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S. Hrg. 106-379 LONG-TERM CARE AND THE ROLE OF FAMILY CAREGIVERS: A RHODE ISLAND PERSPECTIVE HEARING BEFORE THE SPECIAL COMMITTEE ON AGING UNITED STATES SENATE ONE HUNDRED SIXTH CONGRESS FIRST SESSION CRANSTON, RI OCTOBER 4, 1999 Serial No. 106-16 Printed for the use of the Special Committee on Aging U.S. GOVERNMENT PRINTING OFFICE 62-417 WASHINGTON 2000 : Forsale by theU.S. GovernmentPrinting Office SuperintendentofDocuments, Congressional Sales Office, Washington, DC 20402 ISBN 0-16-060443-5 SPECIAL COMMITTEE ON AGING CHARLES E. GRASSLEY, Iowa, Chairman JAMES M. JEFFORDS, Vermont JOHN B. BREAUX, Louisiana LARRY CRAIG, Idaho HARRY REID, Nevada CONRAD BURNS, Montana HERB KOHL, Wisconsin RICHARD SHELBY, Alabama RUSSELL D. FEINGOLD, Wisconsin RICK SANTORUM, Pennsylvania RON WYDEN, Oregon CHUCK HAGEL, Nebraska JACK REED, Rhode Island SUSAN COLLINS, Maine RICHARD H. BRYAN, Nevada MIKE ENZI, Wyoming EVAN BAYH, Indiana TIM HUTCHINSON, Arkansas BLANCHE L. LINCOLN, Arkansas JIM BUNNING, Kentucky Theodore L. Totman, StaffDirector Michelle PREJEAN, Minority StaffDirector (II) cms Library C2-07-13 7500 Security Sivd* Baltimore,JJIfjteS CONTENTS Page Opening statement of Senator Jack Reed 1 Prepared statement ofSenator John Breaux 6 Panel I Jeanette C. Takamura, Assistant Secretary for Aging, U.S. Department of Health and Human Services 7 Panel II Barbara A. Rayner, director, Rhode Island Department ofElderly Affairs 15 Margaret Maigret, executive director ofLong-Term Care Coordinating Council on behalf of Lieutenant Governor Charles Fogarty, chairman, Long-Term Care Coordinating Council 23 John Paul Marosy, volunteer and board member, National Family Caregivers Association 29 Hon. Robert A. Weygand, a Representative in Congress from the State of Rhode Island 38 Panel III Merilyn deVos, caregiver ofher mother 41 Ethel Marshall, caregiver ofher sister and nephew 47 (HI) LONG-TERM CARE AND THE ROLE OF FAMILY CAREGIVERS: A RHODE ISLAND PERSPEC- TIVE MONDAY, OCTOBER 1999 4, U.S. Senate, Special Committee on Aging, Cranston, RI The committee met, pursuant to notice, at 10:05 a.m., at the Rhode Island Army National Guard Schofield Armory, 705 New London Avenue, Cranston, RI, Senator Jack Reed presiding. OPENING STATEMENT OF SENATOR JACK REED We Senator Reed. are going to begin our hearing of the Senate Special Committee on Aging. I want to first thank Chairman Brad Williams, ranking member, for authorizing this hearing and also for your assistance, not just today, but the great assistance and service to the seniors of America and for your many years during your tenure in the Senate. Fm delighted to be here this morning. I'd first like to thank the Rhode Island Army National Guard for making this facility available to us. General Reggie Centrarchia, our Adjutant General, certainly a talented and dedicated soldier, and he was here already to greet me, but I also want to thank a few other individuals. Com- mand Sergeant Major Jack Ryan. Major Mark Havershaw. Master Sergeant Don Iafrate, who is working the PA system today, which is critical. Sergeant First Class Tom Yuppa. Lieutenant Colonel Tony DeFusco. And also I thank first, she will speak later, Barbara Rayner, for all her assistance and guidance. Kathy MacNamee from the Warwick Senior Services Center. Kathy provided many of the We chairs you're sitting upon. have A. Kathryn Power and Julie Pilozzi from MHRH, and we thank them for the service and support. Claudia Rathbun, who is doing the reporting today. Thanks, Claudia. Also my Seniors Advisory Council, many who are here today. I thank you for your service and also for your help in guid- ing us through this particular hearing. I am delighted that we are here today in my hometown of Cran- ston to conduct this very important hearing about long-term care. We understand it is a critical problem. It is becoming more critical, particularly as our senior population is increasing dramatically. I would like to thank at this juncture in general our distinguished panel, who will shortly join us, and in particular, I'd like to thank Assistant Secretary of Aging Jeanette Takamura, who is with us today. Jeanette is one of the great leaders when it comes (1) 2 to seniors' issues in the United States, and I will introduce her spe- cifically in a moment. Now, we have several objectives at this hearing. First, we want to learn more about the current struggle and challenges that are facing family caregivers in Rhode Island. I want to find out what resources are available and in too many cases not available in health family care. We also want to discuss several Federal initiatives, which are critical to our response at the Federal level, and, in particular, the National Family Caregivers Support Program, which Jeanette will speak about. This was announced by President Clinton in his State of the Union Address. It is a very important program. It is the sub- ject of the Senate legislation. Fm proud to join Senator Ed Bradley and others as a co-sponsor, including the Older Americans Act reauthorization legislation, and so we want to look at these particular Federal initiatives. Finally, I hope that this hearing will increase the importance of planning that we all should recognize. This is particularly appro- priate for my generation, the baby-boomers who are looking ahead, and they have to also start looking ahead to situations where they're going to be living longer, and they have to plan for a longer life. Now, let me just also suggest that on this point, long-term care is a neglected topic in the United States today. The American Health Care Association conducted a survey, and they found that 68 percent of Americans responded that they know they're not financially prepared for the burdens of long-term care in the future. That is a staggering admission, and I think a very accurate one. In fact, the local lack of knowledge on how long to support themselves or finance one's self as one gets older. The aging population could not recognize or identify the fact that Medicaid is one of the principal supporters of long-term care in this country, so we have a lot to do when it comes to education. Now, let me briefly run through some charts we have which will set, I think, the context of the atmosphere for the issues we face today. In 1997, there was a study conducted by the National Alliance for Caregiving and the AARP. Twenty-two million Americans, one in four households, are involved in caring for family members. So this is not an isolated issue of concern. In fact, every family in America is in some respect, I feel, involved with the caregiving for a relative, maybe directly, maybe indirectly. It might be your broth- er who is taking care of your elderly parent, but you are certainly involved, also. Now, we understand how critical this is in the context of seniors. Thirteen percent of the United States population is over 65. Here We in Rhode Island, it is 16 percent. have the third-largest concentration of seniors in the country, and that concentration is going to keep growing, and it is also estimated that there are 12.8 million Americans of all ages who require help to carry out basic needs, so there is 12 million Americans that need some type of daily care. Among those disabled older people who need assistance, 95 percent of them are getting their health care from a family member, only 5 percent are in institutions or have some type of a caregiver that 3 provides support. So the bulk of long-term care is provided by families in this country, and, frankly, that is probably the way it should be. I think families want to stay together, and they want to be able to support their aging parents or their sick or disabled children. That is what families are about, but they also can't do it alone. We have to recognize that. Now, we've got another chart which, I think, Lisa will point out for us or point to, and that chart gives us an idea of the impact of family caregiving. In fact, the family caregivers are probably the unsung heroes in this whole issue of dealing with the problem of caring for Americans. There are more than 20 million caregivers. The vast majority of them are women, daughters, wives, and sisters. Nearly half of all caregivers spend up to 8 hours a week on care, and also, they are spending up to about 20 hours a week, so for many of these individuals, this is a second full-time job. The average caregiver, if you look at the typical caregiver, is a woman about 57, married, working full time, who has been looking after a parent with a chronic condition for a period of 4 to 5 years, so this is not something that is done occasionally, but for many, many people, this is, in fact, their second full-time job. Now, we also have another chart, which we will talk about the types of care that is given. As you would suspect, this chart sug- gests that the bulk of what caregivers are doing are those activities of daily living, transportation, taking people to the medical ap- pointments, grocery shopping, housework, meal preparation, financial management, coordinating outside services, and also, ensuring that medications are properly administered; and as another dimension to this situation, too, it is because it is very difficult to care for someone who has a chronic debilitating disease, particularly it is more difficult if that person is also suffering from some form of dementia, and today we're finding more and more situations in which caregivers ai4 dealing with particularly seniors who have evidence of dementia; and if you look at the additional chart we have, it shows the kind of demands that these particular family members place upon the family, and if you look at the people who say they have much less time for their families if they have a senior or someone who is suffering from dementia, they're forced to give up their time. They themselves experience health problems just trying to cope with it, and this is another dimension, another aspect of the problem that we have to recognize. Now, all of this service comes at a significant cost to individuals. In fact, it has been estimated that caregivers throughout the United States each year provide the equivalent of 45 to $75 billion worth of services, and that is illustrated on the chart that Lisa has just put up. In Rhode Island, we have 98,000 caregivers. On average, they're contributing in terms of the value of their services something on the order of three-quarters of a billion dollars a year in care. Now, if that care was not given by family members, it either would be lacking totally, and this would be a much more mean and brutal society, or it would have to be absorbed somehow by public funds, so we have to recognize the huge contribution, not just in terms of the climate of our society, but also to the bottom line of our economy these caregivers are giving. As you look in con- trast, the average nursing home costs $47 thousand a year. Now, nursing visits and physical therapy visits are $100 an hour for each visit, so this is not only a tremendously vital service on the human level, but a tremendously valuable service on an economic level, and we have to recognize that, too. Now, Jeanette is going to talk about the National Family Care- giver Support Program. I hope we can move aggressively and Con- gress passes on that legislation. Let me just conclude with a final point. Too often this issue of long-term care is characterized as a seniors' issue. It is not a seniors' issue. If you are a person my age, and you have a senior parent who needs care, it is a middle-age issue. If you are a young child who has a disabling condition and need long-term care, it is a pediatric issue. In fact, the statistics bare this out. Of the individ- ual American citizens needing long-term care, children and adults under 65 comprise 5.7 million of these individuals. People over 65, 5.8 million. So this is an issue that affects every family. It affects seniors. It affects middle-age couples trying to cope with this issue. It affects parents trying to deal with the problems of children with disabilities, and so we're going to be listening later, in our third panel, to caregivers who are dealing with this full range of issues. I want to thank again everyone for being here today, and I also particularly want to thank our Assistant Secretary. Before I forget, because sometimes in the rush of events you forget to thank everyone. I also want to have a chance to thank our state officials who have helped us, but let me thank a few other people. Moya Benoit Thompson, who is a respected assistant to the Assistant Secretary, tremendous Mend of aging, tremendous Mend of Rhode Island. In fact, I think she is going to be an honorary citizen she comes up here enough. I want to thank Gardner Young of AARP of Rhode Island. I want to thank Elizabeth Morancy of the Rhode Island Alzheimer's Asso- ciation. She has been very helpful. From the Rhode Island Division of Developmental Disabilities, Lynda Kahn and Maya Colantuono. From the Feinstein Adult Day Care Center, Cynthia Conant-Arp. From the Aging Committee I want to thank Jill Greenlee whose staff, along with Senator Breaux, helped with the graphs that we are talking about. The prepared statement of Senator Reed along with prepared statement of Senator Breaux follows:] Prepared statement of Senator Jack Reed I am delighted to be here this morning. I would like to thank the Rhode Island National Guard Schofield Armory for allowing us to hold our event in their facility. I am very pleased to be able to convene this hearing of the Special Senate Commit- tee on Aging here in my hometown of Cranston to discuss the important issue of long-term care. I believe the issues and challenges associated with long-term care are particularly critical in this state, in light of Rhode Island's fast-growing aging population. I would like to take a moment to thank our distinguished witnesses. As adminis- trators, advocates and caregivers, you have made significant contributions to im- proving access and quality of long-term care. I would particularly like to thank As- sistant Secretary for Aging, Jeanette Takamura, for being here today. I hope this hearing achieves the following three goals: First, to learn more about the current struggles and challenges facing family caregivers in Rhode Island and find out what resources are available to family caregivers. We will also hear how 5 and where available services fall short in meeting the complex array of family caregiver needs. Second, to discuss current federal initiatives aimed at easing the burdens of family caregivers in providing long-term care. In particular, we will focus on a proposal called the National Family Caregiver Support Program. This plan was first unveiled by President Clinton as part of a four-pronged long-term care strategy during bis State of the Union address. Later, the provisions of the plan were introduced as sep- arate legislation in the Senate (Grassley-S. 707) and also incorporated into this year's Older Americans Act reauthorization legislation (Sen. DeWine-S.536). I am proud to be an original cosponsor of S. 707. Last, I hope this hearing will increase awareness about the importance of planning ahead when it comes to one's own long-term care needs. This final point is particularly important for those of us in the *baby boom generation'. Most baby boomers are woefully unprepared to pay for their long-term care needs. Moreover, many baby boomers are simply uninformed about how such care is paid for in retirement. A telephone survey by the American Health Care Association found that 68 percent of respondents, "know they are not financially prepared" to handle anticipated future long term care costs. As for financial assistance, 85 percent of those surveyed could not "name Medicaid as the primary funding source for the vast majority of nursing home residents". Clearly, we can be doing a better job when it comes making informed decisions about future long-term care needs. According to a 1—997 study by the Nation—al Alliance for Caregiving and AARP, 22 million Americans one in four households is involved in caring for a family member, friend or neighbor. This number is expected to increase as people live longer and the baby boom generation ages. Roughly 13 percent of the U.S. population is 65 and older. In Rhode Island, almost 16 percent of the population is age 65 and over. In the United States today, an estimated 12.8 million Americans of all ages re- r're help to carry out basic daily activities such as eating, dressing and bathing, ong those disabled older persons who need assistance to remain independent, we know that 95 percent of the time family and friends provide for their care, either exclusively (65 percent), or through a combination of informal and formal care. Only in a small margin of cases (5 percent) is care provided entirely by a paid caregiver. This interaction between formal and informal caregiving will become increasingly important during the 21st century, when the number ofolder people will increase and the number ofyounger, working age people will decline significantly. Family caregivers are truly unsung heros in this nation. Family caregivers are one of the most effective, and often under appreciated providers of long-term care. Being a family caregiver requires patience, a lot of sacrifices, and tireless hours of work and planning. There are more than 20 million caregivers, the vast majority of them women-daughters, wives, and sisters. Nearly half of all care givers spend up to eight hours a week on care. About one in five spends up to 20 hours, and nearly another fifth are giving constant care to a frail relative, most often a parent. The average care giver is a woman about 57, married, working full-time who has been looking after a parent with a chronic condition for four or five years. In many cases, family caregivers are responsible not only for assisting their aging parents, but must also juggle the challenges of having a family of their own at home to care for. Studies have shown that informal caregivers provide a wide range of assistance. According to the 1997 National Association of Caregivers/AARP survey, the majority of tasks caregivers perform are directly related to essential Activities of Daily Living (ADL)—such as transportation (79 percent), grocery shopping (77 percent), housework (74 percent), meal preparation (60 percent), financial management (56 percent), coordinating outside services (54 percent) and medications (37 percent). Typically, the job of a family caregiver gets harder and more stressful over time, not easier. As the condition of a loved one deteriorates, as is the case with such dev- astating diseases such as Alzheimer's and Parkinson's Disease, the caregiver must bear not only the emotional distress, but must also face the added responsibilities associated with their care. As the following chart indicates, caregivers for dementia patients are more likely to have to make sacrifices and experience problems with their health and employ- ment status than caregivers for non-dementia caregivers. A recent study by the Na- tional Alliance for Caregiving and the Alzheimer's Association revealed that caregivers for dementia patients typically have less time for their families (56 percent vs. 40 percent); are forced to give up hobbies or other activities (53 percent vs. 40 percent); experience more health problems (23 percent vs. 12 percent); have more lost work days (57 percent vs. 47 percent) or are required to give up their jobs entirely (13 percent vs. 11 percent). 6 In addition to the emotional toll ofbeing a family caregiver, there is also a significant cost associated with caring for an elderly or disabled friend or loved one. An Administration on Aging survey found home caregivers provide the equivalent of $45 to $75 billion worth of professional care each year. In Rhode Island, estimates show over 98,000 caregivers in the state provide, on average, the equivalent of three-quarters ofa billion dollars worth ofcare each year. Let's compare the cost ofsome alternative types ofcare: the average nursing home cost is approximately $47,000 a year, while home care visits for nursing or physical therapy may typically cost $100 for each visit. The burdens and responsibilities borne by family caregivers are certainly great. And while caregiver duties and situations may vary greatly, a common dominator for the vast majority of caregivers is the chronic shortage of resources available to assist them in carrying out their duties. I hope Congress will enact the National Family Caregiver Support Program this year, so greater resources can be made available to fulfill the critical shortage in services that plague family caregivers and the people for whom they provide care. Yet, it is important to recognize that long term care is not just about elderly parents and relatives. Today there are almost as many children and adults under 65 in long-term care situations, (5.7 million), as there are people over 65 in long-term care situations, (5.8 million). At this hearing, I will be listening to both children providing care for parents, as well as parents providing care for children. I would again like to say how pleased I am to have to opportunity to host this hearing. And with that I shall conclude my opening remarks and turn it over to our esteemed and knowledgeable panels of witnesses. Thanks again to all of you for at- tending. Prepared statement of Senator John Breaux One of the most important activities of the Special Committee on Aging has been educating the public about the challenges that our nation faces in preparing for the aging ofthe baby boomers. When the 77 million strong baby boom generation begins to retire, not only will our national programs and resources be put to the test, but our families will be as well. Already there are over 22 million families in the United States who provide care for a loved one. Their struggles are real and important. And, as our population grows older, the strains felt by families all across the country will only increase. Caregiving is an issue of particular importance when we think about how to pre- pare for the new millennium. With the average life-span for men and women increasing, many baby boomers will require long term care at some stage in their lives. This means that more seniors than ever before will have long term care needs, and more families will try as best they can to meet those needs. As the Ranking Member of the Aging Committee and as an honorary board member ofthe National Family Caregivers Association, I have learned a great deal about the tremendous strains felt by family caregivers. In March of this year, Senator Grassley and I, along with Senator Reed, introduced legislation that would establish the National Family Caregiver Support Program. This crucial program, designed by President Clinton's administration, would offer assistance to families through the Older Americans Act. Services, support and information would be available to mil- lions offamilies right in their own communities. Implicit in the creation of the National Family Caregiver Support Program is the need to reauthorize the Older Americans Act (OAA). The OAA has not been reau- thorized since 1992. For three years, the issue has been tangled up in debates and differences of opinion. This year we must move forward to reauthorize and modern- ize the OAA. The creation the National Family Caregiver Support Program hinges on reauthorization; and as we will surely learn today through the testimony of our witnesses, this program will serve a crucial role in meeting the needs ofour nation's families and enable our elders to receive the best and most loving care available. I commend Senator Jack Reed for chairing this Aging Committee hearing in his home state ofRhode Island and sharing his knowledge with the people ofthis great state. Senator Reed has been a very dedicated member of the Aging Committee. He has been extremely active in the work of the Committee, whether the issue is geri- atric medical education, Social Security or long-term care. Senator Grassley and I both thank Senator Reed for his commitment to ensuring that the needs of seniors in Rhode Island, and across the entire country, are met. Now, it is my pleasure to introduce Jeanette C. Takamura. Dr. Takamura is the Assistant Secretary for Aging for the Department