Summary

Long-term care (LTC) ombudsmen1 advocate to protect the health, safety, welfare, and rights of the institutionalized elderly in nursing facilities2 and board and care (B&C) homes. Given the dramatic changes that are occurring in the entire LTC sector, the need for such advocates is compelling. A multiplicity of factors—sociodemographic, economic, political, and clinical—are converging in ways that call for significant attention to the quality-of-care and quality-of-life needs of all persons needing LTC services.

“LTC services” is a broad term that describes a constellation of services used by people with disabilities to achieve a meaningful life according to their own expectations and yardsticks. These services include health care, social services, housing, transportation, and other supportive services. Typically, LTC is associated with the elderly, although many older persons never require such care and many who are not elderly do require LTC services. Elderly residents of LTC facilities (nursing facilities, B&C homes, and other group residential homes) are the designated constituency of ombudsmen.

1  

The term “ombudsmen” carries no meaning with respect to the gender of the occupant of the position. Indeed, in the United States, the vast majority of long-term care ombudsmen are women.

2  

In this report “nursing facility,” the technical term for a Medicaid-certified nursing facility, is used more broadly to describe any nursing home—whether or not it is Medicaid-certified, Medicare-certified, or private-pay.



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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Summary Long-term care (LTC) ombudsmen1 advocate to protect the health, safety, welfare, and rights of the institutionalized elderly in nursing facilities2 and board and care (B&C) homes. Given the dramatic changes that are occurring in the entire LTC sector, the need for such advocates is compelling. A multiplicity of factors—sociodemographic, economic, political, and clinical—are converging in ways that call for significant attention to the quality-of-care and quality-of-life needs of all persons needing LTC services. “LTC services” is a broad term that describes a constellation of services used by people with disabilities to achieve a meaningful life according to their own expectations and yardsticks. These services include health care, social services, housing, transportation, and other supportive services. Typically, LTC is associated with the elderly, although many older persons never require such care and many who are not elderly do require LTC services. Elderly residents of LTC facilities (nursing facilities, B&C homes, and other group residential homes) are the designated constituency of ombudsmen. 1   The term “ombudsmen” carries no meaning with respect to the gender of the occupant of the position. Indeed, in the United States, the vast majority of long-term care ombudsmen are women. 2   In this report “nursing facility,” the technical term for a Medicaid-certified nursing facility, is used more broadly to describe any nursing home—whether or not it is Medicaid-certified, Medicare-certified, or private-pay.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act ORIGINS OF THE STUDY AND REPORT This report from the Institute of Medicine (IOM) addresses important aspects of the LTC ombudsman program—specifically the LTC ombudsmen’s ability to deal with problems that affect the care provided to and the quality of life achieved by elderly residents of LTC facilities. The ombudsman program arose in response to the widespread perception of problems in nursing facility quality. The program began in 1972 through five state demonstration projects that were funded by the Department of Health, Education, and Welfare’s Health Services and Mental Health Administration. The Administration on Aging (AoA) received responsibility for the program during a departmental reorganization in 1973 and has retained that responsibility over the past two decades. Recently, policymakers—at the urging of ombudsmen themselves— concluded that a more in-depth examination of the program is warranted, with the aim of clarifying present strengths and weaknesses and assessing the program’s potential for future contributions. To this end, the Congress of the United States directed, in the 1992 reauthorization of the Older Americans Act (OAA), that the Assistant Secretary for Aging conduct a study of the state LTC ombudsman programs. Through a contractual arrangement, the IOM carried out the study. This report is the culmination of that work, which commenced in October 1993. To conduct the study, the IOM appointed a 16-member expert committee comprising individuals recognized for their expertise in LTC, medicine, medical sociology, health care policy and research, clinical research, health law, health care administration, state government policy and program administration, consumer advocacy, public health, voluntarism, and the LTC ombudsman program (for details of committee members’ backgrounds and specialties, see Appendix D). The committee’s report examines four key issues: the extent of compliance with the program’s federal mandates, including conflict of interest issues; the availability of, unmet need for, and effectiveness of the ombudsman program for residents of LTC facilities; the adequacy of federal and other resources available to operate the programs; and the need for and feasibility of providing ombudsman services to older individuals who are not residing in LTC facilities. To inform itself on issues pertaining to this charge, the committee engaged in a variety of factfinding activities. These included site visits, seven commissioned papers, numerous contacts with a wide array of ombudsmen and

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act individuals with whom they interact, a one-day invitational symposium, and two meetings of a technical panel. THE LONG-TERM CARE OMBUDSMAN PROGRAM Concerns with the quality of nursing facilities, the care provided in them, and the government’s ability to enforce regulations in them led to the creation of the LTC ombudsman program in the early 1970s. In contrast to regulators, whose role is to apply laws and regulations, ombudsmen are supposed to help identify and resolve problems on behalf of residents in order to improve their overall well-being. The ombudsman program works alongside other programs, groups, and individuals engaged also in efforts to improve the quality of care and quality of life of residents in LTC facilities. Although the classic model of the ombudsman stresses neutrality and mediation, the role of the LTC ombudsman is considered a hybrid, since it was designed to encompass both active advocacy and representation of residents’ interests over those of other parties involved. Additionally, in the classic model the ombudsman intervenes between the government and individual citizens. In the case of the LTC ombudsman program, however, intervention usually also includes a private third party—the nursing or B&C facility. Today the LTC ombudsman program operates in all 50 states, the District of Columbia, and Puerto Rico. No single model can accurately describe these multifaceted programs. Variability in organizational placement, program operation, funding, and utilization of human resources has given rise to at least 52 distinctive approaches to implementing the program. The Office of the State LTC Ombudsman program is most often housed within the state unit on aging (SUA); 42 states have this arrangement. The SUAs in these states themselves vary in their organizational placement: some are housed in independent, single-purpose agencies; some reside in larger, “umbrella” agencies in which several other agencies report to a head office. Others are housed in independent state-run ombudsman agencies. Some even operate completely outside state government. Recent estimates of LTC ombudsman staffing put the number of full-time equivalent (FTE) paid staff at about 865. Volunteer ombudsmen number about 6,750, excluding volunteers who serve chiefly on advisory committees. Funding for LTC ombudsman programs is patched together from multiple sources at the federal, state, and local levels. Most federal funding comes from the OAA. Sources for other funding include state and local governments, area agencies on aging (AAAs), the United Way, and foundations. The primary activity required of LTC ombudsmen by the OAA is the identification, investigation, and resolution of individual complaints relating to

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act the residents of LTC facilities. The program clearly performs this function. In 1993, LTC ombudsmen received more than 197,800 complaints, lodged by more than 154,400 people. Ombudsmen are required to address and attempt to rectify the broader, or underlying, causes of problems for residents of LTC facilities. When working on the systemic level, ombudsmen’s responsibility to advocate for policy change includes evaluating laws and regulations, providing education to the public and facility staff, disseminating program data, and promoting the development of citizen organizations and resident and family councils. STATE COMPLIANCE WITH PROGRAM MANDATES If a state is operating a LTC ombudsman program in compliance with congressional mandates, the program will perform several functions. 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, which should be accessible, available, and meet the needs of residents of nursing and B&C facilities, and (2) systemic advocacy services. Findings Although in some states and locales elements of the ombudsman programs are vigorously implemented, the ombudsman program as a whole has not been fully implemented with regard to the provisions of the OAA 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. Given the lack of a frequent visitation pattern to LTC facilities by ombudsmen in many parts of the country and little, if any, evidence that other methods are used effectively to build an awareness in the community of the availability of ombudsman services, large numbers of residents of LTC facilities are unaware of, and thus would probably not be able to use, the ombudsman programs’ 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.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Those residents most in need of an ombudsman to 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 small number of states. The ombudsman program activities of too many states are piecemeal, fragmented, and focused primarily on responding to complaints that relate to individual residents of nursing facilities. These states are not in compliance with the spirit of the program provisions as stated in the OAA; the Offices of the State LTC Ombudsman programs do not function as a whole, statewide, unified, integrated program delivering a range of individual, systemic, and educational efforts. AoA has not mandated any level of implementation for the legislated LTC ombudsman program, nor has the agency monitored the states’ efforts at implementation. Although ombudsman programs vary in the amount of staff and volunteer resources being expended to serve the residents of LTC facilities, no agreed-upon level of effort exists to signify that an ombudsman program has been implemented at a minimum acceptable level in a state. 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 definitions of a fully implemented Office of the State LTC Ombudsman program. Ombudsman programs need competent legal advice and backup, including, when the circumstances call for legal interventions, assistance to LTC facility residents in pursuing issues in the courts and in regulatory hearings. The availability of these services is extremely uneven across the country. Except in 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.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Recommendations on Compliance 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 operate throughout the country in compliance with federal mandates. The committee proposes eight recommendations as a result of this part of its review.3 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. 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. 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: 3   In this summary, recommendations are numbered to correspond to the numbering scheme used in the chapters in which they are found. For example, Recommendation 3.1 is the first recommendation that is made in Chapter 3.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 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. 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 Director of the Office of Long-Term Care Ombudsman Programs. 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 (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. 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. 3.8. The committee recommends that the Assistant Secretary for Aging require that each state unit on aging include in its state plan a

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 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. CONFLICTS OF INTEREST Legislative and Conceptual Aspects The determination of whether actual or potential conflicts of interest in the administration and operation of the LTC ombudsman programs exist depends primarily on two factors: (1) the definition of or parameters describing occurrences of conflicts of interest and (2) the circumstances of the situation under review. Without a doubt, most state and local ombudsman programs are subject to one or more of the conflicts of interest reviewed by the committee. Of particular concern to the committee is the prevalence of potential and real conflicts of interest that arise from the structural location of many of the Offices of the State LTC Ombudsman programs. Situations in which real, potential, and perceived conflicts of interest exist may be more prevalent than is typically understood, and perceived conflicts of interest may be as detrimental to operating the ombudsman program as real conflicts of interest. All conflicts of interest work to the disadvantage of the vulnerable client. Ombudsmen—particularly state ombudsmen—operate in a politically charged environment accentuated by the fact that most often the state ombudsman is a state employee. Government cannot function efficiently if its employees work in opposing directions. All levels of government in the United States have formal and informal standards that govern chains of command. Every executive branch of government justifiably exercises some control over its employees’ contacts with the legislative branch and media. By federal statute, the ombudsman is required to speak out against government laws, regulations, policies, and actions when the circumstances justify such action. Taking such steps, however, is antithetical to the hierarchical rules of government. It is not surprising, therefore, that conflicts occur. The imposition of a state’s routine chain-of-command rules on the ombudsman can significantly constrain his or her independence, although no person in such situations may intentionally act to interfere with the work of the ombudsman. The committee began its review of conflicts of interest with the statutory provisions of the OAA that prohibit conflicts of interest in the LTC ombudsman programs. The parameters set forth in the act to identify situations of conflicts of interest are quite limited and outdated, focusing

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act almost exclusively on financial interests and nursing facility settings. They provide little guidance for addressing the conceptually related variations of conflict of interest—conflicts of loyalty, commitment, and control—that characterize the environments in which the ombudsman program operates in the 1990s. The committee reviewed four major types of conflicts of interest: (1) organizational, (2) individual, (3) those arising from willful interference in the independent operation of the program, and (4) those related to the provision of legal counsel. Conflicts of interest can be dealt with either by prevention or by detection and correction. These are concepts and approaches similar to those in the quality-of-care field. Not all conflicts of interest can be prevented in the ombudsman programs, although prevention is clearly the preferred method of program administration and the most effective means of assuring compliance with the statutory provisions. Numerous mechanisms can ameliorate individual conflicts of interest, such as disclosure, ethical behavior, and accountability to the public. Recommendations on Conflicts of Interest The committee determined that conflict of interest problems are sufficient to warrant greater vigilance and a broader array of tactics to prevent, identify, and correct pertinent and significant conflicts. To that end, the committee offers four recommendations. 4.1. The committee recommends that Congress amend the Older Americans Act to include the following policy directive. By fiscal year 1998, no ombudsman program should be located in an entity of government (state or local) or agency outside government whose head is responsible for: licensure, certification, registration, or accreditation of long-term care residential facilities; provision of long-term care services, including Medicaid waiver programs; long-term care case management; reimbursement rate setting for long-term care services; adult protective services; Medicaid eligibility determination; preadmission screening for long-term care residential placements; or

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act decisions regarding admission of elderly individuals to residential facilities. 4.2. The committee recommends that the Assistant Secretary for Aging adopt a clear policy that prohibits parties who provide, purchase, or regulate services that are within the purview of the ombudsman program from membership on policy boards having governance over the long-term care ombudsman program. The policy should not prohibit these parties from membership on boards and councils that serve solely in advisory capacities. 4.3. The committee recommends that the Assistant Secretary for Aging establish procedures and resources by which to identify potential conflicts of interest in the areas of loyalty, commitment, and control that are pertinent to the long-term care ombudsman and ombudsman representatives and provide guidance on how to address such conflicts of interest. 4.4. The committee recommends that each state unit on aging, in exercising its responsibility to ensure that legal counsel is available without conflict of interest to the statewide long-term care ombudsman program, adopt the following three principles to guide the selection of counsel: For purposes of representing the ombudsman in (a) employment, contract, or other administrative functions and (b) litigation brought against the ombudsman in connection with the performance of his or her official duties, representation by the state’s office of the attorney general is appropriate and generally free of conflict of interest. If advice and counsel related to the rights of long-term care facility residents is provided by a government-employed lawyer, then the lawyer and agency employing the lawyer, including any “umbrella” agency, should not advise or represent other agencies or interests that could conceivably have a conflict of interest with the resident’s interests or ombudsman’s responsibilities. If advice and counsel related to the rights of long-term care facility residents is provided by a lawyer not employed by the government, then the ombudsman should receive assurances of conformance to state rules of professional conduct for the legal profession.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act EFFECTIVENESS OF THE OMBUDSMAN PROGRAM The committee attempted to assess the effectiveness of the state LTC ombudsman program from several perspectives. The underlying impediment to sound assessment has been the lack of reliable and valid information that could be fit into any defensible summative evaluation format. For that reason, the committee opted for a formative evaluation effort—one that would highlight program issues, strengths, and weaknesses and would point to more specific questions deserving in-depth attention in coming years. Continuance of the Ombudsman Program On the basis of all the information it reviewed, collected, and analyzed, the committee concludes that the ombudsman program serves a vital public purpose. Every year the LTC ombudsman program helps many thousands of individual LTC facility residents, particularly those in nursing facilities, with a wide range of problems and concerns. The committee thus takes a strong supportive stance with respect to the ombudsman program. To underscore this commitment to the mission of the program: 5.1. The committee recommends that Congress continue the long-term care ombudsman program as set forth in the Older Americans Act. Stating such a recommendation may seem superfluous from a group empaneled to examine a program that, on the face of it, serves a worthy cause and a needy population. However, the committee took seriously the question of whether the program merited continuation in its present form (or at all). Having concluded that it does, the committee intended, through the above recommendation, to make clear that the aims of those who crafted the original program and its subsequent modifications remain consequential today. The LTC ombudsman program can justly claim to have improved the system of LTC services. Through systemic advocacy work and educational efforts, the state programs, individually and collaboratively, have brought to the attention of state and federal policymakers, regulatory agencies, and provider organizations a host of conditions that can and should be changed to improve the health, safety, rights, and welfare of LTC residents. Examples of changes advanced or promoted by ombudsman programs (often in conjunction with other organizations) include: enactment of the federal Nursing Home Reform Law of 1987 (in particular, provisions pertaining to quality of care and quality of life); increased personal needs allowances; protections from involuntary discharge and room transfers; reduced use of physical restraints;

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act documenting and analyzing the full range of activities of the long-term care ombudsman programs. To follow up this overall recommendation about information systems for the ombudsman program, and reflecting its concern about the paucity of comprehensive and accurate data to assess program activities and performance, the committee concluded that additional, more specific, or more technical points should be made with respect to data and information systems. Two recommendations pertaining to these point are as follows: 5.4. The committee recommends that the Assistant Secretary for Aging continue the efforts of the Administration on Aging to develop, refine, and implement a uniform data collection and reporting system. The committee recommends, at a minimum, that the data system should: be based on a manageable number of uniform and reliable data items—each of which has precisely specified, field-tested definitions; be derived from annual statistical reports submitted by state long-term care ombudsman offices that provide information in terms of the data items in the previous point; include a clear indication of status of complaint resolution from a consumer perspective; be used to provide feedback to state and local ombudsman programs; be available for public use to foster research and inform decision making; incorporate methods and procedures for continuous revision and improvement; and be reviewed and updated no less than once every three years. 5.5. The committee recommends that the Assistant Secretary for Aging periodically conduct audits of the data collection and reporting systems of state ombudsman programs to ensure that all states adhere to the national standards of the uniform data collection and reporting system. The committee underscored the importance of well-defined, accurately reported, uniform data in which each item has precisely the same meaning for all state programs. Committee discussion emphasized the necessity of assuring that the burden of reporting is minimized and realistic, given the facts that staff resources are limited and that volunteers are crucial in data collection efforts. Time spent recording data is time not available for direct service. Thus, all items intended for a formal data collection instrument should be carefully

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act examined and included only if they have demonstrated utility for AoA or state or local ombudsman programs (or, ideally, both). Preference should be given to items that are useful in documenting the nature and outcomes of the full range of ombudsman services. Committee members expressed particular interest in the value of all state ombudsmen offices commenting consistently on four specific elements of information, as noted in this recommendation: 5.6. The committee recommends that the Secretary and Assistant Secretary for Aging, Department of Health and Human Services, require that each Office of the State Long-Term Care Ombudsman include in its annual report, in addition to currently required elements, information on and comments about: the level of awareness of residents, their agents, and other parties regarding the ombudsman program, and the availability of ombudsmen to individual residents; the extent to which the complaints and concerns of residents have been satisfactorily resolved; the extent to which ombudsmen have provided input into activities designed to improve the overall system of care and services for long-term care residents; and the extent to which ombudsmen have improved the overall system of care and services for long-term care residents. Research Imperatives Almost no evidence exists that causally links the activities and the outcomes of the ombudsman program. For example, little, if any, empirical information relates participation in nursing facility surveys or development of an annual report with such outcomes as changes in LTC facility practices that show more respect for residents’ rights or revisions in state or federal laws that provide legislative backing for residents’ rights. Just as research is being conducted to assess linkages among processes, structures, and outcomes in various aspects of the U.S. health care system, so too the need exists for such research relating to the LTC ombudsman program. To this purpose, the committee offers the following recommendation: 5.7. The committee recommends that the Administration on Aging, the Health Care Financing Administration, the Agency for Health Care Policy and Research, other government agencies, and foundations support research to develop valid and reliable measures for assessing the impact

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act of ombudsman activities on outcomes relative to the well-being of residents of long-term care facilities, at both individual and systemic advocacy levels. Adequate Management of Volunteers A prerequisite to effectiveness is adequate resources. Paid staff is the most crucial of all resources. To ensure that capacity exists for an effective program, staffing issues must be addressed for each state LTC ombudsman program, quite apart from funding issues. Based on site visits and other data gathered and analyzed, the committee agreed that staffing resources were minimal to inadequate from a national perspective. The committee was particularly interested in information that suggests that many of the more “successful” programs make good use of a large number of volunteers. Use of ombudsman volunteers is positively associated with routine visitation and number of complaints made and resolved. This fact calls attention to the importance of recruiting, training, and retaining volunteers and to their singular contributions to the adequate functioning and performance of the program. Volunteers can provide a level of authenticity and consumer “grassroots” participation that is lacking in most other systems designed to protect and support the frail elderly. The continued use of well-trained volunteers is very much in keeping with the original intent and design of the program. The committee concluded that the establishment of a standard staff-to-volunteer ratio was needed to protect and manage this resource. Thus, in setting the standard recommended here, the span of management of individuals was emphasized rather than the quantity of effort provided per volunteer (i.e., hours volunteered). The committee suggests a minimum standard for this staff-to-volunteer ratio of 1:40. It strongly encourages state LTC ombudsman programs that involve volunteers to maintain paid staff-volunteer ratios at the more robust level of 1:20. 5.8. The committee recommends that the Assistant Secretary for Aging establish a standard for ensuring the adequate management of volunteers who serve as designated ombudsmen. The committee suggests that the ratio of staff to volunteers be in the range of 1 paid full-time equivalent manager for every 20 to 40 volunteers.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act ADEQUACY OF RESOURCES Financial Resources and Program Performance The full intent of Congress with respect to the LTC ombudsman program has not been met in all—indeed, perhaps not in any—state of the union. Some states fall short in not having expanded to B&C homes, other states do not have adequate cycles of visitation for all LTC facilities, some states operate fragmented programs and individual advocacy efforts that have no link to preventive or educational system efforts, and still others lack appropriate access to legal services. Many factors compromise the fulfillment of congressional—and public— expectations. A significant factor is the overriding realities of budget shortfalls and inequitable resource allocations. At the heart of many of the problems lie deficiencies of financial resources rather than any lack of interest or basic commitment to the LTC ombudsman program or LTC facilities. In addressing the subject of adequacy of resources, the committee confined its discussions to resources for bringing the program into full implementation and compliance with today’s statutory mandate for nursing facilities and B&C homes. It did not attempt to forecast the level or type of resources that might be needed to fulfill any possible expansion of the program (with respect to LTC, to the elderly, or to the nation as a whole secondary to comprehensive health care reform). The committee approached the question of whether federal and other resources supporting the LTC ombudsman programs were adequate by identifying, first, some proxy measures of performance and, second, some levels of effort that link to resources. Its analysis included a review of such factors as the number of FTE paid staff per number of LTC beds, peer nominations of successful programs, and visibility. The available data, however, does not indicate that a straightforward relationship exists between staffing relative to LTC beds and the fulfillment of the duties of the ombudsman program. By triangulating on data from several sources, the committee arrived at the conclusion that resources are not adequate for each state LTC ombudsman program to perform at a level that ensures compliance with even the basic, decade-old mandates of the OAA ombudsman program. In the committee’s judgment, 1 FTE paid staff per 2,000 LTC beds is an essential resource standard, and it provides a measure against which the adequacy of resources can be judged. The committee concludes that, at a minimum, additional resources are needed to support an increase of about 300 FTE paid staff. Using the FY 1993 average national program expenditure of approximately $43,240 per FTE paid staff supports the argument for an increase of $13.2

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act million beyond FY 1993 total spending. If the current distribution of resources remains the same, then federal sources would have to supply approximately $8.8 million in new dollars; state and local sources would have to supply $4.4 million. In the committee’s view, therefore, a federal appropriation within five years of about $32.5 million ($23.7 million plus $8.8 million) is a defensible target. Assuming an inflation rate of 4 percent per year, estimates yield a target figure for FY 1998 of approximately $39.5 million in federal funds. 6.1. The committee recommends that by fiscal year 1998 Congress increase the appropriations through Title VII, Chapter 2 of the Older Americans Act for the state long-term care ombudsman programs to an amount that ensures that all state Offices of the Long-Term Care Ombudsman program are funded at a level that would permit them to perform their current functions adequately. The committee further recommends that the factor of 1 full-time equivalent paid staff working as an authorized, designated ombudsman per 2,000 long-term care beds be used as a base indicator of performance and a unit of effort to determine the amount of additional resources needed. The committee recognizes that further analysis is needed to determine more accurately the level of additional funding needed at the national level to bring each state up to a minimum level of resources. Formula for Allocating Federal Funds and Level of State Contributions The committee recognizes the need to distribute federal funds to states in a manner that more rationally considers the “beneficiaries” of the ombudsman programs—that is, the elderly residents of LTC facilities—and to that purpose it recommends that the distribution formula for Title VII-2 funds be changed. The formula for allocating federal funds under Title VII-2 of the OAA is based on total numbers of persons age 60 and older. This formula has several drawbacks from the perspective of need and equity in the context of the ombudsman program’s mission. For example, states vary in the ratio of LTC beds to population 60 years of age and older, and some states with a high percentage of the nation’s population in that age range have a low percentage of the nation’s LTC beds. Thus, in addition to arguing for a meaningful increase in federal appropriations for the ombudsman program, the committee has concluded that the major drawbacks of the current state-by-state allocation strategy must be addressed. Accordingly:

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 6.2. The committee recommends that Congress revise the interstate formula for allocating funds under Title VII, Chapter 2 of the Older Americans Act and further recommends that Congress give consideration to equitably distributing funds on the basis of such factors as the number, size, and type of long-term care facilities in each state and wage and cost-of-living indices. At present, state monetary matching is not required for federal dollars appropriated under Title VII of the OAA, as it is under Title III-B. This is a major inconsistency within even a single program. Moreover, it is one that may permit states to avoid giving the program its intended level of support, in particular if increases are made in federal appropriations through Title VII-2, as is recommended by the committee. According to the committee, state and local governments and entities have a responsibility to provide significant financial support to the program. The committee did not examine the details of a required percentage match, in either theoretical or practical terms. It did, however, agree that a match of no less than 20 percent of federal funds would be a defensible minimum. 6.3. The committee recommends that Congress require that states match the federal funding they receive under Title VII, Chapter 2 of the Older Americans Act appropriations for the long-term care ombudsman programs and that the state match should be no less than 20 percent. Management of Fiscal Resources The committee makes two recommendations to enhance the management of fiscal resources. The committee believes that state ombudsman offices should have unrestricted knowledge of their own budgets and, within the boundaries permitted by state budget policy and procedures and required by federal mandates for compliance, decision making-authority among line-item expenditures. Host agencies should exercise prudent judgment regarding the use of ombudsman service monies to support administrative costs. The committee recognizes that contracting and host agencies may need to use ombudsman program funds to offset some administrative costs. For the most part, according to information available, local host agencies tend to provide additional resources to the ombudsman programs rather than the other way around. During this study, however, the committee became concerned about the possibility that in some locales a series of host agencies may be assessing administrative charges against the earmarked ombudsman program budget to a degree that severely limits the ability of the ombudsman and

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act designated representatives to deliver services. This practice becomes especially burdensome when the budget of a local ombudsman program administratively moves through two or more levels of host or contracting agencies, each of which assesses a fee against the ombudsman’s budget. 6.4. The committee recommends that the Assistant Secretary for Aging issue program guidance to states that stresses the importance of delegating to the Office of the State Long-Term Care Ombudsman responsibility for managing all of the human and fiscal resources earmarked for the state ombudsman program within the boundaries of what is permitted by state budget policy and procedures and required by federal mandates for compliance. The Office of the State Long-Term Care Ombudsman program should in turn work with local ombudsman programs and their host agencies to assign fiscal management responsibility to appropriate managers. 6.5. The committee recommends that Congress direct the Office of the Inspector General, Department of Health and Human Services, to conduct an audit across the states of expenditure practices in the ombudsman programs to determine the extent of diversion of ombudsman program funds for administration and indirect costs and its relation to multiple sponsoring agencies. Congress should subsequently review the audit’s findings to determine whether congressional or administrative action is needed to prevent excessive use of ombudsman program resources for host agencies’ administrative costs. Unmet Need and Unfunded Responsibilities The committee’s report discussed the question of “unmet need” —that is, the expectations that Congress, the elderly community, and others have for the ombudsman program, which frequently go beyond the present tasks assigned through the OAA. In fact, unmet need is not confined to possible or future program mandates; it exists today in the majority of states with respect to noncompliance of their ombudsman programs in serving residents of B&C homes. Inherent in the ombudsman’s advocacy role are a plethora of strategies not being consistently addressed, including interagency rapport, involvement with other community LTC and advocacy programs, administrative advocacy, and legislative lobbying—all for the purpose of influencing the care and well-being of LTC residents aged 60 and older. With respect to adequacy of funding, the committee concludes that the present level of support for the ombudsman program is completely insufficient to allow it to expand to satisfy these unmet needs. The committee asserts

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act unequivocally that the first priority is that the program be provided with resources commensurate with meeting all the current mandates, including those that have existed, but been neglected, since 1981. That position underlies the thrust of earlier recommendations about federal funding, the allocation formula for that funding, and the state match. If, however, Congress or others determine that expansion of the program beyond its present mandates is desirable, then the committee wishes to go on record with respect to the fiscal realities of that movement. Specifically: 6.6. The committee recommends that, if Congress mandates additional responsibilities for the ombudsman programs, then Congress should also provide adequate additional appropriations to the ombudsman program. NEED FOR AND FEASIBILITY OF EXPANDING THE OMBUDSMAN PROGRAM The committee accepts the conventional wisdom that self-advocacy by consumers is the most desirable solution to many of the problems consumers face. Further, the committee also acknowledges that frail elderly people receiving health care and LTC services, ranging from skilled home health care to the wide range of in-home services funded under home- and community-based waivers and state-funded programs, may be vulnerable to neglect, abuse, and poor care. Such consumers of health care and LTC services, especially persons who cannot advocate for themselves when confronted by systems that are complex, fragmented, and cost-conscious, need an independent intermediary and advocate. Such advocates do exist in some places and in some capacities, but they cannot always act expressly on behalf of the consumer, provide both individual and systemic advocacy, or work preventively. The 13 states that have expanded ombudsman services to health care and LTC consumers outside of LTC residential facilities have gained limited experience to date. The committee heard testimony that this circumstance arises, in large measure, from inadequate resources to implement and operate a fully viable program. The result, however, is that little empirical evidence is available to support decision making on whether and how the current ombudsman program ought to be expanded. On the basis of what is already known, most committee members believe that some entity or individual—whether or not it is the current LTC ombudsman—is needed to answer questions, to provide systemic advocacy, and to intervene in problem situations for some consumers.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Other activities are in place ostensibly to help address the needs and interests of vulnerable people receiving community health and LTC services. These include: case management programs; the Adult Protective Services efforts available in most states; the home care complaint hotlines mandated by law in 1987, which have been variably implemented across the United States; and licensure, certification, and survey processes for home health agencies. In addition, public and private guardianship and conservatorship policies are meant to ensure that those unable to make decisions have an agent to act in their best interests. All these mechanisms have strengths and limitations. It is unclear, therefore, whether the solution to these problems is to strengthen one or more of the existing mechanisms, combine and strengthen advocacy functions into a new structure, or create an ombudsman as a superordinate, general operation. Various arguments are marshalled for and against expanding the current LTC ombudsman program to other settings, as a means of helping to fill deficits in the present system by which people receive health care and LTC services. Opponents raise both jurisdictional and operational points. Given the status of the current program, the various philosophical and operational considerations highlighted above, and the general lack of persuasive evidence on any side, the committee takes a cautious stance about expansion. Specifically: 7.1. The committee recommends that, before any consideration is given by a state to expand its long-term care ombudsman program to serve individuals other than those mandated by the Older Americans Act, the Offices of the State Long-Term Care Ombudsman programs that are supported with Older Americans Act funds fully implement existing mandates for serving older residents of long-term care facilities. This recommendation is intended to underscore the need to fulfill existing mandates before taking on added duties, regardless of how worthwhile they may be. The committee favors improving the operation of the current ombudsman program so that it provides a stronger base for any future expansion. Thus, the committee reemphasizes here the strong recommendations it has made about funding, program evaluation, and similar topics. Nevertheless, the committee believes that some interim steps may be taken to clarify further the desirability and feasibility of expansion. To that end: 7.2. The committee recommends that Congress, through the Secretary of the Department of Health and Human Services, direct the leadership of the Administration on Aging, the Agency for Health Care Policy and Research, the Administration on Developmental Disabilities,

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act and the Health Care Financing Administration to develop and support research and demonstration initiatives to determine how ombudsman advocacy services can best be delivered for consumers of health care and long-term care services. Because of the potentially significant role ombudsmen may have in ensuring quality of care in a reformed health care system, the committee also recommends that Congress require that the Secretary undertake these initiatives during fiscal years 1996–1999 and submit the accumulated results of such research to the Congress no later than January 1, 2000. CLOSING COMMENTS During its meetings, the committee conjectured about how a future LTC system might be configured and about the trends that might affect both the need for and nature of the ombudsman program. Consensus on these topics was neither desired nor sought. Based on all this input and its own deliberations, the committee concluded that rather substantial changes in the very nature of LTC are likely in the next decade; it also judged that any ombudsman program will face challenges to adapt and be responsive to changing needs. If the committee’s recommendations are adopted—including those related to increasing funding, minimizing conflict of interest, developing and enforcing program compliance, and enhancing the capacity of the ombudsman program to generate information about its activities and their effects—then policymakers should be in a better position 10 years from now to make decisions about the desirable evolution of an ombudsman program to meet future needs for advocacy in whatever kind of health care system has emerged in the meantime.

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