Let's Find Common Ground - The Long-Term Care Crisis: Howard Gleckman, Stuart Butler and Paul Van de Water

Episode Date: July 22, 2021

America’s long-term care system needs much more than a facelift. Is there a common path to solutions?Most baby boomers who retire today can expect to live years longer than their parents or any previous generation. That’s the good news. But there’s a greatly increased need for long-term care as they age. The current system is in crisis and needs much more than a facelift.  In this episode, we hear first from a policy expert, Howard Gleckman, of the Tax Policy Institute, who explains why solutions to this crisis have been so hard to find. We also interview Stuart Butler and Paul Van de Water on their differences over paying for long-term care, and how they came to find common ground. This podcast was co-produced in partnership with Convergence Center for Policy Resolution and is one of a series of podcasts that Common Ground Committee and Convergence are producing together. Convergence brings together key stakeholders of an issue to develop policies that deliver the most value to the greatest number of people. These projects emphasize collaboration and often result in friendships among people with strongly held opposing positions. Convergence recently published Rethinking Care for Older Adults, a report with recommendations to improve care, housing, and services for seniors.

Do you take care of your parents, or maybe you know someone who does? As Americans age, millions of adult children are stepping in to provide care or oversee paid caregivers. For many families, this involves a great deal of time, angst, and money. There's a pressing need for long-term care to help people as they age, this includes everything from caregivers to transportation services to stair lifts at home. And right now there's very little consensus about how to pay for it. This is Let's Find Common Ground.

I'm Richard Davies. And I'm Ashley Melntite. In this episode, we break down the issues of long-term care and what's at stake. Our first guest is former journalist Howard Gleckman of the Tax Policy Institute. He sets the stage for us, and then we meet two experts from different political backgrounds who used to strongly disagree about how America should pay for long-term care. Today they're more closely aligned.

We find out how they got there. First, let's hear from Howard Leckman. Howard, when we talk about long-term care, what exactly do we mean? So this is a confusing issue, and I'm glad you asked me. If you are somebody with disability or with chronic conditions, likely needs some assistance, some personal assistance. That might be help getting started in the morning. It may be transportation to the doctor or the physical therapist. It might be respite care for your family caregiver, grab bars,

or your bathroom. These are not medical interventions. So this is not long-term healthcare. This is long-term care. That's right. This is long-term care or sometimes called long-term supports and services. It is not healthcare. It's not medical treatment. And that creates problems in the United States because we have a very high barrier between the way we treat and the way we pay for medical care and the way we treat long-term care. So for example, Medicare, the government program

for health care for older adults in the United States, does not pay for a long-term care for the most part. Health insurance, even supplemental Medicare insurance, does not pay for long-term care, but of course it does pay for healthcare. The other place where this is a real challenge, of course, is in the physician's office or in the hospital. They are quite familiar with healthcare and their specialty, but generally know nothing about the supports and services that their patients need.

So if, for example, you have some medical episode, you go to the hospital, you're discharged from the hospital, the hospital's private discharge plan will tell you all about your next medical appointment, but it's not likely to tell you very much about the supportive services you need. For example, I tell you that you should have grab bars in the bathroom because you're a fall risk, or that you're going to need transportation to the doctor. And you have personal experience with this, don't you? I do. I was a family caregiver myself.

My wife and I live in the Washington, DC area. Her parents and my parents lived in Florida one day the phone rang. And it was my wife's dad telling me that per a mob, I just had a stroke. We flew to Florida and we discovered that my mother-in-law was on life support and we discovered that my father-in-law was quite ill himself. My mother-in-law had been trying to care for him without telling anybody in the family

how sick he was. We had to make two very, very difficult decisions. The first one was to take my mother-in-law off of life support and then the second one was we had to figure out how we were going to provide care for my father-in-law. We had no idea what to do. And that sort of set me on my own journey a few months later, my own dad got sick and I had to do it again.

It's important to keep in mind that most people who receive care get it from family members in France. That's an enormous burden on family members You know my own experience was It was the hardest thing I ever did And some ways it was wonderful. I was able to give back to my parents But it was very difficult and juggling it any job was not easy What are the implications if we fail to address what seems to be a growing crisis in long-term carers? Obviously, the population is aging.

This is often referred to as a crisis or a disaster. It's important to keep in mind at the beginning that this is all a consequence of something that's wonderful, which is life expectancy of human beings over the last hundred years has doubled. The turn of the 20th century, the average life expectancy of someone in the west was about 49 years. Now it's over 80 years because of advances in medical technology and advances in public health. We have done a remarkable job at keeping people alive for much longer, and many of those

extra years are actually years in good health. What we haven't been able to do is develop a system that can provide supports and services for somebody who does live a year or two or maybe more needing some assistance This was never a problem before because before the invention of penicillin for example You know you fell off your horse you got an infection and you died you didn't need long-term care You were dead in a matter of weeks now you get get an infection, you get penicillin, and you go on, you leave your life. The incidence of breast cancer, survival among women,

has increased dramatically just in the last 20 years. Used to be the breast cancer was a terminal disease. You got it, and you died. Now it's treatable, at least manageable. And it means the women with breast cancer will live, in many cases, a normal lifespan. But it also means they'll live long enough to get diseases of old age, like dementia, for example, or severe arthritis. And what are the consequences of these changes, both for the healthcare system and for people

who are now living longer? So the consequences of not getting supports and services are really twofold. In terms of money, we're gonna spend much more, we do spend much more on the healthcare side because we're not providing the supports and services that people need. Simple example, your elderly widow lives at home, you don't have good nutrition,

you don't have those grab bars in the bathroom, you're more likely to fall. You fall, you get end up in the emergency department, then you get end up having hip surgery, that all costs the system of fortune. And it's unnecessary. The other issue, the more important issue to me, is what it means for the quality of life of those older adults. That woman not falling is going to live a much better life than she will live after she falls and after she has the hip surgery and has to go through the rehabilitation and may never be as mobile as she was before the fall. How many people are we talking about today who need long-term care. We estimate that about 14 million Americans currently need a significant amount of supports

and services. As a really important number, that number will double by the middle of the century. The increase in the baby boomer population and the increase in the number of people with disabilities will also live in longer lifespans will result in a dramatic increase in need for long-term support and services over the next 30 years. If there are two sides to this issue, what are they? What do different groups of people believe we should do about this? Think about how we are going to finance this care.

I'm going to pay for it and then think about how we're going to deliver this care. So over the last year, during the COVID pandemic, the delivery issue has been the one that's been in the forefront. More than 150,000 older adults have died in nursing homes and other long-term care facilities in the United States. That has focused the mind on the fact that the way we deliver long-term supports and services in this country is not very good. So one thing we need to do is we need to think about how we're going to deliver this care. Can we do a better job delivering it for people who need to live in institutional settings? And can we do a better job of getting people

who don't need to live in institutional settings out of those settings so that they can stay home and get their care? The second related issue is how do we pay for all this? Right now, the United States mostly pays for this. With Medicaid, which is a program that's available only for people who are very poor and have very, very low incomes, less than $700 a month, the

United States and the UK are the only places in the major developed world that do not have a public social insurance program for long-term care. Both the United States and England have welfare-based systems programs that are available for you if you're poor enough, but they don't have programs available for the public in general. And we need to think about how we're going to pay for this for people who are not poor. You mentioned COVID a few moments ago. what's changed with COVID? This was an issue that we did not want to talk about. COVID has forced us to think about it.

It's been on the front page of every newspaper, it's been all over the television news, it's been all over the internet. You cannot miss it. This has created a true crisis, but it's also created sort of a moment for people who care about long-term care reform. It's focused the public's mind, and to some degree, it's focused the politicians' mind

on the importance of dealing with this issue. We cannot kind of keep this in the closet. And you see that President Biden has proposed a $400 billion increase in Medicaid spending for long-term care at home. No president has ever done anything like that. This would be the biggest expansion of Medicaid long-term care since the program was invented in 1965. People who need long-term care, Do they have to drain their finances first before

they get assistance that's paid for by the government? If you spend enough of your money out of pocket on this care and some people do, you will go broke and Medicaid will be there as a backstop for you. So there is a system to support you. It may not be very good. It may mean, for example, if you have to go into a nursing home, you may share a room with a stranger, or you may have to share a room with three strangers, but you will get some level of care.

The real consequence of not caring for this is talk to an EMT, an emergency medical technician, in any place in the United States. And they will tell you that it is not uncommon for them to get a call to someone's home. And they will discover that someone in that home, an older adult, or someone with disabilities, has died there and has been dead there for days, and no one even knew it until maybe the post-delivery person smelled something bad. That's the tragedy of these people who do not get the care that they need. Howard Gleckman on Let's Find Common Ground.

Next up are a conversation with Stuart Butler and Paul van der Wader on their strong differences over how to pay for long-term care and how they found common ground. I'm Richard. And I'm Ashley. This podcast is a production of Common Ground Committee and we're making this episode with cooperation and help from Convergent Centre for Policy Resolution. Convergence is a nonprofit group that brings together people from different viewpoints to build trust, find solutions, and form alliances for action on vital national issues.

As you'll hear in the second half of our show, the Convergence team brings skilled facilitators to the process, and attempts to inspire a collaborative mindset in others, and help those who want to use the process. Now back to our interview. We bring in our policy experts from different sides of the aisle who gradually came together on how to fund this type of care. Stuart Butler is a senior fellow at the Brookings Institution. He's a conservative. Paul Vandewater is a senior fellow at the Center for Budget and Policy Priorities. He specializes in Medicare, Social

Security and Healthcare issues, and his politics are to the left of stewards. Paul has worked on long-term care issues for many years. And like Howard Gleckman, this is personal for him. Personally, I've had involvement with long-term supports and services, particularly with my mother-in-law and her mother, both of whom developed dementia in their later years. And my wife, and to a lesser extent, myself were involved in caregiving and particularly

institutional setting for my mother-in-law so I've been very involved in a personal basis as well. Stuart? My main interest in getting into this issue is actually much more from the budget side. I've been very concerned about the growth of the federal deficit and the federal debt. been very concerned about the growth of the federal deficit and the federal debt. So, that was one issue in terms of the costs, particularly for Medicaid, but also I've worked in the health area. And so, looking at this from personal services and health care for old adults was another factor. And then also like Paul, I had personal experience too.

In this case, my father-in-law, who, while he didn't have any great special needs, had to live in assisted housing for a number of years. And he was literally running out of money with us, essentially, committed to support him when he did run out of money. He was literally running out of money at almost exactly the time that our older daughter was about to leave for university. And we were thinking about, in this case, you know, $50,000 a year for attrition. So it was like a double whammy for us. And I have to say that really brought it home to me that people in a middle class situation

really faced these enormous concerns. You worked with convergence, this is the convergence center for policy resolution that helped the process. Yes, I've been involved with convergence for many years. And the idea of convergence was to sort of tackle exactly these sorts of issues, where you have people all want to solve a problem, but have very deep disagreements or differences

about how to do it. And convergence uses professional facilitators and mediators. I sometimes call it, you know, like family counseling for policymakers. It uses these techniques to get people to, first of all, trust each other and explore their underlying motivations, if you like, and their goals and so on, and allow everybody to understand that as a prelude to really focusing on where the areas of commonality and also how can we address some of the areas of differences in ways that we can make progress. Tell us about the nature of the deliberations involved.

Even a few years ago when we were working on this issue, there were just deep disagreements and people who knew each other well were just as an own pass in terms of how to move forward. So it was an important ingredient, I think, in terms of how people like Paul and I and others could reach a significant measure of agreement by going through this process of really searching for visions of the future, our values, and getting to know each other in a way that allowed us to go outside our comfort zone. Paul, Stuart's been outlining how convergence work. Can you go in and describe how did the two of you disagree over long-term? How did you differ from each other?

Well, of course, at the end of the day, we came to a substantial agreement on a lot of these issues, but going into the process, I think Stuart and I had rather different perspectives. Stuart, as said to me in other contexts, that his initial preference was for emphasizing some sort of a private solution involving saving and private long-term care insurance. Based on my previous work in the topic, I concluded that the private long-term care insurance system wasn't working properly and it was unlikely to be able to be put back in working order on its own without

substantial federal involvement. So those were the two different perspectives that we were coming from to start with. And I think my reluctance, if you like, to embrace readily a government solution was partly philosophical. I'm a conservative. I'm not a big fan of increasing government. And I was also very concerned about the potential unfunded obligations of a government program. I mean, I've been working for many years on reforms of the Medicare

system and social security that do big programs have long-term deficits associated with them. And I was, if you like, in no move to say, let's add another one to this. For me, insurance was, if you like, the logical area to really build on private insurance, my instinct was very strongly in favor of looking to strengthen the weakened private insurance system and to build that up. Okay, so we've kept our listeners in suspense for long enough. We've heard about the disagreements, we've heard about the problems. What did you come up with as a solution? Paul, do you want to go first?

Sure. Well, I think what we came up with was an idea for the federal government to establish a catastrophic long-term care insurance program, catastrophic meaning, you know, a program that would not kick in instantly for the initial needs for long-term supports and services, but which would start to apply once people were incurring larger amounts of spending. Because in part, that was what the private long-term care industry was becoming increasingly unwilling to do. That is, it wasn't willing to take on open-ended obligations, which is Stuart said, could turn out to be quite substantial. And another piece is to make various improvements to the Medicaid program.

This was an issue which Stuart and Howard Gleckman and others were particularly concerned about as well, quite correctly. So we also proposed making improvements in Medicaid for those people who would eventually have to rely on that since to the extent of these other elements in our proposal proved not fully adequate. Stuart, you have anything to add? Yeah, well, of course, my initial reaction to that was not terribly favorable. Particularly the first part, I felt initially that this kind of programmer, the so-called limited federal catastrophic program, was sort of the nose under the camel's tent in a sense of, I mean, I've kind of been there seeing this small programs that just grow

and grow. I was pretty reluctant initially to go down that road. And then I think on the Medicaid area, Howard, that you've spoken to and myself and several others, I think were more interested in the Medicaid area of saying, how can we make Medicaid a lot more flexible in terms of how it operates? And I think the key to what happened in this conversation was us finding a compromise in that area. I think the central agreement on this government program designed to stabilize private insurance and also I would say reduced long-term costs for Medicaid by allowing middle-class people to avoid falling into

the Medicaid program. That was the linchpin of really everything that we agreed. Stuart, you come from a conservative background and your proposals really involve an expansion of federal government spending and federal government reach when it comes to providing for and helping people money that could amount to a very large amount. Do you have mixed feelings about that even now? Yes, I do. Even though I'm very supportive of actually legislation that's being introduced that would set up essentially the program we talked about. Yes, I'm very nervous about it and was at the time in terms of what might happen in the future. But let me make clear that what we didn't agree to,

those of us on the center right, was what some argued for in the convergence project, which was essentially to do away with private insurance and say, let's create some form of really an expansion of Medicare to provide long-term care services and do so very generously. Paul, can you give us a sense how did this process of compromise feel to you, and particularly interested in the, you know, what convergence does and how that feels to you as a participant as you work through these issues with people who feel differently than you.

We all agreed that we wanted to work together in a way that everyone could be content with. So there was a basic amount of goodwill that was there from the start, and then the discussions, which in fact extended over several years, the initial notion of what Stuart was that this project was supposed to be finished in, what was it, 18 months, so it was some brief period of time, but it extended far longer than that, but in part because we thought we were making progress. Part of that progress had to do with data. With outside help, the group developed a data model that helped them come up with estimates of what long-term care costs would look like under various scenarios. Before that, different members of the group would often argue over the numbers.

So that was one hurdle cleared. But Stuart says he and others would get frustrated with Paul because they thought he was digging his heels in on Medicaid, resisting ideas they wanted to implement. In terms of reaching agreements, some of the more conservative people in the group said, okay, look, we're going to swallow this big item called a new federal program. If we're gonna do that, we want to see some of the changes that we think are necessary in another entitlement program, Medicaid. We want our side to be

represented in the agreement as well. More particularly, which we found really confusing when we're talking to all of us want to see more flexible, we want to see Medicaid able to cover things and to Medicaid funds to be used in dealing with a lot of other issues that were non-medical associated with older people, transportation, other services and things like that. And he kept pushing back on this. And Howard and I in particular, I would say, we don't understand why you're, this is a perfectly reasonable idea.

I think for many people who worked like Paul in Medicaid for so long, and so hard, and just all these incremental steps that they had to use to move the program forward. They were very nervous about the idea of opening up this program and saying, okay, let's use the money a little differently. They were very concerned that the basic sort of existential nature of Medicaid might be undermined. And I think I really began to understand that after a conversation, particularly with Paul, but some others.

And it affected me both at the time, and I think how it too, we kind of backed off, because we said, okay, we understand a little bit better now why you are so intrangible about this. And it's affected me since, because even now I think I'm much more sensitive to that when I'm involved in public policy conversation. So it's been a lasting impact on me. Well, Stuart has expressed that very, very well and very kindly, and they've said until recently, I'm not sure I appreciated how entranjages I may have

seemed at the time. We are passionately divided as a nation. Do you learn lessons? Can we learn lessons from how you came together and found some areas of agreement? I think the core of this, and I think it's exemplified in just our conversation today in terms of the issues that we looked at, is the importance of listening to the other person first before you start pepping them with questions or arguing with them. One of the reasons the convergence projects do actually last so long, it's not like we get together for one weekend and try to hammer out a deal, you know, which is often the conventional thinking about how sides get together. You know, it took a long time to really understand each other. We probably all agree that one of the big dangers that we're seeing now is that people are not listening to each other. Not only that, they tune into different television programs, networks that just tell them what they already believe.

It's an enormous challenge that we face, but I don't know any other alternative. Thank you, Paul, and Stuart, for sharing your ideas, your thoughts with us on Let's Find Common Ground. Thank you. Thanks. Yeah, thank you very much. Paul Van der Wörter and Stuart Butler on Let's Find Common Ground. Convergence recently published rethinking care for older adults.

It's a report that came out of a series of conversations that Paul and Stuart and Howard and others were involved in. It has recommendations on improving care, housing, and services for older Americans. We'll be back with another episode in a couple of weeks. I'm Ashley Melntite. I'm Richard Davies. Thanks for listening. This podcast is part of the Democracy Group.