CONTRIBUTORS

A common story: Caring for others without health care for oneself

Posted Oct. 25, 2013, at 12:14 p.m.
George Danby

The facts on home health care workers

  • The occupations of personal care worker and home health aide are projected to be the first and second fastest-growing jobs in the country. They are projected to increase 70 percent and 69 percent, respectively, between 2010 and 2020 according to the Bureau of Labor Statistics.
  • Women fill about 90 percent of the jobs.
  • The work pays an average of $10 per hour, both nationally and in Maine — or about $20,000 per year.
  • About one third (31 percent) of home care workers do not have health insurance themselves.
  • After Gov. Paul LePage vetoed a bill to expand Medicaid, many of the 13,000 personal care workers, home health aides and independent providers working through Alpha One Attendant Services in Maine will remain uninsured.

Editor’s note: In this monthly series, the authors will introduce you to people who are apt to be your neighbors, are struggling to make ends meet and have been affected by specific state policies. To share your story, write to Sandy.Butler@umit.maine.edu or call 581-2382.

Helen, 45, works seven days a week caring for other people. While she plays an essential role in our health care system as a home care provider for people with chronic health conditions, she herself lacks health insurance.

She earns $9.25 an hour and works irregular hours ranging from 20 to 40 each week. Helen, like many other hardworking Maine people, would have been eligible to receive health insurance through MaineCare — what Medicaid is called in Maine — if Gov. Paul LePage had not vetoed the bill to expand Medicaid this past June.

Helen, who lives in Whitefield, did not wish to use her real name for fear she would lose the work she needs to survive.

Helen has worked outside the home for the past 14 years. When her three children were young, she stayed home to care for them — one of whom had severe developmental delays. Helen is unable to afford health insurance, so she has been uninsured for 10 years.

For many years, Helen has had pelvic and hip pain — a condition that is exacerbated by the work she does. She has not received a straightforward diagnosis despite the many health care providers she has seen over the years.

“I think a lot of my bills that have racked up are because of that. I’ve seen a lot of different specialists,” she said.

As a result, Helen has mounting unpaid medical bills that have negatively affected her credit rating, and she regularly receives many unwanted calls from a collection agency.

She said, “It is really hard not to have health insurance. It really is. It is stressful to have a collection agency calling me all the time, all the time. I tell them I’ll try to send in something, but if I can’t do it, then I just can’t do it.”

When Helen was in her early 30s, she became certified as a personal support specialist, qualifying her to do personal care work for people in their homes — one of the fastest growing occupations both in Maine and nationally. The work has flexible, though often erratic, hours and ironically rarely comes with health insurance.

Nationally, 31 percent of personal care workers did not have health insurance in 2010. Thanks to the Affordable Care Act, however, personal care workers who live in one of the 28 states that have voted to accept federal funds to extend Medicaid coverage to the working poor will finally have access to affordable health insurance this coming January.

Unfortunately, Maine’s governor vetoed the bill that would have provided affordable health insurance to Helen and others like her. As a result Helen, like so many other uninsured individuals, hesitates to attend to her health needs because of the cost. When she spoke with us, she had had a sinus infection for months, for which she had not seen a doctor.

As she adamantly said, “I don’t want to rack up any more bills. So you have a choice: Either you go to the doctor and find out what is going on, or you don’t.”

Helen will continue to face her health issues without coverage.

Helen struggles to make ends meet and is grateful that her boyfriend helps pay for many of their living expenses. Her job requires a reliable car, and her car payment takes a hefty chunk out of her take-home pay each month.

When asked whether she thought she would be able to pay a monthly premium for insurance available through the marketplaces, she was doubtful, saying, “I have all that I can do to make that [car] payment. I have to have a decent vehicle because I do a lot of travel for work, and I struggle to do my monthly car payments.”

Helen wishes she had a job with health benefits and that she didn’t need to work seven days a week — a schedule that is not unusual for home care workers, who provide daily care to their clients even if their work is part time. She knows, however, that her options are limited due mostly to her lack of a high school diploma.

But she also knows she needs to work, “because, when I get older, I’m not going to have any income if I don’t.”

Helen was aware of the debate in Augusta this past spring regarding the expansion of MaineCare and was disappointed that the governor did not sign the bill that would have allowed her to be covered.

She laments, “He is hurting a lot of people, I think.”

And so, for the foreseeable future, like many home care workers in Maine, Helen will continue to provide health care to others while not having health insurance herself. The irony of her situation is a shameful reflection on our state’s policy choices.

Sandy Butler is professor of social work and is the graduate program coordinator in the School of Social Work at the University of Maine. Luisa S. Deprez is professor and department chair of sociology and women and gender studies at the University of Southern Maine. They are members of the Maine Regional Network, part of the Scholars Strategy Network, which brings together scholars across the country to address public challenges and their policy implications.

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