Texas Tribune
Texas Medicaid gaps can trap disabled Texans in hospitals
by Neelam Bohra, The Texas Tribune – 2024-03-28 05:00:00
SUMMARY: Kaitlyn Cunningham faced a bureaucratic struggle after recovering from five surgeries at Cedar Park Regional Medical Center in Texas. Despite doctors deeming her fit for discharge, she remained hospitalized for an additional month due to insurance denials and care coordination issues. Kaitlyn, who is nonverbal and has cerebral palsy, relies on Medicaid waivers for care, which compounded the complexity of securing continued nursing care for her tracheostomy tube and stomach wound vacuum. Systemic issues, including a nursing shortage and fragmented care programs, often trap Texans like her in hospitals longer than necessary, leading to state budget inefficiencies and taking a heavy toll on families and caregivers. The state eventually pays for delays in discharge, as funds for managed care are tied to state financing. Kathy Cunningham, Kaitlyn's mother, had to navigate a complicated health bureaucracy and coordinate all her daughter's care single-handedly at home in the absence of consistent nursing support.
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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.
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Texas Tribune
Odessa shuts off entire water system due to water line leak
by By Carlos Nogueras Ramos, The Texas Tribune – 2024-05-11 22:36:15
SUMMARY: Odessa, Texas, faced a massive water outage after a leak detected earlier in the week led to a full shutdown of the water supply on Saturday, affecting tens of thousands. Despite attempts to avoid disruptions during the workweek, by Saturday crews had to turn off water completely for repairs. The city, located in the oil-rich Permian Basin, has been challenged by aging infrastructure and increasing demand. A boil-water notice remains in effect post-restoration. City leaders have warned of potential future issues and plan to discuss the fallout, including costs and water lost, at the next council meeting.
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ODESSA — An outage left tens of thousands of residents without running water on Saturday afternoon after crews could not isolate a leak that city leaders say began earlier in the week.
Water also stopped flowing for county residents outside the city limits, a majority of whom rely on Odessa's water plant as well, Mayor Javier Joven said.
The city shut off its entire water supply Saturday at 6:50 p.m. and issued a public notice roughly two hours later. By then, many people on social media said they went the day without running water. The city said it did not announce the outage earlier because some households still had water trickling out of the faucets, albeit on very low pressure.
The outage is the latest in a yearslong race to keep up with the 700 miles of rapidly aging and deteriorating water infrastructure in Odessa. At the center of the Permian Basin's oil patches and one of its fastest-growing cities, Odessa is struggling to adapt to an increasing demand for water and other city services. In 2022, a water line break left the city without water to drink, wash, or flush toilets amid a summer heatwave.
Although city leaders expect to restore water service by midnight, a boil-water notice issued early Saturday will remain in effect as long as 24 hours after crews bring the pumps back online.
Joven expects similar water line breaks in the coming months because of years of neglect. Odessa's utilities director last April warned that if the infrastructure was left unattended, the system could experience “catastrophic failures,” the Odessa American reported.
“More breaks are going to happen,” Joven said Saturday night.
City Manager John Beckmeyer said crews discovered a leaking valve on a main line on Tuesday but decided to wait before fixing the leak to avoid shutting down the water supply during the work week. At the time, officials told the public they believed the leak and the repair would be isolated. In the days that followed, water streamed down busy 42nd Street as maintenance crews attempted to release excess water pressure.
On Saturday, repair crews determined they would have to remove the valve and replace it, forcing them to shut off the water supply at the source.
City leaders said they will address the outage during the upcoming city council meeting on Tuesday, where they plan to confirm the amount of water the city and its residents lost — and how much it cost them.
The water line break caused disruptions throughout the county. Restaurants closed their doors due to the lack of water while others used their reserves. Residents flocked to supermarkets to purchase bottled water to make due.
“It's one of those things where we're always on high alert,” said Alejandro Barrientos, owner of Curb Side Bistro, a local restaurant. Barrientos said he and his staff had been monitoring the water pressure on Friday. When the city issued its first notice on Saturday, the restaurant's staff turned to its backup water reserves.
“You use that and pray you have enough to get through your shift,” he said.
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UT-Austin students host Latinx graduation despite DEI ban
by By Sneha Dey, The Texas Tribune – 2024-05-10 20:36:17
SUMMARY: Liany Serrano Oviedo organized the Latinx graduation at UT Austin, a significant achievement celebrating cultural heritage and identity. However, due to Senate Bill 17 banning diversity, equity, and inclusion programs, public universities cut funding for such events. Students, like Serrano Oviedo, took the initiative, raising $9,000 and securing a venue through community support. These cultural ceremonies recognize the sacrifices of Latino families, with many students being the first in their families to graduate. Despite challenges, including a post-pandemic world and a hostile political landscape, the students ensured the continuation of their cherished traditions, signaling the resilience and determination of their community.
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Liany Serrano Oviedo crouched in her yellow graduation dress, stared at the mirror and carefully blotted her tears with a wipe. It was a rare moment for the 22-year-old University of Texas at Austin senior to be alone and gather her composure.
Serrano Oviedo had been in high-performance mode all Thursday morning, making laps to get everything ready for the Latinx graduation ceremony she planned, sometimes breaking out into a jog to get from one side of the venue to another.
But she had a moment of frailty while talking with a donor who helped sponsor the event. All of her hard work in the last four years — getting her degree and organizing Thursday's ceremony — was for her Venezuelan parents, she said.
“This graduation is a big deal because a big chunk of it is bilingual,” Serrano Orviedo said. “And my mom's English isn't that great. And so this ceremony is one where I know 100% she's understanding everything that's being said.”
For decades, subsets of Texas college graduates — from Latinx to LGBTQ students — have organized intimate events separate from the larger commencement ceremony to celebrate the completion of their degrees in the context of their identities and cultural heritage.
But this is the first year UT-Austin and other Texas public universities cut funding and staff support for such ceremonies in response to Senate Bill 17, a new state law that bans diversity, equity and inclusion programs.
Students across the state like Serrano Oviedo fought tooth and nail to rescue cultural graduations, often taking on the burden of planning and finding funding for the ceremonies. The Latinx graduation ceremony took place days before UT-Austin's commencement, which will be held Saturday.
“It doesn't matter how many obstacles you're going to throw at our community,” said Serrano Oviedo. “We're still going to thrive and we're going to find other ways.”
Students take the lead
For years at UT-Austin, thousands of Latino family members would pack the on-campus Gregory Gymnasium at the end of the school year to see their graduates walk the stage. Some graduates used to wear serape soles made of traditional Mexican cloth. It was the only ceremony where the program was read in English and Spanish.
The now-defunct Multicultural Engagement Center would also pay for surprises for the families, like live Latin bands and food and floral decorations that matched the serapes.
But to comply with SB 17, public universities in Texas have shuttered the multicultural centers that used to organize cultural graduation ceremonies like the Latinx celebration.
Lawmakers who supported the passage of SB 17 last year argued that DEI programs and training were indoctrinating students with left-wing ideology and forced universities to make hires based on their support of diversity efforts rather than on merit and achievement.
The ban did not stop students in the graduating class of 2024 from organizing their own event. Serrano Oviedo and other seniors raised $9,000 with help from Latino leaders across the state. Austin City Council Member José “Chito” Vela secured a local performing arts center for the students to host the ceremony off campus. The League of United Latin American Citizens, the oldest Latino civil rights group in the U.S., stepped in to pay for that venue.
Students graduating this year have already been shaped by a unique set of global and political forces. Many of them graduated high school and entered college in the thick of the pandemic, which means they missed out on a formal ceremony back then. And now they're leaving at a time where pro-Palestinian protests have broken out across campus, including UT, leading to dozens of student arrests.
On Thursday, as UT-Austin history professor Emilio Zamora adjusted the satin hood for one student at the Latinx ceremony, he called the survival of the tradition “a declaration of independence” from public institutions.
“These students are demonstrating they will have the final say,” he said. “It is a demonstration of our resilience. The university has failed us, but we have risen to the occasion with our youth.”
A nod to family
Under the pink and purple lighting of the nearly-full auditorium, parents, grandparents, aunts and uncles clapped, cheered and clapped again.
Cultural ceremonies often elevate themes that are important to those groups of students — like family to the Latinx community — and aren't always part of university-wide graduations.
“Gracias a mi mami y papi”— “Thank you to my mother and father” in Spanish — one students' graduation cap read. Another one read, “Sus sacrificios y apoyo son la razón por la cual lo logre”: “Your sacrifices and support are the reason I made it.”
For some students and faculty, celebrating the accomplishments of Latinx students is a critical recognition of the hard road they journeyed on to get their degree. Latino college students are often the first in their family to get a college degree. That makes cultural ceremonies, which acknowledge the generational sacrifices and obstacles that families have overcome, all the more significant.
They're also an important gesture if Texas universities want to continue to recruit, retain and graduate Latino students, supporters say.
Despite being designated a Hispanic-serving institution, UT-Austin's enrollment still lags behind in representing the state's makeup. Hispanic residents represent the biggest share of Texas' population — 40% — but only about 25% of students at UT-Austin are Hispanic.
“The cornerstone of a successful Texas is to be doing all of [these cultural events]. In essence, it's going to affect academics and how people of color perceive the state,” said Katherine Ospina, a UT senior who raised the funds to pay for the ceremony. “Texas is an extremely diverse state and we need to capitalize on that diversity.”
Domingo Garcia, the president of LULAC, the Latino civil rights group that covered the cost of the venue, said he worked two jobs to be the first in his family to graduate from college. Preserving cultural graduations in the face of the DEI ban sends a signal that Latino culture has a place in the state, Garcia said.
“People don't understand the sacrifices that parents, many of them working class, have made to have that son or daughter attend UT and what they've gone through to get to that place,” said Garcia, who is a former state representative. “To not be allowed to celebrate your culture, to celebrate who you're from and what your family's from, it's really immoral.”
Ospina said she could not let the class of 2024 be “lost in the ether” of a post-SB 17 reality.
On Thursday, as the last few family members filtered out of the venue with their graduates at the end of the ceremony, Serrano Oviedo balanced a stack of leftover orange cords and a plastic H-E-B bag.
Serrano Oviedo said she is trying to secure funding from the city of Austin for future ceremonies. A new round of students will have to step in to do the work of organizing, but she's hopeful the tradition will continue.
“Everything the state Legislature and university threw our way, we overcame,” Serrano Oviedo said.
Ikram Mohamed contributed to this report.
The Texas Tribune partners with Open Campus on higher education coverage.
Disclosure: H-E-B and University of Texas at Austin have been financial supporters 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.
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UT-Austin lecturer arrested at protest, then fired
by By Annie Xia, The Texas Tribune – 2024-05-10 17:46:04
SUMMARY: Richard Heyman, a UT Austin lecturer with 18 years of tenure, was arrested and subsequently fired over his involvement in a pro-Palestinian campus protest. Charged with a Class B misdemeanor for allegedly interfering with police duties, his actions during the demonstration are under dispute; his lawyer contends the physical altercation was initiated by an officer. Heyman's dismissal has amplified concerns among Texas faculty about recent legislation affecting academic freedoms and job security. Texas legislators have passed laws targeting diversity initiatives and altering tenure processes, resulting in job cuts and increased oversight of university faculty.
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A University of Texas at Austin lecturer was arrested and fired this week in connection with his participation in a pro-Palestinian demonstration on campus, raising fresh concerns among faculty members and free speech advocates about academic protections in the state.
Richard Heyman, who has taught at UT for 18 years in the College of Liberal Arts, was arrested Wednesday by the Texas Department of Public Safety and charged with interfering with public duties, a Class B misdemeanor. The charge stems from Heyman's participation in an April 29 pro-Palestinian demonstration in which authorities arrested around 80 protesters who had set up an encampment on campus.
The university fired Heyman on Thursday through an email, according to his lawyer, Gerry Morris. Heyman was scheduled to teach three classes during the upcoming fall semester.
According to Heyman's arrest affidavit, DPS troopers accused him of yelling expletives at law enforcement during the protest, pulling away a trooper's bike and making a motion with a water bottle “as if he were going to swing it and hit” a trooper.
Citing three video recordings of Heyman's actions, Morris disagreed with the affidavit's characterization of his client as physically disruptive.
Morris said the officer initiated physical contact and pushed Heyman, which caused Heyman to grab onto the bike's handlebar for balance. Morris said he plans to ask the Travis County Attorney's office to dismiss the case.
“This is a politically charged atmosphere that this occurred in,” Morris said. “I think in a normal atmosphere, the prosecutor would look at this, drop it pretty quickly. But I'm not sure that it's going to move very quickly given what we're in the middle of.”
Heyman's firing comes amid rising concern among Texas faculty groups that state legislators have passed laws that have led to increased scrutiny and insecurity regarding their jobs. Anne Lewis, an executive board member of the Texas State Employees Union, linked Heyman's firing to what she said are broader moves by the state to restrict academic freedom and First Amendment rights.
“I think it is an attack on higher education and its core values, and Richard is just one of many that is getting caught up in this attack,” Lewis said. “He's the worst so far.”
Last year Texas lawmakers passed Senate Bill 17, which banned diversity, equity and inclusion offices at Texas universities, and Senate Bill 18, which set out to terminate tenure at state universities but ended up only requiring schools to provide clear guidelines for how to obtain and keep tenure. Complying with SB 17 resulted in firings at universities across the state, with UT-Austin laying off dozens of employees earlier this year.
The state Legislature's Higher Education Committee will likely monitor the implementation of both laws and consider regulating faculty senates in the next legislative session, according to Lt. Gov. Dan Patrick's agenda for lawmakers during the interim period before the next legislative session. Faculty senates represent faculty members in open meetings to make recommendations on a wide variety of topics such as undergraduate degree programs and student services.
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