adult protective services must be considered in relation to the problems of assuring

appropriate autonomy.

In terms of the principle of beneficence, Aging Network personnel are involved in assessing the values and preferences of older people and making sure that services maximize outcomes that clients think are good, a complicated endeavor in a heterogeneous society. Network personnel, in their advocacy roles, must also look carefully at the extent to which guardianship and conservatorship, adult abuse reporting, agency licensure and a host of other provisions truly serve the interests of the elderly long-term care user.

In terms of the principle of justice, Aging Network personnel are involved in determining what is fair and equitable in the treatment of one older client compared to another; in the treatment of clients vis-a-vis their family members; in the treatment of current clients vis-a-vis clients that might be on the waiting lists for service; and even in the treatment of provider agencies, whose livelihoods to some extent depend on the fair allocations made by case managers. Aging Network personnel have also been giving increasing consideration to fairness and justice in terms of paraprofessional caregiving personnel-largely poor and often minority women who work at low wages and receive inadequate benefits. In part, Network leaders are considering the ultimate fairness of the working conditions and remuneration of this group of workers (who will themselves come into old age without the cushion of savings). Simultaneously, at the level of service delivery, Network leaders are also considering what sorts of working conditions and situations are fair to the person who delivers hand-on care.

I am very pleased, Senator Adams, that the advocacy components of the OAA may be strengthened in the current reauthorization of the Older Americans Act. I see no particular conflict in Aging Network agencies serving as case managers and also fulfilling

an advocacy function. Indeed, it is through their active roles as case managers that

AAAs and network providers have begun to articulate some of the vital ethical issues in long-term care. In Pennsylvania last spring, a group of AAAs sponsored a seminal conference on ethical issues in case management. In Wisconsin last week, the SUA conducted a 2-day training session, cosponsored by our Resource Center, which was attended by 500 people and which was entirely devoted to ethical issues and aging and long-term care. In Minnesota last year, the SUA presided over a process known as SAIL (Seniors Agenda for Independent Living), which gathered multiple inputs of older people and experts to determine ways to enhance the autonomy and dignity of seniors, especially the disabled. To these endeavors, the Aging Network brings an important ingredient that cannot be readily supplied by Centers on Bioethics, typically housed in Health Sciences complexes. This ingredient supplied by the OAA Network is its knowledge of the everyday issues that arise within families and that affect the daily lives of the elderly. In its advocacy, the Aging Network can go way beyond fixation with the important but limited questions of end-of-life treatments to considerations of autonomy, justice, and beneficence in the way ordinary services are allocated and delivered to functionally impaired persons.

It is true that care coordination and case management has within it a tension between advocacy to serve a particular client and resource allocation to serve a community of clients. However, this is not a reason for the Aging Network to avoid and to withdraw from the vital roles of case management. Rather it is a reason for Network personnel to give special attention to the ethical ramifications of its case management work, and to carefully consider all the case management procedures and content from an ethical perspective—including, informed consent, assessment (including assessment of values), care planning, confidentiality, contractual arrangements with agencies, and even the ethics of maintaining waiting lists for assessments. Proper safeguards are needed to avoid conflicts of interest among case managers or development of elaborate

bureaucratic procedures that lose sight of the goal of serving clients. Few AAAs are delivering services directly, so that the potential conflict between AAAs as case managers and as service providers is unlikely to occur. Case management, itself, is not a service. Like I&R, it is an administrative function. In situations where AAAs are contracting both case management and service provision to the same providers, it will be necessary to re-examine that strategy to avoid conflicts of interest, but there seems to me nothing inherent in the OHA to prevent vigorous advocacy and skilled case management to coexist in the Network.

Our Minnesota Resource Center has recently completed interviews with 250 randomly selected publicly subsidized case managers from more than 50 programs in 10 states. All but 25 of the respondents were Aging Network personnel. The respondents identified many ethical issues that face them in their work, and they did so from their traditional perspective as advocates. Had they not been advocates, I doubt that they would have identified the issues so thoroughly and so well. As the one LTC Resource Center with ethics as part of its formal mission, we have been struck by the sensitivity of SUAS and AAAs to ethical themes, and their desire to develop case management approaches that enhance the independence of older people.

Thank you for inviting my testimony and, indirectly, for establishing National Long-Term Care Resource Centers to serve the Aging Network.

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.

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.