The number of Americans age 65 and over grew nearly five times faster than the total population over the 100 years from 1920 to 2020, according to the U.S. Census Bureau, meaning one in six people was aged 65 and older in 2020 compared to just one in 20 in 1920. A growing aging population also means a growing need for care.
Amanda Kreider, PhD, is an assistant professor of health policy and management and studies the economics around health care workers. Her research focuses on home care workers – people like personal care aides who provide long-term, in-home care to older adults and people with disabilities, helping them with the most basic aspects of daily life, such as getting dressed, eating and bathing.
“It’s important to distinguish this from home health care, which is typically a shorter-term service covered by Medicare or private insurance to help people recover after a hospitalization,” said Kreider. “The workers I study are providing ongoing, day-to-day support that allows people to remain in their homes rather than moving into a nursing home.”
Kreider says she was drawn to this research for many reasons. “Many of us will eventually need this kind of care, whether for ourselves or for a family member,” she said, adding that her focus also comes from personal experience helping her family care for her grandmother, who had dementia.
“We were fortunate in some ways: my mom has ten siblings, and together they were able to pool resources to hire a home care aide. Eventually, my grandmother became eligible for Medicaid, which helped cover the costs of her care. But even with a huge family and those supports in place, my parents were burned out – exhausted, stressed and struggling. It was really hard. That experience showed me firsthand just how valuable reliable home care is, and how much is at stake for families when that care is hard to access.”
Kreider’s work is also driven by “who” home care workers are. Workers are largely women, and disproportionately women of color, doing physically and emotionally demanding work for very low pay – averaging just over $16 an hour – with few benefits and little job security, making them among the most economically vulnerable in the workforce. Wages for home care workers have historically lagged behind even other low-wage service jobs, meaning they could earn more at retail jobs with fewer physical and emotional demands.
“Home care workers and the labor they provide are deeply undervalued in our society,” said Kreider. “I think that’s both an economic problem and a moral one. Practically speaking, there’s simply no path to meeting our growing need for care without making these jobs better: better pay, better benefits, better working conditions. The workforce won’t grow if the jobs aren’t worth taking.”
In her work on the subject, Kreider and her colleagues have identified two recurring issues in home care work that, in addition to low wages, can contribute to a vicious cycle. “We hear a lot of stories about shortages of home care workers, but it’s surprisingly difficult to measure how big those shortages actually are,” she said.
A shortage, in the simplest terms, means there aren’t enough workers to meet demands. Researchers can examine data to determine how many people are receiving home care and compare that to how many are working as home care or personal care aides. Still, researchers can’t address the gap – how many people want home care but can’t find a provider.
There’s another wrinkle: most people receiving home care aren’t paying out of pocket. Instead, 70% of home care is financed by Medicaid, which sets its own payment rates for home care workers. If those rates are too low, they may not be enough to attract new workers into the field, which can worsen shortages.
To find out just how bad the reported shortages have gotten, Kreider and her co-author, Rachel Werner from the University of Pennsylvania, compared the growth of the home care workforce with the growth in the number of people covered by Medicaid for home care services. Since Medicaid accounts for a significant share of home care demand, the comparison shows whether supply is keeping up. However, results show the home care workforce has not been growing as fast as the number of Medicaid beneficiaries with home care coverage, particularly since 2013. That mismatch may help explain why the shortage feels more urgent today than it did in the past.
Another factor in the problems facing home care is the industry’s reliance on immigrant workers. About one in three home care workers is an immigrant, a higher share than almost any other industry. This makes home care more susceptible to intensified immigration enforcement across the U.S.
Kreider and Werner have studied the effects of immigration enforcement on the industry by looking at the Secure Communities enforcement program launched in 2008.
“Almost half a million people were deported between 2008 and 2014 under that program,” said Kreider. “Just like we’re seeing now, those deportations were not limited to people with serious criminal records. In the early years of the program, more than half of those deported had either no conviction at all or had only committed a minor violation like a misdemeanor.”
Their study shows that Secure Communities had a significant impact on home care workers, reducing their numbers by an average of 7-8 percent in counties implementing the program.
“Those workforce losses had real consequences for older adults who needed care. After Secure Communities rolled out, older adults who needed help with daily tasks were about 5 percent less likely to receive any help at home. The effects were especially stark for people on Medicaid: they were more than 23 percent less likely to receive paid home care, with the share getting help dropping from about 20 to 15 percent,” said Kreider, adding that when paid care became harder to find, families stepped in, with the likelihood of family members serving as primary caregiver rising by 10 percent.
The rise in family caregivers also affected other industries, said Kreider. “Family caregivers, who are often adult daughters, may have to reduce their hours at work, and can experience significant stress and health consequences of their own.”
Those findings, according to Kreider, indicate immigration enforcement has a “chilling effect,” which discourages people from participating in public life, even those not at risk of deportation, which in turn will add to the home care worker shortage, adding to a growing crisis.
With Baby Boomers aging, people living longer, and families getting smaller, meaning fewer relatives to provide care, Kreider says there was always going to be a strain on the system. “The challenge could be manageable if we invest in building a real system to meet it. Instead, we have a patchwork that was never designed with an aging society in mind.”
Medicaid only covers home care for people who are very poor or have exhausted nearly all of their assets. Only the wealthy can afford to pay out of pocket. That means middle-class Americans are largely on their own when it comes to finding and paying for home care. Add in the low pay, and it's easy to see the strain the system was under before recent federal immigration crackdowns.
Home-based long-term care is considered an optional benefit under Medicaid, which means states do not have to cover it. With massive Medicaid cuts under H.R. 1, home care could be one of the first places that sees services scaled back or eliminated. The Kaiser Family Foundation reports that more than 600,000 people are already on waiting lists, before any cuts have taken place.
“For someone who relies on Medicaid for home care, losing that benefit isn’t an inconvenience – it’s a crisis,” said Kreider. “Without help at home, the options are limited and often very bad: without family members to step in, people may go without necessities like food, or be unable to manage their own personal care, even basic tasks like bathing.”
Even if states don’t outright eliminate home care coverage, they could cut the rates they pay home care agencies, which Kreider said could worsen shortages. “We already have a serious shortage of home care workers, driven in large part by the fact that these jobs don’t pay well enough to attract and retain people. If Medicaid payment rates get cut further – or don’t keep pace with inflation – it will be even harder to find caregivers, making existing shortages worse.”
-Mike Friend