‘Powerless’: Indiana families describe the toll of losing Medicaid access

Days later, however, Thomas’ nursing agency called with different news. His Medicaid coverage had been terminated.

For the next two weeks, Holliday-Smith spent hours on the phone with FSSA, returned to the county office with more documentation and tried — “painstakingly” — to understand why the state kept asking for new information. At one point, she said, she was told Thomas needed an asset verification.

“Thomas is 5,” she recalled thinking. “He has no assets.”

The interruption threatened far more than an insurance card. Thomas, who has cerebral palsy, is nonverbal, deaf and unable to walk. Medicaid helps cover private-duty nursing, respite care and other services that he relies on every day, allowing him to remain safely at home with his family.

“Not gonna lie,” Holliday-Smith said. “I cried. The frustration had finally boiled over to tears.”

Thomas’ Medicaid coverage was eventually restored in mid-July after the family repeatedly contacted FSSA and sought help from state lawmakers. Getting Thomas back on Medicaid brought relief, Holliday-Smith said, but not “permanent” peace of mind.

“It’s like you’re in fight mode, fight mode, fight mode,” she told the Indiana Capital Chronicle. “The stress is high. The anxiety is high. And then all of a sudden, ‘Oh, it’s magically better.’ But then you’re trying to come down off of it … and you’re like, ‘Well, what’s going to happen the next time?’”

Holliday-Smith is one of thousands of Hoosiers whose lives have been upended during Indiana’s post-pandemic Medicaid eligibility renewals. The process has left some families fighting for weeks or months to restore coverage they believed they still qualified for. Others have lost benefits altogether under changing eligibility rules.

Interviews with Medicaid recipients, parents, caregivers, enrollment counselors and disability advocates describe a system in which many Hoosiers remain eligible for coverage but struggle to navigate increasingly complex renewal requirements, often leading to delayed medical care or interruptions to disability services.

Others said policy changes have left them no longer eligible for Medicaid or certain services, forcing difficult decisions about how they’ll continue paying for medications, doctor visits and disability support.

The Capital Chronicle spoke with Hoosiers across the state whose experiences reveal how the Medicaid renewal process breeds uncertainty for many families, from confusing notices and repeated eligibility checks to long waits for answers and fears that essential health coverage could disappear with little warning.

‘I don’t know what else they want from me’

For 22-year-old Ellie Dahlkamp of Fort Wayne, that uncertainty has left her waiting — and even rationing medication she says she can’t safely live without.

Just days before speaking with the Capital Chronicle last month, Dahlkamp had finally begun rebuilding her life. After spending much of the previous two years moving between shelters, motels and friends’ couches, she and her boyfriend had moved into an apartment. She’d started a second job and had recently bought her first dependable car.

Dahlkamp said she first learned something was wrong during a doctor’s appointment, when she was told her Medicaid coverage had ended. She later logged in to FSSA’s online benefits portal and discovered her application had already been denied — despite paperwork she received showing she still had four days remaining before the deadline to submit the requested verification documents.

When she visited her local office, Dahlkamp said she was told the application had been denied before the deadline because staff assumed she couldn’t provide the documents in time. After she submitted them, the application returned to pending status.

Weeks later, she’s still waiting for a decision.

“I did everything they asked me to do,” Dahlkamp said. “I don’t know what else they want from me.”

Without Medicaid, Dahlkamp said she stopped filling prescriptions for migraine medication and antibiotics. She also began rationing Eliquis, the blood thinner she takes to prevent dangerous blood clots, because she couldn’t afford the roughly $350 monthly cost without insurance.

“I can’t be without my Eliquis,” Dahlkamp said. “Blood clots have almost killed me multiple times. It’s literally a matter of life and death for me.”

The lapse in coverage also forced her to postpone a specialized nerve test her neurologist ordered after she began experiencing problems with one of her feet. Without Medicaid, she said, the procedure would cost about $2,000 out of pocket — money she doesn’t have.

“Not everyone is able to get a job that offers insurance, and even some jobs that do offer insurance, it’s really sucky,” Dahlkamp said. “Honestly, I don’t know how I’ve been staying calm. It really is scary because I don’t know what’s going to happen.”

Finding their way through the system

Nearly 170 miles south in Corydon, Tommie Siebert said years of navigating Medicaid have left her family bracing for problems each time their coverage comes up for renewal.

Siebert is disabled. Her husband, Zachary, has sought disability benefits after heart problems forced him to stop working. Their son, Riley, who has autism, ADHD and other disabilities, receives services through a Medicaid waiver.

“It’s been pretty much a roller coaster the whole time we’ve been on it,” Tommie said. “You never know from one renewal to the next what’s going to happen.”

Tommie and Zachary both rely on Medicaid for their own healthcare, while the program also covers Riley’s therapy services.

Zachary additionally depends on Medicaid to continue receiving Suboxone treatment — medication needed for substance use disorder — which he’s been on for nearly a year. After learning his Medicaid coverage had lapsed, Tommie said she feared he might not even be able to see his provider at his next appointment.

“If it’s not fixed, they won’t see him unless we pay out of pocket,” Tommie said days before her husband’s next appointment in mid-July. “We can’t afford that.”

Without treatment, she said, Zachary could quickly go into severe withdrawal. The possibility of losing access to medication — after nearly three years without a relapse — has left her family fearful that months of progress could unravel because of an interruption in coverage.

And with more Medicaid changes on the horizon, Tommie said she worries “every day.”

“It’s always in the back of your mind,” she said. “You just don’t know. And you almost feel powerless.”

In Indianapolis, physical therapist Lori Harter didn’t learn there was a problem with her adult son Elliot’s Medicaid coverage from the state.

She learned from Elliot’s case manager.

That call came as a shock. Until then, Harter had no reason to believe anything was wrong.

“We had no idea that we were no longer qualified,” she said.

What followed became months of trying to figure out how the family had ended up there.

Harter called FSSA. She scheduled dozens of phone appointments. She drove to the local office. She gathered records and repeatedly tried to determine what information the agency still needed.

One appointment, she recalled, ended almost as soon as it began. She arrived at the FSSA office only to be told that no one had actually been assigned to meet with her.

“‘Oh yeah, you have an appointment,'” Harter recalled an employee telling her. “‘But nobody’s assigned to it. Sorry for you.'”

The family’s frustration continued to mount. Eventually, Harter hired an attorney to help navigate the appeals process and work through the questions surrounding Elliot’s eligibility. She estimates the family spent thousands of dollars out of pocket while trying to restore services and coverage.

But the financial costs were only part of it.

The process itself became a second job. Harter said she spent countless hours making phone calls, collecting paperwork, tracking deadlines and trying to understand why answers seemed to change depending on whom she spoke with.

Harter archives her efforts in multiple overflowing binders, folders and notebooks filled with eligibility notices, correspondence, handwritten notes and records accumulated over years of trying to keep Elliot’s services in place.

Behavioral management services funded through Medicaid helped Elliot, who has autism, learn to drive, secure housing and find part-time employment, Harter said. He now works three days a week, lives independently and hopes to eventually work full time. But because of his disability, she said, those milestones still depend on ongoing support.

“He’s done fabulously with supports,” Harter said. “Those services have gotten us where we need to go.”

Without them, she worries years of progress could slip away.

“Just waking up every morning, it’s constantly on my mind. It’s mentally draining. You just don’t know what’s going to happen. … It makes it hard to focus on anything else,” Elliot said. “If I couldn’t have access to (Medicaid-funded resources), I think I’d just give up entirely. Everything I’ve worked on would just go spiraling downwards.”

Getting navigators involved

Such stories have become increasingly familiar to enrollment specialists around Indiana.

Ann McCafferty, who leads the Indiana Rural Health Association’s Healthy Families Alliance initiative, said the organization’s navigators spend much of their time helping families understand renewal notices, respond to verification requests and restore coverage after procedural problems interrupt benefits.

The questions have changed over the last few years, she said.

Instead of simply helping someone enroll in Medicaid, navigators increasingly help families understand what information the state needs to complete renewals and how to submit it correctly.

“Member requirements are just higher,” McCafferty said. “That’s where we come in … to help families address these new requirements.”

Families often receive notices they don’t fully understand, she said. Others move, miss mail or struggle to determine exactly what documentation FSSA is requesting.

McCafferty said navigators frequently spend as much time helping families interpret notices and untangle renewal problems as they do helping people apply for coverage in the first place.

“Sometimes it’s just helping people understand what the notice is asking them to do,” she said. “Once they understand it, we can help them get through the process.”

For many of the families McCafferty works with, the biggest obstacle isn’t whether they qualify for Medicaid, but successfully navigating the renewal process before their coverage is interrupted.

“If they don’t understand what they’re being asked to provide, or they don’t know how to respond, that’s where we step in,” McCafferty said. “Our goal is to help them keep the coverage they’re eligible for.”

Why coverage gets interrupted

Losing Medicaid doesn’t necessarily mean someone no longer qualifies for the program, said Karly Sciortino-Poulter, advocacy network director with The Arc of Indiana.

Increasingly, families are losing coverage because renewals aren’t completed before deadlines or because eligibility questions go unresolved, even when they ultimately remain eligible for benefits.

For Hoosiers with intellectual and developmental disabilities, those interruptions can carry consequences far beyond a doctor’s appointment or prescription refill. Medicaid also pays for the home- and community-based services many families depend on to keep loved ones living at home rather than in institutional settings.

“The biggest thing we are seeing is that people are having their Medicaid terminated, oftentimes because Medicaid says that they sent a request for information and the person never responded — but the issue is really that the person never got the request in the first place,” Sciortino-Poulter said.

Coverage may eventually come back, Sciortino-Poulter said, but families often spend weeks or months living without the stability that coverage is supposed to provide.

For some, medical appointments get postponed, prescriptions go unfilled, therapies are delayed, and providers go unpaid. Families, meanwhile, spend weeks or months trying to restore benefits that many are still eligible for.

Researchers refer to what many Indiana families have experienced over the past three years as Medicaid “churn.” The term describes people who lose coverage for procedural reasons and later reenroll after completing the state’s renewal requirements.

“People are losing their Medicaid but are still eligible, and I think we’re going to see a whole lot more of that,” Sciortino-Poulter said. “Indiana is touting the number of people who are no longer on Medicaid, but it’s not because they weren’t eligible — it’s because of a paperwork issue. And I don’t want anybody losing their health coverage because of a paperwork screw-up.”

“From Medicaid’s perspective, they’re saying, ‘Hey, if we get this all worked out, you know, it’ll be retroactive,’” she continued. “But that doesn’t help if you had to delay medical treatment.”

Susan Jo Thomas, executive director of Covering Kids & Families, emphasized that Indiana’s eligibility system hasn’t kept pace with how most families communicate and manage their lives. 

While banking, bills and everyday services have largely shifted to smartphones and email, she said Medicaid continues to rely heavily on mailed notices and an online benefits portal that many recipients rarely access.

That disconnect, Thomas added, has left many eligible families without coverage — not because they no longer qualify, but because they missed even a single renewal notice or didn’t realize they needed to actively renew after years of continuous pandemic-era coverage.

“What is going wrong is that the system, the eligibility system, did not keep up with society’s use of technology,” she said. “We have failed to get the word out that the state has a way to receive information and eligibility determination resources electronically — it’s just we need to teach people how to use that.”

Living with unknowns

In June, Indianapolis mom Renee Stout received a letter saying her adult daughter’s Medicaid waiver services would end Sept. 22.

She’s appealed the decision, but if the denial stands, the services her daughter has relied on since 2007 could disappear.

Those resources have helped Johanna develop daily living skills, spend time in the community and maintain a routine outside her family’s home. Three days a week, she attends a day program where she sees friends, works with a behavioral counselor and participates in volunteer projects and other activities.

Although Johanna’s disabilities haven’t changed, Stout said losing those services would dramatically alter her daughter’s daily life.

“It’s a social life, for one,” Stout said. “She sees friends. She’s exposed to learning situations. They go out, they do volunteer projects. They go out in the community, just do fun things, do serious things. … She has some trouble getting along with people, so it’s really important that she’s in those settings.”

Johanna will always need some level of assistance, Stout said. Losing the waiver would shift even more of the caregiving onto her parents, who already manage her medications, medical appointments and around-the-clock supervision at home.

“Right now, our home is like an intermediate care facility,” Stout said. “We’re supervising her all day and all night. We manage all of her medical and medications and appointments. … We do everything that would happen in an intermediate care facility. But we’re doing it for free.”

Holliday-Smith has that fear, too.

Although Thomas’ Medicaid coverage has since been restored, the effects of the interruption are still lingering.

Holliday-Smith said her family is still working through retroactive billing issues from doctor’s appointments that occurred while his coverage was suspended, hoping Medicaid will ultimately cover those costs.

The family also delayed purchasing some of the equipment and supplies Thomas needed while they waited for his coverage to be reinstated.

The mom now anticipates other Medicaid interruptions as more program changes take effect. She worries that if future interruptions drag on longer, critical doctor’s appointments, medical procedures and private-duty nursing services could eventually be jeopardized.

“We live stressed now, all the time, because you’re either stressed about his health, just staying on top of his medications, his therapies, his doctor’s appointments,” Holliday-Smith said.

“And now I’m constantly trying to prepare for the next issue that I’m going to have with his Medicaid,” she continued. “People are like, ‘How do you do it?’ You have to. … I just don’t have a choice.”