Dan Gorenstein: Most of us have dealt with health insurance headaches: out of network doctors, crazy benefit booklets, bills you thought were covered.

​​Now imagine double that pain — enrolling in two insurance programs, two ID cards, two sets of rules, with almost no help.

That’s the reality facing some of the poorest and sickest people in the U.S. Known often as “duals,” they must navigate both Medicare and Medicaid.

Jean Minkel: People understandably think, well, if I have one insurance, that’s good. If I have two insurances, that must be better! And it’s like, not necessarily.

DG: Today, what life’s like for the 12 million people stuck in this bureaucratic morass and how lawmakers in Washington could chart a better path forward.

From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.

Saleema Render-Hornsby: So I’m Saleema. I’m 33. I live in the Bronx. 

Rochelle Render: And what is your condition, situation? 

SRH: Spina bifida.

RR: I’m Rochelle Render. I’m 50 years old. I’m the mom of Saleema and yeah, I’m a supporter of her endeavors and her aspirations.

DG: Saleema Render-Hornsby is on the soft spoken side, but compared to her mom Rochelle, everyone is soft spoken.

SRH: She’s back.

RR: I’m back. 

SRH: The mother!

RR: I don’t know if she spoke up because I was doing something else, but how her chair affects her confidence in dating. Turn it back on! Let’s talk about that.

DG: Rochelle is loud because she can’t afford to be quiet. Ever since Saleema was born with spina bifida — a condition that affects the spinal cord and limits Saleema’s use of her legs — Rochelle has had to speak up, pushing to make sure her daughter gets what she needs from school, from the city, from the health care system.

Saleema is one of the 12.5 million people in America who must navigate both of the country’s biggest public health insurance programs, Medicare and Medicaid, to get the care they need. People end up in this position because they’re low income and either disabled or over 65 — some people are all three.

You might think these two programs would work together to give this vulnerable population — about half of whom are people of color — more help, better benefits.

But that’s just not the reality. Instead, Medicare and Medicaid often clash, cause confusion and trap people with few resources in a maze of rules. 

SRH: We are very strong people for having to deal with this. Anybody that gets through this process is blessed because it’s a lot.

DG: Each program’s a behemoth in its own right. Medicare, the program for older adults and people with disabilities, tends to kick in first. [It] picks up the more urgent medical stuff — surgeries, hospital visits — while Medicaid, the program for people with low incomes, brings up the rear. [It] covers the other, more long term things — regular help at home, a long stay in a nursing facility.

But who covers what gets complicated fast and it’s easy for patients like Saleema to get exasperated.

SRH: Medicaid and Medicare and the doctors need to get it together. I shouldn’t have to jump in the middle of saying, oh yeah, I need this, this and this. After I’ve already went through that step of explaining what I need. Why do I have to keep repeating myself, saying ‘I need this, I need this’ until I’m blue in the face?

DG: Saleema and Rochelle’s latest journey into this bureaucratic jungle is their most important yet, because it’s key to achieving a dream both women share: Saleema getting her own place. 

RR: She’s 33 and she’s not out there running with the wolves yet. I need her to go running, alright? Because this old fox herself needs to do some other things.

DG: Rochelle likes to joke but she also knows what independence means to her daughter. Like every young adult, Saleema wants to find her people, her place in the world. She works hard, takes classes, is making plans for a career as a cosmetologist — one who specializes in caring for people with skin sensitivities like she has.

But she needs her health insurance to do its part and approve her request for a new wheelchair.

For about seven years, Saleema has had this hulking motorized chair.

SRH: And what do I call it? 

RR: You did name it…

SRH: The Maserati? 

RR: No. The Mercedes? The Cadillac. 

SRH: Cadillac.

DG: The Cadillac — a fitting name for a chair that costs 20,000 dollars. And it’s the kind of big boat someone a lot older and more frail than Saleema should be driving. It makes her self conscious. 

SRH: A more compact chair would make my self esteem better because, like, if it’s too big and clunky, people just automatically [assume] like, you’re old or things like that.

DG: Despite its shortcomings, Saleema says she could count on the Cadillac to get her where she needed to go — until the summer of 2019. 

SRH: I was on my way to an appointment and the chair stopped in the middle of the road.

DG: Imagine the scene: cars, taxis speeding by. The Cadillac busted. Broken. 

SRH: I could not move. And there was nobody to help me.

DG: It was terrifying, but Saleema risked it for a while and made do during the pandemic. But by early 2022, she needed something new.

She and her mom came here.

[Sounds of wrenches and velcro]

Jean Minkel: There you go! A little fine tuning…I’m going to do one more and make a couple of your middle straps even a little tighter. And how does that feel? 

Welcome to Jiffy Lube at ICS!

DG: Jean Minkel is senior vice president of Rehab and Mobility Services at ICS, or Independence Care System. 

The nonprofit helps keep many people with disabilities in New York City living the lives they want. And they know, of course, that a working, well-fitted wheelchair is as essential to independence as the air we breathe.

JM: If you can’t get out your door, there are these very, very profound interruptions and that affects people on a daily basis. 

DG: Jean’s team helped Saleema test new chairs and talked about what she’d need to live life without Rochelle around. Together, they landed on a much lighter, more nimble chair that Saleema could push herself, with a kind of booster wheel on the back if she needed a rest or some extra oomph.

Saleema could start to taste her new freedom.

SRH: With that chair, I could get a job. I could travel. I could be myself and experience life as a whole person.

DG: Jean’s team was quick to warn Saleema it could take a long time. 

JM: I have on occasion said to somebody at the end of our eval, welcome to conception, in nine months, if things go well, your baby will be available for delivery. [Laughs]

DG: This was not Saleema and Rochelle’s first health insurance rodeo. They crossed every t, dotted every i, spent weeks going to appointments across the city.

In late June — five months after visiting ICS to test drive different chairs — the first letter arrived. It was from Medicare.

SRH: I was a little bit in shock because I don’t, I can’t understand why you would deny me my way I get around. You’re telling me you’re denying me my legs?

DG: The chair request was flat out rejected.

SRH: I felt like they were taking away my liberty to move. And I was like, how dare they make a decision when they don’t live in my body?

RR: Saleema doesn’t curse at me often. We don’t have that relationship. But she said, Mommy, look at this shit! I said, What? I said, what? She was like they denied me. I was like, “What the hell?” I said, “Give me that letter,” you know? I’m like, Oh, no, I’m, you know, I’m on that. Like, okay, no, this ain’t going to happen. All right? I was like, “Call ICS! We definitely doing something.”

DG: Jean Minkel at ICS basically expected this first denial. It wasn’t her first rodeo either. In fact, she was glad to get the denial over with.

What Jean knew that Saleema was just learning was that Medicare only pays for equipment that people need to get around inside their homes — not outside. 

Medicaid, on the other hand, does cover a person’s ‘outside the home’ mobility needs, including a chair tough enough to traverse New York City’s streets. But Medicaid’s rules also say Saleema’s team has to try billing Medicare first even when there’s virtually zero chance Medicare will cover the thing.

Sure it sounds like the plot to a Kafka story, but Jean says this is just another example of how these two programs combine to make life harder for the dually eligible.

JM: It puts a big burden of responsibility on people that don’t have the luxury of understanding the bureaucracies, number one, and don’t have a lot of time given that everything in their lives takes more time.

DG: About 1 in 3 dually eligible people have a serious mental illness, almost half live alone or in an institution and nearly nine out of ten live on less than $20,000 a year.

Jean says very often, the first denial is the end of the story for most duals. In Saleema’s case, Jean assigned a full-time employee to chase down the necessary paperwork.

They immediately sent that first denial off to Medicaid to prove to them that Medicare wasn’t gonna pick up the bill and it was time for Medicaid to step up. But just a few weeks later, the insurance company that manages Saleema’s Medicaid came back with a big N-O. Request denied.

The team at ICS vowed to keep fighting, but the delays have taken their toll on Saleema.

With Saleema’s Cadillac breaking down, she’s been stuck in an inadequate backup chair that Rochelle had bought off Amazon for a thousand dollars.

SRH: It gets me from point A to point B, but it also gives me problems.

DG: Pressure ulcers, back aches, the rejections by both of her insurers have left Saleema in pain. She’s suffered through rides in city transit vans.

SRH: Every single bump it feels like your nerves are, like, smushed together and crushing, like, your bones. So everything is just outta whack by the time I get home.

DG: Living like this has forced Saleema to keep asking: Is the trip outside my house worth the hurt? Will my chair break down?

The family has mustered up all their resources, countless hours, pages of paperwork, their own money — all to meet a need that seems so obvious, so essential, so critical to Saleema’s ability to be a healthy, productive member of society.

And yet, 18 months and three denial letters later, they’re still waiting for a chair. 

After the break, a bipartisan bill targets this byzantine system and Saleema gets a final verdict. 

MIDROLL

DG: Welcome back. Stories like Saleema’s have caught the attention of at least a handful of lawmakers in Washington. Senior producer Leslie Walker has spent the last few weeks talking with Hill insiders, researchers and advocates about some of the policies being considered. 

Leslie, good to have you back on the show.

Leslie Walker: Thanks Dan. Happy to be here. 

DG: So, before we get into any solutions here, let’s define the problem. What’s the fundamental issue policymakers are trying to solve?

LW: Well, I think Saleema’s experience sums it up pretty well. After more than a year, multiple rounds of appeals with insurers, she still doesn’t have one of the few things she absolutely needs to keep her health and everyday life going.

Somehow, Dan, for dually eligible folks, these two systems — Medicare and Medicaid — have come together to make a whole that is in fact, worse than the sum of its parts.

And that’s despite the country spending nearly $450 billion a year on this group of people. 

DG: I can see why this situation has got Congress’ attention: red tape run amok, racial and social injustices, people with not one but two insurance programs still not getting what they need.

LW: Yeah there’s definitely no shortage of bones to pick here. What’s much harder — where you start to hear the crickets chirp — is finding a solution.

DG: Why is that, Leslie? There’s so much to fix!

LW: Look, the federal government can only do so much here, Dan. One of the two big programs here, Medicaid, is in reality mostly run by states and territories. They set many of the rules, who’s eligible for what, and pay a good chunk of the bills.

DG: So in other words here, Leslie, there’s not really one duals situation for lawmakers to fix. There are more than 50 different ones.

LW: Exactly. And on top of that, Dan, there are these three other big decisions that any serious legislation on this issue has to grapple with. Let’s call these issues the 3 M’s: models, members and money.

DG: Marvelous. So, let’s get cracking. What’s the tough choice facing lawmakers when it comes to that first M, models?

[Music from America’s Next Top Model intro]

LW: Well, it’s a question I think supermodel Tyra Banks put pretty well back in the early 2000s.

America’s Next Top Model intro: You wanna be on top? 

LW: Who will be America’s next top model?

DG: Can’t say I know this show.

LW: I can’t say that’s surprising. Anyway, you might not know this but people have actually been trying to make care simpler and better for duals as far back as the 1990s.

There are a few models out there. The weeds of how each one works is different and I won’t bore you with them, but they’re all basically trying to help duals get to the same place: a single insurance plan managing all of a person’s care.

DG: The idea being of course that would be more seamless, more coordinated — a better way to get people from point A to point B faster, more smoothly.

LW: That’s right. But here’s the problem.

I talked to Harvard researcher Jose Figueroa and he said we really have no idea which, if any, of these models works best.

Jose Figueroa: The availability of data to understand if and how these programs work is just not out there.

LW: The other thing about these models, which a lot of people call “integrated care plans” by the way, is even though many have been around a while they’re really not getting much traction. Only about 1 in 10 duals is in a truly integrated plan. Everyone is still going at these two systems alone.

DG: So I imagine the question for lawmakers here is do you zero in on one model and try to supercharge it with more policy power behind it or do you let them all keep going while we wait for more evidence to come in? 

LW: Right or door number 3: Do you figure all these models have all failed to catch on for one reason or another so let’s build something better from scratch?

DG: Got it, okay, so that’s the model conundrum. What’s the puzzle with your second M, members?

LW: This one’s kept health economists busy for a long time, Dan. 

And the question is this: How much choice should dually eligible people, who insurers call “members,” have when it comes time to pick their plans?

Allison Rizer: For an individual to have to scroll through three or four or 10 pages of health plans and find the one that makes the most sense for them, that’s not choice. That’s paralyzing.  

LW: Right now, Allison Rizer with the consulting group ATI Advisory told me that some dually eligible folks have more than 100 different plans to choose from. 

DG: 100?!

LW: Yeah, she and other experts I talked to believe that overwhelming amount of choice is one big reason why so few duals are enrolled in those more integrated plans we were just talking about.

DG: Sure and Leslie, this really is one of those quintessential health policy questions that comes up every open enrollment period.

The case for having so many plans, so much choice is that it’s hard to design just a handful of plans that work well for everyone. 

But leave people with all these options and research shows people often end up making a poor choice, pick plans that cost more and can even harm their health.

LW: You nailed it, Dan. And both sides of that coin are all the more true for this population. Duals’ situations are often far more complex than the average person’s and that can make having more choices helpful — or harmful.

DG: These perennial challenges. 

LW: Indeed. One fix Allison Rizer did float here, Dan, is this idea of setting a federal floor — some basic requirements around integration and coordination that every insurer would have to meet in order to offer their plans to duals.

DG: I see, so a kind of guarantee that no matter where you live or what plan you pick you’re going to get more help than most people do today.

LW: Exactly.

DG: Alright, so that leaves us with our last M: money. What’s the big question here, Leslie?

LW: This one’s a bit different, Dan. It’s less a question of what the government should do but rather how they should do it.

What they should do with money — most people I spoke to agreed — is make it easier for the dough to flow between the Medicare and Medicaid programs. The basic idea: Have these integrated care plans get a single pot of money to spend on each of their members.

DG: One person, one pot of money — that sounds like common sense. And would have made Saleema’s situation a lot simpler right?

LW: Totally. If Saleema was in one of these integrated care plans and the plan agreed that getting her a new wheelchair is good for her health, they could just pay for it. They wouldn’t have to chase down ridiculous denials and comply with two sets of rules tied to two separate pots of money.

DG: You said the sticking point here is not whether to make it easier for the money to move but how to get that money to move. What’s the deal?

LW: Well, any time you give insurers more control over a bigger pot of money, there’s always room for abuse. So oversight’s a real concern here.

And then there are some extremely wonky but very important questions about how exactly you’d have to change the law to free up this money without triggering a mess of unintended consequences that end up hurting the people you’re trying to help.

DG: Sounds like we should leave those details up to the legislative staffers to iron out over cold Domino’s in some Senate basement.

LW: Works for me.

DG: And speaking of legislative staffers, Leslie, we said at the start that there is some momentum here. What’s the latest? Are any bills actually tackling all three of the M’s?

LW: There were a handful of bipartisan bills that moved in that direction in 2022. And there’s one floating around the Senate now that goes a bit further. It’s led by Republican Bill Cassidy and supported by Dems like Tim Warner and Tom Carper. It’s still in draft stage, Dan, but as of right now, it actually seems like it would touch on all three M’s. 

DG: Alright, definitely sounds like something to keep an eye on.

LW: Yeah, and I should add, Dan, that even if that bill dies the Biden administration has been chipping away here. Maybe the most important thing they’ve done? Pushed states to offer more integrated options. That said, there is a lot more they could do. 

DG: So if you had to sum it up, Leslie, it sounds like you’d say people are cautiously optimistic we’ll keep seeing at least a bit of movement.

LW: Yeah I think that’s right. Whether through Congress or the administration, most people I spoke to were optimistic — with a heavy dose of caution — that we’ll see at least some incremental progress here.

DG: Leslie Walker, thanks for your reporting on this important story. 

LW: My pleasure, Dan.

DG: Saleema Render-Hornsby is also finally feeling like things are headed in a positive direction. Just last month, a year and a half after first seeing ICS about a new wheelchair, her Medicaid insurance plan approved the request.

SRH: I  jumped. I got really happy and a little bit relieved. It is less stress on me that I don’t have to think about that after all the other stuff I have to think about.

DG: Jean Minkel’s team at ICS had fired their last shot, filed for a hearing with the state department of health to review the Medicaid plan’s earlier denial. Not long after, the plan decided on their own to reconsider Saleema’s request.

She did have to redo all her paperwork and it could still take weeks or even months for the chair to show up, but Saleema’s circled a wheels down date that she’s pulling for: October 17 — her birthday.

DG: All this mental math the last 18 months — weighing the risks of going out, sacrificing her joy for the sake of her safety— it’s exhausted Saleema.

She says she’s ready to do a different kind of gambling. 

SRH: I’m going to Vegas. [Laughs] Yeah, a little bit of gambling, a little bit of sightseeing. I want to go see the Hoover Dam and the Grand Canyon.

DG: Saleema knows hiccups are still possible, even likely, but she’s cautiously optimistic.

I’m Dan Gorenstein. This is Tradeoffs.