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Parents of brain-injured kids tell Florida: Thanks for reforms but we need more help

Florida parents steered into a controversial compensation program for children with severe brain injuries told state investigators they often were treated like “liars” and “fraudsters” from whom administrators needed “to protect themselves.”

Administrators of the program “react to any request as if we are trying to commit fraud,” one parent told investigators. “It’s very disheartening to need something for your child, ask for that thing, and then be treated as if you’re a liar or worse for asking.”

The remarks were made as part of a survey of parents whose children’s healthcare is managed by the Birth-Related Neurological Injury Compensation Association, or NICA, a program created by Florida lawmakers in 1988 to protect obstetricians from the financial consequences of birth injuries that leave children severely disabled.

The 33-year-old NICA law prohibits the parents of children left catastrophically brain damaged by oxygen deprivation or spinal injury from suing their doctor or hospital. In exchange, NICA promises to reimburse families for all “medically necessary” and “reasonable” healthcare costs.

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The survey was commissioned last April by Florida Chief Financial Officer Jimmy Patronis in response to a series of stories, called Birth & Betrayal, by the Miami Herald and the nonprofit investigative newsroom ProPublica.

In response to the investigation, the Florida Legislature passed a sweeping law overhauling the program, including provisions that resulted in the complete turnover of NICA’s governing board.

Asked about the program’s makeover, three out of every four respondents said it was a “good first step” but additional changes are needed.

The investigation found that NICA had amassed nearly $1.5 billion in assets while the parents of severely brain-damaged children had to fight for medication, equipment, therapy and nursing care they felt had been promised in return for losing their right to sue their doctor and hospital for malpractice. NICA administrators sometimes paid thousands of dollars in legal fees fighting parents seeking hundreds of dollars in services or care for their children.

Following publication of the series, Patronis initiated an audit of NICA and asked his insurance consumer advocate, Tasha Carter, to survey nearly 220 NICA parents about their experiences in the program. Patronis asked Carter to advocate for parents who dispute claim denials or are unhappy with their treatment.

The Herald also reviewed emails from parents seeking help from Carter.

Kenney Shipley has headed Florida’s Birth-Related Neurological Injury Compensation Association since 2002.
Kenney Shipley has headed Florida’s Birth-Related Neurological Injury Compensation Association since 2002.

On Sept. 15, one day before the first meeting of the reconstituted NICA board, the program’s director of nearly 20 years, Kenney Shipley, abruptly resigned. She said she would remain on the job, as necessary, through January to ensure a smooth transition.

The previous board was dominated by healthcare industry and insurance representatives. Shipley is a former insurance adjuster.

Of the 219 families enrolled in NICA, 50 family members — fewer than one in four — responded to Carter’s survey, a state report said. Of the 50, 46% had children enrolled in the program more than 10 years. Another 24% had been NICA participants for at least 20 years.

The survey offered some positives for NICA, including: 65% of respondents called the program’s orientation efforts “very good and satisfactory,” 57% said they had been given a copy of the program’s benefits handbook, while 54% agreed that the handbook was “very useful and satisfactory.” Eight of 10 parents who responded said that, when they made a “repeat or routine request” of administrators, they got a decision within two weeks. Nearly 70% said NICA’s reimbursement process was “clearly outlined and easy to understand.”

In a prepared statement, NICA administrators said “while we were pleased the survey found that two-thirds of the 50 respondents [65%] were satisfied with NICA’s orientation process, we believe all 219 families in our program deserve only the best — starting when they enter the program and for the many years that follow — and we are eager to make necessary improvements to address the concerns of the other one-third.”

“Over the past year,” the statement said, “NICA leadership and staff have taken great strides to connect with and listen to the feedback of parents in the program. We hear their challenges loud and clear, and are committed to making necessary improvements, including better informing parents of the variety of benefits they are entitled to receive.”

“While the survey only captured the viewpoints of fewer than a quarter of NICA families, those families — and frankly, all our families — matter deeply to us. To best serve them, we do not take the Consumer Advocate’s findings lightly and look forward to working together over the months ahead.”

A recurring complaint from the responding families was that NICA administrators had no personal experience raising severely disabled children and yet they often viewed parents’ requests with distrust, sometimes bordering on contempt. Parents were required to file a signed statement with every claim, no matter how small, swearing under the criminal penalty of perjury that the claim was legitimate. (The “perjury statements” have since been phased out.)

Some parents said it appeared the program cared more about its bottom line than the welfare of the children in its care, and that families were not made aware of the benefits to which they were entitled.

For example, 55% of respondents said the program’s benefits handbook “initially matched their expectations, until they became aware of the many benefits that are not included.” Nearly seven in 10 respondents said NICA did not inform them when the program revised the parents’ handbook, which was designed to spell out parental benefits. One parent said parts of the handbook are “incomplete or deliberately vague.”

Referring to the benefits handbook, which was last updated in February 2020, one parent wrote: “It’s written for a lawyer. Not parents already living day-to-day in a state of duress.”

The survey asked parents what they believed NICA’s top priority was. Almost 40% said they thought NICA’s mission was to provide clients “compensation for medical care and rehabilitation.” But the remaining respondents said NICA prioritized maintaining its “financial status” (26%), protecting doctors (20%) and administering the fund “like a business, similar to an insurance company” (15%).

One parent said the program’s philosophy seemed to change after the family was accepted for compensation. “Before you are a NICA client, their priority is to protect the physician/institution from litigation,” the parent said. “Once you are a NICA client, their priority shifts to running it like an insurance company.”

In an email forwarded to Carter, the state insurance consumer advocate, one parent wrote to Shipley on June 23: “You spend your time trying to make NICA better for the doctors who pay into it, instead of spending your time creating checks and balances to make sure all of the families receive their benefits in a timely, organized manner. You spend your time working to provide less to NICA families.”

That complaint was repeated by parents who said their requests for care and services often were denied without explanation. Though 59% of respondents said they always got an explanation for a claim denial, 41% said that wasn’t always true.

Parents of children with severe disabilities and specialized medical needs said NICA didn’t seem to appreciate or understand that they wouldn’t be asking for those devices, therapies and medications if their children hadn’t been catastrophically injured at birth.

“Deny deny deny. We had to fight for unique but qualified items time and time again,” one parent wrote. “Exhausting. If and when [the claims were] finally approved, the language would be condescending, as if [we were] lucky to receive.”

Wrote one parent: “Often we get denials like ‘NICA doesn’t cover that.’ But why not? For example, dental [care] is not covered, even though dental issues are common and the NICA statute does not exclude dental. So NICA just decided the answer is no.”

Another complaint stated: “When the lack of clarity and consistency concerning explanations is pointed out, instead of responding with helpful information, leadership resorts to manipulative tactics in an attempt to redirect and/or end the conversation.”

In an April 13 email to Carter, a father echoed the complaint that only the parent of a similar youngster could understand the challenges and heartaches of raising a catastrophically disabled child — and that NICA administrators often seemed only to make things worse.

“As a parent, I find myself having trouble resolving the disparity between the volume of financial resources, the very small number of kids participating and the difficult approval processes for parents to get necessary items and services covered.

“My wife and I often discussed what an incredible opportunity NICA has to improve the lives of some of the most medically needy kids in our state and be a support for the parents, but NICA doesn’t embrace it,” wrote the father, who lives in Pensacola. “Instead, they fill the role of that difficult insurance company one has to wrestle with after a medical visit.”

Responses to the survey suggest parents often were happy with the caseworkers who fielded their requests and worked with them regularly to manage their children’s healthcare. But quotes from parents in the survey report — names were not included, so it’s impossible to determine who is saying what — indicate discord between parents and administrators.

“Generally, the tone of communication with my nurse manager is quite helpful and supportive,” one parent wrote. “In contrast, the tone of communication with leadership — who often feign compassion — is in actuality manipulative and predatory.”

Lack of communication was a common complaint among parents who responded. Eighty-five percent said they had not participated in the program’s quarterly board meetings. When asked why, 56% “indicated they were not aware they have access to the meetings” and 28% said “they were not made aware” of them.

Prior to launching a redesigned website this year, NICA maintained a dismal online presence for parents. The site contained broken links to what were supposed to be helpful resources, and board meetings and minutes were posted long after meetings had taken place.

Carter sent NICA parents advance notice of the new board’s first meeting, which was held on Sept. 16, and provided interested parents a link to the meeting’s digital feed. More than 70 people attended the meeting, and about a dozen parents spoke — most of them expressing anger at how they had been treated.

But parents also appeared to be encouraged by recent and sweeping changes to the program signed into law by Gov. Ron DeSantis in June. The new law set aside a $150,000 supplement to every parent with a child currently enrolled in NICA, provided $10,000 in annual mental health benefits and another $100,000 for handicap-accessible home modifications, and ensured each child had adequate transportation.

It also required that the board include a parent currently in the program, as well as an advocate for those with disabilities.

NICA parents were asked their thoughts about the new law. Nearly 80% called it “a good first step,” but added “additional changes are needed.”