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State Compliance in Carrying Out Long-Term Care Ombudsman Programs

INTRODUCTION

This chapter focuses on state compliance in implementing the long-term care (LTC) ombudsman programs of the Older Americans Act (OAA). The committee discusses two areas specifically noted by Congress in the 1992 amendments to the act—the availability of services and the unmet need for services. The extent of state compliance is assessed in the context of two vital functions of the ombudsman program: (1) direct services to residents and (2) systemic advocacy. Next, the committee examines the factors that enhance or impede compliance with the program’s mandates and standards and proposes recommendations to address barriers to compliance. Two important related aspects of compliance are discussed in later chapters: conflicts of interest and adequacy of resources. The OAA sets forth several requirements for the LTC ombudsman programs regarding conflicts of interest. The committee discusses the extent of compliance with these mandates and offers a more comprehensive examination of conflicts of interest in Chapter 4. The resources available to operate an ombudsman program can either enhance or impede the program’s ability to comply with mandated responsibilities; the committee discusses adequacy of resources in Chapter 6.

COMPLIANCE WITH MANDATED FEDERAL PROVISIONS

The committee distinguishes conceptually between a compliance review and an effectiveness assessment. The committee turned its attention to these two separate but interconnected dimensions of performance of the LTC ombudsman programs. Compliance is an accountability concept, and a review



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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 3 State Compliance in Carrying Out Long-Term Care Ombudsman Programs INTRODUCTION This chapter focuses on state compliance in implementing the long-term care (LTC) ombudsman programs of the Older Americans Act (OAA). The committee discusses two areas specifically noted by Congress in the 1992 amendments to the act—the availability of services and the unmet need for services. The extent of state compliance is assessed in the context of two vital functions of the ombudsman program: (1) direct services to residents and (2) systemic advocacy. Next, the committee examines the factors that enhance or impede compliance with the program’s mandates and standards and proposes recommendations to address barriers to compliance. Two important related aspects of compliance are discussed in later chapters: conflicts of interest and adequacy of resources. The OAA sets forth several requirements for the LTC ombudsman programs regarding conflicts of interest. The committee discusses the extent of compliance with these mandates and offers a more comprehensive examination of conflicts of interest in Chapter 4. The resources available to operate an ombudsman program can either enhance or impede the program’s ability to comply with mandated responsibilities; the committee discusses adequacy of resources in Chapter 6. COMPLIANCE WITH MANDATED FEDERAL PROVISIONS The committee distinguishes conceptually between a compliance review and an effectiveness assessment. The committee turned its attention to these two separate but interconnected dimensions of performance of the LTC ombudsman programs. Compliance is an accountability concept, and a review

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act of compliance focuses on whether what should have been done was done. In this context, the committee seeks to answer the question: Have states implemented statewide LTC ombudsman programs? The committee explores whether the ombudsman programs are achieving what they are intended to achieve in Chapter 5. The committee decided that an analysis of whether states have implemented LTC ombudsman programs to an acceptable level of operation would provide the most meaningful information about compliance. From an operational perspective, fully implemented ombudsman programs (a) make their services available to residents and (b) ensure that residents know how and are able to gain access to the ombudsman. Furthermore, the ombudsman works with or on behalf of residents to address the residents’ concerns through resolution of individual resident complaints. The ombudsman also advocates for systemic changes. Thus, in its discussion on compliance, the committee also felt it was appropriate to address the aspects of its charge pertinent to availability, accessibility, and unmet need. EXTENT OF COMPLIANCE A state-operated LTC ombudsman program fully in compliance with congressional mandates will fulfill several functions.1 For purposes of reviewing the extent of compliance, the committee collapsed the several statutory functions of the LTC ombudsman program into two primary services: (1) direct, individual advocacy services to residents of nursing facilities and board and care (B&C) facilities; and (2) systemic advocacy services. Direct Individual Advocacy Services The OAA requires ombudsmen to ensure that residents have regular and timely access to the services provided by the ombudsman and that they receive timely responses to complaints. Presumably, the services provided should be able to meet the needs of the residents. States receive no guidance from either 1   The mandated functions of the ombudsman program are enumerated in Title VII, Chapter 2, of the Older Americans Act (see Appendix B). Such functions include, but are not limited to, resolving complaints; empowering residents; educating residents about how to obtain services; providing administrative and technical assistance to designated local programs; monitoring and commenting on laws, regulations, and policies; and promoting the development of citizen organizations and resident and family councils.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Congress or the Administration on Aging (AoA) on how to interpret these requirements. For example, is a state in compliance for ensuring regular access if it visits all its facilities on a weekly basis? Is it in compliance if it maintains a statewide hotline and visits facilities only when a complaint is lodged? Is the program in compliance if it serves a large Spanish-speaking population, but all paid and volunteer ombudsmen speak only English? Regular and Timely Access (Accessibility) According to the findings of a General Accounting Office (GAO) study (1992b), regular facility visitation by an ombudsman can affect a program’s impact in four ways: (1) by increasing access to the ombudsman by residents; (2) by increasing access to the ombudsman by residents at higher risk of experiencing poor care or poor quality of life; (3) by increasing knowledge about the universe of problems within a given facility among ombudsmen; and (4) by increasing awareness and knowledge of resident-care issues among facility personnel. In order for a resident to gain access to ombudsman services, the resident or someone who acts on his or her behalf must be aware of the ombudsman’s services. Most programs operate statewide hotlines and use posters, informational brochures, and public service announcements to inform the public of their existence and describe the scope of their services. However, given the characteristics of the target population and the high turnover rate among residents and facility staff, are these indirect activities sufficient to create a program that is “available” and “accessible” to the residents of LTC facilities? Historically, frequent, routine, visitation to residents brought public awareness and constituted a critical aspect in the design of the ombudsman program. As noted in Chapter 2, however, the frequency of visits per facility varies significantly within and across states. Half of the state ombudsman programs continue to encounter problems gaining access to LTC facilities (AoA/OIG, 1993). Two-thirds of state ombudsmen (66 percent) indicated in the Chaitovitz (1994b) canvass that the primary reason that the need for ombudsman services of residents of nursing facilities is not met is that facilities are not visited frequently enough to assure that residents are aware of the program. An even higher percentage of state ombudsmen (74 percent) expressed concern about low visitation rates to B&C facilities (Chaitovitz, 1994b). Many local ombudsmen who sent information to the committee indicated their concern about whether they visit facilities frequently enough to assure that residents were aware of their services. Phillips and colleagues (1994) reported

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act similar findings. Other information sources suggest that the role ombudsmen play in B&C is actually fairly limited. In an AARP survey (Hawes et al., 1993), two-thirds of the ombudsmen interviewed in 50 states and the District of Columbia reported that they did not make regular visits to licensed B&C homes. Additionally, although ombudsmen do not necessarily go to facilities to visit with staff, awareness of the program among facility staff can lead to greater resident awareness. Lusky and colleagues (1994) found that in many cases professional staff at nursing facilities were unsure about the most basic aspects of the ombudsman program’s organization and operation. The investigators attributed staffs confusion about the program, in part, to limited presence of the ombudsman. Timely Responses (Availability) How an ombudsman program defines, investigates, and resolves complaints are complex features of an ombudsman program, in part because of the lack of standardized definitions across all ombudsman programs. These features are not easily evaluated by such simple measures as whether the program responds to complaints, who the complainant is, or the percentage of complaints investigated by other agencies. Nevertheless, basic complaint-specific data are currently the primary measure of activity of the ombudsman programs. In general, all ombudsman programs report that complaints from residents in nursing facilities are responded to in some fashion (OIG, 1991a,b,c; AoA/OIG, 1993; AoA, 1994c; Chaitovitz, 1994b; Kautz, 1994). Ombudsman programs give priority to complaints that are potentially life-threatening. In a study conducted by OIG (1991b), 44 states indicated that they respond to such complaints in less than 48 hours; the other 7 states participating in the study indicated that they respond within a week. Complaint response time for non-life-threatening complaints ranged from 24 hours to several months; 94 percent reported that they respond in a week or less. In Chaitovitz’s (1994b) canvass of state ombudsmen, only 18 percent expressed concern about the timeliness of responses. The type and mode of responses to complaints are determined chiefly by the type of complaint and the availability of an ombudsman; for example, ombudsmen may provide information on residents’ rights to privacy over the telephone and follow up with a mailed brochure. Information available to the committee from state and local ombudsmen suggests that in some locales many complaints are responded to, investigated, and resolved completely by telephone. Other complaints are referred to other agencies inappropriately and prematurely because of lack of adequate resources. Such responses may reflect

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act too few paid staff and volunteers or the lack of funds for travel to investigate on site. Surveys of ombudsman about their activities in B&C homes indicate that they receive and handle relatively few complaints from residents of these facilities (Phillips et al., 1994). Some ombudsmen conclude that a low volume of complaints in B&C facilities indicates few problems in quality of life and quality of care. Others consider low volume of complaint as a sign that B&C residents do not have access to and are unaware of the ombudsman program. Similar lack of consensus exists regarding the interpretation of volume of complaint in nursing facilities (GAO, 1992b; Netting et al., 1992; Huber et al., 1993). According to Phillips and colleagues (1994), the results of their survey of staff and residents of B&C homes suggest that the low volume of complaints and requests for assistance could also be explained by at least two other factors: reluctance to use the ombudsman program and lack of awareness on the part of staff and residents alike about the help the ombudsman program can offer. Unmet Need Absent data gathered through some systematic process that measures the total population with needs (met and unmet) for ombudsman services, unmet need may be very difficult, if not impossible, to quantify.2 Thus, the committee was not able to measure the incidence and prevalence of unmet need for ombudsmen services. The definition of unmet need becomes one of perception and individual judgment in the absence of nationally adopted definitions or guidelines. Certain questions arose often in the committee’s deliberations, such as: “Are needs ‘unmet’ if the ombudsman is unable to resolve the complaint to the satisfaction of the resident?” and “What concern should the LTC ombudsman programs have for the unmet need of residents who are younger than age 60?” Variation in ombudsman programs (due in part to enabling legislation, human resources, level of communication and negotiating skills unique to each ombudsman, and amount of training provided) influences how well the 2   This discussion of unmet need does not elaborate on the need for ombudsman services of elderly residents who live in nursing home and B&C facilities that have no or very limited contact with the ombudsman programs. The prior discussion on accessibility addressed what could be termed the “unmet” need of that group of residents. The committee discusses the need for and feasibility of expansion of the LTC ombudsman program to elderly persons not residing in LTC facilities in Chapter 7.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act ombudsman is able to work with the resident and other entities to meet the resident’s needs. An unmet need in one facility or local ombudsman program (e.g., residents unable to talk with the ombudsman because of language barriers) may not be defined or perceived as such in another facility or ombudsman program (where, for example, several multilingual volunteers may be designated ombudsmen). Unmet Need Among Residents Presently Eligible for Ombudsman Services. According to information provided by ombudsmen to the committee, residents with unmet needs generally can be grouped into three categories: Residents who have certain characteristics (e.g., they are cognitively impaired, they reside in rural areas or in states with no statutes that grant residents’ rights, they are viewed as “difficult behavior” residents by the facility staff and, thus, they are at risk of frequent transfers among facilities, or they have cultural and language barriers); Residents with particular types of complaints or problems (e.g., fiduciary abuses, problems related to public benefit and entitlement programs, family quarrels, physical and verbal abuses, and criminal behaviors on the part of family members); and Residents whose complaints require help from other agencies (e.g., a few licensed B&C homes make desired placement changes difficult; resolution requires intervention by a regulatory agency that has a backlog of complaints to investigate; a competent, honest guardian is needed). Each of these three categories of unmet need shares at least one common element: namely, an important prerequisite to meeting the need is effective coordination between ombudsman programs and other resources. For example, responding to the needs of cognitively impaired persons could be enhanced in some cases through joint efforts with protection and advocacy systems (P&As). Indeed, the OAA specifically mandates such coordination, although the committee is aware of only a few examples of formal, substantive coordination. Likewise, responding to particular types of complaints, especially those involving public benefits programs and certain types of fiduciary abuse, may require that the ombudsman refer to and coordinate with legal assistance providers. Again, the OAA calls for such coordination. Although it is not uncommon for ombudsmen to refer residents’ cases to legal assistance programs, the committee was unable to find any consistency or assurances of adequate coordination. Finally, the third category captures precisely all the problems that cross the jurisdictional bounds of multiple agencies. Coordination is essential to any solution to these matters. The committee acknowledges the importance of good and frequent training of ombudsmen (including paid staff and volunteers who are designated

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act representatives) to decreasing the incidence and prevalence of unmet need. Training not only increases the skills of problem resolution but also can provide technical information for problem solving. Unmet Need Among Residents Not Typically Served by the OAA Program. Two particular areas of unmet need deserve further comment: residents of LTC facilities who are 60 years of age or younger, and veterans residing in LTC facilities. Generally, OAA appropriations can be used only to serve individuals who are 60 years of age or older. Expansion of the LTC ombudsman program to serve younger residents in nursing facilities or B&C homes would appear to violate the act, although OAA monies have been used to serve nonelderly individuals in the past (e.g., nutrition and caregiver support programs have served younger spouses). Residents of nursing facilities and B&C homes who are under age 60 typically experience impairments similar to those of older residents, and they are trying to manage the same complexities of institutional life. Theoretically, state P&As serve younger residents of LTC facilities and in particular target their services to residents in facilities that exclusively or primarily house individuals with developmental disabilities and mental illnesses. Their level of involvement in nursing facilities and their coordination with LTC ombudsmen appear variable. According to information gathered during the committee’s site visits, many state and local ombudsman programs have already decided to serve younger residents in LTC facilities in which primarily elderly residents reside by using private, funds, instead of OAA monies, to support these efforts. They reason, for instance, that if one resident in a facility—regardless of age—has a problem, other residents might have similar problems. Also, LTC ombudsmen can typically resolve younger residents’ problems with the same strategies and skills that they use to help older residents. Inclusion of these vulnerable, younger residents in the LTC ombudsman program makes sense as it provides a valuable service to those residents, draws on the considerable expertise LTC ombudsmen have developed in working in such settings, and may identify issues that could lead to preventive actions of benefit to the traditional constituency of the ombudsman. Ombudsmen services are not generally available to veterans residing in nursing and B&C homes (called domiciliary homes by the veteran community) operated by the Department of Veterans Affairs (VA). The VA maintains a Patient Representative (PR) Program in all VA medical centers. The PR serves as a liaison between the patient and the facility. The program is patterned after recommendations of the American Hospital Association and standards promulgated by the Joint Commission on Accreditation of Healthcare

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Organizations. It is primarily hospital focused. The PRs represent the management of the facility, and, as employees of the VA medical centers, the PRs are inherently subject to conflicts of interest (Custis, 1994). In many states, facility administrators within the VA facility-managed network deny LTC ombudsmen access to veterans and claim that the PR program meets their advocacy needs. Additionally, ombudsmen encounter access problems at VA facilities, because the OAA does not specifically authorize access to federal or state-owned facilities. Some state enabling legislation also fails to grant access to state-owned facilities. To help meet the needs for ombudsman services of these two groups, the committee offers the following recommendations: 3.1. The committee recommends that Congress amend the Older Americans Act to allow state ombudsman programs to serve younger individuals who reside in long-term care facilities in which primarily elderly individuals reside. However, state ombudsman programs should strive to comply fully with their current mandates before using Older Americans Act resources to serve residents who are younger than 60 years of age. When applicable, the state long-term care ombudsman should coordinate activities and advocacy efforts with other organizations that serve as advocates for nonelderly residents. 3.2. The committee recommends that the Department of Veterans Affairs (VA) institute an agreement with the Administration on Aging (AoA) to ensure that long-term care ombudsman services are available to all veterans residing in nursing and domiciliary homes operated by the VA. The agreement should include the transfer of adequate funds from the VA to the AoA to support the provision of ombudsman services to VA-owned or VA-managed facilities. Systemic Advocacy Numerous questions arise in assessing whether state LTC ombudsman programs comply generally with the mandates that focus on systemic advocacy work. For example: Does the program consistently comment on proposed changes in state or federal laws, regulations, or policies? Does it directly seek changes, clarifications, or improvements in state or federal laws, regulations, or policies?

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Does it file complaints with responsible agencies about the operations of state or federal programs that have an impact on the quality of care and quality of life of residents of LTC facilities? Does the program assist residents, their families, other agencies, or the public in securing changes in state or federal laws, regulations, or policies? Is the program’s systemic advocacy focused on all kinds of LTC facilities residents and all aspects of residents’ lives and concerns? Is the work coordinated with others so that coalitions, rather than the ombudsman programs alone, are seeking systems change? Is an annual report with substantive information on needed changes in state or federal laws, regulations, or policies prepared and circulated widely? All state ombudsmen programs carry out some of these functions, but wide variations occur in the level of effort directed toward them and in the output derived from them (AoA/OIG, 1993). That is, few states probably do exemplary work in all activities pertinent to systemic advocacy; by contrast, the committee found evidence of only minor efforts toward systemic advocacy in a few states. According to Chaitovitz (1994b), some ombudsmen report that they are not able to pursue all avenues that they might consider appropriate to advocate for systemic changes. Key examples of activities that some ombudsmen are allowed to undertake and that others find more difficult to implement include: commenting on or testifying about proposed or existing legislation, circulating status reports on the ombudsman program to state legislatures, initiating contacts with legislators, disagreeing publicly with any state executive branch position, distributing uncensored annual reports and position papers, initiating press conferences, responding to press inquiries, freely advocating for own funding bills, suing state-run facilities, and suing the state. Some ombudsmen rely exclusively on education and inservice training to accomplish systemic change. They attempt to leverage the impact of these efforts. Thus, when resources and opportunities allow, they provide these educational services to an array of relevant entities, including staff of facilities, citizen councils, and staff of regulatory, agencies. Nevertheless, in one study only 36 percent of the ombudsmen in 50 counties reported providing training to staff of B&C homes (Hawes et al., 1994). None of the ombudsmen surveyed in another recent study gave clients information on the level or quality of care offered by a given facility, and only about 24 percent reported that they make licensure survey report findings available when providing more general information on B&C homes in their area (Phillips et al., 1994).

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act FACTORS THAT ENHANCE OR IMPEDE COMPLIANCE WITH THE PROGRAM’S FEDERAL MANDATES States and localities vary on the extent to which they comply with the law and spirit of operating statewide LTC ombudsman program. Similarly, states are affected in different ways and to different degrees by a range of factors that have an impact on compliance. Generally, factors that influence states’ levels of compliance fall into three groups: leadership within the organizational framework, elements of infrastructure, and institutional care context. Leadership Within the Organizational Framework Leadership from the Administration on Aging During the developmental stage of the LTC ombudsman programs, AoA supported model grants to explore methods for promoting and developing ombudsman services. As states began to set up ombudsman programs, regional and central AoA staff provided other support. For example, in 1976 AoA issued program instructions that helped clarify the program’s intent. In 1981 AoA funded five resource centers; these, along with national groups such as the Legal Services Corporation (LSC) and the National Citizens’ Coalition for Nursing Home Reform (NCCNHR), further assisted states in developing their ombudsman programs. Additionally, in the early 1980s, states received a series of 22 technical assistance materials from AoA on various aspects of ombudsman program development, including such items as roles and functions of volunteers, and sample job descriptions. However, during the last half of the 1980s, AoA provided little oversight and technical assistance to the states on the implementation of the ombudsman program, and most of that effort took the form of monitoring by regional offices. Since 1988, AoA has continuously supported a single national resource center for the LTC ombudsman program with a mission of training, technical assistance, and information dissemination.3 The committee found that state and local ombudsmen were willing to acknowledge openly the weaknesses of their programs. At the same time, they expressed confidence that the program is making positive changes in the lives 3   Between October 1988 and September 1993, the National Association of State Units on Aging (NASUA) operated the resource center with a subcontract to NCCNHR. In September 1993, a new four-year center was competitively awarded, this time to NCCNHR with a subcontract to NASUA.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act of individuals and in the LTC system overall. Several state ombudsmen expressed concern about the lack of clarity in how the program should be administered and the lack of meaningful compliance review from AoA. They suggest that, at a minimum, AoA ought to provide a checklist containing standards of performance or indicators of good practice against which each state can be assessed (Chaitovitz, 1994b). OIG (1991b,c) reported that ombudsmen made a similar request for AoA guidance. The federal government’s new emphasis on using program performance information for congressional policymaking, spending decisions, and program oversight is set forth in the Government Performance and Results Act (GPRA) of 1993—Public Law 103–62. AoA designated the ombudsman program to participate in the pilot project phase that precedes implementation of GPRA. This action, along with the implementation by AoA of the new National Ombudsman Reporting System (NORS) (described in Chapter 2) shows that the federal leadership is interested in gaining more meaningful information about the performance of the ombudsman programs. The committee encourages AoA to be more aggressive in monitoring compliance. Sanctions such as plans of correction might be given to states that are found to be out of compliance on significant performance measures. Ombudsmen state that they are unclear about what sanctions AoA is authorized to use, and no public record exists of sanctions being employed against the states because of noncompliance. AoA’s overall approach to compliance auditing should present a tone that encourages performance improvement, however, rather than one that adopts a punitive or heavy-handed regulatory stance toward states. Nevertheless, to better inform states of the policies and procedures available to AoA to enforce compliance of states in implementing the LTC ombudsman programs, the committee offers the following recommendation: 3.3. The committee recommends that the Assistant Secretary for Aging develop and distribute a policy statement detailing the sanctions the AoA is authorized to use to enforce state compliance with statutory mandates of the long-term care ombudsman program. The statement should describe the sanctions and explain which conditions require or justify invoking each sanction. The committee recognizes the dilemma that confronts AoA regarding the need to hold states accountable to a minimal level of performance in the absence of a set of standards. Nevertheless, a core set of operational standards can be employed now. As databases improve and provide information that makes more visible the links between process and structure features on the one hand, and products and outcomes on the other, these standards or capacity

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act indicators should be revisited. In Chapter 5, the committee proposes a set of essential standards that begins to address the need for a performance monitoring instrument. (See also Kautz and McDonough, 1990; National Center, 1991; OIG, 1991a,b,c; Kautz, 1993.) A constructive compliance monitoring program must review a state’s program in the context of a unified entity throughout the state. If a state provides ombudsman services through a decentralized program structure, single, local programs must be considered vital organs of the central state office, not separate and distinct programs unrelated to the performance of the state office or other local ombudsman programs. Compliance reviews should instill the value of a fully implemented, unified, and integrated program within each state. Accordingly, state LTC ombudsman programs need further guidance from AoA on the federal government’s expectations for operating a unified and cohesive Office of the State LTC Ombudsman program. Two key features and functions are relevant to whether a state ombudsman program operates as a cohesive unit: (1) methods by which local host agencies and individual ombudsmen are designated, trained, assisted, and monitored; and (2) methods by which the state unit on aging (SUA) carries out its responsibilities to the ombudsman program. To further enhance the development of the Offices of the State LTC Ombudsmen programs, the committee offers the following recommendation: 3.4. The committee recommends that the Assistant Secretary for Aging issue clearly stated policy and program guidance that sets forth the federal government’s expectations of state long-term care ombudsman programs. Such guidance should articulate operational principles in terms of basic elements of the program, including: definitions, criteria, and standards to determine whether a state ombudsman program is operating as a unified entity throughout the state; designation and de-designation process(es) of all host agencies and all individual representatives within the ombudsman program; process(es) by which the state ombudsman program provides assistance (including training) to local ombudsman programs; method(s) by which the state ensures that its ombudsman program has suitable access to facilities, records, and residents; method(s) by which the state ensures that its ombudsman program provides meaningful annual reports; and method(s) by which the state ensures that adequate legal counsel is an integral part of the ombudsman program both in representing the ombudsman program itself and in providing advice and counsel in matters related to long-term care facility residents.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act The lack of compliance at the Department of Health and Human Services (DHHS) with several key provisions of the 1992 OAA amendments for federal-level action on aspects of implementing the LTC ombudsman program is an indirect obstacle to compliance among the states. At the time of this writing, the department had not issued the called-for regulations on training and conflicts of interest. States must move forward with more comprehensive training programs for ombudsmen, and AoA should provide more guidance on acceptable standards for training curriculum and hours required. Similarly, states need further clarification from AoA on its expectations regarding how states are to comply with the conflict of interest provisions set forth in the OAA. During the time the committee did its work, AoA lacked a Director of the Office of LTC Ombudsman Programs. In authorizing this position and enunciating the essential responsibilities of the director through the 1992 OAA amendments, Congress acknowledged the need for substantive, effective, and visible advocacy at the federal level on behalf of elderly residents of LTC facilities. AoA supports a national LTC ombudsman resource center. The resource center is able to facilitate AoA in providing training and technical assistance to the states. The committee recognizes the importance that state ombudsmen attribute to the products and support they receive from the AoA-funded resource center grantee, and it encourages AoA to maximize opportunities for the resource center to work cooperatively with AoA’s central and regional offices to deliver training and technical assistance to the Offices of the State LTC Ombudsmen programs. The degree to which the federal government exercises leadership in the LTC ombudsman program can have demonstrable impact on state and local programs. The committee encourages AoA to carry through with the leadership responsibilities for the ombudsman program it has been granted by Congress. Accordingly, 3.5. The committee recommends that Congress direct the Secretary of the Department of Health and Human Services to implement the statutory provisions set forth in Public Law 102–375 that require a federal Office of Long-Term Care Ombudsman Programs in the Administration on Aging and that Congress explicitly provide an adequate appropriation in the Older Americans Act for the position of the Director of the Office of the Long-Term Care Ombudsman Program. 3.6. The committee recommends that the Assistant Secretary for Aging explicitly operationalize the federal government’s responsibility for oversight of the long-term care ombudsman program. This should include

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act (at a minimum) the following elements of program oversight: (1) active monitoring of programs by regional offices or the central office of the Administration on Aging; (2) effective technical assistance to the state programs; and (3) standards and procedures for training representatives of the Office of the State Long-Term Care Ombudsman. Should AoA adopt a more interactive stance with states for the purpose of improving the level of performance in the ombudsman programs, such action would also send an important message to state governments and their citizens. As analysts of the OAA have noted (Estes, 1979; Generations, 1991), accountability issues are not merely technical in their nature; they are ultimately political. Without good information on the ombudsman programs’ products and outcomes, AoA and Congress can justify almost at random whether to increase or decrease financial support for the program. By contrast, a more visible and meaningful performance-oriented database accompanied by information on where each state program stands in regard to operational standards cannot be hidden in a file cabinet. Congress, as part of the GPRA initiative, will have to reckon with information that links performance with capacity indicators. Answers will now be sought and received for important questions that have been asked, but not answered, before: If the LTC ombudsman programs provide a meaningful and unique set of services to residents in nursing facilities and B&C facilities in some locales, what is the minimum of resources necessary to ensure fully operational programs across the nation? How much funding is the federal government willing to provide? How much funding are states and local communities willing to provide? Leadership from State and Local Program Sponsors By their very design, decentralized programs such as the ombudsman program and others in the OAA result in weak lines of accountability (Estes, 1979). Features of many programs generally considered positive by program administrators (e.g., flexibility in organizational structure at the state level, use of volunteers, and use of local entities for housing ombudsman) can also hinder compliance. Competing program objectives in the aging network and the use of different time frames for measuring results add tension to competitive environments in which resources are scarce and create incentives for shifting accountability among multiple parties. Agencies comprising the aging network of SUAs and AAAs are accountable to multiple governmental jurisdictions at the local and state levels. Also, each agency may serve a different set of constituents. Although many

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act SUAs and AAAs are deeply committed to and provide support for the ombudsman program, others still provide little financial or ideologic support to programs that serve the elderly who reside in nursing facilities and other LTC facilities. The committee’s recommendation (3.4) calling for a more unified Office of the State LTC Ombudsman program should help to overcome many of these barriers. However, cooperation and coordination from SUAs and AAAs or other local host representatives are essential to achieving that goal. Elements of Infrastructure General Points Offices of the LTC State Ombudsman program and SUAs can best comply with operational mandates if their infrastructures are strong. Each state program must build its infrastructure in a manner that is as free of conflicts of interest as possible (see Chapter 4). Strong enabling legislation and program independence build a strong infrastructure. Program independence, in particular, allows the Office of the State LTC Ombudsman program to serve as the pivotal point for a unified entity throughout the state. In the Chaitovitz canvass (1994b), 10 state ombudsmen reported that neither legislation nor regulation adequately supports their program authority and independence. Other ombudsmen noted that legislation nominally protects their program independence, but that implementing program independence in a political environment is no easy task. Infrastructures are built with real resources; ombudsman programs that operate in compliance need more than authorization and compassion. Financial resources, information management, legal counsel, and human resources are key. (Chapters 5 and 6 provide more specific information on this topic. See Tables 5.5a through 5.5d in particular.) The committee recognizes that adequate legal counsel is an integral part of the ombudsman program and makes additional comments herein. Adequate Legal Resources The OAA charges SUAs with the responsibility of ensuring adequate legal counsel for the LTC ombudsman program. In the same section, the OAA also charges the SUA with ensuring that the Office of the State LTC Ombudsman program pursues administrative, legal, and other appropriate remedies on behalf of residents. The protection of residents’ rights is referred to no fewer

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act than 10 times in the basic mandate. Furthermore, in subsection (3)(G), the OAA charges the ombudsman with the responsibility to “analyze, comment on, and monitor the development and implementation of federal, state, and local laws, regulations, and other government policies and actions….” These directives illustrate functions of the ombudsman that, if effectively implemented, require legal counsel. However, in the absence of more specific definitions or guidelines as to what constitutes, “adequate” or “available” legal counsel, the determination of whether a state is in compliance with this provision is highly subjective. To date, AoA has provided no guidance on this element of infrastructure. Flexibility is an important attribute of the ombudsman program, and the findings of recent surveys indicate that states express widely varying needs for legal counsel (Chaitovitz, 1994b; NORC, 1994b). However, Congress had reasons for requiring that a state agency ensure that basic legal services be available. Arguably, the mandate implies that such services may not be made available if left to voluntary action, and that adequate legal counsel is needed to support the operation of the ombudsman program and its goals and objectives. Indeed, to require that a program pursue “administrative, legal, and other remedies to protect health, welfare, and rights of residents” without adequate legal counsel would invite failure. Very few state LTC ombudsmen view legal remedies, especially litigation, as the basis of their advocacy efforts or program needs. They nevertheless need quality legal assistance. A survey by the National Ombudsman Resource Center (1994b) indicates that less than half of the 27 state ombudsmen who responded to the question about quality of their legal support rated it as “very good” or “excellent.” Most rated it as “good,” “fair,” or “poor.” In other studies, about one-third of state ombudsmen report that the available legal counsel is inadequate to meet their needs in representing the ombudsman program, and in providing advice and counsel in matters related to LTC residents (AoA/OIG, 1993; Chaitovitz, 1994b). Ombudsmen note the following obstacles: (a) in-house government attorneys have conflicts of interest but no funds are available for obtaining outside counsel; (b) competition for limited legal staff results in the ombudsman program not gaining access to quality counsel in a timely fashion; and (c) the counsel is frequently of poor quality because the attorneys have little understanding of the intricacies of the ombudsman program or the LTC system. The Assistant Secretary for Aging at AoA is positioned to foster a variety of legal assistance resources for residents of LTC facilities. In the early years of the program, AoA leadership worked with the LSC to encourage local legal services programs funded by LSC to provide legal assistance to institutionalized as well as noninstitutionalized elderly. By federal statute, LSC grantees must target their services to indigent persons; thus, they are not

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act able to serve all residents of LTC facilities who may need legal counsel. Two of LSC’s grantees, the National Senior Citizens Law Center and Legal Counsel for the Elderly, focus on legal assistance for older Americans and over the years have helped support ombudsman activities. Leadership at the federal, state, and local levels in the ombudsman programs and at LSC and its grantees has changed over the years, and now is an appropriate time to renew contacts at the national level between the AoA and LSC. Additionally, AoA could facilitate access to the legal assistance resources supported through the P&As. The P&As have access to a nationwide legal assistance network that could be encouraged to help meet the legal needs of elderly residents of LTC facilities. A cooperative agreement between AoA and the national membership group, the National Association of Protection and Advocacy Systems, could identify priority areas in which P&A attorneys might work with local ombudsmen on behalf of elderly residents. AoA can also initiate efforts for cooperative agreements within the DHHS. The Office of the Inspector General (OIG) works with the State Medicaid Fraud Control Unit program to improve detection and eliminate fraud in state-run Medicaid programs. Additionally, the OIG employs its investigatory authority on behalf of residents of LTC facilities in circumstances that allege fraud, waste, or abuse. AoA is in a position to encourage the OIG to maximize the use of the office’s legal resources on behalf of residents of LTC facilities. For the purpose of fostering cooperation in this direction, the committee offers the following recommendation: 3.7. The committee recommends that the Assistant Secretary for Aging develop plans of action and cooperative agreements with the Legal Services Corporation, the National Association of Protection and Advocacy Systems, the National Association of Medicaid Fraud Control Units, and the Office of the Inspector General of the Department of Health and Human Services, to foster and encourage a variety of legal assistance resources for residents of long-term care facilities. As noted, SUAs are responsible for ensuring that adequate legal counsel is available to the ombudsman program. Ombudsman surveys indicate that three forms of legal support are available: (1) the Office of the Attorney General, (2) in-house counsel, and (3) a private attorney or legal services program (Owen and Schuster, 1994; NORC, 1994b). Given that most state ombudsmen are housed within state agencies, it is not surprising that most rely on their state Office of the Attorney General for advice, counsel, and legal representation. Some programs also rely on the “legal services developer”

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act position located within the SUA.4 In contrast, local ombudsmen programs rely very little on the Office of the Attorney General or other government attorneys, turning chiefly to legal services attorneys for advice, consultation, and legal representation. In states with inadequate legal support, SUAs should work more closely with the ombudsmen program in systematically identifying gaps in legal assistance and types of assistance needed, and in jointly planning strategies to address the gaps. To that purpose, the committee proposes the following recommendation: 3.8. The committee recommends that the Assistant Secretary for Aging require that each state unit on aging include in its state plan a description of how the state has funded and ensured the provision of adequate and independent legal counsel to the ombudsman program, including how all designated representatives of the Office of the State Long-Term Care Ombudsman are afforded legal counsel so that all their mandated duties and services can be and are performed. The committee recognizes that adequate legal resources are not an end in themselves but are an essential element of the ombudsman programs’ infrastructure. Without such resources, the program is greatly hampered in its ability to comply with other mandated provisions in the OAA such as to “identify, investigate, and resolve complaints that are made by or on behalf of residents,” to “pursue administrative, legal, and other appropriate remedies on behalf of residents,” and to “analyze, comment on, and monitor the development and implementation of federal, state, and local laws, regulations, and other government policies and actions.” Institutional Care Context Nursing Facilities Many of the problems that ombudsmen confront in their work are embedded in the structure, financing, and ideology of the LTC system, features not easily changed with the tools available to the ombudsman (Greene and Monahan, 1981; Buford, 1984; Holder and Frank, 1984; IOM, 1986; Feder et al., 1988; Mason, 1994). (See also Kane and Caplan, 1990; McGinnis, 1991; NIDR, 1992.) As a society, we have no coherent, ethically sound long-term care policy especially for the very frail and vulnerable. The LTC non-system 4   Some states employ a paraprofessional instead of an attorney for this function.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act is a residual social structure to which people are consigned in part because other systems—both formal and informal, medical and familial—cannot or will not care for them. Closing state mental institutions has not prevented or eliminated dementia; instead of residing in mental institutions, older persons with dementia reside in nursing facilities. Nursing facilities are filled with people who do not want to be there. Many are in the process of dying and suffer all the attendant physical, emotional, and spiritual pain. Often their families have abandoned them, or they themselves are filled with anger and guilt. Holstein (1994) postulates that some problems are endemic to the nursing facility industry and that these are more resistant to change than the ombudsman program itself. She reasons that the seemingly inescapable problems of the LTC institutionalized system establish the kind of disparate power relationships that legitimately motivate the adversarial orientation of some ombudsmen. Obstacles created because of internal limitations of the ombudsman program are not easily overcome.5 Holstein (1994) suggests the need for both substantial commitment in resources and stronger enabling legislation at the state and federal levels. She questions whether ombudsmen will ever be given a full chance to effect change, if such reforms are not made. Another expert in LTC has a somewhat different perspective: “The ombudsman program is a necessary but totally inadequate response to what is a national disgrace. Unless its mission includes systemic reform, it can be a distraction. Individual ombudsmen need real support to understand where the hurts originate, and they as a group need techniques so that their collective wisdom can feed back into the broader society” (C.J.Fahey, Third Age Center, Fordham University, personal communication, October 1994). Board and Care Homes The regulatory system for B&C settings is limited in its impact in assuring quality and protecting residents’ rights. These limitations flow from both the structure of the existing regulatory environment and the complex nature of the industry itself. Residents’ rights applicable to B&C settings are not as clearly specified in most state licensure laws as they are in state and federal regulations affecting nursing facilities. Yet, Phillips and colleagues (1994) point out that this key impediment to ombudsmen in providing services to 5   One example of the ombudsman program’s limitations, from some perspectives, is its lack of enforcement authority. However, the ombudsmen community has not formed a consensus as to whether ombudsmen should have enforcement authority.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act B&C residents is one of the chief reasons that an enhanced role for ombudsmen in B&C homes is so important. In most states, ombudsmen play little or no part in inspections; and, like state licensing agencies, they may face difficulties in gaining access to unlicensed B&C homes, even if they wish to visit such homes. Given the limited understanding about the appropriate way to assure quality of care and life in B&C homes (Reschovsky and Ruchlin, 1993; Hawes et al., 1994), the role ombudsmen should play, in order to be most useful, is still in question (Phillips et al., 1994). In addition to these structural complexities, the B&C environment itself presents other challenges. B&C homes are extraordinarily diverse, defying easy classification and uniform approaches. Their residents, too, are diverse and may actually demand a more complex and potentially expansive approach for individual and systemic advocacy than nursing facility residents. Chaitovitz (1994b) reported several factors that ombudsmen identified as obstacles to their providing more intense coverage of B&C facilities: Ombudsman need specific training concerning B&C issues. Many volunteers find that they have difficulty building relationships with chronically mentally ill residents of B&C homes. Visits by ombudsman to small personal care homes may seem like an intrusion to provider, resident, and volunteer alike; access therefore is often difficult. Many volunteer ombudsman rely on positive feedback from volunteer coordinators, social workers, and other staff more likely found in nursing facilities, and they do not find this interaction in the relatively isolated atmosphere of B&C homes. In metropolitan areas, B&C homes are frequently located in high crime areas and safety concerns discourage ombudsmen. SUMMARY Although elements of the ombudsman programs have been vigorously implemented, in certain states and locales, overall the ombudsman program has not been fully implemented, especially with regard to the OAA provisions that call for ombudsman services to be available and accessible to residents of LTC facilities. The committee finds the following: Not all residents of LTC facilities in need of advocacy assistance have meaningful access to the services of an ombudsman. Many residents of LTC facilities are unaware of, and thus would probably not be able to use, ombudsman services. This lack of awareness

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act stems from two causes: infrequent visitation to LTC facilities by ombudsmen in many parts of the country and little use of other methods to inform the community about ombudsman services. For the most part, ombudsmen provide timely responses to complaints. However, serious problems exist in some locales. For example, some state programs serve a large proportion of their LTC residents largely through one central toll-free telephone service. In such cases, it is not unusual for ombudsmen to investigate complaints through telephone inquiries only. Those residents most in need of having the ombudsman assist in protecting their health, safety, welfare, and rights may be reluctant or simply unable to initiate complaints to the ombudsman by such means as telephone calls because they are too frail or cognitively impaired. Implementation of the ombudsman program for residents of nursing facilities has been uneven among and within states. Implementation of the ombudsman program for residents of B&C homes has not been achieved in any significant way except in a very few states. Too many states take only piecemeal, fragmented action, focusing primarily on responding to complaints by individual residents of nursing facilities. These states are not in compliance with the spirit of the program provisions as stated in the OAA; that is, the Offices of the State LTC Ombudsman program are not functioning as a statewide, unified, integrated program delivering a range of individual, systemic, and educational services. AoA has not mandated any level of implementation of the legislated LTC ombudsman program, nor has the agency monitored the implementation efforts of states. Although ombudsman programs vary in the amount of staff and volunteer resources they expend to serve the residents of LTC facilities, no minimum acceptable level of effort has been agreed upon to signify that an ombudsman program has been implemented appropriately. States do not uniformly comply with the essential requirements for operating statewide ombudsman programs, and neither AoA nor any other federal agency employs mechanisms to require such compliance. AoA has not developed technical guidance materials that inform states of the federal government’s operational definition of an implemented Office of the State LTC Ombudsman program. Ombudsman programs need competent legal advice and backup, including the ability to help nursing facility residents pursue issues in the courts and in regulatory hearings. These capacities are extremely uneven across the country.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act With the exception of a very few states, SUAs have not fulfilled their responsibility to ensure that adequate and independent legal counsel is available to the ombudsman programs for the purpose of providing advice and counsel related to LTC residents. The committee considers the mission of the LTC ombudsman program to be worthy in purpose and deserving of support from public funds. Accordingly, the programs should be operating throughout the country in compliance with federal mandates. The committee proposes eight recommendations as a result of its review. Two recommendations propose that the program serve those residing in LTC facilities who are not currently served by the ombudsman programs. Four recommendations suggest means by which the federal government can strengthen its leadership and oversight role for the ombudsman programs. The committee’s discussion emphasizes that adequate legal counsel is a significant component of a healthy infrastructure needed to ensure that the ombudsmen programs are complying with the federal mandates. To that purpose, the committee presents two recommendations.