State depriving sick and disabled kids of healthcare, doctors say

U.S. Circuit Judge Adalberto Jordan, who handed down a blistering 153-page ruling declaring the state’s healthcare system for needy and disabled children to be in violation of several federal laws.
U.S. Circuit Judge Adalberto Jordan, who handed down a blistering 153-page ruling declaring the state’s healthcare system for needy and disabled children to be in violation of several federal laws.

The medical directors of a Florida agency that treats some of the state’s sickest and most disabled children — kids with conditions ranging from HIV to cleft lips to diabetes to malfunctioning hearts — are accusing healthcare administrators of “dismantling” the program amid a controversial overhaul that already has purged close to 6,000 children from enrollment.

In a strongly worded letter to state health administrators, at least 14 medical directors or assistant directors from throughout Florida say recent changes to the Children’s Medical Services program risk diluting the medical care for thousands of children. And, while the new program is being implemented, the doctors say, all new enrollments have been halted, forcing even the most frail children to wait.

“Pediatricians and pediatric specialists who have spent years caring for Florida’s children with special healthcare needs at CMS are alarmed at the vast changes that have taken place,” the Aug. 20 letter states.

The doctors who signed the letter — they compose the lion’s share of the program’s medical directors — accuse the state of gutting the healthcare program without first explaining why or seeking input from the doctors who provide care in the trenches.

Administrators have so diminished CMS, the doctors wrote, that it no longer meets the criteria for accreditation, a formal endorsement. Under federal law, CMS will need to secure accreditation once it operates fully as a Medicaid managed care agency.

The Accreditation Association for Ambulatory Health Care, or AAAHC, a private, nonprofit group based in Illinois, wrapped-up a visit to the state to evaluate CMS on Wednesday. The medical directors wrote that they were “seeking the opportunity to enter into substantive discussion with the leadership of Florida CMS and the [accreditation team]” before any decisions are made.

In a lengthy email to the Miami Herald, Health Department administrators denied the medical directors’ accusations, saying the agency had never imposed a moratorium on new admissions, and that a controversial screening tool that has pushed thousands of children out of the program “was carefully and thoughtfully developed to ensure that CMS is serving children with special healthcare needs as directed by the Legislature.”

“The Florida Department of Health’s Children’s Medical Services’ (CMS) staff is committed to serving Florida’s most vulnerable population,” DOH spokeswoman Tiffany C. Cowie said in the email.

Children’s Medical Services was created by statute in 1975, but its predecessor, the Florida Crippled Children’s Commission, dates back to 1929. In the ensuing decades, it moved among several different state departments, eventually landing within the Department of Health. Louis St. Petery, a Tallahassee pediatric cardiologist who led the state’s Pediatric Society while the group sued the state in an effort to improve Medicaid funding for children, said CMS had been a national model for generations.

In a meeting of the state Senate Health and Human Services Appropriations Subcommittee last March, Sen. Rene Garcia, a Hialeah Republican who chaired the panel, acknowledged that changes to the healthcare program were prompted, at least in part, to save money. For the current budget year, the CMS managed care plan will cost taxpayers close to $700 million, $421 million of which are federal dollars.

“We know that the pie is limited,” Garcia said. “We don’t have unlimited resources to take care of everyone, from the simplest condition to the most severe condition.”

State lawmakers in 2011 ordered that CMS be run as a managed care entity. The Legislature has done the same for Medicaid, the state’s insurer for the needy, as a whole. Under the Health Department’s plan, children removed from CMS would be enrolled in one of the state’s other Medicaid managed care plans, and administrators have insisted that even the sickest children would receive adequate care after being transferred to a different policy.

The Medicaid managed care program has become an object of significant controversy itself in recent months. Last December, U.S. Circuit Judge Adalberto Jordan handed down a blistering 153-page ruling declaring the state’s healthcare system for needy and disabled children to be in violation of several federal laws.

The state argued that the shift to managed care has infused new dollars into the insurer, rendering the judge’s decision moot — an argument children’s advocates strongly deny. Jordan has yet to rule on the claims.

The Health Department’s overhaul would shift some of the state’s most fragile children into the same Medicaid program Jordan said had been so underfunded that it is akin to rationing. The letter written by CMS medical directors suggests that, amid the squabbling over Medicaid’s health, state administrators deliberately froze out the very doctors who are running the program.

For more than 30 years, CMS’ medical directors met quarterly with state administrators to help direct state policy and discuss challenges to the program. Minutes of some of the the meetings, obtained by the Miami Herald, show some of the medical directors expressed concerns about the state law that was forcing frail children into Medicaid managed care programs that were never designed to meet the needs of the sickest children.

Minutes from the Aug. 24, 2013, meeting show state health administrators were aware that children enrolled in CMS likely would require more extensive care — and incur greater costs — than Medicaid was willing to pay. Last year, the state eliminated the directors’ meetings altogether.

The shift to managed care has resulted in several cuts to both the quality of care and the number of children receiving it, the letter contends. Among them:

▪  As state health administrators rolled out the managed care program, they imposed a moratorium on all new admissions. “This is especially concerning for those children for whom CMS provides the only available comprehensive system of care able to handle these children’s unique problems,” the letter said.

“For example, newborns born to HIV-positive mothers need immediate treatment if they are to have any hope of not developing a fatal disease,” the letter added. “CMS has the only comprehensive program for these children, yet these vulnerable children are refused admission to CMS during this moratorium.” DOH denies there is a moratorium on admissions.

▪  All 77,990 of the state’s current CMS patients either have been, or are being, re-screened by the state to determine whether they are eligible. In their letter to the state, the 14 directors and assistant directors said the state Health Department had tampered with the nationally recognized and “copyrighted” screening tool to artificially limit the number of children who now will be allowed into the healthcare program.

The doctors claim re-screening is forcing one-in-four patients off the CMS rolls. “It would appear that this inappropriate application of the ... screener is actually designed to screen currently eligible children out of CMS,” the doctors wrote.

The families of four children kicked out of CMS filed a legal challenge to the re-screening in June, asking a state hearing officer to toss out the eligibility tool. Eventually, all of the plaintiffs named in the challenge were re-enrolled into CMS.

Two of the children reflected in the petition are identified by the intitials A.S. and Y.S. A.S. is a 6-year-old girl, and Y.S. is her 9-year-old brother.

A.S. is legally blind, and suffers from “retinal detachment issues” in both eyes, records say. He’s already endured six eye surgeries since age 3; after one surgery he was forced to lie in bed face-down for two weeks in order to recover. His older sister also has “severe eye impairments,” and is at risk of going blind herself without proper care.

The children’s mother “had difficulty understanding and answering” the questionnaire the state administered, the petition said, and both her children had been removed from CMS. The mother was told A.S. would be enrolled in a Medicaid plan that the boy’s Miami eye specialist does not accept.

Also removed from the health plan was 13-year-old L.R., a girl from Midway, Fla., who has been diagnosed with a heart condition — one of the girl’s heart valves leaks blood — as well as chronic hives.

L.R. was left uninsured after a Department of Health re-screening, the petition said, and had to cancel two appointments with a skin cancer specialist.

▪  The doctors say that cuts to a program that links specialists in the care of children with cleft lips and palates has resulted in most of the state’s cleft lip clinics closing. The Health Department denied the allegation, and said no patients from the clinics have been left without care.

St. Petery, the Tallahassee doctor who helped spearhead the federal Medicaid lawsuit, said children’s advocates and pediatricians are at a loss to understand why CMS was targeted for an overhaul. “This is one of the few programs,” he said, “that has not been a sore thumb, hasn’t been a problem.”