A Florida program promises support to families of severely brain-damaged infants. Instead, parents have been forced to choose between parenting and a paycheck. Poor communication and bureaucratic hurdles have made the situation worse.
This article was published on Saturday, April 10, 2021 in ProPublica.
By Daniel Chang and Carol Marbin Miller, Miami Herald
JACKSONVILLE, Florida — Over two decades, Choi “Julie” Nguyen bounced from one low-paying job to the next: dishwasher, custodian, manicurist. As a single mom raising two daughters and a profoundly disabled son, Nguyen could never hold a job for long.
Inevitably, the nurses Nguyen relied on to care for her son, Justin, would arrive late or not at all. Who would suction his mechanical airway, fill his feeding tube or turn him in bed to prevent pressure sores? Who was going to sleep on the couch at the hospital when Justin had surgery or fought life-threatening infections?
Ultimately, Nguyen faced the impossible choice of holding down a job and paying the bills — or looking after Justin and being constantly, hopelessly broke.
Under NICA’s own rules, she should not have had to choose between parenting and a paycheck.
State lawmakers created NICA in 1988 to stem what the law’s advocates called an exodus of obstetricians fleeing Florida and its high malpractice insurance premiums. The law holds down insurance costs by shielding doctors from potentially ruinous malpractice awards for birth injuries like Justin’s, which require a lifetime of medical care. It also forecloses lawsuits from parents like Julie Nguyen.
In exchange, NICA agreed to compensate her claim in 1998 with $100,000 upfront and a pledge that future expenses for her son’s “medically necessary and reasonable” care would be paid.
In October, Nguyen and her daughters, Jessica and Jennifer Pham, 32 and 31 respectively, learned — from Miami Herald reporters — that NICA offers many more benefits than they ever knew were available.
Though Jessica and Jennifer Pham long had told Justin’s NICA caseworkers about the family’s struggles, they said NICA never offered, nor even mentioned, the one thing that would have made the greatest difference in their brother’s life: a steady paycheck for Nguyen for caring for her child. It is a NICA benefit lawmakers authorized in 2002, when Justin was 6.
Now 24, Justin has lived far longer than doctors predicted. It has not been an easy journey, Jennifer Pham said.
“It always felt like we were alone in this,” she said. “Had we known about all these benefits, things would have been easier.”
NICA administrators would not agree to an interview but answered questions about Justin’s family by email after Jennifer Pham formally waived privacy protections.
Administrators said they weren’t aware Nguyen, 60, was having problems with in-home nursing because it was being paid for by Medicaid, a separate state insurer for low-income and disabled Floridians. “NICA also would not have been independently aware if Ms. Nguyen was having difficulty maintaining employment,” the program added.
In 2004, NICA said, the program mailed a benefits handbook to all families in the program — marking the first time in the program’s history that benefits were spelled out in writing for them. Nguyen, a Vietnamese immigrant with a limited command of English, could not read it.
Although 20% of Floridians were born in another country, according to the Census Bureau, the NICA handbook is printed only in English.
Jennifer Pham said NICA absolutely knew the family was struggling with nurses, the insurers that administer Medicaid’s benefits and Justin’s constant hospitalizations — as reflected in more than 8,000 pages, obtained by the Herald and ProPublica, documenting NICA’s interactions with the family.
In October 2020, one day before she spoke with the Herald for the first time, Jennifer Pham wrote to NICA pleading for help with nursing as the coronavirus pandemic made caregiving a challenge. The younger of the sisters had made similar complaints to Justin’s caseworkers in the past, including in August 2017 when she had the staffing agency send NICA a list of dates that nurses had missed their shifts, emails show.
“We don’t have any shift nurses and it’s been a struggle working full-time from home and caring for Justin,” Jennifer Pham wrote in the Oct. 21, 2020, email to Justin’s caseworker. “Finding quality nurses in adult care is difficult,” she added two days later.
NICA’s caseworker had only sympathy to offer — not help. “I am so sorry there is such difficulty with finding nurses right now,” she replied on Oct. 26, 2020. “I hope the situation improves soon.”
Program administrators have had the chance to do more than hope that things improve. But when state legislators proposed reforms to strengthen the program for families, NICA worked to put an end to the proposal.
A 2013 bill would have required NICA to provide families with an annual update on available benefits for their child, and it would have given parents something they have lacked from the program’s start: a seat on NICA’s board of directors, which is made up exclusively of health care industry and insurance interests.
Internal emails obtained by the Herald show that NICA’s executive director, Kenney Shipley, considered the effort “pretty silly.” In one email to a past president of the Florida Obstetric and Gynecologic Society and a lobbyist, Shipley wrote that “we are not here or funded to ‘promote the best interest’ of the children.” The bill died before reaching the Senate floor.
Justin’s family was oblivious to all that. They were busy raising Justin.
Building Trust
Program administrators knew Justin’s injuries were profound soon after he was born at University Medical Center, now UF Health Jacksonville, on Sept. 17, 1996.
Labor lasted 16 hours, the delivery complicated by the umbilical cord being wrapped around his neck, according to medical records. Doctors predicted that he might live a little more than a decade.
According to a note in Justin’s medical records, NICA’s pediatric neurology consultant reported in June 1998 that “as Justin’s brain damage is quite severe, he will likely be bedfast” — unable to leave his bed.
“Child is at near-vegetative state — physically and mentally,” the notes say. “Fetal distress was present early in labor but continued in labor,” the notes say, underscoring the word “continued.”
The notes add: “Post natal course was a disaster.”
Justin’s diagnoses included cerebral palsy, spastic quadriplegia, epilepsy and neuromuscular scoliosis. Because NICA is a no-fault compensation fund, Nguyen need not have determined who was responsible for his injuries to qualify.
Jennifer and Jessica Pham, 6 and 7 when Justin was born, had to grow up fast to help meet the needs of their brother. He would spend the vast majority of his time flat on his back, and he had to be properly hydrated and turned regularly to prevent pressure sores. He became the focus of the family’s life.
As caregivers, Justin’s mother and sisters had more grit and devotion than training and resources. Because of their mother’s limited English, the sisters had to deal with NICA. Jennifer Pham said it was she who called NICA in tears in 2002, pleading for help after it became increasingly difficult to take her brother to doctor appointments strapped in only by a shoulder harness. Although NICA would provide the van, it took almost half a year from when it was requested in writing, the family said.
The sisters learned to crush, mix and monitor Justin’s medications, feed him with a syringe, bathe and dress him. And they learned to relate to Justin through touch and sound and by reading the subtle cues — his eye movements, his breathing patterns, his faint facial expressions.
“You’re guessing whether he’s in pain, if he’s thirsty, if he’s too hot, if something is pinching his side,” Jennifer Pham said.
The family’s primary interaction with NICA was submitting receipts for out-of-pocket expenses, Jennifer Pham said. Sometimes it took months for NICA to reimburse them for items the program could have paid for directly, the sisters said.
In addition to the van, NICA paid a nurse five hours each week to help coordinate Justin’s care from 2012 to 2017. In early 2020, NICA also agreed to pay for Justin’s twice-weekly physical therapy.
Jennifer Pham emphasized that the family is thankful for that and the other help NICA has provided, including the $100,000 payment that all NICA families receive as compensation for not being able to sue. The money helped her mother buy a three-bedroom home in Jacksonville.
“I don’t want to sound ungrateful for the things that NICA has done for us,” Jennifer Pham said. “They have done things for us that have contributed to Justin’s life in good ways.”
But NICA has always been a passive participant in Justin’s care, she said — aware of Justin’s needs but offering to help only after the family had exhausted every other resource.
“Why do we have to beg for it?” Jessica Pham said. “We’re not asking for any more than what they said he was going to get.”
While NICA makes families use every other available payment source before the program will reimburse, Medicaid does the same thing. That makes for complications.
It meant the family had to ask Justin’s doctors to write letters attesting to every item’s medical necessity, secure a denial letter from a Medicaid insurer and then appeal, which sometimes required a hearing. The process was convoluted and could take months of follow-up and familiarity with complex bureaucracies.
NICA also insisted that caregivers, equipment providers and other vendors be compensated at the same rate that Medicaid pays, though the Florida Medicaid program’s pediatric reimbursement is so low that some doctors refuse to accept Medicaid patients. Justin’s records, for example, show a physical therapy group balked at the billing rate, requiring the Nguyen family to find another.
In December 2014, a federal judge said Florida’s Medicaid reimbursement rate was preventing some needy children from getting care. A settlement between the American Academy of Pediatrics’ Florida Chapter, which had filed suit over the payment rates, and state health administrators was intended to improve reimbursement — and quality of care.
“Justin Was Cheated”
In October, Herald reporters told Jennifer Pham that her mother could be paid for watching Justin — and that it was a long-standing policy. Pham, a law school graduate, checked it out herself and confirmed it was true.
She wept.
It was one of many things the family says it knew nothing about, benefits ranging from $30,000 in home renovations to accommodate Justin’s disabilities to $500 a year in therapeutic toys that could have been reimbursed. And that they could have been reimbursed for trips to and from the doctor and hospital.
Some of those provisions are in the 38-page benefits manual, some not. While Nguyen couldn’t read the book, her daughters could have — but were in first and second grade when Justin was accepted into NICA.
“Justin was cheated out of so much that was readily available for him,” Jennifer Pham said.
On Dec. 7, NICA agreed to do what it could have done all along: pay Nguyen for 20 hours a day at $15 per hour to care for Justin. NICA administrators also said they are “working with the family” to provide Nguyen four years of back pay, although the policy allowing payment for parents went into effect 18 years ago.
Jennifer Pham said she wishes NICA would do a better job communicating with families.
“I am grateful that Justin has lived all these years and NICA has supported him. But did we get the things we were promised for a lifetime of support? No.”
Last week ProPublica cited epidemiologists saying New York was "crazy" to keep closing schools over two unlinked positive cases. This week, the city ended the rule.
This article was published on Friday, April 9, 2021 in ProPublica.
New York City announced on Thursday an end to its rule that had led to thousands of public school closures despite little evidence of COVID-19 outbreaks. Schools will now only be closed if testing shows there is viral spread within a school.
Under the old rule, schools were closed if testing found two positive results, regardless of the school’s size and even if the cases were apparently unlinked, such as those involving kids grades apart who never crossed paths. ProPublica contacted 10 epidemiologists and physicians, nearly all of whom said the policy didn’t make sense. “It’s ridiculous. Obviously ridiculous,” said Dr. Uché Blackstock, a former professor at New York University who now runs a firm focused on addressing racial inequities in health care.
Going forward, schools will only be closed if they have four or more positive tests that, critically, are traced to in-school transmission.
Research has found that schools can be safely reopened when protective measures are put in place, such as universal masking and good ventilation. Of the positive tests at schools that have been traced, most have resulted not from outbreaks within school buildings but from spread outside of them.
New York City Mayor Bill de Blasio first said back in early February that he would be revisiting the two-case rule. But changes were opposed by the city’s teachers union. Last week, the United Federation of Teachers told ProPublica it remained supportive of the policy.
But the union today expressed support for the changes. “With our increased knowledge about the spread of the virus, and as more teachers and other school staff have been vaccinated,” it said in a statement, “our medical experts are convinced that the rule can be changed and still maintain safety.”
“We worked together with the unions to figure out the right approach going forward,” de Blasio said at a press conference announcing the changes on Thursday.
The tensions in New York City echo the debates over school reopenings across the country. While an increasing number of schools have brought kids back for in-classroom teaching, many communities have moved more slowly. The majority of children in California still do not have access to in-class instruction.
Instead of closing when two cases are found in different classrooms, New York City schools will conduct further testing. But individual classrooms will still be closed when testing finds at least one positive case.
Dr. Elissa Schechter-Perkins, an epidemiologist and infectious disease doctor at Boston University School of Medicine, said she’s concerned the new policy will still result in children unnecessarily losing access to in-person schooling.
“Shutting down a class after only the introduction of the virus into the classroom is not necessary,” said Schechter-Perkins, whose research recently prompted the Centers for Disease Control and Prevention to revise its guidance on spacing in classrooms. “We have ample evidence that the rate of in-classroom secondary transmission from that index case is exceedingly low.”
Officials called for reforms hours after an investigation by the Miami Herald and ProPublica identified gaps in a Florida program that strips families of their right to sue when births go horribly wrong.
This article was published on Friday, April 9, 2021 in ProPublica.
By Carol Marbin Miller and Daniel Chang, Miami Herald
Declaring that Florida leaders “can and will do better” for the families of catastrophically brain-damaged children, the state’s top financial regulator Thursday initiated an audit of the state program that oversees care for those injured in childbirth.
Chief Financial Officer Jimmy Patronis said Thursday that the Office of Insurance Regulation, which he supervises, will examine the books of the state’s Birth-Related Neurological Injury Compensation Association, or NICA. Patronis’ office already has begun an “inspection” of the program, which was the subject of an investigative report published hours earlier by the Miami Herald and ProPublica.
The news organizations detailed how NICA has amassed nearly $1.5 billion in assets but has denied or delayed help for struggling families — sometimes spending tens of thousands more in legal fees fighting requests for benefits than it would cost to help parents who depend on the program to care for their children.
In the budget year ending June 30, 2020, NICA earned six times as much in investment income, $124.6 million, as it spent on families of brain-damaged children, $19.8 million.
And while many NICA families struggle, the professionals who do business with the fund do not, the Herald reported. NICA paid its lawyers $16.9 million between 1989 and 2020. That’s more than the program spent on therapy and doctor and hospital visits for children — combined — during the same period, about $10 million.
“We need to make sure these kids and their families aren’t being nickel-and-dimed,” Patronis said in his statement, echoing the language of two parents quoted in the Herald. “This program needs to treat these children with kindness instead of treating them as though they are a liability for shareholders.”
In a written statement late Thursday, NICA administrators said that, while the Herald presented “a moving and emotional story of several families,” the investigation failed “to provide a completely accurate portrayal” of the program.
NICA said that the stories included criticism of the program for issues “that occurred more than 15 years ago, in many instances prior to the current NICA leadership.”
“We have worked tirelessly to address issues that have arisen over the years, including making processes more responsive to families’ needs, while fulfilling our obligation as fiscal stewards,” read the statement sent by Executive Director Kenney Shipley.
NICA defended its mission to reduce malpractice premiums for doctors and said it had followed through on the Legislature’s intent to “provide catastrophically brain-damaged infants with the medical care they need without subjecting their families to protracted legal battles. We take this critical mission very seriously, recognizing the physical, emotional and financial toll it takes on families to care for a highly disabled infant, child or adult.”
The program said it will work with Patronis on reforms that Shipley and NICA’s board had once opposed, including adding a parent to the board and raising awareness of program benefits for families.
Separately, Shipley also sent an email to NICA families, repeating many of the same points. “We aim to treat every family in the program fairly and individually, providing the benefits they are entitled to based on their specific needs,” Shipley wrote.
The sister and legal guardian of a Jacksonville man who was accepted into NICA in 1998 said she would like to see the Florida Legislature reform the program so it is required to effectively communicate benefits to caregivers who are often overwhelmed with the demands of caring for a profoundly injured family member.
Jennifer Pham, 31, said she long had told NICA about her family’s struggles caring for her brother, Justin Nguyen, 24.
Their mother, Choi “Julie” Nguyen, had trouble holding a job because of the demands of caring for Justin, Pham said. Nurses would show up late or not at all for shifts, causing Julie Nguyen to miss work. Other times, Nguyen has been unwilling to leave Justin alone during his many hospitalizations.
For nearly 20 years, NICA has been authorized by state law to pay parents who miss work or leave careers to care for their injured child at home. But NICA’s caseworkers never told Nguyen or her daughters about that benefit. Pham learned of it when Herald reporters told her during an interview in October.
“There needs to be a stronger relationship between NICA and the families. You have to work together,” Pham said. “My experience so far is that NICA just puts everything on the family.”
In 1988, the Florida Legislature created NICA as part of a slate of lawsuit restrictions designed to lower malpractice premiums for doctors. The law forbids parents from suing their doctor and hospital when complications during childbirth cause “substantial” brain damage. In exchange, NICA offers parents a one-time $100,000 payment and the promise of “medically necessary” and “reasonable” health care for their disabled child.
The Herald and ProPublica reported that NICA often denies requests for care and services, and forces families to file costly appeals before the state Division of Administrative Hearings, which adjudicates birth injury claims, when they are rebuffed. The program’s records show NICA has rejected requests for wheelchairs, therapy, in-home nursing care and supplies for children with feeding tubes.
Since its inception, the program has never included the parent of a disabled or medically fragile child or an advocate for such families on its five-member, unpaid board of directors. The current board, all men, represents only health care and insurance industry interests.
In his statement, Patronis said that his wife, Katie, had sustained complications during childbirth for both of the couple’s sons. “I know that every loving parent is stressed out and undergoing an intense amount of emotions when their children are at risk,” Patronis wrote. “I cannot imagine or understand how difficult things are for families of children with neurological injuries.”
He added: “We’ve got to figure out a way to make things easier for them.”
Patronis, who served in the Florida House of Representatives from 2006 to 2014, said lawmakers “should look at changing the laws governing board appointments,” adding the state law governing NICA “doesn’t require a non-doctor [or] parent ... to be a member, yet requires doctors and insurer interests to be represented.”
“It’s also ridiculous that NICA’s money managers get more in lump sum payments than parents with sick babies,” Patronis added.
Florida lawmakers already are considering legislation that would increase parents’ one-time benefit from $100,000 to $250,000, as well as an amendment to raise the program’s death benefit from $10,000 to $50,000. The legislation was proposed after NICA hired a publicist and was fielding questions and public record requests from the Herald.
Patronis’ statement appears to challenge the program’s core principle. Parents whose children meet the criteria for NICA benefits generally have no choice but to forfeit their right to file a lawsuit. But in his statement, Patronis said “parents shouldn’t be put into a position where they feel pressured into signing their rights away.”
A sponsor of the pending legislation, Sen. Lauren Book, a Democrat, said that both she and the bill’s other Senate sponsor, Republican Sen. Danny Burgess, both “were outraged, obviously, at the things uncovered by [the Herald], and we have been looking at many different ways to reform” the program.
Book said she and Burgess, who could not be reached, are amending their bill to require the state to include a family member on the NICA board. “I was stricken by how these moms are left to carry on, oftentimes when families crack under the pressure of these immense challenges,” she said.
The two lawmakers also would like to require NICA to appoint a parents’ “advocate” who can “help families navigate the system” and receive the full benefits state law requires.
“We have to ensure these families have everything they need when having to deal with a lifetime of challenge and pain,” Book said.
Ruth Jacques, distraught over the fatal injuries her son suffered during childbirth, couldn't sue her doctor because of an obscure Florida state law. When she protested at his office, she was told to cease and desist.
This article was published on Friday, April 9, 2021 in ProPublica.
By Carol Marbin Miller and Daniel Chang, Miami Herald
ORLANDO, Florida — On the day Reggie Jacques was born, doctors at Winnie Palmer Hospital in Orlando told his parents that there was no hope, that his brain had gone too long without oxygen during his difficult birth. But Reggie refused to die.
On his sixth day, said parents Jean and Ruth Jacques, doctors urged them to remove Reggie from his ventilator. They said he would surely stop breathing. The couple agreed a month later. But Reggie wouldn't die.
Around day 60, doctors asked the couple to sign a "do not resuscitate" order. They declined. And Reggie still refused to die.
For 95 days, Reginald Jacques refused to die.
But on the 96th day, Sept. 19, 2016, something felt wrong. Ruth Jacques surrendered to an irresistible impulse to hold her son after a day's work for an Orange County social services agency. "I was driving the car like a madwoman," Jacques said of her early evening trip to the hospital.
Jacques flew through red lights. Uncharacteristically, she left her car in a parking space for disabled drivers. She ran up three flights of stairs to the Neonatal Intensive Care Unit, where, she said, Reggie's monitor was beeping, and he appeared to be in distress.
She picked up her infant son from his bassinet — all tubes and bandages and chirping monitors — and placed him gently on her chest. "With the little strength he had left, he lifted up his head and looked back at me," she said.
Jean and Ruth Jacques discuss the difficult birth of their son Reggie and their interactions with hospital staff. Credit: Emily Michot/Miami Herald
"One minute later, his heart stopped. It was more like our heart stopped."
Four years later, Ruth Jacques' heart beats for two as she wages a campaign to demand answers from the doctor who delivered her son. She believes Florida's state-sponsored Birth-Related Neurological Injury Compensation Association, or NICA, robbed her of the right to seek justice through the courts for the harm he suffered at birth and three months of agony as he fought for life.
Florida lawmakers created NICA in 1988, responding to obstetricians' complaints that their malpractice insurance premiums were too high. The law bars parents like Jean and Ruth Jacques from pursuing lawsuits against doctors and hospitals when a baby is born with catastrophic, even fatal, brain damage from oxygen deprivation or asphyxia during childbirth.
If the birth injury meets NICA criteria, even in cases where the doctor or hospital may have made a glaring error, parents typically have little choice but to forgo a lawsuit and accept the program's compensation, which consists of a $100,000 settlement upfront, and "medically necessary" and "reasonable" healthcare for the duration of the child's life.
If the child dies, there is an added $10,000 funeral benefit.
The Jacqueses hoped to sue their obstetrician and hospital for negligence, only to learn from their attorney of the law that created NICA. Stripped of that right, they settled for filing a malpractice complaint with the Health Department. They received a form letter saying their complaint had been dismissed because the doctor's actions did not violate the profession's "standard of care." There was no further explanation. Ruth Jacques said neither she nor her husband was interviewed by investigators.
The Jacqueses cannot appeal the investigation's outcome, or even read about it, beyond the form letter. In Florida, those records are sealed and available only to the doctor.
That wasn't the state's only betrayal, Ruth Jacques said.
The day after Reggie's death, overcome by anger and despair, she did the only thing she could think of: She printed leaflets warning prospective patients to stay away from Dr. Ricardo Lopez, the obstetrician who delivered Reggie. She said she handed them out in front of his Orlando medical office — and distributed a few to patients in his waiting room.
"I felt like the world was shutting me up," she said. "I wanted to be heard."
Ruth Jacques said she was silenced again. She learned that Lopez was free to do what she could not: file a lawsuit. Her attorney told her if she persisted in protesting she might end up a defendant.
A lawyer for Orlando Health, which owns Winnie Palmer and employs Lopez, wrote to the Jacqueses' lawyer in January 2017: "I respectfully demand that Ms. [Jacques] cease and desist from further attacks on Dr. Lopez and [the hospital] regarding this matter." Then the couple's lawyer wrote to Ruth Jacques.
"I understand your anger," the lawyer explained in an email. But, she added, "Any kind of verbal attack or public complaint about Dr. Lopez or Orlando Health could lead them to sue you and your husband personally."
Lopez, who did not sue, declined to respond to the Miami Herald's requests for an interview, forwarding the inquiry to Orlando Health.
Alayna Curry, an Orlando Health spokeswoman, said the hospital would not discuss Reggie's calamitous birth, even though his mother has.
"Our medical team respects the wishes of our patients when it comes to their delivery experience," she said in a prepared statement. "When a medical emergency arises during a delivery, time is of the essence and our physicians will speak with the patient about the recommended course of action."
"You Better Push"
There is sharp disagreement over precisely what was said and when inside the delivery room.
Ruth Jacques provided the Herald a copy of her medical records, which contain a notation from Lopez that, based on "severe" fetal heart recordings, "a C-section was offered."
"The patient refused," Lopez wrote.
A nurse also reported "Pt refused C-section" in a notation dated two days after Reggie was delivered.
Jacques said she did no such thing, and the records do not contain a signed form from the mother refusing a C-section. The form is considered an industry "best practice," but not a requirement.
In a 2017 letter to the state Health Department, Ruth Jacques said she insisted that Lopez never told her Reggie's life was in danger.
"You better push, or you're going to have a C-section," she said she was told by the doctor. "In my understanding, he is threatening me [with] a C-section if I don't push, not that the situation … was an emergency."
Ruth Jacques did continue pushing, according to her medical records. Lopez attempted to deliver Reggie using a vacuum device, which popped off the infant's head three times before the fourth pull succeeded.
Dr. Nicole Smith, medical director of maternal fetal medicine practice at Brigham and Women's Hospital, Harvard Medical School's teaching hospital in Boston, said in general the responsibility lies with doctors to explain their rationale and the benefits and risks of continuing in labor or moving to a surgical delivery.
"Mothers maintain the right to decline a C-section," Smith said in an email, "but it is the provider's responsibility to ensure that they understand the risks and benefits to the extent possible in what is typically a highly stressful situation."
Smith did not review Ruth Jacques' case or comment on the delivery.
Ethical guidelines of the American College of Obstetricians and Gynecologists also place the onus on the obstetrician to provide the patient with "adequate, accurate and understandable information."
The group advises, however, that even a signed form does not guarantee that the ethical obligations of informed consent have been met.
Reggie's parents believe their son would have lived had Lopez initiated a timely C-section, potentially preventing Reggie's brain from being starved of oxygen. But they will never really know.
Like many NICA families, the Jacqueses said they had no idea that they had lost their right to file suit.
Ruth Jacques said she signed forms acknowledging that her doctor and the hospital had informed her of NICA before Reggie's birth. But she didn't read them. She said her OB-GYN had her sign them on her first appointment. At the hospital, the forms were tucked inside a stack of documents handed to her when she showed up in labor, distracted by impending motherhood, too late to change her mind and seek out another hospital.
After they lost Reggie and learned that a lawsuit was foreclosed, the couple said their sorrow would turn to outrage when they discovered that Lopez had a history with NICA.
Aside from Reggie's case, the doctor has been named in four NICA claims, including two petitions filed prior to Reggie's death. Not every NICA claim is accepted for compensation. But one of the first two lodged against Lopez was.
Two other claims were submitted after Reggie died. Those two were rejected because the newborns weighed less than 5.5 pounds — the legal threshold to qualify for NICA, a requirement intended to eliminate very premature babies from eligibility. In the case of a rejected claim, the family can sue. But none of the rejected claims has been followed by a lawsuit.
Being named in a petition does not mean a doctor committed malpractice — even if the claim is compensated. It only means that the case meets the narrow criteria of the no-fault program.
Bonded by Sorrow
If NICA families are members of an unenviable fraternity, families whose child died are its saddest chapter.
A total of 1,238 NICA claims have been made from the inception of the program through the beginning of April. NICA said at least 440 of those were accepted for coverage, which includes at least 143 from parents whose child had died by the time the claim was accepted.
Another 50 children whose claims were accepted for compensation died after they entered the program, NICA said in an email. Among those 50, the average life span after acceptance was 8.2 years. The oldest lived 29 more years. The youngest survived one day after the claim was accepted.
For some parents, NICA cannot provide what they want most: accountability.
There are practical considerations, said David Studdert, a Stanford University professor and expert in health law who co-authored a study of NICA in 2000.
Some of those families who were accepted into NICA likely would have gotten nothing had they been allowed to pursue a lawsuit.
But there is catharsis in discovering what went wrong, who is responsible — even in just being heard — said Kenneth Feinberg, a lawyer who has designed and administered compensation funds in the wake of some of America's worst tragedies: the Virginia Tech massacre, the Sandy Hook Elementary shooting, the rampage at Pulse nightclub, Sept. 11.
The fund established after the Sept. 11 attacks was entirely voluntary, and 97% of eligible claimants opted to take the money, Feinberg said, forfeiting the right to sue. The program had an unusual feature: Claimants could appear before Feinberg or a staff member behind closed doors to express their grief; 1,500 did.
"All kinds of people came to vent, angry, not at the federal government. Angry at God," Feinberg said.
Feinberg said many described the program as an exercise in justice, but he saw it differently. "I don't think those words have much meaning when you've lost a loved one," he said. "The best word I use is mercy."
Reggie Never Cried
Jean Jacques' father died in March 2015, on the same day the couple returned from their Caribbean honeymoon cruise, leaving them despondent and Jean Jacques as the lone male heir. They decided they wanted to become parents right away. They were hoping for a boy, someone to carry forward Jean Jacques' father's last name and legacy.
They found a house suitable for raising kids. Ruth Jacques' family threw a baby shower. They painted the walls of Reggie's nursery teal and gray, bought a brown crib and attached stickers of giraffes, lions and zebras to the walls.
On the morning of June 14, 2016, Ruth Jacques went to see her obstetrician for a regularly scheduled appointment. She said there was no indication that Reggie was ready for delivery. She drove to work at the social services agency where she was a neighborhood coordinator.
But the next morning, she woke up with a fever and tremors, so she went to Orlando Health Winnie Palmer Hospital for Women & Babies. There, her water broke, and she went into labor. Lopez had not been her obstetrician previously but was there for childbirth.
To Ruth Jacques' ears, Lopez was accusing her of failing to adequately push what she later learned was a 10-pound baby.
When Reggie finally was born, he was essentially lifeless. His first two Apgar scores — measures of his vitality, on a scale of one to 10 — were zero and zero. He required four doses of epinephrine to start his heart.
"Normal babies, when they are born, they cry, they open their eyes," said Jean Jacques, an Orange County Schools paraprofessional and full-time student at the University of Central Florida. Reggie did not cry.
He was placed on a ventilator — which doctors would recommend unplugging six days later, Ruth Jacques said. Bereft of answers, Ruth and Jean Jacques asked for a meeting.
It took place a week after Reggie's birth, in a conference room near the intensive care unit, with a U-shaped wooden table. Ruth Jacques' father, sisters, aunt and the family's pastor joined the couple. She recalls a hospital lawyer standing against a wall opposite her and Lopez sitting at the head of the table, his arms folded across his chest. He didn't look at her, she said. The doctor barely spoke.
What happened? she asked. Why was her baby on a ventilator with little to no hope of survival?
"He looked at me in the eye, and he said: 'You did not want to have a C-section,'" Ruth Jacques said.
"And I said to him: 'So, are you implying that I killed my baby?'"
Ruth Jacques said the doctor unfolded his arms and wrapped one under his cheek. He didn't answer.
When the meeting adjourned, Ruth said, she met separately with a Winnie Palmer neurologist. "I was informed that my child would 'never walk, talk or ever be able to do anything for himself. He would live in a vegetative state.' "
At first, the couple resisted removing life support. "We were praying that God would help," she said.
But the strain became unbearable, the couple said. They said one doctor told them: "If you really believe in God, why would you do that to your child?" The family relented.
"That was the hardest decision for us to make," Jean Jacques said.
Ruth and Jean Jacques and extended family members gathered round the newborn as a musician played soft and somber notes on a guitar. Someone recorded Reggie's heartbeat on a disc and handed it to his father. A doctor shut off the ventilator, then pulled the breathing tube from Reggie's mouth and throat, the parents said.
Reggie gulped for air. His mother covered her ears to muffle the sound of his gasping. Jean Jacques paced the floor. The couple fixated on Reggie's heart monitor and the clock just above it. It seemed like hours, they said. And then, unexpectedly, Reggie began to breathe on his own.
His Finest Outfit
Reggie lived another two months. He never left the hospital.
He wore his finest dress-up clothes only once — the day his parents buried him.
He was laid to rest inside an impossibly small white coffin, dressed in a short-sleeved, buttoned-down shirt and a tie that was too big for his slender body. The tie and shirt were both white, the color of purity.
The couple buried Reggie far from their home, at Greenwood Cemetery. They didn't want Ruth Jacques visiting her son daily. She needed time to heal.
But a year after her son's death, Ruth Jacques took a job as a grants coordinator with Orange County's government downtown, which is near Greenwood, a historic cemetery. Her son's graveyard is visible from her office. The boy who lived 96 days was laid to rest near Orlandoans whose full lives gave them prominence, including a U.S. senator and two mayors.
Jean and Ruth Jacques preserved Reggie's short life in pictures: His arms and legs stretched out like a wooden puppet from the contractures — a shortening and hardening of muscles and tendons — that brain damage wrought. An oxygen tube extended from his nostrils. In one photo, he appears to be looking directly at the camera, though the doctors had said he was incapable of such purpose.
Ruth Jacques found direction in her son's death, vowing not to let the same thing happen to other parents.
She took to her keyboard, writing to state lawmakers. And to the Florida Justice Association, a group of lawyers who represent litigants like her. Her email to the trial lawyers recounted Reggie's birth and death in detail. It covered seven pages and said Reggie "will always be a memory of a scar that will never truly heal." There was no response, she said.
She wants Lopez to remember, as well. And so, she said, every year on Reggie's birthday — and on the anniversary of his death — she files a new complaint with the Department of Health. It's a symbolic act, but she wants to remind the doctor that Reggie lived, and that he died.
"He is going on with his life, while we the families are stuck on yesterday."
Jean and Ruth Jacques, now 35 and 32, live in a modest home in Orlando. They're raising the little brother Reggie never got to know, 3-year-old Raphael. Another child, Reynaud, was born on Jan. 15. The money she received from NICA will never replace the loss, Ruth Jacques said.
"That's blood money," she said. "It's not going to bring him back."
A Florida program designed to reduce doctors' malpractice bills strips families of their right to sue, offering instead a one-time payment and promises to cover medical expenses. Some parents report a bureaucratic nightmare that's anything but supportive.
This article was published on Thursday, April 8, 2021 in Kaiser Health News.
By Carol Marbin Miller and Daniel Chang, Miami Herald
A birth gone horribly wrong left Jasmine Acebo with profound brain damage and a bleak future, one defined by wheelchairs, mechanical airways, feeding tubes, frequent hospitalizations, in-home nursing and constant pain.
Unable to work, her overwhelmed mother became dependent on food stamps and sometimes cash assistance. She watched helplessly when her newborn convulsed with seizures. She saw her daughter turn blue and nearly suffocate during a feeding.
A Florida program promised help: medical care, money for expenses — a lifeline of support.
But that help, said Yamile "Jamie" Acebo, was often delayed, denied or deficient. And it included what she viewed as a shameful suggestion from a program administrator making a home visit: Would Acebo wish to place her daughter in an institution? The thought of Jasmine, surrounded by strangers and not the mother who loved her, was horrifying.
"I will care for her until the day the good Lord takes her home," said Acebo, a single mother living with her parents when Jasmine, her first child, was born.
In every other state but one, Jamie Acebo and hundreds of other parents like her could have pursued multimillion-dollar lawsuits to recoup the costs of raising a catastrophically disabled child. But a Florida law enacted in 1988 — to reverse what advocates and lawmakers called an exodus of obstetricians fleeing high malpractice insurance premiums — stripped them of that right.
Florida's Birth-Related Neurological Injury Compensation Association, also called NICA, aims to lower obstetricians' malpractice costs while providing families of those who suffer the most severe birth injuries with monetary compensation and "medically necessary" healthcare. It prevents parents from suing, even if the doctor or hospital may have made an egregious mistake.
The law was also supposed to provide a dignified existence and financial cushion for families crushed by the delivery of an infant with devastating brain damage. But some parents say NICA is indifferent to their fears, anxieties and depression, and hostile to their needs.
Jasmine's special bed collapsed? Can't it be welded? NICA asked.
Jasmine's energy-hungry medical devices inflating the monthly power bill to $500? NICA offered $25.
Jasmine's outgrown her wheelchair? Stretch it out, said NICA.
"They were supposed to take care of her for the rest of her life," Acebo said. "They were nickel-and-diming me for 27 years."
A bill in 2013 could have made NICA more responsive to the Acebos and other families. NICA's executive director, Kenney Shipley, argued for its defeat. "Most of this is pretty silly since we are not here or funded to 'promote the best interest' of the children," she wrote in an email, and later predicted lawsuits against NICA if an "ambiguous standard" were adopted.
NICA pays parents of children with neurological injuries $100,000 upfront and promises a lifetime of healthcare, much of which actually comes from Medicaid, a different state program that insures impoverished and disabled Floridians. When a child dies, as Jasmine did in 2017, NICA pays families an additional $10,000 for funeral costs.
Appeals and internal records show that Jasmine's mother was one of many parents who spent years locked in frustrating fights with NICA after learning that $100,000 is woefully insufficient to care for a severely brain-damaged child. They say NICA doesn't inform them about benefits to which they are entitled, while rejecting or slow-walking coverage for therapy, equipment, medical treatments, medication, in-home nursing care — even wheelchairs.
To assess NICA's performance, reporters from the Miami Herald, in partnership with the nonprofit investigative news organization ProPublica, examined court records, board minutes, actuarial reports, state insurance records, emails, legislative records, medical studies, archival records and case management logs for deceased children, as well as Health Department and financial services reports. Two families provided reporters their full internal files. Reporters observed board meetings and interviewed parents, doctors, lawmakers, lawyers, ethicists and healthcare administrators.
The Herald filed a lawsuit seeking additional records, including unredacted case management logs for deceased children that would show how NICA handled claims. NICA administrators fought to keep the records secret, and a judge ruled in NICA's favor, saying families had a right to privacy.
Reporters examined all 1,238 NICA claims filed at the Division of Administrative Hearings, or DOAH, from passage until today.
The investigation revealed:
• NICA administrators narrowly define what medical care is necessary in a way that is far stricter than private insurance — or even the federal Medicare program. The program's definition of medical necessity ensures NICA spends less on care for children, causing friction and frustration.
The Herald found instances of NICA questioning the medical necessity of wheelchairs, medication, physical therapy — and extra feeding bags for a child with a gastrostomy tube.
"At some point, nickel-and-diming people has a diminishing return, if any return at all," Jim DeBeaugrine, a former head of the Florida Agency for Persons with Disabilities, said of NICA.
• If families push back, the program sometimes spends more money fighting them than it would have cost to provide help. NICA paid lawyers nearly $3 million to wage an 11-year fight against parents who sought compensation for giving up jobs and careers to care for their disabled children — a suit NICA ultimately settled, giving parents essentially what they wanted.
NICA paid $138,000 in legal fees and costs fighting a mother's request for $11,058 in reimbursement for a treatment that could help her daughter swallow. NICA turned down a mother's request for a wheelchair, modified van and an occupational therapy program for her child, then, when she appealed, twice hired a private investigator to tail the mother and son.
Even with the $100,000 one-time payment, NICA families often end up in financial hardship, generating requests that go beyond the scope of traditional insurance.
"A lawsuit against the physicians would have covered all of these expenses, but that right was taken from us," wrote one parent, David Morgan, who sought help buying a TV and other equipment for his bedbound, pain-wracked young daughter. The request was denied.
• While many NICA families live in constant financial jeopardy, NICA has an ever-growing stockpile of money: nearly $1.5 billion. The program doles out about $3.5 million annually to investment managers. NICA's lobbyists are paid nearly $100,000 yearly — a total of $888,000 since 2011 — to, among other things, fend off efforts at legislative reform.
After the Herald and ProPublica began investigating NICA, administrators hired a public relations firm for close to $100,000 annually to generate favorable press — and proposed an increase in money for NICA families, noting that it would be a public relations boon whether it passed or not.
"It's a scam," Alex Sink, Florida's chief financial officer from 2006 through 2010, said of NICA. "The pot is getting bigger, and people are feeding off the investments. They have no incentive to reduce the money in the fund in order to help parents. The priorities have gotten totally misplaced."
• The program has long resisted efforts to include the voices of parents on its board. NICA's board has never included a parent or an advocate for disabled or medically fragile children. In 2013, when a lawyer for NICA parents suggested adding a mom or dad, administrators refused to consider it. The program said adding a family member "could lead to the perception of favoritism by other parents" receiving benefits.
"We know that there is a lot of depression among the parents of medically complex kids and a high divorce rate," said Gwen Wurm, an assistant professor of clinical pediatrics at the University of Miami Miller School of Medicine. "We know that the siblings of medically complex kids are affected. Anything we can do to help maintain these families has benefits beyond the children themselves."
In the weeks ahead, the Herald and ProPublica will explain how NICA has saved the state's medical malpractice insurers hundreds of millions of dollars in payouts to families by shifting those costs onto Medicaid, which is funded by Florida and U.S. taxpayers. The news organizations will show how doctors and hospitals attempted to strip parents of their rights to make decisions for their children after those parents rejected NICA benefits in hopes of retaining the right to sue for malpractice.
Citing "the complex nature of [the] subject matter," Shipley, the executive director, and other administrators declined to speak directly with reporters, but they answered more than 100 questions by email.
The program said lawmakers "created NICA to solve a specific challenge and it has done so very well."
"We are proud to manage one of the state's most fiscally sound programs, maximizing the impact of every dollar," NICA said.
NICA said the program's $1.5 billion in assets does not present the whole picture. Administrators calculate at least $1.05 billion in liabilities for future expenses to care for those in the program.
"It is not 'extra' money to be spent freely," administrators said, "but instead must be carefully managed by NICA to ensure that it is available to provide quality care for children in need."
Administrators quoted a 22-year-old report from the Archives of Pediatrics and Adolescent Medicine, now called JAMA Pediatrics, which said NICA recipients were more pleased with the care they got than parents of other disabled children who filed lawsuits.
Not everyone is upset with the help NICA provides. In the early years after entering the program, Rock and Shawna Pollock fought with NICA constantly: over reimbursement for a blender, feeding bags, mileage to and from the hospital, home renovations and a device used to attach an iPad to their disabled son's wheelchair, records show. "They're trying to nickel-and-dime us," Rock Pollock said in a 2011 deposition involving his son's case, echoing Acebo's complaint almost to the letter. "Right now we're living in hardship."
But in a December interview, Pollock said his relationship with NICA has improved, and he now owes much to the program, which has helped the couple provide for Rock Jr. "The only people that's there for my family is NICA," the elder Rock Pollock said. "They take care of him."
Susan Camacho's grandson, Jesus Camacho, whom she is raising, also is a current NICA claimant. "NICA has never disappointed us," she said.
Modeled after a similar program in Virginia — the only other one in the nation — NICA emerged in an era when insurers blamed jury verdicts for escalating premiums on medical malpractice coverage for doctors, particularly obstetricians, whose errors could cause ruinous disabilities requiring a lifetime of care.
At the time, the Legislature also passed several laws to clamp down on verdicts — which were reported to be as high as $6.2 million in 1991, and as much as $33 million in 2017 (in an instance where the doctor was not a NICA participant), for cases of catastrophic birth-related brain damage. In addition to creating NICA, the Legislature passed laws in 1988 requiring voluntary arbitration, and pre-suit investigations to establish negligence prior to filing a lawsuit.
Lawmakers informally called the NICA legislation "the bad baby bill." Newspapers adopted the moniker.
Protecting Doctors
Since NICA's inception, 1,238 families have petitioned for coverage, an average of three claims per month. A little more than a third — 440 petitions — have been accepted for compensation. Of those approved, 143 children were deceased when their parents applied. Another 50 children died after their claim was approved.
But if NICA was a trade-off, many parents say it was one-sided. While the program provided discount-rate protections to doctors, hospitals and insurers, parents like Jamie Acebo believe it passed the pain onto them alone.
Not only are NICA parents excluded from the program's governance, but every member of the program's board of directors, all men, has a stake in blocking reform.
In addition to the chief operating officer of Florida's largest malpractice insurer, The Doctors Company, NICA's unpaid board includes two physicians, a hospital administrator and the board chairman, who is designated as the representative of Florida citizens. His day job is running an insurance agency. Board members did not respond to emails from reporters.
There are two physicians on the board, both of whom are obstetricians who participate in the program. They were each involved in a delivery that led to a NICA-compensated claim.
NICA, Acebo said, "wasn't created for me. It wasn't created for my kid." She added, "They had all the power."
NICA covers a specific type of injury to the brain or spinal cord of a newborn caused by oxygen deprivation during labor, delivery or immediately after birth. For NICA to compensate families in such cases, the newborn must weigh at least 2,500 grams (5.51 pounds) and the injury has to occur in a hospital. A child must be substantially impaired both physically and cognitively to qualify.
If the doctor has paid a $5,000 annual premium and the hospital has paid a $50-per-birth fee, families are prevented from suing. Some parents fight to avoid the program by arguing that their child's injuries don't fit the criteria. That can lead to expensive court battles with dueling doctors and anguished parents.
In the budget year ending on June 30, 2020, NICA earned six times as much in investment income, $124.6 million, as it spent on families of brain-damaged children: $19.8 million.
The program called its fees to investment managers "reasonable for the level of assets under management."
Flush with cash, the program paid its lawyers $16.9 million between 1989 and 2020 — more than NICA spent, combined, on therapy and doctor and hospital visits for children during the same period, which was about $10 million. And unlike the standard settlement awarded to families, the money paid to NICA's attorneys has increased over the years — from $75 an hour to as much as $400, depending on the assignment.
The $100,000 lump sum paid to families dealing with hardship remains set at the same level as 1988, although it has half as much buying power. The $5,000 annual assessment for obstetricians is also the same as in 1988, even as the cost of every other type of insurance, including standard malpractice coverage, has gone up.
Also unchanged is the program's reliance on Medicaid. NICA has saved the state's medical malpractice insurers hundreds of millions of dollars in payouts to families by shifting some of those costs onto Florida and U.S. taxpayers through Medicaid — though that policy is currently the subject of a pending whistle blower lawsuit in federal court.
"Bad Baby"
Jasmine Acebo was born on July 26, 1989, at 6:06 p.m. Her time in NICA dates back nearly to the program's inception, making her mom — as much as anyone in Florida — an authority on the program, and her records, 4,639 pages of which were obtained by the Herald, an archive of its practices.
Her mother recalls the birth vividly.
Then barely 20, Acebo lay in her bed at Hollywood Memorial Hospital, groggy and exhausted. She had given birth for the first time two hours earlier, and she still hadn't seen her baby. Her cousin, who was working a shift that night as a neonatal intensive care nurse, walked in. She wasn't smiling.
Even through the fog, Acebo could tell that a somber Madeline Otero wasn't there to offer congratulations. "She had her nurse's hat on," Acebo said, "not her cousin's hat."
She handed Acebo a Polaroid: A tiny newborn, lost in a tangle of tubes. A ventilator in her mouth. A drain from her stomach. An IV in her scalp, the only place nurses could find a vein. A heart monitor. Wires and cables.
As the gravity of what she saw gripped her, Acebo silently prayed: Oh my God. Lord, save her. Heal her. Make her better so I can take her home. Heal my baby, please.
In an April 1993 deposition that was part of the NICA screening process, NICA's paid medical expert said that during Jasmine's delivery the doctor trying to break Acebo's water pierced the placenta that carried blood and oxygen to her brain. As her lifeblood drained away, so too did any chance for Jasmine having a normal life. What she would have in abundance — besides unrelenting pain — was her mother's devotion.
Jamie Acebo faced a future she could not comprehend. A friend, a paralegal who had just delivered a stillborn baby, made an appointment for Acebo to see a lawyer and accompanied her to the consultation. When Acebo described the case to the lawyer, he told her about NICA.
In his sworn testimony, the NICA expert described how, most likely, Jasmine's placenta was inadvertently punctured during an attempt to hasten labor. Her heart rate plummeted from the normal 140 beats per minute to 65.
"That's bad, isn't it?" the expert witness was asked under oath.
"It sure is," he replied. "It's as if they shut off the blood supply of this kid."
During Jasmine's birth, an expert said, the doctor trying to break Acebo's water pierced the placenta that carried blood and oxygen to the baby's brain.
"They got what we would consider to be a less-than-optimal infant," the expert said. In more stark language, he called Jasmine a "bad baby," apparently referencing the law's nickname.
Frank Rainer, general counsel for Memorial Healthcare System, which owns the hospital where Jasmine was born, said in a prepared statement that "even with the best intent, the best medicine and the most skilled experts, there is still a possibility of a negative outcome anywhere in medicine."
He added: "High risk obstetrics has become a challenging service to provide in our community because of the small pool of highly specialized physicians available and the risk of costly litigation in this field." Reporters were unable to reach the obstetrician who delivered Jasmine in 1989.
Most children accepted into NICA are diagnosed with an injury called hypoxic-ischemic encephalopathy — one of Jasmine's conditions — in which oxygen deprivation and limited blood flow cause damage to a baby's brain during childbirth. The condition can result when the umbilical cord is wrapped around a baby's neck or when a mother's uterus ruptures. Delays in performing Cesarean sections can contribute to brain damage.
When NICA was signed into law, Florida OB-GYN insurance premiums were among the highest in the country, especially in South Florida. NICA claims the program has reduced medical malpractice premiums for obstetricians from what they would otherwise be by between $62,000 and $88,000 a year — and $1,200 to $1,800 annually for all other doctors. An actuarial study of NICA reported by an organization of Florida OB-GYNs in 2015 arrived at a similar conclusion, finding that the program saved obstetricians on average $57,535 a year in the cost of their malpractice insurance.
That said, obstetricians in Miami-Dade and Broward counties still pay among the highest malpractice insurance rates in the nation — higher than doctors in states without a NICA program.
NICA said Florida continues to experience a medical liability crisis because of excessive lawsuits, but that "the situation is unquestionably better than it would have been if not for NICA."
"Having Your Stomach Ripped Out"
R. Fred Lewis both defended and sued insurance companies before then-Gov. Lawton Chiles appointed him in 1998 to the Florida Supreme Court. He and his wife, Judy, also raised a severely disabled child, although one not covered by NICA. He likened learning of his daughter's disabilities "to having your stomach ripped out."
"That pain of not knowing what will happen when you are not around — that is a devastating burden to carry," Lewis said of his now-deceased daughter, Lindsay Marie.
Lewis, now a law professor at Florida Southern College, called the claim that doctors were fleeing the state — the justification for NICA and other lawsuit restrictions — an "absolute lie."
"But if you tell a lie long enough and hard enough, people will believe it," he said.
Far from a loss of obstetrician-gynecologists, the number of Florida OB-GYNs actually grew from 546 in 1975 to 911 in 1983 to 1,047 in 1987, the year before NICA was adopted. That's a 92% increase during a time when Florida's population grew 70%. As of last June, the most recent tally, the number of Florida OB-GYNs hovered around 2,000. NICA administrators, however, say there was "an actual exodus of obstetricians from the state's hospital delivery rooms" before NICA's passage as some chose to limit their practice to gynecological care.
Lewis said NICA was in fact part of a broad-based state and national movement aimed at expelling jurors from the civil negligence system — an effort that sought to minimize compensation for plaintiffs by leaving justice in the hands of administrative judges, who are appointed by the governor and Cabinet and don't answer to voters.
"They are trying to do away with jury trials in the state, and I find it very troubling," he said.
Just Say No
NICA says it is set up to pay families for the treatments and services they need. But an examination of thousands of pages of court records and internal documents found that the answer to many requests is no.
A mother wanted a nurse to care for her child on the school bus. "NICA does not pay for nursing services at the school," the program responded.
A father requested a blender to puree fresh fruits, vegetables and meat for his 5-year-old son's feeding tube. "We need a medical reason why [the child] needs blenderized food rather than baby food which is already pureed and available," an administrator said.
A parent asked for a higher electric bill subsidy during Florida's sweltering summer. "AC is wonderful and we all want it, but it is not medically necessary," the director, Shipley, wrote.
And NICA sometimes rejects a specific request from one family only to approve it for another family later. A case manager told Acebo that NICA could not pay Jasmine's longtime personal nurse while Jasmine was hospitalized with gallstones in May 2016. This past year, the program offered to do exactly that for two other families whose children were hospitalized with COVID-19, calling the pandemic "extraordinary and unprecedented."
In its dispensing of care, NICA typifies much of the state's effort on behalf of Floridians with special or critical health needs: Florida ranks near the bottom for virtually every measure of the state's spending on services for people with disabilities.
"NICA is set up like most insurance companies," said Sean Shaw, who served as the state chief financial officer's consumer advocate from 2008 through 2010. "It's set up to not pay claims."
When deciding which requests to grant as "medically necessary," NICA staff, including those with training in healthcare fields, often defer to Shipley. The executive director, paid $176,900 a year, is a former insurance claims adjuster and is not a doctor.
Hired in 2002 at $118,000 a year, Shipley, who supervises a staff of 16, currently makes $30,000 more than the director of the state Agency for Persons with Disabilities, who heads a department with 2,700 employees.
Though NICA may function like an insurance carrier, some of its practices exist practically nowhere else in the insurance world.
Nearly every time they submit a bill, parents are required to sign "perjury statements" attesting at the risk of criminal prosecution that they are not committing fraud. That includes minor invoices for blood work, medications and travel to doctor appointments.
A mother complained to NICA about the suspicion she endured when trying to get reimbursed for her child's medications: "She spoke for about six minutes straight as to how humiliating it is for her to deal with NICA" and "having to deal with employees who laugh at her and her troubles," a case management log said.
NICA said the perjury statements are a safeguard "to prevent healthcare fraud" after "unfortunate instances of some claimants falsifying documents and misrepresenting payments when seeking reimbursement." The Herald asked the agency for examples of such fraud. NICA said it would not provide specifics.
Trapped in Her Room
By the time she was 2, Jasmine had a permanent feeding tube and a tracheotomy to help her breathe. She constantly cried, and rarely slept, meaning Acebo rarely slept, "awakened by Jasmine's gasping and choking," the family's lawyer wrote at the time. Jasmine required round-the-clock care.
The entire family sacrificed for Jasmine's needs. Jamie's younger daughter and son missed family Thanksgiving dinners and her church's Easter egg hunts. The younger daughter could never play on the school soccer team or be a cheerleader. Her son never got to join the football or basketball teams.
By the time she was 11, Jasmine had a pump for her feeding tube, a pulse oximeter, a tank of concentrated oxygen, a humidifier for her artificial airway, a nebulizer and other equipment paid for mostly by Medicaid.
From the day of Jasmine's acceptance into NICA in June 1993, Acebo said administrators did virtually nothing on her behalf until either she or her daughter's nurse begged them.
By age 11, Jasmine had a pump for her feeding tube, a pulse oximeter, a tank of concentrated oxygen, a humidifier for her artificial airway, a nebulizer and other equipment paid for mostly by Medicaid. The family got a wheelchair-accessible van from NICA to transport Jasmine.
When Jasmine was 13, she, Acebo and her 70-year-old grandmother were living in Acebo's 993-square-foot childhood home in Hollywood, Florida. The hallways and bathroom were too tight for Jasmine's wheelchair, requiring two people to lift her 73-pound frame. She was sponge-bathed in bed, and her hair was washed in the kitchen sink, Acebo wrote in a two-page letter to NICA, pleading for help in August 2002.
"I love my daughter dearly and I am only requesting on her behalf a reasonable solution so that we can improve her quality of life and make her as comfortable as we possibly can make it for her."
Records show NICA paid for a home modification a year later.
Over time, as Jasmine needed more medical equipment, Acebo's electric bill spiked from about $100 per month to $500, she said. Acebo was struggling to hold a job and keep up with her bills. In 2007, the electric company threatened to shut off the power when her unpaid tab rose to $2,099, records show.
NICA paid what was in arrears, then made Acebo pay the program back in twice-monthly $50 installments, records show. In an email to reporters, NICA called the "no-interest loan" a "goodwill gesture beyond the regular support provided to the family." At the same time, NICA caseworkers offered Acebo an electricity offset of $25 per month for future power bills.
It was then that NICA mentioned it could pay Acebo to care for her daughter at home. That was news to Acebo. For the first nine years of Jasmine's life, Acebo said, Medicaid was paying for four hours of in-home nursing care daily, meaning that Acebo became her daughter's de facto nurse the rest of the time, suctioning her artificial airway, filling her gastrostomy tube and managing other medical equipment.
Now she learned that NICA could pay her a minimum-wage salary to stay at home and do those things. It had been that way for years.
Acebo asked about back pay. NICA said no.
Because her daughter needed constant supervision — and Jamie Acebo needed to sleep — Acebo retained in-home nursing. But the nurses she could hire at Medicaid's low reimbursement rates often were unreliable, a common refrain among NICA parents hamstrung by the low payment schedules. In one 2006 instance, NICA's case management log shows she called to report that "the night nurse was sound asleep, the humidifier was empty of water, the machine was very hot and Jasmine was having trouble breathing."
Some of Acebo's greatest frustrations involved getting Jasmine from place to place: Acebo said, and NICA's records largely confirm, that she struggled for years with wheelchairs that were too small for Jasmine's expanding frame, with a stuck wheelchair lift on her van and with the van itself, which constantly broke down.
NICA told reporters it bought Acebo a wheelchair in 1999 and adjusted it in 2001. Jasmine's log noted four years later: "Old chair cannot be made any bigger."
"They kept modifying the same wheelchair," Acebo said. "I'm telling them the wheelchair isn't fitting her properly and they're just sending out mobility companies, and the guy is coming out and saying, 'Look, we can't stretch it out anymore.'"
NICA bought Jasmine a new wheelchair in February 2006, at a cost of $7,751, the log said.
In the ensuing 11 years, Jasmine's muscles and joints stiffened, a common condition among people with cerebral palsy. Her legs gradually drew up, splaying her knees outward — and drawing her feet inward — as if in some cruel, lotus-like pose. It eventually became impossible for Jasmine to fit in the chair, Acebo said. There is no record of Jasmine getting another wheelchair. NICA administrators said they never turned down a request for a new wheelchair, but Acebo said NICA already knew Jasmine's had reached its limit and could no longer be expanded.
Jasmine, who had been taken for long wheelchair strolls around the neighborhood, even trick-or-treating in her previous one, became a captive, Acebo said. "She doesn't go outside anymore. I don't have a way to get her outside," Acebo said she told NICA.
Jasmine's van was a similar story, Acebo said. In July 2002, NICA provided Acebo the modified van. By May 2005, the van's wheelchair lift was broken, and it took nine months for the repairs — authorized and paid for by NICA — to be made, records show. After that, Acebo said the van was frequently inoperable, and it sat in her driveway corroding with rust.
In April 2011, NICA signed over the van's title to Acebo. "NICA will no longer pay repairs or insurance," the log said. Henceforth, the notation added, the program would "pay for ambulance transportation for Jasmine when she needs to go to the doctor's office."
NICA told the Herald that the van "went unused for long periods of time" and that Acebo "did not submit a request for another van." Acebo said the van went unused because it was always broken. She said NICA knew Jasmine was entitled to a new van — or should have known. The handbook says vans will be replaced at "approximately 7 years or 150,000 miles." Acebo's was older than that.
In response to questions from the Herald and ProPublica, NICA said that using ambulance rides instead of replacing the van was "a better fit for meeting the needs of the family, and that the family was pleased with this result." Acebo said she was anything but pleased.
Jasmine's many doctor appointments were now especially challenging, Acebo said. She would call an ambulance or transport service to take Jasmine from her home to her North Miami Beach pediatrician. But the stretcher was too big to fit in the office elevator, and the doctor would descend to the lobby and examine Jasmine there — in front of strangers — or, alternatively, in a storage room.
When Acebo complained to NICA about her daughter being on display, caseworkers suggested she find a doctor who would make house calls, she said. Acebo found a doctor whose office had wider elevators.
One saving grace was that the ambulance rides were Jasmine's sole contact with the outside world: sunlight streaking through the windows, a breezy gust before entering the building, people to watch in their go-to-work clothes. "Then she would come back home and go into that room," Acebo said.
In the fall of 2016, Jasmine developed her first pressure sores during hospitalizations for gallstones. Her doctor prescribed a specialized $900 air mattress to prevent the bedsores from worsening, but Medicaid refused to pay. "I'm not going to have my kid suffer," Acebo wrote to her caseworker, "while Medicaid jerks me around with all this red tape."
Acebo faxed over prescriptions and emailed color photos of her daughter's wounds. Her caseworker replied in a Nov. 17, 2016, email: "Neither physicians orders, nor supplier-prepared statements, nor physician attestations by themselves provide sufficient documentation of medical necessity."
NICA agreed to pay the next week.
Fighting Parents
By strictly defining what medical care is necessary, NICA administrators were able to hold down costs. Asked by a NICA attorney what constitutes medical necessity, one of NICA's pediatric neurology consultants offered this explanation in a 2005 sworn statement: "If it were not administered, there would be a worsening of a patient's medical situation." Parents, trying to give their children the comforts and care that other families take for granted, bristled.
David and Esther Morgan encountered NICA's interpretation of medical necessity in 1997. NICA refused to pay for a TV and VCR so 3-year-old Melinda Morgan, at the time enduring the misery of kidney stones and compression fractures on top of her profound birth injuries, could watch educational videos in her bed and, in the words of her behavioral therapist, "escape the pain and frustration of her physical condition."
Her father appealed and was grilled in a deposition by a lawyer from NICA, who asked him to swear that no one else in the family was watching the TV.
Even with Morgan's assurances, NICA rejected reimbursing the $500 cost of the TV and VCR. The family's conflict with NICA would expand into a years long legal fight over an ever-increasing list of issues, ranging from in-home nursing care to high electric bills to accessibility modifications for the Morgans' home. NICA didn't like the judge's ruling, appealed, then settled in an agreement that remains secret except for the cost of the lawyers: $172,000.
Despite the long slog through the courts, David Morgan still relies on NICA to help with his fragile, now 27-year-old daughter, and he has made his peace with the program.
"NICA has turned out to be a lifesaver. I would be in total bankruptcy if it weren't for NICA."
"The Ills of Pandora's Box"
NICA's legal clash with Flor Carreras over a new therapy that could free her daughter from a lifetime attached to a feeding tube also included administrative hearings, entreaties to an appellate court — and a $2,009 trip to Costa Rica by NICA's then-administrator and a consultant.
Starved of oxygen in the womb, Maria Theodora Carreras was born in February 1989 with severe brain damage — years later, a neurologist wrote, she was still functioning at the "newborn" level — and dysphagia, a disorder that makes it difficult to swallow and causes chronic lung infections and recurring fevers.
Carreras, who could not be reached by the Herald, found hope for Maria Theodora in a Hungary-based doctor who used electrical stimulation of the palate and throat muscles to help children overcome the disorder. Maria Theodora's pediatrician and therapist recommended the therapy. She asked NICA to pay for it.
NICA said no, warning in a legal pleading that approval would "literally unleash the ills of Pandora's Box against the [program's] funds." Carreras took Maria Theodora to Budapest anyway and she then asked an administrative judge to make NICA reimburse her for the treatment and travel expenses.
The judge wrote that Maria Theodora was later able to swallow water from a bottle, as well as bits of banana, mango and peaches. She also had fewer fevers, a stronger cough reflex, and less drooling and wheezing — evidence of decreased aspiration.
Carreras' determination to give her daughter the pleasure of eating would prompt a three-year legal battle — and a trip by NICA's then-administrator, Lynn Larson, and a consultant to the former Miami family's new home in Costa Rica to judge for themselves whether the girl had benefited. In December 1995, a Miami appeals court sided with Carreras, ordering NICA to pay for the treatment — and the litigation.
Larson declined to discuss NICA, citing a nondisclosure agreement she signed when she left the program in 2002.
At a Miami hearing that year, Maria Theodora's pediatrician, Dr. Alberto Saenz Pacheco, accused NICA's attorney of trying to force Carreras to abandon hope that her daughter might someday eat on her own. "You're just condemning her to the tube feeding the rest of her life," he said.
The total bill for Maria Theodora's treatment was $11,058. The fight over it: $80,000 in fees and costs for the family's lawyers, whom NICA ultimately was ordered to pay, and about $44,000 for NICA's own lawyers.
Celia and Curt Lampert's 23-year battle with NICA has so far included three appeals to the Division of Administrative Hearings, a class-action lawsuit and two trips to the First District Court of Appeal in Tallahassee. The family's relationship with their son Tyler's healthcare provider became so antagonistic that NICA twice hired a private investigator to tail them.
The Lamperts declined to discuss Tyler or NICA, but documents detailing the agency's history with the family show NICA administrators were suspicious that the parents were exaggerating Tyler's needs.
In December 2003, Curt Lampert called NICA's claims manager. "He is upset because he feels that we are playing God with his son's health," said the log entry. "He went on to state that he didn't think Kenney [Shipley] or I cared."
After the Lamperts appealed NICA's denials, the program hired a Pompano Beach private investigator to shadow the family, which, by then, was in the process of moving to a suburb of Atlanta. The investigator billed for nine days of surveillance during two weeks in August 2005, including airfare, a hotel, rental car, meals and video, for a total of $10,387.
The investigator reported the quotidian details of Celia Lampert's life: Lampert takes her son to an appointment at Sunshine Therapy. Lampert takes Tyler to Wendy's. Lampert walks her "two small dogs on leashes." Lampert buys dinner at a Burger King drive-thru. Tyler and his mom visit Blockbuster Video. Tyler swims inside his hotel swimming pool and dries himself with a blue towel. Mother and son shop at Target and later eat at Chuck E. Cheese.
Without addressing the Lamperts directly, NICA told the Herald it hired the investigator — the only time it did so — because the program "perceived inconsistencies between a child's medical condition and [the] family's requests related to the child's condition."
The Lamperts' battles with NICA included requests for a wheelchair, as well as a therapy designed to improve the muscle tone in Tyler's arm — which NICA rejected. In an August 2005 order, an administrative judge said that, in denying the wheelchair, NICA "failed to objectively consider Tyler's limitations, and overlooked the testimony" of its own expert — who had said a wheelchair was "appropriate for [Tyler's] use."
A fight over compensation for the Lamperts' caregiving hours prompted more litigation, beginning with a 2006 class-action lawsuit filed on behalf of NICA families by Tampa lawyer David Caldevilla. The suit sought to enforce the law requiring NICA to pay parents for the time they spent as unpaid nurses — even as some of them had been forced to quit their jobs to perform that role.
Fifteen months after the lawsuit's settlement in November 2012, Shipley told the Lamperts they were eligible for up to 12 hours per day of paid caregiving. But the administrator rescinded the offer amid a disagreement over how much care Tyler required and whether the couple was owed back pay.
In 2015, Administrative Judge Barbara Staros ordered NICA to restore the original offer of 12 hours of paid daily caregiving.
In a footnote, Staros weighed in on one of NICA's accusations against Celia Lampert, whose zealous advocacy for her son had so bedeviled NICA.
She wrote: "NICA's characterization of Mrs. Lampert's role in Tyler's [care] as 'over-active involvement and manipulation' is rejected."
Over 11 years, the class-action battle cost NICA $2.8 million, spread among 10 law firms.
NICA was also forced to pay Caldevilla $96,610 in legal fees and costs for representing the Lamperts. NICA has spent $412,986 in legal fees battling with Tyler's family, some of which is included in the $2.8 million. That means, in total, NICA has spent just shy of a half-million dollars in litigation wars with the Lamperts.
"Without Care or Kindness"
NICA administrators and their allies long have maintained that families were satisfied with the program and grateful they were spared the uncertainty and heartache of a protracted malpractice litigation.
"Recipients are seen to be receiving excellent care, and participating families are overwhelmingly satisfied with the level of service, and they support the system," the Florida Obstetric and Gynecologic Society wrote in a February 2007 report.
NICA's own records over the past two decades raise doubts. Around 2001, seven NICA families complained to the state's insurance commissioner. They said Larson, executive director at the time, never disclosed the benefits they were entitled to receive, failed to meet some "covered needs" and showed "favoritism" in dispensing care, minutes of a NICA board meeting say.
Shipley was hired the next year, the program said, and made several changes, including developing NICA's website, producing the program's first benefits handbook and ensuring parents knew about some benefits, such as reimbursement for gas and mileage.
Another round of complaints — this time to lawmakers — prompted a second survey. But this one, completed in 2012, reached a far different conclusion: that most NICA families were happy. The survey noted that many parents wanted NICA to switch to direct deposit for reimbursement and caregiving checks, and that many families found the program's benefits handbook "confusing."
It took seven years after that for NICA to make electronic banking available to families. The agency said the process was time-consuming and required multiple security measures to protect sensitive information.
The two surveys had key differences: About 85% of NICA parents responded to the first survey. Half of the families ignored the second one. And while the first survey was administered by the state insurance commissioner, the second was done by one of NICA's lobbyists, whose firm has been paid more than $440,000 since 2011 to represent the program.
In 2017, the parents of Delaina Parrish — a NICA child who astonished and delighted doctors by graduating from college last year and launching a career despite her physical disabilities — attended a board meeting to urge administrators and board members to "help families." Patricia and Jesse Parrish said NICA staff was "denial-driven," not motivated by compassion, wouldn't publish meeting dates and set arbitrary limits on what they'll pay for.
The Herald asked the Parrishes late last year if the program has improved since then. Patricia Parrish said she is disappointed NICA still has not added a parent to the board, doesn't inform parents of new benefits and won't encourage other parents to attend meetings and offer input.
She said: "Why do they get to play God?"
Though unable to communicate verbally, Delaina Parrish uses a computer that tracks the movement of her eyes and generates words and sentences on a monitor or through an automated voice. The technology was provided by the manufacturer, not NICA.
Now 23, the University of Florida grad has a consulting business and a platform from which to advocate for others with disabilities. She was accepted into NICA when doctors believed it was likely that the 11 minutes she was deprived of oxygen at birth, requiring resuscitation, would impair her mind, as well as her body. But Parrish's intellect is as vibrant as any.
In a recent interview, Parrish said the program looks only at "what is required at the minimum" when deciding whether to help those in its care.
"If we don't have their financial support," she added, "we can't live our best lives."
NICA disputes that administrators don't make families aware of their benefits and options. The program "regularly informs families in advance about care and services that might improve their situation," administrators said.
Delaina Parrish, a NICA child who graduated from the University of Florida last year and launched a career despite her physical disabilities, is able to communicate because of a machine that translates her eye movements into words. The device came from the manufacturer, not NICA.
As an example, the program noted it offered last year to buy $29,000 robotic "exoskeleton" suits to help some children strengthen the muscles in their legs. "NICA staff contacted all families with a child who could benefit from" the technology, NICA said, "and then assisted them with the process to get this new equipment capable of improving their daily lives." Five clients have gotten them so far, NICA said.
The publicist NICA hired to burnish its image urged news organizations to publish stories about the device. Shipley, the executive director, said in an email to the technology's developer that NICA was "looking to do a positive news story" about the equipment.
In the months after NICA hired its media consultant, the program did something it had resisted for most of its 33 years: It considered legislative change.
Once before, lawmakers introduced a bill that would have required NICA to operate with greater transparency and "in a manner that promotes and protects the health and best interests of children" in its care.
That bill, in 2013, required NICA to inform families in writing each year of the "types and full amounts of benefits available from the plan for the injured child's" projected needs. And it proposed adding a NICA parent or guardian, as well as a Florida lawyer, to the board of directors.
That's the legislation that Shipley dismissed as "pretty silly" in a 2013 email to NICA's lobbyists. One board member warned that while the proposals "sound innocuous," they could result in "all sorts of bad law" being forced upon the program. Another board member wrote: "If it's not broken, don't fix it."
The bill died in committee.
Now, with the public relations firm brought into the fold after the Herald submitted a series of public records requests and questions to NICA, the agency is proposing legislation. It would increase the one-time parental award from $100,000 to $250,000. The bill was amended to raise the death benefit from $10,000 to $50,000.
Even if it isn't approved, the proposal could serve a second purpose, one of NICA's publicists noted in a February 2020 internal email: "Making a public announcement about [it] would help greatly to insulate NICA against media criticism."
A Rented Casket
Every year, Jamie Acebo wondered if it would be her daughter's last. Her last birthday. Her final Christmas. The last time hearing her siblings tease each other around the dinner table.
In the spring of 2016, Jasmine was hospitalized with gallstones. Jamie Acebo had other children at home, so she arranged for Jasmine's nurse to work her shift at the hospital, ensuring Jasmine was repositioned and bathed, her airway suctioned, her feeding pump refilled properly.
Acebo and Jasmine's nurses recognized the subtle, nonverbal signs others missed: Jasmine would grind her teeth and bite her lips when she needed medicine for the pain. That was the only way they knew, and could ask for pain medication.
When NICA administrators found out about the NICA-paid nurse deployed to the hospital, they moved to claw back $2,240 from Acebo — money she didn't have.
"We are not required to pay a private professional caregiver during a hospital stay," Shipley wrote.
After an attorney pleaded Acebo's case, Shipley offered to let Acebo repay the money in $25 weekly installments.
In the winter of 2017, Jasmine was hospitalized again with gallstones, and her prognosis wasn't good. Because of Jasmine's fragile state — and her profound disabilities — none of Jasmine's doctors was willing to perform necessary surgery. "Right now it's in the hands of God," Acebo wrote in a Feb. 27, 2017, email to her caseworker. Acebo said she was repeatedly encouraged to sign a "do not resuscitate" order.
Jasmine's mom said, and wrote in emails at the time, that one of the doctors reminded her that Jasmine was "not a productive member of society" and had, in any event, exceeded all expectations by living more than a quarter-century.
"You know, she's had a lot of miracles, and I think hers are just about up," Acebo said she was told by one of Jasmine's doctors.
Acebo's answer: "If God wants her, he's going to have to come and get her, because I'm not signing a DNR."
But as Jasmine's condition worsened, doctors warned Acebo that the stress of reviving her would result in cracked ribs, one more excruciating indignity for a daughter who had endured them all her life.
On March 19, 2017, Acebo signed the DNR. She held Jasmine's hands, stroked her face and whispered, "Mommy loves you."
"You don't have to fight for me no more," Acebo said. "You can go home."
"And, once I said that, the monitors just started to go down."
The last entry in Jasmine's NICA case management log is a payment to a funeral home.
Even in Jasmine's death, Acebo felt betrayed by the program. Acebo was left with a choice: She could afford a funeral, or a burial, but not both.
The $10,000 NICA pays as a death benefit was adopted in 2003, nearly two decades ago. Costs have gone up.
Though Acebo's Baptist faith eschews cremation, it was the only choice she could make — a casket burial was beyond her means, she said. For $3,500, she rented a casket, which was returned after the service. Jasmine was then cremated.
Jasmine's ashes rest in an urn atop the dresser in Acebo's bedroom in her Pembroke Pines home.
NICA administrators told the grieving mom to forget about the remainder of the $25-a-month repayments.
On the day after Jasmine died, Jamie Acebo received an email from NICA. Administrators were mailing Acebo her final paycheck for her time taking care of Jasmine. Total earned: $1,050.00.
But NICA was not yet paying by direct deposit, despite parents clamoring for that in the survey five years earlier. Acebo received her checks by FedEx, and the delivery service costs had piled up. NICA insisted on being reimbursed.
As the winter's surge of coronavirus cases overwhelmed Los Angeles hospitals, EMTs like Michael Diaz were forced to take previously unthinkable measures. What lasting impact will the pandemic have on America's first responders?
This article was published on Wednesday, April 7, 2021 in ProPublica.
It was 4:32 p.m. and Mike Diaz was almost halfway through another punishing 24-hour shift when the call came over the ambulance radio. Nine miles away, a man had lost consciousness. "We're en route from Palmdale Regional," Diaz told the dispatcher, pushing away the thought of grabbing some food, as he flicked on the lights and sirens and sped off into the suburban maze of the Antelope Valley. He had worked as an emergency medical technician here in the northernmost part of Los Angeles County for over a decade, but he still experienced the same thrum of adrenaline on urgent calls. Lately, however, on January afternoons like this one, his excitement was overpowered by a sense of futility and dread.
A few minutes after the dispatcher's call, Diaz backed the ambulance into the driveway of a single-story house with a white picket fence. He and his partner, Alexandra Sanchez, followed a paramedic from the fire department into a dim living room, where an old man was stretched out on a cot, grimacing in pain. As Diaz crouched to check the man's vitals, a middle-aged woman said that she had first noticed her father, who was 88, becoming less coherent around a week ago. The man was more confused than usual, and contractures had stiffened his thin legs into tent poles. Their primary care doctor wasn't picking up the phone. Still, the family held off on dialing 911 because they feared that sending him to the hospital would expose him to the coronavirus. Only now that his condition had worsened had they decided to make the call.
As the daughter spoke, Diaz uttered short affirmative phrases. At 31, he is brawny and compact, with a smooth face, alert eyes and spiky black hair that lends an extra inch to his height. He was used to the brutal rhythms of emergency medicine in the Antelope Valley. The bustling community of 450,000, an hour's drive north of Los Angeles, has only two hospitals and some of the county's poorest and sickest residents. Diaz was overworked and proud of it, driven by the intoxicating rush of saving lives. Even when the 911 system was under strain in the past, he could take for granted that there would be enough resources — supplies, space and staff — to tend to patients. What he lost in sleep and free time he'd always earned back in the satisfaction of helping people. In a job that paid low wages and demanded extreme sacrifice, he'd come to rely on that feeling.
Now he could no longer count on it. The recent explosion in coronavirus cases — an over 900% increase in LA County from November to January — had left the healthcare system on the verge of collapse. In this new climate of scarcity, the more people there were who needed help, the less EMTs could do to help them. Peering down at the pale old man before him, Diaz was gripped by doubts: Could he still call himself a caretaker when he couldn't properly care for his patients?
Ten minutes later, as he swung left into Antelope Valley Hospital, Diaz was dismayed to note the first signs of gridlock: Five ambulances were already parked in the bay. Diaz and Sanchez wheeled their patient toward the back entrance of the emergency department, where they joined a phalanx of other gurneys. A mother and her crying infant. A man whose legs had swollen up like the limbs of a balloon animal. A woman whose wrists were in restraints. She'd spat at the EMTs who'd brought her in and, because they couldn't find a mask, they'd placed a white napkin over her face. "It looks like it's one of those days," Diaz said.
In the alcove beyond the check-in desk, Sanchez and Diaz installed their gurney along a vacant stretch of beige hallway. Before the pandemic, an 88-year-old man in an altered state of consciousness would be attended to fairly quickly to rule out an infection, prior brain injury or stroke. Today, every bed in the ER was occupied, and Diaz and Sanchez had been relegated to the limbo known to EMTs as "the wall." The term refers to the uneasy period of waiting with a patient until a bed becomes available. Even in quieter times, it was common in the Antelope Valley to "hold the wall" a few times a week. But now crews were waiting to offload patients two or three times a day, and the waits kept getting longer. A few weeks earlier, Diaz had been on the wall at Palmdale Regional Medical Center for 14 hours straight. Around Christmas, Sanchez had dropped off a patient only to see the person still waiting for a bed on her next shift, 30 hours later. Someone had etched tick marks onto one of the hospital's corridors, like an imprisoned soldier counting his days in captivity.
Diaz noticed his patient was struggling with a pair of blue gloves. "I'll help you put those on if you want, sir," he said. "Just let me take your temperature." His gestures were attentive, precise.
The glass doors of the ER slid open and another EMT poked her head through to scan the crowd. "It's a party in here," she said, before returning outside to tend to a heavyset man who was shaking uncontrollably.
"Is your pain still a 10 out of 10?" Sanchez, who is 26, asked their patient. She has a radiant complexion and a serene bedside manner.
"I can't hear you," he said. Down the hall, a heart monitor pinged. The infant continued to wail.
"Your pain," she said, raising her voice above the din. When she leaned over him, her ink-black bangs hung above her mask. "Still a 10 out of 10? Is your pain still really bad?"
She couldn't tell if he was nodding in agreement or simply adjusting his head. Either way, there was nothing to do now but wait.
With its flashing lights and whooping siren, the ambulance has become a symbol of a catastrophe that has unfolded largely behind closed doors. At the start of the pandemic, Diaz hoped the elevated profile of EMTs — their "essential" role — might lead to improvements in the way that emergency medical services are run. But so far, nothing had changed. If anything, the situation had gotten worse.
In Los Angeles County, as in many parts of the U.S., for-profit companies operate the ambulance system. The contract for the north part of LA is held by American Medical Response, the largest ambulance company in the nation. Along with paramedics from the fire department, EMTs employed by American Medical Response handle all of the emergency medical calls in this "exclusive operating area," a roughly 1,500-square-mile dominion that includes the cities of Palmdale and Lancaster, a smattering of quarries and aerospace factories, and swaths of the Mojave desert.
Spending as little as possible is crucial for all parties involved. The government, which pays for the majority of ambulance trips in many parts of the country, wants to save money. And AMR, of course, makes more if it keeps costs down. Diaz is particularly attuned to this dynamic: He represents around 350 AMR employees as president of an EMT union's local.
Los Angeles County mandates that ambulances reach patients within 8 minutes and 59 seconds. To meet this deadline while maintaining profit margins, private companies deploy a thin fleet of ambulances, pay low wages (private-sector EMTs in California make 39% less than their public-sector counterparts) and strategically rearrange the vehicles in their command. AMR's software suggests that vehicles "post" near busier areas so they're more likely to encounter transport opportunities. On hectic days, dispatchers maneuver crews around like chess pieces.
"We're not unlike other parts of emergency healthcare — we're very lean," said Tom Wagner, president of AMR's western operations. "When dollars are tight," he said, citing low Medicare reimbursement rates, "decisions have to be made about where we station ambulances, how we station ambulances, and do we move them around more often?"
The wave of coronavirus cases that swept across the country late last year put even the most battle-hardened EMTs under unprecedented psychological strain. "All of the structural shortfalls of our industry were really borne by EMTs and paramedics who were at the patient's side, caring for them without the resources that they needed," said Aarron Reinert, who until recently served as the president of the American Ambulance Association, an industry trade group. Some companies, he said, lost money early in the pandemic when many people were reluctant to go to the hospital; other companies, faced with a surge in cases, ran out of masks, gloves, medications, syringes, vehicle parts. In late November, the association sent a letter to the U.S. Department of Health and Human Services, pleading for more government aid. "The 911 emergency medical system throughout the United States," it stated, "is at a breaking point."
A few days later, in Los Angeles, it broke.
The more critically sick patients dialed 911, the more intensive care unit beds filled up; soon, those ICU patients were overflowing into the emergency room and EMTs had to wait for hours to offload newer patients until others were discharged or died. With so many crews stuck on the wall and several dozen more in quarantine or sickened by the virus, there were fewer and fewer ambulances on the road to handle all the 911 calls, which led to dangerous delays in emergency response times. With each passing day, the situation deteriorated. Hospitals assembled disaster tents and installed mobile morgues. Eventually, dispatchers were making informal triage decisions about where to send the last available ambulance.
To combat this vicious cycle, EMTs like Diaz and Sanchez were forced to do things they'd never done before. They stayed awake for 48 hours at a stretch, piled on extra shifts to cover for sick colleagues, and brokered final goodbyes between patients and their loved ones. To free up ambulances to run other calls, they attended to groups of patients. Some patients on the wall had been passed between so many crews that their latest handlers scarcely knew what they'd come in for. All that mattered was ensuring that the person kept breathing.
High-flow oxygen, sent through the nose, is effectively the only stabilizing treatment that EMTs can administer to people infected with the coronavirus. COVID-19 patients can require 10 times the amount of oxygen of non-COVID-19 patients, and as demand soared, ambulances and hospitals ran through their supply. At the start of January, the county's emergency medical services agency instructed EMTs and paramedics to withhold oxygen from those whose blood oxygen saturation was above 90%. (Typical blood oxygen levels range between 96% and 100%; levels below 90% can be cause for concern.)
Some of Diaz's patients appeared to be suffocating, but so long as their blood oxygen saturation was above the threshold established by the county's much-needed rationing protocols, he had to deny them. People gasped and heaved and moaned. It made him feel like he was watching someone drown.
The rationing was even more upsetting for the patients themselves. They were shocked — rightfully so, Diaz thought — by what was happening. This is America, they told him. This is California. These expressions of disbelief, Diaz observed, were often followed by anger. One of his patients, desperate to see a nurse, called 911 from inside the hospital. Others called him names. He understood their frustration. He was frustrated, too. How could he convince someone whose lungs were filling with fluid that he actually wanted to help them when he was mostly just standing there?
As the sun set on Antelope Valley Hospital, more EMT crews arrived, joining Sanchez and Diaz on the wall. They exchanged mordant greetings.
"Fancy seeing you here!"
"Where have you been all day?"
"Welcome to zero space."
The line of gurneys had spilled beyond the doors of the ER, into the cooling night air. EMTs wrapped their patients in coarse white blankets. Nurses wheeled equipment out onto the pavement to take vitals. Diaz and his colleagues milled about.
As the union leader, Diaz was highly sought after by his fellow EMTs. He made his rounds with the easygoing self-assurance of a man who delights in fixing peoples' problems. One EMT flagged him down to say that he was worried about disciplinary action following a dispute about attendance. Diaz reassured him that the matter would be dropped. Another EMT said she was working overtime to pay her bills after calling out with COVID-19 at the start of January. Diaz told her he'd file a grievance and find out why she hadn't received sick pay. (AMR's policy is to compensate coronavirus-positive workers until they test negative.)
In the sea of crisp navy uniforms, Diaz spotted his buddy Gage Oldenburg, a 24-year-old EMT with a bristly blond mustache. They chatted about the frenetic pace of work. For most of January, there'd been more than 200 coronavirus deaths a day in Los Angeles, the equivalent of one death every seven minutes. No one — not their supervisors, not the fire department chief, not the doctors in the hospital — had ever seen anything like it. EMTs and paramedics already sufferdisproportionately from post-traumatic stress disorder and suicidal ideation. What the effects of the pandemic will be on these first responders in the months to come remains to be seen. "This took an emotional toll that we will probably be seeing for years," said Cathy Chidester, the director of LA County's EMS Agency, which oversees the ambulance system.
Many EMTs are on duty in 24-hour shifts, but before the pandemic, there were plenty of opportunities at the station to nap, decompress or console one another about harrowing calls. On days off, Diaz, Oldenburg and other AMR friends camped on the beach together, watched Lakers games and grabbed mimosas in the early morning after work. Once the rise in hospitalizations put an end to all downtime, though, these bottlenecks at the hospital had become one of the few occasions where crews could process the unfolding disaster. "It used to be that people enjoyed their jobs, even though there were parts they didn't enjoy," Oldenburg said. "Now a lot of people just show up because they feel like they have no other option."
Diaz did his best each shift to keep morale up. He liked to remind his colleagues that they were "on the front lines of the front line." Yet even he'd found himself becoming inured to scenarios that would have been previously unthinkable. He no longer noticed when every patient in the emergency room was intubated. He was indifferent to the high-pitched ring of the alarms that signaled the end of the hospital's oxygen supply. Of course, some detachment was natural, even necessary, in a profession that routinely deals with the worst day in someone else's life. But it wasn't just that he was desensitized; sometimes he had trouble feeling anything at all.
Shortly after 7 p.m., while Sanchez watched their patient inside, Diaz bolted down a beef bowl from a local fast-food chain using the hood of an ambulance as a table. It was his first meal of the shift. He and Sanchez had been running calls — a cardiac arrest, a dirt bike accident, a COVID-19-positive woman with a blood clot in her leg — since 6 a.m. At one point, they'd had to drive through an hour of traffic to cover a station down in Santa Clarita because too many units there were tied up or out sick.
"This is a good day," Diaz said to Chris Canning, a jovial EMT who wore his hair pulled back into a small bun. Diaz was so accustomed to the chaos of the surge that an unscheduled break during a shift of nonstop calls now seemed like a luxury.
In his happiest moments, Diaz would tell himself, "I'll do 30 years and call it." He loved his job. He was good at it. His life as an EMT was more exciting, more significant and more satisfying than anything he had previously done. Why not keep at it for decades?
Some people enter emergency medicine because they've witnessed a paramedic saving the life of an uncle or mother. Or because a relative died before help arrived and the future medic wishes to prevent the same thing from happening to someone else. Others, teenagers just out of high school, drive ambulances before moving on to higher-paying jobs in medicine. An EMT certification is also a prerequisite for joining LA's highly selective fire department.
Diaz did not want to be a firefighter and he had not lost a family member through a catastrophic event. Rather, he had fallen in love. He was interested in a girl who was interested in another guy. The other guy was an EMT. Diaz didn't see why he couldn't do the same thing his rival did, "but better." At the time, Diaz was studying film at California State University, Northridge and working as a projectionist at a movie theater. Between classes and work, he attended a 12-week EMS course and flunked out. "My mind wasn't in the right place," he realized. "And then I was like, wait, why did I fail that?" At first his pride compelled him to try again, but he was soon transfixed by what he was learning about the human body's extraordinary ability to compensate for its injuries and illnesses. Though he eventually lost the girl, he gained a vocation, and, in 2009, at the age of 20, he joined American Medical Response.
The first year of work was so humbling and surprising that he started to tell people that every 18-year-old should spend a year in the front seat of an ambulance. He imagined a compulsory EMT service, like a military draft. It wasn't just that the world needed more EMTs, in his view. It was that he could think of no other job that put one's own life into such sobering perspective.
To be an EMT is to understand a truism that might otherwise seem abstract: Someone, somewhere is always suffering. Once he tuned in to the frequency of disaster, Diaz found that trivial frustrations no longer bothered him. Life's smaller pleasures became more fulfilling. Other people might have been disheartened by such unrelenting proximity to pain, but the knowledge that things could be worse filled Diaz, a relentless optimist, with a profound sense of calm.
As the years went by, however, Diaz noticed that he was working with fewer and fewer of the people he had started with. His colleagues around the station were always asking each other about their next move. Fire? Nursing? Law enforcement? He dreaded these questions, which implied that their current career was lacking. The low pay, long hours and high turnover rate only reinforced this impression. Even his friends who adored the EMT lifestyle, with its sense of purpose and foxhole camaraderie, usually ended up leaving after two or three years. Did it really have to be this way? Diaz wondered. Why couldn't working as an EMT be a sustainable career in itself?
In the summer of 2017, eight years into his tenure, Diaz ran for president of Local 77 of the International Association of EMTs and Paramedics. Wages were a consistent matter of concern. As one of the most senior employees in the area, Diaz's hourly wage is $17.89, while Sanchez, after four years at AMR, earns $15.88 an hour. No one got into EMS for the money, as the saying around the station went. Then again, the industry appeared lucrative for those higher up the food chain than Diaz: AMR is a subsidiary of the $4 billion Global Medical Response, which in turn is controlled by KKR, a $252 billion private equity behemoth. (AMR's Wagner emphasized that hourly rates are established through the collective bargaining agreement. "We are constantly looking at ways to be able to adjust compensation," he said, "because we're only successful if we have people that want do the job and be aboard our team.")
Diaz threw himself into the union cause. If burnout was built into the job, he wanted at the very least "to go down swinging." His response to the pandemic was to push himself even harder. He filled his days off with overtime shifts, filing grievances on behalf of members and recording livestreams on Facebook to address safety concerns. His phone rang throughout the night with colleagues seeking advice. He always picked up.
Everything was urgent. He was needed constantly. He could not stop to rest, to sleep, to eat. His girlfriend called him Zombie Michael. But he insisted he was fine. He was fine. Really.
Until he wasn't. One night in the middle of December, Diaz was walking down the hallway at Palmdale Regional Medical Center, when he noticed that oxygen tubes had been recently taped along the ceiling. The hospital had exhausted its portable tanks, and the new lines were rushing oxygen from exam rooms to the row of rasping patients on the wall.
It was strange, but as he stared at the taped tubes, the image of scarcity elated him. At that moment, he felt that the only hope for transformative change to the healthcare system would be if the absolute worst finally came to pass. He imagined what would happen if 30 more people with COVID-19 flooded through the door. If they quit rationing and just ran through the entire oxygen supply. If hundreds of people died that night.
Diaz began to clap, as though he were cheering on a basketball team. "Let's go," he said, raising his voice. "Let's do it! Let's break the system!" He was strolling down the hall now. "Let's bring more patients in," he said, clapping his hands more forcefully. "Let's put everyone on two more liters. Let's just break it."
His euphoria lasted for just a few seconds. People stared at him quizzically and then moved on. They were used to far greater disturbances than a round of applause.
"It's terrible to think about that," he later said. "It's like I was wishing the worst on people in that moment. But it was more in the realm of wanting things to get better. I hoped this would be the tipping point, because I don't ever want humanity to go through something like this ever again."
The fact that this crumbling system had endured, in spite of all its failures, seemed to him the cruelest fate. "I was telling everyone, 'If we hobble out of this, I quit,'" he said. "And now, we're just hobbling out of this, which is infuriating."
No sooner had Diaz shut the metal door to Station 104 than he heard the familiar ring of a call dropping in over the radio — a two-toned descent, like a drawn-out doorbell. "Ugh," he sighed. "That sucks." He and Sanchez had just returned to the station after finally offloading their 88-year-old patient into a bed at Antelope Valley Hospital. It had taken over two hours, and the jolt of excitement he'd felt earlier that afternoon had long since dissipated.
"Man, this was our first time back in 14 hours," he said.
Diaz had recently switched to this station in Littlerock, a more rural part of the valley known for its fruit orchards and treacherous highway. He'd been working with a different partner at a busier AMR station in Palmdale when he realized he'd had as much as he could take. Clapping in the hallways at the hospital was one sign. Feeling like every problem was the patient's fault was another. He'd also begun to ask himself what he called "Maslow's hierarchy of needs type of questions." Questions, he said, like, "Will I have enough sleep to not negatively affect my home life? Can I eat? Can I use a restroom?" Though the Palmdale station was a five-minute drive from his house, his agitation signaled to him that it was time to relocate to what he'd hoped would be a less relentless outpost. So far, though, his new base had been just as hectic as the old one. The recycling bin overflowed with emptied energy drinks.
Sanchez, who had just slumped into one of the station's La-Z-Boys, rezipped her heavy black boots and trudged over to the receiver. "Can you repeat the precaution?" she asked the dispatcher.
Diaz wriggled into the jacket of his uniform and unfastened the Motorola beeper on his hip. "Possibly COVID?" he read from the green band of screen. "Another COVID-positive. Chest pain, 50-year-old man, elevated heart rate with difficulty breathing."
When Diaz and Sanchez arrived at the address at 8:10 p.m., the road was completely dark, except for the flashing lights on the fire trucks that had showed up moments before them. (Los Angeles County sends both the fire department and an AMR crew to each call.) The patient lived in a converted garage in one of the Valley's less developed neighborhoods, where the low-slung houses were surrounded by desolate stretches of high desert scrub. It was a crowded home, the kind that Diaz had noticed Latino immigrants often shared with several relatives, making social distancing impossible.
A few minutes later, Diaz and Sanchez slid a coughing man into the back of their ambulance as five family members huddled to wave goodbye. Diaz pressed his boot against the gas pedal and told the dispatcher that they were heading to Palmdale Regional.
What he didn't say was that he was hurtling toward an overcrowded emergency room with someone who, in his opinion, didn't need to go there. It's not that his patient wasn't sick: The coronavirus had left the man short of breath and, as Diaz drove, he could hear a succession of quick, dry coughs from a few feet behind him. Still, he didn't think the hospital would be able to do much. The patient was far from needing a ventilator, and with his blood oxygen saturation around 95%, he wasn't eligible for a nasal cannula under the current rationing orders. It was evident to Diaz that what this man needed was to stay put and rest. But by the time Diaz and Sanchez had entered the patient's home, the fire department paramedics were finishing up the paperwork to prepare him for transport.
The situation was exasperating. At the scene, the daughter had explained that her father had already gone to the hospital three times in the previous two days and they kept sending him home. Was it really a good idea to bring him back? Whenever possible, Diaz tried to warn patients that unless they were at imminent risk of death — and if he had time to issue this warning, they likely were not — the hospital might not treat them for hours, even days. Still, it wasn't up to him. EMTs typically handle transport, but the fire department holds the primary medical authority at each call. Again and again, Diaz had seen them abide by a "you call, we haul" mindset. (Dr. Clayton Kazan, the medical director for the LA County Fire Department, said he understands why EMTs and paramedics "are frustrated that they sometimes have to transport people who seem like they really don't need to go to the hospital." But the decision ultimately rests with patients, he noted, and "some of the people who EMTs think don't have to go to hospital really do end up needing to be there.")
The knobbly silhouettes of Joshua trees, lit up by the ambulance's headlights, scrolled by outside the windows. When they approached Palmdale, the arid landscape gave way to a warren of sand-colored strip malls. On rides like this, Diaz wondered, was he helping people feel better or just helping an inefficient system capitalize on people's fears? The majority of people who call 911 do so for non-life-threatening reasons. Nevertheless, EMTs and paramedics have two options at each scene: leave the patient where they are or take them to the ER — and companies can only charge patients when they do the latter. A recent study of the 911 system by the medical directors of the LAFD noted that this business model "creates a perverse incentive in low-acuity cases (and pandemics) to take all patients to a high-cost, inefficient site" — the hospital — "where one might have to wait hours to be seen and possibly even be exposed to others who are sicker."
What happened at the hospital was just what Diaz had expected, just as he had experienced it many times before. Because the patient did not meet the county's new criteria for active monitoring on the wall, Diaz plopped him into a wheelchair and rolled him into the COVID-19-positive section of the waiting room. A scrum of people in pajamas sat on the other side of a plastic curtain. It was the same outcome as if a family member had driven him there. Except for the cost.
Diaz had nine more hours to go, and he could already feel the stirrings of burnout returning: the irritation, the exhaustion, the apathy. But "burnout" didn't capture the extent of his distress. It was as if, Diaz said, he was shrouded by a fog. Or maybe it was the other way around, and the fog had lifted, revealing things as they really were. It reminded him of being at a crowded concert and trying to push past a tangle of bodies toward the exit, only to realize that there was no exit. There wasn't even a door.
A few days later, in early February, Diaz and Sanchez were lying in their sleeping bags in the station's makeshift bedroom area, where five mattresses were pushed up along the walls. Cases had started to decline, and that evening, there'd been a lull in calls. It was one of the first moments they'd had to talk about what had happened to them during the surge.
"I feel like where it really hit me — like, we're not going to get through this for a long time, no matter how much of an effort we put in — was that night in December when I had just come back from having COVID," Sanchez said. "Were you there that night?"
Diaz said he wasn't sure. That might have been a shift he'd swapped to get Christmas off.
"I was still partnered with Kirsten," Sanchez said. "I remember it was one of the first few shifts after I had come back because I was still needing an inhaler nonstop."
That night, she continued, most of the crews had gotten stuck on the wall at Antelope Valley Hospital. There were six or seven COVID-19 patients waiting outside and they all needed high-flow oxygen. Some of them had the lowest blood oxygen saturations she'd ever seen. On 15 liters of high-flow oxygen, her patient's saturation was only around 84% or 85%. They'd been tearing through the portable tanks every half hour or so, far more quickly than they could be replaced. At one point, she and a few other EMTs opened the metal doors of the storage unit outside the ambulance entrance to the ER and saw that only four tanks of oxygen remained. The charge nurse had already told them that whatever was in there was all that was left, but they knew there were still six patients — or maybe it was seven by now — who each needed a tank to keep breathing. She locked eyes with a colleague, snatched a container for her patient, and hurried away. (A hospital spokesperson said the facility did not run out of oxygen; Wagner acknowledged running low but said AMR is "unaware of any ambulance running out of oxygen.")
"We were literally watching patients on the verge of coding" — dying — "because there was nothing we could do," Sanchez said. Although she often thought about this night, she never knew how many of the patients survived. Like many EMTs, she hated to ask the nurses afterward. It was a self-protective measure: out of sight, out of mind.
By the time she picked up another patient, an elderly man, later that night, she'd gone and grabbed one last portable tank of oxygen from the ambulance station. The man's saturation was around 70%, and she could hear the rales in his breathing. It was a bubbling noise, like the sound of air blown through a straw in a glass of water. After the tank ran out, she tried to console him: "I'm sorry there's nothing I can do. You just have to wait a little longer." But he couldn't understand her. For three hours, he kept repeating the only word he knew in English: "Please."
"That was the point where I'm literally in the hallway just looking around," Sanchez went on. "And everywhere you looked it was a disaster. You have the line of patients out the door, still being checked in. And then you hear the frickin' alarms going off because the hospital is out of oxygen. And the nurses running around. I mean, they're always running around, but you could tell they're on a whole other level of overwhelmed."
"Yeah," Diaz nodded.
"It's crazy because you look at your patient and any other day this patient would be a priority, you know? But it's just that everyone else is in the same scenario. You couldn't even say, 'Oh shit, I'm going to panic.' You just kind of—"
"—shut it out," Diaz interjected. "It was weird."
"Yeah, you're just watching it happen," Sanchez said, her voice quiet.
"It's almost existential," he said. "Like a disconnected, third-person experience."
Diaz shifted in his sleeping bag. "I remember there was this weird day in like mid-December where I went on this hysterical spree," he said, recalling the evening at Palmdale hospital when he'd briefly hoped for the worst. "I started thinking this was all funny, and that the whole system just needed to collapse. I'm almost mad that it's started tapering off. How can we go to this edge and it doesn't collapse? People are going to forget about it in a year, and we're going to be right back to the same place where our system still sucks."
Sanchez tried not to think about the future. Until now, she hadn't had the time to focus on anything other than the immediate needs of patients.
"Usually after you have a bad call, like one with a kid, you can cry if you need to and process those feelings," she said. "But I feel like I never addressed that part of it with these types of calls. I'm sure it's building up."
"It'll probably result in some PTSD later or something," Diaz said, laughing.
Sanchez smiled sardonically. "Yeah, but that's not today's issue."
"That's how it is, and that's very EMS, that way of thinking about things," he said. "Like, 'Don't worry about something until you have to worry about it.' It's almost in our training: 'Don't get too ahead of yourself, because doing that will not allow you to be in the moment to help other people.' So it's, like, ingrained in us to—"
As Diaz spoke, the pager on his hip began to vibrate. Then the loudspeaker chimed.
Another call.
They sat up, pulled on their boots, and walked back to their ambulance.
About this story: Ava Kofman spent three weeks reporting in person with EMTs in Los Angeles for this article. She either witnessed the scenes described here or gathered the details, including participants' thoughts at the time, from interviews with those participants.
It's been nearly two years since Rhode Island lawmakers approved funding to train all 911 call takers to provide CPR instructions over the phone, but new data shows no improvement in people's chances of receiving CPR in the critical minutes prior to the arrival of first responders.
Only about one in five people who went into cardiac arrest in their homes or someplace other than a hospital or healthcare setting in Rhode Island last year received CPR before police, fire or emergency medical providers showed up, according to data provided to The Public's Radio by the state Department of Health. The state's bystander CPR rate has remained between 19% and 21% since 2018.
"The needle hasn't really moved," said Jason Rhodes, the health department's chief of emergency medical services.
For people who go into cardiac arrest, getting CPR during the first few minutes can mean the difference between life and death. Every minute of delay in performing CPR on people in cardiac arrest decreases their chances of survival by as much as 10%, according to the American Heart Association.
Rhode Island's bystander CPR rate is less than half the national average, according to the nonprofit Cardiac Arrest Registry to Enhance Survival, which collects data on regions that encompass about 40% of the nation's population. (Rhode Island does not participate in CARES but models its data collection on it.) Rhode Island's survival rate for out-of-hospital cardiac arrests also remains well below the national average.
Rhode Island's 911 system was the subject of a 2019 investigation by The Public's Radio and ProPublica that raised questions about whether the lack of training for the state's 911 call takers was costing lives. Among the findings: a 6-month-old baby in Warwick died in 2018 after a 911 call taker gave incorrect CPR instructions to the family.
But Rhode Island's lack of progress is not for lack of trying. The state had to replace its aging computer-aided dispatch system before the 911 center could install the software that would guide its call takers to deliver the appropriate medical instructions.
"I'm becoming a little bit despondent at this point," said Dr. Joseph Lauro, an emergency room physician and member of the Rhode Island chapter of the American College of Emergency Physicians, which helped lead the push to improve training. "All those efforts and nothing has happened."
In June 2019, Rhode Island lawmakers earmarked $220,000 in the state's budget for the 2020 fiscal year, for training and software that would enable 911 call takers to deliver CPR instructions and other medical assistance by phone.
It was expected to be up and running more than a year ago. But Rhode Island's EMD training began just last month.
Emergency medical calls in every other New England state are handled by people certified in emergency medical dispatch, or EMD.
"We're frustrated, too," about the delays, said J. David Smith, director of the 911 center. But he said the extra time was needed to buy and install a new $1.2 million computer-aided dispatch system so the new software can operate properly. "So that when we finally do this," he said, "it's going to be the best it can be."
The training includes following carefully scripted instructions to talk a caller or bystander through performing CPR. The system is used in Washington state's King County, home to Seattle, a national model for prehospital cardiac care. More than 75% of people in King County who experienced out-of-hospital cardiac arrests in 2020 received bystander CPR.
The new software program also will enable the Rhode Island State Police, which oversees the 911 center, to collect data and track its performance in handling 911 calls. Priority Dispatch, a company based in Salt Lake City, Utah, is providing the software and training under a state contract signed in August 2019 for about $150,000, Smith said.
The center is currently completing training for all 911 call takers and supervisors on the new computer-aided dispatch system, Smith said, and vetting the EMD protocols with state health officials. He said the new system is expected to launch in June. Legislation has been introduced in the General Assembly to mandate that all 911 call takers be certified in EMD, which includes being trained to provide CPR instructions over the phone. A bill (H 5629) introduced by Rep. Mia Ackerman, D-Cumberland, the House deputy majority whip, would require that at least one 911 call taker trained in what's known as telephone CPR be on duty at all times. A companion Senate bill (S 0385) has been introduced by Sen. Maryellen Goodwin, D-Providence.
At a March 30 committee hearing on the House bill, Lauro, the emergency medicine physician, said that as medical director for several EMS departments he reviews cases of cardiac arrest patients treated by emergency medical personnel. "One of the most common things that I find in out-of-hospital cardiac arrest is lack of bystander CPR," he said.
Dr. Catherine Cummings, president of the Rhode Island Medical Society, said most Rhode Islanders assume that 911 callers routinely receive CPR instructions over the phone, and "are surprised to find out that it doesn't" happen.
Ackerman said the legislation would ensure that 911 call takers continue to receive the training required for them to maintain their EMD certifications. "The law is the only way to assure that it will happen," she said. "It's that simple."
A similar bill she introduced in March 2019 did not make it out of committee.
New Mexico limits the information it collects on neonatal centers. That makes it incredibly challenging to get reliable data, sort out what's wrong and figure out how to fix it.
This article was published on Monday, April 5, 2021 in ProPublica.
It’s not unusual for health care reporters to get out-of-the-blue calls or emails from people in the industry. But when three clinicians from Albuquerque hospitals reached out to me to share concerns about the state’s largest for-profit maternity hospital, Lovelace Women’s, I took note.
Two of the tipsters worked at Lovelace. None knew the others had contacted me, but all three had concerns about how Lovelace cared for its most premature babies.
These delicate preemies are frequently born weighing less than 2 pounds. Their immature lungs are not ready for life outside the womb. Their intestines cannot handle normal feedings and are prone to inflammation, tears and life-threatening infections.
In recent years, most preemies transferred to the University of New Mexico Hospital for emergency intestinal surgery had come from Lovelace, one tipster said. (UNM is home to the state’s only level 4 regional referral NICU.) These babies had advanced cases of necrotizing enterocolitis, or NEC, that clinician said. An inflammatory disorder of the intestines, NEC is a leading cause of death among the smallest newborns.
Throughout 2020, I interviewed dozens of people: Albuquerque NICU clinicians, newborn transport team paramedics and nurses, hospital officials, state Health Department and Medicaid program staff, and nationally recognized NICU experts. I contacted other current and former Lovelace clinicians, some of whom echoed the tipsters’ concerns. I sought New Mexico Health Department hospital inspection reports and regulators’ emails about neonatal hospital care.
But to evaluate the clinicians’ concerns, I also needed data. Hospital data can be used to assess trends and details that no one health care worker is likely to detect. Data can help a reporter determine if a patient’s experience is typical or an aberration.
In this case, hospital transfers would show whether a disproportionate number of NEC transfers to UNM really came from Lovelace. Diagnostic data would, I hoped, reveal how common those infections were at Lovelace. And if I could get data on death rates, I could compare it to the numbers for a similar hospital in the area.
My problem: Getting reliable data about individual hospitals’ patients and outcomes in New Mexico is incredibly challenging.
First, I obtained data on hospital transfers: the UNM neonatal medical transport team’s logs and the state Health Department’s emergency medical services tracking system database. UNM and the Health Department are each supposed to document hospital patient transfers, like babies sent from Lovelace to UNM for surgery. I hoped these would provide a window into how frequently Lovelace and Presbyterian Hospital, Albuquerque’s only level 3 NICU hospitals, had medical emergencies demanding a higher level of care. (Level 3 NICUs are supposed to be able to provide sustained, expert care for even the smallest preemies and medically complex babies.)
But the state’s EMS database turned out to be incomplete. For years, air and ground ambulance services simply hadn’t filed reports and the state hadn’t forced the issue. And the UNM neonatal transport team’s service logs only went back a couple of years.
I requested a copy of the intake log from UNM’s NICU, which was available because UNM is a public institution subject to the state’s public records act. The log is reported to the Vermont Oxford Network, an international NICU research collaborative to which UNM, Lovelace and Presbyterian all belong. The network would not share member hospitals’ newborn outcomes. But having UNM’s intake logs meant I could look for patterns in emergency newborn transfers from Lovelace and Presbyterian.
I also requested autopsy records, hoping to identify patterns in newborn deaths at Lovelace and Presbyterian. But I learned that few autopsies are done for newborns at either hospital. Autopsies cost thousands of dollars, and grieving parents, rather than hospitals, pay for them.
For several months in the spring and summer, I was occupied with COVID-19 reporting. But by August and September I was looking into Health Department databases that contain information about births and each patient’s diagnosis, treatment and outcome at all of the state’s hospitals except for those operated by the federal government.
Reporters in some states can obtain patient-level hospital records that have been stripped of patient-identifying details but that name individual hospitals. Such records link each patient with details like sex, year of care, diagnoses, treatments, the hospital where they were treated, and whether the patient was discharged home, transferred to another hospital or died. That kind of data allows for complex statistical analyses of hospitals’ patient populations and outcomes, and it could help determine if one hospital’s patient population was higher risk than another’s, which could lead to worse outcomes even if both hospitals delivered the same level of care.
But due to New Mexico laws like the Health Information System Act, the state publicly releases only aggregate data to protect patient privacy — counts, basically, of patients whose hospital records contained mention of a particular diagnosis or medical procedure. Patient-level data is exempt from disclosure under the state’s public records law. That limited my ability to do the sophisticated analyses that patient-level data sets allow. (Patient-level data can be purchased for thousands of dollars from the federal government, but data for recent years is not included.) And because of a change in diagnostic and billing codes in 2015, data from that year is difficult to interpret and to compare to data from other years.
When I submitted my initial data request, Health Department officials said the state had a longstanding practice of not disclosing individual hospitals’ data.
But when I read the state law, I could find no specific prohibition against disclosing hospital names; the state has discretion over when to release aggregate data for research purposes. So I asked state health officials about their practice of not disclosing data for named hospitals, emphasizing that I wanted the data to report on a pressing matter of public interest. I promised I wouldn’t use it to try to identify individual patients.
To my surprise, the Health Department reviewed and reversed its practice. It provided detailed aggregate data from two databases — a hospital patient database and a birth- and death-certificate database — for Albuquerque’s NICU hospitals. In a Zoom meeting, epidemiologists patiently fielded my questions.
The Health Department data was very useful but far from perfect. Because the state doesn’t monitor neonatal admissions or outcomes, hospitals’ NICU and newborn data is not audited for quality. The hospital patient database has gaps that complicated any analysis of extremely preterm babies’ outcomes. For example, it includes newborns’ birth weights, but not how premature they were at birth. And hospital patient data on babies’ NICU admissions isn’t linked to other details about babies’ health or medical procedures. Hospital-wide counts of babies with particular diseases were provided, but hospitals don’t always report them properly. For example, UNM’s intake log showed Lovelace transferring even more babies to UNM for NEC surgery than it had reported diagnosing with NEC in the first place. That meant I couldn’t rely on the data Lovelace had reported to the patient database.
Lovelace and Presbyterian officials initially said they would share their newborn NEC and transfer statistics but did not do so. Lovelace did not respond to many of my questions but defended its track record of neonatal intensive care. Lovelace Vice President for Marketing Serena Pettes claimed that for all NICU-admitted newborns — including both lower-risk full-term babies and premature babies — Lovelace’s neonatal death rate is “significantly lower than the national average” and has declined over time. “As a whole, our mortality rate is less than half of the national NICU average.”
Birth and death certificate submissions to the Health Department’s vital records bureau are supposed to include details of maternal medical history, labor and delivery, and medical care for the newborn, including whether they were admitted to the NICU. But reviewing data for extremely preterm babies, New Mexico In Depth and ProPublica found evidence that data is also incomplete for key variables, like congenital birth defects and NICU admissions. This meant I could not determine if the number of babies with major birth defects at each hospital, for example, might explain their different death rates.
But the Health Department’s vital statistics data — the information reported to the state by the hospitals for each live birth and newborn death — did allow me to calculate Lovelace’s and Presbyterian’s hospital-wide death rates for extremely preterm and extremely low birth-weight newborns. As the clinicians had suspected, Lovelace’s death rates for these babies were markedly higher than Presbyterian’s. (There was no such disparity in the death rates of babies born at later gestational ages or higher birth weights.) And UNM’s intake records confirmed that more Lovelace babies were transferred to UNM with NEC, including extremely preterm babies.
On March 12, weeks before New Mexico In Depth and ProPublica published stories describing the analysis, Lovelace distributed a memo to employees giving talking points about my reporting. It described the findings as “using statistics to create a narrative that is not supported by accurate data.” They’d said the exact same thing to me earlier in the month. I’d asked the Lovelace spokesperson then if that meant the hospital had submitted inaccurate information to the state. She did not reply.
While the data bolstered the tipsters’ concerns, the reasons why Lovelace’s extremely preterm babies die and are transferred to UNM at a higher rate than Presbyterian’s babies remains elusive.
Such disparities can reflect differences in clinical practices or in how sick patients are, or both. Without more complete patient-level data — or an independent, on-site review of the hospital’s patient records — understanding the causes of the disparity is impossible, experts said.
This points to another key finding from my investigation: New Mexico does not have the regulatory tools to sort out what’s wrong or how to fix it.
Vaccinations for the coronavirus are supposed to be free and available to all Americans regardless of insurance or immigration status. For some, that isn’t how it has been playing out. Here are common false barriers to look out for.
This article was published on Thursday, April 1, 2021 in ProPublica.
As the United States seeks to end its coronavirus crisis and outrun variants, public health officials recognize it is essential for as many people as possible to get vaccinated. Making that easy is a major part of the plan. According to the Coronavirus Aid, Relief, and Economic Security Act, the vaccine is supposed to be free to everyone, whether they’re insured or not. And the Biden administration has directed all vaccination sites to accept undocumented immigrants as a “moral and public health imperative.” But this promise has not always been fulfilled, ProPublica has found.
At vaccination sites around the country, people have been turned away after being asked for documentation that they shouldn’t need to provide, or asked to pay when they owed nothing.
In part, this has happened as businesses administering the vaccine try to recoup administrative fees they are allowed to charge to the government and private insurers. To aid them in passing along the bill, major pharmacies ask those being vaccinated for their Social Security numbers and insurance information. They aren’t supposed to deny a shot to people who aren’t covered or try to make them pay the fees. But both of those things have happened.
Workers at vaccine sites have also turned away people who they felt didn’t provide sufficient proof that they belonged to an eligible group, demanding to see medical records or other evidence of underlying conditions. While the vast majority of states don’t require such documentation, government officials haven’t always communicated that clearly.
The resulting barriers can be higher for those less equipped to advocate for themselves, such as undocumented people and those who do not speak English. Because of this, even as vaccines have become more widely available, they are still not easy for some of the most vulnerable people to access.
This is part two ofa series documenting barriers to access to COVID-19 vaccines. If you or your family members are experiencing difficulty getting a COVID-19 vaccine, or if you design vaccination plans and can share solutions or challenges related to fair distribution, please fill outour questionnaire. If you prefer to call or text, you can get in touch at 202-681-0779 in English or Spanish.
You Do Not Need a Social Security Number or Insurance to Get a Free COVID Vaccine. Your Immigration Status Does Not Matter, Either.
Camille lives in Baltimore with her 77-year-old mother. (She asked to be identified only by her first name for privacy reasons.) When a nonprofit organization helped her mother get a vaccination appointment an hour away in College Park, Maryland, Camille took time off from work to drive her there. They’d only brought along her mother’s state ID card. But when they went up to the counter at the CVS pharmacy, an employee asked for insurance information and a Social Security number. Camille’s mother, who is from Togo and is seeking asylum in the United States, doesn’t have either of those. Camille said the employee told her they’d have to pay if they wanted a vaccine.
No one is supposed to be charged for the COVID-19 vaccine, according to the CARES Act, and immigration status shouldn’t affect eligibility. Many vaccination sites ask for insurance and Social Security information so they can charge administrative fees to insurance companies or the federal government, but those aren’t requirements for being able to get vaccinated.
Camille told the CVS employee she wasn’t going to pay for a vaccine. Her mother, a French speaker who takes weekly English lessons, needed Camille to translate what was happening. “I felt so embarrassed, and my mom also when I was explaining to her,” she said. “She was like, ‘I’m not going to have it because of insurance?’”
Not wanting to drive an hour back without the vaccine, Camille called Tiffany Nelms, executive director of the Baltimore-based nonprofit Asylee Women Enterprise, which had set up the appointment for them. When Nelms asked the CVS employee why they were having trouble getting a vaccine without a Social Security number, the employee “quickly backpedaled,” Nelms said. The staffer told Nelms a supervisor would override the CVS computer system’s request for an insurance or Social Security number.
Nelms said she’s worried about others who have less access to support. “Not everyone has a bilingual relative to go with them who is even comfortable advocating in that way and also has an advocate that’s a phone call away,” Nelms said. “A lot of our clients, especially those who don’t have legal status yet, if they were asked a question like that, they would just leave.”
Camille said she’s thankful her mother got the one-dose Johnson & Johnson vaccine so they don’t have to go back to the CVS for a second shot.
“We are aware of these isolated incidents in Maryland and are committed to addressing inequities related to COVID-19 vaccine access in vulnerable communities, with a particular focus on Black and Hispanic populations,” a spokesperson for CVS said in a written statement regarding Camille’s experience and two other incidents that took place at Maryland CVS locations. “No patient, whether they are insured or uninsured, has been charged directly for a COVID-19 vaccine. If a patient does not have insurance, we are required by the Health Resources and Services Administration to ask the patient to provide either a Social Security number or valid driver’s license/state ID #. However, uninsured patients are not required to provide this information in order to receive a vaccine from us.”
Vaccination sites’ arbitrary documentation requirements have been a barrier for other Marylanders trying to get vaccinated as well. Several Montgomery County public school teachers formed Vaccine Hunters-Las Caza Vacunas to help find appointments for eligible Marylanders. In March, eight of their clients were initially denied vaccines when they showed up for appointments. Most were told they needed documentation that isn’t required by the state. All of them were immigrants, and most eventually got the vaccine after contacting someone from the group to advocate on their behalf.
In one incident Vaccine Hunters volunteers said they intervened in, a woman arrived for her appointment at a CVS in White Plains, Maryland, and presented her ID, a Salvadoran passport. She was told she would need an insurance card or Social Security number, which she does not have. In another, a woman who primarily speaks Spanish was initially turned away by a College Park CVS because she couldn’t respond when asked, in English, to identify her eligibility category.
The group’s volunteers have received complaints from local residents who were turned away for other reasons as well. At a Giant grocery store in Hyattsville, two Latina pastors were initially turned away because they did not have a letter from their employer, even though they brought W-2 forms proving their employment status.
“A COVID-19 vaccine provider may not refuse an individual a vaccine based on their citizenship or immigration status,” said Charles Gischlar, deputy director of communications for the Maryland Department of Health. However, Gischlar said, Maryland vaccine providers are required to take “reasonable steps” to determine whether someone is actually in a priority group: “A COVID-19 vaccine provider may require additional documentation or employee identification and may require that organizations submit institutional plans with identified individuals.”
A spokesperson for Giant Food said that its stores check patient information from their IDs or letters from their employers to identify who is being vaccinated and report demographics back to the Centers for Disease Control and Prevention. “Our goal is to assist in getting people immunized, not to police the vaccine by any means,” communications and community relations manager Daniel Wolk said. “As you can imagine, guidance from the state legislators and the Department of Health changes daily. We do our best to effectively communicate these changes to our over 400 pharmacists via email and weekly calls.”
Across the country in the Mission Hills neighborhood of Los Angeles, Rite Aid turned away a woman on March 14 after asking her to provide a Social Security number and a U.S.-issued ID, which she does not have. She had brought her consular ID, which Los Angeles County sites are supposed to accept for vaccination appointments.
“After being on a waitlist for a week, my mom was turned away because she has no social security and because she is UNDOCUMENTED,” her son Sebastian Araujo wrote on Instagram, adding on Twitter, “My mom was literally sobbing and I’m literally appalled.” After Araujo shared the incident on social media, Rite Aid responded to him on Twitter with an apology and reached out to reschedule a time to vaccinate his mother.
A Rite Aid spokesperson said the company advises its employees not to turn anyone away from a vaccine appointment, regardless of whether they have an ID, Social Security number or insurance. “This was an isolated incident, was a mistake and did not have anything to do with immigration status,” said Rite Aid public relations director Chris Savarese. “The store staff and regional teams have been retrained on our policy to not turn anyone away.”
A week after the Los Angeles incident, a Rite Aid in Orange County, California denied the vaccine to another woman who did not have a Social Security card or insurance, though she had brought her out-of-state ID and a letter from her employer.
At first, Araujo said, he was hesitant to post publicly about his mother’s experience because of the hateful comments he anticipated facing online. “But I think raising awareness is very, very important,” Araujo said in an interview with ProPublica. “If we would’ve just stayed quiet, honestly, nothing would have happened. Rite Aid probably would have continued rejecting people and LA County would’ve never brought this issue into a conversation.”
After Araujo and local media outlets publicized the incident, Los Angeles County officials spoke out and posted on social media to emphasize that proof of citizenship is not required to get a vaccine.
A COVID Vaccine Should Never Cost You Money — Ever. It’s the Law.
While the CDC has made it clear that vaccine providers should not charge patients anything, including administrative fees or copays, some patients have still received bills for the COVID-19 vaccine.
The day after Rosanne Dombek, 85, received her second shot at InterMed, a primary care practice in Maine, she opened her mail and found a bill. For “Covid-19 Pfizer Admin, 1st dose,” her charge was $71.01. “If your outstanding balance becomes 120 days past due, the balance will be transferred to the Thomas Agency for further collection action,” the bottom of the bill said. “It sounded rather final,” said Dombek, who is the mother of Lynn Dombek, ProPublica’s research editor. She immediately wrote out a check. “I was surprised to get the bill, but I’m old enough now that I don’t want any more battles.”
When asked about Dombek’s bill, InterMed spokesperson John Lamb first said that the $71 should have been billed to the patient’s insurance company, and that “the correspondence you referenced is likely a request for insurance information.” When shown a copy of Dombek’s bill, which did not include any such request, Lamb responded, “The statement should have included a notice to call us with her insurance information. We’re looking into why that was missing.” Yet InterMed’s website seemed to indicate that the bill was intentional. In its coronavirus FAQ section, the site said:
“The COVID vaccine will be provided to patients at no cost. However, there will be a vaccine administration fee charged to the patient.” When ProPublica questioned InterMed about this language, Lamb responded, “Good catch. It was confusing. We’ve corrected it to reflect the billing to the insurance provider.” The website was subsequently updated. Dombek did not end up mailing her check to InterMed. Some residents in New Mexico have also reported receiving bills after getting vaccinated. It’s unclear how the CDC or its parent agency, the Department of Health and Human Services, aims to prevent patients from being billed. A CDC spokesperson noted that individuals can call an HHS hotline to report any billing-related violations, but referred oversight questions to HHS. HHS didn’t respond to requests for comment.
Fear of potential bills has kept others from getting vaccinated to begin with. Nancy Largo of Bellport, New York, doesn’t have insurance, already carries about $7,000 in medical debt and has been out of work for almost two years because of a workplace injury. She knows the vaccine is supposed to be free, but she’s still worried. “What happens if they charge me?” Largo asked in Spanish.
Largo doesn’t speak English, and medical providers don’t always have Spanish-speaking staff, so she’s not confident that she'll be able to ask questions about billing and other details once she gets to a vaccination site.
Though nearby pharmacies are offering the vaccine, Largo is limiting herself to finding a shot through one clinic that she knows treats people without insurance and has Spanish-speaking staff. So far, they haven’t had an appointment for her.
In Nearly Every State, Providers Are Required to Believe What You Say About Underlying Conditions.
Sara Waldecker was worried about how she could prove that she was a high-risk patient eligible for a COVID-19 shot. Michigan had just opened up vaccinations to anyone ages 16 and up with disabilities or medical conditions that qualified. Waldecker, 37, said that a childhood illness left her with lung scarring and asthma, but she wasn’t sure how to get hold of those medical records because “the primary doctor I saw, up to five years ago, has died.” After that, Waldecker switched hospital systems, and her old records didn’t transfer with her. Then Waldecker’s husband lost his job during the pandemic, leaving them without health insurance. She said she couldn’t afford to see a doctor and have tests run to get diagnosed again. She’d spent the entirety of the pandemic isolated, buffeted by conflicted emotions. “If I catch it, there’s an overwhelming chance I’m not going to make it, but I also feel guilt from keeping my kid from her favorite places,” she said. “She’s healthy, the rest of my family is healthy — I’m the weak link. I’m the one keeping them in isolation.” In fact, Waldecker didn’t need to prove anything. In Michigan, “individuals attest to any medical conditions upon registration,” according to Lynn Sutfin, public information officer for the state’s
Department of Health and Human Services. “They do not need to provide proof.” That information is not evident on the state health department’s website, nor is it clear on the website of the health department for Macomb County, where Waldecker lives.
ProPublica surveyed all 50 states and found that, among those currently providing vaccines to individuals with underlying health conditions, almost all only require a patient to self-attest that they meet the criteria, and do not require any documentation or proof. Florida is one exception. It limits eligibility to “persons determined to be extremely vulnerable by a physician” and provides a form for doctors to fill out.
In Delaware, health providers and hospital systems are the only places where patients with health conditions can get a vaccine. “Delaware health providers, including hospitals, have been advised to use their clinical judgement to vaccinate individuals 16-64 with underlying health conditions, as they will have access to the patient’s medical information,” state public health department spokesperson Robin Bryson wrote in an email. Even in states that only require an attestation of someone’s underlying condition, that information was hard to find on state websites. Many did not mention it at all, and ProPublica was only able to learn about it by contacting press offices.
Whatever a state says, however, specific vaccination sites may sometimes ignore official guidelines. When Ric Galvan, 20, went to the Alamodome stadium in San Antonio, Texas, for his shot on March 2, he recalled, he was questioned by a firefighter who was helping with intake: “He first sort of condescendingly asked, ‘How old are you, buddy?’ — likely because I’m young.” Galvan provided his ID and stated that he had chronic asthma. “He then asked if I had an inhaler or some sort of proof of having asthma, to which I said, ‘No, not with me.’ He then told me that the vaccine is only for ‘real asthmatics’ who ‘need their inhaler with them at all times.’”“As someone who has been under pulmonologist care since I was 4 years old, this really upset me,” Galvan said. He tried to push back, telling the firefighter that none of the confirmation emails said anything about medical proof, but the firefighter told him to leave the site. A full-time student who also works part time, Galvan added that he was frustrated because it had been so hard to get an appointment in the first place, and now he had to start over again.
“We must ensure individuals that have registered do in fact meet the criteria set by the state of 1A and 1B. This process entails verification of name, age, and if under 65, qualified pre-existing conditions,” replied Michelle Vigil, a spokesperson for the city of San Antonio. “Unfortunately we have seen instances where these conditions cannot be verified. In order to ensure that we are in compliance we have had to turn a very small number of people away.”
But Texas sites aren’t supposed to ask for proof of underlying medical conditions, according to Douglas Loveday, spokesperson for Texas’ health department. People seeking vaccinations “can self-disclose their qualifying medical condition,” he said. “They do not need to provide documents to prove that they qualify.”
Juany Torres, a community organizer and advocate in San Antonio, said she’s heard of several similar cases at the Alamodome.“Some undocoumented folks that showed up were questioned about their diabetes or their asthma, and they were turned away and lost their appointment,” Torres said. They had been diagnosed in their home country and didn’t have their medical records on hand, she said. None have health insurance or a primary care doctor in the U.S. “They lost the time they had taken off work, they were embarrassed, and I had to re-convince them that they were worthy to go and that they should get their shot,” she said. In Texas, at least, requests for medical documentation should no longer be an issue: On March 29, the state transitioned to allow everyone age 16 and older to sign up for a vaccine.
According to internal government statistics and interviews with former officials, legal observers, advocates and congressional staff, those decisions came weeks or months after the first warning signs late last year that the number of unaccompanied minors crossing the southern U.S. border was rapidly increasing, forcing a scramble to set up facilities in a matter of days.
This article was published on Thursday, April 1, 2021 in ProPublica.
The startling images have appeared in one news report after another: children packed into overcrowded, unsafe Border Patrol facilities because there was nowhere else to put them. As of March 30, over 5,000 children were being held in Border Patrol custody, including more than 600 in each of two units in Donna, Texas, that were supposed to hold no more than 32 apiece under COVID-19 protocols.
But as the Biden administration’s Department of Health and Human Services scrambles to open “emergency” temporary facilities at military bases, work camps and convention centers to house up to 15,000 additional children, it’s cutting corners on health and safety standards, which raises new concerns about its ability to protect children, according to congressional sources and legal observers. And even its permanent shelter network includes some facilities whose grants were renewed this year despite a record of complaints about the physical or sexual abuse of children.
“There may be no good choices,” Mark Greenberg, a former head of the Administration for Children and Families (which oversees the unaccompanied-children program) at the HHS, told ProPublica. “Everything has to be weighed against the alternative. And the alternative is the backups at Customs and Border Protection. And recognizing how bad that is, it means that people have to make unpalatable decisions.”
According to internal government statistics and interviews with former officials, legal observers, advocates and congressional staff, those decisions came weeks or months after the first warning signs late last year that the number of unaccompanied minors crossing the southern U.S. border was rapidly increasing, forcing a scramble to set up facilities in a matter of days. No safety standards are in place at the new facilities — unlike controversial “influx” facilities used in the past.
One new site in Midland, Texas, was briefly closed to new arrivals after the state warned that its water wasn’t drinkable. That site and others have been staffed with volunteers who may not have passed background checks and speak no Spanish. One potential site — a NASA research center in Moffett, California — was scuttled after local protesters pointed out it was near a known Superfund site with high levels of toxic chemicals.
While previous influx sites have been criticized by Democrats in Congress and immigration advocates for sometimes falling short of state standards for licensed facilities, HHS has generally agreed to hold operators to those standards, said attorney Leecia Welch of the National Center for Youth Law. But it hasn’t committed to that now. Nor has HHS offered any other standards it plans to hold the facilities to. In a statement provided to ProPublica, Homeland Security Secretary Alejandro Mayorkas said, “We are seeing progress, but it takes time. In the meantime, the CBP workforce has done heroic work under difficult circumstances to protect these children.” HHS did not respond to a request for comment.
It’s “the Wild West,” Welch said, reflecting a view shared by other advocates and congressional staff monitoring the children’s care.
Meanwhile, the federal government has tried to revive its COVID-19-battered network of permanent residential facilities. In January, it quietly renewed three-year grants to several state-licensed providers that previously faced complaints of physical or sexual abuse of children. The facilities have defended their care without denying the allegations.
One grant went to a Texas facility that children were removed from in 2018 amid allegations that staffers were drugging them, and that had previously fired a staff member for placing a child in a chokehold in 2019. Two organizations that have faced repeated allegations of sexual abuse also had their grants renewed: a foster-care provider in New York accused of placing children with abusers, and a shelter in Pennsylvania where children accused the staff of abuse. The New York organization told ProPublica, “The safety of the youth in our care is of the utmost importance to us and has always been,” and it stressed that both staff and potential fosterers go through “extensive background checks.” Neither of the other facilities responded to requests for comment.
By federal law, children are to be held no longer than 72 hours in Border Patrol custody before they are transferred to HHS housing, except in emergency situations. As of March 30, however, over 2,000 children being held at the main Border Patrol facility in Donna had been there for more than 72 hours, according to reporters.
In recent years, Border Patrol facilities for children have lacked toothbrushes or medical supplies, and the fact that Border Patrol agents aren’t trained to deal with children raises risks that a child will become ill or even die in U.S. custody. This has convinced many officials working in the system that deals with unaccompanied migrant children (including some within Customs and Border Protection) that releasing kids into any HHS care is better than leaving them in Border Patrol custody.
HHS normally places children in a network of shelters while their relatives in the U.S. are identified and vetted (a process that, during the pandemic, has typically taken at least a month). When needed, HHS has also opened influx centers that can be set up in weeks and do not require state licensing. Now, with the assistance of the Federal Emergency Management Agency, HHS is opening new “emergency intake sites” in a matter of days, including two in convention centers in Dallas and San Diego.
HHS also relies on a network of state-licensed shelters, which are required to self-report violations found by state regulators to the federal government. A 2020 Government Accountability Office report found that HHS offered unclear instructions on how such violations should be reported. One grantee, which was cited by state auditors 70 times in two years for violations at three facilities, mentioned none of those violations in its reports to HHS.
A review by the Texas Impact Foundation, an advocacy organization, found that shelters in the state were cited for 68 violations involving physical abuse or unnecessary restraint of a child. In two cases, children were placed in chokeholds by staff members attempting to restrain them. (In both cases, the staffers responsible were fired.)
In an incident at a shelter near Houston in 2019, a child reported being held in a chokehold for over two minutes. The facility operator (initially operating under the name Daystar Residential Centers) closed in 2011 after a string of abuse allegations, only to reform under the name Shiloh Treatment Centers a few years later. In 2018, the facility was accused in a legal filing of sedating children with antipsychotic drugs. In response, a federal judge ordered the removal of all children who weren’t considered at risk of harming themselves or others. (The shelter did not respond to a ProPublica request for comment.)
Shiloh was among the 23 facilities awarded new three-year contracts on Jan. 1, receiving two grants totalling $2.6 million. The facility has held only a few children during the pandemic, and Welch said it’s possible that conditions have improved. At her last monitoring visit, she said, she heard none of the horror stories that children had told her in the past. But as the GAO report noted, HHS doesn’t explicitly look at past performance when evaluating grant renewals.
The HHS housing crunch has been badly exacerbated by the coronavirus pandemic. Children’s shelters, like other kinds of congregate housing, are under severe capacity restrictions that reduce available bed space.
The HHS shelter population was growing last fall, even before a federal judge ruled in November that the Trump administration had to take unaccompanied migrant children in, rather than expelling most of them from the U.S. immediately under a March public-health order issued by the Centers for Disease Control and Prevention. From Oct. 31 to Nov. 30, the number of children in HHS custody rose from about 2,000 to about 3,000. In mid-December, with about 3,500 kids in custody, HHS officials said in a briefing that shelters near the U.S.-Mexico border were already at 67% of their capacity limits under COVID-19. But HHS took no action to add capacity until Jan. 15, when it sent a message to other government agencies asking them to scout locations for potential influx sites.
Former DHS officials said that HHS has long resisted taking emergency measures, straining the agency’s relationship with Border Patrol. During a similar crunch in 2019, one former DHS official told ProPublica that HHS “refused to acknowledge the operational challenges” that were leading children to be marooned in Border Patrol custody for days, out of a belief that “immigration was kind of a third rail.”
“It’s no coincidence that in each of the surges since 2014, FEMA — the emergency-management arm of DHS — has had to step in,” another former DHS official said. “When the [HHS] system is overwhelmed by the number of intakes, they don’t have the FEMA-like capacity to think improvisationally, to rush resources, or to modify processes, and they become the bottleneck.”
On March 5, the CDC waived the COVID-19 capacity caps for migrant child shelters so HHS could take more children out of Border Patrol facilities. The Biden administration is now working with states to allow shelters to house more children while complying with state licensing requirements. But shelters are struggling to hire staff, as many qualified professionals still fear working in congregate housing because new coronavirus variants are spreading. HHS recently informed Congress that it has upped its incentive pay to help recruiting, but it’s unclear if that will be enough.
A senior administration official acknowledged in March that the number of beds being made available would at best be a few hundred a week — far too few compared to the number of children arriving.
When the Biden administration announced it was reopening the influx care facility in Carrizo Springs, Texas, in February, immigration advocates and some Democrats condemned it as another way to keep “kids in cages.” Meanwhile, the other influx facility opened by the Trump administration in 2019, at Homestead Air Reserve Base in Miami, was held in reserve. At present, it appears it won’t be reopened; Axios reportedthat Biden himself stepped in to veto the possibility.
But HHS policy requires influx facilities to “comply, to the greatest extent possible, with State child welfare laws and regulations (such as mandatory reporting of abuse), as well as State and local building, fire, health and safety code.” There are no such commitments in place for emergency facilities, according to Welch and congressional staff. It’s still not clear who will operate the facilities after the initial setup is completed, or whether HHS will require them to provide support services to children, such as mental health counseling or legal assistance.
People who work in the system often point out that the ultimate goal is to get children reunited with their U.S.-based relatives as quickly and safely as possible. The lack of support services might matter less if children did not end up staying at the new emergency sites for months, they argue.
“We would always want children in a good, safe, developmentally appropriate setting,” Greenberg told ProPublica. “But the issue is just really different for a child who is going to be somewhere for 30 days” compared to longer-term stays.
Ultimately, how long emergency sites remain open depends on how long children keep coming to the U.S. in numbers beyond what HHS can accommodate. Internal government estimates obtained by The Wall Street Journal predict that as many as 25,000 children could cross into the U.S. in May.