TONYA MOSLEY, HOST:
This is FRESH AIR. I'm Tonya Mosley. Something has shifted in my conversations with friends lately. We still talk about work and our kids, but more and more, we also talk about our parents - whether it's safe for them to keep living alone, who's taking them to the doctor, how much help they really need, and who's going to pay for it. It turns out a lot of us are paying for it ourselves. A new study from AARP finds that family caregivers are spending nearly 60% more out of their own pockets than they were just five years ago.
And the timing matters. The oldest baby boomers turn 80 this year. They're the leading edge of a generation so large that the number of Americans 80 and older is expected to double in the next two decades. That means millions more people likely to need care just as nursing homes are losing beds, professional caregivers are in short supply and Medicare provides limited coverage, if any, for long-term care. We've known for decades that this was coming. But knowing doesn't necessarily mean families are prepared for what lies ahead.
My guest, Paula Span, has spent nearly two decades reporting on aging for The New York Times in partnership with KFF Health News. She writes about the hard choices families face, the gaps in our elder care system and the inventive ways Americans care for one another. Paula Span, welcome to FRESH AIR.
PAULA SPAN: I'm so glad to be with you to talk about this, Tonya.
MOSLEY: According to the study, and so many people know and understand this, the burden is particularly heavy for lower-income families. What do families sacrifice when care takes up so much of their budget?
SPAN: It's harder for low-income families. And it's harder for anyone whose loved one has dementia. So most of these family caregivers are trying to hold onto their jobs - they're still working. But as the loved one's care needs increase, they have to take days off. They might turn down promotions or limit their travel. Sometimes they cut back to part-time work. And sometimes they leave the workforce altogether, which then imperils their own financial futures because they have no income for a while and because they're not earning credits towards Social Security.
And this analysis is not looking at the cost of elder care itself if, besides the family, someone is using home care or is in an adult day program. So I looked up the most recent cost figures. This comes from an annual survey by the insurance company Genworth and CareScout. If you are paying a home care aid - not a nurse, but someone to help with bathing, dressing, making meals, using the toilet, this is what we call long-term care. And it's what most people actually need. A home care aid is going to be $35 an hour. That's the national average.
An adult day program, which is an unrecognized bargain, in my opinion, is $95 a day. Assisted living, you're looking at $6,200 a month. A nursing home, that's the most expensive form of elder care, $9,600 a month and you get a roommate. If you want a private room, it's more expensive. And this national average conceals some big geographic variations. So Assisted living may run you $6,300 a month in Birmingham, Alabama. But if you're in Boston, it's closer to 10 grand.
MOSLEY: You mentioned adult daycare. Can you describe what that is?
SPAN: Adult day programs. I find that a lot of people don't know about this, but there are thousands of them around the country. It's a program in which the elder person goes to a center of some kind with other older people. And there are activities, and there are meals, and often there's a nurse on site, not always. There are discussion groups. They do art. They do exercise. And then the center usually provides transportation, brings you there, takes you home. So that if you're the working caregiver, you feel that your elder is engaged with other people, not sitting at home alone watching TV, and is in safe hands until the end of the day.
And, you know, it feels funny to call something that costs a hundred bucks a day a bargain, but compared to other forms of caregiving, it is. And I find that most people don't know about it. Plus, you don't have to use this every day. Maybe it's two days a week or three. And Medicaid can cover this often. And if you're a veteran, there are special programs and discounts for you also.
MOSLEY: You've actually written about helping your father move into a retirement community. And later, you helped your sister move into assisted living. How did all those years of reporting on aging prepare you?
SPAN: So I will say that both my parents made it comparatively easy because they did not have long years of disability. They were OK, and then something happened and they weren't OK, and they died fairly quickly. So it's odd to think of that as easy or making my life easier. But compared to people who are caring for parents for four years, six years, eight years, it was simple.
And also, I got to say, my parents were very realistic. They weren't the ones saying, the only way I'm leaving my house is feet first. They had already moved from a house to an apartment. My father said he didn't want to stay at home alone. It was too isolating. And so we started looking at assisted living. And it was cheaper down where he lived, compared to where I lived.
But then he thought, well, if something happens, I'm just going to have to move anyway. So we moved him from south Jersey, about 100 miles north to north Jersey, where I was. And I used one of these folks called a geriatric care manager. They're now called aging life care managers. But when you hear adult children, especially daughters, who are maybe flying back and forth to Florida or giving up their weekends to take care of their mother, and they say, I wish I could clone myself, this is how you clone yourself.
Now, my sister and I shared the cost. We hired one of these folks. They are usually nurses or social workers who have additional training and certification. And they're the ones who know, well, which assisted living in this particular area is the good one? Which home care agency should I call? Who's going to get on the phone and fight with Medicare about this bill? How do I arrange to get my father to the dentist when he shouldn't be driving? So we hired one of these folks to help us because when we started having little tiffs about whether he really needed to take both of his flashlights or whether one was enough, sometimes it's easier for elders to listen to another person besides their own kids.
So she helped us move. She helped us find the facility that he moved into up near me. It went fairly smoothly, I have to say. But, of course, it's never easy to see the people that you've looked up to or depended on your whole life now need your help and be dependent. You know, America, we really value independence. And parents will and other elders will downright lie and tell you on the phone that they're fine and they're handling everything, and you can just butt out, thank you. And then you go home for Thanksgiving or Christmas, and you see the reality and think things are not fine.
MOSLEY: Geriatric care managing, is it expensive?
SPAN: It looks expensive. I think people may misunderstand what they do. So I wrote about these folks, geriatric care managers. They're now called aging life care managers. And if people want to find out if there are some in their local community, there's a locator on the Aging Life Care Association website. So yes, they charge $150 to $300 an hour, depending on where they are.
But they're not the people that are making you a sandwich or helping you get dressed. They're the people who are coordinating all of those other services. So they can do a lot in an hour, and you don't need them 10 hours a week or even 10 hours a month.
So in my case, when I needed help for my father or when my sister needed help, they were on the job - these care managers - to help them move from their homes into assisted living. But after that, they stopped by, you know, once a month or every other week just to check on them. And for me, I was sure that every time I left home for a vacation or a business trip, that's when my dad would get sick. And I was worried about this. And so to have someone else local that I could call and say, gosh. I'm in Tuscaloosa, and my dad's having chest pains - and they would leap into action.
So it is expensive. And when I wrote about it - you know, we enable comments on "The New Old Age" in The New York Times. And, you know, a bunch of people said, hey, I never knew about these people. That's great. Thank you. They call themselves - these care managers call themselves the best-kept secret in elder care. But a bunch of other commenters were saying, oh, thanks a lot, Paula. Another service for rich people.
MOSLEY: Right. Yeah.
SPAN: And, you know, yes. It - you know, there are more services for - not necessarily rich people, but people with money. I'm not a rich person, but my sister and I split the cost of having this available for my dad, and we could handle it.
MOSLEY: You know, I'm listening to you, and I'm also thinking about - in the case of your loved ones, it sounds like you had to get everything right, though. You had this case manager, so that helped you. But missing one piece of paperwork, for instance, or not knowing the full details of your parents' health conditions or how they're handling their business could completely derail what you're able to offer them and how you're able to help.
SPAN: Well, nobody is really prepared for this. You know, there was a survey a couple of years ago by KFF, which is a nonprofit health research organization. And it asked a bunch of people, have you ever had a serious conversation with your loved ones about what would happen if you needed care and who would provide it in the years ahead? And most of them said, no. We don't talk about that. And then the kicker - yeah. KFF asked this group, well, would it be possible for you to pay $100,000 a year for a nursing home or $60,000 a year for assistance at home? Could you do that? And the overwhelming response was, essentially, are you serious? Who can do that?
So we're laboring with a lot of misconceptions and evasions because we don't want to think about being dependent and being old and asking our kids or our siblings or someone else for help. One of the misconceptions you mentioned is that a big proportion of people think that when you need this kind of help, you will turn to Medicare. But Medicare does not pay for this kind of long-term care except for brief coverage after hospitalization. Not the kind of...
MOSLEY: Why?
SPAN: ...Daily help. It's just never been part of the benefit. So Medicare pays for hospitals and doctors and medical care. But what most people need as they age, if they need it, is not medical care but nonmedical care. Help me to the bathroom. Help me get dressed. Help me in the shower so I don't fall and break something. I'm not so good at making meals anymore. This is what we call long-term care. And the data shows that something like two-thirds of us will need this, and we'll need it for an average of three years. So if Medicare doesn't pay for that, well, then who does pay for that?
MOSLEY: Well, that's - yes, because, I mean, I've heard that Medicaid can become the safety net. But what happens if you've worked your entire life, you've saved some money and now you have too much money to qualify for Medicaid, but you really don't have enough to pay for years and years of care?
SPAN: Well, Medicaid is the safety net if you are very low-income. You basically - to become eligible, you basically have to impoverish yourself. You can hold on to a house, but you have to have something like $2,000 in assets. So it's hard to get, and Medicaid has a waiting list in most states that can be months or years. Plus, the Trump administration budget calls for slashing Medicaid expenditures over the next decade by about a trillion bucks.
So we have this disparity - it's something of a familiar one - where if you have means, you can pay for your own care or your parents' care. You can pay for assisted living or a nursing home or home care. And if you're very poor, you can rely on Medicaid, though it's not always instantly there when you need it. But most people are in the middle somewhere, and who pays for them? Well, they're essentially on their own.
MOSLEY: My guest is Paula Span. She writes "The New Old Age" column for The New York Times in partnership with KFF Health News and is the author of "When The Time Comes," a book about families making difficult decisions about caring for aging parents. We'll continue our conversation after a short break. This is FRESH AIR.
(SOUNDBITE OF RHYTHM FUTURE QUARTET'S "IBERIAN SUNRISE")
MOSLEY: This is FRESH AIR. And today, I'm talking with journalist Paula Span, who has spent nearly two decades reporting on aging and elder care. She writes "The New Old Age" column for The New York Times and KFF Health News. She previously spent 16 years as a correspondent and magazine writer for The Washington Post.
So let's talk a little bit about how families pay if they are not at the lower rung economically and they don't have wealth to be able to care for their loved one. This AARP study found that adult children are sometimes borrowing. Some are pulling from their own retirement accounts. How often does caring for a parent end up costing someone their own retirement?
SPAN: I've not seen any data on that, but families are just trying to patch it together however they can. And it's harder than it used to be in decades past because families are smaller. You know, people have fewer children. So if you had four kids, maybe they could divide up the duties and share the expenses. But if you have one or two, that's harder. It goes on for longer because medical science can keep us alive longer. And we're asked to do things that nurses used to have to do, like give injections, manage medications, maybe even administer things intravenously.
So it's tough, and I think people scramble. They borrow where they can. Sometimes the parents do have money - not enough, but some - so they tap that. People switch off care so that you can take a break. Maybe your sister comes and stays for two weeks so you can have a few days off. But I don't think there's any magic wand. People suffer.
MOSLEY: It's suffering, absolutely, because I'm also just thinking about, OK. You might have enough money to pay for the care of your loved one for, say, a few years, four or five years. But then, after that, you're going to completely dry up any type of wealth or savings that you have to continue to keep them comfortable. And you don't want them to die, but you have to deal with this reality that you're putting your own future in jeopardy. What have you found in your reporting about what the realities are for people who spend so many years doing this and their outcomes on the other side of it?
SPAN: I mean, there are times when, if it's a peaceful death, it comes as a source of sorrow but also of relief because this stress on both the elder, who's not well, and on the people taking care of them is so intense. And to have it end, and if it ends in a way that people can live with, is sometimes a blessing. But I also think families need to be aware that not every older person actually wants to live forever and that the medical system is geared towards keeping people alive at all costs, unless you have a palliative-care physician, which is a great thing to have, who helps people just manage the symptoms and is not trying to keep people alive forever. Or if you have a geriatrician, who's - like, a pediatrician is the doctor for kids, right? A geriatrician is the doctor for older people, and they have a more holistic view.
But it is not necessarily in an older person's interest to pursue every possible attempt at cure, and older people have said this themselves. There have been studies on this - would you give up a year of your life to pursue some experimental treatment or procedure? And often people say, like, no. I've had enough. I've had a good life. I feel that my life is complete. We don't have to keep pursuing this. You can stop dialysis. You can not start dialysis. You can say, no. I don't want more chemotherapy. You can have some control if you have mental capacity, and your family can support you in this.
Often, geriatricians tell me it's not the older person him- or herself, but it's the family that is saying, no. We have to try something else. We can't just stop. But you can stop. And personally, I have made hyper-clear to my one and only daughter that, you know, the answer to almost everything if I'm truly sick and at advanced age is, no, thank you.
MOSLEY: Sounds like you and your daughter have had the conversation that many families have a hard time having.
SPAN: Well, we couldn't avoid it when I've been doing this work for so long. So yes. We've had many conversations, and she knows exactly what to do and not do. And - but she did say, Mom, do you have to keep your advance directive on the refrigerator (laughter)?
MOSLEY: Oh my gosh.
MOSLEY: You keep it on the refrigerator (laughter)?
SPAN: I said, yes, that's where I have to keep it because if I go down and the EMTs come in, that's where they're going to look. So she said, OK.
MOSLEY: Is that your advice to people?
SPAN: Well, first of all, older people should have advance directives that tell their families what is important to them and what they want and don't want. You need to appoint someone that you trust - doesn't need to be a family member - to be your healthcare proxy, to make decisions for you if you're incapacitated and you can't make them for yourself.
And then if you have a serious illness and it seems that death is a real possibility, then you need a different kind of advance directive that every state has and is either called a POLST or a MOLST. It's Physician Orders for Life-Sustaining Treatment. That's what it stands for. And it's even more detailed. So, do you want antibiotics? Yes/no. Do you want cancer treatment? Yes/no. Like, spell it out for us. Because we do have some control. If we have mental capacity, we do have some control over what we're willing to undergo and not.
MOSLEY: Our guest today is journalist Paula Span. We'll be right back after a short break. I'm Tonya Mosley, and this is FRESH AIR.
(SOUNDBITE OF BILL FRISELL, PAUL MOTIAN AND RON CARTER'S "EIGHTY ONE")
MOSLEY: This is FRESH AIR. I'm Tonya Mosley. And my guest today is Paula Span, who has spent nearly two decades reporting on aging and caregiving for The New York Times in partnership with KFF Health News. We're talking about the growing challenges families face as they care for aging loved ones. A new AARP study finds that family caregivers are spending nearly 60% more out of pocket than they were just five years ago. And those costs are rising as millions more Americans enter the years when they are likely to need care. Span writes "The New Old Age" column, and she's the author of "When The Time Comes" about families navigating difficult decisions over caring for aging parents.
Paula, you know, one of the most startling discoveries from your reporting is that our country isn't just running out of affordable care. In some places, it's becoming harder to find care at any price. You actually reported on a nursing home in the South Bronx that hasn't admitted a new resident in several years now - I think since 2024. Why are nursing homes actually reducing the number of people they can take?
SPAN: Well, they will say it's because Medicaid, which is the primary payer for nursing home care - they will say that Medicaid doesn't pay enough and they need more money. But I think the more salient reason is they don't have enough staff. So when a nursing home says, we have so many beds, are they able to staff all those beds? A lot of nursing homes have closed - about 1,000 in the past decade. But a lot of those that are still in existence are closing wings, and it's because they can't find enough staff.
Now, long-term-care facilities have been understaffed forever. But it's getting harder to find folks, partly because the wages are still pretty low. An aide in a nursing home is probably making 20 bucks an hour, and that person can make $20 an hour somewhere else with a much easier job. And it's also true that since the pandemic, a lot of these folks left the direct-care workforce and went elsewhere.
And then probably one of the least helpful things that the federal government could have done was to start coming after immigrants, because immigrants are more than a quarter of the direct-care workforce in assisted living and nursing homes, at home. And when those folks, even when they're legal residents, start feeling threatened or afraid, they leave those jobs.
And in some parts of the country, we're already starting to see the effects of this Trump administration immigration crackdown. In New York, for example, where I am, a lot of Haitians work in healthcare. And when their protected status was revoked, the people who are running these institutions and these companies were saying to me, I don't know where we're going to find the staff.
MOSLEY: It's significant. I mean, a third of the direct-care workforce are immigrants.
SPAN: Correct. And in order to be hired at these places, they have to have legal work authorization. But there's this other form of finding care at home that's sometimes referred to as the gray market, where instead of going through an agency, you hire people directly. And if they're people that your friends or your relatives have used, this can be a good arrangement without that middle agency taking the profit. You can pay them a little more than the agency would, but you're getting a discount because you're not paying the agency. So if you're giving them $30, they're getting $30. If you're giving the agency $30, they're getting 15. So that workforce probably has more people in it that are undocumented, and that's probably harder to find now too.
MOSLEY: How have these nursing-care shortages impacted other types of medical facilities like - I guess like hospitals?
SPAN: Well, during the pandemic, I think it impacted everybody. Hospitals also are advertising for nurses. If you're a nurse, you can work anywhere you want in this country, and there will be bonuses when they hire you. And if you refer your friend who's a nurse, there'll be a bonus for that. Partly, it's just very hard work. And when an institution is understaffed, it's harder work. And nurses get paid very well, but aides and janitors and the people that work in food service - they don't get paid very well. And when they're able to go to work for retail and go drive for Uber, that's easier, and you don't feel like you're holding someone's life in your hands. So people leave.
There's - the turnover in nursing homes and assisted living is astounding. It can be anywhere from 50% to 80% in a year. And that's not great either because if you're in a facility like this, you want to know the people that are doing these very intimate tasks for you. Or if you're at home, you want to know that the person who's helping you take a shower is going to be the same person next week and the week after. And when there's this huge turnover, the continuity of care suffers, and it's just less comfortable for the person who needs help.
MOSLEY: I was also thinking about - when it comes to hospitals and the nursing-home shortages, can someone be well enough to leave a hospital, say, but then there's no nursing home or assisted-living facility for them - to take them in? That's conceivable when there are these places that don't have enough workers. They have beds, but they just can't accommodate. What happens to a person like that?
SPAN: Well, hospitals are upset about this because they already are feeling the pressure to keep people longer, even if they're really ready for discharge, because it's not safe for them to go home. And there's no room for them in a rehab or a nursing facility because they're understaffed. And also, we're not building nursing homes anymore to any great number, and they're closing. So there's a shortage of beds, aside from the staffing issue. So people are spending more time in hospitals, which is the most expensive place to be, because there's nowhere for them to go.
MOSLEY: You know, I really know this well because my mother took care of my grandmother for a decade, and now she is needing care. And I'm just thinking about how gendered this is because women carry so much of this burden. I see that they are statistically a significant portion of the healthcare workforce. They are a significant portion of the people and families that take on the burden of care. I mean, essentially, we've built a system around the assumption that women will do this work whether they're adequately compensated for it or not.
SPAN: It's completely true. This is a woman's issue. The - yes, it's true that most of the direct-care workforce is female. Also, most of the family members who take the lead and carry the heaviest burden are also female. So first wives, whose husbands tend to be older, so spouses are the first ones to step in. And then when it's children, it's more apt to be daughters and also sisters. It's about two-thirds female for family caregiving. And when I have encountered men who are handling most of the work for caring for their parents, it's often because this is a family with no daughters. But, you know, to be fair also, it is easier to do this work if you are the local one. So the local person, regardless of gender, is probably the one who's going to step in versus the one that has to fly in across a couple of time zones.
MOSLEY: My guest is Paula Span. She writes the New Old Age column for The New York Times in partnership with KFF Health News. We'll continue our conversation after a short break. This is FRESH AIR.
(SOUNDBITE OF GERALD CLAYTON'S "ENVISIONINGS")
MOSLEY: This is FRESH AIR. And today I'm talking with journalist Paula Span, who has spent nearly two decades reporting on aging and elder care for The New York Times and KFF Health News.
You've been writing this column for several years, and I'm just curious, is there a question that you hear over and over from readers who are trying to figure this stuff out? Particularly how to pay for loved ones' care.
SPAN: Well, the question that comes up a lot is, what if you don't have a family? What if you're a so-called solo ager?
MOSLEY: Yes.
SPAN: You're single or divorced or widowed, you didn't have children, or you have children but you're estranged from them. There's no one who's the appointed person to step in if you need care. Our system depends so heavily on family caregiving. We still have this age-old sense that this should be for the family. This is not a government responsibility. But many older people live alone. They are more likely than in past years to be divorced. Families are smaller. Sometimes the ultimate horror - your child dies before you do. What do they do?
There are cases where friends try to arrange this. They kind of make a pact to help each other out, but they're often fairly close to the same age and aging together. So that helps. I've written about friends as caregivers. It's a wonderful thing. They're different, though. They can't necessarily be in it for the long haul. They provide different kinds of care. They'll drive you to the doctor, but they might not be able to help you take a shower. And the last time I wrote about a group of friends like this in northern California who had sort of organized themselves to take care of one of their friends who needed help, one of the helpers said to me, but I'm 86. I don't know how much longer I'm going to be driving myself.
MOSLEY: It sounds like a temporary backstop, where friends are helping each other, but ultimately, it comes to a point where everyone needs help. What actually happens in those cases, though?
SPAN: I really don't know. I would assume, in this case, that maybe the woman spent down her assets - that's what they call it - qualified for Medicaid and went into some kind of institution that Medicaid would pay for. So far, they're still handling it. But I think you're right. It is a backstop for a while, but ultimately, if you need long-term care, I don't know that friends are able to provide it.
MOSLEY: You've actually been spending time with people in their 80s for a new book that you're writing. Is that right?
SPAN: Yes, and it's been such a hoot. And there's some good news here that I would like to preview, which is people can have great lives in their 80s. They can have productive and meaningful experiences. We are healthier and better educated and less disabled than previous cohorts of people in their 80s. I'm finding it actually - as someone who's on the cusp of 80 herself, I'm finding it really encouraging and reassuring, and I'm having a great time spending time with these older folks who are only slightly older than me. And I spent a couple of days in a middle school in the Florida panhandle with a special-ed teacher who was 81, and it was a hoot. Every year, she tells her principal and her daughter, I think this is my last year, and then every year, it's not.
MOSLEY: (Laughter) What's the big takeaway that you took from her life?
SPAN: Well, if we're going to have good lives in our 80s - and I think this is completely possible - we have to think about old age differently. And one of the things that we need - that everybody needs, but I think old people need too - is purpose. A reason we get up in the morning. Something that gives us a feeling of being useful and needed and connected to the world. I don't think that just endless leisure is a prescription for a good life in the ninth decade. That's the title I'm going with - "The Ninth Decade."
So purpose is one of the things I'm writing about, along with things like how you leave your legacy, how you have social connections beyond your own family, how you have to think differently about your healthcare decisions and that sort of thing. And of course, it's a great roadmap for me. Now I know what I (laughter) should be doing myself.
MOSLEY: Yeah. You know, I mean, I can imagine this is a significant shift from the generation prior to your parents' generation, where, I mean, the messaging is essentially you retire and then kind of go off into the sunset in a way.
SPAN: Yeah. And, you know, maybe that was good advice when you retired and then you lived another five years or six years, but people who retire in their mid-60s are looking at an average of 20 years, and I don't know that we just want to be at leisure for 20 years.
MOSLEY: The big challenge, though, right now is - yes, 20 years of retirement is not the answer, in part, too, because who has 20 years of living expenses saved up? You know, I mean, just looking statistically at Americans. And then, also, though, you have to think about health challenges that you can't really forecast. I mean, those are the biggest challenges right now as people live longer.
SPAN: People live longer. And yes. It's true. When I talk about having a good life, you know, at older ages, I don't mean necessarily that you're skydiving or, you know, running marathons. But people can adapt to their disabilities, too, and still have good lives. You're correct that most of us don't have a whole lot of retirement savings. I saw the Federal Reserve reports on this. And so the average IRA or 401(k) that somebody had in 2022 was about $200,000. That's not going to pay for a lot of long-term care. And so retirement savings are often not adequate to this.
So it's that same disparity that we see in paying for long-term care. You know, if you have money, you can - it's easier to have a good life at an older age than if you're trying to stretch your Social Security check into Weeks 3 and 4. And a lot of people are in that situation.
MOSLEY: My guest is Paula Span. She writes "The New Old Age" column for The New York Times in partnership with KFF Health News. We'll continue our conversation after a short break. This is FRESH AIR.
(SOUNDBITE OF CHARLIE HADEN'S "EL CIEGO (THE BLIND)")
MOSLEY: This is FRESH AIR. And today, I'm talking with journalist Paula Span, who has spent nearly two decades reporting on aging and elder care. She writes "The New Old Age" column for The New York Times and KFF Health News. She previously spent 16 years as a correspondent and magazine writer for The Washington Post.
I've been reading about some of the ways that different states are taking this on. So Washington state, for example, has started paying benefits through - I guess it's kind of the nation's first state-run long-term-care insurance program. So people can actually pay into that and benefit from that in the years to come at - once they reach retirement age. Could that be the beginning of kind of a different way to pay for care in America?
SPAN: You're right. Washington took the lead here with its program called WA Cares. And other states are now looking at that too. Washington instituted this program a few years ago and then, just this past summer, started paying out the first benefits. So they are financing this with a very small payroll tax, but it is mandatory for all workers. And then after you qualify for benefits, you get - it's a small amount still. Thirty-six thousand dollars is your lifetime benefit, but it's indexed to inflation. So this is not the complete solution. But oftentimes when there's some paralysis in federal programs, states take the lead. So Illinois and West Virginia and Hawaii are also looking at this - can we do it with a state program?
Also, there are now a lot of different initiatives as it belatedly dawns on us that, well, we'd better make some changes here. So Medicaid now, in every state, will pay a family member to provide care for your loved one. And...
MOSLEY: Regardless...
SPAN: This...
MOSLEY: ...Of your income level?
SPAN: Yeah. The person who's receiving the care has to have low income, but the other person doesn't. So if you feel like - I can't keep my full-time job and take care of my aunt or my mother or my father. I am going to have to cut back to part-time, and that's going to be a real sacrifice. But why can't Medicaid pay you to take care of your elder, who would much prefer you to having a stranger, as opposed to someone from an agency or someone that your elder doesn't know or trust? So this is still small, but it makes a lot of sense. And it is now available in every state, although I'm sure the funding is still limited.
Then there are a whole bunch of proposals to provide tax credits or Social Security credits if you're caring for an elder so that you're not risking your own future Social Security benefits by being out of the workforce, or maybe direct stipends to the elder to spend as they want to. A - here are efforts in Congress. A bunch of Democratic senators are trying to devise a plan for some kind of guaranteed home care through Medicare. This would be a whole new benefit. All these things are going to take time, and there will be probably the usual suspects opposing them.
But, you know, we are an outlier here. Other developed countries just handle this better than we do. It is possible. If you live in Holland, where I think sometimes all of us say, oh, that sounds so rational, it is just part of the national healthcare system. In the same way that, you know, the national healthcare system pays for doctors and drugs, it pays for long-term care. In Japan, everyone over the age of 40 is required to buy long-term-care insurance. And half the cost is paid through tax revenues, and the individual pays the other half.
Now, long-term-care insurance barely exists in this country anymore. It used to be a product. I bought it through my credit union years ago, and I am not letting go of it. But many of the big insurance companies got out of the market. They were not making money. And so very few people have it. But in Japan, everybody has it. So these countries pay a bigger proportion of their, you know, gross domestic product on long-term care than we do. But it is not universally true around the world that families are saying, oh my God. What are we going to do?
MOSLEY: How much of this crisis or challenge is also up against what is culturally American? Individuals moving away from family, moving - we're all so far away from each other. I'm just thinking about - there are some cultures - even my own family generations ago all lived in the same city. There was a unit that expanded to extended family. And all of that family was part of, like, a connective community that would look out for each other and care for each other. Even multigenerational households less and less common today.
SPAN: Actually, multigenerational households are making a comeback.
MOSLEY: Because it's so unaffordable to live today, yeah.
SPAN: Also, I think, because immigrants bring some of their culture with them. And you're right, it is more common in India or Latin America for families to live together. And when people come here, they bring that with them. So that is increasing. But also, people are trying different ways of doing it. So, you know, it's sometimes difficult to live with your family member who needs help. But in some places around the country, it's getting easier to build what's called an accessory dwelling unit - an ADU. Like, over your garage, add on a room, you know? Or convert your garage to a dwelling unit so that your elder can live in your backyard.
I think there are a lot of these green shoots around, like, people trying things, different kinds of senior living. Nursing homes are probably going to be always part of our healthcare system. It's not really where anyone wants to live. People don't want to live in institutions if they can avoid it. So I wrote about, sometimes it's called "Golden Girls" housing, about shared housing. You know, a lot of older people want to stay in the home where they raised their families. And they don't need four bedrooms or three bedrooms and two baths, but they don't want to leave. And the cost of maintaining it is getting harder. And maybe their children are worried about their living alone.
So there are programs around the country. You can look it up. Shared housing that help people find tenants, in effect, roommates to move into their spare rooms, to pay them some income. But it will be far less than if these people need to be on the housing market. There's someone in the house, could be your age, could be younger, could be older. Maybe they help out with the driving or the grocery shopping. There's all kinds of arrangements.
These organizations make sure that they're vetting people, that they're financially able to pay what you're asking, that nobody has a criminal record, nobody has a drug record. And I think this is a perfectly great idea. And I spent some time in Sausalito, California, with a woman in her 80s. Her daughter was worried about her living alone. She didn't live close enough by. The mother didn't want to move away from the town where she had lived most of her adult life.
She had an extra bedroom, gorgeous house. I wanted to move in myself. An extra bedroom and bathroom. And through this home share program in Marin County, she acquired a roommate to live with her. She didn't really need the money, so she only charged $500 a month. That is affordable housing in California or anywhere. It's just a great idea. It needs to scale up. And so there is legislation around the country to make it easier to do this so you don't run afoul of the zoning laws or things like that.
MOSLEY: Paula Span, thank you so much for this conversation.
SPAN: It's been distinctly my pleasure, Tonya. Thank you.
MOSLEY: Paula Span writes The New Old Age column for The New York Times, in partnership with KFF Health News. On the next FRESH AIR, Jordan Firstman's new movie, "Club Kid," was a hit at the Cannes Film Festival. The film is about a gay party promoter whose life is upended when he discovers he has a young son. Firstman talks about becoming internet famous as a comedian during the pandemic, starring in the HBO series "I Love LA" and how his own life in the club scene inspired his new movie. I hope you can join us.
To keep up with what's on the show and get highlights of our interviews, follow us on Instagram at @nprfreshair. You can also check out our YouTube channel for video interviews and archival gems. FRESH AIR's executive producer is Sam Briger. Our technical director and engineer is Audrey Bentham. Our engineer today is Adam Staniszewski. Our interviews and reviews are produced and edited by Phyllis Myers, Ann Marie Baldonado, Lauren Krenzel, Therese Madden, Monique Nazareth, Thea Chaloner, Susan Nyakundi, Anna Bauman and Nico Gonzalez-Wisler. Our digital media producer is Molly Seavy-Nesper. Roberta Shorrock directs the show. With Terry Gross, I'm Tonya Mosley.
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