For the past five years, Leighann Gillis has been a home care worker to Nat, a 25-year-old woman who can’t take care of herself.
Diagnosed with a number of cognitive disorders—including autism, bipolar, and anxiety—Nat can’t shower or get dressed by herself. If left alone, sometimes she’ll hit or scratch herself, and when other people are around, sometimes she’ll try to head-butt them. Occasionally, she gets so excited while walking around outside that she tries to bolt out into the street, whether or not there’s traffic around. Now and then, she’ll scream and shout for seemingly random reasons.
“She’s just acting out because she’s unable to speak or comprehend what’s happening to her,” says Gillis.
Gillis, who is 31, was born and raised in southern Maine, where she now lives with her partner and their mother. She got a bachelor’s degree in visual arts, but says she got tired of working “crappy jobs” where she felt disposable. She began volunteering at Spindleworks, a non-profit art center for adults with disabilities. “I quickly realized that everything I thought I knew about developmentally and intellectually disabled folks was wrong and misinformed,” Gillis says. “I also realized that this was a community I wanted to spend time with.” She got certified as a direct support professional, and soon met Nat.
During their time together, Gillis has become an expert at decoding Nat. When she’s bored, Nat will chew on her purse strap. If she doesn’t want to be doing an activity, she’ll do a series of little coughs. When she’s happy, she’ll clap, hum, wiggle her head, and seek out eye contact. “That’s something she can’t handle when she’s upset or not feeling well,” Gillis says. “We spend a lot of close time together. I see her more than most adult children see their parents.”
Gillis is one of at least 2.1 million paid home care workers in the country. Broadly speaking, these workers are hired to provide assistance and health support to older adults or people with disabilities. The wide scope of that definition is because the job itself shifts depending on the client—more granularly, those labeled personal care aides tend to help with everyday daily tasks, while home health aides and nursing assistants do that while also performing clinical tasks, like administering medicine and taking blood pressure. But the job is essentially helping someone who can’t live on their own.
A typical day on the job
As a direct support professional, Leighann’s morning involves brushing Nat’s teeth, showering her, getting her dried, applying deodorant, powdering her feet, putting on compression socks, dressing her, and getting her shoes on before they go out. They often take walks around the neighborhood, and end up going shopping for groceries, supplies, and clothes, allowing Nat practice making choices and picking up items. During lunch, Leighann cuts Nat’s food into manageable bits. After dinner, she gets Nat ready for bed by washing her face and armpits, reapplying deodorant, and checking her feet for blisters, sores, or cracks, before brushing her teeth once more.
“A key part of the job is getting to know each individual and adapting services to their needs,” says Kezia Scales, director of policy research at the Paraprofessional Healthcare Institute (PHI), a non-profit that works to improve how elders and those with disabilities are served. “The more of a consistent relationship you have between the home care worker and consumer, the better the outcome for that individual.”
High turnover and low pay for a tough job
Consistency between workers and clients is rare. Worker turnover in the industry is estimated at 67 percent a year, a staggering rate that ripples to the third of workers that are able to stick it out. To make matters worse, demand for home health aides in particular has surged due to an aging population.
While Leighann has remained with Nat for six years, she’s only there three days a week, and so, is only one piece of the care puzzle. And for Nat’s care to be managed properly, every worker involved has to be on the same page, a tough act when seemingly everyone keeps cycling out. “Our supervisor has consistently attempted to get us back-up staff, but they keep quitting in favor of other, higher paying jobs, often before they even finish training with us,” Gillis says. “We are now on our fifth person in under two years.”
The largest reason for such dramatic turnover is simple: the job doesn’t pay well. “You can quite literally go work at a fast food place or gas station for the same amount or more, and much less responsibility,” Gillis says, who earns $13 an hour caring for Nat three days a week, 10 hours a day—but has no paid leave or benefits. (To make ends meet, she’s had to pick up another job; when she’s not with Nat, she’s restoring, rebuilding, and repairing antique and vintage rugs.)
Depending on how much value you put in benefits, this is roughly near average for the country. According to PHI, home care workers make $11.03 an hour, or around $15,000 a year, an unlivable wage in 2018 America. In fact, half of all home health aides rely on public assistance to make ends meet
“No matter how much people are saints and love the job, they can’t survive,” says Bill Dombi, President of the National Association for Home Care & Hospice.
While some families can afford a higher cost for private home care—and thus, workers that are less motivated to find other lines of work—many families rely on the cost to be at least somewhat mitigated by state-run Medicaid programs, budgets that are inherently being used as political battlegrounds.
“State budgets are always stretched, with the money going toward education, public safety, and so on. The states just don’t believe they have the money, or somebody else has more influence than home health care companies,” Dombi says. “Rates [for home care workers] haven’t been cut so much as never increased, while costs have gone up. And you end up with workers in poverty and public assistance programs themselves.”
One in five home care workers live below the federal poverty line, and more than half rely on some form of public assistance themselves, according to numbers provided by PHI. As you’d expect, this has led to a workforce composed of those who most desperately need jobs, meaning that it heavily leans female (87 percent vs. 13 male), and is dominated by people of color (around 60 percent of workers are POC, over one-quarter born outside of the U.S.).
The lack of willingness to fund home care means that states are often forced to outsource aspects of their programs to outside companies. This can add stress to the gig by creating confusing logistics, for instance, when Leighann is trying to coordinate transportation for Nat. “It’s an ongoing battle just to talk to someone,” Gillis says. “And when you do, it’s not with those driving vehicles, so you’re struggling with transportation folks who aren’t picking her up on time, or bringing her home on time. I’ve even heard of times when, if a caregiver wasn’t home, they’d just leave a client by themselves.”
Campaigning for more funding for home care workers
All of this is why Gillis has has recently been on the campaign trail in Maine.
On Maine’s impending midterm ballot is Question 1. If passed by voters, it would create a Universal Home Care Program through an increase of taxes on higher-income households—specifically, a 3.8 percent tax on incomes above $128,400. It’s been been estimated that the tax would generate between $180 million and $300 million a year to subsidize in-home care for elderly and disabled residents. It’s one way to close the gap between the care that the rich are able to afford, and the care that those with lower incomes have to settle for.
On the worker side, it would mean higher wages, and therefore, trim the high turnover rate. It would also make Maine’s home care workforce state employees, which would create basic safety standards for the job, and give workers the ability to unionize if they voted to do so. “Question 1 would create a path to success, and a career, for workers,” Gillis says. Meanwhile, the “no” side has called Question 1 a “scam,” arguing that the tax would force high-earning individuals out of Maine while creating “yet another quasi-governmental board with zero oversight and no ability to remove board members for poor performance or corruption.” It’s a pretty by-the-book battle between worker-led power and “small government” ideology, and the final vote will go a long way toward seeing if the voting public has the political will to tax the rich to pay for what’s quickly becoming a growing necessity.
Over the past decade, as long-term health service has shifted from the nursing home environment to private settings, the number of home care workers has doubled in size. An estimated 47.8 million people currently need home care, a number that’s projected to rise to 88 million in 2050. And if there isn’t a growing workforce willing to trade their time for low pay, handling the influx of baby boomers into the age spectrum that requires assistance will mean either really awful care, or the work being absorbed by untrained family members themselves. (Millennials in Maine would be wise to keep this in mind when voting.)
But no matter how the vote goes, Gillis isn’t going anywhere. She found what she loves doing, and that’s caring for Nat. “Nat is such a sweet, happy, cheerful person. When she smiles, the whole world smiles with her,” Gillis says. “I would do this job no matter what happened. No matter what the pay was.”
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