For most catastrophic or unpredictable events, some type of insurance, whether public or private, helps most Americans manage the circumstance without overwhelming them financially. However, that is not the case for long-term care in the United States.
“We have no system for protecting people who develop needs for assistance in tasks that many people take for granted like eating, bathing, and getting dressed,” explains Judy Feder, McCourt professor and nationally-recognized leader in long-term care policy. “Individuals bear full financial responsibility, even if they ultimately exhaust all their resources to qualify for Medicaid.”
Long-term care is typically defined as a need for help from another person to perform daily living activities. Prices for long-term care services are costly, and people generally lack sufficient income or savings to purchase the care they need. Most people, of all ages, who get help rely primarily on family members and friends, according to the NIH’s National Institute on Aging.
Feder explains that Medicaid, while a critically important program for those who need care, does not insure people against the catastrophic costs of meeting long-term needs. It helps only once financial catastrophe has occurred. If a person enters a nursing home–which now costs, on average, over $90,000 per year–they must contribute virtually all their income and assets toward those costs, before Medicaid kicks in.
The result of current arrangements, Feder emphasizes, is not only impoverishment and inadequate care for people who need it, but an enormous sacrifice of income and health for family caregivers.
Pushing for Policy Action
Feder explains that although the need for long-term care is greatest at older ages, it is not a service just for people over the age of 65. About 40% of the people who need long-term care are under the age of 65. However, the baby boom generation will dramatically increase the number of not just 65-year olds, but also people over the age of 85–significantly increasing the demand for care. The increased demand could threaten income security for people who need care and family caregivers, for those who have them.
While acknowledging that improving long-term care policy has not been at the top of the nation’s political agenda, Feder sees increasing political attention–including among presidential candidates– for what she defines as a system that moves away from having individuals bearing the full risk of long-term care to a social insurance system in which the broad community collectively bears the risk. “As we know from Social Security and Medicare,” Feder explains, “insurance is critical to enabling all of us to live productive and quality lives, protected against unpredictable catastrophic risks–including the risk of long-term care.”
Policy in Practice
Policy change may not be quick, but it moves forward thanks to dedicated researchers, persistent policy leaders, and passionate change makers. Over the years, Feder has led in research-based policy advocacy. In the 1980s, as staff director of the congressional Pepper Commission, she supported members of Congress in developing legislative recommendations to expand health and long-term care. She went on to lead health policy work for the Clinton administration, further long-term care policy development at Georgetown (in collaboration with colleagues and other institutions), and to serve as a Senate appointee on the 2013 congressional long-term care commission.
Her evidence-based approach to policy has borne fruit in policymakers’ long-term care proposals. Feder’s research provided the foundation for Congressman Frank Pallone’s proposal for a Medicare long-term care benefit and has influenced policy plans for long-term care insurance that feature in the 2020 presidential campaigns. Most notable, Feder remains committed to using her robust experience to teach emerging leaders at the McCourt School of Public Policy, a top-ranking policy school that she helped build.