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.

In what would mark a major reversal, Florida’s program for children born with severe brain damage is poised to drop a much-despised policy requiring parents seeking therapy and medicine for their kids to try to get it first from the state’s health care safety net for poor people.

Under the existing policy, the Florida Birth-Related Neurological Injury Compensation Association, or NICA, will only provide services or supplies if Medicaid says no and then only after all appeals fail — a bureaucratic gantlet that can take months.

The revamped NICA board unveiled new rules Thursday that, if approved at a later meeting, would undo that and also address parents’ complaints that the program placed its financial interests ahead of the welfare of frail and disabled children.

Families get to review the proposed changes before their expected adoption.

The move follows an investigative series this spring by the Miami Herald and ProPublica, which described how NICA had amassed $1.5 billion in assets — now almost $1.7 billion — while routinely denying requests for medical equipment, supplies, medication and nursing care to struggling families. The articles prompted a legislative overhaul of the program, as well as financial and operational audits. NICA’s executive director resigned, and its board was replaced.

Lawmakers had weighed dropping the Medicaid-first requirement in their legislation this spring, but NICA administrators fought aggressively against it, saying it would cost the program millions of dollars in medical care that Medicaid had previously covered.

“That particular provision will most likely impair NICA,” the program’s executive director, Kenney Shipley, told a legislative committee at the time. The Medicaid change was removed from the legislation.

Similarly, in a 2008 deposition, Shipley testified that if Medicaid were to stop covering care for participants in the program it “would make NICA insolvent.”

Neither NICA nor the Agency for Health Care Administration, or AHCA, which administers Medicaid in Florida, would provide figures for how much Medicaid has spent over the years on children enrolled in NICA.

But an agency analysis in 2020 cast doubt on Shipley’s dire prediction. Agency records for the period from January 2009 through Sept. 20, 2017, show AHCA paid around $35.8 million to provide care through Medicaid for 122 people with NICA coverage. That equates to less than $5 million per year.

Shipley’s tenure at the helm also is about to end: On Sept. 15, the day before NICA’s newly revamped board had its first meeting, she announced her resignation.

The Medicaid revision would discontinue NICA’s practice of holding itself out as the “payer of last resort” for medical care that also is covered by the joint state and federal insurer for needy and disabled Floridians.

Based largely on income, about 125 of NICA’s clients, some of whom now are adults, also qualify for Medicaid. Under NICA’s rules, though not state law, those families were required to seek reimbursement first from the taxpayer-funded safety net, then NICA last. Families covered by private insurance also were required to seek payment from their private insurer first.

The Medicaid provision was an onerous requirement, several families told the Herald, because Medicaid often makes parents jump through numerous hoops to get care, while NICA would then repeat the process.

In explaining the proposed change, a draft of the new parent handbook states: “Where a participating child is also enrolled in Medicaid, NICA will treat itself as primary to Medicaid in paying the participating child’s designated medical expenses that are covered by both programs.” This would be the case only for expenses incurred after the legislation was signed in June.

The proposed policy says it “does not waive” NICA’s position in a pending class-action lawsuit in which the program is defending itself in federal court against a whistleblower complaint that alleges NICA is violating federal law by making Medicaid shoulder the costs of millions of dollars in reimbursement.

Stephen Ecenia, one of NICA’s lawyers, told board members the program had begun discussions with administrators at AHCA to “coordinate” the proposed change.

NICA was created in 1988 to shield obstetricians from medical malpractice premiums that doctors considered too burdensome. Under the law, parents of children born with certain types of brain injuries may not sue their doctor or hospital for malpractice. In exchange, the law promises the families of such children a lifetime of “medically necessary” and “reasonable” health care through NICA.

One reform suggested Thursday by a new board member would appoint an ombudsman to represent the interests of about 220 children currently enrolled in the program. Renee Oliver, whose son, Ian, has been in NICA for 13 years, was appointed to the board in August. The board agreed to discuss the proposal at an upcoming meeting, after members had time to consider it.

Lawmakers had considered requiring NICA to appoint an ombudsman to advocate for families, many of whom had complained that administrators appeared to be more concerned about the fund’s bottom line than the health and welfare of children. But the provision was eliminated from the final bill, which was signed into law by Gov. Ron DeSantis in June. Then, this month, an audit performed by the Office of Insurance Regulation, an arm of the Florida Cabinet, recommended the appointment of a parents’ advocate.

Such an advocate would “provide participant families with an avenue to voice concerns and to formally resolve conflicts,” the audit said.

Also on Thursday, the board voted to negotiate a work agreement with Shipley’s proposed interim replacement. Board Chairman Jim DeBeaugrine recommended the appointment of Melissa Jaacks, who recently navigated the Florida Coalition Against Domestic Violence through a tumultuous transition after the Herald revealed that her predecessor received a salary of $761,650 from the nonprofit.

Jaacks will lead NICA for about six months until a permanent director can be found. Unlike Shipley, who had been an insurance adjuster, Jaacks has held leadership roles in state and federal child welfare and human service agencies. Among other positions, Jaacks had been the chief of staff for the U.S. Administration for Children and Families during the Obama administration.

Like the new board’s first meeting last month, Thursday’s meeting, held virtually to protect medically complex children and their caregivers from the pandemic, was heavily attended. As many as 60 people were logged in to the meeting, many of them parents. Some of the parents’ screens included children, or pictures of disabled children, in bed or in wheelchairs.

As he had at last month’s meeting, DeBeaugrine sought to reassure family members that the program’s primary goal was to protect the health of children in its care — even as a program auditor reported that the fund’s assets had grown by more than $200 million last year alone. “We are all very mindful of the fact that this [program] is about a lot more than numbers,” DeBeaugrine said.

The latter portion of Thursday’s board meeting gave way to a kind of open mic for parents with children in the program, as well as parents whose children are deceased.

Nearly a dozen parents spoke. One of them was Jorge Rodriguez, who said his child had only recently been accepted into NICA. He had read the recent Office of Insurance Regulation audit of the program and was surprised to learn that administrators often would determine whether to reimburse claims based on what they read in internet searches. Caseworkers, he said, shouldn’t be “basing decisions on Dr. Google.” He said “there needs to be a standard operating procedure for making a decision on requests families make.”

Jackie Amorim, whose daughter Vera Sophia Haggenmiller was born in April 2018, implored the new board to conduct a nationwide search — with input from family members — for the next executive director. “A lot of people who work for NICA do not have experience with children as disabled as our children,” Amorim said. “We would really like to see a director who really loves children like ours.”

“NICA could be a world of good for our families,” Amorim said, “but, instead, we are on our hands and knees begging.” Even after lawmakers voted unanimously to reform the program, she added, parents still must beg for help. “It gets so exhausting.”