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Sickest Medicaid Kids in 'Chaos,' Doctors Say

Agency for Health Care Administration

Florida pediatricians who care for severely disabled children  say the state's overhaul of Medicaid has left  kids, parents and caregivers in turmoil.

Extremely fragile children, including some with tracheostomies and feeding tubes, face barriers in access to specialty care, physical therapy, home medical supplies and other urgent needs, the pediatricians say.

They say the barriers cropped up as the state Medicaid program rolled out its Managed Medical Assistance (MMA) program, which requires nearly all of the 3.6 million Floridians on Medicaid to be enrolled in HMOs or similar managed-care plans. That includes chronically ill and severely disabled children who until recently were cared for by a network of highly skilled doctors through a program called Children's Medical Services (CMS).

The state CMS patients were supposed to be able to continue with their same doctors if they wanted to, but the contracting company that provides "choice counseling" to Medicaid enrollees mistakenly told CMS families that their children had to switch to a private plan, pediatricians say. It is taking months to get the problem corrected and the children moved back, they say.

Families of CMS children are in "chaos," said Dr. Patricia Blanco, a pediatrician in Bradenton who has many disabled patients. "Kids are falling through the cracks all over the place."

Toby Zinsmeister, the mother of one of Blanco's patients, agrees.

"During this crossover (to HMOs), everything has been a royal mess. It's not set up for special-needs children," Zinsmeister said. 

In an Oct. 8 letter, the Florida chapter of the American Academy of Pediatrics asked the secretaries of the Florida Department of Health and the Agency for Health Care Administration for urgent, face-to-face talks about the situation.  The letter is signed by the chapter president, Dr. Tom Schechtman of West Palm Beach, and its executive vice president, Dr. Louis St. Petery of Tallahassee.

No one from the state has responded to the pediatricians' letter, St. Petery said. After Health News Florida inquired about the letter, AHCA said that one of its attorneys will draw up a response.

In a phone interview, deputy secretary for Medicaid Justin Senior said his agency will look into any specific problems if they are reported to an AHCA office. But the pediatricians' letter just makes general complaints, citing no specifics his staff can check out, he said.

Senior ruled out discussions with the pediatricians while their association is engaged in a federal lawsuit against the state's health agencies. The lawsuit,filed nine years ago by pediatricians, dentists and several children in Medicaid, says the state provides inadequate care to low-income children, mostly because it pays doctors and dentists too little. 

Any major change in a health system has glitches in its early days, Senior said, but they'll be smoothed out over time.

Blanco is not convinced.

"You get the party line that all is going well. But on the front line where we're working, not all is going well," Blanco said.

The pediatricians say they hope the federal government will intervene. In an e-mail, federal health official Cindy Mann said she will set up a time to talk to the doctors about the problems.

In Medicaid, which covers children, pregnant women, and elderly and disabled persons who have very low incomes, the federal government pays more than half of the cost and has say over how states manage their programs.  That's why the class-action lawsuit against the state health agencies is in federal court.

At a hearing this summer, U.S. Circuit Judge Adalberto Jordan said he expects to issue an opinion this month. But there is no requirement that he do so, and his ruling could be appealed, adding more years to the delay.

The pediatricians say medically fragile children are not in a position to wait for the resolution of the lawsuit or for the MMA kinks to be worked out.

The overhaul of Medicaid came in two parts: the elderly and disabled who need nursing care were switched to HMOs between fall 2013 and spring 2014. The majority of the state's Medicaid patients, most of whom are children, were enrolled in managed-care plans between May and August.  About one-third chose a plan; the rest were assigned to one by the state.

The legislature's decision to move almost all Medicaid patients into managed care was driven by a desire to control costs as the number of enrollees kept growing, and also to ensure the patients could find doctors who would take Medicaid.

The pediatricians' letter said problems created by MMA included:

--Plan switching.
Some children were assigned to HMOs without the knowledge of parents or primary care physicians, the letter said. Sometimes children in the same family ended up in separate plans, "bringing transportation nightmares to already stressed families" and wasting staff time in doctors' offices.

--A shortage of specialists.
In some cases, the letter said, the primary care physician is unable to refer the child to an appropriate specialist because the HMO doesn't have one in its local network.

--Red tape.
The hoops that doctors and other caregivers have to jump through to get authorization for treatment from different plans are confusing, time-consuming and inconsistent, the letter says.  That delays children's access to needed services. 

--Slow, low or no pay for therapy
Physical, occupational, speech and mental-health therapists "are not being paid the appropriate rates for their services and have had their authorized hours of services reduced. This results in serious delays in time-critical services for children in need of therapy," the letter says.

Claims are especially messed up in Early Steps, a state program for at-risk children from birth through the second year, the letter says.

--Underpayment to doctors.
AHCA is not paying doctors in the CMS network the equivalent to Medicare pay, which is required by the Affordable Care Act through December, the letter says.  The low pay rates are keeping needed specialists from participating in the network.

Likewise, some private HMOs are not abiding by the pay requirement, which violates Florida law, the letter says.  AHCA has received many complaints about it, the letter says, but has not done anything about it.

--Health News Florida is part of WUSF Public Media. Contact Special Correspondent Carol Gentry at For more health news, visit

Carol Gentry, founder and special correspondent of Health News Florida, has four decades of experience covering health finance and policy, with an emphasis on consumer education and protection.