The NICA program was intended to reduce doctors’ malpractice bills and provide a dignified existence and financial cushion for families crushed by the delivery of an infant with devastating brain damage. But some parents report a program that’s both indifferent to their fears and hostile to their needs.

This article was produced for ProPublica’s Local Reporting Network in partnership with the Miami Herald. Sign up for Dispatches to get stories like this one as soon as they are published.

Now that the Florida Legislature and governor have taken action to overhaul a Florida program that serves families with brain-damaged children, its future could pivot on a state Cabinet member following through on his promise to make the program answer to the parents of disabled children.

Florida Chief Financial Officer Jimmy Patronis, whose office oversees the Birth-Related Neurological Injury Compensation Association, initiated an audit and an investigation of the program after the Miami Herald and the journalism nonprofit ProPublica published a series of stories this year showing how NICA had amassed nearly $1.5 billion in assets while frequently denying care to children it serves.

Patronis, who demanded that NICA “do better” the day the series began publishing, is expected to name at least five board members to oversee the program — three to replace members who resigned last month and two new ones authorized by a law passed in the most recent legislative session.

“For a public official, this is truly an opportunity to have real impact in a positive sense for the people this program was designed to benefit,” said Pat Wear, a former director of the Florida Advocacy Center for Persons with Disabilities who, as Kentucky’s commissioner of mental health, oversaw that state’s Traumatic Brain Injury Trust Fund. “He can do great things here by appointing people who have insight into these families’ tremendous needs.”

But Patronis, Wear said, faces a choice: He “can serve the system, or he can serve the people.”

On Tuesday, Patronis announced his first new board appointment, and the move suggests he may be listening to disability advocates such as Wear. He added Jim DeBeaugrine, who oversaw the state Agency for Persons with Disabilities before becoming a consultant and lobbyist. Recently DeBeaugrine served as interim CEO of the Arc of Florida, an advocacy group for people with developmental and intellectual disabilities.

In an interview with the Herald on Wednesday, DeBeaugrine said he anticipates the NICA board will undergo significant changes, both in its composition and in its orientation toward the children and families who depend on the program for care.

“I will be going into this with a critical eye, to change the focus of this organization,” DeBeaugrine said. “Everything about how it operates needs to be on the table. If I didn’t think that, I probably wouldn’t take the assignment.”

He added, “We have an opportunity to go in and make some fundamental changes in how the organization interacts with the families it serves.”

The leader of a Tallahassee-based advocacy group praised the appointment, saying DeBeaugrine will rightly focus on the needs of children and their families.

“He has a strong sense of wrong and right,” Lori Fahey, president of The Family Cafe, said of DeBeaugrine, who is the chairman of her board of directors. “His priorities are set on providing what is best for individuals with disabilities and their families.” The Family Cafe provides information and networking opportunities for people with disabilities and their families, and advocates for better care and services.

DeBeaugrine, Fahey said, has volunteered with the Special Olympics, as well as other service groups. For many years, he’s also cared for his brother-in-law, who is disabled. “Above all,” she said, “he’s a family member.”

Florida lawmakers created NICA in 1988 to immunize obstetricians — who claimed their malpractice premiums had become prohibitively high — from the consequences of a tragic birth that results in severe and lifelong brain damage. In most cases, parents are barred from suing the doctor who delivered their baby and the hospital where their child was born. In exchange, NICA promises to provide all “medically necessary” and “reasonable” care.

The Herald and ProPublica detailed how NICA earned more from its investments than it spent on profoundly disabled children who were routinely deprived of care, including medication, therapy, in-home nursing and equipment such as wheelchairs.

Within weeks of publication, Florida lawmakers rewrote the statute that governs the program, requiring administrators to cease delaying and denying care and making NICA more responsive to the needs of parents and family members.

Among other things, the new law says NICA must cover up to $10,000 a year in mental health care for family members of people in the program, spend up to $100,000 to make families’ homes accessible for wheelchairs and medical equipment, and make it easier for families to get and pay for care. The law also creates an avenue for appeal when treatment or therapy is denied.

It is a near-complete overhaul for an agency that has operated under the radar for 33 years, sometimes infuriating parents struggling to raise children with extraordinary needs.

Gov. Ron DeSantis signed the measure on June 21, and it took effect immediately. Now that the statute spells out how NICA must prioritize the health and best interests of children in the program, it’s up to the board of directors to set the tone for the program’s longtime administrators and case managers.

But the board, historically dominated by insurance and health care executives, is not functioning at the moment.

The legislation limits the tenure of the nonpaid board members to “no more than six consecutive years.” The provision affects four members of the board. Three of the four resigned in June, leaving the board without a quorum and forcing the cancellation of a meeting last month.

Those who resigned are Robert E. White Jr., who is the chief operating officer of The Doctors Company malpractice insurer; Dr. Steven Dukes, an obstetrician who is covered by NICA; and Bryan Anderson, vice president for government relations at hospital giant HCA Healthcare.

All had served more than six years consecutively. None of the three responded to an email from the Herald.

Filling at least five board seats presents Patronis with an opportunity to shape the program for years to come.

Even with its $1.5 billion in assets, NICA has remained one of the most obscure programs in state government, though certainly not free from politics and influence. The program has paid nearly $900,000 to lobbyists since 2011. It has paid nearly $200,000 to a public relations firm since 2020.

Though the new legislation greatly limits the discretion of NICA’s executive director, Kenney Shipley, to deny care and services to covered families, the Tallahassee-based program has not seen such a significant change in governance in its history. In the course of filling the two newly created board slots — one to be held by a NICA parent and another by an advocate for children with disabilities, which DeBeaugrine now fills — plus the three vacancies, Patronis can effectively transform the program’s oversight.

For some parents, a change in NICA’s management and culture is key to any meaningful reform, and that begins with the tone at the top.

“A change in leadership and governance is the only option,” said Michelle Perez, an Orlando-area mother of a 1-year-old boy in the NICA program.

“I hope that [Patronis] appoints board members who are qualified and impartial to both sides,” she added. Families served by the program “need a director to advocate for them too.”

NICA did not respond to a request for comment for this story.

As he seeks reelection to a second term, Patronis faces perhaps the most daunting task of his political career.

The son of a prominent Panama City family, Patronis managed his family’s seafood restaurant when term limits left then-House Speaker Allan Bense’s seat vacant in 2006. Patronis ran for the seat and won it, and he was reelected three times before he was term limited. His early endorsement of a little-known hospital executive, his longtime friend Rick Scott, for governor was rewarded in 2015 with an appointment to the Public Service Commission, which regulates utilities.

Scott propelled his career again in June 2017 by appointing Patronis — who has called Scott his mentor — to complete the term of Jeff Atwater, who resigned as CFO to take a similar job for Florida Atlantic University in Boca Raton. He beat his Democratic opponent, Broward businessman Jeremy Ring, in the 2018 election.

As the state’s top financial watchdog, Patronis’ office oversees NICA, but he had not previously made it a priority. In January 2019, shortly after Patronis’ election, the mother of a young woman with severe physical disabilities whose medical care is reimbursed by NICA asked Patronis in an email to “take notice, and, hopefully, take action” to reform the program.

Patricia Parrish of Titusville, whose daughter Delaina is now 23, told Patronis that NICA administrators showed favoritism toward some families, failed to apprise parents of benefits to which they were entitled, had failed for years to update written guidelines — when there were any — and lacked transparency.

“Our only option for ANY grievance, no matter how big or small, is [to appeal to an administrative judge], which is a burdensome and excessive demand on a parent whose job is the caregiving for one who is severely disabled,” Parrish wrote.

She added, “I don’t believe the original intent of NICA was to alienate and burden families who best know the needs of their children.”

Parrish, whose husband, Jesse J. Parrish III, has applied to be on the board, told the Herald that Patronis never responded.

The day the series was published, Patronis vowed in a prepared statement to “do some good on behalf of these families.” He initiated an audit of NICA’s finances, spending and investments, and announced a separate investigation by his office’s consumer advocate, Tasha Carter.

“NICA has got to do better,” Patronis wrote in the statement. “I cannot imagine or understand how difficult it is for families of children with neurological injuries, but we’ve got to figure out a way to make things easier for them.”

He added, “This program needs to treat these children with kindness instead of treating them as though they’re a liability for shareholders.”

After the resignations, the two remaining NICA board members were Dr. Samuel Wolf, an obstetrician who is covered by NICA and has served on the board since 2020, and Charles Lydecker, Foundation Risk Partners’ CEO, who has been on the board since September 2008. Lydecker, chairman of the board, has not only served more than six consecutive years, but his tenure would appear to be in jeopardy for another reason: The new law explicitly bars any representative of “a casualty insurer” from serving on the board’s “citizen” seat, which Lydecker now holds.

On April 30, one day after lawmakers passed the NICA reform bill, Lydecker contributed $1,000 to Patronis’ reelection campaign; four executives of his Foundation Risk Partners insurance agency added an additional $4,000 that day. Lydecker did not respond to phone calls and an email.

Previously, on April 5, Lydecker gave $25,000 to a political action committee, Treasure Florida, that is affiliated with Patronis. During the 2018 election cycle, Foundation Risk Partners gave $30,000 to Patronis.

Patronis’ spokesman, Frank Collins, declined Friday to discuss whether Lydecker wishes to remain on the board or whether Patronis will seek his removal. When asked whether the campaign contributions from Lydecker and his firm might influence those decisions, Collins said, “Absolutely not.”

“The appointments process is ongoing,” Collins said.

Michelle Perez, the Orlando-area NICA mother pushing for a clean slate at the top, said she experienced firsthand the difficulty getting needed equipment for her son, who turns 2 on Monday.

Perez said a hematoma at birth compressed her son’s spinal cord, resulting in permanent neurological damage. Jace cannot walk or talk, and he is cognitively impaired, though she does not believe severely.

Because Jace is so young, Perez said, both Medicaid and the boy’s private insurer rejected her request for a wheelchair, though both Jace’s pediatrician and physical therapist said he needed one. Jace is so floppy physically that he slumps in his stroller, and his doctor fears this will lead to scoliosis, a serious risk for youngsters in his condition.

“They were pointing fingers at each other,” she said. “We were getting the runaround.”

After reading stories in the Herald, Perez said, she contacted the consumer advocate in Patronis’ office, who called NICA on her behalf. She said NICA then agreed to pay for the wheelchair, which should be ready in about a month.

Update, July 29, 2021: Charles Lydecker, chairman of the Birth-Related Neurological Injury Compensation Association, resigned from the board on Wednesday, citing recent legislation that limited the service of board members to six years. Lydecker had served for nearly 13. He was the fourth member to resign from the board since last month.