Ep 06: Why Can’t I Find a Home Care Worker?
Home care workers are a lifeline to millions of older adults and people with disabilities. Unfortunately, many of these workers are walking away from this sector to pursue better-paying jobs. As a result, it’s nearly impossible to find and retain a highly qualified home care worker these days.
In this episode of A Question of Care™, host Robert Espinoza speaks with Dr. Madeline Sterling, a doctor, researcher, and professor at Weill Cornell Medicine. They dive into her studies on home care workers, what they reveal about this job sector, and how the U.S. should transform these jobs to benefit everyone.
Robert Espinoza: How did the wealthiest country in the world get to a point where it can't support the health and long-term care needs of more than 54 million older adults? Welcome to A Question of Care™, a podcast that explores the many answers to this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care, and the workforce.
On today's episode, we'll be exploring the vital role of home care workers for millions of older adults and people with disabilities. Why is this essential workforce so undervalued? And why do so many older adults find themselves asking, why can't I find a home care worker? Here to guide us through the topic is Dr. Madeline Sterling, a doctor and researcher who has published several articles on home care.
Dr. Madeline Sterling: My name is Dr. Madeline Sterling. I'm an Assistant Professor of Medicine at Weill Cornell Medicine in New York City.
Robert Espinoza: For Dr. Sterling, going into the medical field came to her naturally, driven by a passion to care for patients.
Dr. Madeline Sterling: I always wanted to be a primary care doctor. I love taking care of people over the continuum of their lives, getting to know them, helping them through ups and downs, managing chronic conditions from age 18 upwards to a hundred, and, you know, also getting to know their families. It's a privilege.
I love that I can have an impact at multiple levels. I love that I can care for someone on a Monday morning and work on their diabetes and help them get that sugar down. And then I love that in the afternoon, I can do some novel research, whether it's on home health or the social determinants of health or cardiovascular disease, and have an impact that way.
Robert Espinoza: Much of Dr. Sterling's published research has focused on home care workers, vital to millions of families. Unfortunately, news stories about homecare agencies or individuals struggling to find homecare workers are published almost daily. Before we ask Dr. Sterling for her thoughts on this trend, let's lay out a few points.
By definition, home care workers assist older adults and people with disabilities in their private homes with daily tasks, such as dressing, bathing, and eating. Personal care aides may also help clients with meal preparation, housekeeping tasks, errands, and more. In contrast, home health aides perform specific clinical tasks, such as wound care and blood pressure readings, under the supervision of a licensed professional.
In 2021, the home care workforce comprised 2.6 million workers, according to PHI, a national group focused on this workforce, and, for full disclosure, my employer. When you include other direct care workers, such as residential care aides and nursing assistants, this direct care workforce is larger than any other occupation in the country.
Why is that? The number of Americans who need care, primarily people aged 65 and older, is ballooning and because people are living longer. Care is also more complex and diverse than before, which creates more need for skilled direct care workers. Even though the data shows that the home care workforce surges annually, I asked Dr. Sterling why so many people find themselves confronted with the question, why can't I find a home care worker?
Dr. Madeline Sterling: There are a couple of things. As you know, we have a national shortage problem right now. This has always been a tough job. Having enough workers and retaining those in the jobs is hard. So, there is a supply problem and a retention problem.
From the patient and family point of view, it's a real struggle to find a home care worker because no one's explaining how to navigate home care. Unfortunately, patients and families don't think about home care early enough. You know, oftentimes, physicians themselves do not know how to help people with the process, or they are not even sure of what people qualify for and what their needs are.
I see this all the time in practice, where a patient's doing okay, and then, all of a sudden, they get sick, and a crisis ensues, and that's when they start thinking about a home care worker. And by that point, it becomes a scramble. Unlike in the hospital system or other places of care where you have somebody walking you through how to obtain services or get them in the home, home health, for various reasons, is separate. And the average patient and family don't have the resources to get through the system and obtain a home care worker.
And so it's a couple of levels. I think there's the shortage issue with the workforce and then on the sort of medical side of it and the patient family side, a lack of understanding and a lack of resources and infrastructure to get the worker that would be a good fit or what they need in the home at the right time.
Robert Espinoza: People often misunderstand these workers. Dr. Sterling, what does a home care worker do, and who makes up this workforce?
Dr. Madeline Sterling: Sure, so I like to say that they do it all. Home care workers are trained and certified healthcare professionals.
One piece of confusion is that the name differs depending on the payment structure and the state you're in. And so there is confusion in that sense. Still, regardless of whether you're a home health aide, personal care aide, or attendant, they are providing hands-on, day-in, day-out care, assistance with activities of daily living, bathing, dressing, getting up and about, meal preparation, all the way to aspects of medical care.
We've shown through our research that there's this public perception that they perform low-skilled care. And, when we've surveyed households across New York State and the country, we found that the majority of families say workers are doing way more than personal care. They're helping with a lot of medical tasks. And so there's absolutely a lack of awareness of what they do, but the bottom line is that workers are in the home, not just doing personal care, but helping with many aspects of medical care and providing a lot of value.
Robert Espinoza: As Dr. Sterling described, home care workers are vital to the lives of their clients, often fulfilling a wide range of physical, social, and emotional needs.
For example, they might be helping people move safely throughout their days, offering emotional support, problem-solving with family members, or managing complex conditions such as Alzheimer's or heart disease.
Despite the popular misconception that this work is low-skilled, it takes significant training for home care workers to acquire the right skills and knowledge. However, training is grossly inadequate for these workers. While home health aides must undergo at least 75 hours of training based on federal law, personal care aides have no federal training requirements, and states are all over the place regarding training standards for these workers.
Dr. Madeline Sterling: One home care worker in my practice has shown me the value of the workforce. Her name is Marie, and she has been a long-time home health aide for one of my patients who has a variety of chronic conditions, including cardiovascular and osteoarthritis. She's had spine surgery.
And this worker is simply amazing. She comes to every visit with my patient, and they do the visit together with me. She brings a notepad and conveys all of the things that happened during the week that I need to know about. When was my patient's appetite not great? You know, what were the side effects of that medication we started a week ago?
What's been going on in terms of her other doctor visits? Oftentimes, it's these little insights. A few weeks ago, she told me my patient's balance wasn't great. And that was really helpful. We then did a neurologic exam in the clinic. We tried to figure out what was going on, and we then referred her for testing.
And I wouldn't have necessarily picked up on that. Again, I'm not the one in the home all day. And so, if it weren't for this home care worker, I wouldn't have the complete picture. And I have so many patients where that's the case. This is a prime example of when the patient allows; it's wonderful to include the worker if that's feasible. And ask them a question or two.
And this can be very simple. Doctors need that much training on this. It's simply a matter of the patient saying this today and then looking over to the homecare worker and saying, Is there anything else you'd want to add? Especially as more families, households, and patients will be utilizing home care workers to age in place.
Robert Espinoza: What advice would you offer other doctors to strengthen the relationship between their office and the home care worker?
Dr. Madeline Sterling: There are three key things that physicians can do.
The first is to be aware that when someone comes to the visit, oftentimes they might not have gotten there alone. And so there may be someone in the waiting room, whether it's a family member, that spouse, the daughter, whoever it is, the paid home care worker. That person may have a great deal of knowledge and understanding of that patient, which could aid in the visit and offer some new data on what's going on. And so again, it is always up to the patient whether that person can be included, but if so, I would consider incorporating it.
The second piece of advice is if you have another caregiver in the visit, let's say it's a family member or a paid care worker. You should ask them questions. They have a tremendous amount of understanding and appreciation of the care or symptoms that may be going on in the home. So ask them what they notice. Very simple questions. What do you notice? What are some things we should talk about today that haven't come up already? What do you think are the patient's biggest challenges in managing their health or in getting around? Open-ended questions like that set the stage for the sharing of important information.
The third piece of advice is to empower whoever it is in the home. Empower them to convey what's going on. If they notice a change, they may be the first to notice it. The first person to notice that, you know, Mrs. Jones is having chest pain, or she's having more swelling today in her legs. Empower them to call for help when they need to. That may be calling the home care agency. That may be encouraging the patient to call the doctor but empowering them to say, You know what, you've been trained to observe and advise, and I want you to do that. I want you to be a partner in the care of this person. That goes a long way.
Robert Espinoza: Much of your published research examines the home healthcare workforce supporting people with heart disease. You found that home care workers increasingly provide care for people living with heart failure at home, either immediately after leaving the hospital or in the long term. Yet, your research has also revealed that home care workers often find the topic of heart failure frightening and unpredictable. They offer this support without much training in heart failure, and they can feel poorly supported by other healthcare professionals, especially when their clients' symptoms get worse.
What interests you about homecare workers and the topic of heart failure?
Dr. Madeline Sterling: I saw that a lot of adults with cardiovascular disease tend to be older and have a lot of comorbidities.
And these are tough illnesses to manage at home. And so I began to see in my clinical practice that a lot of my patients were, of course, asking their families for help, but often that didn't seem like enough, and they needed help from paid home care workers.
And I have to say, this got me thinking, you know, I never thought I'd be making a whole research career in home health. But I saw once we got out there in the field and interviewed patients and workers about what they're doing. I thought, oh my goodness, in all my training in medicine, no one mentioned this workforce. And my gosh, they're doing a lot. We saw that they were helping patients get to doctor's appointments, reminding them to take medications, helping prepare low-fat Mediterranean-style diets, weighing them, and taking blood pressure. All these activities we know in medicine are important to managing those symptoms. And I thought we had to study this. We have to show what the contributions to care are.
And then, of course, are there gaps? Are there things where workers are doing and contributing but may need more training? Or, are they providing this care, and the system needs to be made aware of it because we have yet to measure it and show the value? And that's where I thought to myself, we need to do a lot of research here. There's a lot to unpack because these workers are, especially for chronic cardiovascular disease, where outcomes are poor, so patients are in and out of the hospital frequently. Quality of life can be really bad. And so, here's a workforce waiting in the wings already in the home.
I saw an untapped opportunity to not only show the value but almost prove it scientifically.
Robert Espinoza: Has your research revealed anything surprising about the nature of home care jobs?
Dr. Madeline Sterling: You read all the time, and my work has shown that this is a really tough job. The wages are poor. Conditions can be challenging. The hours are erratic. And yet, what surprises me over and over again is workers have this calling for it. Workers are passionate about helping people, and the same passion drives many of us into health care.
And what always surprises me but also makes me smile is that despite some challenging circumstances, you generally have a workforce with high job satisfaction. And much of that when we go out and ask them about that, they always say, I'm here because I care about this patient or this client. I want them to do well. It's a calling. And there's so much good here, and people need to know about this.
Robert Espinoza: Despite the emotional rewards that many home care workers report receiving from their daily work. These workers also face numerous challenges that make it difficult to make ends meet and stay in these jobs.
For example, the median wage for these workers in 2021 was about $14 an hour. However, because many of them are relegated to part-time work by their employers or the economy, the median annual income that year was about $19,000. As a result, 43 percent of these workers live in low-income households, and more than half receive some form of public assistance.
Home care workers also struggle with inadequate training or advancement opportunities. They lack recognition and respect both by the health sector and society. And because this workforce is made up predominantly of women, people of color, and immigrants, they must navigate the widespread bias and discrimination that are too often leveled at those populations.
One of the answers lies in understanding how doctors and nurses relate to home care workers.
Dr. Sterling, you published a study in February 2020 examining the workflow of home health care among people discharged home after being in the hospital with heart failure. You found, "The roles of home health aides and agency nurses were unclear to physicians, patients, and family members alike." One physician remarked, "I don't have a clear grasp of how the system works. I don't know exactly where the aides are coming from. The whole process is confusing."
Why is that? Why do clinicians and so many others misunderstand the roles and responsibilities of home care workers?
Dr. Madeline Sterling: I think we haven't been trained. So, first off, in a typical medical curriculum, unless you're going to do a geriatrics fellowship, the majority of doctors are not made aware of all the people who help patients at home. So that's the first thing. And that needs to change, right? We have 75 percent of older adults who want to age in place, and it can't all come at the backs of family caregivers who are already stressed and overwhelmed and have conditions of their own. We need a paid workforce that can help. And so the first step is [recognizing] there's a lack of awareness because they haven't been taught about it.
The second thing that makes it challenging is that the care is being delivered in an environment that's separate. The home is a separate place of care. Only recently, COVID may have helped with some of this. Only recently have we seen that other models of care don't happen, you know, that aren't tied to the hospital or the clinic. We saw during COVID—and there have been studies that show [this]—that if you got home health care after COVID, you did better in terms of meaningful outcomes.
And so [it's important to make] the medical system and traditional team-based care in the hospital and clinic aware that there are other providers in the home that have meaningful insights about patients. Their observations can be truly impactful if we just had a way to connect them better.
Robert Espinoza: In July 2022, you co-authored an issue brief for the Center for Home Care Policy and Research at VNS Health in New York, the largest not-for-profit home and community-based healthcare organization in the country. This brief examined the catastrophe of the COVID-19 pandemic concerning the home healthcare workforce and pandemic preparedness.
What are the key lessons from this brief, and how should they inform the healthcare sector as we prepare for the next pandemic or health crisis?
Dr. Madeline Sterling: I was so honored to be involved in that work. This was work led by VNS Health. And I think key lessons were: this workforce went through hell and high water. They were on the front lines day in, day out, and often, you know, putting their health at risk to care for people. And often, that lack of awareness and underappreciation really came through.
As we saw early in the pandemic, at least here in New York City. There was a huge celebration for all of these various healthcare providers. I mean, we were clapping and pots and pans every night. And yet, if you go out and talk to workers, they feel that they were out there and, again, not seen. Their contributions are not seen or valued.
So the first thing is that the pandemic has taught us we have a workforce that has rolled up their sleeves. This was not a job you could do from home, and they were essential. And in future pandemics, they need to be classified as that and have all the protections that other essential workers have.
The second thing we saw from the policy arena and the work with VNS is that many stakeholders needed to be at the table to make change for the workforce and home care agencies.
Robert Espinoza: How were home care agencies affected?
Dr. Madeline Sterling: It wasn't just the workers that experienced challenges. Home care agencies experienced challenges. Again, unlike the healthcare system or the hospital system, where there's a sense of coordinated activities, home care is fragmented; it's not connected; it's out over there.
And so, unfortunately, when a pandemic happened, we saw a lack of coordination. It wasn't clear who was going to supply all the supplies and PPE we needed. Was it the city? Was it the state? Was it the federal government? Were agencies? We saw workers themselves buying supplies. Take that one example, and you can see how a lack of coordination among a variety of stakeholders led to inefficiencies. Moving forward, there needs to be more concerted effort and more policies to protect the workforce.
There were policies, but often, they were policies for family caregivers and essential workers. And then there were always loopholes where not all the workforce received the protections and pay they needed. And so, you know, we learned a lot. My hope is we can take the good forward and then learn from maybe the not-so-optimal moving to the. Hopefully, we won't have a future pandemic, but if there is one, maybe you can take those lessons learned looking forward.
Robert Espinoza: If one of your colleagues were to ask you why home care workers are important to the health care system, what would you tell them?
Dr. Madeline Sterling: I would tell them that I see a patient for 20 minutes a day, and the rest of the time, they're at home. And, you know, what happens there matters a lot for their health. And so if a patient has a home care worker, I view that as an asset.
And we need to be, as a system, not only valuing what they do but working on ways to integrate what's happening back to other healthcare providers like myself. That would be key, and that is where we need to head.
Robert Espinoza: If you had the power to change how home care workers are recognized and supported, what would you do?
Dr. Madeline Sterling: Pay them? It's wages, wages, wages. They do not do low-skilled work. These are really hard jobs, and they need to be fairly compensated. As a society, we need to do that. So, any policies that can strengthen the workforce, recognize what they do, build in ways to increase minimum wage policy, protections, hazard pay for the next pandemic, benefits, health insurance—all these things that allow the workers to do their job and do it well. I think that would not only benefit the workforce but it would improve the quality of care delivered and, ultimately, patient outcomes.
Robert Espinoza: When I describe the plight of home care workers to my friends or audiences in different parts of the country, the most common question is: why are these valuable jobs for home care workers so inadequate?
I respond first with the most evident reasons. These jobs are invisible to most people and often wrongly understood as low-skilled. Then, I tell them employers vary in how they support these workers. Some know what to do but need more resources, while others need help recruiting and retaining workers. Overall, the sector needs more transparency in spending public funds without overburdening employers with paperwork.
And I explain how our country's public financing system for long-term care, which is Medicaid, is financially strained and politically attacked, which prevents many employers from doing right by these workers.
But the core of this problem, as with so many other issues today, rests within the confines of history and can largely be explained through the lens of injustice. The truth is that direct care jobs are inadequate because the people who make up most of this workforce—women, people of color, and immigrants are the same ones who have always borne the brunt of history's most significant inequities. For example, women, specifically women of color, have been portrayed in the sexist policy imagination as innately inclined toward caregiving. Thus, this work is seen as a labor of love and not a real job, which is a gross misconception.
Another factor is systemic racism, which has relegated people of color to low-wage sectors like direct care that routinely exploit their physical labor and then deny them a fruitful existence. And immigrants, specifically those of color, increasingly sustain this job sector and our national economy. Yet they are routinely stripped of their rights and humanity in a country that sees them either as threats or as physical bodies to fill jobs that "no one else wants," as if anyone deserves a lousy job.
The other reason these workers remain undervalued is that the people they support—older adults and people with disabilities—have long been neglected in the public and political narratives. I can't help but relive the shock and the rage of the first few months of the COVID-19 pandemic, which was ravaging nursing homes and explicitly targeting older people, people with disabilities, and people with severe health conditions. Yet all these groups were generally left out of mainstream telethons, as just one example.
The ultimate injustice is that the same people who routinely sacrifice their livelihood for our country, willingly or not, are then virtually ignored by the government and the public alike. We clap for them from our homes but don't take that applause to state and federal lawmakers to demand a fundamental transformation.
Perhaps these jobs won't be improved until more of us face the personal consequences of being unable to find a home care worker. What will you be forced to do? Who will you turn to? And will it be too late?
Thank you to my guest, Dr. Madeline Sterling, and to you, our listeners. If you enjoyed this episode of A Question of Care, please share it on your social channels and stay tuned for future episodes.
This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.
This transcript has been slightly edited from the original episodes to improve readability and accessibility—while preserving the guest's authentic voice and conversational style.