Bill to reform Florida program to aid brain-damaged babies, their families passes key test

Parents of severely brain-damaged children covered by a controversial state program accused of “nickel-and-diming” struggling families would receive an extra $150,000 — and an array of additional benefits — under reform legislation preliminarily approved Thursday by the Florida Senate.

The bill, which encountered no opposition on the Senate floor, is intended to offer better protections and more financial relief for the roughly 215 clients — some of them now adults — whose medical care and in-home nursing is managed by the Birth-Related Neurological Injury Compensation Association, an obscure state program created by the Legislature in 1988.

The bill awaits another vote in the chamber — and a companion version has yet to be taken up on the floor of the House of Representatives — before differences between chambers can be ironed out and it is sent to Gov. Ron DeSantis for his signature. The Senate version’s provisions would take effect immediately.

NICA, as the program is called, was conceived as a buttress against rising medical malpractice premiums that doctors and their advocates claimed were driving obstetricians out of the state.

Under Florida law, the parents of certain children who were left “substantially” impaired both cognitively and physically from oxygen deprivation at birth are precluded from suing their doctor or hospital. In exchange, they receive a one-time $100,000 payment, and the promise of “medically necessary” and “reasonable” health care for the life of their child.

The legislation considered Thursday by the Senate increases that parental award to $250,000, retroactively — which means that each of the estimated 440 families that have received NICA compensation since the program’s inception in 1988 will get an additional $150,000. The bill also raises the program’s death benefit from $10,000 to $50,000, also retroactively.

As much as the bill will help families in NICA, it doesn’t go far enough, said Sen. Danny Burgess, a Zephyrhills Republican who sponsored the legislation.

Burgess’ original bill only raised the parental award. But after the Miami Herald and the nonprofit newsroom ProPublica published the investigative series Birth & Betrayal, which documented how NICA spends more on attorneys and investment managers than it does providing care for children, lawmakers reacted with outrage and a slate of reforms.

“There is in fact so much more to do and we will do it,” Burgess said. “What we can’t do is rush to some conclusions that we haven’t fully vetted that could damage a program that already is not benefiting those it was intended to serve.”

Burgess vowed to revisit the NICA program next legislative session and make additional changes once lawmakers have received audit reports from the Agency for Health Care Administration, Florida’s Chief Financial Officer and insurance regulators.

Sen. Gary Farmer, a Fort Lauderdale Democrat, urged his colleagues to go further now to reform NICA, which has $1.5 billion in assets but often denies care and slow-walks reimbursements.

“They’re treating this thing like it’s a personal savings account,” Farmer said of NICA administrators. “It’s a benefit fund. The whole purpose is to pay out the money to brain-damaged children.”

Farmer urged his colleagues to read the Herald’s reporting, saying lawmakers would be “shocked and appalled” by the series’ findings.

“These families suffer so much,” Farmer said.

Gayle Harrell, a Stuart Republican who has long been an advocate for children, asked Burgess what measures lawmakers were taking to shed light on the organization’s complex finances: “What are we doing to make sure we know exactly what’s going on financially in this organization that has accrued this huge amount of money and paid out so little for the children?”

Among other provisions, the bill:

▪ Requires the state to increase NICA’s governing board from five members to seven, adding both a NICA parent and an advocate for children with special needs. The current board members, all men, are either doctors, hospital administrators or represent insurance interests.

▪ Creates an ombudsman position for a NICA employee who is empowered to represent the interests of children and parents served by the program.

▪ Sets aside $10,000 a year for the immediate family members who live with a NICA child to get mental health treatment and counseling.

▪ Creates an appeals process for parents who seek care or services from NICA but are denied.

Lawmakers also spelled out specific benefits for individuals accepted into the program, including diapers and baby formula.

But an 11th-hour amendment from Burgess, the bill’s sponsor, removed other reforms lawmakers had added to the bill in Senate committee hearings, including a provision that required NICA to give parents a written explanation whenever the program denied a claim.

Farmer said he and other lawmakers met with NICA families who showed them letters and forms detailing reasonable requests denied by the program. Farmer said lawmakers asked NICA administrators about those denials.

“They said, ‘We pay this and we pay that,’ ” Farmer said. “Well, then put it in the statutes. If you pay it, you ought to put it in writing. I don’t think that’s wrong.”

Also withdrawn was statutory language requiring NICA to pay for doctors, hospital visits, therapies and other medical costs the program currently shifts to Medicaid, the taxpayer-funded insurer for low-income and disabled Floridians. The provision could have cost NICA “hundreds of millions of dollars,” NICA’s general counsel testified at an earlier hearing.

Farmer, whose own far-reaching amendment had been rejected earlier this week at a Senate Appropriations Committee hearing, insisted that lawmakers “have got more work to do next year” before he would be satisfied that NICA was doing its job on behalf of disabled children.

“I’m a little angry, and I’m a little indignant,” he said, over how senators weakened the legislation in the session’s waning hours.

Burgess said he had hoped the legislation could be more substantial, but the bill’s advocates thought it was more important to pass “immediate” relief than see the bill get bogged down in debate over more far-reaching reforms.

“We’ve done some intensive work to bolster this program but that doesn’t mean there isn’t more to be done,” Burgess said.

Audrey Gibson, a Jacksonville Democrat, asked Burgess whether anyone in state government regulated NICA, which is often described as a “quasi-government” program. NICA board members, for example, are appointed by the state’s chief financial officer and approved by the governor and Cabinet. But there is little routine oversight.

“They do have a lot of autonomy, and that may be a lot of the problem,” Burgess answered.