fragmentation and duplication that are the hallmarks of the current LTC system. The committee identified six major areas to be examined in the larger study, and these are explained below. The discussion also notes, in general terms, the types of information and data sources that might be used to address these questions. Key Study Questions 1.

What key features define home care services and the consumers receiving them? What key features define residential care settings and the residents living there? To what extent do home care consumers and residents in residential care settings differ from or resemble each other?

A clear understanding of the issues and individuals being studied is plainly necessary. What are the key demographic features of the population who need or desire such care? These could include age, sex, socioeconomic status, household structure, clinical and developmentally appropriate functional characteristics, including level of cognitive impairment and mental health status, and extent of isolation or community integration). What is the range of services needed or desired by that population? In what settings are those services provided? Who are the major providers (agencies and/or individuals) of such care? Who are the major purchasers of such care and how much does it cost? How do any of the above vary by state? What, if any, trends, can be identified? Although it is the sense of the committee that consumers of home care and residents of residential care settings face many of the same issues in terms of quality, committee members also felt that it was important to approach each population separately and then examine the overlap between the two. For example, under what conditions might those living in residential care settings actually receive services from home care providers? Under what conditions might a residential care setting better be considered a “home” in the sense of a private apartment, a “home” in the sense of a rooming house, or an institution? Are there differences between the two groups that are significant enough to warrant the use of different quality assurance and improvement approaches?

Best at Home : Assuring Quality Long-Term Care in Home and Community-Based Settings, National Academies Press, 1996.

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Data sources: As stated in Chapter 2, a great deal of information is available to answer these questions. They can be addressed in part by data obtained from sources cited in Chapter 2 and Chapter 3—that is, major federal data systems as well as a wide array of long-term research efforts. Such issues would be considered in the context of the conceptual framework for quality assessment and improvement laid out in Chapter 3. 2.

What are the type, frequency, and severity of quality problems in home care and in residential care?

As mentioned in Chapter 2, this committee was able to find very few systematic data to answer these questions at this time. The main reason is that many home and community-based LTC programs are just now being developed and implemented. As a result, not much data has been generated. Conversely, even within well-established programs, processes have not been put into place to track quality problems. Nonetheless, a fuller explication of the adequacy of the data and information systems that inform us about quality problems is needed in any case, so efforts to answer this question will still be of long-term value. In answering the question, the future study committee would also need to consider several other issues. They primarily include (1) whether these quality problems vary by provider or client characteristics and (2) what kinds of quality problems are anticipated in the future. Data sources: These types of issues can be explored with existing research data; federal and state regulatory and survey statistics; private accreditation survey information; and information from public hearings. In general, however, much more is known about the types of problems that exist than about their frequency or severity. This latter gap in our knowledge base is of concern; without the tools to learn about the problems consumers are experiencing, it is difficult to design systems to protect them and prevent the worst of these problems from occurring. Thus, this is an area for which the full committee might be expected to offer ideas for independent primary data collection and research. 3. What factors enhance or impede the provision of quality care in home and residential care settings? To develop quality assurance and improvement strategies it is important to have a good understanding of the forces that enhance and impede quality. It is equally important to know if a factor has no impact on quality. Many possible factors that could influence access to and quality of home care and residential care have been suggested, as implied by the discussion in Chapter 2 and Chapter 3. Among them are the financing and delivery of service,

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including capitation and managed care mechanisms; processes concerning staff (credentialing, preemployment and continuing training, supervision, pay scales, etc.); regulation and accreditation (including minimum standards); reliance on unpaid family caregivers; formal residency contracts and admission and discharge criteria for residential care facilities; and provider concerns about safety. Each of these factors would be examined and a determination made about its effect on quality. Data sources: Although a fair amount of research has and continues to be done on some of these issues, not all of them can be addressed with existing empirical information. However, information drawn from other areas (e.g. research on the regulation of nursing facilities and hospitals), as well as conclusions and recommendations from other studies (including those by the IOM) can be brought to bear on these questions. This can be done, for example, through commissioned papers or special panel presentations at a committee meeting. Additionally, the decisions regarding how to answer this particular set of issues will involve judgments. An IOM committee is in a unique situation to develop such expert judgments given its emphasis on hearing the views of multiple parties and developing consensus. 4. How can the appropriateness, effectiveness, and adequacy of current and proposed quality assessment and improvement strategies for home care services and residential care services be optimized? To answer this question, the first step would be to describe the many different vehicles that are already in place or proposed to assess and assure the quality of home care and residential care and then to evaluate them in terms of their appropriateness, effectiveness, and adequacy. The committee would also be asked to develop a fuller conceptual structure for the ideas of appropriate, effective, and adequate. Information from the work done to describe quality assurance and improvement programs would be evaluated within this conceptual framework to explore the appropriateness, effectiveness, and adequacy of these programs. Other issues to be explored include whether quality assurance and improvement strategies should vary when the care is provided in a home setting versus a residential care setting. Should these strategies vary by consumer condition (physical and cognitive) or diagnosis? If so, how and to what extent? How should and can the individual preferences of consumers for such things as control and safety be taken into account when designing a quality assurance system? How much emphasis should be placed on the process of care compared to the outcome of care? An important consideration for all the recommendations developed in response to this question will be to weigh carefully the relative benefits and costs

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of the strategies. Legal issues such as liability and delegation of duties by professionals such as nurses will also require special attention. Data sources: A considerable array of literature and program descriptions can be used in addressing these questions. Similarities and differences of such efforts around the country and for different populations would be examined. Much of this information has been developed for settings such as hospitals and large health care organizations, and the committee will need to consider carefully how to adapt that information to home and community-based settings. 5. What role should consumers and their informal caregivers play in defining and evaluating quality? Clearly, how the consumer views quality plays a central role and should be given high priority when developing quality assurance and improvement strategies. Questions arise when trying to implement that goal, especially when consumers' views on quality differ from those of providers and other professionals. Figuring out ways to reconcile these differing views will constitute an important element of these strategies. A different issue arises when family members are also care providers. What outcomes, if any, should be sought with respect to the well-being of such family caregivers? Should informal caregivers be regulated or held accountable for the services they provide in ways similar to formal caregivers and agencies? What decisions should be made when these caregivers are providing poor care? Complicating these issues is the increasingly common situation in which family members are compensated financially for the care they give. How does this dynamic change the way in which these issues should be studied? How might one expect it to change the answers to the above questions? A final question is the extent to which informed consumers are able to influence the quality of home care and residential care. Data sources: For home and community-based care, very little is known about this issue. However, it is clear that increasing consumer involvement is a principle desired by payers, providers, and consumers and their families alike. The committee, drawing on its members' broad perspectives and expert opinions, will be able to develop consensus about and to enunciate the principles regarding how to achieve greater and more meaningful consumer involvement. In addition, depending on the eventual scope and size of the study, to get more input on this issue directly from consumers, the full committee might use one or more standard IOM techniques, such as focus groups, site visits, or video interviews with consumers and their representatives, in addition to appointing a consumer advocate and a resident to the committee itself.

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Are national minimum standards or model standards needed to ensure the quality of home and residential care? If so, what should they address or emphasize, and how can compliance with these standards be encouraged and enforced?

Few people would disagree that receiving high-quality services is important. Similarly, few would argue against the proposition that there are certain minimum standards that no service should fall below. What may be more debatable is whether, on a more basic level, there should be a single definition of what, for example, constitutes a &ss home. Have some standards or definitions already been developed that could serve as models? Can a basic consensus be developed regarding what the goals and objectives of quality improvement activities in home and residential settings should be? If minimum standards are necessary and a consensus can be developed about what they should be, what are the appropriate roles of federal, state, and local governments, as well as private accreditation organizations, in monitoring and enforcing compliance with them? What are the incentives for states and providers to adopt such standards? Data sources: As stated earlier, several states and private accreditation organizations have begun to develop their own quality assurance and improvement programs and standards for home and community-based LTC. The committee, informed by its technical liaison panel, would examine the experience and data of these groups. These types of questions would also need to be addressed in part through generalizations from what is known about other health care settings, providers, and quality improvement programs. The IOM committee would have to debate these questions, taking into account the considerable differences of home and community-based LTC settings and these other programs. STUDY ACTIVITIES The planning committee laid out a plan to examine these key questions in a study that would be conducted over an 18-month period and guided by a committee of 16–18 members. Institute of Medicine studies typically include collection of existing data; analysis of that information; and development of conclusions and recommendations that culminates in a published report. In addition to its final report, the planning committee concluded that the full study committee should prepare an interim report that defines the taxonomy of home and community-based services under examination. Both reports would be reviewed by a separate and independent group of experts according to the procedures of the National Research Council and disseminated widely through

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a variety of means such as press conferences, briefings, and derivative publications. These elements are described below in more detail. Study Committee Nominees for committee membership are identified through a rigorous process designed to ensure that the committee members individually are distinguished experts in their fields and collectively represent a broad range of perspectives in the study area. The original legislation authorizing the two studies provided specific details about the composition of the study committees. IOM committees can also be advised by a technical liaison panel. Although the actual appointment of committee members and liaison panelists will be the sole responsibility of the IOM and the National Academy of Sciences, the characteristics listed below, derived in part from the legislative mandate, will be taken into account. Committee members will include: • health professionals such as physicians and nurses with LTC experience; • consumers of home care services or their representatives; • residents of residential care facilities (including privately owned facilities) or their representatives; • providers of home care services and operators of residential care facilities, including those who operate nonprofit facilities; • state officers with responsibility for regulating home care services and residential care facilities; • individuals with LTC experience, including nonmedical home care services and legal issues; • experts on the administration of drugs to older and disabled individuals receiving LTC services and on the enforcement of life-safety codes in LTC facilities; • officials of accreditation organizations; and • experts in the field of health services research. Data Collection The IOM committee will examine America's home and community-based LTC system in detail. It will attempt to see that system in action, as revealed by data and as perceived by those involved in it. Although it is anticipated that very little new primary data will be collected, much effort will be directed to synthesizing the large and somewhat disparate research literature, undertaking

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secondary analyses of existing databases, and weighing and debating the tradeoffs inherent in the policies and strategies evaluated. Specifically, the committee will review information ranging from demographic and epidemiologic statistics to agency budgets, program plans, statutes, and regulations. Where appropriate and more efficient, the full study could commission background papers or analyses. In addition, expert panels or targeted workshops could also be convened on specific topics to present and discuss the most current research and thinking. One valuable lesson learned from this committee's invitational workshop was the value of hearing the perspectives of actual consumers of home care services and residents of residential care facilities. To get such input for its workshop, the planning committee pioneered the use of videotaped interviews with consumers of home care services and residents of residential care settings. This could be done again with greater numbers of consumers and residents for the larger study. Additionally, public hearings will be held around the country to allow parties such as consumers, family members, advocacy groups, and industry associations to present testimony on their differing perspectives on the key study questions. Site visits will be conducted at the same time to give committee members further detailed, hands-on experience about the practical implementation and application of quality assurance and improvement strategies. Development of Recommendations and Products The intent of the more comprehensive study is to produce a set of products that will be scientifically sound and of practical value to a variety of audiences. Many of the recommendations from the larger study will be aimed at shaping federal, state, and local government policy. The planning committee feels deeply that the recommendations from the full project should be able to be applied in the “real world”: by providers who want to improve the quality of the services they provide in practical ways; by federal and state regulators and private accreditors who may wish to modify their standards accordingly; and by consumers and their advocates who can use the report to lobby for changes to ensure that the care they receive and desire is the best possible. CONCLUSION The quality of care in home and community-based settings for older and disabled individuals is a riveting issue. The motivation behind this proposed IOM study is a desire to help inform both the public and its designated policymakers about the nature of the problems this nation is confronting in providing quality care to its older and disabled citizens. The recommendations that emerge from

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the larger study should be of practical use to a wide range of audiences— consumers, caregivers, regulators, providers, and purchasers—and should encourage all parties to continue to be as innovative as possible in their quest for quality. As noted throughout this report, much is still not known about many of the issues that would be examined in a larger study. This committee urges that more primary research and data collection be done in this critical area. However, the committee also believes that the larger committee will provide a valuable contribution by translating findings from other areas such as quality improvement in hospitals and other acute care settings and by synthesizing what information is already available in the area of home and community-based LTC. The world of home and community-based LTC is evolving rapidly and the recommendations of the planned IOM committee will provide significant direction to the efforts to ensure the provision of high-quality care.

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5 Conclusions

The world of home and community-based long-term care (LTC) is undergoing a major transformation. At every level of government, policymakers and lawmakers are proposing fundamental changes in the way such care is financed and delivered. Private industry is expanding rapidly in this area to meet the needs and preferences of the growing population of potential users. At the same time, older and disabled individuals alike are beginning to demand higherquality services that better reflect their preferences. How the world of LTC will fare and what it will look like in the future remain open questions. Some observers have already begun voicing concerns about imminent calamity: care that is provided in a “black box,” out of the public's sight; a vulnerable population that is growing rapidly; caregivers pressured to provide more care with fewer resources; fraudulent companies and abusive workers exploiting defenseless consumers; the rapid move to managed care with clear financial incentives to underserve consumers and restrict access to services; and already-limited LTC services that are being cut back further or eliminated altogether. Other observers see the opportunity for vast improvement over today's situation. They welcome the move away from a service delivery system that they view as too medically oriented, one that places more emphasis on curing diseases than on caring for people's needs. A focus on consumers' rights and preferences would humanize the services that are provided and help ensure that issues such as privacy, personal choice, and autonomy are given a high priority. Managed care offers the possibility of better coordination and accountability of care being provided at a lower cost. These observers also foresee a quality assurance system that focuses less on outliers, or on getting rid of the arguably small percentage

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of truly bad providers, and more on the continuous improvement of quality by all providers. Theoretically, such a system would be better at preventing poor quality from occurring in the first place. Quality assurance and improvement programs to provide oversight to this rapidly changing system are only beginning to be developed and implemented. Chapter 3 identifies several problem areas in regard to the overall appropriateness, effectiveness, and adequacy of existing quality assurance and improvement programs. This committee hopes the programs that eventually evolve will both address the concerns and capitalize on the opportunities presented by this extraordinary transformation. It also hopes that the development of such programs will be guided not merely by the desire to avoid bad outcomes, but also by the goal of improving the care that individual consumers receive. Clearly, a balance of strong external and internal programs to ensure quality will be needed. Who will decide how to achieve a good balance? Consumers and their families have an obvious role in defining and achieving quality LTC services, and efforts need to be undertaken to ensure that their needs and preferences are at the heart of the evolving quality assurance and improvement system. Yet, families must also be considered in another dimension—in their roles as providers of care. Many issues remain unresolved regarding the extent to which government and other official organizations can apply judgements to the quality of the care provided by these informal providers. Government clearly has a role to play. In the words of one committee member, “Federal and state governments have continuing responsibilities for establishing and enforcing a minimum definition of quality and for fostering the conditions under which programs can be innovative, responsive to consumer preferences, and encouraged to exceed minimum standards” (Kane, 1995, p. 9). In lieu of federal action, some states are moving ahead on their own to develop carefully conceived and comprehensive quality assurance and improvement programs. The committee applauds and encourages their important efforts. At the same time, it recognizes that other states have done relatively little in this area. The study called for in this report will provide a rallying point and blueprint for all of them. The Institute of Medicine (IOM) is well qualified to lead such a project. The potentially contentious nature and broad scope of the study point to the utility of the IOM model, which employs a study committee composed of experts from a variety of disciplines who hold a range of different perspectives. Recommendations are formulated after a rigorous process of seeking input from many sources and developing consensus among the committee's different stakeholders. The IOM's national reputation as an objective, scientific, and policy-relevant organization adds the considerable credibility necessary to influence policies at all levels of government. The product of this particular study is also intended to be of immediate, practical value to individual providers and consumers as well.

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CONCLUSIONS

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The IOM was asked to examine these important issues several years ago, at a time when the sweeping changes confronting the world of health care and LTC had just begun to gather force. The concerns that led Congress to seek guidance on how best to address those changes remain just as vital today. So, too, do the opportunities to create meaningful differences in the way care is provided to countless older and disabled individuals and their families.

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O'Leary, D. Quality Assessment: Moving from Theory to Practice. Journal of the American Medical Society 260: 1760 , 1988. Pepper Commission. A Call for Action. Final report of the U.S. Bipartisan Commission on Comprehensive Health Care. Washington, D.C.: U.S. Government Printing Office, 1990. Perrin, J.M., Shayne, M.W., and Bloom, S.R. Home and Community Care for Chronically Ill Children. New York.: Oxford University Press, 1993. Phillips, C., Hawes, C., and Fries, B. Reducing the Use of Physical Restraints in Nursing Homes: Will It Increase Costs? American Journal of Public Health 83(3):342–348 , 1993. Sabatino, C.P. Substudy of Consumer Protection and Rights Issues in Home Care. Unpublished report. Washington, D.C.: American Bar Association, Commission on the Legal Problems of the Elderly, 1992. Shaughnessy, P.W., Schlenkler, R.E., and Hittle, D.F. A Study of Home Health Quality and Cost Under Capitated and Fee-for-Service Payment Systems. Vols. I and II. Denver: Center for Health Policy Research, 1994. Shortell, S.M., Gillies, R.R., and Anderson, D.A. The New World of Managed Care: Creating Organized Delivery Systems. Health Affairs 13(5): 46–64 , 1994. Sirrocco, A. Nursing Homes and Board and Care Homes. Advance Data. No. 244. Hyattsville, Md.: National Center for Health Statistics, 1994. Strahan, G. An Overview of Home Health and Hospice Care Patients: Preliminary Data from the 1993 National Home and Hospice Care Survey. Advance Data. No. 256. Hyattsville, Md.: National Center for Health Statistics, 1994. U.S. House of Representatives. The Green Book: Background Materials and Data on Major Programs within the Jurisdiction of the Committee on Ways and Means. Washington, D.C.: U.S. Government Printing Office, 1995.

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APPENDIX A

63

APPENDIX A Legislative Mandate for IOM Studies

OLDER AMERICANS ACT AMENDMENTS OF 1992 [Public Law 102–375, September 30, 1992 (106 Stat. 1195)] ******* TITLE II—ADMINISTRATION ******* SEC. 212. STUDY ON BOARD AND CARE FACILITY QUALITY. (a)

ARRANGEMENT FOR STUDY COMMITTEE.—The Secretary of Health and Human Services shall enter into an arrangement, in accordance with subsection (d), to establish a study committee described in subsection (c) to conduct a study through the Institute of Medicine of the National Academy of Sciences on the quality of board and care facilities for older individuals (as defined in section 102 of the Older Americans Act of 1965 (42 U.S.C. 3001 et seq.)) and the disabled. (b) SCOPE OF STUDY.—The study shall include— (1) an examination of existing quality, health, and safety requirements for board and care facilities and the enforcement of such requirements for their adequacy and effectiveness, with special attention to their effectiveness in promoting good personal care; (2) an examination of, and recommendations with respect to, the appropriate role of Federal, State, and local governments in assuring the health and safety of residents of board and care facilities; and (3) specific recommendations to the Congress and the Secretary, by not later than 20 months after the date of the enactment of this Act, concerning the establishment of minimum national standards for the quality, health, and safety of residents of such facilities and the enforcement of such standards. (c)

COMPOSITION OF STUDY COMMITTEE.—The study committee shall be composed of members as appointed from among the following:

(1)

NATIONAL ACADEMY OF SCIENCES.—The members of the National Academy of Sciences with experience in long-term care. The members so appointed shall include—

(A) physicians; (B) experts on the administration of drugs to older individuals, and disabled individuals receiving long-term care services; and (C) experts on the enforcement of life-safety codes in long-term care facilities. (2)

RESIDENTS.—Residents of board and care facilities (including privately owned board and care facilities), and rep

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APPENDIX A

64

resentatives of such residents or of organisations that advocate on behalf of such residents. Members so appointed shall include— (A) residents of a nonprofit board and care facility; or (B) individuals who represent— (i) residents of nonprofit board and care facilities; or (ii) organizations that advocate on behalf of residents of nonprofit board and care facilities. (3)

OPERATORS.—Operators of board and care facilities (including privately owned board and care facilities), and individuals who represent such operators or organisations that represent the interests of such operators. Members so appointed shall include—

(A) operators of a nonprofit board and care facility; or (B) individuals who represent— (i) operators of nonprofit board and care facilities; or (ii) organisations that represent the interests of operators of nonprofit board and care facilities. (4) OFFICERS.— (A)

STATE OFFICERS.—Elected and appointed State officers who have responsibility relating to the health and safety of residents of board and care facilities. (B) REPRESENTATIVES.—Representatives of such officers or of organisations representing such officers. (C) OTHER INDIVIDUALS.—Other individuals with relevant expertise. (d) USE OF INSTITUTE OF MEDICINE.—The Secretary shall request the National Academy of Sciences, through the Institute of Medicine, to establish, appoint, and provide administrative support for the study committee under an arrangement under which the actual expenses incurred by the Academy in carrying out such functions will be paid by the Secretary. If the National Academy of Sciences is willing to do so, the Secretary shall enter into such arrangement with the Academy. (e) INVOLVEMENT OF OTHERS.— (1) GOVERNMENT OFFICIALS.—The study committee shall conduct its work in a manner that provides for the consultation with Members of Congress or their representatives, officials of the Department of Health and Human Services, and officials of State and local governments who are not members of the study committee. (2) EXPERTS.—The study committee may consult with any individual or organization with expertise relating to the issues involved in the activities of the study committee. (f)

REPORT.—Not later than 20 months after an arrangement is entered into under subsection (d), the study committee shall submit, to the Secretary, the Speaker of the House of Representatives, and the President pro tempore of the Senate, a report containing the results of the study referred to in subsection (a) and the recommendations made under subsection (b).

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APPENDIX A

65

(g)

BOARD AND CARE FACILITY DEFINED.—In this section, the term “board and care facility” means a facility described in section 1616(e) of the Social Security Act (42 U.S.C. 1372e(e)). (h) AUTHORIZATION.—There are authorized to be appropriated to carry out this section $1,500,000 for fiscal year 1992 and such sums as may be necessary for subsequent fiscal years. SEC. 213. STUDY ON HOME CARE QUALITY. ESTABLISHMENT STUDY OF1 COMMITTEE.—The Secretary of Health and Human Services shall enter into an arrangement, in accordance with subsection (d), to establish a study committee described in subsection (c) to conduct a study through the Institute of Medicine of the National Academy of Sciences on the quality of home care services for older individuals and disabled individuals. (b) SCOPE OF STUDY.—The study shall include— (a)

(1) an examination of existing quality, health and safety requirements for home care services and the enforcement of such requirements for their adequacy, effectiveness, and appropriateness; (2) an examination of, and recommendations with respect to, the appropriate role of Federal, State, and local governments in ensuring the health and safety of patients and clients of home care services; and (3) specific recommendations to the Congress and the Secretary, not later than 20 months after the date of the enactment of this Act, concerning the establishment of minimum national standards for the quality, health, and safety of patients and clients of such services and the enforcement of such standards. (c)

COMPOSITION OF STUDY COMMITTEE.—The study committee shall be composed of members appointed from among—

(1)

individuals with experience in long-term care, including nonmedical home care services; patients and clients of home care services (including privately provided home care services and services funded under the Older Americans Act of 1965) or individuals who represent such patients and clients or organizations that advocate on behalf of such patients and clients; providers of home care services (including privately provided home care services and services funded under the Older Americans Act of 1965) or individuals who represent such providers or organizations that advocate on behalf of such providers; elected and appointed State officers who have responsibility relating to the health and safety of patients and clients of home care services, or representatives of such officers or of organizations representing such officers; and other individuals with relevant expertise.

(2)

(3)

(4)

(5)

(d) USE OF INSTITUTE OF MEDICINE.—The Secretary shall request the National Academy of Sciences, through the Institute of Medicine, to establish, appoint, and provide administrative support for the committee under an arrangement under which the actual expenses incurred by the Academy in carrying out such functions

1So

in Original. Should strike “STUDY OF” and insert “OF STUDY”.

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APPENDIX A

66

will be paid by the Secretary. If the National Academy of Sciences is willing to do so, the Secretary shall enter into such arrangement with the Academy. (e) INVOLVEMENT OF OTHERS.— (1) MEMBERS AND OFFICIALS.—The committee shall conduct its work in a manner that provides for consultation with Members of Congress or their representatives, officials of the Department of Health and Human Services, and officials of State and local governments who are not members of the committee. (2) INDIVIDUAL OR ORGANIZATION WITH EXPERTISE.—The committee may consult with any individual or organization with expertise relating to the issues involved in the activities of the committee. (f)

REPORT.—Not later than 20 months after an arrangement is entered into under subsection (d), the committee shall submit, to the Secretary, the Speaker of the House of Representatives, and the President pro tempore of the Senate, a report containing the results of the study referred to in subsection (a). (g) AUTHORIZATION.—There are authorized to be appropriated to carry out this section $1,000,000 for fiscal year 1992 and such sums as may be necessary for subsequent fiscal years. `

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APPENDIX B

67

APPENDIX B Committee Biographies

ALAN R. NELSON, M.D. (Chair), is currently the executive vice president of the American Society of Internal Medicine. Before assuming that role in 1992, he had a private practice in internal medicine and endocrinology for almost 30 years in Salt Lake City, Utah. He received his medical degree from Northwestern University. From 1964 to 1992, he was a clinical professor in the Department of Internal Medicine at the University of Utah College of Medicine. He was elected to membership in the Institute of Medicine (IOM) in 1975 and has served on numerous IOM committees. He is a former president of the American Medical Association (1989–1990) and of the World Medical Association (1991–1992), has served as a member of the Board of Commissioners of the Joint Commission on Accreditation of Hospitals (1983– 1987), and has received many other honors and awards. He is author or coauthor of numerous scientific or socioeconomic publications. MICHAEL J. DEMMER is the executive vice president of the Kensington Management Group, which oversees a group of assisted living facilities in Minnesota, North Dakota, and New Mexico. In that role he provides guidance and leadership to Kensington executive directors throughout the country. In addition, he participates in market research and financial feasibility studies for prospective new projects and oversees all budgeting, financial performance, marketing, and operational systems. He is also responsible for the overall management of Kensington Cottages projects, which specialize in the care of people with Alzheimer's disease and related dementias. Mr. Demmer serves as a member of the Board of Directors of the Minnesota Association of Homes for the Aged (MAHA); MAHA has also appointed him to represent it on the state

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APPENDIX B

68

level in developing the rules for residential care homes and new negotiated rate rules. He is also a member of the Assisted Living Facilities of America. Mr. Demmer graduated from St. Cloud State University with a teaching degree. CARROLL L. ESTES, Ph.D., is a professor in the Department of Social and Behavioral Sciences, School of Nursing, and director of the Institute of Health and Aging, University of California, San Francisco. She is a consultant to federal and state legislative committees, a member of the IOM, past-president of both the American Society on Aging and the Association for Gerontology in Higher Education, and current president of the Gerontological Society of America. Dr. Estes earned her doctorate in sociology from the University of California, San Francisco. Dr. Estes is the recipient of an honorary doctorate in human letters from Russell Sage College (1986), the American Society on Aging award (1988), and the Kent Award of the Gerontological Society of America (1991), among other honors. Her research interests include social policy and aging, health and long-term care, the nonprofit sector, older women, and generational equity. Best known for The Aging Enterprise and Political Economy, Health and Aging, she is author or coauthor of five other books and more than 100 articles. She served as chair of the IOM's Committee to Evaluate the State Long-Term Care Ombudsman Program (1993–1994). CHRISTINE GIANOPOULOS, M.P.A., has been director of the Bureau of Elder and Adult Services in Maine since 1987. The bureau administers all state and federally funded programs for the elderly; the adult protective and public guardianship programs; and Medicaid and state-funded community-based care services. Prior to that, she was a research associate at the University of Southern Maine's Edmund S. Muskie Institute on Public Affairs, specializing in the areas of vocational rehabilitation and independent living. She holds a B.A. in economics from the University of Pittsburgh and an M.P.A. from Syracuse University. Her professional and community affiliations include serving as president of the National Association of State Units on Aging, board member of the Maine chapter of the American Society of Public Administration, and board member of School Administrative District 52. She served on the IOM's Committee to Evaluate the State Long-Term Care Ombudsman Program (1993– 1994). ROSALIE A. KANE, D.S.W., earned her master's degree from Simmons College School of Social Work in 1965 and her doctorate from the University of Utah School of Social Work in 1975. She is a professor in the Institute for Health Services Research at the University of Minnesota and at the School of Social Work, and is on the faculty of the Center for Biomedical Ethics. She is nationally recognized for her research and scholarship on the organization and

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APPENDIX B

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financing of long-term-care services for elderly and disabled people. Her current research deals with home care quality, nursing home quality, assisted living programs as an alternative to nursing homes, Alzheimer's special care units in nursing homes, family caregiving for the elderly, case management, assessment, and ethics and values related to long-term care. Since 1988, she has headed a National Resource Center on Long-Term Care, funded by the Administration on Aging, which provides technical assistance, disseminates information, and does research and development to foster state and local community long-term-care programs. She served on the IOM's Committee on Nursing Home Regulation (1983–1985) and on the Committee to Evaluate the State Long-Term Care Ombudsman Program (1993–1994). DENNIS S. O'LEARY, M.D., is president of the Joint Commission on Accreditation of Healthcare Organizations. Prior to joining the Joint Commission, Dr. O'Leary served as dean for Clinical Affairs at the George Washington University Medical Center and vice president of the George Washington University Health Plan, an academic Health Maintenance Organization. Dr. O'Leary earned his B.A. from Harvard College and his M.D. from Cornell University. After two years of internal medicine training at the University of Minnesota Hospital, he completed his residency at Strong Memorial Hospital in Rochester, New York. Following his residency, he served an additional year as chief resident in medicine and fellow in hematology. He is board certified in internal medicine and hematology. Dr. O'Leary has been highly active in a variety of professional capacities. He has served as president and chairman of the board of the District of Columbia Medical Society, was a founding member of the National Capital Area Health Care Coalition, and was the first chairman of the Editorial Advisory Board for Medical Staff News. In addition, Dr. O'Leary has been a leading advocate in Washington and around the country for the inclusion of quality as an integral component of health care reform. JAMES M. PERRIN, M.D., is an associate professor of pediatrics at Harvard Medical School and director of the Division of General Pediatrics at the Massachusetts General Hospital. He is a member of the National Commission on Childhood Disability and the Disability Policy Panel of the National Academy of Social Insurance. He also chairs the American Academy of Pediatrics Committee on Children with Disabilities and the Public Policy Committee of the Ambulatory Pediatric Association. A graduate of Harvard College and Case Western Reserve University School of Medicine, he had his training in pediatrics at the University of Rochester and has been on the pediatric faculties of the University of Rochester and Vanderbilt University, with an additional appointment in the Institute for Public Policy Studies at Vanderbilt. His research has examined asthma, middle ear disease, children's hospitalization, and childhood

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APPENDIX B

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chronic illness and disabilities, with a recent emphasis on studies of the Supplemental Security Income program for children and adolescents. He coauthored Chronically Ill Children and Their Families and Home and Community Care for Chronically Ill Children. He served on the IOM's Committee on Maternal and Child Health under Health Care Reform (1994). RUBY VAN CROFT, R.N., is currently director of Community Relations for the Visiting Nurses Association for Washington, D.C., and suburban Maryland. She has held a variety of positions at the Visiting Nurses Association, including director of Special Programs, assistant director for Contracts and Grants, and assistant director for Services. She also serves as president of the Capital Home Health Association. In addition to her direct service responsibilities, for the past 15 years she has taught graduate-level management courses at several universities in the Washington, D.C., area. Ms. Van Croft received her nursing diploma from Freedmen's School of Nursing, a bachelor's degree from Columbia Union College, and a master's degree in Public Health Nursing from the University of Maryland.

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APPENDIX C

71

APPENDIX C Workshop Agenda and Participants

Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings September 22, 1995 INSTITUTE OF MEDICINE Washington, D.C. AGENDA 8:15 a.m.

Welcoming remarks Alan Nelson, Committee Chair William Benson, Administration on Aging

8:30 a.m.

Consumers' views on the quality of home and community-based services (video presentation)

9:30 a.m.

Quality assurance in home care Moderator: Christine Gianopoulos Robert Applebaum, Scripps Gerontology Center, Miami University Peter Shaughnessy, Center for Health Policy Research, University of Colorado

10:20 a.m.

Break

10:30 a.m.

Quality assurance in residential care Moderator: Michael Demmer • Catherine Hawes, Research Triangle Institute • Connie Baldwin, Assisted Living Concepts, Inc.

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APPENDIX C

11:30 a.m.

72

State innovation in home and community-based quality assurance Moderator: Rosalie Kane • Cathy Wiggins, Washington State Department of Social and Health Services • Eleanor Kinney, Indiana University School of Law • Cynthia Cook, Center for Nursing Research, BJC Health System

12:30 a.m.

Workshop adjourns

PARTICIPANTS Robert Applebaum Professor Scripps Gerontology Center Miami University Oxford, Ohio Connie Baldwin Director of Operations Assisted Living Concepts, Inc. Portland, Ore. William Benson Deputy Assistant Secretary for Aging Administration on Aging Washington, D.C. Elizabeth Clemmer Senior Coordinator Public Policy Institute American Association of Retired Persons Washington, D.C. Cynthia Cook BJC Health System St. Louis, Mo.

Malcom Davis Associate Director Malcom Davis Associate Director National Institute on Disability and Rehabilitation Research Department of Education Washington, D.C. Linda Demlo Director Center for Quality Measurement and Improvement Agency for Health Care Policy and Research Rockville, Md. Peter Eisler USA Today Arlington, Va. Donna Folkemer Senior Research Associate Intergovernmental Health Policy Project Washington, D.C. Ruth Gulyas American Association of Homes and Services for the Aging Washington, D.C.

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APPENDIX C

Catherine Hawes Research Triangle Institute Research Triangle Park, N.C. Steven J. Hendrickson Consultant Social Security Department International Union, U.A.W. Detroit, Mich. Robert Jenkens Public Policy Institute American Association of Retired Persons Washington, D.C. Diane Justice National Association of State Units on Aging Washington, D.C.

73

Edgar Rivas American Association of Homes and Services for the Aging Washington, D.C. Mary St. Pierre National Association for Home Care Washington, D.C. Peter Shaughnessy Director Center for Health Policy Research University of Colorado Health Sciences Center Denver, Colo. Irma Telzloff Administration on Aging Washington, D.C.

Leslie Kilgannon Director of Regulatory Affairs Assisted Living Facilities Association of America Fairfax, Va.

Liz Weiss Coordinator Home Care Support Program IONA Senior Services Washington, D.C.

Eleanor Kinney Professor and Director Center for Law and Health Indiana University School of Law Indianapolis, Ind.

Kristin Welsh Health Policy Researcher Senate Committee on Labor and Human Resources Washington, D.C.

Janet O'Keeffe Senior Analyst A.A.R.P. Public Policy Institute Center on Elderly People Living Alone Washington, D.C.

Cathy Wiggins Director, Residential Care Services Department of Social and Health Services State of Washington Olympia, Wash.

Marcia Ory National Institute on Aging Bethesda, Md. Mary Parker Executive Vice President Senior Housing Research Group Alexandria, Va.

John Wren Program Officer Pew Charitable Trust Philadelphia, Pa.

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