MIAMI -- 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 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 Miami Herald show the screening process imposed earlier this year was part of a deliberate attempt to reduce spending on children 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.
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"I was in deep shock," mother Reena Shabaneh said after a CMS nurse called to tell her 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, 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 healthcare 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 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.
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.
"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 the state's Medicaid program left impoverished children with a second-rate health care system 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 children 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.
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.
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."