5

Improving Quality Through External Oversight

Organizations providing long-term care are staffed with professional, paraprofessional, and support staff, and often volunteers. In the final analysis, the quality and safety of long-term care is dependent upon these individuals' actions, but their actions can be and are influenced by external forces. These forces can provide guidance, often in the form of standards that establish parameters for structures and processes, and can set expectations for outcomes. External forces can also provide incentives, financial or otherwise, for specific actions that will affect access to and safety of care, and the quality of care and life in long-term care settings.

These external forces include formal quality oversight mechanisms, purchasers of long-term care, and families. This chapter focuses on three formal oversight mechanisms:

  1. regulatory oversight by federal, state, and local governments;

  2. consumer advocacy programs; and

  3. accreditation.

The committee recognizes that other forces—including mass media, care management and monitoring programs, and contractor standards set by purchasers—also influence provider behavior. The approaches of regulatory oversight, advocacy, and accreditation are somewhat different. Their relative strengths and weaknesses may make them differentially suited to different long-term care settings (e.g., nursing homes, residen-



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Improving the Quality of Long-Term Care 5 Improving Quality Through External Oversight Organizations providing long-term care are staffed with professional, paraprofessional, and support staff, and often volunteers. In the final analysis, the quality and safety of long-term care is dependent upon these individuals' actions, but their actions can be and are influenced by external forces. These forces can provide guidance, often in the form of standards that establish parameters for structures and processes, and can set expectations for outcomes. External forces can also provide incentives, financial or otherwise, for specific actions that will affect access to and safety of care, and the quality of care and life in long-term care settings. These external forces include formal quality oversight mechanisms, purchasers of long-term care, and families. This chapter focuses on three formal oversight mechanisms: regulatory oversight by federal, state, and local governments; consumer advocacy programs; and accreditation. The committee recognizes that other forces—including mass media, care management and monitoring programs, and contractor standards set by purchasers—also influence provider behavior. The approaches of regulatory oversight, advocacy, and accreditation are somewhat different. Their relative strengths and weaknesses may make them differentially suited to different long-term care settings (e.g., nursing homes, residen-

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Improving the Quality of Long-Term Care tial care, and home health care) and the individuals receiving care in them. They may complement each other in various arrangements such as that of deemed status, complaint investigation and mediation, or independent confirmation of measures of satisfaction of individuals in long-term care and their families. Beginning with the development of licensure for health workers in the nineteenth century to the current ongoing government initiatives to define and enforce quality standards, regulation and oversight have figured prominently in efforts to assess, protect, and improve the quality of health care. Basic quality standards define and specify the minimum acceptable qualifications for state licensure and for certification for participation in Medicare and Medicaid.1 This chapter focuses on the government's central role in setting and enforcing standards of quality for formal long-term care. It highlights the current status of the basic standards, the survey process for monitoring and assessing compliance, and the enforcement of the quality standards for nursing homes, residential care, and home health care. Throughout the chapter the committee provides suggestions and recommendations for further improvements at both the federal and the state levels. CENTRAL ROLE OF GOVERNMENT Through legislation, regulation, and judicial decisions, federal and state governments play a central role in the definition and enforcement of basic standards of quality for long-term care, particularly for publicly funded services and institutional care. In addition, regulations involving such matters as contracts or disclosure of information to consumers and the public are components of quality strategies based on consumer choice and quality improvement. Most federal regulations of long-term care are linked to federal funding of services through the Medicare and Medicaid programs, and are administered by the Health Care Financing Administration (HCFA) of the U.S. Department of Health and Human Services (DHHS). Both programs have requirements for participation that health care providers must meet to receive payment.2 Federal and state governments share regulatory responsibilities for long-term care. Overall, the federal government has a dominant presence in nursing home and home health regulation through certification for 1   Those who meet specified standards may also have to meet other conditions, for example, payment of a fee to actually secure a license. 2   Until recently, these requirements were known as “conditions of participation.”

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Improving the Quality of Long-Term Care Medicare and Medicaid participation. States, however, play the major role in regulating other kinds of long-term care. For example, they set licensure and other standards for various kinds of residential care arrangements. States also perform many of the certification procedures under contract with HCFA. Although basic standards for long-term care are often defined and enforced primarily through the legislative and administrative process, standards put forward from other nongovernmental sources are also important. Many professional societies, trade associations, accrediting bodies, and other organizations have set voluntary standards that operate in tandem with regulations through voluntary compliance. Voluntary standards are often intended to “raise the bar” by promoting and recognizing performance beyond a basic, legally established level. In some cases, an approved accrediting organization's standards can be “deemed” to meet certification requirements for participation in Medicare or Medicaid, as is the case with the certification of home health care agencies, discussed later in this chapter. The central elements of long-term care regulation at the federal or state level are: establishing quality and related standards for service providers; designing survey processes and procedures to measure and monitor actual conditions of residents or clients and to assess compliance; and specifying and imposing remedies or sanctions for noncompliance.3 These three elements of a regulatory system have been likened to “the legs of a three-legged stool” (IOM, 1986, p. 69), with each leg equally important to the effectiveness of the system. In order to assess compliance with federal Medicare and Medicaid requirements, HCFA relies on a survey and certification process, which is administered by state licensing and certification agencies. HCFA's ten regional offices are charged with the oversight and monitoring of the state survey and certification efforts for nursing homes and home health agencies. In recent years, reporting of assessments of compliance with standards and sanctions for noncompliance has become prominent as consumer groups and others have pressed for more complete public reporting. To the extent that such reports accurately reflect quality problems, they can be useful both for policy makers and for people facing personal decisions about long-term care. Moreover, the enforcement of govern- 3   Remedies and sanctions are used interchangeably throughout this report to refer to enforcement actions against providers failing to comply with regulatory requirements.

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Improving the Quality of Long-Term Care ment standards does not depend solely on periodic inspections by regulators or on self-enforcement by the regulated. Complaints from residents, family members, facility or agency staff, formally appointed ombudsmen, and others may help identify violations and other problems that regular, formal inspections and reporting systems may miss. Many complaints and concerns related to basic standards of quality may be voiced directly to providers, ideally prompting a constructive internal response. Beyond this “oversight-by-complaint” role, family, friends, and other visitors to the long-term care setting also provide social and practical support to those using long-term care, help paid caregivers better understand the perceptions and preferences of those they serve, and build links between long-term care and the larger community. Arguments for and Against Regulation Major goals of long-term care regulation have been described as (1) consumer protection, specifically, ensuring safety, quality of the care received, and legal rights of consumers, and (2) accountability for public funds used for care (IOM, 1986). With government accounting for 61 percent of nursing home and home health care expenditures (Braden et al., 1998), it has a responsibility to hold providers accountable for fiscal integrity and for the quality of care provided to beneficiaries. Medicare and Medicaid requirements of participation for nursing homes and home health care services serve both goals. States also have an obligation under their police power functions to provide oversight over the public health and safety. Most policy makers acknowledge a particular need for federal and state regulation of long-term care. The reasons are several: Regulatory protection is essential given the significant vulnerability of many of the people using long-term care, including the very old and frail, the very young, and those with dementia, mental illness, and developmental disabilities. Many people with severe chronic or disabling conditions are highly dependent on others and unable to protect themselves from abuses and neglect by caregivers. Moreover, many have no immediate family members, friends, or advocates who are able to oversee their care and protection. Individuals needing long-term care frequently have multiple diagnoses and chronic conditions that require a wide array of medical and nursing services, medications, and treatments. Although some individuals have the knowledge and skills to direct their own care, others do not. Those using long-term care rely heavily on nonprofessional and para-

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Improving the Quality of Long-Term Care professional workers, which typically means they rely on workers who have little training or expertise in providing care. Much long-term care is relatively invisible, either because it is provided in the home or because it is provided in facilities without much community observation. Users of long-term care often lack choice of providers or services, which limits the effectiveness of market forces in ensuring quality. On the basis of the above, a strong argument can be made for an active government role in defining and enforcing basic standards of quality for long-term care providers. In addition, ensuring their enforcement protects those using long-term care from neglect, abuse, and mismanagement. Critics of regulation as a dominant strategy for protecting and improving the quality of long-term care present several arguments. During public meetings, providers criticized overreliance on regulatory strategies contending that: It may encourage mediocrity. They believe that too many providers concentrate narrowly on minimum requirements instead of striving for providing quality care. Regulation may create barriers to innovation. What may be a necessary rule for those not motivated or able to provide quality care, could be an obstacle to others seeking creative ways to improve the quality of care and life and autonomy of those using long-term care. There is a possible danger for regulation to proliferate excessively. For example, regulators concerned about marginally performing institutions and egregious instances of poor quality of care may be tempted to multiply structure and process regulations without regard to their effectiveness or costs. They believe that regulations focus too single-mindedly on protection and safety as objectives. Other values such as the quality of life or autonomy of those receiving care may be underemphasized. With regard to federal regulation of nursing homes, however, the nursing home reforms in the Omnibus Reconciliation Act of 1987 (OBRA 87) actually changed the focus from a nursing home's ability to provide care to the quality of care provided. OBRA 87 requires nursing homes participating in Medicare and Medicaid to comply with extensive standards and these standards include ensuring various residents' rights related to admission, transfer, and discharge, and the right to be free from restraints and abuse, and to promote residents' quality of life. The regulations also focus more than before on processes of care and resident out-

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Improving the Quality of Long-Term Care comes. In common with most complex human endeavors a perfect regulatory system is likely to be beyond human reach. Nonetheless, it is important for policy makers, regulators, and advocates to consider and weigh both the expected benefits and the expected burdens of regulations. Moreover, by listening to the concerns of those subject to regulation as well as the beneficiaries of regulations, policy makers may be able to develop effective, yet less costly and less resisted ways of achieving their goals. The challenge is to design and implement a system that does what it is intended to do at an acceptable cost. BASIC STANDARDS OF QUALITY In principle, some basic standards for long-term care could be developed that apply regardless of the setting or provider of care. In practice, however, most standards are designed for specific categories of providers or services. In general, it may be useful for policy makers, providers, consumer advocates, and others to think about standards applicable across various care settings. Such thinking may become increasingly necessary if concepts of consumer-centered and -directed care are to be developed. Indeed, regulatory standards related to outcomes have become an increasingly important objective in long-term care. This approach, however important, is beyond the scope of what the committee is able to address in this report. Reflecting the differences in current regulatory programs in various long-term care settings, this chapter focuses on selected settings separately. As is typical of most long-term care issues, nursing homes have been the focus of most attention in standard-setting and enforcement activities. This again reflects a long history of concern about abuse, neglect, and poor quality of care in nursing homes and public concern about this frail and vulnerable group of long-term care users, who are subject to the greatest degree of provider control over their lives. The discussion that follows focuses on nursing homes, residential care facilities, home health care, and home care and other home and community-based services. Nursing Homes Both federal and state governments employ regulation as a strategy to protect quality of care in nursing homes. The federal government has defined standards or requirements for provider participation in Medicare, and Medicaid relies primarily on the states for assessment. The federal government retains authority to enforce compliance with nursing home standards of care, but generally delegates enforcement authority to states for other health care providers. States also independently regulate

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Improving the Quality of Long-Term Care nursing homes, for example, by licensing them to do business in the state. A few nursing homes operate only under state regulation because they choose not to seek Medicare or Medicaid reimbursement, but nearly all facilities depend on such reimbursement and, therefore, have all, most, or some of their beds certified. This study was not intended to replicate or update the Institute of Medicine's (IOM) 1986 report by producing a detailed analysis of the implementation of that report's recommendations or generating another set of comprehensive recommendations about nursing home regulation. This committee generally endorses the directions set forth in the 1986 report and in the legislative reforms enacted in 1987. During 1998 and 1999, however, new reports and investigations of serious problems in nursing home quality and government regulation demanded the committee's serious attention. As context for the discussion of these problems, a brief review of the 1986 IOM report and subsequent nursing home legislation is useful. The 1986 IOM Report on Nursing Home Regulation In its 1986 report on nursing home quality, the IOM committee noted “serious, even shocking, inadequacies” in the enforcement of then-current nursing home regulations. It identified “large numbers of marginal or substandard nursing homes that are chronically out of compliance when surveyed . . . [and that] temporarily correct their deficiency . . . and then quickly lapse into noncompliance until the next survey” (p. 146). The report identified problems in four broad areas: (1) attitudes of federal and state personnel about enforcement objectives and processes; (2) federal rules and guidelines for states; (3) variation among states in policies and procedures; and (4) resources to support enforcement activities. It also addressed other problems with existing procedures for interpreting survey findings, weighting or scoring facility performance on individual standards, and aggregating performance on individual standards to determine whether a facility is in compliance with a condition of participation. It also addressed problems of the predictable timing of annual surveys and the reliance on record reviews and staff interviews, rather than interviews and observation of residents, to determine quality. The report proposed that regulations “require, whenever possible, assessment of the quality and appropriateness of care and the quality of life . . . being provided residents, and the effects on residents' well-being” (IOM, 1986, p. 71). It called for new standards in three areas: residents' rights, quality of life, and resident assessment. The 1986 IOM report proposed regulatory reform to focus the survey and certification process more on persistent offenders; to clarify federal objectives and rules by improving training, reporting, and oversight activities for states; and to

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Improving the Quality of Long-Term Care establish a wider array of sanctions related to the seriousness of problems discovered. The report and subsequent legislation made clear that government's role was one of enforcement and not consultation. The framework also called for less reliance “on unguided professional judgments by surveyors” in determining what constitutes good care for residents with differing service needs (IOM, 1986, p. 71). Nursing Home Reform Act of 1987—Setting Standards for Care The Nursing Home Reform Act, a part of OBRA 87, created the most far-reaching changes in nursing home regulation since the Medicare and Medicaid programs were created in 1965. It was supported by a broad coalition of consumer, professional, and nursing home industry representatives. The legislation was generally based on the detailed recommendations of the IOM committee (1986), and delineated five major components addressing (1) resident rights, quality of life, and quality of care; (2) staffing and services; (3) resident assessment; (4) federal survey procedures; and (5) enforcement procedures (Harrington, 1998). For example, it created a new outcome-oriented survey process with two options—a standard survey and an extended survey. The standard survey required a stratified sample of residents (based on the characteristics or casemix of residents) for examining medical, nursing, and rehabilitative care; dietary services; social activities; sanitation; infection control; resident rights; and physical environment. In facilities found to be providing substandard care during the standard survey, an extended survey was to be applied, with a larger sample of residents, intended to uncover the causes of substandard care. Continuing past practice, OBRA 87 required HCFA to contract with state agencies to survey nursing homes to certify their compliance with Medicare and Medicaid requirements. Consistent with the changes in the standards, enforcement was to focus on both processes and outcomes of care. The new inspection procedures were, however, to go beyond “paper compliance” to investigate processes and outcomes of care; interview residents, families, and ombudsmen about their experience in the nursing home; and directly observe residents and care processes. Surveys were to be unannounced and conducted every 9 to 15 months following the initial survey (but no sooner than 12 months on average for all facilities taken together) to give survey agencies some flexibility to link survey timing to past performance and also make it easier to create more unpredictable scheduling of survey visits. States could also initiate a survey in response to a resident or other complaint at any time. Resurveys were authorized after any change of ownership. The new standards and survey procedures were implemented

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Improving the Quality of Long-Term Care through a series of regulations and transmittals published by HCFA in its State Operations Manuals.4 The first regulations implementing the act took effect in 1990; the last regulations (those related to enforcement of standards) were implemented only in 1995. The regulations established 15 major categories for compliance to cover the structure, process, and outcomes of nursing home care with specific requirements for each category. 5 Additionally, OBRA 87 requires nursing homes to provide certain services, including nursing, dietary, physician, rehabilitative, dental, and pharmacy services. It also included requirements for administrative standards including nursing aide training, a medical director, and clinical records. The OBRA 87 standards for residents' rights included privacy, freedom from physical and mental abuse, restricted use of physical or chemical restraints, and opportunities to file grievances. The process of care and the environment should promote residents' quality of life, and services should help residents attain or maintain the highest practical level of physical, mental, and psychosocial well-being. The requirement that well-being be maximized “implied that improvements in health and functional status be achieved, when possible,” which shifted the focus away from custodial care toward rehabilitation (IOM, 1996a, p. 134). OBRA 87 was notable for requiring individual resident assessments and care plans for each resident described in the previous chapter. The committee concluded that these basic standards of quality set forth in OBRA 87 are generally reasonable and comprehensive. As discussed in Chapter 3, research studies suggest that these standards may have contributed to improved care and outcomes for nursing home residents. Definitive, rigorous evaluation of their continuing impact on quality of care and outcomes is necessary. State Survey Process To monitor and assess compliance by nursing homes with Medicare and Medicaid requirements for participation, HCFA relies on a survey and certification process administered under contract by state agencies. As specified by OBRA 87, nursing home surveys gather information 4   The regulations were issued in 1988, 1989, 1991, 1992, and 1994, and the transmittals were included in the State Operations Manuals (HCFA, 1995a–c). 5   The categories are (1) resident rights; (2) admission, transfer, and discharge rights; (3) resident behavior and facility practices; (4) quality of life; (5) resident assessment; (6) quality of care; (7) nursing services; (8) dietary services; (9) physician services; (10) rehabilitation services; (11) dental services; (12) pharmacy services; (13) infection control; (14) physical environment; and (15) administration (HCFA, 1995a–c).

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Improving the Quality of Long-Term Care through facility visits; observations of residents; reviews of records; and interviews with residents, family members, and facility staff and management. Thus, assessments are not dependent solely on facility records and reports. HCFA has developed standardized forms, sampling methods, and survey procedures to ensure the reliability, accuracy, and comparability of state surveys of nursing homes. In a further effort to achieve consistency, HCFA's State Operations Manual (HCFA, 1999c), including the Interpretative Guidelines, provides more detail and guidance for state surveyors. After surveying each facility, state surveyors determine whether the facility has met or not met each standard. If a facility is judged to not meet a standard, it is given a “deficiency.” Generally deficiency determinations are made by survey teams and reviewed by state supervisors. Facilities have the option to challenge the factual basis of deficiencies in an informal dispute resolution and to appeal decisions through an administrative review process. State survey results showed a clear trend in declining numbers of deficiencies after the enforcement regulations were implemented in 1995, with a small increase in 1998. As seen in Figure 5.1, the average number of deficiencies reported per facility declined from 10.8 per facility in 1991 to 4.9 per facility in 1997, a 44 percent decrease (Harrington and Carrillo, 1999). In 1998, however, the average number of deficiencies per facility increased slightly to 5.2. At the same time, the percentage of facilities reported to have no deficiencies increased from 10.8 in 1991 to 21.6 in 1997, and then dropped to 18.9 percent in 1998 (Harrington and Carrillo, 1999; Harrington et al., 2000b). Survey results also show substantial variation across states (see Table 5.1). In 1998, the average number of deficiencies ranged from 1.9 per facility in New Jersey to 14.2 in Nevada (more than a sevenfold difference) (Harrington et al., 2000b). Similarly, the percentage of facilities with no deficiencies varied from none in Washington, D.C., to 47.7 percent in New Jersey. For the most part, the higher the average number of deficiencies in a state, the lower is the percentage of facilities reported to have no deficiencies cited (Harrington et al., 2000b). Weaknesses in the Current Survey Process Although the declining number of deficiencies and increase in the number of deficiency-free facilities may indicate substantially improved care in nursing homes, the analysis presented in Chapter 3 suggests that taking too optimistic a stance may be unwarranted. Instead, it may suggest weaknesses in the nursing home survey process —specifically, its ability to reliably detect quality problems. The inability or unwillingness

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Improving the Quality of Long-Term Care FIGURE 5.1 Average number of deficiencies and percent of facilities without deficiencies: United States, 1991–1998. SOURCE: Harrington et al., 1999, 2000b. of surveyors to detect quality problems may be one explanation, particularly following implementation of more vigorous enforcement regulations in 1995 (Johnson and Kramer, 1998; Mortimore et al., 1998; Schmitz et al., 1998). Several studies support the conclusion that the current survey process fails to identify important quality-of-care problems. A study conducted by the University of Wisconsin in 1996, which involved 6 concurrent surveys and 23 survey observations performed by independent investigators, showed that state surveyors consistently cited fewer deficiencies in care and rated problems as less severe than did the researchers (Abt and CHSRA, 1996). Similarly, two concurrent surveys conducted for the General Accounting Office (GAO) in California also found that surveyors did not detect some serious quality-of-care problems related to hospitalizations, deaths, falls accompanied by fractures, restraint use, failure to dress and groom residents, malnutrition, infections, and pressure sores (GAO, 1998a; Johnson and Kramer, 1998). Forty concurrent surveys in ten states revealed that state surveyors were inconsistent in detecting problems related to outcomes of care, particularly those related to maintaining resident function, pressure sore prevention, and nutritional support (Johnson and Kramer, 1998). At the same time, state surveyors also cited some

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Improving the Quality of Long-Term Care tial long-term care has been made by the Assisted Living Quality Coalition (ALQC, 1998). The coalition has engaged in consensus building among representatives of consumers, providers, regulators, purchasers, and financiers of long-term care. Recently it set forth a framework for quality in assisted living that included a key role for basic regulatory standards as well as an emphasis on innovation, collaboration, and quality improvement structures (ALQC, 1998). The group agreed on the need for minimum standards related to care processes associated with desired resident outcomes and proposed that such standards should: define the service being offered and the practice processes and structural capacities necessary to operate; establish minimally acceptable practice guidelines; and provide the basis for corrective action when problems arise. Although the coalition as a group did not endorse a set of basic standards, it reached a degree of consensus, except for disagreement in two significant areas: a requirement for private rooms and consumer options for pursuing judicial enforcement of perceived noncompliance with standards. Despite these two areas of disagreement, the coalition report included an appendix of guidelines for states developing standards (ALQC, 1998, p. 30). HOME HEALTH AGENCIES Standards for Home Health Care Agencies Each area of long-term care presents different surveying and monitoring challenges. For home health agencies, a particular challenge arises from the lack of a facility setting in which staff and patients or residents are congregated and, thereby, more easily observed or interviewed. Services are dispersed across millions of “settings of care” (personal homes and congregate residences). Monitoring quality in home health care is complicated by the number of agencies involved, the growth of agency branch offices (nearly 5,000 in 1997 compared to just under 1,250 in 1993 [GAO, 1997b]), the reliance of agencies on contract and part-time personnel, the difficulty of making site visits to patient homes, and reductions in funding for state survey and certification activities. As GAO (1997b, 1998b) pointed out, by 1996 the program was growing so fast that HCFA was attempting to certify about 100 new home health agencies per month. This growth in agencies actually reversed when HCFA placed a moratorium from September 1997 to January 1998 on the admission of new agencies into the Medicare program until new

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Improving the Quality of Long-Term Care requirements could be implemented. More importantly, new Medicare payment rules have made the home health sector less financially attractive. According to HCFA, the number of agencies has dropped by about 1,000 since October 1997 (DeParle, 1999). The federal government sets the requirements for home health agencies to participate in the Medicare and Medicaid programs, and most states use these requirements as the basis for regulating agencies for their state Medicaid programs. States administer certification and licensure programs that include inspections with sanctions such as fines, suspension of payments for care, and decertification from participation in Medicare and Medicaid. Officials also may respond to resident and other complaints about substandard care. The federal government's concern about home health care has often been less focused on quality per se than on the escalating use and cost to Medicare of home health services. The expansion of the Medicare home health benefit as a result of judicial decisions (especially Dugan v. Bowen, 1989) contributed to an explosion in Medicare home health use and costs. The government has taken steps to rein in costs by tightening eligibility determinations, intensifying investigations of fraud and abuse, and revamping the system of paying for home health services. The payment changes are reviewed in Chapter 8. As defined by OBRA 87, Medicare requirements of participation for home health agencies cover structure and process of care, administration, and required service capacities including home health aide services and physical therapy. Currently, standards are composed of 12 component areas including patient rights, acceptance of patients, plans of care, skilled nursing services, and clinical records. Most requirements are further subdivided into specific standards. For skilled nursing services provided by home health agencies, the 15 standards are divided into those that cover registered nurses and those that cover licensed practical nurses. The survey guidelines for home health agencies require an initial or standard survey to assess whether the home health agency has the capacity to deliver services that meet minimum standards. Once an agency passes its initial survey, it should be recertified every 12 to 26 months following the same survey process, with the frequency varying depending on the results of prior surveys. Complaints can also trigger surveys. Medicare standards of participation for home health agencies do not require that an agency provide all or even most of its services directly, and an agency can contract with noncertified agencies to provide services, including skilled nursing care. GAO has suggested that “excessive contracting may be an indication that [an agency] is exceeding its capacity to effectively care for its patients” (GAO, 1997b, p. 7). Until recently, agencies could be certified before they had actually

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Improving the Quality of Long-Term Care provided care to a sufficient number of patients to establish some kind of performance record. In 1998, HCFA required, as proposed by GAO, that agencies must have provided “quality” care to at least ten patients before being allowed to provide care to Medicare patients, and at least seven patients must be receiving active care at the time an agency seeks certification (HCFA, 1999b). Most states have additional requirements for licensure beyond Medicare–Medicaid certification, but at least ten states have no independent provisions for licensing home care agencies (Harrington et al., 2000e). Improvements in Home Health Agency Standards In 1997, HCFA proposed the first broad revisions in the home health agency requirements for participation since OBRA 87. One objective was to make requirements more “patient centered” and “outcomes oriented.” Another objective was to encourage agencies to undertake internal quality improvement. Structure and process requirements were to be clearly related to achieving good, and avoiding bad, patient outcomes. HCFA now requires the use of a uniform assessment instrument (the Outcome and Assessment Information Set [OASIS]) for Medicare home health beneficiaries for agencies to participate in Medicare. Rules for home health agency use of this instrument were issued in January 1999 and have since been revised, in part to respond to increasing industry consolidation and concerns about consumer privacy. The assessment instruments should be accompanied by specific guidelines for care planning and service provision. The committee supports HCFA's efforts to make home health regulations focus on the processes and outcomes of care. It also supports research on care processes and outcomes and the development of practice guidelines to guide and improve home health care. Deemed Status In addition to certification based on state surveys, federal law provides that home health agencies may meet Medicare participation requirements by receiving accreditation from either of two private organizations, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) or the Community Health Accreditation Program of the National League for Nursing. To qualify an accrediting organization for deemed status, HCFA has to compare the organization's standards and survey processes with those specified for Medicare; assess the organization's survey process, personnel, and resources; evaluate the process for monitoring agencies found out of compliance; and assess the adequacy for oversight and validation purposes of the organization's data

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Improving the Quality of Long-Term Care reporting capacities. Recent analysis is not available on whether the deemed status approach is effective in ensuring quality care. Weaknesses in Regulation of Home Health Agencies Licensing and regulation of home health providers—other than Medicare- or Medicaid-certified providers—is uneven across states. For example, some states rely on federal home health care standards, whereas others have adopted additional state regulations for agencies not seeking federal certification. One result is that gaps exist in information about the number and kinds of entities that are providing home-based health care. Even less information is available about the adequacy and appropriateness of the services provided. GAO has been critical of HCFA's oversight of the Medicare home health benefit, particularly for lax fiscal oversight (e.g., see GAO, 1995, 1996a, 1997b, and 1998c). Some criticism has focused on problems in the survey and enforcement process that may affect the quality of patient care. One strong criticism was that the threat of termination from Medicare had little if any deterrent effect and that problem agencies continue to operate with impunity (GAO, 1997b). Similarly, when enforcement actions are not taken, it can encourage more disregard for public regulatory standards (Edelman, 1998a). A GAO report (1997b) has criticized the initial certification process and the recertification process, both of which are meant to assess home health agency capacity to provide quality health services. The report stated that the certification process for home health agencies is easy—“probably too easy” (GAO, 1997b, p. 2). Initial surveys cover only 5 or 12 Medicare requirements for participation, which means surveyors cannot determine whether all standards are being met. Moreover, surveyors did not always conduct home visits to patients and therefore had no way of assessing whether care was being properly delivered. In addition, the number of patients that surveyors are required to survey is too small to adequately determine whether the agency is meeting standards. GAO (1997b) also found that some agencies had never delivered services for which they sought certification under current HCFA procedures. Moreover, in numerous instances, home health agencies were certified without meeting minimum standards. In addition, GAO (1997b) found that agencies can continue as Medicare providers even if they have multiple deficiencies as long as they have an approved plan of correction. The same yo-yo pattern described earlier for nursing homes also characterizes home health agencies. Under current HCFA procedures, once a home health agency is found to be jeopardizing patient health and safety and the violations are consid-

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Improving the Quality of Long-Term Care ered to be immediate and serious, the agency can be placed on an accelerated timetable for termination. However the agency is allowed to take corrective action or to establish a plan for correction, so that those with many substandard conditions can continue in the program. During the period 1994–1996, terminations initiated by HCFA affected only about 0.1 to 0.3 percent of the total number of agencies (GAO, 1997b). As with most programs dependent on public funds, a problem with the survey process for home health regulations relates to budget constraints. Some states have reportedly not been conducting resurveys of home health agencies because of lack of funds and are only conducting surveys for new certification. Directions for Regulation of Home Health Agencies Several of the committee's suggestions for improvements in nursing home survey and enforcement activities also apply generally to home health regulation and are generally consistent with GAO recommendations for home health care. In particular, as with nursing homes, federal and state survey efforts should focus more on chronically poor-performing providers by surveying them more frequently, increasing penalties for repeated violations of standards, and decertifying persistently substandard providers. Federal and state survey efforts should focus more on high-risk events such as rapid caseload growth and management changes. In addition, HCFA should make information about poor-performing providers more easily available to consumers, consumer advocates, state policy makers, and others. The committee recognizes that adequate levels of funding are needed for HCFA to be able to improve state survey and certification processes for home health care providers in an effective and efficient manner. HOME CARE AND RELATED SERVICES Home care services, including personal care services or personal care attendants are the responsibility of state agencies, even though many of these services are paid for by the Medicaid program. States have flexibility in designing these types of programs under Medicaid and may offer such services through home health care agencies or home care agencies, independent providers, or some combination of these. In a recent study, the majority of states allowed self-direction of personal care using independent providers, while the remainder used agency providers (LeBlanc et al., 2000a). States vary in the monitoring of home care services. Where services are offered through home health agencies, federal and state licensing and certification rules apply. In a study by Harrington and colleagues (2000e),

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Improving the Quality of Long-Term Care there were 14,045 licensed home health care agencies and 801 other licensed home (or personal) care agencies in the United States in 1998. Where services are offered through home care agencies, state licensing standards apply rather than federal certification rules. Only 59 percent of the total licensed agencies were certified for Medicare and Medicaid, meaning that 41 percent of the agencies followed state licensing laws only (Harrington et al., 2000e). Ten states, however, used only federal home health certification rules and did not have their own licensing requirements in 1998. A review of state licensing regulations found that they offered greater flexibility and were less stringent than federal rules. The one exception was that some states were more stringent than the certification rules in criminal background checks for staff. Thirteen states required criminal background checks for home health agencies and nine states required them for home care or personal care attendants (Harrington et al., 2000e). LeBlanc and colleagues (2000a) found that care management was the primary means of monitoring personal care services in the states. Formal training of direct care providers was not a common requirement. Most states did mandate some type of supervision of personal care attendants. Some states also conducted client satisfaction surveys by telephone or mail, but most of these were not regularly administered. The extent of actual state monitoring of quality in home care services for both agencies and independent providers is unknown. Nor is it known how effective the states are in ensuring quality in home care services. This is clearly an area that needs more research attention. THE ROLE OF ADVOCACY The roles of consumers, their families, and communities are essential in the design, implementation, and evaluation of long-term care. Historically, advocacy by consumers, family members, and committed community members has played a critical role in shaping long-term care policy and services (Shapiro, 1993). Consumer activists spearheaded the passage of key legislation, such as the Nursing Home Reform Act (OBRA 87), the Americans with Disabilities Act, and the Rehabilitation Act. They likewise spurred the development of federal requirements for state rehabilitation agencies to establish consumer advisory boards and the Medicaid program to grant waivers allowing states to fund community-based services and personal assistance services (Covert et al., 1994; Powers, 1996; Ragged Edge, 1997). Currently, hundreds of local, state, and national advocacy and self-advocacy organizations are active in monitoring and shaping the direction of long-term care for older and younger adults (Estes and Swan, 1993; Shapiro, 1993; Dybwad and Bersani, 1996). Groups advo-

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Improving the Quality of Long-Term Care cating on behalf of children and their families frequently serve as advisers to state and local service providers. For example, most children's hospitals have family advisory boards that contribute to decisions ranging from facility design to assessing consumers ' views of their care experience. Depending on its purposes, resources, and circumstances, an advocacy program may work at the individual, organizational, or system (local, state, national) level, or some combination of these. The range of functions includes: assisting people with long-term care needs to work toward self-advocacy; assisting with individual complaints and mediating conflicts; working on behalf of a group of long-term care recipients; working with health care providers on resident or consumer protection and quality improvement; monitoring the application of regulations; educating individuals and communities about quality-of-care factors and consumer protections; mobilizing community efforts to reform ineffective or harmful programs and policies; and participating in local, state, and national advocacy efforts. The advocacy models include the publicly funded Long-Term Care Ombudsman Program; resident representatives and councils in nursing homes, assisted living facilities, and other residential settings; family councils for both congregate residential and other settings; and independent state and national advocacy organizations. Long-Term Care Ombudsman Program Probably the best-known advocacy effort in long-term care is the Long-Term Care Ombudsman Program, which was mandated under the Older Americans Act in 1978. The program addresses concerns related to individual residents and broader system-level issues. Program staff investigate and resolve complaints made on behalf of residents living in long-term care facilities. They also help educate the public and facility staff on complaint filing, new laws governing facilities, and best practices used in improving quality of care and evaluating long-term care options. In addition to advocacy on behalf of residents, ombudsmen are typically involved in analyzing, monitoring, and recommending changes in the design and implementation of laws affecting residents. Ombudsman programs also support the activities of resident and family councils as well as citizen organizations. The program receives financial support from the

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Improving the Quality of Long-Term Care federal government and many state and local jurisdictions. In 1998, it was responsible for consumers using 2,624,248 long-term care beds with total funding of almost $47,405,000 (AOA, 1998). Many long-term care ombudsmen and other long-term care professionals argue that routine on-site presence of ombudsmen builds awareness of the program, establishes resident confidence, allows resident problems to be detected before they become serious, and promotes positive working relationships with facility administration and staff (IOM, 1995, p. 62). The regular presence of persons from outside the facilities has been identified as an important factor in improving quality of care and quality of life in facilities (IOM, 1986; Barney, 1987; Feder et al., 1988; Glass, 1988; Cherry, 1991, 1993; Nelson, 1993). The services provided by ombudsman programs are also relevant to the growing number of consumers of community-based long-term care services, including those directing their own services. These consumers now have no consistent access to external assistance in resolving their complaints and care problems. These programs are critically important, and will become even more so as the use of long-term care increases and relatively fewer resources are available for quality assurance. Resident Councils The Nursing Home Reform Act of 1987 provided for the right of residents and family members to organize resident councils in nursing facilities. Ideally these councils are organized, self-governing, decisionmaking groups of long-term care residents who meet regularly to voice their needs and concerns and to have input into the activities, policies, and issues affecting their lives in the facility. Through a resident council, residents can positively affect their facility, making it a reflection of their preferences and values (Clark and Brown, 1998). In recent years, family councils have taken a more active role in improving conditions in nursing homes because of the residents' impairments. Independent Advocacy Organizations Since the late 1960s, citizen groups have organized in many communities to improve conditions in nursing facilities. Similar groups have been organized at the state and national levels with a focus on public education and advocacy. These groups provide an important complement to consumer advisory teams, community councils, ombudsman programs, and quality improvement groups that function to promote the development of quality services within long-term care settings. They are typically directed and staffed by consumer activists and perform a variety

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Improving the Quality of Long-Term Care of functions, including consumer education and support; monitoring and reporting facility and program adherence to regulations and quality standards; advocacy for care reform and policy development; and support of local advisory and governance groups within long-term care settings. The range of advocacy groups reflects the diversity of long-term care users and their families. Some groups focus on specific populations, such as those with mental retardation, whereas others focus on particular service settings. For example, the National Citizen's Coalition for Nursing Home Reform (NCCNHR) and Consumers United for Assisted Living (CUAL) have been advocates for reform in these long-term care settings. American Disabled for Attendant Programs Today (ADAPT) has been active in the expansion of personal assistance services to people with disabilities. Various national groups, including Family Voices, Federation for Children with Special Needs, National Parent Network on Disabilities, and Pilot Parents have advocated in most states for improved services for children and assistance to families caring for children with chronic health problems at home. In addition, community-level groups teach advocacy skills, link families to necessary services, and help them navigate the health care system. Despite their strengths, citizen groups are often limited by their reliance on volunteers and charitable contributions and their lack of guaranteed access to nursing homes and residential care settings. Fear of retaliation against residents often keeps families and other interested parties from protesting poor conditions and otherwise acting to improve quality of care (Monk et al., 1984; IOM, 1995). Independent advocacy organizations have a unique and critical role as an independent voice for the consumers of long-term care. They are also essential partners of providers, state regulators, financiers, and third-party payers in monitoring and advancing the quality of services. Advocacy organizations are increasingly being integrated into comprehensive long-term care quality initiatives (ALQC, 1998). Recommendation 5.4: The committee recommends that the federal and state governments encourage the development of effective consumer advocacy and protection programs by providing funding and support for the following types of activities: consumer education and information dissemination initiatives; and complaint resolution programs and processes targeted at consumers of community-based long-term care.

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Improving the Quality of Long-Term Care ACCREDITATION Accrediting bodies are independent, not-for-profit, nongovernmental entities that are governed by boards composed of health care professionals, consumers, representatives of provider organizations, and purchasers. Through an evidence-based and consensus-building process, accrediting bodies set standards for quality and safety in health care provider organizations and make the standards publicly available. The accrediting bodies then evaluate provider organizations that volunteer to be assessed against these standards. Successful compliance with the standards leads to “accreditation” of the provider organization, and the accrediting organization's decision, as well as a summary of the findings that led to that accrediting, are made public. In the long-term care arena, accreditation programs currently exist for some nursing homes, home health care, adult day care, hospice, assisted living, and long-term care pharmacies. Accreditation standards are usually intended to “raise the bar” by promoting and recognizing performance beyond basic, legally established levels, including through programs of continuous quality improvement. In some cases a government agency can grant an accrediting body “deemed status” for a specific accreditation program—that is, a provider organization accredited by that body is deemed to be in compliance with the quality-related regulations for the organization's participation in the Medicare or Medicaid program, or with state regulations for licensure. Under these circumstances, the provider organization does not have to undergo a separate government survey; instead, the government agency relies on the accrediting body's evaluation to make its Medicare or Medicaid certification or licensure decision, as described above for home health agencies. The 1986 IOM report on nursing home quality discussed accreditation and deemed status at length and rejected it for nursing homes. At the request of Congress, HCFA (1998b) evaluated whether private accreditation of nursing homes would be preferable to the current system of public accreditation. HCFA secured an independent evaluation by ABT Associates. HCFA concluded that the private survey process done by JCAHO was not effective in protecting the health and safety of nursing home residents. According to HCFA, granting “deeming” authority to JCAHO may place nursing home residents at serious risk. As one example, in more than half of the 179 cases where both JCAHO and HCFA conducted inspections of the same nursing homes, JCAHO failed to detect serious problems identified by HCFA (HCFA, 1998b). Nevertheless, accreditation can play a role in encouraging providers to go beyond the basic governmental regulations and strive towards higher standards.

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Improving the Quality of Long-Term Care CONCLUSION Governments have a central role in defining and enforcing basic standards of quality for long-term care. Professional, trade, consumer, and other organizations generally make a different contribution by going beyond minimum performance levels to set requirements that encourage excellent care. Although OBRA 87 has achieved advances in the quality of care and life in some areas, the implementation of its survey and enforcement efforts has been less than satisfactory, as HCFA, the agency with primary responsibility for its implementation, has recognized. Although HCFA has moved to strengthen its oversight of state survey and enforcement activities and to improve their effectiveness and efficiency, these activities need to be sustained and revised in collaboration with state officials, providers, and consumers. This report was not intended as a full review of the implementation of OBRA 87; this chapter has focused selectively on problem areas in regulatory standards and made recommendations that would improve the reliability and validity of federal and state enforcement efforts primarily affecting quality of care. Little information is available about federal or state performance in monitoring the quality of long-term care provided under Medicaid 's home and community-based services waiver program. To guide decisions, policy makers need more information about how this program is working and, more generally, about how states are defining and regulating community-based long-term care services and supportive housing for different populations. The committee is concerned about reports of quality problems in community-based residential care. At the same time it believes that because of the complexity of the various settings, the inadequate information about quality, and the fragmentation of the various state regulations, the creation of a detailed federal regulatory system at this time is unlikely to bring about better quality of care and quality of life for users of these services. The committee believes that people using long-term care should, within certain broad limits, be able to make choices among alternatives that offer varying balances of autonomy, safety, and other values that sometimes conflict.