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Why are millions of us – kids included – losing Medicaid coverage, oftentimes by accident? And how can we get it back? We’ll answer these questions with Medicaid expert Joan Alker, and hear Litha’s story – an Arkansas resident who lost coverage for five months, all while coping with life-threatening kidney failure.

Resources:

For research and articles from Georgetown University’s Center for Children and Families, visit: https://ccf.georgetown.edu/.

Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high-performing health care system. Learn more at CommonwealthFund.org.

SuChin Pak is our host. This bonus episode was produced by Giulia Hjort and mixed by Bobby Woody. Chrystal Genesis is our Supervising Producer. Jackie Danziger is our VP of Narrative Content. Executive producers are Jessica Cordova Kramer and Stephanie Wittels Wachs.

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To follow along with a transcript, go to www.lemonadamedia.com/show/ shortly after the air date.

Transcript

SPEAKERS

Joan Alker, Lisa, SuChin Pak

Lisa  00:01

I was shocked. I was frustrated because I’m like, I have chronic kidney disease. I also have asthma. I actually haven’t picked up my asthma medication since July, because I can’t afford it it’s 400 bucks, and I really need my insurance to be active 24/7 because I could end up in hospital no matter I mean, any second doesn’t matter.

 

SuChin Pak  00:28

That’s Lisa, a mom of two from the Marshall Islands who now lives in Arkansas. In late June of this year, Lisa found out through a letter that her family had lost their Medicaid benefits.

 

Lisa  00:40

As soon as I got the letter, I call them and see what is it that they need for me to get re enrolled. I turned in all the forms through their box because no one has time to go sit and wait three hours for a representative to come help you. So I just drop it off there. Come to find out they never received it, supposedly it’s missing.

 

SuChin Pak  01:01

This type of story isn’t unusual. Since April, the laws around Medicaid re enrollments changed. And this led to staffing shortages and Medicaid offices across the country. And with any sort of labor shortages, mistakes are more likely to happen like losing or misplacing paperwork. And for Lisa’s family, this mistake came with very real consequences.

 

Lisa  01:25

My daughter needs to be seeing a dentist ASAP but she can’t because we didn’t have any coverage at all. My husband also has an underlining condition he needs to be seen by primary doctor but of course, with the five months that I have insurance, we don’t have the funding to pay any out of pocket money if we needed to see the doctor.

 

SuChin Pak  01:44

This five month gap in coverage has been nerve racking for Lisa, she couldn’t get all the care she needed to manage her chronic conditions. And she was bumped to a lower spot on the waiting list for a kidney transplant. Luckily, during the five month gap, she’s still been able to get dialysis three times a week which is covered by Medicare Part A for people with end stage renal disease like her. That’s Medicare, not Medicaid. But there were plenty of other health care costs that weren’t covered.

 

Lisa  02:14

We have bills coming in left and right from our medical visits and all the end. I have over $1,000 in debt and of course it affects me I mean, I do also have anxiety, also depression. So it’s not helping my health of course but you know, I I lift of myself in prayer, my family in prayer. I mean, I try to let God lead the way.

 

SuChin Pak  02:40

On October 1 Lisa and her family were finally re approved for Medicaid. But Lisa is worried that Medicaid won’t reimburse her for the five months of out of pocket costs are those unpaid bills that have been piling up because that would require Medicaid to admit they made a mistake in the first place. And Lisa  is not confident they’ll do that. This is SuChin Pak, host of uncared for and we’re back with a bonus episode on Medicaid dis-enrollments. The roadblocks Lisa face when trying to get her family back on Medicaid aren’t unique. Joan Alkire, Executive Director of the Center for Children and Families at Georgetown University says this is because of Medicaid so called Great unwinding. Joan has been researching Medicaid for the past 20 years. And today, she’s going to help us fill in the blanks about Medicaid, dis-enrollments, what they are, why they matter and what needs to be done to protect people like Lisa. John, thank you so much for joining us. Let’s start with talking about Medicaid, dis-enrollments. How would you describe to someone who’s never heard of this what this exactly is? And just in general, like why this topic matters?

 

Joan Alker  04:04

Well, one of the things that happened as part of the COVID Relief packages that passed was that states got extra federal money for their Medicaid programs during the pandemic and of course, Congress didn’t want people to be losing health insurance. So the role of Medicaid was even more important. So Congress added an additional protection when they passed this family’s first act that President Trump signed. And basically it said in return for this extra money, states cannot kick anybody off Medicaid involuntarily but Medicaid because it is run by states. There’s lots of different wrinkles, and particularly in states that are sometimes hostile to Medicaid and the families that it serves. They put up more red tape, either upon enrollment or renewal, make harder for families to get and keep their coverage. And they couldn’t do that during the pandemic period, because of this rule that they couldn’t kick anybody off. So fast forward to spring of 2023 and the public health emergency is lifted. And Congress actually said, as of April 1, states could start disenroll in people who are no longer eligible. We had over 90 million people on Medicaid, a quarter of the country, half more than half of all children covered by Medicaid at the start of this year. And everybody has to have their eligibility checked and that’s where we are today.

 

SuChin Pak  05:45

Do you have any idea or an estimate of how many people whose coverage have been wrongfully terminated?

 

Joan Alker  05:54

Yeah, good question again, it’s going to be different for children versus adults. It’s harder to get a sense for adults. So we’re tracking a net change number, and our net change total numbers over 6 million now and our kids are 2.2 so that’s new, we’ve got about 4 million adults.

 

SuChin Pak  06:15

Why is this happening in such huge numbers now?

 

Joan Alker  06:19

We are really at a pivotal moment. And as is usually the case, there’s good news and bad news. And I’ll start with the bad news. We were expecting this process to be really rough. We know that states are understaffed. There are families who haven’t been through this process or eligibility workers who haven’t been through this process. There are some states for political reasons, they really want to get a lot of folks off quickly. And we projected that as many as 6.7 million children could become uninsured for some period of time. So the process in many places is not going well. There was a huge call it a computer glitch, I think that’s too generous. Where many children, some adults as well, we’re getting determined incorrectly. And they were getting kicked off by mistake. So the Biden administration did step in and is working on getting that fixed but that was scary. But we know for children in particular, that the majority of them are going to remain eligible. And we’re seeing very high rates of what are called procedural terminations, or red tape losses. These are simply when a family doesn’t make it through the process, for whatever reason, you know, think about a lot of families moved during the pandemic, maybe the state doesn’t have the current address, they don’t get the letter. They’re not online, they’re not able to access the call center to get them help, particularly if English isn’t their first language. There’s just many ways this process can go wrong. And we’ve heard of many different ways that it’s been going wrong. So that’s very troubling. I think on the good news side, this has really laid bare that this system needs cleaning up. And it’s not functional. And we should not be tolerating this for children or anybody, frankly.

 

SuChin Pak  08:15

Which populations then, obviously, children, we’ve covered that, but which populations in general are being hit hardest by these dis enrollments, and why?

 

Joan Alker  08:26

So in terms of adults, we have 10 states now, primarily in the south, not exclusively, but Texas, Florida and Georgia are the big ones. And they have not expanded Medicaid under the Affordable Care Act. And so they have a coverage gap for parents below 20% of the poverty 30% of the poverty. Similarly in states that have expanded Medicaid, and that goes up to 130% of poverty for adults who are not disabled. Some of them are over income, and they hopefully will find their way to the marketplace where they can get subsidized coverage. But again, we’re seeing a lot of procedural denials there. So we don’t know if they’re ineligible. And then there’s another group which is postpartum women and people. And those have higher eligibility levels. But let’s say somebody gave birth in 2022. And now their incomes over income for the regular parent category. That’s another group where we know there are some coverage losses.

 

SuChin Pak  09:36

I want to just briefly touch on what is that reinstate process looking like? I know, it varies so much from state to state. If I’m sitting here, I’ve lost coverage, I know that I am eligible. What is that process looking like for the average person?

 

Joan Alker  09:53

So for adults, I think their best bet for getting help is at community health clinics, they have often have navigators who can help try to reinstate Medicaid coverage. Now, there is a 90 day retroactive period. For Medicaid in most states, you should be able to get back payment of your bills from that 90 day period, unless you live in one of the states that has waived this special rule. And there’s about 10 of those. But that is key so it is important for people to understand they should keep track of their bills, because they may be able to get them paid retroactively, so that’s critical and then there’s this other 90 Day reconsideration period. And that means that if your coverage terminated July 1st, and you think, Oh, this was wrong, you don’t have to file a whole new application, you just have to provide the information that the state said it didn’t have to make that final determination, you should be able to build on what’s already in your file now, unfortunately, in the real world, though, we’re hearing a lot of stories that that’s not actually how it’s working in practice. But in theory, that’s how it’s supposed to work.

 

SuChin Pak  11:12

So what are states that seem to be moving in the right direction, or at least responding to this crisis that’s happening in Medicaid?

 

Joan Alker  11:20

Yeah, so Oregon was really the first and what Oregon did is they really restructured their whole system in anticipation of this process, they were really ahead of the curve. So they pioneered this policy of continuous coverage from zero to six, and then two years after that. So that goes all the way, you know, from age six, all through adulthood, they’re going to have two years of continuous coverage. Washington state has also gotten approval to do this zero to six policies. So that’s great, New Mexico was in the queue as well, although New Mexico, I have to say is is doing very poorly. On the unwinding process. Interestingly, we’ve seen some red states look at this policy, Ohio being most notable Ohio, you know, all red state is in the process of seeking a zero to three continuous coverage for infants and toddlers. So that’s exciting. And we’ve got five or six other states of Minnesota, Colorado is another one DC, where I live is also pursuing this. So this is exciting, I mean, this is in sort of rapid succession, we’ve seen about 10 states who are considering these periods of longer eligibility, which is great. So I hope more states are gonna look in that direction.

 

SuChin Pak  12:40

Is there anything that families can do who rely on Medicaid to keep this from happening again?

 

Joan Alker  12:47

Yes, absolutely and I’m glad you asked that. First of all, I really want parents to know that if your child loses Medicaid, there’s a very good chance they’re still eligible. And so you got to get in there and try to get it back. If you do get kicked off, do you think it’s a mistake, your local legal services providers are really the ones that can help you probably the most, but your pediatricians, your schools, whoever you feel comfortable talking to about this should be able to help you navigate a way for your child to retain their coverage.

 

SuChin Pak  13:24

If you had a magic wand, and you could make legislators make this easier and more equitable for everyone. What could they or should they be doing to help not only kids, but adults that rely on Medicaid?

 

Joan Alker  13:42

First of all, if I had a magic wand, every state would enact Medicaid expansion immediately. For adults, it’s just a huge coverage gap. It has disproportionate impacts on communities of color. And that’s what I would do on the adult side. But you know, children a lot of times are the Vanguard, you know, we make policy change for children and at least in the healthcare space, that often kind of opens the door for adults. And I think we’re ready as a country to move to this kind of bold idea that no baby leaves the hospital without insurance. And if they don’t have coverage through their parents, employer, just put them in Medicaid, and the parent doesn’t have to worry about parents have a lot to worry about particularly low wage workers, the lack of childcare, the pressures on their budgets, so just take that worry off their plate. Let’s have a bold vision. No baby leaves the hospital that coverage. They’re covered till they’re six, and then we take it from there.

 

SuChin Pak  14:47

Before we leave today, is there anything else that we didn’t get to so any other red flags that that you’re seeing on your end that we didn’t discuss here?

 

Joan Alker  14:58

You know, we have Have a very aggressive ideological agenda, which is to really run Medicaid down to claim that Medicaid is riddled with fraud and wasting taxpayer dollars. And we have to reshape that narrative. Medicaid is the lowest payer in our system. It is partly why we have access problems and Medicaid. But it is a very efficient and Lean program. And to the extent that there are absolutely legitimate concerns about taxpayer dollars, it should be looking at the managed care companies, many of whom are for profit that are in fact providing the care. And let’s see, yeah, let’s get better oversight of these managed care companies. I’m 100% for that. It is not about fraudulent children, or families being in Medicaid, there’s just literally no evidence of that it just doesn’t happen. That narrative is driving a lot of this push to get families quickly off coverage, even when they’re still eligible. And so really speaking truth and laying out where politicians energy should be focused on is important.

 

SuChin Pak  16:16

Joan, I am so glad that you answered this question, and that you filled in this gap for me. So thank you so much for your time.

 

Joan Alker  16:25

Oh, thanks so much for having me.

 

SuChin Pak  16:29

If you’re looking for help with your Medicaid renewal or reconsideration, remember that you have options, you can contact your local legal aid services, like Joan suggested, or your state’s Medicaid call center. Many call centers have added translation services for callers whose first language isn’t English. And some states have chat features on their website if you prefer messaging a representative instead, if you’re looking for in person help, it’s worth getting in touch with local community based organizations, because chances are they will have a navigator on staff who can help you fill out your Medicaid application or enroll in a subsidized plan if you’re no longer eligible for Medicaid. And remember, try to keep on top of it and stay organized like Lisa.

 

Lisa  17:16

Make sure you have everything all together, your ID if you mostly use your passport identity for your wages if you’re working and everything like the kids birth certificate all together at once so you don’t have to keep going back and forth. And then just always follow up even though they tell you you don’t, you’re not approved because of this and that. Keep fighting for it, don’t give up.

 

SuChin Pak  17:40

Nncared For is a production of Lemonada Media,  I’m your host SuChin Pak. This bonus episode was produced by Julia York and mixed by Bobby woody crystal Genesis is our supervising producer. Jackie Danziger is our VP of narrative content. Executive Producers are Jessica Cordova Kramer and Stephanie whittles wax. This season of uncared for is created in partnership with the Commonwealth Fund. There’s more in cared for with Lemonada premium subscribers get exclusive access to bonus content, like interviews with health experts, midwives and doulas. Subscribe now on Apple podcasts, follow Uncared For wherever you get your podcasts or listen ad free on Amazon music with your Prime membership.