Prepared Statement of John A. Capitman

I am pleased to have this chance to testify before the Subcommittee on Aging of the Senate Labor and Human Relations Committee on the current and potential roles of the Older Americans Act and the aging network in home and community based care. Perhaps the greatest contribution of the Act and the network has been fostering an appreciation for the complex challenges we face as a nation committed to caring for our mothers and fathers during the last years of life. A major role for the Older Americans Act remains in building and maintaining state and local chronic care systems that address these challenges.

Along with other researchers at Brandeis, I have examined alternative approaches to reforming the financing and delivery of health and social services for elders. Many of the most promising national initiatives assign long-term care management to states and localities. Further, as one of the Administration on Aging's National Aging Resource Centers on long-term care, we have provided technical assistance to State Units and Area Agencies on Aging. A crucial part of this work has been articulating the minimal features of long-term care infrastructure the array of direct services and the administrative apparatus for coordinating and managing funding sources, linking prospective clients with appropriate care on an ongoing basis, and ensuring the quality and efficiency of service provision.

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I believe ensuring the adequacy of long-term care infrastructure through service delivery and advocacy should be a major aging network goal in fulfilling the Older Americans Act mission. The National Eldercare Campaign recently launched by U.S. Commissioner on Aging, Dr. Joyce Berry highlights

the need for a continued focus on capacity building. Our research indicates that the delivery system for long-term care is inadequate in many states and localities. Nonetheless, the states that have built the strongest delivery systems for long-term care have built a coalition between the aging network and other programs as indicated by active participation by the SUA and/or AAAS in administration of Medicaid 2176 home and community based care programs.

In working with state and local long-term care programs, time and again, we are reminded of the diversity of elders in this country. Elders differ not only from the perspectives of gender, race, ethnicity, geography, and lifestyle, but also in terms of the kinds of assistance they require to retain or regain community residence. It is becoming clear that long-term care systems that address this diversity are most likely to help chronically ill elders avoid unnecessarily painful or costly outcomes. Four major categories of

community-oriented service needs can be identified:

Assistance with household maintenance: Eight percent of community resident elders need help with instrumental activities of daily living but not with personal care. Most of this help is provided by informal caregivers, but those who face poverty or isolation may be particularly at risk of adverse health and social outcomes as a result of unmet needs for help with these activities.

Home and community-based assistance with personal care: About 10% of community resident elders need assistance in performing one or more of the activities of daily living, with 6% requiring help with 2 or more tasks. Individuals with severe cognitive loss may also require human assistance with life-sustaining and personal care activities on a regular basis. Most of this help is provided by informal caregivers.

Skilled attention to medical complexity: While long-term care is usually defined by physical and mental disability, these disabilities are the sequelae of medical conditions that can require ongoing skilled nursing or physical therapy, occupational therapy, or related rehabilitative services. Conservatively, at least one third of those who require assistance with household maintenance or personal care, also require health monitoring. These care needs often extend beyond the limits of current Medicare coverage.

Transition and crisis management: Transitions between service levels and settings for care characterize the long-term care population. Most nursing home and home health admissions are for relatively short-stays following acute care episodes, and physically or mentally disabled elders have far more frequent hospitalizations. Transitions between home, hospital, nursing home, home health, and paraprofessional home care can become crises for patients and families that require professional intervention. Recovery from acute illness and dramatic changes in health status, functioning, and informal care resources can require shortterm use of institutional or community services.

Based on evaluations of demonstrations and studies of how to build clinically responsive, cost-effective, and high quality state programs, the features of long-term care infrastructure that can address this diversity can be described. Eight characteristics of state systems appear to be crucial and are defined in some detail in Figure 1. These infrastructure features can be built through a variety of public and private financing approaches and in many different agency structures. They need to be present in all of the communities of a state, not just major urban centers or demonstration counties, in order to provide elders with equitable access to affordable and high-quality services. Five of these criteria reference the mechanisms for coordination and control of the service system:

Pre-admission screening allows potential long-term care users to make informed choices about the setting and type of care best suited to their service needs while giving payers confidence that less costly options have been considered;

Comprehensive assessment, planning, and management of home and community oriented services help users and their informal caregivers access the care they need when they need it while helping payers coordinate financing streams and provider accountability;

Single entry systems at the state and local level permit users and potential users to gain access to screening and care management rather than being lost in bureaucratic maze, while public and private providers are given a clear basis for accountability;

Medical linkage gives clients the chance to make seamless transitions between acute and long-term care through explicit formal links between health care (hospitals, physicians, and home

health agencies) and home or community care providers, and gives providers full knowledge of client conditions and treatments and services rendered in both sectors of care; and

Insurance oversight including state monitoring of loss ratios and other features of private long-term care insurance protect consumers and encourages private financing by increasing their confidence in available insurance products.

In addition, three infrastructure criteria address the availability of services and the mechanisms for provider accountability. The access and quality assurance components of infrastructure include:

Licensure or certification of agencies or directly hired individuals that provide home and community services can encourage both high quality care and needed growth in the labor market for paraprofessional service;

Contracts or memoranda of understanding between states and local care coordinators, and between these agencies and direct service providers are needed to ensure explcit oversight and sanctions that increase the efficiency of service delivery, and

Services including home health, personal care/homemaker, adult day care, and assisted transportation need to be available so that elders and their families can create care plan options that support continued community living.

A survey of the 1989 long-term care infrastructure in every state and the District of Columbia was completed by our National Aging Resource Center last year. Respondents included representatives of all major health and social service providers in each state with responsibilities for eldercare, including the aging network agencies. Figure 2 summarizes some of the major results from this survey. While there have been some changes in state infrastructure since this work was completed, the results do suggest that the majority of elders in this country cannot rest assured that an adequate long-term care system will be available to them when the need arises. Long-term care capacity building is an unfinished task in this country.

The survey findings do indicate real progress has been made or can be expected some states. At least nine states have developed systems with most

of the coordination and control features, and access to many needed services in most communities. These states do not spend more per capita on all longterm care than do some of the states with the least well-developed systems. Further, many of the states where the long-term care system was rated inadequate have excellent services and administrative structures in major urban areas and demonstration counties but poor services and structures in the remainder of the state. If a constituency for long-term care services can be mobilized in these states through education and advocacy efforts, the direction for further development seems clear.

Figure 3 shows one more important set of findings that are directly related to this hearing and the role of the Older Americans Act in home and community based care. In seven of the nine state with the strongest long-term care systems, the SUA and AAA-system plays an active role in administering the Medicaid 2176 home and community based care waiver program. In these states, Federal, state and sometimes local funding has been channeled through unified delivery system, and the efficiencies gained through this coalition approach have allowed for attention to a broad range of access and quality issues in long-term care. The two exceptions among these most developed states are Maryland and Minnesota. In Minnesota the SUA/AAA network plays major advocacy and service delivery roles for those who do not qualify for Medicaid, while Maryland does not participate in the Medicaid 2176 program, but uses the SUA and AAA system as part of its program built around the Medicaid personal care option and considerable state investment in community care.

Aging network coalitions with Medicaid 2176 do not ensure that an adequate long-term care infrastructure has been created. As Figure 3 shows, 8 of the 27 states that still face significant capacity building challenges have used the SUA and AAA system in the administration of home and community care. Yet even in some of the these states (California, Ohio, and Pennsylvania) the AAA's play a major role in home and community care programs in the selected communities where long-term care capacity has been built.