COCOA, Florida — It is homework time at Ashley Grant’s house on a tidy, tree-lined street here. Grant places six crayons on a countertop. Her daughter, Brooklyn, still wearing her red school polo, sits in her wheelchair. She looks directly at a video camera and smiles.

“Four plus one is five,” says Kyle Stromquist, Grant’s boyfriend. “What about four plus two? How many is that?”

Brooklyn stares with purpose at a computer tablet displaying words and images and letters. As her hazel eyes gaze at the screen, the device gives voice to her answers.

Six, says the tinny, computer-generated voice.

“Bam!” Stromquist shouts. “Good!”

Brooklyn straightens in her chair and beams.

Brooklyn’s determination to learn is no surprise to the teachers who have observed her grit and resolve. They have come to embrace what her mom fought long to prove: that inside that broken body is a nimble mind.

“She’s smart,” Karen Rush, Brooklyn’s former special education teacher, said during videotaped testimony. “Never lets anything stop her.”

Not her disability. Not the expectations of strangers. And not the lawyers for a state-created program who fought for two years to persuade a judge that Brooklyn’s mind was as damaged as her body.

What Brooklyn’s mother sought was the chance to file a malpractice lawsuit against the medical providers who she believes made serious errors during Brooklyn’s birth. Such suits are severely curtailed in Florida under the 1988 law that created the Birth-Related Neurological Injury Compensation Association, or NICA.

NICA uses money from assessments paid by doctors and hospitals to offer parents like Grant an upfront payment and the promise of “medically necessary” care for the rest of a child’s life.

Grant believed her daughter had not suffered the severe cognitive disabilities necessary to qualify for the program.

To get her day in court, Grant would have to prove her daughter’s intelligence.

The legal battle over whether NICA could shield Brooklyn’s doctor and hospital from all liability would last 836 days.

There is a perverse irony at the root of NICA. Hundreds of parents facing financial ruin desperately want to get into the program but can’t because the circumstances of their child’s birth don’t fit the precise parameters. Maybe their son or daughter weighed 5 pounds, 4 ounces, instead of the minimum 5 pounds, 5 ounces. Others, mostly those whose children have the most severe disabilities, want out so they can try to impose a measure of accountability on their doctor by pursuing a lawsuit.

Those who want out of NICA sometimes meet M. Mark Bajalia, a lawyer for NICA and part of the legal and emotional gantlet they must successfully navigate. He has represented NICA in administrative court dozens of times, making him one of the program’s most prolific attorneys.

On Dec. 3, 2018, Bajalia came to Cambridge Elementary School — then Brooklyn’s school — to depose her teachers and therapists, who had reported that she was, as Rush said, “smart.” Under the law, Brooklyn’s neurological injuries at birth had to “substantially” harm both body and mind in order for her to be accepted by NICA.

Bajalia had never laid eyes on Brooklyn. And yet to the staff and teachers he interviewed, it seemed he was suggesting that they were embroidering her mental abilities.

“It’s your testimony as you sit here today that [Brooklyn] does not have any cognitive or intellectual impairment?” the lawyer asked Rush.

He was seeking to judge Brooklyn by standardized test scores, not by what her family and teachers knew by being with Brooklyn and watching her develop alongside her peers.

As Bajalia fired off pointed questions, the teacher had an epiphany: While Rush and the other educators, therapists and aides marveled at Brooklyn’s resilience, Bajalia seemed to her to see only the child’s flaws.

“You just want me to say what you want me to say,” she snapped.

Bajalia did not respond to phone calls and an email from the Miami Herald. Reporters also asked a NICA administrator to pass along a request for comment.

NICA was Florida’s answer to obstetricians’ complaints about the cost of malpractice insurance. Only one other state, Virginia, has a similar program.

Since NICA’s inception, families received a one-time $100,000 payment and a promise of lifelong care that was “medically necessary” and “reasonable,” as determined by the program.

In exchange, families could not sue the doctor or hospital. Aside from annual premiums — obstetricians paid $5,000 and hospitals contributed $50 per live birth — the medical providers paid nothing; the costs were borne by the fund.

NICA accumulated nearly $1.5 billion in assets.

Gov. Ron DeSantis signed a bill into law this week to increase the one-time payment to $250,000 after a series of reports by the Miami Herald and ProPublica documented how some parents felt NICA was hoarding money while depriving them and their children of services and support — from wheelchairs to modified vans to therapies that could improve their children’s lives. The law, designed to reform the program, significantly improves benefits for families.

Ashley Grant could escape NICA and sue the doctor, potentially for much more than what NICA would pay, but only if she could prove that Brooklyn was cognitively whole. When cases involving major birth injuries go to court, they can and often do generate millions.

“Brooklyn on paper is not who she is. She is very intelligent,” Grant said of her daughter, who turned 8 in April. “She shows you who she is by getting to know her. And you’re never going to see that on paper.”

Grant said it hurt to see the grilling over her daughter’s disabilities by a man who appeared to know little of Brooklyn’s struggles and triumphs.

“Obviously, it is devastating,” she said. “It didn’t matter to NICA. ... They don’t know who your child is. You can argue until you’re blue in the face. But they want to hear what they want to hear, and that’s it. They didn’t hear us telling them how intelligent she is.”

So, she had to prove it.

 

The quiet is pierced by giggles and a high-pitched primal scream. Brooklyn doesn’t like physical therapy.

She is wearing high-top sneakers in her trademark hot pink. Stromquist, Grant’s boyfriend, fastens orthotic braces on top with velcro. The braces — pink, of course — have been customized, decorated with ice cream cones, donuts, stars and unicorns.

Precious as they may be, the braces leave marks on her legs, especially after therapy.

Brooklyn wobbles on rubbery knees, gamely trying to stand upright, even for 10 seconds.

Stromquist, a Cape Canaveral firefighter and a father figure for Brooklyn, grips her tiny hands in his to steady her and speaks tenderly as he puts her through the grueling routine:

“Look at me. Look at me. Look at me. Look at me.”

“Lean forward like you’re giving Daddy a hug. ... If you want to walk one day, this is how you’re going to have to do it.”

Brooklyn betrays no bitterness that her vibrant mind is trapped inside an uncooperative body. As digitized voice technology advances, perhaps she will someday be able to discuss “hypoxic-ischemic encephalopathy” — one of her diagnoses — even if she cannot physically overcome it.

The sight of her in her wheelchair is jarring: That little body in a big person’s machine.

Brooklyn recently arrived home from school, her bright hair pulled back in a ponytail. Her hazel eyes danced over the computer screen. Juice, said the artificial voice. Brooklyn was thirsty.

She asked to sit on her mom’s lap.

It shouldn’t have been this way, her mother said. It didn’t have to be.

Grant was 23 and healthy, working full time as a sales associate for Bath and Body Works. Her pregnancy had been uneventful.

She expected to deliver at Wuesthoff Medical, now called Rockledge Regional Medical Center, a 298-bed hospital just southwest of the Kennedy Space Center. Dr. Hae Soo Lim — a 1993 graduate of the University of Florida’s medical school, whose obstetrics residency was at the University of Miami — handled the delivery when Grant’s water broke about 4 a.m. on April 1, 2013.

Doctors estimated Grant had been pregnant for about 39 weeks, making it a full-term delivery. She was given a drug commonly used to speed up contractions and hooked up to a fetal heart monitor to measure and record her baby’s vital signs, Grant alleged in court papers.

At about 8:35 that night, the monitor showed signs that Brooklyn was in trouble, the family alleged in court filings. By 9:57, the family said, the monitor had recorded three decelerations of Brooklyn’s heart rate — indicating the baby was in distress. The nurses overseeing Grant’s delivery failed to appreciate and act on the warnings, Grant’s court papers said.

Grant remembers a hospital staff surrounded and badly distracted by a major, messy renovation. “The hospital was under complete construction,” she said. “It was chaos. And I feel like they shouldn’t be able to have such chaos going on in a hospital when people’s lives are at stake.”

Eighteen hours in, Grant was told she was no longer dilating, her daughter was “sunny side up” — head down, facing inward — and unable to transition through the birth canal, she said. Brooklyn was delivered via an emergency C-section. But by then, Grant said, Brooklyn had sustained catastrophic neurological damage. Brooklyn had to be revived. She began to have seizures almost immediately.

At some point during labor, Grant said, the hospital and the doctor had thrust a stack of papers in front of her to sign. Buried among them was an acknowledgement of NICA. Grant said she signed it without understanding what it meant.

Grant did not see her daughter for three hours, she said. She could not hold her for seven days. While Grant recovered at Wuesthoff, her daughter was driven in a mobile intensive care unit to Florida Hospital, then to Winnie Palmer Hospital for Women & Babies in Orlando, the latter better equipped to handle a newborn with extensive neurological damage.

Within an hour or two, Grant said her obstetrician came into her recovery room and apologized. “She did say, ‘I’m sorry, I’m sorry.’ But that was it.”

Attorneys for the hospital declined to comment, adding that, “We can say that the health and well-being of our patients is our top priority.”

In court pleadings, Wuesthoff’s lawyers said the hospital bore no responsibility for any injuries Brooklyn sustained. “The injuries and damages alleged to be suffered by [Brooklyn] were caused by persons and/or entities over whom [the hospital] had no control or duty to control,” lawyers wrote, specifically mentioning Lim and a nurse, who did not work for the facility.

An attorney representing Lim, who works for the Florida Department of Health, said in an email that his client will not comment “on pending legal matters or individual patient cases.”

In court records, the Health Department, speaking for Lim, wrote that “it is not guilty of any negligence which was the legal cause of [Brooklyn’s] injuries.” DOH blamed Brooklyn’s brain damage on “acts or omissions by other persons, independent contractors, corporations, or professional associations or entities other than” the department.

To this day, no one from the hospital has expressed regret, Grant said. As for the doctor’s apology: “It’s not going to give my daughter the life that she deserved.”

Anyway, Grant said, she wants answers, not remorse.

Despite the restrictions placed by the NICA law, Grant began her quest to hold the hospital responsible. She sued the hospital and Lim in 2015. As happens in the NICA process, the judge suspended the lawsuit and required Grant to start all over, this time in front of an administrative judge, the kind that adjudicates NICA cases.

After 10 months, NICA made its standard offer: Drop the litigation. Collect $100,000 now and get Brooklyn lifelong medical care, provided it is “medically necessary.” The care would mainly come through Medicaid — Florida’s safety-net insurer for indigent and disabled people, which has frequently been accused of relegating patients to an inferior health care system.

NICA says it is responsible for anything Medicaid declines to cover.

But Brooklyn was already in Medicaid, and Grant had no desire to stay there. She already had grown weary of Medicaid’s denials of care and equipment — and she wanted her daughter to be treated by “the best” doctors, not just the ones willing to accept Medicaid’s low reimbursement rates.

Grant indicated she would reject the offer. Two months later, Bajalia was brought in to represent NICA’s interests. That largely involved trying to prove that Brooklyn was intellectually impaired, a finding that would force the family to accept NICA compensation.

Bajalia went to Cambridge to depose four of Brooklyn’s teachers, therapists and aides. They all marveled at Brooklyn’s mental abilities. Bajalia was not having it. He seemed to dismiss their testimony, Grant said, as the magical thinking of supporters who were personally and heavily invested in Brooklyn’s success.

The friction between Bajalia and Brooklyn’s teachers showed in the language they chose, including Bajalia’s use of the word exceptionality, as in “exceptional education.” “Exceptionality,” Bajalia said, is “just a politically correct way of saying because of her physically handicapped limitations.”

He asked Sheila Burkhardt, Brooklyn’s former speech pathologist: “Now, [Brooklyn] is in a normal classroom, correct?”

“A general education classroom, yes,” Burkhardt answered, emphasizing the words.

“I mean no disrespect,” Bajalia continued, “just because she’s in a normal classroom doesn’t mean that [Brooklyn] is normal, correct?” Normal is another term that parents of children with disabilities and their advocates find objectionable.

He asked about testing. Brooklyn had been tested well over two years before — when she was 35 months old — and that testing showed her significantly behind her peers. Why not judge Brooklyn based upon the tests? he asked.

“It’s considered old data,” Burkhardt said.

“It’s your testimony, as you sit here today, that [Brooklyn] does not have any cognitive or intellectual impairment?” Bajalia demanded of Rush, Brooklyn’s former teacher.

“I do not see her having any cognitive or intellectual impairment.”

Bajalia then asked Rush about Brooklyn’s physical disabilities: “You didn’t feel the need to test her motor abilities?”

“Obvious,” Rush interrupted. “She’s not going to stand on one foot. I’m not going to ask her to stand on one foot.”

“Come on up Brooklyn.”

An aide pushes Brooklyn’s wheelchair to the front of an auditorium on awards day. The other children fidget in their seats and whisper. One little boy raises his hand.

“Perseverance is the ability and self-control that forces you to work through challenges,” the speaker says. “Having perseverance means that, when you are facing a challenge, you use your mind and your body to overcome it. Perseverance means you are able to wait and to work through difficulties.”

“Brooklyn shows perseverance every day. She overcomes obstacles with grace and never gives up. She has taught the class what perseverance looks like. I am blessed to be her teacher, and her classmates have learned incredible things from her. She is an amazing little girl and I am so proud of her.”

The classroom erupts into applause.

 

The sparring with Bajalia, unpleasant as it was for Brooklyn’s teachers, helped determine the outcome. NICA had hired a neurologist, Laufey Sigurdardottir, to review the case, which eventually included the teachers’ observations. Her final report, dated Dec. 29, 2018, concluded that Brooklyn was not substantially mentally impaired.

She was, therefore, ineligible for NICA. An administrative law judge issued a final order dismissing the administrative law case in February 2019.

In an email, NICA administrators said the legal process in Brooklyn’s case worked exactly as intended: Two medical experts reported that Brooklyn met criteria for NICA participation. When Brooklyn’s mother disagreed, Bajalia elicited testimony “for fact-finding purposes, asking questions of each witness to better understand the circumstances of the case.”

“The initial medical review produced a determination that the child met NICA qualifications, information during deposition to explore that determination indicated otherwise, and, as a result, the medical experts changed their determination.”

Although it did not comment specifically on Bajalia, NICA said that the program’s lawyers question family members and other witnesses to gain information only, and that “sometimes those questions challenge the witnesses’ positions in order to draw out a full picture of the case.”

The statement added: “NICA expects all of its attorneys to act in a professional and respectful manner while representing NICA. NICA does not instruct its attorneys to portray children in any specific manner during these depositions, although we certainly hope and expect that children and their families will be treated with courtesy and respect.”

Michelle DeLong, one of Brooklyn’s lawyers, said Bajalia kept insisting that Brooklyn be evaluated by standardized intelligence tests, though Brooklyn was simply not capable of wielding a pencil — let alone filling in little bubbles for answers. “He got caught up in standardized testing to prove she was cognitively impaired.”

As to Bajalia’s language, “tone deaf is the right word,” DeLong added. “I think he really believed he was doing a good thing by offering these NICA benefits to Brooklyn, and he just couldn’t understand why the family wouldn’t take them,” she said, adding that the $100,000 NICA proffered fell far short of Brooklyn’s needs.

“It was a battle, because he could not put himself in the shoes of the family and understand their perspective,” DeLong said.

After more than two years, Ashley Grant had won the right to pursue her lawsuit, to try to hold to account the medical providers whose negligence she believes harmed her daughter. And though Grant’s exit from NICA was a victory for the 31-year-old, her quest is far from over. Her medical malpractice claim in Brevard County Circuit Court has been set for trial in June 2022.

She’s deeply in debt with Brooklyn’s medical bills, some already in the hands of collectors.

At least, she said, they have a chance. If she had stayed with NICA, “there’d be no justice for Brooklyn.”

Florida Gov. Ron DeSantis has signed legislation overhauling a controversial state program that provides lifelong care for children born with catastrophic brain damage, approving the most far-reaching reform in the program’s 33-year history.

With DeSantis’ signature Monday night, parents who participate in the Birth-Related Neurological Injury Compensation Association, or NICA, will get an immediate $150,000 cash benefit and the pledge of Florida lawmakers that they will no longer have to fight with administrators for wheelchairs, medication, therapy and other services for their severely disabled children.

That’s on top of the $100,000 the law previously provided, which had not been increased since the program’s inception. Families said that original amount fell far short of providing for a severely disabled child.

The law, which takes effect immediately, follows an investigation by the Miami Herald, in conjunction with the investigative newsroom ProPublica, that found NICA had generated nearly $1.5 billion in assets — largely through the investment of assessments paid by doctors and hospitals. At the same time, families complained, administrators frequently delayed or denied claims for medication, therapy, equipment and nursing services to parents struggling to pay their bills.

The legislation is, in many ways, a rebuke of NICA’s leadership, which had for decades run the program with little transparency. Parents said the program denied claims and made it difficult for them to access care for their children with severe and permanent brain damage. In one 2013 email obtained by the Herald, NICA’s director wrote that the program was “not here or funded to ‘promote the best interest’ of the children.”

The new law, passed unanimously by both chambers of the Legislature, says otherwise: One provision requires that “the association shall administer the plan in a manner that promotes and protects the health and best interests of children with birth-related neurological injuries.”

Parents and guardians of children in NICA said they were glad to see the governor approve the changes, but some also wondered why it took years for the state to address the program’s inadequacies.

“It feels good to be acknowledged, not just acknowledged but that they’re trying to make things right,” said Jennifer Pham, whose younger brother, Justin Nguyen, was accepted into NICA in 1998.

Pham, whose family’s story was reported by the Herald, said her family had reached the point of desperation after years of fighting with program administrators to get what Justin had been promised.

“Why do families have to go through so much to get change?” said Pham, 31, whose family lives in Jacksonville. “I feel like anytime anything good happened with NICA was because my family was at the edge. We were at rock bottom, and then they wanted to help out.”

NICA administrators said in a prepared statement that the organization “wholeheartedly supports and appreciates” the legislative reforms.

“We are eager to provide these new benefits and have already begun implementing the new language and protocols envisioned in the legislation,” administrators said, noting that the program recently launched a revamped website and updated the benefits handbook. “Our 17-person team is committed to meeting all statutory deadlines and will do everything we can to give NICA families the support they need in navigating the claims process.”

For most of its history, NICA operated in obscurity. Lawmakers created the program to manage the care of children born with severe physical and cognitive disabilities as the result of oxygen deprivation or spinal cord injury at birth.

Families were steered into the program by a 1988 law — one of only two in the nation — that severely restricts the parents of certain brain-damaged children from suing their obstetrician or the hospital where their child was born. NICA was created to protect obstetricians from ruinous legal judgments for some of the most expensive medical mistakes, thereby lowering malpractice liability insurance premiums.

Parents said they were often treated with indifference and contempt by administrators who, they believe, cared more about their investment portfolios than the lives of frail and disabled children. Administrators hired a private investigator to tail one boy’s parents after they appealed NICA’s refusal to pay for therapy.

Yamile “Jamie” Acebo of Pembroke Pines — whose hardship was detailed in a Herald story — said the help her daughter, Jasmine, received from NICA often was delivered grudgingly, and late, if at all.

“They were just trying to nickel-and-dime me,” Acebo said of her experience with NICA. “It’s like it was their savings account — like it was theirs and they were not really doing anything to help people.”

But Acebo said she’s happy that future NICA families will get more freely what she had to fight for. “Finally something is going to get done,” said Acebo. “They are finally going to do the right thing. A lot of these families are struggling and should not have to struggle.”

Among other provisions, the new law will give families the means to fully cover funeral and burial expenses if a child in NICA dies. Acebo said she couldn’t afford both a coffin and funeral when 27-year-old Jasmine died in 2017. She said she had had to cremate her daughter, though her faith frowns upon the practice. “Let me tell you,” she said, “I had to scrape and scrounge, and people had to give me money for my daughter’s funeral.”

With DeSantis’ signature, “on top of grieving a child, they won’t have to worry, ‘Where am I going to get money to bury my child?’” Acebo said of parents still in the program. Because her involvement in NICA ended with the death of her daughter, Acebo will not receive the added $150,000. But she will receive an enhanced death benefit, $50,000 for death expenses, not the $10,000 the law previously allowed.

Florida Chief Financial Officer Jimmy Patronis, whose agency oversees NICA, said in a prepared statement Monday night that the legislation “fundamentally reforms” the program.

“This law represents a major paradigm shift,” Patronis said. “As of now, NICA must be fully engaged in the overall well-being of these families and children. Overall, these families are going to get more relief, and it is our job to ensure the board is holding NICA accountable and seeing these reforms are implemented.”

In addition to the increase in the one-time payment and the extra allotment for parents of deceased children, the law provides:

• A $10,000 annual mental health benefit for families.
• Representation on the board of directors by a NICA parent and an advocate for disabled children, and a six-year term limit for all board members.
• An increase in the lifetime housing assistance and home modification benefit from $30,000 to $100,000.
• Money for wheelchair-accessible vans and a “reliable method of transportation” for the life of children in care.
• A code of ethics for administrators and board members.
• An appeal process at the Division of Administrative Hearings, where NICA petitions are filed, for families to dispute NICA denials.

In a prepared statement, one of its legislative sponsors said the law “will help ensure so many struggling families get the help and care they deserve.”

“As a mother of two, I know there is nothing more important than ensuring your child has the proper care they need to live a long healthy life,” said state Rep. Traci Koster, a Safety Harbor Republican and the law’s House sponsor. “This legislation brings needed changes to the NICA program and improves services that they provide.”

Sen. Lauren Book, a Plantation Democrat who co-sponsored the legislation in the upper chamber, said, “No family should have to beg for the treatment and supplies their children need while a quasi-governmental agency puts up roadblock after roadblock.”

Sen. Danny Burgess, a Zephyrhills Republican who also co-sponsored the legislation, said: “On behalf of all of the NICA families who have struggled, this is a light at the end of a very dark tunnel.”

Every other month, Jay Alexander Benitez would be hospitalized with pneumonia or other respiratory infections that stemmed from the profound brain damage he suffered at birth. “It was heartache,” the boy’s mother, Alexandra Benitez, said. “Being in the hospital scared him.”

Jay’s pulmonologist said that regular therapy with a nebulizer — a machine that delivers vaporized medication to the lungs to improve breathing — might prevent some of those illnesses. But Benitez said she was forced to wait months before the treatments could begin.

A Florida law passed in 1988 had prevented the Benitezes from filing a malpractice suit to recoup the costs of their son’s care but promised that a no-fault fund would pick up the tab.

Alexandra Benitez soon learned that the no-fault fund, the Birth-Related Neurological Injury Compensation Association, or NICA, would pay for nothing — not until she had first gone to Medicaid, an insurance program loathed by many of Florida’s poorest residents for its cut-rate reimbursements and propensity to fight claims large and small.

When Jay’s pulmonologist recommended the nebulizer machine to loosen mucus in his lungs, Medicaid said no. The family needed extra feeding tubes for Jay’s gastrostomy, a procedure in which a port is inserted directly into the stomach to provide nutrition. Medicaid said no. Jay’s doctor prescribed a “stander,” an adjustable frame that could be used to develop muscle strength in the boy’s legs. Medicaid said no.

NICA would not cover any medical care for her son until she could prove that Medicaid had already denied the claim and show a signed doctor’s letter verifying that the child really needed whatever she was requesting — not just breathing treatments, but also diapers, syringes, anything.

“They make the family jump through all these hoops. Just to get what children are entitled to,” said Benitez, who lives in Lakeland, just east of Tampa Bay. “Hardship, that’s what it is.”

This is the story of how Florida lawmakers stripped parents of the right to sue over births gone catastrophically wrong, created a no-fault program funded by fees paid by doctors and hospitals to cover those claims, made hundreds of millions investing those funds in the stock market, accumulated $1.5 billion in assets and then offloaded much of the costs of care onto taxpayers.

That left parents like the Benitezes to grapple with Medicaid’s arcane rules, a shortage of doctors willing to accept Medicaid patients and frequent denials of claims.

About 125 of the 215 brain-damaged clients, some of them now adults, currently in Florida’s NICA program qualify for Medicaid, and they are required to seek help first from the taxpayer-funded safety-net plan. Those with private health insurance coverage also must ask their insurer to pay for care.

After decades of enforcing this last-to-pay policy, NICA faces an existential reckoning.

Florida legislators approved a bill of sweeping reforms for the program after the Miami Herald and the nonprofit newsroom ProPublica began publishing an investigative series in April documenting parents’ frustrations with NICA. Gov. Ron DeSantis has yet to sign the bill.

And a federal lawsuit alleges that by telling parents to go to Medicaid first, NICA is causing them to commit fraud by filing a false claim with Medicaid when NICA was supposed to pay instead.

Both Medicaid and NICA consider themselves a “payer of last resort,” meaning they pick up only what insurance and other “third parties” do not. But in reality only one program can be last in line to pay, and that — as explicitly stated in federal law — is Medicaid, the whistleblower lawsuit says.

A federal district judge in Fort Lauderdale rejected an effort by NICA to throw out the suit, a decision the program is appealing.

When asked in a Sept. 25, 2008, deposition what would happen if Medicaid were to stop covering care for people in the program, NICA Executive Director Kenney Shipley replied: “It would make NICA insolvent.”

Neither NICA nor the Agency for Health Care Administration, which administers Medicaid in Florida, would provide figures for how much Medicaid has spent over the years on children enrolled in NICA. But an analysis AHCA performed for NICA in 2020 casts doubt on Shipley’s dire prediction.

Agency records for the period from January 2009 through Sept. 20, 2017, show AHCA paid at least $35.8 million to provide care through Medicaid for 122 people with NICA coverage. That equates to less than $5 million per year.

Still, federal law is clear that without a specific exemption, which NICA does not have, Medicaid must pay last, said Sara Rosenbaum, a health law professor at George Washington University and adviser to Congress on federal Medicaid payment and access policy.

“I’m not understanding why [Medicaid] has not come down on them like a load of bricks,” Rosenbaum said. “There’s something upside down about this whole arrangement.”

Helping Doctors, Billing Taxpayers

Florida lawmakers created NICA to reduce malpractice insurance premiums for doctors by shielding them from lawsuits for birth injuries that result in profound physical and cognitive disabilities, usually due to oxygen deprivation.

Obstetricians pay $5,000 a year for coverage under the program, an amount that hasn’t been raised in 33 years and would be nearly $12,000 in today’s dollars. All other licensed Florida doctors pay $250 a year. Hospitals chip in $50 per live birth.

In return for barring parents from suing, NICA compensates them with a one-time payment and a commitment to cover a lifetime of “medically necessary” care for the injured child.

But parents whose injured children are enrolled in NICA and qualify for Medicaid based on their income say Florida stripped them of the right to sue and replaced it with essentially the same medical treatment that every other poor and disabled child is entitled to in the state. In Florida, Medicaid rates below the median for quality of care when compared with other states.

“They said our son was going to be taken care of. All his medical care would be taken care of,” Benitez said of NICA. “Then, every little thing my son needed, we had to fight for it.”

The bill adopted by Florida legislators in April attempts to make life easier for families like the Benitezes. The legislation raises the one-time benefit to families from $100,000 to $250,000, boosts the payment when a child dies from $10,000 to $50,000 and requires for the first time that at least one member of the NICA board of directors be the parent of a child in the program.

A proposal to raise the $5,000 OB-GYN dues and the $250 annual fee for all others doctors by up to 3% a year, starting in 2022, was shelved.

Lawmakers left for a later date the issue of whether NICA can keep sending families to Medicaid first for their care.

During hearings, Florida lawmakers proposed adding a statutory requirement that NICA repay Medicaid for the care it has provided to children since the program began and going forward. NICA’s administrators beseeched them not to do it.

“I would just plead with you not to take action that could potentially cost hundreds of millions of dollars to the NICA program, potentially put it in financial jeopardy, and really derail where we’re trying to go with all of these positive benefits,” said Steve Ecenia, general counsel for NICA.

“This amendment causes us great concern and we would ask you not to adopt it,” said Ecenia, who is also a lobbyist for one of Florida’s largest for-profit hospital chains, HCA Healthcare.

The proposal was dropped.

NICA did not respond to a question about Ecenia’s characterization given that Florida data shows Medicaid has spent less than $5 million a year on these children over a recent nine-year stretch.

In the final bill, lawmakers directed Florida’s Medicaid agency to tally the “extent and value” of NICA’s potential liability for Medicaid spending and make recommendations about whether the state should recover those funds.

Whatever the Legislature does, NICA’s reliance on Medicaid may be doomed because of the lawsuit filed in Fort Lauderdale federal court.

NICA asked that the case be dismissed, raising a defense in court filings that the program is a state agency that cannot be sued.

In a 14-page order issued Sept. 18, U.S. District Judge William P. Dimitrouleas rejected the argument, finding that NICA is not a state agency and that federal and state laws make NICA legally responsible for paying health care claims before those costs can be passed on to taxpayers. NICA has asked the 11th U.S. Circuit Court of Appeals in Atlanta to reverse Dimitrouleas’ ruling.

In a 2019 email, Shipley, NICA’s executive director, acknowledged the risk that a judge might rule the program must pay first, with Medicaid serving only as a backup. She called this the “Sword of Damocles,” referring to the myth of the king who had to sit beneath a sword hanging by a thread.

The only other program like NICA, in Virginia, was forced to stop sending children to Medicaid for their care in 2018 and paid millions of dollars back to the federal government after being sued by the same whistleblower who filed suit in Florida.

"Always Denying Me"

As Alexandra Benitez drifted in and out of consciousness during her son’s chaotic delivery, she tried first to console her husband. Everything will be OK, she said, “because we are in the hospital after all.” Bleeding heavily from what she later learned was a tear between her uterus and her baby’s placenta, Benitez later bargained with her doctors.

“I told them to forget about me,” Benitez said. “Just take my son, and save him.”

Born with a severe brain injury, Jay Alexander Benitez was approved for NICA coverage in December 2001.

Alexandra Benitez, now 48, said she was told that NICA would cover a lifetime of care for Jay but not that she would have to get denials from Medicaid first.

“This was a constant thing, because my son always needed something,” Benitez said.

Medicaid, like NICA, did cover nursing care. Initially it agreed to pay for eight hours daily, allowing Benitez time to sleep, cook or clean the house. To remain eligible, Benitez had to reapply every six months and meet the low-income requirements.

If a family’s bank account crept over $2,000, Medicaid would terminate the nursing care for exceeding the program’s low-income requirements. Currently, a Florida household of three cannot earn more than $29,207 a year to qualify for Medicaid. Denials, delays, reductions in care and terminations can be appealed.

For years, the Benitez family lived on a razor’s edge of poverty, one roof leak or car repair away from ruin.

“They were always denying me,” Benitez said.

Benitez said she wishes NICA knew how Jay’s profound disabilities affected the entire family and how dedicated she and her husband were to his well-being.

“He was a happy soul,” Benitez said. “Even though his body was in constant pain he would fight through it.”

Jay died at home on Jan. 29, 2015, after suffering a massive seizure. He was 15. Benitez said she did whatever she could to make Jay’s life better. Having to slog through repeated requests, denials and appeals with Medicaid before NICA would pay depleted her.

“When you have a child you have hopes and dreams. You see them in the future. You don’t look forward to burying your own child,” she said. “It’s a hard, long road. A long fight. ... My son’s life, my family’s life, was not easy at all.”

Perpetuating Poverty

Although NICA and Medicaid cover a limited amount of in-home nursing care — and NICA even pays parents to watch their own children — some families are forced to patch together caregiving plans with nurses who don’t show up for work, sleep on the job, relocate unexpectedly or simply leave midshift, records show.

Pat Wear, who helped oversee a disability advocacy group in Florida before becoming commissioner for mental health and developmental disabilities in Kentucky, said low reimbursement rates are “at the heart of” Medicaid’s — and therefore NICA’s — inability to provide reliable, let alone high-quality, in-home nursing care.

“There’s a direct correlation between the reimbursement rates and quality of care,” said Wear, who is now retired. “Generally speaking, you get what you pay for.”

Even when NICA covers expenses that Medicaid won’t, it is NICA policy that the program will pay at the same reimbursement rate as Medicaid — which critics say ensures that the quality of care seldom exceeds what Medicaid can provide.

Florida’s Medicaid program spent less per enrollee to provide care for people with disabilities than almost any other state, ranking 44th out of 50 states in 2018, the most recent year reported in federal data.

In 2014, a Florida federal judge found that Medicaid’s low reimbursement rates relegated impoverished children to an inferior health care system.

Dr. Rex Northup, a retired critical care specialist who headed the Florida Panhandle region of another taxpayer-funded program, Children’s Medical Services, testified before the judge at the time. He described how some Pensacola families on Medicaid had to travel almost 350 miles to the University of Florida’s Shands Hospital in Gainesville to find a specialist willing to treat a medically complex child — not because the specialty was that rare, but because many doctors simply weren’t willing to accept Medicaid reimbursement rates.

Medicaid was “supposed to provide care equal to other insurance,” Northup said. Except in extremely rare cases, it didn’t, he added.

Then-U.S. Circuit Judge Adalberto Jordan found that Florida’s Medicaid reimbursement rates were so low that children in the state’s program did not have adequate or reasonable access to medical and dental care as required by federal law. The case settled, with health regulators vowing to improve reimbursement rates and access to care. (Jordan was elevated to the 11th U.S. Circuit Court of Appeals while the lawsuit was still pending.)

As part of the settlement, Florida’s Medicaid agency instituted an incentive plan that raised reimbursement rates for pediatricians who met certain requirements. Some are now paid the Medicare rate for elders, which is higher.

NICA administrators reject the claim that any children in the program who are insured by Medicaid are given inferior health care.

“NICA families receive care from some of the best, most specialized doctors in the United States — and no doctor has refused to care for a NICA patient, in Florida or elsewhere, due to reimbursement rates,” the program said in answer to a series of emailed questions from the Herald. “Not one.”

“If they, for some reason, do not accept a specific reimbursement rate for medically necessary and reasonable treatment, then NICA will pay whatever is necessary to make sure its families do not incur out-of-pocket expenses.”

NICA case management logs, obtained by the Herald under Florida’s public records law, are filled with references to parents calling the program, sometimes in tears over losing their jobs, and falling deeper into poverty, because of nursing-care issues:

• Mother “states that there is no way she can work because nursing care is not dependable and many times she has to go to work and then come home to care for [her child] as well or can’t go to work at all because nurses don’t show up.”
• “Nurses are calling off frequently and mother is having a hard time performing her job from home.”
• “Mother called, lots of problems with keeping a nurse, one left for a different job, one sleeps on duty and parent did not want her back.”
   

That mother called NICA to complain that her “husband had to come home from work to take care of [their] child. Work told him he was missing too much time re sick child, if he left don’t come back.”

Later — the exact dates are redacted — the log noted the father’s employer followed through with the threat. “Last week, father was let go because he had to go home to care for child.”

The log noted the father could be paid $15 an hour to give care to his disabled child when he’s forced to leave work. But if the father quit his job for good or was fired, his caregiving pay from NICA would drop to $10 an hour.

Showdown in Federal Court

NICA’s current legal reckoning is being driven by the parents of a severely disabled boy named Cody Arven. In July 2015, they challenged the policies of the Virginia Birth-Related Neurological Injury Compensation Program. It was the model for NICA.

There are some differences between the two programs. Florida’s soon-to-be-expanded board of directors consists of doctors, hospital representatives and insurers. Virginia’s board already includes two members who represent people with “special needs,” as well as a plaintiffs’ attorney. In Virginia, parents have up to 10 years after a baby’s birth to file a claim, compared with five years in Florida. And while Virginia does not offer a one-time $100,000 award, it pays lost wages annually to the injured child once he or she turns 18. The pay is equal to 50% of the average private, non-agricultural wage. The benefit amounted to about $29,000 in 2020.

In their federal lawsuit, Veronica and Theodore Arven, the latter now deceased, accused Virginia’s birth injury fund of illegally dumping its costs on taxpayers through Medicaid. Cody Arven was accepted into the Virginia fund after his 2003 birth left him severely disabled.

In 2018, the Virginia program settled by paying $20.7 million to the U.S. government and agreeing to stop shifting costs to Medicaid in the future. For filing the whistleblower lawsuit, the Arvens received $4.1 million of that.

That same month, Virginia’s program started buying private health insurance for all of its covered children who had relied primarily on Medicaid, said George Deebo, the director. Deebo said the change caused about a 20% increase in spending for the program.

“It changed the order of how we pay for services,” he said of the settlement. “Essentially, we reversed position with Medicaid.”

Florida NICA took notice.

“This is a terrible outcome,” one of the Florida program’s lawyers, Paul R. Monsees, wrote in a January 2019 email to Shipley and NICA’s general counsel. “What is to stop” a family from filing such a whistleblower suit in Florida? Monsees asked.

Three months later, on April 25, 2019, the Arvens did exactly that. Under a federal law, any person can bring a civil lawsuit against companies or people who allegedly defraud the U.S. government.

Whistleblower lawsuits are initially sealed so potential wrongdoers aren’t tipped off and complaints can be investigated. The Arven lawsuit was unsealed in September 2020 when Dimitrouleas rejected NICA’s attempts to dismiss it.

Although the issues are similar to Virginia, the stakes are higher. Florida’s NICA program has accepted more claims — 433 compared with about 255 for Virginia.

Virginia’s fund holds $500 million, about one-third of NICA’s assets.

"Stealing From Medicaid"

Florida and federal law require AHCA to claw back payment whenever Medicaid covers medical services that could have been paid for by a so-called third party, such as a health insurance plan or NICA.

The few exceptions to this rule are named in state and federal guidance and include state health agencies and federally designated benefits, such as the Indian Health Service, the Ryan White HIV/AIDS Program and the Women, Infants and Children program.

NICA is not on the list of exceptions — despite requests to state lawmakers and state and federal health regulators from NICA’s attorneys to be included.

When the Herald asked AHCA for records showing whether the agency has made any attempts to recover any money from NICA, the agency refused to answer, citing the pending federal lawsuit.

But while NICA’s attorneys failed to persuade AHCA to alter its policy on Medicaid liability, they have argued successfully thus far in state courts that NICA has no obligation to repay Medicaid.

Administrative law judges who preside over NICA petitions and claims at the Florida Division of Administrative Hearings have ruled repeatedly that the program is not liable for Medicaid spending.

That’s what happened in the case of Fatema Shakir, who entered the world when no one was looking. No doctor or nurse was in the delivery room, and her mom, Allyson Williams, was so numbed by pain blockers that she didn’t realize she had given birth in her hospital bed. Fatema, severely brain damaged, was found under the covers with no heartbeat.

Although revived that day in June 2007, Fatema would be left with profound brain damage rendering her unable to eat or breathe without tubes.

“What happened to Fatema shouldn’t have ever happened,” Williams said. “That shouldn't have ever happened.”

Fatema’s parents fought NICA compensation at first, arguing that there was no doctor present when she was born on June 3, 2007. Staying out of NICA might have enabled the parents to pursue a malpractice suit they filed in 2008.

But the NICA statute only requires a participating doctor — one who paid the $5,000 annual premium — to have provided obstetrical services any time during labor, delivery or resuscitation immediately after birth in order for the case to qualify for compensation.

In August 2013, Fatema’s parents abandoned their suit and accepted NICA benefits. As the case dragged on in administrative court, and Fatema’s needs grew more intense, Williams said she felt pressured to accept NICA and was relieved to get help no matter where it came from. Williams was a single mom, unable to keep a job, she said, with other young children at home.

“It wasn’t Fatema’s fault, but I couldn’t work because she had all these doctors’ appointments, and if she got sick she couldn’t go to [out-of-home daytime nursing care], and that just took a lot.”

But the month after Williams had accepted NICA, Florida’s Medicaid program slapped Fatema’s parents with a $1.4 million lien for Medicaid benefits that covered Fatema’s long stay in the neonatal intensive care unit after delivery and her subsequent care.

Nearly four years later, Fatema died at the age of 9 on April 15, 2017. Her father, Muhammad Shakir, died later that year.

Prior to Fatema’s death, Williams asked an administrative judge to order that NICA pay off the lien. The judge said no, stating that NICA was not responsible for past expenses paid by Medicaid. Williams appealed the denial to Florida’s First District Court of Appeal, which affirmed the administrative judge’s decision.

Ronald Gilbert, an Orlando attorney who represented Williams, said that after his client accepted the NICA benefits, AHCA never enforced the lien. Williams did not pay the lien, Gilbert said, and there is no record that NICA paid it.

“The lien went away, which is just stealing from Medicaid, in my opinion,” Gilbert said, “particularly if the NICA program has [$1.5] billion in financial reserves.”

Fatema continued to rely on Medicaid after being accepted into NICA. Williams said she does not recall who paid for Fatema’s care — NICA or Medicaid — but that the costs were covered. She said both NICA and Medicaid treated Fatema fairly, but that she would have preferred to sue for her daughter’s injuries.

“No amount of money in the world can replace the amount ... my daughter should have been awarded,” said Williams, who is now 42.

Federal regulators say they have not issued any legal opinions, letters or other written guidance with respect to NICA or the Virginia Birth-Related Neurological Injury Program.

Rosenbaum, the health law professor at George Washington University, said programs like NICA are in theory beneficial, but only if you “take the step of aligning it with Medicaid policy.”

If DeSantis signs the legislative reform bill adopted by lawmakers in April, then the state’s Medicaid agency will begin a review of NICA’s potential liability. The legislation requires AHCA to deliver a report of its findings by Nov. 1.