Sign up for The Brief, The Texas Tribune’s daily newsletter that keeps readers up to speed on the most essential Texas news.

After surviving five surgeries and near organ failure, Kaitlyn Cunningham just wanted to go home. Instead, she would face another trial — fighting her way out of the hospital.

Cunningham would spend an entire additional month confined to the second floor of Cedar Park Regional Medical Center, snared in a tangle of insurance denials, care needs and coverage confusion.

“That’s our whole world, from there to here,” her mother, Kathy Cunningham, said while pushing her 33-year-old daughter’s wheelchair down the hallway. Kaitlyn Cunningham, who has cerebral palsy and is nonverbal, enjoyed sitting in front of the windows next to the hospital’s elevators; sometimes, turkey vultures would strut across the roof.

But the mother and daughter couldn’t just leave. Doctors agreed that Kaitlyn Cunningham was healthy enough to discharge from the main hospital after already being there for one month, but she needed continued nursing care to fully recover: to maintain the tracheostomy tube in her neck and to use the wound vacuum that helped close her stomach.

Trying to secure that care, though, would send the Cunninghams into a dizzying circle of siloed programs — an experience not uncommon for medically complex Texans, especially those who are on Medicaid waivers, specialized programs that offer services like caregiving and therapies.

This web of insurance, doctors, nurses, and Medicaid program directors, known as “care coordination,” can be flawed and difficult, leading some to spend more time in the hospital than necessary, said Marjorie Costello, chief administrative officer for Disability Services of the Southwest. Her organization is one of multiple agencies the state contracts with to provide these specialized services to disabled Texans.

A wide range of systemic flaws can trap these Texans in the hospital. These include the nursing shortage, the wide gap between what specialty programs cover, and a lack of clear communication and organization between case managers, state services directors, and insurance..

“There's a severe breakdown in care coordination across our long-term care programs,” Costello said.

Extended hospital stays can have a number of negative impacts: for one, they cost the state more money. They cause waiver programs to lose out on funds budgeted for them. But, they also can cause Texans with disabilities to lose caregivers in the midst of a shortage.

And they take a mental toll on everyone involved.

“The hardest thing was when I really thought she wasn’t going to make it another day, when her kidneys started to fail,” Kathy Cunningham, 64, said. “I didn't sleep that night, I cried the whole night long.”

“Then, when she came out of it and started bouncing back, it became the quest to get out of here,” she added of their two-month total stay. “That's been the battle, now.”

A circle of confusion

Kaitlyn Cunningham enjoyed her normal life — she received physical and speech therapies through her Medicaid program, so she could move her muscles and use a communication device. She would go shopping with caregivers or attend movies as part of her recreational therapy. And she “understands a lot more than she can communicate,” her mother said.

Her Medicaid waiver program, Community Living Assistance and Support Services, or CLASS, made those therapies and access to caregivers possible. But she hadn’t used nursing services offered through CLASS before.

This became one of the first issues they faced, Kathy Cunningham said: because a person can’t be on more than one waiver program at a time, niche situations like her daughter’s can fall through the cracks. She said she had to figure that out herself, as multiple case managers she spoke to didn’t have enough information about waiver programs as a whole.

The type of nursing care Kaitlyn Cunningham needed would be more accessible through another program: Home and Community-based Services. But then she would have to leave behind the CLASS program, which she waited years to receive. Once she recovered, she wouldn’t be able to immediately switch back to CLASS again.

It's hard to maneuver between the gaps in waiver program services when people start off on a program geared toward less intense forms of care but then have medical issues, which increase their needs, Garth Corbett, an attorney at Disability Rights Texas, said.

It’s a “problem across waiver programs,” Corbett said, although CLASS, as an example, is a more difficult program to get medical services through.

When their health and needs change, Texans can “submit a revised plan of care,” Jennifer Ruffcorn, spokesperson for Texas Health and Human Services Commission, said in a statement.

Looking for care

Going through this process take time, and the Cunninghams felt it. At first, doctors had recommended Kaitlyn Cunningham go to a specialty hospital for longer term acute care instead. Her Medicaid coverage denied it.

As her mother sought a different path to care, Kaitlyn Cunningham developed bed sores. Cunningham, who also has cortical vision impairment, barely used her communication device because she was overwhelmed and couldn’t move.

To get nursing through CLASS, her mother would need to get state approval to add medical care and then find a registered nurse that was certified in the state of Texas and would be willing to work for a wage of $38.20 per hour.

This introduced Kathy Cunningham to the second, larger problem in the system: the nursing shortage. She searched for weeks and finally found one person who fit all the qualifications to interview. And even then, he might not want to work with her daughter, Kathy Cunningham said.

Nursing shortages have affected health care settings across the country since the COVID-19 pandemic hit, but in Texas, these shortages can be felt across caregiving and attendants for disabled Texans as well.

Part of the problem is that wages for nurses, attendants and caregivers have stagnated. Attempts to increase caregiver pay have backfired. This week, several nonprofits and private organizations even launched a coalition called Time to Care, to persuade the Legislature to raise wages for direct support professionals that care for Texans with intellectual or developmental disabilities. Nurses “can make a lot more working part-time in a hospital than they can through a waiver program,” Corbett said.

“There has to be more done, to help people who are getting services to remain at home. This idea of having to be trapped either in a hospital or a nursing facility — it’s just awful,” Corbett said.

Wasting state funds

At the end of the day, the state takes on the costs for these delays in discharge.

Though managed care organizations foot the immediate bill for hospital care, the state funds these organizations — and when they may report higher costs of care, the state may increase how much it pays them.

Similar situations have happened with other organizations, such as nursing homes, Costello, of Disability Services of the Southwest, said.

“No matter which way you look at it, the state ends up paying for it,” Costello said.

When people on waiver programs are in the hospital, their access to the program’s services are paused, which means some of the money the state has budgeted for their services goes unused. Because medically complex Texans are likely to be in the hospital more often, this affects a chunk of the budget set aside for Medicaid waiver programs.

But that leftover money doesn’t follow everyone in these programs into the next year. It’s “typically not used for waivers in the next fiscal year,” Ruffcorn, of Texas HHSC, said in a statement. Instead, it "is returned to the fund from which it was appropriated, in this case, the general revenue fund."

In programs that have exponentially growing waitlists — as of March 26, more than 156,000 Texans are waiting for a Medicaid waiver program’s services — not seeing all of that money realized can be “frustrating,” Kathy Cunningham said.

But it still amounts to a loss for the state’s funds as a whole.

“The money they save on the attendants and therapy and even nursing portion of this, if somebody's in the hospital, the money HHSC saves — it's nothing,” Costello said.

Going home

Kathy Cunningham now sets an alarm for every two hours throughout the night, never sleeping for more than three hours at a time, to make sure her daughter is breathing and doesn’t need anything.

“I just am so afraid, the one time I don't hear it, will be the one time it's really important,” Kathy Cunningham said.

Now that they’re home, she’s taken over all other medical care for her daughter because they still don’t have a consistent nurse. They had worked out a unique deal to finally leave the hospital: their insurance would cover a contracted nurse to visit twice a week to help care for Kaitlyn Cunningham’s wound until they found someone through CLASS.

She said when she first returned home, she had a letter waiting for her that said her Medicaid eligibility was “under review.” She said it was just “another thing to worry about.”

Kathy Cunningham doesn’t have any other family in the state who can help and Kaitlyn Cunningham’s father is not in their lives. Sometimes, people from church come over so she can take a shower or run to the grocery store.

“I feel like no matter how hard I try, there's always something else,” Kathy Cunningham said. “It's just such a stone wall and I get really exasperated. If she didn't have an open wound in her belly, I would just go get a job and try to figure out how to do this myself. I just don't know what to do to make things easier anymore.”

She said people who have insurance should be able to actually rely on it without having to jump and roll through an obstacle course of bureaucracy.

“To put all of the burden on the caregiver, the only caregiver a person has, to also try and do all of that?” she said. “Something's got to change.”

Neelam Bohra is a 2023-24 New York Times disability reporting fellow, based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.

Disclosure: New York Times has been a financial supporter of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.

We can’t wait to welcome you to downtown Austin Sept. 5-7 for the 2024 Texas Tribune Festival! Join us at Texas’ breakout politics and policy event as we dig into the 2024 elections, state and national politics, the state of democracy, and so much more. When tickets go on sale this spring, Tribune members will save big. Donate to join or renew today.

This article originally appeared in The Texas Tribune at https://www.texastribune.org/2024/03/28/texas-medicaid-disability-hospital/.

The Texas Tribune is a member-supported, nonpartisan newsroom informing and engaging Texans on state politics and policy. Learn more at texastribune.org.