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Workers Who Give Care To The Homebound Often Can鈥檛 Afford To Get Their Own

Celeste Thompson, 57, a home care worker in Missoula, Mont., examines a pill bottle in her home. Thompson cares for her husband, and worries that if she loses her Medicaid coverage, she won't be able to afford to see a doctor. (Mike Albans for KHN)

For more than two decades, Celeste Thompson, 57, a home care worker in Missoula, Mont., had not had regular contact with a doctor 鈥 no annual physicals and limited sick visits.聽She also needed new glasses.

Like many others who work in the lower rungs of the health care system, she has worked hard to keep her clients healthy by feeding them, dressing them and helping them navigate chronic conditions.

But because of the low wages and the hourly structure of this industry 鈥 which analysts estimate is worth nearly $100 billion annually and projected to grow rapidly 鈥 workers like Thompson often don鈥檛 have health insurance. Many home health agencies,聽聽of which are for-profit, don鈥檛 offer coverage, or their employees don鈥檛 consistently clock enough hours to be eligible. They generally earn too much to qualify for public aid but too little to afford the cost of premiums.

鈥淚t鈥檚 a social justice issue. We have a workforce that is the backbone of long-term [care] services, and they themselves don鈥檛 have coverage,鈥 said Caitlin Connolly, who runs a campaign to increase home care wages at the National Employment Law Project, an advocacy organization.

In 2015, Montana opted in to the 2010 health law鈥檚 expansion of Medicaid, the state-federal low-income health insurance program. Thompson, who was making about $10 an hour, immediately signed up.

Her vision care was among the first things she focused on. She had not visited聽an eye doctor in nine years 鈥 a problem because her job includes keeping track of patients鈥 pill bottles and making sure they take the right medications. 鈥淚 had to use a magnifying glass to see small print,鈥 said Thompson, who now wears bifocals. Her doctor has since warned her she may need a stronger correction soon.

The Trump administration’s attempt at replacing the Affordable Care Act would have reined in Medicaid spending in states like Montana. But the bill failed to get enough support in Congress and was withdrawn March 24. Many Republicans say repeal is聽,聽and Health and Human Services Secretary Tom Price could change key regulations affecting the current law right now, without Congress.

Thompson is part of a large population of home-based caregivers who might be affected by such changes. From聽2010 to聽2014, about half a million of these workers gained new health insurance through Obamacare, estimates PHI, a New York-based nonprofit that researches this slice of the labor force聽and advocates for improved working conditions, in a March聽.

Thompson worries if her Medicaid coverage is taken away that it鈥檚 not just her insurance at risk, but also her livelihood. Her medical history puts her at high risk of endometrial cancer and her doctor recommends screenings twice a year. But without insurance, that鈥檚 not feasible. (Mike Albans for KHN)

Most home care workers鈥 gains came from living in states that, like Montana, expanded Medicaid. But even with Obamacare in place, many home health workers 鈥 perhaps 1聽in 5聽鈥 remain uninsured. By contrast, about 8.6 percent聽of all Americans lack coverage.

Even catching a cold is risky. Before Thompson got Medicaid, a sinus infection represented an unplanned expense. Seeing a doctor meant forgoing groceries. She would take over-the-counter pills and hope to get better.聽鈥淚 would go to work sick, and that鈥檚 not good,鈥 she said, noting that her clients are frail and elderly. 鈥淏ut I couldn鈥檛 afford to be off. I needed the money.鈥

Many Republicans have long favored proposals to reduce federal costs associated with this state-federal low-income insurance program, saying that shifting funding from a per-capita basis to block grants to states would make the system more efficient.

But many advocates for these workers take a different view, and the current air of uncertainty adds an extra layer of concern. Under the 2010 law, 鈥渁t least we were on a path鈥 to addressing coverage and access concerns, said Elly Kugler, the federal policy director at the National Domestic Workers Alliance, a coalition that represents home care providers. If it goes away, she said, it鈥檚 not so clear how these workers will access health care.

We have a workforce that is the backbone of long-term [care] services, and they themselves don鈥檛 have coverage.

Caitlin Connolly

Currently, home care workers on average earn less than聽$20,000 per year. The federal government only recently ruled they qualify for protections. And there鈥檚 another rub: Most of the money paying for long-term home care comes from Medicaid and Medicare,聽. If either of those sources is聽squeezed, 鈥渢hat will translate to hours cut,鈥 Connolly said 鈥 because people who need home care will also have fewer resources to pay for these services.

鈥淢y clients won鈥檛 be able to afford me. I can鈥檛 make a living. It鈥檚 a vicious cycle,鈥 said Kim Thomas, 52, a home care worker in Durham, N.C. She makes $9.75 an hour and has 32 clients 鈥 one of whom is almost fully paralyzed and needs help eating, dressing and moving. Her days start at 5:30 a.m. To make ends meet, she works nights at the local hospital. Thomas is diabetic.

For Thompson in Montana, the concern is similar. If Medicaid is revised or the health law repealed, she said, it鈥檚 not just her insurance at risk but her livelihood. Her medical history puts her at high risk of endometrial cancer, and her doctor recommends screenings twice a year. But without insurance, that鈥檚 not feasible, she said.

鈥淲e don鈥檛 have enough money at the end of the month to buy essential things, like deodorant,鈥 she said. 鈥淲e go to the food bank four times a month. Without Medicaid, it would be really hard on [our family], trying to come up with the money to go the doctor.鈥

KHN鈥檚 coverage of aging and long-term care issues is supported by .

Related Topics

Insurance Medicaid The Health Law