JACKSONVILLE, Florida — Over two decades, Choi “Julie” Nguyen bounced from one low-paying job to the next: dishwasher, custodian, manicurist. As a single mom raising two daughters and a profoundly disabled son, Nguyen could never hold a job for long.

Inevitably, the nurses Nguyen relied on to care for her son, Justin, would arrive late or not at all. Who would suction his mechanical airway, fill his feeding tube or turn him in bed to prevent pressure sores? Who was going to sleep on the couch at the hospital when Justin had surgery or fought life-threatening infections?

Ultimately, Nguyen faced the impossible choice of holding down a job and paying the bills — or looking after Justin and being constantly, hopelessly broke.

Florida’s Birth-Related Neurological Injury Compensation Association had agreed to help Nguyen shoulder the crushing financial weight of raising a child whose oxygen deprivation at birth left him catastrophically brain-damaged.

Under NICA’s own rules, she should not have had to choose between parenting and a paycheck.

State lawmakers created NICA in 1988 to stem what the law’s advocates called an exodus of obstetricians fleeing Florida and its high malpractice insurance premiums. The law holds down insurance costs by shielding doctors from potentially ruinous malpractice awards for birth injuries like Justin’s, which require a lifetime of medical care. It also forecloses lawsuits from parents like Julie Nguyen.

In exchange, NICA agreed to compensate her claim in 1998 with $100,000 upfront and a pledge that future expenses for her son’s “medically necessary and reasonable” care would be paid.

In October, Nguyen and her daughters, Jessica and Jennifer Pham, 32 and 31 respectively, learned — from Miami Herald reporters — that NICA offers many more benefits than they ever knew were available.

Though Jessica and Jennifer Pham long had told Justin’s NICA caseworkers about the family’s struggles, they said NICA never offered, nor even mentioned, the one thing that would have made the greatest difference in their brother’s life: a steady paycheck for Nguyen for caring for her child. It is a NICA benefit lawmakers authorized in 2002, when Justin was 6.

Now 24, Justin has lived far longer than doctors predicted. It has not been an easy journey, Jennifer Pham said.

“It always felt like we were alone in this,” she said. “Had we known about all these benefits, things would have been easier.”

NICA administrators would not agree to an interview but answered questions about Justin’s family by email after Jennifer Pham formally waived privacy protections.

Administrators said they weren’t aware Nguyen, 60, was having problems with in-home nursing because it was being paid for by Medicaid, a separate state insurer for low-income and disabled Floridians. “NICA also would not have been independently aware if Ms. Nguyen was having difficulty maintaining employment,” the program added.

In 2004, NICA said, the program mailed a benefits handbook to all families in the program — marking the first time in the program’s history that benefits were spelled out in writing for them. Nguyen, a Vietnamese immigrant with a limited command of English, could not read it.

Although 20% of Floridians were born in another country, according to the Census Bureau, the NICA handbook is printed only in English.

Jennifer Pham said NICA absolutely knew the family was struggling with nurses, the insurers that administer Medicaid’s benefits and Justin’s constant hospitalizations — as reflected in more than 8,000 pages, obtained by the Herald and ProPublica, documenting NICA’s interactions with the family.

In October 2020, one day before she spoke with the Herald for the first time, Jennifer Pham wrote to NICA pleading for help with nursing as the coronavirus pandemic made caregiving a challenge. The younger of the sisters had made similar complaints to Justin’s caseworkers in the past, including in August 2017 when she had the staffing agency send NICA a list of dates that nurses had missed their shifts, emails show.

“We don’t have any shift nurses and it’s been a struggle working full-time from home and caring for Justin,” Jennifer Pham wrote in the Oct. 21, 2020, email to Justin’s caseworker. “Finding quality nurses in adult care is difficult,” she added two days later.

NICA’s caseworker had only sympathy to offer — not help. “I am so sorry there is such difficulty with finding nurses right now,” she replied on Oct. 26, 2020. “I hope the situation improves soon.”

Program administrators have had the chance to do more than hope that things improve. But when state legislators proposed reforms to strengthen the program for families, NICA worked to put an end to the proposal.

A 2013 bill would have required NICA to provide families with an annual update on available benefits for their child, and it would have given parents something they have lacked from the program’s start: a seat on NICA’s board of directors, which is made up exclusively of health care industry and insurance interests.

Internal emails obtained by the Herald show that NICA’s executive director, Kenney Shipley, considered the effort “pretty silly.” In one email to a past president of the Florida Obstetric and Gynecologic Society and a lobbyist, Shipley wrote that “we are not here or funded to ‘promote the best interest’ of the children.” The bill died before reaching the Senate floor.

Justin’s family was oblivious to all that. They were busy raising Justin.

Building Trust

Program administrators knew Justin’s injuries were profound soon after he was born at University Medical Center, now UF Health Jacksonville, on Sept. 17, 1996.

Labor lasted 16 hours, the delivery complicated by the umbilical cord being wrapped around his neck, according to medical records. Doctors predicted that he might live a little more than a decade.

According to a note in Justin’s medical records, NICA’s pediatric neurology consultant reported in June 1998 that “as Justin’s brain damage is quite severe, he will likely be bedfast” — unable to leave his bed.

“Child is at near-vegetative state — physically and mentally,” the notes say. “Fetal distress was present early in labor but continued in labor,” the notes say, underscoring the word “continued.”

The notes add: “Post natal course was a disaster.”

Justin’s diagnoses included cerebral palsy, spastic quadriplegia, epilepsy and neuromuscular scoliosis. Because NICA is a no-fault compensation fund, Nguyen need not have determined who was responsible for his injuries to qualify.

Jennifer and Jessica Pham, 6 and 7 when Justin was born, had to grow up fast to help meet the needs of their brother. He would spend the vast majority of his time flat on his back, and he had to be properly hydrated and turned regularly to prevent pressure sores. He became the focus of the family’s life.

As caregivers, Justin’s mother and sisters had more grit and devotion than training and resources. Because of their mother’s limited English, the sisters had to deal with NICA. Jennifer Pham said it was she who called NICA in tears in 2002, pleading for help after it became increasingly difficult to take her brother to doctor appointments strapped in only by a shoulder harness. Although NICA would provide the van, it took almost half a year from when it was requested in writing, the family said.

The sisters learned to crush, mix and monitor Justin’s medications, feed him with a syringe, bathe and dress him. And they learned to relate to Justin through touch and sound and by reading the subtle cues — his eye movements, his breathing patterns, his faint facial expressions.

“You’re guessing whether he’s in pain, if he’s thirsty, if he’s too hot, if something is pinching his side,” Jennifer Pham said.

The family’s primary interaction with NICA was submitting receipts for out-of-pocket expenses, Jennifer Pham said. Sometimes it took months for NICA to reimburse them for items the program could have paid for directly, the sisters said.

In addition to the van, NICA paid a nurse five hours each week to help coordinate Justin’s care from 2012 to 2017. In early 2020, NICA also agreed to pay for Justin’s twice-weekly physical therapy.

Jennifer Pham emphasized that the family is thankful for that and the other help NICA has provided, including the $100,000 payment that all NICA families receive as compensation for not being able to sue. The money helped her mother buy a three-bedroom home in Jacksonville.

“I don’t want to sound ungrateful for the things that NICA has done for us,” Jennifer Pham said. “They have done things for us that have contributed to Justin’s life in good ways.”

But NICA has always been a passive participant in Justin’s care, she said — aware of Justin’s needs but offering to help only after the family had exhausted every other resource.

“Why do we have to beg for it?” Jessica Pham said. “We’re not asking for any more than what they said he was going to get.”

While NICA makes families use every other available payment source before the program will reimburse, Medicaid does the same thing. That makes for complications.

It meant the family had to ask Justin’s doctors to write letters attesting to every item’s medical necessity, secure a denial letter from a Medicaid insurer and then appeal, which sometimes required a hearing. The process was convoluted and could take months of follow-up and familiarity with complex bureaucracies.

NICA also insisted that caregivers, equipment providers and other vendors be compensated at the same rate that Medicaid pays, though the Florida Medicaid program’s pediatric reimbursement is so low that some doctors refuse to accept Medicaid patients. Justin’s records, for example, show a physical therapy group balked at the billing rate, requiring the Nguyen family to find another.

In December 2014, a federal judge said Florida’s Medicaid reimbursement rate was preventing some needy children from getting care. A settlement between the American Academy of Pediatrics’ Florida Chapter, which had filed suit over the payment rates, and state health administrators was intended to improve reimbursement — and quality of care.

“Justin Was Cheated”

In October, Herald reporters told Jennifer Pham that her mother could be paid for watching Justin — and that it was a long-standing policy. Pham, a law school graduate, checked it out herself and confirmed it was true.

She wept.

It was one of many things the family says it knew nothing about, benefits ranging from $30,000 in home renovations to accommodate Justin’s disabilities to $500 a year in therapeutic toys that could have been reimbursed. And that they could have been reimbursed for trips to and from the doctor and hospital.

Some of those provisions are in the 38-page benefits manual, some not. While Nguyen couldn’t read the book, her daughters could have — but were in first and second grade when Justin was accepted into NICA.

“Justin was cheated out of so much that was readily available for him,” Jennifer Pham said.

On Dec. 7, NICA agreed to do what it could have done all along: pay Nguyen for 20 hours a day at $15 per hour to care for Justin. NICA administrators also said they are “working with the family” to provide Nguyen four years of back pay, although the policy allowing payment for parents went into effect 18 years ago.

Jennifer Pham said she wishes NICA would do a better job communicating with families.

“I am grateful that Justin has lived all these years and NICA has supported him. But did we get the things we were promised for a lifetime of support? No.”