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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.



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

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 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 1   P.L. 102-375, §212, 106 Stat. 1195.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 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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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings nurses, other licensed or unlicensed health care professionals or paraprofessionals, or by trained or untrained family members or volunteers. 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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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 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 2   These 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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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 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.