ADVISORY: Caring About Long Term Care: An Ethical Framework for Caregiving
WASHINGTON, DC – Thanks in part to a century of progress in public health and medicine, many people are enjoying healthier lives. Yet the success of modern medicine also presents us with challenges: as Americans live longer, the need for long-term care and long-term caregivers will continue to grow. Indeed, a defining issue for current and coming generations is how the United States and other nations will address the needs of their aging populations and provide adequate care for the dependent elderly.
The number of Americans between the ages of 75 to 85 will double and those over 85 will quadruple in the first half of this century, overwhelming the nation’s long-term care services with 80 million elderly by 2050-up from the 34 million today who are already mostly underserved or worse. The current health care system is poorly suited to serve the needs of the elderly and their families, and we lack a framework within which to address and improve it.
In a new report “Caring About Long Term Care: An Ethical Framework for Caregiving,” Center for American Progress Visiting Fellow Lisa Eckenwiler discusses the importance of developing an ethical framework to deal with these problems. Please join CAP and a panel of distinguished experts as we examine the coming caregiving crisis and the means by which policymakers and advocates can ethically address it.
Opening Remarks: Melody Barnes, Executive Vice President for Policy at the Center for American Progress
Panel I: The Caregiving Crisis (9:15 – 10:30)
Robert Friedland, Director of the Center on an Aging Society at Georgetown University
Carol Levine, Director of the Families and Health Care Project at the United Hospital Fund
Robyn Stone, Executive Director of the Institute for the Future of Aging Services at the American Association of Homes and Services for the Aging
Moderated by Judy Riggs, Senior Health Policy Advisor for the Alzheimer’s Association
Panel II: An Ethical Framework for Policy (10:45 – 12:00)
Lisa Eckenwiler, Associate Professor of Philosophy and Director of Health Care Ethics at the Center for Health Policy Research and Ethics at George Mason University and CAP Visiting Fellow
Judith Feder, Professor and Dean of the Georgetown Public Policy Institute
Carol Levine, Director of the Families and Health Care Project at the United Hospital Fund
Moderated by Susan Reinhard, Director of the AARP Public Policy Institute
Monday, July 9, 2007
Program: 9:00am to 12:00pm
Admission is free.
A light breakfast will be served at 8:30 A.M.
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Melody Barnes is the Executive Vice President for Policy at the Center for American Progress, where she coordinates and helps to integrate all of the Center’s policy work from the policy departments, fellows, and the Center’s network of outside policy experts.
From December 1995 until March 2003, Barnes served as chief counsel to Sen. Edward M. Kennedy (D-MA) on the Senate Judiciary Committee. As Kennedy’s chief counsel, she shaped civil rights, women’s health and reproductive rights, commercial law, and religious liberties laws, as well as executive branch and judicial appointments. Barnes’ experience also includes an appointment as Director of Legislative Affairs for the U. S. Equal Employment Opportunity Commission and serving as assistant counsel to the U.S. House of Representatives Judiciary Subcommittee on Civil and Constitutional Rights. During her tenure with the Subcommittee, she worked closely with members of Congress and their staffs to pass the Voting Rights Improvement Act of 1992, which was signed into law.
Barnes began her career as an attorney with Shearman & Sterling in New York City and is a member of both the New York State Bar Association and the District of Columbia Bar Association. She is also a member of the Board of Directors of The Constitution Project, EMILY’s List, and The Maya Angelou Public Charter School. She received her law degree from the University of Michigan and her bachelor’s degree from the University of North Carolina at Chapel Hill, where she graduated with honors in history.
Lisa Eckenwiler is Associate Professor of Philosophy in the Department of Philosophy and Director of Health Care Ethics at the Center for Health Policy Research and Ethics at George Mason University. She has published widely on research ethics, and also has written on access to AIDS, policy for pregnant addicts, and the ethical implications of work in biodefense and emergency preparedness. Her book, The Ethics of Bioethics: Mapping the Moral Landscape, has just been published by Johns Hopkins University Press. Currently she is writing a book on justice and caregiving in the context of globalization.
Professor Eckenwiler earned her B.A. from the University of Wisconsin-Madison and her Ph.D. in philosophy with a concentration in bioethics from the University of Tennessee-Knoxville. Prior to joining the faculty at George Mason University she was Associate Professor of Philosophy and Co-Director of the Institute for Ethics and Public Affairs in the Department of Philosophy at Old Dominion University, and also taught in the medical humanities program at Loyola University’s Stritch School of Medicine. From 2002-2003, she served as Director for the Consortium to Examine Clinical Research Ethics at the Center for the Study of Medical Ethics and Humanities at Duke University. In 2006 she was a Visiting Fellow at the Center for American Progress in Washington, D.C.
Judy Feder is Professor and Dean of the Georgetown Public Policy Institute and was the 2006 Democratic nominee for Congress in Virginia’s 10th congressional district. A widely published scholar, her three decades of policy research began at the Brookings Institution, continued at the Urban Institute, and, since 1984, has flourished at Georgetown University.
Feder has also held leadership policy positions, both in the Congress and in the executive branch. As staff director of the congressional Pepper Commission (chaired by Sen. John D. Rockefeller IV), Feder is widely credited with setting the stage for the health reform debate of the 1990s. In 1993, she was appointed to the Department of Health and Human Services, where she worked to expand health insurance coverage, effectively manage Medicare and Medicaid, and assure the safety of food and drugs.
Feder today pursues her policy leadership first and foremost by educating future policy leaders at Georgetown’s Public Policy Institute. She continues her research as co-director (with Sheila Burke) of the Georgetown University Long-term Care Financing Project and as senior advisor to the Kaiser Family Foundation’s Commission on Medicaid and the Uninsured.
Feder is an elected member of the Institute of Medicine, the National Academy of Public Administration, and the National Academy of Social Insurance; a former chair and board member of AcademyHealth; a board member of the National Campaign to Prevent Teen Pregnancy and the Center for American Progress Action Fund Committee. She is also a member of the National Research Council’s Standing Committee on Research and Evidentiary Standards, the Robert Wood Johnson Health Policy Fellowships Program Advisory Board, and the Hamilton Project’s Advisory Council.
Feder is a political scientist, with a B.A. from Brandeis University (1968) and a Master’s (1970) and Ph.D. (1977) from Harvard University.
Robert Friedland is the founding Director of the Center on an Aging Society at Georgetown University. Friedland has had a wide range of research and public policy experience, including Chief Economist for Maryland’s Medicaid program; Senior Research Associate at the Employee Benefit Research Institute; Director of the American Association of Retired Person’s Public Policy Institute; Research Director, National Academy of Social Insurance; and Economist on the staff of the U.S. Bipartisan Commission on Comprehensive Health Care, better known as the Pepper Commission.
Friedland has written on issues pertaining to the financing and delivery of health care and long-term care and retirement income security. His book, Facing the Costs of Long-Term Care, was awarded the 1992 Elizur Wright Award by the American Risk and Insurance Association.
Friedland is on the board of the National Academy for State Health Policy, the Long-Term Care Education Foundation, and the Editorial Board of Aging Today. Friedland received his doctorate in Economics from the George Washington University in 1983.
Carol Levine joined the United Hospital Fund in New York City in 1996 where she directs the Families and Health Care Project. This project focuses on developing partnerships between health care professionals and family caregivers, who provide most of the long-term and chronic care to elderly, seriously ill, or disabled relatives. She was director of the Citizens Commission on AIDS in New York City from 1987-91 and director of the Orphan Project 1991-96. As a senior staff associate of The Hastings Center, she edited the Hastings Center Report. In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics.
She edited Always On Call: When Illness Turns Families into Caregivers, which was published in 2000 by the United Hospital Fund; a revised and expanded edition was published by Vanderbilt University Press in 2004. She is the author of Making Room for Family Caregivers: Seven Innovative Hospital Programs, a United Hospital Special Report published in 2003, and with Thomas H. Murray, co-editor of The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Makers, to be published by Johns Hopkins University Press in 2004. She is also editor of Family Caregivers on the Job: Moving Beyond ADLs and IADLs (New York: United Hospital Fund, 2004) and guest editor of the Winter 2003-2004 issue of Generations, published by the American Society on Aging, titled "Family Caregiving: Current Challenges for a Time-Honored Practice."
She has written several books and articles, including a "Sounding Board" essay in the New England Journal of Medicine entitled "The Loneliness of the Long-Term Care Giver" (May 20, 1999). She has published articles and reviews in Journal of the American Medical Association, Journal of the American Geriatric Society, Journal of General Internal Medicine, Health Affairs, American Journal of Nursing, as well as in the popular press.
She received a BA in history from Cornell University, where she was elected to Phi Beta Kappa, and an M.A. from Columbia University in public law and government. She received a Ford Foundation Foreign Area Training Fellowship for study at Columbia’s Russian Institute.
Robyn Stone is the executive director of the Institute for the Future of Aging Services at the American Association of Homes and Services for the Aging in Washington, D.C. Since she started IFAS six years ago, she has developed and directed a number of national programs including the Center for Medicare Education, the Better Jobs Better Care National Program (funded by the Robert Wood Johnson Foundation and Atlantic Philanthropies), and the National Initiative to Link Affordable Senior Housing with Health and Supportive Services (funded by the U.S. Department of Health and Human Services, the U.S. Department of Housing and Urban Development and the McGregor Foundation.
Stone has held senior research and policy positions in both the U.S. government and the private sector. She was a political appointee in the Clinton administration, serving in the U.S. Department of Health and Human Services as Deputy Assistant Secretary for Disability, Aging and Long-term Care Policy from 1993 through 1996 and as Assistant Secretary for Aging in 1997. She has been a senior researcher at the National Center for Health Services Research (currently the Agency for Healthcare Research and Quality), Project Hope’s Center for Health Affairs, and Georgetown University. Stone has been on the staff of two important national task forces, the 1989 Bipartisan Commission on Comprehensive Health Care (the Pepper Commission) and the 1993 Clinton Administration Task Force on Health Care Reform.
Her doctorate in public health is from the University of California, Berkeley.
Susan C. Reinhard is the Director of the AARP Public Policy Institute, the "think tank" of AARP. The AARP Public Policy Institute is the focal point for public policy research and analysis (federal, state, and international) at AARP. Its mission is to inform the development of AARP’s public policy positions and to contribute to and influence public debate on issues of importance to midlife and older Americans. Prior to this appointment, Reinhard served as a Professor and Co-Director of Rutgers Center for State Health Policy. She is a national expert in long-term care, with special expertise in helping people manage their chronic disabilities at home. She began her career as a visiting nurse, which led to her lifelong dedication to supporting individuals and their families. As Deputy Commissioner for the New Jersey Department of Health and Senior Services, Reinhard worked with three governors to develop new programs for home care and respite for family caregivers. She has worked with more than 30 states to create and fund similar programs. Her Burden Assessment Scale has been used internationally by other researchers who study the effectiveness of family caregiver programs in reducing their stress. She is committed to teaching nurses and other professionals how to interact with consumers and their families in ways that reinforce what they are doing well on their own and what more they can do to manage their daily challenges.
Reinhard’s background includes clinical care, nursing education, research, policy development, and state governmental relations. In previous work, she co-founded the Institute for the Future of Aging Services in Washington, D.C. and served as its Executive Director of the Center for Medicare Education. She is a former faculty member at the Rutgers College of Nursing and Chair of the Expert Panel on Aging at the American Academy of Nursing. She holds a master’s degree in nursing from the University of Cincinnati, and a Ph.D., in Sociology from Rutgers, The State University of New Jersey.
Judy Riggs is the Senior Health Policy Advisor for the Alzheimer’s Association. Riggs has worked on social policy issues in Washington, D.C. for over 30 years. In 1989, she joined the Alzheimer’s Association to help open its Washington office, where she served as Director for Federal and State Policy and, most recently, as Acting Vice President for Public Policy. During that time, the Alzheimer’s Association has emerged as a leader of efforts at both the federal and state levels to improve financing, delivery and quality of health and long term care. She has written and spoken extensively on Alzheimer’s and long-term care, family caregiving, and Medicare and chronic care. From 2000 to 2006, she served as consumer representative on the National Advisory Council on Aging at NIH.
Judy now serves as senior health policy adviser to the Alzheimer’s Association. She volunteers with Community Hospices of Washington and chairs the Program Committee of the Alzheimer’s Family Day Center in Fairfax County, Virginia.