Florida lawmakers endorse wide-ranging reforms in program to aid brain-damaged babies

Lawmakers backed a series of sweeping reforms Monday to a controversial state program that protects doctors from medical malpractice lawsuits by limiting compensation for children born with catastrophic brain damage.

Legislation to overhaul the Birth-Related Neurological Injury Compensation Association was approved unanimously Monday afternoon by powerful committees in both chambers of the Florida Legislature: the Senate Appropriations Committee and the House Judiciary Committee. From there, the bills head to the floor of the Senate and the full House.

NICA, as the program is called, came under fire earlier this month when the Miami Herald, in partnership with the investigative reporting non-profit ProPublica, began publishing a series of stories, called “Birth and Betrayal,” detailing the plight of families in the program, some of whom say they are forced to plead for medical care and services their children need.

Among the reforms endorsed by the committees: adding at least one parent of a covered child to the NICA board of directors, as well as a children’s disability advocate; creating a position for an ombudsman who would advocate for families; money for mental health counseling for parents; and statutory language requiring NICA to cover doctor, hospital and other medical costs that the program currently shifts to Medicaid, the taxpayer-funded insurer for low-income and disabled Floridians.

Lawmakers in the House and Senate heard testimony from parents who expressed gratitude to NICA for helping them face hardship — as well as from parents who said the program wears them down by questioning and denying requests for care.

The obscure state program has amassed nearly $1.5 billion in assets while delaying or denying help to some families, all of whom were barred from pursuing lawsuits against the doctor or hospital that delivered their child.

Kenney Shipley, NICA’s executive director, said she supports the reforms approved by the House Judiciary Committee. But Shipley, who has led NICA since 2002, urged lawmakers to oppose one provision: a measure forcing NICA to pay first for doctors, hospitals and other medical care instead of serving as the “payer of last resort” behind Medicaid.

NICA is currently defending itself in federal court against a whistleblower lawsuit that alleges the program is violating federal law by making Medicaid shoulder the costs of hundreds of millions in reimbursement. The lawsuit is pending.

“That particular provision will most likely impair NICA,” Shipley said. “All of the others are things that we’ve looked at and we can quantify and say, ‘Yeah, we want to do those and we can do those and that would be great’.”

Shipley denied an assertion that NICA is secretive in its dealings and told lawmakers that the program currently posts board meeting agendas seven days prior to their scheduled dates and minutes of past meetings. However, the most recent board meeting announced on NICA’s website was from December 2020. There is no agenda for that meeting, or minutes. NICA has had at least one additional board meeting since then.

While Shipley defended the program, parents whose injured children are covered by NICA testified about their personal experiences.

Charity Butler, the mother of a 6-year-old boy, Grit, whose care is subsidized by NICA, spoke in both legislative chambers, bringing with her a thick binder of documents she said she needed to provide to program administrators when seeking reimbursement for her son’s care.

“That is hours upon hours upon hours of tears and work and push-back,” Butler said in the House chamber as she held up the binder.

“NICA is failing families, namely by the manipulative culture of claims denial that uses bureaucracy to stymie families from access to the funds that they need,” she said.

NICA, she added in the Senate chamber, “doesn’t even cover my son’s pediatrician bill.”

Butler said she pays $10,000 out-of-pocket each year to subsidize nursing care for her son because NICA’s reimbursement rate for in-home nursing care is so low that she can’t hire qualified nurses.

Butler said she wanted the program to “operate with transparency and treat parents with dignity.” She added: “Ours is an exhausting way of life.”

Jayme O’Connell of Old Town, 40 miles southwest of Gainesville, said she is grateful for NICA but urged lawmakers to make the program more responsive to parents and families rather than the interests of doctors, hospitals and insurance companies.

O’Connell brought her 4-year-old daughter, Ivy, who is in the NICA program. Ivy’s father, Ian Kleiner, and Ivy’s brother and sister were also there.

Speaking in both chambers, O’Connell asked legislators to help make the approval process easier for families because NICA currently requires letters of medical necessity, denials from insurers and other documentation before it will approve many expenses.

“Our number one ask,” she said, “is that our children become the number one priority in NICA — not the doctors, not the hospitals and not the shareholders. … Treat our children number one.”

Rock and Shawna Pollock of Anna Maria Island, on the Gulf Coast, spoke in defense of NICA, telling lawmakers they had learned to navigate NICA using the program’s handbook, which does not list all of the benefits available to families.

“I think a lot of the families don’t understand,” Rock Pollock said in the House before also testifying in front of the Senate committee. “It’s on the web page — anything that’s medically necessary to deal with the injury to the child.”

Pollock called NICA “the best thing” that ever happened to his son, Rock Jr., now a teenager, and he credited doctors and therapists with knowing “how to write” letters of medical necessity that will persuade NICA to cover claims for his son’s care.

“You have got to have a huge support group,” he said. “It takes doctors. It takes therapists to write these letters in order for you to be approved.”

Michael Devine, whose daughter Cyra was accepted into NICA in December 2011, said many parents of catastrophically brain-injured newborns are misled by attorneys who urge parents to resist inclusion into NICA, promising to seek a lucrative settlement or verdict in the courts.

Devine also spoke to both the House and Senate committees and said the administrative process of applying for NICA is more efficient and less contentious than a civil lawsuit.

“Going through one of these litigation processes is scary,” he said in the House committee hearing. “The NICA process is not.”

Like Pollock, Devine said many families are misled into thinking that a civil lawsuit will adequately provide for their injured child.

“You get $3 million up front, and you don’t know how to manage it … then you have no money left. Your child has nothing. You’re back to square one.”

Devine said Shipley “goes above and beyond” to help approve claims for his daughter’s medical care, and he cited as examples a beach-accessible wheelchair and physical therapy sessions that NICA has covered.

“I’ve never had NICA reject anything routinely,” he said.

But several lawmakers in both committees had done research of their own, and expressed dismay — even outrage — over the way families said they had been treated.

Danny Burgess, a Zephyrhills Republican who co-sponsored the Senate bill, said families “rely on NICA for everything from diapers and feeding tubes to beds.” And the program “failed families time and time again.”

“It is time for the Legislature to step in,” Burgess said. “We have to work together to fix these wrongs.”

Said Lauren Book, another Senate sponsor: “These parents cry every single day — not because of their child’s severe birth-related disability, but because of their dealings with NICA. Because they are having to fight tooth and nail” for care.

The despair she heard from NICA families who contacted her “reveals the utter brokenness of this program,” Book said. The legislation, she said, would ensure “what I believe is the absolute bare minimum apology we owe these families in this state.”

Sen. Gary Farmer, a Fort Lauderdale Democrat, argued in favor of adding a parent on the board, and then asked: “Are we really going to vote against that?”

NICA “Is doing nothing but acquire and hold onto money” that should go to “needy families out there who need benefits,” he said.

Rep. Dianne Hart, a Hillsborough Democrat, said she had spoken privately with NICA parents who had showed up to speak at the hearing. She urged Shipley to help those parents and families who may not understand how to navigate the program or who may not have the personality or courage to complain.

“You all have to understand that when somebody has a child that really needs that help that they shouldn’t have to have 20 physicians write a note,” Hart said.

Shipley replied: “What happens is I think families get overwhelmed because there are so many things that they have to look at … We’ve had better luck with the families that get their pediatrician to write the recommendation.”

When Shipley and some NICA parents emphasized that the handbook holds the key to understanding the program’s benefits, and that it is available online, Hart reminded them that not all families have the same resources.

“I would just like to say to NICA: Everybody doesn’t have internet access,” she said. Hart told Shipley she wants to see manuals distributed to prospective parents at the hospitals where they deliver.

“My nephew was born like that, so I know about a baby not having what they need and how hard it is to navigate these waters,” she told Shipley, who spoke only to the House committee. “When people say it’s easy, it’s not. I’ve been there personally so I know it’s not. … Make this easier … for families that don’t know how to navigate the waters.”

Parents whose children are accepted into NICA receive a lump sum of $100,000 from the program and a promise of “medically necessary and reasonable” care for the lifetime of the injured child. By shielding doctors and hospitals from liability for such injuries, NICA reduces malpractice insurance premiums for physicians — the law’s stated intent when Florida legislators created the program in 1988.

In advance of Monday’s hearing, Shipley provided lawmakers with a “correcting the record” memo in response to the published articles in which she said NICA has served families well. She said the agency “wholeheartedly supports” increasing the one-time payment to $250,000 and also favors adding a parent to the NICA board, a measure she had previously rejected.

Shipley said an average NICA family receives $4.9 million in benefits during their child’s lifetime. The money comes from dues paid by doctors and hospitals, not taxpayers.

Critics among the lawmakers were not convinced, although they said NICA needs to be reformed, not eliminated.

The reform legislation went up for debate first in the House Judiciary Committee. Committee members agreed to swap an original bill — which would have only increased the one-time payment to parents from $100,000 to $250,000 — for a sprawling amendment. Representatives in the committee differed over whether NICA should continue to rely on Medicaid, which a federal judge in 2014 said was so poorly funded that children insured by it often receive inferior care.

About an hour later, the Senate Appropriations Committee approved reform legislation unanimously. Senators heard testimony from NICA’s lawyer, as well as industry lobbyists, that an amendment that would “sunset” the program in 2026 — requiring lawmakers to pass an entirely new law — would effectively kill NICA.

“Once the sunset is in, it’s Armageddon,” said Mark Delegal, who was representing two medical malpractice insurers. “Doctors and babies need the program,” he added.

Delegal acknowledged that NICA had “been nickel and diming” families, though he also said he hadn’t “been outspoken about it.”

“We need to fix it,” he said of the program. “It needs to be more robust, and less stingy with its money, in my opinion.”

Also Monday, the state’s top financial regulator, Chief Financial Officer Jimmy Patronis, issued a short statement updating several initiatives from his office designed to reform the program.

Patronis said he had issued a “directive” to his office’s consumer advocate, Tasha Carter, “to engage in advocacy efforts on behalf of” NICA families. The directive, he wrote in a statement, was to “coordinate directly with families” in the program and advocate for them before the Division of Administrative Hearings, which resolves NICA disputes.

“These families have been through so much already,” Patronis wrote, “and the idea that they need a doctor’s note for every little request” is something Carter can help fix.

Patronis said he also is speaking with lawmakers to pass the pending legislation, including his call earlier this month to add a NICA parent to the program’s governing board.

Though truly reforming NICA will require changes in state law, Patronis wrote, his office can “do some good on behalf of these families in the short term.”