: Eight steps Texas can take to fix its managed-care mess

When a giant health care company wanted to save money, a foster baby paid the price

He was born three months too early, unable to breathe or eat on his own. But after a year of intense care in a foster home in Mesquite, D’ashon Morris had grown into a bright-eyed toddler who loved to cuddle and crawl. He was still very sick. But he was giggling, babbling, grabbing for toys. Doctors described him as “happy and playful” and told his foster mother he would be healthy by the time he went to kindergarten. That was before a giant health care company decided he didn’t need round-the-clock nursing care to keep him from suffocating. The decision would save Superior HealthPlan as much as $500 a day — and cost D’ashon everything. “He would have lived a perfectly good life,” says Linda Badawo, the foster mother who adopted D’ashon. “If only they were paying attention to what I was saying.” Texas pays Superior and other companies billions of dollars every year to arrange care for tens of thousands of kids like D’ashon: foster children, disabled children, chronically sick children. The companies promise to improve the lives of these kids, as well as adults with severe medical conditions and disabilities. But under a system set up by the state, every dollar the companies don’t spend on health care they can use instead to hire high-powered lobbyists, pay millions in executive bonuses, and buy other businesses. The state knows some companies are skimping on care to make profits but has failed to stop it. The Dallas Morning News spent a year investigating the way Texas treats fragile and ailing residents who rely on Medicaid, the government insurance program for the poor and disabled. We reviewed more than 70,000 pages of documents, including patient medical records and material that state officials and the companies tried to keep secret. We crunched financial and insurance-industry data and talked to hundreds of families, doctors and policy experts. We found that state officials are protecting a booming multibillion-dollar industry while the most vulnerable Texans wait in vain for wheelchairs, psychiatric drugs and doctors’ appointments. That system has failed countless disabled adults and sick children who can’t advocate for themselves. Because of the recent resignations of its top officials, the state health commission said it could not make anyone available to discuss problems with corporate management of Medicaid. In a lengthy statement, it acknowledged many of the problems we found. In response to our findings, the commission has asked the Legislature for more money to implement “a blueprint for protecting our fragile children in the Medicaid program and children in foster care,” including hiring 50 more people to help check on patients who might not be receiving adequate care. The managed-care industry believes the program is “a model for providing patients the care they need,” Jamie Dudensing, chief executive of the Texas Association of Health Plans, said in a statement. Superior said it follows state guidelines. “We are fully committed to providing high quality care to all our members,” a spokeswoman said. “Our high consumer survey ratings, high quality scores and the growing number of consumers choosing our plan demonstrates the success we have had in delivering upon this commitment.” Superior, citing privacy laws, and the state declined to comment directly on the case of D’ashon Morris.


A very sick baby On May 2, 2015, D’ashon and his twin sister, D’asia, were born at just 25 weeks to an unknown father and a 31-year-old mother who used cocaine and marijuana during her pregnancy, his medical records show. The twins had severe birth defects. D’ashon tested positive for drugs and weighed less than 2 pounds at birth. Child Protective Services soon took custody of the babies. When they were released from neonatal intensive care at Medical City Dallas Hospital, child welfare workers placed them in Badawo’s foster home, a two-story brick house she had opened just for children with complex medical needs. Badawo filled a small bedroom with two cribs, stuffed animals, and toys that beeped and jingled and lit up, hoping they would help the babies develop their sight and hearing. D’ashon’s favorite turned out to be something simple: a rattle made of bright plastic keys. Nurses worked in shifts to help Badawo, herself a pediatric nurse originally from Nigeria, keep the children alive and well. D’ashon Morris rests in his crib as he receives breakfast through a gastronomy tube. D’ashon was the healthier of the two, but his diagnoses were extreme: bleeding in the brain, internal hemorrhaging, chronic lung disease, developmental delays. He needed a tube to pump nutrients into his stomach, and constant monitoring because his blood pressure or blood sugar would plummet. But breathing was his greatest hurdle. For his first five months of life, he depended on a ventilator, which pushed oxygen into his lungs through a trach — a tracheostomy tube — threaded through a hole in his throat. Eventually he learned to breathe without the ventilator, but the trach remained to keep his windpipe open. Trachs require constant upkeep. D’ashon couldn’t cough like normal babies, and if mucus built up in his lungs, he could contract pneumonia or choke to death. So, as often as seven times an hour, nurses had to suction out his airway. Every 15 minutes, they checked his oxygen levels, his blood pressure and the feeding tube that plugged into his stomach through his belly. The routine was working. D’ashon bounced and swayed to the sounds of Barney & Friends. When Badawo brought him downstairs to join in family gatherings, he giggled and clapped. His favorite word was “Bye!” Badawo fell in love with the twins — and they loved her back, lighting up whenever she was in the room, a caseworker wrote. In June 2016, she notified the child protection agency that she wanted to adopt D’ashon. Despite her connection to the babies, though, she had little say over their lives. A new way to care for the sickest STAR Health A managed-care program for foster children, run by Superior HealthPlan. Half of foster children have special health care needs, and some of them are "medically fragile" and need services like in-home nursing. From the moment D’ashon became a foster kid, Superior controlled his health care. Under a contract with Texas, the company manages care for all of the state’s 30,000 foster children, more than half of whom have special health needs. A subsidiary of Missouri-based Centene Corp., Superior has become the biggest player in Texas’ move to put its sickest citizens into what’s known as “managed care.” In the past, state officials ran the Medicaid program, processing millions of insurance claims and paying doctors and nurses directly. But that system grew increasingly expensive, eating up a larger chunk of the state budget each year. It was plagued by fraud, and it didn’t guarantee good medical outcomes. People with uncontrolled asthma and diabetes, for example, often ended up in emergency rooms. Under managed care, companies promise to cut the state’s costs while improving patients’ health by coordinating doctors and specialists and emphasizing preventive care. Term: Medically necessary care Companies decide which drugs, services and exams must be provided for people to either get better or maintain their level of health. Using criteria they set, and broad guidelines set by the state, companies often deny claims they decide are not needed. In Texas, children are legally entitled to all necessary care. Texas sets some very broad standards — children are supposed to get all “medically necessary” treatment, for example. And its officials are supposed to ensure that corporate profits don’t climb at the expense of children like D’ashon. In exchange for a flat monthly payment per person, the companies write the rules for medical care. They choose the doctors, decide how much to pay and pick which treatments to cover. At first, managed-care programs focused mainly on healthy Texans, especially children who needed routine care like vaccinations. But state lawmakers have expanded managed care to cover the very sick and disabled, as well as foster kids. Many of these new patients need a lot of expensive medical services — and by definition are past the time for basic preventive care.

Linda Badawo, D’ashon’s adoptive mother, brushes his teeth. D’ashon is prone to illness if Badawo doesn’t maintain his oral hygiene.

A dangerous habit Months before his first birthday, D’ashon developed a dangerous new habit: pulling out his trach. Over and over. Three times within one 12-hour nursing shift. Twice within 15 minutes during another shift. He did this any chance he got, even in his sleep, according to months of nurses’ logs. Each time he tugged out the trach, the hole in his throat would collapse and he’d begin to suffocate, risking brain damage or death. The nurse on duty would intervene, reinserting the tube and, often, forcing air back into his lungs. The danger posed by D’ashon’s new habit was copiously documented in his medical records, child-welfare workers’ notes and in letters his doctors and nurses wrote to Superior. They recommended that instead of having a nurse care for him one-on-one 12 hours a day, he should have that nursing round-the-clock. Instead, Superior sent Badawo a letter saying round-the-clock care was not medically necessary. In fact, the company said it planned to make D’ashon start sharing a nurse with his very sick sister. D’ashon reaches for a dangling bell toy during a visual stimulation therapy session. Frightened by the idea that one nurse would have to juggle care for D’ashon and D’asia, Badawo fought Superior’s decision. She appealed first to Superior itself, because Texas requires parents to exhaust challenges with the companies before contacting the state. One of D’ashon’s nurses submitted medical records to Superior showing the boy was in danger. D’ashon “frequently pulls his trach out and requires immediate skilled nursing intervention to prevent further developmental harm from lack of oxygenation, if not death,” the nurse wrote in a letter to the company. Less than three weeks later, at the end of May 2016, Superior did what state records show it almost always does: It refused to change its decision. The baby’s nurses were shocked, Badawo says. The two-patients-to-one-nurse policy put them at risk of losing their licenses because it created a gut-wrenching dilemma: If D’ashon and D’asia both go into a crisis at the same time, which baby should they let die? “They all quit,” Badawo says. Pregnant with her third child, Badawo began to feel helpless and exhausted. She stopped working as a nurse so she could fill gaps in the twins’ care — even though state law prohibits companies from requiring parents to perform at-home nursing. She called again and pleaded with Superior. She says the company told her that if she couldn’t manage, she should have D’ashon moved to a different foster family. What is a 2:1 ratio? When it comes to health care for the very sick and disabled, one of the biggest expenses is one-on-one home nursing. Although it’s cheaper than keeping patients in the hospital, this kind of nursing can cost as much as $50 an hour — or nearly a half-million dollars a year for patients receiving 24/7 care. In 2016, Superior HealthPlan found a way to cut those costs across its entire health program for foster children. It decided that in almost all cases, one nurse could take care of two sick kids in the same home. Under state rules, the health care company had the option to do this as long as it didn’t cause potential problems for the patients — meaning, the double-nursing wasn’t “contraindicated” because of the nature or severity of the kids’ medical issues. But it made the policy apply no matter the circumstances, simply by removing the word “contraindication” from its policies. Then, using this so-called 2:1 ratio, the company paired children ages 5 months to 21 years (some disabled children stay in foster care until their 22nd birthday). This change in the level of what’s known as private-duty nursing, or PDN, sometimes took months of planning by Superior staff, medical records show. According to an internal report created by state nurses, that policy put kids in immediate danger because often one nurse couldn’t watch over two children, who could have a health crisis at any time. Yet, records show Superior did this to a 4-year-old named Amira who was shaken so hard as a baby that she was left blinded and unable to breathe on her own. And an 11-month-old named Zoey, born at 27 weeks with severe birth defects and brain disorders. And a 3-year-old with cerebral palsy named Tyler who needs constant attention because he kept pulling out his breathing tube. The News identified at least 16 cases, though there are likely more. The denials caused concerns across the state. D’ashon Morris was one of these children. The 2:1 ratio exemplifies the way companies like Superior can make broad changes that save them money and deny or delay crucial services to patients.

A nurse practitioner checks D’ashon’s vitals during a checkup as adoptive mother Linda Badawo comforts him.

‘Risk of death’ By July, D’ashon’s doctors were worried. The baby “is requiring tracheal suctioning on average 2-7 times per hour,” wrote Dr. Heidi Roman with the Rees-Jones clinic for foster kids at Children’s Health in Dallas. Going back to a 1:1 nurse ratio, and increasing the care to 24 hours a day, was a matter of life or death, the doctor wrote. Several times that month, nurses couldn’t keep their fear and exasperation from seeping into their medical notes. July 11, 2016: D’ashon pulled out his trach. The nurse stopped his sister’s lung treatment and changed his tube. “Very stressful doing so many things at a time for both.” July, 13, 2016: “... trach suctioned while doing his sister’s breathing treatments” and stopping D’ashon “from pulling his tubes every second.” July 20, 2016: “... transferring patient’s sister to her crib and noted patient struggling to breathe. Noted patient pull out his trach.” All the notes and letters were sent to Superior with urgent requests for a nurse to focus on him alone. But on July 22, without having seen D’ashon, Superior again refused to pay for full-time nursing for him. Badawo’s next step was to seek help from the Texas Health and Human Services Commission, the state agency that oversees Medicaid. She asked for what’s called a “fair hearing,” in which parents have a chance to argue their case before a commission employee. The hearing officer, who is neither a lawyer nor a doctor, makes a decision based on one question: Did Superior follow the policy it wrote for itself? After fostering both children, Linda Badawo adopted twins D’ashon (above) and D’asia last summer. Badawo couldn’t convince Superior HealthPlan that D’ashon needed full-time nursing care to keep him from suffocating and risking brain damage by removing his trach. ‘They wouldn’t listen’ T he state missed deadlines and didn’t hear Badawo’s case until August 2016. From her living room, Badawo dialed in, thinking she was prepared. She had the nurses’ notes, the doctor’s letter, and information on D’ashon’s recent hospitalization for low blood sugar. But Badawo didn’t realize she was about to face off against Superior’s high-powered medical expert: a lung specialist named William Brendle Glomb. Three years earlier, Glomb had been the top medical official at the state health commission, where he was involved in policy decisions as the agency was turning billions of dollars of business over to Superior and other companies. The month he left that job, he took a senior position at Superior, where he often defends the company against appeals. Dr. William Brendle Glomb, senior medical director at Superior HealthPlan. (Courtesy of attorney Casey Low) At the hearing on Aug. 2, Glomb dismissed all the documents arguing that D’ashon needed more nursing care. “None of the letters of medical necessity, per se, were indeed letters of medical necessity,” Glomb said. “They weren't particularly helpful.” He took control of the hearing, suggesting a separate call, without the state but including one of D’ashon’s doctors, in a couple of days to discuss the nursing situation. “I want to make sure that D’ashon has all the nursing that he and his sister need,” Glomb said, according to a recording of that call. “Obviously, we disagree that that's 24/7, 365 for both of them but maybe we can come up with something together that is going to be a compromise.” Instead, on a call the next day, Superior proposed a different solution: tying D’ashon’s hands with a “soft splint” so he couldn’t pull out his trach, state records show. Badawo says she was horrified — state regulations bar using physical restraints on foster children in most situations. She refused. “I was crying,” Badawo says. “I was screaming at the top of my voice, and they wouldn’t listen.”

D’ashon is subjected to light and visual stimuli during a therapy session at his home in Mesquite.

In on a private call The next day, Dr. Glomb held what was supposed to be a private conference call with his Superior colleagues about D’ashon. Inadvertently, the company had given the conference code to Badawo and Rachelle Seaton of Care Pro Home Health, the firm that supplied nurses for the twins. Separately, the two women called in, unbeknownst to Superior, according to a lawsuit the company would later file against Care Pro. What they heard, Badawo says, was “how they’re going to convince my doctor to not give him 24/7 nursing care.” Seaton recounted the phone call in an email to other nursing groups, asking if they had faced similar pressure to have one nurse handle two sick kids. “During their conversation, they discussed how home health agencies are idiots …,” the registered nurse wrote. Glomb “recommended to his other Superior staff that they start communicating with the Dr.’s and try to convince the Dr.’s that the children do not need the hours that are requested,” the email reads. That was a serious accusation. Medicaid doesn’t allow health care companies to take away nursing hours or therapy without a formal medical assessment and a specific reason, such as marked improvement in health, that makes that care no longer necessary. Glomb did not respond to a request for comment. Superior’s former CEO, Tom Wise, its public relations staff and its parent company, Centene Corp., did not return calls. Jane Hardey of Marathon Strategies, a New York crisis communications firm hired by Superior, said the company reduced the nursing ratio after an investigation into home nursing showed the “high use of nurses at some foster homes, with more than five children with individual round the clock care that was not medically necessary.” Superior dropped its cutback based on the 2:1 ratio but continued to limit D’ashon’s nursing hours to 17 hours a day, still a significant savings for the company. Seaton's email ended up on the desk of Gary Jessee, the state’s Medicaid director at the time. She sent a follow-up email on Aug. 22, 2016, in which she told Jessee about the entire ordeal. Complaining about Superior, Seaton wrote, “I have never seen such an agency be so unethical.” Companies like Superior have wide latitude to drive down payments to medical providers like Seaton’s firm or drop them altogether. Shortly after the email, Superior stopped paying Seaton’s firm. On Sept. 20, Superior told the firm it was terminating its contract. For Care Pro, it meant a substantial loss of business. A Care Pro director wrote to state officials that Superior’s termination was “a clear case of retaliation” because the firm had raised concerns about D’ashon’s nursing. Superior’s spokeswoman said Care Pro had been warned it was being terminated for a contract violation, but ultimately the firm wasn’t kicked out of the network. By this time, Badawo felt defeated — and worried because she was booked on a long-planned trip to visit relatives in Africa.


‘The baby is coding’ When Badawo left for Nigeria, Child Protective Services temporarily placed D’ashon in a foster home in Forney, a common arrangement called respite care. D'asia stayed in a different home. Ogechi Okusagah, a nurse who worked in the foster home that took in D’ashon, remembers the boy was “laughing and happy.” He wasn’t her patient; she was there for a 2-year-old with a neurological disorder. She hadn’t been trained to care for patients with trachs. On the morning of Oct. 5, Okusagah arrived before D’ashon’s nurse, who didn’t come on duty until about 7. Simeon Jatto, the foster father, had already placed D’ashon in a baby walker so he could receive a breathing treatment, according to the police report and state records. The baby’s pulse and oxygen level were normal, Jatto told police. At some point during this treatment, Jatto, who declined to comment, went upstairs to the bathroom and left D’ashon in the room with Okusagah. “I was busy with the other baby, when I heard the sound,” she told The News. She looked around. D’ashon was facing the wall. She stopped what she was doing and went over to him. D’ashon had dislodged his trach. He was choking. She yelled for the foster parents to come help. They rushed in. D’ashon’s face was gray. Foam was coming out of his mouth. Jatto’s wife pulled out the trach tube and replaced it with a new one, according to the police report. She began forcing air into his lungs. Okusagah called 9-1-1 just after 7 a.m. “The baby is coding!” she yelled. The dispatcher sent units to the house. “Oh, Jesus Christ,” the nurse said in the recorded call. Medical equipment beeped in the background, indicating D’ashon’s heart had stopped and he had no pulse. In the background, a voice said, “One. Two. Three. Four. Five. Six …” The dispatcher asked, “Ma’am, are y’all doing CPR?” “Sixteen. Seventeen. Eighteen. Nineteen. Twenty …” Seven minutes had gone by. Eight minutes. Nine. Sirens howled in the background. The nurse moaned. “It’s taking too long to get here.”

D’ashon received one of his three daily breathing treatments last August at home. Along with his twin sister, the boy was born three months premature to an unknown father and a mother who used cocaine and marijuana during her pregnancy.

Still waiting for answers Nurses and medics performed CPR for 40 minutes. When they reached Children’s Hospital in Dallas, the baby still had no pulse, his medical records show. He was revived in the hospital — but not fully saved. Badawo got the news via text, she says. She took the next flight from Nigeria to Texas, landing in Houston, and drove back to Dallas. D’ashon had gone too long without oxygen in his brain, doctors told her. He’s brain dead; he’ll be tethered to machines the rest of his life, needing a dozen drugs to keep him stable. “I wasn't shocked,” Badawo says. “This is what I was screaming about.” The hospital discharged D’ashon on Oct. 21, 2016, more than two weeks after he stopped breathing. Finally, Superior agreed to give him round-the-clock nursing. D’ashon, who has just turned 3, needs it even more now that he has seizures half a dozen times a day. “He died to get the hours,” Badawo says. Seaton, the director of the nursing firm, wrote once again to the state, in a seven-page letter detailing these events to Charles Smith, a former aide to Gov. Greg Abbott who then oversaw the state health commission. “The incident is a direct result of the failed policies and callous actions of a managed care organization contracted by the State of Texas to provide health care services to Texas Foster Children.” “I have never seen a more egregious disregard for the well-being of a child in need of special care.” Two months after D’ashon left the hospital, the state concluded that Superior’s 2:1 nursing ratio violated state and federal law — and endangered kids. Superior put the policy on hold after the state asked to review it. What’s more, nurses inside the health department concluded Superior had inappropriately denied D’ashon’s nursing and was responsible for his brain damage. They recommended the state fine the company $345,000, according to internal records obtained by The News. But the company received no sanctions or fines. A spokeswoman for the state said she could not comment on that. Superior’s spokeswoman said the company was not notified of such penalties. At the beginning of 2017, Texas handed Superior tens of thousands more medically fragile kids to care for. That new contract is worth more than $440 million a year. Superior had sued Care Pro to prevent the firm from discussing the phone call Seaton and Badawo had overheard; last May, lawyers for both sides signed a settlement that barred the nursing firm from talking about the matter. Citing that agreement, Seaton declined to comment. Badawo adopted D’ashon and his sister last summer. Child-abuse investigators looked into D’ashon’s catastrophic injury and determined none of the caregivers was to blame, investigative records show. Badawo has repeatedly contacted the state health commission, asking what is being done to hold Superior accountable, but she’s gotten no answers. “If only they could say, ‘Linda we messed up,’” Badawo says, holding back tears. “‘We messed up, and we’re going to fix it.’ “It would heal my heart.” The News began this investigation in January 2017, the month we obtained Seaton’s letter describing events that left an unnamed foster child in “a persistent vegetative state.” We asked the state about the case. Soon after, late on a Friday night, the health commission’s top communications officer, Enrique Marquez, sent a short text-message response: “Re: trach tube,” Marquez wrote to The News, he couldn’t give any details, citing federal health privacy laws. “But there is no ‘there’ there.” Last September, he was promoted from spokesman to deputy executive commissioner in charge of Medicaid managed care. CORRECTION: 3:18 p.m., June 6, 2018. An earlier version of this story incorrectly identified Tom Wise as CEO of Superior HealthPlan. He is the former CEO; today he is regional senior vice president of health plans for Centene Corp., Superior’s parent company. Follow J. David McSwane, Andrew Chavez and Tom Fox on Twitter. Up Next As patients suffer, companies profit Imagine being trapped in a bed for more than a year because you can't get the medical equipment you need. Years of poor oversight by the state have allowed health care companies to skimp on essential care for sick kids and disabled adults. Keep reading.

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