Home care worker Joyce Rena Bumbray-Graves spends her days lifting, bathing, and feeding two women unable to care for themselves. One of them is her adopted sister, Leah, who is forty years old, has spina bifida and scoliosis, and uses a wheelchair. The other is Bumbray-Graves’s great-niece, Lisa. Born with severe scoliosis, cerebral palsy, and developmental disabilities, Lisa is thirty-two years old, cannot speak or feed herself, and requires around-the-clock care. After Bumbray-Graves’s parents—who had been caring for Lisa and Leah—died in 2016 and 2017, both Lisa and Leah came to live with her in Woodbridge, Virginia, because she refused to let them end up in an institution.
“I wanted to keep them with family,” she tells The Progressive. She earns a paycheck for her care work through Virginia’s Medicaid program, which funds home care for people with disabilities.
At sixty-three years old, Bumbray-Graves manages her own health issues, including chronic pain from degenerative discs in her spine, a blood thinner she cannot go three days without after surviving three pulmonary embolisms, and until it became unaffordable, a daily inhaler to help her breathe. On December 31, 2025, when Congress allowed enhanced Affordable Care Act (ACA) tax credits to expire, she says her monthly insurance premium jumped from $544 to more than $1,300, a sum equal to her entire paycheck for two weeks of work. Unable to pay the inflated cost, she dropped her coverage. Her husband, a freight driver who broke his arm in mid-December, dropped his, too. Now she provides health care for a living but cannot access it for herself.
“I work in health care and I can’t afford health insurance,” she testified before the House Budget Committee on January 21. “Every day, I worry that if I get hurt or sick, I will have to suck it up and keep working in pain.”
Bumbray-Graves is one of about 3.2 million home health and personal care aides working in the United States, the single largest occupation in the country as of May 2024. They bathe, dress, and feed elderly and disabled people, manage medications, and provide the daily support that allows vulnerable people to live in their homes rather than in nursing facilities. According to data from the Paraprofessional Healthcare Institute, the median hourly wage for these workers is $16.77. However, home care workers are not paid for all the time spent traveling between clients; they may spend two hours with one client, then drive or take a bus to the next; and when a client is hospitalized, those hours simply vanish. Because of this inconsistency, workers rarely get a full forty hours of paid work each week, and the median annual wage falls to about $22,000. More than half lack access to employer-provided health insurance, which makes them the intended recipients of the ACA marketplace, and the first to be priced out when subsidies disappear.
Leslie Frane, executive vice president of Service Employees International Union (SEIU), the nation’s largest healthcare union, describes the current policy landscape as a “triple blow” for home care workers. The first blow is the loss of health coverage as Congress rescinds ACA subsidies. The second is reduced income if Medicaid cuts force states to slash budgets for programs like the one through which Bumbray-Graves earns her income. And the third is diminished care for clients as approved hours are scaled back.
“We have the really morally unacceptable situation where people work, in many cases, more than forty hours a week, providing quality care for others, and can’t provide quality care for themselves,” Frane says.
The enhanced premium tax credits that lapsed at the end of last year had made coverage affordable for millions of low- and middle-income Americans by capping the amount they paid for premiums. Under those rules, no one paid more than 8.5 percent of their income for a benchmark plan, and many lower-income enrollees paid nothing at all. The federal government covered the rest. When Congress allowed the credits to expire, that subsidy shrank dramatically, and the full cost of premiums shifted to workers like Bumbray-Graves. Combined with proposed Medicaid cuts, Frane says some twenty million people stand to lose health coverage, according to the Congressional Budget Office (CBO)—roughly sixteen million from Medicaid reductions and another five to seven million from the expiration of enhanced ACA credits.
When she first saw the new premium, Bumbray-Graves phoned her daughter in a panic, telling her, “I gotta find something quick.” But she has not been able to find a health care plan she can afford, and she knows she cannot help anybody if she cannot help herself. Yet Leah and Lisa still need to be fed, bathed, and cared for, whether she has insurance or not.
Her mornings begin with preparing meals, changing diapers, and teaching Leah to read and write using a lesson plan she designed herself. By 7 p.m., when the daytime aide leaves, she takes over care for Lisa.
“I go to bed in pain every night,” Bumbray-Graves says. “My husband, he’s a wonderful man, and he will rub my back.” And Leah can tell when she is hurting, too. “She knows,” Bumbray-Graves explains. “She’ll say, ‘I know that your back is hurting.’ ”
According to the KFF, formerly called the Kaiser Family Foundation, average marketplace premium payments are estimated to more than double in 2026. The Urban Institute projects that 7.3 million people will lose ACA coverage this year, with 4.8 million becoming uninsured.
Two or three times a year, Bumbray-Graves used to receive injections that kept her spine from stiffening up. The inhaler her doctor prescribed costs more than $300 out of pocket, nearly $200 even with a GoodRx coupon which uninsured people can access to help lower medication prices. Now she goes without both. “I feel like it has taken a quality of my life from me, because I know the medication he prescribed me would help a lot.”
When asked if she worries about getting sick, she doesn’t pause. “If I cannot work for her, they would have to bring someone else in,” she says of Leah. But that would be disruptive for both Leah and Lisa. “I’m the only family that they really are attached to and see every day.”
Under Title XIX of the Social Security Act—which details the structure of Medicaid services—home care is classified as an “optional” service, which means it is among the first programs states cut when federal reimbursements shrink. Frane says this pattern is visible in every previous budget crisis: states facing shortfalls reduce approved hours for home care clients, freeze or cut worker pay, or both. For those already earning close to the minimum wage, there is little room to absorb the blow. The Department of Labor has also moved to rescind an Obama-era rule that extended minimum wage and overtime protections to home care workers, a rollback Frane ties directly to the workforce’s racial demography. “There is no question that the reason why home care workers have historically been excluded from basic labor protections is because the home care workforce has been majority people of color for a very long time,” she said. “The idea that people who provide compassionate and skilled care for our most vulnerable residents deserve less than minimum wage is immoral.”
In Virginia, insurers requested average rate increases of 20 percent or higher for 2026, citing the elimination of enhanced subsidies as a driving factor. For home care workers earning median wages who can’t afford to pay these higher insurance rates, that increase means crossing their fingers that they don’t need to see a doctor.
Even without her medications, Bumbray-Graves has learned “how to channel the aches and pains” so she can get through each day. She wears a mask when she leaves the house and limits her outings, afraid of catching the flu or COVID-19 without insurance to cover a hospital visit. With Lisa’s immune system compromised, illness presents even more of a risk. “I definitely worry about any of us getting sick, for real,” Bumbray-Graves says.
Her husband’s broken arm kept him out of work starting December 12. He also has to manage sleep apnea and diabetes, making their lack of coverage all the more precarious. Without insurance, a visit to have his cast removed cost $300 upfront and another $300 in unexpected charges. “We can’t afford that,” she says. He finally got insurance through his job in February, and was able to get the cast replaced with a plastic brace. But when they looked into adding Rena to his plan, the cost was even higher than what she had been paying on her own. She is still searching for coverage while paying her medical expenses out of pocket.
Meanwhile, the women she cares for remain fully covered through Medicaid, which pays for their nutritional formula, the aides who assist with Lisa’s care, and the necessities their conditions require. Lisa, who cannot chew or swallow solid food, drinks six Ensure shakes a day through a nursing bottle, which costs about $13 for a pack of six. Both women wear diapers and require changing pads and ointments, all of which Medicaid provides monthly. Without it, the cost would be debilitating for a family already stretched impossibly thin. And because Medicaid also pays Bumbray-Graves her salary, further cuts to the program would threaten not only her income but her ability to care for Leah and Lisa at all.
But while caregivers like her depend on that funding, one-third of home care workers in the United States are immigrants, and the revocation of Temporary Protected Status for workers from several countries is compounding the industry-wide crisis.
“The intersection of the Trump Administration’s immigration policies with the Medicaid cuts and the failure to extend the enhanced premium tax credits is creating a perfect storm of crisis in a long-term care system that, frankly, wasn’t working well even before these blows,” Frane says. When the workforce shrinks, families searching for a caregiver for an aging parent or a disabled child face longer waits and fewer options.
On January 21, the same day Bumbray-Graves testified in Washington, SEIU Virginia 512, the union she belongs to, gathered at the state Capitol to push for collective bargaining rights for home care workers. Both chambers of the Virginia legislature have since passed versions of a collective bargaining bill (HB 1263 in the state house, SB 378 in the state senate), though the senate version removed home care workers over fiscal concerns. The two bills must now be reconciled before reaching Governor Abigail Spanberger’s desk. Athena Jones, executive board chair of the union’s home care chapter, spoke frankly at the rally about how undervalued their work remains. “Home care workers are often forgotten,” she said to the crowd. “How do I know? The wages, lack of proper healthcare.”
“I don’t think people realize how up close and personal it is,” Bumbray-Graves says of the work. “Almost everybody will need something someday, if you live long enough.”
That understanding is what drives her advocacy for better conditions for home care workers. She joined the union years ago, but did not get involved until 2017, when she took in Leah and Lisa. At the invitation of a union organizer, she attended a lobbying event in Richmond. “When I went, and I saw all those people who were doing what I do, I was amazed,” she recalls. “Once you get into this union, you’re never by yourself.” From there, she began attending union calls, speaking at events, and eventually testifying before Congress. “No one can tell your story better than you can tell your own story. And I wanted my story to be heard because this is not just my story.”
At the Budget Committee hearing, Representative Jodey Arrington, Republican of Texas, attempted to redirect the conversation toward fraud and abuse in federal programs—but Bumbray-Graves refused to take the bait. “I’m not here for that,” she told him. “I’m here for my situation and me not having health care.”
In her testimony, Bumbray-Graves made a direct appeal to lawmakers. “I want you, as members of the Congress, to see me and the people I care for. You all can vote yay or nay or whatever. You’ll be fine. But what about us?”
On January 8, the House passed a three-year extension of the enhanced tax credits with bipartisan support, but the Senate has not followed suit. Until then, Bumbray-Graves continues to care for Leah and Lisa without the medications her doctors prescribed, managing her pain with over-the-counter creams and her husband’s help, hoping she does not get sick in the two years until she turns sixty-five and qualifies for Medicare.
“I will weather through the pain the best I can,” she says. Every year, she takes Leah and Lisa on vacation, and she doesn’t want that to end. But without insurance, something has to give.
“I just do what I have to do,” she says. “Because that’s what you do when you have family, or someone you take care of that you care about.”