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Too Sick to Care: Direct-Care Workers in the Coverage Gap

Imagine arranging care for your elderly mother who has the beginnings of dementia. The home care aide, who has established a warm and caring relationship with her, hurts her back while helping your mother out of the shower. Because the home care aide has no health coverage, she doesn’t go to the doctor. She misses a few days of work, leaving you with a substitute sent by the agency. This is confusing to your mother, who doesn’t trust the new aide. Then, as that relationship is improving, the original aide returns but her pain grows worse. Just as you think the situation is stable—your mother is in the hands of an experienced aide whom she trusts—the aide quits because she fears her pain is endangering her clients. You have to start all over again.

This scenario is common. Hardworking direct-care workers give up their jobs because of untreated injuries and chronic illnesses that could have been managed if the worker had access to health coverage. Our new analysis, “Too Sick to Care”, finds that nearly 300,000 of America’s paid caregivers—nursing assistants, home health aides and personal care aides who provide care and assistance to millions of our nation’s elders and people with disabilities—have been denied coverage because they live in one of the 21 states, mostly across the deep South and Midwest, that have rejected federal funds from the Affordable Care Act for Medicaid expansion.

These workers fall into the “coverage gap”—that is, without expansion they are ineligible for Medicaid coverage but earn incomes below the minimum threshold (100 percent of the federal poverty line or $24,250 for a family of four) required to receive tax credits to buy coverage on a state market exchange.

Solving this coverage issue for direct-care workers is significant not only for them but for all of us.

With growing numbers of elders and people with disabilities, the demand for direct-care workers—particularly those who care for clients in their homes—is skyrocketing. The two home care occupations—home health aide and personal care aide—will create more new jobs between 2012 and 2022 than any other occupation.

If a large percentage of these workers are unable to access health coverage, we will find it increasingly challenging to find the care we need for ourselves or our loved ones. For people living with disabilities, this isn’t simply an inconvenience, it is a barrier to exercising their civil rights. On the 25th anniversary of the Americans with Disabilities Act, it is important to remember that living independently in the community—a right that people have fought for, for decades—requires access to a robust and stable workforce.


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But long-term care employers, particularly those who provide supports in private homes, are already reporting that they cannot find or retain sufficient numbers of workers to meet the demand for services. It’s not surprising: average wages are less than $10 per hour; injury rates are higher than in almost all other occupations; and employer-sponsored health coverage is uncommon. The reality is that one in two workers leave the job each year. This turnover is highly disruptive for clients and undermines the overall quality of care.

So what can we do to ensure that direct care workers don’t go without health coverage themselves?

First, and foremost, we need to continue to advocate for states to expand Medicaid coverage. Direct-care workers are 32 percent less likely than other workers to have employer-sponsored coverage, making Medicaid an important option.  Long-term care employers who depend on Medicaid reimbursement for the majority of their revenues often can’t afford to offer health coverage. For example, in North Carolina, the state pays only $13.88 per hour for personal care services. The average wage for a personal care aide is $9.18, making it extremely difficult for the provider to also provide health coverage.

One solution would be to provide a “differential reimbursement rate” for high-road employers who make affordable health coverage for their workers a priority. Under this scenario, states would pay providers an additional amount per hour of service provided. Recognizing the recruitment challenges in their state, the Maine legislature recently increased Medicaid reimbursement to home care providers from $15 to $25 per hour. The legislation is essentially a “wage pass-through.” Almost the entire increase (85 percent) must be used to increase direct-care worker wages and benefits, including health care coverage, as opposed to being used to fund administrative or other agency expenses.

Finally, about 25 percent of direct-care workers are immigrants. Unfortunately, lawfully residing immigrants who have lived in the US for less than five years cannot access Medicaid coverage for themselves or their children, although 14 states extend some health benefits through state programs. Undocumented immigrants are not eligible for either Medicaid coverage or federal subsidies. Recently, the California State Senate passed a bill to offer coverage to undocumented immigrants in their state. A better solution would be for Congress to create a path to citizenship for direct-care workers, thereby expanding opportunities and improving wages and benefits, and growing and stabilizing the workforce.

As Rosalynn Carter once said, “You have either been a caregiver, you are a caregiver, you will be a caregiver, or someone will care for you.” Acknowledging this universal reality, we must expand coverage to all direct-care workers so that they can continue to provide quality care for those who need it while also caring for themselves and their families.

Jodi Sturgeon

Jodi Sturgeon is the president of PHI (, a national nonprofit that fosters dignity, respect, and independence– for all who receive care, and all who provide it. The nation’s leading authority on the direct-care workforce, PHI promotes quality direct-care jobs as the foundation for quality care. 

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