'Policy' denies nutrients to 1,000 Florida children

By CAROL MARBIN MILLER
Miami Herald

03/26/06 "Miami Herald" -- -- More than a thousand severely disabled or chronically ill children who relied on state dollars for life-sustaining nutritional supplements have been cut off from Florida's Medicaid program, resulting in hundreds of thousands of dollars in savings to the agency, state officials acknowledged Thursday.

Medicaid officials said they made ''major policy changes'' that limited the number of Floridians eligible for the feeding program -- including children with HIV or AIDS who suffer from so-called ''wasting syndrome'' and children and adults with terminal illnesses such as cystic fibrosis.

The disclosures, some of which were made during a conference call with doctors and nutritionists who treat Floridians who depend on the supplements, came only two weeks after the state's highest healthcare official told lawmakers no trims in spending had been made.

The policy changes worked: In June, before the changes, needy Floridians -- most of them with feeding tubes attached to their stomachs -- cost the state $1.1 million for food supplements. Last month, the Medicaid billings dropped to less than half that: $462,189, according to figures the healthcare agency provided The Miami Herald.

Reacting to outrage over the changes, detailed in a March 12 story in The Miami Herald, the Agency for Health Care Administration's secretary, Alan Levine, blamed the problem on doctors' confusion over new paperwork and Medicaid's system for determining who is eligible for the feedings. He said he was suspending the paperwork changes while agency officials talked to healthcare professionals whose patients were affected -- some of whom had called Medicaid's refusals to pay for feedings ''cruel'' and ``dangerous.''

News that agency officials had acknowledged changes to the food supplement program angered some state lawmakers who are in charge of the agency's budget.

Two weeks ago the agency assured the state Senate's Health Appropriations Committee that The Herald story detailing the inability of critically ill children to obtain subsidized food supplements was incorrect. Now, senators say, they suspect they didn't get the full story.

''It's horrible to think that an agency of the state of Florida would cut off life-sustaining nutrients to very, very sick children. It makes absolutely no sense. There's absolutely no excuse. And we're going to make sure it doesn't happen,'' said the committee's chairman, Sen. Burt Saunders, a Naples Republican running for attorney general.

''We asked them to respond to that [article] and they said it was more of a PR screw-up than anything else,'' Saunders added. ``I'm going to ask the agency to appear before this committee at our very next meeting. And we're going to make sure that there's no restriction on access to these food supplements for these children.''

Levine said Thursday the state's spending on supplement claims is ''alarming'' and described the program as ripe for abuse because some supplements can cost thousands of dollars each month. Still, he added, he is committed to paying for all supplements that are medically necessary.

Even though fewer children are being fed by Medicaid because of decisions to curtail who can get state-paid nutrition, Levine continued to insist the agency imposed no ''cutbacks'' in spending for the supplements.

He defines ''cuts'' as a deliberate decision to ask lawmakers for less money.

''There was no cut to the program,'' Levine said late Thursday. ``It has the same appropriation we had before. We did not cut funding.''

He said Medicaid provided a safety net in the new policies, allowing doctors to obtain ''prior authorization'' for supplements even for Floridians who technically do not meet the new criteria. What went wrong, he said, is doctors were unable to obtain the over-rides from the agency.

''That's why I suspended the procedure,'' Levine said. ``It clearly wasn't working the way it was supposed to work.''

The Medicaid changes have resulted in 2,090 fewer adults and 1,010 fewer children getting state-paid supplements in February, compared to June.

Among the changes outlined Thursday to the doctors and nutritionists by Beth Kidder, bureau chief for Medicaid services:

• Medicaid ceased reimbursements for children with HIV or AIDS who suffer from ''wasting syndrome'' or failure-to-thrive, a life-threatening form of malnutrition.

One result: A 16-year-old Broward County girl, who has end-stage AIDS, has been denied feedings since the new policy took effect, Lauren Bernstein, a dietitian at the Children's Diagnostic & Treatment Center in Fort Lauderdale, told The Miami Herald. The girl suffers from severe malnutrition, and the ''high-calorie milk shakes'' Medicaid officials suggested in lieu of supplements won't provide adequate nutrition, Bernstein said.

• Medicaid stopped reimbursements for adults who are able to receive even small amounts of food by mouth, such as people with cystic fibrosis who gain much of their nutrition through feeding tubes but can also eat some solid food.

• Medicaid stopped paying for supplements for children who receive at least half their food by mouth.

• Medicaid will not pay for supplements for children who are capable of eating and digesting solid food.

But even though children with kidney failure can eat solid food, the disease leaves them with no appetite, Pat Hare of All Children's Hospital in St. Petersburg told Medicaid officials, according to agency records. They can suffer from malnutrition and failure to thrive -- which are not covered diagnoses.

During the conference call, a handful of healthcare workers complained the state has made it extremely difficult to get approval for nutritional formula even for people who qualified under the new policies. Nutritionists said they were never told about new billing ''codes'' that were necessary to gain approval.

Clara St. Thomas, a pediatric nutritionist at the University of Miami, said later Thursday: ``They changed the rule book and they didn't tell us the rules.''

Even after state officials halted the new restrictions, some healthcare workers say they still can't get the state to pay for needed supplements.

Bernstein said a 6-year-old boy with a rare genetic disorder, Opitz-Frias Syndrome, who gets all his nutrition through a tube connected to his small intestine, had been repeatedly denied supplements since February. When Levine announced he had suspended the new policies, she resubmitted the claim.

On Monday, she said, the child's claim was denied again.

''That's absolutely unacceptable,'' Levine said after being told of Bernstein's frustrations. ``I will not go along with that.''

Sen. Ken Pruitt, a Port St. Lucie Republican who will become the next Senate president, said lawmakers will ensure that children get the supplements they need.

''We're going to fix it,'' Pruitt said. ``You always have concern if an agency comes forward and says one thing and is doing the opposite.''

Herald staff writer Marc Caputo contributed to this report.

© 2006 MiamiHerald.com and wire service sources.