THE WHITE HOUSE Office of the Press Secretary _____________________________________________________________ For Immediate Release April 11, 1994 REMARKS BY THE FIRST LADY AT ALZHEIMERS ASSOCIATION HUMANITARIAN AWARD PRESENTATION MRS. CLINTON: Thank you so much for the invitation to be here today and thank you, Stewart, for your introduction and for all the work you do, and thanks, too, Shelley, for making this presentation. It is particularly apt because as I travel around the country working on behalf of health care reform, I collect images, faces, of the people whom I meet and the stories that I hear. So now, I will have his map of our country with hundreds of faces, most of whom I will never meet personally, some of whom I will perhaps know about through the work that you do or the stories that you tell, but all of whom will serve to remind and spur me on as we go forward in the next months about what it is we are really trying to do. This is a debate, yes, about health care reform, but it is about people. It is about the people whose faces are on that map and it is about the people whose lives we will touch and it's about all of us in this room. I was in Syracuse last week at Syracuse University with Senator Moynihan to speak about health care and as I finished all of my events there, which included a rather remarkable display of computer technology and how it will link doctors and hospitals one with the other so that people will be able to get services at distances from the major medical centers, and after I had spoken there in the chapel to a very enthusiastic crowd of young people, I went outside where there were about 2,000 or 3,000 more who couldn't get into the chapel and I said a few words to them and then, as is my custom, I walked down to shake their hands as I moved toward my car to leave. Many of them were very excited about the event and were saying all kinds of supportive and very personally rewarding things. I got to one young woman who grabbed my hand and looked at me and said, my father has Alzheimers. Please help my father. Her words stopped all of the young people right around her and they listened as she told me what has been the story of her father and her family since he was diagnosed with Alzheimers and how little support and little help they really had. This is not a new story to you who are members of this Association and support its work. It was a new story for many of the other college students who stood around this young girl. It struck me that she was displaying the kind of courage that you display in your work on behalf of Alzheimers and also your daily caring for the people you love, but she was also an advocate. She was educating those around her as she spoke with me. So the work that you do is taking many forms and touching people who may never join the Association, whom you may never encounter, but who, on a daily basis, are pushing your agenda and our joint agenda for health care reform forward. I want to thank all of you and the Association for your invaluable, courageous work. I want to thank you for your support for research into effective treatment, prevention, and yes, some day, a cure for Alzheimers. I want to thank you for the support that you give to caregivers, for your leadership in helping to develop innovative approaches to long-term care, and for the strong and loud voices of the purple people leading the fight or comprehensive health care reform. Tomorrow Hazel and Angie Chapman who are here on the stage with us will be testifying before the Senate Special Committee on Aging. They will be telling their story and it's a story that will be familiar to many of you but needs to be told over and over and over again. They will be talking about Hazel's husband and Angie's father, Tom, who at age 53 has late stage Alzheimer's Disease. Hazel and Angie are the primary caregivers. Because of Tom's young age, he does not qualify for any Older Americans Act services in his community. The only help they get is from the local Alzheimer's Association Chapter, which has a small program funded by the State of Virginia that provides adult day care two days a week. Tom's disease is progressing so rapidly that Hazel fears he will have to go into a nursing home in a year or less unless she is able to get more help for him at home or in the community. She has no idea how she would pay for the nursing home care. The family's sole support is social security disability and $85 a month from Tom's government pension. He is ineligible for his full pension until the age of 59. She uses that to cover a portion of the $122 a month health insurance bill, but he doesn't qualify for Medicare. He's been on disability for two years. Hazel just sold her house because she can't make her mortgage payments. She fears she'll have to move into public housing. If she had some help, she could go back to work. This is just one story but it stands for millions of stories. It's a story that we hope will illustrate to the country that people like Hazel, Angie and Tom have been hardworking, taxpaying American citizens; they've made their contributions to our country. They have been afflicted by a disease that we still are only learning about but understand the devastation it can cause. I know that Alzheimer's is the most expensive and lease insured illness most Americans will likely face. It is a disease that has already hit four million Americans leaving over 19 million relatives and 67 million friends and he extended families of those 4 million to carry the burden of providing the care that the Alzheimer patient so desperately needs. It is predicted in the current trend we see that over 14 million Americans will have Alzheimer's Disease by the middle of the century and the cost, which already exceeds $30,000 to $40,000 to $50,000 a year will be astronomical. I also know that Alzheimer's is not an aging issue; it is a family issue because when it strikes one person in a family, it strikes the entire family. What we have to make all of America aware of is there, but for the grace of God, go many of us and that there are ways we can help provide support and treatment while we continue to look for the answers in research that will enable us to prevent or ameliorate, maintain and control the effects of the disease. This is also an issue that raises as starkly as any what we have done in our health care system that is often so pennywise and pound foolish, that does not recognize real costs, human and economic, of caring for people with long- term care needs. It is so unfair and really nonsensical to draw lines that say, yes, we have a difference between medical care and long-term care, and we will help your father who has a heart attack, but not your mother who has Alzheimer's. For the first time we have a proposal in the President's proposal that understands long-term care and medical care are part of a continuum of care that needs to be available for people. Today, as you know, many people are forced into nursing homes when a little bit of help would enable them to stay at home. We need to begin by giving alternatives that will enable those who have Alzheimer's to live with dignity and not in a nursing as the only alternative where they can get the care they need. We need to have all over the country the types of programs that I have visited in some States that are operating as pilots and models, living hand-to-mouth because the money may not be there next year, but while they are providing care now are doing so in cost effective, humane ways to Alzheimer patients. We also need to recognize that it is not just the Alzheimer patient who needs care, it is the caregiver who also needs care. We need to recognize that you, people like Hazel and Angie, need respite care, need time off. If you are willing to shoulder the responsibility that we as a nation should want you to in caring for loved ones, we need to help you shoulder that responsibility, so we need more opportunities for you to not only have the help you need to do it but to have the time off that will recharge your batteries so that you can go back time and time again. Too many Americans today can only get help by spending their way into poverty and then only if you put your loved one into an institution which is usually the most expensive thing to do and the last thing that many want to do. It just doesn't make sense that is your only option. On this issue, sound family policy is also sound fiscal policy, and to those who say -- and there are many who say this -- that we cannot afford long-term care in our country, I say, we not only can afford it, we have to afford it. It is the most effective way to care for people and to keep families together. If we are going to say we are a pro-family country, let's start acting like it in our official government policies. There's a lot of rhetoric out there about what you should do as family members and how you should take care of your loved ones, but you know, rhetoric without help is not only hollow, it's cruel. What we have done, not just with respect to long-term care, but in so many other areas of health care policy is to hold out empty promises, to make people feel they are all alone in this effort. Stewart referred to the fact that there are now nearly 40 million Americans without health insurance; there are 25 million more who are so underinsured that the idea that they actually have health insurance is close to laughable. They have it if you consider a $5,000 deductible or a $50,000 lifetime limit, or an elimination of preexisting conditions to be health insurance. I think it's a cruel hoax. What we have to do is recognize once and for all that everyone in this country, no matter where you live, no matter where you work, no matter who you are, should be entitled to health care and should that health care include long-term care? Yes, if it's going to live up to the promise that it proposes. Under the President's proposal, there will be more support for the one like Lynn Noyes who is with us today, runs in Northern Virginia. I pick that because it is an example in this area so perhaps the press and others can go see what we're talking about when we talk about these kinds of alternatives. Lynn I met at a meeting at the White House a few weeks ago when she asked me a question about, would you guess, long-term care and since then I've learned that she runs an adult day care center that is a model for what we are trying to do. For those of you who do not know about it, it is called the Family Respite Center. It started with the help of the local Alzheimer's Association Chapter and it gives Alzheimer's caregivers respite, it gives them a chance to go to work during the day, it gives them a chance to take some hours off during the day. They also do a lot of great intergenerational activities with the child day care center there as well. Even with wonderful programs like this, we know that Alzheimer's and the fear of it devastates families, so we have to make preventing Alzheimer's a high priority. So that is why I believe research, particularly into diseases like Alzheimer's, must be a top priority of any health care reform effort. Only a few years ago, we thought that solutions to preventing or delaying Alzheimer's were far away but now recent discoveries indicate that the possibility of dealing with and perhaps preventing and in some way controlling the disease more effectively are within our reach. We can see our investment into Alzheimer's research is beginning to show results. Recent discoveries show that we may be able to delay the onset of the disease, a breakthrough that could reduce the numbers of families and people with Alzheimer's by half. We also know that even that is not enough -- respite, research; we have to go further. We need to invest more money into Alzheimer's research as the President's health reform proposal does so that we can continue and enhance the progress we have made and beat this disease once and for all. As you fight in the coming weeks and months for long-term care and more money for research, I hope you will also fight for the broader cause of health care reform because it is all part of this continuum, this entire system we need to be changed. There's been a lot of confusion and some distortion around the President's proposal and I want to just briefly tell you how our reform will work so that you can advocate on its behalf and explain it to your friends and neighbors. There are several major principles that we want to see in health care reform. First, we want guaranteed private insurance for every American, not government insurance, contrary to what some of the opponents of health care reform say; we want guaranteed private insurance. Remember that the opponents of health care reform today are the descendants by direct lineage of the people who opposed social security when they said it was socialism, the people who opposed Medicare when they said it was government medicine, and every one of you who is eligible for Medicare knows how it works, you pick your doctor, you go where you want and the bill is paid for you to the extent of Medicare coverage. It is the same argument we've had for the last 60 years. So remember when you hear these code words, they are brought to you by the same people who didn't want you to have social security or Medicare either. Guaranteed private insurance has to include comprehensive benefits that do include diagnostic services, mental health benefits and prescription drugs. These are benefits critical to every American, but particularly to people with Alzheimer's. We also want to guarantee your choice of doctor and health plan, a choice that is not guaranteed for you today. One of the real slick arguments against health care reform is that somehow the President's approach will take away your choice of doctor, hospital or health plan. What is happening today? Those of you who are on the front lines know that fewer than half of Americans with health insurance today have a choice of doctor, hospital or health plan because what is happening in an effort to control costs is you're being told, here's the list of doctors you can use under your insurance policy, here is the list of hospitals you an go to. Choice is being taken away from you right now. It is the President's proposal that wants to guarantee choice of doctor and health plan to Americans. Thirdly, we want to outlaw insurance abuse, and that means eliminating preexisting conditions as a bar to health care insurance for Americans. It also means, and this is very important to many Alzheimer patients, eliminating lifetime limits. Why should you, when you finally need health care read the fine print in your insurance policy and discover you have a lifetime limit on benefits when you need them the most. If you pay for insurance, you should be able to get health care when you need it and we will guarantee that you will have that by eliminating lifetime limits. We also believe we should not permit health insurers to discriminate against older people merely on the basis of their age. All of us should be in this together. We ought to go back to an old-fashioned idea which is insurance ought to insure the community -- older, younger, middle-aged, sick, well; we all ought to be in a big pool together and in that great big purchasing pool, we should all pay what will amount to lower rates to insure everybody instead of the kind of cherrypicking that goes on now that eliminates coverage for many people and makes it unaffordable for many others. Fourthly, we want to deliver health care benefits at work which is what most Americans are familiar with and what works for them now. We do not want a government health care system; we want to build on the system we have, a public-private system. We have public hospitals, we have public health, but most of us rely on the private health care system. We want to continue by building on that and making it possible for you to get your health care benefits at your place of work. The difference will be you make the decision of your health plan, not our employer. Small businesses will be given discounts, low wage workers will be given help. We will be able to afford this because if you add the people who pay nothing now to the entire population that is insured, that is billions of more dollars coming into the system. How do people who are not fully insured now or insured at all get their health care? They get it at the latest possible moment by going usually to the emergency room where we do thankfully live in a country where they do finally get some health care, often the most expensive health care that is available to them. When they cannot pay their bill, the rest of us have our premiums increased so we can take care of them. Everybody should be responsible, everybody should pay something. Let's have a level playing field that every single American makes a contribution according to his ability to pay so that every one of us is insured. Finally, we want to preserve and improve Medicare by adding prescription drugs and long-term care. Many of you will, as you talk with members of Congress, be presented with alternative plans. Let me suggest the questions and answers you should be looking for. Does the bill or the approach provide long-term care and listen carefully to the answer. There are those who say, oh, yes, my plan does, but their idea of an insurance plan is you pass reform in the Congress and you set up some government body that then decides what the benefits are. I wouldn't buy an insurance policy like that where you pay your money on the front end and you're told later what it covers. Listen carefully. Make sure it is in the legislation. The President's reform does that. Does the long-term care option emphasize home and community-based care? We don't need more nursing homes; we need more home and community-based care options. As if the long-term care options will be available to persons of all ages, incomes and levels of disability. We do not want anymore means testing or anymore categorical programs where you have to run through hoops in order to qualify. We want this to be available to all Americans regardless of their income, their age, their level of disability. The fact that Tom is 53 years old and in the last stages of Alzheimer's should not bar him from getting help for himself and his family. Let's start taking care of everybody with a long-term care program. Finally, ask does it provide consumer choice because that's what the President's plan does. All of these features that your association helped us as we were preparing the legislation are included in the President's proposal. So what I hope is that you will go from this association meeting and devote some of our precious time, which for many of you as caregivers, is so hard to find but make those phone calls, write those letters, attend those meetings, call those radio talk show hosts when they start going on about government health care, and tell them, that's not what you're for and that's not what the President's for, and explain in your most polite voice, what it is we are trying to do for Americans. Maybe even ask a question like, are you well-insured at that little old radio station you work for? If they decided they didn't like the sound of your voice tomorrow, would you have insurance? Let's get people to start cutting through the rhetoric and all the smoke to think about we are trying to achieve because I appreciated what Stewart said so much. This is not just about health care reform and even looking back from the future about what we've accomplished in health care, this is about what kind of country we are and whether we really care about each other. We have splintered so badly in the last couple of decades. For some of us our country is in many ways not recognizable to the one we grew up in, the kind of place where people looked out for each other and regardless of your income, race or ethnicity, you were part of an extended community that was there for you. We've gotten away from that and here is more than enough reasons for us to catalog but we need to go on from where we are. We need to rebuild the American community. We need to start reaching out to help each other. You do that every single day. You are examples of what we want our country to care about again. So I thank you for what you do and I hope you will help us by stretching even a little bit further to make it possible for us to have health care reform that really does represent the best of America. Thank you all very much. Q Mrs. Clinton, I'm Hilda Prigen (phonetic) from the Minneapolis-St. Paul area and I'm a founding member of this organization so I've been around a long time. My husband Alfred suffered from Alzheimer's Disease for 15 years and my family went through what people on the stage there are going through right now. It is wonderful for me to see -- this is the first ray of hope for our families that long-term care is part of the current health care discussion. I think it's so important. Families want to continue to take care of their own but they need help. We need help the financial burden and the caregiving burden. We're willing to do it, we need help and it's good to hear this. Thank you so much. MRS. CLINTON: Thank you. Q I'm Faye Plix from Orange County, California. I'm an elderlaw attorney here on behalf of my family who cannot speak for themselves. We are greatly appreciative the President's plan includes home-based and community-based care but I have a problem and that is that may of my families are beyond that kind of care. They are about to face or are facing the ravages of nursing home care and I'm wondering if you can give me any hope to bring back to my families. Secondly, my colleagues and I tomorrow are going to be meeting with the Orange County congressional delegation. I'm wondering if you can give us any help in how to make your message more palatable across very partisan lines? MRS. CLINTON: Those are two very important questions. We are trying also in health care reform under the President's plan, to increase the asset level so that so many families do not have to deplete their assets before they are eligible for nursing homes. We think there should be a much higher limit than there currently is. We also want to help nursing homes get more incentives to move into subacute care so that they are not also locked into a typical medical model nursing home that may or may not be appropriate for certain stages of certain diseases, including Alzheimer's. So we've got some incentives for changing that as well. We also believe, and this may sound a little bit unrelated but I've had a number of conversations with nursing home administrators. One of the problems, to be honest with all of you, you know this, in nursing homes is the high rate of turnover of staff. You have about a 60 percent turnover. That is very difficult to get sustained care. There are two things we think will help. One is to have more nursing home beds associated in the same setting with different levels of care so that people will be moving from adult day care to maybe congregate living to nursing homes so that the kind of incentives for home and community based care will actually help nursing home care become better. Secondly, many nursing homes do not provide benefits for their employees, which is one of the reasons you have such a high turnover. Once everyone is required to have health insurance, we believe, and based on those nursing homes that currently provide health insurance that have a much lower rate of turnover, the quality of the staff and the help will be enhanced so that the day-to-day caregiving in the nursing homes will be better. So those are some of the things we are trying to do. Orange County, as you know, is certainly one of the more Republican and partisan areas in the country and the congressional delegation there is quite partisan. I think just tell your stories and don't let them come back at you with the rhetoric. There are lots of ways that we can agree to disagree about particulars, but we cannot permit this debate to be carried out with kind of political partisan rhetoric. We have to get beyond that. So if they start in about the government this or the government that, I think you are obviously well-trained and articulate and can help with kind of getting the conversation back on track. I really believe that this is an issue that should be beyond partisanship. Alzheimer's doesn't point fingers at Republicans or Democrats. That's not the way it works and we ought to be as strong as we can in saying this is an issue that is for Americans and there are ways we can do this that will actually save us money over the long run. So I hope you are successful. Q My name is W.L. Edwards. I'm with the Southeast Tennessee Chapter. Mrs. Clinton, we all appreciate your efforts to include community-based care in the President's proposal. I wonder if you could come on to what extent including community and home-based care in the final bill will be negotiable? MRS. CLINTON: We certainly hope that it is in the final bill but we have to recognize that the Congress needs to hear loud and clear from Orange County all the way to Maine and everywhere in between that this is a real need and it should be met. We are certainly hoping that it can be in pretty much the form that it is in the President's bill. Unless people really get out and work their members of Congress, I can't promise that. It's one of those issues that has to have a lot of grassroots activity behind it in order that it does not get syphoned off. That's where I hope all of you will help us. Q Hello, Mrs. Clinton. My name is Chase and I'm from Charlotte, North Carolina. I'm almost 10 years old. My grandfather has Alzheimer's Disease and we go up to my grandmother's house to see sometimes on he weekends. He likes to walk off and we retrieve him and bring him back. She'd like to have long-term care. How can she get long-term care without being broke? How does your health care plan help my grandmother? MRS. CLINTON: That's actually the question that we've tried to answer for your grandmother and for your whole family because right now, as I was describing the situation Hazel and her daughter face, the woman who is sitting here with me, it is not affordable and it has always struck me as rather odd that we wouldn't help your grandmother or Hazel take care of their husbands at home by giving them a little bit of help or help support and adult day care option in the neighborhood or the community, but we would pay thousands for dollars for nursing home care. So what we are going to do for your grandmother is provide some financial help and some options that will be available to her so she can keep your grandfather at home but have some help doing it, and it will be affordable to her. Q I have a folder here. I lost my wife in 1990 to Alzheimer's and I've been working with them since. I'm from the Northwest Louisiana Chapter. In the folder, I have some pictures, some handwritten letters from some of our constituents, and the insight of two of my grandchildren on what Alzheimer's meant to them. They are so beautifully written and I would like to leave this with you, Hilary. MRS. CLINTON: Thank you, sir. Could I also suggest -- have you kept copies of that? Q I have indeed. MRS. CLINTON: -- and Senators and perhaps leave them a copy as well? Q I am very flattered that you and I have the same thoughts. * * * * *