B (2:51)

What we are doing is guiding the very foundation of who we are as a country and the promise that we make to each other as Americans. And we need to reclaim that. This is our story, it's not theirs.

A (3:12)

I'm Yvette Nicole Brown and this is squeezed. 80 million Americans depend on Medicaid. 80 million. It's our country's biggest health care provider. And this summer, it got hit with devastating cuts. The new budget signed into law by President Trump will cut more than $1 trillion from federal spending on Medicaid, the Affordable Care act, and snap. I can't overstate how huge these cuts are. They're going to hurt so many caregivers and people who need care. Women, immigrants, and communities of color are going to be hit the hardest. These are scary and uncertain times. So in this episode, we're gonna dive right into it. We'll hear from a mom in Arkansas about what's at stake for her son who relies on Medicaid for care. But first, we'll talk to AI Jen Poo about the fight she's leading for Medicaid. AI Jen is president of the National Domestic Workers alliance and executive director of Caring Across Generations. She's also a close friend. Here's what I love about AI Jen. Even when things feel impossible, she never backs down from a fight. She's a real warrior for good. She's leading the charge to defend Medicaid and showing why these cuts will affect all of us. As much as I am happy to see your face and to see all the things that you're doing, I am so sad that we are fighting through the dark time for caregivers and care workers. How are you feeling? How are you? Are you optimistic? Are you worried? What are the feelings right now as we face what we're facing right now in this country?

B (5:03)

I'm feeling a lot of anxiety and fear and devastation, frankly, for what I know is gonna be a lot of pain and suffering on the part of so many caregivers who will lose their access to healthcare, lose their access to home care and all of that. And I also believe that every crisis creates openings. What does it look like for us to take this time to imagine the system that could work for us, that would serve us, that would be better than what we have? So it's not just going back to what was before this, but actually creating something new and even better. Even better. That's what is my North Star is the potential to reimagine.

A (5:53)

This really sums up AI Jen as a person in the darkest of times. She's still hopeful. And even though she's become one of the most powerful voices in the movement for caregivers, she's also got a connection to this cause that is deeply personal. I know your life story is a lot like mine. We're Both deeply rooted in caregiving. For the listeners who don't know your story, can you share a little bit about your background in caregiving with your own family?

B (6:23)

So my first encounter with our caregiving crisis was as a granddaughter to grandparents who played a huge role in raising me. And when my grandfather lost his vision and needed more assistance, we did everything we could to meet his greatest wish, which was to stay at home until he died. But we couldn't find home care assistance that would meet his needs. The care that he received was really horrible. It was dehumanizing. He was sharing a room with five other people. The food was unrecognizable. He did not eat. He was a shadow, a shell of who he was. It broke my heart. And I kept thinking, like, how could it be that there's no better option here? How could it be that the people who poured into us our whole lives when they need assistance, love, humanity, care, connection, we just don't have it? How could that be?

A (7:25)

Listen, there are a variety of answers to AI Jen's question, but one of them is that the healthcare system was never designed to truly care for our loved ones.

B (7:33)

Our whole healthcare system is designed to treat problems, not people. Right? You treat healthcare problems or illnesses or diseases, but you're not actually treating the humans who are suffering. I think that if we kind of started from scratch, like an Etch A Sketch, like young people don't know what Etch A Sketches are.

A (8:03)

I know what it is, girl. I know what it is.

B (8:06)

If we started from scratch and reimagined the healthcare system and our whole caregiving system from the place of what do the human beings who have these fundamental needs that we all share need, and what would it mean for them to have dignity, agency, and the ability to actually overcome whatever it is that they're facing and or manage through it with dignity, and who could be brought into the process, you would immediately think to bring in the family caregiver, the home care worker, everyone involved to be a part of the solution.

A (8:46)

Our health care system, Medicaid included, is so far from perfect. Take the fact that more than 700,000 eligible families are stuck on waiting lists for home care. And even with Medicaid, Medicare, and the Affordable Care act, over 25 million Americans had no insurance at all in 2024. Still, Medicaid represented something important, a promise to care for one another as a country. So what happens when that promise is broken? After the break, we'll hear more from Igen on the changes coming for Medicaid. And we'll talk to Kelly Fountain, a mom in Arkansas who relies on Medicaid for her son's care.

C (9:30)

I want to share a new podcast with you that has my attention on so your parents are Old Journalist Vanessa Gregoriatus talks to friends, experts and celebrities about the chaos of dealing with aging parents. From Medicaid nightmares to emotional meltdowns in storage units, it's a brutally honest, often hilarious look at one of life's most disorienting stages. Come for the catharsis, stay for the gallows humor and unfiltered conversations. If you're currently the parent to your parents, this is your group chat in podcast form. You'll hear from talk show host Lisa Gibbons, who talks about her own parents, comedians Lewis Black and Kathleen Madigan, someone whose father was in the mob, a real estate agent on what to do with your parents home, a filmmaker on the joys and struggles of caring for aging loved ones and so many more. Find so youo Parents Are Old wherever you get podcasts.

A (10:27)

Medicaid coverage already fell short for so many Americans even before it was gutted. Now these new changes will go into effect in December 2026. But before we talk about how they might impact real people, I asked AI Jen to help us understand who actually depends on Medic in the first place. I want you to set the scene. 80 million Americans rely on Medicaid. That's huge. So tell me more about this group of people who's getting support for Medicaid.

B (10:55)

Okay, yeah. This is important because there's all kinds of mythologies that you've been hearing, especially from the people behind these horrible cuts about the people on Medicaid. The people on Medicaid are you and me the people on Medicaid. I guarantee you if you yourself don't rely on Medicaid, you know and love someone who does. It's designed as a program for low income Americans to help low income Americans afford health care. But what it is in practice is a health care program for 80 million people. It is the program that funds 40% of childbirths in our country. It is also the only way that most Americans who get access to nursing home care or home care, any kind of care in an institution or in the home and community. The majority of them get access to it because of Medicaid, some of the most essential and important care that we all rely on as families and communities. And the thing about Medicaid that's different from what most people understand is that there's so many middle class people who are on Medicare because we don't have a long term care insurance program in our country. Medicare doesn't pay for long term care. So the only way you can get it is if you pay for it out of pocket, which most Americans. Literally only a tiny percentage of Americans. There you go. So the only way to be eligible is to spend down your savings to get access to Medicaid. And that is why Medicaid is the single largest payer for direct care worker wages in the country. It's because it's what's paying for our care.

A (12:52)

Okay, let's shift a bit and let's talk about these cuts. As someone who's been fighting for caregivers and care workers for decades, what was your gut reaction when you first heard about the possibility of so many people losing Medicaid coverage?

B (13:05)

You know, I was of two minds about it. On the one hand, I thought there is no way they will actually go through with this same.

A (13:15)

I was naive as well. Right.

B (13:18)

Like I just. The extent to which people will go for political gains. I just thought there would be a line where too many people would lose too much, too many lives would be lost. Too many constituents of the decision makers who actually were gonna make this decision. Too many votes.

A (13:40)

Yep.

B (13:41)

You know, I just. And so on the one hand, I was like, we have to fight because we could win this. Right. Whereas a lot of people were more cynical and thought, there's no way that we're gonna win and what's the point? But when healthcare for eight people is on the line, that's enough. Let alone 80 million.

A (14:03)

80 million. 80 million.

B (14:05)

We have to fight. This is really about the soul of the country. This is about how we look ourselves in the eye.

A (14:14)

Yeah, yeah.

B (14:16)

And say we did everything we could. And.

A (14:20)

Yeah.

B (14:21)

So we fought.

A (14:24)

The nonpartisan Congressional Budget Office estimates more than 10 million people on Medicaid will lose their health insurance. That's a staggering number. But I think it's also important to understand that how that's going to happen. What new requirements are going to make fewer people eligible for Medicaid? Can you tell me the different reasons and ways people could lose their coverage?

B (14:51)

Yeah.

A (14:51)

So people know because I think they're thinking it's somebody else. And really, when she said it's you and me, it's your mom, your dad, your brother, your sister, it's us. So what are the ways that all of us could lose coverage because of these cuts?

B (15:03)

Well, I'm so glad because we do have to make this plain and concrete because it is going to affect our lives in really concrete ways, and we should know we should be ready. So one of the big things that's going to happen is work requirements. So right now, it's already really challenging to apply for Medicaid to meet the eligibility requirements and to do all the paperwork required, assemble everything, submit it, and then get approved. Okay? So there's a whole process there. Now they've added this additional layer where you have to essentially prove that you are working every six months. And there are some proposals to force people to reapply every month, to reattest to their work status every single month. And you and I both know that working people, we don't have time. Time. And navigating a bureaucracy is, if nothing else, time consuming. And then you add the number of people who have disabilities, and these reporting systems are so inaccessible. I mean, it's just going to mean that a whole bunch of people are going to lose their coverage just by attrition. And on top of that, if you're working, which is what you're supposed to be trying to prove, you don't actually have time to be constantly proving that you're working.

A (16:36)

Right, because you have to work. Right?

B (16:39)

And what if you're a family caregiver and you actually can't leave the person in your care in order to get a job outside of the home?

A (16:48)

Right. Because they do that, because they don't see caregiving as work. That's not a job.

B (16:53)

It doesn't count.

A (16:54)

It doesn't count.

B (16:55)

So it doesn't count. So work requirements are a big issue. The other thing is, in general, states are going to have to be filling this giant hole of federal funding that they used to get for Medicaid. And in some states, Medicaid is a third of the budget. So filling that hole means costs of transportation, costs for housing, costs for all kinds of things are going to be going up.

A (17:26)

Here's the thing about these work requirements. Most Medicaid enrollees are already working for those that aren't. Nearly three in ten have valid exemptions. They're caregivers. They're sick or disabled, or they're in school. So what happens now? Like AI Jen explained, people are going to lose coverage whether they can't keep up with all the new paperwork or aren't able to find work in the first place. The bottom line is real people are going to be hurt by these requirements. Not only Medicaid recipients, but their families and caregivers, too.

D (18:04)

I'm angry. I'm very angry at my representatives. They have voted for bills that will substantially increase their wealth and help them, but they don't help us, they don't help Colby, they don't help his community, and they don't want to hear from us.

A (18:25)

That's Kelly Fountain Talking about her 25 year old son, Colby. They live in central Arkansas, where Medicaid waiver programs that families like hers depend on are now under threat from cuts. Colby is a Medicaid recipient. He has autism and a rare genetic disorder called Haploin sufficiency syndrome.

D (18:43)

Some of his joints are actually fused. Some of his bones are fused so they don't flex, they don't bend at all, and that's painful. He has GERD reflux. His pancreas is not working. He gets tired easily. He has problems with his grip and problems with his balance.

A (19:04)

For years, Kelly fought to get answers about why her son was struggling. The breakthrough came when Colby qualified for Medicaid.

D (19:13)

Because of Medicaid, we were able to get him genetically tested, which we pushed for for years. He was genetically tested three times, and the third time is when they found this variation, which is just two chromosomes flipped. Those two chromosomes are what causes an array of health problems, learning disabilities, and it's been a massive ordeal to navigate the system.

A (19:50)

These days, Colby lives in an apartment with a roommate and has staff support thanks to all of Kelly's work navigating the system for him. He moved into his apartment last spring, but getting there required being on a waiting list for over a decade.

D (20:04)

Colby was on that list for 13 years. Waiver services is what provides you with respite care. It provides you with the ability to live more independently. It's what helps you get any type of supplies that you need. If you need really expensive medicine, it helps you with transportation.

A (20:30)

Before getting into the waiver program, caring for Colby was more challenging. Kelly and her husband both worked full time, plus they had Colby's three siblings to care for, too. Kelly was exhausted. Her family just couldn't do it anymore. So they moved from rural Arkansas to Little Rock, hoping for easier access and better services. But even with more options available, the support still isn't enough.

D (20:55)

I don't think that a lot of people really understand how difficult this is. Even with waiver. It's, it's a lifeline, but it's a rope that is frayed and has one little thread that's, you know, still connected when it could be a chain that multiple people are, you know, accessing at the same time. And it's, it's not only unfortunate, it's devastating.

A (21:32)

Even now, with Colby living semi independently, Kelly is still doing most of the work of caregiving.

D (21:38)

I work full time, and I am still doing all the duties that a caregiver does. I'm still making all of his appointments. I'm still, you know, my husband and I are taking him to his appointments. We are getting all of his medicine, taking all of his medicine to him. We are helping him with his grocery shopping and his meal prep and cooking, and, you know, we're making sure that he has clothes and that he's doing everything he's supposed to do. Now, his staff does make sure that he is bathing, that he's safe, that he is taking his medicine, that he's eating.

A (22:19)

Kelly's hope is that Colby can one day live on his own near the family. But these Medicaid cuts would make that dream impossible. Without the waiver program, Kelly says there's no way they could afford to support him. His Social Security brings in less than $11,000 per year, nowhere near enough to live on. And the cuts to snap benefits Colby relies on will only make things harder. Then there are the new work requirements that could strip Colby of his coverage entirely. That's because Kelly says he'd need supportive employment, which is nearly impossible to find in Arkansas.

D (22:54)

He has to have someone there giving him the instructions in such a way that he can understand and we can't access that. We have tried and tried multiple times through multiple different venues and have not been successful.

A (23:12)

In the end, Kelly told me her family is planning to leave Arkansas entirely.

D (23:18)

We're going to move to an area that provides more assistance, provides more support. Values their disability community. There are states that value their disability community, believe it or not. They see their value, they see their worth, and they include them into the community, and those states thrive. Unfortunately, Arkansas does not see that value.

A (23:45)

It's devastating to realize that families like Kelly's are having to consider uprooting their entire lives in the hopes of finding more support. But after years of fighting through this system, Kelly understands what's really at stake here. Not just for families like hers, but for all of us.

D (24:03)

None of us are safe. If you aren't going to stand up for people in a most vulnerable community, who will you stand up for? This is going to come to your doorstep, because if you live long enough, if you're fortunate to live long enough, you're going to be disabled at some point in your life, or you're going to be a caretaker of someone who's disabled at some point in your life, and you don't want to wait until that time comes to find out how hard it is to navigate this system. Because when you call on your representatives for help, they do not answer. They don't care about you.

A (24:46)

Listening to Kelly, I kept thinking about what AI Jen had told me earlier about the power of stories like hers. Because it's one thing to read headlines about Medicaid cuts, but it's something else entirely to understand what Medicaid actually makes possible in people's lives and what gets lost when that support is ripped away. So how can we fight back for families like Kelly's? And after the break, AI Jen joins us again with some answers. Now for people listening who aren't on Medicaid, I want to once again make it clear why these cuts actually affect all of us. So can you explain the ripple effects for those who may be thinking, well, I'm not on it, so it doesn't affect me, yes, it does. Can you explain what some of the ripple effects will be for those people as well?

B (25:39)

Well, there will be less access to care for everyone. Medicaid is a part of a larger health care system that everyone uses. And so think about it from the standpoint of, say, you need home care. Every home care agency gets a portion of its revenue through Medicaid. And to the extent that Medicaid funding gets cut, the services, the quality of services, the staffing, everything is going to get impacted in that home care agency or in that nursing home where you get services. And then the costs are going to go up because somebody's got to bear the brunt of the absence of those federal dollars. And in a lot of cases, it's going to be passed on to us, the consumer, whether or not we are using these programs. We are users of a broader health care system that Medicaid is a huge payer into. And without those dollars, a lot of that funding need and gap is going to be passed on to us in different ways. So our costs are going to go up, there's no doubt. And it's going to get harder to get access to quality care.

A (26:57)

So what happens when fewer and fewer people have coverage? Providers have to cover their losses, so they raise the cost of care for everyone. And then there's the care economy. So many other jobs are at risk without enough Medicaid funding.

B (27:12)

If 70% of home care workers are funded through the Medicaid system, it means we're gonna lose a lot of jobs. And those jobs are not just serving Medicaid patients. They're also serving clients who are not On Medicaid, that's us, that's you and me. So we're just, we got to start to think of all of these. I mean, it's all interconnected. In the real world, human beings are interconnected, and so are these systems that serve us in our human needs. And when we're talking about such a massive cut, there's no protecting, there's no shock absorption. It's. It's just going to be shock and going to absorb.

A (27:59)

Wow. I feel like as a nation, we need to get back to I am our brother and sister's keeper. Yes, please, can we, can we just get back to seeing the humanity of each other and seeing brotherhood and sisterhood in each other? Because when you see someone as other, sometimes it's easier just to kind of turn your head away when they're going through what they're going through. But what we're learning is that cruelty starts in one place, but it doesn't end there. So we need to be mindful that it may start over on the corner, but it's gonna come down your street too. And you need to be prepared. And caring for others is how we get there. Part of making change seems to be helping people understand that caregiving isn't just an individual or a family issue. It's something we all have a stake in. When we talk about, even on Squeeze, we say, this is for me, you and future you. Like, if it has not affected you yet, it eventually will. How are you working to spread the message that caregiving is something that will affect all of us? And what's the best way to get that message out as it feels like every caregiver is now under attack?

B (29:02)

Well, this is where I'm so grateful for your voice and this podcast. I mean, any and every one of us has a care story and we all have different networks and different platforms. And to be able to from wherever you sit, to care out loud, to share your story, to talk about the experience of caregiving in all of its beauty and grace and all of its hardship, and to be able to say, hey, some of this hardship is inevitable. We will all grieve, we will all face loss, we will all face illness. But some of this is unnatural. The cruelty of these cuts to Medicaid is unnatural. And frankly, the cruelty that we're all left on our own to figure out how to navigate and afford these systems with no assistance is actual cruelty.

A (29:56)

It is.

B (29:57)

And it's not sustainable when it affects 105.6 million caregivers in our country. It's actually not practical, it's not sustainable. It's not good for the economy. It's not good for anyone. So it's way beyond our individual needs. And that's where we can say, okay, we're doing the very best we can as individual caregivers, and we have to support each other in that. And then we also have to come together to say, how do we change the system for all of us? Right?

A (30:28)

Like AI Jen says, this loss is unnatural. And together we need to do everything we can to support our communities that are going to feel this loss the hardest. So I wanted to know, what does that actually look like in action? Where are your boots going to be on the ground? And how can I take part and everyone listening take part?

B (30:53)

Well, next year, we want to go through what we're calling unprecedented care conversation and consultation process, where we want to talk to a million of you out there in the country to get your thoughts on the kind of caregiving system we need in this country and learn from your experiences with caregiving. And we want to collect all of those stories and all of that data to launch an effort to build the actual caregiving system that we need for the future, like a new Social Security Act. When they passed Social Security in the 1930s, it was out of this crisis and under unprecedented inequality and a Great Depression and a pandemic. And the original vision of Social Security was not just to prevent poverty and older age, but to also offer comprehensive health care, disability care. And that promise took another decade, another two generations to realize. With the passage of Medicaid and Medicare, we are now at the next moment for a great reset, renewal, reimagining of the care that we need in the future. And I want to engage you and a million caregivers next year in what it looks like to build that and to be that. And it's going to have to happen from the ground up. So I'm talking community dinners where you invite your friends or, you know, your three other sorority sisters who, you know are caregiving right now, like, just calling them up on the phone and being like, hey, what do you think about this? Could you fill out the survey and would you come to a meeting? Or, you know, and it's. We're going to go old school, grassroots, going to get back to the basics.

A (32:56)

I do think we have an opening here. I think we have a chance to build something where no one has to navigate illness, disability, aging, or parenthood alone, where families like Kelly's don't have to make impossible choices. Like moving away from home just to find more support where care is just a given because we've all decided to show up for each other. Squeeezed is a Lemonada Media original. I'm your host. Yvette Nicole Brown, Lisa Fu and Hannah Boomershine are our producers. Muna Danish is our senior producer. Bobby Woody is our engineer. Our theme music is by Andy, Kristen's Daughter, with additional music by APM Music. Jackie Danziger is our VP of Narrative Content. Executive producers are me, Yvette Nicole Brown, Jessica Cordova, Craig Kramer and Stephanie Whittles. Wax this show was created in partnership with the Robert Wood Johnson Foundation, a leading national philanthropy dedicated to taking bold leaps to transform health in our lifetime and pave the way together to a future where health is no longer a privilege, but a right. Follow squeeze wherever you get your podcasts or listen ad free on Amazon Music with your prime membership.