Daniel Markey, 9, lives in a trailer with six of his family members. His medications alone amount to at least $15,000 a month, aside from his visits with cystic fibrosis specialists. Photos by Ashley Crane.

How will promised Medicaid cuts affect Shands Healthcare Center and its most vulnerable patients?


Tina Markey received a letter from Medicaid in late December informing her that her son had been switched from her preferred health plan to another without further explanation. Her son, 9-year-old Daniel Markey, was born with cystic fibrosis (CF), a genetic disorder causing the body to create unusually sticky and thick mucus resulting in digestive and pulmonary complications.

Until late December, Daniel was covered by Children’s Medical Services (CMS), a health plan under Medicaid that allows eligible children with special needs to receive adequate care. With the unexplained switch from CMS to Sunshine State Health, a more general Medicaid plan, Markey frantically scrambled to understand the mix-up.

“I couldn’t get my son his medication, his formula, during all of January. He couldn’t see his pediatric doctors,” Markey said. “I was worried about his care.”

Cystic fibrosis requires a strict care regimen and falling behind can mean long hospitals stays and difficulty breathing. Luckily, Markey had an extra supply of her son’s medications from his previous hospital visit.

“I fought with Medicaid for weeks, until they switched us back to CMS. His medications were running out when we could finally go back and see his pediatric doctors at the beginning of February,” Markey said.

The switch from the specialized but more expensive care Daniel was getting under CMS to Sunshine Health was likely Medicaid’s way to save money. The healthcare options available under Sunshine Health are not as extensive and limited Daniel to certain doctors, not the specialists he needs.

Markey argued with the Medicaid office for weeks, filling out form after form to prove her case and provide evidence of Daniel’s need for the most comprehensive health care plan. Medicaid finally approved to switch Daniel back to CMS in late January.

Impending cuts to Medicaid funding will likely cause the stacks of paperwork for patients and healthcare facilities to grow in the coming months, creating further obstacles to healthcare access. Due to Florida’s monetary shortfall in recent years, state officials voted during the 2012 State Legislative session to cut $235 million from the state Medicaid budget. This resulted in a 5.65 percent reduction in funding on top of last year’s cut of 12.5 percent. These cuts will mainly affect safety-net hospitals, which provide services for vulnerable populations of uninsured and low-income individuals, like Daniel Markey.

Shands is one of the largest safety-net hospitals in the state. Of all its patients, more than a third are on Medicaid or are uninsured. And according to the hospital, as the number of these patients has been increasing in recent years, funding is steadily decreasing. Between the budget cuts from the past two years, Shands is now operating with an estimated $41 million reduction in Medicaid funding.

Cindy Capen, a nurse and associate with the Pediatric Pulmonary Division at Shands, estimates that about 80 percent of the patients she sees are on Medicaid.

“We don’t turn people away, but there are many hoops to jump through to get reimbursed for the many Medicaid patients we do see,” Capen said. She predicts the difficulties will only get worse with the recent budget cuts.

Based on what Capen has witnessed while working at Shands, she asserts that Medicaid regulations are mainly guided by cost and not by clinical understanding of diseases.

If a medication is not typically used for a diagnosis or is not on the approved Medicaid list, for example, Medicaid requires additional paperwork from providers. The process is meant to insure that the funding is used appropriately, but more often, she said, it simply creates delays in care and reimbursement as providers struggle to prove that the medications they are recommending are in the best interests of the patient.

“Nursing used to be fun… now it’s become a battle against bureaucratic red tape,” Capen said. “So much time lost that was once spent in direct patient interaction.”

State hospitals are bracing for the coming year, not sure how to continue the best level of care with less Medicaid funding.

“If specialists can’t decide what’s right for the patient and not hit all these barriers,” Capen asked, “how can we provide the best care?”

“When I wake up in the morning, I have to do my percussions, my nebulizer, my inhaler and my nose spray,” says 9-year-old Daniel Markey. “Other than that, I’m just like all the other kids.”