A room at the Children's Hospital of San Antonio.
The opioid crisis is causing patients with chronic pain to go empty handed as medications are denied. Credit: Scott Ball / San Antonio Report

For more than two decades, Celeste Thompson, 57, a home care worker in Missoula, Mont., had not had regular contact with a doctor – no annual physicals and limited sick visits. 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 — which analysts estimate is worth nearly $100 billion annually and projected to grow rapidly – workers like Thompson often don’t have health insurance. Many home health agencies, 80% of which are for-profit, don’t offer coverage, or their employees don’t 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.

“It’s a social justice issue. We have a workforce that is the backbone of long-term [care] services, and they themselves don’t have coverage,” 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’s 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 an eye doctor in nine years – a problem because her job includes keeping track of patients’ pill bottles and making sure they take the right medications. “I had to use a magnifying glass to see small print,” 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 But the bill failed to get enough support in Congress and was withdrawn March 24.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 still a priority, 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 2010 to 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 and advocates for improved working conditions, in a March issue brief.

Most home care workers’ gains came from living in states that, like Montana, expanded Medicaid. But even with Obamacare in place, many home health workers – perhaps 1 in 5 – remain uninsured. By contrast, about 8.6% 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. “I would go to work sick, and that’s not good,” she said, noting that her clients are frail and elderly. “But I couldn’t afford to be off. I needed the money.”

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, “at least we were on a path” 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’s not so clear how these workers will access health care.

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

“My clients won’t be able to afford me. I can’t make a living. It’s a vicious cycle,” said Kim Thomas, 52, a home care worker in Durham, N.C. She makes $9.75 an hour and has 32 clients — 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’s 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’s not feasible, she said.

“We don’t have enough money at the end of the month to buy essential things, like deodorant,” she said. “We 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.”

KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

Kaiser Web reporting fellow Shefali Luthra has covered state politics, women’s health, and local implementation of the federal health reform for the Texas Tribune, the New York Times, and the Washington...