II. Overview: Home Care in the United States

“[Home care] is the gold standard for America. Where the level of love is higher, people live longer.” — Joan Steede, home care worker, Phoenix, Arizona

Home care workers provide more than just care; they help families and clients everyday.

Joan Steede, a home care worker in Arizona, explained, “It's a combination of health care, housework, cleaning, [and] walking a dog.” Joan supports people at all stages of life: “Probably in a week I go to three different homes, four hours, 12 hours, eight, it varies. I [meet] three, four different families and I may never see them again or the following week, I'll see them again. So I'm a floater. I do whatever they send me to.”

Joan recently helped to provide end of life care for a retired attorney suffering from dementia. The home care Joan provided was “invaluable,” according to the client’s son, Robert Shipman. “For his type of condition. It was the best option.”

“Being able to find somebody like Joan to help enabled him to stay home, which I thought was really important.” Robert said that his father’s condition made more clinical environments difficult. When his father went into the hospital followed by an assisted care rehab facility, it took a toll. “In a setting where he knew nobody, he seemed kind of scared by it a little bit.” As someone with dementia, being back home in a familiar environment enhanced his quality of life. In addition, Joan kept his father engaged. “She interact[ed] with him quite a bit. I think that helped quite a bit.”

Getting care at home also honored his father’s preferences. “Psychologically, he seemed more comfortable with it. He wanted to do it that way and Joan was able to enable that.”

Home care workers also provide greater independence and autonomy to individuals living with disabilities. According to José Hernandez, who shared his experience of living as a C5 quanriplegic during the pandemic in a recent interview hosted by the American Association of People with Disabilities, “If our workers were paid better, we would have a bigger pool and you can hold your aides to a higher standard.” Research proves his point: In California, an increase in wages led to a large decrease in turnover, an increase in hours worked, and an increase in the overall number of workers.

LISTEN to Audio Story: José and Gabrielle. “In this conversation, José Hernandez and Gabrielle Broder, both of whom are classified as C5 quadriplegic, talk about their experiences living with a disability during the pandemic.” An audio story produced by Alexa Burke; Illustration by Micah Bazant.

Denzel Norwich is a 75-year-old grandfather in West Virginia, who became a home care worker after retiring when he heard from a friend that a quadriplegic neighbor needed help. As he observed, people need home care at all life stages: “that can start at the age of zero, clear going to the age of 110. There's all types of [home] health care needed.”

“All of us might need to have someone take care of us someday.” — Kate Jones,¹ home care worker, Parkersburg, West Virginia

The demand for home care will only grow as America ages and lives longer. Most people need home care at some point in their lives and 77 percent of people age 50 and older say they want to age in place. The COVID-19 pandemic also showed how institutional care settings can be dangerous and isolating, as well as more expensive than home care, underscoring the need for alternatives.

Yet, for people experiencing many of life’s biggest transitions, “you're on your own. And I'm seeing a growing older America,” said Joan Steede, a home care worker in Arizona.

With over three decades in home care, Steede would know. She became a home care worker as a single mom while studying to become a paralegal in 1990. She initially worked with the American Cancer Society to provide hospice care and has worked in the field on and off for 35 years since. Now, her two adult children are also caregivers. “Thirty years ago, my clients were in their 70s. Yesterday, I cared for a lady, 97 [years old], who is not going anywhere. We haven't figured out how to provide care for the older adults.”

The undersupply of home care workers, and insufficient health care coverage of home care services prevent many patients from getting the help they need. “I could probably work 54 to 60 hours a week right now. That's how bad the need is, but I can’t do it,” said Joan Steede. Across the country, shortages of workers are impacting how much care is able to be offered. In some communities, half of all providers say they can’t find enough . In addition, inability to pay is another barrier. For “the majority of Americans, their health care covers a couple of hours a day,” according to Steede.

“I love my job. Because I love helping people. I always have. I’ve always been a servant of people. My heart is there. I love taking care of people.” — Gloria Alborzian-Hugh, home care worker, Buckeye, Arizona

Today, choosing to become a home care worker typically means earning low wages with unpredictable hours and no benefits. These impacts fall disproportionately on women and people of color, who make up the vast majority of the home care workforce. State median wages for home care workers range from $9.05 to $16.66 per hour, with a national median of $13.02 (and a yearly median income of less than 30,000 a year). This is significantly less than the national median wage, and few of these workers receive benefits. Many home care workers have wages so low that they are entitled to public benefits, with one-in-six home care workers living in poverty.

Those interviewed explained their choice to work in home care as a calling rather than a smart economic choice. “You get up and you go out, and you know that no matter what happens, you're going to make somebody's life better today is what you're gonna do, no matter what it is,” explained Norwich, a home care worker, Kenova, West Virginia. However, the work is difficult and emotionally taxing. Norwich continued, “But then there are nights I'd come home, and I just say, you know, thank you. Thank you to my supreme power. I survived this day, I didn't think I would survive, you know? I don't know why it just seemed like I always get the … people who are having trouble.”

“Right now, my agency pays me between $15 and $20 an hour and I was making almost $13 [an hour] 30 years ago. That's how far behind the industry is,” said Joan Steede of Phoeniz, Arizona, about the flatline wage growth for home care in West Virginia.

Each home care worker described their passion for helping people as why they became workers and why they choose to stay. “It's not easy. I do what I do because I love what I do. I love to make my clients happy. It is something that I love. I have a passion for it,” said Jacinth Finch, a 62-year-old Certified Nursing Assistant in Miami, Florida, who works 86 hours per week for clients assigned by five different home care agencies. “At some point in my life. I'm going to need care. And because of that, I try to give the best care that I can give, because that is the care I want to have. And when I'm looking after these people I don't see them. I see me lying in that bed, and somebody else taking care of me.”

“We just need a lot more people coming into the field, but unless the wages improve and we get some benefits, it’s not going to draw anybody in.” — Kate Jones, home care worker, Parkersburg, West Virginia

Universally, workers described low wages and the lack of benefits as a hurdle to entry and retention. In fact, the low wages paid to home care workers are increasingly an outlier among service jobs.

“Not enough people are becoming home care workers and there's a reason,” explained Joan Steede from Arizona. “If I'm on my way to make [a low wage] in a very highly charged emotional situation. Is going to be hard. A girl told me she started [at] $20 bucks at Starbucks. So she leaves health care,” she said. “Why does someone who serves you Starbucks make more than the woman who cares for your husband?”

Low compensation is also a barrier to retention. “What saddens me right now is the fact that I drove up the Wendy's and they've got a sign up [that says they] pay $15 starting off, and I'm not even making $15,” said Gloria Alborzian-Hugh, a home care worker in Buckeye, Arizona.

Jacinth Finch, a home care worker in Miami, Florida, has seen the same trend. “Target is paying $20 an hour. Even Burger King. All the restaurants now are paying a lot more than what a lot of us get in health care. And they don't have to lose their sleep at night. They go home to their family at night.”

Low wages for home care workers have created a crisis akin to the “Titanic,” said Steede. “In 20 years, you will need me, but I'll be 85 and I won't be available for you. So ask yourself who is going to care for you in 20, 40, 60 years?”