Medicaid Maze: Advocates and Recipients Brace for End of Continuous Coverage In April, public benefit agencies will see increased caseloads and longer wait times

Leelo en Español aqui.

Jovita Mojica never intended on slowing down. 

The 62-year-old is a chatterbox, known for being independent and active. But life as she knew it came to a halt on March 21 last year. At about 5 a.m. she fell and fractured her arm.  

Still, she went to work for four hours until her boss sent her to the hospital. 

“Y de ahi comenzo la odisea, comenzo una cosa y otra y otra y otra,” Mojica said. (“That kicked off the odyssey. One thing began, then another and another and another.”) 

That hospital visit was the first of many. Doctors later diagnosed her with osteoarthritis and later cancer. 

Over the past year, she’s been in treatment and had surgery to remove the tumor. Medicaid made it possible, she said.  

Before she qualified for Medicaid, Mojica said she waited almost six months for callbacks following doctor appointments. Once the Medicaid approval came, she was able to schedule surgeries, appointments and get access to medications — in half the time.  

Because of her diagnoses and chronic pain, she could no longer work.  

She moved in with her daughter. 

“Yo estaba acostumbrada estar en mi casita, ser independiente — trabajar, mi carrito y todo. Pos ahorita no puedo nada. Batallo para todo, pero aqui estoy toda via,” Mojica said with a laugh. (“I was used to being in my own little house, being independent — working, with my own car and everything. But I can’t do anything. I struggle with it all, but I’m still here.”) 

Mojica is among the estimated 14% of disabled Kansans enrolled in Medicaid. She initially did not qualify because she was younger than 65, but learned she could because of her disability status. 

In Kansas, 25% of Medicaid and Children’s Health Insurance Program (CHIP) recipients were people with disabilities or adults 65 or older.  

This population accounted for more than 60% of state Medicaid expenditures, according to the Kansas Health Institute & Kansas Legislative Research Department report. Enrollment among these populations has been on the rise since 2019 and surged in 2021 during the peak of the COVID-19 pandemic.  

For two years, those enrolled had their applications automatically renewed through Continuous Coverage enrollment that was linked to the public health crisis.  

“Medicaid has served a really important purpose over the course of the pandemic,” said Suzanne Wikle, senior policy analyst at the Center for Law and Social Policy.  

Experts like Wikle say this poses a problem, especially for the 12 states without Medicaid expansion such as Kansas. Without added funding, support and outreach between now and April, eligible people could be at risk of losing coverage.  

“The multiple steps required to successfully renew Medicaid coverage create many touch points where someone could lose coverage despite remaining eligible,” wrote Farah Erzouki, senior policy analyst with the Center on Budget and Policy Priorities. 

In the next several months, advocates say, folks need to verify that all information is up to date to avoid lapses in coverage.  

According to the Center on Budget and Policy Priorities, an estimated 18 million people in the U.S. could lose coverage. Others may be left in insurance limbo. Many of those left in the lurch are more at risk for health issues or health needs, such as the elderly, children and people with disabilities.  

“It’s hard to talk to community when most of them don’t know this is even happening.”

Erica Andrade, Chief Program Director, El Centro Inc.

Why did this happen?  

After declaring a public health emergency in 2020, Congress passed legislation that gave states more funding to curb the termination of Medicaid benefits. That provision would continue for two years.  

But in December, Congress set a deadline to end the Continuous Coverage provision that restarts Medicaid application reviews and terminations as soon as April.  

“States are dealing with staffing shortages, but also dealing with historically high caseloads,” Erzouki said. “State agencies have never had this many people enrolled in Medicaid.”  

A Long Process 

Health navigators at local community centers feel the weight as applications accumulate. 

Neatly stacked piles of paper lined the right side of Ivonne Montanez’s desk. A locked filing cabinet behind her safely stows away papers with sensitive applicant information. Among them is a folder full of Medicaid applications. 

Montanez works as a Health Navigator at El Centro Inc., a local community nonprofit, to help people find the services they need. She’s hands on with each step of the application process. Her place of work is known as a hub for a range of needs, and the needs have only grown in recent months.  

She’s bracing herself for a heavy lift. During the pandemic, their two-person team handled roughly 50 applicants a month. Now, she estimates they see 20 applications per week.  

“Todo mundo va a renovar,” she said. “Va estar largo.” (“Everyone is going to renew,” she said. “It’s going to be a long process.”)  

Enrollment breakdown by race and employment status

Kaiser Family Foundation, Missouri and Kansas Enrollment Data

El Centro’s chief program officer, Erica Andrade, rattled off the why.  

“There’s so many other things happening with a pandemic,” Andrade said. “It’s not like people mark their calendars and say, ‘Oh, yes, I’m going to be getting my renewal notice.’”  

Plus, information hasn’t always been clear. Ever-evolving processes on the federal and state level can affect who is eligible and who is not. But that information doesn’t always reach the general population. 

That’s where community centers like El Centro have stepped in, Andrade said.  

“It’s hard to talk to community when most of them don’t know this is even happening,” she added. “It’s mostly providers that are worried for them at this point.” 

She and the health navigators work closely with new and existing clients to ensure income, address and contact information is in the system and sent to the state Medicaid offices. Their method is to build trust and forge relationships with clients who might be wary of sharing their social security numbers or immigration status.  

El Centro emphasizes personal connection and education.  

Many of the center’s clients do not speak English and are from all over the world. Most recently, they’ve seen an influx of asylees, refugees and immigrants making their way to the Midwest.  

One recent immigration case is an infant with cerebral palsy whose family came from Colombia. Montanez is now searching for a way to insure the young patient for needed treatments. Until then, the family waits. 

Health navigators see people left in limbo due to a range of issues, including citizenship status, or they don’t fit income requirements. Some folks make too much to quality for certain public benefits but too little for others.  

“Todo los dias tenemos un caso especial,” Montanez said. “Eso es un poquito dificil  … no califican para-Medicaid.” (“We have special cases every day. That is a little difficult … they don’t qualify for Medicaid.”) 

Folks who’ve lived in the Kansas City area for a while fall through the cracks too.  

Rural Missouri resident Mark Smothers is currently uninsured and says Medicaid does not work for him.  

He’s a cancer survivor and had Medicaid in the past but ran into issues finding doctors who would accept it. Smothers faced more barriers after being diagnosed with skin cancer.  

At one point, Department of Social Services case managers were able to help folks fill out the 32-plus page application on site, but that program was cut a few years ago.  

That makes finding help difficult.  

“You get sent to a stranger every time you pick up the phone,” he said.  

Andrade agreed and said, “If somebody brand new was applying, the application is … pretty intense.”  

This is why she urges the community and advocates in Kansas City to get ahead of the winddown process.  

Many like Smothers have opted to go without Medicaid this year. 

“I am hoping to stay healthy for a few more years until I get Medicare at 65,” Smothers said.  

The ‘Churning’ Problem 

Analysts, advocates and community members all said the application process is cumbersome.  

So are administrative errors, which are called “administrative churning.” This can be anything from confusion about a new address to a beneficiary error. Churn happens when people are disenrolled, reapply and get approved for benefits all over again. 

It is more likely to happen in the next few months because of the high volume of applications, staff shortages and the amount of time since agencies last spoke with beneficiaries.  

Policy analysts are hyper-focused on this for a few reasons. One is administrative bandwidth and what or who gets lost in the shuffle.  

“It’s a headache for the family and stress for the family. It’s extra paperwork for the state,” Wikle said. “It’s just a no-win situation.” 

Second, data from a recent report show that the unwinding process, which allows for states to begin reviewing applications, will leave people of color by the wayside.  

Policy analyst Erzouki explained communities of color are more likely to lose coverage because of procedural reasons rather than ineligibility. Children, young adults and those in Latino and Black communities were most at risk of losing coverage.

A report by the Office of Health Policy found that 5.3 million children and 4.7 million adults 18-34 years old are predicted to lose Medicaid or CHIP coverage. Around 30% of those are Latino and 15% are Black.

In the past two years, many people have changed jobs, moved or were affected by the pandemic.  

These factors have made it harder for folks, while the same complex system remains. 

“The unwinding process is really going to exacerbate a lot of those inequities. The curtain is really going to be lifted on vulnerable populations,” she said. 

One example is people who require help to fill out the application. 

People like Mejica.  

“Esos aplicaciones son dificiles,” she said. (“These applications are difficult.”) 

It was overwhelming for her and her daughter. She found herself confused with the lengthy list of requirements and the amount of paperwork.  

But she found help through El Centro and in Montanez, who was assigned to her case. Beyond the logistics of filling out the application, people like Montanez can speak her language and understand her experiences. 

They’d visit over coffee and discuss her situation. Montanez said that’s one perk she values at a nonprofit organization. There’s no time limit to help people navigate a dizzying maze just to get health care.  

Her message is to listen to the stories of community members. If they need one-on-one care, she hopes community centers can accommodate those needs. She acknowledges there is a need for more health care navigators who can connect with people to get their life in order.  

It matters. Mejica agrees.  

“Ahorita estoy muy contenta,” she said. (“Right now, I’m really happy.”)  

Vicky Diaz-Camacho covers community affairs for Kansas City PBS.