I’ve spent a lot of time with home care workers in the past two years, and I know they tend to be overwhelmingly low-income, female and minority — half, in fact, earn so little that they must rely on food stamps, and most either aren’t offered health insurance or don’t earn enough to be able to afford it even if it is offered. I also know that the good ones tend to view their work as a calling.
What I didn’t know, though, until I read about Evelyn is this: Due to a 1975 loophole in a Labor Department regulation, the nation’s 1.4 million home care workers are exempt from overtime and minimum wage requirement protections outlined in the 1938 Fair Labor Standards Act.
Evelyn tried to change all that in 2001 when, working for a Long Island home care company, she sued her agency in a case that went all the way to the U.S. Supreme Court. In 2003, the court sided with the Bush and New York City mayor Michael Bloomberg administrations, both of which filed friend-of-court briefs saying that paying the aides more would bankrupt companies and ultimately lead to greater institutionalization of seniors. Unlike the Lily Ledbetter case, this one didn’t rally most women’s groups.
Because she didn’t have health insurance, Evelyn put off going to the doctor until she was 65 and qualified for Medicare. By that time, her kidneys were failing. She died last August due to complications from a serious bedsore, the kind she had once been so good at tending. Having been denied justice by the court, her son explained, she had not been able to afford a home care worker in her final days.
Home care is a growing industry in a rapidly aging society, with expectations for the employment of 2 million home care workers by 2014. (The Labor Department says the only faster growing occupation is systems and data analysts.)
We don’t need data analysts to tell us that the United States is headed toward a long-term care catastrophe if it doesn’t give more credence to the work of these women — and the patients they care for — as it cobbles together health-care reform. (For more information, check out a very recent article in the journal Health Affairs on the late Sen. Ted Kennedy’s efforts to weave long-term care into current legislation.)
Would that Florence Nightingale have been more prescient when she wrote in 1867: “My view you know, is that the ultimate destination of all nursing is the nursing of the sick in their own homes. . . . I look to the abolition of all [institutions such as hospitals and nursing facilities]. . . . But no use to talk about the year 2000.”