Six-year-old Aref Shabaneh is almost entirely blind, able to read only in Braille, walks with a cane, and is so sensitive to light his parents turn them off when he's home. For two years, he was enrolled in a taxpayer-funded health care program that provided specialists to help protect what little is left of his eyesight.
In June, Florida health administrators declared in a memo that the little boy was "NOT clinically eligible."
His severely detached retina had not been miraculously cured by doctors. Instead, state records show, Aref had been tossed from the program by state health employees looking to cut costs. They made the move after his mother failed to see the trap door hidden in a questionnaire from the Florida Department of Health — a "screening tool" that one judge declared invalid in September, but the Department of Health is fighting to reinstate.
Emails and other records obtained by the Herald show the screening process imposed earlier this year was part of a deliberate attempt to reduce spending on kids like Aref — by making the number of youngsters in a program called Children's Medical Services shrink to line up with the money the state wanted to spend.
"I was in deep shock," mother Reena Shabaneh said after a CMS nurse called to tell her both Aref and his older sister — who also suffers from retinal detachment and has severe vision problems — were removed from the program. "I went crazy. I did everything I was told. I didn't know what was the problem."
Aref is among about 9,000 Florida children who have been purged from Children's Medical Services since May as part of a wholesale reorganization of the program in conjunction with a new state law. The law, passed in 2011, changed CMS from a Medicare-like fee-for-service plan, where the child goes to a doctor and the insurer pays the bill, into state-run managed care, in which the state sets aside a pot of money — which is capped — and hires insurers to divvy it up.
The overhaul of CMS is a story about rationing of services for children who are poor and disabled, a long tradition in Florida. It is about the malleable nature of words like "moratorium," and about numbers on a balance sheet. It is also about individuals represented by those numbers — kids like Aref.
"This is definitely rationing of care," said former CMS division chief Phyllis Sloyer, a process that has forced administrators to choose which Florida children are "the sickest of the sick."
"I know what the system is like to try to access," said Sloyer, who was a CMS administrator from 1979 through 2011, the latter 14 years as division chief. "The families don't know how to advocate. That was not their role. Their role was to go to somebody and say 'I need help with my child.' CMS care coordinators were there to advocate for them, and to help them get what they needed. They knew the system, and knew how to work it."
In an interview Friday morning, health department administrators emphasized their commitment to operating a high-quality health care system for children with special medical needs, saying recent overhauls of CMS were made in order to bring the program into compliance with state law.
More than 2,200 primary care doctors, and more than 16,000 specialists, participate in the CMS health care plans, state Surgeon General John Armstrong said, asserting that the program remains as strong as ever.
"We are dedicated to the care of children with serious and chronic medical conditions, and their families," said Armstrong, who heads the Department of Health. "We want every child in Florida to achieve his or her full potential. And this program is so important for the medically fragile children in the state."
The Miami Herald obtained thousands of pages of health department documents under the state's public records law, including nearly 800 emails and hundreds of memos and reports that detailed the state's plan to "restructure" CMS. They show that the elimination of children from CMS was the result of a plan to slash spending on sick kids at a time when Florida had a $635.4 million surplus. For the legislative session that begins next month, Gov. Rick Scott has proposed $1 billion in new tax cuts. The spending plan would eliminate an additional 718 health department positions.
For the parents of kids like Aref and his sister, who also is nearly blind, the restructuring has brought added pain to the struggle of raising a fragile child.
The parents of one Palm Beach County infant learned on the eve of a critical craniofacial surgery that their 6-month-old son had been "screened out" of CMS. The little boy is profoundly disabled, records show, having been born deaf, without eyes, and with a disfiguring cleft palate. The child's mother called CMS in preparation for the surgery, only to be told "the screening is showing 'NO,' so they would not do anything."
"URGENT" read the subject line of a Feb. 2 internal email. "There is nothing that we can do?"
There was something they could do.. Within a few days, the infant was re-enrolled. Thousands of other youngsters, though, did not fare as well.
Paying the cost for excellence
"In the late '80s and '90s, Florida was a beacon for great health care, regardless of someone's walk of life. It was really a true center of excellence for health care in the South," said Eric Stelnicki, a Hollywood craniofacial surgeon who treats children with cleft palate disorders. But excellence came at a cost.
CMS' success generated new demands for care. Florida lawmakers took notice and became disturbed by the program's growth.
Children who are medically eligible can join CMS two ways, either through the state's Medicaid program for children in poverty, or through KidCare, a state-run insurer for families that make too much money to qualify for Medicaid but not enough to afford insurance. The lion's share of kids entering CMS receive Medicaid, and, among them, enrollment leapfrogged from 58,843 in budget year 2010 to 70,513 by 2014.
Increased enrollment meant more spending. CMS Medicaid claims increased by nearly $100 million from 2010 to 2014, from $713.3 million to $811.1 million, according to the state Office of Program Policy Analysis & Government Accountability, the research arm of the Florida Legislature.
The state hit on a handful of remedies:
• Reduce the number of children eligible for services.
• Cut the payroll — 170 positions, including nurses doctors and caseworkers, were eliminated.
• Curtail funding for specialized clinics that treat children with facial deformities, such as cleft palates. At least two of the clinics were forced to shut down.
• Cease payment for expensive food items that can, among other benefits, prevent children with metabolic disorders from suffering permanent brain damage.
The way the state reduced the number of eligible children has caused a big stir, among academics as well as parents. Critics blamed the "screening tool," which consists of five questions asked of the parents of children with disabling illnesses. One of those questions, No. 3, is a trap, they say — one that exploits the yearning of every parent of a sick or disabled child to believe that their son or daughter can live a normal life.
The question: "Is your child limited or prevented in any way in his or her ability to do the things most children of the same age can do?"
Give the wrong answer — no — and your child is eliminated.
"These kids may be able to play baseball, and they may be able to go to school. But, of course, that doesn't mean they are 'normal,' " Stelnicki said.
Florida long has rationed care and services to Floridians with chronic health needs and disabilities. The largest community-based program for children and adults with developmental disabilities — such as autism, cerebral palsy and mental retardation — has a waiting list with more than 21,000, all of whom already were deemed eligible. A separate program for frail elders and other disabled adults hoping to avoid costly nursing home care has another 32,000 Floridians on a wait list.
Last December, a federal court judge in Miami ruled that the state's Medicaid program left impoverished children with a second-rate health care system that is so poorly funded it violates federal law. In the meantime, though, as issues in the suit remain pending, the health department has drained even more money from the CMS safety net program.
It is the state's Medicaid program into which most of the children who are purged from CMS will be transitioned. And Sloyer, the CMS chief until 2012, says Medicaid doesn't do much of what CMS offers, such as providing care coordinators to help parents access therapy and medication, and organizing one-stop clinics for kids with sickle cell disease, HIV or cleft palates.
"I'm sorry, but the (Medicaid) health plans don't have that. That's not in their mix," Sloyer said. "If somebody were to swear on a stack of Bibles that (Medicaid) could meet the needs of these children, I'd say 'fine.' But I don't believe it."
The lion's share of CMS enrollees — or 78,000, as of June — became eligible through Medicaid, the state's primary insurer for the most impoverished Floridians. Another 15,000 children became eligible for CMS through KidCare. A Health Department memo from July said Kidcare enrollment in CMS was higher than the department had anticipated.
Enter the screening tool, which was developed by a team of doctors and scholars at Johns Hopkins University in Baltimore. Christina Bethell, a public health professor, headed the team.
Bethell said question No. 3 was added to the assessment tool late in its development, and the intent was to include a small number of mostly developmentally disabled children who, while seemingly healthy, can be significantly limited in their ability to function and perform to the same level of their typically developing peers.
Children with cognitive impairments or cerebral palsy, for example, sometimes do not need medications or frequent visits to the doctor, but they nonetheless can require constant oversight and therapy.
Paul Newacheck, a retired emeritus professor of Health Policy and Pediatrics at the University of California in San Francisco, who also worked on the assessment tool's development, said the screener "was designed principally for use in surveys, not for eligibility determination… to estimate the number of children with special health care needs in a population. The creators did not have eligibility determination in mind when it was created."
According to a July 2015 health department memo, Florida saw the screening tool instead as a mechanism for reducing services. The memo said administrators anticipated that enrollment of KidCare children "will be in alignment with the appropriated average monthly caseload as a result of the screening project," meaning the number of kids would align with the amount of allocated dollars.
Bethell, who is "horrified" by Florida's use of the screener, said many parents, steeped in hope despite the objective reality of their child's condition, will say "no" to question No. 3 as a way to deny that their child is different.
"It's a very hard question for people to say 'yes' to," Bethell said.
Celia Kirsch's 15-year-old son, Elijah, is a CMS patient with epilepsy, migraines, asthma, kidney malfunction and bladder problems, who has had several surgeries to repair a cleft palate. "Nobody wants to openly say my child isn't like other children," she said.
Added Rex Northup, who heads the CMS office in Pensacola: "Many of these families have a vision of their children: Yes, my child has special needs, but he's not severely handicapped." The question, Northup said, "was a little salt in those wounds. It's saying, 'I want you to acknowledge to me that your child is different.'
"They've been spending their lives trying to convince people that their children, in the ways that mattered, were no different," Northup added.
Rachelle Haro-Adkins is a social worker who adopted two small children from the state's foster care system, both of whom were born with cleft palates. Her daughter, Casey, has undergone more than eight surgeries to correct the deformity, and has seen speech therapists for most of her childhood to correct the condition's affects. She's had bones grafted from her hip to her mouth to sustain a dental implant, and still has the braces she's worn for eight years. She sometimes finds it hard to be understood.
But when a CMS screener asked Haro-Adkins if her daughter was "limited or prevented," she answered "no" because the teen's surgeon said Casey will not require additional surgeries — though her face retains tell-tale signs of her condition. Haro-Adkins said she wishes her daughter still had access to a CMS cleft palate clinic that specialized in treating children like Casey. "I could trust that, with the team of doctors and specialists, she would get whatever it is she needs," Haro-Adkins said.
"I was disappointed," she said of her daughter's removal from CMS. "It's exhausting dealing with all the Medicaid issues."
Records show agency administrators knew the questionnaire would prove daunting for many families, and not just because it asked them to acknowledge their children were different. In an April email, an agency head said she had revised a letter sent to parents whose children would be rescreened so that it could be understood by a fourth-grader. The letter, she added, should contain mostly "one syllable words and as few sentences as possible."
Bethell said she believes health administrators deliberately misused her creation for the purpose of shedding enrollment. Health Department records show that administrators had a specific goal in mind, although the records obtained by the Herald don't make clear what that goal was. A draft of a CMS "Three-Year Strategic Plan" dated June 24, 2015, includes this item as a Strategic Objective: "By December 31, 2015, the (CMS) use of a new screening tool will limit enrollment to children with chronic and serious conditions who have special healthcare needs, resulting in an overall enrollment decrease of XX percent."
The "XX" was not specified.
Said Bethell: "I'm very worried about the children in Florida right now."
The records obtained by the Herald show that, in February, the Health Department conducted two pilot projects testing enrollment tools. In the first pilot, a different proposed screener left the eligibility of around 25 percent of the children tested — 221 out of 877 kids — undetermined. Administrators would have had to conduct costly and time-consuming medical record reviews to ascertain eligibility.
In the second pilot, using the Johns Hopkins screener, one in every three previously eligible children was removed. A memo the Herald obtained dated April 17 said: "With the new screening tool, CMS has projected that 38 percent of enrolled children will no longer meet clinical eligibility requirements."
A work group that conducted the pilot recommended that the nurses who administered the test ask follow-up questions to those parents, which was expected to bring the group of children purged from enrollment down to about 24 percent.
In the aftermath of the purge, health administrators used a prepared script to explain the wave of removals, records show. An internal memo suggested screeners tell parents the assessment tool was redesigned partly "to allow a survey method more focused on parent input."
Stelnicki, a facial surgeon at Joe DiMaggio Children's Hospital in Hollywood who treats CMS children with cleft palates, said several of his patients — some of whom still have disabling deformities — were eliminated after their parents gave the wrong answer to the third question.
"I have a child with metal plates attached to a bone inside his mouth that need to be removed. He was kicked out due to question three," Stelnicki said. "His orthodontist called me and asked, 'what do we do now?' The youngster, he said, will be at increased risk of infection if the plates aren't removed, and they likely will impede his speech development and dental health. "Even if I do the work for free, I'll need an anesthesiologist to take the metal plates out of his mouth. No hospital will take this kid for free."
If doctors don't continue to treat such children without charging, "these kids will have to live their lives unable to chew properly, unable to speak properly and they will have deformed faces that will stigmatize them and prevent them from living a totally 'normal' life," Stelnicki said.
Use of the tool also eliminated children who had liver transplants and require expensive anti-rejection drugs to sustain their new organs, as well as children with HIV and AIDS, who will require anti-viral medications for the rest of their lives, Stelnicki said. He said he fears some of those youngsters will enter a vicious cycle: "They won't be able to afford their medications, and they'll get sick again. Then, they'll qualify for CMS again."
Jennifer Tschetter, the health department's chief operating officer, told the Herald Friday the state had no choice but to deploy the new screening tool after lawmakers required that children have both chronic and serious medical conditions to qualify for CMS, and the Johns Hopkins questionnaire was the best method for measuring seriousness. Tschetter said she has spoken with Bethell recently, and the scholar no longer objects to the way Florida is using the tool. In an email, Bethell stood by her comments to the Herald.
Tschetter said administrators have revised a training guide for the tool to minimize the chances that a deserving child is declared ineligible, and are now proposing that youngsters with certain conditions be given automatic access to the program.
Aref Shabaneh, and his older sister, Yasmeen, were among the thousands of Florida children whose disabilities suddenly were not serious enough to remain in CMS.
Doctors are not sure why, but both of Reema Shabaneh's children suffer from severe retinal detachment. Aref's vision is worse than his 9-year-old sister's. He can read only with a Braille device, and walks with the use of a cane. Aref's sixth surgery was last June. Doctors scraped calcium from his corneas, and the boy had to lay in bed for days afterward.
"It was so terrible," his mother said. "Painful."
Yasmeen does not play with other children at school, because even a minor jolt could result in her retinas becoming unhinged. "Just sitting in class, Shabaneh said, "her retina can detach."
But when a CMS worker administered the state's new screener in June, Shabaneh said she understood the third question to apply only to children with life-threatening conditions, such as cancer or paralysis. Notes typed by an employee who spoke with Shabaneh later described her as confused, saying "Mom has a hard time understanding."
An agency nurse called with the news: both youngsters were removed from the program. "I was in shock," Shabaneh said.
"I said to them 'My children are blind. What more do you want than that'?"
Shabaneh sued the state, with the help of a Florida State University law school clinic, and her two children were reinstated.
In August, about 20 CMS medical directors and assistant directors wrote a searing letter to the state, accusing the Health Department of "dismantling" the health care program. One of the directors claimed that administrators had placed a "moratorium" on all new enrollments, making frail and disabled children wait months until the state had first rescreened about 70,000 children who already were enrolled. Health administrators denied the claim, and have continued to do so since.
"There is no moratorium on new admissions to the CMS Plan," a Health Department spokeswoman told the Herald on Aug. 26. "Presently, new enrollees are being added to the CMS Plan through the screening process daily."
The agency's records, though, show that behind the scenes, as health administrators were denying the existence of a "moratorium," they had ceased virtually all new screenings — a prerequisite to enrollment.
In a script administrators prepared in the spring for CMS staff, employees were told to answer this way when parents called asking about their child's status: "Thank you for your call. Currently, screening activities are temporarily suspended while an upgrade of the Children's Medical Services Network Eligibility Screening Guide and related systems is completed. Screening activities will resume in May."
The screenings did not resume in May. In a memo to staff on May 21, the new script read: "Children's Medical Services is working on a system upgrade, and we are unsure at this time how long that may take. CMS is unable to conduct new screenings for their program at this time." The screenings remained suspended when, in September, a judge halted them altogether, ordering the state to formally adopt the new screener, or an alternative tool, as an agency "rule."
The CMS medical director in Jacksonville, Jeffrey Goldhagen, said that, in his area alone, between 2,500 and 3,000 children "have been denied access [as they] have to be assessed in order to see whether or not they can be in CMS in the future." One of Goldhagen's patients, he said, is a boy who was paralyzed in a car wreck. The boy is in a hospice program, receiving only palliative care, Goldhagen said, because "we couldn't get him in to a CMS brain injury program."
A CMS assistant medical director from Brevard County, William Knappenberger, beseeched his boss, CMS director Cassandra Pasley, in an April 29 email to reconsider the enrollment hold "as quickly as possible."
"The fact that (newborn intensive care) graduates will not have access to CMS for a protracted period of time, and that this lack of access is being created by our own internal 'bookkeeping,' is inappropriate and medically hazardous," Knappenberger wrote. "Their first month after discharge is the most likely time for ... mortality."
Knappenberger added: "Denying access to fragile infants is unreasonable."
Rex Northup, the CMS medical director in Pensacola, said he, too, argued with health administrators not to curtail enrollment, particularly for newborns with severe cardiac, liver or other ailments. "There are babies coming out of intensive care nurseries across the state who are at extreme risk. We're asking them to leave the nursery and wait in line. They could be in extreme trouble for a day or two without appropriate oversight and intervention — much less six weeks."
"We've got children with artificial airways, tracheostomies, gastrostomies — children going home with ventilators. And my suggestion was, how about we give those children a pass so they can enroll immediately into the program?," Northup said.
"They said, 'Mmmmm, nah. We'll pass on it'," Northup added. "The most medically complex of kids are required go through this same screening," the doctor said, adding they were being required to wait months for care they needed right then.
On Friday, the health department's secretary, Armstrong, maintained "there has never been a moratorium for screening eligibility into the [CMS] managed care plan."
But when a reporter shared agency emails with the administrators, Tschetter said it was more appropriate to call the halt in new screenings a change in "focus" from new enrollments to determining whether existing patients were in the program properly. Administrators say children have been enrolled in the program throughout the rescreening period.
Tandora Williams has been raising her 7-year-old grandson since her son was slain in a drive-by shooting last January. The boy, Joey Delanor Delancy Jr., is diagnosed with a variety of impairments, including autism, bipolar disorder, ADHD and asthma. Williams is disabled, too, with screws in both her legs, arthritic-type problems in both hands, high-blood pressure and heart disease. Williams said she already has suffered two heart attacks.
Joey is a handful. He has trouble with speech and understanding language, and has difficulty pronouncing the first letter of most words. He won't sit still. He wants desperately to be like the other kids, and has crying jags when he realizes he isn't. Williams uses the bus to take Joey to therapy and neurology appointments in Weston and Fort Lauderdale. She uses an umbrella instead of a cane, she says, because she doesn't want to look like an old lady.
Joey's doctor prescribed a medication that will help him sleep at night, and it has a side benefit, as well. "The doctor said, 'when you give it to him, you go to sleep.' That's when I can go to sleep," Williams said.
Last summer, Joey's doctor at Pediatric Associates in Hollywood recommended the boy be enrolled in CMS so caseworkers could relieve some of the pressure on Williams, his sole caregiver. The 56-year-old grandmother said it took her doctor four tries over several weeks to get Joey enrolled. Or, at least she thought he was enrolled.
When Williams takes the boy to appointments, they say he is still not in the program.
"Right now they say he is enrolled," Williams said. "but when I go to get medicine, they say he is not enrolled."
Overall health department spending has remained flat in recent years, though the agency's budget declined slightly over the past year from $2.99 billion to $2.83 billion, a spokeswoman said. CMS anticipated a spread of nearly $60 million between health care expenses and what lawmakers had budgeted.
Rather than set aside more money to close the gap, Gov. Rick Scott set about cutting.
During the state's last lawmaking session, Scott's proposed budget eliminated 1,100 state jobs — 700 of them from the Department of Health. Minutes from a Feb. 27 staff meeting say the "Governor's budget is 'proposing' 109 positions be cut from CMS" alone.
The Feb. 27 minutes added: "CMS will need to look at restructuring."
Sloyer, who ran the program for 14 years, says the constant cutting appears to be leading to an inevitable end: the elimination of CMS as a health care program altogether. "The service delivery arm of CMS — the clinics, the care coordinators, the provider network — if you look at the number of children being removed from the program, you have to question whether you've got a viable program."
Said Bethell from Johns Hopkins: "It's a very shortsighted view. These are children who will not function well in school, or in life. They are the ones who are going to end up costing society a lot more later on."