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Caregiving has long been shunted aside and undervalued in the United States. Long-term care (LTC) is no exception. Sometimes called “long term services and supports,” LTC is the help that over 40 million Americans who are sick or disabled need every day to complete basic tasks like bathing, eating, getting dressed, going to the bathroom, paying bills, or buying groceries.
American social welfare policy has largely ignored LTC, and families, who are largely left to manage it on their own, increasingly strain to meet loved ones’ needs. This problem will only worsen with the collapse of private insurance for long-term care and the large number of people with dementia-related conditions.
Resistance to developing social policy to help people with LTC comes in two main forms: First, some people say the problem of designing public support for LTC is too big to solve. Second, others suggest that it’s not a problem at all—caregiving is just what families do, so the state need not intervene. Neither of these arguments holds up well.
The problem is indeed big. The average adult child who is caring for an aging parent faces costs of $180,000 over two years—measuring costs in terms of lost wages and harm to personal well-being. The average monetary costs (such as lost wages, pension, and social security) for an adult who leaves the workforce to care for a parent are upwards of $300,000. One estimate of the aggregate cost of informal long-term care in the U.S. is $470 billion per year. (This estimate, while staggering, is low because it factors in care only for adults with limitations, not for kids. It also calculates cost narrowly, in terms of hours of informal care at a relatively low average wage of $13.81 per hour.) Compare that to total Medicaid spending of $167 billion on LTC in FY 2016—Medicaid is the main payor for formal LTC, but only for families under low asset and income thresholds—and total estimated spending of $366 billion from all sources.
But the failure to develop any kind of compelling solution to help pay for LTC does not make the costs of long-term care vanish. It simply privatizes and hides LTC from the public eye. Families bear the costs through lost wages, dollars spent on caregivers, forgone retirement savings and job opportunities, and other less easily quantified forms such as injury or depression that arise from caregiving.
The idea that families should bear these costs might have been more reasonable years ago, when breadwinner household structures were still intact, but this idea is increasingly hard to defend. Families are changing in structure in ways that don’t leave them with capacity to manage informal caregiving. More and more households have two working parents or only one parent. Simultaneously, long-term care needs are escalating as people live longer and have fewer kids, and as changes in medical practices increase the intensity of informal care—including new inpatient care payment methods that lead to “quicker and sicker” hospital discharges and result in a greater number of unstable patients being sent home.
Arguments for publicly supporting caregiving, more generally, apply to LTC. But LTC is also different in nature in ways that demand a unique policy response. LTC needs are often unpredictable. Every one of us might—but not all of us will—become responsible for the long-term care of a parent, spouse, partner, or child who is ill or disabled. Even among those who do, some of us will provide very little LTC support—we might help a spouse through illness for a period of time, swoop in for several weeks or months to support a parent at the end of life, or provide sustained but minor support to a parent who can still do a lot on her own. Others will incur deep caregiving responsibilities by, for example, having a child with a serious disability who will need significant care for his entire life, or a parent who suffers from dementia and needs significant care for years before she dies. Fourteen percent of people need long-term care for five years or more.
Because of this unpredictable and uneven distribution of caregiving responsibility, the insecurity that families experience from the responsibility can be conceptualized as a risk—an insurable one. I’ve argued elsewhere that we should think of it as “next-friend risk.” We have typically thought of the risk of LTC as that of needing care, but we could equally think of it as the risk of becoming responsible for the LTC of a loved one.
This reframing could make the problem more solvable. Lawmakers might not want to focus on their own mortality, but many can relate to the experience of becoming responsible for a parent or spouse.
Next-friend LTC risk resembles other risks that have motivated social insurance solutions in the past, like Medicare or Social Security. The distribution of risk is uneven and, at the high end, would impoverish most families. Spending could create inter-generational insecurity by causing, for example, adult children to deplete their own savings, sidetrack careers, or give up jobs and earnings to help a parent. Seeing the problem as a universal one, and one that few families could manage well on their own, might increase the motivation to solve it.
Furthermore, the burden of LTC falls disproportionately on some people more than others. Women provide the majority of informal LTC, and more than one-half of African American caregivers are “sandwiched” between caring for both older and younger family members. The disparate impacts of LTC create a greater moral imperative to solve this problem, to prevent it from exacerbating and perpetuating wage gaps by gender and race.
When we look at LTC from the perspective of people providing care—the next friends—it becomes clear that a policy solution is critical and that it could benefit almost every American household (a small few could self-insure against such risk).
Only a universal, social insurance program can effectively mitigate the costs of LTC. Private insurance has failed, after years of limping along. The Affordable Care Act took a shot at social insurance with the Community Living Assistance Services and Supports Act (CLASS Act), but it failed because it was voluntary in nature and crumbled under its own actuarial weight. The CLASS Act was a step in the right direction but did not go far enough.
The U.S. is an outlier in how little public money it spends on LTC. This leaves lots of room for improvement. But a good LTC policy solution must take the scope and extent of the problem seriously. LTC is at least mentioned in some versions of Medicare-for-All plans among Democratic presidential candidates, in a standalone proposal by Pete Buttigieg, and in current legislative bills. Any solution should be structured with adequate compensation for both formal and informal workers in both home and group settings. Such flexibility would allow families to mitigate risk to household security while ensuring loved ones receive care in a satisfying way.
As our peer nations illustrate, there are many ways to think about designing LTC policies. But no matter the solution, it is painfully clear that we cannot continue to ignore this problem that leaves so many Americans vulnerable.