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tion to medical complexity, and assistance during periods of transition and crisis.
A delivery system that can respond to those four kinds of needs we believe needs to have at least eight basic components, and I talk about them in some detail. Pre-admission screening allows potential long-term care users to make informed choices. Comprehensive assessment, planning, and management, case management, is what you need to make sure that informal caregivers and others have the access to the care they need when they need it. Single entry systems, like the systems that are emerging in a number of States, make sure that people do not get lost in the cracks, that it is one-stop shopping. Medical linkage that older people have a chance to make seamless transitions between acute and longterm care systems, and that providers on both sides understand what people are doing. Insurance oversight is needed so that the emerging private market for long-term care insurance will have the support needed in terms of the reality that consumers are protected. These systems need to be in place.
Second, to ensure access to quality services, there need to be processes for licensure and certification, processes for contracts or memoranda of understanding that are administered at the local level, and a basic package of services. In fact, Mr. and Mrs. Glakas mentioned that basic package of services. It includes home health services, personal care, homemaker services, adult day care, and assisted transportation. That package of service needs to be available.
We found out, when we looked across the States, that there are only nine States in the United States that come close to having these eight features available statewide. There are many more States where there are communities, big urban centers, demonstration counties where some of these features are in place. On a statewide basis, only nine States come even close. In fact, even among these nine States, we are only talking about five or six of the eight features being in place. Seven of those nine States are States that build on an interaction between the Medicaid 2176 home and community-based care program on the one hand and the aging network. In fact, 20 States, about half of those States that participate in the Medicaid 2176 program, use the aging network in administration, but the strongest States have that feature.
Having the aging network involved does not ensure that 2176 is administered in the context of an adequate infrastructure for longterm care. Eight of the 27 States that have the least well-developed statewide systems also include the aging network as part of its administrative structure for 2176.
I guess what I want to say there is that we have to continue to focus on these issues. The particular criteria for adequacy that I have suggested can be debated. I believe that such discussion is needed in almost every State and that the aging network should have an explicit focus on creating opportunities to reach State and local consensus on what constitutes adequate home and community care options for elders. The focus on advocacy in the Older Americans Act and the aging network suggests that the aging network is the logical vehicle for that consensus-building effort, and that has to occur at the State and local level.
Most aging network leaders seem convinced, however, that system coordination functions and advocacy cannot be performed adequately by agencies that are direct providers of care. That does not mean that the aging network should be excluded from direct care provision, but only that as an agency is functioning as the case manager, it cannot also be the direct care provider. There needs to be a clarity about the separation of roles.
Finally, I want to talk about these two other issues.
There is continuing evidence that elders from racial and ethnic minority groups, elders in less affluent neighborhoods, and elders in rural areas have inadequate access to community long-term care services. Recent studies indicate that these differences are at least partially caused by the orientations of providers to diversity_and their level of understanding of the unique issues in serving these populations. The Administration on Aging and the aging network should continue to have a special advocacy and service delivery focus on those who are least well-served in the current systems.
My second and final point is about the long-term care labor force. Care for the chronically ill and disabled aged requires special interpersonal and technical skills, and yet, nursing home, home care and day care workers receive less adequate benefits than any other job category. The Administration on Aging and the aging network should be directed to continue their attention to the quality of life and work of those who care for the aged as a major quality of care issue.
These are not separate topics. It seems to me that addressing the issues of cultural diversity and labor force are part of how we build an infrastructure and that the role of the aging network needs to be one of either participating or serving as the locus, the center, of discussion for how to build that infrastructure.
[The prepared statement of Dr. Capitman appears in the appendix.]
Senator ADAMS. Thank you very much.
Dr. Capitman, how do we respond to those who indicate that the AAA's that are providing case management to the frail elderly, for example, may be diverted from advocacy for the total older population? In other words, the attack that is often made, is that you cannot both be managing the system for individuals within it and carrying on advocacy for the total system. This speaks to the management question-I guess I am really asking you if we have to divide the role between case management and provision of services? I am not advocating it or opposing it. I am asking.
Dr. CAPITMAN. Ivy own view is that the advocacy and case management roles go hand in hand, but the case management is a very separate function from direct service provision. It is being in the home taking care of somebody. It is different from case management. The AAA's strike me as one of many possible logical places for case management and quality assurance roles and advocacy roles to occur as long as they are not giving direct services.
Senator ADAMS. You would combine case management and advocacy, but direct provision should be separated? I think that is quite logical.
We need more of a bridge with Medicaid to provide more with what we have in terms of resources for more people. And to do
that, as you heard from Senator Rockefeller and from today's witnesses, we are going to have to show our colleagues that we have a management system and an infrastructure that can handle such a massive change in funds and services. Because what we now have just simply wipes people out. When they haven't got any money left, why, then the Federal Government keeps them at a minimal impoverished level, which is gross. It is not a management system. When the money runs out, this happens to you. We are trying to substitute something much better, but I think you are all saying it is complicated.
Dr. KANE. Yes, I do concur with what Dr. Capitman said. The case management is inherently difficult because it has advocacy right in it if it is practiced the way I think it should be and the way Mr. Reed and other people who spoke about it practice it. The advocacy part of case management is doing the skilled assessment in figuring out what it is that people need and what they want, by the way, what they prefer, and then trying to figure out how to get it for them. The gatekeeping aspect is trying to spend the money well across the population.
I think there is a danger if case management is construed as aand I know that it is feasible to construe case management as an optional service under Medicaid, and then people go find their choice of case manager and they have case management divorced from a system of service delivery and allocation. So, the tension between advocacy and gatekeeping resource allocation is inherent in case management.
I think that case management programs around the countryand I agree with Dr. Capitman too that the most impressive ones are the ones that are merging many funds and it is a marriage between the Medicaid program and the aging network and sometimes other organizations. They have learned impressively how to do that.
So, I do not think that the act will be in any danger of losing its advocacy stance. I think that it is very important, as John also emphasized, that if the AAA's are the lead agencies and are contracting out the case management to a provider, then I think it is important that that provider not also be providing the services that are further allocated by the case managers. That is an equity issue for provision in the communities. But I believe we know how and are learning how to handle those.
Senator ADAMS. And a targeting system-this is another key part which you have both mentioned you commented that we miss certain people in the population. It would appear to me with our technology, we should be able to target our senior population a little better. If you wish to comment on that further in written form, we would appreciate it. I don't expect that we will draft a bill that deals with every single operational part. I have been a cabinet officer. That is a very bad practice. Hell is trying to carry out regulations that you have passed as a legislator. [Laughter.]
So, you want to put in the report, however, some direction, and we need the best information we can get from you, on these particular topics that you have just touched on.
Thank you both very much. Your testimony was excellent, and we appreciate it.
The fifth and final panel consists of two national organizations representing the elderly. They will specifically focus on issues of importance to caregivers.
Mrs. Mary Gardiner Jones is an attorney in private practice, and has been a member of the Older Women's League for 10 years and a board member for the past 4 years. She was a full professor of law at the University of Illinois. Most recently she founded a nonprofit consumer agency for senior citizens and has been active on the boards of several elderly advisory groups.
Dr. Linda Redford is an assistant professor in the health services administration program at the University of Kansas and is currently a national Kellogg fellow. Dr. Redford has worked as a community health nurse and has done extensive work in training nurses and social workers in care management. She is currently serving as chairperson of the National Council on Aging's National Institute of Community-based Long-term Care.
I welcome both of you. If we could take just a 1-minute recess, I will be right back.
Senator ADAMS. We are pleased to welcome you. Ms. Jones, why don't you proceed?
STATEMENTS OF MARY GARDINER JONES, CHAIR, PUBLIC
Ms. JONES. Thank you, Senator Adams. It is a pleasure being here.
I represent the Older Women's League, OWL. OWL is a nonprofit organization that addresses the special concerns of midlife and older women, and that is really what we are talking about when we are talking about the aging. As you well know, women outnumber men two to one once they have reached the age of 75. I will not go into the statistics. It is in my formal statement, which I hope will be put into the record.
Senator ADAMS. Without objection, your entire statement will appear in the record as though given in full.
Ms. JONES. All right. Thank you, Mr. Chairman.
I want to emphasize that this is a family issue. This is not just an elderly issue, not only a family issue because we are all aging, but a family issue because it is the family that cares for the aging relatives as they develop chronic and debilitating diseases. So, we have a total family situation and intergenerational problem.
One of the major tragedies that women confront is the fact that a large proportion of women live alone, and so they have to cope with their advancing age by themselves. Seven out of 10 women live without a spouse or are totally alone without any relatives. And 41 percent of the frail elderly also live alone. Ironically, the sick and the elderly are more likely to be living alone than those who are well. Research indicates that nearly one-half of the persons reporting illnesses or disabilities lived alone in contrast to only 26 percent of the well who lived alone.
We also know from medical research that aging and chronic illnesses are not just economic problems for the elderly. It is social isolation, and that also has its health impact. Isolation is a prime cause of both illness and death in the elderly.
And third, a significant portion of midlife and older women have woefully inadequate incomes to see them through their last years. And so, it is an income problem for many women.
AARP's survey of the elderly underscored their virtually unanimous desire to remain in their home as long as possible, but for many, as has been indicated in this testimony this morning, this is not an option. Surveys in Virginia and Minnesota found that 20 to 30 percent of clients in nursing homes could have been cared for in their communities. So, we are not only wasting money by spending nursing home funds on persons who could be cared for in their homes, but we are disserving the elderly who want to stay in their home with the kind of dignity and independence that Mr. Glakas demonstrated this morning.
The third thing that I think needs to be emphasized here—and we have also talked about it is that most of today's caregivers are women, but women are now constantly trying to juggle not only their caregiving responsibilities, but their work place responsibilities as well. One out of five employees over 30 provides care for an elderly person, and we saw Mrs. Glakas today and her struggle to provide for her husband and maintain a full-time job. Some women find they have to quit their jobs. Some women transfer to part-time work. Many pass up promotions in order to keep up with their caregiving responsibilities. And it is an exhausting, emotionally draining work, and frequently caregivers carry that burden alone and isolated without any time for their own companionship, for their own occasional diversions, not to speak of doing their own shopping and the myriad of other activities that caregivers need to do in order to manage their own households. So, the result is that women often lose their health benefits, jeopardize their own health, and earn lower incomes, which translates into lower Social Security and pension benefits when they reach 65.
So, the need for respite care, which is provided under the Older Americans Act, is something that we want to stress to make sure that it is maintained and increased because it is such an essential service for the caregivers.
A New Jersey woman tells of the relief she felt when a health worker came to her home for just 2 hours a day twice a week. "It may not sound like much," she said, "but it's made all the difference. I couldn't lift my mother-in-law to bathe her and care for her terminally ill father as well. I couldn't, I physically couldn't manage any more. It's a Godsend. Without it, I might have had to put her in a nursing home."
And another caregiver wrote us: "When you have someone in your home who needs constant care, there is no day nor night."
So, OWL is here to support the reauthorization of the Older Americans Act and to make sure that the Senate will not give in to any pressures to change the basic philosophy of that act that really is the only service in this country that enables the elderly to live out their lives with some dignity and some independence. It is the only Federal program which provides a broad range of com