8
Closing Comments

THE CURRENT VIEW OF THE LONG-TERM CARE OMBUDSMAN PROGRAM

The committee began its report (Chapter 1) with a discussion of the long-term care (LTC) ombudsman program in the context of the overall LTC system in the United States. The chapters that followed (Chapters 2 through 7) provide the committee’s responses to specific aspects of its charge. With the exception of Chapter 7, which discusses the need for and feasibility of expanding the program beyond LTC facilities, the report focuses on topics relevant today, and the committee’s analyses draw heavily on the history of the ombudsman program. Furthermore, the committee’s conclusions and recommendations are made in the context of the current Older Americans Act (OAA) statutes and the aging network that administers programs and services authorized and funded through the act.

As noted in earlier chapters, the LTC environment in which the ombudsman program operates has changed markedly over the past two decades. Changes have occurred also in the OAA and the aging network. One can expect the pace and degree of these modifications to become even greater in the next two decades, although the direction of the evolution remains unknown.

Restructuring will occur also in the LTC ombudsman program itself. As Chapter 7 states, should the LTC ombudsman program (or a somewhat similar ombudsman-like service) expand to provide services to elderly recipients of health care and LTC in settings beyond LTC facilities, further transformation will be needed for the program to operate efficiently and effectively in these new environments.



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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 8 Closing Comments THE CURRENT VIEW OF THE LONG-TERM CARE OMBUDSMAN PROGRAM The committee began its report (Chapter 1) with a discussion of the long-term care (LTC) ombudsman program in the context of the overall LTC system in the United States. The chapters that followed (Chapters 2 through 7) provide the committee’s responses to specific aspects of its charge. With the exception of Chapter 7, which discusses the need for and feasibility of expanding the program beyond LTC facilities, the report focuses on topics relevant today, and the committee’s analyses draw heavily on the history of the ombudsman program. Furthermore, the committee’s conclusions and recommendations are made in the context of the current Older Americans Act (OAA) statutes and the aging network that administers programs and services authorized and funded through the act. As noted in earlier chapters, the LTC environment in which the ombudsman program operates has changed markedly over the past two decades. Changes have occurred also in the OAA and the aging network. One can expect the pace and degree of these modifications to become even greater in the next two decades, although the direction of the evolution remains unknown. Restructuring will occur also in the LTC ombudsman program itself. As Chapter 7 states, should the LTC ombudsman program (or a somewhat similar ombudsman-like service) expand to provide services to elderly recipients of health care and LTC in settings beyond LTC facilities, further transformation will be needed for the program to operate efficiently and effectively in these new environments.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act VISIONS OF THE FUTURE: CHANGES THAT MAY AFFECT THE OMBUDSMAN PROGRAM 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. It also encouraged those who wrote background papers, those who provided oral or written testimony in various forums, and those who replied to the various canvasses to do the same. Consensus on these topics was neither desired nor sought. Based on all this input and the committee’s own deliberations, the committee concluded that rather substantial changes in the very nature of LTC are likely in the next decade; it also concluded that any ombudsman program will face challenges to adapt and be responsive to changing needs. A brief summary of some of the major considerations discussed by the committee follows. Regarding the Configuration of Long Term Care Functional ability, rather than age, may become the most relevant factor in the financing and organization of the LTC financing and service delivery system. If this is the case, then the utility of the continuation of an age-specific ombudsman program is in question. Nevertheless, age-prejudiced views that devalue the worth of treating older people with respect are likely to continue, and older people may still need advocates to ensure that they receive an appropriate share of the LTC resources. Given expected demographic changes, the absolute number of individuals in need of LTC services will increase. This will strain the resources of any LTC ombudsman service and perhaps force new mechanisms to be created and used. People who have medically complex conditions and are dependent on high technology (especially those in vegetative or comatose states with minimal ability to interact with their environment) will become a larger share of the nursing facility population than they are today. Others will be in nursing facilities for short-term rehabilitative or convalescent stays. The former situation will require that any advocate become well versed in legal and moral issues related to end-of-life treatment, surrogacy, and guardianship. The latter may necessitate a mechanism other than routine visitation to ensure that short-stay residents receive sufficient attention from an ombudsman program. A large variety of LTC settings will emerge and, in all likelihood, receive public subsidy. These will include family homes, adult foster homes, and assisted living arrangements. The latter may blur the distinctions between home care and residential “facility” care, especially if benefits for services become portable and are provided by home health agencies or self-employed

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act home health providers. These developments, many of which are already under way, will add enormous complexity to the ombudsman function because of the large number of diverse and often small sites to monitor. If present trends in some Medicaid waiver programs continue and the proposals in the 1993 Health Security Act prevail, then more public subsidies for LTC will be given directly to clients to pay self-employed workers of their choice, and payment of family members who give care will increase. These patterns will make the job of an ombudsman more complex, and they will introduce a need to conceptualize the roles and responsibilities of a family member who is also publicly paid. When these family members are also surrogate decision makers for incompetent clients, new abuses may arise; these in turn will pose additional challenges to the ombudsman program. LTC services and systems will probably employ more strategies to contain costs, such as capitation. Further, under managed acute care (such as already exists in Medicare health maintenance organizations), LTC allocations and individual allocations are more likely to be made by those responsible for managing the resources of comprehensive health care plans. An ombudsman program would necessarily need to be familiar with the incentives that prevail in these markets and the new points of accountability. Such systems are likely to have available elaborate technology to track high-cost consumers, and to predict the likelihood of cost-effective outcomes; ombudsman programs in turn may find a need to work with privacy concerns of consumers. Stricter rules have recently been enacted to prevent divestiture of assets by persons trying to become eligible for Medicaid LTC. Even more stringent rules have been established to require states to make vigorous attempts to recover assets after the deaths of the person receiving LTC and, when applicable, his or her community-dwelling spouse. Public sentiment in some states and among some state legislators favors pursuit of these measures. At a minimum, these issues introduce a significant concern about which vulnerable older people need information—and perhaps vigorous advocacy—to ensure that their rights are not abridged. Assisted suicide and withholding or withdrawing of treatment may be legalized, in response to consumer demands, the “Kevorkian” phenomenon, and policymakers’ desire to curb costs. Older people may be encouraged to enact advance directives for no heroic measures, and these may be filed and followed more rigorously than is now the case. The ombudsman may increasingly become involved at the individual and system level in ensuring that these important choices are not made without information or out of a desperate fear on the part of elderly persons about their likely quality of life.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Regarding the Role of the Ombudsman Given the possible trends just noted, the committee foresees some new emphases that may face an ombudsman program in the future. It also conjectures about some developments that may change the operational model of the ombudsman program. The need for ombudsman-type services in LTC may well increase in the future for two reasons: a newly evolving service system will have the same problems as the current one, and consumers will find the variety of complex policies hard to understand. The ombudsman role may take on the following emphases: helping clients learn about a broad range of rights; helping clients gain access to services or deal with denials of service; and advocating at both the individual and system levels about such issues as advance directives, assisted suicide, managed care, and Medicaid eligibility. Finally, types of personnel and other kinds of support capacities may change over time. Effective advocacy may require closer collaboration and leveraging of resources and skills between the ombudsman program and other consumer advocacy mechanisms, especially those that serve overlapping constituencies such as protection and advocacy systems and legal assistance providers. The ombudsman program may not be able, however, to rely on a supply of volunteer labor to the same extent as it currently does because of the increasing complexity of the advocacy required. The ombudsman program itself may be able to benefit from new information technologies to reach large numbers of people, track cases, and provide accurate information. GOALS REVISITED The committee concluded that the LTC ombudsman program serves a vital public purpose and merits continuation with its present mandate. The committee also foresaw a need for appropriate consumer advocacy mechanisms that go beyond nursing facilities and board and care homes. 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 desired evolution of an ombudsman program to meet future needs for advocacy in the kind of health care system that has emerged. The committee is not suggesting that any

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act of the prognostications in this chapter are a certainty; rather it believes that they provide a starting point for discussion and an example of the types of trends that ombudsman programs should document and report on annually. Thus, the current LTC ombudsman program should enhance its ability to act as an early-warning system to describe how broad social and health policies and programs affect the lives of individuals and to seek improvement on behalf of those individuals.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act This page in the original is blank.