| Better Life Lab’s Brigid Schulte on Policy and Economy Disconnects

| Mark Swartz

| Published by New America’s Better Life Lab, The Care Disconnect: Americans Misjudge Care Realities, But Know Families Need Help reveals current understandings and beliefs about childcare and home care for older adults. Partnering with YouGov on the survey of 1,000 U.S. adults 18 years and older, Brigid Schulte and Elliot Haspel found that Americans generally want government and business to play a role in making care more affordable. Schulte was taking care of her own mother when I talked to her about the report.

You’re on a care journey right now. How’s it going?

I’m out here now with my mom, who just had a stroke, and I’m the night nurse and the afternoon nurse. And I work early in the mornings, but if you just consider eight hours a night, I’ll be here for five weeks, 45 bucks an hour, which is sort of average around the country. I’m literally saving my family $12,000.

It sounds exhausting though. How did this survey come about?

We did the survey for two reasons. One is that we were hearing anecdotally, over and over again, how surprised people were by how the system didn’t work until they had to be part of it. And then also I really wanted to show how in the policy world, everything is so siloed. You’ve got childcare over here, you’ve got older age care over here and you’ve got disability care somewhere else. And that’s not how families experience life. A lot of people are sandwich caregivers, or they will be. You don’t have just one care need. Sometimes you move from one to the other; sometimes you’ll have them all at once. And so I think what I wanted in the survey was to give a larger sense of what families experience, which is care throughout life.

How do people perceive the safety net? 

People are so shocked about how things work or don’t work, until they need these systems. And then it’s too late, because you’re scrambling. How many people end up having to impoverish themselves or their parents in order to be able to qualify for Medicaid, so that they can get the care they need, so they can stay in their homes and not have to go to a much more expensive care facility or nursing home?

What are the obstacles to keeping aging parents in their home?

With home care, people were again shocked. It’s like, wait a minute, Medicare doesn’t cover home care? ‘Wait, what? Wait, how much does it cost?’ And we really found out the hard way when my dad had a stroke back in 2014. And then all of a sudden we had to figure out 24-hour care, going from zero to a hundred in two weeks and trying to put together a care team. We were like, ‘Oh my God, how are we going to afford this? And what kind of options does he have?’ And he served in the Navy in World War II, but he didn’t qualify for any veterans benefits. They had a house; they had too many assets; they didn’t qualify for Medicaid. So it was all coming out of pocket. 

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And you and your sisters have a lot of privilege and ability and some resources that a lot of other families don’t have.

My dad worked in universities. It’s not like he was a wealthy man. But yes, they did have resources that enabled him to be able to stay home with 24-hour care for five years, but that was like a half a million dollars. How many families can really do that? He made a very smart decision. Again, I don’t know if this is smart or not. I don’t know enough about elder care financing, but he decided to put retirement savings into an annuity and made a bet that he didn’t want to outlive his money, so to speak.

What struck you most about the survey results?

For so long in this country, we’ve had this narrative that care, any kind of care in your life, it’s a private family responsibility. Families experience it. So if you have a need, you got to figure it out. You got to pay for it. It’s your deal. 

Why did you ask survey respondents about “home care” instead of “elder care” or “aging in place”?

We called it home care because that’s how families experience it. Policymakers know what aging in place means, but for families, they think more, ‘How do I keep mom or dad at home?’ So that’s why we chose those words to make them more understandable, relatable to average readers.

Is this area a growing concern for New America, and what do you see going forward?

Yes, absolutely. You can’t look at demographics and the demographic changes in the United States without recognizing that it is a huge policy area that is untapped. It’s new territory, and families are going to be struggling with that, and we need to be thinking about that and how to respond to it right now. Families are struggling. Home care workers, if you look at Bureau of Labor Statistics data, that’s predicted to be the fastest growing occupation in the economy in the next few years. And it is one of the poorest paid. This raises huge questions for our economy, for our workforce, for what we allow employers to pay. ‘Well, why is it okay to have the largest profession in the economy be one of the lowest paid?’ These are big questions that we need to answer. So yes, it’s long been a part of the Better Life Lab’s mission and we’re digging into it more and I would say the same for New America. 

Mark Swartz is publisher of Aging in America News. He lives in Baltimore.