Toni Siegel and her husband, Peter Sturtevant, had been married for 29 years when Peter, a former CBS television executive, was diagnosed with an unusually aggressive form of Parkinson’s disease.
Within months of the diagnosis, their lives were upended. They not only had to deal with Peter’s declining health, but also had to hire a 24-hour-a-day caregiver so that he could remain at home.
Siegel and Sturtevant tell their story in “CARE,” a new film that showcases the growing care crisis in the United States. Like others interviewed in the documentary (directed by Deirdre Fishel), the pair express tremendous gratitude toward their home health aide—a woman who lifts Peter in and out of bed; gets him to and from the bathroom; helps him bathe, dress, and eat; takes him to appointments; and provides companionship when Siegel is at work.
They note that without her, they could not function.
At the same time, they express their utter frustration at the lack of government support for policies that support the aging and disabled.
As heartbreaking as their situation is, they are far from alone.
Siegel also reveals that in just 12 months, she and Sturtevant spent a sum equivalent to four years of her earnings on Peter’s round-the-clock care. As the population ages—demographers estimate that by 2030 at least 20 percent of Americans will be aged 65 or older—this is likely to become an increasingly common tale.
Parents of young children will recognize some of the issues the film brings up: the squeeze of paying a caregiver a living wage, only to have a short grace period before needing to finance care for aging or disabled relatives.
These include MacArthur Award recipient Ai-jen Poo, author of The Age of Dignity, who reminds viewers that even as caregiving represents one of the fastest growing economic sectors, those who work in these fields—typically immigrant women of color–often live in poverty and lack the legal protections afforded to other workers.
In fact, almost a quarter of of paid caregivers earn an average wage of $10.21 an hour according to a 2013 report compiled by the Economic Policy Institute.
Worse, the EPI researchers learned that just 12.2 percent of the caregivers interviewed had health insurance, and just 7 percent had pensions.
“CARE” addresses this dual reality: Recipients of care are going broke paying for care. At the same time, many caregivers are indigent, lacking permanent shelter or living doubled up or in precarious situations.
In fact, one woman in the film resides in a homeless shelter, and another confesses that she and her children would be homeless were it not for her fiancé–because they do not earn enough to secure housing within commuting distance to their jobs.
Zahara Zahav, a community organizer with the New York Caring Majority Campaign of Jews for Racial and Economic Justice (JFREJ), is one of many activists working to improve conditions for people on both sides of the caring continuum.
JFREJ began working to better conditions for domestic workers back in 2002—and helped organize nannies, cleaners, health aides and their employers in support of a New York State Domestic Workers’ Bill of Rights—which was the first such bill to pass.
The Bill of Rights has since become law in California, Connecticut, Hawaii, Illinois, Massachusetts, and Oregon.
Hand in Hand: The Domestic Employers Network, a group initially connected to JFREJ, was later involved in creating Best Practices for those who employ people in their homes. Among their recommendations:
-Pay a living wage.
-Make all workplace expectations and obligations explicit.
-Provide paid sick time and vacations.
-Develop a consistent schedule.
-Make sure that changes in payment or duties are clearly articulated.
-Pay for health insurance, Workers Compensation, and other benefits for full-time employees.
“Over the past 15 years, our vision has shifted,” Zahav told Kveller. “We are now looking at one of the fastest-growing sectors of healthcare, home-based care. We see the issue of care as a real opportunity to do bipartisan organizing since it touches virtually everyone. We think we can break through the political polarizations that exist elsewhere.”
What’s more, she continues, talking about care allows people to discuss what they believe our society’s responsibility should be in providing assistance to elders and people with disabilities.
“It’s about what we value. The issue opens up the possibility of returning to a different, less individualistic, vision of communities,” she says.
It’s a huge mission—but Zahav is confident that headway is possible.
The New York State Caring Majority Campaign is a coalition that brings together groups including A Better Balance, The National Domestic Workers Alliance, The National Employment Law Project, and Hand in Hand. Its agenda involves holding on to what we have—preserving Medicaid and the Affordable Care Act, for example—as well as treading new ground to advocate expanding Medicare to cover home care and other long-term services.
This, she says, will allow people to “age in place,” staying in their homes rather than being forced into institutions, something a full 90 percent of people say they want.
Personal stories like those offered in Deirdre Fishel’s “CARE“ are key, Zahav adds, which is why JFREJ held a public screening of the film in early September at New York’s JCC Manhattan.
“Stories can shift people’s understanding of an issue. Listening to one another, respecting each other’s personal experiences and frustrations, and seeing how they are political, is deeply feminist,” she says, “Bringing people together to hear how others are dealing with challenges can move them from the fallible idea that independence, going it alone, is the most important thing, to valuing interdependence.
“We have to rely on one another and care for one another,” she says.
“CARE,” Directed by Deirdre Fishel, Produced by Tony Heriza, Edited by Jim Klein and Annukka Lilja, is a production of World Channel and American Documentary Inc. It is available for purchase from New Day Films for $450.