Dan Bookhout was accustomed to fighting over almost everything in his dealings with Florida’s Birth-Related Neurological Injury Compensation Association, the program underwriting care for his severely disabled daughter, Arwen. The program’s “no, no, no culture,” he said, was “exhausting.”

So Bookhout thought it seemed “fishy” when administrators offered, without a fight, to buy or lease a nearly $30,000 robotic device to help his then-5-year-old walk. And when administrators asked for his help to promote the device to other parents.

What Bookhout didn’t know at the time was that the program was being investigated by the Miami Herald and the nonprofit newsroom ProPublica for its stinginess with parents — and NICA administrators, aware of that fact, apparently wanted to get out ahead of what they expected to be tough findings.

Months before approving Bookhout’s request, NICA had turned to a public relations firm to build goodwill and try to change its public perception.

Nearly $200,000 was earmarked for a PR contract with Sachs Media at the same time as NICA was rejecting parental requests for wheelchairs, therapies and in-home nursing. Although the CEO of Sachs Media says the firm’s work helped usher in reform in its own way, parents and lawmakers say the contract represents one more questionable decision by NICA’s past management.

The PR contract made sense at the time to NICA’s administration, given the questions it was receiving from the Herald.

“The Miami Herald has been conducting an investigation into NICA for several months, submitting numerous requests for public records and interviews,” Ryan Cohn, a Sachs executive vice president, wrote in a December 2019 proposal to NICA. “We see this as the path forward to win in the court of public opinion and to protect your mission and the future of the organization,” he said in an email to which the plan was attached.

The public relations firm helped NICA place a glowing op-ed in a Florida newspaper and shepherded a second story about NICA’s offer to buy robotic gait trainers for children who couldn’t walk. Along the way, NICA gave the public relations firm something it had refused to give to the families themselves: the contact information for other families in the program.

For decades, families of Florida children born with catastrophic brain injuries wanted to connect with each other — for ideas and strategies, for advice on equipment and therapies, to buck each other up amid crises or just to vent. NICA administrators refused to share their names, citing the federal patient privacy law called HIPAA, which keeps individuals’ medical information confidential.

“It was an intentional effort to keep families separate,” said Bookhout. “Isolating us was a way of consolidating power.”

In the end, state lawmakers insisted that administrators do what families demanded — listen to parents, and change. The Legislature expressed outrage and demanded an overhaul after a series of stories was published by the Herald and ProPublica.

A crucial byproduct of that transformation is that NICA families are now finding each other, able to talk to each other, to support each other — and are being heeded by the newly reconstituted NICA board, which for the first time includes a NICA parent and an advocate for people with disabilities. The parents have created a Facebook group to share experiences. NICA is hiring an ombudsman and is considering creating a parents’ council.

At the NICA board meeting this month, the newly appointed board chairman told parents: “You have been heard.”

Ron Sachs, the founder and CEO of Sachs Media, said the contract was never merely about “buffing” NICA’s image with families, policymakers, the public and reporters. His staff interviewed a “handful” of parents in the program to make their concerns known to administrators — hence the need for the names of NICA parents, which NICA made him promise not to share. His goal — in addition to improving the program’s messaging — was to foster positive change, he said.

And Sachs said it succeeded by improving NICA’s website and benefits handbook and helping leaders communicate better. The firm also championed NICA’s effort to increase its initial payment to parents from $100,000 to $250,000 — a centerpiece of the legislative reform package.

“They’re a better organization now,” Sachs said.

Sachs’ staff fell short of some of their goals, he said, because NICA was like every other large organization: It has lawyers, government relations staff and a board of directors.

“Our job is to give them our best advice and counsel, but we can’t obligate them to enact them,” he said. “We did not have the ability to wave a wand and have things go our way. We could not singularly make anything happen.”

Kenney Shipley, NICA’s executive director until she resigned this summer, declined to speak with the Herald and ProPublica.

“Culture of Secrecy”

The Florida Legislature created NICA in 1988 in response to pleas from obstetricians, who claimed their rising medical malpractice premiums were driving them from the market. The law precludes parents from suing when their children are born with severe disabilities from oxygen deprivation or spinal injury. In return, NICA was to provide “medically necessary” and “reasonable” care for the rest of a child’s life.

Many parents say, however, that NICA focused more intently on growing its nearly $1.7 billion fund than meeting the needs of its clients and their families. As the Herald and ProPublica reported this year, parents have had to fight over big-ticket items like wheelchairs and vans, and little things, too, from drugs to blenders that make food accessible to children with daunting disabilities.

When parents complained about NICA’s arbitrary denials or its exhausting approval process, they were often met with more resistance. One family was even tailed by a private investigator hired by NICA. Sometimes, administrators suggested families who disagreed with the program’s denial of treatment or services hire lawyers and appeal to Florida’s administrative courts, parents say. At times, NICA spent considerably more in legal fees fighting parental requests than it would have cost to provide the care.

“NICA barricaded itself as an organization, keeping its spears outward,” Bookhout said. “Their culture of secrecy [was] their knee-jerk reaction — their go-to.”

NICA’s deployment of the Health Insurance Portability and Accountability Act, or HIPAA, as a defense against helping families find each other was unnecessary, the program now acknowledges. The names of families in the program, along with addresses and other information, have been available via the Division of Administrative Hearings for three decades — just like records at other courthouses or their websites.

As the Herald investigated NICA, administrators continued to reject requests from parents. They wrote checks to Sachs Media.

Using Florida’s public records law, the Herald acquired hundreds of pages of emails and other records that opened a window onto NICA’s effort to paint a flattering self-portrait.

Ron Sachs knows the PR terrain in Florida politics well. He has represented a who’s who of private, nonprofit and government institutions, including The Florida Bar, the Florida Chamber Foundation, Alliance for School Choice, Disability Rights Florida, and the Florida departments of Children and Families, Veterans’ Affairs, Transportation and State, as well as the state Office of Insurance Regulation and the Fish and Wildlife Conservation Commission.

State agencies have agreed to pay Sachs Media nearly $1.5 million in recent years, in addition to three contracts involving the Department of Corrections and the Department of Environmental Protection that do not disclose a contract amount.

As part of the Jan. 7, 2020, NICA contract, Sachs was to provide “reputation management,” “strategic counsel and guidance,” “message development,” “thought leadership,” “media relations” and “op-eds and letters to the editor.” Sachs also was to redesign NICA’s website, something parents had been requesting for years.

Sachs began representing NICA that month, and ultimately was paid $199,200 over two years to persuade lawmakers, advocates and journalists that program administrators were doing everything they could to help children with severe brain damage and their parents. The contract ends Dec. 31, 2021.

About the time Sachs began representing the program, NICA parent Elizabeth Midland had about $500 in the bank and a 1-year-old daughter at home. Midland’s daughter, Jolee, has severe spastic quadriplegia, the result of a catastrophic brain injury. NICA was fighting over everything, Midland told the Herald: medication, therapy, a wheelchair, renovations to make her driveway wide enough for the SUV the family bought to accommodate a wheelchair.

“We had to refinance our house to get that taken care of,” she said. “NICA wouldn’t help.”

NICA, Midland wrote to her daughter’s Fort Walton Beach pediatrician in a Jan. 16, 2020, email, “is being a pain in my rear for reimbursement for ANYTHING.”

Meanwhile, NICA was gearing up its effort to convince the public that parents were happy with the way they were being treated.

“We are gonna rock for you!” Sachs wrote to NICA’s director, Kenney Shipley, nine days before Midland wrote to her daughter’s doctor.

“What a Great Voice to Support Us”

One of the pieces Sachs’ firm placed was a guest editorial that his team arranged. It was signed by Jack Levine, a Tallahassee children’s advocate who in 2020 received the Lawton and Rhea Chiles Advocacy Award.

“We’ve been working with child advocate Jack Levine on an op-ed about how NICA is one of Florida’s best examples of a fiscally sustainable program benefiting at-risk families,” Cohn, the executive VP, wrote in an email to Shipley 11 days before the op-ed was published. “Once finalized, we plan to submit it to the Tallahassee Democrat.”

“What a great voice to support us!” Shipley replied.

The Sept. 12, 2020, column was entirely favorable. “As our state policymakers look ahead, they must seek ideas that help at-risk families now and that remain fiscally sustainable in the future,” the column said, calling NICA “a shining example” of a “little-known program smartly created by state officials more than three decades ago.”

In an interview with the Herald, Levine said he was approached to write about NICA by Sachs, whom he’s known since at least the 1990s, when Sachs was a spokesperson for then-Gov. Lawton Chiles. “So I did a little bit of reading and a little bit of thinking about how it was relevant to the Florida budget picture.”

“I’ve got a 40-year relationship with Ron Sachs and his company, so we work very cooperatively together,” Levine added.

Levine said he was not paid by Sachs to publish the piece, and that it reflected his own thoughts. “I’m the drafter,” he said, “and it went under my name.”

Records obtained by the Herald, however, show parts of Levine’s op-ed appear to echo a February 2020 set of “primary talking points” drafted by Sachs’ staff.

From the talking points: “NICA’s creation helped to stabilize Florida’s medical malpractice insurance market, reducing malpractice insurance premiums and ending an exodus of obstetricians from the state.”

From Levine’s op-ed: “NICA helped stabilize Florida’s medical malpractice insurance market, reducing malpractice insurance premiums and ending an exodus of obstetricians from the state.”

From the talking points: “The fund has been bolstered by strong investment policies, and NICA has not raised provider assessments since 1988.”

From Levine’s op-ed: “Astoundingly, NICA has never raised those assessments since its creation in 1988 — thanks to strong investment choices that have bolstered the NICA fund.”

In a followup interview, Levine acknowledged that he received “background information” from Sachs that helped him write his column.

NICA emails obtained by the Herald show Sachs also arranged for a story about NICA to be published in Florida Politics, a web-based news organization devoted mainly to campaign, election, lobbying and government policy news — and read by influential people in Tallahassee. The story concerned NICA’s decision to offer robotic “exoskeleton” suits to participating children with severe cerebral palsy, a neurological condition that results in physical, and sometimes cognitive, impairments.

The story followed an article that appeared in Runner’s World, which celebrated the achievements of two disabled children who walked the equivalent of a 3-mile virtual race with the aid of a sophisticated gait-trainer device produced by Trexo Robotics of Toronto. (Sachs was not involved in that article.)

One of the two youngsters was Arwen Bookhout, daughter of Dan Bookhout, whose family lives in Elkton, near St. Augustine.

Arwen was born on July 11, 2015. Her umbilical cord had become compressed during delivery, leading to severe oxygen deprivation. She was accepted for NICA compensation in February 2019.

In the beginning, the Bookhouts were grateful for what NICA offered. The program paid hospital and medical bills, and it took much of the pressure off a young couple coping with a life-shattering event. “We were thankful we could breathe again and get on with our lives,” Dan Bookhout said.

But relief gave way to frustration when NICA constantly quibbled over payments. Eventually, the couple would seek forgiveness after the fact, rather than permission, by buying what Arwen needed and fighting over reimbursement later. That was the Bookhouts’ strategy when they contacted Trexo about leasing or buying a robotics suit.

The Bookhouts paid a $1,000 deposit, and Arwen’s robotic device arrived in early March 2020, Dan Bookhout said. He recalls being shocked when he first broached the subject with his NICA case manager. He expected a donnybrook. Instead, the case manager not only offered to get the suit for them and reimbursed the deposit, but also wanted to discuss hooking up other families, too.

“I’m writing to ask you for permission to share Arwen’s story … with the Trexo equipment on our website,” Shipley wrote in an Aug. 12, 2020, email. “I think it would be helpful to other families.”

“We were flabbergasted,” Dan Bookhout said. “The lack of pushback was shocking.”

As the devices arrived in the homes of NICA children, so too did NICA’s requests to parents to feature their children in a story. “The Lakeland Ledger is interested in running the story if any of the children live in Polk County,” one Sachs employee wrote to Shipley on Aug. 20, 2020. “Do you have any NICA families in Polk County?”

A month earlier, Shipley had told her lawyers that NICA and Cohn, from Sachs Media, were discussing “doing a story on this new type of equipment that we are authorizing and paying for. I think it’s a great story,” she added.

The story was published by Florida Politics on Aug. 24, 2020. It featured an 11-year-old boy whose Trexo device had arrived six days earlier. The child had taken 126 steps with the exoskeleton suit that first day, the story said, “a huge milestone.”

A day later, one of NICA’s lawyers wrote an email about the article: “Great work Sachs team.”

“A Sea Change”

By the summer of 2020, Dan Bookhout said, things seemed strange at NICA. He and his wife had been speaking with administrators only by email, to create a record when requests were denied. But here was Shipley and her staff offering to buy or lease pieces of equipment that cost nearly $30,000.

“It was such a sea change in their typical mode of operation,” he said.

This April, Bookhout began to understand what had been happening inside NICA that may have prompted Shipley to open the program’s checkbook. After the Herald and ProPublica began publishing their investigation, lawmakers demanded an overhaul of NICA. Its entire governing board resigned. Shipley, the executive director, quit under intense criticism.

The legislative overhaul marked the most significant change in NICA’s 33-year history.

And, for the first time, parents were speaking with each other — and to lawmakers, and to a new, larger board of directors that now included a NICA parent and an advocate for children with disabilities.

Sachs said he and his wife had lost family members, including his brother, in recent months, and they understand the value of sharing their pain with others who are struggling with similar emotions. “Connecting people who experience loss is a helpful thing to the healing process,” he said.

NICA, Sachs added, “was created to do good. And now, because of all the reviews, internally and externally, they are in a position to do better.”