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The Caregivers' Dilemma 

click to enlarge After her home care shift, Kelley Erving, Bloomington, helps care for her mother. - MARK A. LEE
  • After her home care shift, Kelley Erving, Bloomington, helps care for her mother.
  • Mark A. Lee

When Kelley Erving was young, her grandmother was aging and had grown unable to care for herself. Erving and her mother both had jobs outside the home, so a home care worker named Lateisha helped Erving's grandmother. Lateisha performed tasks like bathing Erving's grandmother, feeding her, and helping her with her medications.

The total was much greater than the sum of the parts. "Lateisha was like family to us," Erving recalls. "She used to climb up in the bed with my grandma, watch TV with her, bring her stuff. She would do anything for her. She was a real comfort to my grandmother — my grandmother was so happy when that girl was coming over.

"That's me. I'm that same person now. I am there doing what I do as a home care worker, and I like seeing people's faces light up when I walk in the door. They say, 'Girl, let me tell you what happened last night.' Once you have people who have entered your heart, that makes you good at your job."

It is quite a job. When the Bloomington-based Erving arrives at her client's home in the morning, she greets the woman and starts preparing a sponge bath. Erving cleans her client as much as possible while the woman sits in her wheelchair. Erving then squats, leans, and helps the woman stand up and brace herself against an end table so Erving can wash the rest of her body.

"Once you learn how to use body mechanics, you don't get hurt — unless you have to jerk out of position to help prevent a client from falling," Erving says. Following the morning bath, Erving helps the client get dressed, sets out her morning medicine, prepares the day's meals, and cleans up around the house. Then Erving is off, headed to two more clients' homes to perform similar duties. "The clients are amazing, and as long as you keep them happy, they'll make sure you are happy too."

Erving is part of a business that is already huge and quickly getting bigger. There are an estimated 2.5 million home attendants and aides in the U.S. already, and the aging of the Baby Boom generation is making the profession one of the fastest growing job categories. The U.S. home care industry collected more than $84 billion in revenue in 2009. A recent report from the Governor's Commission on Long Term Caregivers looked at the demographics of the aging Indiana population and concluded, "The growing need for long-term care represents an amazingly stable source of jobs long into the future."

Yet those jobs are usually not very good ones. Like many home care workers, Erving provides health care for others but cannot afford medical treatment for herself. Two winters ago, the 33-year-old Erving picked up the flu from her two young sons. The virus developed into a sinus infection. Or at least that is what Erving thinks happened, because she could not afford to go to a doctor or get antibiotic medication. The health insurance program offered by her employer is prohibitively expensive yet still provides limited coverage, so Erving and most of her colleagues go without. When she is ill, Erving cannot go to work.

"If I would have brought a virus to one of my clients that is on oxygen and has COPD (chronic obstructive pulmonary disease), then that is pneumonia right there, and it could kill them," she says. Her job provides no sick leave, so when she missed work, Erving missed her pay. She cut back on food and gas, but still fell behind on the bills. The family had their electricity cut off for two weeks.

click to enlarge Health-care worker Nichole Paschall with her twin girls, Nafia and Efia, both 13. - MARK A. LEE
  • Health-care worker Nichole Paschall with her twin girls, Nafia and Efia, both 13.
  • Mark A. Lee

Low wages and no rights

Nichole Paschal has faced similar struggles. A native of Fort Wayne, Paschal works as many as seven days a week as a certified nursing assistant for an Indianapolis-area home care agency. It took Paschal awhile to come to terms with the gritty challenges of the job. "At first, I thought it was gross to wipe rear ends and clean up vomit. Then I started realizing I was really providing help, and that I really do like caring for people," she says. "You never know when you'll need this kind of care, so you want to treat people the way you would like to be treated. Wiping people, changing people — that does not bother me anymore."

But Paschal discovered the job comes with other challenges. She has high blood pressure that caused her to be hospitalized in 2010, but she has no health coverage. Despite 16 years of experience and a recent raise, Paschal earns only $10.45 per hour. She can't fill her current prescription and still make ends meet for her twin 12-year-old daughters.

Erving makes a similar wage. Like most home care workers, Erving struggles to get full-time hours by shuttling between short two- or three-hour shifts at multiple clients' homes. The U.S. Bureau of Labor Statistics reports the average wage of home health aides in Indiana to be just over $10 per hour, with an average annual income of $21,030, barely more than the federal poverty level for a family of three. Not coincidentally, nearly 90 percent of home care workers are women, who are vastly over-represented in low-wage service-sector positions.

In real terms, those low wages translate into skipping doctor visits and not filling prescriptions, cutting back on groceries so that the kids can get school clothes, and missed time with your family because you are picking up extra hours caring for someone else. "How can we work effectively for our clients when we are getting so little pay that we are not sure that the rent is paid or food is put on the table?" Paschal asks. "People caring for others should get a good steady rate of pay. When you have someone's life in your hands, your pay should not be so low."

One of the reasons home care workers struggle with low wages and limited benefits is that they are excluded from some of the most basic protections of U.S. labor law. Home care aides and attendants are not protected by federal minimum wage and overtime laws because Congress decades ago placed their work in the same category as babysitters. Yet, if those same workers performed the same services in a nursing home setting — Erving and Paschal, like many home care workers, have nursing home experience — all the terms of the Fair Labor Standards Act would apply. In December 2011, President Barack Obama proposed a change to U.S. Department of Labor rules that would bring home care workers under the full protection of workplace laws. But over a year and a half later, no permanent rule change has been enacted.

Home care is a difficult industry to unionize. Solidarity is hard to come by when workers have little interaction with each other at their wide-ranging workplaces. But home care workers in several states have come together in unions to bargain for the terms of employment the law does not guarantee for them.

In California, for example, the Service Employees International Union (SEIU) represents 180,000 home care and nursing home workers, and has partnered with disability advocacy groups and other unions to lobby to protect home care funding at the state level. In Illinois, unionized home care workers have bargained for access to health care.

SEIU has a limited membership in Indiana so far, but union home care workers here do get overtime pay, seniority protection, and can only be disciplined for just cause, all protections that go beyond state law. (Paschal once was fired from a non-unionized care facility for speaking up about the treatment of residents.)

Some of the most vocal advocates for home care workers are their clients. Linda Muckway, a 55-year-old Muncie resident who has cerebral palsy, is pleased with her home care workers and their agency. Muckway says she would not be able to live independently without home care. But she and other advocates express concern about the overall turnover rate in the industry, which some estimates say is as high as 60 percent annually. "You would not have as much turnover if they were paid more," Muckway says. The numbers back her up. A significant wage increase for home care workers in San Francisco County, California, led to a 31 percent decrease in worker-initiated turnover.

click to enlarge Kay Romaine helps get Linda Muckway ready in the mornings. - MARK A. LEE
  • Kay Romaine helps get Linda Muckway ready in the mornings.
  • Mark A. Lee

Home care vs. nursing homes

Advocates like Muckway, the SEIU, and consumer-focused organizations like the Indiana Home Care Task Force say that changes to Indiana law could benefit home care workers. Health care for seniors and persons with disabilities is the very opposite of a free market, with services largely funded by government programs like Medicaid. So lawmakers hold the power to readily adopt changes that can make a huge impact on the field. For example, some home care workers get paid little more than half what their agencies receive in government reimbursement for the care provided. Indiana could require that home health agencies spend a fixed amount of its government reimbursement on worker pay and benefits, a provision that has boosted worker salaries in states like Illinois. And some states have established provider networks that allow home care workers to receive health benefits through the state government.

Currently, though, Indiana officials use their power mostly to provide benefits to the nursing home industry. "Indiana has far too many people in nursing homes who could be in home-based care and would rather be in home-based care, which is more cost-effective, too," says John Cardwell of the Generations Project and the Indiana Home Care Task Force. Indiana does provide home and community-based services like the CHOICE (Community and Home Options to Institutional Care for Elderly and Disabled) program and a Medicaid waiver program to support home-based care. But, as of 2011, Indiana was 48th in the nation in funding such options, and these programs have thousands of people on their waiting lists.

Home care providers say they are not surprised by the demand. "My clients don't want to go to nursing homes, and I don't blame them," Erving says. "Sometimes my clients are crying because it hurts to turn over, and you just need to hold their hand. In a nursing home, they are not going to have time to hold your hand. They are going to throw you over whether it hurts or not, clean you, and then they are out of there."

The Generations Project hosted a multi-year statewide roundtable discussion on long term care in Indiana and issued its findings in 2011. The report concluded that home care is both the preferred and most cost-effective form of care, saying that "nursing home care is simply the wrong model for virtually anyone needing long term care services." Advocates like Cardwell and Muckway say that Indiana is missing the opportunity to sharply reduce its Medicaid spending by expanding home care options. The state of Washington, which emphasizes home care options, has a population slightly larger than Indiana's, but nearly two-thirds fewer nursing home residents. In the 2013 session of the Indiana General Assembly, representatives Tom Saunders (R-Lewisville) and Ron Bacon (R-Boonville) proposed to expand home care options in part by funding the growth with Medicaid savings created by avoiding nursing home costs. The bill did not receive a hearing.

Home care workers like Erving and Paschal would like to see the importance of their jobs affirmed by government priorities. But they do not need a lawmaker to tell them their work has value. "Everybody that breathes is at some point going to die," Erving says. "It's sad to say it like that, but it is the truth. The normal way is either getting sick by some type of disease or getting older, and your body starts to deteriorate. And when that happens, you need help. Period. There is no way around it.

"The people who are not thinking about that are going to make it to that place regardless. So our job is to give these people the best quality of life possible. You can't do home care just because it's a job. You have to have your heart in it."

Paschal agrees. But she also considers going back to school for accounting or starting her own business one day. She wishes those plans were less attractive options, because she cares deeply for her clients, and feels that providing home care is part of her better self.

"It is a wonderful field," she says. "But the pay is just awful."

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