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Prepared Statement of Dr. Linda Redford
Mr. Chairman and distinguished members of the Subcommittee, I am Linda Redford, Assistant Professor in the Health Services Program at the University of Kansas in Lawrence. I am also Chair of the National Institute on Community-based Long-term Care (NICLC), a constituent unit of the National Council on the Aging. I am here today representing the National Council on the Aging.
NCOA is pleased to join you in considering changes in the Older Americans Act. The National Council on Aging conducts research and demonstration projects, provides training and technical assistance, disseminates information and develops program standards such as our recently published standards for care management, for senior centers, and adult day care centers.
The community-based long-term care system is part of a comprehensive continuum of services which include health, social, and supportive services from transportation to long-term institutional care. The National Institute on Community-based Long-term Care was founded as a constituent unit within NCOA in 1983. NICLC provides a locus for the exchange of knowledge and expertise relating to the research, development, financing, delivery and management of community-based long-term care.
In addition to NICLC, NCOA encompasses eight other constituent units and member organizations that provide services to millions of Americans:
o The National Association of Older Worker Employment
o The National Center on Rural Aging (NCRA)
o The National Institute on Adult Day Care (NIAD)
o The National Institute of Senior Centers (NISC)
o The National Institute of Senior Housing (NISH)
o The National Voluntary Organizations for Independent
Living for the Aging (NVOILA)
o The Health Promotion Institute (HPI)
o The National Interfaith Coalition on Aging (NICA)
Mr. Chairman, I have attached, to the full text of my testimony, the NCOA position statement on the reauthorization of the Older Americans Act and those of some of our constituent units.
LONG-TERM CARE EXPANSION UNDER THE OLDER AMERICANS ACT
For more than two decades, the Older Americans Act has provided an array of advocacy, nutrition, and social services under Title III such as congregate and home-delivered meals, transportation, information and referral, visiting and telephone reassurance, homemaker, ombudsman, and legal services.
In more recent years, this service spectrum has been expanded to include the following among others:
o in-home services for the frail elderly:
o additional assistance to those with special needs;
o home health aide services;
o supportive services for families of Alzheimer's Disease patients; and
o coordination of services for those with disabilities and in need of community-based long-term care.
Yet the OAA has never received adequate funding for basic social services. The addition of long-term care services, also with inadequate funding levels, has resulted in the basic services of the OAA being eroded further. In short, the OAA has become overprogrammed and underfunded.
State units, area agencies on aging, and services providers, faced with depleted funding and an expanding population of older persons, have increasingly directed services to those who are most frail and vulnerable for institutionalization. It is understandable why this has occurred. The needs of the frail and disabled in our society, particularly those with limited economic and social resources, are immediate and heart-rendering. Attempts to respond to this need by adding long-term care services in the OAA is admirable, but this solution is inadequate and inappropriate.
NCOA supports the continuation of long-term care services currently provided under the Older American's Act, but we do not advocate a significant expansion of these services nor do we support the inclusion of additional in-home and other long-term care services under this Act.
Mr. Chairman, it is time this country develops a long-term care policy and implements a system of care which serves ali Americans in need of long-term care, regardless of age or type of disability. Such a system must be adequately funded and operate under national standards to ensure that the needs of people can be met at the most effective and efficient level and by appropriately trained persons. This system and the programs within it must be designed to integrate and have the capability to address both the social and health service needs of the frail and disabled in our population.
CARE MANAGEMENT STANDARDS
Care or case management is one of the critical long-term care services added to the laundry list of OAA programs in the last decade. Care management is needed to ensure that long-term care services are provided in the most comprehensive, coordinated, acceptable, equitable, and cost-efficient approach possible. It has been argued that this is not a direct service and, therefore, can be appropriately provided by OAA funded programs.
Whether care management is a direct or indirect service is really not the major issue. Not all, or even most, persons with long-term care needs require the highly intense and costly services of care management. Those persons who require it generally have very serious and complex health and social problems. Given the nature, intensity, and the frequent instability of their situations, they should have available to them and their families highly educated and experienced professionals who can assist them in clearly delineating and addressing their health, social, financial, informational and all · other needs important to the maintenance of their optimal wellbeing.
Care management should not, therefore, be delegated to agencies or organizations based on a funding source. The selection of individuals and organizations to provide care management should be based on very specific and stringent standards.
NCOA urges the development of national standards for both the managers and providers of long-term care. Based on these standards, states should then have the option of selecting or developing the organizational entities most appropriate for carrying out these functions. NCOA recommends, as examples, the inclusion of the following criteria in national standards.
Agencies or organizations providing care management:
(1) should provide an interdisciplinary focus and have on staff, at a minimum, health and social services professionals to serve the clients;
(2) should not provide direct services, unless no other alternatives are available. When services are provided, frequent and stringent external audit procedures must be in place.
Agencies/organizations responsible for care management or for the direct provision of long-term care services:
(1) must have the administrative experience and capability to manage large and possibly diverse funding streams;
(2) must have concise and comprehensive written and
(3) must have mechanisms in place for professional, legal and ethical accountability to their clients and to the public.
Although NCOA does not believe the Older Americans Act is the appropriate place for the financing and provision of longterm care, programs under the OAA can and must play an active role in advocating for and facilitating the development of a long-term care system in this country. In states where agencies funded under the OAA meet the national standards for managers or providers of long-term care, it is possible they may be selected to carry out this function.
However, their role should not be at the sacrifice of health promotion and wellness activities nor through a reduction in educational and advocacy activities which protect the rights and promote the well-being of all segments of older Americans.
THE OLDER AMERICANS ACT: APPROPRIATE ROLES
There are, in most states, other organizational structures which have a vast experience in long-term care. In contrast, OAA programs are often the only ones in states and communities focusing on health promotion and screening, health maintenance, education, and advocacy related to older Americans.
A recent study by NCOA found that health promotion is one of the primary services offered by most senior centers. You will be interested to know, Mr. Chairman, that one senior center initiating mammography screening identified breast cancer in three of the first eleven women screened. Subsequent screenings have found one in nine women screened at the center, about the national average, had breast cancer and were able to receive early treatment. These services, duplicated throughout the country, are not only enhancing life but saving lives.
In addition, the OAA has played a substantial role in adovcating for and protecting the rights of older persons. Ombudsman, elder abuse prevention, and legal assistance programs protect legal rights of older persons and assist them through the mazes of our bureaucracy. At a time when we have increasing numbers of cognitively and physically impaired older persons who cannot speak for themselves, these programs need greater resources and attention.
Yet, there are other pivotal areas in which OAA programs can play a role in long-term care, as well as improve the lives of all sectors of older Americans and their families.
Educational programs for older persons and their families are vital. Information empowers persons to better understand and articulate their needs, as well as more effectively tap their own resources and those of their informal and formal care networks.
Caregivers need education and support from many
perspectives. Among other things, they need to know the latest in caregiving approaches, how and when to call on others for assistance, and what assistance should be available for them. These types of information are needed by family caregivers and by those who provide formal care services.
Inadequate or inappropriate care from lack of knowledge and "burn-out" from exhaustive and onerous tasks is not the province of any select group of caregivers. It occurs among family, friends, and formal providers alike. Today, families are often over-burdened and the need for care by older persons far outstrips our trained manpower in the formal care sector. programs need to provide or faciliate educational programs, support groups, and advocacy activities aimed at alleviating this situation..
Older Americans Act programs have long collected needs data on the older population. Unfortunately, this has not been done in the most scientific or useful manner. Systematic and longitudinal information on the characteristics, desires, and needs of our older population at the state and local levels is desperately needed.
This lack of information has been a major hinderance to the implementation of services which most appropriately address longterm care needs of people at state and local levels, as well as a roadblock to development of both public and private long-term care financing strategies. Given today's technology, it is impractical to attempt to develop and target services based on sparse national data sets and anecdotal stories. The Older Americans Act is a very reasonable conduit to facilitate state and local data gathering activities. To that end, the data collection system of the Administration on Aging must be revitalized to overcome the weaknesses in data collection on the national, state, and local levels.
Information and Referral
Information and referral has been an activity of OAA programs since their inception. Today this activity needs to be expanded and made more comprehensive and effective in addressing the needs of older persons and those who may coordinate or
provide their care. Older persons, their families, the coordinators and the providers of care need continually updated, thorough, and accurate information on local providers of services and availability of specific services. The information and referral programs of area agencies on aging should be upgraded and maintained in computerized data systems to meet this need. Attempts to provide and coordinate services for all older persons, especially those needing immediate and extensive services will be less effective and far more costly, if such information systems are not in place, and regularly updated.
Is the Older American's Act the appropriate mechanism for long-term care coordination and service provision? Probably not. Persons requiring intensive and extensive long-term care services have multiple and complex health and social needs. The provision and coordination of services to these people requires the integration of knowledge and skills from the health, medical, and social service disciplines, as well as experience in managing large and complex funding sources.
To attempt to address serious and chronic health problems under the Older Americans Act--while sacrificing those programs which focus on reducing or delaying functional disability in older persons in the process--may well be a serious mistake, resulting in greater burdens of frailty in subsequent years.
I would like to conclude, Mr. Chairman and members of the Subcommittee, with a plea that you give serious consideration to the proper placement of long-term care services during your deliberations.