Civil Law

Posted on Sun, Mar. 12, 2006 MIAMI HERALD WATCHDOG FLORIDA MEDICAID Money to feed disabled kids is cut Florida's Medicaid agency has cut off payments for nutritional supplements for severely disabled children, saying it needs to control costs. BY CAROL MARBIN MILLER cmarbin@MiamiHerald.com In an effort to save money, Florida Medicaid officials have stopped paying for the feeding supplements for perhaps thousands of children who suffer from severe physical disabilities, have HIV or are dependent on kidney dialysis to survive, healthcare officials say. Most at risk, doctors say: children with severe disabilities, such as cerebral palsy, who cannot eat or swallow on their own and receive all their sustenance from feeding tubes connected directly to their stomachs. Earlier last week, Gov. Jeb Bush announced in his State of the State address that a top priority of his last year in office was to return $1.5 billion in tax money to Florida taxpayers. Though some officials at the state Agency for Health Care Administration, which oversees Medicaid, say the changes were not designed to save money, an email from an AHCA official, obtained last week by The Miami Herald, says otherwise. ''We've made many policies more restrictive than in the past, due to the out-of-control costs of Medicaid,'' Emily Fritz, Medicaid's community relations director, wrote earlier last week to a University of Miami dietitian, explaining the decision to dramatically curtail the number of children for whom the state subsidizes supplements. ''It was a tough, but necessary, decision,'' she added. It's not immediately clear how many children may be affected by the policy change or precisely how much the state expects to save. But doctors and dietitians who treat disabled and medically fragile children call it a ''dangerous'' decision. ''It frightens me to think what can happen,'' said Sheah Rarback, director of nutrition at Miami's Mailman Center for Child Development, which provides care to hundreds of children with developmental disabilities and neurological disorders, such as cerebral palsy and mental retardation. ''Of course, there can be serious medical consequences -- even life-threatening,'' said Dr. John Thompson, director of pediatric gastroenterology at the University of Miami School of Medicine. ``I'm sure this could become a life-threatening situation if a child is becoming malnourished.'' AHCA Secretary Alan Levine told The Miami Herald late Friday he was unaware of some of the recent changes, and will be reviewing the new policies to see whether there is any potential for harm to children. ''This is the first I've heard of this,'' Levine said. ``No one has called our office to complain or bring it to our attention.'' Levine called it ''absolutely unacceptable'' if Medicaid claims for necessary food supplements are being wrongly rejected by the agency. ''If it can be documented that an item is medically necessary, it will be approved,'' Levine said. ``All they have to do is get it authorized.'' Levine said he was directing his staff to talk to doctors whose patients cannot get needed formula, ``hear what their clinical issues are, and make a determination, based on their input, as to whether the policy needs to be changed or not.'' He added: ``When it comes to children, if something is medically necessary, we need to provide it and we will. . . . Trust me when I say this: particularly when it relates to children, we take this very seriously.'' The new policies already may have harmed a child. A 12-year-old Miami girl who receives care from the University of Miami was hospitalized recently after Medicaid refused to continue paying for her formula and she became seriously malnourished. The girl, who suffers from a form of muscular dystrophy, cannot eat enough food to sustain her growth, said dietitian Clara St. Thomas. ''We did everything we were supposed to do. We jumped through every hoop. And we were still denied,'' said St. Thomas, who added the teen depends upon liquid supplements for virtually all her nutrition. ''She couldn't get enough calories, and she got sick,'' St. Thomas said. The girl's doctor was calling the nutrition department demanding to know: ''What's going on? Why can't this child get her milk?,'' St. Thomas said. Laura Martinez, who adopted her 7-year-old son, Prince, from foster care, is worried about her ability to feed her child as well. Prince was born with severe cerebral palsy, the result of brain damage at birth, Martinez said. She raised the boy as a foster child after his birth parents neglected him, then adopted him two years ago. She feeds him through a gastrostomy tube, or G-tube, connected to his stomach. Prince originally was fed an expensive formula called Peptomin Jr. until the state refused to pay for it. When she shifted to another supplement, called Pediasure, which can cost as much as $15 for a six-pack of cans, Medicaid officials refused to pay for that as well, Martinez said. ''We can't seem to get the food we need, and it's so expensive,'' Martinez said. Nutritionists at both the University of Miami and All Children's Hospital in St. Petersburg say the Medicaid changes began last summer, but some of them did not affect some patients until the beginning of this year, when doctors began renewing prescriptions for the expensive formulas patients use. Navigating through the changes was maddening, the healthcare officials said. Pat Hare, director of nutrition services at All Children's, which serves children in clinics throughout much of Central Florida, said Medicaid officials never told the hospital that they were changing forms and policies. Officials discovered the problems when reimbursement forms were returned stamped ``denied.'' Dr. Gwen Wurm, director of community pediatrics at the University of Miami, said she called the state Medicaid office in Tallahassee herself and asked officials to explain to her how to fill out the prescription forms so they won't be rejected. ''They tell you they won't answer questions about it,'' Wurm said. ''I fill out the forms, and they get rejected,'' added Wurm, who called the Medicaid changes ``unconscionable and cruel.'' Said Ann-Britt Bennett, a nurse practitioner at the University of Miami's gastroenterology practice: ``You cannot talk to these people. They do not talk on the phone. . . . This is really hurting the poorest people in our community.'' Some UM officials were told by Medicaid to instruct patients to ''blenderize'' table food so that it somehow can be poured into patients' G-tubes, Wurm said. But doctors are rejecting the idea as misguided and potentially dangerous. For one thing, Thompson said, he doubts the parents of most patients will be able to fashion a blended diet with enough nutrition for patients who already are fragile. But there's also the risk that such food will clog up or infect feeding tubes, resulting in even greater problems. ''My biggest concern is that some families aren't going to be able to afford enough formula, so they will just limit the amount of food they give their child,'' Wurm said. ``It's just a mystery to me why they are doing this. There is too much potential for problems.'' Hare, at All Children's, said she also is concerned about several Central Florida children -- she doesn't know exactly how many -- with HIV and AIDS who depend upon nutritional supplements to stave off a complication called HIV wasting, a form of malnutrition. Medicaid has rejected many such claims, saying the children can be fed other ways. ''It seems like all our patients are getting denied,'' she quoted the clinic's director as saying. Hare also worries about a number of children on dialysis who have been denied formula. ''These kids just don't eat,'' Hare said. ``Growth failure is just one of the complications. A lot of these kids have gastrostomy tubes. We've never had a problem before getting them covered.'' For several patients, doctors and nutritionists have submitted Medicaid forms over and over and over again, only to see them repeatedly returned with a ''rejected'' stamp, the healthcare officials say. ''It seems pretty clear this is a cost-saving measure that will have a significant negative impact on the health of the children we take care of,'' said UM's Thompson. -------------------------------------------------------------------------------- © 2006 MiamiHerald.com and wire service sources. All Rights Reserved. http://www.miami.com