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SECTION II STUDY CONCEPT Projected growth in long-term care needs will require a sizable expansion of our capacity to provide long-term care services and that expansion, in turn, will require substantially increased financing. After reviewing evidence about current financing patterns and future needs, the committee believes that simply increasing the dollar flow into existing financing mechanisms may not be the optimal national strategy for the future. Study Focus Three fundamental problems characterize current long-term care arrangements: inadequate range of services and choice of setting poor quality of much of the care available fundamentally flawed financing arrangements that place about one-half of the entire elderly population, including many not previously below "poverty" classification thresholds, at risk of financial impoverishment within a year of the onset of a severely disabling chronic condition. Most studies of long-term care have focused primarily on trying to explicate or solve these problems. A number of valuable projects have examined issues such as improving the quality of care in nursing homes and developing programs to provide services to the functionally impaired in community settings.14 On the financing side, efforts are now under way to examine the financial feasibility of private long-term care insurance and various strategies within existing programs, particularly Medicaid, to encourage the substitution, where appropriate, of less costly community services for institutional care. Components of an Optimal Long-Term Care System The Institute's study proposes to build on these efforts but from a different perspective. The focus of the proposed study will be the

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identification of public policy options and private initiatives that, in combination, come closest to achieving an optimal balance of the following desirable outcomes: broader accessibility to needed care of acceptable quality wider personal choice of services and settings for care protection against personal financial catastrophe for individuals and families ~ greater cost-effectiveness of services. A major task in the proposed study will be to evaluate potential policy interventions for achieving an acceptable balance between these sometimes conflicting goals. The optimal long-term care system, however, varies somewhat according to the perspectives of individuals needing care, their families, and the larger society. The planning committee identified the following goals as important from three alternative perspectives: From the perspective of the functionally dependent individual, the long-term care system should: - maximize functional independence maximize the opportunity for rehabilitation maximize personal choice of services and settings - ensure dependable and acceptable levels of quality simplify procedures for obtaining services ~ provide protection against impoverishment due to illness. From the perspective of families, the long-term care system should: - protect the family against catastrophic financial resource depletion; and - protect the family against catastrophic personal resource depletion that seriously compromises the independence and quality of life of family members. From the perspective of the larger society, the long-term care system should: - be affordable to the country - be equitable - sustain appropriate informal care-giving by family members and community volunteers - be perceived as satisfactory to most Americans. Achieving Desirable Outcomes Risk-pooling strategies hold considerable promise for achieving an optimal balance among these desirable features of a long-term care system, especially when combined with effective gatekeeping mechanisms to match appropriate services with individuals' needs. -12-

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The Institute's proposed study will build on past work on pooled-risk approaches to examine how such an approach could be structured not only to provide a more rational source of financing but also to create incentives to ensure improvement in the availability, appropriateness, and quality of long-term care services. Thus, although a major focus of the proposed study will be the development of viable financing strategies using a pooled-risk approach, the ultimate objective is to structure the financing to create a better system of long-term care. Financial considerations have unduly influenced the development of services for chronically impaired persons; we propose to use the goals and objectives of an effective system of long-term care to determine the design of the financing system. Study Scope The proposed study is broad in scope and should not be constrained by current policies or programs. The policy options to be considered will range from incremental changes in current programs to comprehensive restructuring. The study will consider in detail how new policies relate to the current system, and how a transition could be effectively staged. Pooled-risk approaches might, for example, require a transition period with partial benefits to current elderly and full benefits phased in for future cohorts. Study Population The planning committee gave serious consideration to the design of a study that would encompass the special service needs of the entire long-term care population of all ages. Arguments in favor of such an approach include the fact that the disabled of all ages currently compete for the same resources--particularly Medicaid' public housing assistance, and income supports such as SSI. Many of the service programs effective in meeting the needs of the functionally impaired elderly are applicable to younger populations as well. The committee was concerned about the possibility that policies designed primarily to serve the elderly might prejudice the options available to other groups. However, the concerns of a study of younger disabled populations would be quite different than for the elderly. Basic education would have to assume primary importance in the development of a system of care for disabled children and young adults. Likewise, for disabled adults under 65 years of age, vocational rehabilitation, employment, and income supports would have to receive considerable attention. In addition, some of the service delivery mechanisms that perform well for subgroups of the nonelderly disabled, such as halfway houses for the chronically mentally ill and intermediate care facilities for the mentally retarded (ICF/MR), may not be directly relevant to improved long-term care for the elderly. -13-

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After careful consideration, the planning committee concluded that encompassing the special service needs of the functionally impaired under age 65 within the scope of this study would increase its size and complexity to the extent that it would be difficult to manage effectively, and it would not be feasible to complete the study within a reasonable time period. Thus, the study will focus on the elderly and their families but will do so recognizing the 1 Norm rare nomad of under 65 age groups as well. The committee strongly recommends that a separate follow-on study be conducted on the special long-term care service needs of nonelderly populations. The likelihood that at least 40 percent of the nation's long-term care population in the year 2000 will be under age 65 makes it imperative that public policies for those populations be formulated and evaluated as soon as possible, and preferably in parallel with this study of the elderly. - ~ ~ ~ ~ O ~ ~, Time Frame The study will focus both on the near-term future from 1990 to the year 2000, and on a longer-range period to the year 2020. The committee believes that today's most critical issues, such as those centering on cost-containment and alternative financing mechanisms, will persist into the l990s, notwithstanding the possibility of public or private sector actions to resolve them before then. Thus, although the study will focus intently on the near future, it will not ignore the need to develop a system of care appropriate for meeting the nation's needs well into the next century. -14-