EPISODE 323

Michigan is a fascinating place — a swing state with a large senior population. In fact, 1 in 5 Michicanders is over 65. Our guest this week, Paula Cunningham, is on the forefront of seniors’ advocacy in the Great Lakes State. As director of AARP Michigan, she has a lot to say about the stresses of family caregivers, the value of home and community based care, and the future of Social Security — among many other things! Don’t miss this chat with a woman on a mission to improve the lives of older people in her state — and the family members who care for them. 

TRANSCRIPT:

ANNOUNCER: It’s You Earned This, the Social Security and Medicare podcast, brought to you by the National Committee to Preserve Social Security and Medicare. And now, your host, Walter Gottlieb. 

WALTER: Michigan is a fascinating state. It’s a political swing state, where elections can be decided by a margin. It’s an interesting mix of rural and urban, and Michigan has a huge population of seniors. More than 20% of residents are over 65. Our guest today is on the forefront of seniors’ advocacy in the Great Lakes State, as it’s known.

She is Paula Cunningham, state director of AARP Michigan. A dynamic and warm personality, as you will see, and she and I will talk about the state of caregiving in Michigan and the nation, about home and community-based care for our seniors, and the future of Social Security, including how to engage younger adults to rally behind this program. Paula Cunningham joins us from Lansing, Michigan. Good afternoon, Paula.

PAULA: Hi, how are you today, Walter?

WALTER: I’m doing great. Now, the viewers can’t see you, but I can, and I see that you have the state of Maryland colors on your sweater, black, yellow, and red, even though you’re in Michigan.

PAULA: Yes, but you know what? I have a soft spot for Maryland. I don’t know if you’re aware of this, but I have a daughter who lives in Lanham, Maryland, and I have a granddaughter who’s in Maryland, so I’m a big fan of Maryland as well, big supporter of Maryland. So, yeah, we can have more than one state loyalty.

WALTER: That’s right, and it’s my home state, and I’m so glad that your daughter and granddaughter chose to live in Maryland.

PAULA: Yes.

WALTER: And I hope you get to see them often.

PAULA: I do. I visit frequently. As a matter of fact, she’s eight months old, and I’ve seen her every month. Does that tell you anything?

WALTER: Oh, it tells me you’re a wonderful grandmother, for starters. 

Well, I want to start the conversation by saying that I don’t know if everyone out there understands that AARP doesn’t just have a national office, but it has state offices, and you’re the head of the Michigan State Office for AARP, and I was just wondering if you could tell folks what it is that you all do in the Michigan State Office of AARP. Well, thank you for that.

PAULA: Well, thank you for that. Yes, AARP has offices in every single state, as well as Puerto Rico, District of Columbia, and the Virgin Islands, so there are 53 different offices throughout the country, and we’ve been doing a little bit more work worldwide as well in terms of brain health.

But in the state of Michigan, which is my stomping ground, we advocate on behalf of older adults, those are 50 years and older, and their communities and their families, everything from caregiving to not becoming victims of fraud, to maintaining, securing, preserving Social Security, to age-friendly communities, anything that impacts the life of an older adult, you can consider AARP to be a wise friend and a fierce defender of those issues.

WALTER: And in the state of Michigan, you not only have a large senior population, you have 1.6 million family caregivers. Those are the folks taking care of family members and usually taking time off work to do that. Would you say that we’re in a sort of caregiving crisis in this nation right now?

PAULA: Yes, excellent question, and I wish more and more people would stop and think about older adults. Michigan is one of the fastest aging states in the nation. We are fourth, I think, the fourth fastest aging state in the nation. And so whatever you’re hearing, listening to this podcast, ask yourself, what does that mean if you have older adults in your state and they’re increasing? Because we all know that there’ll be more people over the age of 65 than under the age of 18 in just five years or so. What does that mean for transportation? What does it mean for housing? What does it mean for the economy? What does it mean for the workforce? 

And so, anything that impacts those older adults, AARP is a strong advocate to make certain that they live their life with dignity and respect. And people in states need to pay attention. The older adults will continue to contribute to the economy, even when the economy goes south, because they still get their Social Security dollars. Thank goodness. They still have their source of income. They still need health care. They still buy cars.

They still go to dinner. They still go to the movies or entertainment. So you want older adults in your community. You want to do everything possible to make certain they stay there.

WALTER: And caregiving comes with some expenses. According to your statistics, more than three out of every four family caregivers incur out-of-pocket expenses for caregiving. And then, of course, 53% of them have to balance full or part-time employment with caregiving, or perhaps give up work altogether for a while. 46% of caregivers report financial setbacks. And here’s an eye-opener. One in three caregivers experience high emotional stress. It sounds like caregiving comes at quite a cost.

PAULA : Yeah, it’s a topic that’s near and dear to my heart because these family caregivers, these 1.6, actually it’s almost 1.7 million family caregivers, unpaid family caregivers here in the state of Michigan, they’re doing the state a favor. In addition to taking care of their loved ones and doing it out of the goodness of their heart and because they care about that person, because for every dollar that the state spends to send someone to a long-term care facility, they can save $2 if they allow them to have more home and community-based services.

The state could actually save money by allowing people to age in place in their own home. And when we do research and surveys, Walter, 90% of everyone we talk to would prefer to age in place in their own home, a familiar territory for them, a place that they’re used to, a place where they can get a hug from their grandkids or look out their own window and see their own backyard. They want to age in place.

And for an employer, if you have a caregiver that’s taking care of someone and they’re employed, you’re losing about $7,000 a year just in terms of non-public activity. They have to take them to their nursing home, they have to take them to the doctor’s appointment, they have to take them places. So this benefits everyone. The more services you can have for people to stay in their own home, age in place, it helps everyone. And we want, in Michigan, we want older adults to stay in Michigan and not go somewhere else.

Because, first of all, we value them, we value their wisdom, we value their expertise, we value the life that they’ve led, and we want them to feel respected and to have a place that they can call home. And that’s here in Michigan, and we’re doing everything we can to make certain they have choices as they age.

WALTER: And I do want to talk about Medicaid, home-based and community services in a little bit, and also the impact of Trump’s Big, Ugly bill on those services. But first, AARP Michigan supported legislation in the Michigan state legislature. It was a bill called HB 5214 by Representative Kathy Schmaltz. What would that bill do for family caregivers?

PAULA: Well, we know for a fact that family caregivers spend money out of pocket. Whether it’s to build a ramp, whether it’s to put some grab bars into the bathroom, or whether it’s to widen doors or wheelchairs, they spend money out of pocket. We’re saying to the state of Michigan, to our elected officials, let’s give folks of certain income levels, let’s give them a little bit of tax credit for the out-of-pocket expenses that they have.

Currently, this legislation was calling for a $2,000 tax credit, so that if you have like four, three, four thousand dollars of receipts that you can turn in, you can get up to two thousand dollars of that money back. Again, taking care of a loved one at home saves the state money. This is not new money. We’re not asking for a new allocation.

Let’s recognize the fact that a family member is taking care of their loved one in their own pocket to take care of some of the expenses, transportation, again, some of the retrofitting of doorways or whatever it might be. There’s no tax credit, no break for them whatsoever. And we were able to give businesses all sorts of breaks during COVID, and I support that. So what about family caregivers who are saving the state money? Can we give them a little bit of a tax break in order to keep their loved one at home and to help reimburse them for some of those expenses?

WALTER: And do you know whether Michigan is leading the charge in this way? Are other states experimenting with similar legislation?

PAULA: Absolutely. It’s one of the things that I love about AARP is that we identify issues all over the country that are important to older adults, and you’d be amazed at how much similarity there is. Whether you are in Tennessee, or whether you are in Maine, or whether you’re in Maryland, the issues remain pretty consistent with older adults. And so other states, yes, they are also looking at some kind of credit for caring. Our national office, from a federal standpoint, is looking at giving some credit for caring as well.

So, it is an issue that is not just resonating in Michigan, but it’s resonating throughout the country. Again, because caregivers go into their own pockets to help take care of their loved ones, and you know, whether there’s an income cap on who gets the reimbursement or not, we’ll see. But at least let’s try to do something for those who are trying to save their state money in Michigan, but even more importantly, taking care of their loved ones at home, which is where they want to be, which is where I’d certainly want to be.

WALTER: Absolutely, and I want to dive into the home-based care versus nursing home in just a minute or two. Staying on the national level for a minute.

Caregivers can suffer later, like upon retirement, if they’ve taken time out of the workforce. That means that their Social Security earnings history is not as robust as it would have been if they were working those years. So, we at the National Committee have supported a caregiver credit in Social Security so that you’re credited something for those years that you took off from work to care for a loved one. What’s your position on that?

PAULA: Well, you know, anything that we can do to help caregivers, to support caregivers, we’re certainly supportive of that. We think that they are unsung heroes. They go about their lives and not complain. And yet they are doing heaven’s work, quite frankly, in terms of taking care of their loved one. I’ll never forget when we did a meet and greet when I first started at AARP. One of the women stood up.

She had been to two tours of duty, and she said the hardest work she’s ever done was taking care of someone with no help, taking care of her mother when she came home and there was zero help for her. We forget about that because, again, they do what they do out of a sense of love and commitment to their family member. But we need to give them some support. Like you said, here in Michigan, 1.7 million unpaid family caregivers, and they are saving the state money. They are taking care of those who have taken care of us in prior years in terms of work.

So Social Security, giving them some kind of a credit, when they have to step out of the workplace and they’re missing out on their Social Security, anything that we can do to help caregivers, I think we’d be supportive of.

WALTER: And I know that my family, our family members have had to take time out to help both my in-laws and my elderly parents. We haven’t had to stop working, but try to fit it in around everything else we’re doing so I can only imagine the strain on people who are doing that 24-7. What about you? Have you had some personal experience with family caregiving, Paula?

PAULA: I have. My mother and my father, both of whom are now deceased, but lived in Ohio. My father was very ill. I would go down every week, every weekend, and then once he passed, I went down at least every other weekend to try to help take care of my mom, who stayed in their own home until their death. And so it was a labor of love. I never regretted it, never thought about not wanting to do it. You want to be able to take care of them, but every now and then… 

I was in a very fortunate state. I didn’t need the extra help at the time because thank heaven that we just didn’t need it. But, I’ve watched so many people who are just struggling. They’re just not struggling with the person they’re taking care of, but they’re struggling to make ends meet in terms of the finances that are involved with that. I remember we did some caregiving storytelling, and I’ll never forget the one woman who said that she sold her wedding ring once her husband died just to help pay for her prescription drugs.

And they had been married for over 50-some years, and she had to sell her wedding ring. When people are making decisions whether they buy prescription drugs or whether they pay their rent or buy groceries or cut their medication in half, you shouldn’t have to do that in the United States of America.

WALTER: No, you should not. One of the wealthiest countries in the world. Let’s go back to that statistic that I referenced earlier. One in three caregivers experience high emotional stress during caregiving. I don’t mean to ask a naive question, but why is that, and what kind of emotional stresses are they feeling? How is that manifesting itself?

PAULA: What we see so many times play out is that you forget about your own health and well-being while you’re taking care of someone else. They become the priority, right? Your central focal point is making sure that person has what they need. So if you don’t sleep at night because you’re getting up to try to help them, then you’re not getting the sleep you need.

If you are making decisions about what to purchase, you’re going to make sure that they have what they need before you maybe take a vacation, or before you take any time off, or do whatever you need to do for your own mental health and well-being. The stress level is high. First of all, that’s your loved one. That’s someone that you care about. You’re going through that emotional turmoil. Then in addition, you’re there day, night, afternoon, morning, trying to make sure that they’re taken care of. And I’ve seen it, you’ve seen it too, Walter, where caregivers end up getting sick before the people they’re taking care of are deceased. 

So how about you, Walter, have you been taking care of someone or have you gone through that?

WALTER: Yes, I had to be a caregiver, again, not full-time, but I had to be a caregiver to my dad before he passed away and also help manage his affairs. And then my mother, God bless, is 91 and she’s in a good, solid assisted living facility, but that doesn’t mean that she doesn’t need help from the family, or that there haven’t been crises where we’ve had to step in and give time and energy toward that.

But I did want to note that, and I’m not really talking about my family in particular, but another stressor can be that the person you’re caring for may or may not be mentally competent, but they may not know what their level of decision-making acuity is at this point. And you may disagree with them, but they still may have control. Is that not also another stressor that they may not want to do what you think is best or vice versa?

PAULA: Well, you know, that’s true whether they have any kind of mental deficiencies…

WALTER: *laughs*

PAULA: You know, older adults have a mind of their own. We’ve all learned that, right? Many of them are set in their ways. But absolutely, that is another type of stressor. AARP has some material like Preparative Care. That’s the name of the brochure. You can find it online, but it’s Preparative Care. And it tells you things that you need to talk about before you get into that kind of a situation. Like, do you have durable power of attorney? Who’s going to make decisions? What’s the medication? If something were to happen, who knows what medication your loved one is taking and where those medications are? Who knows about their bills and getting to the bank account to pay those bills? 

So, you know, this is a whole checklist. And I always advise people to look at that checklist while you’re healthy, while there is not an issue, and then kind of go through all the things that you need to know in case something or when something happens.

Because Rosalind Carter said that either you’re going to be a caregiver, you know a caregiver, or you’re going to need a caregiver. So it’s going to impact all of us one way, one day.

WALTER: Absolutely. And we have a wonderful episode with an author who wrote a book about financial caregiving. It’s all dedicated to the financial and practical end of things. And you can find that episode at youearnedthis.org. 

So, Paula, I said we were going to get to the whole home and community-based services issue. Medicaid pays for the lion’s share of long-term care in America. A lot of people think it’s Medicare, but it isn’t. It’s Medicaid if you’re income eligible and meet the other criteria.

Like you said, people prefer to be at home as they age or to age in place, which is the term of art right now, I think. And yet, there are millions of seniors still in nursing homes and institutions. But outcomes appear to be better if you can stay at home and get the care you need. Every state is different in how much they put toward home and community-based care versus nursing home care. How does Michigan stack up there? 

PAULA: We suck. We suck.

WALTER: Okay. Don’t sugarcoat it, Paula!

PAULA: We absolutely do. We are like 34th in the nation in terms of the allocation of dollars that go to long-term assisted living versus home and community-based services. We advocate for that on a regular basis. I’m not afraid to say that the nursing home lobbying efforts here are extensive, and it’s challenging to go up against the nursing home industry, although we will continue to do that. It’s not even new dollars, but just rebalancing that allocation. But every single time we do it, it is a fight. And we can’t get anyone to take a look at all of that.

So you can see I feel quite passionate about that.

WALTER: Yeah, and we like that passion. That’s no problem. That’s fine. What isn’t helping is the Trump administration in the following ways. First of all, the Trump administration has attempted to loosen some new nursing home requirements, rules that the Biden administration put into place, including requiring actual registered nurses to be on the premises, which we supported. But, the Trump administration is trying to reverse that, or they may already have.

Even worse, though, what they called the Big, Beautiful Bill cut nearly a trillion dollars from Medicaid. And that is going to prevent some states from having a more robust home and community-based services program because those programs are optional under federal law. Did I get that right?

PAULA: Yeah, I believe you did. Yes. States have jurisdiction over how they allocate those dollars for home and community-based services. And let me hasten to say that AARP, I said it before, we’re nonpartisan and we have been nonpartisan, but we fight and advocate for those older adults. And so, again, having options, that’s all we’re saying is we want people to have options as they age, options that will allow them to age with dignity and with respect.

WALTER: We could not agree more with everything you just said. So thank you for that. Going back to Social Security for a minute.

PAULA: Yes.

WALTER: It’s a delicate issue to talk about because, yes, the Social Security trustees predict that the Social Security trust funds will become depleted in the early 2030s. The Congressional Budget Office just came out with its own figures that track with that. Of course, we tell people not to panic. There is legislation in Congress, mostly on the Democratic side, that would protect and strengthen Social Security’s finances for the foreseeable future, but that has not moved anywhere in the current Congress. 

The next Congress and the next Senate almost certainly will have to deal with this. Senators elected in 2028 will be in office almost right up until the time the trust fund is projected to be depleted. I know you’re nonpartisan and don’t take us down these particular things.

Just for the listeners, we advocate adjusting the payroll wage cap so that the wealthy pay their fair share, but there are lots of other solutions, some good, some bad, some we like, some we don’t. Are you hearing a lot of worry from seniors or near seniors in Michigan about the future of Social Security, and what do you tell them?

PAULA: Absolutely. We even did like a man on the street videos last year regarding Social Security, and what would it mean if you had your Social Security cut by 20 percent? What would that mean for folks?

WALTER: And when you say a 20 percent cut, I believe you’re referring to the automatic, roughly 20 percent cut in benefits that would happen in the early 2030s, if we allow the trust fund to become depleted.

PAULA: I don’t have the numbers right on top of my head, but a large percentage of people, I think it’s something like 47 or 37 percent, that is their sole source of income. Their sole source of income here in Michigan. And then something like 57 percent, that is their main source of income. So just think about that. If that’s your sole source or your main source of income, and it’s cut by 20 percent, what does that mean for you? And so we’re telling folks, listen, don’t panic, but just make certain you are aware. It’s an information campaign.

Make certain that you ask any candidate for office, don’t just ask them, do you support Social Security? Because you know they’re going to say yes. But what are you going to do to fix it, to make certain that you get your 100 percent of the dollars that you’ve earned, that you’ve earned, I’ll say it again, that you’ve earned, that you’re going to get those dollars back when you get ready to retire, that they’re going to be there for you. So we want people to be informed that this is an issue, that don’t wait till the 13th hour to fix this.

There are several options out there, as you just mentioned, looking at the cap. But older adults are concerned, “Am I going to be able to continue to get my Social Security?”

People living to 85, 90 years old, they want to know that their income is not going to be drastically reduced as a result of Social Security not being fully funded. And so as many people as will hear this podcast, please share it with someone else. Ask elected officials, what will you do to preserve and protect Social Security?

So if you do nothing, then shame on Congress, shame on all of us. If you do nothing, my understanding is that a trust fund would be, you’d only receive about 80 percent of your Social Security and by 2035, I believe it is. But like you said, Walter, in 2028, the people that we elect in Congress are going to be the ones dealing with this issue. And we just want to make certain that they know that it is a concern for older adults. And young people really don’t think it’s going to be there.

But you know, what we’ve learned here in Michigan is that young people know their aunt or their uncle or their grandma who’s getting Social Security and they’re fighting on their behalf, whether it’s there for them or not. They’re saying, “Well, listen, don’t take this from my mom, my grandmother, my grandfather. They are depending on their Social Security.” So we’re getting young people involved with this conversation as well.

WALTER: So, Paula, I’m so glad you brought it up because that is where I was going to go next. The generational…

PAULA: I read your mind.

WALTER: You read my mind over Zoom. The generational divide between the older and the younger over Social Security. Some think tanks on the right are really trying hard to divide the generations and tell young people that Social Security is a ripoff. They shouldn’t have to be paying for the older generations, et cetera, et cetera. We call BS on that. 

There also are a lot of young people who, if you ask them, they’ll say, oh, Social Security isn’t going to be around for me. And of course, you kind of addressed that a minute ago, that it will be around for you if we all advocate for it and don’t let our guard down. 

One thing that’s really impressive about your operation is that you have a younger staffer, Sadie Shattuck, who works on this very issue of outreach to younger people. Isn’t that right?

PAULA: Absolutely. And she is gaining momentum. It’s not declining. We started out with like 12 or 13 young people, we call them our Thought Leadership Council, and it’s gaining momentum. They’re even testifying and ready to march or do whatever they need to do. Hopefully that doesn’t come to that. 

And you’re right, Walter, they’re saying, look, for us, if I’m 20 years old, 22, 24, 28, whatever, just give me my money, let me invest it, and I’ll do better than the state government, because it’s not gonna be around anyway. But we know for a fact that’s not true.

As soon as the first crisis comes, you take that money and you go pay for your car or pay for your roof or pay for whatever. This is money that you have now put away for a time that you can retire and get that money. If you don’t believe it’s going to be there, there’s nothing I can do about that if you’re a young person.

But what we’re learning, Walter, is that there are people saying, well, listen, it may not be there for me as a 24-year-old, but I know my Aunt Nellie, or my Aunt Beth, or my Uncle George who depends on their Social Security, and I’m fighting for them to make certain that it’s in there. And what they’re learning, what we’re finding these young folks are learning, is that the more they dig into this issue, the more they realize that this is such a wonderful safety net for people later in life that they hadn’t really thought about before.

WALTER: You’re making some very excellent points, Paula, I must say. But I’m glad you brought the point up about, “Oh, I could have just taken my money and invested in the stock market and I don’t need Social Security for my retirement.” Well, what if you were about to retire in 2008 and your 401k was in the stock market? You were very much out of luck. The market goes up and down. You don’t know when it’s going to go up and down. Social Security is a much safer bet, at least for that basic financial security.

Of course, augment Social Security with 401k or IRAs or anything else you want to do, but let’s not get rid of Social Security and replace it with private investments. I did want to ask, because we are ramping up our own campaign here to educate young folks about Social Security. What kinds of events or outreach is Saide doing at AARP Michigan in order to reach these younger folks?

PAULA : Well, I think the younger folks are actually reaching out to other younger folks. Once they get engaged with us and they realize what’s going on, we’ve had them testify about age-friendly communities and why an age-friendly community is important. Because if we can help that next generation understand those needs, they then begin to see themselves, life goes fast, they’ll see themselves needing these same kinds of things, or at least they know someone who does.

So anything that impacts those older adults and the contributions that they make to society, and the respect that these young folks have for older adults.

WALTER: That is fantastic. I hope we can replicate that here in terms of reaching younger folks. Before we go, because this conversation has gone really fast. Before we go, is there anything else you want us to know about what AARP Michigan is doing or what people of all ages should be keeping in mind right now about aging and financial security and health security?

PAULA: Well, thank you for that. Just pay attention, please. You know, I know that people have so many competing priorities, but please pay attention. Because whether it impacts you today, it’s going to impact you tomorrow. Whether we’re talking about an age-friendly community where you can age in place, or you’re talking about Social Security, which millions of Americans depend on, or you’re talking about affordable housing, transportation, all this impacts everyone.

So please pay attention, lift your voice, and make certain that you vote, but also make certain that you know who you’re voting for and what they stand for.

WALTER: I can’t think of a better way to end this, especially this particular year. Paula Cunningham, thank you so much for doing this interview with us.

PAULA: Well, you know, we appreciate you and Max and the whole team over there. You’re phenomenal folks, and we appreciate all the work that you do and look forward to continuing to work with you.

WALTER: Right back at you. Thank you, Paula.

PAULA: Thank you. You take care.

WALTER: And for more resources and to learn more about everything that Paula and her team are doing, visit aarp.org slash states slash Michigan. And of course the website for this show and for our sister podcast is youearnthis.org. That’s youearnedthis.org. Our producer is Melanie Riley. Our engineer is Shahab Shokouhi. Our story editor is Donna Lack, and our editor is Steve Lack. The You Earned This jingle was written by Walter Gottlieb, arranged by Jeff Gruber and our You Earned This singers, and recorded at Blue House Productions in Silver Spring, Maryland.

Special thanks to our colleagues of the National Committee to Preserve Social Security and Medicare who helped make this program possible. I’m Walter Gottlieb reminding you: You Earned This!