ZEPHYRHILLS — The fight is on in earnest for a family to continue 'round the clock nursing care for their 9-year-old daughter who suffered severe brain damage last year when her stroller plunged into the Erie Canal.
A state agency has upheld Blue Cross Blue Shield's decision to stop paying for a nurse to care for Selah Clanton, who spent eight weeks in a deep coma at a New York hospital before recovering to what doctors call a persistent vegetative state. It is similar to that of Terri Schiavo, a Pinellas woman who became the center of a 2005 legal battle to remove her feeding tube. Selah can't walk or eat and must stay on a tracheal tube to avoid choking on her own saliva. A tube in her stomach delivers formula.
"If my daughter is not in need of a nurse," said Yvonne Clanton, "then who is?"
The Clantons' nurse was covered since January when they returned home from Rochester. They had traveled there with Selah and their four other children for surgery to recover eyesight for daughter Sarah, then 5. The two girls and a 9-year-old boy, Shad, were all adopted from overseas orphanages. Sarah, Selah and the Clantons' biological son, Samuel, 9, all are developmentally delayed.
The father, the Rev. Jon T. Clanton, a chaplain at Zephyrhills Correctional Institution and a local pastor, took Selah and Samuel for a walk in a double stroller. As he let go of the handle for a second to check the time on his phone, the stroller rolled into the canal. Clanton dove into the 12-foot-deep water. Some passersby pulled the three out.
Doctors told the Clantons it was legal to let Selah die, but they refused. They got her into a clinical trial with fish oil. Next week, they plan to put her in a hyperbaric chamber twice a day in hopes it will help her brain fire more normally.
Earlier this month, the Clantons recently got a letter from Blue Cross denying the nursing care. They appealed. On Wednesday, they got word from the Florida Department of Management Services State Group Insurance denying the appeal.
The reason, the agency said, is because Selah's care can be performed by family members.
Mrs. Clanton, who is with the children all day while her husband works, disagrees. She also points out that Selah's doctors wrote letters in support of keeping the nurse. They plan to take the appeal further, even if it means going to court.
Jon Clanton said last week that a nursing home was out of the question.
"There is no way in hell we are putting her in an institution," he said.
Barbara Crosier, director of the Division of State Group Insurance, declined to discuss specific cases due to privacy laws but said rules allow an appeal to either an administrative law judge or an informal in-house hearing. Policyholders also may ask their insurance companies for an external review.
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Yvonne Clanton wrote in her blog that she suspects Blue Cross knows that Selah qualifies for Medicaid and wants to shift the burden to that agency.
The trouble, one expert says, is that Medicaid reimbursement rates have remained stagnant since 1987.
"For those kids who have Medicaid services, even if they have 24/7 care, home health care can't find the nurses to cover them," said Matthew Dietz, a Miami attorney who has sued the state over the institutionalization of children. Finding nurses to work the night shift, he said, "is almost impossible."