Diane Silbernagel runs HomeCare Options, a home health-care agency in Passaic County, New Jersey. When she became Executive Director of HomeCare Options in 2016, she had 215 home health aides working for her agency. In early 2020 that number had shrunk to 185 because many long-time workers had retired. Then the pandemic hit and dozens of home health aides quit because of COVID fears or stayed home to care for their children. Today, Silbernagel is down to about 115 aides, not enough to meet the demands of her clients, so there’s a waiting list. “We’re losing aides every year,” Silbernagel sighs. “We used to hold a training class and there would be 30 or 40 women in it. Today, we can only get seven or eight people. People don’t want to do this kind of work. It’s physically hard. It’s socially isolating. It’s not glamorous and it’s not well compensated. There’s no career ladder. It’s all of the above.”
As the U.S. economy recovers, the shortage of direct care workers who provide home and community-based services (HCBS) has become acute around the country. It’s not that no one is taking these positions, which often pay minimum wage, rarely provide health insurance and offer little or no paid time off. The direct care workforce more than doubled between 2009 and 2019, growing from over 1 million to more than 2.3 million, according to PHI, a nonprofit group that promotes the creation of quality direct care jobs. But demand has outstripped supply as the U.S. population ages and the movement to shift people out of institutional settings has gained traction. That has forced many families to turn to the so-called gray market like Craigslist where workers may have little or no training. Nearly one third of Americans who arranged paid care for an older person or someone with dementia employed workers who were not part of a regulated agency, according to a recent study by the Rand Corp. That makes it nearly impossible to track the quality of care provided, the authors note.
Ann and Robert H. Lurie Children’s Hospital pediatrician Carolyn Foster, MD, studied the home-care situation facing medically fragile children and their families from June to October 2020. These children often need around-the-clock support from a nurse or healthcare professional. The study, which included 140 families, found that half of them had difficulty accessing home health-care workers during the pandemic. This problem also preceded the pandemic as families reported that they were only getting about half of the hours they were entitled to receive. “They can’t find people to fill the shifts,” says Foster, who also is a clinical professor at Northwestern University’s Feinberg School of Medicine. “Without nursing, children risk being functionally institutionalized in the hospital because there’s no safe discharge plan for them.”
People don’t want to do this kind of work. It’s physically hard. It’s socially isolating. It’s not glamorous and it’s not well compensated. There’s no career ladder. It’s all of the aboveDiane Silbernagel, Executive Director of HomeCare Options
The worker shortage would likely improve if Congress passes the Biden Administration’s $3.5 trillion budget bill, which proposes spending an additional $400 billion on HCBS. Some disability rights advocates hope much of the money will be used to increase pay and benefits for direct care workers, the vast majority of whom are women. Others have recommended the funds be used to eliminate all state waiting lists for HCBS with an estimated 800,000 people across the country currently waiting.
Numerous experts have pointed out that the U.S. is probably 1 million workers short of meeting the goal to reduce waiting lists, and recruiting and training such a large number of people would be extremely difficult in the short term. Still, the fact that the direct care workforce has garnered attention at the highest levels of government is good news to many. “It’s a turning point for our field that these issues are considered a foundational, presidential priority,” says Stephen McCall, Data and Policy Analyst with PHI. McCall estimates that with retirements of current workers, high turnover and increased demand for home care, the U.S. is going to need to fill 4.5 million jobs in the coming years. “These challenges could become increasingly insurmountable unless we address job quality now,” he warns.
In theory, pay should rise for sought-after workers until supply and demand are in balance. But it’s not that easy because the majority of HCBS is paid for by public programs such as Medicaid and Medicare. That means legislators need to appropriate more money if wages are to rise, points out James Toews, former Principal Deputy Administrator of the Administration for Community Living (ACL). Raising the wages of direct care workers by $1 an hour isn’t going to help much because other companies like Amazon or McDonald’s can match or exceed that. “You have to be $3 to $4 above minimum wage to make an impact,” says Toews, who managed Oregon’s $3 billion system of long-term services and supports (LTSS) in the 2000s. “Many states are moving to a minimum wage of $15 an hour, which means home health care would need to pay $18 or $19 an hour. Even a dollar or two an hour rolls up to million and millions of dollars for a state.” Some states have turned their Medicaid spending over to giant managed care companies such as UnitedHealth or Aetna. Those companies are looking to cut costs, not increase wages.
It’s a turning point for our field that these issues are considered a foundational, presidential priority.Stephen McCall, Data and Policy Analyst with PHI
Yet it’s not just about the pay. There’s not much of a career path for direct care workers, experts point out. Unlike the retail or hospitality industries, there are few management positions to aspire to. PHI’s McCall suggests creating more “specialist” positions among direct care workers, those with extra training to deal with certain complicated conditions like dementia or heart disease. Those positions would pay more, give workers an incentive to continue their education and raise the overall profile of the direct care profession, he says.
None of these challenges are insurmountable, Toews says. One solution he recommends is allowing people who need direct care services to have the power to hire and fire their own aides, a service delivery model known as “self-direction.” When Toews left his LTSS job in Oregon, 65-70% of home care workers were family members, friends or associates of the person being cared for. “We had virtually no shortage of workers,” he says. “On the other hand, personal care companies had huge shortages. Self-direction is very different from tapping into the public marketplace.” Nationwide, there are about 1.2 million Medicaid recipients who are self-directing, Toews says. Rolling out that model more widely would require a much larger number of states to embrace self-direction and change Medicaid program rules. That won’t be easy, Toews acknowledges, because many legislators remain opposed to the idea of paying family members to provide care.
Toews also has another potential solution: making more widespread use of live-in care givers who provide a few hours of care a day in exchange for subsidized or free rent. “Finding workers to come in for a few hours a day is really hard,” he notes. “A lot of people go into assisted living because they’re lonely and scared. Having someone live in can fill a gap for a lot of people.” The Medicaid program doesn’t pay landlords, but the proportionate living cost of a care giver can be tucked into a benefit package of an HCBS recipient. The reason that benefit is rarely utilized is the difficulty of recruiting a workforce that wants to live in and matching them with clients. “But we could set up companies to do that,” Toews says. The HCBS system is complex, and issues with the HCBS workforce are multi-faceted. Experts suggest it will take numerous different solutions to make a meaningful impact on this crisis. However, policy changes such as raising the minimum wage for direct care workers, career ladder development, and increasing self-directed care could change the momentum for places like HomeCare Options and Silbernagel, allowing them to have enough staff to deliver supports for everyone in their community who needs them.