When Births Go Horribly Wrong, Florida Protects Doctors and Forces Families to Pay the Price

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” health care. 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 health care, 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 health care 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.”

“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 health care 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 health care 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.

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 health care 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.

A survey by the Florida Insurance Commission at the time found that more than two-thirds of NICA families polled reported they “were treated without care or kindness.”

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.

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.

NICA deducted $332.92 for three months of FedEx charges, whittling her final paycheck down to $717.08.