My dear friends, this is an opportunity that will be rare for us in our legislative experience... when you go home tonight and you close your eyes and you sleep and you ask, "What have I done today to lighten the burden upon those who suffer," at least you could say, "I helped a little bit today; I voted to help those who needed help.” -Claude Pepper, floor statement Acknowledgements The deliberations and recommendations of the Pepper Commission would not have been possible without the extensive support of individuals and organizations too numerous to mention. First and foremost, the Commission is indebted to the many individuals who shared the hardships they have faced in obtaining or financing health and longterm care, so that we might benefit from their experience. Second, a multitude of organizations and individual experts identified problems and proposed specific solutions which influenced the Commission actions. Third, in its deliberations and preparation of its report, the Commission benefited from the extraordinary expertise and commitment of particular individuals. The Congressional Reference Service contributed invaluable support. Janet Kline, Mark Merlis, Beth Fuchs, and Janet Lundy provided information and analysis throughout the process. Specific analyses were prepared by Richard Price, Carol O'Shaughnessy, Melvina Ford, Ed Klebe, and Jennifer O'Sullivan. Joan Sokolovsky provided valuable research support. Fourth, as indicated in the supplementary volume to this support, the Commission drew upon numerous agencies and individuals to prepare background materials for the Commission's deliberations. The efforts of the General Accounting Office, the Office of Technology Assessment, and the Department of Health and Human Services are particularly appreciated. Fifth, the Commission is grateful for the invaluable editorial support provided by Felicity Skidmore and Lynn Lewis, and for the capable production assistance of Leon Stern. Finally, the analysis presented here would not have been possible without the assistance of numerous consultants. The Commission is particularly appreciative of the efforts of David Kennell, Lisa Alecxih, John Sheils, Marilyn Moon, and Kenneth Thorpe. Executive Summary WHY DO WE NEED HEALTH CARE REFORM? Who Is Uninsured and Why? Uninsured Workers Coverage of the Poor Who Cares for the Uninsured? Barriers to Care Financing Care for the Uninsured Is Health Care for the Insured In Jeopardy? BLUEPRINT FOR HEALTH CARE REFORM Building Universal Coverage Strengthening the Health Care System Beneficiaries and Costs of the Commission's Health Care Recommendations WHY DO WE NEED LONG-TERM CARE REFORM? Who Needs Long-Term Care? How People Get and Pay for Care Caring for People at Home Nursing Home Care The Emergence of Private Long-Term Care Insurance Prospects for the Future BLUEPRINT FOR LONG-TERM CARE REFORM Building a Long-Term Care System Beneficiaries and Costs of the Commission's Long-Term Care Recommendations REVENUES TO FINANCE COMMISSION RECOMMENDATIONS A CALL FOR ACTION 1 2 2 2 3 4 4 5 5 6 7 8 9 10 10 11 11 11 12 12 14 14 15 16 18 18 Our health care system still inspires awe-and rightly so. Americans should be proud of a system that can provide the best care in the world. But our system also creates fear-among the millions already excluded from it and the increasing numbers at risk of exclusion: • Uninsured pregnant women, without the resources to seek prenatal care; • Workers who are ill, with preexisting conditions that may cost them their health insurance if they change jobs; • Workers in small businesses, for whom a sudden illness can put insurance premiums out of reach for the entire firm; • Workers with good coverage, who see their benefits threatened each time they go to the bargaining table; • Families whose emotional and financial resources are exhausted from providing long-term care to frail parents or disabled children. Finally, our system breeds frustration-among the many who seek ways to reform it and resolve its problems. Most reformers agree that our health care system should cover all Americans. But to do so, some would replace the system. Others would reshape it, often in dramatically different ways. People and institutions criticize and ultimately reject initiatives that differ from their ideal or that in their view-move too fast or too slowly. If their first choice is unattainable, the second choice for many is to do nothing. Public policy is paralyzed. The fear and the flaws continue. The Pepper Commission calls for action to end that paralysis with recommendations for legislation that would guarantee all Americans coverage for health and long-term care within a system that both ensures quality and contains costs. To develop these recommendations, the Commission intensively investigated the problems and alternative actions to address them. It listened to numerous witnesses in public hearings held in the nation's capital and around the country. It heard from experts in health and long-term care. In the process the Commission gathered a wide range of views from consumers, employers, workers, providers, insurers, and numerous organizations and groups. Then its members met in a series of working sessions to consider all these views, clarify their own objectives, and develop recommendations to achieve them. Based on a shared view that current conditions are unconscionable and that public action is urgent, the Commission unanimously agreed that all Americans should have access to affordable health and long-term care coverage in an efficient and effective system. "Allowing these health and long-term care problems to persist not only deprives millions of Americans of what they ought to be able to have...it diminishes our economy.... [and] ... the United States of America. I don't think it's possible to say... that we are a civilized nation when so many of our people... do not have long-term care, do not have health insurance." - Senator John D. Rockefeller IV After further intense debate, the majority of the Commission adopted specific recommendations to achieve this goal. These recommendations reflect the view that we must begin to build universal health care coverage now. We must pursue the workable rather than the ideal. We must secure and improve the health care system for all Americans, including those currently left out. And we must create a longterm care system that serves our nation's severely disabled and addresses the deepest fears of Americans-elderly and nonelderly-about their future should they become disabled and need long-term care. |