[Senate Hearing 107-824] [From the U.S. Government Publishing Office] S. Hrg. 107-824 FACES OF AGING: PERSONAL STRUGGLES TO CONFRONT THE LONG-TERM CARE CRISIS ======================================================================= HEARING before the SPECIAL COMMITTEE ON AGING UNITED STATES SENATE ONE HUNDRED SEVENTH CONGRESS SECOND SESSION __________ WASHINGTON, DC __________ SEPTEMBER 26, 2002 __________ Serial No. 107-37 Printed for the use of the Special Committee on Aging U.S. GOVERNMENT PRINTING OFFICE 83-478 WASHINGTON : 2002 ___________________________________________________________________________ For Sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; (202) 512-1800 Fax: (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001 SPECIAL COMMITTEE ON AGING JOHN B. BREAUX, Louisiana, Chairman HARRY REID, Nevada LARRY CRAIG, Idaho, Ranking Member HERB KOHL, Wisconsin CONRAD BURNS, Montana JAMES M. JEFFORDS, Vermont RICHARD SHELBY, Alabama RUSSELL D. FEINGOLD, Wisconsin RICK SANTORUM, Pennsylvania RON WYDEN, Oregon SUSAN COLLINS, Maine BLANCHE L. LINCOLN, Arkansas MIKE ENZI, Wyoming EVAN BAYH, Indiana TIM HUTCHINSON, Arkansas THOMAS R. CARPER, Delaware JOHN ENSIGN, Nevada DEBBIE STABENOW, Michigan CHUCK HAGEL, Nebraska JEAN CARNAHAN, Missouri GORDON SMITH, Oregon Michelle Easton, Staff Director Lupe Wissel, Ranking Member Staff Director (ii) ? C O N T E N T S ---------- Page Opening Statement of Senator John Breaux......................... 1 Statement of Senator Debbie Stabenow............................. 2 Prepared statement of Senator Larry E. Craig..................... 3 Statement of Senator Ron Wyden................................... 23 Panel of Witnesses Kathryn G. Allen, Director, Health Care, Medicaid, and Private Health Insurance Issues, United States General Accounting Office......................................................... 4 Shannon Broussard, Executive Director, Cajun Area Agency on Aging, Inc., Lafayette, LA..................................... 24 Lisa Yagoda, MSW, LICSW, Senior Staff Associate for Aging, National Association of Social Workers, Washington, DC......... 59 Maj. Kevin Stevenson, Silver Spring, MD.......................... 65 APPENDIX Testimony submitted by Grannie Mae............................... 79 Testimony by the Social Services Block Grant Coalition........... 84 (iii) FACES OF AGING: PERSONAL STRUGGLES TO CONFRONT THE LONG-TERM CARE CRISIS ---------- THURSDAY, SEPTEMBER 26, 2002 U.S. Senate, Special Committee on Aging, Washington, DC. The committee convened, pursuant to notice, at 10:05 a.m., in room SD-628, Dirksen Senate Office Building, Hon. John Breaux (chairman of the committee) presiding. Present: Senators Breaux, Wyden, Lincoln, Stabenow, and Craig. OPENING STATEMENT SENATOR JOHN BREAUX, CHAIRMAN The Chairman. The committee will please come to order. Our committee has the responsibility to look forward and see that our country is prepared to handle the long-term care needs of the pending age wave of some 77 million baby boomers. That is why we have devoted some 13 previous hearings to various aspects of long-term care. Over the course of our hearings, we have learned a great deal of important information from our witnesses, but two themes, I think, have been heard over and over again. The first is that the demand for long-term care services far exceeds the available services that are there. The average person that needs long-term care assistance must depend on family for everyday support to live independently. The second recurring theme is that there is an institutional bias. Most Medicaid dollars are spent on institutional care. It is an entitlement to go into a nursing home, but you need a waiver to stay in your own home. This policy is upside down. Today, we want to explore the personal side of the long- term care issue. We want to put some names and faces on these issues. What is it like to try and navigate through such an inefficient and outdated long-term care system? Will you receive better services if you live in Oregon rather than in Louisiana? Where do you begin your search? Who do you call? What do we need to know? While we cannot overhaul the long-term care system overnight and offer everyone the services that they need, we can offer families some assistance in their search for long- term care. This card lists resources on one side that you can either access with a telephone call or a computer website. The other side lists steps to take and basic questions that you need to ask in order to find care for your loved one. Hopefully, this will be helpful to people who are facing or will soon be facing a long-term care situation in their family. I would like to recognize our good friend and colleague, Senator Stabenow from Michigan, if she has any comments on this issue she would like to make. OPENING STATEMENT OF SENATOR DEBBIE STABENOW Senator Stabenow. Thank you. Good morning, Mr. Chairman, and thank you to those who are sharing information today. This is such a critical issue. I would first ask that my statement be submitted for the record. The Chairman. Without objection, it will be made part of the record. Senator Stabenow. Thank you. We have so many challenges in front of us for families and I think it is important that we focus on how this issue affects patients in their homes, and directly affects their families, and loved ones. While there are many, many challenges, associated with long-term care providers in Michigan are trying to be creative. Michigan office of services to Aging has developed something called miseniors.net, which is a comprehensive portal to long- term care services for seniors. Adult children can research their options, connect with human services workers and so on; and so they are trying to be helpful by bringing together information. But I know that all of us either have faced in our own family or will face the challenges that come with a parent, a spouse, or a loved one who needs some kind of long-term care/ and the challenges of wanting to keep them at home as long as possible. We should receive support to do that. We need a system that can help families, keep loved ones at home but also have out-of-home care available. This is a real challenge and I appreciate your ongoing focus on this. Living longer is a good thing, but the challenge of living longer and what that brings for us will become an even more important issue as we move forward, so thank you, Mr. Chairman. The Chairman. Thank you, Senator. [The prepared statement of Senator Stabenow follows along with a prepared statement of Senator Larry Craig:] Prepared Statement of Senator Debbie Stabenow I want to thank Chairman Breaux and Senator Craig for holding this hearing. Looking at the broad systemic challenges of financing and delivering long-term care is essential to crafting a better approach for America's seniors and disabled citizens. However, too often we get caught up in technical policy details and not pay enough attention to the daily experiences of men and women seeking long-term care for their loved ones. Understanding their plight is also essential for good policy making. As Senators, we have the luxury of information resources. Our staff, the Congressional Research Service, our state agencies and academia all help us understand the complicated web of financing and delivery systems that make up long-term care. Who helps the young mother with a busy home and career navigate the complexities of securing care for her aging parents? What about the elderly man, struggling with his own limitations, who needs help caring for his wife who can no longer feed or clothe herself? Like other states, Michigan's long-term care system is not easy for consumers to steer: there is no single point of entry, no early intervention strategies, few choices for care, and an emphasis on institutionalization over independent living. Phyllis Moga of Grand Rapids, Michigan is all too familiar with the challenges of the system. Her mother suffered from Alzheimer's and when it became clear that she could no longer be left alone, Ms. Moga and her three sisters turned to private in-home aids for help. They knew that their mother would not be eligible for Medicaid, and therefore had no access to public assistance with home care. She did not qualify for the Medicare home health benefit because her condition was not acute. They put ads in the newspaper looking for home health aids to stay with their mother during the day while they could not be there. They hired one after another, and inevitably, the aids would leave their mother alone or not show up at all. Although the private care was inadequate, Ms. Moga and her sisters spent so much money on it that her mother soon qualified for Medicaid. Unfortunately, they heard that it was next to impossible to secure Medicaid assistance for home care because there were only limited slots. So, while her mother could have thrived with some help at home, Ms. Moga and her sisters placed her in a nursing home. They had no help in finding the home as they did not know about the Long-term Care Ombudsman nor the Department of Consumer and Industry Services. They chose the home based on a tour of the facility and the assurance of that it complied with state regulations. Ms. Moga's mother experienced three years of abuse and humiliation at the home, including being found in bed with a broken hip and bruises on her arms. Not knowing where to turn, Ms. Moga became a member of the Family Council, an intermediary between the nursing home administrators and families of those housed there. She fought tirelessly to hold them accountable for the abuse, secure additional staff and promote training within the facility. Three months ago, Ms. Moga's mother was rushed to the hospital by the nursing home suffering from a bowel complication that could have been avoided with proper care. She passed away upon arrival at the emergency room. Shortly before her mother's death, Ms. Moga met someone from Citizens for Better Care, also known as CBC, who attended a meeting of the Family Council. CBC helped her file a complaint with the Michigan Department of Consumer and Industry Affairs. She just recently received a letter saying the state could not determine that the nursing home did anything wrong. Needless to say, Ms. Moga is devastated by what happened to her mother. She believes strongly that had she known more about the system and the resources available to help her, things would have been different. It is not all doom and gloom in Michigan. Long term care providers are being creative in their approaches to fixing the problems. One impressive innovation is the creation of MISeniors.net, which is a comprehensive portal to long-term care for seniors, adult children researching their options and human service workers in the field of aging. It provides a wealth of information and serves as a much needed starting point. I look forward to continuing to tackle the many challenges we face around the country in providing quality care to our seniors. It is very important that we share stories today, like Mrs. Moga's story I have shared with you, to understand how finding long term care solutions is a real, daily struggle for families everywhere. I hope that this hearing helps this committee focus its efforts to help families so that tragedies like the Moga family experience can be prevented in the future. ------ Prepared Statement of Senator Larry Craig Good morning. I would like to thank the Chairman for holding this important hearing today. I would also like to thank all of the witnesses here today for agreeing to testify before this committee about our nation's long-term care system. This hearing is important because we need to focus the nation's attention on long-term care reform. Our long-term care system is lagging behind the need as Americans are living longer. These problems will only become worse as 77 million baby boomers reach retirement age. One of the biggest problems facing our long-term care system is access to information. Services and funding available vary from state to state, making an individuals' search for appropriate care extremely complicated. Many Americans don't know what services are available to them, how to choose the services, how much they cost, and where they can go for financial help. Americans need to be armed with the best information available in order to make important decisions regarding complex long-term care programs. For example, in my state of Idaho, we have one toll free number for seniors. Seniors or their families can call one number and the call is automatically transferred to the Area Agency in their community. This helps to eliminate some of the confusion and gives seniors one place to go for information. Throughout the process of reform, we need to look at devising methods to finance our long-term care system. We should also make it a priority to help Americans plan for their future. For example, the federal government has already started to make long-term care insurance an option for their employees. Information about long-term care insurance and other options to help finance care should be made readily available. All Americans should be informed and should have access to long-term care services. They should also be provided with appropriate information in order to make educated family decisions as to what services are best suited for them. It is very important that we find solutions to the problems plaguing the long-term care system to that we may continue to depend on quality care to help take care of our loved ones. I'd like to thank each of witnesses for being here today and for sharing their insights into this complex problem. I look forward to hearing your testimony. The Chairman. The card that I referred to, of course, in my statement is the blue card that we have up here which the committee has prepared which is sort of a guide for people who are initially approaching the question of accessing long-term care at home. Of course, as I indicated, the first part of the card lists all the free services that are available to help you in finding how to determine what is best in terms of long-term care for your loved ones. Who can you call to get the information that you need? A lot of people simply do not know where to start. Our card kind of gives them a good starting point. A second part of the card, on the back, gives them helpful suggestions about how they should go about making these decisions and also the type of information that you are going to need before you start seeking ways to provide long-term care, so you can have everything in order as you proceed down this somewhat complicated path to finding out what is best for you and your family. We are delighted to have our panel of witnesses this morning. We will start with Ms. Kathy Allen, who is Director of Health Care, Medicaid, and Private Health Insurance Issues over at the General Accounting Office, who works so closely with our committee. I understand she is going to discuss the recent GAO report that has been released specifically for this hearing, in which we have asked them to look at sort of the status of long- term care services in four States, my own State of Louisiana, Kansas, New York, and Oregon. Ms. Allen, we thank you for being with us. You may proceed. STATEMENT OF KATHRYN G. ALLEN, DIRECTOR, HEALTH CARE, MEDICAID, AND PRIVATE HEALTH INSURANCE ISSUES, UNITED STATES GENERAL ACCOUNTING OFFICE Ms. Allen. Thank you, Mr. Chairman, Senator Stabenow. It is a pleasure to be here today as you continue this series of hearings on the public sector role that will help meet the long-term care needs of America's seniors. Long-term care spending, as you noted, is already a substantial part of Federal and State budgets and the impending tidal wave of the baby boom generation is only going to continue to increase demand for these services. Despite the fact that the bulk of current long-term care spending is for institutional care, the greatest interest and demand will undoubtedly be increasingly for in-home and community-based care that will enable individuals in the face of declining health and independence to remain in their homes and communities as long as possible. This morning, I would like to focus my remarks on highlights of the report that we completed at your request, Mr. Chairman, on coverage of long-term care in home and community- based settings. We focused specifically on Medicaid because it is currently the largest payer for long-term care services nationwide. We wanted to give this work a real-life flavor, and so we approached it from the point of view of an elderly person with a very specific set of needs who is seeking care directly from a Medicaid case manager. Now, obviously, there are other avenues that one could pursue for needed services, and I trust that other witnesses today will be able to address some of those other avenues. For our work, however, we developed profiles of two hypothetical elderly persons, an 86-year-old wheelchair-bound woman with debilitating arthritis, and a 70-year-old man with moderate Alzheimer's disease who is recovering from a hip fracture. These individuals would be immediately eligible for nursing home care financed through Medicaid, but they would prefer to remain at home. For each of these two hypothetical persons, we developed three scenarios where they had varying levels of informal care available from their family. We then asked four Medicaid case managers in each of the four States you mentioned to develop care plans for the scenarios. To illustrate our findings across the scenarios, let me focus on just one of them, the 86-year-old woman, who we named Abby, who has physical limitations due to debilitating arthritis and type II diabetes. This is a very typical situation that I am sure many of us can relate to. Abby is wheelchair-bound, has developed a pressure sore as a result, and she has some degree of difficulty with all activities of daily living, including eating, dressing, bathing, using the toilet, and getting in and out of her wheelchair. She needs help to take her medications and to check her glucose levels daily to monitor her diabetes. Her husband, who had been her primary caregiver, has recently died. Abby has now moved in with her daughter, but she herself is overwhelmed by her new caregiving responsibilities for her mother, in addition to the fact that she is caring full-time for her own grandchild. Across the 16 care plans that we identified, all but one of the case managers offered Abby services that would help her stay at home. But the number of hours of in-home care varied considerably across these case managers, ranging from 4.5 hours in one situation to 40 hours in another. To augment this care, several case managers also offered her adult day care, ranging from eight to 24 hours a week. This adult day care would provide her with additional hours of care and would also provide her daughter with some respite. Case managers also offered Abby, to varying degrees, additional services, such as home health care, sometimes financed by Medicaid, sometimes by Medicare; home-delivered meals; assistive devices for the bathtub, such as a grab bar or transfer seat; emergency personal call device; volunteer senior companionship; and family caregiver counseling or respite to help her daughter. Some of these services were covered by Medicaid, while in other cases they were available through other Federal, State, or local programs. The care plans that case managers developed in response to our scenarios reflected what would be offered to individuals assuming no constraints on the number of individuals who they could serve. But in reality, we found that in some cases there were waiting lists, because the services were being provided through Medicaid waivers, that would preclude these people from being able to immediately obtain the home or community-based services paid for by Medicaid. In general, across the various scenarios we explored, we found that case managers developed care plans that relied largely on in-home services. In the few cases where they recommended that Abby or Brian move to a nursing home or other residential care setting, it was almost always because he or she was living alone, had no family or other informal support available, and the case manager was concerned that the individual could not be safe at home. In the majority of cases where in-home care was offered, we found there was considerable variation in the number of hours offered and in the extent to which other locally available non- Medicaid services would be factored into the care plan. In conclusion, Mr. Chairman, we found that the same individual, who is Medicaid-eligible, who is elderly, with a certain set of disabling conditions, care needs, and family support would find very different care plans in terms of the type and volume of services that would be offered. These differences arise, in part, from decisions that States have made in how they design their long-term care programs and the amount of resources they are able to devote to them. But these differences also a rise, very significantly from a lack of consensus as to what services are needed to compensate for disabilities and what balance should exist between publicly available services and that which the family can provide. Mr. Chairman, this concludes my prepared remarks. The Chairman. Thank you very much, Ms. Allen. We will have some questions, of course, for you. [The prepared statement of Ms. Allen follows:] [GRAPHIC] [TIFF OMITTED] 83478.001 [GRAPHIC] [TIFF OMITTED] 83478.002 [GRAPHIC] [TIFF OMITTED] 83478.003 [GRAPHIC] [TIFF OMITTED] 83478.004 [GRAPHIC] [TIFF OMITTED] 83478.005 [GRAPHIC] [TIFF OMITTED] 83478.006 [GRAPHIC] [TIFF OMITTED] 83478.007 [GRAPHIC] [TIFF OMITTED] 83478.008 [GRAPHIC] [TIFF OMITTED] 83478.009 [GRAPHIC] [TIFF OMITTED] 83478.010 [GRAPHIC] [TIFF OMITTED] 83478.011 [GRAPHIC] [TIFF OMITTED] 83478.012 [GRAPHIC] [TIFF OMITTED] 83478.013 [GRAPHIC] [TIFF OMITTED] 83478.014 [GRAPHIC] [TIFF OMITTED] 83478.015 [GRAPHIC] [TIFF OMITTED] 83478.016 The Chairman. We have been joined. I recognize Senator Wyden is here. Do you have a comment or two before we proceed? OPENING STATEMENT OF SENATOR RON WYDEN Senator Wyden. I will be very brief, Mr. Chairman. Thank you, first of all, for all of your leadership. The willingness that you have shown to constantly use this committee to aggressively inquire into these issues that are so important to older people is something that I very much appreciate. It is exactly what this committee ought to be doing. We appreciate your leadership. I would just offer one short word with respect to the topic at hand, the question of home and community-based services for older people. We are so pleased with this report and its account for how Oregon is doing, back in the early 1970's when I was with the Gray Panthers, home and community based care struck us as one of the very best investments that you could possibly make, and that is true now given the demographic tsunami that is coming. I mean, we know in 2010, 2011, there are going to be millions of older people, and back then we tried to say, here is an opportunity to give older people more of what they want, which is to stay in the community, in home and community-based facilities, at a price that is less to the taxpayers than the institutional care. So Oregon began then to pioneer with a special set of waivers, a variety of new approaches. We came to some of the same conclusions, I think, you have, Mr. Chairman, and that is this sort of one-size-fits-all approach does not make sense. I think this hearing gives us an opportunity to examine some important questions, particularly one that in our part of the world is very troubling to people, and that is that, somehow, when you do a good job in this country, when you are innovative, when you hold costs down, when you give good quality, somehow, the Federal Government then turns around and says, well, we are going to pay you less. We are going to give you reduced reimbursement for having done all this heavy lifting and being innovative and exploring new approaches. So we are really pleased about the marks that GAO gave the Oregon program and I am especially grateful for your leadership, Mr. Chairman, and constantly using this committee to be on the cutting edge of gerontology. The Chairman. Thank you very much, Senator, for your comments. Now, from my area in Louisiana, I am very pleased that she was able to get up here. I do not know if you came up yesterday or when, but the weather is kind of wet down there and we are very glad that Shannon Broussard was able to make it up, although 20 inches of rain in New Orleans is just high humidity. [Laughter.] In some States, it is about a 10-year total of rain. We got it in one day. Ms. Broussard is Director of the Cajun Area Agency on Aging in Lafayette, LA, and will talk about their role in assisting older individuals in finding the best long-term care solution. Shannon, welcome to the committee and we are glad to have your input. STATEMENT OF SHANNON BROUSSARD, EXECUTIVE DIRECTOR, CAJUN AREA AGENCY ON AGING, INC., LAFAYETTE, LA Ms. Broussard. Good morning, Chairman Breaux and distinguished members of the Senate Committee on Aging. I appreciate you asking me to come, and I really do want to apologize that Isidore followed us up here. It did shift a little east, so we were able to by way of Houston come in, so it was not too bad. AAAs are the first place most older individuals will go to, or their family members, to find some long-term care services. We were established in 1973 through the Older Americans Act and we provide for a community-based structure of supportive and nutrition services. My AAA, Cajun Area Agency on Aging, serves eight primarily rural parishes in South Louisiana. Based on the unofficial 2000 census, there is approximately 91,000 people over the age of 60 in our eight-parish area. Most served by the Act are the neediest, mostly women, many are rural, and most are poor, and thanks to the recent reauthorization of the Older Americans Act, we now have the National Family Caregiver Support Program, which enables us to meet the needs of some new constituents and they are the caregivers of older individuals, and so we are able to provide them some little bit of care, not as much as they would like, but it does help. Thanks to the advances in health care and medical technology, life expectancy has increased to age 76.9, and with that increase in age, life expectancy, we have increased needs of long-term care services. Currently, two options are available in Louisiana. You have institutional care or you have care provided by a family member. Though many older adults prefer receiving care in their home, Louisiana has an institutional bias. Medicaid is responsible for 80 percent of nursing facility care in Louisiana, and for the most part, government-subsidized care is the only available nursing care for patients. Currently, Louisiana Medicaid programs fund 1,804 in-home and community- based waiver slots. We have 518,000 people over the age of 65 and we have 1,800 waiver slots. What has happened with those waiver slots, we have to be at or below nursing home care, the cost of nursing home care. Cajun Area Agency on Aging provides supportive and nutrition services to approximately 13,500 individuals. These programs have been the salvation for those who, if they would not have these services, would more than likely end up in nursing facilities. Throughout Louisiana, family, friends, and neighbors have been the main source of help for the elderly members of our community. At present, the majority of the requests that Cajun Area Agency receives are for in-home care. That would be sitter services, respite services, or nursing care services, and many of the requests are from individuals who do not qualify for subsidized care and who need a little more than our home- delivered meals and homemaker services to stay at home. As an agency, we do our best to refer services to those individuals so they can remain at home. All are advised to call the Medicaid request for services registry and have their name placed on the waiting list for waiver services, even though they are not financially eligible, because we figure that, in time, by privately paying for home care, they will become Medicaid eligible, and hopefully, by the time they do that, they will be at the top of the list. A comprehensive national policy that shifts the focus and funding of long-term care to community-based services is essential to meet the needs and address the desires of our older population. Independent dignity and choice are values we all possess, especially our older adults. By shifting national policies to home and community-based services, the quality of life for older adults will improve, taxpayers will be spared the cost of premature and expensive institutional care, and our nation's core values will be honored. I do want to say that I do have some recommendations in my written testimony that I hope that you will have a chance to look through. We get in between 10 and 15 calls a month from an older person or a family member looking for some type of care because we do not want to put Mom and Dad in a nursing home. We do our best. We will provide them a home-delivered meal. We will give them some caregiver services. We were able to serve some individuals a good amount of care for the first 6 months of our caregiver program, but now we have had to cut back because everything comes up to how much it costs. Those who did receive caregiver services were very pleased with it, so I think we need to continue and do our best to take care of people at home. The Chairman. Thank you very much, Shannon. We will have some questions with you, and thank you for being up here under difficult circumstances. [The prepared statement of Ms. Broussard follows:] [GRAPHIC] [TIFF OMITTED] 83478.017 [GRAPHIC] [TIFF OMITTED] 83478.018 [GRAPHIC] [TIFF OMITTED] 83478.019 [GRAPHIC] [TIFF OMITTED] 83478.020 [GRAPHIC] [TIFF OMITTED] 83478.021 [GRAPHIC] [TIFF OMITTED] 83478.022 [GRAPHIC] [TIFF OMITTED] 83478.023 [GRAPHIC] [TIFF OMITTED] 83478.024 [GRAPHIC] [TIFF OMITTED] 83478.025 [GRAPHIC] [TIFF OMITTED] 83478.026 [GRAPHIC] [TIFF OMITTED] 83478.027 [GRAPHIC] [TIFF OMITTED] 83478.028 [GRAPHIC] [TIFF OMITTED] 83478.029 [GRAPHIC] [TIFF OMITTED] 83478.030 [GRAPHIC] [TIFF OMITTED] 83478.031 [GRAPHIC] [TIFF OMITTED] 83478.032 [GRAPHIC] [TIFF OMITTED] 83478.033 [GRAPHIC] [TIFF OMITTED] 83478.034 [GRAPHIC] [TIFF OMITTED] 83478.035 [GRAPHIC] [TIFF OMITTED] 83478.036 [GRAPHIC] [TIFF OMITTED] 83478.037 [GRAPHIC] [TIFF OMITTED] 83478.038 [GRAPHIC] [TIFF OMITTED] 83478.039 [GRAPHIC] [TIFF OMITTED] 83478.040 [GRAPHIC] [TIFF OMITTED] 83478.041 [GRAPHIC] [TIFF OMITTED] 83478.042 [GRAPHIC] [TIFF OMITTED] 83478.043 [GRAPHIC] [TIFF OMITTED] 83478.044 [GRAPHIC] [TIFF OMITTED] 83478.045 [GRAPHIC] [TIFF OMITTED] 83478.046 [GRAPHIC] [TIFF OMITTED] 83478.047 [GRAPHIC] [TIFF OMITTED] 83478.048 [GRAPHIC] [TIFF OMITTED] 83478.049 The Chairman. Lisa Yagoda is the Senior Staff Associate for Aging at the National Association of Social Workers here in Washington. I think you are going to talk about barriers to long-term care and the role of caseworkers in helping them find those services, so we are glad to have you here. STATEMENT OF LISA YAGODA, MSW, LICSW, SENIOR STAFF ASSOCIATE FOR AGING, NATIONAL ASSOCIATION OF SOCIAL WORKERS, WASHINGTON, DC Ms. Yagoda. Thank you. Good morning. On behalf of NASW's nearly 150,000 members, I thank Chairman Breaux, Senator Stabenow, Senator Wyden, and their fellow Senators on the committee for holding this hearing. NASW appreciates the opportunity to highlight some of the issues professional social workers are faced with when educating clients about long-term care services that are available in the community. The combination of physiological, psychological, and social changes that accompany aging can have a significant impact on the quality of life for seniors, often necessitating a need for supportive services and the skills of a professional social worker. Social workers are prepared for professional practice through a combination of education and field experience. Professional social workers are licensed or certified and adhere to a strict code of ethics. In our work with older Americans, professional social workers practice in a wide variety of settings and at a variety of levels. Social workers provide services to active and healthy older people living in the community, as well as those who reside in institutions. In the long-term care arena, social work services are provided not only to the older adults, but also to family members and caregivers. The ultimate goal of social work services for older individuals is to reinforce their existing strengths and capacities while maximizing independence and well being. When informing and educating the public about long-term care services, we as policymakers and service providers are faced with the formidable task of how to best meet the needs of all care recipients while at the same time providing a streamlined system of access, outreach, and service delivery. This is a particularly difficult task for social workers who are on the front lines mainly because current entitlement programs are not designed to customize services and meet the wide range of presenting problems that we typically encounter when working with older adults. When we consider how best to inform consumers about the array of long-term care options available in the community, we must first acknowledge some inherent challenges, which include determining who the client is, what the most appropriate services are, who is eligible for services, who can access services, and what are the barriers to care. You may be surprised to learn that a major challenge is defining the client or consumer. Sometimes an older person seeks services directly, but oftentimes it is not the older adult but a family member, trusted friend, clergy member, neighbor, or other service provider who is seeking services on the senior's behalf. When this happens, competing or conflicting needs may exist, such as the concern for safety versus the desire for independence. There are many reasons as to why these barriers to service may exist. For example, a care recipient may not consent to receiving the services or does not recognize there is a problem in the first place. This may be due to a mental illness, dementia, or perhaps just a fear of loss of control. In situations where the care recipient does agree to receiving services, the services that are most appropriate to meet their needs might be cost prohibitive or simply just might not exist. The way care recipients perceive services is also a contributing factor in that means-tested services often are viewed negatively by older adults and their families and accepting these services may be seen as a personal failure. Another challenge is a lack of a central, uniform point of entry into home and community-based services. Older adults or family members may not know there is a problem, but they just do not know where to begin their quest for seeking services. When designing policies and programs to educate, support, and serve seniors, it is important to consider the goals of the program. Aging is a process. As such, education about aging needs to be interspersed throughout the entire lifespan. As an aging society, we need to be more aware of what lies ahead of all of us and what resources are available. Outreach and education should take place at all the various points of entry. Information also should be available in places in the community where older Americans and their caregiver would most likely gain access. Support and information must be available in different venues, accessible to both seniors and their caregivers. Though a wide array of services do exist in the community to maintain and improve the quality of life for older Americans, it is important for this committee and for all of us to continue to seek strategies for improvement. NASW appreciates the opportunity to come before you this morning and we look forward to continuing to work with this committee as it pursues its mission. The Chairman. Ms. Yagoda, thank you so very much for being with us. [The prepared statement of Ms. Yagoda follows:] [GRAPHIC] [TIFF OMITTED] 83478.050 [GRAPHIC] [TIFF OMITTED] 83478.051 [GRAPHIC] [TIFF OMITTED] 83478.052 [GRAPHIC] [TIFF OMITTED] 83478.053 The Chairman. Our final witness will be Major Kevin Stevenson, who is from up here in Maryland. We have got some traffic problems out there, but he is here and he is on time and he is here. His parents happen to live in Napoleonville, LA. His mother is 73, and his father is 76 years of age. We have heard their story before, but we just asked Major Stevenson to share his thoughts with us on the problems associated with trying to find the right type of care for his parents. He is a typical example of children who live hundreds and maybe thousands of miles away from their parents and the challenges associated with providing long distance help. Major Stevenson. STATEMENT OF MAJ. KEVIN STEVENSON, SILVER SPRING, MD Maj. Stevenson. Chairman Breaux, Senator Wyden, I appreciate the opportunity to actually come here today and provide testimony to the committee. First of all, I would like to say I am also an Army social worker officer and I have been in the Army now as a social worker for 11 years. The services that have been spoken of in regards to what social workers do provide in the statement made by the NASW, we provide services to the elderly, also, be it retirees as well as their family members. We provide discharge planning services as well as medical and counseling services to them. So I do support what NASW is saying in regards to what we do and the challenges we have as social workers. Again, I thank you for the opportunity to be able to provide testimony on behalf of my mother and father because they are not alone. Other citizens throughout the country request in-home long-term care assistance. My father has been ill since 1995. My mother began requesting in-home services as of that year for my father. She began her request in seeking services first with home health care, the Council on Aging, and the Veterans' Administration. The Council on Aging were able to provide daily lunch meals for my father. Home health care provided short-term services for periods of time. My father has been bedridden now since May 1998. He has been hospitalized at least three times in the last years, and in May 2001 was his last admittance to the hospital. He was admitted for gall bladder surgery. After his surgery, full recovery was questionable, but I thank God that he survived. After each hospitalization stay, he was eligible for home health care services at a minimum of 2 to 6 weeks. We are told on each occasion, because care for him is so well provided by the family, and he has no bedsores or any other sores, no extra care is needed, and home health care services are discontinued and stopped. Caring for my father has not been easy. My mother has hired an in-home nurse aide to come every morning to actually bathe my father. Recently, the Family Caregiver's Program granted services to my mother and father, as of February 2002, and it ended in June 2002. Then the services were renewed in July 2002 and are now extended to June 2003. This service only provides 9 hours a month. My mother also gets help from her youngest brother and his wife, who live on the other side of Highway 1 in Napoleonville, LA. If it was not for my mother's brother, family friends, church members, and other relatives, I do not think my mother would be able to do it by herself. When I go home on leave, my main reason for being there is actually to support my mother and father. I would really like to have the opportunity to visit other friends and family, but I am there for her and providing respite care so that she may rest and do other things that are needed. I would like to be able to at this opportunity to provide you a picture of what a day in my mother's life is like. At 5 a.m. in the morning, she wakes up, and about 5:30 each morning, 6:30 here, as I travel to work, I give her a call to find out how she is doing. At 7 a.m. in the morning, she gives my father his medicine and she changes his feeding tube. At 7:30 a.m., the nurse's aide comes in and bathes him. Now, I would like you to be able to understand that my father weighs 195 pounds, and as a person lays in the bed and they are bedridden, that is basically dead weight and it is not easy for the nurse's aide or my mother to actually bathe him, but they have been doing that. At 3 p.m. in the afternoon, my mother tests his blood sugar again and gives him his medicine. At 6 p.m., he gets another bath, and the bath that is given to him at that time is provided by the other caregiver. She provides a bath to him on 3 days a week and my mother actually bathes him in the evening 4 days a week. At 10 p.m. in the evening, she tests his blood sugar again, and then he gets medicine for the last time in the evening. This is just one story of many other Americans that are wanting to be able to provide care in-home to their family members. I support this committee's efforts and I will continue to support my family in providing in-home services. I would just like to also say in conclusion, we have to be aware, and I am clearly aware, not only as a social work officer in the United States Army but also as a citizen of the United States, that when I get older, I would like to be able to have in-home care as an adult myself, being able to be provided by my family and friends. Thank you. The Chairman. Thank you very much, Major. I thank all of the witnesses for being with us. Ms. Allen, let me start with you. Your survey has indicated that, unlike Medicare, for instance, where there is pretty much a standard national policy for all 50 States, Medicaid is different, with Medicare, all seniors, 40 million of them, approximately, have the same standard of care but when we talk about Medicaid providing help and assistance and cooperation with the States, we are finding that in the four States you looked at, which I think is probably true for all States, you have 50 different sets of rules and standards about what can be done and what cannot be done in dealing with long-term care, which Medicaid becomes one of the principal providers for. I think that in the States that you looked at the variation was pretty dramatic. Do you agree that it was dramatic or do the data compare with a little bit of tinkering around the edges? Ms. Allen. There were some commonalities, but there also was extreme variation across the States. But what was also interesting, sometimes it was not just a matter of that State's policies. Sometimes we saw even in the same community that two case managers seeing similar people would prescribe very different approaches to care. So the variation also is very dependent on who the individual case manager is and what he or she thinks is necessary to meet that set of needs. It gets right back to the point that Major Stevenson was making, that people have a lot of different needs, and often, there has been an ethic in our country that families help take care of their own families. About two-thirds of all people who need long-term care in the community are supported by their families. But as Major Stevenson pointed out, family caregivers need respite. They need help, and we saw that play out through our case managers. Again, two case managers in the very same community could offer very different services depending on what he or she thought would be necessary to best serve that family's needs. The Chairman. Do you think that is because of a lack of information and knowledge among the case workers as to what is available? Is that part of it? I take it that it is due more in part because of what is available within a State. I think the testimony from Ms. Broussard was that 80 percent of the care expenditures in my State of Louisiana are covered under Medicaid. Medicaid is responsible for 80 percent of the nursing facility care in our State. It seems like there is a huge bias for institutional care in nursing homes in Louisiana. So why do you think the variation exists? Is there not enough flexibility? Talk about Louisiana for a bit as to what you found with regard to how the money is being spent and what type of waivers we have down there. Ms. Allen. All right. In Louisiana, as you pointed out, the vast majority of the long-term care spending is going to nursing home care. Over 90 percent of the long-term care dollars for the elderly, the Medicaid dollars, are being spent on institutional care. The Chairman. Over 90 percent? Ms. Allen. Ninety-three percent, by our calculations. Louisiana does have two waivers that help meet the needs of some individuals, as Ms. Broussard pointed out. But the numbers that are served are rather limited. I think she mentioned that there are about 1,800 slots with one waiver. There are about 5,000 people on the waiting list, and as she pointed out, one of the explanations is they encourage people to go on that waiting list even if they do not qualify financially at this point in time, because over time, they will. Another waiver that Louisiana has deals with adult day health care, which is a little different from some other States. In some other States there are different models of adult day care. Some focus on social services. The one in Louisiana, it is our understanding, has more of an emphasis on health care services. So they are trying to meet a higher level need. For that waiver, our understanding is about 500 people are being served and about 200 people are on the waiting list. The one other thing that I would mention as far as Louisiana is concerned is we found that there is a cap on the amount of money that a case manager can spend per individual per day. That cap was about $35. That $35 will not go very far in terms of paying a caregiver to come into the community. That cap is a factor of the limited number of slots that have been funded as well as how much money has been allocated for that, and that is in stark contrast with some other States we have looked at where there are not similar caps. The Chairman. Do you have any thoughts about what would happen if Congress decided to move toward not requiring the waivers? I mean, this whole process where the State has to come to Washington and ask to do something that is in their best interest and they probably know better than we do, to just have something that would not require the waiver process? Rather, just make services available in to the States as long as they are meeting certain standards with what they do? Ms. Allen. Mr. Chairman, there is a provision in the Medicaid program now that would lean in that direction, and would not require a waiver. There are certain things in the Medicaid program that are mandatory services. Nursing facility care is one of those. Home health care is one of those. Those mandatory services, though, are often contingent on the income eligibility level that a State sets. So if the income eligibility level is set very low, it is possible that not very many people would qualify. But there is another option within the Medicaid program, what is called optional services, and personal care is one of those optional services already set up in statute that a State can elect to fund and cover. If they elect that option, it means that those services will be available to everyone across the State with no limits on the number of people served except, again, that they can set the income eligibility levels which will somewhat control the thresholds. The Chairman. Would that cover home health care as we know the services now? Ms. Allen. Well, home health care is a mandatory service, which will be more of a skilled service. Personal care is one thing that others have talked about this morning. That would be the hands-on bathing, feeding, some of the other things that some would say are more custodial care. Now, the issue, though, is that more than half of the States have picked up the personal care option, but it is still not a large part of the funding. I think it comes down, again, to where do States choose to put their dollars and how are they trying to constrain costs overall. The Chairman. Ms. Broussard, you mention in your testimony that Medicaid is responsible for 80 percent of the nursing facility care, and then you heard Ms. Allen say that, what, 93 percent of the, what, State money that is being spent---- Ms. Allen. Medicaid long-term care spending is on nursing homes. The Chairman. Why do you think it is so high? It is probably the highest in the nation, I would imagine. What is happening down there? I mean, why have we not looked at other options more aggressively? I have always told the nursing homes they ought to be in the business of assisted living and in other businesses that provide this care. We started off sort of like we did with Medicare in 1965 with a bias toward hospitalization, but things have changed. This is not 1965 and there are other alternatives. I have always told the nursing home industry that they are missing, just from a pure economic standpoint, a good avenue of increasing business by moving into other types of care; assisted living care, long-term care in community-based settings, home health care. Ninety-three percent is just an incredible amount. Can you comment on why? Ms. Broussard. If I had that answer, we could probably provide more services to individuals. I know that we started the Medicaid waiver in 1993 in Louisiana and we started out with 500 slots, and we have had a battle in the State legislature to get it up to--we are now funding 1,200 slots and there are 525 of the ADHC, the adult day health care waiver. It has been an uphill battle. We currently provide case management, our agency, for the waiver program. The Chairman. What is the argument used against it? I mean, why is it a battle? When someone disagrees with that, what do they say? Ms. Broussard. We have a very strong nursing home lobby in Louisiana and you are taking money out of the nursing homes to put it in in-home care. The argument is that it costs more for care for individuals at home because we do have to--and it has increased to $55 a day, that we have gotten an increase in care. But then they throw in, well, but they have to go to the doctor more often. When you are in a nursing home, the doctor comes to them. So we have all these issues that we continually battle. I think taking care of someone at home is definitely where we need to be. I have been doing these programs for 20 years and I can say that when I started 20 years ago, there has not been much change in what we as agencies do with the Older Americans Act. We have gotten a few new programs, the Caregiver Program. We were just totally excited for that because we can start to get into that arena of providing care for caregivers. But we still cannot get the medical end to people who want to remain at home. We can provide the supportive services, we can provide the nutrition services, but there are some services that agencies such as ourselves cannot, and I wish I had the answer as to why. The Chairman. I think you gave the answer. Ms. Broussard. Well, maybe---- The Chairman. You gave it very well. Ms. Broussard. Oops. [Laughter.] The Chairman. I think that people are missing the boat. I do not want to be repetitious, but in order to make the point, I will be. I think that institutional caregivers are missing the boat economically and not moving out into other areas of home health care or helping in assisted living facilities. I mean, that is where the future is. Providing solely one type of institutional care is where the past is. Just like Medicare in 1965 which was created and is outdated today needs to be reformed and brought into the 21st century, so does the whole concept of how we treat our aging population. The population today does not want to be in an institutional 24-hour-a-day, 7-day-a-week care facility if it is not necessary. Now, for some, it is necessary, and thank goodness they are there. But for many, they are there only because of a bias on behalf of States. Many are there because it is the only thing that is available. That is the real challenge and what we have been trying to emphasize with this committee. Senator Wyden. Senator Wyden. Thank you, Mr. Chairman. All of you have been very helpful. Let me begin, if I might, with you, Ms. Allen. Do the residents of the State of New York, a State that spends nearly three times the national average per capita, do they get better care than those in Oregon, which is now spending two-thirds of the national average? Ms. Allen. Senator, I am not sure I can respond to that question. We did not look at quality as a part of this study. I will say, however, where we have another study in process, we are looking at exactly that question, the quality of care that is provided in home and community-based settings. We do know in the course of the work that we are doing there, which builds on work that we did a few years ago for this committee also on assisted living that included the State of Oregon as well, that there are concerns about the quality of care in home and community-based settings. What we find increasingly is that many of the individuals had the same care needs that you will find in a nursing facility. I think Major Stevenson described some of those today, a lot of needs. The services in these settings are often less regulated than they are in nursing homes. So we hope to be reporting on that very shortly. But in the course of this study, Senator, we did not look comparatively at the quality of care. We can say, though, that we saw some differences in terms of the number of hours of care. For example, in the State of New York, as well as Oregon, there was a strong bias, I should say, to try to provide around-the-clock care to an individual in their home if that was what was needed. In those situations, though, we found that one of the constraints was finding the home care workers or the aides who would be willing to provide that care, particularly in the night shift. So the supply of workers is sometimes a constraint in being able to meet those needs. Senator Wyden. I was trying to keep from pinning you down on the quality question because I know that your study was not to be determinative on the quality issue, but at least at this point, you think that one of the drivers behind these variations involves the number of hours somebody gets care, access to trained workers. That would be at least your judgment up to this point, prior to your report on quality? Ms. Allen. Yes. Senator Wyden. All right. Given, Ms. Allen, this huge variance in care plans, what are your recommendations for the committee to make sure that consumers and families can find the best treatment for them? Ms. Allen. I think the best thing to do is work through, to begin with, with the local AAAs because I think that they are a wonderful catalyst for trying to pull together the services that are available. Also, to the extent that people are aware of what they may qualify for is helpful. One example is Medicare home health. To be candid, we were a little surprised that in some situations in some States, even in the same community, that a case worker may build the Medicare home health into the care plan, saying we will help you get this or make sure you talk to the physician and have this prescribed. In some cases, this was a way to conserve Medicaid dollars. Medicaid is supposed to be the payer of last resort, so they would say, ``we are going to help you get Medicare home health so that we can provide you with other things that would not qualify for Medicare.'' But in some cases, the case worker did not do that. So in that respect, to the extent that an individual is aware of what they qualify for, and again, I think that going through social workers and AAA they can get assistance in knowing what they do qualify for. Senator Wyden. That sounds pretty troubling. Are case workers trying to save money? Are case workers unaware of this extra opportunity to serve older people? What was your sense behind that? Ms. Allen. Well, in some situations, I will say that we were in somewhat of an artificial situation in terms of our hypothetical individuals. We conducted our work over the telephone and clearly identified that we were the General Accounting Office and what we were doing. It is our understanding, though, that most of the time there would be a face-to-face interview between the case workers and the individual, and perhaps with that face-to-face, that there would be more exploration of what is available and what is not. Sometimes we would prompt the case worker, once she had finished talking through the services available, well, is there anything else available, for example, Medicare, and she would say, oh, yes. Oh, yes. I simply forgot to mention that, but obviously, of course, that is available. Senator Wyden. How often did that happen? Ms. Allen. For Abby, the 86-year old woman with debilitating arthritis, case managers referred her to Medicare and/or Medicaid home health services in 14 of the 16 care plans developed for each of the three scenarios we presented. In the other 2 care plans, home health care was not recommended or, in two scenarios, a care plan recommended a residential care setting rather than in-home care. For Brian, the 70-year-old man with Alzheimer's disease, about half (7 or 8) of the care plans recommended Medicare or Medicaid home health in the two scenarios where Brian lived with his wife. The other half did not include home health care services. In the scenario where Brian lived alone, only 3 case managers would recommend that Brian remain in his home. Of these 3 case managers, 1 recommended Medicaid home health services and the other 2 recommended round-the-clock in-home care but did not mention home health care. Senator Wyden. The coverage, as you know, in some places is so limited that if on top of that we have case workers who are not being aggressive and proactive in terms of telling patients and families what their options are, that is sort of a double- whammy on the country's older people. So I would really be interested in knowing how often that happens. One last question for you, Ms. Allen. Did you find that State mandated cost restrictions were influencing health care plan recommendations? Ms. Allen. There was a sensitivity to resource constraints in two of the States that we went to. In the States of Louisiana and Kansas, there was an understanding that there were limits overall on resources and so there were attempts to maximize the number of hours possible, but recognizing there were constraints. That was less true in Oregon and New York. There seemed to be many more resources available, partly because there was more being done under the Medicaid State plan itself with no limits on the number of people served. Now, there were some considerations in terms of budget neutrality, that the waiver services could not exceed the cost of what a nursing home would be, so that was somewhat of a constraint. But we did see some differences across the States in terms of what they could answer. Senator Wyden. Ms. Broussard, I have always felt that the key to making the aging network work and maximize its potential is all of you the Area Agencies on Aging. I mean, you all are the front lines and it is an extraordinary service you provide. What is the service that older people now want the most when they come to the AAAs? Ms. Broussard. Most of them--our meals program is a pretty infamous program. They always say, well, I need a meal-on- wheel, so we send them meals-on-wheels. But that is generally one of the things. They can get a hot meal at lunch. We also, we are starting to get now more and more, I want to stay home but I need someone to help me stay there. So now, we are getting into that. Where we used to be able to provide homemaker services, where someone would go in and do some light housekeeping and they would also get a home-delivered meal. So now we are finding that those are still key services, but we are going into the caregiver realm, now that family members are calling and wanting care for their family. Senator Wyden. What kind of waiting list do you have for your key services? Ms. Broussard. It depends on the parish, county. The Chairman. Parish. [Laughter.] Ms. Broussard. Parish, yes. We have in our urban parish, which is Lafayette Parish, approximately 300 to 400 people on the waiting list for home-delivered meals. In some of our smaller parishes, you are looking at 150 or better. Over the past 10 years, we have had a decline in the number of services that we could provide simply because the population is growing but the dollars are remaining the same. So we have had to do some things at our agency so that we could at least continue to maintain a level where we are comfortable that we are still serving a good bit of our population and that is by going into sliding scales for paying for our meals program, where every 5 days we could pay a different price for a meal based on the number of meals we serve. So we have had to do some creative things at our end to keep the services up, and---- Senator Wyden. Have you seen in the last 6, 8 months with some of the economic concerns that people are volunteering less when they come to the programs? My sense is that a lot of the older people, the combination of the prescription drug increases and maybe they would have a small CD or something as a little bit of a cushion and now they are not getting much on that, that we are really seeing a drop-off in the capability of people to put that voluntary contribution in. Literally, since I was Director of the Gray Panthers, that was something we always watched because it was a measure of how older people were doing and out-of-pocket medical costs and the like. Have you all seen that drop-off in terms of what people are giving on the voluntary side? Ms. Broussard. We have seen a drop-off, mainly with our home-bound individuals. The thing with an individual going to a site to eat, their peers are there so they will tell them, oh, you passed up the box, so they will go back in and they will drop a dollar or a couple of coins into the box. So peer pressure in a group setting, it can kind of--it has leveled off, but our home-delivered individuals, our home-bound people, we have seen a slight drop-off. But, you know, we have always pushed and told them that if you can give, then we can serve your neighbor. So we have tried to keep the education level up on what we do with the contributions and we have also gone to families, too. We will send them the same letter that we may send to one of our clients so that the family knows that if you can help your mother volunteer or what have you, then maybe we can serve someone else. But there has been a slight increase, plus in Louisiana with the gambling industry, we find that a lot of our seniors do like to go, so---- [Laughter.] It is an outing for them. They play the nickel machine, but it does have an effect on what they can give. But we are not an entitlement program. The Older Americans Act is not an entitlement program, so it does not matter if--you could be sitting next to someone who is a millionaire and it does not matter in our programs, which is good with Older Americans Act programs. We treat everybody the same. You just have to be 60. Senator Wyden. My time is up. Major Stevenson, as you know, the aging network of services and home and community-based services is kind of a crazy quilt and it is hard to follow. The fact that you are tracking and navigating with your folks' system is exactly what we are hoping our generation will do, so three cheers to you. I know the navigation of the system is difficult but it is important that you be here to tell us your story. Ms. Yagoda, we have worked with your organization many times over the years and I just thank all of you for being such good advocates for seniors. Thank you, Mr. Chairman. The Chairman. Senator Lincoln. Senator Lincoln. Mr. Chairman, first, thank you for your leadership on all of these aging issues. Chairman Breaux has just been an incredible force in helping us in the Congress focus on the issues of our aging parents and our aging populations and constituencies we serve and we really appreciate the work. It is now, I think, 14 hearings in the Aging Committee that we have had on this subject. I am very happy to learn once again from the chairman and the ranking member, that October 1 through 7 is Long-Term Care Awareness Week, which gives us all an extra opportunity to bring about a better awareness of the need to take care of our aging parents and our aging population. We thank you, Mr. Chairman, for all that you do. I apologize for being late and not getting to hear your testimonies, but I am delighted to have an opportunity to ask you just a few questions. One of my concerns regarding long- term care is some of the Medicaid bias toward institutional care, and I know you have talked a little bit about that. Most people needing long-term care do prefer to stay in their homes or their community settings. With aging parents myself, I know that my parents were childhood sweethearts. My mother is going to do everything she possibly can to keep my father in our home, and if it is to the detriment of herself, she is going to do that. It does not matter how much my sisters, brother and I try to tell her that she has to look after herself, she has to take care of herself, what if she falls, it does not matter. She is going to do everything she possibly can to keep him out of an institutional setting as long as she possibly can. That is why it is also so important, not only for those that we are caring for but those who are caregivers, who put an undue hardship on themselves in order to make sure that they are doing everything they possibly can for their loved ones, and so we do want to check on doing what we can. Arkansas has been successful in getting some Medicaid waivers to allow the State to pay for long-term services in- home and some of the community-based settings for people who would otherwise need institutional care, and Arkansas has used this waiver to set up their Elder Choice program, which has been successful. But the waiver option applies only to people who would otherwise be institutionalized, and you have mentioned that. What about the people who are not at the point of needing institutional care but still require long-term services and would like to remain in their home and their community? We want to be able to work hard to try and solve that question for our constituency. We are also concerned about the options that are available to the middle class. Obviously, Medicaid through its waivers and institutional opportunities provides long-term care opportunity for the neediest, but there are those that are just over the line in terms of Medicare and we want to make sure that we keep focused on that. Ms. Allen, in your GAO study, you only include those four States, and I know you have talked about that. Based on your experience and research, and you may have already touched on this, would you say that poor or rural States like Arkansas have fewer services available? Is there a rural nature to this problem? I look at Kentucky, Louisiana, New York, and Oregon. Out of that study, do you have any sense for what rural States go through, more so than others? Ms. Allen. We did not look specifically at rural versus non-rural States, but what we did do in the course of our study was to make sure that we selected two different communities in each state, a large and a small, in order to look, and I would say that our findings are consistent across those both large cities and smaller cities. In each State, we chose a city with fewer than 15,000 people, and we did not discern really notable differences in terms of the types of care plans that were being prescribed. So I would not say that the approach that we took, we necessarily saw that. Senator Lincoln. Maybe sometimes it is just that services are more difficult to provide in rural areas because you have got, obviously, an enormous transportation barrier and challenge that you have got to face. I am curious to know, other countries and what long-term services other countries offer. Is there anything that you can expand on that they are doing, suggestions or ideas or things that you see in other countries that could be adapted to better use here? Ms. Allen. I wish I could comment on that today, but I am afraid that I am not in a position to do that. Senator Lincoln. OK. Ms. Broussard, just in watching in my own family and understanding that women tend to live longer than men and usually end up being a caregiver, in most instances they often end up living alone at the end of their lives because they have been a caregiver, are there any efforts underway to see that older women get priority in some of these services? Do you see that at all? Ms. Broussard. Gender has no factor in any---- Senator Lincoln. Pardon me? Ms. Broussard. Gender does not have a factor that I am aware of. Senator Lincoln. But clearly, do you see---- Ms. Broussard. Oh, certainly. The majority of the people that we serve end up being people who live alone, they are mostly women, they are very rural, and they are mostly poor. Senator Lincoln. Mostly poor? Ms. Broussard. Mostly poor, yes, which the older men tend to like, too, so--three-to-one, so---- Senator Lincoln. They like those odds. [Laughter.] Of the services that the Cajun AAA provides, which one has the largest impact on rural residents, do you think? Ms. Broussard. The largest impact would be our in-home services, and that is our home-delivered meals and our homemaking services, as well as some transportation services, because a lot of an older person's problems stem from not being able to get from point A to point B. Senator Lincoln. Right. Ms. Broussard. So we do have a number of our parishes that are big transportation providers. They also get 5310 money, which is through the Department of Transportation, and 5311 funds. So we try to get them out instead of keeping them at home, because that way they can visit with people, and when the mind continues to be used, you continue to go a little bit further. But our home-delivered meals, meals-on-wheels, is still one of our big services. Senator Lincoln. Well, you are exactly right. The stimulation is important. My husband's grandmother is going to be 105 on Monday, and if the car is started, she is in it. She is ready to go. She wants to be out there with people and doing all kinds of things. You mentioned when Senator Wyden asked about a waiting list, you mentioned 300 or so. Do you find that you have faith- based organizations locally that try to pick up the slack of those kind of situations when you do have waiting lists, or do your faith-based or your nonprofit groups participate in really making that happen? Ms. Broussard. Well, we have in our Lafayette Parish, which is an urban parish, we do have churches that volunteer to help us deliver some of our meals, so it helps us in the administrative end by having volunteer organizations helping us with the delivery. As for providing food sources and what have you, we have had some of--we have St. Joseph's Diner. We have a few diners that will kick in around holiday times. But we are mainly the program, you know, our meals-on-wheels program and our congregate meals program. Senator Lincoln. Well, I remember I participated in one of our meal delivery program one time and I realized, like you said, the home care needs, because every home I went into, they wanted to visit. They wanted to sit down and talk. But they would say, well, can you change that light bulb for me before you leave, and so I got my youth group at church and we spent one Sunday a month going into some of the shut-ins from the church and doing just some of those little tasks. So it is important to know that everybody can work together. Major Stevenson, I want to give you accolades and compliments. As a child of aging parents, I am back in Arkansas a good bit, but I am here an awful lot and it is very difficult from those distances to really be able to feel comfortable in what you have been able to do. So I, like the chairman and Senator Wyden, want to compliment you on the fact that you are navigating these systems and really looking for the ways that you can find different agencies and other groups that can be helpful to your parents in their aging years. It is definitely challenging, and as a child living in a different part of the country most of the time, I certainly can identify with you. Just a couple last questions. Ms. Yagoda, just to touch a little bit about those that are just above the poverty level, what services really are available for them, those that are just above the poverty level that do not qualify for Medicaid? Ms. Yagoda. It depends on the jurisdiction where they live. It depends on what their needs are. A lot of the services that are available are the services that Ms. Broussard talked about through the AAAs, the home-delivered meals, the chore aides---- Senator Lincoln. They are not dependent on income? Ms. Yagoda. That is right. Senator Lincoln. But is it mostly all available through the AAA? Ms. Yagoda. The non-health-related services? Senator Lincoln. Yes. Ms. Yagoda. The more social services? Yes. Then the more medically related services would probably be available through Medicare. Senator Lincoln. I am just wondering, I hear you all talk about Medicare home health. There must be more available through Medicare home health than I am aware of. Not a lot? Ms. Yagoda. Again, it depends. Senator Lincoln. Is that right? Ms. Yagoda. It depends on the need and the diagnosis and the skill level. Senator Lincoln. What do you see as the most fundamental need for that near-poverty group? Ms. Yagoda. There are so many. I think part of it is what we are discussing today. Where do they start to get access, education on what is available. Senator Lincoln. Right. Ms. Yagoda. I think that knowing how--to have an advocate to know how to navigate the system. A lot of people do not know where to start. They do not know where to begin. They do not know, should they call Medicare first? Should they call the AAA first? Should they go through their doctor? That is a biggie for the---- Senator Lincoln. Where to start? Ms. Yagoda [continuing]. For the care recipients and the caregivers, where to start. Senator Lincoln. Education is clearly important the Robert Wood Johnson Foundation did several studies in Arkansas and they found that there were actually more services than people realized. The biggest key was for people to be educated on what was actually available to them and how do we get that information out, how do we educate them to let them know what is available, how they access it, and where they continue to go to--as they age even more, where do they go to get more of those services. We thank you all very much for being here. I apologize for being late, but we have a wonderful chairman and he keeps on top of this issue and makes sure that we are all focused, so thank you very much. The Chairman. Thank you, Senator. I think that with regard to what you are talking about, Blanche, this little card we developed really helps. We are going to have it on our Aging Committee website. It really tries to give people first information a first stop for services, and provides information about who to call, and list some of the places they can call to find out what is available. On the back of the card we try to give guidance as to the steps to take in order to prepare for the search and what information a consumer should know about themselves or their loved ones. Hopefully, this card will be somewhat helpful to the people out there. Senator Lincoln. Does Social Security put anything like this in their mailings that go out regularly? The Chairman. I do not know the answer to that question. I have not seen anything that specifically deals with something like this. I think that, mostly, those mailings provide mostly just information on Social Security, how much the taxes are and how much the individuals owes. Maybe I am wrong, but it would not be a bad idea to work with the Social Security Administration because they contact every single person in the country, I would like them to mail this out with every Social Security mailing. Senator Lincoln. Ms. Broussard. Ms. Broussard. I would say that we get a lot of referrals from Social Security, that Social Security told me to call you. So they obviously, in our area, they will instruct them to come to us. Senator Lincoln. It looks like it would be worth it to put one of these in their Social Security mailing. The Chairman. Put them in with every check that everybody gets in the mail. If Social Security would have something like this, it would be, I think, very helpful. We will have to take that up. Senator Lincoln. Even if they just did it once or twice a year. The Chairman. Yes. They do not have to do it every time. It will be the Lincoln proposal. I think it is very good. [Laughter.] Major, thank you very much. Any suggestions for what you think the committee can do? I mean, you have always been very helpful talking to us. Maj. Stevenson. I would just like to be able to say this. In regards to what services are available or who knows where to begin, a lot of times, it is starting where the client is, meaning allowing them to tell you what services they would like to have, and then at that time, making sure they can make those services available. We talk about, you know, the fact that it is not gender specific or anything like that. Most times, it is looking at the income. I can tell you from my parents and from my mother in regards to respite care, wanting to have that service available, a big issue is the medication. When you look at the income that they are receiving, the things that they are having to pay for and just being able to make ends meet each month, it is being crunched up by the medication. Her just wanting--it is not a whole lot, the support with the medication, the support with having someone come in and at least bathe him for a little while. What is very interesting to me, and I am sure other elderly, is the fact that they would say to my mother, and I am sure others, we could pay, just as others have been saying here today, we can pay for you to go into the nursing home. However, to continue the in-home care, we cannot do that, and the question is, well, why? Well, this is just the way it is. I can tell you, I think it would be more cost effective with the services that have been provided to my mother in regards to coming in and at least providing the care of bathing him, someone being there at least for a couple of hours for her to go and pay bills and things of that nature, would be a big start. But yet, it is very ironic that they would say, let us put him in institutional care and we cannot provide the small time that is being asked for. So if we could do that, that would be an issue. The Chairman. That is a very helpful suggestion and very well said. I would like to thank all of you for being here, particularly Shannon for coming up from Louisiana, and all of you for making a real contribution here. That will conclude our hearing today. [Whereupon, at 11:16 a.m., the committee was adjourned.] A P P E N D I X ---------- [GRAPHIC] [TIFF OMITTED] 83478.054 [GRAPHIC] [TIFF OMITTED] 83478.055 [GRAPHIC] [TIFF OMITTED] 83478.056 [GRAPHIC] [TIFF OMITTED] 83478.057 [GRAPHIC] [TIFF OMITTED] 83478.058 [GRAPHIC] [TIFF OMITTED] 83478.059 [GRAPHIC] [TIFF OMITTED] 83478.060 [GRAPHIC] [TIFF OMITTED] 83478.061 [GRAPHIC] [TIFF OMITTED] 83478.062 [GRAPHIC] [TIFF OMITTED] 83478.063 [GRAPHIC] [TIFF OMITTED] 83478.064 [GRAPHIC] [TIFF OMITTED] 83478.065 -