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Suzanne Mintz

In recognition of National Family Caregivers Month, PHI interviewed Suzanne Mintz, president and CEO of the National Family Caregivers Association (NFCA), about the interconnection between family caregivers and direct-care workers.

Suzanne co-founded the NFCA in 1993, nearly 20 years after her husband Steven was diagnosed with multiple sclerosis.

Getting the diagnosis was “a huge wallop for us,” said Suzanne, who has been a caregiver to her husband ever since.

Over time, Steven has become increasingly disabled and is doing less for himself.

Suzanne says that she clearly remembers the day about seven years ago when they moved back into their home after six months of renovations to make it more accessible. She was transferring Steven from one chair to another when she “just lost it” and said “I cannot do this anymore. We have got to find help.”

Since then, Suzanne — like many family caregivers — has supplemented her caregiving for her husband with the long-term services and supports that home care workers provide.

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PHI: November is Family Caregiving Month, both a celebration of the hard work done by family caregivers and an effort to increase awareness and supports. I understand that there are a number of supports that family caregivers need, but can you talk specifically about the role of paid home care workers?

SM: Home care aides are critical players in the lives of family caregivers because when you are dealing with somebody with multiple chronic conditions and they need help with ADLs [activities of daily living], it’s really, really hard to do it on your own. The services of home care aides are really, really valuable for family caregivers.

November Is National Family Caregivers Month

 
President Obama has proclaimed November to be National Family Caregivers Month, a time to “pay tribute to the individuals throughout America who ensure the health and well-being of their relatives and loved ones.”

A recent NFCA survey of our members found that they are “higher burden” family caregivers, meaning that our members are the ones who really need help and are more likely to be using the services of home care aides.

We also found that spouses are the least likely group to get help. This is not new news; it’s been known for a while, but it was definitely corroborated with our findings.

PHI: What do you hear about home care aides from these “higher burden” caregivers?

SM: When people have aides whom they really like — who are doing a wonderful job — they can’t say enough good things about them. But there are a lot of times when the situation doesn’t work out and very often you hear family caregivers say, “I wish that that we could get high-quality aides on a regular basis and that these services could be covered — at least in part — by insurance.”

Of course in some states there is actually no training required for home care aides so it is not surprising that it runs the gamut. Quality across the board is not consistent.

PHI: You mentioned that there is widespread concern over insurance coverage.

SM: Yes, one thing that came up a lot in our survey was the concern about the lack of coverage for paid home care support. From a family caregiver’s perspective, we definitely need help with all of the activities that aides provide.

Yet the kinds of services that home care aides provide are not covered by Medicare or private insurance, unless associated with a hospital stay, and then it is only short-term coverage. So in order for family caregivers to utilize the services of home care aides or personal care attendants, it’s an out-of-pocket expense. Unfortunately, it’s not affordable for everybody.

Medicaid, which covers care for the very poor, only affects a small proportion of the population. Medicare and private insurance affect a lot more people. To help the majority of family caregivers, coverage would need to be provided through Medicare.

PHI: Do you find that family caregivers and the people for whom they care have a preference as to whether they want to hire a home care aide themselves or through an agency?

SM: It really depends on the family and the individual situation. Some families prefer one thing and some prefer the other. Each is different.

The help my husband gets is from outside the agency system. We are actually forced to do that — whether we want to or not. The help that Steven needs is provided through traditional home care aide services, but he also requires intermittent catheterization, which legally is not allowed to be provided by an aide. If you need both skilled and unskilled services, you have to create your own support team.

PHI: In your personal and professional experience through the years, are you hearing more about direct-care workers being included and acknowledged as integral members of the care team? For example, have you seen home care aides being consulted about the person they are caring for — not just by the family but by medical professionals themselves?

SM: I don’t think there is any question that an aide who spends time with her client has the opportunity to witness changes or altered behavior. Yet I think it is still difficult for aides to be formally considered a part of the health care team. We are still fighting for the family caregivers to be considered a part of the team. People talk about “person-centered” care, but we prefer “family-centered” care.

In some cases the aides have an intimate relationship with the patient. Their reporting should definitely be made available to the health care professionals. More likely than not, their reporting would be through the family caregiver.

If the family caregiver is working and the aide is with Mom or a spouse all day long, the aide knows a considerable amount and can see changes from day to day, and that information needs to be gathered. Part of the responsibility of the family caregiver is to gather that information in a way that can be presented when reporting changes about the patient. The home care aide knows about things from bowel movements to when her client has more difficulty feeding him or herself.

PHI: Do you think that better reporting — knowing what to look for, how to report observations, and who to report them to — is an area where home care aides could benefit from more training?

SM: Yes, more training would help. Family caregivers need to be trained, too. For instance, family caregivers need to learn to communicate effectively with health care professionals so that they are taken seriously. “Communicating Effectively” is actually the name of one of our training programs.

The aides require some type of communication training (pdf) as well. Not everyone has the same level of communication ability, from how to gather information and then report it both on paper and orally. I don’t think there is any question that they need training, but as you know there are some states that don’t require any training. That of course is where PHI comes in. You are doing great work.

PHI: Other thoughts?

SM: Aides, like everyone else, need access to health care. People need a living wage. The difficulties come in figuring out how to make the service affordable for the majority of Americans and providing the service provider — an aide or personal care attendant — with sufficient wages, training, and benefits.

– by Deane Beebe

Clare Stacey

While on the job, home care aides construct a unique self-identity that Clare Stacey, an assistant sociology professor at Kent State University, calls “the caring self.” Her new book, The Caring Self: The Work Experiences of Home Care Aides (Cornell University Press), examines in detail this identity, and how it contributes to the social inequalities that are present within the field of direct care.

Following is a conversation PHI recently had with Stacey in which she discusses some of the themes in The Caring Self.

PHI: What led you to write this book?

CS: I’m a medical sociologist, and I’m interested in health care inequalities broadly. I wanted to write my dissertation about [home care aides'] experiences, but I soon learned that — apart from a few articles here and there — there really hadn’t been an extensive treatment of their experiences.

I talked to 33 aides. I started in California, so that was the first phase of the study. And then when I moved to Ohio, I interviewed more workers to see if the stories were the same, because the context is very different in Ohio and California. In terms of unionization, for example, there’s obviously a big difference. But as it turns out, in terms of how they talk about their work itself, there isn’t a huge difference.

PHI: You describe perceiving an inner tension with home care aides: they know that it’s a job, but at the same time, what they do feels more like a calling to them. You write that, consequently, many feel as if the fact that they get paid for their work dilutes or cheapens their “caring selves.” Does some people’s unique capacity for caregiving create an exploitative situation, in your view?

CS: If you just look at the structural constraints, it’s an exploited workforce. Home care aides are not paid well; depending on the state they’re paid terribly. They often have no benefits and often can’t get full-time work. So an outsider looking in would think, Yes, this workforce is exploited. But that doesn’t necessarily mean that’s how [the workers] perceive it — or if they do perceive it that way, it’s complicated by the fact that they are working in a home context.

I think that’s what fascinates me about these workers: By working in the home, [they experience] what sociologists call the “feeling rules” that are associated with being a woman in a home, caring for a dependent. So it becomes very difficult for them to reconcile the fact that they need a living wage and fair hours [since] they talk about the people they work for as family.

The bottom-line message is not, “Yes, home care aides are exploited.” Rather, their exploitation happens in a context where they develop intimate ties with people, which makes it very difficult for them — and for people who advocate for them — to think about how to better their situation.

It’s also important to put their experiences in context. For me — an upwardly mobile, middle-class, white woman — I look at [home care] and say, I couldn’t do that job; I certainly couldn’t do it and be paid what they’re paid. But a lot of these women are coming to these jobs from their own homes, where they’re not being paid for care, or they’re coming from other service jobs that are paid pretty crappy and gave them no autonomy. So relative to that, a lot of them enjoy home care as a job in which they can actually define the terms of their labor. That doesn’t mean they’re not still exploited — they are. But recognizing [this context] is necessary to move forward in determining how to protect these workers.

PHI: You also write that home care typically involves low-wage workers caring for a generally low-income population. What are some of the unique consequences of this “poor caring for the poor” dynamic?

CS: I think it makes things even more precarious when both sides are disadvantaged by their social location — when, say, you have a poor person who is on [California's In-Home Supportive Services program] being cared for by another low-income person. First, it means that the client is dependent on state moneys, which in the current climate are shrinking. And when money is tight, I think a lot of these workers feel like they’re “in it” with the client. They know their social circumstances, so they’re willing to give a little bit more, stay a bit longer. There were women I interviewed who gave money to their clients even though they didn’t have very much money either.

PHI: Better wages and benefits are the most commonly offered solution to high turnover and low recruitment rates. But your book makes the point that there are nonmaterial, emotional factors that contribute to workers’ “caring selves,” and these also affect recruitment and retention.

CS: First of all, I want to say that I don’t think this job is worth doing unless there are fair wages and benefits attached. Some people have misinterpreted [my book] as saying, We don’t really need to pay [home care aides] fairly because they love what they do. That’s absolutely not what I’m saying. My argument is that — assuming that we give people fair wages and benefits — attracting people to the job depends on recognizing that high emotional aptitude is a skill.

Then, once [the workers are hired], a lot of the agencies — especially the for-profits — must continue to recognize that emotional work is part of what these women are doing, and that there is burnout that’s associated with this emotional labor. I would like to see [workers] have access — within reason — to sick days or respite days when they are burned-out emotionally.

But also, these agencies [must] recognize that intimate ties are often formed between clients and their caregivers. If [a home care aide] has been caring for someone for two years and they pass away, or if all of a sudden there’s a caseload change and they’re moved to a different set of clients, the agencies need to recognize that that puts a lot of strain on workers emotionally. [Home care aides] are not just making widgets; they’re creating a sense of well-being and safety and health in another person, and that takes a lot of emotional labor.

PHI: You argue in the book that one way to get people to recognize that companionship actually is a form of labor would be to do something about the companionship exemption to the Fair Labor Standards Act.

CS: Absolutely. The companionship exemption comes from a legacy of not seeing women’s work as work. We need to really change our view of that; after all, women disproportionately work in service jobs.

The home care field is growing exponentially, and we can’t get fair pay for these workers just by arguing that what they do is real physical labor, which is, I think, the way some of these advocacy groups have gone: “It’s hard work, it’s backbreaking work, it’s real labor.” I understand the temptation to go that route, because it’s pragmatic. But I also think we need to be pushing the Department of Labor and legislators to really think about emotional labor itself as work that should be fairly compensated.

– by Matthew Ozga

Peggy Powell

An interview with Peggy Powell, PHI Director of Curriculum and Workforce Development Read the full story

Getting real about retention

This is the fourth in a series of PHI Expert Interviews, which bring you insights from four senior PHI staff. They’re an impressive group — among the nation’s leading experts on long-term care’s direct-care workforce — and collectively they’ve spent decades studying the challenges facing the workforce and how to address them. We think you’ll be interested in what they’ve learned.

When Steven Dawson came out of the workforce development field in 1992 to join Peggy Powell in heading up the Paraprofessional Healthcare Institute, PHI’s sole purpose was to raise funds and provide technical support for Cooperative Home Care Associates. Over time, Steven led PHI into the broader long-term care arena, where its policy and practice experts work with employers and lawmakers to support and stabilize the nation’s direct-care workforce.

Steven has written about the impending direct-care workforce crisis (pdf) and the link between quality jobs for direct-care workers and quality care for long-term care consumers. Through the years, his emphasis has been on creating workplaces that are intentionally re-designed to retain direct-care staff.

“A constantly churning workforce is the enemy of quality care — ask anyone whose mother has had to deal with five different home health aides within a month, or with a blur of CNAs in the nursing home. The industry still manages to attract hundreds of thousands of skilled, caring workers every year, but once hired, these frontline staff are too often treated as if they were invisible. So, of course they leave,” he says. Read the full story

Gathering the Evidence that Makes Progress Possible

This is the third in a series of PHI Expert Interviews, which bring you insights from four senior PHI staff. They’re an impressive group – among the nation’s leading experts on long-term care’s direct-care workforce – and collectively they’ve spent decades studying the challenges facing the workforce and how to address them. We think you’ll be interested in what they’ve learned.

Marcia Mayfield, PHI’s director of evaluation, helps PHI document its successes for policymakers, employers, funders, and anyone else who needs to know what works and what doesn’t. As she explains it, her evaluation team does three things:

• Helps PHI learn from what it has done, to make its work more effective;
• Documents PHI’s work and measures its impact, “both for our own purposes and to share what we’ve learned with others in the field”; and
• Develops evaluation tools and approaches for use by anyone interested in improving direct-care jobs. For example, providers can use a business investment calculator due out this fall to calculate their turnover costs, comparing that figure to the cost of various retention or culture change initiatives.

Hired last year by PHI  after 12 years as an evaluator for an international women’s  health organization, Marcia says her goal at PHI is “to demonstrate in a measurable way that what we’re doing works. We essentially have to make the business case for the initiatives we’re promoting.”

Read the full story

Tapping the Power of Peer Mentoring

This is the second in a series of PHI Expert Interviews, which bring you insights from four senior PHI staff. They’re an impressive group – among the nation’s leading experts on long-term care’s direct-care workforce – and collectively they’ve spent decades studying the challenges facing the workforce and how to address them. We think you’ll be interested in what they’ve learned.

Peggy Powell is one of the founders of Cooperative Home Care Associates, the worker-owned home health agency that started PHI, where she served as director of education. Since joining PHI in 1991, she has worked with CHCA and other employers to develop strategies for recruiting, training, supervising, and supporting direct-care staff.

One of those strategies, peer mentoring, is gaining in popularity – and no wonder. Done right, a peer mentor program helps new direct-care workers get oriented to the job and the organization, bolstering their skills and their confidence. It also creates a career ladder for experienced workers.

And that’s not all, as Peggy has learned. Read the full story