Tyler, his mother wrote, “is very important to our family and we truly enjoy having him at home with us.”
But each year, keeping Tyler at home has become more difficult; Fauerbach describes her twice-yearly battles with the state as “David vs. Goliath” conflicts. In a recent review, eQHealth reduced the number of daily nursing hours prescribed by his pediatrician from eight to zero, Fauerbach wrote. Fauerbach appealed the reduction, and when state Medicaid administrators interviewed her in preparation for a hearing, they asked her why her then-15-year-old daughter could not become Tyler’s caregiver, she said.
“She loves Tyler, and wishes she could do more. She’s just not trained to do more,” Fauerbach told The Miami Herald. “It’s not fair to ask her to take on that responsibility. It’s a really big responsibility.”
In testimony earlier this month, the pediatrician who is the final word on nursing cuts, Nathanson, acknowledged he had not once assessed a parent or other caregiver for eQHealth to determine whether they were capable of the often life-and-death demands placed on them.
In its annual report to the state, eQHealth said that the nursing and caregiving services to parents of severely disabled children were “without a doubt … our most complicated area of review.
“These reviews not only encompass decisions of medical necessity, but they also factor in the socio-familial conditions in the home, the ability of the parents to care for the disabled child, and whether there are additional children [perhaps also disabled] in the home under the care of the parents,” the report added.
A mother’s dread
The state’s method for evaluating medical necessity was explored at length in a February deposition, and, later, in Nathanson’s testimony this month, in the appeal of the 10-year-old girl with a tracheostomy tube. The Herald is not naming the child or her mother to protect their privacy.
The youngster at the center of the dispute was born with a rare genetic disorder, called Marshall-Smith Syndrome, which is often fatal in early childhood as it involves sometimes severe respiratory impairments. Since her birth, the girl has endured 21 surgeries, many of them involving her head, to correct deformities of her facial bone structure.
The girl’s doctor prescribed 24-hour registered nursing care for the child, who could sustain life-threatening neurological damage in moments if her breathing tube became clogged. The state agreed to pay for 18 on weekdays, and fewer on the weekends. This year, the mother was among 1,336 parents appealing cuts to home caregiving — which represented 88 percent of such Medicaid-related hearings overall.
At a hearing on Dec. 14, Nathanson testified the girl did not require additional care, and that any other nursing hours would be for the “convenience” of the girl’s mother only. Earlier this year, the mother had been accused by the state of “fraud” for asking for the hours, her lawyer said at the hearing.
Under questioning by Talenfeld, the child’s lawyer, Nathanson acknowledged that no one with his company had ever examined the girl, performed any tests, done a safety assessment, read the child’s medical records — or even requested a copy of them. In February, Nathanson said he did not know the name of the genetic disorder she suffers from, and knew only that the syndrome involved facial abnormalities. The company also had never explored whether the girl’s mother had the skills to take care of a medically fragile child with a breathing tube, the doctor said.
“You’ve never laid eyes on [the girl], have you?” Talenfeld asked.“That’s correct,” Nathanson answered.
Nathanson acknowledged that his company does not encourage doctors to submit detailed medical records — eQHealth’s online submission system provides no place to input the records — and, in the 10-year-old’s case, he never asked for them, even though he knew the mother was appealing his cuts.
“I don’t have to,” he said.
“And that’s why you denied this application, isn’t it?” Talenfeld asked.
It wasn’t until the girl’s mother testified at the hearing — after months of costly legal wrangling — that Nathanson learned she was terrified that her daughter would perish in her care, and that on the rare occasions the girl’s breathing tube malfunctioned without a nurse present, the mom was in “panic.”
“You’re concerned?” Talenfeld asked him.
“Yes,” Nathanson conceded. “I’m concerned.”
The hearing officer, Rafael Centurion, who works for the Department of Children & Families, has yet to rule.