Ep 01: What Has Happened to Our Country’s Caregiving System?

High-quality long-term care remains out of reach for millions of older adults in the U.S. Given this challenge, what should we know about our country's caregiving system to fix it once and for all?

In the first episode of A Question of Care™, Robert Espinoza speaks with expert guest Howard Gleckman, Senior Fellow at The Urban Institute and a columnist at Forbes.com. They discuss the profound challenges facing older adults and why the U.S. caregiving system needs a complete transformation.High-quality long-term care remains out of reach for millions of older adults in the U.S. Given this challenge, what should we know about our country's caregiving system to fix it once and for all?

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.

Throughout this season, we'll examine various aspects of the long-term care system for older adults in this country. Our discussions will shed light on critical topics like ageism, systemic racism, the difficulties in home care work and nursing homes, and so much more. To kick things off and provide an insightful overview of the issues ahead, we're joined by Howard Gleckman, a seasoned expert and writer who has extensively covered topics such as Medicare, Social Security, and the unique challenges facing older people in the United States.

Howard Gleckman: I'm Howard Gleckman. I'm a Senior Fellow at the Urban Institute, which is a policy research organization in Washington, DC. I wrote a book called Caring for Our Parents, and I spend a lot of my time writing and thinking about how we care for older adults, particularly older adults with chronic conditions in this country.

Robert Espinoza: The caregiving system in the United States is a complex web of services and support mechanisms aimed at assisting individuals who require long–term care, in particular, older adults and those with disabilities. It encompasses a wide range of settings, from private homes to congregate care settings like nursing homes and assisted living environments.

However, the system is often characterized by a myriad of challenges, including rising healthcare costs, limited access to quality care, workforce shortages, and a lack of comprehensive coverage for long-term care under traditional programs. These issues have given rise to a pressing need for reforms and innovative solutions that ensure that older people receive the compassionate and dignified care they deserve while easing the burden on paid caregivers and family members who, too often, are shouldering significant responsibilities.

So, to begin our conversation, I asked Howard a simple question: What has happened to our caregiving system?

Howard Gleckman: It's almost inappropriate to call it a system. It is so disorganized, siloed, and dysfunctional that it isn't a system. It's a group of options for care that works very poorly together and leaves people who need this care, people living with chronic conditions, and their family members in a terrible state of stress and confusion.

Doctors don't talk to home health agencies, who don't talk to nursing homes, who don't talk to social workers. So, it's really not even a system. As far as what's happened to it, I wrote Caring for Our Parents more than 10 years ago, and it's only gotten worse. And for a couple of reasons. I mean, the first reason is that more and more people need this care. The number of older adults, of course, is increasing rapidly as the baby boomers age. And the number of younger people with disabilities also is increasing, people particularly with intellectual and developmental disabilities. So, the need is growing. And the ability of the system to keep up with it is just declining.

Robert Espinoza: For many people who need long-term care, they soon discover that it's quite expensive. Research shows that the national monthly median cost for long-term care can range from $4,000 to $8,000, depending on what you need, what you want, and what's available. Why is long-term care so expensive, and what do people do when they can't afford it?

Howard Gleckman: So much of the cost of long-term care is labor costs. It's the cost of aides, home care workers, CNAs, and nursing homes. It's a paradox. We don't pay direct care workers nearly enough. Many of them are on Medicaid themselves. On the other hand, the cost is beyond the reach of many families. If you hire a home care aide through an agency post-COVID, it probably costs $30 or $35 an hour in many places.

The aide gets half of that. The agency gets the other half, which it uses to pay benefits and taxes and all the rest and make a profit if it's a profit-making agency. But for the family, $35 an hour is a lot of money. If you need to hire an aide for at least four hours a day, it's $150 or $140 a day. That's way beyond the capacity of most families. So, it is this paradox. It's too expensive for people, and it's not enough to produce a living wage for the people who do the work.

Robert Espinoza: And why haven't government leaders addressed this paradox? Why haven't they fixed this problem of affordability?

Howard Gleckman: We've gone through this. You and I, of course, have served on a number of groups together to try to think about this. We know what the solutions are. This [issue] is not one of these, you know, rocket-science things where somebody has to think out of the box to figure out what to do. We know what to do. The problem is the political system doesn't have the will to do it. The main reason for that is most of the solutions require getting more money in the system, and getting more money in the system requires raising taxes, and politicians don't want to raise taxes.

So my experience has been, and I'm sure yours is, that when I talk to politicians about this, and I talk about some of the solutions that you and I have come up with, the politicians say, "Great idea, but we're not going to raise taxes to do it. I can't pay for it." And it dies, at least on the federal level. There are some solutions, and we can talk about them. There are some solutions on the state level that are certainly worth watching. But at the federal level, we're going nowhere, at least for the next couple of years.

Robert Espinoza: You alluded to this earlier, but one of the central challenges in this long-term care world is that employers are desperate to find and keep direct care workers. They anticipate about 7. 9 million job openings in direct care by 2030. Likewise, those workers are desperate for jobs that pay enough and offer good benefits in a career path. How are you seeing these workforce issues play out?

Howard Gleckman: So, workforce issues are an enormous challenge on a number of levels. One of the things that happened even before COVID was the looming shortage of care workers.

Yet, a lot of it goes back to the demand: more older adults with chronic conditions and more younger people with disabilities. So, there's just a need for more workers. The supply of workers is constrained in several ways. One of them is the pay. You can get paid as much or more, you know, working in a warehouse as you can being a direct care worker.

One of them is the dangers of doing this work. I often remind people that being a direct care worker is one of the most dangerous occupations in America. It's more dangerous than being a coal miner in terms of injuries on the job. Most of those injuries are back injuries where you're trying to transfer somebody, and you blow out your back. But also depression is a significant problem for many care workers.

It becomes more of a problem because you're often doing a job with no benefits, including no sick leave. And that means if you do hurt your back, you keep going to work, and you're hurting your back even more until you can't work anymore. So, and people know about this: this is the kind of work that's the sort of word of mouth often... So, again, you get a job that pays more and is less dangerous doing something else.

Another issue for supply is immigration. We are competing with the rest of the world. Remember, we're not the only country that's aging. We're competing with the rest of the world for care workers. And many other countries are enthusiastically letting care workers into their country. And we're not. And whether that's nurses or home health aides, some people want to come here and do this work, and we won't let them in. And if we let them in, we don't give them a work visa. They can't work even if they're here. So, you know, we've brought this on ourselves.

Robert Espinoza: The research shows that most of us want to age in place, wherever we are. And we want to live independently as long as possible. And we also want person-centered care that respects our preferences, values, and dignity. How close are we to this ideal?

Howard Gleckman: Not even remotely close. I mean, we are so far away from that care ideal it scares me. Yes, you're right. Most people want to age in place, and most people do, you know, it's interesting. We focus so much on the nursing home problem, and it clearly is a problem, but the vast majority of people get long-term care in settings other than nursing homes. Probably 80 percent of people get care either in their own homes or in a senior living community or something like that, but not in a nursing home.

Nursing homes provide 5 or 10 percent of the total care we get. So we are getting it at home, but getting care at home is not so simple. Delivering care in a nursing home has its problems, or an assisted living facility has its problems, but it's relatively efficient. You have a large number of people who are in a confined space. And you need relatively few workers to care for them because they can go from one to the other relatively rapidly. If you have people who are living in suburban cul-de-sacs, just getting to them is a huge challenge. You spend time sitting in traffic, going from client to client. Or, of course, many aides don't even have cars, so they have to go by bus, which is, you know, an even less efficient way to get around. So, it's inefficient.

It's also very lonely. Imagine you're somebody again who lives in that suburban cul-de-sac. You grew up. You raised your kids there. You've lived there for 40 years, but your neighbors have now all moved. So you now have a whole new generation of neighbors who are families with kids, and you don't know them, and they don't know you. Maybe you can't drive anymore. So, getting even to the grocery store becomes difficult. This is just a huge challenge in terms of person-centered care. I wish the healthcare system thought about this more than it does.

So, imagine a typical kind of situation: an 85-year-old widow falls at home and fractures her hip. She goes to the hospital, the hip fracture is repaired, and the discharge planner at the hospital says, "So here's a list of skilled nursing facilities where you're going to go for rehab. I can't tell you which is better than another, but here it is. Good luck." They go to a skilled nursing facility, and maybe they never leave, or maybe the rehab goes well, and now they're discharged from there, and they're sent home, and they have no idea what to do.

Nobody even knows, in many cases, whether the home they're going to has stairs. Or whether there's an adult child living somewhere in the area who can help care for them. Or whether it is a neighbor or somebody in their church who can help care for them. No one has any idea. So, how can you set up a person-centered care system when you don't know anything about the person? They're just a fractured hip that we repaired, and we sent on their way.

Robert Espinoza: Anyone who has gone through the health care or the long-term care systems, whether coming home from a hospital, managing a serious illness, or needing to see multiple doctors and specialists—knows that these experiences are often disconnected. It seems that professionals and other people are not talking to each other. The information isn't being shared, and it's not being coordinated. Why are these systems so siloed? And why haven't holistic, integrated approaches been widely adopted?

Howard Gleckman: So, much of this goes back to 1965 and the creation of Medicare and Medicaid. In 1965, we created the Medicare system that provides health care for older adults and some people with disabilities. And then, we created the Medicaid system that provides personal care for older adults with chronic conditions who are also very poor. But these two systems have completely different payment structures, and they have completely different languages and completely different metrics for success. So we've created these two parallel systems that never really connect.

Another problem is you think about physicians who don't know about long-term care and don't get paid to give their patients advice about long-term care. There was a research study, a survey, done about five years ago by Levitt Associates. They surveyed physicians and asked them about a series of social determinants of health that could be important to their patients. [they] asked them two questions. One is, "Do you think these are important?" And the second question is, "Do you think you have any responsibility for helping your patients navigate these systems?"

What it found was nearly no physician who answered those surveys felt they had any responsibility for doing this. One striking example was that 75 percent of the doctors they surveyed said yes, it was important that their patients had information about transportation to the doctor. Because one of the big issues we have in this country is people don't go to the doctor because they can't get there. So 75 percent of doctors said, yes, this is very important. Two percent said they thought they had some responsibility for telling their patients what to do about it. So, what we need to do is find some kind of a system that can integrate the healthcare world on one side of this wall with the supportive services world on the other side.

We do it in a few places. There are PACE programs, which are very interesting. There are about 130 of them around the country, very interesting programs that provide care for people who are mostly "dually eligible," people eligible both for Medicare and Medicaid. There may be an adult day program. There's also a medical clinic associated with it, and they provide additional services that help people stay at home.

Certain kinds of managed care plans are called "special needs plans" for people with a high level of need. And some of these work quite well. There was a lot of variability in them. There's Medicare Advantage–about 52 percent of Medicare recipients are now in Medicare Advantage plans. Those Medicare Advantage plans for the last few years have begun to provide a little bit of personal assistance and other supports for people living at home, but it's very small. The way that the plans are compensated for doing this limits the amount of money they're willing to spend. So, while they may provide some personal care, home renovations, or meal deliveries, the value of the Medicare Advantage, which they call "supplemental benefits," is $30 to $50 a month. So, it's very, very small, but it's a toe in the water. It's the little beginning of this.

The last place we do it a little bit is with Medicaid long-term care. Most states have turned that over to managed care organizations, and they are supposed to provide fully integrated long-term care with health care. The idea, the theory, is that if you provide good long-term care, you'll reduce the health care costs. These plans are paid a fixed amount of money every month for their patients. The more they can do to reduce hospital utilization, the more money they can make.

So, the theory is we can align the incentive. Patients don't want to go to the hospital. The managed care plans don't want them to go to the hospital. The plans could do what they need to keep them safe at home. That's the theory. We don't know whether it's working or not. But that's the idea. And conceptually, it makes sense. Fully integrated within a plan like this should work. We just don't know if it does.

Robert Espinoza: I've often found myself taken aback when stepping into a pharmacy and seeing all those anti-aging products. This serves as a poignant reminder of the prevailing cultural perspective on aging that it's something we should hide or fix. So, what exactly are these attitudes that society holds about aging? And how do they influence our experiences as we journey into our latter years?

Howard Gleckman: So, the United States is interesting. We think about families. And so if you play word association with people, you say, "families," and they think about parents and children, you know, young children. And older adults are somehow separate from that world. When Congress has debated family leave, for example, often what they talk about is leave you can take for a newborn or a newly adopted child, not leave you can take to care for a parent. So, you get old, you're on your own in this country.

We also think that just because you're older, you are a taker of services from this country. We don't think older adults have something to give, which older adults often do. Of course, many work well past age 65 or 70—many volunteer. I'm on the board of a local community-based organization called the Jewish Council for the Aging, and one of the things we do there is provide volunteer opportunities. And we provide training programs to help people do resumes. And we don't operate on the predisposition that older people are useless and only stay home and wait to die.

But that is often the culture in the United States. I don't mean to beat up on physicians again, but this happens all the time when older people go to a doctor. A person goes to the physician and says, "You know, doc, I'm a little depressed." And the doctor often says, "What do you expect? You know, you're old, your friends are all dying. Of course, you're depressed. Go home."

And the medical system doesn't know how to talk to older adults. Many employers don't know what to do with older adults. They immediately look at them and say, well, they'll never get the technology. And, you know, some of us do, and some of us don't, but you can't just make a general supposition.

And, of course, we all remember what happened recently when Nikki Haley, one of the Republican candidates for president, looked at Joe Biden and said these old politicians ought to all have a dementia test so we can realize whether they're competent or not. Frankly, I heard that and said every politician ought to have a test to determine whether they're competent, no matter their age. But that's not how we think in this country.

Robert Espinoza: Howard, we've officially entered the presidential election season with several leaders declaring their candidacy. How would you describe the political climate surrounding older adults and aging?

Howard Gleckman: I think, for the most part, politicians are ignoring it. And frankly, I fear that this discussion of Biden's age, and frankly, if Trump is a Republican nominee, Trump's age, is going to make people even more reluctant to talk about getting old and what that means, but we don't talk about it.

I'll give Biden credit. He did... When he ran for president, he did include some very ambitious proposals. Remember, he was going to increase Medicaid spending for home- and community-based care by $400 billion over 10 years. That wasn't going to solve the problem, but it was going to go away. And Congress wasn't interested in doing anything about it. But Biden has given it some thought. He's talked about family leave. He's talked about some of these other things.

Pete Buttigieg, when he ran for president for the Democratic nomination for president, didn't make it, of course. He had a fairly full-blown plan for long-term care. Hillary Clinton talked about it a little bit in her campaign years ago. So, it's surfacing a little on the federal level, but not very much.

There is interest in the states, and that's where we ought to be looking for the next few years. Washington State has adopted a public long-term care insurance program. They will begin collecting the taxes and the premiums for that next month in July [2023]. And they'll begin paying benefits in a couple of years. California is thinking about doing the same thing. Minnesota is looking at a number of different options for financing long-term care, some public and some enhanced private solutions. And many states are looking at delivery enhancements and better ways to provide home- and community-based services, for example.

One of the things about the Medicaid program is that it's run by states, even though the federal government contributes much of the money. It's run by the state, so you get lots of variation in the states. And some of that's good. Some states are very creative about what to do, but some are really bad because some states are very reluctant to provide the kind of resources that people need to stay home if they need long-term care.

Robert Espinoza: We saw the state variance during the COVID-19 pandemic. And I want to ask you a question about this crisis. It ravaged nursing homes, and it brought to light the challenges that are facing, specifically low-income older adults and people with disabilities who need 24-hour skilled care. What lessons have you drawn from this healthcare crisis?

Howard Gleckman: So, the first thing to keep in mind is the magnitude of this for older adults. Nine hundred thousand people died of COVID during the pandemic [between March 2020 and May 2021]. And we're beginning to learn that even more people died of loneliness and social isolation. It wasn't COVID that got them, but it was the consequences of COVID. About 200,000 nursing home residents died during the pandemic of COVID [as of February 2022]. I think the pandemic was an inflection point for the nursing home industry. It also was challenged before. But it's had huge challenges since. Its occupancy declined dramatically. It's ticked back up but still not gotten close to what it was.

Remember that nursing homes mostly do two different kinds of work, which goes back to this Medicare-Medicaid problem we discussed. There are skilled nursing facilities that mostly do rehab for people who have been discharged from the hospital. Then there is the long-stay part of nursing homes, which are often patients with dementia, other people who are living in the nursing home, and they'll probably be living there for the rest of their lives.

Both of these were happening in the same buildings. And they were happening in the same buildings because Medicaid does not pay enough for nursing homes to make money or break even. Medicare tends to pay more than it costs to care for its patients. So, what nursing homes did was use the Medicare dollars to subsidize the long-stay beds.

That system does not work very well anymore. Part of the reason is that much of the rehab… For example, somebody has a hip surgery or a knee surgery in the hospital. Much of that rehab now is happening at home because the technology makes it easier to do it. The surgery is less invasive. The rehab technology is much more flexible. So, a lot of that rehab is happening at home.

Another thing that's happening is these managed care plans are paying the nursing homes 20 percent less than traditional Medicare did or does. So that's reducing the amount of money these nursing homes make on the Medicare post-acute, post-hospitalization side. But they're still not making enough money on the Medicaid side.

So, what's been happening is a lot of particularly not-for-profit nursing homes are going out of business. They cannot afford the labor costs, which are going up because of COVID. Many of them have to be recapitalized. They need a lot of renovations. Some of that includes better air conditioning and air handling systems because of COVID. They're probably going to lose the ability to have quad rooms; some of these Medicaid nursing homes often have four people in a room. We learned from COVID that it's a really bad idea. So that's going to change the economics.

So what's happening is a lot of the not-for-profits that were running on very narrow or no margins at all are going out of business. They're being acquired by not-big, huge chains. But they're being acquired by the small chains that may have 30 or 40 nursing homes in a particular geographical area. Some of those operators are pretty good. They're doing a pretty creative, good job with this. Some of them, frankly, are terrible.

This is a real challenge for government regulators. On the one hand, you need to impose sufficient regulations to make sure that residents are safe and healthy. On the other hand, you don't want to overregulate, so you make it impossible for operators of nursing homes or assisted living facilities to be creative and think differently about how they provide their care. So, finding that balance is a real challenge for the regulators, and I don't think we're there.

Robert Espinoza: In 2010, I entered the aging services field, starting with a focus on the policy barriers facing LGBTQ older adults and then transitioning to my current role, which focuses on improving jobs for our country's direct care workforce. When I first joined this critical field, I was motivated by the reality that my parents, like many older Americans, were reaching an age when they would soon need professional long-term care support.

And yet, when I looked into what was available, I was stunned to discover the support system that was supposed to be in place was, in actuality, fractured, thin, and unaffordable. Like many family members, I panicked. What would our family be forced to do to ensure my parents could continue to age with dignity?

A Question of Care targets people like us, caught in these situations, struggling with an inadequate caregiving system and unsure where to turn. In our first season, we'll explore nine critical topics from different perspectives, shedding light on how older adults are affected. Join me on this journey as we explore the questions we must answer to start repairing our caregiving system.

Thank you to my guest, Howard Gleckman, 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.