Bitter Pill: Hard lives of disfigured kids made harder still

Mother Merry Fauve of Boca Raton tearfully describes the struggle of her son, 14-year-old Jeremy Fauve, to access medical care for his cleft lip and palate.
Mother Merry Fauve of Boca Raton tearfully describes the struggle of her son, 14-year-old Jeremy Fauve, to access medical care for his cleft lip and palate. Miami Herald Staff

There really was no way of knowing what to expect when the baby Kim Cattey hoped to adopt greeted the world. His birth mother hadn’t had even a passing acquaintance with prenatal care. Her four other children had been similarly neglected.

But when the newborn emerged from the birth canal on Mother’s Day 2001 — breach, as it turned out — it was worse, far worse, than anyone had imagined: Half of the little boy’s face was missing, with his mouth a gaping maw up to his eye socket. He had only one nostril. In silhouette, his face looked like a pancake.

“When I saw him, I lost every ounce of blood in my body,” Cattey said. She slid down a hallway railing and crumpled onto a waxed floor. Nurses steadied her flaccid body to a chair. “I said ‘put that back. It’s broken. It’s not done.’”

But Cattey’s domestic partner already was wrapping the newborn in a blue blanket with a matching hat, and making hand and footprints to mark the occasion. Babies with even severe cleft palate can be made whole, nurses told them, grafted and bracketed and splinted and stitched until their heads looked and functioned the way they were meant to.

“Listen,” the nurses said. “In this day and age this is all cosmetic. We can fix all of this.”

Cattey and her partner took the baby home and named him Bailey Michael Manning. But all the can-do optimism from Orlando’s Arnold Palmer Hospital evaporated when the couple tried to access the 21st century healthcare the nurses had promised.

For a time, Bailey received excellent care, his mother said — bone grafts and tooth extractions and implants and 144 stitches to build a nose. But beginning around 2010, Cattey said, almost all the boy’s doctors refused to continue treating him as state dollars dried up and they couldn’t get paid. Bailey — who reads National Geographic and likes the Weather Channel — was left with an unfinished face.

“These kids are judged,” Cattey said. “No matter what is inside a person’s mind, people judge a book by its cover. Somebody had to fix the cover of Bailey’s book so he could have a chance in life, a chance to lead a normal life.”

From left to right: Carroll Fenn, Bailey Manning's orthodontist, took these pictures in 2012, 2013 and 2014 to document her progress in relieving the crowding of teeth in the boy's mouth. Bailey has had surgeries, treatment, therapy and orthodontic work since his birth to correct the effects of his severe cleft lip and palate.

In conjunction with a special healthcare program called Children’s Medical Services, Florida currently maintains eight clinics throughout the state designed to be full-service providers for impoverished children who have cleft lips and palates. There used to be 10. Two strategic objectives of CMS’ “three-year-strategic plan” are to reduce “clinic utilization” and to “close clinic[s].”

Some of the youngsters who rely on those clinics require only orthodontic work and one or two surgical procedures. Others, like Bailey, are consigned to a childhood in the care of orthodontists, craniofacial surgeons, plastic surgeons, otolaryngologists, psychologists, audiologists and speech, occupational and physical therapists.

In theory, the clinics were supposed to help beleaguered parents navigate through a complex web of appointments and admissions and therapy. And for a few decades, said craniofacial surgeon Eric Stelnicki, who is part of the cleft palate clinics in Broward and Palm Beach counties, the clinics were the envy of the nation.

But in recent years, Stelnicki said, the dollars have no longer matched the need, a situation greatly exacerbated by the state’s decision four years ago to require that providers receive prior authorization for every expenditure. Obtaining it, doctors said, often injected a months-long wait to an already burdened system.

Last spring, when the health department transformed Children’s Medical Services into a state managed care plan, the state’s CMS specialty clinics, including the cleft palate programs, took another hit. With an eye toward saving money, health administrators moved to shut some clinics down, and drain funding from others. Doctors say what CMS described as a “restructuring” made a weakened program weaker still.

“The program is really broken, and can only be corrected by significant reorganization,” an oral surgeon from the now-shuttered Orlando cleft palate clinic, Wilbur M. Davis Jr., wrote in an April 7 letter to CMS Director Cassandra Pasley. “That is your, the Governor’s and the Legislature’s responsibility.”

The story of Bailey Manning and the hundreds of other children with disfigured faces who tried to collect on the state’s promise of a normal life is also, parents and doctors say, the story of how Florida came to turn its back on some of the sickest and most disabled children in the state — the ones whose parents’ poverty left them unable to secure healthcare without taxpayer help.

The program is really broken, and can only be corrected by significant reorganization. That is your, the Governor’s and the Legislature’s responsibility.

Wilbur M. Davis Jr., oral surgeon from the now-shuttered Orlando cleft palate clinic

In an interview with the Miami Herald, Florida Surgeon General John Armstrong defended Children’s Medical Services, saying the state remains committed to the care of youngsters with significant special needs. “We care deeply about ensuring that children with serious and chronic medical conditions receive the services they need, in a very holistic manner. We have worked to make this program child-centered and family-centered.”

Stelnicki, who undertook years of additional training to treat children born with facial deformities, said he generally is treated better in Guyana and Honduras and other developing nations where he performs surgery for charity groups than he is in his South Florida practice. “I do mission work all over the world,” Stelnicki said. In impoverished nations, he added, charities cover expenses for his room and board, and there’s no overhead.

In Florida, reimbursement from CMS is so far below what it costs him to maintain an office, staff and insurance that he loses money for every patient he treats. CMS will pay Stelnicki $300 for every cleft lip he repairs, a procedure that takes several hours to complete. In contrast, he can perform a cosmetic breast augmentation for $6,000, and complete the operation in half the time. “That’s cash,” he said.

Orthodontists, whose work is critical to the treatment of a child with cleft palate, normally are paid by CMS about $450 for each cleft palate case they take, and the treatment, doctors say, can take five to 10 years. An orthodontist can charge private insurers $4,000 or more just to treat a child who needs braces to relieve crowding, Stelnicki said. “You can’t expect a doctor to work for 10 percent of his normal billings in a case that takes 10 times longer and is 10 times more complex.” “It shows you what our state’s priorities are,” Stelnicki added.

Merry Fauve, 54, gets a hug from her son, Jeremy, after an appointment with the teen’s orthodontist in West Palm Beach. Jeremy, who attends Boca Raton High School, said the constant medical care for his cleft lip and palate is draining. Shannon Kaestle / skaestle@miamiherald.com

And that’s when the providers get paid at all. Kim Cattey, Bailey’s mom, ended up driving from Central Florida to West Palm Beach to see an orthodontist, Carrol Fenn, willing to straighten her son’s teeth for free. The orthodontic work needed to be done before a surgeon could graft a bone into Bailey’s mouth, which then led to more orthodontic work. Cattey had spent years caring for the boy, even quitting her job. But doctor after doctor walked away.

“They all dismissed him because they were not getting paid,” she said. Fenn agreed to treat him anyway.

To be eligible for CMS enrollment, children must qualify for one of two state insurance programs: Medicaid, which serves impoverished Floridians, or KidCare, which insures children whose parents make too much money for Medicaid, but not enough to afford private insurance. CMS reimbursement rates match what Medicaid will pay.

But for more than a decade, pediatricians, dentists, orthodontists and highly trained craniofacial surgeons have bolted from Florida’s Medicaid insurance program for the needy — and from Children’s Medical Services, created to treat the sickest and most disabled among them — because reimbursement rates were so low, and overhead so high, that, they said, they were actually paying to treat their patients.

Mallory Deason, a spokesman for the state Agency for Health Care Administration, which oversees Medicaid, said “Children receive all medically necessary services from ... Medicaid health plans, and expenditures are not capped.”

It shows you what our state’s priorities are.

Eric Stelnicki, CMS facial surgeon in Broward and Palm Beach counties.

Florida has maintained a two-tier system for dispensing care to children with facial deformities. The state operates four essentially full-service “craniofacial” medical centers, at Nicklaus Children’s Hospital, formerly Miami Children’s; Joe DiMaggio Children’s Hospital in Hollywood, Shands Hospital in Gainesville, which is affiliated with the University of Florida; and All Children’s Hospital in St. Petersburg. But because the centers were mostly clustered around two urban centers, six smaller cleft palate clinics sprang up elsewhere, in Pensacola, Jacksonville, Orlando, West Palm Beach, Naples and Fort Myers.

The local administrators of CMS offices across the state found a creative way to keep the six smaller cleft palate clinics open despite the low reimbursement rates. They used a small pot of medical director discretionary funds to supplement the low reimbursement rates, and, for a time, stanched the doctors’ discontent.

But a year or so ago, the bandages fell off. As a consequence of CMS’ shift from a traditional Medicare-like fee-for-service model to a managed care plan, which the Legislature ordered, the medical directors were told to cease supplementing the cleft palate clinics’ reimbursement, several medical directors told the Herald. Statewide, all payments had to match the Medicaid fee scale. Two clinics — one in Pensacola, the other in Orlando — shut down. Others scaled back their operations, and are struggling to remain open.

The number of children served at the four large clinics almost doubled from budget years 2012 through 2014, from 983 children to 1,795, according to a May 2015 CMS “fact sheet.” Funding, on the other hand, remained exactly the same, at $1.2 million.

Jennifer Tschetter, the Florida Department of Health’s chief operating officer, acknowledged the Orlando clinic’s demise Friday, saying the facility was shuttered “because a provider refused to accept the rates that all the other providers in the state agreed to.”

When the Orlando clinic closed, Tschetter said, the agency was “proud of the fact it had ensured that every child who had been seen at the clinic could receive services” at clinics either in Gainesville or Jacksonville.

Gainesville is a two-hour drive from Orlando. Jacksonville is another hour beyond that. And many CMS families don’t have cars.

Tschetter said the Pensacola clinic, which closed its door two years ago, was scheduled to reopen sometime this week.

We put it together with duct tape and Band-Aids.

Rex Northup, the medical director of CMS in Pensacola.

Rex Northup, the CMS medical director in Pensacola, said he had been pleading with state administrators for permission to reopen the clinic for well over a year — and records obtained by the Herald confirm he’d been badgering his bosses since at least last February.

“We have worked very hard for some time to re-establish this interdisciplinary clinic here in Pensacola,” Northup wrote in a Feb. 10 email to Celeste Philip, the health department’s deputy secretary. “This will be the only such clinic from the Alabama-Florida state line all the way to the Jacksonville/Gainesville centers — a distance of some 400 miles and a geographic service area of nearly half the entire state.”

He got the approval, he said, during a conference call with medical directors late last Tuesday — after a Herald reporter had sent an email to the state health department detailing issues that would be discussed during an upcoming interview, including the shuttered clinics.

Northup said the operation is being heavily subsidized by Children’s Hospital at Sacred Heart in Pensacola. Several doctors have agreed to staff the clinic free of charge. Others have acquiesced to working for nothing more than an extension of the state’s “sovereign immunity” insurance protections, which the state still has not agreed to do, Northup said. He said his bosses made it clear the clinic’s future remains uncertain.

“We put it together with duct tape and Band-Aids,” Northup said.

Closure of the cleft palate clinic in Orlando prompted controversy immediately as the parents of several patients complained to area lawmakers, who sought answers from administrators.

A day after the Orlando clinic was scrapped on Jan. 2, the region’s CMS regional director, Ayodeji Otegbeye, wrote a letter to parents, blaming the clinic’s closure on the doctors who had staffed it for years, mostly treating patients at a fee well below what the market bears. Otegbeye said most of the clinic’s children would be forced to travel to Gainesville for care. “We will try to make this as smooth a transition as possible for both you and your child,” he wrote.

Wilbur Davis, Jr., one of the clinic’s oral surgeons, accused CMS of peddling “misinformation.”

“There was no lack or providers” for the clinic, he wrote in an April 7 letter to Pasley, the CMS director, “but rather a lack of funding to [pay] the providers.”

“It is totally unreasonable to ask cleft palate and craniofacial patients, for the most part, to go to Gainesville as they do not have transportation and it is very difficult to obtain appointments, and the repeat visits become a significant problem,” Davis wrote. “It is also unreasonable to have cleft lip and palate or other craniofacial patients seek services from providers who are not skilled in craniofacial problems,” he added, suggesting parents would seek treatment nearby from doctors who were less experienced.

In Jacksonville, where the region’s cleft palate clinic has been in operation since 1952, CMS administrators suddenly cut the clinic’s budget in half, from $150,000 to $70,000, said Jeffrey Goldhagen, the CMS medical director there. “That doesn’t even cover the cost of the nurse,” he said, adding that the University of Florida, which long had supplied doctors and support staff, has been absorbing some of the losses.

Several area doctors also have agreed to staff the clinic without getting paid, Goldhagen said. “This is completely at the largess of these physicians, people who have been doing this for 20, 30 years.”

The CMS cleft palate clinic at DiMaggio Children’s Hospital in Hollywood has remained open despite the recent cuts, but the program is strained, said Drew Schnitt, a plastic surgeon who treats children both there and at a separate clinic in West Palm Beach. “The state has cut significant funding to the team, which basically hurts the ability of the team to operate — and to pay full-timers who work on the team,” Schnitt said.

Many of the cleft palate team’s services “have always been extremely difficult to get done and covered,” Schnitt said. The biggest ticket items, such as craniofacial and plastic surgery, generally get done because the doctors “will see these kids for charity,” the doctor said. “The ones that are impossible to get covered are orthodontics; frequently, dental; and ongoing and necessary speech therapy and physical therapy.”

Northup, the medical director in Pensacola, said Tschetter acknowledged in a conference call last week that CMS would like to get out of the clinic business altogether, and transition virtually all direct care delivery into private hands. “They are not really committed to sustaining them,” he said.

West Palm Beach orthodontist Carroll Fenn works inside the mouth of 14-year-old Jeremy Fauve, who has been receiving treatment since his birth to correct a disabling cleft palate. Shannon Kaestle / skaestle@miamiherald.com

Merry Fauve, whose 14-year-old son, Jeremy, has been treated at the CMS cleft palate clinic in West Palm Beach, said the clinics, and CMS in general, could hardly have been described as accommodating to begin with.

Being born with a significantly disfigured face already is more than most children can bear, said her son. “It interferes with my life,” Jeremy said. “ I really do feel like a patient all the time. It’s stressful.”

Recently, Fauve said, Jeremy was punished at school when he wrote intemperate remarks online about classmates who walked away from his table at lunch and made hurtful comments about his disability. “People bother him because of his scars,” she said. “Some kid told him he should kill himself.”

Jeremy, who attends Boca Raton High School, has undergone eight surgeries so far: to close the cavernous hole in his lip and palate, to restore his nose, to graft bones into his mouth. In the past couple of years, a surgeon installed metal plates onto bones in his upper and lower jaws, and an orthodontist inserted an appliance and brackets to expand his teeth. But when the doctors never got paid, they cast him from their practice. Meanwhile, Fauve said, Jeremy was “thrown out” of CMS.

The boy was left with metal plates in his mouth, and she still can’t get them removed, though they can become a magnet for infection.

“I can’t tell you how overwhelming it is. It has taken over every aspect of my life,” Fauve said of her struggle to raise a child with special needs. “I’m doing the best I can, and it doesn’t make it easier when your insurance company is not on your side.”

Fauve said she found an ally in Fenn, the West Palm Beach orthodontist who had a long history of accepting CMS patients dropped by other providers who were getting stiffed. “She took on his case not knowing if she was going to be paid,” Fauve said.

Fenn, who also was born with a facial deformity, said she cashed in her $100,000 retirement account, sold her car and stopped taking vacations so she could continue treating kids with cleft palates, even if she doesn’t get paid.

“I don’t want to work for free,” she said, adding: “I like the kids. I like to make a difference.”

This story is the second of two parts. Read Part 1: Bitter Pill: How Florida rations care for frail kids

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