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Jax-Area Families Say Florida Medicaid Is Improperly Denying Their Kids Care

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W.B., a 1-year-old boy with a rare genetic disorder called CHARGE syndrome, has spent much of his young life in Jacksonville-area hospitals. His doctors said that without treatment at a specialty clinic run by the Cincinnati Children’s Hospital, he would likely suffer developmental delays and other medical problems, but the state of Florida denied that treatment. 

His is one of two families from Jacksonville and St. Augustine who are suing the state of Florida, arguing that the state-run Medicaid program is illegally denying specialized care for sick and disabled children based on a standard that violates federal law. 

For children under 21, federal Medicaid rules mandate coverage of “early and periodic screening, diagnostic and treatment services,” or EPSDT, for Medicaid-enrolled children. 

Under EPSDT, states must provide all Medicaid-covered services necessary to “correct or ameliorate” physical or mental conditions of Medicaid beneficiaries under age 21, regardless of whether those services would be covered for adults.

“Our state Medicaid agency has refused to extend those protections to some of Florida’s most vulnerable children,” said lead attorney Katy DeBriere. “Instead, Florida insists on applying the same criteria to infants and children with medically complex needs that it applies to adults.”

Attorneys have identified about 1,000 families who last year appealed coverage denials with the Florida Agency for Health Care Administration, which operates the state’s Medicaid program. The two named plaintiffs — who are referred to by their initials in court documents to protect their privacy — are both medically fragile children who were denied care that their medical teams deemed critical. 

The other named plaintiff, A.W., has quadriplegic cerebral palsy, global developmental delay, muscle spasticity and partial epilepsy. The 11-year-old girl requires a special enclosed bed with access ports to accommodate her overnight feeding tube and an unbroken perimeter to prevent serious injury. 

“It’s terrifying to think what could happen without the special bed my daughter needs,” said A.W.’s mother. “It’s so stressful and frustrating knowing that medical equipment that would keep her safe is not available to her because Florida Medicaid won’t cover it. They also did not consider her quality of life when they denied the equipment. My child, like all special needs children, deserves that consideration."

State courts have since 2006 found on at least four occasions that AHCA improperly applied Medicaid rules. In one case, a judge found the state improperly reduced the home health aides available to a medically vulnerable child against the recommendation of the child’s doctor and outside medical experts. In another, a judge found that state regulators denied a child medically necessary growth hormones by applying the same too-strict standard for what qualifies as medically necessary. 

“I don’t want to speculate about why the state has persisted in using this definition, but certainly the state court system has disagreed with it,” DeBriere said. “So now we are asking the federal court, who has the power to tell the state agency to stop using it, asking them for a final decision on the matter.”

The legal team, which includes attorneys from the National Health Law Program and has the support of Jacksonville Area Legal Aid, is asking a federal judge to reverse the AHCA’s decision not to cover care for the two Jacksonville-area families, and for a permanent change to the state’s rules about what care it has to cover. 

A spokesman for the AHCA declined to comment for this story, saying the agency does not comment on pending litigation. 

Contact Sydney Boles at sboles@wjct.org, or on Twitter at @sydneyboles.