Money Talks: The Cost of Caring
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Hello, and welcome to Money Talks, a special extra podcast from Slate Money, where we chat with brilliant and interesting people. I'm Emily Peck. I'm a correspondent at Axios and co-host of Slate Money. And I'm here today with Harold Pollack. He is the Helen Ross Professor at the Crown Family School of Social Work Policy and Practice at the University of Chicago.

And he's the co-author of The Index Card, which is this amazing personal finance book that all started from literally just an index card that Harold jotted down. Harold, welcome to Money Talks.

Oh, thanks so much for having me. It's great to talk to you, Emily. You actually, you messaged Felix about coming on the show, but the topic you wanted to talk about is like one that's very, just really personal and important to me. And that is the cost of caring for someone in your family or a close loved one who is disabled or elderly and how that care can just radically, profoundly change your life and your finances and the way you see the world and the government and just everything.

I mean, it really can radically change everything. And that's something that's really has mattered to me since I was growing up because I grew up with a mother who was disabled. And Harold, I can't wait to talk to you about this because you have been caring for your brother-in-law, Vincent, for so long, you and your wife.

But I also, if there's time, and I'm promising listeners there will be time, we have to talk about the index card and, you know, see if personal finance advice in 2025 is as simple as it was when this book first came out, I guess more than a decade ago. So we'll get into all that after the break on Slate Money Talks.

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Okay, so Harold, let's maybe start with your brother-in-law, with Vincent. When did he come to live with you and why? Start us off there. So I was a professor at the University of Michigan, and then I was offered a job at the University of Chicago and moved to Chicago in the fall of 2003. And then four months after we arrived...

My mother-in-law died suddenly and she had been caring for Vincent in her home. And so we had to move Vincent unexpectedly into our house in, you know, in the South land of Chicago and have the new responsibility of taking care of him. I should say my wife, she's really the person who takes care of him the most. He now, he now lives in a group home, but when he was living in our home, she bore the brunt of that responsibility and, and,

had tremendous impact on her career. And I had to think about personal finance in a completely different way than I really had before. I had gotten to the age of 40 and I really had just never thought about this stuff before. And then all of a sudden I had a family financial crisis, you know, that was really quite challenging. So Vincent has something called Fragile X Syndrome.

And that's the most common inherited form of intellectual disability. And when he moved into our home, he was about 38. And one of the challenges that we have as a society is when we think about intellectual disability, we so much think about children and young adults. And the idea that people actually have an entire lifespan is something that we really haven't grappled with.

and all the issues that come up with that and taking seriously the humanity of our friends and neighbors who are and loved ones who live with these disabilities.

So he came into your home and you said that sort of brought on a financial crisis. I mean, why? So we had the expenses of taking care of him, all the things we had to do to fit our house so that he could live there. And my wife could no longer go out and earn the money. My wife's a clinical nurse specialist, but she had to give up that component of her life so that she could care for her brother. And she's done an amazing job

of doing that, but it's very costly. And I was a professor. I was a tenured professor, fortunately. I was a tenured professor of a school of social work. If I had been a business school professor, it might have been a little easier. But I remember thinking, I got to actually take money seriously and financial planning seriously and investment seriously. And I had all the skills that I could have deployed to learn about that stuff, but I just had never done it. I can't believe I'm only thinking about this now, but

I mean, it was your, Vincent's your wife's brother. So just along that vector, it makes sense. She's the one who steps back from her job. And so often in cases like this, it is the sister, you know, the daughter who does caregiving. Was there ever a conversation where it was like, well, Harold, I guess you were tenured. So like, that would be crazy to walk away from a tenured position to do what she did. Oh, I should say that in 5 billion ways, it made me aware of all of the

gender issues that I knew at some level were important, but that were never about me. I mean, just the way that our life was, it sort of made sense that my job is to go out and kill the animal, bring it home. And we have a more traditional division of gender roles than we would have if we didn't have these responsibilities. Women bear the entire brunt of caregiving,

And there's so many invisible ways that the costs of that are imposed on women. I mean, because I used to, I did have a lot of responsibilities taking care of Vince and when he was with us, like I would come home and give him a shower and stuff. And I remember I would be invited to work dinners with important scholars at other universities and people would say, you know, let's have this dinner at 730 at night in the West Loop at this really cool place. And I'd say, I can't go to that. I got to go home and help my wife and help Vincent with his stuff. And so I would miss the opportunity to network.

you know, with this person. Now I was already tenured at that point. I was a senior scholar, pretty much. There are all these young women who have young children at home who are assistant professors who are trying to make their way in the academic professions who had exactly the same issues and worse forever that where they would just miss, quietly miss an important career opportunity for something like that. I just never paid attention to until it started happening to me a lot.

So tell me, so you're now aware that you will need to really be careful with your money in a way that you wouldn't have been probably before. So what did you do? What does that mean? I started researching how to do retirement stuff and how you should invest your money. And what was striking was the actual what you need to do is so much simpler. As Slate Money listeners already know, the idea that you do passive index funds and stuff like that, and you actually save your money, you actually try to be frugal and save your money, that was

There's a whole bunch of stuff that once I started to look into it, I realized, hey, this is pretty simple, but I never bothered to do it. And so I was friendly with a lot of journalists. And I remember Helene Owen was on, I was on the reality-based community blog and I interviewed her for the blog and I was talking about some of these issues. And I said, isn't the fundamental problem that the financial advice industry has, isn't their fundamental problem that the best advice is available for free at the library and it would fit on an index card?

And then I started getting emails from people saying, okay, where's the index card? I was just woofing at that moment, but I had planted a flag in the ground. So I grabbed one of my daughter's index cards. She was in seventh grade at the time. And I just scribbled in less than two minutes, just a bunch of obvious things like pay off your credit card in full, invest in passive index fund. Don't try to buy individual stocks because the people you're competing with are better at that than you are.

And I took a picture with my iPhone and I just posted it on the web and it got something like 400,000 hits. And I remember I won Money Magazine's Best New Idea of the Year, one of the best new ideas of the year award. And so my colleagues at the business school said, oh, I heard you won this award. What did you do? And I showed them the card and they were like, you're kidding. So good. Yeah.

Like I've been spending 25 years like publishing in major academic journals, you know, important things about the stock market. And you just scribbled in two minutes, completely obvious things. And I think that sort of speaks to the importance of what I did, although it was accidental. But it was very bad handwriting and stuff like that, which I think made it more approachable in a human way. The idea that, you know, here's this thing you can stick on your refrigerator that will just remind you of some important things you need to be doing. I want to talk about that.

more in a little bit, but I wanted to ask you a bit more about Vincent and your mother-in-law. She did not warn you or Veronica that you would

be the ones taking care of Vincent. That's my understanding. Is that right? It was one of those issues you never talked about. We all knew at some point this issue would happen. And we really talked to her about moving out to Chicago. And I had sort of a plan that I never really talked about with her about where we'd get her to move out to Chicago and then we'd figure out how to make a decent transition plan. But it was just a really sensitive subject. There were a lot of conversations with her that we never had. And then she, unfortunately, she died suddenly quite tragically. She

She died at about the age that I am now. And I think we all kind of expected that we would have a longer glide path to kind of do this in a graceful way. And so we put off the icky conversations and then this happened. I mean, at some level, we knew we were going to be responsible for him, but we never really talked about it. So children with intellectual disabilities now, they live a lot.

longer life expectancy has really gone up. Like people with Down syndrome now, I guess, live to around 60 years old. Longer. Yeah. And that's good. But parents are the ones often looking after them and then they're getting old too. It just seems like, is this an increasing problem? People with intellectual disabilities now live a normal lifespan and the majority of people. It depends a lot on what the diagnosis is.

about a million people with intellectual disabilities live with a caregiver who is over the age of 60. And that number is growing. And the good thing about that is growing because people with intellectual disabilities are thriving in a way they did not before. But as a society, as we talked about, we have to plan accordingly. And particularly, you mentioned Down syndrome. One of the real challenges in Down syndrome that my team and I are studying now is there's a very high rate of dementia that happens at earlier ages.

So the rate of dementia among people with Down syndrome who are in their late 40s is about what the rate of dementia is in the rest of the population over age 70.

So you could have a parent who has dementia and the adult child has dementia too. A hundred percent. And of course, if you have Down syndrome and you start experiencing dementia, you have less cognitive reserve. And so there's a lot of older parents who are taking care of their son or their daughter who is experiencing declining cognitive function. And of course, there's also other kinds of physical problems. Vince,

Vincent was hospitalized several times in the year that he moved into our house. And so Medicare, Medicaid, Social Security, those things, they have our back. And one of the big things we all have to do is to make sure that those programs are very well set up to support families. We put on our index card, support social insurance. And a lot of people said, I'd loved all the advice on the card, but then you got all political with the social insurance.

And one of the points that I want to make is that's what saved my ass. Pardon my clinical language, but he had very high medical bills that were covered by Medicare and Medicaid that would have bankrupted us if we had to pay them.

And the cash payment that he got from Social Security was really important to our family. And especially as a privileged person, one of my responsibilities is to own up to that reality. This is what allowed me to be successful economically. And I have to support everyone in my community that faces those challenges. I think we have to take a break here. But when we come back, I want to talk to you about the social safety net and something you call the stupidest thing in American social policy.

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This is where I'll tell listeners, when I was growing up, my mother had multiple sclerosis and it was particularly bad. And my father, you know, had to work. He was also a tenured professor. And, you know, his career was kind of stymied, I think, by having to care for her. He was in Chicago, like in a tenure track job.

But then we wound up moving back to New York so my mother could be close to her family. He wound up taking a job that I don't think he ever thought was of the caliber he could have had. And he still had to work. And she was home and she needed full-time care. So we eventually...

He was like, "Okay, we have to put her in a nursing home." And it's so unaffordable, like you said. So it's hard to figure out even, and we could talk about it, how you even go about figuring out the system. I think he had, I was young, so I think he had a lawyer helping him, relatives, doctors. And then the recommendation was she should go on Medicaid and Medicaid will pay for this. But at the time, the only way she would qualify for Medicaid is if we had no money.

As a family, they owned a house together. We had savings, all of this. And the recommendation was divorce. You got to divorce her. Then she can be, you know, poor and then Medicaid will cover it. So that's what happened. And I always just had a chip on my shoulder about that because it's so awful to make couples already going through something so difficult.

heinous to then force them into this arrangement just to get the aid. Obamacare actually changed that policy and it's no longer, they fixed it. So that's good. But yeah, it made me think like Medicaid seems great and Medicare seems great, but these programs have so many obstacles they put in people's way and...

so much sort of like red tape around it. And one thing, when Felix was telling me you wanted to come on Slate Money, he said, he wants to talk about, he's like, these limits for saving money. And I don't, you know, and this is what really made me want to talk because it sounded like one of these other kind of like things that are just, they just make people's lives harder at a time when they need the most help. Tell us about the stupidest thing in American social policy.

So if you had to give a trophy for the stupidest thing in American social policy, it would be a very competitive field. But the $2,000 asset limit for people with disabilities who are on SSI, which SSI is Supplemental Security Income, is the assistance program for low-income people with disabilities. That's the route through which people get onto Medicaid when they have disabilities generally.

So you can't have more than $2,000 in financial assets. Now, the value of your home is excluded. Your car is excluded. Your wedding ring is excluded. But basically, everything else, there's a $2,000 limit. That limit was last raised in 1989.

And if it was what it was set at in the mid-70s, it would now be something like $11,348. So you can't qualify for public benefits if you have a lot of money. They want you to spend the money on care, right? Is that sort of the principle behind it? We're going to keep middle-class people away from these programs. They're not intended to be middle-class entitlements, is the way it's described. Okay. And there's a number of problems with this that underscore its fundamental stupidity.

One problem is, so I use a wheelchair and I live in my house and I can't have more than $2,000 in financial assets. The value of my car is excluded from that $2,000. What do I do if my car needs repair? Yeah. My house, what do I do if my boiler breaks or something like that? Effectively, you can't live independently with that $2,000 limit.

The other thing is that there are ways around that limit and all the ways around that limit. Most of the people who use those paths are young adults with intellectual disabilities who are connected to a high education income family where they have access to information and help to do that. When you create a really complex system, one of the things I like to say is that complexity creates disparity. When you have a really complex system, people with access to information and resources can figure out how to navigate it.

By the way, this is a complete blame the game, not the player issue. I know families like mine that are able to do that. You know, that's what we do because we love our loved ones. And that's what we should do because our loved ones deserve that. But we all witness people around us who are not able to do that. Many, many other people are really at sea trying to figure out how do I navigate this $2,000 limit and, you know,

make sure that I or my loved one has what they need, but we don't threaten their eligibility for benefits. And it also encourages people to do crazy stuff that has unintended consequences. Like what? Well, so suppose that I have two children, Harold and Emily, and Harold lives with

Down syndrome and Emily is not disabled and Harold is on SSI and I'm now 78 years old and I have a $350,000 house and I'm thinking about how I can meet Harold's needs. So what I do is I say to Emily, you know, Emily, I'm going to leave you my house.

Harold can't have it because he can't have a paper trail that he's got any assets. And then Emily gets divorced. And all of a sudden, her soon-to-be ex-husband is fighting with her about the value of this house, half of which is supposed to be for Harold, but there's no paper trail of any of that.

Or Emily decides to power trip and control Harold's life because she now has control over a lot of the financial assets that he needs. And so we create situations where you can't do the legitimate thing in a straightforward way. And so people find goofy strategies that bring unintended consequences.

And one of the things that we're doing now, we have something called ABLE accounts, which are Achieving a Better Life Experience accounts. And those things you can put basically up to about $18,000 a year into them. It's like a 529 college account. Anything that promotes independence and self-sufficiency is a legitimate use of the ABLE account money. And it doesn't count towards that $2,000 limit. So in some ways, it makes that $2,000 limit meaningless for people with those accounts.

And so we looked at who has those accounts. In Illinois, the big pockets of those accounts are in places where affluent families are. And a very, very high percentage of all the people with ABLE accounts are young adults with intellectual disabilities from high education income families that I was talking about. And we're trying to help other families get these ABLE accounts because Illinois and other states have done, they've created this great program, but people don't know it exists. And it's very intimidating.

These things fit the grooves of upper middle class life more than they fit the lives of a lot of people with disabilities.

All this really reminds me of Annie Lowry, who's an economics reporter now at The Atlantic, something she's written about just how policymakers and governments make it so burdensome to apply for benefits for food stamps or any other kind of like welfare benefits. People just don't do it. They just give up unemployment benefits too. And I imagine that goes on here as well. And you're making me think of it

across one other vector, not only did fewer people sign up for these benefits you're talking about, the people who need them most are the ones that aren't signing up for them because they've been made so complex. It seems like that's purposeful, that these programs are purpose-built to be complicated and hard to understand, and that benefits

higher income people hadn't really thought about it before. You're raising a great point. The administrative burdens and Don Moynihan and Pam Hurd, their work is just fundamental in this area. How the administrative burdens create unintended disparities mean that a lot of people who need benefits the most don't get them.

Sometimes that is done deliberately as a way to constrain programs. I think in the case of disability, it is genuinely much more benign neglect than malign neglect, as it is in some other areas. But there's no question that when you create complex systems like this, that you're going to create exactly the pattern that you talked about. And I do think that in the case of disability, the political system is most responsive to the most organized constituents with political resources and who have the most public sympathy.

The community of people that is affected by intellectual disabilities is probably the most politically influential constituency in all of disability policy. I do addiction research and the contrast in the way families are treated, caring for a loved one with an intellectual disability versus the way families are treated when they have a loved one who has a serious mental illness or an addiction disorder is so great.

And I think it's one of our responsibilities in the IDD community is not to try to leverage our greater public sympathy to get things that other people who have equal need don't have the public support to get. I'll mention there's one...

There's an amazing academic article by Stan Hope and Wong where they just took the city of Philadelphia and they plotted where all the residential facilities were for people with intellectual disabilities and for people with psychiatric and addiction disorders. And they made little dots all over the city. And the size of the dot was how many people lived in the place. And then you can sort of see which neighborhoods had the dots.

And for intellectual disability, there were tiny dots over the entire city. You could never distinguish one neighborhood from another by how many dots there were. There's group homes for people with Down syndrome in every neighborhood of the United States. And then they had the behavioral health, the psychiatric and addiction disorders, and the big dots. And they're in the more economically marginalized communities. And these places had been nimbed out of a lot of the communities where there were a lot of group homes for people with Down syndrome, things like that.

And I think we have to be self-aware as an IDD community and as a society that every human is valuable and needs to be respected. And every family is dealing with a lot of stuff. One thing we never had to deal with with Vincent was other families judging us. People are just amazingly nice.

We have to be aware of that. And when I think about the important work, like we were talking about administrative burden, those burdens are often imposed on the people that face the most social stigma. And there's no political counterweight to that. Whereas when you have a lot of public support, it's a lot easier to go to your congressperson and say,

hey, you know, this program has to be fixed so that it's responsive to families. They're afraid of the moms who are going to bring in their cute young toddler with Down syndrome or who's in a wheelchair. They're not afraid of the families of people with serious mental illness or addiction disorders in the same way. And so just to close the loop, so you said Vincent is living in a home now and you didn't go broke taking care of him? We definitely did not go broke. Medicare, Medicaid,

SSI, SSDI, they completely saved us. I'm so grateful for that. When I look ahead and I think about political fights we might have that involve Medicaid cuts, things like that, first of all, it's not always about other people. There's people we love who may need those things. But we really do have a responsibility to help each other in this life. And these programs are the way that we do it. And so I think it's really important that we stand up for

social insurance and for making sure that public assistance is not some begrudging thing that we give to people and not treat them as equal humans to us. And so when I look at some of the proposals to cut Medicaid that are on the table now, I just think those are just so inexcusable, particularly when people like myself have thrived because the stock market has gone up. And one of the ironies, when you have a lot of family responsibility, you plan for the long run.

So I had a very stock-heavy portfolio that did well. And that creates a responsibility for me. I live in the Southland of Chicago. Most of Vincent's peers are people of color who have much less family resources. And they're just as great humans as Vincent and our family is. And we've got to look out for everybody. I love that one of the things on the index card was support social safety net programs. I'd be remiss if I didn't ask you, did Veronica ultimately go back to work?

She did, but it was never the same. She gave of herself in a way that so many other women have.

It's a very profound thing. And she went back to work. She became a social worker and she was working as a care coordinator at Lurie Children's Hospital in Chicago. And she's helped a lot of humans, but she paid it very, very dearly for taking care of her brother. And she's still now, I mean, he lives in a group home, but she's always taking him to medical appointments and keeping track of, she's busy. And it's, yeah,

I'm speechless to say more about that. A lot of people listening probably don't have a disabled child to look after, but they may be caring for their older parents or just like thinking about the day when they will become someone who needs caring. Are there things you've learned caring for Vincent studying all of this that can be done about that financial planning that maybe people aren't thinking about that?

is something I'm asking about myself. Is there something I need to be doing along those lines so that my children aren't, you know, one day burdened and worried about how they're spending too much taking care of me or, you know, all of that. I mean, the first thing is start early. You need rockets to do rocket science. Whatever the rocket science suggestion that I'm going to give, you're in so much better shape. So anybody who's listening who has, say, a child who's disabled, start early.

They don't have to be on SSI for you to have an ABLE account if they have a qualifying disability. The miracle of compound interest is so important.

There's a whole bunch of stuff that's boring until it's not. I think getting expert help early is valuable. For example, people have special needs trusts for themselves or for their children. The financial advice industry actually has really good advice when you come and you say, I don't want you to pick the next apple. I want you to tell me how I should plan for my kids. That's often very, very valuable. And I was a little too cynical in a lot of the stuff that I've said about people who are fiduciary advisors because they're

That is so valuable. And very often they can bring a critical perspective to,

to your family stuff that is hard for you to bring up yourself. Talking very early to someone who has a little bit of critical distance who can help you plan is important. And of course, living frugally is, is important too. I live in a very cheap house. What's funny is everybody kind of Zillow's everybody else's house in the social world that we live in. And so I live in a $350,000 house, which for university of Chicago faculty is a pretty small house. And I had people saying, is there something you're not telling me? Cause I,

You know, you live in such a cheap house. And I'm like, you know, the computer on your desk is so cheap. I feel is there something wrong in your life? You know, that you only have this, you know, I think having candid conversations with your family about these things before it's operative is very important.

And everything about your own psyche and your family relationships shows through in the way you manage all these money things. And so you want to be self-aware about that and not put off that icky conversation. I'm 61. I'm talking to my daughters about, you know, if I ever can't take care of myself, let's let's let's game that out. And it's hard, but it's important.

So a lot of these index card rules hold up, pay your credit cards in full if you can, save early. But you said your mind's changed about a few things. You've had some criticism about a few other things. So do you want to talk about that? Yeah, I mean,

Most of what we said is basically sensible and it's 80% right. I wish I had talked more when I wrote that card about Roth IRAs and a few instruments that are just so valuable for people. And I was very enamored of small cap stocks, which there was a literature at one point that showed that small cap stocks had done well, but it was actually no, that was just a mistake on my part.

There's some simplifications that we made that some of the experts criticized. We sort of laid out in the book that Helene and I wrote some rules of thumb, like you should refinance your mortgage when you can get like a one percentage point benefit in the interest rate. Yeah, people have told me that. And I think we looked into it.

When interest rates fell. And then when we do the math, it was like we were going to be spending so much money in fees. Even the one point didn't really... It didn't math. The people who sort of fully do the optimal math analysis...

You know, it depends a lot on how volatile interest rates are, how many more years are on the mortgage and all this kind of stuff. I think we were pretty close to right on a lot of that stuff. And many of the challenges that we thought about pointed to big social policy errors. I think the American dream of home ownership is one of the most toxic things in American economic and social life. The idea that your home should be the cornerstone of your wealth generation. First of all, it's the most leveraged and undiversified asset that you're ever going to have.

One of the things that saved me with Vincent was when I moved to Chicago, I got one of these mortgage calculators and it said I could afford a $462,000 house. University of Chicago gave me the down payment on my house. Wait, what? That's amazing. Wow.

We need to pause and acknowledge how lucky and amazing that is. Okay. Yeah, I was very blessed by that. But I had no other money. That was literally 100% of all my money. And I remember I talked to this banker and I was talking kind of at this pace and I had just gotten tenure. And I was like, don't you know who I am phase of academic life? And at some point I stopped talking and he said, Dr. Pollack, I have to tell you something. And I said, oh, what's that? And he said, you're not a good customer. You're 40 years old. You've saved no money except for this down payment.

which is not yours. And if you leave the University of Chicago, they ask for it back because, you know, there were strings attached to that. And dude, you're, I'm not going to give you a mortgage for a $462,000 house. That's just ridiculous. And remember, I was very curt with this guy. I was really, it's like, he's treating the great professor, you know, in this way. Doesn't he know who I am? And that was four months before, you know, we had this financial crisis with Vincent because we bought a much less expensive house.

with a much lower mortgage. And that absolutely saved me because we didn't have this huge overhang of a really expensive house. Because, you know, we can change a lot of things in our life because our money was tight. You can't change your mortgage. We send all of these cues to our kids that you're not adulting unless you have an expensive house. That's bling for upper middle class people, basically. And it also makes us more selfish because once I own a house, you know, for instance, we know that property values are very racialized.

So once I own my house, I have an economic incentive to keep low-income people out of my neighborhood and to keep people of color out of my neighborhood because that affects my property values. So all the NIMBY stuff, a lot of that is coming from a very real place. It's almost like my nest egg is my house. If we take a more inclusive approach to my neighborhood, my property values are going to go down. So I'm going to stop that. That's a really smart take, but it's the most toxic part of the American dream, this idea that homeownership is the pinnacle.

Harold, thank you so much for coming on. Thank you so much for having me and for listening to me babble. I'll pay the receptionist on the way out. And that's our show for this week. Thanks to Jessamyn Molley and Shana Roth for producing. Ben Richman is Senior Director of Podcast Operations. I'll be back in your feed on Saturday along with Felix and Elizabeth for a regular episode of Slate Money. And until then, thanks for listening.

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