In a legislative session highlighted by culture war battles and redistricting, Florida lawmakers gave a measure of mercy to a group of parents whose children died of catastrophic birth-related brain injuries.

Following up on action taken last year, the Legislature voted to give $150,000 stipends to parents whose children were once enrolled in a state program called the Birth-Related Neurological Injury Compensation Association, or NICA, but had been dropped from the rolls when the children died.

Families of surviving NICA children received identical stipends last year as part of a comprehensive slate of reforms, but the families of children who died were left out, even though some had spent themselves into poverty trying to keep their children alive.

The reforms were implemented after a series of stories by the Miami Herald and ProPublica documented how parents in NICA had to beg for help from the program, which was supposed to provide “medically necessary” care to certain children left severely disabled by oxygen deprivation or spinal injury at birth. Parents complained that they had to plead, often in vain, for medication, specially equipped vans, in-home nursing care and home modifications, to which they were entitled under the NICA statute.

In addition to the $150,000 supplement, last year’s reform package provided a $40,000 increase in the program’s death benefit, a $10,000 annual stipend for family mental health care, an increase in the lifetime subsidy for home modifications from $30,000 to $100,000, and money for wheelchair-accessible vans, among other things.

Advocates claimed the reforms didn’t go far enough, and Sen. Lauren Book, a Democrat who leads her party in the upper chamber, filed a bill this year with several provisions designed to rectify that.

The bill, however, failed to secure a single sponsor in the House of Representatives, and Senate leaders declined to present it to any of the three committees to which it was assigned.

Supporters of the bill, including NICA’s current director, Melissa Jaacks, persuaded lawmakers to include a few provisions in a separate, sprawling bill that modified the statute governing the state Department of Health. The most significant measure was the one-time $150,000 payment to the families whose children had died.

The Health Department legislation that passed, which still must be signed by Gov. Ron DeSantis, also bolsters NICA’s ability to collect dues from doctors who are required to help financially sustain the program.

An August 2021 report by the Florida Auditor General, an independent watchdog who reports to the Legislature, said that, since 2016, administrators failed to collect more than $14.4 million in delinquent assessments from doctors. NICA staff told auditors that it didn’t make financial sense for the agency to collect from doctors individually but that it would file batches of lawsuits against them. No lawsuits had been filed since January 2018, the audit said.

Lawmakers created NICA in 1988 in response to demands from doctors who claimed high medical malpractice premiums were driving them from practicing medicine in Florida. The law immunized obstetricians from the consequences of a bad outcome by precluding families from filing malpractice suits. In exchange, parents were steered into NICA.

Obstetricians who participate in the program must pay $5,000 annually in order to be granted immunity from lawsuits. Other doctors licensed in the state are required to pay $250 each year to support the program, and hospitals pay $50 for every live birth. The assessments are invested, helping the fund grow.

The Herald-ProPublica series documented how NICA had amassed nearly $1.7 billion in assets while denying or delaying care to children who suffered profound brain damage at birth — often as the result of negligence.

To parents like Ruth Jacques of Orlando, who was prevented from holding anyone responsible for the 2018 death of her son, Reggie, this year’s legislation is a long-overdue acknowledgment of her pain.

“I am sad about my son,” she said. “I am strengthened to know that the voices of a few can be so loud.”

After her story was told by the Herald, Jacques attended NICA board meetings and spoke with state insurance regulators seeking to include the parents of deceased children in the ongoing NICA reform.

“It gives me hope for tomorrow,” said Jacques, who has given birth to two sons since Reggie died. “It is this strength and perseverance that I wish to leave as my kids’ greatest legacy.”

Providing the $150,000 supplement to parents like Jacques had been the “number one legislative priority” for NICA administrators after Book’s reform bill failed to gain any traction, Jaacks said. Still, the director added, there is much unfinished business, and “we will absolutely pursue additional legislation next year.”

Jaacks was hired in October​ when the program’s then-director, Kenney Shipley, resigned amid pressure. (Shipley has declined comment.) Jaacks and the new NICA board, brought in after the Herald-ProPublica investigation, are considering whether to extend to the parents of deceased children another benefit from last year: allowing them to have their mental health care covered.

“What these families have been through should never have happened,” Jaacks said of the 209 families who lost a child as a consequence of a birth injury.

Leanne Lewis, 28, of Keystone Heights, about 25 miles from Gainesville, lost her son, BradyJ Lee Yarbrough, on April 20, 2019. Brady had been born with severe brain damage and had suffered unrelenting seizures as a consequence.

Like Jacques, Lewis attended several meetings with NICA’s new director and worked for months to convince lawmakers that her suffering was no less real than that of parents whose living children still are clients.

“We begged them to view us as parents and to stop viewing our children as just another case,” Lewis said. “We wanted them to see us as human beings, not as a dollar sign. We cried to them.”

The supplement, she said, can never compensate her for her loss. But it will help her get on with her life.​

“There are 209 families that are going to be reminded that their children have not been forgotten,” Lewis said. “When your child dies, the only thing you want from other people is to remember them.”